Caregiving Insights: Lessons Learned

CHAPTER ONE

LIFE ON THE RECEIVING END

LINA MIRANDA

Knowing life on the other side of caregiving, or anything else, is impossible, but Lina Miranda bravely shares insights of what it was like for her after her cancer diagnosis at the age of twenty-one. The wishes and hopes of a person during this stricken stage may not be possible, but learning from Lina is.

People often say it’s those left behind by the loss of a loved one who suffer the most. While there is truth in this belief, caregivers can suffer intensely while taking care of a loved one. The strain a caregiver endures — emotionally, physically, and mentally — is heavy and consuming. Being a caregiver can be a tremendously difficult role. As a caregiver, you may be left questioning whether you are doing too much or too little. Are you talking too much? Not listening enough? Asking too many questions? Hovering? Not present enough? Having to adapt to the mood or needs of the care recipient from day to day can, at times, feel like watching the ball at a roulette table; you never know where it’s going to land. Taking on this role, or in some cases being forced into this role, is like stepping onto a rollercoaster ride with inevitable ups and downs. Feelings of anger, frustration, exhaustion, and hopelessness are common and to be expected. I would imagine that many caregivers at times throughout their journeys feel like they are walking on eggshells, always trying to be exactly what their loved one needs without being able to express their own feelings out of fear of upsetting their care recipient.

I have been on the other side of the equation. Having been a care recipient, I can provide perspective on how to best be a caregiver through the lens of a care receiver, in my case, as a cancer patient. There were a number of things that my caregivers did well and for which I will forever be grateful. But there were also things I wish they’d done differently. There are two things in particular I really wish my caregivers had done that none of them did. I didn’t know at the time that I needed these two things, but now, eighteen years later, after years of thought, I realize they are essential for all caregiving situations.

My journey as a care recipient started at a time in my life when my best friend and I were planning a backpacking trip. I was twenty-one, getting ready to go on this amazing trip to spend the summer in Europe with my friend, when one day my dad said, Lina this doctor keeps calling for you.

I thought, That’s strange, but if he’s not leaving a message, it mustn’t be that important. He’ll just have to catch me when I get back! A few days later, I was home when he called. I picked up the phone, and the first thing he said to me was, Lina are you sitting down? I remember thinking, This is not good. He said, We found a tumour. It’s big, and we will need to work fast. As I hung up the phone, I just sat on my bed looking at my backpack, thinking, This is serious. Not only am I not going to Europe, but I might die.

My symptoms started when I was eighteen. I was in my first year of university when I told my family physician about my heartburn. He chalked it up to anxiety and said it was fairly typical for new students. But as the year went on, my symptoms became more of a constant, rather than episodic pain. In follow-up visits, he continued to insist that my pain was stress-induced. A few months after another unsuccessful visit with my doctor, I ended up in the emergency room with severe heartburn that took my breath away. It felt as though someone had poured gasoline down my throat and lit a match in my stomach. At the ER, I was given morphine for my pain and after a night of observation was sent home. It was after this ER visit that my family doctor thought there was potentially something else going on other than stress. I was tested for H. pylori, bacteria that causes stomach ulcers. Not surprisingly, I tested positive for the bacteria and was put on an antibiotic regime to treat it.

Unfortunately, as time went by, my symptoms worsened. I ended up back in ER a few months after my first visit. I was again given morphine by intravenous for the pain, observed overnight, and then discharged the next morning.

After almost two years of suffering from severe and almost constant heartburn, I decided to take matters into my own hands and do some research. My investigation led me to request a scope of my stomach. My doctor thought I was being overly concerned but agreed to follow my wishes and put me on a waiting list for a gastrointestinal scope. However, due to my young age, it would be a long wait. Many painful days and nights went by, and once again I ended up back at the ER. I was embarrassed by the fact that it was my third time to the ER with the same symptoms. But this particular visit was different; the ER doctor was concerned by my frequent visits and worried I might have a perforated ulcer. It was the only explanation he could think of for the extreme pain. He admitted me as an inpatient so I could have my scope done the next day. The following morning, I met the gastroenterologist, who asked me if I drank a lot of cola or took a lot of ibuprofen, or if I had noticed any blood in my stool — a resounding no to all. I sensed his hesitation to do the scope, but thankfully, he did it.

It was later that week that I received the life-changing phone call from the doctor. By this time, I was finishing my second year of university, living at home with my parents and older sister, who was engaged. My two brothers were already married and not living at home any more. I had a boyfriend of four years, a best friend, and a circle of good friends. And I was being told that a four-centimetre tumour had been found in the lower back portion of my stomach and that it was malignant. While my cancer was discovered in a late stage, the diagnosis was a miracle. I most definitely would not be here today to share my perspective on caregiving if it weren’t for one dedicated ER doctor who believed there was more going on with me beyond the mere stress of being a young university student.

At the age of twenty-one, I was diagnosed with stomach cancer. I was scheduled for surgery two weeks later. It was hard for me to grasp what was happening. I went from being a vibrant young woman who enjoyed school, worked as a waitress, and loved all the things that young adults love doing — dancing all night at clubs, hanging out in coffee shops talking to girlfriends about postgraduate plans, living a life that I was not at all ready to be tossed — to a cancer patient, almost overnight.

