Looking at Alzheimer's Disease

LOOKING AT ALZHEIMER'S DISEASE FROM A DEPTH PSYCHOLOGICAL
PERSPECTIVE
A dissertation submitted
by
KRISTIN B. CANN
to
PACIFICA GRADUATE INSTITUTE
in partial fulfillment of
the requirements for the
degree of
DOCTOR OF PHILOSOPHY
in
DEPTH PSYCHOLOGY
This dissertation has been

accepted for the faculty of
Pacifica Graduate, Institute by:
Elizabeth Nelsan, PhD

Dissertation Coordinator
Cecile Carson, MDc

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UMI Number: 3447658
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Copyright by
KRISTIN B. CANN
2006
u
ABSTRACT
Looking at Alzheimer's Disease from a Depth Psychological Perspective
by
Kristin Blacken Cann
A resident in an Alzheimer's facility greets you with a question spoken in an

urgent tone, "Can you give me a ride home? " Is this woman's question the
meaningless utterance of a demented elder, or a question with universal
significance? Is there comprehensible depth in the phenomenon of
Alzheimer's disease, or is this simply a disease which causes cognitive
deterioration and turns its sufferers into pathetic burdens of society?
This dissertation records research into the depths of the phenomenon of
Alzheimer's disease. The research explores the compelling experience of caring for
someone with Alzheimer's disease, and discovers methods of discerning and meeting
psychological and spiritual needs of those with this disease. This study used the
heuristic method of looking at personal experience and the experience of others to
gather data. The data was synthesized in the narratives of early-, middle-, and late-
stage Alzheimer's disease. The hermeneutic method, informed by archetypal
psychology, was used to interpret the data of the narratives.
The narratives describe a gradual shift in the caregiver's stance from shock
and despair—seeing the disease process as tragic and pathetic, to engagement with
the process—perceiving it as a descent into the underworld—inner depths. This shift
allowed the caregiver to understand symptoms as cryptic messages about inner
experience, which enabled better communication and care. The underworld
iii
dimension at the heart of the physical dimension was perceived when looking through
Persephone's eye at symptoms such as pleading eyes and agitated behavior.
The caregiver in the narratives was periodically drawn into the depths of the
caregiving experience, and was moved by these experiences. The researcher
concluded that surrendering to the depths leads to communion with the Alzheimer's
sufferer, and a deeper understanding of Alzheimer's disease. Using an archetypal
lens, surrender to the depths was interpreted as an enactment of Persephone's shift
from fear to love for Hades. This proved valuable in the research process and
meaningful in the researcher's personal life.
Use of the archetypal approach in this study led the researcher to the
underworld dimension inherent in the symptoms of Alzheimer's disease. The
underworld became a source of guidance in responding to symptoms. Treatment
using the archetypal approach emphasizes attunement rather than management, and
focuses on the symbolic meaning of requests made by someone like the resident of
the Alzheimer's facility who asks, "Can you give me a ride home?"
IV
DEDICATION
This work is dedicated to
Mike
with love and gratitude.
It is also dedicated to the memory of my mother, who taught me to value the
imaginal dimension, and who called me to bear witness to her journey through
Alzheimer's disease into death.
v
ACKNOWLEDGEMENTS
The seeds for this work were sown by my mother when I was a child. She
filled my world with stories of elves, trolls, witches, fairies and animals that talk and
have feelings. She set in motion the archetypal dynamics of the Demeter-Persephone
myth—a myth that she and I enacted in the physical dimension from my birth to her
death. In the background of this myth was a wise woman—my grandmother, an aunt
who was a great source of love and fun, and masculine figures—my father and
uncle—who played the role of Hermes by helping us move into and out of the
underworld.
The seeds planted by my mother grew into interest in stories and in what
motivates body language, behavior, and feelings. These interests led me to Pacifica
Graduate Institute in 1998, in search of what the universe was calling me to do. After
1 year of coursework, my mother drew me into her journey through Alzheimer's
disease. My work at Pacifica enabled me to see Alzheimer's disease from a depth
perspective and to participate in the sacred dimension of caregiving.
During this journey my mother and I were fortunate to encounter many
sensitive, professional caregivers among whom Sandi and Carmelina stand out
because they gave so whole-heartedly to both of us. We were also fortunate to have
the support of dear friends among whom Linda and Shelly stand out because of the
exceptional love and care they provided for Joey.
vi
As I began the writing of this dissertation, I was blessed with the guidance of
Mike Smith and the companionship of Track J at Pacifica, especially the friendship
and support of Renee Boblette and Gordon Lee. I was also blessed with a committee
who believed in the value of my work. My advisor, Joseph Coppin, was a steadfast
voice who balanced pushing me to do my best with allowing me to develop my way
of organizing the dissertation, and who conveyed positive regard for the quality of my
work. Cecile Carson, my external reader, became a crucial guide in so many ways.
Cecile exemplifies the best of the disciplines of traditional and alternative medicine,
and she helped me clarify the value and limitations of these disciplines. She pushed
me to go deeper into myself during the process of reflecting on my research.
Elizabeth Nelson, as coordinator of my committee, provided the counsel of a
professional author in guiding the dissertation process, and provided a careful
reading, discerning questions, and a sensitive response to my work.
I also want to acknowledge the role of Spencer Bloch, a very bright light
during the research and writing process. He was a most valued mentor whose
sponsoring supported my passage through the inner depths of this work.
Finally, I want to thank my family from the bottom of my heart. I am grateful
to my sister, Kendra, who came back into my life after my mother's death and, during
the writing of this, gave me encouragement from her great heart, and insights from
her fine mind. I thank my husband, Mike, and my sons, Michael, Peter, and Patrick,
for their generous hearts in helping me care for my mother, and in supporting my
vii
writing process and my defense of this dissertation. May the struggles and insights I
have recorded here support them during their encounters with the underworld.
viii
CONTENTS
COPYRIGHT NOTICE ii
ABSTRACT iii
DEDICATION v
ACKNOWLEDGEMENTS vi
CHAPTER 1 INTRODUCTORY REMARKS, LITERATURE REVIEW,
STATEMENT OF THE PROBLEM, AND RESEARCH QUESTIONS 1
Introduction 1
Literature Review 11
Introduction 11
Medical View of Alzheimer's Disease 15
Current Assessment and Treatment 16
Emerging Trends in the Medical Definition of Treatment 20
Evolution of the Medical View in the Context of Western Culture 26
Cultural View of Alzheimer's Disease 30
Current Methods of Diagnosis, Assessment, and Treatment of

Alzheimer's Disease 31
Evolution of Cultural Attitudes toward Aging and Alzheimer's
Disease 33
Survey of Descriptions of the Alzheimer's Experience Written by

Those Diagnosed in First-Stage Alzheimer's Disease 45
Survey of Accounts of the Experience of Caregiving for a Loved One

with Alzheimer's Disease 56
Survey of the Experiences of Professional Caregivers 78
Caregiving in the Final Stage of Alzheimer's Disease 90
ix
Psychological View of Alzheimer's Disease 101
Current Psychological Assessment and Treatment 107
Freud's Theory and Its Relevance to Treatment of Alzheimer's
Disease 112
Definition of the unconscious 112
Relationship between body and mind 114
Use of myth 116
View of death 117
Jung's Theory and Its Relevance to Treatment of Alzheimer's Disease 118
Use of myth 121
View of death 126
Hillman's Theory and Its Relevance to Treatment of Alzheimer's
Disease 127
Use of myth 130
View of death 132
Statement of the Problem and Research Questions 141
CHAPTER 2 METHODS 143
Introduction 143
Procedures for Gathering Data: Heuristic Theory and Methods 145
Theory 145
x
Methods 146
Procedures for Analyzing Data: Philosophical Tradition of Hermeneutic

Interpretation and Interpretative Approach of Archetypal Psychology 149
Philosophical Tradition of Hermeneutic Interpretation 149
Interpretive Approach of Archetypal Psychology 154
Limitations and Delimitations of This Study 161
Organization of Study 161
CHAPTER 3 EARLY-STAGE ALZHEIMER'S DISEASE 163
Narrative 163
Introduction 163
Biographical Background 165
Long-Distance Caregiving in the Early Stage of Alzheimer's Disease 177
Caregiving in California: Independent Living, Assisted Living,
Alzheimer's Facility 197
Reflection 203
CHAPTER 4 MID-STAGE ALZHEIMER'S DISEASE 218
Narrative 218
Introduction 218
Moving Into the World of Alzheimer's Disease 218
Qualitative Research into the Subjective Experience of Those Who Have
Alzheimer's Disease and of Their Caregivers 228
The Interviews 230
Discussion of Interviews 234

Observation and Participatory Research: Stories of Interactions with Those
in Middle-Stage Alzheimer's Disease 241
xi
Conclusions Drawn from Research 251
Deterioration in Middle-Stage Alzheimer's Disease 253
Reflection 276
CHAPTER 5 LATE-STAGE ALZHEIMER'S DISEASE 292
Narrative 292
Introduction 292
Enrollment in Hospice 292
Journal of Experiences While Living in an Alzheimer's Facility 293
The drive to Napa 293
Memories of her 293
Feelings about her 294
Arrival at the Vineyards 294
Final Months at The Vineyards 309
Life in The Hacienda 315
Reflection 351
CONCLUSION 372
Summary of Narrative Sections 372
Early Stage 373
Middle Stage 373
Final Stage 374
Summary of Reflections 376
Implications of This Study 380
Need for Future Research 384
Need for a Cultural Shift in the Treatment of Alzheimer's Disease 385
xii
REFERENCES 390
APPENDIX A LOVE STORY BY MAJORIE T. BLACKEN 397
APPENDIX B FIELD RESEARCH PROJECT: RESCUE QUESTIONS AND
APPROVED APPLICATION FOR USE OF HUMAN PARTICIPANTS 414
APPENDIX C LETTER FROM ANN CASON DATED JULY 9, 2002 421
APPENDIX D COMMUNION UNDER SPECIAL CIRCUMSTANCES 424
APPENDIX E "PREPARING FAMILY FOR THE DEATH OF A LOVE ONE" 427
APPENDIX F PAINTINGS—DEPICTION OF A DESCENT TO THE

UNDERWORLD 430
The style used throughout this dissertation is in accordance with the

Publication Manual of the American Psychological Association (5 Edition, 2001)
and Pacific Graduate Institute's Depth Dissertation Handbook (2008-2009)
xiii
CHAPTER 1
INTRODUCTORY REMARKS, LITERATURE REVIEW, STATEMENT OF THE
PROBLEM, AND RESEARCH QUESTIONS
Introduction
A resident in an Alzheimer's facility greets you with a question spoken in an
urgent tone, (iCan you give me a ride home? " Is this woman's question the
meaningless utterance of a demented elder, or a question with universal
significance? Is there comprehensible depth in the phenomenon of
Alzheimer's disease, or is this simply a disease which causes cognitive
deterioration and turns its sufferers into pathetic burdens of society?
Alzheimer's disease. These words stir anxiety—fear and horror—in the
contemporary mind. The dread is implicit in such simple statements we make about
illness as "My mother has terminal cancer. She's in pain, but fortunately, her mind is
still intact." Here, as in the perspective of the West, mind means the capacity for
rational thought, and is considered our most valuable faculty.
Described as a loss of identity and a living death, Alzheimer's disease, in
medical terms, constitutes an impairment of the cognitive function of the brain related
to the development of neurofibrillary tangles and amyloid plaques. When I asked a
respected neurologist what goes on in the mind of a person who has advanced
Alzheimer's disease she replied, "Nothing." This view echoes the Western, scientific
perspective which has dominated the fields of Western medicine, sociology, and
psychology, and has influenced the way these sciences understand and treat
2
Alzheimer's disease. In the view of the neurologist, absence of cognitive capacity was
interpreted as a complete absence of meaningful experience. In this study I use the
term Western cultural perspective to describe a dualistic perspective that defines
mind as cognitive function and considers physical and psychic aspects of humans and
of the cosmos to be separate phenomena, not different aspects of the same
phenomenon. The values I ascribe to the Western attitude stress the importance of
cognitive capacity, rational control, objective research, and medical treatment focused
on curing physical disorder.
This dissertation on Alzheimer's disease challenges the Western cultural
perspective not because it is inherently wrong, but because it is limited—one of many
possible views of this disease. Challenging the Western view is not meant to devalue
this view, but rather to point out limitations and present another view as a
complement to the perspective of Western culture. Many of the texts in the Review of
Literature point out how the fields of medicine, sociology, and psychology have been
influenced by dualistic assumptions of Western culture, and discuss how these fields
are endeavoring to respond to a cultural shift toward a more holistic understanding of
mind and body, and of disorders like Alzheimer's disease.
Physician Larry Dossey (1999), a pioneer in exploring the emotional and
spiritual aspects of mind and the importance of these aspects in the medical practice
of healing, offers the following description of a shift occurring in the medical field:
3
For more than a century the profession of medicine has tried to become
increasingly scientific and technical, because this is where we believed the
future of healing lay. Now a monumental shift is occurring, set in motion not
by physicians but by society at large. Currently almost half of adult
Americans visit a practitioner of alternative medicine yearly, (p. 227)
Dossey explains this shift as an acknowledgement of the importance of treating
illness in a context that includes spirituality and life meaning.
In describing the shift in American culture and in the field of medicine,
Dossey (1999) makes two important points that will be major themes in this study.
One is that the move toward embracing a holistic, spiritual orientation to life is an
embracing of ancient beliefs found in Greek, Hermetic philosophy and shamanism,
both of which see the mind as limited and infinite, human and divine (pp. 4-6). The
other crucial point is that the goal is not to replace the methods of Western science,
but to expand their scope. The modern medical model, with its focus on
understanding and treating the mechanics of the physical body, continues to make
major contributions to the treatment of illness, but this focus also has limitations.
Dossey points out that gene therapy, DNA manipulation, organ transplantation, and
computer-designed drugs have not had an impact on the largely ineffective treatments
for chronic, degenerative, and age-related illnesses (p. 21).
Dossey refers to orthodox medicine as internal medicine and medicine which
considers the spiritual dimension as eternal medicine, and emphasizes the
contribution of both modes to the practice of medicine and the value of integrating
these modes: "As a doctor, I've needed both internal and eternal medicine. So, too,
have most of my patients" (1999, p. 224). Dossey's description of a shift in Western

4
culture and in medicine offers hope that the assessment and treatment of Alzheimer's
disease will be expanded to include attention to the subjective experience of this
disease in addition to the physical symptoms and needs.
In this study I consider methods of assessment and treatment that focus on
subjective as well as physical needs. Methods of assessing subjective needs include
empathy and intuition, which attune to interactional, gestural, and imaginal
particulars of the experience of those who have Alzheimer's disease and of their
caregivers. Neurologist Oliver Sacks (1990) suggests the following expansion of the
traditional medical view to include a subjective assessment:
To restore the human subject at the centre—the suffering, afflicted, fighting,

human subject—we must deepen a case history to a narrative or tale; only
then do we have a 'who' as well as a 'what,' a real person, a patient in relation
to the physical, (p. viii)
What would we see if Alzheimer's disease were viewed using subjective
methods of assessment? What might a subjective assessment conclude about an
elderly woman who puts her iron in the freezer, wears three bras at one time, uses red
lipstick as an eyebrow pencil, and walks for hours in the middle of the night in
agitated confusion? Is there a way of perceiving that understands mind to be more
than cognitive capacity? As the daughter of the woman just described, I have come to
believe that those diagnosed with Alzheimer's disease, as well as their caregivers,
need a different way of viewing this disease, a deeper understanding which could well
enrich the more confined vision of traditional Western culture.

5
Developing a deeper understanding of the process of dying, including the
cognitive decline specific to the dying process of Alzheimer's disease, requires that
we expand our limited view of human experience. An expanded view would include
knowledge of the underworld of dying and death as well as the outerworld of growth
and development, and attunement to the subjective and metaphoric meaning of
gestures and symptoms as well as to literal and logical meanings. Only when we
expand our view of human experience to include dying and death, and when we
attend to subjective as well as objective data, can we respond with attunement and
empathic engagement rather than insensitivity and ostracizing disdain toward those
who are experiencing cognitive impairment and decline.
In my effort to delve into the complexity of Alzheimer's disease, a central
goal has been to supplement the assessments of physiological deterioration which
focus on loss and absence of cognitive capacity, with qualitative methods of assessing
the presence of social and psychological capacity. In a comment on an Alzheimer's
patient, geriatric physician Muriel Gillick (1999) speaks to the limitations of the
medical profession in assessing Alzheimer's disease: "I saw her through the lens of
medicine. I tended to focus on her deficits: I was forever characterizing, naming, and
measuring what she could not do" (p. 169).
I experienced this emphasis on deficit during five medical assessments of my
mother. These assessments involved tests to rule out other organic causes for her
symptoms and the administration of the Mini-Mental-Status Exam. Western medicine

6
uses the Mini-Mental Status Exam as an initial screening instrument to assess
cognitive capacity in a patient. A low score indicates diminished cognitive
functioning. This exam is a valuable tool in differentiating between dementia and
pseudodementia, and in tracking cognitive decline. During one assessment of my
mother's cognitive capacity, as a nurse administered the Mini-Mental Status Exam I
focused on a qualitative assessment of her capacities, paying attention to her facial
expression, body language, tone of voice, and the syntax and choice of words in her
responses. The result of this exam was a medical assessment which took the form of a
numeric score, interpreted as cognitive decline, likely a result of degeneration of
neurons in the brain. Assessment using qualitative methods took the form of
interactional and gestural data ("Why are you asking me what season we're in? I
think you know the answer to that question." She was looking directly at the nurse
with a half-smile.). She was aware of and mildly amused that her mental faculties
were being tested in this way. The interpretation of this data was based on attunement
to nuances, and intuitive and empathic perception.
I witnessed many examples of caregivers overlooking subjective data while
talking at Alzheimer's residents and making a point of their faulty memories. My son
told me about a visit with his grandmother. He was sitting next to her, and a caregiver
persisted in quizzing her about his name: "Who is this, Marge?" He said that her
facial expression changed from smiling at him, to a look of confusion, to a look of
dejection. This caregiver was not attuned to facial expressions. The language of the
7
body is varied and often subtle; thus those who assess, treat, and care for people with
Alzheimer's disease often miss subtle clues about subjective—inner—experience,
and conclude that there is nothing going on. I observed many very attuned caregivers
who were able to discern the difference between expressions of pain and frustration.
These caregivers responded to frustration by taking time to talk with and soothe the
person, rather than by administering a pill to relieve pain or anxiety.
The subjective experiences of shame and fear stirred by cognitive decline are
compelling themes in many autobiographies of people in the early stage of
Alzheimer's disease. The fear intensifies with increasing loss of control of personal
affairs and of body functions. Alzheimer's disease often presents with an image of
agitation. A frantic, pacing elder is losing control and feels fear, humiliation, and
despair. Many who witness the symptoms of Alzheimer's disease, even caregivers,
are shocked and recoil in the face of confused, agitated behavior. A different
perspective on Alzheimer's disease may provide caregivers a level of both
understanding and support that will in turn enable dependent elders to feel trust rather
than fear, acceptance rather than humiliation, and a sense of peace rather than despair.
The purpose of this dissertation is to examine Alzheimer's disease from the
perspective of depth psychology. This perspective analyzes visible behavior, literal
descriptions, and logical explanations in order to discern metaphoric and symbolic
meanings. It considers that there are dynamic, autonomous forces within our
unconscious which inform our body, motivate our behavior, and influence our
8
conscious mind. Examples of this perspective would be probing the mystery of what
stirs unexpected joy or tears at the level of daily experience, and an exploration of the
underlying dynamics of hysteria and schizophrenia at the clinical level. The definition
of unconscious in this study is based on Carl Jung's theory that the unconscious
includes a personal unconscious—all that a person has experienced but forgotten or
repressed, and a collective unconscious—inherited, universal contents defined in
Jung's theory as instincts and archetypes. In Jung's theory the collective unconscious
is the organizing source of subjective experience. This theory and its relevance to a
study of Alzheimer's disease will be described more fully in the psychology section
of the Literature Review.
During the years of my mother's decline, I drew on my training in depth
psychology to try to understand her curious behavior—especially her movement back
and forth between engagement and disengagement with the outerworld. When she
was in the middle stage of Alzheimer's disease, she often spent hours during the night
in agitated wandering, picking up objects such as shoes and framed pictures and
putting them in odd places like dresser drawers. When she had declined to a point
where she lost her facility with words, she would surprise me with a coherent
outburst. In response to a brusque caregiver she responded with a defiant "Don't do
that," and to an intense daughter trying to take an empty glass from her, with a fierce
"No!" I have heard many stories from family members whose loved one was in the
9
final stage of Alzheimer's disease, and had been unable to speak for months, but
somehow managed to make a coherent statement.
One story was told by a woman who spent 3 days each week in her elderly
mother's room in a nursing home. Her mother was in the final stage of Alzheimer's
disease and spent most of her time lying in bed with a vacant stare. The daughter
spent the day working at her computer. One day, about 2 weeks before the mother's
death, the mother turned to her daughter and expressed gratitude for all the help her
daughter had given. The mother then lapsed back into her vacant stare.
I had a similar experience with my mother. About 2 months before she died, I
was sitting by her bedside at 8:00 in the evening. She had been given Ativan, an anti-
anxiety and hypnotic medication, to help her sleep, and I had put some soothing
music on her CD player. She was gritting her teeth, and I was concerned that she
might be feeling pain or anxiety. I sat quietly hoping she would fall asleep. After 30
minutes, she showed no sign of getting sleepy and was gritting more intensely. I
leaned over her face and asked her if she were in pain. She paused from her gritting
and then shook her head to indicate "no." I then asked if she were afraid. She didn't
answer, but looked irritated and gritted more intensely. I said, "Do you want me to
leave?" She responded quickly and intensely, "Yes, I do!" She not only found the
words she needed, but put them into a complete sentence which communicated strong
feeling, a sense of identity, and comprehension of what she wanted.

10
As my mother moved into the final stage and spent increasing periods of her
waking time staring into space, there were times when she was sitting alone with no
obvious engagement with the outer world, and she would laugh and smile. What
stimulus motivated these behaviors? Was it the result of random synapses firing, of
memories and feelings triggered? Where was my mother when she was not engaged
with the outer world? Was she engaged with memories, with another dimension of
reality? What caused her to laugh and smile at these times?
These questions arose in my relationship with my mother and are leading me
to do research that deepens my understanding of Alzheimer's disease. The search for
depth of understanding poses unique challenges to a researcher. How does one listen
differently from a depth perspective? How do I look differently at what I see, if I use
a depth psychological lens? How can I discover and reveal the complexity of
Alzheimer's disease? Is it a means of leave-taking, of healing, of reconciling, of
atoning? Is Alzheimer's disease a threshold between two worlds or dimensions? Are
people with Alzheimer's disease simply stuck in a liminal place, or are they engaged
in a meaningful process? How do personality and personal history affect an
individual's experience of Alzheimer's disease? Do the increasing numbers of
demented elders bring an increasingly significant message to our culture? Could we
learn about out of body experiences and nonordinary dimensions of reality by
understanding the least rational among us? How is Alzheimer's disease viewed in
other cultures, in ancient myths, and in novels and nonfiction How does Western
11
culture's attitude toward cognitive decline, decay, and death affect the experience of
Alzheimer's disease? All of these questions, of course, bear on the most important
practical questions of how caregivers can discern and meet psychological and
spiritual needs of those who have Alzheimer's disease, and whether intervening more
effectively would actually reduce the emotional toll on caregivers.
This study of Alzheimer's disease grew out of an earlier research project using
data from interviews with family and professional caregivers and members of the
staff of an Alzheimer's facility, as well as data from participatory research (see
Appendix B: Field Research Project—Approved Application for Use of Human
Participants). This earlier research data addressed some of the questions that will be
considered in this dissertation, and will be incorporated as an unpublished text in the
Literature Review and as a heuristic subtext in the narratives. I draw from the data of
the interviews and participatory research in the heuristic depiction of my experience
with my mother and in the hermeneutic reflections on my personal experience.
Literature Review
Introduction
This study of Alzheimer's disease centers on my experience with my mother's
journey through the stages of this disease. From the day I learned that she had been
transferred from an apartment on the assisted living side of her residence to an
apartment in the Alzheimer's wing, I felt a compelling urge to read about Alzheimer's
disease. I had a mild curiosity about the physical pathology of Alzheimer's disease—
12
mild because there was no chance of a cure for my mother. I had a moderate curiosity
about the neurological implications of Alzheimer's disease. I wanted to know how
this disease would affect my mother—what would the progression look like? I not
only read about the neurological impact of Alzheimer's disease, but also consulted a
neurologist and a geriatric psychiatrist. I had an intense interest in literature about
caregiving, and began collecting books, articles, and stories about how others have
cared for someone with Alzheimer's disease. I also conducted a research project in
which I interviewed the staff of an Alzheimer's facility and family members of some
of the residents of the Alzheimer's facility, and volunteered in the facility as a way of
doing participatory research into the experience of Alzheimer's disease. The data
from this research project will be included in this study.
The initial focus of my avid search for information was on how to care for a
loved one who has Alzheimer's disease. I read books written by professional
caregivers, but my first question when I encountered a new text written by a family
caregiver was, "Did you care for your loved one at home, and if so, how did you do
it?" I was hungry for information about caregiving for demented elders. How had it
been done in the past? How was it done in other cultures? How were others doing it
in my culture? I discovered texts and actual examples of caregiving that were
informed by an understanding of the complexity of dementia, but these examples
were exceptions to the typical attitudes, my own included, of discomfort and disdain
toward those with dementia. In my initial research, I found a preponderance of

13
negative attitudes, and of caregiving that was burdened by the overwhelming physical
demands, leaving little time and energy for attunement to psychological and spiritual
needs.
As my mother moved through the stages of Alzheimer's disease, her level of
functioning declined slowly and steadily. I watched her become unable to converse,
to control her bowels and bladder, to feed herself, and, finally, she became unable or
unwilling to swallow. Her body became gradually less animated, with increasing
periods of a trance-like state. During the last stage, I shifted my focus from literature
on caregiving to resources that spoke to the complexity of the Alzheimer's disease
experience, including discussions from medical, sociological, anthropological,
psychological, and spiritual perspectives on dementia and on dying and death. I
attended several lectures and conferences on subjects related to understanding the
experience of Alzheimer's disease, and sought consultation with several professionals
whose knowledge I hoped might be a resource. My mother's experience of
Alzheimer's disease was compelling. I sought resources that would address the depth
of this compelling experience
I have organized the literature I consulted for this study into three categories:
the medical view, the cultural view, and the psychological view. Each of these views
offers a unique way of understanding the experience of Alzheimer's disease. Some of
the texts I consulted fit into two or all three categories, and served my goal of
developing cross-pollination among different views and of discovering holistic

14
approaches to this disease. Cross-pollination happens when data in one field has a
significant impact on—alters or deepens—the meaning of the data in another field.
For example, the groundbreaking work of neurologist Oliver Sacks has provided a
model for expanding an assessment of neurological disorders to include subjective as
well as objective data. Sacks uses his knowledge of neuropathology to understand the
impact of a patient's physical symptoms on psychological experience.
More recent publications in all three categories of literature demonstrate a
shift toward a more humanistic view of dementia and toward exploring more effective
means of assessing and treating the subjective as well as physical experience of those
with Alzheimer's disease. In the medical field this trend can be seen in the expansion
of the definition of treatment to include a consideration of subjective experience. In
the cultural view the shift can be seen in changing attitudes toward the relationship
between mind and body, death and life. In the psychological view, the shift is evident
in the expanded definition of mind as something more than cognitive function. These
changes, I believe, will engender empathy and sensitivity in the culture generally, and
in caregivers particularly, toward those who have Alzheimer's disease. My
relationship with my mother was close and loving when I found ways to
communicate with her. Successful communication was often related to my attitude
toward her. It was difficult to communicate with her when I was anxious or impatient,
seeing her as mentally deficient, and easier when I relaxed and saw her as my mother.
15
The resources included in the sections on the medical, cultural, and
psychological views comprise the Literature Review—the backdrop for this study of
Alzheimer's disease. These resources were chosen because they are representative of
a body of knowledge that informs the current methods of assessment and treatment in
these three fields as well as evolving trends in treatment, and describe the historical
context of the development of the Western cultural attitude toward dementia and
dying. This literature reveals a lack of attention to the inner experience of
Alzheimer's disease, and a lack of effective methods for assessing and treating the
inner needs of those with this disease. The resources in the psychology section of this
review describe methods of depth psychology which, I believe, can be used to
understand and treat the inner needs of those with Alzheimer's disease. Although
examples of the use of depth psychological techniques in the treatment of
Alzheimer's disease can be found in this Literature Review, and in the narrative of
my personal experience with my mother, there is no formal description or exploration
of the effectiveness of these techniques in discussions of the treatment of Alzheimer's
disease.
Medical View of Alzheimer }s Disease
The literature on Alzheimer's disease reveals an on-going shift in the medical
field from a view more narrowly focused on the physical body to consideration of
subjective experience as well as psychosocial methods of treatment. A number of
authors within the medical field have advocated for an expansion of a disease-
16
oriented model focused on technological proficiency, clinical practicality, and
diagnostic accuracy, to a model that includes the subjective experience of the
individual patient in the assessment and treatment of disease.
The discussion of the medical view of Alzheimer's disease is divided into
three sections. The first section focuses on current assessment and treatment, and
includes the biology of Alzheimer's disease only as it relates to diagnosis and
treatment. The second section discusses emerging trends in the medical field's
definition of treatment, and the third section discusses the evolution of the medical
view in the context of Western culture. The texts in the second and third sections
address the paradigm that shapes the medical field's methods of assessing and
treating Alzheimer's disease.
Current Assessment and Treatment
The current understanding of Alzheimer's disease derives from the work of
Alois Alzheimer. Because there was no treatment for dementia, Dr. Alzheimer
admitted his patient, Frau D., to an asylum in 1901, where she could receive custodial
care. She died in the asylum in 1906. During an autopsy on Frau D., Dr. Alzheimer
discovered plaques and tangles in her brain and concluded that this pathology was the
cause of her dementia. This story reflects the prominence of the traditional Western
cultural assumption that mental disorders are the product of a diseased brain, and that
medical treatment means curing the physical body (Gillick, 1999 p. 32).
17
The shift to an expanded definition of treatment for Alzheimer's disease can
be seen in differences between the 1988 and 2003 editions of Kaplan and Sadock's
Synopsis of Psychiatry: Behavioral Sciences: Clinical Psychiatry. In the 1988 edition
treatment is described in the following paragraph:
There is no specific treatment for PDD of the Alzheimer's type. Experimental

drugs have been tried with mixed results, the latest being
tetrahydroaminoacridine (THA), which influences acetylcholine metabolism.
Ultimately, all patients require institutionalization or 24-hour custodial care
owing to the severe psychological and physical deterioration that accompanies
the disorder. Maintenance of physical health, supportive environment, and
symptomatic psychopharmacologic treatment are indicated. (Kaplan &
Sadock, 1988, p. 204)
This text is a core resource in the medical field, and the phrase "no specific
treatment" is consistent with Western medicine's view that treatment means cure.
In the 2003 edition of this text, the description of treatment is given one page,
instead of one paragraph, and includes an explanation of psychosocial therapies,
pharmacotherapy, and drugs being tested for cognitive-enhancing activity. In this
more recent edition, the description of treatment begins with the comment that
accurate diagnosis is imperative, and then proceeds with a discussion of treatment
options. Under the heading Psychosocial Therapies, the following comment indicates
that attention to the psychological meaning of dementia for the patient is a central
consideration in treatment:
The deterioration of mental faculties has significant psychological meaning

for patients with dementia. The experience of a sense of continuity over time
depends on memory. Recent memory is lost before remote memory in most
cases of dementia, and many patients are highly distressed by clearly recalling
how they used to function while observing their obvious deterioration. At the
most fundamental level, the self is a product of brain functioning. Patients'
18
identities begin to fade as the illness progresses, and they can recall less and
less of their past. Emotional reactions ranging from depression to severe
anxiety to catastrophic terror can stem from the realization that the sense of
self is disappearing. (Kaplan & Sadock, 2003, p. 341)
In this more recent edition of the text, the psychological experience is not only
mentioned but is a central focus of treatment. The statement that "at the most
fundamental level the self is a product of the brain" will be challenged in succeeding
sections of this study.
Under the heading of Pharmacotherapy», the 2003 edition of Kaplan and
Sadock's text describes the use of benzodiazepines for insomnia and anxiety,
antidepressants for depression, and antipsychotics for delusions and hallucinations,
and warns clinicians to be aware of idiosyncratic drug effects in older people. Under
the heading of Other Treatment Approaches, the 2003 edition describes drugs that are
being tested for cognitive-enhancing activity—selegiline and memantine—and
explains that these medications do not prevent the progressive neuronal degeneration
of the disorder (p. 341). The fact that these FDA-approved, cognitive-enhancing
drugs are still in an early stage of use by practitioners is evident in the following
responses to a Forest Laboratories web site (DECAID, 2004). Physicians contributed
the following comments on Forest's new product, Namenda (a brand name for
memantine): "I prescribed Namenda six times this past week, and I am anxious to see
how well it works first-hand," and "I am finding family members of my patients have
been asking me to prescribe that 'new drug' for Alzheimer's" (p. 1).
There is considerable research underway in the field of medical science to find
a cure for Alzheimer's disease. This research holds center stage in the public
19
awareness of medical treatment for Alzheimer's disease, and is often misunderstood
in terms of the effectiveness of new medications and in terms of the potential for stem
cell research. Media reports often overlook psychosocial methods of treatment. In
There's Still a Person in There (1999), Castleman, Gallagher-Thompson, and
Naythons comment on this confusion in media reports:
Media reports of Alzheimer's treatment focus almost entirely on drugs,

practically ignoring the psychological and social approaches to treatment.
Medications are certainly important but there's more to treating this disease
than just drugs. Like current medications, psychosocial therapies do not halt
or reverse cognitive decline, but like the latest drugs, they can slow it down,
help preserve remaining cognitive abilities, and improve quality of life for
both Alzheimer's sufferers and their caregivers, (p. 157)
For a more comprehensive understanding of the medical view, Sherwin
Nuland's How We Die (1994) addresses the problems faced in Western medicine's
struggle with a devastating disease for which neither the cause nor the cure are
known. He writes:
There are no consolations in the diagnosis of Alzheimer's disease. The

anguish may be mitigated by good nursing care, support groups, and the
closeness of friends and family, but in the end it will be necessary for patient
and loved ones together to walk through that very tortuous valley of the
shadow, in the course of which everything changes forever. There is no
dignity in this kind of death, (p. 117)
Nuland's expression of frustration and his interpretation of the experience of
Alzheimer's disease is challenged by geriatric physician Muriel Gillick (1998), who
offers another view of the Alzheimer's disease experience:
From the point of view of the person with dementia, the failure to understand
that one has a progressive brain disease may be the saving grace of the
disorder. It allows that individual to enjoy his meals and the attention of his
family, to sit peacefully tapping his foot to rhythmic songs on the radio, and to
savor the excitement of soap operas on television . . . any presumption,
20
however, that the severely demented person is suffering by virtue of his very
existence is a projection of our own dread at his condition, (p. 221)
Nuland's (1994) view of Alzheimer's disease is similar to his view of the
mechanics of the dying process. Based on his clinical experiences, he concludes that
most people do not have much choice in the way they die, and he points out a contrast
between the medieval concept of ars moriendi, the art of dying, and the contemporary
art of saving life:
As recently as half a century ago, that other great art, the art of medicine, still
prided itself on its ability to manage the process of death, making it as tranquil
as professional kindness could. Except in the too-few programs such as
Hospice, that part of the art is now mostly lost, replaced by the brilliance of
rescue and, unfortunately, the all-too-common abandonment when rescue
proves impossible, (p. 265)
Alzheimer's disease is seen by Nuland as dreadful, not because of physical
pain, but because there is loss of cognitive function and ensuing death. Nuland
emphasizes the value of Hospice, which is an area in the field of medicine where the
definition of treatment is expanded beyond cure to include attention to inner
experience. Treatment in the expanded definition involves more than medications for
symptom relief. Hospice treatment includes spiritual and psychological counseling
and provides care and support when cure is impossible and death is expected within 6
months.
Emerging Trends in the Medical Definition of Treatment
As a spokesperson for the concept of ars moriendi, and for a paradigm of
treatment that includes attention to subjective experience as well as physical
pathology, physician Michael Kearney (2000), consultant in Palliative Medicine in

21
Ireland, discusses treatment informed by the concept of the art of dying as a
complement to the approach of medical science in the field of care for the terminally
ill. Based on his persuasion that human distress such as psychological and existential
suffering is not always responsive to the interventions of the medical model, Kearney
advocates a treatment model he calls the "healing model," as a complement to the
medical model. He uses psychological, scientific, and historical perspectives to draw
a comparison of these two models.
Using a psychological perspective, he aligns the medical model with the mode
of normal ego function in the conscious mind, and the healing model with the mode
of the unconscious. In Kearney's comparison, the conscious mind, which he calls the
"surface mind," is similar to the medical model in that its mode is rational and
literal—using words to communicate logical concepts, and using the capacity to
separate and analyze. This mode is the consciously aware, discriminating mode.
Kearney (2000) contrasts the surface mind with "deep mind"—the normally
unconscious and intuitive aspects of mind. The deep mind, according to Kearney, is
connected to the emotions and to the physical body and uses a vocabulary of image,
symbol, and myth to communicate depth of meaning and to integrate experiences. He
cites dreams and imaginative activities as examples of this mode and speculates that
the discomfort of the medical profession with the healing mode is similar to the fear
of the ego at facing the depths of the unconscious which, Kearney believes, is in
essence the existential human fear of death (pp. 16-17).

22
To further illustrate the difference between the two treatment models, Kearney
(2000) shifts to a scientific perspective and aligns the medical model with classical
physics and the healing model with new physics. He explains that the evidence-based
medical model derives from classical physics, characterized by a mechanistic
paradigm and by objective observation and analysis of concrete data. The healing
model, in contrast, derives from new physics—relativity and quantum theories which
focus on matters of degree (shades of gray between black and white), and on quantum
vacuum and field which are "not empty but replete with potentiality, and on particles
which are discrete and waves which connect and merge, and with a participatory
universe where the observer is not separate from the object" (pp. 22-23).
To complete his comparison of the two treatment models, Kearney (2000)
uses a historical perspective. He explains that these two models of understanding
illness are rooted in two schools of Greek medicine which, for a time, operated in
harmony with each other: the mode of Hippocrates, where every symptom had a
natural cause, and the Asclepian mode, which understood that illness was caused by
gods and therefore needed a divine cure (pp. 15-33). Kearney speaks to the
limitations of the medical model and the value of including the healing model in
medical treatment.
Larry Dossey, in Reinventing Medicine (1999), also studied the medical model
in relation to other modes of treating illness. Dossey developed a theory of medical
models that bears some similarities to Kearney's models. Dossey describes the
23
evolution of medical science in terms of Eras I, II, and III. In Era I, 1860s to post-
World War II, medicine became a science and focused on the body as a mechanical
object and mind as a function of brain mechanisms. Era II medicine developed in part
as an effort to explain shell-shock, and began to incorporate attention to the impact of
emotions (one's mind could affect one's body, as well as one's body affecting one's
mind) and to incorporate the new theories of the unconscious. Dossey calls Era II
mind-body medicine. Era III medicine, like Kearney's healing model, derives from
theories of new physics. Dossey looks particularly at the work of physicist Nick
Herbert on nonlocality (p. 26). In comparing the relationship of mind to body in the
three eras of medicine, Dossey explains that in Era I, mind is a result of brain
mechanisms; in Era II, mind has causal powers and is a major healing factor within a
single person, and in Era III, mind is not localized in bodies or in time, and is a factor
in healing both within and between persons (p. 19).
In an email exchange with physician Cecile Carson, Clinical Associate
Professor of Medicine and Psychiatry at the University of Rochester Medical Center
and advocate for the importance of the mind-body-spirit interface in the practice of
medicine, I received the following comparison of Dossey's three eras of medicine—
named by Dr. Carson the biomedical, biopsychosocial, and transpersonal models of
health care:
MODELS OF HEATH CARE
Biomedicine Biopsychosocial Medicine Transpersonal Medicine

Focus of Diseases, rational Patient in context of multiple Meaning; deep connection
Attention thought, objective data interacting systems; subjective with the patient without
24
- objective; rational + expectations or judgment

emotional
Foundation "What's wrong?" "Why this illness in this person "What's happening in this
Question "Where does it hurt?" now" "How has this affected moment?" What's
you?" unfolding?" "If this
symptom had a voice, what
might it be saying?"
Clinician Task Diagnose and fix the Identify the key disturbance in Witness the suffering; be
disorder of the body; the system; support the present to the patient's
restore normalcy psychological and social; create wholeness; be present to
a partnership; negotiate; help what is unfolding - for the
patient, for you, and the
relationship; accept what is;
serve
Clinician Detached observer Participant observer Deep exchange beyond role
Attitude with boundaries; shared
Patient humanness; a willingness to
be changed by the patient
Source of Professional expertise Patient and clinician in Symbols & metaphor,
Guidance and mastery collaboration intuition, hunches, dreams,
synchronicity (meaningful
coincidences),
consciousness beyond a 3-
dimentional framework
This chart from the work of Cecile Carson, MD (6/06) used with permission, (adapted from A. Suchman, M.D.)
In discussing her use of the transpersonal model of health care, Dr. Carson recalls
becoming aware early in her medical career that she knew a lot about medicine, but
nothing about healing. In her article "Shamanism and the Medical Encounter" (2002),
Dr. Carson describes her training in and use of shamanism, as well as other forms of
transpersonal healing. She explains that the shaman is one who journeys in expanded
consciousness, using altered states of consciousness to make a connection with this
nonordinary dimension of consciousness and then allowing the power and
compassion of Spirit to flow through him. Carson asks, "What would it mean for
health-care training and practice to take this a step further, beyond the clinician's and
the patient's individual egos and five senses, to open together to guidance from
another dimension that can be far wiser than either of them alone?" (p. 6).
25
The theory advocated by Dossey and Carson, in which the transpersonal mind
is nonlocal and a factor in healing between persons, supports the importance of
empathic and intuitive methods of assessing and caring for those with diminished
brain function. Jungian analyst Arnold Mindell (1989) was also influenced by
theories of new physics and focused on the importance of empathy in his work with
coma patients. Mindell studied the effect of the observer on the observed and
discovered ways of communicating with coma patients using techniques that require
attention to the language of the subtle body. Mindell asserts that many people going
through altered states need help to realize their total selves (p. 102).
As stated in Dossey's comments in the introduction, the trend described by
authors in this section is toward expanding the definition of treatment so that it
includes not just the Era I focus on the mechanical body, but also the perspectives of
Eras II and III which consider the psychological (subjective) and spiritual
(transpersonal) aspects of illness. The terms psychological, depth psychological,
transpersonal, and spiritual will be defined and discussed in the section on the
psychological view of Alzheimer's disease. Briefly, the term psychological refers to a
study of the mind—subjective (inner) experience; depth psychological refers to the
branch of psychology that focuses on the unconscious dimension of inner life; and
transpersonal and spiritual are used interchangeably to refer to a dimension of reality
that is transcendent—a dimension experienced as an expanding beyond the limits of
personal self into nonordinary, nonlocal reality.

Evolution of the Medical View in the Context of Western Culture
The texts discussed in this section describe two streams of thought regarding
the definition of mind in the development of Western cultural attitudes: the scientific
stream, focused on the precision of objective, quantitative knowledge; and the
philosophical stream, focused on the complexity of subjective, qualitative knowledge.
Medical scholar Roy Porter, in Madness: A Brief History (2002), offers
insights in the discussion of these two streams of thought. In tracing the evolution of
medical science—from Hippocrates and his naturalistic theory of humors, through the
Middle Ages when monks added folk beliefs and customs to the theory of humors,
and through the Enlightenment when Descartes concluded that mind was immaterial
but "docked with the body at the pineal gland" (p. 57)—Porter notes the
inconsistency in the Enlightenment view that the mind is separate from the body, yet
that mental illness is the result of a flaw or dysfunction in the body (p. 57). His
discussion describes the increasing influence, as Western culture developed, of the
scientific stream of thought on medical science, and the increasing focus of medical
science on the organic body.
Porter (2002) describes the 1800s as a time when German psychiatry became
a battleground where the two streams of thought were framed as rival theories: the
organic theory of mental illness and the psychological theory of mental illness. Emil
Kraeplin, mentor to Alois Alzheimer, was a foremost proponent of the organic theory,
and Sigmund Freud, a foremost proponent of the psychological theory, thus

27
Kraeplin's antagonist. Porter also describes several theorists who tried to integrate the
organic and psychological theories about mental illness, one of whom, Jean-Etienne
Esquirol, considered mental illness to be organic in nature, but concentrated on
psycho-social triggers. Porter concludes that "psychiatry remains torn between
biopsychosocial and medical models, both of its object and of its therapeutic
strategies" (p. 217). In this comment Porter underscores the separation between the
psychosocial view and the medical view of illness.
In her comprehensive study of Alzheimer's disease, geriatric physician Muriel
Gillick (1999) speaks to the separation between the medical and psychological
concerns. She explores the negative attitude toward Alzheimer's disease that is
typical in the medical view of senility, observing that modern medicine likes curable
diseases, and concludes her study by explaining a change in her attitude toward
Alzheimer's disease. She perceived only the negative aspects of Alzheimer's disease
when she began her study, but as a result of her study, came to realize that in the
contemporary medical attitude toward this disease there is a flaw typical in modern
medicine—the flaw of excluding psychosocial concerns: "the scientific goal of
understanding often is distinct from the clinical goal of effectively treating real people
with real problems" (p. 180). This theme is also articulated in the conclusion drawn
by David Shenk's depiction of Alzheimer's disease in The Forgetting (2001). Shenk
comments, "the scientific war on Alzheimer's loses sight of the disease's humanity"
(p. 235).
28
The texts cited in this section represent the wealth of resources which discuss
the contributions, limitations, and emerging trends in the medical view of
Alzheimer's disease. The following two resources offer insights that are most
pertinent to this study's goal of including subjective experience in the assessment and
treatment of this disease. Oliver Sacks (1990) proposes that stories are a bridge
between the scientific and philosophical streams of thought—between organic and
psychosocial views of disease, emphasizing the importance of the narrative
component in a patient's case history:
The patient's essential being is very relevant in the higher reaches of

neurology, and in psychology; for here the patient's personhood is essentially
involved, and the study of disease and of identity cannot be disjoined. Such
disorders, and their depiction and study, indeed entail a new discipline, which
we may call the 'neurology of identity', for it deals with the neural
foundations of the self, the age-old problem of mind and brain. It is possible
that there must, of necessity, be a gulf, a gulf of category, between the
psychical and the physical; but studies and stories pertaining simultaneously
and inseparably to both . . . may nonetheless serve to bring them nearer, to
bring us to the very intersection of mechanism and life, to the relation of
physiological processes to biography, (p. viii)
The narrative holds the complexity, the nuances, and the cues for how to interpret and
treat the physical symptoms of the human being who is interwoven with the
mechanics of a particular body.
This emphasis on the importance of narrative has been a central focus for Rita
Charon, MD, PhD, who established the Narrative Medicine Program at Columbia
University's College of Physicians and Surgeons in 1996. Dr. Charon (2006) a central
voice in the emerging trend of reinterpreting traditional notions of caregiving and

29
treatment in medicine, explains that narrative medicine grew out of such movements
as patient-centered care and medical humanities. Charon comments that narrative
medicine developed at Columbia "in part because our departments of English and
Creative Writing are well-connected to our medical school. . . . We give medical
school credit to medical students who enroll in courses on the main university campus
in humanities departments. . . .We already know that humanities majors do as well as
science majors on such measures as board exams and medical school grades"
(online).
Charon (2006) speaks to the mind-body connection that will be a central focus
of attention in this study when she mentions that "the body, it turns out, is the portal
to the self, and caring for the ill body can open the door to a moving and healing
intimacy with the self. As one diagnoses and manages the asthma, the cancer, the
dementia, the alcoholism, one realizes and enters into relation with the full self of the
patient—the hopes, the dread, the strengths, the dreams" (online).
In an article titled "Narrative medicine creates alliance with patients," Dr.
Charon provides an introduction to the theory underlying narrative medicine as well
as a practical guide for implementing narrative methods in health care. Charon (2006)
explains that
Narrative medicine takes those skills that one develops as a close reader or a
reflective writer and bends them toward effective clinical practice. .. . The
close reader identifies the images and metaphors, recognizes the temporal
flow of events, follows allusions to other stories, and is imaginatively
transported to wherever the story might take the one who surrenders to it.. ..
By listening with the close reader's attention, he or she can hear and receive in
full complexity what the patient conveys in words, silences, gestures,
positions and physical findings (online).
The emphasis in the work of Sacks and Charon on story (narrative)—as a
bridge between mind and brain, self and body, promotes the inclusion of subjective
experience in an expanded definition of medical treatment. These two physicians, as
well as Dossey, Carson, and Kearney, represent growing support among physicians
for alternative medicine, or, in terms used by these physicians, a healing model as a
complement to the traditional medical model which includes the psychological and
transpersonal dimensions in the assessment and treatment of a patient's disease.
Cultural View of Alzheimer's Disease
Lela Shanks sought consultation with physicians when it became obvious that
her husband, Hughes, had a serious problem. In the following comment, Lela Shanks
(1999) gives a compelling account of her experience with contemporary methods of
diagnosing and treating Alzheimer's disease. She was told:
I could expect him to deteriorate mentally and physically over an

indeterminate amount of time until he became totally helpless and dependent.
They said there was no cure and nothing they could do. As for medication I
was given the name of one drug described as very expensive and very
ineffective. We were sent home without any instructions, references, or
suggestions as to how to proceed or where to go for help. I assumed that the
doctors had provided me all the information they had available at the time. (p.
1)
The literature which informs the cultural view of Alzheimer's disease in this
study addresses Shanks's experience by exploring the cultural milieu of Alzheimer's
disease. The texts in this section discuss the contemporary definition, means of
assessment, and treatment methods in the field of caregiving, as well as the evolution
of the contemporary, Western, cultural attitude toward aging in general and

31
Alzheimer's disease in particular. The texts are arranged in subsections, each of
which provides a piece that contributes to the contemporary cultural understanding of
Alzheimer's disease. Embedded in the issues discussed in each of the subsections of
this view are questions about mind. What constitutes mind? Is it just, or more than,
cognitive function? What is mind's relationship with body, and how does this issue
affect those diagnosed with Alzheimer's disease and their caregivers? Another crucial
question that is addressed in the discussion of cultural attitudes to the decay of the
aging process and to dementia is the question of the impact of the cultural attitude on
those diagnosed with Alzheimer's disease and on their caregivers.
Current Methods of Diagnosis, Assessment, and Treatment of Alzheimer's Disease
In a training manual for assisted living caregivers, Alzheimer's/Dementia Care
for Assisted Living (Assisted Living Federation of America, 1997), Alzheimer's
disease is defined as "a progressive neurological disease or disorder that attacks the
brain and results in impaired memory, thinking, and behavior" (p. 37). The inclusion
of "impaired behavior" indicates the focus of treatment for caregivers, whether they
are professional or family caregivers. Dippel and J. Thomas Hutton, in Caring for the
Alzheimer's Patient (1996) describe current theories in treating those with
Alzheimer's disease and emphasize that education is the most important resource in
treatment. They point out that education
assists in making difficult decisions, in finding support from the community,

in learning how to structure the home environment to reduce stress and
improve patient functioning, in learning how to manage difficult behavior, and
perhaps most significantly, learning the importance of taking care of the
caregiver, (p. 16)
Included in this guide is the "Functional Rating Scale for Symptoms of
Dementia" used to measure changes in capacity for daily living (Dippel & Hutton,
1996, pp. 14-15). This scale gives a picture of the deterioration in functioning of the
person with Alzheimer's disease in such areas as eating (eats neatly using appropriate
utensils, eats messily, has some difficulty with utensils, able to eat solid foods with
hands only, has to be fed), and can be used to help determine the level of care needed
at the time of diagnosis and to anticipate the levels of care that will be needed as the
deterioration progresses. In describing Alzheimer's disease, these authors offer the
following conclusions:
No other chronic medical condition is more devastating to the quality of life.

It strips away the personhood of the individual: those human aspects that are
held most dear—the ability to think, to plan, to remember, and to function as a
productive member of society—are taken away. (Dippel & Hutton, 1996, p.
29)
These comments convey the high value contemporary Western culture places
on the ability to think and to be a productive member of society. This attitude
dominates the literature on caregiving for Alzheimer's disease. In Therapeutic
Caregiving, Barbara J. Bridges (1996) states that the mission of caregiving is "to
promote independence, by maintaining the person with dementia in his/her most
functional state—physically, intellectually, emotionally, and spiritually" (p. 15).
Bridges notes that our society has a difficult time dealing with problems that affect
33
the mind. These resources on current treatment describe the priorities in assessing and
caring for those with Alzheimer's disease.
Evolution of Cultural Attitudes toward Aging and Alzheimer's Disease
In her thorough study of the clinical, scientific, cultural, and political aspects
of Alzheimer's disease, geriatric specialist Dr. Muriel Gillick (1999) explains the
evolution of Alzheimer's disease as well as the evolution of the American attitude
toward aging and dementia. She discusses the confusion that has existed since Alois
Alzheimer discovered, during an autopsy, the pathology of plaques and tangles in the
brain of his demented patient, Frau D. Gillick explains that when Alois Alzheimer
examined the pathology in the brain of Frau D. in 1907, he assumed that this was a
disease which had developed in a middle-aged woman with symptoms similar to
those observed in the senile behavior of the elderly. Thus Frau D.'s affliction was
defined as a disease, presenile dementia, and named after Dr. Alzheimer. The
deterioration of senility was considered a different process, a result of old age.
Gillick (1999) addresses this confusion by tracing the history of Western
culture's understanding of senility. She notes that in Plato's view, the poor judgment
of old age was considered to be the result of weakness of the soul, rather than of brain
dysfunction, and in Shakespeare's time, senility was considered to be a stage in the
normal, human aging process characterized by physical and mental decline-"sans
everything" (p. 76). She describes advances in 19th-century science that led to the
recognition of disease as a unique entity with characteristic symptoms resulting from

34
observable changes in the body's tissues, and explains that Philippe Pinel (1745-
1826), working at the Salpetriere and Bicetre in Paris, first used the term dementia to
describe the "incoherence of mental faculties" (p. 77).
The next step in understanding dementia, according to Gillick (1999), came
when Rudolf Virchow (1821-1902) saw dementia as a disease resulting from physical
changes in the body: Virchow observed narrowing in blood vessels and believed that
"atherosclerosis was the cause of old age in general, and atherosclerosis of cerebral
vessels was the cause of mental deterioration in particular" (p. 78). Virchow's belief
that hardening of the arteries is the cause of senile dementia became entrenched in the
minds of the scientific community and of the general public and, for a number of
reasons, prevented consideration of the similarities between senile dementia and
Alzheimer's disease.
Gillick (1999) maintains that the prevailing negative attitude toward old age at
the end of the 19 -century was one of the reasons for the entrenched belief that senile
dementia was a part of the normal aging process and not a disease. She offers a quote
from American geriatrician I. Nascher to demonstrate the negative cultural view of
old age: "We realize that for all practical purposes the lives of the aged are useless,
that they are often a burden to themselves, their family, and to the community at
large. Their appearance is unaesthetic, their actions objectionable." His view of the
demented is, not surprisingly, even more negative: "The appearance of the senile
individuals is repellent both to the esthetic sense and to the sense of independence,
35
that sense or mental attitude that the human race holds toward the self-reliant and
self-dependent" (p. 85).
Gillick (1999) points out that aging was not seen in such a negative light in
the colonial period (1620-1775), when surviving to old age was a respected
accomplishment. This period, she explains, was dominated by the Calvinist world
view and influenced by a Biblical valuing of old age as a time of wisdom, and death
as a passage from secular life to eternal life (p. 86). Gillick associates the shift from
respect to denigration of the elderly with the development of industrialization, which
resulted in abandonment of family farms for urban, industrial jobs, and in an
emphasis on being a productive member of society. She points to a relationship

th th
between the negative cultural attitude toward old age in the 19 - and 20 -centuries
and the belief that Alzheimer's disease was different from senile dementia (a
condition related to the natural aging process).

th
Gillick (1999) explains changes during the 20 -century that brought to light
the fact that senile dementia is caused by the same pathological changes in the brain
as Alzheimer's disease. She speculates that the recognition of this similarity was not
only the result of hard science, but also the result of changes in cultural attitudes
toward aging (p. 91). David Shenk (2001) concurs with Gillick and provides valuable
pieces of the story of Alzheimer's disease. He relates the story of Washington D.C.
neuropathologist Meta Neumann who, in 1953, published the results of autopsies she
performed on over 200 brains diagnosed with senile dementia. Neumann's results
36
described her discovery that these senile brains had plaques and tangles—the same
clinical picture as Alzheimer's disease brains (p. 74). Shenk explains that the
psychiatric community did not believe Neumann's conclusions, thus "Alzheimer's
disease remained a designation for a very rare pre-senile disease. Senility remained a
natural part of aging" (p. 84).
Shenk (2001) relates that at the same time that Meta Neumann was
encountering entrenched beliefs about Alzheimer's disease, changes were occurring
that would cause the scientific community to open to Neumann's discovery. In the
1950s, public officials began to notice an increase in the percentage of elderly in the
U.S. population, and to notice that the elderly were becoming a powerful interest
group. In 1958 the AARP was established as a lobby organization, and in 1965
Medicare was established in response to the needs of the growing percentage of
elderly in the U.S. population. Shenk describes the discovery by neuropathologists
Robert Terry and Robert Katzman in the late 1960s that senile dementia was actually
Alzheimer's disease, and quotes Katzman's conclusion: "It became obvious to me
that Alzheimer's disease was a single entity regardless of age of onset" (p. 133).
Shenk explains that the increasing number of elderly in the 1970s produced a cultural
attitude that was more open to seeing senile dementia as a disease to be studied and,
hopefully, cured. Shenk comments:
So many people were living so long that senility didn't feel so normal or
acceptable any more. A critical mass of doctors began to prefer to see senility
as a disease. The medical establishment was now ready to take on the moral
challenge of Alzheimer's, to make a commitment to intervention, (p. 133)
37
Shenk (2001) describes political responses to the national concern with
Alzheimer's disease, such as the establishment of the National Institute on Aging in
1975, which began funding proposals for research into Alzheimer's disease, and
explains that the public began to learn about this disease from doctors and the media
in the 1980s. He cites two events occurring in 1980 as turning points in the public
awareness of Alzheimer's disease: the public revelation that Rita Hayworth had been
diagnosed with Alzheimer's disease, and the publication of a letter about a demented
relative in the column of Abigail VanBuren (pp. 135-136).
Muriel Gillick (1999) offers more details about this story of the letter to "Dear
Abby." Gillick explains that the letter was asking about resources for coping with a
demented relative. "Dear Abby" responded to this letter by offering the name and
address of the newly established (Dec, 1979) ADRDA (Alzheimer's Disease and
Related Disorders Association). Over the next few weeks the ADRDA received over
25,000 requests for information. The ADRDA assembled pamphlets and letters that
ultimately became The 36 Hour Day authored by Nancy Mace and Peter Rabins of
Johns Hopkins University. This book is in its second edition, has sold over one half
million copies, and continues to sell 2,000-3,000 copies a month (pp. 120-123).
Gillick summarizes the transition of Alzheimer's disease from the status of obscure
and poorly understood to the status of center stage in the U.S. medical and political
arenas, explaining that formal criteria for diagnosing Alzheimer's disease were drawn
up and published in 1984 and that this document marked the end of an era in the
38
history of Alzheimer's disease. From this point in time, pre-senile and senile
dementia were understood to be caused by the same pathology—and given the name
Alzheimer's disease (pp. 122-123).
In a discussion of the significance of public awareness and attitude toward
Alzheimer's disease, Gillick (1999) addresses the relationship between cultural
attitudes and definition and treatment of illness in the following comment on her
patient:
Our emotional reactions to her, the fears and anxieties she engendered,
derived to a considerable extent from the way our society sees dementia. . . . If
science cannot provide an explanation, the popular imagination will. These
commonsense theories reflect deep-seated beliefs about what makes people
get sick; they often reveal as much about prevailing conceptions of good and
evil, of upright and dissipated living as they do about pathophysiology, (pp.
169-170)
She follows this discussion with a question most pertinent to this study:
Understanding the significance attached to a disease may tell us a great deal

about the society that develops the metaphors. At the same time, the
metaphors shape the reality experienced by the sufferers from the illness: it
matters tremendously to an individual with TB, cancer, or Alzheimer's
disease, not just what his physical symptoms are, but also how he is
perceived—and therefore treated by his society, (p. 171)
The impact of this negative cultural attitude toward those with Alzheimer's disease
will be described in the following section of autobiographies written by people in the
first-stage of this disease. The unique issues faced by those who have early-onset
Alzheimer's disease are addressed by several authors in this section. These issues
include being forced to retire early and become dependent in their 50s in a culture
that stresses independence and productivity.

39
Gillick (1999) emphasizes the negative cultural attitude toward Alzheimer's
disease in her observation that "it is principally through your job, paid employment,
that you can expect to 'make something' of yourself. This leaves homemakers and
retired people in the lower echelons of society; it leaves demented people in the sub-
basement" (p. 187). She offers the following observation of the media's attitude
toward those with Alzheimer's disease and toward their caregivers:
Only rarely are the media descriptions of a demented older individual and his
family balanced: written both from the perspective of the old person and the
caregiver, portraying both positive and negative features of reality. . . . Absent
from descriptions in the popular press is the caregiver who finds her role
fulfilling, who has had a long-standing close relationship with her mother and
delights in helping her at the end of her life. . . . The popular conception of
Alzheimer's disease does not include the old person who is cheerfully
oblivious to his dementia. If any attention at all is paid to the perspective of
the demented person himself, it is to his deficits rather than his residual
strengths, (pp. 181-182)
Gillick (1999) sees the current focus on the negative features of Alzheimer's
disease to be, in part, influenced by the pendulum swinging back to the view that
living right leads to a healthy old age:
The growth and fulfillment model of aging represents the positive pole of
what historian Thomas Cole calls the dualism of aging. The critics of ageism,
debunking the myth that all old people are unproductive, sick, and senile, have
created a new stereotype of the old person who is "healthy, sexually active,
engaged, productive, and self-reliant, (p. 185)
Gillick notes that this stereotype of aging marginalizes or omits the frail, infirm, and
demented. She asserts that the true challenge is "to find meaning in old age despite
physical and cognitive decline" (p. 185).