While I had a large circle of support, there were many moments throughout my journey when I felt utterly alone. My hope is that in sharing my story, I can help others understand the emotional and mental state of a patient. Throughout the various stages, I felt alone, despite having so many people around me. Often, on the surface situations may appear stable, but underneath lies a different beast; a caregiver may not know exactly how their loved one is truly feeling.

When I was first diagnosed, I didn’t fully grasp what had happened. Denial protects us for a bit, so it was as though I was living in some sort of altered state. I knew I had cancer because I was told I had it, but I did not yet feel like a patient, and physically I still looked and felt the same. I suppose the same was true for my caregivers; they knew that their loved one, daughter, sibling, friend had cancer, but the reality and the gravity of the situation took a while to fully sink in … for all of us.

BRING AN ADVOCATE

In the first few weeks leading up to the surgery, my family was always close by and accompanied me to many doctor’s appointments and preop visits. This was valuable to me because as the patient I would tend to tune out what was being said. There was too much information being thrown at me all at once, so it was very important to have others at my appointments, not only for the emotional support but also for the mental support to ensure that of all the information was captured and understood and that the right questions were being asked and answered.

SHOW COMPASSION, NOT PITY

One of the most difficult aspects of being a cancer patient was dealing with the stigmas that are attached to cancer. As soon as anyone hears the C-word, people act differently. Tones of voice change, facial expressions are sympathetic, people just react differently to you when they find out you have cancer. For this reason, especially in the beginning, the care recipient may not be ready to accept the fact that they are sick and need help. They may want to hang on to whatever independence they have until they absolutely can’t. I was not ready to feel vulnerable and accept the help of others because in my mind I did not need the help yet. I still felt fine. As a caregiver, this can be a tricky road to navigate, but I do believe that you should try your best to insert yourself into the care recipient’s appointments and be there for them without overdoing it and becoming a helicopter caregiver right off the bat. Your loved one will thank you for it afterward.

Also, understand that while they may say they are okay, they are internalizing out of necessity and need time to accept the changes that are happening. Try to remember that they are facing the fact that the future they had envisioned for themselves has at the least been put on hold and may never become a reality. As a newly diagnosed cancer patient, I was grieving the loss of the plans I had set out. The backpacking trip I was planning to go on the month after my diagnosis — plane tickets bought and hostels booked — all needed to be cancelled. I was grieving the loss of my third year of university. I was grieving the loss of possibly getting married and having children. My whole future was in question. Would I be alive to see any of it?

The day of my surgery felt like a sequel to the movie My Big Fat Greek Wedding, only we were mostly Portuguese and there was nothing to be celebrating that morning. It was just a big, messy family event. I rolled into the surgical check-in section with my entourage of close to twenty people. There were my parents, siblings, their partners, my boyfriend, my boyfriend’s parents, and my friends. It really was quite the funny spectacle, if it wasn’t so heartbreaking. I have to admit, as crazy as we must have looked to others, within this massive group of people I felt encircled in love, and I felt safe. I knew that in about ten hours, once I woke up, my life would be forever changed. It was comforting to know that at least the people around me, my loved ones, would still be there, and that was not changing.

The days after surgery were very painful and foggy, but my immediate family was there, and just their presence in the room brought a deep sense of comfort.

REMEMBER, GESTURES SMALL GO A LONG WAY

On the day after surgery, my sister came in to visit with some gifts. She had gone out and bought a couple of kerchiefs. Without even knowing what my staging was or if I would need to undergo chemo, she bought the kerchiefs and we wore them preemptively together all day. She said that no matter what I was going to have to go through, she would be there with me. This small gesture of solidarity spoke louder than words. While neither she nor anyone else understood what I was going through, she was showing me that she was there by my side and ready to lend the support I was going to need.

LEAN IN CLOSER WHEN IT GOES FROM BAD TO WORSE

A few days after my surgery, my surgeon came in to deliver the pathology results and the news of my staging. It was on that day that my life officially changed. I went from a young woman who just had seventy-five percent of her stomach removed but was still hopeful for her future to a young woman who had just had most of her stomach removed and was now being told that she might not even have a future. I was diagnosed with Stage 3b stomach cancer and was given a five-year survival rate of fifteen to twenty percent. I would need to undergo six months of chemotherapy and twenty-five consecutive days of radiation.

This news was beyond devastating for me and my caregivers. How were my loved ones supposed to act around me now? Were they supposed to stay optimistic and say that everything would be all right? Or were they supposed to cry and show me the fear that they were most definitely feeling? And how was I supposed to act? Everyone, at least on the surface, remained positive and never shared how they might have truly been feeling. Perhaps it was for this reason that I never shared with them how I was really feeling.

My first few weeks at home were physically very difficult. I had a lot of trouble just sitting up and walking. Having been cut right down the centre of my abdomen made a lot of everyday tasks very difficult. For a few weeks, I slept in my sister’s bed with her. I told everyone it was because I might need help getting up in the middle of the night to go to the bathroom, but the truth was I was afraid of being alone because I was afraid of dying. I’m so grateful she leaned in and didn’t