40
Gillick (1999) cites America's passion for self-sufficiency and rational control
as one reason for the pervasive disgust and disdain for the loss of control experienced
with dementia. She contrasts contemporary culture, where meaning for the individual
is found in the market place, to communal cultures such as traditional societies in
India where the elderly are valued for their experience (p. 188). Gillick speaks
passionately for the need to understand the texture of Alzheimer's disease:
I continue to believe that to achieve a deep understanding of Alzheimer's

disease, we must feel the texture of the illness. To go further, to grasp the
meaning of dementia in contemporary society, which in turn affects the nature
of the experience for those with the disease, we have to examine the political,
scientific, and historic underpinnings of the disease. . . . Not only does the
study of the historical and political background clarify how we see
Alzheimer's Disease and why; it also serves to illuminate the way American
science works and how institutional forces conspire with intellectual trends to
produce change (p. 220).
In resonance with Gillick, medical anthropologist Lawrence Cohen also
compares contemporary American culture's attitude toward the elderly with the
cultural attitude of traditional societies in India. Cohen looks at the social
construction of Alzheimer's disease in No Aging in India (1998). He explains that his
focus is on the loss and
the decay of the body, its reason, and its voice, its ability to be heard as a
speaking subject. The focus, in other words is on senility, and by that I mean a
process rooted in the material changes of physiology and political economy
and in a diverse set of social practices that determine how generational and
other sorts of difference come to matter, (p. xv)
Cohen (1998) speaks of the tragedy of Shakespeare's King Lear and asks, "is
it his old age or his daughters' actions that precipitate Lear's madness?" (p. 5). Cohen
explores the theory that in traditional societies, old people are well cared for and do
41
not become senile. He describes his experience of an international conference on
Alzheimer's disease: "Two distinct and seamless narratives emerged: for many of the
Americans and Europeans, senile pathology was located in specific and isolatable
disease processes; for many Indians, senile pathology was located in family dynamics
and cultural crisis" (p. 17). Cohen proposes that
the iterative quality of Alzheimer's discourse further allows its victims to be

constituted as a non-person, and I will argue that it is not the biological
process of dementia as much as the social processes of its construction that
deprives the demented elder of selfhood, (p. 7)
Sarah Croakley speaks to this theme of the social construction of disease as
editor of Religion and the Body (1997), a collection of essays that explore the role of
body in several religions. The essays included in this text address a range of issues
including the mind-body relationship and the impact of cultural attitudes on illness
and the treatment of illness. Croakley addresses Cohen's question of what caused
Lear's madness, and agrees with Gillick's contention that science, politics, and
cultural attitude play a role in the experience and treatment of disease. Croakley
asserts that there is a close relationship between medical theories of illness and
political theories of government: "the human body has been frequently associated
with political and social disorder. In this respect medical theories are simultaneously
political theories" (p. 18). In one of the essays in Croakley's book, "The Body in
Western Catholic Christianity," Andrew Louth offers the following insight into the
relationship between disease, the body, and political and social disorder: "the decay
and fragmentation manifest in the body of the leper recalled the decay and
42
fragmentation of society to which the centralization of power in twelfth-century
Europe was a response" (p. 128).
In "Remarks on the Anthropology of the Body," another of the essays
included in Croakley's book, Talal Asad addresses the mind-body relationship in a
discussion of the body as cultural metaphor:
The human body is not to be viewed simply as the passive recipient of

"cultural imprints," still less as the active source of "natural expressions" that
are "clothed in local history and culture," but as the self-developable means
for achieving a range of human objects—from styles of physical movement
(for example, walking), through modes of emotional being (for example,
composure), to kinds of spiritual experience (for example, mystical states).
(1997, pp. 47-48)
To amplify his point, Asad gives the example of the way a professional pianist's
"practiced hands remember and play the music being performed" (p. 47), and cites an
essay by Scheper-Hughes and Lock, "The Mindful Body," which discusses
mind/body dualism in terms of the individual body (lived experiences of the body-
self), the social body (representational uses of the body), and the body politic (the
social control of bodies, individual and collective) (p. 45). This view of the human
body as self-developable calls into question the attitude that loss of cognitive capacity
means loss of self.
Oliver Sacks (1990) contributes to the discussion of the role of the body in
self expression with a story about a neurologically impaired patient named Rebecca
who had difficulty walking, but could dance without difficulty (p. 178). Sacks
explains that uncouth movements disappear with music and dancing: "the sequence of
43
movements they cannot hold as schemes being perfectly holdable as music, i.e.
embedded in music" (p. 185). Sacks comments:
The capacity to perform, to play, to be, seems to be a given in human life, in a

way which has nothing to do with intellectual differences. One sees this with
infants, one sees it with the senile, and one sees it, most poignantly, with the
Rebeccas of this world, (p. 186)
People who have Alzheimer's disease and can barely walk are often able to dance
gracefully.
David Shenk (2001) offers further evidence of the role the body plays in self-
expression. He describes changes in artist Willem DeKooning's style as he
progressed through the stages of Alzheimer's disease. Shenk explains that
DeKooning's hands retained the capacity to manipulate brushes and work with color
but his style became less dense, textured, and animated—more relaxed with a
lightness and joy—like a blank mind picturing itself (p. 198). This description calls
into question Kaplan and Sadock's (2003) comment that the "self is a product of brain
functioning" (p. 341), and brings to mind the Buddhist meditation goal of emptying
the mind and Jung's description of the unconscious as apleroma—an emptiness
pregnant with potentiality.
Shenk (2001) expands on this theme of the potential capacities in those
suffering cognitive decline. He tells of his interactions with Morris Friedell, a former
sociology professor diagnosed with Alzheimer's disease. Shenk met Friedell at a
conference on Alzheimer's disease and was struck by the fact that Friedell's display
about his experience with the disease was ignored in favor of displays about the
44
science of Alzheimer's disease: "amidst all the data and ideas the disease was
nowhere to be found" (p. 247). Shenk relates that Morris discussed an upside to his
experience of Alzheimer's disease, explaining that "the short-circuiting of memory
forces every Alzheimer's to be always in the NOW . . . leading to a heightening of
consciousness" (pp. 193-194). Shenk's description of capacities that are present in
those with Alzheimer's disease speaks to Gillick's call for a more balanced
understanding of Alzheimer's disease—one which doesn't dramatize the negative
aspects and omit the positive aspects.
Two other publications that respond to the call for a balanced understanding
of Alzheimer's disease are geriatric psychologist Tom Kitwood's (1997) Dementia
Reconsidered and Communication in the Care of People with Dementia, by John
Killick and Kate Allan (2001). Kitwood speculates that some of the negative
behaviors of those with Alzheimer's disease may be a reaction to the way others
relate to them and wonders if treatment that includes engagement, touch, and
acceptance would elicit more positive behaviors. Kitwood proposes a person-first
approach to caring for those with Alzheimer's disease, based on the belief that they
do not lose theirpersonhood, and he also proposes that people with Alzheimer's
disease have something positive to teach our culture—they take us to a place where
feeling takes precedence over cognition. Poet John Killick and clinical psychologist
Kate Allan focus on methods of communicating with those with Alzheimer's disease
and draw from a technique called Coma Work, developed by Jungian analyst Arnold
45
Mindell. Mindell's Coma Work will be discussed further in the psychology section of
this review.
Survey of Descriptions of the Alzheimer's Experience Written by Those Diagnosed in
First-Stage Alzheimer's Disease
The question that reverberates in my mind as I read stories written by those
diagnosed with Alzheimer's disease is whether our cultural attitude toward cognitive
decline, dependence, and death exacerbates their suffering. The qualities that stand
out when I read these stories are courage, fear, despair, loneliness, helplessness, and
loss—of control and meaning. These stories underscore the importance of the central
question of this study, how can caregivers discern and meet the psychological and
spiritual needs of those with Alzheimer's disease? For example, how might a
caregiver discern and meet the spiritual needs of Reverend Robert Davis, former
pastor of a large church in Miami, who was diagnosed with Alzheimer's disease in
1987 at 53. Reverend Davis (1989) relates his neurologist's way of giving him his
diagnosis, "I wish I could tell you that you have cancer" (p. 20). Davis offers the
following description of his inability to remember prayers to alleviate his terror in the
night:
Perhaps the first spiritual change I noticed was fear. I have never really known
fear before. At night when it is total blackness, these absurd fears come. The
comforting memories can't be reached. The mind-sustaining Bible verses are
gone. The old emotions are gone as new, uncontrolled, fearful emotions sweep
in to replace them. The sweetness of prayer and the gentle comfort of the Holy
Spirit are gone. I am alone in the blackness. Suddenly, ridiculous, absurd fears
creep into my mind. I know they are ridiculous and unreal, but they still come.
46
(p. 107)
Is the fear described by Reverend Davis exacerbated by the negative cultural attitude
toward cognitive decline and dying?
In another account of living with a diagnosis of Alzheimer's disease, Larry
Rose (1996), a retired electrical engineer who was diagnosed with this disease in
1992 when he was 54, addresses the negative cultural attitude toward Alzheimer's
disease in the following observation:
People need to be better educated about Alzheimer's. Most people really want
to know; there are just no teachers. If only there was a way to tell them,
without being arrogant, "Don't patronize me; I am not an idiot, although I
know I do some stupid things." I once had an I.Q. of 146.1 know a high I.Q.
doesn't mean anything now—I'm not sure it ever did. It doesn't make my
coffee taste any better, and it doesn't make it any easier to cope with this
disease. I am becoming more withdrawn. It is so much easier to stay in the
safety of my home where Stella treats me with love and respect, than to
expose myself to people who don't understand, people who raise their
eyebrows when I have trouble making change at the cash register, or when
I'm unable to think of the right word when asked a question, (p. 32)
Rose's book, Show Me the Way To Go Home, takes readers into the inner landscape
of Alzheimer's disease, describing feelings and thoughts that are stirred by such
experiences as being unable to find the way home.
Lisa Snyder, a clinical social worker at the Alzheimer's Disease Research
Center at U.C. San Diego, speaks to Rose's request that someone educate people
about Alzheimer's disease. In Speaking Our Minds: Personal Reflections From
Individuals With Alzheimer's (1999), she shares interviews she conducted with seven
people in the early stage of Alzheimer's disease, and explains that her goal is to
present the subjective experience of Alzheimer's disease, to discuss the isolation that
can be part of the Alzheimer's experience, and to encourage those in relationships
with someone who has Alzheimer's disease to learn to listen to both verbal and
nonverbal communication, and to understand that people with Alzheimer's disease
are "defining themselves and a disease in new ways, not only by what has been lost
but also by what is enduring" (p. 10). Her comment underscores a point discussed in
the introduction of this study, and also discussed by Muriel Gillick: the importance of
seeing what is there as well as what is not there when assessing and treating those
with Alzheimer's disease.
One of the people Snyder interviewed was a man named Booker. After the
death of his wife in 1993, Booker moved from his home in New Jersey to live with
his daughter and her husband in San Diego. Booker's daughter began to notice
irrational behavior and a decline in Booker's abilities and, after an evaluation, was
told that Booker, 82 years old, had Alzheimer's disease. Booker was given a
prescription for an antidepressant, which helped relieve his anxiety and irritability and
restored a calm routine to his home-life. Snyder describes Booker as a man with an
elegant stance, an unhurried, formal, but welcoming propriety, and a demeanor of
self-respect. As Booker told his stories to Snyder, she realized that a trip to Jerusalem
to be baptized in the Jordan River with his daughter was a pivotal experience—a
central source of meaning in Booker's life.
Snyder tells a story to explain her impression that the losses of Alzheimer's
disease were mitigated by Booker's faith in his daughter's love, and in the divine
forces at work in his life (1999, p. 101). She relates Booker's response when she
asked him if he had ever known anyone with Alzheimer's disease. Booker responded
with a story about an elderly woman in his small, rural hometown who was confused
and often in need of help. Booker explained that this elderly woman was stranded on
a small island surrounded by a watery ditch, and he and his young friends helped her
get off the island and onto solid, dry ground. Snyder interprets Booker's story in
response to her question as a clue to why he did not express fear and despair when he
discussed his disease. Snyder explains that "he trusts that just as he and his friends
were there for Aunt Kitty, someone will be there for him to lift him across those
rising waters to the security of safer ground" (p. 110).
In contrast to Booker's calm demeanor and capacity to hold his faith as a
source of emotional and spiritual support, author Cary Henderson expresses fear and
loss in Partial View (1998), his account of what it is like to have Alzheimer's disease.
Henderson, a history professor who was 55 when diagnosed with Alzheimer's disease
in 1985, conveys a sense of loss, fear, frustration, humiliation, and despair in an
account of his experience:
It's just that when you lose the most valuable things in your life . . . your
career not to mention making money, and other fool things like that. .. and
just the feeling that you are inferior somehow .. . that you're no good
anymore. I feel that way and I don't want to feel that way .. . don't want
anybody else to feel that way, but I do. (p. 82)
Henderson expresses fears for his future, "My wife is out now trying to take care of
her mother who is in a nursing home, and God, I hope I never get in one of those. . . .
My biggest fear is going into a nursing home" (p. 72). Among the negative
experiences and feelings, Henderson offers the following observation that he is able
to find some pleasure is his life:
When I was first diagnosed, she and I were just absolutely sure that everything
was over, that life was just simply going to pot. It's difficult, I think, for
somebody with Alzheimer's to not just give up and say, the hell with it. I
periodically do that, but then again, there are some things that I really enjoy. I
still pick up leaves, probably the same ones I had before. I love the fall colors.
I pick 'em up anyhow, whether I have them or not. Every year it seems like
they're prettier and prettier. I appreciate them a lot more now than I did a few
years ago. (p. 77)
In yet another poignant account of the losses experienced as Alzheimer's
disease progresses, Thomas DeBaggio (2002), who was 57 when diagnosed with
Alzheimer's disease in 1999, describes the pain he felt in response to his neurologist's
manner of explaining the results of his neurological tests:
"You have Alzheimer's," he said matter-of-factly. The statement exploded in

my head and I was swept with emotion and struggled to hold it beyond
recognition. . . . It was at this moment Joyce entered the conversation. She
was shocked at the manner with which the neurologist announced what
amounted to a death sentence. She wanted details, understanding, some base
from which to gain strength. . . . The neurologist could not hide his anger at
being questioned. Joyce wanted answers and the neurologist wanted to get
along with writing of prescriptions and send me on my way. (p. 37)
DeBaggio offers the following reflection on the difficulty of delivering a diagnosis of
Alzheimer's disease:
It is inevitable that some patient's fear and anger and bewilderment will
explode and have to be absorbed by the doctor, but it need not end up
frustrating his ability to relieve further suffering or hamper his ability to
soothe sick bodies. The best doctors I have known have a soft touch and
storytelling skills that help them gain the confidence of patients. With a
disease like Alzheimer's, tender, life-affirming skills are essential, (p. 39)
DeBaggio's (2002) description speaks eloquently about the impact that
cultural attitude has on the experience of Alzheimer's disease. In the following

50
collage of vivid images, DeBaggio gives his reader a view into his inner life
experience of Alzheimer's disease:
I sit at my worktable, a still world around me, and stare at the wall, empty of
decoration. I become lost in the vocabulary of silence. Thoughts squiggle and
writhe into sentences that disappear before they can be acknowledged (p. 41).
There is always something lurking around the corner. For me it is a life
without a life. A world of silence and confusion. The scent of nursing homes
and tears. A stumbling life of humiliation and incoherence. . . .
Communication without words where eyes and determination speak in place
of spoken words (p. 166). The discipline of the mind crumbles into slogans
and short bursts of anger. I should run for president (p. 107).
I bleed emotion every hour and play with a tricky shifting alphabet of
stumbling words. I have just spent 5 minutes struggling to spell the word
'hour.' There was crying coming from my office and I opened the door. I saw
myself sitting upright in the chair, staring at the blank computer. I was crying
in the dark. Will somebody please help me? (p. 105)
My brain skitters from place to place unable to alight on a single site
that will provide me with succor or balance, (p. 96)
Mom, I know what death looks like. I watched you cling to life in
Eldora on that teary hospital bed, a chip of ice in your mouth, dying slowly as
you gave birth to a cancerous tumor. I know now how alone and vulnerable
you must have felt, even in my presence, while you waited to die. Now it is
my turn to begin the wait and listen in frightened silence as my brain murders
my sense and destroys my body. (p. 127)
Are we born with a fear of our bodies? Could that be why we pay so
little attention to what is inside and so many hours are spent pampering the
exterior and festooning it with colorful threads? We breathe without
awareness. Not until something goes cockeyed wrong inside us do we become
aware there is an inside to look after, an interior for the mind, as well as the
arteries. There is so much to know, so little time, and we pay so little attention
to an elbow. Maybe it is good we are so body ignorant. If we spent time trying
to understand what goes on inside, we'd get nothing done. Might not be a bad
idea, doing less and shaping our ideas on nothingness, (pp. 178-179)
Once my days were bright with ideas and dreams, a butterfly of words
dancing in the sun of certainty. Now a dull emptiness wraps its arm around me
in a suffocating embrace. The words in my brain are silent, and the flood of
sentences begins only when my pen unleashes a flood of writing memory.
After so many years coddling words, it is now I realize writing carries the
blood of memory, (p. 199)
In the past, I was a man who did not move in his sleep. Lately I toss
and turn on a disheveled bed. Night after night strange dreams inhabit my
sleep, nights of lost wandering, terror, fear and mysterious occurrences. These
51
are dreams of confusion, deep, dreadful dreams I categorize as Alzheimer's

experiences. In them the man I see is walking, wandering aimlessly, lost and
fearful. I wake up screaming, fearing loss of control, hiccupping with fear,
breathless with emotion. I feel myself dying night by night, as I mark off
strange wads of wandering scattered in resistant sleep. My mind jumps as if a
computer screen scrolled out of control. I am lost and afraid, headed for a hell
imagined by a dyspeptic surrealist, (p. 193)
I have grown to enjoy the surprises of everyday life and the self-
discovery it brings.... I watch the robin high up in the unused greenhouse,
patiently warming her five blue eggs in the fuzz of her feathers. I wait as
anxiously as she to see new life. (p. 201)
Instead of becoming emotional about me and this brain disease, if my
friends thought about it, Alzheimer's could be a liberating event, freeing me to
float through life and stand it on its head. Come fly with me. (p. 48)
I am on the cusp of a new world, a place I will be unable to describe. It is the
last hidden place and marked with a headstone. I must now wait for the
silence to engulf me and take me to the place where there is no memory left
and there remains no reflexive will to live. It is lonely here waiting for
memory to stop and I am afraid and tired. Hug me, Joyce, and then let me
sleep, (p. 207)
This compelling portrait of the inner landscape of Alzheimer's disease offers little to
feel hopeful about in the experience of this disease, except the thread that appears in
several accounts of Alzheimer's disease, the thread of living in the now and feeling
free to enjoy nature and the surprises of each day.
DeBaggio's comment that his pen unleashes a flood of memory recalls the
description of the painter DeKooning's hands retaining the capacity to manipulate
brushes and color. The body in these examples seems to retain the capacity for self-
expression through practiced hands. DeBaggio provides profound insights into the
depth and complexity of the subjective experience of Alzheimer's disease. He
describes the inner experience of forgetting, depicting it as an imaginal hell, and he

52
reflects on the symbolic meaning of Alzheimer's disease as a liberating event leading
to a new world—death.
As a counterpoint to the fear and loss expressed by DeBaggio, Morris Friedell
contributes an adaptive response to the portrait of the experience of Alzheimer's
disease. Friedell (2004b), ironically, began to suspect he had memory problems
during the course of his involvement with his mother's assessment and diagnosis of
dementia. In 1998, at 58 years old, he saw that his own MRI films indicated he had a
terminal, dementing disease. His initial response to his diagnosis was to join the
Hemlock Society and write an emotional letter to his children (homepage). After his
initial shock, Friedell began to research rehabilitation for those with Alzheimer's. He
comments that he first assumed that there weren't any books on rehabilitation for
Alzheimer's because neurologists and psychologists don't mention them. Friedell,
however, found information and makes the following assertion:
Rehabilitation can powerfully improve a patient's quality of life, allowing him

or her to regain much lost ground and then maintain for years. What is needed
is not an expensive institute, but some concepts which are not too
complicated, the support of a good friend or psychotherapist, and lots of hope
and hard work. (2004a)
Friedell (2004b) encourages those interested in rehabilitation to read his
article, "Dementia Survival—A New Vision," published in Alzheimer's Care
Quarterly (April/June, 2003), and describes an organization he and several other
conscious patients formed called DASNI (Dementia Advocacy and Support Network
International) whose members write books and give presentations at plenary sessions
53
of Alzheimer's Disease International conferences. Friedell explains that the motto of
DASNI is symbolized by its logo—a winged turtle with a forget-me-not in its beak,
standing for the human dignity of not only Alzheimer's disease patients but of "all
who are old, poor, weak, disabled or incurable." (2004a)
Friedell (2004b) believes that one of the reasons that Alzheimer's disease
patients go downhill is that society sends them a devastating message that their life is
already over. He asserts that what keeps him going is the goal of leaving a hopeful
message for his children and grandchildren. Friedell has pursued this goal by
developing what he calls Holistic interventions for the personality-Habilitation of
Brain Dysfunctional Persons. He addresses the blunting of affect which accompanies
Alzheimer's disease and explains that in the early stage of Alzheimer's disease, he
retained an acute sensitivity to music but could not feel it nourish his soul as it had
done in the past.
After an experiment in meditation, Friedell (2004b) found he was able to
respond to music in a way he hadn't for 4 years:
I was no longer experiencing a diminished self! I was once again experiencing

a self that was nurtured and could be nurtured by music. . . . I had experienced
a rebirth of selfhood . . . a new integrity and integration. An analogy would be
to a person who has felt that a physical injury which deprived him of normal
sexual expression had pathetically diminished him as a sexual being. But then
he awakens to the realization that he has lost a cherished channel for his
sexuality, but not its essence. (I. Introduction)
He explains that his meditation experiment allowed him to experience dawn
consciousness, which he compares to an oceanic state (a highly diffuse state of

54
awareness) and to the Zen beginner's mind. He maintains that his experience of dawn
consciousness was followed by a Genesis experience, "an awakening of personal
wholeness. The archetype is the Biblical narrative: 'the earth . . . unformed and void,
with darkness over the surface of the deep and a wind sweeping over the water—God
said, 'Let there be light';" (V. My Personal Experience).
Friedell (2004b) describes exercises for those who, because of cognitive
impairment, have lost a sense of their self—a loss of what they love, what they want
to do. He suggests that Alzheimer's disease patients be exposed to stimuli that stir
memories of when they were most alive:
For example, music that invites "remembrance of things past," of romantic

times when you were full of dreams . . . the meditation and the music are like
the rain and sunlight which fall upon the soil covering the seed of personality.
And hopefully one day a little sprout will appear. A little impulse or intention
which points what to do or how to live, and when you look at it there will be a
feeling of "yes." And you can continue to cultivate the garden of your
personality (VI. Personality-Habilitation of Severely Impaired Persons).
Friedell (2004b) drew inspiration for his theory from the work of Oliver Sacks
who noted that musical intelligence may not only be preserved in dementia but even
heightened. Friedell offers a quotation from Sacks that is pertinent to his own theory
and is also pertinent to the theories of this study:
In dementias, one may find all sorts of specific losses . . . and, as the disease
worsens, a reduction of personal identity. And yet this reduction is virtually
never complete; it is as if identity has such robust, widespread neural basis; as
if personal style is so deeply ingrained in the nervous system that is never
wholly lost; at least while there is still any mental life present at all. (This,
indeed, is what one might expect if the personal quality of experience and
feeling and thought has molded the structures of the brain from the start.) And
it is this that makes a continuing possibility of being affected by music, even
in the most deeply damaged patients, long inaccessible to language and most
55
other modes of communication. For it is the inner life of music that can still
make contact with their inner lives, with them; that can awaken the hidden,
seemingly extinguished soul; and evoke a wholly personal response of
memory, associations, feelings, images, a return of thought and sensibility, an
answering identity. (I. Introduction)
Friedell (2004b) discusses the importance of caregivers who can reinforce
hints of spontaneous emergence of what Sacks calls an "answering identity," and
what Friedell calls a "little shoot in the garden of your personality." He emphasizes
the impact of unconscious messages that caregivers send and gives the example of a
parent who plays differently with a normal child than she does with a disabled child.
Friedell points out that a parent's expectation that the normal child will develop into a
fully-functioning adult and that the disabled child must adapt to life as a disabled
adult has an impact on each child's sense of hope. He notes that unconscious despair
is often induced in caregivers who witness dementia and try to maintain hope, without
irrational beliefs or destructive expectations. (VI. Personality-Habilitation of Severely
Impaired Persons).
Friedell (2004b) cites Cohen and Eisdorfer's book about Alzheimer's disease,
The Loss of Self, as promoting caregiving that has a negative impact on the growth of
the people cared for. Friedell quotes Cohen and Eisdorfer as saying, "it is hard to be
close to the patient for long periods without feeling upset or uncomfortable." Friedell
comments on this negative attitude toward those with Alzheimer's disease and
suggests that this statement would not be made in discussing care for paraplegics:
Suppose we were dealing with paraplegics rather than brain-dysfunctional

persons, and the standard professional admonition to families was:
"Regardless of your personality, professional training, or background it is hard
to be close to a person in a wheelchair for long periods without feeling upset
or uncomfortable." (VI. Personality-Habilitation of Severely Impaired
Persons)
The accounts in this section, selected randomly, provide valuable insights into
the subjective experience of those in the first-stage of Alzheimer's disease. The
majority of these authors were diagnosed in their 50s with what is called early-onset
Alzheimer's disease. Their accounts describe the unique challenges of developing this
disease long before the rest of the body is terminal, and long before cognitive decline
resulting from old age is expected. The impact of early-onset Alzheimer's disease is
felt in such issues as forced early retirement and unexpected dependence on others.
The accounts of these authors certainly speak to the impact of cultural attitude on
those with Alzheimer's disease, and to the need for better ways of meeting the
psychological and spiritual needs of those who are aware that they have Alzheimer's
disease.
Survey of Accounts of the Experience of Caregiving for a Loved One with Alzheimer's
Disease
This section of the Literature Review, texts written by family caregivers,
demonstrates a range of priorities, resources, attitudes, coping skills, feelings, and
modes of caring for a loved one with Alzheimer's disease. Muriel Gillick (1999)
comments that there are many issues involved in caring for those with Alzheimer's
disease: "Some of the issues are concrete .. . where to live, what medication to take,
how to make a diagnosis; others are more philosophical—how to preserve autonomy,
promote dignity, and maximize quality of life" (p. 6).

57
Historically, the first example of caring for a person with Alzheimer's disease
is the care of Frau D. When her behavior became unmanageable, Frau D.'s husband
took her to a psychiatric hospital in Frankfort, where Dr. Alois Alzheimer was the
attending physician. During the next 4 years as a patient in this hospital, Frau D.
deteriorated progressively to the point where she lay curled in a fetal position,
incontinent, and unable to speak or feed herself. David Shenk (2001), in his study of
Alzheimer's disease, relates some of the particulars of the care of Frau D. and the
course of her illness:
Her condition did not improve. It became apparent that there was nothing that
anyone at this or any other hospital could do for Frau D. except to insure her
safety and try to keep her as clean and comfortable as possible for the rest of
her days. Over the next four and a half years, she became increasingly
disoriented, delusional and incoherent. She was often hostile. . . . From time to
time she was completely delirious, dragging her blankets and sheets to and
fro, calling for her husband and daughter, and seeming to have auditory
hallucinations. Often she would scream for hours and hours in a horrible
voice, (pp. 13-14)
Shenk describes the cause of her death: "her file listed the cause as 'septicemia due to
decubitis'—acute blood poisoning resulting from infectious bed sores. In her last
days, she had pneumonia, inflammation of the kidneys, excessive fluid in the brain
and a high fever" (p. 22).
This example of caregiving was typical of the treatment of the mentally ill in
asylums during the early years of the 20 -century in Western cultures. In Madness: A
Brief History, scholar Roy Porter (2002) offers the following historical sketch of care
for the mentally ill:

58
Public asylums grew larger—the average English specimen housed 116

patients in 1827 but nearly 10 times as many in 1910. . . . In the USA there
was a slide from the optimism of moral therapy to a preoccupation with
security and sedation. Quality of care declined. Set up in the first half of the
19th-century, the Pennsylvania Asylum initially promoted high levels of
community and family involvement, underpinned by a curative ideology. By
the last decades of the century, however, a more organic psychiatry had
become dominant, justifying the habitual use of sedatives and marking a
decline in personal therapy. . . . The instituting of the asylum set up a cordon
sanitaire delineating the "normal" from the "mad," which underlined the
Otherhood of the insane and carved out a managerial milieu in which that
alienness could be handled, (pp. 121-122)
For the first half of the 20th-century, the choices for caring for those with
early-onset Alzheimer's disease and senile dementia were in-home care or an insane
asylum. These two choices stir intense feelings when family members face the task of
caring for a demented loved one. As I was moving into my experience of caring for
my mother, I heard phrases like "We're warehousing our elders," and "Care for the
elderly is becoming an industry." The tone in these phrases suggests a detached
perspective. From my perspective, as someone who was engaged in the challenges of
caring for a demented elder for several years, I see truth in these statements and
reason for concern, but I also see positive changes evolving in caregiving for those
with Alzheimer's disease. I visited many facilities in my search for a facility for my
mother, and several of these were heart wrenching. I saw diapered, gaunt bodies
hovering inside locked entrances, screaming and crying, "Let me go home." I saw
frail bodies drooping in school desks crowded together while a staff member read to
them from a "Reader's Digest." I saw a nurse's station just inside a locked door,
where three staff members sat glaring and speaking harshly to the residents. I saw and
59
read about in-home care where there was emotional and physical abuse of the elder,
and situations where the caregiver developed emotional or physical disorders as a
result of the burden of caregiving.
In accounts written by family caregivers, there are those who cared for a
demented elder at home and feel strongly that this is the best method, and there are
those who placed their elders in facilities and feel strongly that this is the best choice
for both elder and caregiver, or feel regret and guilt for having made this choice.
What becomes clear in the stories of family caregivers is that neither extreme choice
is optimal. Most caregivers express a need for resources to help make caring for a
person with Alzheimer's disease physically and emotionally possible.
Many resources have developed during the 1980s and 1990s to support
caregiving for those with Alzheimer's disease, including daycare centers, Hospice for
support in end-stage Alzheimer's disease, and elder-care facilities informed by an
understanding and respect for elders and for dementia. One example of such eldercare
is the Eden Alternative, a program which helps nursing facilities develop an enriching
environment for residents. This program shows promise in changing not just nursing
homes but, hopefully, also the negative cultural attitude toward those with dementia.
The goal of Eden is to bring the living world into the nursing facility in the form of
plants, animals, and children; and to integrate residents of nursing homes with the
community. This integration would be a shift from community members doing a good
60
deed in a nursing home, to having a reciprocal relationship with the residents as
valued members of the community.
As we move toward the years when the baby boomers are elderly, it is
predicted that the number of those diagnosed with Alzheimer's disease could soar
from an estimated 4 million in 1998, to as many as 14 million by 2040 (Castleman,
Gallagher-Thompson, & Naythons, 1999, p. 36). The base of caregivers will be
stretched much thinner in the coming years, creating a problem which calls for
solutions at a cultural level. There will be many elders who have no family to care for
them, and will be dependent on facilities for care. Eden Alternative offers a means for
improving care for the elderly in our culture as a whole.
The changes advocated by Eden Alternative recall the ideas of moral
therapy—the approach to care for the mentally ill discussed previously by Roy Porter.
This therapy emphasized community and family involvement in caregiving, and
attention to managing the environment, based on the belief that those with mental
illness would respond to kindness and a nurturing environment. Although there is a
current trend in the medical field toward seeing mental illness as a physical problem
requiring pharmacology, the cultural philosophy regarding caregiving for the
mentally ill shows a trend toward the ideas of moral therapy. The beginnings of this
trend can be seen in what was called the Reaganomics of the 1980s where care in the
community was a facile justification for saving money by closing mental institutions
and encouraging communities to find ways to care for their mentally ill members. The
61
problem with this new version of community care was that the communities did not
have the funds, the knowledge, or the infrastructure to care for the mentally ill
released into the streets, parks, and homeless shelters. Coinciding with the community
care movement was the realization that senile dementia was, in many cases, late-
onset Alzheimer's disease, and with an awareness of the increased incidence of
Alzheimer's disease in a population with a growing percentage of elderly. There was
a response to these changes in the form of new resources for Alzheimer's disease
such as the National Institute on Aging, founded in 1975, and The Alzheimer's
Disease and Related Disorders Association, founded in 1979.
The accounts in this study written by family caregivers span the years from the late
1980s through the 1990s into the 21st-century, and give a sense of how the changes in cultural
attitude have generated new resources that support caregiving either in a home or institutional
setting. Linda Grant describes the struggle to assess and to find resources to meet her mother's
needs in the late 1980s and early 1990s in England. Grant's honesty in describing her
conflicted feelings about her mother, her frustration with her mother's cognitive decline, and
her sense of loneliness as she searched for ways to meet her mother's needs reveal that even
though contemporary care for the demented is more humane than that provided to Frau D.,
there are still large holes in the social services available for demented elders. Grant explains
that the resources she found functioned in a climate lacking in knowledge and sensitivity to
the needs of demented elders.

62
In Remind Me Who I Am, Again, Grant (1998) writes about prejudice against people
with dementia, as well as the discrepancy between available resources and the needs of most
people with the illness. She observes that this discrepancy is predictable in a society where
dementia is avoided and misunderstood, and notes that there is also little support for families
trying to care for someone with Alzheimer's disease. After anguishing over her decision to
place her mother in residential care, and her desperate effort to gain the cooperation of social
services in finding a suitable residence, Grant writes, "when it came down to it, hardly
anywhere actually accepts people with dementia and the longer you leave it, the less choice
there is" (p. 175). Grant explains this dearth of resources for people who have dementia as a
result of the social and political climate of the times:
One of the social and political themes of the 1980's and 1990's in both Britain
and America was care in the community, the name of the official policy in the
years of Margaret Thatcher's and John Major's conservative administrations
. . . . The community did not care for them as it did not care for my mother.
What was this community? It was neighbors and family and kind strangers . . .
"you can't just put your mother in a home to suit you, you know," was the
tacit message we hear from the authorities, (pp. 175, 183, 184)
Grant's (1998) descriptions of the negative attitude of English social services
toward demented elders conveys a wrenching portrait of a demented mother who
feels like a pariah, and a daughter who feels lonely and desperate about how to
provide for her mother's needs, and guilty for not being able to meet her mother's
needs herself. Grant observes, "Those who have a relative with dementia sometimes
feel they are held prisoner in a secret society with its own rules and customs and
justifications and even language" (p. 297).

63
In one of the many accounts in this study of daughters caring for demented
mothers (77% of the family caregivers randomly selected for this subsection are
daughters caring for mothers), Teresa Strecker (1997) focuses on her struggle to find
meaning in the experience of caring for her mother, and speaks about the solace she
found in scriptural passages. She explains how her family was able to transform pain
to joy and spiritual growth. Strecker asks a question pertinent to this study: "Why are
we afraid of Alzheimer's disease? Is it the disease we fear or the response on the part
of those around us?" (p. 16). This question speaks to the impact of the cultural
attitude toward cognitive decline and dying on both the sufferer and the caregiver.
The sufferer fears loss of control and the disdain and disgust of the culture. The
caregiver experiences an empathic understanding of the fear and shame of a demented
elder, a realistic fear about how to gather inner and outer resources to meet the needs
of the demented loved one, and an inner struggle with the internalized negative
cultural attitude toward cognitive impairment and dying. In most accounts of family
caregivers, the aspect of caregiving for Alzheimer's disease that stands out as the
most distressing is that the caregiver cannot fix the problem and cannot find a way to
accept the dementia of a loved one as a part of the human experience of dying.
Strecker offers pertinent comments on this subject:
Unfortunately, our society has confused intellect or function with spirit. We

have numbed ourselves to recognizing the spiritual essence of a person.
Alzheimer's strips away the characteristics we use to identify one with the
world, leaving the spirit of the person intact. It is that spirit that is able to
respond to love and knows the comforting presence of another. . . . If we hold
onto the image of the person of the past; we have betrayed the one who is
64
suffering now. If we remain locked in grief, we lose the opportunity to see the
spirit of the person revealed to us during these final moments. In letting go,
we uncover the ears of our soul to finally hear a consoling and forgiving
voice, (pp. 142-143)
Strecker's words remind me of a comment made by one of my sons when I was
telling a story of my mother's periodic ability to respond with warmth or coherence.
He said, "So, when her mind fails, her spirit takes over."
The wisdom of Strecker's words emphasizes the importance of attitude in
caregiving. A negative attitude is likely to elicit a negative reaction from the
Alzheimer's patient. In Frances Hodgson's (1998) engaging story of caring for her
mother, there are many humorous anecdotes and a general attitude of thorough,
competent, loving caregiving, but also many comments that convey a belief that loss
of cognitive function means loss of the person. Hodgson comments, "Although Mom
is breathing, she isn't really alive. The funny, bright, articulate, kind, eager woman I
knew is gone" (p. 44). In describing her mother in late-stage Alzheimer's disease,
Hodgson offers a "picture of Mom today, lying in a recliner and staring vacantly into
space. She is a broken woman. I can't alter the ravages of time and disease, but I can
make sure she gets good care" (pp. 180-181). Hodgson tells about attending a care
conference for her mother when she was in late-stage Alzheimer's disease. Hodgson
was told by a new caregiver, "I had a nice conversation with your mother this
morning." Hodgson reports that she replied sternly, "Please don't say that." After the
meeting she decided to see if it could be possible to have a conversation with her
65
mother. She sat next to her mother's bedside and took her mother's hand. Her mother
responded, "Your hand is cold" (p. 37).
Linda Coombs, in A Long Goodbye and Beyond (1998), tells a similar story
about her experience with a mother dying of Alzheimer's disease. In 1991 Linda and
her father regretfully placed her mother in a nursing home, and Linda gives the
following description of her mother's behavior in the nursing home: "During the first
couple of years Mother was in the nursing home, she was quite frenetic and agitated.
She was totally inattentive, did not respond to hugs and kisses, engaged in loud
yelling almost constantly" (p. 105). Linda described her mother during this time as
"not the mother I once knew" (p. 129), and commented that she felt a great separation
between her and her mother.
In 1993 Linda and her father gave permission for her mother to begin taking
Tacrin, an experimental drug which offered hope for reversing the losses of
Alzheimer's disease. Linda's mother showed a marked improvement—she became
more alert, began smiling, and was capable of communicating. She turned to Linda
during this reversal and asked, "Was your hair brown?" Linda had recently changed
her hair color. Linda reports that her mother's ability to communicate again had a
positive effect on the relationship between mother and daughter: "She went from
being combative and loud to sweet and loving again" (p. 113). This partial reversal
lasted for about a year, and then Linda's mother slipped into a steady decline. Linda
speaks highly of the support provided by Hospice in the final stage of Alzheimer's
disease and expresses a wish that the wonderful services provided by Hospice could
be available throughout the course of Alzheimer's disease.
I think the recovery of lost functions afforded by taking Tacrin allowed
Linda's mother to recognize and communicate with Linda and this reduced her
mother's anxiety and hostility. This connection opened the opportunity for both
mother and daughter to find ways to express their love for each other. It is possible
that Linda's mother felt a loss of her family when she was placed in a nursing home.
Her impaired cognitive function, together with unfamiliar surroundings, may have
prevented her from accessing her memory of her relationship with her family. The
renewed ability to recognize and connect with her family may have stirred what
Sacks referred to as an "answering identity," and Friedell referred to as a little shoot
in the garden of personality.
Beth McLeod (1999) provides another example of the importance of a loving,
reciprocal connection with an Alzheimer's disease sufferer whether the care takes
place in a home or an institution. McLeod explained that her mother had been very
unhappy when she was placed in a nursing home and kept packing her things so that
she could go home. McLeod tells the following story of finding a way to connect with
her mother:
One last evening we sat in the nursing home's activities room, listening to
classical music as Mom's fingers marked constricted phrases in her lap. For
the first time I broke down in her presence, confessing so much regret about
what had befallen her, how much I adored her. She understood. With a slight
tilt of her head she directed us to a pink balloon on the bookshelf. She wanted
to play a game, and so Bob and his second mother batted it around with their
67
heads, the two as one as we three became one, without a care in the world,
back and forth. Time stopped, and we had moments enough to love.
Then mother and I sat face to face. She crawled her fingers over to my knee to
touch it, to take my hand to her lap, her hands on either side, patting me,
gazing into me. In that moment we were connected in eternity. . .. Bob and I
walked to the door and waved, smiling, and she acknowledged us with a grin
. . . . She let go in full knowledge that she was loved and that she had loved
deeply, (p. 226)
This kind of connection that leads to a feeling of oneness with another and a sense of
timelessness is described often by those who have a close, caring relationship with a
loved one who has Alzheimer's disease.
McLeod (1999) provides several examples of family caregivers who are able
to establish a loving connection with a demented relative. She tells of filmmaker
Deborah Hoffman (1996), another daughter caring for a mother with Alzheimer's
disease, who recorded her experience in her documentary film, Complaints of a
Dutiful Daughter. McLeod quotes Deborah as saying that when she stopped
correcting her mother and accepted her as she was, it was less stressful for both.
McLeod explains, "It wasn't a big deal if it wasn't April or they weren't sorority
sisters. Doris still thought Deborah was someone she cares a lot about and was happy
to be with" (p. 207).
The following stories offer windows into the experience of families living in
the United States who are from cultures other than the dominant culture. Beth
McLeod tells the story of Tung and her mother who had suffered great affliction in
China before immigrating to America. Tung and her mother had a very conflicted
relationship, but Tung assumed the responsibility for her frail, elderly mother's care.
68
A turning point in their relationship came when Tung lost her temper over her
mother's mean-spirited behavior and unleashed a life-time of stored resentment. In
response to Tung's pouring out all the pain she had sustained because of her mother's
actions, her mother said, "I know. I'm trying to change." McLeod makes the
following interpretation:
Having a relationship with her mother at the end of life is something Tung
never expected. They had become a family, two people and two dogs. They
laughed a lot, more than ever because her mother could be silly and fun. She
feels they did have a kind of resolution even though they both were angry a
lot. But it was all right, (p. 214)
McLeod's stories of families struggling to find ways to care for their
demented and dying loved ones includes a range of cultural traditions. Her story of
Tung carries in it the dynamics of a first-generation Asian family who are pulled
between Eastern and Western traditions as they move through the stages of the life
cycle. In another story of a family reacting to problems caused by cultural
differences, a daughter had to remove her Native-American father from his homeland
in the Midwest. He had retired from teaching and hoped to live out his life close to
family and land that he loved, but because of a leaky gas valve in his apartment, he
suffered partial memory loss resulting from gas inhalation. He was judged mentally
incompetent, and the professionals treating him were mandated to report him to Adult
Protective Services. This agency committed him to an institution, removed his
belongings, and took over his finances. At his competency hearing, when asked how
he felt, he did a dance to show them he was not incompetent. The judge thought he
was crazy and assigned him to the guardianship of strangers. His daughter had to
remove him permanently to another state because he faces institutionalization if he
returns to his home state. McLeod offers the following comments from this daughter:
It isn't common sense to protect a person by removing their whole lifestyle.

When someone has dementia or memory loss and already has some difficulty
in self-expression, he is hesitant to communicate. If you place on top of that a
cultural difference, there is added prejudice in terms of not believing that
person is still there as a human being. (1999, p. 71)
This story speaks to the challenges and complexities that social services face in
responding to the needs of those with Alzheimer's disease, and to their caregivers.
Adult Protective Services was established to address the documented horrors of abuse
and neglect of the infirm and elderly, but as an agency it is only as competent and
effective as the people who staff it.
A common theme in many accounts written by family caregivers is frustration
over lack of services, lack of sensitivity, and lack of understanding the needs of
demented elders. Charlotte Akin, author of The Long Road Called Goodbye (2000),
advocates for one-to-one rather than institutional care for those with Alzheimer's
disease. Akin found foster care to be a good resource when she was faced with the
challenge of providing full-time care for her mother. Like Akin, professional writer
Aaron Alterra (1999) explains his determination to care for his wife at home and not
put her in an institution. In The Caregiver he describes the first 5 years of caring for
his wife who had Alzheimer's disease. He recounts the growing realization that
Medicare does not cover the kind of nonmedical costs such as aides and daycare for
mid- to late-stage Alzheimer's disease patients and reveals that in 1994, the second
year after his wife's Alzheimer's disease diagnosis, he spent over $40,000 on support
services and over $50,000 the following year.
Alterra (1999) expresses no regret over choosing in-home caregiving, but does
voice indignation that because Alzheimer's disease does not require medical
treatment, the expense of caregiving for those dying citizens must be borne by the
family until it can be proven that the Alzheimer's disease patient is at poverty level
and therefore qualifies for Medicaid. He points out that there is still a gap in care for
an elder at poverty level who doesn't require the skilled nursing of a nursing home
and often is not accepted in nursing homes because of problem behaviors, but still
needs 24-hour-a-day care. A poor, demented elder without a family caregiver who is
not accepted by a nursing home often lives in filth or is placed in a mental hospital,
some of which are similar to the one described in the story of Frau D., Dr.
Alzheimer's patient. The Eden Alternative movement, discussed previously, is one of
the most hopeful responses to the dilemma of how to provide quality care on a large
scale for the frail and elderly. This movement seeks to humanize the environment and
care of all the elderly, not just those who can afford private care.
One of the most anxiety-provoking images in the stories of both those who
have Alzheimer's disease, and of their caregivers, is the image of the nursing home.
The disturbing aspects of this image include the smell of urine; screaming, writhing,
drooping, drooling bodies; vacant eyes; and voices pleading "get me out of here,
please God, someone help me." The meaning that often underlies these physical
71
manifestations of distress and discomfort is that of feeling unloved, uncared for—
abandoned. Hodgson (1998) speaks poignantly of the decision to place her mother in
a nursing home: "I told Mom she had so many health problems that she needed
professional care. For Mom, one of her worst fears had come true; she thought we
had abandoned her" (p. 17).
Alterra (1999) speaks with commitment and also with resignation when he
explains his stance on putting his wife in a nursing home:
She is at home, wheelchair bound, and her speech is about gone, but she is in
good health. She sleeps a lot but is never depressed . . . when I think of
nursing homes—it seems to me the most wrenching words a caregiver can
hear must be, "I want to go home." (pp. 184-185)
Alterra (1999) puts this reflection in a larger perspective when he tells of a
time when he was putting his wife to bed, and she looked at him with no sign of
recognition and said, "I want to go home." Alterra concludes that "Home, ice cream,
people come and go, little valued in memory. Presence is what counts . . . If I
disappear, she will not have difficulty getting used to my absence" (p. 188). Alterra
sees his wife's lack of valuing him, together with her earlier lack of concern when her
best friend died, as lack of empathy and comments, "Of all the peculiarities of
Alzheimer's disease, the loss of empathy is to me the hardest to understand" (p. 189).
Alterra's concluding image of his relationship with his wife raises a question in my
mind about his wife's lack of awareness and lack of valuing the relationship between
them. Alterra tells a story about a response his wife made when he was tucking her
into bed one night. His wife had been an accomplished musician, and when Alterra
asked her why she was sleeping better, he relates, "Her voice stirs. I lean in to catch
what she may say. I don't necessarily expect an answer. . . . 'It plays on a different
reed,' she says distinctly." (p. 203)
Author John Bayley (1999) also describes haunting poetry and flashes of
lucidity that came unexpectedly from his wife, English novelist Iris Murdoch, when
she was in late-stage Alzheimer's disease. In his memoir of caring for his wife,
Bayley muses about Iris's comment that she was "sailing into darkness":
It seems to convey a terrible lucidity about what is going on. But can one be
lucid in such a way without possessing the consciousness that can produce
such language? And if consciousness can go on producing such words, why
not many more, equally lucid? Were I an expert on the brain, I should find it
hard to believe in such flashes of lucidity revealing, as it were, a whole silent
but conscious and watching world. It would be as if... a flash of lightning
were to reveal its existence, and then explorers found it didn't exist after all.
I noticed that the eerie felicities that Iris sometimes produced, such as "sailing
into the darkness" or "I see an angel," seem to come with a little help from her
friends. They're like the things a young child suddenly comes out with, to the
delight and amusement of parents and friends. But it was the friends or parents
who unconsciously did the suggesting. Must have been. (pp. 259-260).
Bayley is considering the significance of the relationship between Iris and friends,
and between parent and child. Does an empathic relationship between two people
facilitate or stimulate precocious responses? This question speaks to the value of
attunement and empathy in a caregiving relationship with someone who has
Alzheimer's disease. In further musing, Bayley (1999) wonders what is going on in
Iris's head:
Is she cognizant of an invention, a fairy tale instead of a memory? For a writer

of her scale and depth, the power of creating seems so much more important
than memory, almost as if it could now continue independent of it. And yet
the one seems to depend on the other.... So what are we remembering when
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we invent? (pp. 264-265)
These questions relate to a central interest of this study: what is present when
cognitive capacity deteriorates? The questions also recall the theories of Morris
Friedell about those with impaired cognitive capacity finding other ways to express
their gifts and essence, and the example of painter DeKooning's Alzheimer's
Expressionism. Bayley describes the changes in his relationship with Iris as a
response to Iris's increasing need for physical and emotional closeness:
Once I was outside her . . . not now. Every day we are physically closer . . .
Iris's little "mouse cry" signifying loneliness in the next room, the wish to be
back beside me, seems less and less forlorn, more simple, more natural. . .
She is not sailing into the dark: the voyage is over, and under the dark escort
of Alzheimer's, she has arrived somewhere. So have I. . . . As fish designed
their own eyes . . . the new marriage has designed itself to bring an end to her
fearful anxieties of apartness . . . she murmurs and I stroke her fingernails for
a moment noticing how long they are, and how dirty. I must cut them and
clean them again this morning, (pp. 267-268)
There seems to be a recurrent theme in these accounts by caregivers of the
importance of empathy and attunement to the person with Alzheimer's disease. In her
account of the struggle to provide in-home care for her husband who had Alzheimer's
disease, Lela Shanks states that the key to successful caregiving is to stay in touch
with the patient's humanity. Shanks' description at the beginning of this section
conveys the isolation she felt when she sought help for her husband during the first
consultation in 1986. Her story tells of how she gathered the inner and outer resources
to enable her to maintain a connection with her husband's humanity.
After the initial consultation in 1986, Lela Shanks (1999) began to gather
information and resources to support her in caring for her husband, Hughes. She
discovered that only two out of 3,000 physicians in her state specialized in geriatrics,
and that only 14 schools in the U.S. offered postdoctoral residency in gerontology or
geriatrics. Shanks began to locate resources such as daycare and information on Eden
Alternative which gave her hope that there was support for the kind of care she
wanted to give Hughes. She explains how helpful Raisberg's Global Deterioration
Scale was in giving her a sense of what challenges lay ahead of her. She comments:
Even though medical professionals shy away from talking about stages,
caregivers do not. I have never met a caregiver who did not speak in terms of
stages. In order to keep going day in and day out, caregivers need some sense
of where the patient is in the progression of the disease . . . even if they're
wrong. Thinking in terms of stages helps them better understand the patient's
behavior and what solutions may be possible, (p. 13)
As her husband's deterioration progressed, Shanks (1999) sought a second
evaluation in 1988 by a team of professionals—a psychiatrist, RN, social worker, and
pharmacist. She was again given few resources and little encouragement:
This time I was instructed to oversee Hughes' taking the medicine prescribed
. . . to check our home for safety measures and to stop Hughes from driving
. . . . I was also given 4 pamphlets, 1 on drugs and the others for making the
home environment safe. (p. 1)
When Shanks explained her commitment to caring for her husband at home, she was
encouraged not to do this. She was left with the impression that the clinicians could
diagnose but had no knowledge of how to manage Alzheimer's disease patients
outside of an institution.
Shanks's experience with healthcare professionals is not uncommon and
points to a gap in the response of professionals to Alzheimer's disease. There is a

75
need for the professional health care providers treating those with Alzheimer's
disease to educate themselves about the importance of intervening in matters such as
discontinuing driver's licenses, and in providing resources for caregivers. Certainly
drugs and safety are two very important issues in caregiving for those with
Alzheimer's disease. I recently heard a story of a woman who, like Shanks, was
determined to care for her husband at home. One day, while she was in another room,
her husband found a container of Clorox in a cupboard, drank the Clorox, and died.
But drugs and safety are only part of the complex challenge of caregiving. It is crucial
to discuss safety issues in order to prevent tragedy, not to discourage home care.
Shanks persisted in her determination to care for her husband in their home
and explains, "I believed nothing could destroy anyone's essential humanness. . . .
Were we, the so-called normal ones, the smart ones, not evolved enough to
accommodate our loved one in his own home?" (1999, p. 37). Shanks observed that
those with Alzheimer's disease are judged on their deficits, not their humanity, and
she regretted the absence of public or government aid for those with Alzheimer's
disease. She lists the major influences that led her to believe she could care for her
husband and still live her own life to the fullest: her African-American heritage, her
relationship with her parents, and her spiritual development that was supported by
two elderly white sisters (p. 3).
The importance of spiritual development for caregivers was also discussed by
Beth McLeod (1999), who believes she survived the demands of caregiving by
looking at it as a spiritual practice. She compares caregiving to the mythic descent to
the underworld—the descent of an initiate to a mysterious inner world:
Where latent strengths come forth to guide him home again, wiser and more
mature . . . this unwelcome territory . .. dark night of the soul. . . where
transformation happens at the bottom most point of despair . . . an initiation
into larger life aided by others who have learned the way out and appear when
help is most needed, (p. 6)
In her explanation of the spiritual dimension of caregiving, McLeod points out that
"women are traditional handmaidens to birth and also to death," and that more than
80% of unpaid caregivers are women (p. 29). She discusses not only the spiritual
resources she drew on, but also the outer resources she considers essential for
caregivers: "caregiving reposes on three supports-the health care system, finances,
and family" (p. 43).
The final resource in this survey of accounts written by family caregivers is
the data from my own unpublished research paper "Journey into the World of
Alzheimer's" (Cann, 2000). This research was conducted as fieldwork in partial
fulfillment of requirements for a PhD program in depth psychology at Pacifica
Graduate Institute. The research is based on interviews of staff and of family
members of residents in an Alzheimer's facility, as well as participatory observation
in an Alzheimer's facility. The data in this research project provides the core of one
of the narrative chapters in this dissertation.
In brief, as a result of my research I reached several conclusions about
caregiving for those who have Alzheimer's disease. My conclusions are not profound;
they are what I think of as common sense about human relationships. The challenge
lies in shifting from a detached mode of caregiving to an empathic, intuitive
approach. Through the experience of homemaking activities like making jam and
bread, preparing a Thanksgiving dinner with my family for my mother and her
fellow-residents in her Alzheimer's facility, and participating in a sing-along, I
became aware that there is a lot going on in the minds of those in an Alzheimer's
facility if you define mind as more than cognitive function. As I was making a batch
of cookies, residents came to the counter where I was working and related to me like
a family member they trusted, telling stories, and asking questions.
I also learned that there is a lot going on in the culture of an Alzheimer's
facility if you can engage in a reciprocal relationship with the residents. This requires
a different lens so that you can see through drooping bodies, zoned-out stares,
irrational conversation, irritability, anxiety, confusion, inability to speak and control
body functions—to the depth of the human spirit. The human spirit is evident in eyes
that grow soft and moist when a dead husband's name is mentioned, and in a man's
whole-body response as he begins singing "Happy Days Are Here Again" when he
sees his daughter walking toward him; and in the humor of a man who sits at a table
with a woman who needs on-going distraction from requests for coffee and says to
her, "Aren't you going to ask for a cup of coffee?"
I learned the potential value in baking and sharing meals and singing with the
residents in an Alzheimer's facility. Sharing these activities fed the soul as well as the
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body, helped develop a sense of community among residents and their family
members and provided an opportunity for reciprocal interactions and relationship. I
learned that empathic family caregivers can play a crucial role in the well-being of a
demented loved one, whether the setting is a facility or a home, and I learned that
government support in the form of financial aid for facilities, transportation, meal
deliveries, and daycare—plays a crucial role in making it possible for families to
provide good care for a loved one with Alzheimer's disease. I became aware of the
challenge facing our culture in the coming years: how can we develop resources to
provide good care for exponentially expanding numbers of elders with Alzheimer's
disease? The messages in the testimonies of family caregivers in this review of
literature speak clearly to the need for more education for both professionals and
families to meet the need for sensitivity and attunement, and for safe, caring
environments. How will we fund such caregiving, and where will we find enough
good caregivers? I believe that meeting these challenges requires a different way of
viewing Alzheimer's disease and the dying process.
Survey of the Experiences of Professional Caregivers
From the plethora of books written by professional caregivers on the subject
of caring for those with Alzheimer's disease, I begin this subsection by comparing
four texts. The difference in the tones of these texts conveys the shifting attitude
among professional caregivers towards those with Alzheimer's disease. The very title
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of Cohen and Eisdorfer's Loss of Self (2001) suggests that the demented patients lose
their core essence. These authors assert that:
Both the person with the illness and the family suffer with the inexorable
dissolution of self. Loss of sight, hearing, an arm, or a leg challenges a person
to cope with significant change. However, the individual with Alzheimer's
disease must eventually come to terms with a far more frightening prospect—
the complete loss of self. (p. 22)
These authors affirm that those with Alzheimer's disease are still human and need to
be understood, but the emphasis in this book is on finding humane ways to
understand, respond to, and manage the needs of those who are losing their very sense
of self.
The tone in Naomi Feil's Validation Breakthrough (1993) is less focused on
the tragedy and loss, and more focused on developing an empathic relationship with
those who have Alzheimer's disease. Feil's book stresses the fact that cognitively
impaired patients still have human needs and feelings and know when their feelings
are respected or dismissed. Feil teaches methods of responding to challenging
behaviors which are based on the ability to empathize with the feelings of the patient.
For example, when a patient insists that you take her home, Feil suggests such
techniques as reminiscing ("Tell me about your home") and shifting the focus of
attention, ("You want to go home. What would you do there?"). The emphasis in this
text is on understanding not just in the service of managing but in the service of
genuinely engaging in an empathic relationship in which the patient feels that what
80
she offers in the conversation is not just understood but also respected and validated
as a feeling the listener has also felt.
This empathic attitude toward the Alzheimer's patient is the central message
in the work of Bell and Troxell (2002) in their text, The Best Friend's Approach to
Alzheimer }s Care. This text was written for professionals in long-term care settings
and describes techniques that help caregivers make meaningful connections with their
patients:
The principles of good communication still apply in dementia care.

Communication is enhanced by good eye contact; specific, descriptive
language; appropriate gestures and body language . . . people with dementia
are particularly attuned to the caregiver's tone of voice, facial expression,
volume and hand gestures. It is as if you are speaking to someone looking for
cues and clues from the encounter and not relying completely on your actual
words. Similarly, you can look at the person's body language to judge his or
her mood. (p. 165)
Bell and Troxell (2002) go beyond managing the physical and emotional
needs and address the spiritual needs of those with Alzheimer's disease:
Rather than allow the person with dementia to become spiritually bereft, it is
important to treat the human spirit; to open opportunities for spiritual needs to
be met. On the reverse side, the goal of caregivers should not be to spoon-feed
spirituality down the throats of people with dementia. The goal is to create a
spiritual space or moment for them. (p. 210)
The authors cite examples of ways to do this. For example, uncovering comforting
traditions such as giving rosary beads to a woman for whom they are a calming
resource, or playing favorite music can help people with Alzheimer's disease
experience a spiritual moment.

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The title of the fourth text I have chosen to discuss at the beginning of this subsection
emphasizes the shift in attitude that is occurring in the field of caregiving for
Alzheimer's disease patients. In There's Still a Person in There, Castleman,
Gallagher-Thompson, and Naythons (1999) describe the challenges of caring for
those with Alzheimer's disease. Woven into the stories of Alzheimer's disease
patients and their caregivers in this text are explanations of resources and therapeutic
approaches such as cognitive behavioral and behavioral modification techniques. One
of the underlying goals in this text is to point out the negative attitude toward
Alzheimer's disease in America and to illustrate through actual stories about those
with Alzheimer's disease some of the creative responses that have developed because
of attuned, caring relationships with these patients. The authors quote a woman who
was a caregiver for her husband who had Alzheimer's disease: "the process was not
as grim as the stereotypes suggest. Even as he became increasingly confused and
impaired, his fundamental personality remained. There was still a person there" (p.
15).
In a January 31, 2000, Newsweek article, "Coping with Darkness," Claudia
Kalb (2000) provides a fuller picture of the changes evolving in caregiving for
Alzheimer's disease patients. Kalb explains that "for most of the last century,
dementia patients were closeted in homes, nursing homes, or asylums—often
restrained by locked doors and sedatives" (p. 52). Kalb adds that until recently health
professionals used an approach called reality orientation, based on the belief that
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continually correcting errors of those with Alzheimer's disease ("no, I'm not your
sister") helped to ground them in reality and slowed their deterioration.
According to Kalb, current theories on caregiving for Alzheimer's disease
reject reality orientation as "unnecessarily combative, antagonizing patients and
frustrating caregivers" (p. 52). Kalb describes Naomi Feil as a pioneer in making
changes in caregiving techniques. She explains that Feil, who received training in
caregiving in the 1960s, saw how ineffective it was to correct those with Alzheimer's
disease, and developed Validation Therapy.
Kalb (2000) describes many other techniques of caring for those with
Alzheimer's disease. These are often simple techniques like one-to-one conversation
to reduce anxiety and boredom, and music, art, and aromatherapy, which offer some
relief for agitation and irritability. The goal, maintains Kalb, is to keep the patient
active and engaged with life. She tells a story of a music therapist who was
conducting a drum circle with Alzheimer's patients. During the drumming a quiet
woman grabbed a tambourine and began playing a complicated rhythm: "the woman
had advanced Alzheimer's disease and could barely speak. But her desire to
communicate and her spirit were very much alive" (p. 54). She was demonstrating
that she was still there and could be productive.
Kalb (2000) explains that one of the most dramatic changes in caregiving is
the design of an environment that is especially suited for those with Alzheimer's
disease. These environments include plenty of light to eliminate frightening shadows

83
and reduce depression, as well as gardens with circular paths to provide an outlet for
the pacing that is typical of Alzheimer's disease patients. Kalb notes that there are a
range of options in residential facilities. At one end of the range, there are small,
homey settings and at the other end of the range there are large facilities owned in
some cases by hotel chains like Marriott. These large facilities offer many amenities
like field trips and activities programs (pp. 52-53).
These changes, observes Kalb (2000), do not take away the negative aspects
of caregiving: "To be sure, caring for a loved one with Alzheimer's disease still is a
horrific burden for most people . . . stressful and enormously expensive, with few
services covered by insurance" (p. 52). In this comment she speaks to the need for
better ways of caring, but also portrays caregiving as a horrific burden. There are
many reasons for this negative attitude. Some stem from the fact that there continues
to be a lack of available and affordable resources for the care of those with
Alzheimer's disease. Another reason for the negative attitude, I believe, is the
negative attitude toward cognitive decline and the dying process. This reason raises
one of the questions at the center of this work: is there a way to understand, or see,
the decline of Alzheimer's disease as anything other than a horrific experience?
Eden Alternative, which has been discussed several times in previous sections,
offers a philosophy developed from research and experience in bringing about
changes in caregiving. In 1991 William Thomas and his wife Judy began to develop
strategies that address what they describe as the three plagues of nursing homes:
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loneliness, helplessness, and boredom. Thomas (1996) asserts that these three plagues
are "impervious to the silver bullets of medicine," and explains that before the
Depression frail elders were cared for in substandard institutions along with "the
retarded, the insane and the immoral" (p. 25). He points out that Vladeck's Unloving
Care: The Nursing Home Tragedy (1980) became a prod to improve standards in
nursing homes, raise federal and state standards, and establish geriatrics as a
legitimate medical sub-specialty (pp. 13, 19).
Thomas's (1996) central goal has been to bring about changes in the
environment of nursing homes and to change the way our culture thinks about and
cares for elders. He has focused not so much on the architectural design and new
therapies in nursing home care as on finding ways to bring the living pulse of the
earth and the community into nursing homes that have traditionally been cut off from
the natural world of living creatures. He comments that "the typical resident of the
typical nursing home is bloated with therapy and starving for care" (p. 17), and offers
the following description of his goal:
We found in nursing homes a human habitat so completely cut off from the
living world and the virtues of love, trust, patience and forgiveness that it
cried out for change. Since then we have helped hundreds of facilities make
the difficult transition from institution to life-giving garden. (Thomas, 1999, p.
225)
Thomas points out that the principles of Eden Alternative are old, but need to be
revived:
The challenge before us, then, is not one of discovery but of practice. How
can we tame the modern system of industrialized work and materialist
consumption before it subdues our spirits completely? How can we reassert
our fundamental humanness in the face of modern life and all its challenges?
85
A poet once said the world is not made of atoms but of stories. Stories carry
wisdom from person to person. They always have, and they always will. Our
deliverance lies in the sharing of stories, (p. 226)
Thomas (1996) explains that his medical training had led him to think of
himself as a master mechanic specializing in the human body and, as such, took a dim
view of caring for patients in nursing homes: "Like any good mechanic, I was eager
to use my new tools and skills. Struggling to keep a worn-out jalopy on the road is
drudgery compared with fine-tuning a late-model sports car" (p. 7). He observes that
in the 1990s residents in nursing homes are still over-medicated, and admits that as a
private practitioner, "I squeezed my visits to the nursing home in between trips to the
hospital and the grocery store . . . how could I take care of people who were so far
gone" (p. xiii).
Thomas (1999) developed Eden Alternative as a response to the poor quality
of life of the residents and to the general negative attitude about frail elders and
nursing home care. He agrees with the theory of Lawrence Cohen, cited previously,
that in a human community the wisdom of the elders grows in direct proportion to the
honor and respect accorded to them (p. 211). Thomas describes the following changes
advocated by Eden Alternative:
Eden Alternative is a new way of thinking about nursing homes. It employs

principles of ecology and anthropology in the struggle to improve residents'
quality of life. .. . The Eden Alternative is a human habitat built from songs of
birds, echoes of children's laughter, and tender shoots of green growing
plants. (1996, p. 2)
Thomas's pointed remark about respecting the wisdom of elders raises, again,
the questions of why our culture does not respect elders and how we can address this
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lack of respect. In Symphony of Spirits, Dr. Deborah Forrest (2000) describes
personal experiences that respond to these questions about how to value elders, and
how to respond sensitively to cognitive decline and the dying process. Dr. Forrest is a
clinical psychologist and registered nurse who studied with Dr. Elizabeth Kubler-
Ross and completed a year-long postdoctoral fellowship in geriatric neuropsychology.
Dr. Forrest relates stories of caring for patients in a geriatric ward called a gero-
neuro-psychiatric unit and tells of the mentoring she was given by three Native-
American and Afro-Caribbean caregivers (Dolly, Rose, and Nancy), who were
steeped in an ancient, shamanic spiritual tradition. These caregivers helped Dr.
Forrest access and develop her empathic and intuitive abilities so that she could
engage with the spiritual dimension of her patients and see meaning in the dying
process.
Dolly, Rose, and Nancy taught Dr. Forrest (2000) about Native American
customs and beliefs concerning the esteemed role of the aged in the tribe and
explained that a demented elder is deemed to have extra-special gifts: "The farther
these diseases progress, the more spiritually active these people become .. . their
spirits can always hear you, even if their brains don't appear to be working very well"
(p. 32). These caregivers described a shamanic view of reality where the spirit world
exists in parallel with the physical world and where time is circular and infinite, not
linear, and finite. The caregivers explained to Dr. Forrest that if she lived in a one-
dimensional world where she only believed in what she could discern with her
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physical senses, the patients she was caring for will only be what they physically
appear to be—demented, old, and dying (p. 36). After demonstrating how the
demented elderly, some of whom were in a vegetative state, responded to music, the
caregivers commented to Dr. Forrest, "At least now we have identified one doorway
into the spirit world that your linear mind can understand" (p. 54).
Dr. Forrest (2000) describes a shift in her attitude as she began to be aware of
a connection to patients she had considered beyond reach and to feel more personally
involved with these patients. The caregivers confronted Dr. Forrest's doubts as blocks
to her ability to see the spiritual dimension of the world and of her patients:
If a person's own spirit has not developed or advanced to its proper level of
fulfillment, then the heart cannot adequately assume its role in balancing the
person's thinking. If doubts about the spirit world spill forth from your mouth,
your ability to know the spirit will remain blocked when the sounds come
back to your brain, (p. 78)
These caregivers passed on to Dr. Forrest stories they heard from their grandmothers
about the spirit world. They had been told that the veil that separates the spirit world
from ours grows thinner with age, and that, as the end of this life approaches, visions
of the other side get clearer and one's ability to talk to the spirits of loved ones on the
other side gets easier (p. 195).
Under the mentoring guidance of these caregivers, Dr. Forrest (2000) began to
hear the spirit world through music and to receive messages from the eyes of her
patients and, in one case, to see a physical apparition surrounding her patient:
The object hovering above this pale woman was even less vivid. It had just
enough light and dark to form vague features with little depth. So there was
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very little dimensionality to the real woman or the vision. The images
blended, and it was difficult to tell where one ended and the other began. But I
slowly accepted that I was seeing some apparition of Sara—an opaque, misty,
unexplainable version of the human form. Earlier that morning I had given the
old woman a bed bath. She seemed to recognize me, and sighed her weariness.
With her eyes half open she looked up at me. Her eyes said she was tired of it
all, that she had had enough and she was ready to die. . . . She wanted to go
home. . . . I now felt the apparition was the spirit of Sara—perhaps the thing
some people call a soul. People were not supposed to be able actually to see a
person's soul. . . . But there was no mistaking that this was part of Sara—it
was Sara's essence.. . . Was this a figment of my imagination? . . . Again with
Sara, it was like being in suspended animation, being frozen in place. When it
was over, I was aware of everything else happening around me—carts coming
and going, phones ringing—and there I was standing in front of this withered
old woman, (pp. 92, 94, 95)
During her work with Dolly, Rose, and Nancy, Dr. Forrest (2000) participated
in a workshop with Dr. Kubler-Ross and was amazed and bolstered by the fact that
the Four Quadrant Theory of Personality Development taught by Dr. Kubler-Ross
was so similar to the shamanic teachings of the three caregivers. Both the theory and
the shamanic teachings maintained that spiritual development accelerates as a person
moves closer to death:
Dolly and Rose insisted that they could see the spirits of patients with
advanced dementia more clearly than those of other elderly patients with
intact thinking and remembering abilities. Since these old people were closer
to death, their spirit images were stronger. And since their earthly mental
processes were suspended by their disease, their natures were the only things
functioning within them. (p. 73)
Dr. Forrest's (2000) experience provides a response to the questions of how to
see dementia and dying in a different way. She believes the capacity to engage with
the spiritual dimension of a demented patient is crucial in day-to-day caregiving. She
offers the following comments on the wisdom of her Native-American mentors:

89
They had grown up in cultural contexts that supported and nourished this
belief system—the shamanic acceptance of this sixth dimension, a sixth sense.
Their culture honored intuitive abilities. With that support came a whole
educational process that nurtured such natural ability rather than teasing it or
threatening it out of existence. In my situation, coming from a traditional
European orientation, I had to unlearn what I had been taught in the past so I
could understand these new lessons. Nurses were taught by professors and
reminded daily by doctors to develop and maintain an emotional distance
from the patients, (p. 97)
Another professional caregiver who speaks of the importance of the spiritual
dimension in caring for frail elders, Ann Cason (2001) draws from a Buddhist
spiritual practice in her work of helping families arrange a circle of care for a dying
elder. Ann offers a great store of knowledge in the practical matters of setting up a
care team—assessing needs, finding and coordinating resources, and working with
specific challenges like mood swings and confusion. I had the good fortune to consult
with Cason when my mother was moving into what Hospice calls the active dying
phase. I experienced her attunement to the quality of my mother's environment and
appreciated her suggestions that I bring fresh flowers to my mother's room and that I
invite a sensitive friend to have tea with my mother and me. These were ways of
enriching the feeling in my mother's room. In her book, Circle of Care, Cason speaks
of good care as the kind of care that helps the spirits soar. She explains that growing
old requires a shift from doing to being and asserts that the caregiver is the protector
of the elder's being:
You will begin to see old people not only as providers of anxiety but also as
teachers who are taking their caregivers on a journey of the heart. In the
process, you will be touched by the goodness of life, a life that includes the
knowing of death, (p. xxi)
Caregiving in the Final Stage of Alzheimer's Disease
The texts in this subsection were valuable resources for me as my mother
moved through the final stage of Alzheimer's disease. They address questions about
the relationship between life and death and between mind and body. They describe
efforts to change cultural attitudes toward the dying as well as toward the care of the
dying. The focus in this literature is mainly on how to change end-of-life care. One of
the most well-known documentaries on the subject of dying is the PBS documentary
On Our Terms produced by Bill and Judith Moyers in 2000. In an article titled "A
Call to Action," Barrett Seaman describes the Moyers' goals of raising public
awareness about American attitudes toward death and promoting a dialogue about
end-stage care issues (2000, p. 14). Another pioneer in raising awareness about end-
stage care, physician Ira Byock, in Dying Well (1997), asserts that physical pain can
always be alleviated and often the anguish of the dying experience can be soothed by
the calm presence of a caregiver (p. xiv). Byock, who has specialized in care for the
dying for 17 years and is president of the American Academy of Hospice and
Palliative Medicine, believes it is possible to hope for a future where no one has to
die alone or in untreated pain.
Byock (1997) like many of the authors in this Literature Review, believes that
"stories are the only satisfying way I know of exploring the paradox that people can
become stronger and more whole as physical weakness becomes overwhelming and
life itself wanes" (p. xiv). He offers the following insight:

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By telling the stories of people who have died well, those of us who have
cared for the dying, personally or professionally, can contribute in a vital way.
The accounts of people from communities who have grown personally and
contributed to the growth of others in the process of their dying can serve as
sparks within the tinder of our decaying health care system, igniting the
imagination of Americans, (p. 247)
Byock stresses the importance of the imagination in developing more enlightened and
loving community care for members who are dying:
Imagination is key, because the crisis of terminal care has so many sources
and so many manifestations that a piecemeal, mechanistic approach could
never be enough. Only imagination, working on the level of shared values and
expectations has the power to effect the required cultural transformation, (p.
247)
Byock's point that it will take more than a mechanistic approach to achieve cultural
transformation in care for the dying, and his emphasis on the value of stories and the
imagination in bringing about this change speaks to a central goal of this study. The
role of the imagination and the collective level of the human mind in seeing dementia
differently will be described in the sections on Jungian and archetypal psychology.
Journalist Marilyn Webb (1997) agrees with Byock's emphasis on the need
for changes in public policy and social institutions, and with his emphasis on the
importance of stories in bringing about change. In The Good Death, Webb presents
intimate portraits of the experience of dying and describes changes in care for the
dying that began with Elizabeth Kubler-Ross in 1965 and were propelled by the
Hospice movement that took hold in America in the 1970s. She comments that our
culture is unfamiliar with death and in need of stories and myths to provide guidance
about the role of the dying in the life of a culture: "so that the end of life is worthy
and valid, comfortable and comforted" (pp. xviii-xix).
Webb's (1997) stories address the question of mind and its relationship to
body. She relates a story told by Dr. Rachel Naomi Remen of a physician who, at 15
years old, was at home with his 17-year-old brother caring for their father who had
Alzheimer's disease and had been unable to speak for 10 years. Their mother had
gone out to run errands and the brothers were watching a football game when
suddenly their father had a heart attack. The 15-year-old kneeled near his father and
told his brother to call 911. The father spoke for the first time in 10 years and said,
"No son, don't call 9 1 1 . . . . Tell your mother I am okay. Tell her that I love her."
With that he died (p. 262). Dr. Remen follows the story with the fact that an autopsy
revealed the man's brain was almost totally destroyed by Alzheimer's disease.
Remen, in response to this story asked, "Who spoke?" (p. 262).
Webb (1997) addresses the significance of the mind in the dying process. She
draws a comparison between Dr. Remen's understanding of mind and the theories of
Sigmund Freud:
For Dr. Remen, as for Freud before her, meaning is carried in the unconscious
rather than in the conscious mind. She helps her patients to connect with their
life's meaning through stories, and also uses the methods of modern
psychology to elicit the wisdom of the unconscious mind—attention to the
images in memories, dreams, poetry, writing, artwork, (pp. 262-263)
Webb also notes a parallel between Remen's techniques and the theories of Carl Jung,
commenting that Remen's work echoes Jung's notion of the collective unconscious
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when she maintains that there is "a larger human memory, or a universal wisdom that
speaks through all of us" (p. 263).
Webb (1997) draws from the research of Grof and Halifax, who used LSD
with dying patients. Webb explains that this research led to theories on the
psychological experience of dying and the belief that drugs such as LSD can help the
dying open emotionally, resolve personal and family issues, and experience ahead of
time the kind of transcendence they might face at death (p. 267). This research uses
the term out of body to describe experiences of people under the influence of LSD,
and implies that mind is an entity separate from, rather than in relationship with, the
body.
In considering these subjects—the psychological experience of dying and the
relationship between mind and body—Kathleen Dowling Singh (1998) offers
psychological and spiritual theories of development which focus on human
experience that extends beyond the personal self into a larger context—a spiritual
dimension that transcends personal consciousness. Singh works with dying patients in
a Florida Hospice and explains that her goal is to "shed light on the essential unity of
dying, contemplative practice and spiritual growth" (p. ix). In order to understand this
unity, she urges people to prepare for death by developing a spiritual practice: "So, go
and rest or go and pray or go and meditate, that when you begin to enter the realms of
the sacred you will resonate with those realms gently" (p. 1). Singh (1998) includes in
this discussion descriptions of the transformation of the dying process, which she
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defines as the end of a particularity—loss of a particular body and self. She draws
descriptions of dying from such varied sources as Ars Moriendi, Tibetan Book of the
Dead, and quotations from Sherwin Nuland and Stephen Levine. She quotes Nuland's
portrayal of death as the separation of mind from body:
The appearance of a newly lifeless face cannot be mistaken for

unconsciousness. Within a minute after the heart stops beating, the face takes
on the grey-white pallor of death; in an uncanny way, the features very soon
appear corpse-like, even to those who have never before seen a dead body. (p.
215)
This discussion leans in the direction of the Western attitude toward the body
as tomb for the soul. The emphasis in Singh's discussion is on the goal of
transcending the body during the dying process. In contrast to this goal are
approaches to care of the dying that seem to focus on the importance of the body as
pivotal in opening to a context larger than but inclusive of the particularity of the self.
These approaches tend the personal body—life history, and personal relationships—
so that the personal opens to the larger context, as opposed to meditating as a means
to detach from the personal. Singh emphasizes the importance of loss of particularity
rather than a relationship between particularity and the larger context of the whole of
creation. She also maintains that "the task at mid-life is to know ourselves to be the
consciousness that is using our body as a vehicle of spirit's experience-in-form" (p.
54). The comment that our consciousness is using our body as a vehicle conveys a
sense of body as object, not as vital component of the spirit's "experience in form."
The experience-in-form is the particularity forged by the spirit's incarnation—the

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interwoven nature of spirit and body—the soul—that transcends the limitations of the
body.
As proponents of care for the dying who focus on the body and mind from a
holistic rather than dualistic view, authors Jann Staton, Roger Shuy, and Ira Byock, in
A Few Months to Live: Different Paths to Life's End (2001), present the results of
research based on stories of particular people who are dying. These authors found that
spiritual growth and transformation in the experience of dying involve many
factors—all grounded in the "connection of the individual person to a larger-than-self
reality—one's family, a Supreme Being, the spirit of oneness in a fellowship or
community of faith, or rejoining the oneness of creation and nature" (p. 241). The
emphasis here is on the relationship between the individual and a larger-than-self
reality, rather than on loss or detachment from particularity. This study is part of the
Missoula Demonstration Project: The Quality of Life's End, created to study end-of-
life experiences and convene the Missoula Community in efforts to improve end-of-
life care (p. viii).
Staton, Shuy, & Byock (2001) describe the experience of dying from the
perspective of nine terminally ill people and their caregivers, showing how these
individuals struggled to maintain connection with life, find meaning, and grow as
they were dying. They address sources of psychological and spiritual strength and
discuss various cultural constraints or scripts, such as a religious or medical script,
that provide a way of making sense of one's life and of the dying process. They offer
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the following explanation of the psychological and spiritual aspects of the dying
process:
Modern psychology increasingly regards spiritual and religious practices as

reflecting an inherently meaningful human motivation toward connection with
others—a motivation that is more primal and broader than any specific
religious belief or system. This concept encompasses necessarily subjective
experiences of "communion with a larger whole"—a primal sense of
participating in something that is larger than the self, beyond one's current
physical existence, (p. 241)
The use of the word communion connotes a relationship between the personal self and
the larger whole rather than a submerging of the personal in the whole. The authors
define spiritual growth at the end of life as the process of making meaning of one's
life through relationship to oneself, to others, to nature or to a transcendental realm.
The research of these authors recalls the work of John Bowlby on attachment and
loss, and of Erik Erikson's stages of human development, the final stage of which—
integrity versus despair—requires that one find meaning in the life one has lived in
order to avoid falling into isolation and despair.
Staton, Shuy, & Byock (2001) conclude their study with the observation that
healthcare for the dying is fragmented and not easy to access, requiring families to
struggle to find resources for care of a dying loved one. They explain that the
Missoula Demonstration Project's Life Stories Task Force has raised the awareness of
the importance of collective memories and that the goal of Missoula Demonstration
Project's community initiative is to build a community that accepts and integrates
dying, grieving, and caregiving within the normal fabric of life (p. 323). These
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authors state that Missoula Demonstration Project's research and community
engagement activities reflect a commitment to act locally while integrating local and
national perspectives, and assert that "Missoula's citizens have an opportunity to
serve our nation simply by caring for one another locally in ways that combine
medical excellence with compassionate and genuinely tender care" (p. 324). They
offer an image of their goal: a teenager stops to check on a frail neighbor on his way
home from school, not because someone told him to but because it would feel
unnatural not to (p. 324).
Another member of the Missoula community who has made a major
contribution to end-of-life care is Therese Schroeder-Sheker, founder of the Chalice
of Repose, a program based in Missoula that trains music thanatologists. Her work,
like that of several other resources in this Literature Review, provides relevant
insights in all three views of Alzheimer's disease—the medical, cultural, and
psychological. The training of music thanatologists includes courses in physiology so
that the musician can observe the behavior of the body as an indication of the
physical and psychological state of the patient, and attune the music to a
communication with the body in the goal of reciprocal engagement between patient
and therapist. Music therapy has become a department in many hospitals as a part of
medical care, and has become a resource called upon by Hospice and nursing homes.
In "The Last Note," Schroeder-Sheker (2002) relates the story of how she was
called to care for the dying. As a college student she worked part-time in a geriatric
98
home where many residents were either sedated into a stupor, or in unmitigated pain.
She comments that "their deaths were characterized by the spiritual suffering that
goes along with abandonment, isolation, disfigurement, depression, and overall loss
of meaning. Many died accompanied by the blare of television, the canned laughter of
"I Love Lucy" reruns (p. 35). Schroeder-Sheker tells a story of responding to a
cantankerous man who was close to death and very agitated. She describes his
response when she sat close and held him, singing softly to him:
He shifted. The desperate thrashing stopped. The rattle quieted; we might

have been together for as much as forty-five minutes. This man who had a
history of pushing everyone away actually trusted me, rested into me, and
slowly, because of the quiet singing, we began to breathe together, (p. 37)
There is, in Schroeder-Sheker's description of her work with those who are
dying, an attunement to the body as physical expression of the inner state of a patient.
Her description conveys recognition of a bond between body and spirit, physical and
spiritual. In the dying process, the person is attached to life—the physical body and
the material world, and this attachment is loosening. In much of the recent literature
on end-of-life care there is the message that it is crucial to minister to both body and
spirit in the dying process. To treat only the body, as has been done by the medical
approach, or only the spirit, as is advocated by those who encourage detachment from
the body, neglects the whole person.
Rebecca Sacks Norris (2002) offers further reflection on the dying process
and the relationship between life and death in "With A Steady Eye," written in
response to the tragedy and death of 9/11. She discusses several cultural traditions
which offer transformative means of responding to dying and death. She comments
on the connection between life and death that is intoned in the Catholic prayer: "Hail
Mary, pray for us now and at the hour of our death" (p. 71), and offers a comment
pertinent to this study's concern about the relationship between mind and body and
the relevance of this relationship in the dying process:
Extreme meditation is not needed to reach a deathless state; mindfulness of

the body is also practiced to this end. How can the mortal body be an
instrument of spiritual states intended to transcend death? These states,
indicated by terms such as "attention," and the practice of the presence of God
. . . are actually states of the body itself. They are not merely states of the body
. . . rather through the body spiritual states are learned and the transcendent is
experienced. We are embodied beings, and our consciousness and spirit exist
in relation to that reality, (p. 72)
And so, a central challenge in providing care for the dying is holding the
tension between life and death, body and mind, during the dying process—a process
of moving from life to death and from the particularity of the body to the
expansiveness of the mind. Holding the tension requires a sense of their relationship
as parts of the experience of wholeness and requires an understanding of the
complexity of wholeness—where particularity is not negated but understood as a
dynamic part of the whole, and where inner life is recognized as a viable part of the
whole of the person dying. Understanding the complexity of the whole means
recognizing the mystery of the dynamic relationship between opposites such as life
and death, body and soul. This understanding is often described as a knowledge of the
heart—not a literal, rational knowledge.

100
In "Grandfather Death," Madronna Holden (2002) speaks of the healing
alliance between life and death: "In the natural world, life and death give rise to one
another. There is no fertility without decay . . . our power to heal is only as good as
our capacity to yield to death" (p. 22). Holden's use of the terms fertility and decay to
speak of the physical and psychological aspects of the alliance between life and death
recalls the ancient Greek fertility ritual that became the Eleusinian Mystery Tradition,
a tradition that enabled initiates to understand the relationship between life and death.
Greek biographer Plutarch exclaimed that an Eleusinian initiate need never fear death.
The meaning of this Mystery Tradition as it relates to the Alzheimer's disease
experience will be explored in the narrative chapters.
A caregiver who recognizes the mysterious relationship between life and
death is able to guide the healing and transforming that can take place if a dying
person is held and supported in the process of yielding and opening to death. Holden
(2002) tells several folk tales about the human fear of death and explores the
importance of becoming intimate with death, commenting that "emotional intimacy
with death is the key experience of many traditional initiation ceremonies," and
concludes that in these traditions "the process of letting go was essential to a good
death" (pp. 22-25). She speaks to our culture's aversion to death and preoccupation
with youth by telling a story of a king who was condemned to row back and forth
across a river eternally because "he never learned to pass on his oars" (p. 25).
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Holden's article discusses the many challenges in life that give us the
opportunity to experience yielding to something beyond our control as practice for
yielding to death. The long, slow process of dying in the Alzheimer's disease
experience offers many such challenges. People who have Alzheimer's disease can be
supported in yielding to death by caregivers who understand the psychological
experience of dying, and can care in ways that enable healing and transformation.
Psychological View of Alzheimer }s Disease
This section of the Literature Review provides the foundation for the
psychological view of Alzheimer's disease. It begins with resources that address the
complexity of defining mind, of understanding the relationship between mind and
body, and that speak to the challenges of including inner experience in the treatment
of patients with neurological disorders such as epilepsy and Alzheimer's disease. The
texts in this initial description provide the context for an explanation of what is
missing in the current psychological approach to the treatment of Alzheimer's
disease, and for a description of depth psychology and its potential for contributing to
what is missing in the treatment of Alzheimer's disease.
As the medical view traditionally focuses on the physical body of the patient
and the cultural view focuses on the cultural milieu of the patient, the psychological
view focuses on the inner experience of the patient. The myriad dimensions of inner
experience are more difficult to define and treat because of their elusive nature. In his
book, A Leg to Stand On, Oliver Sacks (1994) speaks to the challenge of defining and
including the psychological aspect in the treatment of neurological disorders without
falling into the dualistic mode so prevalent in the medical model of treating physical
and psychological aspects of disorders as separate issues. In this book Sacks discusses
the incapacity of the field of neurology to address his experience as a patient who
suffered with an "alien limb," and he explores the need for a personal neurology
which includes the subject's experience and the physical basis of the self.
Sacks (1994) tells the story of the great neurologist of the 1880s, Jean Martin
Charcot, who asked his pupils, F. F. Babinski and Sigmund Freud to differentiate
between organic and hysterical paralyses, and describes Freud's discovery that
organic paralyses have patterns that obey neuroanatomy but have no intrinsic psychic
component:
Hysterical paralyses have no anatomical damage in the nervous system but are
caused by damage related to concepts and feelings generated by psychic
trauma, but then defensively dissociated and repressed . . . the hysterical
paralyses make psychic or psychodynamic sense but have no underlying
anatomical component. The organic paralyses, to Freud, were "physical," the
hysterical (and by implication, all others) were "mental." (p. 189)
Sacks (1994) points out that Charcot's question was dualistic, "a plea to
distinguish the physical and mental" (p. 189). In the following comment, Sacks
explores the need for what he calls neurology of identity, explaining that this
neurology would include subjective experience in the study of physical disorders:
We are in no sense machines or impersonal automata; that all perception is

self-referential from the start; that our memories are nothing like the
memories of computers, but are organizations and categorizations of personal
experience . . . that our bodies are personal—that they are the first definers of
the self. . . . But none of this has really entered neurology, for the realization
that our nerves and brains are ours from the start, and that in their perceptions,
categorizations and memories and models, and in their emergent levels of
concept and consciousness they continue to be ours, to be self-referent
through and through, (p. 203)
Sacks refers to the work of Gerald Edelman who uses the term primary
consciousness to describe the development of a lower-level order of consciousness.
Drawing from Edelman's theories, Sacks defines primary consciousness and explains
that the perceptual processes of consciousness begin in the body and evolve to a
higher-level consciousness:
Primary consciousness is this single process, so Edelman theorizes, from

perceptual categorization, memory, learning and self/non-self discrimination.
And from this primary consciousness, a higher-order consciousness evolves in
man, with the powers of language, conception and thought. Consciousness,
thus conceived, is essentially personal; it is essentially connected to the actual
living body . . . and it is based on memory, on a remembering which
continually reconstructs and recategorizes itself, (pp. 199-200)
Sacks emphasizes that the entire body, not just the brain, is the holder of the
emergent and dynamic nature of identity, organizing experience in a way that
influences subjective experience, and he calls for a study of the interface between
body and mind—physical and psychic—as a means of a deeper understanding of
neurological disorder. This view, that the nature of identity is emergent and dynamic
and is held in the entire body, challenges Kaplan and Sadock's comment in Synopsis
of Psychiatry (2003) that "the self is a product of brain functioning" (p. 341).
In his book, The Man Who Mistook His Wife for a Hat (1990), Sacks
suggested that the way to study the interface between mind and body was through
story:
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To restore the human subject at the center . . . we must deepen the case history
to a narrative or tale; only then do we have a "who" as well as a "what," a real
person, a patient, in relation to disease—in relation to the physical, (p viii)
In turning to stories as a way of understanding the interface of mind and body, Sacks
is drawing on the ancient tradition of creating myths to convey an understanding of
the depth and complexity of the human experience, including the experience of
mental disorder. He offers the following explanation of the importance of stories:
I feel compelled to speak of tales and fables as well as cases. The scientific
and the romantic cry out to come together—Luria liked to speak here of
"romantic science." They come together at the intersection of fact and fable—
classical fables have archetypal figures—heroes, victims, martyrs, warriors.
Neurological patients are all of these—and in these strange tales they are
something more—we may say they are travelers to unimaginable lands—
lands of which otherwise we should have no idea or conception. This is why
their lives and journeys seem to me to have a quality of the fabulous, (p. ix)
Sacks speaks to my experience in an Alzheimer's facility. I met heroes, victims,
martyrs—travelers to unimaginable lands.
Adrienne Richard (2004), in an article titled "Integrating Mind, Brain, Body,
and Spirit in treating Epilepsy," also discusses an approach to neurological disorder
which integrates the medical and psychological aspects of treatment. Richard offers
the following description of the difference between the focus of neurologists and of
psychiatrists when observing the pathological phenomenon of an epileptic seizure:
The neurologist sees the pathological seizure discharge as arising in a

particular structure and spreading through distinct brain areas. The psychiatrist
sees the aura (which is the beginning of the seizure discharge) as an
experience which is followed by an alteration in the subjective world of the
sufferer as the epileptic discharge sweeps through his/her brain. Within the
seizure discharge is the synthesis of neurology and psychiatry. (2004)
Richard describes the psychological aspects of a neurological disorder as subjective
experience and she includes psychosocial symptoms (inner experience of and
response to social environment), and mood disorders such as depression, deeply
conflicted feelings, and self-esteem issues as the focus of psychological treatment.
The subjective experience which Richard cites as the focus of the
psychological view of neuropathology, has been referred to for centuries in academic
literature as mind, and has been considered a separate entity entombed in the body in
dualistic Western cultures. In post-Cartesian, Western cultures, the word mind
commonly refers to the conscious, rational dimension of inner experience. In this
study I am defining mind as "the totality of conscious and unconscious mental
processes of an organism" (Stein, 1966, p. 911). Thus mind, as the focus of the
psychological view of Alzheimer's disease, is the subjective experience of this
disease which includes emotional, cognitive, creative, and spiritual capacities; and
has both conscious and unconscious components. I draw from Carl Jung's theory that
the unconscious dimension of the human mind has both personal and collective
components. The collective unconscious is the link between personal and
transpersonal experience. The mind, as Sacks points out, is intricately and
mysteriously interwoven with the body.
In valuing story and myth as keys to understanding the mystery of this
intricate relationship between mind and body, and in his capacity to see neurological
patients as archetypal figures, Sacks demonstrates the depth psychological method

that will be used in this work to study Alzheimer's disease. In Sacks's remarks he
recalls not only the ancient tradition of creating myths to express the inner dynamics
of human experience, he also draws from depth psychology in his use of the term
archetypal, a term used by Carl Jung and James Hillman to describe patterns inherent
in inner, psychic experience.
The shift in Western culture, from the ancients' use of myths to the modern
use of psychological concepts to express an understanding of inner experiences, has
occurred during the course of Western civilization in the effort to provide a scientific
explanation for the abstract experiences of mind. As the field of psychology evolved,
many schools developed each with unique methods of assessing and treating mental
disorders such as Alzheimer's disease. These varied schools have generated
behavioral theories which define mind more narrowly than I am defining it in this
study, focusing on conditioned behavior and maladaptive thinking, and prescribing
such treatments as structured environments to condition behavior and group therapy
to correct distorted thinking; developmental theories such as those inspired by the
work of John Bowlby and Erik Erikson which focus on the needs, stages, and tasks of
human development and prescribe treatments such as narrative therapy to help
Alzheimer's disease patients access memories of their life and identity; and
humanistic theories which focus on the autonomous, self-actualizing aspects of
mind—those aspects that hold the code for what has purpose and meaning for each
individual. Two of the treatments informed by humanistic psychology are described

in books by Bell and Troxell, The Best Friends Approach to Alzheimer's Care (2002),
and Validation Breakthrough, by Naomi Feil (1993).
The following sections include relevant literature on current assessment and
treatment of Alzheimer's disease in the field of psychology as a whole, and literature
relevant to depth psychology—my theoretical approach in this study. The section on
depth psychology is a description of the history and nature of depth psychology: key
theorists and constructs relevant to the goal of improving the treatment of
Alzheimer's disease. The literature discussed thus far reveals a lack of attention to
and understanding of the inner needs of those with Alzheimer's disease. The section
on depth psychology explains that depth psychology developed in response to the
lack of effective methods of understanding inner life and of treating mental disorders.
Current Psychological Assessment and Treatment
The discussion of methods currently used by mental health professionals to
diagnose and treat Alzheimer's disease begins with an excerpt from The Diagnostic
and Statistical Manual of Mental Disorders (1994). Known as the DSM, this manual
was first published in 1952 in response to the need of mental health clinicians for a
generally accepted classification of mental disorders (p. xvii). According to this
manual, the diagnosis Dementia of the Alzheimer }s Type, With Late Onset,
Uncomplicated is given the code number 331.0 on Axis III, a classification for
general medical conditions, as well as the code number 290.0 on Axis I, a
classification for psychiatric disorders and other conditions that may be a focus of
108
clinical attention. The following are the DSM-IV diagnostic criteria for a diagnosis of
Dementia of the Alzheimer's Disease Type:
A. The development of multiple cognitive deficits manifested by both
(1) memory impairment (impaired ability to learn new information or to
recall previously learned information)
(2) one (or more) of the following cognitive disturbances:
(a) aphasia (language disturbance)
(b) apraxia (impaired ability to carry out motor activities despite intact
motor function)
(c) agnosia (failure to recognize or identify objects despite intact
sensory function)
(d) disturbance in executive functioning (i.e., planning, organization,
sequencing, abstracting)
B. The cognitive deficits in Criteria Al and A2 each cause significant
impairment in social or occupational functioning and represent a
significant decline from a previous level of functioning.
C. The course is characterized by gradual onset and continuing cognitive
decline.
D. The cognitive deficits in Criteria Al and A2 are not due to any of the
following:
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(1) other central nervous system conditions that cause progressive deficits
in memory and cognition (e.g., cerbrovascular disease, Parkinson's,
Huntington's disease, subdural hematoma, normal-pressure
hydrocephalus, brain tumor)
(2) systemic conditions that are known to cause dementia (e.g.,
hypothyroidism, B12 or folic acid deficiency, niacin deficiency,
hypercalcemia, neurosyphilis, HIV infection)
(3) substance-induced conditions
E. The deficits do not occur exclusively during the course of a delirium.
F. The disturbance is not better accounted for by another Axis I disorder
(e.g., Major Depressive Disorder, Schizophrenia) (pp. 142-143).
These criteria include both physical and psychological symptoms, indicating a view
that includes both mental and physical aspects of this disorder. The fact that the DSM-
IVrequires that Alzheimer's disease be coded on Axis III as well as Axis I indicates
that the current psychological view understands Alzheimer's disease to be a medical
condition—a diseased brain.
In There's Still a Person in There, a guide to current treatment for
Alzheimer's disease, Castleman, Gallagher-Thompson, andNaythons (1999)
comment on current attitudes toward treatment options for Alzheimer's disease and
describe new trends in treatment which include a growing variety of psychosocial
therapies focused on the psychological aspects of this disease. These therapies include
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support groups and cognitive behavioral therapy for those in the early stage of
Alzheimer's disease, behavioral modification (rewarding positive behavior), intensive
communication programs (the Breakfast Club where a facilitator coaches participants
to greet one another and tell of their experiences with menu items like juice or
scrambled eggs), exercise (walking, rocking chairs), massage, pet therapy, music
therapy, and aromatherapy. This is a hopeful indication of a growing awareness of
and attention to the psychosocial aspects of a disease that, until recently, has been
understood and treated as a physical disorder—a physical pathology for which there
is no cure, hence a disease which, in Western cultures, causes grim despair in those
who have Alzheimer's disease and in their caregivers.
I recognize the valuable contributions made by those psychosocial therapies
just mentioned, but I think they fall short in the goal of helping us as a culture to
perceive Alzheimer's disease differently, and thus respond differently to those who
have Alzheimer's disease. I think the perspective of depth psychology offers the most
promising means of seeing Alzheimer's disease through a new lens. In the process of
surveying the plethora of information about Alzheimer's disease, I found a quotation
from Teilhard de Chardin (quoted in Kearney, 2000) that speaks to the goal of this
study:
We might say that at this moment, as in the time of Galileo, what we most
urgently need is much less new facts (there are enough and even
embarrassingly more than enough of these in every quarter) than a new way of
looking at the facts and accepting them. A new way of seeing, combined with
a new way of acting that is what we need. (p. 15)
Ill
As explained previously, I have drawn mainly from the theories of three major
figures in the field of depth psychology: Sigmund Freud, Carl Jung, and James
Hillman. The description of the depth psychological perspective draws on literary
resources to clarify the theories of Freud, Jung, and Hillman, and to clarify how these
theories contribute to the interpretation of symptoms of mental illness. The following
subjects are central in the description of each theory because of their relevance to the
interpretation of symptoms in general, and the interpretation of Alzheimer's disease
symptoms in particular: definition of the unconscious, use of myth in assessing and
treating mental illness, relationship between body and mind, and view of death. The
discussion of these subjects in each theory addresses the value of understanding
unconscious dynamics, the importance of reading symptoms as an expression of inner
experience, the value of using myths to understand the inner landscape, and the
challenge of understanding the relationship between life and death when caring for
those who are dying.
The history of depth psychology can be seen in the following descriptions of
Freud's pioneering work in developing a psychology focused on the unconscious, and
in descriptions of the extension of and departure from Freud's theories in the work of
Jung and Hillman. The literature described in the following sections describes and
clarifies the contributions of these three theorists to the goal of bridging the gap
between scientific and philosophical explorations of inner life, and the gap between
body and mind, inner and outer, life and death. The description of the evolution of
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depth psychology, from Freud's use of myth to explain psychological dynamics to
Hillman's use of myth as a method of treating mental illness, provides the theoretical
underpinning for my research into the use of depth psychology as a method for
treating Alzheimer's disease. The resources in these sections offer a definition of
terms central in this study and a clarification of my theoretical approach.
Freud's Theory audits Relevance to Treatment of Alzheimer's Disease
Definition of the unconscious. As a neurologist struggling with the limitations
of medical science in his effort to understand and treat hysterical women, Freud
turned his attention to motivations outside the conscious awareness of his patients. He
began exploring this dimension, which he called the Unconscious—a term drawn
from theories of predecessors such as Carl Gustav Cams (Ellenberger, 1970, p. 207).
He developed a theory of the structure, dynamics, and function of the unconscious in
his effort to understand and treat psychopathology. In his study of the unconscious he
became aware of the motifs of myths which appeared as meaningful themes in the
images of his patients' dreams, and understood these themes as mental
representations of instinctually derived wishes that haunt us in dreams, symptoms,
and parapraxes.
Freud had come of age during the 1870s, an era influenced by the mechanistic
materialism of Darwin, which understood cause as linear and unidirectional—the past
causes the present. Freud's theories reflect the tension he tried to hold between the
demands of mechanistic science and a medical model dominated by quantitative

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measurement and objective procedures, and experiences of the unconscious that are
impossible to quantify or observe objectively. Henri Ellenberger (1970) makes the
following observation:
The coexistence of two mutually incompatible approaches to the cognition of

the human psyche shocks the scientist's yearning for unity. Shall we keep the
principle of unity of science by sacrificing the autonomy of the new dynamic
systems or keep these systems (and possibly further ones that will arise in
their wake) and consider the ideal of unified science as a noble dream. A way
out of the dilemma could be provided by the combined effort of psychologists
and philosophers. In our survey of the exploration of the unconscious, we
noticed that psychologists have been mainly interested in its conservative,
dissolutive, and creative aspects, whereas little attention was devoted after
Flournoy to the mythopoetic unconscious, (pp. 896-897)
In Freud's exploration of the unconscious, he struck a tenuous balance
between these two mutually incompatible approaches. To ensure credibility for his
theories, he emphasized the importance of objectivity in observing manifestations of
the unconscious. Yet, at the same time that he conformed in his theories to the
scientific insistence on objective knowledge, he allowed the wisdom of the ancient
roots of depth psychology—Greek myth—to seep into his theories. This wisdom is
based not in rational, scientific knowledge, but in intuitive knowledge that recognizes
the influential presence of recurring patterns in human behavior.
Freud observed the universal nature of the mythic themes in his patients'
dreams and symptoms, and also observed that these motifs are outside our conscious
awareness, not directly represented in our conscious mind. According to Freud's
theories, we surmise the existence of these motifs from the effects of their presence.
This is akin to knowing about the invisible dynamics of the wind because we see its
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effects in rustling leaves. The universal appeal of myths and the manner in which
their themes have the power to fascinate and reverberate with something in our
personal experience is the equivalent of the rustling leaves. We experience the
recurring patterns of ancient myths in our dreams, thoughts, feelings, behavior,
relationships, symptoms, and in cultural phenomena. The following example suggests
the relevance of Freud's theories in this study of Alzheimer's disease. During my
mother's decline, I often referred to time spent with her as time spent in the
underworld. The themes in myths about the underworld, particularly the myth of
Persephone's abduction to the underworld, reverberate with my experience of my
mother's being taken against her will from a relationship with the human world
during her progression through the stages of Alzheimer's disease.
Relationship between body and mind. In an essay exploring Freud's
understanding of the unconscious motivation for physical symptoms, Christine
Downing (2000) describes Freud's practice of seeing through symptoms to the
underlying dynamics which hold the meaning of the symptom. In the following
comment she sheds light on Freud's view of the relationship between unconscious
dynamics of mind (referred to by Downing as psyche and soul) and the physical
body:
He . . . discovered (in his work with women suffering from hysteria) that the
soul speaks through the body, and that psyche uses the language of the body
to express itself. He learned to hear somatic symptoms as language, not as
gibberish but as expressions of an otherwise silenced soul; he learned to read
symptoms as symbols, (p. 63)
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Downing speaks very succinctly about Freud's view of the relationship between body
and mind: "For Freud drive is the meeting-place of body and soul" (p. 64). His view
that somatic symptoms are language not gibberish—the soul expressing itself through
the body-is a major contribution to the theories of depth psychology and to an
understanding of Alzheimer's disease. This view encourages caretakers to look at
Alzheimer's disease symptoms, for example the symptom of wandering, as a
metaphor—possibly an indication—of the soul looking for home in the more
profound sense of home: death.
In her discussion of Freud's definition of body and soul, Downing (2000)
clarifies Freud's use of the German word Seele. She explains that Freud's use of
Seele, which is translated in English as mind, means essence of self, or soul, a
meaning similar to the meaning of psyche in Greek mythology:
Freud's Seele is psyche, not pneuma, not the transcending spirit but the
embodied soul.. . . Not that aspect of us which is literally immortal, but what
enlivens us while we are alive. The soul is the breath of life. It enters at birth,
leaves at death. It connects us to world, each time we breathe in or out, and
enables us to be speaking beings. Soul is in a sense a metaphor, a myth. It has
no physical correlate. . . . It dwells in the body but can't be located
anatomically, (p. 61)
The English translation of Seele lost the larger, psychological meaning of
mind. Translating Seele into the English mind, implied that Freud's definition of mind
was the same as the Western, medical definition for this word: cognitive function.
Downing points out that through nuances in language and through the use of myth,
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Freud expressed his understanding of mind as a dimension larger and more complex
than just cognitive function.
Use of myth. Downing (2000) offers the following insight into Freud's use of
myth as a way to explain unconscious dynamics:
His father's death seems to have functioned like a "shamanic wound." Until
then for Freud the unconscious was something that others had, an important
force in the life of his hysterical patients but not really in the psyches of
normal persons like himself. . . . For Freud "Oedipus" was not an illustration
or clever designation for an insight which might have been articulated
otherwise but a medium of discovery, (p. 66)
Downing elaborates on how the rich meaning of the Oedipus myth—Oedipus as a
young man and Oedipus at Colonus—unfolded throughout Freud's life as a means of
self-discovery—a way to understand his own psyche. She explores the impact of his
father's death and his own approaching death on his theories regarding death, and
asserts that Freud recognized not only the psychological importance of Eros and
Death, but saw them as the two central forces at work in the universe: "He looks upon
Eros and Death as two primal powers, as cosmological not just psychological
energies, forces that are at work in us, through us, and in the whole outer world" (p.
70).
According to Downing, the mythic figures in Freud's theories are metaphors
with subjective and universal significance. He drew insights from the Greek myth
about Oedipus and demonstrated that the dynamics in this myth are eternally present
in human experience. Hence, Freud's work treats myth and dreams as profoundly
relevant to any science of human experience.

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View of death. In her discussion of Freud's theories about death, Downing
(2000) addresses one of the concerns of this paper, the repression of death in Western
culture:
In this later period he comes to emphasize the importance of overcoming the

repression and literalization of death. . . . Death as Freud speaks of it, is of
course psychical and not simply biological reality. . . . The goal of all life is
death, he tells us. . . . Death is something we both long for and fear. He
associates death fear with our fears of: the unknown, the uncanny, the
unconscious; with our fears of vulnerability and passivity; our fears of not
being loved, of being abandoned, of not loving. Death wish is associated with
all in us that is pulled toward repetition, inertia, regression; all that longs for a
tension-free existence, for Nirvana resolution, completion . . . death is not the
enemy. The death drive is not bad; it represents a given direction of the soul.
(p. 71)
These comments on Freud's view of death offer profound insights into the
experience of Alzheimer's disease. They speak to the subjective experience of losing
connection with the human world and to the sense of vulnerability and fear—of the
unknown, of being abandoned and unloved—generated by moving into a dimension
of reality where there is no cognitive guide. This movement of soul from life to death
is ongoing and multidimensional and something, according to Freud, we both long for
and fear. We can only imagine about the inner experience of Alzheimer's disease,
particularly in the late stage. Is there a yearning for completion as well as fear and
despair? According to Downing, Freud used myths to address the psychological and
universal significance of Eros and Death, not as a clever designation but as a medium
of discovery. This speaks to a goal of this study: to use myths as a medium of
discovery in the effort to understand and treat those with Alzheimer's disease.
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Jung's Theory and Its Relevance to Treatment of Alzheimer's Disease
Definition of the unconscious. Carl Jung followed Ellenberger's suggestion in
the dilemma of negotiating between science and philosophy, between scientific
explanations of mind, and explanations of new, dynamic systems: Jung focused on
the mythopoetic function of the unconscious. Jung differed from Freud in that he
understood inner life to be determined less by mechanical principles of science than
by the autonomous dynamics of the unconscious. The difference between Freud and
Jung can be seen in their attitudes toward myths. Freud used myths to allude to the
dimension of psychological experience that eludes scientific explanation. He refused
to consider the spiritual dimension as a crucial component of human experience and
to give it status in his topography of the unconscious. In contrast, Jung studied myths
as manifestations of universal patterns in the unconscious, and saw them as the
interface between the scientific and spiritual views of the human mind. Instead of
excluding the spiritual dimension of the mind from the science of the unconscious,
Jung focused on it as the meeting point between the physical and transcendent. His
theories explore the spiritual dimension of human experience and the autonomous,
metaphoric, mythmaking function of the unconscious.
In his study of the mind, Jung considered dream images to be the objective
data of the unconscious, and he sought an understanding of inner life by exploring the
symbolic significance of these images. He discussed two levels of symbolic meaning
in dream images. One level represents personal meaning and corresponds to Freud's
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theory, that a dream image has an instinctual basis. The other level represents
universal meaning, according to Jung, and is guided by transcendent goals of
humanity. In an elucidation of Jung's theories, Hall and Nordley (1973) describe
Jung's thinking about the symbolic meaning of dream images:
Retrospective analysis exposes the instinctual basis of a symbol, and

prospective analysis reveals the yearnings of mankind for completion, rebirth,
harmony, purification. . . . The former is a causal, reductive type of analysis;
the latter a teleological, finalistic type of analysis. . . . Jung believed that the
prospective character of a symbol has been neglected in favor of the view that
a symbol is solely the product of instinctual impulses and wishes striving to
assert themselves, (p.l 17)
In his work with dreams, Jung studied the metaphoric language of the
unconscious and discovered images and themes of myths that were often unfamiliar
to the dreamer. He concluded that the dreamer was drawing from universal patterns
inherent in a deep, collective level of the human unconscious. To accommodate these
observations, Jung expanded the scope of Freud's definition of the unconscious to
include not only the personal unconscious, but also a collective unconscious—a
chthonic level of the unconscious composed of archetypes as well as instincts. The
collective unconscious, in Jung's theories, is the connecting link between personal
and transpersonal, instinctual and spiritual.
Jung's definition of the collective unconscious and his theory of archetypes
extended Freud's ideas about the instinctual basis of the universality of symbols in
dreams and myths. Jung used the term archetype to name the organizing structures of
the unconscious process that motivate dream images and symptoms of illness. He
observed that archetypes operate outside the awareness of the conscious mind, and
explained that archetypal themes manifest in the conscious mind by informing both
the instinctual and imaginal aspects of images and symptoms. Archetypes can only be
identified by their manifestation, in a manner described in my earlier metaphor about
the presence of wind being inferred from rustling leaves.
According to Jung, an archetypal pattern is constellated by a stimulus—an
individual's experience of his inner or outer world. The stimulus sets in motion an
unconscious process that uses ideational contents of consciousness, and is fueled by
irrational, affective reactions and impulses which organize the contents around an
archetypal theme (Jacobi, 1957/1959, p. 68). The constellated archetypal pattern
operates like a magnetic field in the way it organizes ideational contents into a
specific pattern, and it then enters the conscious mind as a motif embedded in an
image or idea, or it is expressed in behavioral symptoms. Jung's aim was to
"understand the hidden intentions of the organizer," no matter how seemingly
inconsequential (Jaffe, 1984, pp. 102-103).
The next sections explain how Jung's theory of archetypes as organizers of
images and symptoms opens the door to a consideration of the transpersonal,
spiritual, dimension, and changes the nature of interpretive goals. Jung's goal in
interpretation was, as Hall and Nordley explained, to understand the prospective
yearnings as well as the instinctual wishes expressed in images and symptoms. This
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inclusion of prospective yearnings holds the potential for changing the way we assess
and respond to the symptoms of Alzheimer's disease.
Use of myth. In his effort to understand the hidden organizer, Jung developed
methods for interpreting dream images. He approached a dream as a philologist
approaches an undeciphered text. His first goal was to establish a context by
exploring the dreamer's associations to the images of the dream. He sought to
understand both the personal level of meaning in dreams and the archetypal meaning
rooted in the collective level of the unconscious. In the following example Jung
describes the way he begins his work with a dream:
When somebody dreams of a deal table, it is not enough for him to associate it
with his writing-desk which does not happen to be made of deal. Supposing
that nothing more occurs to the dreamer, this blocking has an objective
meaning for it indicates that a particular darkness reigns in the immediate
neighborhood of the dream-image, and that is suspicious. We would expect
him to have dozens of associations to a deal table, and the fact that there is
apparently nothing is itself significant. In such cases I keep on returning to the
image, and I usually say to my patient, "Suppose I had no idea what the words
deal table mean. Describe this object and give me its history in such a way
that I cannot fail to understand what sort of thing it is." In this way we manage
to establish almost the whole context of the dream-image. When we have
done this for all the images in the dream we are ready for the venture of
interpretation, (in Fordham, 1966, p. 98)
In his effort to understand the archetypal meaning of a dream image, Jung
used his knowledge of myths and the method of amplification. He believed that an
image or a dream is sometimes:
So strange and uncanny that it does not seem to belong to the dreamer. It is
like a visitation from another world, which in truth it is, the other world being
the subterranean one of the unconscious. In ancient times, and even today
among some people, such dreams are regarded as messages from the gods or
ancestral figures. (Hall & Nordley, 1973, p. 118)
Jungian scholar Marie-Louise Von Franz (1988) offers the following description of
the use of amplification to understand the meaning of dream images:
One gathers together motifs as analogous as possible, first from other areas,
until it becomes apparent that these different motifs are like different facets of
the same basic theme. The amplifications are then placed in sequence in the
narrative, which itself provides a certain selection of the amplifying images.
(p. 131)
Von Franz gives the example of a dream image of a fox who is helpful and explains
that positive rather than negative amplifications of the nature of a fox would be
emphasized in the interpretation of this dream. Von Franz explains further that
sometimes the dreamer has no meaningful associations and can find no

relationship to the dream situation; it is here that mythological parallels can be
helpful. These will usually throw new light on the collective meaning of the
dream, and its relevance to the dreamer can then be worked out. (p. 131)
In a discussion of dream interpretation Jung (1968) describes his use of
amplification to interpret the collective meaning of the image of a crab-lizard that
appeared in a patient's dream: "I can associate for him. I can even provide him with
the necessary context because he will have none, he does not know where that crab-
lizard comes from and has no idea what it means, but I know and can provide the
material for him" (p. 101). Jung drew from his knowledge of what this mythic image
has meant to people in other times and in many cultures as a way of discerning the
archetypal root of this contemporary dream image. He provided different mythic
versions of the motif of crab-lizard, in order to amplify, or enrich, the meaning for
this particular dreamer.

In an essay which appeared in Jung's Man and His Symbols (1964), Jungian
analyst Joseph Henderson explains the relevance of myths in the interpretation of
dreams of modern patients:
For the analogies between ancient myths and the stories that appear in the
dreams of modern patients are neither trivial nor accidental. They exist
because the unconscious mind of modern man preserves the symbol-making
capacity that once found expression in the beliefs and rituals of the primitive.
And that capacity still plays a role of vital psychic importance. In more ways
than we realize, we are dependent on the messages that are carried by such
symbols, and both our attitudes and behavior are profoundly influenced by
them. (p. 107)
Henderson observes that in wartime, there is an increased interest in works
about war by such authors as Homer and Tolstoy, because even though the battles of
the Trojan War were very different from the battles of World War II, these great
writers transcend the differences by their use of symbols in the expression of
universal themes that reverberate with the collective level of the human unconscious.
Von Franz (1988) adds to this explanation of the relationship between myths and
dreams by commenting that
interpretation has no goal beyond that of reconnecting consciousness with the

source of energy which is the archetype. It appears to be the purpose of the
myth, as is the case with the dream, to keep alive in our memory our
psychological prehistory, right down to the most primitive instincts, and the
assimilation of the meaning of myths has the effect of broadening and
modifying consciousness in such a way as to bring about a heightened
aliveness. (p. 131)
This goal of broadening and modifying consciousness speaks to my goal of
broadening and modifying the conscious attitude of caregivers toward those who have
Alzheimer's disease. I hope to expand the view of Alzheimer's disease to include

images of the inner landscape of the human mind as expressed in mythic portrayals of
the underworld. Drawing on knowledge of the myths of nekyia (descent to the
underworld), I will make use of Jung's method of amplification to enrich the
understanding of the symptoms of Alzheimer's disease. One benefit of exploring
mythic themes expressed in symptoms as a way of assessing and treating these
symptoms is that it engages caregivers in a meaningful story that is unfolding,
encouraging them to attune to the symptoms rather than to rotely manage them.
Relationship between body and mind. Jung agreed with Freud that somatic
symptoms are an enactment of inner dynamics and, as physicians, both focused on the
relationship between body and mind. I use the term mind here to refer to the
psychological definition of mind—the totality of conscious and unconscious mental
processes. According to Downing, in Freud's theory drive is the meeting place of
body and mind. In Jung's theory, the archetype is the function which informs and
links physiological instincts and mental images. He believed the nature of both
psychological images and physical, instinctual perceptions derived from a distinct
realm beyond space and time which he named the psychoid. The psychoidrealm is
the source of the archetypes—the spiritual, or transpersonal, realm of the gods—a
realm from which immortal, universal forces such as death and love—Thanatos and
Eros—intrude into human life.
In his collaboration with physicist Wolfgang Pauli, Jung found validation in
modern physics for his theory of archetypes. He began to see the physicist's
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investigation of matter and the psychologist's investigation of mind as two different
ways of approaching the same dimension outside space and time. Jung explains this
dimension as "the common background of microphysics and depth psychology . . . a
neutral nature which can at most be grasped in hints since in essence it is
transcendental" (Storrs, 1983, p. 335).
Jung's theory of the psychoid as a transcendental realm outside, or underlying,
space and time, from which matter and mind become differentiated, suggests a unity
of existence similar to the Sufi tripartite universe—a cosmos where all of creation
exists simultaneously in three dimensions: in the spiritual realm as essence, in the
imaginal or psychological realm as image or idea, and in the physical realm as matter.
These views of the structure of the universe provide a way of seeing the Alzheimer's
disease experience in three dimensions. For example, the physical behavior of
agitation can be seen as the outer, physical manifestation of a psychological dynamic;
this psychological dynamic, or pattern, has been expressed in the mythic motif of
Persephone struggling with Hades. This particular motif is the imaginal manifestation
of the human encounter with the spiritual dimension—with a universal, transporting
force—death.
John Conger, in Jung and Reich: The Body as Shadow (1988), provides
further insights into Jung's theories about the relationship between body and mind,
and about interpretation of symptoms. He points out that in Jung's view the body is,
or can become, the repository of what we experience psychologically as unacceptable

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in ourselves, unspeakable or fearful. The body holds the energy of what is denied and
repressed. Body language, as a reflection of unacknowledged, bound energy, provides
clues for understanding the anxiety and despair acted out by the agitated, wandering
bodies of those who have Alzheimer's disease and are yearning for release or
completion—trying to find a way home in a culture that sees them as mentally
disordered and tragic—beyond hope.
View of death. The central fear the physical body presents to the executive
function of the mind, the ego, is the fact that, as a body, it will die, and with the
body's death the ego will cease to exist. The ego's relationship to the body and to the
unconscious requires a relationship with both the physical and psychological reality
of death. The ego relates to the physical reality of death through experiences such as
the death of others and through illness—signals of the mortality of the flesh. The ego
relates to the psychological reality of death, according to Jung, through experiences of
the unconscious. These experiences involve loss of the ego's control, and a shift from
a literal, rational mode to an associative, metaphoric mode. This shift happens in the
ordinary experiences of dreams, memories accessed through a familiar sight or sound,
and in nonordinary experiences such as the hallucinations of the mentally ill and the
visions of mystics. The moment when the ego loses, or sets aside, rational control and
becomes aware of the unconscious mode taking control of the mind seems aptly
portrayed in Lewis Carroll's Alice in Wonderland as falling through a hole into
Wonderland where things do not make sense.

Jung speaks of this loss of control as a death experience for the ego. He
describes the psychological experience of death as a giving way to unlimited space,
nothingness, and then awareness of a new mode:
The transcendence or death of the ego heralds a "new state" of being in which
(quoting the Zen master Suzuki) the "old ways of seeing things is abandoned".
. . . "It is not that something different is seen," Jung explained, "but that one
sees differently." (in Welman, 2000, p. 132)
Jung's comment that death of old ways of seeing allows space for new ways
of seeing speaks to the goal of this study, and it relates to the actual experiences of
Alzheimer's disease—death of the cognitive function which results in new ways of
experiencing reality. The descriptions of those in first-stage Alzheimer's disease
contain references to new ways of experiencing nature as a result of deteriorating
cognitive capacity, and Iris Murdoch's description of her experience of Alzheimer's
disease as "sailing into darkness" offers an example of a shift from the logical mode
of the rational mind to the imaginal mode of the unconscious. The significance of the
imaginal mode of the unconscious becomes a central focus in the theories of James
Hillman.
Hillman 's Theory and Its Relevance to Treatment of Alzheimer's Disease
Definition of the unconscious. James Hillman (1975) was influenced by
Jung's theory that the organizing function of the archetype occurs at the deepest level
of the mind. But Hillman focused less on the science of the archetype, and more on
the function of the archetype as the imaginal dimension of the human mind—the
metaphoric, mythopoetic mode. He explains that his psychology is one that starts
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"neither in the physiology of the brain, the structure of language, the organization of
society nor the analysis of behavior, but in the processes of imagination" (p. xvii). He
locates the processes of imagination in the unconscious dimension of the mind, and
defines the unconscious as both a place, or dimension, and a process.
In defining the unconscious as a place, Hillman (1979) draws from Freud's
topographical view of the unconscious as a region of the inner landscape below
consciousness: "Freud begins to write interior geography and to make a voyage in the
imaginal. Through the dream, he rediscovers the underworld" (p. 16). Likening the
unconscious to dreams, Hillman explains that it is not only an image or place we go
into when asleep, but also a process that originates outside the control of the
conscious mind and is a motivating force that produces mental images and physical
symptoms.
Hillman (1979) points out the resemblance between the unconscious region
described by Freud and the underworld described in ancient myths. He explains that
"the underworld is a realm of only psyche . .. underworld is the mythological style of
describing a psychological cosmos. . . . Put more bluntly: underworld is psyche" (p.
46). According to Hillman (1975) the psychological cosmos, which he calls psyche, is
an invisible, animating energy, or dynamic force, that motivates the outer world and,
as soul—the enlivening component of physical bodies—it motivates people's
behavior, sensibility, and feeling states. Mythic stories such as Odysseus' encounter
with the shade of his mother in the underworld depict the dynamics of this imaginal,
psychological cosmos—the unconscious.
In Hillman's theory the terms unconscious, psyche, soul, and underworld axe
used interchangeably to refer to the unconscious as both a dimension and an
animating process. The function of the psyche, or underworld, as the motivating force
of the outer world, is synonymous with the function of soul as motivating force of the
physical body. According to Hillman (1975), we experience the process of soul as
"the imaginative possibility in our natures, the experiencing through reflective
speculation, dream, image, and fantasy" (p. xvi). To again compare invisible,
psychological dynamics to invisible, physical dynamics, according to Hillman we
experience the invisible presence of psyche (our soul) stirring in dreams, fantasies,
and behavior, just as we experience the invisible presence of the wind stirring in
leaves.
Relationship between body and mind. In Hillman's (1975) theory, body/mind
becomes body/soul/spirit. He clarifies his view of the relationship between body and
mind by describing soul as the third position or connecting link between body and
spirit in a tripartite personality: body/soul/spirit (p. 174). His tripartite personality,
like Jung's view of the structure of the universe, resembles the Sufi tripartite
universe, where the soul is the imaginal dimension. As the link between collective
spirit and personal body, the soul derives from the spiritual dimension—is informed
by universal, archetypal forms, and motivates particular mental images and physical
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behavior. Hillman emphasizes that the focus on soul (unconscious process) in depth
psychology differentiates it from other schools of psychology. In Hillman's view the
goal of human life is not to manipulate or discipline the soul in the service of life's
agendas, but to use human life—the capacities of the human being—to discern and
care for the needs of the soul.
Hillman (1991) also describes the relationship between soul and spirit—the
psychological and spiritual dimensions of inner life. In "Peaks and Vales" he defines
the spiritual dimension as transcendent, abstract, unified, concentrated and humble in
contrast to soul (the imaginal dimension) which is concrete, particular, multiple,
humorful and immanent. He maintains that the spirit seeks God by transcending to
mountain peaks and soul seeks the Gods closer to hand—in the vales of human
experience (p. 72). Hillman asserts that the spiritual search for meaning must be
grounded in an "exploration of soul by spirit. . . . The messianic, transcending
movement connects first with soul and is concerned first with its movement: 'not
what does this mean?'—the question asked of spirit by spirit—but 'what does this
move in my soul?' " (p. 69). His emphasis on the importance of connecting with soul
in a search for meaning is a crucial point in my search for meaning in the experience
of Alzheimer's disease. Discerning the meaning of this disease required immersion in
the actual experience to understand what moved my soul.
Use of myth. Like Freud and Jung, Hillman (1979) believes that the gestural
body and symptoms of mental illness are motivated by unconscious dynamics but,
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unlike Freud and Jung, who used concepts like unconscious and complex, Hillman
uses myths to explain symptoms, maintaining that a fundamental tenet of archetypal
psychology is the interchangeability of mythology and psychology. He (1975)
defends his departure from the use of scientific concepts to describe mental illness by
arguing that the pattern in an archetypal image, narrative, or symptom cannot be
reduced to a concept without losing the integrity and richness of its complexity:
We sin against the imagination whenever we ask an image for its meaning,
requiring that image be translated into concepts. The coiled snake in the
corner cannot be translated into my fear, my sexuality, or my mother complex
without killing the snake, (p. 39)
In clarifying his use of myth to assess and personify (characterize, or
diagnose) the unconscious dynamics of mental illness, Hillman (1975) asserts that the
most valuable answer to the question, "What's causing the symptoms?" is a
metaphorical rather than a literal or logical answer. The value of personifying the
symptoms of mental disease is to
restore to the disease its God and give the god its due. . . . The hallucinated
animisms of insanity may now be seen as attempts at reconstructing, in
Unamuno's sense, a loving and pitying cosmos, attempts at reestablishing a
feeling connection with the immutable personifications who govern all life,
always, (pp. 34-35)
These immutable personifications who govern all life are the gods of the ancient
Greek cosmos and the archetypes in Jung's theories. Hillman defined the gods (the
universal forces) as more than constitutional propensities and instinctual patterns of
behavior, more than ordering structures of the psyche:
They become now recognizable, each with styles of consciousness.... As

persons they do not differ from the Gods, heroes, and daemons; only as
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concepts in the abstractions of a science can we distinguish them from the

figures of myth and cult. (pp. 35-36)
Hillman (1991) drew from Greek mythology, the rich reservoir of Western
civilization, and used familiar Greek gods and myths to personify archetypal patterns,
or styles of consciousness. He explains that the gods are within us—within our acts,
thoughts, and feelings, commenting:
We do not have to trek across the starry spaces, the brain of heaven, or blast
them loose from concealment with mind-blowing chemicals. They are there in
the very ways you feel and think and experience your moods and symptoms.
Here is Apollo, right here, making us distant and wanting to form artful, clear,
and distinct ideas, (p. 72)
Hillman follows Freud and Jung in focusing on unconscious dynamics, but he
extends Freud's use of myth as allusion—a literary technique, and Jung's use of myth
as amplification. Hillman uses mythic figures to personify psychological reality as a
viable presence in life. Using Hillman's method to personify the power motivating
my mother's agitated wandering in the middle of the night, I see Hades seizing her
and removing her to the land of the shades. This view of the Alzheimer's experience
opens the door into a dynamic story with existential significance, as a counterpoint to
a rational description of cognitive impairment.

View of death. Hillman (1979) personifies the ego's experience of the
unconscious and death as a shift to, or awareness of, Hades—"a hidden presence—
even an invisible fullness" (p. 28). As a painter adds colors to achieve a desired hue,
Hillman adds images to enrich his personification of Hades as a dark void, a
repository of the feared and forbidden, and he emphasizes that Hades is a viable
presence now, "The House of Hades is a psychological realm now. . . . It is not a far-
off place of judgment over our actions but provides that place of judging now, and
within, the inhibiting reflection interior to our actions" (p. 30). He draws from Greek
myth to enhance this depiction of the underworld as a place where one meets soul, as
Odysseus met the bodiless shades of Ajax, his mother Anticleia, and Agamemnon.
Hillman compares the movement of shades in the underworld to the way figures
move in dreams (p. 46). The shades, or images, one meets in an experience of the
unconscious—the underworld—have psychological meaning but no physical
substance. Odysseus was moved psychologically by his encounter with his mother,
but his attempt to hug her was futile. The underworld as a psychological reality is
intangible, invisible—unconscious—yet it informs and motivates the visible.
Hillman (1979) stresses the value of the psychological experience of death,
and comments that as Western culture focuses on the physical body, not the subtle
one, and on physical life, not psychic life, it also focuses on the literal and not the
psychological aspects of death. He contrasts this with many ancient cultures that had
ancestor cults and myths of nekyia (descent to the underworld). Hillman argues that
depth psychology is "where today we find the initiatory mystery, the long journey of
psychic learning, ancestor worship, the encounter with demons and shadows, the
sufferings of Hell" (p. 65). In describing depth psychology as a nekyia, Hillman
(1979) observes:
Since its inception with Freud, depth psychology has been a "movement,"
driven by a mission. Some of that mission has been the Resurrection of the
Dead, the recall to life of so much forgotten and buried in each of us. It did
not go far enough, however. It believed that lifting personal or cultural
repression of the instinctual id was its end. It opened the tomb, imagining that
a mummified body would rise up; but the id as the underworld is not the
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instinctual body. It is the chthonic psyche. . . . Our footfalls echo on its vaults
below. There is an unconscious reverberation, like the thin thread of the dream
that we awaken with in our hands each morning leading back and down into
the images of the dark. (pp. 66-67)
Hillman (1979) compares psychoanalysis to ancient initiation rituals—
initiation into the mystery of the underworld—during which the initiate encountered
demons, shadows, and suffering. He explains that a person who goes into analysis
embarks on a nekyia, and is properly called a patient—not analysand or client,
because this word accurately conveys the experience:
The actual condition of going into the depths of soul. . . . The underworld
experience turns us each into patients, as well as giving us a new feeling of
patience . . . soul is found in the reception of its suffering, in attendance upon
it, the waiting it through, (p. 65)
The encounter with the unconscious involves an encounter with the suffering
of the soul. This description of descent to the underworld resembles the experience in
an Alzheimer's facility where there is the suffering of the residents and the attendance
upon this suffering—both requiring patience and descent into the void. Hillman's
vivid portrait of the descent into the underworld as a shift to a nonliteral, nonlinear,
nonrational experience provides a valuable frame of reference for studying these
aspects of the experience of Alzheimer's disease. The underworld is an image in your
mind—a story to go into—where the Alzheimer's disease experience fits.
Alzheimer's disease does not fit in the temples of Zeus or Apollo, but it does fit in the
dark region underlying these temples. The underworld view is a counterpoint to the
rational view of this experience. In an examination of diminished cognitive function,

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the rational view looks at what is missing, the underworld view looks at the void to
see what images occur when the rational mind is not ruling.
In drawing a comparison between the psychological descent into the
unconscious and the initiations of the ancient mystery traditions, Hillman (1979)
focuses his discussion on the ancient Greek Eleusinian initiation ritual. This initiation
is based on the myth of Persephone's abduction into the underworld by Hades, her
mother Demeter's frantic search for her, and the negotiations that allowed Persephone
to return to her mother. Hillman observes that, as with Zeus and Hades, Persephone
and Demeter can be understood as two styles of consciousness or perspectives—one
who sees the universe from above and the other who sees from below (pp. 30, 37).
In the following description, a collage of theory and image, logic and myth, Hillman
(1979) articulates the mystery of the separate yet interwoven nature of the
relationship between conscious and unconscious mind, between life and death, and
between the immanent experience of the Eleusinian Mystery and the transcendent
dimension of this mystery. He uses common feeling states to describe how the
Eleusinian myth operates in contemporary life:
The archetypal psychology of the Hades-Persephone-Demeter triangle did not

cease in Greece. Aspects of the psychological mystery of Eleusis still take
place in the soul today. The Persephone experience occurs to us each in
sudden depressions, when we feel ourselves caught in hatefulness, cold,
numbed, and drawn downward out of life by a force we cannot see, against
which we would flee, distractedly thrashing about for naturalistic explanations
and comforts for what is happening so darkly. We feel invaded from below,
assaulted, and we think of death, (p. 49)
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Hillman (1975) emphasizes the necessity of the shift in the initiation process
from the ego or upperworld perspective which struggles against the darkness of the
void, to the giving way Jung described, a giving way to the imaginal mode of the
unconscious—to the value and meaning in the darkness. Hillman expresses this as a
shift from the view of human concerns to seeing through Persephone's darker eye,
and offers the following explanation of the significance of this shift:
It is as if we must go through a death experience in order to let go of our

clutch on life and on the viewpoints of the human world. . . . invisible forces
of the unconscious underworld overpower and make captive our normalcy. . . .
Only then are we able to discriminate psyche from human, experiencing in the
belly of our intimate being that the psyche has connections far removed from
human concerns. Then we see human concerns differently, psychologically.
The rape of Persephone does not happen just once in a life. Because
this radical change in soul is a mythical occurrence, it is always going on as a
basic pattern of psychodynamics. Because this particular myth is central to
the main Greek mystery cult of psychological transformation, that of Eleusis,
Hades' rape of the innocent soul is a central necessity for psychic change.
We experience its shock and its joy whenever an event is taken suddenly out
of human life and its natural state and into a deeper and more imaginally
"unreal" reality, (p. 208)
Hillman's discussion of the significance of the myth of Persephone provides a rich
interpretive resource in this study of the inner experience of those with Alzheimer's
disease.
In his book Mortally Wounded (1997), a description of caring for the dying,
physician Michael Kearney refers to Hillman as his mentor in ways of the soul (p. 60)
and, like Hillman, he speaks about the similarity between the dying process and the
mythic descent to the underworld. Kearney discusses the relevance of the Eleusinian
Mysteries for contemporary culture, and for caregivers. He describes the descent to
the underworld in psychological terms, explaining it as a crossing of the threshold

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"from normal consciousness to a deeper, more intuitive, and image-laden level of
mind" (p. 178). He cautions that the descent into the depths happens often, but we
only become initiated into the mystery of the Eleusinian ritual—death and rebirth—
when we develop the proper relationship with depth—a relationship characterized by
trust and humility. Kearney's discussion points out similarities between an inner
journey and the initiation rites of tribal cultures noting that threshold crossings are
guided by tribal elders who, having been initiated themselves, facilitate an inner
transition from surface to the deep levels of the initiate's experience (p. 145).
In the foreword to the new edition of Mircea Eliade's study, Rites and
Symbols of Initiation (1995), Michael Meade offers additional insights into Kearney's
discussion of the psychological meaning of the descent at the core of initiation rites.
Meade explains that "the most important reason to study rites of passage may be to
see in the events erupting in the streets and at the borders and crossroads of our post-
historic era the archaic energies of life renewing itself (p. xx). This approach to
understanding contemporary events by studying past rituals of initiation and mythic
modes of descent follows closely the depth psychological view advocated by
Hillman. Meade points out that "without a ritual to contain and inform the wounds of
life, pain and suffering increase, yet meaningful change doesn't occur" (p. xxi). He
describes what happens when there are no rituals in a culture:
Descents and ordeals occur randomly, without a ritual surrounding, without

the benefit of the love and instruction necessary to guide a person toward the
chance of a second birth. When the inner purpose and spirit of a person do not
get revealed, re-valued and acknowledged by an appropriate community,
people increasingly feel like victims and act like outcasts, (pp. xxii-xxiii)
Meade's mention of the borders and crossroads of life for which ancient peoples had
rites of passage, has meaning for the aging and dying process at the border between
life and death. Meade's words certainly apply to those with Alzheimer's disease who
are moving through a passage toward death, often without understanding and love
and with no acknowledgement of their inner purpose and spirit—their value to the
community. According to the stories of those in the early stage of Alzheimer's
disease, they often feel like victims and outcasts.
Kearney and Meade both stress the value and relevance of the wisdom found
in archaic myths and initiation rites for contemporary descents to the inner depths.
Michael Kearney focuses on the specifics of how this ancient wisdom is valuable in
his work. He uses the term soul pain to describe the suffering he encounters in dying
patients who are cut off from the deepest part of themselves, and describes his use of
depth psychological methods to address soul pain.
As a physician, Kearney integrated the methods of depth psychology into his
practice of healing. In contrast, Arnold Mindell is a Jungian analyst who has
integrated body work into his practice as healer. By attending to and using body as a
way of communicating, Mindell and his wife, Amy, developed techniques for
communicating with people who are in comas.
In a foreword to Amy Mindell's (1999) guide to caregiving for coma victims,
Arnold Mindell offers the following explanation of his work:
Coma work is based on the philosophy that the human being in a coma is on
an inner journey, dealing with that coma in the best way that nature knows
how. Therefore our entire effort is devoted to meeting individuals where they
are, in the deepest, almost unfathomable altered state of consciousness. In
other words, instead of arresting the coma state, we encourage and join the
comatose person in exploring that journey. In this way, the comatose person
has a chance of feeling related to. Empathy with that state results in a
heightened communication potential and, occasionally, awesome insights and
contacts, (p. 11)
Amy Mindell adds to this explanation of the philosophy of Arnold Mindell's work,
specific possibilities that are addressed in coma work:
People are full of potential growth in all states of consciousness—even up to

and perhaps beyond the moment of death. Some people in coma may be
unconsciously searching for the chance to go deeply inside without the
disturbances of, or having to relate to, everyday life. In coma work we assume
that if the heart is still beating, we should make the attempt to communicate
and not rule out the possibility of reaching these little-known corners of life
. . . . Coma work makes it possible for individuals in coma to communicate
with a helper if they like, and to have a voice in decisions about their care. (p.
27-28)
Amy Mindell explains the importance of realizing that it is possible to communicate
with people in altered states like comas, and the necessity of developing effective
communication techniques:
Coma work requires an ability to expand our normal ways of communicating

because the comatose person cannot talk to us in an ordinary manner. It
requires that we learn to relate to the person's altered state. If we adjust our
communication style to the comatose person's world, we have always been
able—in some form—to reach the person in coma. The most sensitive people
seem to do this kind of communication naturally. Even if you do not know
many skills, a comatose person responds well to loving attention in which you
try to join in and adapt your communication style to the altered states of the
comatose person, (p. 29)
Mindell teaches many exercises that facilitate communication with coma victims.
These exercises include techniques like joining through breathing, humming, and
touch—as a means of establishing a relationship with the patient. Mindell tells of her
own experience in a workshop on deep bodywork:
Special hands-on bodywork methods made it possible to access experiences

that helped me remember my whole self. I recall one exercise we did on
trance states. My helper lifted my arm so slowly and gently, in such a subtle
way, that I found myself falling into a deep trance and remained there for
quite a long time. I remember journeying through a very spiritual vision. . ..
This vision was a source of comfort and guidance for me. I remember that
vision each time I hold the hand of a person in a coma and follow her
breathing. I remember that she, too, may be going through a spiritual
experience of unique value to her. Many people in comatose states and near-
death conditions are freed from their ordinary identities and often undergo
mythic or spiritual experiences, or both. (p. 33)
This final resource brings together depth psychological theories about the
interface of mind and body, and techniques of hands-on body-work as ways of
communicating with and caring for people in altered states of consciousness—in the
underworld. These body work techniques take their place along with story, as ways to
bridge the gap between mind and body, and as ways to support those who are facing
death. This approach holds great promise not only for the care of those in comas, but
also for the work of establishing a new way of viewing and caring for those in the
altered state of Alzheimer's disease.
As I walked among the residents of my mother's Alzheimer's facility, I was
able to open to the suffering and find ways of communicating because I felt a
connection with these residents who included my mother. I was walking with them in
a region that was as strange for them as it was for me, and we found ways to
communicate and negotiate in this region. I extended my knowledge of human

experience—realizing that this was my mother's experience now, and could be mine
in the not-too-distant future.
My own experience, as well as the literature reviewed, calls for attention to
the inner experience of those who have Alzheimer's disease. The resources in the
depth psychology section demonstrate the effectiveness of the methods of depth
psychology in understanding inner experience and unconscious dynamics that
underlie symptoms of mental illness. I will use the methods of depth psychology to
interpret a narrative description of my experience with Alzheimer's disease.
Statement of the Problem and Research Questions
My goal in this study of Alzheimer's disease is to contribute to the trend
described in the Literature Review toward expanding the treatment of Alzheimer's
disease patients to include in the definition of treatment a consideration of both the
personal experience and universal significance of this disease. I hope to elucidate the
nature of Alzheimer's disease by exploring the interpersonal and intrapsychic aspects
of this disease, and by demonstrating the importance of responding to the ineffable
nature of the human soul in treating those who have Alzheimer's disease. It is my
hypothesis that attending to the human soul will shift the attitude about caregiving
from the view that it is a tragic struggle with demented behavior to the view that it is
an engagement with and a facilitation of a strange journey into death. I will approach
my goal by exploring the following questions:

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1. How does the Western cultural attitude toward cognitive impairment and
dying affect the experience of those who have Alzheimer's disease and their
caregivers?
2. How can caregivers discern and meet the psychological and spiritual needs of
people who have Alzheimer's disease?
3. Will the capacity to discern psychological and spiritual needs of people with
Alzheimer's disease enable caregivers to intervene more effectively, and
experience less emotional toll?

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CHAPTER 2
METHODS
Introduction
My methods for exploring the inner experience and needs of those who have
Alzheimer's disease are heuristic and hermeneutic. I use the heuristic approach of
looking at my own experience and that of others to gather data. This method utilizes
intuition to discern themes and meanings in the description of life events. These in
turn are synthesized into the narrative, or story, of my relationship with my mother as
she moved through the stages of Alzheimer's disease. I use hermeneutic methods
informed by the work of depth psychologist James Hillman to analyze the data in the
narratives. The primary difference between heuristic and hermeneutic research is that
the goal of heuristic methods is to describe, and the goal of hermeneutic methods is to
interpret.
There is a precedent for using both heuristic and hermeneutic methods to
research inner experience in the work of Sigmund Freud and Carl Jung. These
theorists used descriptive, qualitative data drawn from a patient's lived experiences or
therapeutic dialogues, and applied a particular interpretive lens to analyze the
patient's material. For example, in Freud's clinical studies he played the role of
participant observer in the research process, gathering data from his personal
experience with a patient (engaged knowledge). He used intuition to make
observations about the meaning of both biographical data and dialogues from
therapeutic sessions which he presented in the form of a description. He then moved

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from this personal, engaged stance to a more detached stance and a more abstract
level of interpretation in his formulation of the case presented in the description. He
examined the data through a particular lens, looking for certain themes (derivatives of
the Oedipal complex) in the symptoms. In this study I move from the engaged stance
of participant observer in the narrative descriptions to a more detached stance in the
reflections. In the reflections I use the lens of Persephone's underworld perspective to
analyze the data.
In Chapters 3, 4, and 5 interpretation occurs on two levels. The first is the
engaged level of interpreting events described in the narratives. This interpretation is
done by the speaker within the framework of the narrative and serves to enrich the
data, using the heuristic approach of self-search and intuition. For example, as the
speaker in Chapter 3,1 comment on my mother's story that I rejected her milk,
pointing out how this event set in motion certain kinds of struggles surrounding issues
of attachment and autonomy in my relationship with her. Such nodal conflicts
develop into themes which wax and wane through the narratives and influence the
way I describe and interpret my mother's experience of Alzheimer's disease. As
central themes they become a focus in the hermeneutic analysis of the narrative—the
more detached, abstract level of interpretation. In the reflections the personal themes
central in my mother's decline through the stages of Alzheimer's disease and my
participant observer role are examined using James Hillman's archetypal approach. I
look for insights into the personal story of my mother's confrontation with death by
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framing it as an enactment of the archetypal story of Persephone's relationship with
Hades.
Procedures for Gathering Data: Heuristic Theory and Methods
Theory
The heuristic research method became an organized and systematic form for
investigating experience with the publication of Loneliness (Moustakas, 1991).
Moustakas (1990) describes this research method as a process of self-search, self-
dialogue and self-discovery—a process in which the researcher is personally involved
(p. 11). He explains that the goal in heuristic research is to dwell on the nature and
meanings of personal experience in a disciplined way in order to deepen the
knowledge of a phenomenon:
In heuristic investigations I may be entranced by visions, images, and dreams

that connect me to my quest. I may come into touch with new regions of
myself, and discover revealing connections with others. Through the guides of
a heuristic design, I am able to see and understand in a different way. (p. 11)
The goal of seeing the experience of Alzheimer's disease in a different way is central
in this study. In keeping with the guidelines of heuristic research, I will make use of
images, dreams, and inner dialogue—both my own and those reported to me by
others who cared for my mother, as a means of deepening and expanding my
understanding of Alzheimer's disease.
Moustakas (1990) explains not only why the use of self is valuable in
research, but also what kind of knowledge is gained in heuristic research. He speaks
about the tacit dimension of knowledge by pointing out that, "we can know more than
we can tell" (p. 20), and gives the examples of sensing the treeness of a tree when
seeing only a part (a leaf), and understanding the mood of a person by integrating the
sense of a sad mood (heaviness of the moment) with the appearance of the mood
(furrowed brow, downcast eyes). Moustakas cites intuition as another kind of
knowledge that operates as a bridge between explicit facts (furrowed brow) and tacit
knowledge (sense of heaviness can mean sadness). He explains that intuition makes
immediate knowledge possible "without the intervening steps of logic" and states that
the more that intuition is experienced and tested, the more likely one will
develop an advanced perceptiveness and sensitivity to what is essential in
discovery of knowledge. . . . Intuition guides the researcher in discovery of
patterns and meanings that will lead to enhanced meanings, and deepened and
extended knowledge, (pp. 23-24)
Intuition plays a crucial role in discerning the inner experience and needs of those
with Alzheimer's disease. Reading body language based on the tacit knowledge of
what this language means, becomes increasingly important as an Alzheimer's disease
patient declines. The fact that I had had many years of experience reading my
mother's body language was a great help in caring for her.
Methods
My response to the call to research the experience of Alzheimer's disease has
required that I dialogue with texts written by other authors and also dialogue with my
own experience of Alzheimer's disease, going back into this experience again and
again in order to create a true depiction of the experience. Moustakas, in Heuristic
Research (1990), explains that heuristic research begins

with a question or problem which the researcher seeks to illuminate or answer.
The question is one that has been a personal challenge and puzzlement in the
search to understand one's self and the world in which one lives. The heuristic
process is autobiographical, yet with virtually every question that matters
there is also a social—and perhaps universal—significance, (p. 17)
This explanation of the heuristic method describes my process from the point at
which I learned of my mother's diagnosis. Her diagnosis became a question and
challenge which led to immersion in the topic and culminated in a depiction of my
experience of Alzheimer's disease in the narratives in the following chapters.
Moustakas (1990) describes six phases of heuristic research: "the initial
engagement, immersion into the topic and question, incubation, illumination,
explication, and culmination of the research in a creative synthesis" (p. 27). He
clarifies the meaning of immersion by explaining that this means
going wide open to discover meanings in everyday observations,

conversations, and published works. This requires that the researcher be alert
to signs or expressions of the phenomenon and willing to enter a moment of
the experience timelessly and live the moment fully, (p. 44)
These descriptions speak to ongoing experiences I have had since I began my
research on Alzheimer's disease. I seem to attract or be drawn to friends, neighbors,
and strangers who are involved with someone who has Alzheimer's disease. I also
find, when reading literature unrelated to Alzheimer's disease, that I discover insights
into Alzheimer's disease. The requirement that the researcher have the capacity to
enter a moment timelessly and live it fully is also a requirement of being in a
relationship with someone who has Alzheimer's disease.

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Moustakas (1990) addresses the validation of heuristic research by explaining
that validity is judged by the accuracy of the depiction of the meaning and essence of
the experience: "Does the ultimate depiction of the experience derived from one's
own rigorous, exhaustive self-searching, and from explications of others present
comprehensively, vividly, and accurately the meanings and essences of the
experience?" (p. 32). Moustakas draws from Knowing and Being, by M. Polyani, to
identify methods and criteria used in assessing validity: "certain visions of the truth,
having made their appearance, continue to gain strength both by further reflection and
additional evidence" (p. 33). I will make use of the explications of authors discussed
in the Literature Review as a means of assessing the validity of my description.
My use of heuristic methods in the narratives of Chapters 3, 4, and 5, yields
insights about myself, my mother, and our relationship, as well as insights about her
inner experience during her decline. The descriptions of others, especially accounts of
those in early-stage Alzheimer's disease, were major contributions to my
understanding of my mother's experience. I also made use of data from an earlier
research project (see Appendix C: Field Research Project—Approved Application for
Use of Human Participants) in creating the narratives of my experience. This earlier
research project used methods that involved human subjects. The heuristic method
used in this dissertation does not involve new research with human subjects. In the
narratives I am telling a story that includes self-dialogue and interpretation of events

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and situations in the course of the story. I am the speaker in the story. In the
reflections I am looking at the story through an interpretive lens that frames the story.
Procedures for Analyzing Data: Philosophical Tradition of Hermeneutic
Interpretation and Interpretative Approach of Archetypal Psychology
Philosophical Tradition of Hermeneutic Interpretation
The interpretive methods of archetypal psychology are part of a tradition of
hermeneutic interpretation that reaches back through Western civilization to Greek
mythology and philosophy. The ancient Greeks associated interpretation with the
Greek god Hermes, the messenger who moved back and forth between gods and men,
and escorted souls to the underworld. Accordingly, he is also the god of revelation
and thus transformation. In the field of depth psychology, as discussed in the sections
of the Literature Review on the theory of depth psychology, revelation evolves out of
a hermeneutic movement back and forth between the underworld—the associative,
metaphoric unconscious, and the upperworld—the literal, rational conscious mind.
This movement is not aimed at ultimate revelation or understanding, but rather at a
deeper understanding of complexity.
In Rape and Revelation, Evans Lansing Smith (1990) draws from the work of
James Hillman to personify in the figure of Hermes the nature of hermeneutic
interpretation and the role it plays in all disciplines:
As psychopomp he presides over our descent into the crypt of the text, from
which we return to the world laden with riches of the Wealth-Giver. He is the
wandering deity and the mediator between natural fact and spirited fiction,
between worlds, and between disciplines. Hermes is the thief who
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"appropriates from theology, from science, from literature, from medicine,

parasitical and penetrating everywhere, playing the thieving renegade among
the faculties" . . . he sponsors a "free play of the mind on all subjects," taking
us to Hades, the "God of the hidden underworld meaning in things." (pp. 136-
137)
Hermes, the mediator between natural fact and spirited fiction, between upperworld
and underworld, is the inner, intuitive spirit that guides hermeneutic research.
Richard Palmer (1969) explains that hermeneutics denotes the science of
interpretation, especially the principles of proper textual exegesis, and offers a brief
sketch of the formal method of hermeneutics:
The field of hermeneutics has been interpreted (in roughly chronological

order) as: (1) the theory of biblical exegesis; (2) general philological
methodology; (3) the science of all linguistic understanding; (4) the
methodological foundation of Geisteswissenschaftliche; (5) phenomenology
of existence and existential understanding; and (6) the systems of
interpretation, both recollective and iconoclastic, used by man to reach the
meaning behind myths and symbols, (pp. 33-35)
Palmer explains that the term hermeneutics originated in the 17 -century, but the
"operations of textual exegesis and theories of interpretation—religious, literary,
legal—date back to antiquity." (p. 35) He credits Friedrich Schleiermacher (1768-
1834) with "having reconceived hermeneutics as a science" and notes that this
marked the beginning of "nondisciplinary hermeneutics . .. the study of
understanding itself (p. 40). Palmer considers Schleiermacher the father of the
modern field of hermeneutics.
Thus the Greek god Hermes was appropriated by the scientific paradigm, and
assumed a new incarnation as a scientific research method. In the course of this
scientific reframe, the ancient Greek view of the cosmos—where Hermes moves back
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and forth connecting gods and humans and underworld and dayworld—yielded to an
Enlightenment view of a cosmos where gods and humans, underworld and dayworld
are separate entities, not parts of a whole. The awareness of death and the underworld
as part of the whole was lost. Indeed, recognition and knowledge of the underworld
heretofore experienced in myths and religious rituals, slipped into disrepute and out
of conscious awareness in the scientific paradigm. As has been discussed by
resources in the Literature Review, an alienation between mind and body, subject and
object, resulted when theorists such as Descartes established a world view in which
the subjective mind was understood to be completely separate from the mindless
object. The researcher was understood to be completely separate from the object of
research.
Although the dualistic view inherited from the Enlightenment has dominated
the modern mind, another paradigm shift began to assert itself in the late 19th- and
early 20 -centuries. This new paradigm had roots in the works of Romantic
visionaries Blake and Goethe who saw the cosmos as a unified whole in which nature
is not separate from, but revealed through, the human mind. In the fields of
philosophy and science, theorists such as Henri Bergson, Edmund Husserl, and
Martin Heidegger challenged the mechanistic materialism of Darwinism, and the
Cartesian focus on monadic knowledge as the only means to understand reality.
Bergson (1859-1941) used the term elan vital to describe the autonomous, internal
thrust that eluded the 19th-century scientist's focus on analyzing dead parts of an
organism and on seeing the life force as a mechanical process.

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In the field of natural science, Edmund Husserl (1859-1938) opened the door
into the intersubjective field, and developed research methods which allowed him to
study the latent, or underlying, essence of experience. He used the term life-world io
describe the intersubjective nature of life experience, and his theories underscore the
value of engaged knowledge. Husserl's theories provided conceptual tools for Martin
Heidegger's (1889-1976) goal of exploring "being as it discloses itself in lived
experience" (in Moustakas, 1994, p. 125).
Palmer (1969) explains that Heidegger's theories developed and departed
from Husserl's work, and describes how the work of Paul Ricoeur (1913-2005)
extends Heidegger's theories. One focus of Ricoeur's work is an exploration of the
relationship between hermeneutics as a formal, scientific research method and the
hermeneutics of depth psychology. Ricoeur's theory points out the similarity between
interpretation of a text and the psychoanalytic method of interpreting dreams. Both
hermeneutic methods and psychoanalytic methods interpret manifest content to
discover latent, or hidden, meaning (p. 43).
In the continuing evolution of hermeneutic science, contemporary theorist
Robert Romanyshyn extends the scope of intersubjectivity in his concept of complex
knowing. Like Ricoeur, Romanyshyn draws from the fields of both hermeneutics and
depth psychology in his theories. He emphasizes the descent which is inherent in the
dialogic movement of hermeneutics, and calls for a deepening into a spiral—a
movement into the intersubjective, transferential field between researcher and subject.
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This broadens the research into a study that plumbs not only the depth of the text, but
also the depth of the intersubjective field between researcher and text. Romanyshyn
speaks of research as a vocation—a calling, which demands commitment and
involvement with one's topic, without enmeshment.
The complex knowing in Romany shyn's theory provides a valuable
description of the descent undertaken in this depth psychological study of
Alzheimer's disease—a descent guided by Hermes in movement not only into the
depth of the topic of Alzheimer's disease, but also into the depths of the
intersubjective underworld—the transferential field between researcher and subject.
The unconscious dimension of the relationship between my mother and me produced
many symptoms in both of us, and dreams and fantasies in me. These are part of the
data that will be described in the narratives and analyzed in the reflections.
The underworld dimension which informs outer reality is the level
hermeneutic researchers and depth psychologists dip into, using various methods,
when seeking to understand the complexity of a phenomenon or the significance of an
experience. Husserl sought essence through the method of describing a phenomenon
from different perspectives (thematic variations). Freud, a contemporary of Husserl,
sought depth of understanding through the technique of studying the transference and
the free associating of his patients. Heidegger sought enriched understanding through
circularity. Carl Jung sought enriched understanding of symptoms and dreams
through the process of amplification of dream images, and James Hillman seeks
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understanding of pathological symptoms by interpreting their metaphoric meaning—
seeing them as enactments of mythic themes inherent in the unconscious.
Interpretive Approach of Archetypal Psychology
The theory of archetypal psychology was discussed in the Literature Review.
The focus in this section will be on the interpretive techniques of archetypal
psychology. The approach of archetypal psychology has been described as a process
of moving from the visible, literal view and the material world to the subjective,
metaphoric view of the invisible, unconscious, psychological dimension—a process
of psychological discovery (Hillman, 1975, p. 140). Archetypal techniques focus on
the function of the soul as motivator of fantasy, symptoms, and myths. In the
following comments on the relevance of mythology in psychological assessment,
Hillman (1979) describes his technique of using myths in the interpretation of human
experience:
Mythology is a psychology of antiquity. Psychology is a mythology of

modernity.. .. Our tenet also operates upon every mythic tale or figure,
removing them from the realm of story only and pulling them down and in,
showing how a myth precisely worked in the psyche, in its habits of mind and
heart, (pp. 23-24)
I use this technique to show how the myth of Persephone was enacted in my mother's
journey through Alzheimer's disease.
Hillman (1975) discusses the tools of his approach, explaining that the tools
are ideas. He emphasizes the importance of understanding that the idea that frames
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your approach to an experience influences what you see in the experience, and gives
the following example to clarify this point:
Once we considered the world flat and now we consider it round; once we
observed the sun rotate around the earth, and now we observe the earth turn
round the sun; our eyes, and their perceptions did not change with the
Renaissance. But our ideas have changed, and with them what we "see." (p.
121)
The interpretive approach of archetypal psychology is framed by the idea that the
mythic underworld describes unconscious dynamics—archetypal patterns—that
motivate symptoms of mental disorders. This idea both frames and determines what
will be seen in my interpretation of Alzheimer's disease.
Hillman (1975) outlines several steps in the archetypal process which he calls
psychologizing: reflection—a moment motivated by soul, of questioning, doubting,
suspecting an interior intention; interiorizing—moving from the surface to the less
visible, transposing, seeing through the logical to discern the metaphoric; and
mythologizing—creating a narrative or story (p. 140). His technique of mythologizing
addresses Oliver Sacks's call for a story that brings a case study to life, and it
counters the current dismissal of this imaginal approach as primitive or magical
thinking. Hillman's use of reflection and mythologizing is similar to techniques used
by physician Rita Charon in narrative medicine. In her work with patients, Charon
uses the skills of a close reader and reflective writer with the goal of being
imaginatively transported to wherever the story might take the one who surrenders to
it.
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I use the steps of the archetypal approach to study and interpret my experience
of Alzheimer's disease. I begin by suspecting an interior motive for the symptoms of
Alzheimer's disease, and proceed to focus on metaphoric meaning and mythic motifs
enacted by the symptoms, and then interpret these symptoms in terms of mythic
themes—pointing out how Persephone's myth works in the minds and hearts of those
who have Alzheimer's disease and of their caregivers.
The word underworld in the archetypal approach is used as both a metaphor
and an interpretive lens. Underworld is used as a metaphor for the unconscious—a
place where you go, or are taken, in your mind—as in a dream where the images you
encounter are a strange mix of familiar figures (mother, child, boss, favorite doll) and
unfamiliar figures. The conscious mind is the means of experiencing, remembering,
and describing images produced by the unconscious, and it plays the role of translator
and interpreter in the archetypal approach. Hillman (1975) explains:
Every notion in our minds, each perception of the world and sensation in
ourselves must go through a psychic organization in order to "happen" at all.
Every single feeling or observation occurs as a psychic event by first forming
a fantasy-image, (p. xvii)
The conscious mind experiences the underworld in the form of fantasy images and
translates them into logical meaning. When poets speak of journeys to the underworld
they describe a narrative fashioned by the conscious mind out of unconscious
experience. For example, Homer described Odysseus's journey to the underworld in
terms of a story about a man who sails to the edge of the world and encounters mythic
figures and ancestors. Hillman emphasizes that these fantasy images are not made up
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by the conscious mind but originate in the unconscious. They are formed by the
imaginal process of the soul and encountered by the conscious mind.
There are many modes in which the conscious mind encounters the
unconscious. These modes are depicted in myths as the way the hero descends.
Sometimes the hero goes with a guide and sometimes the hero is seized. In my
analysis of the data of my mother's decline, I perceive a resemblance between the
abduction of Persephone and the psychological experience of people who have
Alzheimer's disease. They are abducted to the unconscious, and they lose the
cognitive capacity to interpret their experiences of the unconscious. The significance
of underworld as a metaphor for the psychological experience of those who have
Alzheimer's disease will be explored in the reflections of Chapters 3, 4, and 5.
The use of the word underworld as a lens, or perspective, in an interpretive
study is highlighted in Evans Lansing Smith's (1990) study of mythic motifs in
modern culture. Drawing on Hillman's theories, Smith examines the motif of descent
to the underworld in his exploration of the focus in modern culture on underlying
dynamics. Smith explains this focus as an enactment of the mythic nekyia, or journey
to the underworld, and describes the nature of this focus in the arts and sciences of
modern culture as a shift to an underworld lens:
The shift from the naturalistic plot novel to the epiphanic structures linking
moments in time by the invisible connections of metaphor and myth. Both
novel and poem undergo this transition at the time of the discovery of the
underworld of the mind by Jung and Freud, and of the material universe by
Einstein, Rutherford and Bohr. Underlying these radical shifts of perspective
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is precisely the passage from material surface of linear relations to the

underworld of intangible metaphor imaged in the rape of Persephone, (p. 138)
Hillman's archetypal techniques are based on the belief that that there is a
potential inherent in the shift from upperworld to underworld perspective for the
healing of pathological symptoms. As a therapist Hillman focused even less than did
Jung on the history of his patients and even more on the patients' images—the
contents of the breakdown or pathology. His archetypal approach to the treatment of
mental disorders stresses reflecting on the underlying, or metaphoric, meaning of the
patient's images and symptoms, and establishing the proper relationship with these
images and symptoms. According to Hillman, a proper relationship with images
requires opening to a viable engagement with them as the language of soul.
Engagement with images and symptoms opens the therapist or caregiver to what, in
the unfolding drama of a disorder, moves the soul.
Thus, Hillman's approach to interpreting symptoms entails establishing a
relationship with them by reflecting, transposing, and mythologizing—looking at
them from an underworld perspective—through the underworld lens. This perspective
focuses on what Persephone is experiencing in the underworld. In the following
example, Hillman (1979) demonstrates the use of an underworld perspective in an
interpretation offorgetting, the chief symptom of Alzheimer's disease:
But depth psychology based on an archetypal perspective might understand

forgetting as service to a deeper purpose, seeing in these holes and slips in the
dayworld the means by which events are transformed out of personal life,
voiding it, emptying it. Somehow we must come to better terms with Lethe
since she rules many years, especially the last years, and we would be foolish
to dismiss her work only as pathological.. . what is being forgotten out of the
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dayworld of our lives may be making possible the inflow of another sort of
remembrance—once we turn our attention from chasing the lost bit of data to
the empty, sinking feeling that forgetting leaves behind and which is also the
mother of musing. . . . That forgetting and dreaming have so close a
relationship implies that dreaming itself, as we said earlier, is a process of
forgetting, of removing elements out of life so that they no longer hold such
interest of letting slip, washed downstream, a movement out of ego into
psyche, (pp. 154-155)
In this example, the techniques of the archetypal approach enable Hillman to
explore a deeper, or prospective, meaning of forgetting. Using this archetypal
approach to interpret my experience with my mother, I perceive my sinking feeling in
response to Mother's forgetting—to the loss of connection between us— as her
disappearance into a strange underworld. I consider Hillman's speculation that she
may have forgotten the dayworld to make room for the inflow of another world.
When I reflect on how Persephone's myth is at work in my experience, I see myself
as Demeter, the caring human connection, at times raging and grieving over my
mother's disappearance, and at times giving way and joining her in the underworld. I
also see myself carrying out the role of Hecate, bearing witness to my mother's
journey out of ego into psyche.
For Hillman (1979), Hermes and Persephone are important, dynamic
presences in the interpretive work of archetypal psychology. He describes Hermes as
an inner, intuitive spirit, who guides the process of nekyia, facilitating movement
from one realm or style of consciousness to another, guiding the initiate through the
gate into the underworld perspective—into the depths of an experience:
For Hermetic consciousness there is no upperworld versus underworld

problem. . . . Hermes inhabits the borderlines . . . he makes possible an easy
commerce between the familiar and the alien. . . . The underworld perspective
begins at the gates of entry, where entry signifies initiation . . . everything
within is able to be understood in a double sense, hermetically. . . . We meet
the gates less in dreams than at the moment of awakening at the threshold.
Awareness struggles between nightworld images and dayworld plans, (pp.
180-181)
The hermetic style of consciousness sees not underworld instead of
upperworld, but underworld at the heart of upperworld. Hillman's point that
awareness of the depths is fraught with struggles between the dream images and
dayworld plans speaks to a struggle I experienced often when trying to be present in
my mother's world and, at the same time, carry out dayworld plans. The presence of
Persephone in interpretive work means the presence of a style of consciousness that
opens to Hades. As the archetypal initiate, she opens to darkness, revelation, and
transformation.
I use this archetypal approach, relying on the presence of Hermes and
Persephone, to interpret the narratives of my experience with Alzheimer's disease. I
analyze my personal experience and the experience of others in the context of a
mythic confrontation with death. I start with what moves my soul on the level of
personal experience and, guided by Hermes in discerning underlying meaning, reflect
on the universal pattern or significance in this experience. The capacity to use an
imaginal lens when treating—caring for—those with Alzheimer's disease promotes
psychological healing. It shifts the focus of care from treating disorder to discerning
and caring for the needs of the soul, and this shifts the nature of the relationship
between caregiver and patient.

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Limitations and Delimitations of This Study
This study began with concern about how to maintain a relationship with my
mother as she moved through the stages of Alzheimer's disease. In response to this
concern, I drew on my innate inclination to look for underlying motivation for
behavior, and on my lifelong experience of reading my mother's body language. I
also drew on my training as a psychotherapist.
The value of drawing on my innate method of gathering knowledge and my
training in the use of psychological methods such as empathy and attention to
metaphoric meaning is that I can explore a level of human experience not accessible
to quantitative research. The limitation of my transference to the topic and of the use
of qualitative methods is that the knowledge gained lacks quantitative precision and
the research cannot be replicated.
Organization of Study
Chapter 1: Introduction; Literature Review; statement of the problem;
research questions
Chapter 2: Methods; organization of study
Chapter 3: Narrative depiction of early-stage Alzheimer's disease and
reflection
Chapter 4: Narrative depiction of mid-stage Alzheimer's disease and
reflection
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Chapter 5: Narrative depiction of late-state Alzheimer's disease and
reflection
Chapter 6: Conclusion
CHAPTER 3
EARLY-STAGE ALZHEIMER'S DISEASE
Narrative
Introduction
It's hard to know when the disease started. Was it solely genetic—a
physiological deterioration in my mother's brain, activated as a part of her aging
process like the arthritis in her fingers? Her paternal grandmother, aunt, and sister had
all developed some form of late-onset dementia. Was it a genetic predisposition,
exacerbated by depression, isolation, the blow to her head when she fell? Was it
solely environmental—the blow to her head?
Often I have heard the phrase, "Looking back, I can see signs that I didn't
recognize at the time." As I look back, one of the first signs was the irrational quality
of Mother's irritability toward my aunt. I didn't think much of this because she had
always been antagonistic with my aunt. Another sign that did make me consider the
possibility of mental decline was the realization that she had not brought a book with
her when she came for my son's graduation in June, 1997. She had always been an
avid reader, never without a book. I felt a wrench when I realized she was not
reading. On a semiconscious level I knew this was a significant shift, and I felt an
incipient sense of urgency in my desire to spend time with her and share things we
both loved before it was too late.
This chapter describes the early stage of Alzheimer's disease, a time of
gradual realization that an evolving pattern of symptoms meet the criteria for that
diagnosis. There is no universally accepted definition of the stages of Alzheimer's
disease. I am defining the early stage as the phase before the diagnosis. Each case of
Alzheimer's develops in the context of a unique personality and a unique system of
family dynamics, as well as in a particular culture and era. The biographical
information about my mother and our relationship will be presented in this chapter as
the context in which the phenomena of Alzheimer's disease developed. Providing the
narrative context for a description of Alzheimer's disease is in keeping with Oliver
Sacks's (1990) recommendation that the treatment of neurological disorders include
the human subject at the center of a description of a disease: "we must deepen a case
history to a narrative or tale; only then do we have a who as well as a what" (p. v iii).
I am the speaker in these stories about my mother, the one who is telling the
tales. In one sense, I am giving an eye-witness account of actual events. In another
sense, I am weaving stories with strands of actual events as I saw them, and with
strands of hearsay, feelings, thoughts, and fantasies. One of my goals in this narrative
is to walk the line between subjective memoir and objective case study. In my reading
of books written about Alzheimer's disease by family caregivers, I was always
curious to know facts (birthdates, age when diagnosed, specific symptoms), and
subjective anecdotes—stories that provide a sense of the essence of the person with
Alzheimer's disease and the nature of the relationship between the author and the
person with Alzheimer's disease. As the speaker in the narrative I am telling stories
and relating my reactions—observations and feelings stirred in me by these stories.

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The observations point out themes that become central in the story of my mother's
experience of Alzheimer's disease.
My narrative focuses on the completion of a circle that began in 1942 when
Mother brought me into the world. She nurtured me in ways that instilled a love and
respect for the natural world and nonhuman creatures, a love of music, myths, and
fairy tales, and a knowledge and appreciation for the art of homemaking as a way of
nurturing body and soul. There was also a dark, turbulent aspect of my mother's
caregiving. During the 60 years of my relationship with her, I often experienced her
moods and needs as an inner vise which constricted me. I was aware of her gifts and
her love, and I moved between the two poles of feeling anxious and constricted by her
needs and moods, and grateful for her gifts. I came to see her last years as a time for
us to make peace and for me to nurture her in her final years as she had nurtured me
in my early years. The challenges inherent in caring for her raised questions of how to
meet her needs without overreaching my capacity to give: how to care for her without
being either a miser or martyr.
Biographical Background
My mother's story began November 1, 1918. She was born to parents who
had grown up on farms in northern Michigan. Her father had left his family's farm to
search for a job that would provide for his wife, 8-year-old son, 7-year-old daughter,
and new baby, Marjorie. The struggle to make ends meet triggered depression in her
parents and cast a pall over their family life during my mother's childhood and early
adolescence. She talked often about feeling lonely—not close to her parents or her
siblings who were close to each other but, because older, not close to her. She told a
story of awakening in the middle of the night when she was 5 years old and, feeling
lonely, she went to the living room and curled up with the dog instead of going to her
parents.
Mother told stories that revealed how important her dog and nature became
for her as she was growing up. Her family lived in a small town on Lake Michigan,
and she loved swimming and roaming through the woods and sand dunes with her
dog. She learned to fish and garden from her father and maintained that her family
never went hungry because her father was such a good fisherman. From her mother
she learned a love of books. One of her favorite books as a child was Girl of the
Lirnberlost, a story of a young girl who is estranged from her mother and finds
nurture in the forest. From these childhood experiences evolved an attunement to
nature and an inclination and ability to nurture plants and animals. She wrote a
children's story after my father died that describes, I believe, her inner life (feelings
and dreams) as a child (attached as Appendix A: Love Story by Marjorie T. Blacken/
It describes a lonely princess who escapes to the forest and finds love and happiness
among animals. This story is similar to other stories Mother told about feeling lonely,
yearning for closeness, and finding it with dogs but not with her parents or siblings.
The theme of loneliness and yearning for closeness began in Mother's early years and
continued to be a central theme throughout her life.

During Mother's late adolescence, her family settled into a more comfortable
life. Her father had joined the Coast Guard and worked as a lighthouse keeper. She
matured into a beautiful woman and her older sister, Audrey, began to take more
interest in a younger sister who had, until this point, been dismissed as a nuisance.
Audrey began to notice the attention her little sister attracted from boys and began to
include her in outings and parties.
My mother had been shy and an unmotivated student in high school, with no
career ambitions. The attention of boys, together with cultural and family
expectations that young women should marry and be homemakers, steered my mother
toward the goal of marriage. I think she wanted to make a warm home like the one
she had yearned for as a child, and to have a close relationship with her children. She
met my father when she was 20. They married when she was 22 and settled in a town
near her parents. She traveled between her new home with my father and her parents'
home often in the early years of her marriage. This was a movement between her
desire to make a home of her own and her desire to return to her parents' home and to
the fun of her sister's social life.
As a wife with a home of her own, she relished cooking and gardening and
had an innate aptitude for home decorating, but being housebound with the daily
routine of chores stirred dissatisfaction and a desire for the carefree life she had
before marriage. As a child she had been sent out to play while her mother and older
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sister did the chores. Her mother, an excellent seamstress and immaculate
housekeeper, passed these skills on to Audrey but not to her younger daughter.
Mother's adjustment to marriage was made more difficult by the fact that she
and my father needed a kind of support that each was unable to give to the other. In
my mother's case, the neglect of her childhood left her needing someone to fill unmet
needs for emotional support. My parents found some of the support they needed from
my mother's parents during frequent visits. The support for my mother was not
entirely positive, however. My grandmother loved my mother, but was skeptical of
her ability to run a home and manage a family.
Mother's central goal after her marriage was to have a baby. I was born in
1942, when she was 24. She told many stories about my early years. There are several
themes in these stories: love, humor, disappointment, anger, frustration, and
determination that her child would be well-behaved. The main feeling stirred in me as
I remember Mother's stories is anxiety about her expectations of me. This anxiety
influenced my attitude toward my mother and was a factor in my interpretation of
Mother's inner experience, from my early years to her last years. The message I see
in Mother's stories of our first interactions is one of disappointment. She told me
often what a long, hard labor she had with me and that, although she had plenty of
milk, I turned up my nose at it. Another story Mother often told was about my falling
off a bed at 2 years old and gashing my chin. She describes the alarm she and my
grandparents felt when they rushed into the room where I stood crying, with blood
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streaming from my chin. The punch line of this story is that I stopped crying when I
saw the alarm on my mother's face and said, "Does it hurt, Mama?" My
understanding of human development tells me that concern about parents is normal
and typical in children, but I think my concern was tinged with abnormal anxiety and
hypervigilance in response to a dedicated and gifted, but harsh and emotionally labile
mother.
My grandparents and aunt doted on me and became stable, loving resources in
my life. They were, however, critical of my mother's parenting. A dynamic
developed between my mother and me that was intense and contentious. I think she
was determined to prove that she was a good mother by focusing on obedience. When
I disobeyed her it provoked rage and harsh discipline. There was love in our
relationship, but also misunderstanding and a clash of wills that began with how she
would feed me and continued through the last years of her life.
My grandmother and aunt worried about her harshness, but their criticism
made the situation worse. My aunt, who enjoyed a very comfortable lifestyle and did
not have children, became like a second mother to me. Mother alternated between
appreciating my aunt's support and resenting her criticism. My aunt told a story often
about sitting on a porch with neighbors and hearing one of the neighbors express
shock at the sight of a woman pulling a baby out of a carriage and spanking her. My
aunt recounts how embarrassed she was when she realized that the woman was her
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sister. This story was told in front of my mother, who would become defensive and
explain that she was trying to keep me from standing and falling from the carriage.
When Mother became pregnant with my sister in 1945, my grandmother and
aunt were very upset with her because they thought she was not a good mother.
Mother's situation was made worse by the fact that my father was drafted and she and
I had to move in with my grandparents. Mother tells a story about a car trip she and I
took during the time we were living with my grandparents. She relates that as she was
driving, I was studying her feet on the car pedals and I then looked up and said, "I
could do that." She would laugh when she told the story and comment on my
impertinence at thinking I could drive when my feet did not even reach the floor of
the car.
As I tell this story I see what may have been the beginning of my concern that,
because of her emotional upheavals, I could not always rely on her. I also may have
been absorbing my grandmother's attitude that my mother was not competent and
needed help. The concern I developed for my mother in these early years was multi-
faceted, containing aspects of fear, resentment, rebelliousness, wariness, and an on-
going worry that my mother was in distress and it was either my fault or my
responsibility to find a way to help her. This worry becomes a central theme during
Mother's final years.
When my sister was born, our family settled into a stable routine in a modest
home in a nice neighborhood. My father bought a partnership in a boat business,

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which became his central passion. He worked long hours in the summer and I rarely
saw him. During the years between 1946 and 1958 my sister and I have memories of
two mothers. There was the mother who was talented and skilled as a homemaker,
well-read, and respected in the neighborhood. She was known for being a good cook,
keeping a lovely garden, and taking the neighborhood children on annual adventures
to pick May flowers, to the beach, and to a nearby zoo and amusement park. Then
there was the mother who was unstable emotionally and harsh to the point of cruelty
at times. My sister and I wrote letters pleading with her not to be angry—promising to
help more, eat our peas, anything that would assuage her anger. We both have a
memory of Mother's fury at me because I walked home from a church youth group
meeting after dark instead of calling for a ride. I recall being terrified by her rage and
can picture her flinging her new, white coat around her shoulders and slamming the
door behind her. She spent the night at a hotel. My father gathered a purple quilt
around my sister and me and read to us from the Bible until we stopped crying.
Although the inner life of our family was disturbed by frequent emotional
upheavals, the outer routine remained stable until my father lost his business in 1958.
This blow sent him into a depression from which he never recovered. We moved to
Orlando, Florida, where he took a job as a clerk. He was a very steady physical
presence but was emotionally devastated. My sister and I both thought of him when
we came across Thoreau's comment about people who lead lives of quiet desperation.
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My mother, sister, and I hated living in Florida. Our life there felt like a
descent into hell. It was hot and muggy and we were separated from much that had
been meaningful—family, friends, and seasonal patterns. I began to focus on how to
leave Florida and decided that going to college was my way out. My mother had
urged me to go to college from the time I was 6 or 7 years old. I felt she wanted me to
do something she wished she had done. I did graduate from college and married in
1965.1 moved to New Jersey with my husband, where I taught school. My college
years and marriage seemed to cause a breach in my relationship with my mother. On
one hand she was proud of me, and on the other she was resentful and, during angry
outbursts, accused me of being arrogant and of thinking that I was better than my
parents. This breach deepened as my husband and I developed a life that was more
comfortable than my parents' life had been.
My parents moved to Cape Canaveral, Florida, in 1975 and retired several
years after this move. Their life continued to be turbulent. There were times when
they enjoyed each other's company, but these times were always interrupted by my
mother's emotional upheavals and my father's withdrawal.
They were devoted grandparents to my three sons and in the early years I
made regular trips with my sons for visits with them. These visits were difficult. I felt
torn between wanting my parents to have a close relationship with my children and
wanting to protect my children from the turbulence. As time went on, I visited less
frequently, keeping in touch through letters, pictures, and telephone calls. I know both
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of my parents were disappointed that they did not have a close relationship with their
grandchildren.
When my father died in 1991, my relationship with Mother was caring, but
there were many toxic undercurrents—many disappointments and negative memories.
I spent 2 weeks staying with her in Florida during Christmas of 1990, while my father
was dying. She and I and my sister, who lived near my parents, were close—
comfortable with and supportive of each other. There was little dissension during this
time, but I missed being with my husband and children at Christmas and began to
consider a question that would become much more prominent in the coming years:
how can I meet my mother's needs and not neglect my other relationships?
After my father's death, I helped Mother with her finances and established a
routine that we would spend a week together during the summer in Michigan, and she
would spend a week with me in California for Thanksgiving. I tried to help her
develop a support network, but she grew increasingly isolated and depressed. I was
getting phone calls at all hours and she was unwilling to turn to other sources of
support. Finally I established a weekly call on Sunday when we would have a
leisurely conversation and address her needs, and she began seeing a psychiatrist
whom she liked.
The years 1991-1995 were fairly stable. Mother found a puppy at the pound
named Joey who became the center of her life. There were occasional upheavals
during these years and an inability or disinclination to develop friendships and

community involvement, but most of the time she seemed content. She lived in an
area where she had lived for 20 years and she knew most of her neighbors, though she
kept her distance. She was safe and close to my sister although their relationship was
extremely contentious. My aunt and her husband visited every winter, and my mother
and I visited my aunt during our summer trip.
One significant incident occurred in 1994. Mother tripped on an irregular
place in a sidewalk and fell flat on her face, blackening both eyes. During a physical
exam to see if she had sustained any internal injuries, the doctor discovered she had
an aneurism in her brain. The doctor explained that it was not symptomatic and that
she had a choice about whether to have it repaired or not. She saw a specialist during
her next visit with me in California and decided not to have the aneurism repaired. I
have wondered often if the fall or the aneurism, or both, could have been related to
the dementia she developed. There is a theory that a blow on the head could be a
factor in the development of Alzheimer's disease.
During the years after my father's death, Mother and I grew increasingly
close. We both enjoyed our time together and, although I knew she was lonely and I
thought about moving her to California, the fact that I would be taking her out of a
familiar environment and moving her to a place where I would be her only resource,
and the fear that it would be much harder for me to live my life fully if she lived
nearby, kept me from suggesting it during these years.

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The relatively stable routine Mother and I had established was altered
significantly in 1995 when my aunt's husband died suddenly. He had gone to great
lengths to arrange for a trusted member of his family to manage his estate so that my
aunt would be well cared for financially, and had arranged his will so that after my
aunt died, the estate would be divided between her family and his family. My aunt's
financial needs were met, but her emotional needs were not. I was very close to her
and became the liaison for a group of family members who supported her. I
established the same routine with my aunt that I had with my mother. I called her on
Sunday and included her in the summer trip with my mother and the week with my
family at Thanksgiving. Unfortunately, my mother resented the fact that my aunt was
included in our visits. There were moments when we had fun together, but the
underlying feeling was contention.
It had become obvious after my uncle's death that my aunt was experiencing
cognitive decline which was eventually diagnosed as Alzheimer's disease. During the
visits with my aunt and mother, my aunt was often disoriented and agitated, and my
mother was resentful. During a Thanksgiving visit I left them alone one evening after
dinner to attend my son's football game. When I returned my aunt was angry and
silent, and Mother was angry and venting. My aunt had spilled some milk and Mother
resented having to clean up the mess. She related that she had asked my aunt why she
had never had any children of her own.

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In June, 1997,1 arranged for my aunt and mother to come to California for my
youngest son's graduation from high school. I was in close contact with my cousin
and my uncle's sister, who both lived near my aunt, and they agreed to organize her
packing and get her on a plane from Grand Rapids to Detroit. I had arranged for
Mother to meet my aunt's plane in Detroit and then accompany her to the gate where
they would board a plane for San Francisco. I knew Mother was not happy that she
had to help my aunt and travel with her, but I think she knew I was trying to care for
my aunt as I was caring for her, and she did not quite dare make a fuss. What I did not
realize at the time was that Mother was experiencing cognitive decline and trying to
compensate for it. When they arrived, my aunt was excited like a small child—so
happy to see me, and Mother was full of complaints about the difficulty she had had
managing the tickets and my aunt in the airport. At the time I thought my mother's
frustration was driven mainly by antagonism toward my aunt. I now realize that she
was beginning to experience cognitive decline and this made her anxious about
managing both the tickets and my aunt.
During this June visit, which would be my aunt's last visit to my home, there
were both good and bad times. The two sisters were continually irritable with each
other, but they were both very happy being included in our family celebration. I
enjoyed caring for them. One evening I was cooking dinner and my husband,
youngest son, aunt, and mother were watching the news. I looked in from the kitchen
to see that my aunt was dozing, and my son had lifted her feet onto the couch and put
a pillow under her head. I felt a great wrench that here were two women I loved
deeply, who yearned for tending and love in their last years, and my family and I
enjoyed caring for them, yet there seemed no practical way to arrange our lives so
that we could provide full-time care for them. The wrench I felt at this moment
became chronic in the years to come, and is a driving force in this study.
Long-Distance Caregiving in the Early Stage of Alzheimer's Disease
When my aunt returned to Michigan after her visit in June, she moved into a
dramatic decline and died on July 15, 1997. When I called Mother to tell her that my
aunt had died, she was vague in her initial response and decided she did not want to
attend the funeral. I told her she would be inheriting a sizeable sum of money and
asked her if she wanted my husband and me to manage it for her. She grew irritable
and said she wanted to manage it herself. I reminded her that she had wanted my help
with her finances after my father died and she responded that she needed my help
then but she did not need it now. I felt concern but thought she would change her
mind. She didn't. I tried to explain that she needed to set up an investment account so
that she could earn interest on her money, and she continued to insist that she would
manage it herself. It became clear to me that she wanted to maintain independence
from me, so I stopped pressuring her. Finally, in September, during a telephone
conversation, she informed me that she had put her money in the hands of an
investment advisor. I felt great concern and asked for her permission to speak with
her advisor. She seemed relieved to have me involved in this way. Fortunately, the
advisor was honorable, competent, and open to my becoming legally eligible to
receive copies of my mother's investment statements. The concern about her finances
was temporarily allayed but would become a major issue during the next year.
Through the autumn months of 1997, communication with Mother was
fraught with periodic power struggles over problems with her car and credit card
purchases she was making in response to telephone solicitors and magazine ads. She
befriended a handyman named Dudley, whom I suspected of stealing money from
her. Her dependence on him alarmed me, and I responded with anxious efforts to set
up a safe-guard for Mother's money with a very supportive bank manager, and to find
resources to help her with gardening so she would not need Dudley. This began a 2
year effort in futility, as she continued to be unwilling to let me help her with her
money, and unwilling to cooperate in developing a support network. We continued
our weekly telephone conversations, and these were a mix of warmth and arguing.
Her visit at Thanksgiving went well and allowed us to reestablish a trusting
relationship.
The arrangement since my father's death had been that my mother would
spend a week with me at Thanksgiving and Christmas with my sister. Unbeknownst
to me, my sister had been slipping into fragile health and had become unable to
provide any help for our mother. When I called Mother on Christmas, 1997, she was
crying as she said to me, "After all the Christmases I made for you girls, I never
thought it would come to this—that I'd spend Christmas alone." I felt angry that she
blamed me, guilty, and intensely sad that she was so unhappy. She had made lovely
Christmases for my sister and me. After I spoke with Mother I felt myself entering a
familiar box: my mother is unhappy and I seem to be the only one at fault—the only
one who can or will try to help, nothing I do helps enough, and I feel guilty for being
happy myself. I resolved that she would never spend another Christmas alone.
As we moved into 1998,1 began to realize that symptoms I had ascribed to
irritability or depression were signs of cognitive decline. In January, I called to tell
Mother about the death of my father's younger brother. She had been very fond of
this brother but responded with a casual, "Oh." This response brings to mind the story
Aaron Alterra told about his wife's casual response to the death of a close friend.
Alterra explained this response as a lack of empathy caused by the deterioration
associated with Alzheimer's disease. In the context of this conversation with my
mother, it seemed to me that her casual response was not lack of empathy, but was
related to an eroding capacity to remember people and relationships in an abstract
context. The abstraction of a name and the concept of death seemed difficult for
Mother to grasp. During this same conversation I told her a funny story that my
uncle's wife had told me about him. Mother seemed to connect with the context of
this story, and she was amused.
During the first months of 1998,1 began to feel concerned about Mother's
daily affairs—her finances, her medical appointments, and her daily needs. I tried to
find ways to help her without offending her. It was clear to me that she was not seeing
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a dentist regularly, she was not making appointments with her doctor to discuss
symptoms of dizziness and back aches, and she was turning to Dudley more often for
help with such problems as car maintenance and help lifting fertilizer and pots for her
garden. Her first major expenditure after she inherited the money from my aunt was
to hire Dudley to make a brick patio in her garden.
Mother's irritability with me grew less intense as I shifted to a position of
helping her strategize about her daily needs, but I had to tread carefully around the
subject of Dudley. It had become important to her to maintain some independence
from me, and Dudley's help allowed her to do this. This desire for independence was
a change in her attitude toward me. I speculated that the shift in attitude may have
been caused by a number of factors: her resentment at my attention to my aunt, her
disappointment and sense of abandonment on Christmas, a sense of empowerment
that came with inheriting money, and cognitive decline that affected her judgment.
Although her cognitive capacity was beginning to decline, her feelings were
very much intact. She was aware of my concern and efforts to support her and
responded with loving appreciation, but she was also aware of my distrust of Dudley
and responded to this with evasiveness and defensiveness. As a way of shifting to a
more positive focus on her inheritance, I began a dialogue with her about what she
would like to buy with her money. Besides her garden, her greatest desire was for a
new car. This became a focus for our conversations. She visited showrooms and
decided on a black Mercury sedan. I talked with the manager of her bank and she
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served as a liaison between the car salesman and me. In March, I went for a visit and
finalized the paperwork, and Mother drove home with a new car. Although she only
had the car for 1 Vi years, I think it was a worthwhile purchase because it was a boost
to her self-esteem.
When I arrived for this visit in March, I was met with a heavy smell of gas as
I entered my mother's home. I discovered that she was heating her home by turning
her old, gas oven up to 500 degrees and leaving the oven door open. I was concerned
that there was a gas leak and called the fire department. They sent a truck with alarm
wailing. This brought many neighbors to the front door while the firemen inspected
the stove and then told us that it was not only unsafe to use a gas oven to heat a home,
but this particular gas oven was unsafe for any use. As my mother and I stood
listening to the firemen, I watched her look at the neighbors gathered at the door, then
at the firemen and then at me and roll her eyes. After everyone left she explained, in a
tone of strained patience, that she and my father had always used the oven to heat
their home and they had never had any problems. I admitted that I have a tendency to
rush into fixing things, but convinced her to buy a new stove by saying that I would
worry less if we bought a new stove.
We had a good time together driving in her new car, trying to figure out the
controls on her new stove, and going out for lunch and dinner. Usually, when I
visited, I drove her car, but I was happy to let her drive because she was so excited
and because I wanted to assess her driving ability. I was impressed that she had
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figured out routes that avoided dangerous intersections and rush hours. She drove
slowly but was careful. At the end of this visit I had shifted from thinking I needed to
move her immediately to California, to thinking that she was enjoying her home,
Joey, and her routine and that she was creative in finding ways to compensate for
limitations. She had tied big knots in Joey's leash so that her arthritic hands, which
she could not close completely, could close around the knot.
The central concern I had after the visit in March was worry that Dudley was
talking her into giving him money. We began to dialogue in our telephone
conversations about my concerns and she agreed that it was not appropriate for her to
give him money, but she admitted to loaning him money. She was willing to discuss
this issue with me as long as I played the role of concerned advisor and not critic.
In the spring we began to plan our summer trip together. I had planned that I
would pick her up at the Grand Rapids airport and we would stay at bed and
breakfasts in familiar towns along the coast of Lake Michigan, and visit friends and
family. We would work our way to Chicago, and visit with my oldest son who lived
there. On the final day of our trip together, we would have a get-together with my
whole family. My husband and my two younger sons would fly into Chicago on the
way to a family vacation in Northport, a small town in northern Michigan where we
have a cottage.
Mother and I enjoyed this trip very much. When Mother emerged from the
plane she looked very pretty and was warm and excited to see me. During dinner on
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the first night of the vacation she talked about how much fun it was to be out with
people, and she expressed determination that she was going to get out more when she
returned to Florida. This gave me hope that she could manage her life and find
enjoyment. This visit was the last time it was possible for me to have long talks with
Mother.
She displayed several symptoms during this trip that I now know are typical
symptoms of Alzheimer's disease. She had no interest in reading a book, she became
disoriented in the bed and breakfast and could not find her way from the living room
to our room, and she continually dug around in her purse looking for things like her
plane ticket. As we were driving from town to town, she would periodically start
searching through her purse. I felt mildly frustrated but not too concerned about his.
At a certain point each day I would help her locate whatever she was trying to find.
By the end of the trip I had put her tickets in a zippered compartment in her purse.
When she began looking for the ticket I could tell her to try the zippered
compartment. She would find the ticket and put it somewhere else and I would find it
each night and put it back in the compartment.
There were other signs that she was declining. She brought an old, damaged
suitcase instead of the new one I had bought for her, and she did not bring much
underwear. I had to wash out her underwear each night. She also seemed to have less
physical stamina. One afternoon we went to a garden shop and bought plants to make
a garden in the backyard of my son's apartment. While I got carried away buying
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plants, she found a place to sit in the shade and looked very tired. We had a family
dinner and she seemed very happy to be with us. The next day I sat with her in
O'Hare Airport and felt anxious as I watched her dig through her purse. She saw my
concern and told me not to worry, that she felt renewed by this trip and looked
forward to getting back to her life with Joey. I had arranged for a shuttle-driver
named Jack to pick her up at the Orlando airport. Jack was very reliable and kind-
hearted and had been taking my mother to and from the airport for years.
I wrote the following journal entry about this trip with my mother:
One week with Mother. Rich and satisfying as well as painful and worrisome.
I felt very much at ease—we talked, were silent, laughed and shared stories,
insights and feelings. Our talk was filled with the ghosts of our family and
past. Painful to see her so diminished. She's easier to be with when she
doesn't have the edge, but there's a sense of loss—and worry. How to care for
her—help her without offending her or intruding on her way of living out her
life. So worrisome that she isn't reading, that she's slow and misplaces things
and seems less invested in life. Is she giving up? Taking her leave? Touched
and impressed—her guidance in what to put in Michael's garden and the fact
that she carried so many pitchers of water for the plants.
In the fall of 1998 I began a PhD program in depth psychology. I had balanced
homemaking and parenting with a small psychotherapy practice for a number of years
but, when my youngest son left for college, I felt the need to redefine myself and
discern a meaningful direction not only for my practice, but for myself as an elder.
The coursework provided resources for me in the unfolding experience with my
mother, but was very demanding of time and energy. My mother's life was fairly
stable during these months, but I was becoming much more involved in her life. I was
planning to spend a weekend with her for her 80th birthday on November 1st, and I
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was planning for her usual visit at Thanksgiving in California, as well as a arranging
for her to travel to Northport to spend Christmas with my family.
Her birthday weekend was difficult. She seemed depressed, and I could not
figure out why. Her life seemed the same as it had been when I had visited her in
March, except that I noticed there was not much in her refrigerator. I had gathered
during our telephone conversations that she bought chicken and tuna salad at the
grocery store deli and that she and Joey shared these meals. She had no fruit, one
carton of juice, and several packages of cookies and crackers. I made large quantities
of food that we put in her freezer, and called a nearby tea shop and arranged to have
food delivered regularly to Mother. She discontinued this.
During Mother's 1998 Thanksgiving visit, one experience stands out. I asked
her to set the table and noticed, as I was dashing around, that she was moving the
silverware from place to place. After several minutes of circling around the table she
came into the kitchen and told me I had not given her enough forks. I looked at the
dining room table and saw seven forks at one place and an odd arrangement of knives
and spoons at the other places. The meaning of this odd silverware arrangement
flashed like a bomb going off in my mind: this is definitely cognitive decline!
I did not know what to make of her difficulty setting the table and was able to
overlook it because there were no other dramatic examples of decline. We had a good
time together and she enjoyed being a part of our family. My oldest son had invited a
girlfriend to join us who was very sensitive and caring with her. At this point I
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thought very little about Alzheimer's disease. I was familiar with jokes about
forgetfulness, and with my aunt's experience, but my mother seemed to be
functioning well enough, and since there had not been any resources that provided
guidance in caring for my aunt, I did not consider consulting with anyone about
Mother's symptoms. I focused on her immediate needs and ignored the significance
of her symptoms. I became engrossed in the challenge of shoring her up, hoping that
my support would stabilize her. I was aware during this time of a hovering anxiety
and dread that her decline would require me to choose between caring for her and
maintaining other commitments.
My mother's trips to and from San Francisco went very smoothly. Jack took
her to the airport in Orlando and picked her up when she returned, and I had arranged
for her to be met in Detroit with a wheelchair and taken to the gate for her connecting
flight. Because this routine had gone well, I did not foresee any reason to be
concerned about her trip to northern Michigan at Christmas. I had made arrangements
for her to stay in a motel complex near our cottage, where she had stayed for the last
8 years when she visited. Our cottage has only one large room downstairs and two
small bedrooms upstairs.
Mother and I were both excited that she was coming to Michigan for
Christmas. On the day of her flight I called to make sure she had been picked up by
Jack, and that her plane was on time. Her plane was supposed to land at 7:00 p.m. in
Traverse City. As I write about this now, I wonder how I could have arranged this
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without considering, and making fall-back plans, for the unexpected. I scheduled a
flight for a woman I knew was suffering from cognitive decline, at the height of the
Christmas rush, in an area of the country that is notorious for changeable and bad
weather in December.
At the time I thought I had covered the possibility of problems by arranging
for a wheelchair assist. The arrangement had worked for the past 2 years, first with
my aunt and then with my mother. This arrangement did not work on this trip.
Because of the holiday crowds, and because the plane to Traverse City was cancelled,
no wheelchair arrived to meet her in Detroit.
The horror of this reality—that my mother was on her own in the crowded
Detroit airport—did not hit me until we were told at the Traverse City airport that the
plane had been cancelled. I began a 4-hour search for my mother. There were many
people waiting for passengers on the cancelled flight and we began to collaborate, to
question the Traverse City airline representative, and to call the airline representative
at the Detroit airport. Two flights came in from Detroit, but my mother was not on
either of them and, after a great deal of haggling, I finally convinced an airline
representative to check his lists to see if my mother was on a flight list. He could not
find her name. I knew she had been on the flight into Detroit and assumed that she
was lost in the airport. As I was contemplating what action to take, a man who was
also waiting for a passenger on the cancelled flight told me he had heard that a group
of passengers scheduled for the cancelled flight had been put on a bus and which was
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within an hour of Traverse City. I felt a shred of hope, but also worry that this would
be a terrible trip for my mother because she had trouble sitting for long periods of
time.
My anxiety was very high, and I called the Detroit airport police. As I was
describing my mother, my husband appeared with the good news that the bus had just
arrived and my mother was on it. Words can not describe the relief I felt. When I
found Mother, she was with a woman she had sat with on the bus and she was in a
very happy mood. She and the woman had had a very good time together. The
holiday spirit and companionship seemed to have overcome any negative feelings
about the experience.
The first day of the visit went well. I had decorated a small tree and put it in
Mother's room along with food and drinks, and had asked the owners of the motel to
keep an eye out for her. I think she was exhausted and slept well that first night. I
picked her up the next morning and we spent the day decorating, baking, and getting
ready for my children, who were coming the following day.
There were some signs of agitation during the first day but they were not
intense. She wanted to help, and I would give her a job, but she either had difficulty
with it or got bored. I was very busy, and she seemed irritated when I was not sitting
with her. We made her traditional coffee cake together, and I set her up stringing
popcorn, which held her interest longer than anything else. When she was not
occupied, she paced, and wondered how Joey was doing. We called the kennel a
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couple of times to check on Joey. She also sorted through her purse looking for
things. I was focused on trying to keep her satisfied while getting ready for
Christmas. It was a relief to take her out to dinner. There was a holiday atmosphere,
and my husband and I focused our conversation on her, which seemed to calm her,
and she responded warmly.
The next day began a downhill spiral. Mother was agitated and irritable when
I picked her up in the morning and spent much of the day pacing. We called the
kennel to check on Joey several times. When my children arrived, she was glad to see
them, but her agitation and irritability made it difficult for them to relate to her. When
we got ready to go to church on Christmas Eve, I gave her a pair of warm, red gloves
because it was very cold outside, and she grumbled because they did not look good.
She grew more agitated and wanted to go home. She became increasingly disoriented
and angry with me for being so busy and bossy. Looking back, I realize that I should
have stayed at the motel with her and scaled back on Christmas preparations so that I
was available to sit with her. I think she felt disoriented at the motel and abandoned
by me, and she probably paced throughout the nights. I had not expected this behavior
and did not know it signaled serious cognitive impairment and need for full-time care.
The realization that she needed this kind of care dawned slowly over the next 6
months.
I did realize that she needed help on the flight home. I considered traveling
with her and called the airline to explain what had happened on her incoming flight
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and asked for suggestions about insuring her safety on her return trip. They
apologized for the failure of the wheelchair service and suggested that I pay for a
companion service that is often used to escort small children through an airport. I had
used this service once for a young friend who had visited us and it had worked well. I
arranged for this service and checked on the flights throughout her trip. Both flights
left on time, and I felt a huge relief when I called her at home and she answered.
In January, 1999,1 began to search for resources for Mother, and to strategize
with the bank manager about how to take over her finances. I found a cleaning
woman and a caregiving agency that were recommended by one of the bank
employees, and went to visit Mother in March with a long list of goals. I interviewed
the cleaning lady and arranged that she would come twice a week. I wanted to be sure
people were checking on Mother often. I also contracted with a caregiving agency for
a caregiver to bring a meal to her three times a week. She had refused to sign up for
Meals on Wheels. I also tried to figure out how much money Dudley had borrowed
from her. When I asked if I could see her checkbook, she walked into her bedroom,
there was silence for a few minutes, and she returned and said she could not find it.
She moved back and forth between being open and appreciative of my help
and irritated and resistant. She was evasive about the money Dudley had borrowed. I
began to talk to her about moving to California. She agreed that at some point she
would have to move, but she said she was not ready yet and she stated firmly that she
would not move without Joey. I left at the end of this visit in March convinced that
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she needed on-going support in order to live on her own, and aware that I needed to
begin plans to move her to California. She had willingly agreed to sign papers giving
me Power of Attorney and permission to write checks on her accounts. I had located
her check book and some of her check records and cancelled checks and had gathered
addresses and phone numbers for all of her creditors. I was acutely aware, at this
point, that I was totally responsible for her finances, health, and care. I was in a crisis
mode, trying to grasp the full picture of my responsibilities. There were moments
when I felt stunned and anxious about how I would meet her needs.
When I returned home, I spent the next 3 months very focused on assuming
control of her life. I went through the laborious process of contacting all of her
creditors, sending copies of the Power of Attorney, and changing the billing address
to my address in California. Most of the creditors were understanding and
cooperative. The exception was AT&T Credit. This credit card company, I
discovered, had authorized a telephone request from Dudley that he be allowed to use
her credit card to pay for repairs to his Volkswagen.
As I organized Mother's financial records, I discovered that checks written
directly to Dudley or for large sums of cash (my mother spent very little cash) totaled
over $20,000.1 could trace her decline in her check records. In 1991 her numbers
were clear and her math was accurate. During 1997 and into 1998 the checks showed
an inconsistent but progressive decline in legibility and accuracy.

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During these months I was also working with her doctor's office staff, who
were supportive of my concerns. I made several appointments during these months
asking them to assess my mother and advise me about her needs. I now have all of my
mother's health records, and the notes on these appointments tell of a well-
intentioned but tentative response to my mother. On January 23, 1999, the doctor
noted, "daughter made appointment Rt. Knee sore. Pt. unsure why she is here. Living
by herself. Still has aneurism. Pt. hesitant and confused. Dementia?" On March 29,
1999, the doctor administered a Mini-Mental Status test and recorded the following
notes in my mother's chart: "0 complaints. Pt. reports her daughter has noticed a
change in pt. and is concerned. Pt. notes she feels fine. Orders: CT scan, lab as above;
FW after results; R/O Dementia."
As I read these notes I realize that assessment of her symptoms was made
difficult because of the ambiguity in the symptoms and because Mother lived alone
and no one was observing her daily life. The next entry in my mother's medical chart
on April 9, 1999, indicates reason for concern about her need for care. The nurse
recorded the following anecdote:
At 5:30 Marjorie presented stating she had an "appt" to test for aneurism. I
explained that today she only needed refills and I wrote down her name, the
name of the medication, and the name of the pharmacy. I asked if she knew
where Eckerd's was, she stated she did, but pointed in the wrong direction. I
called her daughter after this to discuss, but she was not home. I left a msg on
her machine.
At this point my mother's healthcare professionals and I should have taken
action to insure that she was not driving. As Alzheimer's disease has become better
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understood, the healthcare profession has become more aware of the need for
intervention with patients who have the disease. A diagnosis of Alzheimer's disease
is now included in the list of conditions that must be reported to the DMV if the
patient diagnosed is still driving.
From March to July, as I struggled to assess my mother's needs and find home
care, I was shifting from ambivalence about moving her—concern for her
independence as well as my own—to the realization that it would be much better for
both of us if she lived near me. I was talking to her on the telephone almost every day
at this point. Most of the time she made sense but was confused. For example, during
one call, she told me she was freezing and that the windows were frosty. I finally
figured out that she had turned the air-conditioning up. She could not follow my
directions about how to turn it down, so I told her to open the doors and windows and
I called the manger of the homecare company I had employed. The manager was very
competent and straightforward in responding to my concerns. I explained that my
mother needed daily care and that the caregivers who had been coming to check on
her and bring meals to her spent their time eating their own lunches and watching TV.
The manager apologized and told me she was having difficulty finding good
caregivers but she promised she would personally assess my mother's needs and try
to find competent caregivers. She agreed to personally help my mother pack for our
summer trip, get her on the plane, and pick her up when she returned. Based on her
agreement to help and the fact that hiring a companion service in Detroit had worked
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very well on the return trip at Christmas, I planned to have my mother fly to Traverse
City where I would meet her and we would spend a week together.
At this point I was very clear that the question was not whether to move her to
California, but when. I now wanted to bring her to California to live in her own place
where she had support for her needs, and was near enough to me so that I could
manage her affairs and have a close relationship with her. I began to gather
information on assisted living facilities near my home and I looked forward to
spending a week with her, with the goal of talking her into moving to California.
It was a very difficult week. Mother emerged from the plane looking irritated,
wearing a mismatched outfit, wiglet disheveled. She spent much of the time that we
were in the car looking in the visor mirror and arranging her wiglet. Her conversation
was irrational at times, and she was having trouble finding words. She would grow
silent and dejected when this happened. She also spent a great deal of time digging
through her purse. I had planned that we would do things she enjoyed. I bought a flat
of pansies and asked her if she would help me plant them. She just stared at me. I
went inside to get a watering can and when I returned she had picked the blossoms off
all the plants and was holding them in her hand. I took her shopping for clothes and
noticed, at the shoe shop, that her toenails hadn't been trimmed in a long time. In one
shop she tried on a sweater and liked it. I said we would get it for her and I told her I
liked it, too, and wanted to try it on. She flew into a rage and said, "No, Audrey, it's
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my sweater." She was confusing me with her sister, Audrey. She stormed out of the
shop and I had to run after her and plead with her to come back.
The days grew increasingly difficult. She was disoriented and got up in the
night and paced. She was irritated by almost everything I did and said and, by mid-
week, had begun to say she wanted to go home. At one point I grew irritable and
responded testily that she would have to wait 2 days to go home. She responded,
"Kris, do you hate me this much, to force me to stay here?" I tried to explain that I
did not hate her, I loved her and wanted to spend time with her. On the last day of her
visit it rained, and I spent the afternoon mending and packing her clothes and
trimming her nails. She was very agitated during this time. In the evening we had a
glass of wine, and the wine seemed to relax her. She grew warm and we were able to
have a conversation. I asked her if she would consider moving to California. Based on
the way she had behaved during this visit, I expected her to say no, but she surprised
me. She said she would only move if Joey could come too. That night she came into
my room at 2:00 a.m., dressed, and said she was ready to go home. I walked her back
to her room and talked her into lying down to rest, but she was soon up again, and
paced for the rest of the night. I made the following entry in my journal after her
departure:
Silence all the way to the airport—when I asked what she was thinking—
"nothing"—I chose not to make conversation. She was irritable and out of it
right up to the end—confused about tickets, where driver's license was—
irritable with me—I felt a great yearning for relationship with her—I hear her
plane revving up—feel intense sadness. Separation pangs? Remorse? Guilt—
that when she was able to be close I wasn't available? Did I fail her,
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disappoint her? Probably wouldn't have been good for either of us if our
needs had coincided—symbiosis? Wanting to savor—hold on to—the good
things she does and is—her beauty, dignified carriage, insights, intellect,
humor—great reluctance to strip her bed—wanting to hold on—she brings a
feminine presence into my life. She's off—wanted out badly—why did I want
to hold on? Her anxiety profound—only thing that grounded her was fixing
her hair—I feel guilt that I put her in a situation where she felt trapped—it
must have been hell for her—and now what? How to help her—meet her
needs. She seemed open to moving to California as long as Joey is with her—
maybe things won't be as bad as I fear. My greatest fear—I force her into a
home—her money goes to pay for a place she hates and she spends her last
years hating me.
I had asked the manager of the caregivers to call me and let me know that my
mother had arrived home safely. The manager had taken Joey to the kennel and had
agreed to pick him up after she picked up my mother at the airport. I returned to my
cottage late in the afternoon and retrieved the following message: "Your mother and
Joey are home. It's time to move your mother to California, and my prayers are with
This was like a voice from the universe responding to my question of when to
move her. Now. The manager agreed to provide full-time care while I made
arrangements to move Mother. We were in constant communication during the
coming days. She was one of the many generous people who helped me during my
mother's decline.
One of the first challenges the manager and I faced was how to keep Mother
from driving. After considering a number of possibilities, we decided that the
manager's husband would disconnect the battery. After this had been done, I called
and Mother reported that something was wrong with her car. I told her I was coming
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to visit and would see about having it fixed. I was calling her one or two times a day
and talking to her about moving to California. At first we talked about whether she
wanted to come but, after several days, she began to sound very agitated and wanted
to know when I was coming. It got to the point that when I called, she answered
immediately. I felt bad that she had to go through this period of feeling alone and
anxious. The only good that came from this time was that she was no longer resistant
to moving to California.
Meanwhile I was very busy arranging for her move. I found an apartment that
was part of an independent living complex where dogs were accepted and meals and a
cleaning service were provided. I began to look forward to having her close so that
we could cook together, go to movies, take walks—and Joey would be with her. I
thought having Joey and having my regular support would keep her from being
agitated and disoriented, as she had been in Northport. At this point I was focused on
assessing and meeting her needs so that she would return to a higher level of
functioning. I believed that the confusion and irritability would decrease once she had
the support she needed.
Caregiving in California: Independent Living, Assisted Living, Alzheimer's Facility
My family and I moved furniture into the apartment I had rented for my
mother, and my husband traveled with me to Cape Canaveral to pack my mother's
things and move her. We flew to Orlando, rented a van, and spent the next few days
sorting and packing. It was the first of several times I would sort her belongings—one
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pile to be delivered to Goodwill, one pile to the dump, and one pile to keep. It was hot
and muggy during these days and my mother was agitated and pacing. At first I tried
to include her in the process, but realized that involving her slowed the process and
she was not able to make rational decisions. She was irritable with us during the day,
but we took her to dinner each evening and she relaxed and was almost like her old
self. At one point during the packing my husband asked her if she had used her
microwave (we had given her a microwave several years ago). She replied, "Why, no,
I used my sink."
We traveled to Orlando and spent the night in a hotel that opened into the
airport. Mother was extremely irritable while we were at the hotel. She insisted on
holding Joey's leash, telling me he was her dog, not mine. At one point she let go of
Joey's leash and he headed for the traffic, but stopped when we called him. She
continued to be disoriented after we arrived in California and angry with me. I spent
the first several days and nights with her trying to help her get settled into a routine.
She was agitated and implacable, as she had been in Northport. Nothing I did seemed
to alleviate her agitation.
I moved her into the apartment at the beginning of September, 1999, and it
was a month of growing desperation for both Mother and me as I finally faced the
level of her deterioration and accepted the diagnosis of Alzheimer's disease. I spent
the second week of September trying to get her into a routine. I put Joey's dog food in
containers for her to put out for him and she didn't do it. I went to meals with her and
tried to help her connect with other residents. One evening I arrived after she had
gone to dinner and joined her at a table with two very kind fellow residents. I sat
down, introduced myself, and noticed that Mother had used red lipstick for eyebrow
pencil. She cut her bread with a knife and fork and used a spoon for her meatloaf. Our
dinner companions, whom I hoped might be potential friends, were looking at my
mother with quizzical expressions. I noticed that Mother was wearing the same
clothes everyday and realized she was not getting into her nightgown at night. So, I
arrived early in the morning to escort her in for breakfast, feed and walk Joey, and
encourage her to take part in the activities. I returned in the evening and to walk Joey
and get mother ready for bed. The first night I did this, I found that she was wearing
three bras. I was growing increasingly tired and frustrated, and she was growing
increasingly agitated and irritable with me.
There was, thankfully, a turning point. On September 1 0 , 1 arrived in the
evening and she was complaining about pains in her abdomen. All I could think of
was that I wanted help with her. I took her directly to my car and drove her to the
emergency room. They admitted her and during the exam, she began to have violent
attacks of vomiting and diarrhea. The smell was intense, and both the doctor and I
recoiled. I looked at her and she was so miserable and bereft I put my arms around
her and hugged her and began to talk soothingly to her. She responded warmly. I took
her to my home and cared for her for several days while she recovered from what I
think was either an intestinal illness or extreme anxiety.

While she was recovering, she was loving and appreciative of my care. I
realized that she needed more support. I spoke with the manger of the apartment
complex and asked for suggestions about how I could provide more care. They
suggested dog walkers and home health caregivers but also expressed concern that
my mother and Joey might not be suitable for independent living. They asked if I
thought maybe my mother had Alzheimer's disease. Incredible but true, I responded
that I did not think she had Alzheimer's disease. I assured them that she would
stabilize once she was in a routine.
The next week was a mixture of warm times between my mother and me and
intense, anxious attempts to find daily support for her and Joey. I took them for a
walk one lovely, fall afternoon and then we had dinner at an outdoor cafe where Joey
could be with us. She looked at me and said, "You're a real blessing to me, Kris."
I brought her to my house on weekends and included her in our family activities. One
Sunday I was preparing a birthday dinner for one of my sons, and I set her up so that
she could frost the top layer of his cake. I turned away to do something and when I
turned back, she had eaten half of the layer.
I hired a dog walker and caregivers to spend time with Mother during the
days. The caregivers were unreliable. It seemed that the harder I tried to stabilize her,
the more unstable she became. At least things were warm between us. I was back in
the role of advisor and helper, not boss and critic. I think she recognized on some
level that I loved her and was trying to help her. As my efforts to stabilize her failed, I
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felt a growing tide of fear about how I would care for her and Joey. If I had been
living alone, I probably would have moved her into my home, although I am not sure
that it would have been the best solution for her, me, or our relationship. The fact
was, I lived with my husband, our sons came home frequently, and our house had
several levels. My husband was very supportive but made it clear he did not want to
turn our home into a care facility. I felt his decision was reasonable.
A turning point came when I arrived one morning to find Mother's apartment
empty. I ran through the halls looking for her and Joey, hoping they had not wandered
outside. I heard the jingle of Joey's collar and finally discovered my mother, trying to
clean up a pile Joey had made with her bare hands. I spent the next 3 days driving
from one assisted living facility to another, covering three counties. I was determined
to find a place that would accept Joey. Finally, I found a lovely place in the heart of
Napa Valley that would accept my mother as well as Joey. It was a new facility that
had opened in August.
The facility's nurse came to Mother's apartment on a sunny morning to
interview her. The nurse was a sensitive, caring woman who put my mother at ease.
She administered the Mini-Mental Status exam in a way that was not at all
intimidating or offensive. There was a playful tone as she asked my mother the name
of the season. My mother looked reflective and I gave her hints: "It's the season when
Daddy watched football games." She laughed and her eyes brightened at the mention
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of my father watching football games. She responded by saying, "Why are you asking
me what season we're in? I think you know the answer."
After the interview I called the nurse to finalize my mother's move to a place
I'll call the Vineyards. The nurse raised the question of which would be better, an
apartment in the Alzheimer's wing, or an apartment in the assisted living wing. Still
in denial, I assured her that with the level of care provided in their assisted living
apartments I was sure my mother would settle in nicely.
Again my family and I packed up mother's belongings and moved her into a
lovely apartment with a gas fireplace. I stayed with her for a few days to help her get
settled, and things grew a little testy between us during this time. I was trying to get
her into a routine of going to the dining room, taking Joey to the right part of the
enclosed garden for walks, and giving him the containers of food I had prepared for
him. She was confused and resisted most of my suggestions. On the night before I left
her and returned home, we had a fire in the fireplace, popcorn, and watched the
musical "Singing in the Rain." She knew every word of each song. The next morning
we had breakfast in the dining room and I expressed concern about leaving. She
spoke calmly and, looking me right in the eye, said, "No, Kris, you go. I'll be fine." I
was touched by the fact that she encouraged me to go back to my life and inspired by
her courage at facing life in a totally unfamiliar place. The staff had been very caring
during the days I spent with Mother, and she seemed calm and content as long as Joey
was with her. I drove out of the parking lot of The Vineyards and headed toward the
highway. This was a trip I would make many times in the coming years.
Three days after I returned home, the nurse called to tell me they had moved
my mother to the Alzheimer's wing. The nurse described many examples of Mother's
confusion and disorientation and felt she would be safer and more comfortable in an
apartment in the Alzheimer's wing. She would be the second resident in the
Alzheimer's wing, and Joey would be allowed to stay with her. I felt relieved that
Joey could stay, but stunned by the fact that the question marks and rule/outs had
been removed and my mother's diagnosis was Alzheimer's disease. I was forced to
look at the reality of Alzheimer's disease and face the fact that there was nothing I
could do to bring her back or stabilize her. She had a progressive disease that would
cause steady decline and death in an indeterminate number of years.
Reflection
It was a revealing and painful experience to write a narrative description of
the years leading to my mother's diagnosis of Alzheimer's disease. With the
knowledge of hindsight, based in part on the testimony of those in first-stage
Alzheimer's disease, it seems reasonable to conclude that her symptoms of agitation
and irritability were manifestations of fear and despair as she experienced cognitive
deficits and humiliation that she was being told what to do by me. As I reflect on my
relationship with my mother during the early stage of Alzheimer's disease, I
recognize certain core issues for me in this experience. There was the difficulty of
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assessing the symptoms of agitation and irritability because they were ambiguous and
erratic; there was the difficulty of assessing what level of care was needed and of
knowing how to respond to the symptoms in a sensitive, helpful manner; and there
was my denial of the severity of the symptoms.
My denial was influenced by a number of factors ranging from a limited
understanding of and negative attitude toward dementia and reluctance to face the fact
that my mother was suffering from Alzheimer's disease, to a lifelong struggle with
her expectations of me. For some reason I could accept the fact that my aunt had
Alzheimer's disease, but I could not fathom my mother succumbing to dementia. I
think on some level I believed my mother was indomitable—she would always be
there. Another factor was my guilt for not giving her more support. My fantasy that I
could stabilize her if I gave her enough support suggests the unrealistic, omnipotent
attitude characteristic of the thinking of young children. There was also a strong
component of reluctance to assume total responsibility for her. These factors kept me
from recognizing and acknowledging the significance and severity of her symptoms.
In retrospect I wish I had tried to persuade her to move in the summer of
1997, after my aunt died. I think she was coherent enough that summer that she might
have adapted to, and enjoyed, living near me. I could have monitored her decline
more closely, provided more support, and possibly spared her some of the anxiety of
being alone as she began to decline. There are questions regarding this plan that will
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never be answered. Would she have agreed to move in 1997, and how would moving
her then have affected her life and mine?
In every case of Alzheimer's disease, the relationship between the person with
the disease and family members, as well as the personality and history of the person
with the disease, always play a significant role in the provision of care. In my
mother's case, the fact that she had suffered from depression most of her life, that she
was devoted to Joey and lived a continent away from me, that she became irritable
and unwilling to allow me to take over her finances, and that I was ambivalent about
assuming responsibility for her all had an impact on the provision of care for her. It
was not until her symptoms were very obvious that it became clear what level of care
she needed. Unfortunately, by that time she was experiencing intense agitation and
disorientation.
When I think of my mother's experience of cognitive decline, I recall Thomas
DeBaggio's (2002) description of how he felt during the early stage of Alzheimer's
disease:
Night after night strange dreams inhabit my sleep, nights of lost wandering,
terror, fear and mysterious occurrences. These are dreams of confusion, deep
dreadful dreams I categorize as Alzheimer's experiences. In them the man I
see is walking, wandering aimlessly, lost and fearful. I woke up screaming,
fearing loss of control, hiccupping with fear, breathless with emotion. . . . It is
lonely here waiting for memory to stop and I am afraid and tired. Hug me,
Joyce, and then let me sleep, (pp. 193, 207)
My mother had no one to hold her during this phase of her illness.
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DeBaggio's vivid depiction of the feelings, thoughts, and dreams motivating
his symptoms of screaming and wandering provides authoritative data about the inner
experience of early-stage Alzheimer's disease. Understanding the inner experience is
the key to responding effectively to the psychological and spiritual needs of those
who have Alzheimer's disease. My hypothesis in using the archetypal approach to
assess and treat this disease is that the misery can be lessened by caregivers trained to
understand how inner dynamics motivate outer symptoms in both those who have
Alzheimer's disease and also in their caregivers.
Drawing on the archetypal approach, using Persephone's myth as an
interpretive means of understanding the psychological dynamics motivating the
aimless wandering and screaming, I see loss of self-control, loss of connection with
the human world, and desperate attempts to reestablish control and connection as an
enactment of Persephone's descent into the underworld. Hillman (1975) explains that
the symptoms hold the story of our relationship with a particular god or archetypal
force at a particular time (p. 35). DeBaggio's description of screaming and
hiccupping with fear tells of a struggle with Hades—an otherworldly force. I think
my mother was experiencing a similar struggle, a sense of loss and desperation, when
she paced all through the last night of our vacation in Northport, and pleaded with me
to let her go home. I did not understand the inner dynamics motivating her strange
behavior.
The work of Hospice physician Michael Kearney, discussed in Chapter 1,
emphasizes the value of caregivers who understand the inner experience of their
patients and find ways to address what he calls soul pain, psychological and spiritual
suffering. He relates that reducing soul pain, in some cases, reduces the need for pain
medication. Kearney (1997) explains that one is only able to respond to soul pain by
doing depth work and describes the qualities of such a caregiver: a companion for
those on a journey into inner depths "who was not afraid of the dark, someone who
knew from lived experience what it meant to step into the unknown . . . to live with
questions and be committed to their own inner journey in depth" (p. 142).
During the early stage of Mother's Alzheimer's disease, I struggled with the
activation of a strong resistance to being pulled into the inner depths of her situation.
At the same time, I was a psychotherapist and a student in a depth psychology
program, both of which required that I be committed to an exploration of my own
unconscious depths. My experiences in the underworld had been dominated by a
struggle with the powerful mother archetype and the dilemma of how to have a
relationship with this inner force without either being devoured by her, or devaluing,
marginalizing, or rejecting her. I confronted this dilemma continually during my
mother's decline, and was heartened when I read Kearney's (1997) description of the
process of depth work, based on metaphors from Hillman and from the poetry of D.
H. Lawrence:
I can only build my ship of death of soul materials, and so to build I must
descend, again and again, becoming, as I do so, more and more used to being
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in the dark. On completion of the task, however, I am not only less frightened
of the dark, I also have a "ship of death." I have a little vessel to carry that in
me which does not die onto the waters of an unknown ocean, (p. 153)
It was a relief to think that it was an on-going process, not a one-time descent, and
that in the course of the process I would become used to, less afraid of, the dark.
My inner work had provided a vague map of the underworld and what felt like
a flimsy raft, certainly not a ship, of death. I was aware of the suffering of my soul—
of unconscious dynamics related to what I have not valued, feared, repressed. I was
also aware of the importance of depth work, but my depth work had been
characterized by suffering and then looking at my soul pain from the safety of dry
land—intellectual analysis. My experience of the process of descent and return was
inhibited by wariness, and my faith in the advisability of surrendering to the
darkness—joining Persephone—was fraught with the fear that I would not return
from the darkness.
To address this fear, I sought guidance from many authors, including Michael
Kearney, Dante, T. S. Eliot, and Oliver Sacks, all of whom offer a characterization of
the ineffable experience of descent to the underworld. Kearney (1997) discusses the
challenges of depth work, drawing from the Tibetan Book of the Dead, the medieval
tradition of ars moriendi, and ancient initiation rituals as resources for understanding
the descent to and return from the depths of the underworld. Using myth, poetry, and
his own experience, Kearney points out that the mythic nekyia is a recurring pattern
in human experience—in my experience. The following poem, offered by Kearney as

an image of depth work, describes the call to the depths that I was experiencing as I
became my mother's caregiver:
I have this that I must do

One day: overdraw on my balance
Of air, and breaking the surface
Of water go down into the green
Darkness to search for the door
To myself in dumbness and blindness
And uproar of scared blood
At the eardrums. There are no signposts
There but bones of the dead
Conger, no light but the pale
Phosphorus, where the slow corpses
Swag. I must go down with the poor
Purse of my body and buy courage,
Paying for it with the coins of my breath, (p. 143)
In most of my experiences of the underworld I had not gone by choice and I had not
paid much attention to the pale phosphorus or slow corpses. I had focused on how to
get out and then analyzed the descent to discern the meaning and clues about how to
prevent another descent.
As a caregiver I was entering a world of slow corpses. I experienced the
descent into the underworld of my mother's situation regularly, and gradually began
to learn an attitude of humility in these experiences. Kearney (1997) points out that
the Eleusinian initiation is enacted in the life of contemporary caregivers when they
commit to their own inner journey and learn to recognize potential moments of
initiation: moments when one is called to the underworld through the "unavoidable
encounters with incurable physical or emotional suffering which life brings our way"
(p. 172). I learned to give up control during certain descents, and to surrender to,
rather than defend against, Mother's situation. Kearney draws from Hillman in his
emphasis on the crucial point in initiation when the initiates choose an attitude of
humility. This choice affects how they see and respond to events; it is a shift from the
mode of active controlling to the mode of passive acceptance—a choice to trust and
give conscious attention to the depths of an experience.
I found validation for my experience of inner descent in Oliver Sacks's (1994)
articulate description of the inner darkness (abyss) he confronted when he realized
that his brain could not find his injured leg, and medical science could do nothing to
solve the problem. He turned to art, mystics, metaphysics, and Scripture:
Faced with a reality which reason could not solve, I turned to art and religion
for comfort. It was these, and these only that could call through the night,
could communicate, could make sense, make more intelligible—more
tolerable. .. .1 turned to the Bible—especially the Psalms—because these
continuously spoke of such things, and of a return, mysteriously, to light and
life once again. I turned to them as descriptions, as case-histories, in a way, as
a sort of prayer or invocation. And I turned to the mystics the Metaphysical
poets too for they also offered both formulation and hope—poetic, esthetic,
metaphoric, symbolic, (pp. 89-90)
Sacks explained that during his descent into inner darkness he had to
relinquish activity and allow passivity, to "Be patient—endure. . . . Wait, be still. . . .
Do nothing, don't think!" He quotes T. S. Eliot's description of the mode of the
initiate during descent: "Be still, and wait without hope/ For hope would be hope for
the wrong thing" (1994, p. 87).
I first used the term underworld experience in casual conversations, not with
the intention of psychological analysis. I would describe the irrational quality of my

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mother's situation by saying that it was an underworld experience, as have other
authors cited. I believe we were reaching into archaic myths to find an image that
resembles the experience of Alzheimer's disease. When I first used underworld, I did
not realize the full significance of this metaphor.
The story of Mother's abduction to the underworld was beginning to unfold
during the years leading to her diagnosis: a compelling force was taking her to a
strange place where real becomes surreal—a mysterious experience in DeBaggio's
words. Hillman describes the shift to the underworld as a change in soul—psychic
change when we move from human life to a deeper more "unreal" reality (p. 131).
Sacks (1994) describes it as a journey of the soul which "started as torment, but
turned into patience; started in hell, but became a purgatorial dark night; humbled me,
horribly, took away hope but then, sweetly—gently, returned it to me a thousandfold,
transformed" (p. 89). As my mother's primary caregiver, I was being called to join
her as her companion on a journey to the underworld.
From an archetypal perspective, I recognize the pattern of Persephone's
descent and return in my mother's disappearance into irrational behavior and glazed
eyes and her return to connection with me. Persephone's descent also comes to life in
Thomas DeBaggio's (2002) account of the horror of his inner experience (pp. 193,
207). The terror of his descent can be explained in psychological terms as awareness
of the ego's loss of self-control. The consequent disorientation reflected in his
experiences suggests greater exposure and vulnerability to unconscious contents than

is experienced by healthy people. DeBaggio was losing the rational capacity to
organize, interpret, or otherwise deal with primary process contents, as well as the
integrity of his psychological foundation anchored in life experience and human
relationships (Hillman, 1979, p. 48). Treatment for those with Alzheimer's disease
requires an understanding of how loss of cognitive capacity affects inner experience
and how caregivers can provide auxiliary ego support. The archetypal interpretation
of DeBaggio's symptoms, that the terror is existential fear when seized by Hades, an
otherworldly force, is a complement to the use of psychological concepts. The
concepts engage the rational mind; the archetypal technique of mythologizing
engages feelings and imagination.
The Persephone myth and the Alzheimer's disease experience become
mutually enlightening perspectives. My interaction with Mother and the stories of
those in the first stage of Alzheimer's disease bring to life the dynamics of
Persephone's disappearance and return, and the Persephone myth offers clues about
the significance of the experience of Alzheimer's disease. DeBaggio's images of lost
wandering and deep dreadful dreams resemble the following description of descent
and transformation in the Eleusinian ritual:
At the moment of death, writes Plutarch, the spirit receives an impression

which is very similar to that experienced at initiation into the Mysteries. It is
first a passage through the unknown, with difficult, circuitous routes in the
dark, along an endless road. Before the end is reached, fear is at its peak, one
trembles, one shivers with fear, a cold sweat breaks out all over. But then
suddenly a wonderful light appears before one's eyes; one is transported to
delightful places and meadows where song and dance fill the air, where one
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hears sacred words and witnesses mystical appearances. (D'Alviella, 1981,

pp. 20-21)
The descent comes as a result of Hades' seizure. Transformation comes as a
result of establishing a relationship with Hades and, according to Michael Meade
(1995), transformation in initiation rituals requires the containment provided by ritual
and the support of a wise guide (p. xxi). To implement Meade's insights in the
treatment of people like DeBaggio, who are experiencing descent to the underworld,
there is the need for caregivers, like those described by Kearney, who have
knowledge of the mysterious relationship between descent and transformation, and
can guide and support healing and transformation on the journey into the unknown.
During the early stage of Mother's Alzheimer's disease, I responded to her
descent and return with not only shock, sadness, frustration, and denial, but also with
a determination to maintain a relationship with her. It became increasingly
challenging to find her—to understand her symptoms and to find ways to connect
with her. My success in connecting with her depended to a great extent on my attitude
toward her—on which hat, or style of consciousness, I was wearing. When I
approached her from an upperworld perspective—controlling like Zeus, angry and
resentful like Demeter, detached like Helios—she responded with agitation and
irritation or withdrew behind a glazed stare. When I allowed myself to be carried by
Hermes, to the depths of an experience, I moved to a feeling connection and, at times,
to a timeless dimension of being with her. This movement was characterized by
absorption in the objective experience of the present moment which became a point
of departure expanding into the psychological and spiritual dimensions of inner life.
These timeless moments began with a physical act, which opened into a subjective
experience of feelings and meaning, a movement from linear progression to timeless
space like the composition of a painting.
When I looked at Mother in the midst of attacks of vomiting and diarrhea, I
was drawn to hold her and be with her in her world. The controlling mode of Zeus
and Demeter's resentment that a loved one has been abducted out of the everyday
world, fell away in this moment of connection in the underworld of disorientation,
loss of control and immersion in the upsurge of vomit and feces—decomposition. It
was a timeless moment free of outerworld agendas—a surrender to the underworld at
the heart of the outerworld—a shift to Persephone's passive, still mode.
In terms of the Eleusinian initiation, this is the point in the ritual when the
initiate can choose to defend against an experience of the underworld or embrace it.
Kearney (1997) described this moment as "emotional and physical rather than
intellectual," and as something that "touches one in the pit of the stomach" (p. 177).
When I made the choice to hold Mother, the events surrounding us continued in a
linear progression—the nurse began to clean up the mess. I was aware of this
progression, but it was peripheral to the experience of holding Mother—an
experience that expanded into deep feeling and profound meaning. It was a
transporting experience.
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I joined Mother in this timeless moment and became engaged in her journey
into the depths. I would be taught the lessons of the Eleusinian ritual many times
during the coming years. The lessons involved a continual pattern of struggle with
conflicting priorities and descent into the underworld of her situation. The struggle
with conflicting priorities was a replay of lifelong issues with my mother. These
issues included not only a wariness of her moods and needs and a fear that opening to
closeness with her meant loss of autonomy, but also conflict between the values she
had taught by example—homemaking and caregiving, and those she had advocated as
being more valuable than homemaking and caregiving—intellectual achievement and
a professional career. I had followed both her advocation and her example—a path
fraught with great inner conflict. I had spent my adult life committed to homemaking
and caregiving, while seeking advanced college degrees and developing a modest
career in my spare time. I felt negative judgment from both inner and outer critics for
being a stay-at-home mother not a working mother. I was acutely aware of the
feminist and socioeconomic issues inherent in the controversy between stay-at-home
mothers and working mothers, and the low regard Western culture shows for the work
of caregiving. I heard these critics saying that a woman who is hard-working, bright,
and competent can manage caregiving as well as a professional career, and I struggled
with attitudes that dismiss homemakers and caregivers as indulgent or incapable of
doing anything more challenging or productive.

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These conflicting priorities of intellectual and professional achievement
versus caregiving fell away in the moment that I held my mother. This was a turning
point in our relationship, but it sharpened the horns of the dilemma of how to honor
the conflicting priorities—how to join Mother on her journey, but not neglect my
commitments in other areas of my life. Kearney offered guidance and the following
validation:
While the deep contains riches, treasures, and the potential for healing we
must not forget that it is truly a place of power whose lower reaches are
unfathomable. What maps we have of the underworld are at best rudimentary.
There is a danger of getting lost in this place, of being devoured by its
monsters or of being possessed by its energies, in short of entering the depths
all right, but then failing to make the return part of the journey. The risks of
being overwhelmed by the deep or unconscious mind are greatest for those
who fail to honor this ancient place of power, for example by denying its very
existence or by naively setting out to explore it alone. The risks are least for
those who set out consciously and respectfully and, like the aborigine initiate,
do so in the presence of an elder guide, one who knows the path from walking
it smooth. (1997, pp. 148-149)
As my mother moved through the stages of Alzheimer's disease, I became
engaged with her struggle and came to see it as an existential experience occurring on
a psychological and spiritual as well as physical level. Using the lens of the
Persephone myth to interpret the subjective experience of Alzheimer's disease
enables me to address Oliver Sacks's question about the symbolic significance of this
disease and Carl Jung's speculation that the prospective motivation of symptoms may
be a yearning for completeness, rebirth, harmony, and purification that underlie
human behavior. Hillman (1979) speaks to these goals in his comment that the
symptom of forgetting, a loss of connection with the human world, might be in

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service to a deeper purpose, to a movement out of ego into psyche (pp. 154-155). I
both witnessed and experienced the pattern of descent and return, of loss and
recovery, during my mother's decline. I lived in the tension between the timeless
world of Alzheimer's disease and the hectic pace of the ordinary world.
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CHAPTER 4
MID-STAGE ALZHEIMER'S DISEASE
Narrative
Introduction
This chapter focuses on my mother's progression through mid-stage
Alzheimer's disease. As in Chapter 3, the Narrative recounts events as seen through
my eyes and heuristic interpretations of these events—assessments and speculation
based on self-search and intuition. The Reflection at the end of this chapter continues
the work of using an archetypal perspective to analyze the data of the Narrative.
Moving Into the World of Alzheimer's Disease
Moving into an apartment in an Alzheimer's facility is a literal and figurative
transition into the world of Alzheimer's, perhaps symbolized by the locked door that
separates the world of Alzheimer's from the ordinary world. The residents in the
Alzheimer's world are not capable of maintaining themselves in the ordinary world,
and the ordinary world has no way of accommodating those with Alzheimer's
disease. This move is one of those junctures in life where one leaves behind the
familiar and is forced to adapt to a new way of life. My mother was moved from an
apartment in the assisted living wing of the Vineyards into a model apartment used as
a display in the Alzheimer's wing, until I arrived to move her furniture into her own
apartment. I found her there confused and suffering from diarrhea and a fever. The
staff was very sensitive and supportive in greeting me and explained that she had
been unable to dress herself, care for Joey, or find her way around the assisted living
wing. At that point I finally faced the fact that my mother had Alzheimer's disease,
and dissolved in tears.
As I sat by Mother's bed and tried to get her to sip tea and broth, I felt very
grateful that I had this facility and staff to support me in caring for her. I had been
feeling increasingly daunted by her needs and increasingly lonely in the realization
that, although I had a very supportive family, I was the one who had sole
responsibility for my mother. It was a relief that someone else was taking care of food
and housekeeping chores, and overseeing health problems.
During these first hours of reconciling myself to my mother's diagnosis, I
sorted through many feelings and thoughts that simmered in my mind: grief, anxiety
about what lay ahead, guilt that I was now a daughter who had institutionalized her
elderly mother, anguish that I could not fix my mother's problems, and plans for
making the best of the situation. I faced my own negative attitude toward cognitive
decline, realizing that I would not have been as incredulous or as appalled if I'd been
told my mother had cancer.
I began to take stock of my resources and goals. My central goals were to find
a way to maintain a relationship with my mother and to assess and find ways to meet
her needs. I began to think about her as my child, and to think of her world—the
facility where she would live—as a community that I would become a part of in the
way that I had become a part of my children's schools and social community. My
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family helped move my mother's belongings into a pleasant apartment in The
Neighborhood—the Alzheimer's wing of The Vineyards.
The Vineyards was a new, attractively decorated facility with a friendly, open
atmosphere when my mother moved in. Attention had been paid to designing rooms
and decor that would help residents feel comfortable and as stimulated and
independent as possible. The Neighborhood opens into a lovely, enclosed garden with
a circular path and benches. The staff was well educated about Alzheimer's disease,
and trained to provide a safe, caring environment. The staff nurse oversaw medication
and health issues; the chef invited the residents to teach him their favorite recipes; and
the activities director planned outings, seasonal celebrations, entertainment, and
interactions with community groups—projects with pre-school through high school
students. The Alzheimer's residents were included as much as possible in the
activities, although they dined separately in The Neighborhood.
The entrance to The Neighborhood had a locked door with windows. The door
opened into a spacious, well-lighted hall. At the end of the hall there was a large
window through which the kitchen and dining area could be seen; there was a short
hall on the left leading into a living room, and a long hall on the right with doors on
either side opening to small private and semiprivate apartments each with kitchen
area, bathroom, and a living/sleeping room. Because there was only one resident in
The Neighborhood when my mother was transferred, I was offered a choice from the
remaining apartments. I chose a semiprivate apartment because of financial concerns,

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but worried about whether Mother would be upset by having to share a bathroom, and
whether Joey would be a problem when someone moved into the room next to
mother's. As it turned out, by the time someone moved in to the other room, Mother
had declined to a point where she did not seem cognizant of the fact that someone
was sharing her bathroom.
Each time I moved my mother, it was a process of sorting through her
belongings and discarding what was superfluous. It was a process that forced me to
acknowledge her decline. I removed items that caused clutter and were no longer
meaningful, and kept a table she liked, a small book rack my father had made,
jewelry, and framed family pictures. I enjoyed decorating her room with things that
brought her pleasure. Probably the most important item was the CD player. Music, I
believe, nurtured her throughout her decline.
Mother's room was long and narrow, with large windows across one end that
looked into a garden courtyard with a fountain. I set up a sitting area with a small
couch that had a fold-out futon where I slept when I stayed with her. At the other end
of the room was a double bed, dresser, mirror, and bedside table. In between the
sitting area and sleeping area was a stand that held the CD player, TV, and VCR.
The common living, dining, kitchen areas of The Neighborhood were open,
like a ranch-style house: the living area opened into the dining area and a work
counter separated the kitchen from the dining area. There was a piano, a baby crib
with dolls and stuffed animals, a TV, VCR, and an enclosed washer and dryer where
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caregivers did the laundry. The residents were included in the task of folding laundry
if they were interested.
I spent a few days settling Mother into her new room, learning about the
routine, and getting to know the caregivers. One caregiver, I'll call her Sarah, stood
out as remarkably sensitive and capable with Alzheimer's sufferers, and offered great
support to my mother as she adjusted to the world of Alzheimer's. Sarah lavished
attention on Mother and Joey and, I think, genuinely enjoyed not just caring for, but
having a relationship with my mother and the other resident whom I'll call Jim. Sarah
was always willing to talk with me, either during my visits or on the phone, about
what was going on with Mother and Joey. She took Jim, Mother, and Joey for walks
through the grounds of the adjacent middle school and told me about conversations
they had on these walks.
I felt great relief after spending time with Mother in The Neighborhood,
believing that she was well cared for and fairly comfortable. During these first days,
she would ask me what was happening to her home, and when she was going home. I
would respond that her home was the same as it had been and I would remind her that
she had been unhappy living there alone, and that was why we moved her and Joey to
this apartment where there are people to help her.
After the first month Mother shifted from pressing me about when she could
go home to saying, I wish I could go home, but I know I can't. Drawing clues from
her body language when she said this, I noted a downcast but not angry facial
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expression. I interpreted this response as resignation and acknowledgement, on some
level, that she knew she needed the care she was getting. I was relieved to see her
adjust with very few negative behaviors. I speculated that her transition from living in
her own home to living in a facility was eased mainly by Joey's presence and also by
the fact that there were attractive surroundings and a sensitive staff, and by the close
relationship and positive feeling between us. Although she spent at least half of each
day in her room and resisted participating in most activities, she responded warmly to
most caregivers, she did not develop behavioral symptoms such as aggressiveness,
and she did not make attempts to leave, as do many people who are moved into an
Alzheimer's facility.
In mid-October of 1999,1 felt comfortable about my mother's situation for the
first time since 1997 when I had first begun to notice signs of cognitive decline. The
fact that she was receiving good care and was comfortable allowed me the time and
energy to establish resources and routines with medical specialists for her and
veterinary care for Joey. This process was not without its complexities. For example,
a highly recommended internist was 30 minutes behind schedule and brusquely
administered the Mini-Mental Status Exam without first trying to establish a rapport
with her. He asked questions and made notations in a rote, detached manner, and
Mother grew agitated and was irritable and uncooperative with both the doctor and
me by the end of the brief appointment. I found another internist who was very warm
and adept at establishing a rapport with her and very supportive of me during the next
2 years.
As I settled into a routine with Mother, I looked for ways that we could have
fun together, planning activities that she was capable of doing and enjoying. One
Friday evening my husband and I took her to dinner. I had called ahead to tell Sarah
of our plans and she helped Mother get dressed and made a fuss over her, stirring
excitement and anticipation. As we were leaving The Neighborhood, my husband
pressed the code on the alarm pad next to the locked door, but the green light did not
go on. Mother had been watching him press the numbers and she reached over his
hand and pressed four numbers saying, "No, you pressed the wrong numbers." After
she pressed the numbers, the green light came on. I reported this incident to the staff
and the code was changed.
Usually I planned activities with Mother during the day because it was a 1-
hour drive to The Vineyards, and because I wanted to get Joey out for walks. I tried
many different activities, some successful, and some dismal failures. I took them to
an outdoor Oktoberfest at a winery one Sunday, and by the time I found places to sit
and gathered food for us, the band had quit playing, and both Mother and Joey were
irritable. I tried many restaurants, some outdoor where Joey could join us and some
indoor, which meant Joey stayed in the car and barked. One restaurant became an on-
going success. It was an Italian restaurant at the edge of a vineyard with beautiful
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gardens, a fountain, and a cat that meandered around the tables. There was Italian
music playing, and I would tell Mother we were having lunch in Italy.
In my search for ways to celebrate the seasons with Mother, I tried a variety of
activities such as baking and planting tulip bulbs with her. She didn't show much
interest in the planting. I brought her to my house for the long Thanksgiving weekend
and she seemed to enjoy being part of our family, although she was disoriented when
I was not at her side. She responded to my son's question about whether she liked her
new apartment by saying, "No, but Joey is there." As we moved into the Christmas
season, we enjoyed listening and singing along to Christmas music on CD's, as well
as at a Christmas sing-a-long hosted by The Vineyards. I liked and felt supported by
most of the staff and was beginning to feel as if I was part of The Vineyards
community. By December, 1999, eight new residents had moved in to The
Neighborhood, and I was developing a relationship with the new residents as well as
some of their families.
I again brought my mother to my house for several days at Christmas, and it
was a very difficult time. She was more disoriented than she had been at
Thanksgiving, and was agitated and irritable if Joey was out of her sight. Joey was
beginning to show signs of strain. Life in The Neighborhood was much more hectic
than life alone with my mother had been, and I suspect that he was aware of the
changes in Mother. He was agitated most of the time and was becoming very attached
to me. On Christmas Day our whole family was in the kitchen preparing for dinner.
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When I left, Joey followed me, and Mother cried out angrily, "He's my dog, not
yours. You're taking my dog away from me. You have your own house. I don't have
a house." A few minutes later we gathered in the living room before dinner and
Mother was scowling intensely. I played a CD of Christmas waltzes and my husband
and sons took turns dancing with Mother and me. The music and dancing transformed
her mood. She seemed to forget she'd been angry and we had a congenial dinner. The
morning after Christmas I went to Mother's room to help her dress and found her
agitated and irritable. I took her and Joey for a walk in a nearby Buddhist garden and
she complained that the wind was blowing her hair. When I asked her if she liked the
garden, she pointed to a weathered tool shed and said, "No. I wouldn't want to live
there, would you?"
It was a relief to take her back to The Vineyards and a relief that she never
had a negative response when we drove into the parking area. I was fortunate that,
unlike many accounts I have heard and read about, Mother never expressed dismay at
returning to The Vineyards. She was always greeted warmly and she usually
brightened when she was greeted. I would try to get her engaged with a caregiver or
activity so that my leave-taking was not abrupt. Sometimes she would bid me a warm
goodbye; sometimes she was irritable and sometimes dejected. I would look through
the window between the hall and kitchen as I was leaving, and it was wrenching to
leave her when she looked depressed. I have an image etched in my memory of her
sitting at a table in the dining room with an angry or dejected expression. Often she
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would look up at the ceiling with a yearning expression as if she were pleading for
relief. I would set out for home with very conflicted feelings: intense sadness at her
misery, grief at losing her bit by bit, guilt at leaving her in a facility, and relief that I
could leave her in a facility.
During the years from 1999-2002 my life was dominated by the question of
how to give to her without feeling resentful or depleted. I spent time coordinating
appointments, gathering supplies for her, taking care of paperwork, strategizing with
caregivers about her needs, and planning and carrying out activities with her. I was
stretched thin by these efforts in addition to other commitments, and so I decided to
integrate two areas of my life, my studies in depth psychology and my involvement in
my mother's life. In response to a class requirement, I designed a research project that
focused on how to have a caring, meaningful, supportive relationship with someone
who has Alzheimer's disease.
The following section of this chapter describes this research project. It
provides anecdotal responses to the questions of how to discern and meet
psychological and spiritual needs of those who have Alzheimer's disease. The
anecdotal responses take the form of stories told by subjects of interviews I
conducted, and of descriptions of my experiences in The Neighborhood. These stories
about people in the middle stage of Alzheimer's disease bring to life the medical
description of cognitive deterioration resulting from neurofibrillary tangles and
amyloid plaques, and they validate a statement made by a lecturer at a conference on

Alzheimer's disease: "If you've seen one person who has Alzheimer's, you've seen
one person who has Alzheimer's."
Qualitative Research into the Subjective Experience of Those Who Have Alzheimer's
Disease and of Their Caregivers
At the outset of my research I had a conversation with the executive director
of The Vineyards who was very enthusiastic about my project. He stated that he and
his staff had been struggling with the problem of how to engage the Alzheimer's
residents in ways that are meaningful to them. He offered to support me in any way
he could and to help me contact the family members of the other Alzheimer's
residents. He cautioned me that only four of the ten Alzheimer's residents had family
members who visited regularly. This warning was a foreshadowing of difficulties I
would experience in my efforts to talk with family members about their experience of
Alzheimer's. The Director, however, remained open, very supportive, and was a rich
resource.
I was heartened by this conversation and began to have ideas about how my
project might evolve. I considered such possibilities as encouraging families of the
residents to share their traditions in the form of a seasonal celebration with the
Alzheimer's community. This idea grew out of my belief that developing a sense of
community in The Vineyards might reduce the feelings of isolation and abandonment
that elderly people in assisted living facilities often experience.

The formal research of my project included attendance at a local Alzheimer's
disease support group meeting, ten interviews, and participatory research (see
Appendix B: Field Research Project—Approved Application for Use of Human
Participants). I interviewed three relatives of residents and one conservator of a
resident, and the executive director, development director, manager of caregivers, and
two professional caregivers at The Vineyards. I also interviewed a woman who cared
for a husband with Alzheimer's disease at home. Before the interviews I gave each
interviewee a list of interview questions (attached as Appendix B: Field Research
Project—Research Questions used in Unpublished Research Paper "Journey into the
World of Alzheimer's") to consider. I conducted the participatory research by
working in, and for 2 weeks actually living in, The Neighborhood.
I began my research by attending a meeting of an Alzheimer's disease support
group. This experience was valuable because it provided support and information,
and led to a connection with a woman who became one of the subjects of my
interviews. At the beginning of the meeting the facilitator and I were the only people
present. She offered me many resources and shared her experiences of caring for a
mother who died of Alzheimer's disease. Halfway through the meeting we were
joined by another woman whose mother had been suffering from Alzheimer's disease
for 10 years and was in a vegetative state in a nursing facility. She spoke mainly
about the difficulties of caring for her mother and the immense toll this had taken on
her health. She warned me to enjoy what I can with my mother while she knows me,
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because worse times were coming. I felt discouraged and anxious as I left the meeting
and spent the next several hours investigating nursing facilities so that I would be
prepared when my mother progressed to the last phase of Alzheimer's disease. The
facilitator of this support group called me with the name of a member of the group
who had lost her husband to Alzheimer's disease 3 months earlier. The facilitator
assured me that this woman, whom I will call Martha, welcomed the opportunity to
talk about her experience. I called Martha and found her warm and easy to talk to, and
she kindly invited me to come to her home for the interview.
The Interviews
Of the 10 people I interviewed during the course of this project, one interview
was conducted in the home of the interviewee; two in my home, one in my office, and
six in an office at The Vineyards. The following description of the interviews gives a
brief summary of each interview and a general discussion of data from the interviews.
The data, or stories told by interview subjects, are organized as responses, or answers,
to the central research questions: "How can you have a meaningful relationship with a
person with Alzheimer's," and "How can caregivers discern and meet the
psychological and spiritual needs of those with Alzheimer's?"
I began my interviews with Martha, a homemaker who cared for her husband,
Harold, at home from 1995, when he was diagnosed with Alzheimer's disease, to his
death in 2000. Martha shared her inspiring story with tears and humor. She expressed
appreciation for being able to speak openly about her experience with Alzheimer's
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disease and her grief at the loss of her husband. She said that most of her friends were
urging her to get on with her life. They did not understand her need to talk about her
loss. There was no trace of self-pity in her description of what it was like to be the
main caretaker for and live with someone who is dying the slow death of Alzheimer's
disease. Although she was skeptical about seeing meaning in Alzheimer's disease
from a depth perspective and the subject of spiritual needs seemed esoteric to her, she
provided some of the most meaningful stories about the emotional and spiritual life of
someone with Alzheimer's disease. One of her stories focused on Harold's passion
for music. She explained that he had been a fine pianist. As he deteriorated, he played
fewer and fewer classical pieces until he reached a point where he played one popular
song over and over and then, for 6 months, he played nothing. One evening some
friends were visiting, one of whom was a woman of unusual sensitivity and a favorite
of Harold's. This woman encouraged him to play the piano. He went to the piano,
chose a classical piece, played it, and never played again. This story recalls author
John Bayley's (1990) story about his wife, Iris, who, in mid-stage Alzheimer's
disease, responded with profound poetry to the question of a friend. Bayley puzzled
over his observation that Iris' "terrible felicities" seemed to occur with a little help
from friends (pp. 259-269). Bayley's observation raises the question of whether
Harold's sensitive friend may have helped Harold access his passion for and ability to
play complex music.

After my interview with Martha, I interviewed three caregivers at The
Vineyards: Sarah, Anne, and Dave. From the time my mother moved into The
Neighborhood, I felt gratitude for Sarah's dedication, and was touched by the fact
that, after working a long shift, Sarah met with me for 2 hours and had written three
pages of notes in response to my questions. Anne, whose job as manager of
caregivers was diverse and very demanding, had worked with Alzheimer's residents
for 10 years. Dave, a young man in his early 20s, described his involvement in a
spiritual tradition which he reported was helping him find meaning and purpose in his
life. He also spent time talking with me after working a full shift. I observed him
during his shifts and was impressed by his conscientious efforts to meet the needs of
the residents.
I then interviewed Ted, the executive director and Jan, the development
director for The Vineyards. Ted commented on the difficulty our society seems to
have with subjects like Alzheimer's, death, ageing, and spirituality. He described his
spiritual faith and discussed how his faith helps him to value the work of caring for
those with Alzheimer's disease. Jan was very articulate in explaining the vision of
The Vineyards and the characteristics which set this facility apart from others.
Although she worried that she would not be able to answer my question because she
did not actually work with Alzheimer's residents, she made many valuable
contributions. She told of observing Claire, a resident of The Neighborhood, talking
in a low voice. When Jan asked to whom she was speaking, Claire replied, "To the
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man up there," and pointed toward the ceiling. Jan replied, "I hope you will share
with us what he says." Claire replied, "No—no—no! It's private. It's between Him
and me."
One of the greatest challenges during the interview phase of my project was to
connect with the family members of the ten Alzheimer's residents. Ted very kindly
sent a letter to the families of the Alzheimer's residents, explaining my project and
encouraging them to call me. He, of course, could not give their telephone numbers to
me. None of the families responded to my letter, but I was lucky enough to meet a
few relatives of the residents while visiting in The Neighborhood. They were willing
to be interviewed and gave me their phone numbers. I ended up with only two
interviews with family members and one interview with a conservator for a resident.
I first met with Ellen, the daughter-in-law of Claire. Ellen had cared for her
mother, who died of Alzheimer's disease and was now helping her husband care for
Claire. Ellen was very generous with her time and offered many valuable stories in
response to my questions. I next met with Carla, the daughter of Margot, one of the
newer residents of The Neighborhood. Carla explained the history of her mother's
deterioration. When it became clear that her mother could not live alone, and would
not allow caregivers to come into her home, Carla and her brother tried to move
Margot into their homes, as they each lived many miles from Margot. While staying
in her children's homes, Margot was continually agitated and sat every day next to
her packed suitcase waiting to go home. When it was clear that Margot was not happy
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living with her, Carla moved her into The Neighborhood at The Vineyards and stayed
with her for 3 weeks, hoping to help her adjust. After Carla left, her mother (an
unusually fit woman) packed a pillowcase with her clothes, threw the pillowcase and
her purse over the fence, and climbed over the fence.
My third interview was with Terri, the only person who responded to Ted's
letter. Terri was a conservator for one of The Neighborhood residents. She was very
generous with her time and also a good resource because her father, who lived with
his wife (Terri's stepmother), had Alzheimer's disease. My last interview was with
my 24-year-old son who spent time with my mother and whose sensitivity, humor and
capacity to just be with someone generated an unusual responsiveness in her. He took
her and Joey for a long drive on one visit. He later commented that it was the longest
period of time he had ever spent with her alone. I sensed some regret in him that his
grandparents had lived so far away that a close relationship with them had not been
possible.
Discussion of Interviews
When I studied the taped responses to my interview questions I focused first
on what they had to say about my central question: "How can you have a meaningful
relationship with a person diagnosed with Alzheimer's disease?" As I analyzed these
responses, three central themes emerged: the importance of attunement to the
individuality of each person, the importance of finding ways to show respect and
sensitivity, and the importance of a capacity to care with sincerity, constancy, and
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reciprocity. This analysis was based on my listening to the stories as if they were
answers to my research questions. The themes, then, represent interpretations of the
data derived from the heuristic mode of research—a process that draws from self-
search and explications of others.
The theme of attuning to the individuality of residents was addressed by Jan in
her comment that it makes her cringe when she hears the Alzheimer's residents
referred to as patients, those people, or that population. She stressed the importance
of getting to know each person—"what was important and what may be important
now." She explained that The Vineyards provides an environment where the
emphasis is on quality of life and medical treatment is a part of the care provided, not
the focal point. Sarah also commented on the importance of attuning to individuality
by explaining that she considers it a part of her job to know the residents in her care
well enough to anticipate their needs; to understand their fears, likes, and dislikes;
and to be able to figure out the way each communicates. Ellen contributed to the
theme of individuality by describing the difference between her mother and her
mother-in-law, Claire. Ellen's mother had always been very sociable, and in the early
stages of Alzheimer's disease she took daily walks and knew everyone in the
neighborhood. In the later stages, when she was in an assisted living facility, Ellen's
mother considered the caregivers her daughters and would move her wheelchair to the
elevator so she could visit with people as they came and went from the elevator.
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Ellen related that her mother would "babble about nothing" and once, when
Ellen asked her, "Ma what's my name?" her mother replied, "How could I forget your
name?" and then said, "It's not important." An hour after this exchange her mother
asked, "Ellen, would you pass the sugar?" Ellen's mother-in-law, Claire, had a milder
form of dementia, and was less sociable than Ellen's mother. Ellen stated that the
meaning in Claire's life was located in her love for her son. Ellen told stories of how
Claire's eyes would light up when she saw her son.
On the subject of showing respect and sensitivity, Ted stated that two of the
goals of The Vineyards are to provide an environment that is sensitive to the needs of
each individual, and to provide caregiving that is informed by an understanding of
Alzheimer's disease. In keeping with these goals, The Vineyards provides a structure
with regular meals and help with self-care, but flexibility so that no one is forced to
participate. There is also a continuing effort to understand what activities engage the
Alzheimer's residents. Ted described some of the activities that seem meaningful to
these residents: traditional household tasks such as folding clothes and sweeping;
singing hymns; dancing to familiar music; having their hair combed, hands massaged,
nails done; and watching favorite movies. Ted told a story that speaks to the effort to
find meaningful activities. The activities director invited the residents to help her
plant flowers and herbs in pots. Some residents did not help, some helped in a half-
hearted manner, and one woman who had lived on a farm most of her life engaged in
the planting with gusto.

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Sarah expanded on the importance of being respectful of the feelings of the
residents. She explained that their feelings are still intact, are always retrievable, and
they do not like to be bossed or forced to do things. She told a story of a resident who
resisted help with dressing, and when the caregiver persisted, she was bitten by the
resident. The caregivers at The Vineyards are instructed to support and, with the
exception of health and well-being issues, not force residents to dress, eat, or
participate in activities.
The third theme that emerged in the interviews was the recognition that people
who have Alzheimer's disease have a need for a relationship with someone who cares
about them—a relationship in which what they say and who they are is valued. Sarah
stated that the residents can tell if a caregiver is sincere and cares or is just rotely
doing a job. She offered the observation that a one-to-one relationship is the best and
most meaningful relationship between caregiver and resident as well as between
residents. She told of a time when she went into my mother's room, where Mother
was sitting on her bed, and another resident was sitting nearby on the couch. Neither
woman was speaking but each seemed to be enjoying—valuing—the presence of the
other. This story was meaningful to me because it gave me insight into Mother's life
in The Neighborhood. I was struck by the fact that the woman sitting on the couch in
Mother's room was a quiet, reflective woman who, of all the residents in the
neighborhood, seemed most similar to my mother. Sarah's insight that people with
Alzheimer's have the capacity to understand the nature of relationships with others—
to know when there is warmth, sincerity, a close affiliation, compatibility, or disdain,
insincerity, detachment—shines through a story Martha told about asking her
husband if he knew who she was. She said he struggled for a time and finally said,
"You're my sweetheart." He found a word that described the relationship he had with
someone for whom he felt a close, romantic attachment.
In a third story related to the theme of the need of Alzheimer's sufferers for
caring relationships, Terri explained that her father, to whom she had always been
close, was in the middle stage of Alzheimer's and spent most of his time in bed. He
would only get up and shave and dress when Terri was coming to visit him. Terri
explained, "I've been good for him, I lighten things up for him." She said that during
one of her visits with him he asked, "Where' ve you been all day," and then said,
"Let's go home." These stories imply that, like with small children, people with
Alzheimer's are aware of and value an on-going relationship with a caregiver who is
sincere and is a constant in their lives.
In the course of reviewing the stories I began to notice the importance of
reciprocity. I heard many stories indicating that there was give and take in a
relationship with a person who has Alzheimer's. Dave spoke about working in a
private home which operated a bed and board for five women with Alzheimer's. He
described the love he felt from and for these women and said, "It was like having five
grandmothers." Sarah explained that "the residents in The Neighborhood are my

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friends. I gain insights from them and see that they have room in their hearts for my
love."
The previous discussion focuses on the broad question of how to have a
meaningful relationship with a person with Alzheimer's. Many of the stories in the
interviews also gave insights into the emotional and spiritual life of a person with
Alzheimer's. There were examples of humor, kindness, and attunement to music and
the seasons. Martha told of a humorous interaction with her husband just hours before
he died. She had stepped into a bathroom off his bedroom to take a shower and
realized there was no towel. As she walked naked past his bed to get a towel, she said,
"You're in for a real treat," and he smiled at her. When she walked past his bed again
toward the bathroom, he smiled again. Carla reported that her mother laughed heartily
when Carla did something silly—they laughed together. I had experiences like this
with my mother. Once when I was helping her dress, I tried to put a skirt on over her
head. I had one arm up, the other down, and the skirt got stuck so that she couldn't
move. We both laughed. I observed a kindness to my mother one day when I was
taking her to lunch. We were walking toward the door and my mother began to shiver
and say she was cold. I ran to her room to get her sweater and when I returned,
Carla's mother, Margot, was lovingly putting one of her sweaters around my mother's
shoulders.
Some stories spoke of displays of emotion which are not easy to understand.
One resident of The Neighborhood often reached out to people and begged them to sit
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close or take her with them. She occasionally got into bed with another resident.
Sarah's explanation was that she was lonely and needed reassurance, direction, and
feedback. Sarah told of a male resident who wandered into my mother's room at
Christmas, looked at her lighted Christmas tree, then looked up and tears came to his
eyes. On another occasion Sarah found this same resident in tears and when she asked
what was wrong, he said he did not want to be this way and he could not figure out
how to stop being so confused.
There were some instances when a resident was very clear about what was
meaningful. During one of my visits to The Neighborhood I asked a caregiver if I
could help in some way. He suggested that I read to a group of residents who were
sitting in the living room. I took a copy of a "Reader's Digest" magazine and asked
the group if they wanted me to read to them. One of the residents, with a sweet smile
on her face, shook her head no and said, "We're happy just the way we are." This
woman demonstrated that she has a mind of her own even if it is a mind compromised
by deterioration.
In response to my question of how memory loss and confusion affect the inner
life of people with Alzheimer's, Anne responded that memory loss makes it harder
for them to make sense of their feelings. Sarah described the confusion of a person
with Alzheimer's as similar to a person going to an ATM machine. The person knows
she has money in the bank but cannot remember the PIN that will access it.
Sometimes the experience is like signing on to an ATM—accessing the

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information—but then there is a disconnect and you cannot get it out, or it comes out
scrambled.
As a conclusion to this discussion of the data I gathered, this final story came
from an interview with my son and speaks to what it is like to have a family member
who has Alzheimer's. In response to my question about whether there are certain
contexts that allow a deeper relationship with someone with Alzheimer's, he said that
he felt this happened with his grandmother when he was "sitting around—hanging out
with her and not pressuring or testing her." When I asked him if he could see any
meaning in this stage of his grandmother's life he replied, "There's the fact that she's
kind of coming to grips with her memory loss, you might say there's meaning there."
I concluded this interview by asking him if there was meaning for him in spending
time with his grandmother. He responded, "It feels good to help someone along on
that path, kind of hanging out with her, not pointing out where she's lacking, just kind
of accepting her."
Observation and Participatory Research: Stories of Interactions with Those in
Middle-Stage Alzheimer ys Disease
After my mother moved into The Neighborhood and her situation stabilized, I
became aware of a timeless quality in certain experiences with her. I often slipped
into this sense of timelessness when I took her to the Italian restaurant where she
could stare and exclaim as long as she wanted over the flowers. The waiter's
expressions would soften when they saw her and they would joke with her. We would
eat mostly in silence. The beauty and serenity of the surroundings and my mother's
lack of agitation and anger helped mitigate the loss of her companionship.
Occasionally I would tell a familiar story about relatives and she would smile or
laugh. She spent most of the lunch focused on eating her salmon and mashed
potatoes, and I felt a connection to her on a feeling level but not on a cognitive level.
During one of these lunches I choked and she snapped out of her trance-like state and
looked at me with concern—a look that was so familiar during my childhood.
Another timeless experience happened during the first Christmas season after
she moved into The Neighborhood. I had decorated a Christmas tree for her with
lights and the beautiful, beaded ornaments she had made on fall afternoons while my
father watched football games. She was excited to see the ornaments as I unpacked
them and she would hold each one and tell me a story about it. She had sent me some
of these ornaments in years past and I had not liked them very much. When I
decorated her tree with all of her ornaments and garlands, I was struck by what a
beautiful, feminine-looking Christmas tree it was. We had a cup of tea and listened to
Christmas songs. She pointed to a picture of my grandparents and said, "Look, Kris,
there are our parents." She stood up and started over to the picture, stopped, looked
confused, and came back and sat down. As we sat in silence I felt the presence of the
ancestors in my mind—my grandparents, great grandparents, aunts, and uncles—as
well as memories of past Christmases.

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As more people began to move into The Neighborhood, my mother's world
became more complex. The increased number of residents created more tension and a
more hectic pace, which seemed to set everyone, including Joey, on edge. I heard
stories that Jim was deteriorating and becoming aggressive—often toward Joey. I
received word that Joey had bitten one of the caregivers. I panicked at the thought
that Joey would be asked to leave, knowing how much he meant to my mother. The
director was aware that the new residents and Jim's deterioration were causing
tension and agreed to give Joey another chance. Not long after the incident with Joey,
I got a call that my mother had fallen and had some bruises. I drove to Napa and
when I talked with her she said over and over "He hit me. He hit me hard right here,"
and pointed to the back of her head where I found a bruise. Jim's family tried
medicating him to reduce his aggressiveness but the medication made him comatose
and his family was asked to find another place for him. During this difficulty I spent
the night with my mother to ensure that safety measures were in place to keep Jim
under control. We ate popcorn and watched videos of "I Love Lucy" and "On
Moonlight Bay," an old musical my mother had taken me to years ago.
Medication for behavioral problems of those with Alzheimer's disease was an
ever-present issue during my mother's progression through the stages of Alzheimer's
disease. There was the question of whether to try cognitive-enhancing drugs. Most of
the people I talked to during the course of my mother's decline had little confidence
in cognitive-enhancing drugs either because they rarely brought about a significant
improvement or because the side-effects were intolerable.
There was also a question of whether to use antidepressants and antianxiety
medications to reduce agitation, depression, and insomnia. The problem with use of
these medications with demented elders, I learned, is that elders are often more
sensitive to certain medications and with demented elders it is difficult to assess and
arrive at the appropriate dosage. In addressing aggressive or dangerous behaviors like
Jim's, there was the question of whether to use stronger medications such as
antipsychotics. Again, the challenge is to assess and manage a therapeutic dosage. I
observed the difficulty of using strong medications not only with Jim, but also with
Margot, the unusually fit woman who climbed over the fence. Margot was put on the
antipsychotic Risperdal. Margot's daughter reported to me that her mother's geriatric
psychiatrist claimed that Risperdal is being used more regularly with Alzheimer's
disease patients because it so successful in managing problem behaviors. After
Margot had been put on Risperdal, I watched her behavior change over the course of
a month. She went from being very active to drooping over meals and slumping in
chairs and shaking so much that she could not hold a cup of coffee. I sat next to her
one day and she looked at me with anxiety in her eyes and said, "They've done
something to me. They've given me something." Margot's daughter decided to
discontinue the Risperdal and Margot was put on a milder antianxiety medication. I
felt fortunate that my mother did not develop any problem behaviors since I was
committed to working with medical professionals to keep her comfortable (managing
pain and anxiety) with as little medication as possible.
My observation and participation in The Neighborhood brought me into a
deeper relationship with the world of Alzheimer's and into a greater awareness of the
depths and heights of this world. The mornings in The Neighborhood were a busy
time for the caregivers. They helped the ten residents get dressed, served them
breakfast, cleaned the rooms—including vacuuming, mopping floors, making beds—
and did the laundry for each resident. One of the residents was in diapers and in a
wheelchair so he always needed to be changed, bathed, dressed, and given breakfast.
The other residents, including my mother, were beginning to lose control of their
bowels and bladders, so often they had had accidents in the night and needed to be
cleaned up in the morning—bathed, beds changed, dressed. The smell of urine and
feces often permeated the morning air in the hall connecting the bedrooms. I rarely
smelled it in the afternoon or evening.
The job of toileting and cleaning up the residents who were beginning to lose
control was made more difficult by the fact that many were trying to maintain some
shreds of independence and resisted help. They were awkward and unsteady on their
feet and many tried to walk away or sit down. Changing these elderly residents was a
very different experience from changing a toddler on a changing table.
I had my first opportunity to experience the challenges of changing someone
in mid-stage Alzheimer's disease one evening when I had dinner in The

Neighborhood with my mother and another resident. Mother ate slowly, in her trance-
like state, and said nothing. It took her 2 hours to eat. She and the other woman,
whom I will call Kate, said nothing to each other. I had been told that Kate liked to
eat with my mother because she was quiet. Kate apologized to me because her Fritos
were such noisy food and swore softly in complaint that the young male caregiver
"thinks he owns the place" and "doesn't know what he's doing." Sitting for the 2
hours gave me a chance to talk with the caregivers, who seemed eager to share
observations about the residents and stories from their own lives. I could see some
affiliation and interaction between two or three of the residents. The other residents
ate in silence, asked for help, complained, or reacted to questions from the caregivers.
After Mother finished dinner, two caregivers brought a bingo game to our
table and brought three more residents to the table to play the game. My mother was,
typically, not interested in playing, so I helped another resident play. As we were
playing, it began to smell like someone had had an accident. It turned out to be
Mother, so I took her to her room to change her. I had to struggle with her confusion,
resistance, and stiff limbs, and with Joey's efforts to stay close to her. During this
process I felt guilty that she had strangers taking care of such personal needs, and I
also felt thankful that I did not have to do this all day, everyday, for an unlimited
period of time. I went from this low point to a high point of fulfillment. After I
changed her, I put a clean nightgown on her, tucked her in bed, put some soothing
music on the CD player, and rubbed her back until she fell asleep.
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As I spent more time in The Neighborhood, I watched the residents respond
positively to the smell of cookies baking and to caregivers when they were in the
kitchen preparing food. I decided that I would try to bring the art of homemaking into
The Vineyards in a way that would be nurturing and supportive but not intrusive to
both residents and caregivers. Ted gave me permission to bake bread and make jam in
The Neighborhood's kitchen.
I prepared everything I could at home before setting out on a warm July day
for the 1-hour drive. When I arrived at The Vineyards, the lunch dishes had just been
put away and a few residents were sitting in the living-dining area. My mother and
several other residents were taking naps. I set a big bowl of strawberries on the
counter and mixed and kneaded the bread. As I did this, one of the male residents saw
the strawberries and came and took a handful.
While I was kneading, several caregivers wandered into the kitchen and talked
about their work and their lives. They seemed pleased that I was there and were very
appreciative that I was making jam. One caregiver told me that Joey had bitten her. I
was startled and worried by this and apologized to her. My feelings about Joey were
ambivalent. On one hand, he is an adorable-looking, well-behaved animal. He was
very important to my mother, and I felt a kinship with him in that he showed signs of
having been treated like I was as a child—well cared for but strictly controlled. On
the other hand, he was a major pain in the neck for me much of the time. He became
excited and raced around and barked every time I entered The Neighborhood, and if I
got angry and told him to stop, some of the residents got upset and would say, "He's
ok, dogs are supposed to bark." All but one of the residents liked Joey and I think
may have identified with him in some way. He also could be unruly when I took him
and my mother for a walk. I suspected that he had a great deal of pent up energy and
this made me feel concern for his well-being. I also worried that he was functioning
as an on-site ombudsman reacting to a harsh or brusque caregiver. I knew that Joey
was in a situation where he got little exercise and most likely was aware that my
mother was changing. So, as I kneaded the bread, there was a warning sounded that
all was not well with the nonhuman world.
I put the bread in the oven, and soon people began to stop and ask when the
bread would be ready. I started the jam and as I was stirring it, my mother appeared
and was surprised to see me. I put an apron on her and pointed out that I was using
her wooden spoon. She looked confused, so I put it in her hand and helped her stir
and then laid the spoon on the counter. She walked out of the kitchen and then turned,
walked back in, grabbed the spoon, stirred the jam, laid the spoon down and walked
out of the kitchen again. It seemed to me that she remembered how to stir the jam and
wanted to show herself or me, or both of us, that she could do it.
By the time the bread and jam were done, most of the residents were sitting at
tables waiting for a snack. The caregivers were delighted to see homemade jam and
helped me serve it to the residents. I gave several jars of the jam to the caregivers and
cleaned up my mess and then noticed that my mother was gone. I found her lying on
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her bed with eyes staring a blank stare. I persuaded her to come into the garden where
Carla and her mother were sitting at a table eating jam and bread. We joined them and
other caregivers and residents came and went as Carla and I talked with our mothers.
My mother became more animated than usual and ate several pieces of bread and
jam. She watched as Carla and I talked and had a look that seemed to say she enjoyed
this conversation of mothers and daughters. Carla was very skillful in including my
mother but not putting her on the spot.
I left that evening and drove through the hills and vineyards into a beautiful
sunset listening to an inspiring choral piece. This was definitely a high point, which
was soon to be followed by a low point. Two days after the jam-making, I received a
call from the Manager of the Caregivers. She reported that the caregiver, who had
complained to me that Joey had bitten her, complained again and reported that Joey
had also bitten her daughter. The manager said she would try to work with me, but
Joey may have to go.
I felt a mixture of panic, anger at the caregiver and at Joey, and worry that
Joey may be reacting to a hostile environment. Several caregivers made a point to tell
me that they never had problems with Joey and wondered if Joey bit the caregiver
because she was forcing my mother to get dressed. Joey may have been protecting
her. I spent several hours each day for the next week with my mother and Joey
observing and monitoring the situation. I did not observe any negative interaction
between my mother and any of the caregivers. I lined up a professional dog walker to
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walk Joey in the afternoons and a young brother and sister who lived nearby to walk
him in the mornings in the hope of reducing Joey's aggressive behavior. I walked
Joey with each of them him and agreed to pay a hefty monthly sum for dog walking.
The professional dog walker was very reliable and the brother and sister were
conscientious children eager to earn money.
With these arrangements in place, I decided to take a few days off—not go to
The Vineyards. On my second day off the Manager of the Caregivers called to tell me
that Joey had been yelping and seemed to be in pain. I told her I would come the next
day and take Joey to the veterinarian. I felt rage at this dog. The next day I took him
to the vet who found two painful spots on his back and thought he might have disc
problems. She prescribed medication to be given in a complicated pattern over the
following two weeks (I was planning to leave on a vacation in a week) and she said
Joey should be a couch potato for the next 2 weeks. She meant he should go for no
walks, only outside briefly to do his business.
I went back to The Vineyards and was heartened when the staff member in
charge of medications said she would be happy to give Joey his medication. I took my
mother for a walk without Joey and we sat at a bus stop in a neighborhood where
there was a great deal of family activity. There were men coming home from work
and children playing in yards and riding bicycles. It was a warm day with a soft
breeze. I told my mother that the children playing on a summer day reminded me of
summers when we lived on Monroe Street. She smiled and seemed to know what I
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was talking about. We sat in silence for a while and then she asked, "Is Mother. . . .
gone?" She was referring to my grandmother, her mother. I replied, "Yes, Mother
died." She sucked her breath in and moaned "Oh" and then asked "When?" I said,
"She died in 1973." She said nothing and we sat in silence again. After a few minutes
I asked her if she felt lonely, and she said, "No, not when you're here." I told her I
loved her very much. She then gave me a look that reminded me of looks she used to
give me when she thought I was being effusive and it embarrassed her.
Conclusions Drawn from Research
My own experiences and the experiences of other caregivers had helped me
formulate answers to my central research question of how to have a meaningful
relationship with a person who has Alzheimer's disease: attune to the uniqueness of
each person and to the need for a genuine, caring relationship; show sensitivity and
respect; and, what seemed most crucial to me, find ways to engage in reciprocal
interactions.
My conclusions about the importance of attunement, sensitivity, sincerity, and
respect were consistent with the research described in many books about Alzheimer's
disease. I did not, however, find much discussion of the importance of reciprocity in
caring for those who have Alzheimer's disease. I found insights on the process of
aging that were relevant to the experience of Alzheimer's disease in books where
aging was described as a process of gradual deterioration that ends in death. In Let
Evening Come, Mary Morrison (1998) speaks of the needs of the elderly:
The old in particular need dignity and distance and privacy conferred on them
before they can show forth what lies beyond the indignities of old age—the
wisdom, deliberateness, gentleness, and (with luck) peace that age can offer
us, and that we can give to others. If we feel at ease, we can open up like
flowers; if not, our powers dry up within us, and we become all that the
negative eye sees in us: confused, disorganized, stupidly slow and repetitive,
to be fled from (p. 99).
Morrison explains that in old age it is possible to move into a new relationship
with time so that it is not experienced as
rushing past us, demanding that we run to keep up with it, but as a significant
emptiness, waiting for us to live in it and fill it with thought and feeling, a
constantly present now, like the tone of a bell. (pp. 67-68)
She tells a story of a young couple who thanked her for sharing her slow, thoughtful
pace with them. This story recalls my experiences of timelessness—leaving the fast
pace and moving into my mother's world where we lived in the moment. Morrison
further explains that "the capacity to live in the present moment, not like a caged
squirrel on an exercise wheel, enables us to experience the divine moment, the
Eternal Now. Any moment, every moment can give us its full presence—and its
present of an 'inner space' for new light and fresh insight" (p. 70). Like the young
couple in Morrison's story, I felt thankful to my mother for the experiences of the
Eternal Now that I shared with her.
During the course of my research project my mother and her fellow residents
in The Neighborhood were steadily declining. As my research project concluded, I
felt as if I were in a race with time to find ways to minister to my mother as she
slowly and steadily slipped away from me. I felt called upon to find ways to help her,
and maybe others like her, to move from fear to trust, from humiliation to acceptance,
and from despair to peace.
Deterioration in Middle-Stage Alzheimer's Disease
My project was conducted during the year of 2000. Many authors have noted
that the progression of Alzheimer's disease follows the reverse path of human
development. Instead of gaining the ability to walk, talk, eat independently, and
control elimination, these abilities are slowly and progressively lost. The atmosphere
in The Neighborhood grew increasingly hectic and tense during the spring and
summer of 2000. The number of residents had reached 17 and, although very
different in temperament, most of them were deteriorating steadily in their capacity
for language and in their ability to use the bathroom.
It was hard to determine whether the hectic environment exacerbated the
behavioral symptoms of each resident or whether these symptoms would have
developed in any environment. Some in-home caregivers describe struggling with
agitated behavior and turn to medication to decrease this behavior. My belief is that
the skill of the caregiver is a significant factor in the positive management of
rebellious, anxious behavior.
During the fall of 2000, the changes in Mother became very obvious,
especially when we had lunch at the Italian restaurant. She had difficulty sitting in a
chair, and was more agitated. When I held the chair for her she turned away from it
and then, at my urging she would start to sit but look anxious and stand again. It
seemed that she didn't know that a chair was under her and had forgotten how to let
her body down into a chair. I was finally able to get her to sit by putting the edge of
the chair against the back of her legs while saying, "Can you feel the chair, Mother?"
My question engaged her and she sat. I don't know if feeling the chair on her legs
activated her body's memory of how to sit, or if it was a combination of feeling the
chair and trusting my assurance that it was safe to sit. The tone at our lunch changed
from a warm, relaxed, quiet feeling between us to a more detached, anxious feeling.
Her movements were less natural, more rote, and her expressions shifted between a
glazed stare and anxious disorientation. Occasionally, I could call her into a
responsive or warm expression with a story that triggered her memory, or by pointing
out the cat. She showed no interest in the flowers.
I noticed other changes in Mother, Joey, and in other residents in The
Neighborhood. Mother's room was more chaotic, she was more disoriented when
relating to people and more unsteady in walking from place to place. Her difficulty in
using the bathroom seemed to be a combination of anxiety about sitting down,
inability to manipulate clothes, and confusion about what to do when she felt the urge
to eliminate. I worked with the staff, especially drawing on the wisdom and
experience of Sarah, to figure out how to help Mother without making her feel
rebellious or humiliated. Sarah explained that often the residents pull at their clothes
and look agitated when they need to go to the bathroom, and she educated the other
staff members about these signs, and also instituted a regular schedule for taking
residents to the bathroom after meals and before bed. Sarah suggested that I convert
Mother's wardrobe to clothes that were easy to get in and out of, and she and I
developed tactful ways of talking to Mother about using the bathroom. I had stumbled
upon one successful technique when I was helping Mother in the bathroom. I
remembered a story she had told about my sister and me when we were toddlers and
she was helping us in the bathroom. She would say, "See, you did have to go." As I
struggled to get Mother to sit down I said, "Remember when I was little and you
would say, "See, you did have to go?" Mother smiled when I recited this line and
relaxed and let me help her sit down. I also discovered a pull-up style of Depends (a
type of adult diaper) that Mother was amenable to wearing. They were similar to
regular underwear but were absorbent and easier to change.
The fall of 2000 was a point of demarcation in Mother's decline when she
clearly had moved to a lower level of functioning and needed more assistance. Her
decline followed a pattern of small lapses (being unable to access words) and then a
consolidation of these lapses into a pronounced descent (permanent inability to carry
on a coherent conversation), and then a plateau before the next series of small lapses.
I was aware, at each of these pronounced descents, of an increase in her anxiety and a
rebelliousness—irritability, at times hostility. This intense behavior would gradually
decrease as Mother became accustomed to the new level of dysfunction and the
increased need for assistance.

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At the beginning of fall I was trying to decide what to do about my traditional
vacation in Northport. Usually I spent 3 weeks in Northport, but I did not feel
comfortable leaving Mother for that long. I decided to shorten my time away from her
to 2 weeks and asked one of my sons to spend time with Mother during the weekend
between the 2 weeks. I hoped she would not notice that there was a longer time than
usual between my visits. I called her at the end of the first week and when she heard
my voice she responded, "It's been a long time."
The painful realization that she was very much aware of my absence, was
followed a few days later by news that there had been an earthquake centered near my
mother's facility and that the residents of The Vineyards had been evacuated to a
nearby nursing home. When I talked with a staff member on the telephone, she
assured me that my mother was safe and, though confused and frightened, was
sharing a room with Kate, the woman with whom she usually ate her meals. Joey had
been taken to a kennel. The Vineyards building had sustained minor damage and
would be closed for 5 days for repairs. I thought of the irony that for years I had
worried during August and September that my Mother's home in Florida would be
damaged by a hurricane and had been feeling relieved during this summer (2000) that
I did not have to worry about hurricanes.
I returned to California the next day and went to get Mother and Joey and
bring them to my home. When I approached Mother, who was sitting in a chair, she
cried out and threw her arms around my legs and hugged them intensely. I learned
from caregivers that the jolt of the earthquake had thrown her from her bed to the
floor and she had been very frightened. As we left this large nursing home where
many residents sat slumped in chairs in the halls or lined up in front of TV's, I
recognized Jim, the first resident of The Neighborhood, who had been transferred to
this nursing home and heavily medicated because of aggressive behavior. Jim sat
slumped, drooling and stuporous, in a chair in a hall.
I had bought groceries before I picked up Mother and Joey, and began to fix
dinner when I got them home. I looked forward to caring for her and thought, since
my husband was away on a business trip, I could focus all of my attention on Mother
and Joey. I set Mother up in a chair on the deck while I started dinner. She was warm
and affectionate with me but anxious when I left her side and she kept getting out of
her chair. Because of her unsteadiness I worried that she would fall down the steps of
the deck. I finally had to bring her into the kitchen so that I could keep an eye on her.
When I turned to take the chicken out of the oven and turned back, she was about to
take a bite out of a bar of soap. I took the soap and kidded her that she must be pretty
hungry if she was willing to eat soap. We both laughed and then ate dinner. I had
bought a video of "The Glen Miller Story" and after dinner I suggested we get ready
for bed and watch a movie. There was a warm feeling between us, and she was fairly
cooperative. I managed to get her in and out of the bathroom, and into Depends and a
nightgown. We settled into chairs to watch the movie. She seemed to enjoy the music
and stayed seated as long as I was with her. This calm period gave me time to
strategize about how to keep her safe through the night. My house has two sets of
stairs and I knew Mother wandered in the night. I decided to build a blockade with a
futon in the hall outside her room so that she could get into the bathroom (she was
still going by herself sometimes), but she could not get to the stairs or into any rooms
where she could trip over furniture. After watching the movie twice I tucked her in
bed and went to my bedroom. I was utterly exhausted. About midnight I woke up and
could hear her walking in the living room. Somehow she had managed to get past my
futon blockade and as I approached, she stared at me in confusion. The futon was in
place and Joey had not been able to get past it. I tucked her in again and piled a few
more pillows on the futon. About 2 a.m. I heard her get up and I arrived on the scene
in time to see her throwing one of her long legs up on the top of the futon. I put her
back in bed, built the futon blockade even higher and went back to bed. At 5 a.m. I
awoke and heard her moving around. I do not know what she did, but the blockade
was in place and there were no signs that she had run into any problems. I had called
a friend who agreed to come and take care of Mother while I ran some errands. When
I returned from the errands Mother was agitated. I wondered if she were upset that I
had left her. It was a difficult day during which she seemed irritated by everything I
did. I had bought more Depends and flannel, water resistant pads for the bed because
she had wet the bed. I was confused about whether I should just put diapers on her or
continue to take her to the bathroom. I tried to help her in the bathroom and she
would not sit and was making a mess. I said angrily, "Mother, would you please sit
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down, you're making a mess and I'm tired of cleaning up messes!" Her mouth moved
into a pout, like a small child and she drew away from me looking hurt and angry. We
had dinner and watched "The Glen Miller Story" again and she continued to scowl
and be irritable. With much greater difficulty than on the previous night, I got her into
bed, built the blockade in the hall and went to bed. I heard her moving around through
the night but could tell from the sounds that she had not moved past the blockade. I
did not hear anything that alarmed me so I did not get up until 5 a.m. She was sitting
in a chair with the same angry pout only her lips were very swollen. I asked her what
had happened and she glared at me. There was no sign of blood and I could not think
of what would cause her lips to swell. I changed her wet clothes and gave her some
juice and started the "The Glen Miller Story" again. I decided that I would take her in
for an exam when the doctor's office opened. After I had made my plans I went into
the bathroom and noticed that the bar of soap had teeth marks all around the edges. I
realized that she must be having an allergic reaction to the soap she had eaten, and got
her into the car and off to the emergency room we went. The emergency team hooked
her up to an IV and I sat beside her for 2 hours. I tried to talk to her and she had the
same angry, pouting expression. I asked her if she were in pain and she shook her
head "no." I asked her if she were depressed and she shook her head "no." I asked her
if she were upset with me and she shook her head "yes." I felt bad and apologized,
but I also was exhausted and wanted a break from her. I took her home and we made
it through one more night by watching "The Glen Miller Story" until after midnight. I
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dozed in the chair and thought surely she must be exhausted, but she sat upright with
eyes open and an angry scowl.
I put her to bed and she finally fell asleep. She was still in bed when I awoke.
My only success during this attempt at full-time caregiving was when I changed her
on the last morning of her stay. Her face looked less angry, more passive, and I began
talking to her. I said, "Oh, I can see that you're wet, here let me help you get these
wet clothes off." She seemed appreciative and was more cooperative than she had
been during the previous day. I think my attitude of helping her and my speaking
about the fact that she was wet helped her make a connection between feeling wet and
being changed.
I was extremely relieved to be able to take her back to The Vineyards. I
played a Mills brothers CD as we drove and she grew warm and affectionate. As we
entered The Neighborhood she smiled in response to warm greetings and seemed
happy to see familiar faces. I returned to stacks of laundry and dishes, which I
ignored until after a long nap.
This experience of caring for Mother was a revelation to me. I was forced to
realize how much she had deteriorated during the past year, and to realize what a
demanding and complex job it was to care for her. When she had moved into The
Neighborhood she needed help dressing and, occasionally, help in the bathroom and
was able to carry on a conversation with occasional lapses where she could not access
a word. In the fall of 2000, she communicated with phrases, needed full assistance in
dressing and using the bathroom and could move short distances on her own but was
growing unsteady and had fallen once. Her facial expression showed recognition
when she saw me, but she no longer used my name. I have a clear image in my
memory of the last time she used my name. It was a warm spring day in 2000, the
doors were open and she was sitting at a table with her back to the entrance of the
dining room. I walked up behind her and hugged her and she turned, looked
pleasantly surprised, and said, "Well, Kris!"
After caring for Mother on my own, I was much clearer about my limitations
in providing full-time care and more concerned about how to assess and meet her
needs, particularly her psychological and spiritual needs, having observed how easily
her feelings are hurt. I had seen how music continued to be a valuable means of
nurturing her, and had discovered certain forms of communication—familiar stories,
a supportive attitude, and referring to tactile experiences like "Oh, you're wet"—that
elicited cooperation from her. I was aware of problems in The Neighborhood such as
the high turnover rate of the staff, but based on what I had read about and seen in
other facilities, The Neighborhood was far better than any other facility in meeting
the needs of those in mid-stage Alzheimer's disease, and it offered better resources
than I had or could conceive of gathering. My mother was ambulatory and still able to
enjoy interactions with people and some activities. She would have required heavy
medication like Jim in order to fit into the routine of a nursing home. She was too
active to be left for long periods in an activity room or bedroom. She needed 24-hour
care. Many caregivers cited in the Literature Review discussed the difficulty of
finding resources for those in mid-stage Alzheimer's disease who need 24-hour
custodial care, but do not need medical treatment.
I decided that even though I could not care for my mother in my home, I could
work in partnership with the staff at The Neighborhood in assessing and meeting her
needs. Sarah and Ann were especially helpful in establishing a daily routine and in
developing methods of assisting Mother that did not stir resistance. I marveled at the
dedication of the caregivers, who continually sought ways to care for not only my
mother, but for 16 other residents who were deteriorating, needing more assistance
and each reacting to the loss of functioning with a unique pattern of symptoms. I
thought often about what it must be like in facilities like Happy Valley, the
Alzheimer's facility described in Chapter 3, where the residents were screaming to
get out. I have read about Alzheimer's facilities with more than 100 residents.
During this process of reassessment of needs and adjustment to Mother's
lower level of functioning, I received the call I had been dreading. Ted called to tell
me that Joey had recently bitten two caregivers and I would have to remove him from
The Neighborhood. Ted was very sensitive in acknowledging how much Joey meant
to my mother but explained that he would be negligent and legally liable if he
allowed Joey to stay in the facility. I felt very grateful for Ted's sensitivity and I
certainly understood his decision. I was aware that Joey had grown more agitated,
making it more chaotic in The Neighborhood, and that he tried to intervene when
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caregivers were trying to change Mother. Rationally, I understood that Joey had to
leave The Neighborhood, but my heart sank. What impact would this have on Mother,
and what would I do with Joey. This new dilemma stirred intense guilt. I felt torn
between inner voices. One was saying, "If you just brought Mother home and cared
for her yourself, she wouldn't lose Joey. You could arrange for home health aides and
make a nurturing home for her and Joey. "Another voice responded, "I tried hiring
home health aides when Mother first moved to California, and they were poorly
qualified and unreliable. I care about Joey but I do not want to be responsible for
him."
As I had done when my mother was moved to the Alzheimer's wing, I began
sorting through the feelings and thoughts that were stirred by this new challenge in
providing good care for Mother and Joey. Allowing the warring voices, thoughts, and
feelings to simmer led to focusing on a practical assessment of needs and resources
(both inner and outer). The director had very kindly given me a week to adjust to this
new dilemma with Joey. Even though there were on-going undercurrents of guilt, it
was clear to me that I did not have the inner or outer resources to provide good, full-
time care for Mother and Joey in my home. In assessing their needs and available
resources, I decided that the best solution for Joey was to find a good home where he
would be loved. This decision would have disappointed my mother. She had
mentioned many times in earlier years that she hoped that I would care for Joey if
anything happened to her.

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At the end of the week after Ted's call, I took Joey to my house and returned
to The Neighborhood to spend the weekend with my mother in order to assess the
impact of Joey's absence on her. My husband agreed to care for Joey even though he
was not fond of him and made it clear he did not want Joey to live with us. One
memory stands out as I think about this weekend with my mother. On Saturday
evening, when I had gotten her settled in bed and she had fallen asleep, I made myself
some tea and sat at the table in the kitchen area outside her bedroom taking notes on
Clark Moustakas' book Heuristic Research. About an hour after my mother had
fallen asleep, the bedroom door opened and she appeared, her face looking gaunt and
spectral—like an otherworldly figure. When she saw me she recoiled and scowled as
if to say, "Who are you?" She moved cautiously through the doorway and into the
lighted bathroom, and then retraced her steps holding a washcloth. Her attention was
caught by the box of tea on the counter. She put the washcloth in the silverware
drawer, picked up the box of tea and sighed with an expression that seemed to say,
"So much to do." She took the box of tea into her bedroom and put it in a dresser
drawer. I stood in the doorway watching and felt like I was looking into a world
where I was invisible and where Mother's movements and inner motivation made no
sense to me. It was an eerie scene. She picked up framed pictures and shoes and put
them in drawers, and took a sweater from the drawer and put it behind a pillow on the
chair. The expression on her face, her sighing, and gestures reminded me of her mode
when she was doing housework that she considered tedious. After watching for
several minutes, I went back to studying at the table. For the next 2 hours Mother
moved in and out of her bedroom and occasionally would open the door into the
hallway, look around, and then close the door. At one point the small, bird-like
woman in the next bedroom came out of her bedroom fully dressed and holding a
string of pearls in her hands. She looked at me and then through me and turned into
the bathroom and held the pearls to her neck looking in the mirror as if she were
deciding whether the pearls would look good with her outfit. She returned to her
bedroom and, a short time later, a woman who lived at the end of the hall opened the
door and looked in, stared at me, and then closed the door. At some point during
Mother's 2-hour wandering, I heard her say in a tone of exasperation, "Where's
Joey."
It was very hard for me to talk to Mother about Joey. My observations during
this weekend, admittedly colored by the hope that she would not be devastated by
Joey's absence, led me to surmise that she would wonder where Joey was and miss
seeing him, but that she was too confused to be able to enjoy his companionship and
to draw comfort from him. I consulted with Sarah during the weeks after Joey's
removal and, at one point, she explained that she thought my mother did know that
Joey was gone, and she thought it was better to talk to her about Joey's absence. She
had enlarged a picture of Joey and put it in Mother's room. I felt that she was right in
her assessment of Mother's sense of loss. Sarah told me that she had explained to
Mother that Joey had bitten someone and that was why he had to leave. I decided to
try to bring him into her life regularly, and gained permission from the Director to
bring him for visits with Mother as long as he was leashed and under my control.
After spending the weekend with Mother, I faced the challenge of finding a
good home for Joey. This was another point in the journey with Mother when I was
helped by great generosity. As I was walking Joey, I encountered a good friend who
lives near me. My friend admired Joey and I explained that I was looking for a home
for him. She said she was feeling good after having endured a harrowing treatment
for a life-threatening illness, and she had been thinking about getting a dog. She said
she wanted a dog about the size of Joey and wanted a middle-aged dog, not a puppy.
She decided to take Joey and lifted a great worry from my shoulders. I knew Joey
would get the kind of love and attention he had gotten from my mother. My friend
understood the bond between my mother and Joey and was agreeable to my taking
Joey for visits with Mother.
I took Joey for his first visit on November 4.1 had organized a birthday party
for Mother, inviting staff and family of the residents of The Neighborhood. I brought
food and drinks and hired an accordion player. My hope was to provide a happy time
for Mother, as well as to lift the spirits of the other residents and to try to develop a
sense of community among the families of The Neighborhood residents. Of the 15
residents who had family members living nearby, the family of one resident called to
decline my invitation, and family members of two of the residents came to the party.
My husband, my son, and my son's fiancee helped make the party festive and also
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helped keep Joey under control. I have pictures of my mother smiling fondly at my
son and his fiancee, and one of Mother dancing with my husband. The residents
danced with the staff members and sang the words of some of the songs. Mother and
the other residents seemed to enjoy themselves.
My observations of Joey and Mother during her birthday party provided
guidance about future visits for Joey. As we brought Joey through the doors of The
Vineyards and headed toward The Neighborhood, Joey started shaking and headed
back to the doors of the entrance. We finally calmed him and coaxed him through the
doors into The Neighborhood. He grew very agitated when he saw my mother and
pulled on his leash in an effort to get to her. Mother's face brightened when she saw
him and she petted him and talked to him and then turned her attention to the
accordion player. Throughout the party my son would take Joey for walks outside and
Mother didn't seem concerned about him. Based on the fact that Joey had shaken
when we entered The Vineyards and that Mother had not seemed to notice whether he
was present or not, I decided not to take Joey back to The Vineyards. I brought
Mother to my house for Thanksgiving and borrowed Joey for the day. He again grew
agitated when he saw Mother and was very distressed when we took him back to his
new home. He didn't want to leave Mother. Her response to Joey was much the same
as it had been during her birthday party.
The Saturday after Thanksgiving I took Mother out to lunch for the last time. I
had begun to feel uneasy about taking her out because of her deterioration, and wasn't
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sure whether she enjoyed it. I decided to try a family-style restaurant for lunch. I
ordered meatloaf and mashed potatoes for both of us. As we waited for our food,
Mother kept trying to pick up the flowers in the brocade placemats. Her regularly
scheduled eye appointment was in mid-January and I made a mental note to ask how
the deterioration of Alzheimer's disease had affected her vision. When our food
arrived, I cut some pieces of meat, which I'd been doing for several weeks, and
handed her the fork. She looked at the fork, tried to manipulate it, couldn't, set it
aside and gathered some mashed potatoes with her fingers and ate them. I tried the
fork again, and she again set it aside and ate with her fingers. I looked around and the
people at the next table were staring at her. I let her finish eating and then moistened a
napkin, cleaned her hands and we left. She seemed oblivious to me as well as to other
people.
I again brought her to my house to spend Christmas Day with my family. She
was in a good mood when I picked her up. I put her white coat around her, the same
white coat she had flung around her shoulders the night she was so angry with me for
walking home after dark when I was a teenager. I played a Mills Brothers Christmas
CD during our trip and she looked at me at one point with child-like animation and
said, "This is fun." A few minutes later she moved her fingers through the soft fur of
her coat and murmured, "Nice."
I had again borrowed Joey for the day and Mother was happy to see him. She
was warmer and more animated than usual as we opened presents. Joey was agitated
from the time he saw my mother. When a stuffed animal dropped on the floor, Joey
pounced on it and ripped it to shreds. After taking Joey back to his new home, my
youngest son reported that Joey had pulled on his leash and had seemed very upset
about leaving. My son expressed concern that visits with Mother seemed to be hard
on Joey.
As we moved into the year 2001, Mother's new level of dysfunction forced
me to curtail many activities we had previously enjoyed. I shifted from planning
outings to planning baking projects where I could talk with staff members and we
could include Mother in our conversation. I also packed up most of the items like
framed pictures, jewelry, make up, and vases, because Mother put them in strange
places and seemed to be confused about what they were. I hung several framed
pictures of family members on the wall over the couch in the hope that she might
have moments when she recognized them and might feel some comfort in seeing
them. I spent many hours sitting with her in her room listening to music. Sometimes
she would sit close to me and seemed affectionate and at peace and sometimes she
paced and was agitated and irritable. I enjoyed the times when we sat close. It was
hard for me to leave. I would set a time for my departure and then not worry about
time. I savored being with her in a timeless space.
One of the items on my to do list that I had not addressed was dental care for
Mother. She had begun to grit her teeth at times and the staff and I were trying to
figure out whether the gritting was a symptom of pain or anxiety. Dental care rose to
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the top of my list when I arrived one day and discovered that Mother's left cheek was
slightly swollen. She didn't seem to be in pain when I pressed on the swollen area,
but the staff nurse and I were concerned that she might have a broken tooth or
infection. I got the name of a dentist from one of the staff and made an appointment
for the next day.
The experience of this dentist appointment was the worst example of
prejudice and negative attitude toward dementia that I encountered during the journey
with my mother. I parked in a handicapped space and, as I was helping my obviously
fragile mother out of the car, a man pulled in next to me and yelled at me because I
did not have a handicapped sticker on my car. When we entered the waiting room of
the dentist's office, I went through the difficult process of coaxing and cueing Mother
to sit down and turned to the receptionist who was staring at my mother with disdain.
I gave her Mother's name and she responded coolly that she would tell the doctor
Mother had arrived. I looked at Mother, who was slightly disheveled and had an
agitated, distracted expression. Anger and tears welled up inside me. I felt intensely
sad and protective of her and I wanted to yell at the receptionist, "My mother is sick
and can't help being this way! She poses no threat to you; can't you at least be cordial
to her?"
We were shown into an examining room and as I began trying to get Mother
to sit in the dentist's chair, the dentist and assistant visibly recoiled as if Mother were
an untouchable. I finally got Mother to sit in the chair and the dentist looked at her
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cheek and stated that it was probably a broken tooth and would require an oral
surgeon, so he would give me a referral for an oral surgeon. I pleaded with him to at
least examine her mouth and give me some pain medication in case she began to
experience pain before I could get an appointment with an oral surgeon. The dentist
grudgingly asked Mother to open her mouth, which she did. He examined the swollen
area and reported that it was not what he had thought. He reached into Mother's
mouth with a small pair of tweezers and withdrew a small dried flower. I assumed
that Mother had thought it was food and it had gotten lodged in her mouth, where it
was causing irritation. The dentist commented on several decayed and loose teeth that
may need to be extracted and after he gave me the name of an oral surgeon, he and
his assistant stiffly withdrew from the room.
I called the office of the oral surgeon to make an appointment for Mother and
explained that she had Alzheimer's disease. The receptionist warmly reassured me
that this group of dentists sees many elderly patients, some of whom have dementia,
and they are quite comfortable working with these patients. I was relieved and
touched by the response of every staff member, as well as the dentist in this office.
They were kind and helpful in getting Mother's cooperation throughout the exam.
The surgeon decided that several of Mother's teeth should come out. This
posed the challenge of how to keep Mother calm and cooperative through the surgery,
and it posed the problem that she would not be able to chew very well and would
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have to shift to a diet of soft foods. I consulted with the staff at The Vineyards, and
the chef agreed to puree meat, fruit, and vegetables for Mother's meals.
I had arranged with the nurse at The Vineyards and the staff of the oral
surgeon that, on the day of the surgery, we would give Mother an Ativan tablet before
the surgery and I would be allowed to be in the room with Mother during the surgery.
The Ativan relaxed Mother and she cooperated with the instructions as the dentist
prepared her for the surgery. When he administered a shot of Novocain Mother jerked
back and had the look of an angry, wild animal in her eyes. I held her hand and the
dentist, his staff, and I all talked soothingly to her. She lapsed into a glazed stare,
possibly because of the effects of the Ativan. I stood across the room looking at her
and wondered what it was like for her to have this procedure being done to her, and
not to understand why it was being done. I also remembered that she had insisted on
remaining with me when I had my tonsils taken out at 5 years old.
The shift to soft foods marked another pronounced descent to a new level of
dysfunction. Mother had been using her hands to eat food that was cut into pieces for
her. After the oral surgery, she could still eat things like bananas, berries, and soft
cookies, and she could hold a cup with a straw and drink, but she had to be fed thicker
foods like pureed meats and vegetables. At this new level of deterioration, Mother not
only had to be fed, but she needed to be monitored when she walked because she was
so unsteady on her feet. As we moved into the spring of 2001, it took two caregivers
to get her up and dressed in the morning, and to change her several times throughout
the day, and one caregiver to feed her at each meal. The staff of The Vineyards was,
again, sensitive and supportive in working with me to assess and meet Mother's
needs. They were willing to provide the extra care if I would be willing to pay an
increased monthly fee. There was one problem, however, for which we could find no
solution. The director explained to me that there was no way that caregivers could
monitor Mother's movements at all times, that there were laws against restraining
Mother's movements, and that the state monitored emergency treatment of elders to
be sure frail elders were not being neglected or abused. An eldercare facility can be
cited for negligence if a resident is seen often in the emergency room because of falls.
In early June of 2001 I was preparing for an oral exam as a part of the
completion of my coursework in the depth psychology program, when I received a
call that Mother had again fallen and had been taken to the emergency room, but was
back in The Neighborhood and seemed to be doing well. This incident spiked intense
anxiety and guilt in me. Again two voices were activated in my mind. One said,
"Why am I engaged with this inconsequential work in the study of psychology when
my mother is declining—dying—and needs me." The other voice countered, "I can't
drop out of the program, it means something to me. There must be a way to continue
pursuing my goals and also care for Mother." I moved through my oral exam with
parts of my inner life at odds—a house divided against itself. The experience of
performing for my oral exam was a heightened version of my on-going struggle

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between fulfilling my role of homemaker and caregiver, and meeting academic and
professional goals.
Two weeks after my exam, Mother fell again and I was called. She had
sustained a gash in her head and it was unclear whether she needed stitches. I had
been disappointed that no x-ray had been taken after Mother's last fall which meant
that we didn't know if there were any cracked bones. The reason given for no x-ray
was that there was no treatment for cracked ribs or vertebrae. I understood this, but
the fact that my mother could not talk made it difficult to assess her pain. It would
have been helpful to have known if she had cracked a rib. I decided to be cautious and
take Mother to the emergency room myself for a thorough exam. As I sat in the
emergency exam room with her she seemed unconcerned by the gash in her head. She
was calm and slightly detached. The doctor inserted a needle with numbing
medication right into the middle of the gash and I winced but Mother did not move. I
wondered if her cognitive decline had reached a point where it reduced her sensitivity
to pain.
I was approaching a new turning point in this journey with Mother. I had a
long talk with Ted and he expressed concern about whether The Vineyards had the
capacity to provide for Mother's needs and keep her safe. He acknowledged that this
phase of Alzheimer's disease requires care that is very difficult to find. He said that if
she fell again and required emergency room treatment, he would be obliged to ask me
to either remove her or hire private caregivers to monitor her movements at all times.
I understood Ted's position, but felt a rising tide of panic—the activation of a deeply
entrenched fear that I would not be able to meet the needs of my mother. Hiring
private caregivers would double the $5000 monthly fee that I was already paying for
Mother's care, and was financially impossible. I sought guidance from Sarah, who
knew my mother's needs better than anyone. She agreed to accompany me on a tour
of facilities close to my home. We toured one Alzheimer's facility and one nursing
home. Sarah asked many valuable questions during these tours. We talked after the
tours and Sarah commented on the quality of care provided at these two facilities,
tactfully pointing out that aspects of the caregiving were inferior to the quality of care
provided by The Vineyards.
After touring these facilities, I took my mother in for an appointment with her
internist, hoping that he might provide some guidance in assessing and meeting her
needs. The internist very sensitively stated that Mother had deteriorated considerably
since he last saw her, and suggested that Mother might benefit from the services of
Hospice. I left this appointment stunned by the suggestion that Mother qualified for
Hospice. I knew she had to be within 6 months of death to be eligible for Hospice. I
began to face death more straightforwardly at this point. The movement into the care
of Hospice is, according to my definition of stages, movement into the final stage of
Alzheimer's disease.
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Reflection
Acknowledging my mother's diagnosis and moving her into an Alzheimer's
facility marked a turning point in her life and in my relationship with her. The locked
door between the assisted living wing and the Alzheimer's wing stands out in my
mind as an image of the boundary between ordinary and nonordinary reality. From an
archetypal perspective movement through the locked door and into the nonordinary
reality of the Alzheimer's facility resembles Persephone's involuntary descent to the
underworld. As Persephone was seized by Hades, Lord of the Underworld, so the
residents of an Alzheimer's facility have been seized by a fatal disease that transports
them against their will to nonordinary reality—an altered state of consciousness as
well as a facility where conversations and behavior do not make sense.
The archetypal pattern of Persephone's abduction to the underworld, her
opening to a relationship with Hades, and her cyclic movement in and out, back and
forth, between underworld and upperworld was enacted on several levels throughout
my mother's decline. It was enacted on a literal level as we moved through the locked
door into the Alzheimer's world. It was enacted in our relationship as my mother
moved between a connection with me and disappearance into an altered state of
consciousness. It was enacted in my experience as a caregiver when I was drawn into
the depths of an inner world by feelings, thoughts, symptoms, and dreams that did not
conform to the rules of logic.

As I sat at my mother's bedside after she had been moved to the Alzheimer's
wing, I observed her movement between rational and non-rational modes. She would
be talking coherently with me and suddenly she would become confused and then
agitated. It looked to me as though she were being overcome by an inner experience
that was disorienting and frightening. Her disappearance into a non rational mode
stirred attachment issues in me that had been central in our relationship since my
birth, and continued to be issues in our relationship during her decline. I suspect that
the disorientation Mother experienced stirred attachment issues in her also. According
to attachment theory, derived from psychoanalysis, ethology, and developmental
psychology (Stern, 1985, p. 25), some levels of an infant's experience, such as
behavior patterns focused on maintaining attachment, change during the course of
development, whereas some levels, such as the quality of the mother-infant
relationship, are life-span issues. The psychological issue of attachment plays a
central role in the universal experience of descent to the underworld, as is seen in
Persephone's movement back and forth between her attachment to her mother in the
natural world—the upperworld, and her relationship with Hades and the chthonic
depths—the underworld. Inherent in the issue of attachment is trust—faith—in
something beyond oneself.
As a child, my mother had lacked a secure attachment to her mother and had
sought closeness with the family dog. During her decline she again turned to her dog
for her main connection in the world, and to me. The close but conflicted relationship
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between us continued up to and beyond the moment of her death. Thus, as she
struggled with Hades, Joey and I were her main support and connection in the
upperworld.
Watching her descend and return triggered my own descent into a maelstrom
of images and feelings. When in the grip of these feelings, I tried to ground myself by
tending Mother and formulating strategies. When I allowed the feelings and did not
defend against them by moving too quickly into strategizing and action, or when I
was overwhelmed by the feelings and forced to accept the sovereignty of Hades, the
spirit of Hermes would appear as a guide in the undercurrents and lead me to the heart
of the situation—what was compelling for me. Sitting by her bed, I realized what was
most important: to maintain a connection—a real relationship with Mother. As I
reflect on this compulsion, I see that it was driven by love and attachment issues on a
personal level and, on a universal level, by existential anxiety in the face of death.
Another central realization that came to me while sitting by her bed was that I
was not capable of caring for her on my own. I discovered, during the continual cycle
of descent and return, that I knew where the fine line was for me between miser and
martyr in caring for my mother. I descended into intense feelings of guilt, anxiety,
grief, and love, and experienced disturbing symptoms and dreams many times during
Mother's decline, but apprehending the fine line helped me chart my course on the
journey through Alzheimer's disease.

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Mother's first months in The Neighborhood required that we both acclimate to
the world beyond the locked door. It was like dropping through the rabbit hole into
Wonderland, where one cannot make sense of conversations and behaviors and feels
out of control. Jung and Hillman describe loss of control as a death experience for the
disoriented ego during which, if the ego can tolerate and open to rather than defend
against what is happening, an emptiness and then a still point are experienced,
allowing for a new way of seeing things—a way not determined by ego agendas. Jung
maintained that during this death experience one does not see anything new, but sees
in a new way. As I adjusted to the strange reality of life in the Alzheimer's wing, I
slowly moved from seeing the residents' irrational behavior as meaningless to
looking at it as a cryptic message that challenged me to decipher it. Often their
irrational behavior was an indication that they were frightened, angry, or sad. I
increasingly began to rely on reading the nuances of body language and on intuitive
knowledge drawn from feelings and images stirred in me during interactions with
residents, as ways to understand their inner life—their needs and concerns. These
methods of gathering data, as discussed in Chapter 2, are imprecise because they are
colored by my subjective lens; but they are valuable because my subjective lens sees
into areas of human experience that are inaccessible to a more objective lens. This is
akin to descriptions of work with comatose people in which an empathic connection
results in heightened communication potential and remarkable insights (Mindell,
1999).
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Unfortunately, there were times during my mother's decline when I was not
empathic, when I looked at her through Demeter's upperworld eye, not Persephone's
eye. As I reflect on the first Christmas after I moved Mother to California and
remember her irritability when Joey left her side, I understand her lashing out at me
("This is your home. I don't have a home.") as a soul lost in an alien place. She had
literally and figuratively lost her home base, and I was often too busy with
upperworld agendas to empathize. I imagine she must have felt a desperate need for
attachment to a familiar object, and the only constant presence that provided her with
love and acceptance was Joey. My presence was less constant and not always
accepting. My family and I drew her into momentary connection on Christmas night
by dancing with her, and it was as if, in the act of dancing with us to familiar music,
she remembered and returned to a relationship with us and her agitation subsided. She
was able to engage reciprocally with us during dinner. Music, as a means of accessing
the "garden of your personality" (Freidell, 2004b), became my most valuable
resource in maintaining a connection with my mother.
When we broke the connection with Mother on Christmas night by putting her
to bed in her own room, I suspect she experienced confusion and fear all night. I did
not understand, at the time, why she became agitated in certain situations. When I
went to her room on the morning after Christmas and saw her agitation, I did not
know what she needed. I think now of Thomas DeBaggio's description of nights of
confusion and terror even though he was sleeping next to his wife. This raises the
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question of whether this fear and agitation would be mitigated by a caregiver who
meets the qualifications Michael Kearney describes, one familiar with the depths of
inner life and with descents to this underworld, who can guide and support the
journey through darkness and chaos into death. This question is related to one posed
in the introduction of this study, asking what impact the negative cultural attitude
toward dementia and the dying process has on those with Alzheimer's disease and on
their caregivers. Would I have been able to alleviate my mother's agitation, support
her better, and help her find peace if I had understood her psychological state as a
cyclical journey similar to Persephone's descent and return, with a meaning similar to
the descent in the ritual of the Eleusinian Mystery? Could I have established a
caregiving team that provided on-going support—understanding and guidance—as
she moved between ordinary and nonordinary reality? An intense, heavy pain moves
into my heart as I describe her distress at Christmas and remember that I took her
back to The Neighborhood where people were kind to her and helped her with her
daily needs, but where she very likely spent much of her time in the underworld
feeling confused and distressed—alone and afraid.
My first-hand experiences in The Neighborhood allowed me to look closely at
the nature of the nonordinary world of Alzheimer's disease, and to see the underworld
dimension revealed in the faces, body language, and behavior of the residents. When I
entered The Neighborhood, I often encountered a group of residents hovering near the
locked door. They would move toward me and ask questions in an effort to reduce
their anxiety and confusion. There we stood, forced by their condition into an alien,
irrational world where familiar ways of relating and coping are disabled. As I reflect
on my participation in this world, I am reminded of the vision of certain poets and
their images of the underworld. I think of Dante's (1971) image of the gateway to the
underworld over which is inscribed, "Abandon Every Hope, Ye That Enter" (p. 47).
In the view of Western culture, the residents who pass through the locked door of an
Alzheimer's facility are doomed—there is no hope for them.
When I made jam and bread in The Neighborhood, the residents gathered
around me just as the shades gathered around Dante and Ulysses during their visits in
the underworld. As in Dante's Inferno, the mode in the world of Alzheimer's was
repetition rather than linear progression. The residents asked the same questions over
and over: "What time is it?"—"Can I get a cup of coffee?"—"When am I going
home?" The emotional and spiritual tone underlying the behavior and questions of the
residents resembled Homer's image of the underworld where it is gloomy and dark
with marsh plants and drooping shrubs and where, "The dead roam around in troopes,
weak, hungry, with neither will nor memory, without any motives other than a vague
instinct which drives them to seek the libations and the victims blood which is shed
for them" (D'Alviella, 1981, p. 62).
As I recall interactions with my mother in The Neighborhood, the memory of
the last time she said my name stands out in my mind. After that time, my efforts to
hug Mother became increasingly like Ulysses' effort to hug his mother who "only
recognizes him after drinking the black blood in her turn. He tries three times in vain
to embrace the beloved shade: he grasps only air. . . . Verily in the abode of Hades,
there remains a soul and an image but absolutely no content" (D'Alviella, 1981, p.
62). As Ulysses offered black blood to stir his mother's recognition of him, so I
would feed my mother a familiar phrase or song and occasionally stir her recognition
of me.
The underworld is an invisible world that exists within the upperworld. In the
upperworld of The Neighborhood I saw the staff respond cheerfully to the questions
and needs of the residents, I saw attractive decor, and I saw residents' bodies which
were aged but in most cases not suffering physical pain. I perceived the underworld
reality as it manifested in irrational conversations, expressions, and behavior that
resembled the shades described by Homer. The residents were enacting the
underworld motif as they wandered aimlessly, hovered in groups with neither will nor
memory and, like the previously mentioned shades in the underworld, were "driven
by a vague instinct to seek libations and the victim's blood which is shed for them."
Genuinely caring for these residents by listening, sharing a meal, dancing, or sitting
close is the blood sacrifice in the world of Alzheimer's disease. It is a sacrifice of
time, energy, and attention—a giving from the heart. Often I saw the residents' eyes
grow bright when they accessed memories or feelings during an engagement with
someone who was attuned to them. I saw this happen one evening when I had dinner
with my mother and Kate after a group of high school students had spent time in The
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Neighborhood. I had arrived while the students were sitting with the residents and
noticed a warm connection between Kate and a young woman. At dinner Kate
recounted, "I didn't know . . . but, I thought. . . give it a chance . . . it worked."
As I became familiar with the two worlds that coexisted in The
Neighborhood, I felt pulled between attending to upperworld agendas and
surrendering to the underworld. The residents of The Neighborhood had been
separated from family and community and, unlike the descent of the initiates of the
Eleusinian Mystery, the descent of Alzheimer's residents is not supported as a
process that has meaning. As Michael Meade (1995) observed, "When the inner
purpose and spirit of a person do not get revealed, re-valued and acknowledged by an
appropriate community, people increasingly feel like victims and act like outcasts" (p.
xxiii). I think the fact that those with Alzheimer's disease are often regarded as
pariahs is one factor that motivates their agitated behavior. Many stories of caregiving
for those with Alzheimer's disease describe instances of love in response to suffering,
but even in these stories there is an absence of a community that supports and
participates in rituals that reveal and re-value the inner purpose and spirit of those
with Alzheimer's disease.
The shift I needed to make in order to support my mother's descents to the
underworld is aptly described in the following story of the mythic wounded healer,
Chiron, who descends to the underworld:
And as he waited, allowing that he might be in a place of wisdom, something

strange began to happen. At first the moving shades barely caught his
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attention. They appeared bloodless and uninteresting, and their movement

seemed illogical and chaotic. However, with time he began to find himself
attending to their musings more closely. Although he could neither understand
their language nor their actions, he began to feel that they had significance.
This sense of significance was a very different thing from that clear analytical
insight for which he had been renowned during his life in the upperworld.
Here was something emotional and physical rather than intellectual,
something that touched him in the pit of his stomach, filling him with a
wordless sense of meaning. Chiron was being initiated into the mysteries of
depth. (Kearney, 1997, p. 177)
Kearney defines the depths as "the normally unconscious and intuitive aspects of
mind," and the deep center as the essence of who we are (p. 59).
The process of being initiated into the mysteries of depth was fraught for me
with the necessity of meeting Mother's needs while not neglecting my own, and with
the pain and anxiety stirred in me by her situation. There were times when I used an
upperworld lens and failed to notice the underworld dimension and times when my
dayworld agendas were derailed and I was forced to acknowledge the underworld.
During the night I spent with Mother after I removed Joey, I felt like an
observer from another planet, or dimension of reality. I enacted Chiron's first
response, seeing the shades as illogical and chaotic. I was driven by dayworld
agendas and did not acknowledge and respect the underworld depths. I was intent on
assessing her response to Joey's absence and hoped she was too confused to be
affected. It is noteworthy that she did not know who I was, but asked where Joey was.
I suppressed my knowledge that Mother's relationship with Joey was a heart
relationship that would endure regardless of cognitive deficits. Hence, I concluded
that Mother was not affected by the loss of Joey. Sarah, the exceptional caregiver who
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was one of my interview subjects, watched my mother through a different lens and
saw the loss she experienced.
Each time Mother descended to a pronounced lower level of cognitive
dysfunction, she would express anger and resistance, fiercely trying to maintain her
independence. This would be followed by what seemed like resignation and reduced
animation. My goal in responding to each descent to a lower level was to find ways to
communicate with her and meet her needs without humiliating her. My responses
followed a pattern of anxious efforts to help her, frustration when she resisted,
descent into my own depths where, at some point, connecting with her took
precedence over upperworld agendas.
This pattern of response was activated when I brought Mother and Joey to my
home after the earthquake. I grew increasingly frustrated and irritable with her, and
she responded in kind. The turning point in this struggle came when I sat by her bed
in the emergency room and asked if she were upset with me. After she nodded "yes"
and I apologized, we were both silent and, I believe, both of us sank into the depths of
our own feelings and the feelings between us. In these depths we found a connection.
As I look back on this pattern in my experience of caregiving, I see my
intensity as a manic defense, at times, against the pain and hopelessness of Mother's
situation. I was behaving like Demeter who felt anxiety and anguish in response to
the disappearance of a loved one. When I sank into the depths and sat still with
Mother, I got a glimpse of the nature of her relationship with Hades, and was forced
to see what was in the shadows of our upperworld experience—the invisibles of the
underworld. The invisibles included feelings and needs that had been denied,
devalued, or untended. For example, I often tried to be cheerful with Mother and
multitask so that I could make the most of my time with her. When I was in this
mode, there was no time to feel the loss we were both experiencing. Hillman believes
that when people forget the invisibles, the invisibles are acted out in diseases
(Hillman, 1975, p. 14). When I tried to move Mother through the daily routines
without acknowledging the presence of the underworld dimension, she responded
with agitation and I lost my connection with her. I regained it by descending into the
depths of chaos and intense feelings.
The mythic pattern of descent and return that I was experiencing is an
inevitable result of human development, as ego concerns gradually dominate
consciousness and crowd out many feelings of the soul. Reconnecting with this lost
part of the soul requires descent into the deepest fears, pain, and confusion. I was
acting out the archetypal pattern of movement between an upperworld, Demeter mode
driven by ego concerns, and an underworld Persephone mode—driven by feelings
stirred in the depths of my unconscious. I experienced the descent as loss of control,
energy, meaning, and hope. In psychological terms my ego was overcome by
unconscious forces. I made anxious attempts to regain control—to escape from the
underworld—by strategizing and solving problems.

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Carl Jung considered that the ego's efforts to avoid and escape from
experiences of the unconscious can lead to neurotic suffering which is a substitute for
legitimate suffering. When the ego is in danger of being overpowered by unconscious
forces, it frantically tries to regain control by using such defenses as repression or
compulsive behavior to ward off these forces. An ego with the capacity to
acknowledge, endure, engage with, and integrate these unconscious forces allows for
the possibility of a genuine rebirth, a psychological transformation, rather than a
neurotic compromise forced by a frantic ego. The miserable moments during my
mother's decline when I acknowledged my powerlessness and sat quietly with the
feelings were, I believe, moments of initiation into the mystery of the underworld.
There were many of these initiatory moments and many of them were related
to Mother's frequent bouts of diarrhea. As she descended to lower levels of
deterioration, one of the main caregiving tasks was to clean up urine and feces. When
I was with her and she had an attack of diarrhea, it usually initiated the descent and
return pattern in me. I would feel repulsed by the foul smell and the mess, anguish
that she could not control her bowels, concern that the diarrhea might be a symptom
of illness or anxiety, concern that she would feel humiliated by the mess, guilt that I
was paying others to clean up most of her messes, and relief that I could pay others to
clean most of her messes. Engaging in cleaning up the mess (not an item on my ego's
agenda) was, literally and metaphorically, an engagement with the underworld
dimension of Mother's disintegration. She could not control her body, and her body
was decomposing. Her messes also triggered a fear that I will be in her place in 10-20
years, and a sense of despair that Mother was leaving me and I was powerless to stop
the process.
Once, as I was preparing to walk with Mother to the dining room where I had
planned to get her settled at a table and then leave, she had a massive attack of
diarrhea. She looked confused, embarrassed, and uncomfortable. My heart sank. I did
not want to desert her or dump the mess on a caregiver, but I also had errands to do
and an appointment. I felt pulled between concern and resentment, between
conflicting priorities of Mother's needs and my own needs and commitments. I
decided to stay and clean her and, as in previous accounts of my reaching out to her
when she was in distress, I descended into a timeless mess and found a connection
with Mother. As I put clean clothes on her, I enjoyed the closeness and the sense of
being in the moment, with all other agendas put aside.
Looking back on this stage of Mother's Alzheimer's disease, I see that the
main difficulty for me was the transition between outerworld agendas and descents
into the chaotic underworld of my mother's situation. There was sometimes a strong
pull, when I joined Mother and felt close to her and free from dayworld agendas, to
stay with her in the underworld. During these timeless moments, I enacted
Persephone's movement into the depths which, Hillman (1979) maintains, represents
a movement of soul from defense against Hades to love for him (p. 208).
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As I watched Mother's body deteriorate, I continued to feel her presence in
certain nuances and gestures of her body. Using an archetypal lens, I see that my
mother's transformation into a gaunt, increasingly less substantial and less animated
body was the process of a physical being becoming a shade—a shadow of what she
once was. Kerenyi (1967) describes the shades in the realm of Hades as images "with
which the individual, through his uniqueness, has enriched the world" and he sees the
mythic figure of Persephone as
that which constitutes the structure of the living creative apart from this
endlessly repeated drama of coming-to-be and passing away, namely the
uniqueness of the individual and its enthrallment to non-being, uniqueness and
non-being understood not philosophically but envisaged corporeally in
figures, or rather as these are envisaged in the formless, unsubstantial realm of
Hades, (pp. 123-124)
Thus Kerenyi interprets Persephone as the uniqueness of a particular human body, the
structure of the living creative that enlivens a physical substance, and its enthrallment
to the underworld realm of nonbeing. The idea of nonbeing in Greek religion,
according to Kerenyi, "forms the root aspect of being" (p. 120).
Jungian analyst Nathan Schwartz-Salant (1982) further elaborates this idea by
pointing out, "In the individual this sense of uniqueness comes from embodiment. . . .
The archetype too wants to develop, and this development is dependent upon its
uniqueness being expressed" (p. 148). Schwartz-Salant interprets Persephone as
"archetype of everyone's departed, or lost, soul (p. 154). This view that embodiment
is necessary for expression of an individual's uniqueness speaks to my belief that soul

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and body are intricately interwoven and that this relationship must be considered in
tending the inner needs of those who have Alzheimer's disease.
The relationship between body and soul took on new meaning as Mother
moved closer to death. Her body held and expressed her soul and provided a link
between me and her soul. When her doctor suggested that she receive the services of
Hospice, I faced the reality that I would soon lose her body. I felt a compelling sense
of urgency to be close to her during this last phase of her life. From an archetypal
perspective, as an initiate I had found value in the realm of Hades, but was confused
and disturbed by the mystery of descent and return. I found the transition between
upperworld and underworld difficult, and I was increasingly agitated about the fact
that Hades' claim on my mother would remove her body from me, thereby removing
the link that had always been there for me. As I faced the imminence of Mother's
death, I felt a compelling desire to communicate my love for her and to support her so
that she could die at peace. I again sank into the chaos of my inner life, where I
struggled with the voices. One was saying, "I have no meaningful rituals, no guides,
no supportive community. I don't know how to give my mother the support she
needs. I'm afraid I won't do it right." The other voice said, "If you don't do it, who
will?"
CHAPTER 5
LATE-STAGE ALZHEIMER'S DISEASE
Narrative
Introduction
In this chapter I tell of the final stage of my mother's journey through
Alzheimer's disease into death. For the previous 2 years I had been so absorbed in the
challenges of her decline that I had not spent much time thinking about the fact that
she would soon be dead. When I began a relationship with the Hospice staff, I
realized that I needed resources to support the experience of death. I began to attend
more closely to my inner images, dreams, and symptoms and sought support from
several traditions—Christianity, Judaism, Buddhism, Jungian and archetypal
psychology, and shamanism. As in the last two chapters, the Narrative of this chapter
presents the data of the experience and the Reflection analyzes the data by looking
through an archetypal lens for themes—derivatives—of the myth of Persephone.
Enrollment in Hospice
I made an appointment with Hospice of Napa and during the initial interview
dissolved in tears, as I had when Mother was moved to the Alzheimer's wing and her
diagnosis was confirmed. The sensitive Hospice counselor explained the services of
Hospice and helped me map out a plan for meeting Mother's needs. I then met with
Ted, who explained that The Vineyards has a license which permits residents who are
enrolled in Hospice to remain in familiar surroundings. Ted felt less concerned about
The Vineyards meeting Mother's needs because Hospice was involved. He assured
me that he and the rest of the staff were very fond of my mother and would do
everything possible to keep her safe and cooperate with Hospice. We established a
routine for Mother that reduced the risk of falling. Caregivers would put her in a
recliner in the living room with her feet up each morning and escort her to meals and
to her room at nap and bedtime. Three days after the devastation of 9/11,1 signed a
form saying that I "allow and request that my mother, Marjorie Blacken, receive
Hospice services." It was a literal acknowledgement of the imminence of death.
Journal of Experiences While Living in an Alzheimer's Facility
On October 13, 2001, the day after my parent's 61 st wedding anniversary, a
caregiver called early in the morning to inform me that Mother had had a seizure—a
signal of the next major descent in her decline. I had been planning to spend 2 weeks
with Mother in order to monitor her needs, so I moved my plans ahead. I packed
clothes, sleeping bag, books, and CD's of music she likes—The Mills Brothers,
Strauss waltzes, Glen Miller—and set out for The Vineyards.
The drive to Napa. Beautiful fall day; sun bright, green leaves in the vineyards
tinged with gold and red. Mike drives behind me to support me in whatever I will
face with Mother. Tears come as I wonder if this is the end.
Memories of her. Singing together while cooking for holiday meals; arguing
with her; images of her deterioration over the past 2 years.

Feelings about her. Worry! I want her to feel loved and well-cared for.
Resentment. So much money and effort to care for her. She didn't care for her
mother, my grandmother, at the end of her life. Guilt. I'm not caring for her myself.
Arrival at the Vineyards. Mother very agitated—making noises like a baby,
"pa-pa-pa-pa-pa." I ask the Hospice nurse, Judy, about a hospital bed." Definitely,"
says Judy. She orders a hospital bed, writes out a prescription for Ativan to address
Mother's agitation, and expresses concern that Mother's needs might be better met in
the setting of a bed and board.
A hospital bed arrives and the caregivers help us transfer Mother to the
hospital bed. We move the double bed to an empty room. We are then visited by two
members of the management who express dismay at the full rails on the hospital bed:
"Federal regulations don't allow beds with full rails in assisted living facilities. The
Vineyards could get a citation."
Mike goes to the pharmacy for a prescription of Ativan. Little did I know how
much I would come to value this drug. Once the Ativan takes hold, Mother is out—in
a deep sleep and very easy to care for. Mike leaves and I settle into bed. From my
futon on the floor next to Mother's bed, I watch her as she sleeps deeply and wonder
if she will come back to her previous level of functioning.
Monday, October 15, 2001.1 awaken feeling driven to assess Mother's needs
and find resources for her. I have asked that the Ativan be discontinued because it
seems to keep her almost comatose. I want to evaluate her postseizure level of
functioning. The evening Ativan was not given to her, so she is more alert this
morning than she has been since her seizure. Juanita and Carmen change her, dress
her, and wheel her to breakfast. I set up a book where caretakers can keep a record of
when she's changed and given meds as well as a place for noting problems and
suggestions. Two of my goals during my stay with Mother are to establish a daily
routine that works, and to coordinate the treatment plan with each member of The
Vineyards and the Hospice staff. As I'm in the midst of this, Carmen brings Mother
back because she's falling asleep. I ask what meds were given at breakfast and
Carmen says that Mother was given Motrin and Ativan. The message hadn't gotten
through to the a.m. med-tech that we are discontinuing Ativan today.
I settle her first in a chair. She can't sit up, too sleepy, so Carmen helps me
settle her in bed. I sit next to her on her bed for 2 hours and hold her. She snuggles up
to me. I feel teary and reminisce about stories she told me of her childhood. I look at
the pictures of her parents, grandmother, and great grandmother. She told me that she
used to brush her great grandmother's long, thick, white hair. I wonder if my
grandparents are present in any capacity. Are they close to us, watching over us? I
imagine that they are trying to communicate with me, that they are talking to Mother,
and that she can hear and see them, but I can't. I close my eyes and see a figure, an
image in my mind's eye. It looks like my grandmother. Then I see another image of
someone sitting in a chair. This figure is closer to me and sitting in the center of my
view. In the spatial composition of these images, my grandmother is at the top of the
picture and more distant, the figure in the chair is closer, more central. I study the
figure as it sits, looking straight ahead. I'm looking at its right profile and, like a
photograph that is slowly developing, the figure moves into sharper focus and I
recognize that it is my father. I feel excited and relieved at the possibility that he is
present. I savor this experience for a while, and then begin to feel bored. I want to
read Book of Hours which I bought as a possible source of inspiration. I manage to
hold the book with one hand and Mother with the other arm. I open to a passage that
discusses the importance of living in the now. I guess this is the lesson, over and over.
Slow down. Bel So hard. I feel the press of so many concerns. As I write this I feel
very uneasy about how to record this experience—how to process the Alzheimer's
experience.
Mother finally falls into a deep sleep. I set off to attend to things on my list. I
want to get groceries so I can bake tonight. I need to make phone calls to coordinate
with Hospice and to make an appointment to visit a bed and board facility. When I
return from shopping, Mother is still sleeping. Carmen and I change her. I spend an
hour sorting through her things, pulling out summer clothes that she doesn't need now
and may or may not need next summer. I make a pile of clothes to be given to
Goodwill and a pile of some, like a sweater that my grandmother knitted, that I will
tuck in a corner of my home because I can't bear to give them away. The line
becomes blurred in this sorting process between what is mine and what is my
mother's.
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Some of the clothes stir memories. There is a black skirt that reminds me of
shopping with Mother and Aunt Effie when they were visiting for Thanksgiving.
They were competitive with each other and a handful for the saleswoman. My aunt
was treating and we each chose a black skirt and sweaters—green for me, pink for my
aunt, and blue for Mother. We wore them to dinner that night. These happy memories
are precious.
I feel good about making the room less cluttered, and go off to my
appointment with Jeanne, manager of a highly recommended bed and board. Jeanne is
friendly and seems very competent, and the house is what I expected—small and
homey. There are only four residents and Jeanne treats them like her children. I leave
feeling torn between the value of a family setting and concern that Mother, even with
dementia, does not respond well to a patronizing attitude.
I come back ready to sit with Mother and to try to connect with her. She is
eating dinner and, as I take over feeding her, she begins grinding her teeth and is not
friendly to me. I wheel her into her room, put Glen Miller on and set up a tray with
my dinner on it. Mother is agitated, taps her foot to the music, but no warm looks. I
feel disappointed, and flooded by a familiar anxiety that I've displeased her—haven't
measured up to her expectations. I've been too intense, too much of a doer.
Luisa and Carmen come in to change Mother and are very sweet and gentle.
I'm impressed at their skill and at the fact that it takes two people to change Mother.
They position themselves on either side of Mother's wheelchair and talk to her as
they are moving her so that she will cooperate: "Marge, we're going to stand up—ok,
we're going to stand up—one, two three; Marge, honey, let go of my arm. Can you
walk over to the bed? We're going to lie down, ok?" Mother smiles and responds
warmly to them. I feel rejected, and that I've failed in my efforts to care for her in a
sensitive way.
After changing Mother Carmen takes her to the dining area and sets her up in
a recliner so she can watch me bake cookies. I hope the baking will create a warm,
homey feeling that will be nurturing to Mother, and the other residents. Mother is
wide awake, grinding her teeth and looking agitated. The cookie baking is hectic. I
feel distracted and the cookies don't turn out well. I'm feeling like a failure—nothing
I do seems to go right.
Luisa wheels Mother to her room and Luisa and Vicky get her ready for bed.
Vicky recites a nursery rhyme, kisses Mother, and asks if she's comfortable. Mother
smiles and, like a small child, says sweetly, "yahhh." I feel awkward. I don't say
much to Mother. I don't know what to say. I don't want to make small talk, she hated
small talk. Memories of her disdain fill my mind.
I sit for a long time, feeling deflated and listening to her grit her teeth. I finally
get ready for bed and kiss her goodnight. She stares with no response. After 2 hours
of teeth-grinding, I call the med tech and ask her to give Mother an Ativan. Finally,
she grows calm and quits grinding her teeth. What's going on in her mind? I felt an
intense wrench as I wondered what she was feeling. While I was holding her hand
before the Ativan took effect, she looked at me and said, "Lonely."
As a means of trying to understand her, I decide to use Jung's technique of active
imagination:
Kris: Mother, what are you thinking when you're so agitated?
Mother: You're moving too fast, Kris. My mind and body are old and
slow. Respect this, it will happen to you. It will have value for
you if you slow down, attune to me, tend me. Be with me.
Kris: I'm trying, but there's so much to do. You said you're lonely.
How can I help?
Mother: I repeat. Slow down. Be with me.
Kris: What do you want now, calmed by Ativan?
Mother: I want to roll over. My body wants to move.
Kris: What are you feeling?

Mother: I'd like to float—be free—move easily. My mind is old. I'm
seeing—experiencing—things you can't see and understand.
Much is going on in my mind.
Kris: What?
Mother: That will be our work in the coming days.
Kris: I love you, Mother.
Tuesday, October 16, 2001.1 wake up at 7:30 feeling exhausted and
discouraged. Maria and Carmen come in to change Mother and take her to breakfast. I
have a cup of tea and make the following entry:
So, I'm really discouraged and depressed—and lost. I don't really have
anyone to turn to, to confer with—to be with me. I feel so torn about whether
to follow the Hospice nurse's advice and move Mother to a bed and board.
Something about doing this makes me very sad. Is it my attachment to The
Vineyards—my attachment to a lovely, well-run facility? Yesterday was so
difficult with Mother. First she was so drugged she could hardly sit up at
breakfast. She spit up and coughed—does she have a cold? A sore throat? It's
so hard to try to figure out what her needs are.
When I finish with my journal, I check on Mother and she's in a recliner in
the living room, staring into space. She's much more alert without the Ativan in the
morning. I leave for an afternoon of seeing clients. My son has generously agreed to
spend time with her for the afternoon. I return to discover that the full rails on her
hospital bed have been replaced by half-rails (because of regulations) and the bed has
been raised to the highest level, the bars lowered to the bed level. I walk my son to his
car and when I return, Mother is half off the bed and her leg is caught in the rail. I'm
furious. Regulations seem to be more important than my mother's safety. I find the
mattress of her bed in the empty room, drag it back to her room, and move the
hospital bed to make room for the mattress. I get help to move Mother back onto her
mattress. She grows increasingly agitated during all this activity. She is changed and I
request an Ativan tablet for her. I sit close, holding her hand until she finally quits
grinding her teeth. I climb into the hospital bed (no room for my futon).
Strange. I'm sleeping where she did. I could be in her position someday:
Demented, agitated, medicated—in a hospital bed;

unable to speak—to say I'm hungry, thirsty, cold, hot, in pain;
unable to eat what I want, to go where I want, to go to the bathroom;
entirely dependent on others—moved, lifted, fed, changed.
What would I feel and think?
What is she thinking, feeling?
I can't sleep, so I dialogue with Mother:
Kris: Mother, are you upset with me?
Mother: Yes, still you race around. You don't meet me where I am.
Kris: What do you mean? What would that look like?

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Mother: Slow to my pace—meditative, not exasperated, bored, antsy,
officious. Move into my space.
Kris: I'll try, but I don't know if I can.
Mother: You can. I'll help you. Listen. Be guided by my signals and
your inner wisdom.
Wednesday, October 17, 2001. Mother is at breakfast. She was less irritable
with me this morning, when I helped change her. I seek guidance by reading Music of
Silence (Steindl-Rast & Lebell, 2002) a book about the monastic, contemplative
tradition of observing the hours, or seasons, of the day. Tears well up as I read. I
realize how thirsty I am for spiritual food. The passage I opened to explains the
canonical hour of Vigils: the womb of silence, the longest hour, the hour before
dawn—the time for learning to trust the darkness (p. 20). I'm very much in the dark
now, desperate for a sign, for help in making the decision of whether to move Mother
to the more intimate environment of the bed and board—the kind of caregiving I feel
that I should be giving Mother, and desperate for a connection with Mother. Maybe a
dialogue will help:
Kris: God, I need a sign—something to guide me in my decision
about where my mother should live now.
God: Ask your mother, look closely, listen well today, Kris.
Kris: Mother, what do you need now?
Mother: I need what you're giving me, Kris. You're watching me,
listening, caring.
Kris: I can't tell where you'll get the best care.
Mother: Watch and listen.

I turn back to the Music of Silence (Steindl-Rast & Lebell, 2002) to look for
clues. I read that Vigils, the hour of darkness, is an hour, or season, of mystery—a
time to shut one's eyes, to meet the mystery of silence and darkness with courage
despite the fear it triggers, that darkness is an image and symbol for the divine
mystery, nothingness (no-thing-ness) of the divine realm. Darkness holds everything
and "maybe in this darkness a great energy stirs right near me" (p. 22). Steindl-Rast
draws from the Gospel of John to explain inner darkness as a divine mystery: "the
very darkness shines . . . when we find ourselves in inner darkness, we cry out with
the prophet, watchman, when is it going to be over?" The challenge is to look deeply
enough to discover that this darkness is all we need—we can find in it what we are
looking for. The hour of Vigils is the hour of expectant listening that precedes word
and action (p. 22).
After the nourishment of these words, I make some calls, shop, and prepare
for a visit with Mother to Jeanne's bed and board. Carmen helps me change Mother
and get her into a wheelchair. We take her to my car and, with great effort, get her
into the car. The visit goes well. I'm thinking this is a sign that I should move Mother.
Back to The Vineyards for lunch—I help set Mother up for lunch and leave to
get lunch for myself at a deli. When I return Mother is in bed, so I nap on her couch
and then meet with Ted and arrange for a podiatrist, haircut and bath for Mother.
There is a guitar player in the living room playing "You Are My Sunshine." Wish
Mother were there. Carmen and I get her up, into the wheelchair, and into the dining
room. I feed her and then turn her over to Judy so that I can eat dinner. While I'm
eating, Susan peeks in to tell me mother is in her wheelchair alone in the dining room.
The caregivers have a crisis. I finish my dinner in the dining room and then sit on the
couch with Mother and watch TV with the residents.
Carmen and Missy, a new caregiver, bring George in and transfer him from
his wheelchair to a recliner. They begin talking with me about The Neighborhood. At
one point, Carmen says that she's saving for a house so that she can care for her
parents at home, because she could never afford to put her parents in a place like The
Neighborhood. Missy responds, "That's the way you should care for your parents, in
your own home." I say nothing, but feel intense sadness.
During this conversation Sarah comes to help me wheel Mother to her room,
change her, and get her ready for bed. I settle into bed and every 2 hours in comes
Donna. She's brusque in turning and changing Mother. Mother yells loudly "OW,
DON'T DO THAT!" Donna says, over her shoulder in my direction, I'm not hurting
her. Mother would start grinding her teeth when Donna came in the room.
I lie in my sleeping bag on the futon feeling increasingly anxious and wish I
had some Turns for the intense heartburn I'm experiencing. I'm struggling with
insomnia and inner voices. One is saying that I'm allowing my mother to be
mistreated and I should confront Donna. The other voice responds that I could stir
antagonism in Donna by confronting her and she might be even harsher to Mother
when I'm not with her. Guilt drives the struggle, guilt because I didn't stand up for
Mother, and guilt that I am allowing her to be in a facility where she is at the mercy
of a harsh caregiver. Gradually, a plan of action evolves. I get up and sit next to
Mother and tell her I'm sorry that Donna was so harsh. I rub Mother's back hoping
she'll stop grinding her teeth, but she continues. I decide to talk to Donna. I find her
on the patio smoking and I explain that my mother does not complain when other
caregivers change her, possibly because the daytime caregivers work in teams of two
when changing Mother, and because they move slowly and talk to Mother while
changing her. I'm greatly relieved when Donna responds positively to my concern
and says she will get the other night-time caregiver to help with Mother, and she will
try to move more slowly and talk to Mother. For the rest of my stay in The
Neighborhood, Donna was good to her word in being gentler with Mother.
I return to Mother and tell her that I've asked Donna to be gentler. Mother
continues to grind her teeth and doesn't acknowledge me. The next time Donna
comes to change Mother, she doesn't cry out, but she continues to grind, which keeps
me awake. I worry that the grinding is a sign of pain or anxiety. I consult with the
night-time med tech who examines Mother and gives her another Ativan tablet. I put
John Galway's Celtic Minstrel CD on and rub Mother's back hoping she'll fall
asleep. She doesn't. She grinds most of the night. I feel helpless and uncomfortable
because of the heartburn, and my growing anxiety borders on a panic attack. I try
praying and meditating but find no relief.

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Thursday, October 18, 2001.1 wake up at 6:30 when the caregivers come in to
change Mother. She seems sleepy and I'm very sleepy. After they change Mother, I
tell the girls to come back later. Mother and I rest peacefully—no teeth-gritting. She's
moving and turning slowly—as you do when you're waking up. Occasionally she
murmurs "ooohhh" or "mmmm" and once or twice a word I can't distinguish. From
the futon on the floor next to her bed I can see her face. Her eyes open, then half
close, then open. She looks at me and looks away, no expression of surprise or
recognition. The blinds are closed but the early morning sun lights the room. The
window is open and I can hear the fountain in the courtyard—pleasant water sounds.
The early morning air is cool, not cold. I enjoy curling up in my sleeping bag. It's
nice to be with my Mother when she seems content—not grinding her teeth or
restless. I think of when my sons were babies and they were resting peacefully. I get
up at 8:30 and make some Sleepytime tea. I put Mother's in a plastic cup with a straw
and make sure it's not too hot. She refuses it. I guess a cup of tea loses its appeal
when it's tepid and in a plastic cup. I offer her some apple juice and she drinks one
and a half cups. Carmen comes in and we change Mother. We set her in a chair and I
give her a banana, which she seems to enjoy. I have some music playing and we sit
quietly together for about an hour. I watch her try several times to stand up. First, her
face grows intent and she moves forward in the chair but she can't lift herself out of
the chair. I feel relieved, and feel guilty that I'm relieved. She will be easier to care
for now that she can't get up and walk on her own, but it feels perverse to be glad that
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my mother can no longer walk. Carmen takes her to the dining room for breakfast and
I luxuriate in a shower and then go to Wal-Mart for another mattress cover and socks.
I return at 12:30 and feed Mother strawberries I bought at a farmer's market
and then hold her pureed meal so she can drink it. I settle her in the recliner and have
lunch on the patio. After this I check on Mother and she's gritting which, I think,
means she's tired. I get Carmen to help me change her and tuck her in bed for a nap. I
sit next to her for 1 hour. She quits grinding and dozes. I watch the autumn light as it
shines on the flowers in the bedspread. First the flowers are bright and then, as the
sun goes down, the flowers grow dim.
Luisa and Vicky come in at 5:00 to change Mother and I take her to the dining
room. She's in a good mood. We sit with Betty and Isabel. I feed Mother and she gets
irritated with me and says "No!" when I try to take an empty glass from her. After she
finishes dinner, I move her to a recliner and feed her ice cream and leave her in the
recliner with other residents who are watching TV. I have dinner in Mother's room,
surrounded by family pictures, and reminisce. Luisa and Vicky knock and then bring
Mother into the bathroom.
Big, smelly mess to clean up. I help get the bed ready. The smell is really bad.
She's gritting intensely. I see that she gets Ativan and sit with her until she quits
gritting. Then I start making banana bread in the kitchen and have a long talk with
Vicky. I return to check on Mother and spray the bathroom. Gradually the smell
abates. When the banana bread is done I take slices to the caregivers who tell me
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interesting stories about their experiences in The Neighborhood. I get in bed, read
Suki Miller's book on imaginal experiences, and sleep soundly through the 12:30
changing.
Friday, October 19, 2001.1 wake up at 6:30 and Mother is grinding her teeth
and scowling. Carmen and Sarah come to change her and take her to breakfast. I meet
with the Hospice nurse who reiterates her belief that Mother's needs would be better
met if I moved her to a bed and board. I discuss my concerns with Ted, who disagrees
with the nurse and points out that Mother is well known and well-liked at The
Vineyards. I feed Mother lunch, set her up in a recliner, and have lunch in her room. I
try writing in my journal to see if this process will yield an answer to my dilemma. As
I'm writing, Carmen brings Mother in for a nap. She's gritting intensely. We change
her and settle her in bed. I put music on and sit on her bed next to her. She glares at
me and continues gritting. I feel angry. What's wrong, what would satisfy you? Do
you feel at my mercy? I choose music, activities. I'm in control of you? Does this stir
memories of the way your sister treated you? Ted and Janelle come in to pray with
me, asking God to guide me in my decision about what facility is best for Mother.
Saturday, October 20, 2001 to Saturday, October 27, 2001. During the next
week I followed the same routine of assessing Mother's needs, refining the care plan
and coordinating with the staff of The Vineyards and the Hospice team. I posted signs
on her closet door with her daily routine, schedule for meds, a caution notice that
Mother should not be left unattended at the dining table because she rocks back in the
wheelchair. I was touched by the conscientious attitude of many of the caregivers.
They noted when Mother was changed, noted a skin tear on her arm, and they made
suggestions like putting pillows between her mattress and bed frame to raise the edge
of the bed so that she wouldn't roll off the bed. I also posted a DNR (do not
resuscitate) form. I felt a heavy weight in my chest as I signed the form. I was
requesting that my mother not be revived if her heart or breathing stop.
My dilemma about whether to move Mother to a bed and board, or leave her
at The Vineyards was solved by learning that if Mother moved to the bed and board, I
could visit her, but not help with her care or spend the night with her. I had been very
grateful during the past 2 weeks that The Vineyards allowed me to stay with Mother
and help care for her. I felt that I had played an important role in the team effort of
assessing her needs. On the last day of my stay, I helped the Hospice nurse give
Mother a bath. She was very warm and responsive to me. I felt a connection between
us, and this feeling was validated by the nurse. She commented that Mother seemed
to recognize me and to give me loving looks as I bathed her. This validation
reinforced my determination to be involved with Mother's care and to find ways to
maintain a relationship with her.
Sunday, October 28, 2001. On the first night at home after my 2-week stay
with Mother, during which I became increasingly uncomfortable with an intense
burning sensation under my sternum and tightness in my chest and esophagus, I had
the following dream:

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There was a bus, shaped like a school bus, parked at the top of a steep
driveway. The top of the driveway descended to a level turn-around, and then
descended to a street below. It was my job to back the bus down to the street.
The bus was old, beaten-up, and gunmetal gray. In the place of a windshield, a
hole had been punctured—the metal around the hole bent away from the
inside. I climbed into the driver's seat and as I slammed the door shut, the bus
began to move backward down the steep driveway. I panicked and frantically
searched with my foot for the brake. As I sat in the driver's seat, I felt
physically like a small child. My feet didn't quite reach the pedals and I
wasn't tall enough to see out through the hole in front of the bus. It was dark
and oppressive in the bus. As I began stretching to reach the brake, I realized
that I was pinned against the seat by the steering wheel—it was pressing
against my sternum.
I felt panic and claustrophobia—I was almost immobilized. I tried to
move the steering wheel but it was locked in place. I tried to open the door so
that I could jump out but it was so dark and I was so immobilized that first I
couldn't find the door handle, and when I found it by feeling around for it, I
couldn't get into a position so that I could pull on the handle. I felt an extreme
moment of panic. I was in danger, immobilized, and I couldn't carry out my
task. Then I was greatly relieved to realize that the bus was moving slowly—
not much momentum. It rolled into the level turn-around and stopped. I was
able to maneuver my body to a position where I could reach the door handle
on the passenger's side of the bus, open the door, and get out.
Final Months at The Vineyards
After the 2-week immersion, I felt grateful not only to the staff at The
Vineyards, but also to the Hospice team, particularly the social worker. She supported
my concerns about Mother's custodial and medical needs and also my concerns about
Mother's psychological and spiritual needs. Even though I was satisfied that my
mother was well cared for, it was hard for me to leave her and return to other
commitments. I wanted to be closely involved in her care.
I spent the weekend with her on her 83rd birthday on November 1. During this
weekend the terrorist alert had been raised and there was great anxiety about the
threats that had caused the Homeland Security Office to raise the level of the alert.
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After my mother's birthday celebration, I wheeled her into the activity room in the
assisted living wing where there was a wide-screen TV. As we entered the room, the
San Francisco police chief was explaining that the Golden Gate Bridge was a
potential target and the number of National Guard officers on duty at the entrance to
the bridge would be increased. This news made me very anxious. Two of my sons
used this bridge daily. I turned and noticed that Mother was unusually attentive to the
TV. I asked her if she knew about the terrorist attack and she nodded yes.
During this weekend I obtained permission for my family and I to make
Thanksgiving dinner in The Neighborhood. This was in keeping with my goal of
developing a sense of community among staff, family members, and residents
through seasonal celebrations. I arrived on the Wednesday before Thanksgiving with
cooking and baking utensils and ingredients. I involved two of the higher-functioning
residents in making corn muffins, cranberry sauce, and my mother's coffee cake. The
caregivers were supportive and enthusiastic about baking with the residents. We
exchanged memories about Thanksgivings past and included the residents in our
conversation. My mother was very attentive and smiled as I told about what a good
cook she was and smiled and nodded when I gave her a piece of coffee cake.
On Thanksgiving morning I put the turkey in the oven before breakfast and
soon we enjoyed the aroma of a roasting turkey. My husband and son sat and talked
with the residents while I made a fruit salad with one caregiver and two residents who
ate the fruit almost as fast as we cut it. One of the residents, an accomplished pianist,
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played a hymn and the executive director, several caregivers, the activities director,
my husband, my son, and I sang the words to the hymn. A few of the residents joined
in for parts of the hymn. Then my husband said grace and we enjoyed a family-style
meal.
Mother had been very alert throughout the morning, sometimes smiling,
sometimes watching. When we sat down to eat, I began feeding her and her
expression shifted slowly from smiling to scowling. I have a photograph of me
feeding Mother at the beginning of the meal and she's smiling, and another one of my
son feeding her dessert and she's scowling. Her scowling expression made me
wonder of she felt humiliated that her grandson was feeding her.
After Thanksgiving I moved from assessing Mother's needs to addressing the
Hospice nurse's concerns that Mother needed more custodial care than The Vineyards
could provide. I felt a growing desire to find a place for Mother close to my home so
that I could be more closely involved with her. The fact that she was no longer
walking made caring for her less challenging but more labor intensive. To keep her
skin from tearing and to prevent bedsores, she needed to be changed and repositioned
every 2 hours throughout the day and night, and she required someone to feed her
three times a day—which could take up to 1 hour for each meal.
I visited a small, assisted living facility a few blocks from my home to see if it
was a suitable place for Mother, and to see if the facility would accept Mother. I had
considered this facility right after I moved Mother to California, but the management
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would not allow dogs. As I toured this facility, which I'll call The Hacienda, I felt
excited and hopeful. It had the look and feel of a small, European hotel. The lobby
and halls were decorated with antiques and the rooms were spacious and opened onto
a patio. There was an activities room and a dining room with a piano which was used
once or twice a week before or during meals. There was a patio in the back of the
facility with a lovely garden overlooking a creek. I assessed this facility with an eye
to how Mother would experience it and how I could use it for enhancing her daily
life. The patio would provide a place to sit in the sun and listen to the creek.
The director explained that The Hacienda was an assisted living facility with a
license which allowed the services of Hospice, but her staff did not provide nursing
care. I assured the director that my mother's daily care did not require medical
expertise, and that she did not exhibit aggressive behavior. To my great relief, the
director agreed to accept my mother as a resident of The Hacienda.
I felt great excitement that Mother would be so close to me. During the weeks
after her seizure I had considered caring for her in my home but, again decided
against this because of the difficulties of finding enough good caregivers to assist me,
and of running a home that met the needs of both my husband and my Mother. I
decided that having Mother in a place with full-time staff focused on her needs where
I could go and be uninterrupted in my time with her was more reliable than my trying
to set up in-home care. Being mindful of my limitations as a caregiver, I believe,

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played a crucial role in providing good care and maintaining a loving relationship
with her.
As I began making preparations to move Mother I spent the second week of
December living with her in her room at The Vineyards. The staff there had been a
major source of support and had become like an extended family. I needed time not
only to pack Mother's things but to express my gratitude and say goodbye. I gave
notice to both The Vineyards and to Hospice of Napa that Mother would be leaving in
January, wrote notes and gave some of Mother's hand-made Christmas ornaments to
the people who had given her such good care. I put a small Christmas tree in her room
and played Christmas music, instinctively feeling that even though she seemed
oblivious to her surroundings, it was important to create a positive atmosphere in her
room. This instinct would be validated in the coming months by professional
caregiver Ann Cason, whose book Circles of Care was discussed in the Literature
Review.
I also decorated Mother's room with angels that I had purchased in various
shops. I put some angels on her tree and two lovely reproductions of Fra Angelico's
angels on the walls. One, a picture of the Annunciation, I put on the wall opposite
Mother's bed, thinking maybe she might wake up and have a lucid moment when she
recognized Mary and the angel. I hung the other reproduction (an angel with a
contemplative look, holding a musical instrument) over the head of Mother's bed; I
hoped she might experience the music and the atmosphere in the room and feel as if
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there were loving presences tending her. I later realized that the angel I chose to place
over Mother's bed was the angel that symbolized the canonical hour of Compline—
completion—in Music of Silence.
Mother had lived in The Neighborhood for 2 years and was very well-liked.
As I watched her decline, I noticed that much of her anger and bitterness disappeared,
leaving a refined, gentle demeanor except when she was agitated. During this week in
December many of the caregivers spent time with me sharing stories about Mother.
One caregiver related that she had come to work one morning after being up all night
looking for her son who had run away. She went to my mother's room and, as she
began to help Mother dress, the caregiver burst into tears. She said that Mother
brushed the tears away and then patted her shoulder. I was touched by these stories
and the notes I received. I was especially touched to discover that Donna had repaired
a broken stool of Mother's. I felt glad that, in her last years, Mother's relationships
were caring with very little contention.
I spent the afternoon Christmas Day with Mother and then returned on
January 9, 2002, to move her to The Hacienda. My husband, son, and I arrived to
pack her belongings, most of which would be going to Goodwill. My husband and
son drove off with Mother's furniture loaded in a pickup truck, and I wheeled Mother
through the lobby for the last time. Many staff members came to hug her and say
goodbye. One caregiver who had not worked for The Vineyards for the past month,
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came bustling through the door and said she had just seen Marge's furniture moving
along the highway and wondered where Marge was.
The caregivers helped lift Mother into my car and off we went. Mother had a
calm and watchful expression during the goodbyes. I felt a wrench as we drove away
from The Vineyards. As we rode along, I experienced a timeless moment during
which Mother and I were in a world of our own. I felt a closeness to her, and she
continued to be calm and watchful. I felt a desire to freeze this time that I had with
her.
Life in The Hacienda
Moving into The Hacienda was hectic. The director was not there, the woman
in charge was aloof, and the chef was extremely brusque when I asked if he could
puree the meat and vegetables for Mother. I began to worry that I had made a mistake
when Angelina arrived to help us. She was another of those caring people who made
our journey easier because of her conscientious, generous caregiving. She settled
Mother and me at a table in the dining room while my husband and son set up
Mother's bed and dresser. There were 15 other residents, seven of whom were
coherent and responded warmly to Mother and me. All of the residents were very
frail. Eight of them, including my mother, died during the next 12 months.
Mother was having difficulty sitting in a chair, so I propped her up in her
wheelchair with pillows and moved a recliner chair from my home into the activities
room where she would spend most of her waking hours in the coming months. After
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dinner Angelina and I got Mother settled in the recliner and I unpacked her things. I
was very lucky that the census was low and the director did not assign anyone else to
Mother's semiprivate room. This meant she would not be bothered by a roommate's
loud TV, and it allowed me to play music for Mother and spend the night with her. I
played a Mills Brothers CD while I put Mother's clothes away and felt intense
sadness as I pictured my parents dancing to this music. I realized that her belongings
were reduced to very few, and that I would not be setting up another room for her. I
put the pictures of the ancestors (grandparents, aunts, and uncles), my father, sister,
and my children over her bed, again with the intent that they be a presence in her
room. I hoped Mother would have moments of coherence and recognize them and
feel nurtured by their presence. I felt their presence often in the months which
followed as I sat at Mother's bedside. I also hung the Fra Angelico reproductions near
her bed.
Sorting through Mother's things, I discovered some letters tucked in a book.
Two of them were compelling. In one letter to me, dated October, 1990, she describes
her fear that my father's cancer had recurred, and she speaks of being confused about
prayer: "I'm confused about this praying business. The Bible tells us to pray 'Thy
Will not mine be done.' I want him here—maybe the Lord has other plans?"
The second letter, also written to me, describes an experience she had during
her weekly shift as a Pink Lady at the local hospital. She tells of helping to transport a
frail, elderly woman to a room where she would spend the night and then be
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discharged to a nursing home. Mother explains that as she helped position the
woman, she noticed that her feet were cold, and so found some socks to put on her
feet. Mother commented that the woman had Alzheimer's disease and probably did
not notice that her feet were cold. Mother concluded that "the poor soul doesn't seem
to have any people to care for her."
I spent three nights with Mother helping the staff get to know her and her
needs. As I became familiar with the caregivers and the routine I felt increasingly
relieved and grateful that I had moved Mother. Most of the residents were not
ambulatory, and the pace was slower and much less hectic than at the Vineyards.
There was no change in staff during my mother's residence at The Hacienda,
and several of the caregivers had worked for there for 10 years or more. The routine
went very smoothly except during occasional medical crises like a stroke or a death.
There were two difficult residents during my mother's stay at The Hacienda. When
she first moved in, there was a man with dementia who wandered through the hall and
in and out of rooms. He was put on medication and his family was required to have
someone with him at all times. He died in May, and another man moved into his
room. The new resident was in a wheelchair and wheeled himself up and down the
hall moaning, "Please, someone please help me. Please, God, help me. I want to kill
myself. Please, someone help me." He had a sister who would come periodically and
speak sternly to him. He was put on medication which made him comatose.
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My mother showed signs of disturbance after the move. She was agitated,
gritted her teeth often, and had chronic diarrhea. One day when I was feeding her
lunch I noticed the smell of diarrhea and called for help to get her out of her chair,
into her wheelchair and into the bathroom. Once in the bathroom she continued to
have waves of diarrhea for about 10 minutes. She looked confused and
uncomfortable. The smell made me nauseous. The mess was beyond my control. I
could not stop the process, but I could be with her in it. I sat with her and held her
hand. When the waves stopped, Angelina and I cleaned Mother and put clean clothes
on her, and tucked her in bed. I sat with her for the rest of the afternoon and offered
her sips of water. She finally fell into a deep sleep.
One liability of spending a lot of time in a care facility is that you are exposed
to the respiratory and intestinal infections that spread easily in these institutions. Not
long after my mother moved to The Hacienda I had an intense bout with stomach flu.
As I was recovering, I got a call from The Hacienda to come and get my mother's
clothes and bedclothes and launder them. The staff was overwhelmed by the laundry
of a number of residents who also had the stomach flu. As I put loads of wet
bedclothes into the washing machine, the stench stirred nausea in me. It seemed that
in this moment I had shifted from supporter to participant in my mother's underworld
experience.
Gradually Mother settled into the routine of The Hacienda and began to
respond warmly to the caregivers. All of the caregivers spoke Spanish and very little
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English, which might have been a problem when Mother was more coherent, but
most of the time now she seemed oblivious to what was being said. I was very
impressed by the gentle, conscientious manner of the caregivers and by the unusual
competence and devotion Angelina showed in caring for my mother.
Angelina noticed that Mother looked uncomfortable sitting at the table during
meals, so we began feeding her in the reclining chair in the TV room. I bought a CD
player for the TV room so that we could have music during meals. As I fed Mother,
she would mark the rhythm by tapping her feet. Angelina occasionally would bring
me a cup of tea and talk with me. She spoke English well enough that we were able to
exchange stories about our families. She was very interested in stories about Mother,
and told me she thought I should let Mother's hair grow because it was so pretty.
I spent many hours in the TV room feeding Mother and watching the life of
The Hacienda go on around us. One woman, Rosa, would come into the TV room
after meals, and we would have the same conversation every time. She would ask
where I was from. I would tell her Michigan. Then she would tell me that she was
from Minnesota, but her parents had come from Finland.
One day when I was feeding Mother, a little boy whose grandfather was a
resident sat near Mother watching TV. He turned to watch me feed Mother and asked,
"Why doesn't she talk?" Mother smiled at him. A few minutes after this, the little
boy's mother came into the TV room and began to talk with me. All of a sudden,
Mother went into violent convulsions, her eyes rolled back and she was foaming at
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the mouth. The woman I'd been talking with helped me move Mother to the floor and
I yelled to the caregivers to call 911.1 had forgotten that when a person is enrolled in
Hospice, you don't call 911. The emergency team came and they were very gentle
and competent in examining Mother and calming her and me. They decided to take
her to the hospital for a C.A.T. scan to see if she had had a stroke. As in past crises, I
slipped into the traditional mode of responding to medical crises and forgot that it did
not really matter whether Mother had had a stroke. She was dying, and it did not
matter whether she died from a stroke or Alzheimer's disease. I accompanied her to
the hospital and discovered that she had not had a stroke; it was another grand mal
seizure. I had never seen anyone go through a grand mal seizure and was quite shaken
by it, as was Mother. She was agitated at the hospital, but was talking a little. It was
almost as if the shock in the electrical circuits of her brain caused some connections
to work. When we returned to The Hacienda, Mother fell into a deep sleep.
I had begun to develop a relationship with a new team of Hospice caregivers,
a very competent and supportive nurse and social worker. I talked with them about
my research into the psychological and spiritual needs of those with Alzheimer's
disease; they were very interested in my work and shared stories of their experiences
with Alzheimer's disease patients. Two experiences with the Hospice nurse stand out
in my mind. One was her sensitive, caring way of interviewing me during our first
meeting. She asked questions about Mother and it felt good to be able to talk about
Mother to someone who was interested in her. Since the move to The Hacienda, most
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of my time with Mother was spent in silence. The fact that the caregivers in The
Hacienda did not speak English meant that I was not having casual conversations
with them. I missed having a family who knew Mother—a sibling, cousin, aunt,
uncle—who could sit with me at Mother's bedside.
The second experience with the Hospice nurse occurred shortly after I had
moved Mother to The Hacienda. I received a message from the nurse that she had
stopped to see Mother and she had been gritting her teeth so the nurse had ordered a
prescription for Risperdal because many studies showed how effective Risperdal is
with Alzheimer's disease patients. I was alarmed to hear that Risperdal had been
prescribed for my mother. This was the drug that had been given to Margo, when she
first moved to The Neighborhood, and had caused her to shake so badly she could not
hold a cup of coffee. Even after the Risperdal was discontinued, Margo retained a
slight tremor in her right hand. I had resisted suggestions that my mother be given
antidepressants because she had tried several brands after my father died and hated
the way she felt when taking them. My mother was very sensitive to medications and
usually took half of the recommended dose of most medications.
I called the director of The Hacienda and told her of my concerns about giving
Mother Risperdal. The director understood my concerns but said she had to give
Mother the Risperdal unless the nurse changed the order. I called the nurse and
waited very anxiously for her to return my call. Fortunately she called before the
medication was given to Mother. The nurse was sensitive to my concerns about
Risperdal and we agreed that I would observe Mother closely during the next few
days to see if there were a pattern to her teeth gritting. We decided that changing
Mother's position more often seemed to reduce the teeth gritting. I felt grateful to the
nurse for working with me and understanding my goal of keeping mother
comfortable, but not overmedicated.
To bring some variety to my visits with Mother, I began to find things that I
could do with her. I took her for walks to a local outdoor cafe where we sat in the sun
and Mother would look up at the sun and close her eyes as if drinking in the warmth,
and to a local park where once a big golden retriever bounded over and dropped a
dirty tennis ball in her lap. She had smiled in response to this. I asked if she
remembered Joey and she nodded her head. I asked her if she would like to see Joey
and she shook her head "yes." I am not sure why, but I never took Joey to see her. It
would have been very easy. I feel a wrench when I think that it might have brought
her pleasure. The only reason I can think of now for not doing so was that he had
finally calmed down (no more skin problems) and seemed very happy in his new
home. Whenever he saw me he wagged his tail but did not pull on his leash to try to
run to me.
Another outing that required outside resources was transporting Mother to my
home for a few hours. Although I only lived a few blocks from The Hacienda, it was
uphill part way and my home has a steep driveway, so I would not have been able to
get Mother out of the car and into my home by myself. A friend suggested I get help
from Whistlestop Wheels, a service that provides transportation for elders. I signed
Mother up and the bus would come to The Hacienda, I would wheel Mother to the
bus and follow the bus to my house, where the bus driver would wheel Mother to the
front door. I enjoyed these visits and I think Mother did, too. I would sometimes
wheel her onto the deck and we would sit in the sun, or on cold days I built a fire and
we sat near the fire and listened to music. She would tap her foot to the music and
shift from watchful, to glazed, to dozing. Once as I fed her homemade a soup she
liked, she smiled and murmured "m-m-m." This reaction contrasted with an occasion
two weeks earlier when I had been feeding her soup at The Hacienda. She turned her
mouth away after I gave her a spoonful and when I tried again she said angrily "No!"
I was shocked to hear her speak. I tried applesauce and she ate all of that. I decided
she did not like the taste of the soup.
My Mother's Day gift to her was to hire an accordion player to come to The
Hacienda. The director was pleased by my offer and arranged an afternoon party to
which she invited the families of the residents. The party went very well. The
residents, caregivers, and at least seven family members gathered in the dining room
for refreshments and music. The mood was festive, and I sat close to Mother. She
smiled warmly and, at one point, leaned toward me and pressed her lips on my cheek.
I savored this moment of closeness.
Mother's routine was very regular. A team of 2 caregivers (3 if there were a
big mess) would reposition her every 2 hours during the night and change her if she
needed to be changed, and at 6:30 a.m. they would get her out of bed, dress her, and
wheel her into the TV room. Angelina was usually the one who dressed Mother, and
she would comment on the outfits she thought looked good on Mother. Angelina
would feed her breakfast and Mother would stay in the TV room until lunch at 11:30.
There were often activities in the TV room during which Mother moved through her
pattern of watchful, glazed, dozing. After lunch Mother would be tucked in for a nap,
then brought back to the TV room for dinner at 4:30, and at 6:30 she was undressed
and tucked in bed. She seemed comfortable most of the time during the day, but she
was restless in the evening and would often grit her teeth during the night. I asked the
caregivers to put soft music on her CD player after they tucked her in, hoping the
music would calm her.
I often stopped in to feed her lunch or dinner and to sit with her between 7 and
9.1 spent many hours sitting by her bedside worrying when she was gritting her teeth
and wondering what was going on inside her mind. I did not believe the neurologist
who had told me that nothing goes on in the minds of those in late-stage Alzheimer's
disease. As I watched Mother, I saw varied facial expressions and gestures that
suggested there was something going on in her mind, if mind is defined as more than
a cognitive function of the brain. As I related in the Introduction, one night when I
asked Mother if she felt frightened, and if she wanted me to leave, she responded
intensely, "Yes I do!" I felt amused, rejected, and relieved at this response. I
remembered times when Mother was exasperated with my intense questioning and I
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felt that on some level she was engaged in a meaningful process and she wanted me
to get out of her face so she could continue her process.
As in the preceding stages of this disease, a significant, new symptom would
signal a new level of deterioration. At the end of June I noticed that Mother was
occasionally holding food in her mouth and would swallow if I put a spoon to her lips
to cue her, or if I said, "Are you going to swallow, Mother?" I reported this new
development to the Hospice nurse who told me that this was a classic behavior in the
progression of Alzheimer's disease. She described the behavior as pocketing food and
explained that this behavior would lead to inability to swallow which would be the
beginning of the active process of dying.
I began to scale back my activities and plans for the summer, realizing that
Mother's death would occur in weeks. My husband and one of my sons spent the July
4 weekend in Northport, which allowed me to clear my schedule for the weekend
and spend it with Mother. It was a very difficult weekend. Mother was irritable much
of the time. I took her for a walk to the nearby cafe and she scowled and gritted her
teeth continually. She was awake for much of the night and dozed on and off through
the day. I reported these behaviors to the Hospice nurse and she increased the dosage
of Ativan which caused Mother to sleep more during the evening, but she was still
gritting her teeth when awake.
At this point I began to explore the resources I had gathered on the subjective
experience of dying. I read about the Tibetan, Buddhist, and Christian theories of the
inner experience of dying, and I also read about the shaman's experience of traveling
in nonordinary reality. I wondered if Mother were experiencing another reality.
Some of these resources described rituals of ministering to the dying. These
rituals were inspiring to me. I wanted my mother to feel love and support and I did
not know exactly how to provide this. The books I read were helpful, but none spoke
directly to my situation with my mother, and so I sought additional resources. I
attended a one-day workshop on intuitive painting as a means of getting in touch with
a deeper level of my experience, I had a consultation with a physical therapist who
used shamanic journeying in her work, and I attended a 4-day conference focused on
shamanic journeying as an alternative healing technique. These experiences provided
an underworld counterpoise to the dayworld experiences of caring for Mother. I will
discuss the significance of these underworld experiences in the Reflection which
follows this narrative.
The painting and shamanic journeying enabled me to access my own
underworld, but did not address my concern about my mother's inner experiences.
Thus I consulted several professionals with experience in ministering to the inner as
well as outer needs of people who are dying. One of the professionals I contacted was
a gifted, sensitive young woman who had been trained at The Chalice of Repose, the
school for music thanatology discussed previously in the Literature Review. When I
called this young woman, I will name her Katy, I explained my concerns about my
mother's agitation, and she agreed to come and play her harp for Mother.
Katy arrived at 7:00 on the evening of July 5 and set her harp up at the side
of Mother's bed. I sat at the foot of the bed and Katy began to play the harp and sing
softly. Mother was dozing lightly when Katy began to play. I watched Mother,
wondering if the music would have any impact on her. During the first 15 minutes
that Katy played and sang, Mother slipped slowly into a deeper sleep. I was pleased
that the music seemed to be calming to her. Then Katy shifted into a different chord,
and Mother began to grow restless and woke up. She moved into increasingly agitated
behavior—she drew herself into the fetal position, grimaced, moaned, and then her
legs and arms began thrashing about. I was astounded by her progression from deep
sleep to this agitated behavior with no outer stimulus other than the music. I moved
my chair to the side of her bed so that I could hold her hand and speak soothingly to
her. She began to calm down as I talked to her.
Katy finished playing and left, and I sat behind Mother on her bed and held
her as her breathing slowly grew calmer. Holding Mother reminded me of holding a
frantic child who slowly relaxes in your arms. Mother finally grew very quiet, eyes
wide open and alert. I held her for about 30 minutes and could hear strains of music
from the banjo player who performed every week at The Hacienda. The music made
me think of my father, who loved banjo music.
When I spoke with Katy on the telephone after this experience, she said she
understands the dying process as a time of doing inner work, and she said she shifted
to a chord which often moves people to a deeper level of inner experience. Katy
speculated that there was something disturbing to Mother when she moved to a
deeper level, possibly something she is struggling with as she moves toward death.
Mother fell asleep without gritting her teeth and slept most of the night after
Katy had played for her. I asked Katy to come back again, hoping that the music was
meaningful and might reduce Mother's agitation. The next week, on July 12, Katy
came again and we talked outside Mother's room before she began to play. Katy told
me she had been thinking about Mother's agitated behavior when she played last
week and wondered what sleep means to someone in the final stage of Alzheimer's
disease. She commented that when we sleep we go into the unconscious, and since
people who are in the late-stage of Alzheimer's disease are in the unconscious most
of the time, maybe they do not need sleep.
As Katy began to play her harp and sing, I looked at the open doorway of
Mother's room and there was the irascible woman who lived across the hall, sitting in
her wheelchair in her doorway with a soft expression on her face. I then noticed the
tip of a wheelchair showing at the left side of Mother's doorway and realized it was
the woman who lived in the room next to Mother. Both of these women told me later
they hoped I was not upset that they listened to the music, and told me they thought is
was wonderful that someone was playing music for my mother. I had the impression
that they not only enjoyed the music, but also appreciated the fact that Mother was
being tended.
This second time that Katy played, Mother behaved quite differently. For the
past 8 months she had been raising her legs in the air like babies do when she was
sitting or was lying down. She was not agitated but seemed to be quiet or active,
depending on the volume and pace of the music. After she finished playing, Katy and
I talked outside Mother's room. Katy noted that Mother's breathing had been erratic
but then stabilized as she played unusual intervals that matched Mother's movements.
Katy again speculated that Mother's nervous system was shutting down and that her
movement was possibly an expression of change she felt in her body. We both saw a
similarity between Mother's movements and the movement of babies and Katy
commented that babies move as a way of incarnating, coming into their bodies, and
Mother's movements are a process of excarnating. Katy was going to be away for a 1-
month vacation, so we agreed that she would come again when she returned from
vacation.
Another professional I consulted in a search for ways of ministering to
Mother's inner needs was Ann Cason, author of Circles of Care (2001). I had come
across an advertisement stating that Ann was establishing a practice in the county
where I live. When I contacted Ann and explained my mother's situation, she and her
associate were kind enough to come to my home and talk with me and then
accompany me on a visit to my mother. I was moved to tears as I watched her gentle,
caring way with Mother. She also listened sensitively as I discussed my growing
sense of isolation. I received a letter in response to this visit from Ann Cason in
which she suggested that I invite a sensitive friend to have tea with me at Mother's
bedside (attached as Appendix C: Letter from Ann Cason dated July 9, 2002). I
thought of a friend who is a nurse, who has been a friend since our children were
babies, and who was making frequent trips to tend her elderly mother. She is one of
the generous people whose support eased my journey. We had tea at my mother's
bedside and talked with each other and occasionally with Mother. I will always
remember with gratitude her comfort and sensitivity with my mother.
At this point I was intensely aware of a desire for a community to support
both my mother and me. I had heard and read many accounts of what was considered
& good death, and most of these accounts described the importance of supporting
people who are dying so that they know they have been a valued, loved part of a
family or community. I had been taught in a Zen Hospice workshop that what matters
most to people who are dying is to know they have loved well, and been well loved. I
learned that the subjects of the Missoula Project on Death and Dying expressed a
desire or need to feel a part of something larger, whether that something is
community, family, or a spiritual sense of being part of a larger whole.
I had two dreams that spoke to this lack of a family circle. In one dream I was
in my mother's home trying to fix Thanksgiving dinner and was having trouble
"getting it together." Some of my relatives had come even though they had already
had dinner because they were trying to be nice and celebrate with my mother and me.
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I felt this dream was my unconscious processing the loneliness I felt in tending
Mother.
I described my dream and concerns to Katy one evening after she had played
for Mother. I was telling Katy that her presence and interest in Mother felt good to
me. Katy then related a dream she had had about Mother. In Katy's dream my mother
had been suffering from an ectopic pregnancy. Katy's interpretation of the dream was
based on her belief that birth and death are similar processes and, like in an ectopic
pregnancy where the life is not anchored in the protective enclosure of a womb and
therefore cannot progress through the normal stages that lead to birth, my mother
might have been feeling that she was not attached to a community in life, and this was
causing distress and was making her dying process more difficult. Katy's insights
resonated with my own inner experience of Mother's dying process. I had been
reading about the tradition of Ars Moriendi and was especially moved by the
monastic ritual of keeping a vigil in ways that tended both the body and mind of the
person who was dying.
Drawing from the tradition of Ars Moriendi, I began to plan a vigil for
Mother. I turned to my husband, sons, and future daughters-in-law for support, and
they responded warmly and generously. I explained my feelings of isolation and my
hope of coming together as a family for a weekend as a variation on keeping a vigil
for Mother. The contemporary culture has a very different structure than the culture
of a medieval monastery, and does not usually allow families and communities as a
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whole to withdraw from other commitments and participate in a vigil throughout a
lengthy dying process, but I hoped we could communicate, during a weekend focused
on her, that she was loved and was a valued part of our family.
My family agreed to my request that we gather for the vigil on the second
weekend of August. This meant that two sons and one future daughter-in-law would
travel from New York for the weekend. I told my family that it would mean more to
me and hopefully mean something to Mother if we gathered before rather than after
she died. I explained that my goal was to hold her in the midst of our family and tend
her as a way of telling her we love her, and as a way of supporting her on her journey
into death. The following excerpt from a letter I sent to my children describes the goal
of the vigil for my mother:
The vigil gives us the time to express our thankfulness for the gifts she has
shared with us, offer her forgiveness for the things she has done to upset
us, and ask forgiveness for the things we have done to upset her.
Part of my research over the past three years, since my mother was
diagnosed with Alzheimer's, has been to look at what is going on in the
minds of Alzheimer's patients. I believe that on a deep soul level she
knows we are her people and is aware of our presence and our love. I
believe that our coming together to care for her during this vigil will touch
her soul, give her comfort and ease her passage.
Below I have listed a proposed schedule of how our 24 hour vigil might
go. I welcome ideas from you. I believe this can be a time for sharing
meals, including communion, family movies, stories, fun and quiet time
while holding Grandma at our center.
My hope was that as a family we could find a way to have fun, to pray, to
participate in a service for Mother, and to hold her in the midst of our activities
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without being either superficial and insensitive to her situation or solemn and maudlin
in the face of her closeness to death.
In preparation for the vigil for Mother, I read and searched my soul for
images, feelings, and thoughts regarding how to support her, how to express my love
for her, and how to say goodbye. When I focused on how to say goodbye, the
negative images and feelings I had had during the week of July 4th came to the fore. I
will never know what motivated Mother's scowls, teeth-gritting, and angry response
when I asked her if she wanted me to leave, and her writhing, agitated behavior
during the first session with Katy. I know it stirred many negative feelings of being
rejected by Mother and of not meeting her expectations of me. I yearned for a way of
reconciling with her.
On this subject I sought the counsel of an Episcopal priest who is a friend. He
helped me plan a reconciliation service with Mother and a service that would be the
center of our family vigil. For the first part of the reconciliation service I went to
Father Bob's office and he read the Service of Reconciliation from the Episcopal
Book of Common Prayer. When he came to the place in the service where the penitent
offers the cares that are lying heavily in her heart, Bob paused, and I poured out a
description of the ways my mother had hurt me throughout my life, and ways I
thought I had hurt her. When I finished, Bob concluded the service.
The second part of the reconciliation service took place in my home. I had
brought Mother to my home on a warm afternoon two days before the vigil. Bob
came and, again, read the reconciliation service. I had introduced Bob to Mother, and
explained to her that he would help us to resolve the pain we have caused each other
and help us forgive each other. When Bob came to the place in the service where the
penitent speaks, I talked with Mother about hurtful things she did to me and hurtful
things I did to her. I was less emotional than I had been when I responded to this part
of the service in Bob's office. My goal was to be brief and honest yet not emotional. I
had simmered in my mind thoughts of how I would speak about this subject to
Mother in a way that would be meaningful but not inciting.
As I spoke to Mother, she was alert and watchful—she did not grit, scowl,
smile or doze. When Bob read the conclusion of the service I felt moved. Tears came
and a mixture of feelings—sadness, release, and love. I hoped I would be able to
remember my words (I had not written them) and feelings I felt during the service. I
can recall the feelings, but not the words.
The release I felt at the end of Reconciliation Service allowed my energy to
flow undeterred into arrangements for the vigil. I arranged with The Hacienda for
Mother to spend the weekend in my home. Whistlestop Wheels delivered her on
Saturday morning at 9:00 and the last of my children arrived at 10:30. There was a
warmth and generosity of spirit from the first greeting to the final goodbye.
My sons and future daughters-in-law each held Mother's hand and greeted her
while my husband and I set out a buffet brunch. We ate in the living room where
Mother sat in a swivel chair and turned herself around slowly as we ate. There was
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humor and casual conversation, and after brunch we put Mother in her wheelchair and
headed off for a walk to a redwood grove 15 minutes from our house. It was sunny
and warm and Mother was alert and smiling. My sons took turns pushing her
wheelchair and we all monitored her feet and would call out when her feet slipped off
the wheelchair pedals. One of my sons voiced suspicion that Mother was deliberately
sliding her feet off the pedals. There were stories about times past, memories of
birthday parties and adventures that had taken place in the grove, and a football flying
back and forth that I hoped would not land on Mother. My daughters-in-law were
good sports about listening to all of our family stories and shared some of their family
stories. We arrived at the grove in good spirits but then the weather shifted—the fog
began to come in with a cooling breeze. Mother's mood also shifted from smiling and
relaxed to scowling, shivering, and gritting. We returned to our house as quickly as
we could. By the time we reached our house, Mother was sagging in the wheelchair
and looking very uncomfortable. My husband helped me get her into bed, where I
changed her and settled her for her nap.
The schedule called for us to gather again at 4:00 for a communion service
with Father Bob. At 3:00 I began to bathe Mother in preparation for the service and
dinner. It took a long time to bathe her because I had to continually reposition her, but
I felt a growing intimacy between us as I explained what I was doing while bathing
her. She seemed rested and relaxed after her nap and watchful as I struggled to
reposition her and bathe her. I felt that, even though my efforts were awkward,
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Mother could sense that I was trying to care for her. She did not grit or scowl and
cooperated when I moved her. I put a fresh dress on her and my husband helped me
get her into her wheelchair. We wheeled her into the living room and put her in the
swivel chair. Bob had arrived and my children had gathered. We sat in a circle around
Mother. I sat next to Mother and explained what we were doing. Bob began the
service (a description of the service is attached as Appendix D: Communion under
Special Circumstances) and I moved between the role of explaining the service to
Mother and participating in the service. Mother was very alert and watchful during
the service. At the end of the service we each placed a hand on her, Bob read the
ritual of "the laying on of hands and anointing," and I quietly explained to Mother
that we loved her and were there to care for her. The conclusion of the service was
"Amazing Grace." My husband and one of my sons played the chords on guitars and
my family began to sing. I explained to Mother that we were singing this song for her
and I had planned to join in the singing, but Mother looked at me with a flushed face
and expression that seemed intensely loving. I was transported by the look on her face
and the feeling between us. I held her hand and could not take my eyes away from
hers. It was a timeless moment during which I felt supported by the singing and
connected to Mother by intense feeling. One of my sons later commented on how
alert and loving Mother's expression was during the song.
After "Amazing Grace" I reluctantly left Mother's side and moved into the
role of hostess, serving refreshments. There was a warm but subdued feeling among
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us as we prepared for dinner, and the weather shifted from sultry to cool as the fog
moved in. Mother began to doze as we ate dinner, and at the end of dinner she was
wrapped in blankets and sleeping soundly.
After dinner I got Mother ready for bed and tucked her in, and Katy arrived to
play at her bedside. We gathered outside her room as Katy played. Mother slept
soundly during Katy's music. We all said goodnight, and I settled down for the night
on a futon on the floor near Mother's bed. I got up twice to reposition her but then fell
sound asleep and awoke at 5:00 a.m. feeling cold, and realized that Mother had
kicked off her covers and was wet and shivering. I felt an intense wave of familiar
guilt that I had failed her. I changed her and dressed her and my husband helped
move her to the swivel chair in the living room. We prepared breakfast and ate in the
living room and watched family movies. My sons and daughters-in-law had a very
good time laughing and commenting on these movies, and there was a sense of family
history as we bantered about the movies. Mother was watchful and alert at first, and
then fell into a deep sleep. I suspect she had not slept well through the night and also
was possibly fatigued by so much activity. We concluded the brunch, movies, and
family vigil with a prayer for Mother. I know the vigil meant a great deal to me. I do
not know what it meant to my mother.
During the 3 weeks following the vigil, Mother grew less animated and
pocketed her food throughout each meal. It took over an hour to feed her. On
September 8,1 arranged for her to come to my house. I had made the soup she likes
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and tried to give it to her, thinking she might swallow it because she liked it. I gave
her a spoonful and she choked on it. I held another spoonful to her lips and she turned
away from it, so I fed her Ensure, which was the only sustenance she seemed able to
swallow. I took her out on the deck in the sun and she recoiled and looked
uncomfortable in the sunlight. I took her back into the house and felt a vague
desperation that I could not reach her—that she was slipping away from me. I wanted
very badly to hold her, so I struggled to get her out of her wheelchair and onto the
couch so that I could sit next to her and hold her. I could not get her into a
comfortable position and can still remember the expression on her face after I had
pulled and shifted her into an awkward position, half on my lap. She looked
uncomfortable and confused. I finally got her back in her wheelchair and then was
able to shift her into the swivel chair. I played her favorites CDs and sat opposite her,
savoring this time with her and knowing that our time together would end soon. I
made the following notes as I sat with her:
I love settling my mother in a comfortable chair, putting music on that

I know she likes and sitting opposite her. It's like watching a young baby's
movements and gestures. Right now Julie Andrews is singing "Alexander's
Ragtime Band" and my mother is swiveling her chair and waving her foot,
suspended in the air, in time to the music. Her facial expression ranges from
serious and watchful, to yawing, to a smile and even a slight laugh.
I feel close to her, on a similar wave length. I set a time, at 11:30 I'll
get her lunch. Once I set the time, I'm free to just be with her.
I treasure these moments, however short-lived. Often before I reach
my time limit, she shifts into sleep, grimacing, or teeth-gritting.
I try to intuit her needs. Has she slipped into a slouch that hurts her back? I
resituate her, notice her arms are cold, and tuck a blanket around her. It's such
a pleasure when she smiles with contentment in response. Now, I'm playing
Grieg's "Peer Gynt." She's staring soulfully, moving her feet slowly. I watch
her try to raise her hand, not quite getting it to her nose. I imagine the feeling
of an itchy nose. I help her get her hand to her nose. She smiles.
On Thursday, September 12,1 arrived at 4:00 to feed Mother and discovered
that she was agitated and in distress. I tried to feed her, but she closed her mouth and
then opened it and the liquid Ensure dribbled out. She grimaced and recoiled when I
tried to put another spoonful in her mouth and looked very uncomfortable. I thought
maybe the taste of the Ensure was unpleasant to her, so I swabbed her mouth
thoroughly and realized that her mouth had not been cleaned recently, and her
remaining teeth were decayed. I felt very bad and wondered if this had been the cause
of her teeth-gritting. In my efforts to assess her needs, I had neglected mouth care. I
called the Hospice nurse to alert her and she told me she would come to examine
Mother.
The Hospice nurse arrived soon after I called her and examined Mother. She
told me that Mother was no longer able to swallow and had entered the active dying
phase. She explained that we would stop giving her food and water but would swab
her mouth and give her low dosages of morphine to slow her body processes so that
she would not choke on her saliva. We put Mother into bed and administered the first
dose of morphine. I sat with Mother until she was sleeping soundly and then stopped
at the cafe where I usually meet with friends on Thursday afternoons to let them
know what was happening. I then went home, called my family to tell them the news,
and packed clothes, books, sleeping bag and returned to begin the final vigil for
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Mother. I felt very grateful to the director for allowing me to move into Mother's
room and for being very sensitive and supportive.
I sat at Mother's bedside with many feelings simmering inside. I felt relief that
the end was in sight and I would not have to figure out how to finance several more
years of care for her, and relief that I could give myself more fully to other parts of
my life. I also felt worry that Mother might suffer and not die at peace, and I felt an
irrational panic at the thought of losing her. The Hospice nurse had given me a
pamphlet entitled "Preparing Family for the Death of a Loved One." I got ready for
bed and read this pamphlet as well as sections of other books.
The article on the dying process had an impact on my conscious mind and was
of great value because it described the physical as well as mental—psychological and
spiritual—aspects of the dying process. This article spoke directly, simply, and
articulately to my concerns about the relationship between the body and inner life
during the active phase of dying. It explained the physical process of dying as an
"orderly and undramatic series of physical changes which are not medical
emergencies requiring invasive intervention . . . a normal, natural way in which the
body prepares itself to stop, and the most appropriate kinds of response are comfort-
enhancing measures."
The article explained that the other dynamic of the dying process operates on
the emotional-spiritual-mental plane:
The "spirit" of the dying person begins the final process of release from the
body, its immediate environment, and all attachments. This release tends to
follow its own priorities, which may include a resolution of whatever is
unfinished of a practical nature and reception of permission to 'let go' from
those gathered. These 'events' are the normal, natural way in which the spirit
prepares to move from this existence into the next dimension of life. The most
appropriate kinds of responses to the emotional-spiritual-mental changes are
those which support and encourage this release and transition. (Healing
Ministry, May/June, 1996)
The article described typical events in the dying process such as congestion,
breathing pattern changes, and restlessness, and it encourages family members to
respond with calming behavior such as holding a hand, speaking or reading in a
soothing way, playing soothing music, and elevating the head so that secretions pool
low and do not stimulate the gag reflex. The article also stresses the importance of
letting go and giving permission to a loved one:
A family's ability to reassure and release the dying person . . . is the greatest
gift of love they can give at this time. . . . It may be helpful to just lay in bed
with the person, hold a hand and or say everything you need to say. (Healing
Ministry, May/June, 1996)
This article was a very helpful guide for my conscious mind as I moved
through the coming days with Mother. I also read about shamanic travel in Michael
Smith's Jung and Shamanism in Dialogue (1997).This book, I believe, had an impact
on my unconscious because of a dream I had after reading this material. In keeping
with my interest in the metaphoric truth of imaginal accounts of inner life, I was
seeking wisdom from various spiritual traditions in an effort to imagine what my
mother was experiencing and what she would be experiencing after death. I was
feeling anxious and yearned for support. I tried to meditate, but no peace or soothing
images came to me. I fell into a restless sleep and had the following dream:
It was a dark, ominous night. I was in a house or establishment (The
Hacienda) where I was safe, but in front of the house there was a big mucky
area right outside the front door. There were people inside the house and the
lights were on. I was afraid and went out the door and pulled someone out of
the muck. It was Melody, my sister's doll. I could picture Melody in the
dream. I was terrified and went inside to tell someone that Melody had been
sliced through her body. One slice went through her head and lips and another
slice went through her groin. In the dream I thought of the term
dismemberment and its shamanic connotation.
When I woke up, I was crying and remembered that I called out, "Daddy!" in my
dream. I worried that my crying would upset Mother and felt concern that I was not
meeting her needs.
As I moved into what I consider sacred time with Mother, my central focus
was on being with her. The Hacienda staff and my family members were on the
periphery of my attention. As the days came and went, I was aware of the room
growing lighter and then darker and then lighter as a backdrop to being with Mother.
Sunday, September 15, 2002.1 wrote the following journal entries:
This time is precious to me, Mother. I'm in a bubble where the outside world
isn't making any demands. I'm allowed a time to focus on you. I'm so grateful
to be at The Hacienda, where gentle, sensitive care is available at all times and
also there is respect for our privacy here.
Angelina checks in at 6:30 a.m. and Mother is sleeping peacefully. I
tell Angelina that we don't need anything. I enjoy the cool, early morning air
as I listen to Mother's regular breathing, and melt into a sense of oneness with
her. We're both snuggled in our beds. It is quiet, peaceful. I think of the term
Freud used, "oceanic," to describe a feeling the fetus has in the womb. I
wonder what Mother would think of what I just wrote.
After writing in my journal, I slowly got dressed, put the room in
order, and realized with relief and relish that I didn't have to worry about the
tension between outer demands and being with Mother. She was in a phase of
dying that is respected, even in this culture, and I'm granted the right to be in
this room and give myself to the process, to let the process take it's course
without interrupting it. I did not want this time to go too quickly.
I sat at Mother's bedside listening to Brahms's Requiem and
remembered that my middle son was born 27 years ago today. Mother is
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moving steadily out of this world on the date my son entered this world.
Mother's body—withered, gaunt, all bones prominent, teeth yellow and
protruding in her mouth, eyes drooping, and lips dry, cracked, and swollen.
Angelina brought me tea and toast, and at noon, the director brought
me filet and mashed potatoes. I felt wonderfully nurtured. Mother gradually
awakened and began coughing. I gave her morphine and, as she settled into
sleep, I cleaned her mouth. It was full of yellow, viscous, foul-smelling saliva.
I squeezed drops from a sponge into her mouth and put lip balm all around her
lips. I called and canceled clients for next week and called my son to wish him
a happy birthday.
Mother was still peaceful, though her eyes were a little more open. I
checked her diaper and she was soaked. The caregivers changed and
repositioned her. There was a big bruise on her hip. She needed to be
repositioned more often. She became agitated during the changing and I
considered another dose of morphine, but she slipped back into a deep sleep.
The two ladies in the next room were in and out of the bathroom most of the
afternoon. I heard their conversations drifting through the walls:
"Your hair is so pretty, Angelina, do you wash it every day?
"No, two-three times a week."
"Are you mad at me?"
"No, why would I be mad at you?"
"I can't, Angelina, I can't do it."
I felt irritated that they were so noisy, and in the bathroom so much. I
played music to drown out their noise. When the music stopped, I thought of
how it would be to have to be in the bathroom all the time. I listened to the
sounds from the bathroom, hall, and kitchen—toilet flushing (loud toilet),
voices, faucet running, Spanish phrases, dishes clanking, phone ringing,
buzzers going off—all are a backdrop, part of life going on around us.
After lunch my oldest son came to sit with me at Mother's bedside. I
told him stories about Mother and the family. He asked questions about the
family members whose pictures were on the wall over Mother's bed. We
shared ideas about what happens after death. We both like the Tibetan idea of
a Bardo better than Purgatory. We talked about family relationships.
Mother began to wake up. I told my son that I'd been hoping for a
connection with my mother, but I hadn't felt one. He suggested that Mother
said goodbye to me during "Amazing Grace" at the vigil, and he reported a
dream he had last night:
He and his brother were in a doctor's waiting room with my mother.
He saw some of my features in her face, but knew that it was his grandmother.
Her hair was full and she looked like she had before she began to decline. She
told him that it was time for her to die.
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After my son left, the caregivers changed and repositioned Mother. She
became very agitated and looked angry and in pain. I gave her some more morphine. I
wondered if she felt that I was pulling her back into this world—into the discomfort
of her body, and into relationship with me. I dialogued with her:
Kris: I love you Mother
Mother: I know you do, Kris.
Kris: It's hard for me to let you go. Right now I feel like I don't want
this time with you to end.
Mother: Well, I'm ready to go, Kris, you've got to let go.
Kris: Can you give me a couple of days to let go slowly?

Mother: Ok, Kris, as long as I know you're letting go. It's time for me
to go. I've got to get on to the next thing.
I was sitting on the end of her bed with my hand holding her ankle. I loosened my
fingers and rested my hand on her ankles. "See, Mother. I'm letting go. Just give me a
little more time."
With great uneasiness I decided to join my husband, oldest son, his fiancee
and her parents at a nearby restaurant for dinner. Mother was in a deep sleep when I
left and I knew the staff would keep a close eye on her. The dinner was enjoyable,
everyone excited about the engagement and coming marriage and very sensitive to
my concern about my mother. I returned after dinner and put on a Country Western
CD that Mother had liked and sat on the end of her bed. I was flooded with memories
and questions about what Mother was experiencing and what would happen when she
died. On an irrational level, it did not seem possible that she would die. I felt very
reluctant to go to bed. I did not want this time to end, yet I knew I would be
exhausted if I did not get some sleep.
I got ready for bed and watched Mother as she slowly awoke and began
salivating and choking. I gave her a syringe of morphine and waited for her to go
back to sleep, but her breathing became increasingly rapid as if she were
hyperventilating. I had been told by the Hospice nurse that I could give her two
syringes, so I gave her another syringe of morphine, which seemed to have no effect.
I climbed into bed with her and held her, hoping I could calm her, but she continued
to breathe rapidly, as if she were having a panic attack.
I felt panic myself at the fact that I couldn't calm Mother. I wanted her dying
to be peaceful. I called the Hospice advice nurse and she authorized another syringe
of morphine. This made no impact on Mother's breathing. I waited 2 hours and at
2:30 a.m. I called the advice nurse again. She very kindly agreed to come and check
on Mother. When she arrived she explained that sometimes the body reacts to the
shutting down process with a last effort to revive. She gave Mother a shot of Ativan
and waited with me for about 15 minutes. There was no change in Mother's
breathing. The nurse pointed out that Mother's eyes were closed and she was snoring,
which meant she was asleep. The nurse assured me that Mother was not
uncomfortable and encouraged me to get some sleep.
I slept fitfully, waking often and worrying that I would be too tired to be
present with Mother through the next day. When the caregivers knocked at 6:30 and
asked if I wanted them to change Mother, I asked if she were breathing. They said she
was breathing. I remember noting that her breathing was quieter and told the
caregivers to change her.
I regret my next move but I do not blame myself. I was very tired and I went
back to sleep and slept until 8:00.1 awoke and was aware of quiet in the room. I felt
tired and depleted and worried about how I would get through the coming day. I
walked over to Mother's bed and her eyes were open, her mouth was partially open
and her head was turned to the left toward my bed and drooping slightly. I froze as I
looked at her and thought, "She's dead." I felt disbelief as I put my hand over her
heart and felt no movement. I watched her mouth—no sign of breath. I held her
wrist—no pulse. I sat for several minutes thinking, "She can't be dead," and then I
felt flooded with grief and regret that I had not gotten up when she was still alive. I
had wanted to hold her and tell her I loved her as she was dying.
At this point I wished that she were in my home where I could have sat with
her as long as I wanted. I sat for several minutes with a flurry of images, thoughts,
and feelings. I had thoughts of what people do when someone dies and I lit a candle I
had brought, worrying that I might be breaking a fire code. I tried meditating, and the
following images came to me: a white duck soiled by an oil spill and a white sheet
hanging on a line with muddy spots on it. As I was trying to meditate, there was a
knock on the door. When I opened the door I saw Angelina with a cup of tea for me. I
reluctantly whispered to her that my mother was dead. She came in, put the tea down,
looked at Mother, and gave me a warm hug. I dissolved into tears and asked her not
to say anything yet. She very sensitively told me she had to report this to the Hospice
nurse. She left and I telephoned my family members with the news. My husband was
out of town and would return that evening. I then sat near Mother, not wanting to
leave her side.
About 30 minutes after I had spoken to Angelina, there was another knock on
the door. I opened it and there was my son. He gave me a warm hug and I again
dissolved into tears. He told me he had taken the day off and would do whatever I
needed. We sat together for about 2 hours talking about Mother, family, and death.
He told me he had felt uneasy about coming because he had never sat with a dead
person before, but he was not uncomfortable. During the next 2 hours, the director
and the Hospice nurse came in and were very supportive.
I knew I could not leave her body in the room overnight and that I would have
to call the funeral home which was, conveniently, right across the street. Reluctantly,
I began to organize the day. I told my son I wanted to bathe Mother's body and put a
fresh dress on her before the undertaker came for her body, so he went off to do some
errands. I was painfully aware that I would no longer be able to touch or see her body
or care for her. Angelina brought soap and water and helped me bathe Mother. I was
amazed at how rigid her body had become. Turning her over was like turning a
plywood board. I imagined, as I turned her over, that she might be saying to me,
"Easy, Kris, I'm not completely out of this body yet." I thoroughly enjoyed bathing
her and putting a fresh dress on her. Her eyes were wide open, and seemed to be
focused on something in the air above her. I thought her face looked weary and her
eyes seemed to be registering an inner experience.
When my son came back I asked him to drive Angelina home because there
were some pieces of furniture, the CD player, and several other things I had given to
her. I gave away most of Mother's things to the caregivers and had set 3:00 as the
time I would give her up to the undertaker. The director encouraged me to leave the
room when the undertaker zipped her into a bag and wheeled her out, but I felt
compelled to stay with her and to know about everything that was being done to her
body.
I followed the hearse to the funeral home and, once the staff had positioned
Mother's body, I sat with her for about an hour. I meditated and in my mind's eye
saw an image of a small reptile head, like the head of turtle, which was breaking out
of an egg. My interpretation was that Mother was already moving into a new mode.
This thought made me feel, simultaneously, relief and loss. I felt relief that she was
no longer struggling with all the pain of her life's issues, and I felt a loss because in
her new mode, she was no longer my mother. I spoke with a friend about these
thoughts and she speculated that relationships with loved ones who have died are very
different than relationships in life.
It was very hard for me to leave Mother alone in the cold room of the funeral
home. I drove past the funeral home several times that evening. The second day after
Mother's death a pathologist would be performing an autopsy on her brain to verify
the diagnosis of Alzheimer's disease. I had concerns about the autopsy, but decided in
favor of the value of scientific validation of her diagnosis.
On the third day after Mother's death, the funeral home director would be
driving her body to the crematorium. I wanted to accompany her body to the
crematorium.
Wednesday, September 18, 2002.1 wrote the following journal entry about
this third day after my Mother's death:
Beautiful morning. I watched the sun rise on the horizon. Nice talk with Mike.
He was moved to tears by our sons' caring response to my mother's death,
interested in the imaginal experience I had at the funeral home, curious about
the dead body, and hopeful that Mother's death will allow more time for us.
I dressed quickly and arrived at the funeral home. The room where
Mother had been was empty. The undertaker was sensitive and directed me to
follow his van to the crematorium. I had attended services for two
neighborhood children here at the cemetery next to the crematorium. The
director of the crematorium told me that the oven gets up to 1600°F. It would
take two to three hours to burn my mother's body to small bits and one to two
hours for a cooling process in the oven. They sweep the ashes from the oven
into a crack at the edge of the oven where the ashes fall into a tray under the
crack. The tray is taken to a counter where any bits are pulverized into ash and
then put into a container.
I parked and walked toward the crematorium, up a slight incline. The
air was moist and smelled of damp earth and oak. The crematorium attendant
and the undertaker lifted the cardboard box containing my mother out of the
van and put it on a small wooden gurney. I asked if they had sewed her up
after they removed her brain. The undertaker said yes, after they removed her
brain he had combed her hair over the incision. I wondered about blood. Was
it dried up? The attendant lifted the lid off and there was Mother. I felt
concern because her eyes looked distressed, more contorted than yesterday.
Was it a physical response to the removal of her brain, the sagging of flesh?
Or did her body experience trauma? I closed my eyes and waited for an
image. I saw a white figure of a body—a whole body. I felt it was the spirit of
her body. I could have stayed much longer, but I didn't want to keep the men
waiting. They put the cover on the box, wheeled the gurney and Mother into a
room and up to one of two huge ovens. They lifted the box into the oven,
turned a switch, and we walked out of the room. I felt glad that I was seeing
all of this. For some reason, it seemed very important to me to take in
everything. The funeral home attendant left, and I asked the crematorium
employee when I should return. Sometime after 2:00 PM I gave him my cell
phone number.
I felt sobs welling up. No more body. I had felt that as long as I had
her body, I still had a part of her. I worried about doing this to her body. I felt
apologetic, defensive: "I had to do something with your body, Mother. You
wanted to be cremated. Is the real thing, cremation, terrible? It seems like it's
cleaner, less distressing, than lying in a box alone—deep underground—
deteriorating slowly. I felt intense anguish. My mother was burning to bits.
I sat on the cement wall above the drive, level with the roof of the
crematorium, looking at the tar paper top of the building, the metal pipes and
the cement chimney that holds two round cylinders. Out of one cylinder, the
heat was radiating. It formed a moving pattern on the ground where the sun
was shining and I realized that the heat was coming from the oven that was
burning my mother's body. I thought about her body in the box. Her hands
were cold, her upper lip was turning blue, her head was resting on a satin
pillow. A white sheet was wrapped around her body, with head and neck
exposed. I dialogued with her body:
Kris: What are you experiencing?

Mother: Heat. It feels good, purifying.
Kris: Does it hurt?
Mother: The shock was the brain removal. This feels like a
process, a physical process. Pain is for sentient bodies.
I'm no longer sentient.
After this dialogue, I noticed that the employees were looking at me. I
was concerned that they might be bothered by my presence so I drove to the
redwood grove near my home. It was a warm, sunny morning with a slight
breeze. I sat on the stage, where I sat once with our golden retriever, before I
took him to be "put down," and where we had picnics on the 4th of July,
listened to concerts, and celebrated my sons' birthdays. I checked my
messages. Calls from clients, friends and sons. Messages from the outside
world and heavy feelings, the pull of the inner world.
So, where am I with the meaning of all this? The body continues to
have central meaning for me—a life of its own apart from breath and brain. I
saw in my mind's eye the spirit of Mother's body; arms and legs weren't
clearly defined but neck, head, and shoulders were. It was a whole, white
body. My eyes drink in the green of pittosprum and eucalyptus and I hear the
outside world—a neighbor's voice: "the lawyer's on the phone, do you want
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to come talk to him?" It is soothing to hear this familiar voice. I feel pulled,
compelled even, to go back to the crematorium where my mother is.
I returned to collect the box containing Mother's ashes and continued for
several weeks to live in sacred time—a dream-like state. I went through the motions
of dayworld life, but felt one step removed from the dayworld. The tasks of daily life
were dispatched as quickly as possible so that I could have pools of time to allow my
grieving process to run its course. My grieving process was punctuated by a simple
memorial service in California and a memorial and burial service in Northport. In
August, 2003,1 put the box containing Mother's ashes in a hole next to my father's
grave in the cemetery in Northport. I make regular pilgrimages to my parents' graves,
where I offer prayers of gratitude, musings, and requests for help, and where
responses from my mother and father come into my mind. My mother is no longer a
physical presence. She is now a psychological presence—a dynamic presence in my
mind. I continue a dialogue begun when I was an infant, with the presence of Mother
in my mind.
Reflection
Requesting the services of Hospice for my mother marked the point at which
she moved into the final stage of her journey through Alzheimer's disease into death.
Enrollment in Hospice signals that death is certain and imminent—expected to occur
within 6 months. From an archetypal perspective, Death became central as a palpable
focus of caregiving and a palpable presence in Mother's physical deterioration—an

invisible force tightening its grip on her. Mother and I were enacting Persephone's
confrontation with Hades: a pattern of anxiety, resistance, descent, surrender, return.
This pattern was at the heart of my experience as Mother's caregiver and, I
believe, this pattern informed Mother's behavior and inner experience of dying.
Throughout the last months of her life I moved between connection with her and
descent into my own depths, and I observed Mother making connections with the
human world (myself and other caregivers) and descent into inner depths that
motivated such behavior as scowling, teeth-gritting and a hollow-eyed face
murmuring "lonely."
During the first 2 days of my stay with Mother after her seizure, I tried to
loosen the grip of anxiety about meeting her needs by taking action. This worked
initially, but the underworld force asserted its presence in the form of unremitting
heartburn and mother's negative reactions to me, prodding me to open to the depths
of this situation. I sought guidance in the wisdom of books which encouraged me to
be in the moment, and to trust the dark depths. I began to use various techniques—
prayer, inner dialogue, music—as means of accessing unconscious needs, feelings,
and wisdom.
During the 2-week stay with Mother, she and her situation continually taught
me the lessons of the Eleusinian initiation. I learned daily the lesson that descent and
return is a continual pattern in human experience, and discovered that the crucial
point in the initiation process—choosing to acknowledge and surrender to the

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depths—requires slowing down, being patient, and finding ways (rituals) that enable
one to attend to—endure and engage with—rather than repress, deny, or dissociate
from inner forces. Michael Kearney describes this surrender as "the initiates' arrival
at their deep inner center, that essential place which is at once intensely personal and
continuous with the transpersonal" (1997, p. 179). In psychological terms, Kearney is
saying that the personal unconscious contains contents repressed by an individual,
and these contents are continuous with the collective unconscious, the contents of
which are universal. For example, I had repressed certain feelings about my mother,
and these feelings were part of my personal unconscious and were also informed by
the mother-daughter archetype in the collective unconscious.
As an initiate, my fear that I was inadequate to meet my mother's needs
triggered my descent into the chaos of repressed feelings. As I sat on the bed and held
Mother, feeling inept and rejected, I sank into memories which stirred feelings and
fantasies about my family, and this facilitated a feeling of closeness and connection
with Mother. While sitting with these feelings and memories, I experienced a timeless
moment during which I was nourished.
Unfortunately, accessing the timeless moment when one arrives at the deep
inner center, encounters Persephone, and sees through her darker eye, proved to be
elusive in my efforts to care for Mother. I continued to struggle with the point in the
initiation when one surrenders to the depths. My faith that surrender would be
valuable and would lead to return continued to be very shaky. I was aware of the
lesson from Dante that the way out of the dark wood is down, but felt compelled by
anxiety that I was not giving Mother the support she needed, thus I was reluctant to
take time away from attending to this dayworld agenda and attend to inner needs and
feelings. Giving time and attention is the sacrifice demanded of initiates by inner
forces.
My desire to connect with Mother and her reaction to my anxious mode
motivated me to search for effective methods of discerning her needs. I turned to the
imaginal dimension for guidance in this search. I discovered that methods from
imaginal resources—poets, spiritual traditions, archetypal psychology—were well
suited to the task of understanding Mother's needs because the goal was not cure but
support for her confrontation with and absorption by Death. Fantasies, stories,
imaginal dialogues, and awareness of the ancestors (in pictures, memories, and
mental images) became vivid experiences of past and present, inner and outer
interacting in the present moment. My imaginal dialogues with mother allowed me to
move to a "what if she could talk" mode—a shift from purely rational function to
rational function interacting with memories and imagination.
The dialogues with Mother and God did not give me concrete answers but
encouraged me to attune to the imaginal dimension. The guidance I received in my
dialogues with Mother provided crucial reminding of the importance of being in the
moment with her—of letting go of agendas, sitting quietly, and attending to the
feelings stirred in me. The value of this was validated by a direct, observable
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relationship between my sitting quietly with her and attunement to her, as well as
positive responses from her. The guidance I received from my dialogue with God did
not give me an answer to my question of whether or not I should move Mother to a
bed and board, but it underscored the importance of the imaginal dimension as it
occurs in unexpected signs and of waiting patiently for the answer to evolve.
My dreams were among the resources that provided a window into the
imaginal dimension. The dream I had at the conclusion of my 2 weeks with Mother
gives an underworld perspective of this experience—an imaginal version created by
my unconscious. The dream image of my feet not reaching the pedals of the bus, I
think, derives from the story my mother told about me as a child, watching her feet on
the pedals as she drove. I think my anxiety about the responsibility of backing the old,
grey bus down the hill is my lifelong anxiety in response to Mother's needs as well as
existential anxieties in the face of death, and the steering wheel pressing on my
sternum anchored the dream in the present body sensation of heartburn. I think the
dream shows that, on an unconscious level, I was aware that Mother's slow dying
process gave me time to maneuver myself out of my anxious, immobilized position—
to see that it was a slow process thus I did not have to drive or apply the brakes.
At the end of my 2-week stay with Mother I had learned to draw from the
imaginal dimension to discern her needs, and after I moved her to The Hacienda, I
continued to explore imaginal methods of communicating with her and supporting
her. When she started pocketing food and the Hospice nurse alerted me that this was
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the beginning of the inability to swallow, I turned to literature about the actual dying
process. I sought practical methods of caring for her body as well as imaginal
methods and rituals of caring for her soul. The article the Hospice social worker gave
me, "Preparing Family for the Death of a Loved One" (attached as Appendix E:
"Preparing Family for the Death of a Loved One") validated the importance and
possibility of ministering to the psychological and spiritual dimensions of a loved
one's dying process, and it offered practical guidance and support to me in my goal of
enabling Mother to have a peaceful death.
As in the past when my mother descended to a new level of deterioration, her
new symptom of pocketing food stirred anxiety in me, and she reacted to my anxiety
with irritation. She was within 2 months of death when she moved from her
engagement in the process of dying to connect with me and reprimand me by
responding to my anxious question "Do you want me to leave?" with an intense "Yes,
I doV From an archetypal perspective, I see this message from Mother as a call to
attune to her respectfully, not anxiously—to look with Persephone's eye, not
Demeter's.
Throughout Mother's final months I struggled with the transition between the
dayworld perspective of Demeter and the underworld perspective of Persephone. I
was an initiate grappling with the difficulty of shifting to Persephone's depth
perspective and with the mystery of how Persephone manages her rhythmic
relationship with both Hades and Demeter. In response to these questions, Persephone
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appeared to me during the workshop on intuitive painting. The paintings done during
this workshop depict my descent to the underworld.
The goal of the workshop was to provide painting supplies so that participants
could use paint to express inner life. I had set out on a sunny morning for the 1-hour
drive to the location of the workshop, listening to a Bing Crosby-Rosemary Clooney
CD I had bought to play for Mother. There was a brief lecture at the beginning of the
workshop to explain that participants were encouraged to set aside concerns about
technique or creating good paintings and to allow intuition to guide the painting
process. I felt light-hearted and eager to begin. I have been aware since grade school
that I have very little artistic talent and I looked forward to being able to play with the
paint and not worry about artistic merit. I wondered what I would paint. (The
paintings described below are attached as Appendix F: Paintings—Depiction of a
Descent to the Underworld).
My first painting was a chaotic mix of earth tones. After I finished this
painting I felt a dip in my energy and took a break—ate some trail mix, drank
water—and then began my second painting. As I worked on this second painting I felt
a major sea change inside, a heaviness that felt like someone had dumped an anvil
into my chest cavity. The second painting had thick swatches of black and purple.
After the second painting there was a break for lunch. I felt so tired I yearned for a
bed to nap on but made do with a comfortable chair where I closed my eyes for about
30 minutes. After lunch, as I began my third painting, I was feeling so heavy that it
was an effort to paint.
What emerged in this third painting was, I believe, an image of Persephone.
She is a stark, spectral figure in black, white and shades of purple with red irises. She
was and is a riveting response to my curiosity about death and a vivid example of
what I had been describing with psychological theories and poets' images: the
presence of the underworld in the upperworld. The deep feelings of yearning for
connection with the mother I experienced in childhood and the mother I experienced
in late-stage Alzheimer's disease were used as ingredients, like the colors of paint, in
creating the image. My unconscious, using inner and outer materials, created an
image of an archetypal motif.
I had painted a compelling, chthonic figure that exists in my depths and
expressed herself through intense heaviness in my body and as an image in my
painting. Here was a response to my question about the nature of Persephone and how
she maintains a relationship with Hades and Demeter—inner and outer. She is an on-
going, spectral presence in the depths of my dayworld experience that is dark—
married to Hades. She has an implacable, stark nature: forceful action and
supplication will not bring her back to the dayworld. Connection with Persephone
requires joining her in the depths; only then can her presence be felt in the dayworld.
This painting brought to life for me Nathan Schwartz-Salant's (1982) words: "the
way is through imaginal sight, a vision of the queen of the underworld, the archetype
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of everyone's departed soul" (p. 154). The vision of Persephone was the high point in
the Eleusinian Mystery of descent and return derived from a myth of the mother-
daughter relationship. In the variation of this myth that Mother and I were enacting,
the mother was drawing the daughter into a relationship with the underworld.
Not long after my painting of Persephone, I had two additional experiences
that seemed to address my question about the relationship between dayworld and
underworld. I had one of my dayworld experiences of immersion in cleaning Mother
after she had had a bout with diarrhea, during which I felt embarrassed by and
responsible for the mess, and relieved when I was alone with her in the bathroom.
After this incident I had a dream where I was in a rural POW camp and had to use a
primitive, dirty bathroom that was partially open. I could see menacing men looking
in at me. I was disgusted by the bathroom and fearful of the men. In the next scene of
the dream I was walking down a busy street in New York City and marveled that here
I was in a disgusting bathroom in a POW camp and no one on the busy New York
City street could see this going on in me. In the next scene I was back in the POW
bathroom anxiously trying to figure out how to get to my other (ordinary) life. I
thought of finding something familiar to the ordinary world as a means of returning. I
grabbed a tube of Crest toothpaste and was relieved to find myself back in the
ordinary world.
This dream seems to be my unconscious at work addressing my question of
how to maintain a relationship between ordinary world (upperworld) and underworld.

In reflecting on the use of something familiar as a means of returning from
underworld to upperworld, I see that I often used familiar music to bring Mother from
the depths of the underworld into connection with me in the dayworld. I also used
music as a ritual means of descending into the depths of the underworld. I think of
Oliver Sacks's description of using the familiar music of Mendelssohn to access the
underworld dimension where he found his lost limb.
As I moved between the dayworld experiences of feeding and ministering to
Mother and the images of decay and death at the heart of this experience, the
shamanic journeying helped me access and attend to the depths of the underworld
dimension of my experience with Mother. During the consultation with the physical
therapist I encountered images of the underbellies of reptiles—turtles and snakes. I
was engaged by the patterns on their underside and noted that I was not afraid when I
looked from this perspective, but also noted that I would have been afraid if I had
been face to face with the snake.
This experience led me to sign up for the conference on shamanic journeying
as a resource for healthcare professionals. The experiences of journeying in the
imaginal realm during this conference produced two animal images as inner guides. A
monkey with playful energy encouraged me to lighten up (I had been told this often
by those who know me well), and offered the intense love a child has for a parent.
The other animal image was a snake—a creature I have always feared.
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On one of my journeys, a snake arrived and, because he did not have a hand
for me to hold, encouraged me to join him in his jiving dance. My first response was
negative alarm, "Oh, no! You, a snake, are my guide?" He immediately shifted from
jiving snake to a fierce snake—coiled, fangs out, in my face, threatening. I recoiled in
terror and felt his message was, "Watch it, lady. You demonize and reject me and this
is what I become in you!" I felt an immediate urge to assuage his anger: "I'm sorry,
I'm sorry. Please don't hurt me." I awkwardly jived beside the snake and was
charmed by his spirit. He had the nuance of an adolescent boy doing his thing. The
snake is an archetypal image of movement between under and upper worlds, of death
and renewal, and of the instinctual. My negative view of the snake is a common view
found in myths and stories of menacing serpents. The snake as inner guide reminded
me that there are positive and negative aspects of inner forces and denying or reviling
inner forces elicits their negative aspects: the revenge of the repressed and unvalued. I
made a mental note to be very careful not to in any way revile or reject snake energy.
Through the rest of the conference I experienced bouts of anger, depression, and
moments of grace—one of which was the discovery of a human guide.
These imaginal journeys provided a depiction of my inner world in the form
of stories with archetypal themes. I was in touch with forces within myself and was
observing symptoms—facial expressions, teeth-gritting, body gestures—motivated by
inner forces in my mother, particularly at night as I sat beside her bed. I needed help
responding to Mother's symptoms and turned to the methods of the Chalice of

Repose. With harp and vocal music, Katy intervened in Mother's dying process.
Through a ritual derived from the Christian monastic tradition of ministering to the
dying, Katy attuned to Mother's inner world in such a way that Mother's behavior
changed observably in response to the music. Mother's shift from deep sleep to
grimacing, thrashing, and curling into a fetal position, to a calm, watchful expression
seemed to be a confrontation with disturbing inner forces. The fact that she slept
soundly through the night after this experience leads me to believe the ritual with
Katy relieved Mother's inner tension.
Because of Mother's response to Katy's ministering and to me when I
attended to her, I felt less anxious about being an inadequate caregiver. I had found
methods that helped me attend to my inner depths and attune to Mother. From an
archetypal perspective, the guidance I was given as initiate into the mysteries of the
depths channeled my anxious energy into meaningful rituals that established a
communication between underworld forces and dayworld ministering.
The reconciliation service guided by Father Bob provided a ritual for
accessing, acknowledging and reconciling the intense feelings I had about mother. I
began to plan the vigil with the hope that it would communicate to Mother the love
and support of her family. I found guidance and support from Father Bob, my family,
the director of The Hacienda, the Hospice nurse and social worker, The Music of
Silence, The Book of Common Prayer, and music—"Watchman, Tell Us of the Night"
and "Amazing Grace." From an archetypal perspective, this ritual brought the
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underworld into the center of the dayworld and gave it a place—a topos. My mother,
who exuded the stark, spectral essence of Persephone, was held in the center of our
family gathering, and we found ways to attend to her—to care for her and see her as a
part of us—through the rituals of prayer, Scripture, music, laying on of hands, and
communion. The moment of connection between mother and me was for me a
timeless moment of grace at the peak of the ritual.
Mother's final week of life in her physical body was a playing out of the
theme of descent and return that had been enacted throughout her journey through
Alzheimer's disease. When I tried to feed her soup and set her in the sun she recoiled,
as if signaling me that she was so close to death that she was no longer comfortable
with soup and sun. This stirred the familiar pattern of my efforts to connect and hold
her close, her negative reactions, sinking into the depths, and feeling connected
during the music of "Alexander's Ragtime Band" and "Peer Gynt. "
When I moved into mother's room during her active dying process, her
movement in the descent and return pattern was characterized by descent into deep
sleep after the administering of morphine and gradual coming to consciousness which
brought on choking and expressions of distress. My pattern of descent and return was
characterized by anxiety, descent into the maelstrom of my inner world, and return to
Mother's presence and the ministering of family, friends, and staff of Hospice and
The Hacienda. The dream I had about dismemberment and my sister's doll, Melody, I
interpret as a descent similar to the journeys described by shamans. I traveled to inner

depths and experienced the dismemberment associated with intense affect. From a
depth psychological perspective, the fear of my own dismemberment and the horror
of seeing Melody dismembered is the universal fear of Death and the personal horror
of seeing the dismemberment of a transitional object—something that acts as a
maternal substitute.
On mother's final night, her hyperventilating triggered intense anxiety: mother
was in distress and I was not able to help her. I tried to regain control, felt inept, and
descended into the depths of sleep. Mother took her leave of me while I was deep in
sleep. I have no memory of a connection between us during the final enactment of the
pattern of anxiety, resistance, descent, surrender, return. I know we both surrendered
to the depths of sleep, and I know she died after I told the caregivers to change her in
the morning. As I write this, I feel a wrench that I was not able to hold her and have
one last exchange with her. I feel good about the fact that I was with her when she
died and she knew she had not been left alone to die.
The death of a physical body occurs at a point in chronological time when the
soul, an essence that enters and enlivens a particular body, leaves the body as a
unique pattern of energy, and continues as an interactive part of the spiritual
dimension of the cosmos. From an archetypal perspective, the afterlife can best be
understood through stories about what it looks like when a soul leaves its body.
Ancient myths and epic poems describe the afterlife as an underworld where shades
live in a dark, gloomy landscape; or in Elysian Fields; or in a landscape organized as
Inferno, Purgatory and Paradise; or in a bardo—a position between incarnations.
In my story of what has happened to my mother's soul after it left her body, I
continue to experience the return of her unique energy, her essence, as a presence in
my mind and body. I have a memory of how her gnarled hand felt in my hand, and
memories of her gestures and what she said and did are an on-going presence in my
mind. During the first year after her death, particularly when my sister moved into a
health crisis, my mother's presence stirred uneasiness in me. I felt a great loss and
yearned for her as Mother—someone I loved and was loved by—someone to whom I
was close. I also was reminded of her capacity for cruelty as I became involved with
my sister's care, and I feared Mother's energy when my sister hovered near death. I
had a dream during this time in which I was pleading with my mother to help my
sister. My mother responded that she would try but she had to "get on to a better
place." I interpreted her response to mean that she was making amends for sins
committed during her life on earth.
It is now y/2 years since my mother died, and during the last 6 months I have
experienced a change in her presence. I no longer feel uneasy or bereft when I stand
before her grave and talk to her. I feel a positive presence capable of attending to my
prayers. I attribute this shift to an evolving relationship between Mother and me that
continues in the imaginal dimension.

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It is time to close this last chapter of my dissertation on Alzheimer's disease.
When I look back at Chapters 3 and 4, Mother is still alive. But here, at this point in
my dissertation, she is dead. As I reflect on the meaning for me of the journey with
Mother, two figures come to mind—Persephone and the Snake. I seek the wisdom of
the underworld by dialoging with them.
Kris: What is the meaning of my journey to the underworld?
Persephone: It has instilled a desire to be with me.
Kris: What does being with you mean?
Persephone: Acceptance of death—emptiness—space—suffering, all as a
means to the still point where I am.
Kris: How has this affected my daily life?
Persephone: That is in process. You face the challenge, consciously, of
having a relationship with the Snake and allowing his energy to carry you to a
daily spiritual practice that makes tending soul your central focus. The daily
upperworld shifts to a peripheral extension of tending soul.
Kris: I have no energy—I'm at a loss right now.
Persephone: Be in this moment. Don't do anything. See what happens.
Kris: I feel sadness, tears, strong desire to curl up, pull blankets around me,
sleep.
Persephone: Follow your desire. See what unfolds.

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Kris: Nothing. Sleep, followed by stillness, followed by an urge to see what
the Snake has to say.
Kris: Snake, where are you in this nothingness?
Snake: I'm deep in.
Kris: What does that mean?
Snake: I'm hibernating. This is a season when I lie low.
Kris: Do you lie low because I'm trying to extract something from you,
harness you, for upperworld agendas?
Snake: Yes!
Kris: What do you say about my mother's gift to me?
Snake: She loved you, she was mean to you. She cared for you, you cared for
her. She led you into the underworld where nothing is simple, nothing is as it
seems, nothing is meaningful—full of meaning.
Kris: How can I stay centered in soul as I live through the daily upperworld
agendas?
Snake: Practice silence before moving into the day, before moving into
conversation, before moving into outer and inner dialogue, before moving into
action, before moving into communion.
Kris: I'm picturing what this would look like. Would it be a reflective pause,
as if I weren't quite sure what to say, do, think, make of what's going on at
any given moment?

Snake: Yup.
Kris: So, you're soul energy that hibernates, needs tending, becomes
constricting, fanged, poisonous, terrifying, aggressive, coils and strikes at
perceived enemies—when reviled, devalued, rejected, abused?
Snake: I am the deepest, most vulnerable, most lethal, most vital, most
essential core of you.
The wisdom communicated to me by these two figures speaks to the meaning
of the journey with my mother. These two figures bring to my conscious mind
knowledge of the crucial role the underworld plays in the agendas of my daily life.
For example, the agenda in this moment is to finish writing Chapter 5.1 have
struggled with great resistance in writing the conclusion to this last reflection. I have
been easily distracted by family events and bouts of anxiety, anger, and depression, as
well as physical symptoms of inner distress. The resistance is dispelled when I find a
way to the depths of my feelings. There is always the uncertainty and fear of
attending to the depths—the Judaeo-Christian valley of the shadow of death, the
Buddhist emptiness, the existential nothingness, the physicist's quantum vacuum,
Jung'spleroma, Sacks's abyss. There is always Persephone, whose rhythmic
movement between organic and chthonic, flower and stone, temporal and eternal is a
central pattern in the cosmos. In her nature is the mystery of the relationship between
descent into death and return to life.

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My movement in this moment from anxious resistance to embracing the
depths is facilitated by the music of Richard Einhorn's Voices of Light (1995). This
music opens my heart and allows the feelings to flow. As the music begins I feel
heaviness and imagine that I am sitting close to the figure I had painted—Persephone.
My initial reaction is fear of her dark, implacable nature. Her body is rigid and cold,
like stone. She is a stark, magnetic specter. I move from fear to fascination to ecstasy.
I am drawn to her stillness and observe something intense happening to my body and
inner life—my soul. I move from feeling transfixed to an inner sensation of flowing
that stirs a sigh and a heaving of my chest.
My ego presses for a shift into writing mode, "Let's finish this project!" I
write a few sentences and the feelings dissipate. I have left Persephone and scrambled
up the hill to the dayworld. Something in me wants to return to Persephone. The
pleasure of sitting close to Persephone transfixed by the still point of Death draws me
back. I shift my attention to the music and imagine I am merging with Persephone. As
I listen, Persephone's nature becomes more vivid:
A stark, haunting figure.
A figure of static rhythms—prosaic, tragic, subtle, unexpected.
A figure of chords that engage and twist emotions:
minor chords of an unyielding refrain;
harmonic chords of eternal chorus;
pure, stark, haunting voices.

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There is movement from forte through diminuendo to silence;
out of silence come haunting voices from the otherworld,
followed by the unyielding refrain,
followed by arias that tell of a story both prosaic and tragic,
followed by harmonic chords of eternal chorus,
followed by silence,
followed by haunting voices,
followed by eternal chorus.
The music ends with the eternal chorus singing, "So God, King of Heaven,
wills it; and so it has been revealed by the Maid" (Einhorn, 1995). The arias tell the
story of Joan of Arc, who saw visions and heard voices which inspired her to become
a heroic military leader. She was put to death as a witch who trafficked with the
otherworld—a world outside approved religious doctrines. Such trafficking is fraught
with inner and outer hazards.
Throughout the writing of this final reflection I used music as a ritual—a
means of descending to my inner depths. Again and again I moved from fear, as I
faced a blank page, to descent—surrender to the depths of feelings and to a fixed
point where I was going nowhere and doing nothing. If I waited long enough, my pen
began to move easily across the page. The fixed point is where I merge with
Persephone— that compelling, dark figure within me who brings me into relationship
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with Death. My mother's journey through Alzheimer's disease into death drew me
into the archetypal initiation ritual of descent and return.

CONCLUSION
The goals of this dissertation have been (1) to analyze the impact of the
Western cultural attitude toward cognitive impairment and dying on those who have
Alzheimer's disease, and (2) to search for methods of discerning and meeting the
psychological and spiritual needs of people who have Alzheimer's disease so that
caregivers can intervene more effectively with less emotional toll.
Summary of Narrative Sections
In the narrative sections of Chapters 3, 4, and 5,1 described my
experience with my mother's course through Alzheimer's disease, methods that were
effective in discerning her needs, and my gradual shift from seeing her disease as
tragic and pathetic to perceiving it as an enactment of descent into the underworld—
inner depths. In terms of qualitative research, the narratives are the data of the
relationship between participant observer and subject. As participant observer, I
shifted from the Western cultural view of Alzheimer's disease, which focuses on the
organic cause of symptoms, to a view informed by depth psychology, which focuses
on the unconscious psychological motivation for the symptoms of disease. The depth
psychological view enabled me to discover and develop the following methods of
understanding and treating my mother's symptoms: attention to body language and to
the metaphoric meaning at the heart of symptoms using music therapy, Jung's active
imagination, shamanic journeying, Hillman's psychologizing (reflection, interiorizing,

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mythologizing), depth work suggested by Kearney as a method of treating soul pain,
and Meade's rituals that acknowledge and support the transition into death.
Early Stage
At the end of the early stage of my mother's Alzheimer's disease, I had begun
to see her symptoms and disease process from an archetypal perspective: I recognized
the similarity between mythic stories of descent to the underworld and Mother's
periodic disappearance into an altered state of consciousness. I began to perceive her
symptoms as cryptic messages about her inner experience and learned to attune to
them as a means of understanding her and communicating more effectively with her. I
also recognized the value of attending and surrendering to the depths of certain
experiences with my mother, which often led to a timeless moment where I found
connection with her and renewal. If I had had this knowledge about how to attune to
Mother's symptoms when they first appeared, I would have been better able to
understand her inner experience and meet her needs. I would have been less focused
on what was wrong with her and more engaged with her symptoms as messages.
Middle Stage
During the middle stage of my mother's Alzheimer's disease, I became very
familiar with the recurrent pattern of descent and return in her behavior, in the
behavior of other residents of the Alzheimer's facility, in the relationship between
Mother and me, and in my own inner life. I realized over and over that my attitude
toward Mother and her response to me shifted when I attended to my own inner life
by slowing down and being still. This offering of time and attention enabled me to
perceive the underworld dimension of Mother's situation and to connect with her.
My understanding of the inner experience of both Alzheimer's disease
sufferers and their caregivers was enlarged and enriched with each descent. I learned
to see the underworld dimension of this disease in the eyes and actions of Mother and
the other residents of the facility, and became more aware of issues that were stirred
in my own depths: fear of losing Mother, fear of death—engulfment, fear of
inadequacy, and fear of being in Mother's situation one day. I also experienced
pleasure in the timeless moment when I opened to the depths of Mother's situation.
Final Stage
As my mother moved into the final stage of Alzheimer's disease, I discovered
more methods for discerning inner experience and meeting needs—both Mother's and
mine. I made use of imaginal resources such as active imagination (inner dialogues
with Mother and God), dreams, shamanic journeying (as a means of entering and
exploring the underworld), music thanatology (the Chalice of Repose), and rituals
(the reconciliation service and vigil) which helped establish a relationship between
the underworld (the unconscious depths of the intrapsychic and interpersonal
dimensions of experience) and dayworld ministering.
Many of these methods that I discovered are used in the care of those who are
dying or are in a coma, but they have not become part of the current, mainstream
treatment for Alzheimer's disease. Certainly there are and have always been
caregivers who, because of their nature, rely on empathy and intuition in assessing
and meeting inner needs of those in their care. But, as Dr. Deborah Forrest pointed
out, the emphasis in Western healthcare continues to be on detachment, objectivity,
and management of symptoms in the treatment of those with Alzheimer's disease.
The research described in the Narratives suggests a different emphasis in
training those who care for people with Alzheimer's disease. In the archetypal
approach to treatment, the goal is attunement to symptoms as a means of
understanding inner needs. Attunement and empathic response to needs such as the
need for relatedness help reduce anxiety for those who cannot express it directly. The
reduction of anxiety in those with Alzheimer's disease allows caregivers to better
meet dayworld needs as well as the more existential one of the fear of aloneness.
Use of the archetypal approach could play a crucial role in training caregivers
because, by including the underworld dimension, it challenges the belief that people
with Alzheimer's disease have no inner life, no sense of self, and are thus wretched,
empty shells beyond hope. These negative metaphors, beliefs, and attitudes have
shaped not only the experience of those who have Alzheimer's disease, but also the
treatment given by caregivers. The archetypal approach offers a richer understanding
of Alzheimer's disease and fosters a more enlightened cultural view of this disease, as
well as more effective treatment methods.

Summary of Reflections
The Reflections in Chapters 3, 4, and 5 are formulations—interpretations of
the data of the narratives. These interpretations address the need for a more
enlightened view of Alzheimer's disease. In them I adopted the ritual of the
Eleusinian Mystery as an interpretive framework for analysis of the significance—the
latent meaning—of my mother's journey through the stages of this disease. This
framework offers a new way of perceiving Alzheimer's disease. At the heart of this
interpretive framework is a mother-daughter story—the myth of Demeter and
Persephone. This mother-daughter myth, unlike many father-son myths about the son
overthrowing the father, tells of loss and recovery, descent and return (Pollack, 1996,
p. 73).
In these interpretations I identified my mother's journey through Alzheimer's
disease, and then her confrontation with death, as an enactment of a mythic motif:
Persephone's abduction to the underworld by Hades, her mother's search for her,
Persephone's marriage to Hades, and her cyclic movement between Hades and
Demeter. In the context of the Persephone myth I came to perceive my mother's slow
process of both mental deterioration and dying as an initiation during which, as
mother and daughter, we experienced many variations on the theme of loss and
recovery—descent and return.
My method of interpreting the interpersonal and intrapsychic experiences of
Alzheimer's disease focused on how the mythic pattern of descent to the underworld
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and return to connection with the human dayworld was enacted in Mother's behavior,
in our relationship, and in my experience as Mother's caregiver. I recognized
Persephone's movement from fear to love for Hades when, clinically as caregiver and
personally as daughter, I found meaning in the timeless moment where I experienced
connection with Mother and insights into her inner experiences. This move facilitated
both a release of tension and a reconciling to the miseries of Mother's situation and
the maelstrom of my own conflicting priorities and feelings. It became a meaningful
ritual when I saw and felt the underworld dimension of Alzheimer's disease in
Mother's situation and was moved by these experiences that are considered by many
to be meaningless and dreadful. I moved from feeling overwhelmed and rejecting to
embracing—seeing the situation in Persephone's mode, through Persephone's eye. I
have concluded that this pattern of descent into a timeless moment and return to
dayworld agendas occurs often when caring for someone with Alzheimer's disease.
I was drawn into descents to timeless moments early on my journey with
Mother. Some of these moments were peaceful times of sitting close and some were
moments when anxiety, anger, disgust, confusion, or despair gave way to the depths
of these feelings. After the spectral figure of Persephone appeared in my painting, the
pattern of descent, timeless moment, and return became more compelling for me. The
stark figure and heaviness in my body brought new meaning to my understanding of
how Persephone's myth was unfolding in my experiences with Mother. I saw and felt
the figure of Persephone as death in the depths of life. Connection with Persephone
has become engagement with the mystery of death and its relationship with life, as
well as awareness of the personal and transpersonal qualities of this archetype that
exists in my depths. The dark, implacable, austere aspects of the figure I painted
depict the dynamic of the archetypal queen of the underworld, a dynamic I perceived
in the mother of my childhood, as well as the mother who was dying, and a dynamic
which I became conscious of, at work in my own depths.
Surrender to the timeless moment where Persephone presides holds the
potential for reconciliation—healing of inner conflict. In a timeless moment,
opposites of life and death, hate and love, and concerns of how to carry out dayworld
agendas are held in a space and allowed to become parts of a whole where there is
room for the unexpected. Such a moment is often followed by a new way of seeing
dayworld agendas. This would be explained in Freudian theory as reconciling
ambivalences effectively which frees up psychic energy formerly deployed to
maintain ego-alien contents in repression. Freudian theory can also be seen as
addressing the psychological pattern of descent and return in describing the two
primal instincts at work in the human psyche as Eros and the death instinct. In terms
of the model I have adopted, the death instinct pulls us toward the still point and Eros
drives us into connection with the human dayworld.
I had begun this study steeped in the theories of Freud, Jung, and Hillman.
These theorists used concepts such as ego, id, unconscious, and repression as well as
myths about Oedipus, Psyche, Eros, Hades and the underworld to explain and
379
describe the psychological experience of descent and return—nekyia. They provide a
link between scientific explanations and imaginal descriptions of inner life and they
speak to the complexity of the descent and return I experienced continually during
Mother's decline.
Drawing from these theorists, I framed the descents of those with Alzheimer's
disease and their caregivers as a psychological experience similar to the experience of
the rituals of an ancient initiation and described the value of these descents for me as
a caregiver. This formulation offers a more comprehensive response to the question
of how to discern and meet the inner needs of those with Alzheimer's disease than the
previously mentioned list of specific treatment methods. For caregivers, knowledge of
how to attend to the depths of their role can help not only in discerning needs of those
in their care, but also in finding the fine line between aversion and detachment from
the depths on one hand, and engulfment and depletion on the other.
Because I experienced the pattern of descent and return so intensely and
repeatedly while caring for my mother, I have emerged from this initiation knowing
the value of surrender to the depths, and knowing how to surrender. I now know that
when I face an abyss, it is possible for me to move from despair to surrender. This
knowledge bolsters me as a writer facing empty pages, and as a clinician and family
caregiver facing someone who is suffering. I have learned that the most effective
method for discerning and meeting subjective needs is to surrender to the suffering
and wait to discover the meaning with faith that out of the act of surrender will come
guidance.
As I reflect on my journey to the depths, images of what I was shown in the
underworld come to mind. I was shown images of decline—an old, grey bus; an
image of a child-like, playful monkey; an image of the Snake as he exists in my inner
life; an image of Persephone as the personification of how the underworld is at the
heart of the upperworld, as a model for surrender to the depths which leads to return
to the upperworld, and as an austere, haunting dynamic operating in my depths.
Because of my experience with these images, I am more familiar with my soul, and
the soul level in a relationship with those who have been abducted to the underworld.
Implications of This Study
In looking back to the treatment of Dr. Alzheimer's patient, Frau D., I believe
the care of Frau D. would have been vastly improved if she had had caregivers
capable of discerning her inner needs. As noted in Chapter 1, throughout the history
of Western civilization, senile dementia has been seen as a pathetic condition
resulting from weak character or organic pathology. This negative cultural attitude
has persisted in the 21st-century, although treatment for those with Alzheimer's
disease has become considerably more humane than that which Frau D. received.
During the last 30 years, Alzheimer's disease has become better understood.
Resources such as daycare, home health aides, support groups, and Alzheimer's
facilities, as well as treatment methods such as Validation Therapy and The Best
Friend's Approach to Alzheimer's Care have improved the quality of care.
Unfortunately, even though the quality of care has improved, the emphasis remains
on upperworld agendas: management of symptoms and palliative care. At a large
conference in November, 2005, on Alzheimer's disease entitled "What We
Know/Where We Are Going," a professor of public health and neuroscience and
former director of an Alzheimer's disease center stated that treatment of behavioral
symptoms of those with Alzheimer's disease is "difficult—an art." The heading
Current Treatment ofA.D. listed behavior modification, antidepressants, major
tranquilizers, cognitive therapy, cholinesterase inhibitors, and memantine as current
modalities for treating A.D. My research suggests an additional treatment approach:
use of archetypal methods which attend to the underworld dimension of the
experience of Alzheimer's disease. The aim of this approach is to communicate with
the soul, and the underlying ethos of this approach is the belief that the soul of a
person in an altered state of consciousness is accessible and can be reached through
respectful engagement with and support for the underworld dimension which
motivates the behavior of people in these states.
The archetypal approach—looking at Alzheimer's disease through the lens of
Persephone—will inevitably stir questions such as, "What are the difficulties of using
this approach?" and "How can busy clinicians and caregivers implement the
archetypal methods of attending to the soul or underworld dimension of their patients
while treating the daily needs of those with Alzheimer's disease?" The difficulties
382
have been articulated by healthcare providers Oliver Sacks, Michael Kearney,
Deborah Forest, and Ann Cason, who answer these questions with stories of how
their practices changed when they recognized the limitations of traditional medicine
which encourages clinicians to be detached and objective in relating to patients.
These healthcare providers describe how recognition of these limitations led to a shift
in stance, or attitude, toward patients. They made this shift by attending to the
suffering of the soul—by treating the subjective as well as physical experience of
patients using methods such as including biography in a case history, using guided
imagery, using meditation, and attending to the metaphoric, transpersonal meaning of
symptoms such as delusions and hallucinations.
The shift to attending to the soul of patients is described as a shift from
helping to serving by Rachel Naomi Remen (1996), founder of the Commonweal
Cancer Help Program in Bolinas, California, and assistant clinical professor of family
and community medicine at University of California, San Francisco School of
Medicine. Remen explains that when a clinician helps a patient there is inequality—
the clinician uses strength to help those of lesser strength. Serving a patient, maintains
Remen, is a relationship between equals: "We serve with ourselves. We draw from all
of our experiences. Our limitations serve, our wounds serve, even our darkness can
serve" (p. 24). Remen addresses the physicians' challenge of rethinking the
traditional practice of maintaining detachment and objectivity with patients: "We
cannot serve at a distance. We can only serve that to which we are profoundly
383
connected, that which we are willing to touch. This is Mother Teresa's basic message.
We serve life not because it is broken but because it is holy" (p. 24). Remen
underscores Michael Kearney's emphasis on depth work for caregivers when she
comments, "Service . . . is an experience of mystery, surrender, and awe. . . . From
the perspective of service, we are all connected: All suffering is like my suffering and
all joy is like my joy. The impulse to serve emerges naturally and inevitably from this
way of seeing" (p. 25).
Many physicians and caregivers cited in this study have discussed the
difficulties of making the shift from helping to serving and have described how and
why they made the shift. At the center of the question of "How?" lies the practice of
reflection and empathy in the treatment of patients, and at the center of the question
of "Why?" lie the stories of better understanding and ability to treat symptoms,
reduce soul pain in the patient, and greater satisfaction for the clinician or caregiver in
doing the work of healing. These stories offer practical guidance and inspirational
testimony to the value of including attention to the underworld dimension, the soul, in
the treatment of disease. Establishing a dialogue between the physicians who have
shifted from helping to serving, and those conducting formal research seeking
improved methods of treatment for Alzheimer's disease might enable the speaker at a
future conference on Alzheimer's disease to describe examples of treatment methods
drawn from the work of Michael Kearney, Rita Charon, Cecile Carson, Arnold
Mindell, Ann Cason, and Deborah Forest.

Needfor Future Research
This heuristic and hermeneutic study of the experience of Alzheimer's disease
differs from empirical and phenomenological studies relevant to the research
questions, examples of which are a study of the importance of music for residents in
nursing homes, and a study focusing on the spiritual needs of the cognitively
impaired. These studies generated statistics that I found enlightening, but what was
missing in these studies was a more organic study—one that showed the context of
the Alzheimer's disease experience and how various techniques worked in this
context. That is what this study presents.
Several topics suggested but not encompassed in this study include a
comparative analysis of cultures in which elders are valued that focuses on the
incidence of A.D.; a phenomenological study of health care professionals involved in
the challenges of making a diagnosis and prescribing treatment for A.D.; an extension
of my heuristic study to include a broader group of subjects—a phenomenological
study exploring the impact of fear, anger, and guilt engendered in healthcare
professionals, caregivers, and family members who care for someone with
Alzheimer's disease, focusing on differences between at-home care and institutional
care; a study comparing the incidence of negative symptoms in those with
Alzheimer's disease who are cared for at home with those cared for in institutions; a
more systematic study focused on the efficacy of techniques discussed by Arnold
Mindell, Deborah Forrest, and Morris Friedell (empathic relationships, intuition,

imaginal experience, and use of music) in communicating with and supporting those
with A.D.; a study of the application of attachment theory to those with A.D.; and, a
study of the role of the community in the care of those with A.D.
Needfor a Cultural Shift in the Treatment of Alzheimer's Disease
The importance of attachment and the role of the community in caring for
those with Alzheimer's disease became evident during the terminal phase of this
study. As my mother moved into the active dying phase, the negative cultural attitude
and the lack of a community to support the patient and caregiver during the descent
into physical death became evident. The issue of attachment was active in me as
separation anxiety and as a yearning for connection to a community and a spiritual
tradition that would guide and support my mother's dying process. Other authors
have spoken to this issue: Staton, Shuy, and Byock (2001) describe the need that was
expressed by subjects of The Missoula Demonstration Project for a human bond.
These authors reported that participants found ways to maintain connection to others
in the face of death and they expressed a need for a connection with some aspect of
existence beyond the death of the body (pp. 239-240). The work of these authors
speaks to the importance for the dying of attachment on a personal as well as
transpersonal, or spiritual, level. This means that caregivers, whether physicians,
professional caregivers, or family caregivers, are challenged to connect with and
support the soul of those in their care who are ill and dying.
Ira Byock (1997), in his work with death and dying, advocates for developing
community support for the dying. He echoes James Hillman in emphasizing the role
of the imagination in developing more enlightened and loving community care for
members who are dying. Byock and The Missoula Demonstration Project explored
the meaning of death in the human community and found that with every good death,
when the community holds and supports the dying member, both are enriched.
Meaningful rituals that minister to the dying make dying part of living—death
becomes integrated into the life cycle and changes the view that death is a medical
failure with no psychological or spiritual significance. My study suggests that the
same may be said for developing rituals that minister to those in the earlier stages of
Alzheimer's disease, as well as those in the final stage.
In contemporary American culture, a person is diagnosed and treated for
Alzheimer's disease apart from a community and a spiritual context. The diagnosis is
usually given in an office by a healthcare professional to the patient and one or more
relatives. The ritual that is set in motion by this diagnosis is not a communal ritual,
but an individual's, or family's, search for resources to deal with what is anticipated
to be the onerous, depleting labor of caring for someone who has Alzheimer's
disease. In my research I found no mention of a community that gathered around a
member who had been diagnosed with Alzheimer's disease. In my experience with
churches I have observed support in the form of providing space for adult daycare and
support groups and in the form of members of congregations helping with

transportation and meals during a crisis; but the churches do not have rituals that
demonstrate the value of members who have Alzheimer's disease, nor do they have
meaningful rituals to support the long dying process of Alzheimer's disease.
The outcome of this study exposes the impact of the negative cultural attitude
toward those with Alzheimer's disease, and poses the following question: how can we
develop communities of caregivers who are capable of using effective methods and
meaningful rituals in caring for the soul of those with Alzheimer's disease? The
response proposed by this study is that, as with Persephone and the initiates of the
Eleusinian ritual, for caregivers there is personal relevance in embracing rather than
dissociating from the experience of descent and return that is inherent in supporting
those progressing through Alzheimer's disease. This study also demonstrates that
inspiration and guidance can be found in the wisdom of those whose practice of
caregiving includes attending to the underworld dimension of Alzheimer's disease.
Physician Michael Kearney and caregiver Ann Cason became guides whose
knowledge of the depths helped me find my way to valuing and supporting my
mother's decline and death.
The need of a person with Alzheimer's disease to belong—to be attached—to
the human world, and to be supported throughout the decline and ultimate transition
into death continues to go unmet, according to the majority of stories presented in this
study, because current treatment does not incorporate methods that attend to the
underworld dimension of this disease. The poignant theme of wanting to go home is

388
heard often from those in mid- to late-stage Alzheimer's disease. This has been
interpreted in several ways. Some caregivers interpret a loved one's desire to go home
as a request to leave an institution and return home, or as a desire to return to a time
in the past, either the home of childhood or the home where one's children were
raised. I have come to understand the longing for home as both a personal and a
spiritual yearning. The personal is a longing for a place where one belongs and is
valued. The longing for a spiritual home is a longing for a place that has been
characterized by many religions as tension free: a place of resolution, completion—a
still point. As a culture and as individual clinicians and caregivers we face the
challenge of understanding and supporting the soul of those in our care who are
journeying through Alzheimer's disease into death. In keeping with the methods of
the archetypal approach to treatment, and with the wisdom of clinicians and
caregivers who practice this approach, I offer images for reflection, believing that
reflection leads to a shift in the way one sees, which leads to a shift in the way one
acts.
I conclude with three images. One is my mother lying next to me, looking at
me with no sign of recognition. With a hollow-eyed, haunted expression she
murmurs, "lonely." The second is the logo of DASNI (Dementia Advocacy and
Support Network International): a winged turtle with a forget-me-not in its beak,
standing for the human dignity of not only Alzheimer's patients but of all who are
old, poor, weak, disabled, or incurable. The third is the one with which this study
389
commenced: a resident in an Alzheimer's facility greets you with a question spoken
in an urgent tone, "Can you give me a ride home?"

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397
APPENDIX A
LOVE STORY BY MARJORIE T. BLACKEN

IWritten By Marjorie Timrner 'BCa.cken
400
3~ler father - the. Xing - had many enemies

and he couCdnot aCCbw her to Be in danger. She
was watched at aCC times. She was not aCCowed
out of the tower without many guards. She onCy
saw the sun andwoodCands through her window.
She had nop Caymates and was very ConeCy and
unhappy.
One day sfie sCipped through tfie guards and
ran to tfie woods. Sfie wanted to be free.
It was a wfiofe new w&rQfto her. She. comM
im*^
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5^^
She sat on a fatten tree trunk and cried her

heart out. She had no one to Cove her and to hoCd
and treasure her Cike you and I have. ShefeCt
aCone But she reaCCy was not. \ery near was a
BeautifuQ Bright green frog. Me heard her soBBing
and his heart ached for her.
3 J r
4»
^Ss
a^Nfc, *
3~Le quietCy sdppedup on the Cog and inched a

CittCe cCoser- he did not want to frighten her. As
he got cCoser she saw him and thought he was the
most BeautifuCfrog in the worCd.
405
When he saw that she was not afraid, he

movedcCoser and gave her a soft, Coving kiss.
\
\ ^ttta
JA. wonderful thing happened. She Became a

BeautifuC, Bright green frog.
407
1he whoCe w orCd changed. She Cooked around

and saw many veCvet Brown eyes Cooking at her.
408
She heard CittCe noises in the under Brush and

as she sat quietCy and waited, the forest peopCe
sCowCy came cCoser. They were not afraid of her.
The deer with veCvet Brown eyes came cCose. Mr.
and Mrs. 'RaBBit Brought their CittCe famiCy out.
There were squirreCs and chipmunks and, By then,
the BCuejays, BCue Birds and finches were much
too curious to stay up in the trees.
When the CittCe princess, JFrederika, saw how
friendCy they were, she wanted to sing and dance.
No more crying. She. and her BeautifuCfrog Began
to sing and dance. JACCthe forest peopCe joined
them. Now she had friends. At Cast she was free
and Coved.
410
When the singing stopped, frederika heard a

whimpering and everyone was stiCC It was a CittCe
puppy - Cost and frightened
411
She drew cCose to him and Coved him as she

had never Been Coved, from then on it was a
wonderfuCworCdfor frederika. She and her
BeCovedfrog, francis, Civedso happiCy together
with freckCes - their puppy.
Of course it was not aCCsinging and dancing.
'There was work to be done.
Winter was coming and food had to be
gathered and stored. *Warm nests had to be made
to sheCter themfrom the fierce north wind.
lhey aCC worked togetherjust as they had
sung and danced together. frederika worked the
hardest. She was free and happy and Coved.
WouCd you rather be a happy, green frog
instead of a beautijuC, very sad princess?
IwouCd.
414
APPENDIX B
FIELD RESEARCH PROJECT: RESEARCH QUESTIONS AND
APPROVED APPLICATION FOR USE OF HUMAN PARTICIPANTS
415
Research Questions used in Unpublished Research Paper

" Journey into the World of Alzheimer V ' (2000)
Research Question: How do you have a meaningful relationship with and tend the
emotional and spiritual needs of a person diagnosed with Alzheimer's disease?
Interview Questions:
1. Through a story or anecdote can you describe what it is like to have a
relationship with an Alzheimer's patient?
2. How would you describe the symptoms, or landscape of Alzheimer's disease?
3. How would you describe the experience of memory loss—the quality or nature
of this loss and the impact on inner and outer life?
4. What are ways that you can tell when something has deep meaning for an
Alzheimer's patient?
5. Drawing on your experience, can you describe a time when you were aware
that an Alzheimer's patient was touched deeply:
• moved to tears or deep laughter
• deeply engaged in a creative act
• deeply moved by beauty in art, nature, music
• moved to express affection, kindness, anger or despair
6. Based on your observations, are there certain rituals that have meaning for an
Alzheimer's patient?
7. Based on your experience, are there ways that Alzheimer's patients seek or
ask for a deep emotional and/or spiritual connection (for example, do they use
certain actions, words or facial expressions)?
8. Have you noticed certain contexts or ways of communicating that allow deep
listening and a deep, rather than superficial, communication with an
Alzheimer's patient? What causes attention to wax or wane?
416
9. Have you read about (possibly in literature from other cultures or in personal
memoirs), or considered, different ways of viewing memory loss. For
example, is there meaning in the loss of memory beyond the meaning that it is
a symptom of aging and disease? Does loss of memory mean a state of leave-
taking or a state of being between two worlds of consciousness (dimensions of
reality)? Do any stories or thoughts come to your mind on this subject?
10. Does loss of memory mean a state of leave-taking or a state of being between
two worlds of consciousness (dimensions of reality)?
11. Do any stories or thoughts come to your mind on this subject?

417
Ethics Application
Application for Approval for Use of Human Participants
I Personal Information, Title, Sponsoring Organization and Contact Person

Researcher Kristin Cann Today's Date May 10, 2000
Full Address 309 LaVerne Ave . Mill Valley. CA 94941
Phone (day) (415)383-3083 Phone (eve) (415)383-3083
Title of ActivityParticipatory Research into Ways of Tending the Soul of People with
Alzheimer's Disease
Sponsoring Organization Pacificia Graduate Institute
Contact Person Mary Watkins or Aaron Kipnis
II Affix appropriate signature
I will conduct the study identified in the attached application If I decide to make any
changes in the procedures, or if a participant is injured, or if any problems arise that involve
risk or the possibility of risk to the participants or to others, including any adverse reaction to
the study, I will immediately report such occurrences or contemplated changes to the Ethics
Committee
Investigator Signature -K_x A *~XC~ . v^o.v\/^^ . Date S~~ - /a — o<?
I have read and approve this protocol, and I believe that the investigator is competent to
conduct the activity as described in this application
Fieldwork Advisor fo^, QJWICA^. JuJ> rul*~ Date f (/?/&£>
III Notice of Approval
The signature of the representative of the Ethics Committee, when affixed below, indicates
that the activity identified above and described in the attached pages has been approved with
the conditions and restrictions noted here
Restrictions and Conditions 1 K J>0V*l p. <&V iri <~ ib fluvrfrf cdj QU^t
_ lS»ux^<tc.£. *£ ygjagy^
Fieldwork Advisor $j C&IK**^ ^(jfaip Date fjl^OO

418
Brief description: This study will gather information and wisdom related to the question
of how to tend the soul of people with Alzheimer's disease. Part of the research will be
conducted through interviews with caretakers and through observation of and direct
experience in relationships with Alzheimer's patients. This study seeks to gather data on
how to relate on a deep level—listening deeply and making a connection that is more than
a superficial dialogue with an Alzheimer's patient. The study will look at such factors as
the context, the ways of communicating, and the ways of recognizing a deep connection
with people diagnosed with Alzheimer's.
1. PARTICIPANTS: Describe the participant population and how it will be obtained.

Who will participate and how will you find/select them?
I will interview five to ten staff members, five to ten caregivers and five to ten
family members of the ten residents of an Alzheimer's wing in a residential home for
the elderly. 1 will also be observing interactions with the Alzheimer's residents by
participating with the staff and caregivers in caring for these patients. This Alzheimer's
wing was selected because my mother is one of the resident patients. I also plan to
interview two to four members of a local Alzheimer's support group.
2. PROCEDURES: From the participant's point of view, describe how you will
involve them in your study. How will you conduct your study?
After an initial contact, either in person or by telephone, in which I explain the

project and receive the participant's agreement to be interviewed, I will deliver an
envelope to each participant containing an explanation of the research study, an informed
consent form, a brief questionnaire, and a list of interview questions. The participants
will have time to consider the questions and fill out the questionnaire and will then meet
with me at the agreed upon time and place for a 30 to 60 minute taped interview At the
end of this interview, the participant and I will decide upon a time and place for a follow-
up interview, and a format (time and method) for me to share the results of the study. The
participants will be assured at each phase of their participation that confidentiality will be
maintained.
3. CONSENT: Describe procedures for how and when you will receive informed
consent from your participants.
A copy of the attached informed consent form will be enclosed in the envelope
delivered to each participant before the interview, and a signed copy of this consent
form will be collected from the participant before the interview commences.
4. RISKS: Describe and assess any potential risks and the likelihood and
seriousness of such risks. How might participants be harmed during or after their
participation in the study?
A potential risk exists that the interview may elicit guilt, sadness, frustration or
discouragement from those in relationship with an Alzheimer's patient. Also there
is a risk that family members may experience the request for an interview as a
burden because of an already full schedule, and staff and caregivers may be
reluctant to be open about negative feelings with me because my mother is one of
the Alzheimer patients in their care.
5. SAFEGUARDS: Describe procedures for protecting and/or minimizing the

potential risks (including breaches in confidentiality) and assess their likely
effectiveness. Given the risks, how will you prevent them from occurring?
Participants will be assured of confidentiality and an effort will be made to form a

rapport and alliance with staff, caregivers and family members in the common causes
of creating a caring community, and sharing knowledge which contributes to
understanding and tending the needs of Alzheimer's patients. The goals of sharing
information and expertise, maintaining good communication and mutual support, and
contributing to the general knowledge of caring for Alzheimer's patients will be
stressed before, during and after the interviews. I will plan to be available for 30
minutes after each interview in order to help process any intense feelings stirred
during the interview, and will provide availability by telephone if the interviewee
should have further needs to process feelings or clarify concerns. Also, I plan to get
permission to work with caregivers for several shifts in the Alzheimer's facility as a
way of better understanding the needs and ways of relating to Alzheimer's patients.
Hopefully this work will not only help me understand the patients better, but will also
build rapport with the caregivers as a way of mitigating concerns they may have
about discussing negative feelings and challenges of caring for Alzheimer's patients.
6. BENEFITS: Describe the benefits to be gained by the individual participants

and/or society as a result of the study you have planned. What good will come of
this research?
The potential benefits for the participants and for society are an increased
understanding of how to tend the emotional and spiritual needs of Alzheimer patients,
an increased sense of community among the family, caregivers and residents of this
particular Alzheimer's facility, and a deepening of relationships with these particular
Alzheimer patients. This deepening of relationship could result in increased
professional fulfillment and personal enrichment for staff and caregivers, and a
deeper, more meaningful relationship between family members and an Alzheimer's
patient.
420
7. POSTEXPERIMENT INTERVIEW: Describe the contents of your

conversation with people in the study after their participation is completed.
How will you inform them of the study's purpose?
The purpose of the study will be described during the initial contact with
prospective participants, and also in a letter explaining the study, which will be
delivered before the interview. Arrangements will be made at the conclusion of the
interview for a follow-up interview which will allow the participants an opportunity
to process feelings stirred during the interview, to clarify questions or concerns and to
share their experience of the interview process. This follow-up interview will allow
me to assess for any negative outcomes from the interview process, to offer time to
address and process these issues, and to dialogue with the participant on the subject
of tending the emotional and spiritual needs of Alzheimer's patients.
421
APPENDIX C
LETTER FROM ANN CASON DATED JULY 9, 2002

422
^ < \ i ,v1 I i \ i ! ',
Y \\<Y
July 9, 2002
Dear Kris,
So nice to see you and your sweet, elegant mother. Anne Pera and I both felt that
we had met kindred spirits.
Anne and I have been reflecting upon and discussing ways of supporting
both you and your mother within thefinancial,emotional and atmospheric context that
you have described so well.
First, I want to reiterate that the length of your mother's life is uncertain. If she is
suffering from end stage Alzheimer's, the concern is not so much about the length of her
life, but of the quality. There is a tendency for mind and body to get so disconnected that
a person can live on in a state neither here nor there for a long period of time. The
following suggestions have to do with helping your mother "Be" in her body in the best
way possible. Sometimes it is necessary to help an elder wake up so she can remember to
die - to finish up this life and to take afreshstart.
1 liked the flHMHBB* It has the feel of an elegant, old European hotel. Your
mother's room is light and spacious. I don't think it needs much except possibly fresh
flowers and maybe some splash of color across from her chest of drawers.
The questions I ask are these: starting with this attractive environment, how can it
be strengthened? Since so much of your mother's care is resting with you - How can we
support you?
Let's look at your mother's daily schedule to see what is there, what is working,
and where there might be a gap. I use writing out the daily schedule as a contemplative
tool, much as I did in my book. I might have some of the details wrong, but you could do
this exercise and fill it in accurately.
7:00 - 8:00 Gets up, eats breakfast, takes medication Assisted living staff
8:00 - 10:00 Resting and personal care Assisted living staff
10:00 - 12:00 Sitting in the family room with others

12:00 - 1.00 Eating lunch and sitting with others in dining room Assisted living
staff
1:00-3:00 Napping
3:00 - 4:30 Getting changed and having socialization
4:30 - 5:30 supper
5:30 -6:30 Evening care and silting quietly
7:00 Take evening medication;
7:00 8:00 Evening activity and preparing for bed
8:00 Bedtime medication and going to sleep
I realize this is a little spare, but I'm sure you could fill in more. However, when
I look at the schedule, 1 think that the afternoon presents the most need and best
opportunity for socialization. I don't know if any activities are provided by ( • • §
• M l If so, it would be good to take advantage of them. However, if they are not
provided, this is opportunity for you as well. Maybe you could provide a tea party or a
wine party or music party a few days a week. If you can't findfriendsor family who are
willing to come with you, you could probably entice one of your mother's neighbors
into her room for a cookie and lemonade. Or perhaps you could serve a drink of apple
juice and listen to a tape out in the family room. Sounds like there is already some
camaraderie in the t.v. room with staff watching the t.v. as well as the elders. Maybe
you could slip the staff some pop corn even though they probably aren't supposed to be
there- (popcorn for the staff and root beer for the elders) You get the idea. As we talked
about yesterday, a guitar player would be nice. Someone who could just strum or sing a
couple of songs followed by a cookie and juice or something hospitable. Did 1 mention
the Threshold Choir which sings for birth and deaths? They are terrific.
Also, it might be nice, once a week to have an aide come who could help you take
your mother out. Anne and I were so impressed and so touched that you had pushed
Marjorie all the way to H H l m that wheel chair. However, we agreed that we
would not wish to see you do it again. She needs a better wheel chair if possible, at least
for long trips. Taking her out is good, but in my way of thinking a helper is essential.
We would be happy to assist you with activities to give you a boost and vision of
celebration. Also, you might want to be supported by Anne Pera or myselffromtime to
time, just to talk and get a shot of inspiration.
I'm enclosing a copy of our prices. Hopefully, we are giving you a practical
vision of how to go about care that will be very cost effective, bothfinanciallyand
emotionally. Again, it was so nice to meet you and I hope we can work together, more.
424
APPENDIX D
COMMUNION UNDER SPECIAL CIRCUMSTANCES

Communion under Special
Circumstances
Collect of the Pay
or-
Gracious God, whose dear Son, on the night before he
suffered, instituted the Sacrament of his Body and Blood:
Mercifully grant that we may receive it thankfully in
remembrance of Jesus Christ our Lord, who in these holy
mysteries gives us a pledge of eternal life; and who lives and
reigns for ever and ever. AMEN*
The Gospel of the Dav

or-
Jesus said: "Live on in me, as I do in you. Just as a branch
cannot bear fruit of itself apart from the vine, neither can you
bear fruit apart from me* I am the vine ; you are the branches.
Those who live in me and 1 in them will bear abundant fruit.
(John 15: 4-5)
Confession of Sin (said together)

Most merciful God> we confess that we have sinned against you in
thoughty word and deed, by what we have done, and by what we
have left undone. We have not loved you with our whole heart; we
have not loved our neighbors as ourselves. We are truly sorry and we
humbly repent. For the sake of your Son Jesus Christy have mercy on
us and forgive us that we may delight in your willy and walk in your
ways, to the glory of your Name. AMEN*
The Priest alone says:

Almighty God have mercy on you, forgive you all your sins
through our Lord Jesus Christ, strengthen you in all goodness,
and by the power of your Holy Spirit keep you in eternal life.
AMEN.
The Lord's Prayer

The Administration of the Sacrament
Prayers of healing and anointing: (Optional)
In the name of God I/we lay our hands upon you.
Receive Christ's healing touch to make you whole in
body, mind and spirit- The power of God dwell in you
and give you peace. AMEN*
N. I anoint you with this holy oil. Receive Christ's

Grace and healing.. The power of Jesus who suffered for
you flow through your mind and body, lifting you to
peace and inward strength. AMEN,
God, our healer, keep us aware of your presence,

support us with your power, comfort us with your
protection, give us strength and establish us in your
peace* AMEN*
Closing Prayer (said together):

Gracious God> we give you praise and thanks for this Holy
Communion of the Body and Blood of your beloved Son Jesus Christ,
the pledge of our redemption] and we pray that it may bring us
forgiveness of oursim, strength in our weakness, and everlasting
salvation; through Jesus Christ our Lord. AMEN*
427
APPENDIX E
PREPARING FAMILY FOR THE DEATH OF A LOVED ONE"

Preparing Family for the Death of a Loved One
Healing Ministry- - May/June 1996
(Information provided by the Neighborhood Visiting Nurse Association of West Chester Pennsylvania)
When a person enters the final stage of the dying process, two different dynamics are at
work which are closely interrelated and interdependent On the physical plane, the body
begins the final process of shutting down, which will end when all the physical systems
cease to function Usually, this is an orderly and undramatic series of physical changes
which are not medical emergencies requiring invasive interventions These physical
changes are a normal, natural way in which the body prepares itself tto stop, and the
most appropriate kinds of responses are comfort-enhancing measures
The other dynamic of the dying process is at work on the emotional-spintual-mental

plane The "spirit" of the dying person begins the final process of release from the body,
its immediate environment, and all attachments This release also tends to follow its
own priorities, which may include a resolution of whatever is unfinished of a practical
nature and reception of permission to "let go" from those gathered These "events" are
the normal, natural way in which the spirit prepares to move from this existence into the
next dimension of life The most appropriate kinds of responses to the emotional-
spintual-mental changes are those which support and encourage this release and
transition
When a person's body is ready and wanting to stop, but the person is still unresolved or
unreconciled over some important issue, or with some significant relationship, s/he may
tend to linger, even though uncomfortable or debilitated, in order to finish whatever
needs finishing On the other hand, when a person is emotionally-spintually-mentally
resolved and ready for this process, the person will continue to live until the physical
shut down is completed
The experience we call death occurs when the body completes its natural process of
shutting down and the "spirit' completes its natural process of reconciling and finishing
These two processes need to happen in a way appropriate and unique to the values,
beliefs, and life-style of the terminally ill person
Therefore, as families seek to prepare themselves as this event approaches, spiritual

counselors can let them know what to expect and how to respond in ways that will help
the loved one accomplish this transition with support, understanding and ease This is
the great gift of love to be offered a loved one as the moment of death approaches
The physical and emotional-spintual-mental signs and symptoms of impending death

which follow are offered to help, with understanding, the natural kinds of things which
may happen and how to respond appropriately Not all these signs and symptoms will
occur in this particular sequence Each person is unique and needs to do things in
his/her own way This is not the time to try to impose change, but the time to give full
acceptance support and comfort
The following signs and symptoms describe how the body prepares itself for the final
stage of life
Urine decrease
The person's urine output normally decreases and may become tea-colored - - referred
to as concentrated urine. This is due to the decreased fluid intake, as well as decreased
circulation through the kidneys, and fluid loss in breathing and respiration. A nurse can
determine if there is a need to insert or irrigate a catheter.
Incontinence
The person may lose control of urine and/or bowels as the muscles in that area begin to
relax. Protective measures should be taken to keep the patient clean and comfortable.
Breathing pattern change
The person's regular breathing pattern may change with the onset of a different
breathing pace. A particular pattern consists of breathing irregularly with shallow
respirations, or periods of no breaths for five to thirty seconds, followed by a deep
breath. The person may also have periods of rapid, shallow, panting type breathing.
Sometimes there is a moaning-like sound on exhale: this is not distress, but rather the
sound of air passing over relaxed vocal cords. These patterns are very common, and
indicate a decreased circulation in the internal organs. Elevating the head, and/or
turning onto the side may bring comfort. Hold their hand. Speak gently and
reassuringly.
Congestion
The person may develop gurgling sounds coming from the chest like a percolator.
Sometimes these sounds become very loud and they can be very distressing to hear.
Watch your loved one closely and note that they are usually unaware of their bodily
processes. It is probably harder for you to watch than it is on the patient. Raise the
head of the bed so the secretions pool low and, therefore, they don't stimulate the gag
reflex. Elevating the head, and/or turning onto the side may bring comfort. Hold their
hand. Speak gently and reassuringly.
Color changes
The person's arms and legs may become cold, hot, or discolored. The underside of the
body may become discolored as circulation decreases. This is a normal indication that
the circulation is conserving to the core to support the most vital organs. Irregular
temperatures can be the result of the brain sending unclear messages. Keep the patient
warm if they appear cold, but do not use an electric blanket. If the person continually
removes the covers, then allow them just a light sheet.
Permission to go
Families giving permission to a loved one to let go without making him/her feel guilty for
leaving or trying to keep him/her with that family to meet its own needs can be difficult.
A dying person will commonly try to hold on, even though it brings prolonged discomfort,
in order to be assured that those left behind will be all right. A family's ability to reassure
and release the dying person from this concern is the greatest gift of love they can give
at this time.
3
430
APPENDIX G
PAINTINGS - DEPICTION OF A DESCENT TO THE UNDERWORLD

431
433
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LOOKING AT ALZHEIMER'S DISEASE FROM A DEPTH PSYCHOLOGICAL

PACIFICA GRADUATE INSTITUTE

This dissertation has been

Elizabeth Nelsan, PhD

Cecile Carson, MDc

All rights reserved

INFORMATION TO ALL USERS

Looking at Alzheimer's Disease from a Depth Psychological Perspective

Kristin Blacken Cann

A resident in an Alzheimer's facility greets you with a question spoken in an

This dissertation records research into the depths of the phenomenon of

heuristic method of looking at personal experience and the experience of others to

stage Alzheimer's disease. The hermeneutic method, informed by archetypal

psychology, was used to interpret the data of the narratives.

the process—perceiving it as a descent into the underworld—inner depths. This shift

allowed the caregiver to understand symptoms as cryptic messages about inner

experience, which enabled better communication and care. The underworld

Persephone's eye at symptoms such as pleading eyes and agitated behavior.

caregiving experience, and was moved by these experiences. The researcher

sufferer, and a deeper understanding of Alzheimer's disease. Using an archetypal

lens, surrender to the depths was interpreted as an enactment of Persephone's shift

meaningful in the researcher's personal life.

underworld dimension inherent in the symptoms of Alzheimer's disease. The

underworld became a source of guidance in responding to symptoms. Treatment

This work is dedicated to

with love and gratitude.

It is also dedicated to the memory of my mother, who taught me to value the

Alzheimer's disease into death.

1 year of coursework, my mother drew me into her journey through Alzheimer's

disease. My work at Pacifica enabled me to see Alzheimer's disease from a depth

perspective and to participate in the sacred dimension of caregiving.

During this journey my mother and I were fortunate to encounter many

exceptional love and care they provided for Joey.

voice who balanced pushing me to do my best with allowing me to develop my way

me to go deeper into myself during the process of reflecting on my research.

Elizabeth Nelson, as coordinator of my committee, provided the counsel of a

professional author in guiding the dissertation process, and provided a careful

reading, discerning questions, and a sensitive response to my work.

sponsoring supported my passage through the inner depths of this work.

Finally, I want to thank my family from the bottom of my heart. I am grateful

CHAPTER 1 INTRODUCTORY REMARKS, LITERATURE REVIEW,

STATEMENT OF THE PROBLEM, AND RESEARCH QUESTIONS 1

Medical View of Alzheimer's Disease 15

Current Assessment and Treatment 16

Emerging Trends in the Medical Definition of Treatment 20

Evolution of the Medical View in the Context of Western Culture 26

Cultural View of Alzheimer's Disease 30

Current Methods of Diagnosis, Assessment, and Treatment of

Survey of Descriptions of the Alzheimer's Experience Written by

Survey of Accounts of the Experience of Caregiving for a Loved One

Survey of the Experiences of Professional Caregivers 78

Caregiving in the Final Stage of Alzheimer's Disease 90

Current Psychological Assessment and Treatment 107

Freud's Theory and Its Relevance to Treatment of Alzheimer's

Definition of the unconscious 112

Relationship between body and mind 114

Use of myth 116

View of death 117

Jung's Theory and Its Relevance to Treatment of Alzheimer's Disease 118

Definition of the unconscious 118

Use of myth 121

Relationship between body and mind 124

View of death 126