“Egwene clung to Rand’s arm for two more bridges. He regretted it when she finally let go with a murmured apology and a forced laugh, and not just because it had felt good having her hold onto him that way. It was easier to be brave, he discovered, when someone needed your protection.“

~ from Eye of The World by Robert Jordan.

In the summer of 2017, I was faced with a challenge that daunted me. My only surviving parent, my father, was diagnosed with late-stage kidney disease, and I was in position to care for him. I had two choices: I could be there for my father or I could allow him to go into the care of a nurses and PSWs and, eventually, go into a nursing home.

I was single, with no dependents, on (permanent) leave from my PhD and not working, and was living under his roof. I had spent twelve of the last twenty years living with my father. My mother died in 1994, and my father and I leaned on each other. I moved home in 1998 after he underwent a triple-bypass and suffered a post-op stroke. I helped him through daily rehab, and he eventually recovered 90% of his functioning. The doctor even restored his ability to drive. In 2001, my alcoholism led me to hit bottom, and I went into treatment. I remained living with my father for the next ten years before moving to another province to study a PhD. I left then returned home again in November 2015, after having withdrawn from my academic program as well as having left my recovery group for over a year. My father was now turning 91, and I know he appreciated having me to help out around the house and yard.

Within a three month period, from April to August of 2017, my father’s renal functioning had dropped from 20% to 12%. His kidneys were on the road to shutting down. He was referred by his specialist to a group at the hospital which was dedicated to serving patients with kidney disease. It was at around this point in time when I’d realized I was making the transition from ‘middle-aged son who lives at home and makes meals, cleans, and tends the yard’ to ‘caregiver for a dying parent’.

I honestly didn’t think I could care for my father. I was alone, without friends, without community, and three years from having left recovery and my peer-support groups. I was drinking alone, sporadically, while controlling it ‘white-knuckle’ style. I was clearly not in the best mental health condition, and yet life was asking me to step-up and be there for a dying parent. I felt duty-bound to accept. I also believed that I should not overthink the decision. I had a very strong urge to flee the situation, but I knew in my gut that to do so would be my own final undoing—I would not be able to live with myself. So, even though I was full of self-doubt and fear, I chose to do whatever would be required of me to care for my father. As it turned out, this was the best decision I had ever made in my life.

My father declined dialysis treatment, for he didn’t want to spend most of his remaining days sitting in the hemodialysis ward getting his blood recycled and then hours at home recovering from the process. This would mean that his kidneys would continue to lose their capacity.

If I had any gap in knowledge concerning the purpose of the human kidney, it was quickly resolved. During my previous 55 years, I didn’t really give much thought to the kidneys. I knew they had some sort of connection to the bladder, that you didn’t want to get punched in their vicinity, that there was a bean named after them because of its shape, and that was about it. My role as caregiver to a kidney patient demanded that I turn my academic training toward learning everything about renal function and dysfunction, types of dialysis, the impact of kidney disease, and managing and mitigating the symptoms of late-stage renal disease and its impacts on other systems in the body (hemoglobin production, blood pressure, blood filtering, etc.). Over the course of the next 19 months, I performed my duty as my father’s caregiver night and day, everyday, with some respite from visiting nurses and my eldest sister.

My father was a very kind, considerate, and generous person. He was easy to care for and never acted toward me with aggression or anger. He was also very fortunate to maintain cognitive acuity throughout his decline. As he often told the doctors and nurses when asked how he was feeling, “I’m doing great from the neck, up. All my problems are below the neckline.” The principles of dignity and respect were very important to him. He was a quietly proud man who accepted his fate with grace. He was not inclined to complain, so I had to learn how to read his body language. Eventually, he became more willing to verbalize his needs to me.

He always thanked me for my assistance. And that meant many times a day. I often replied, “It’s a labour of love, and there’s so much love it’s not even labour.” That’s how I truly felt. I became more and more comfortable with the increasing demand on caregiving that I changed through this process. It rapidly went to full-time care and this lasted for a year and a half.

On February 14^th of 2019, I was in the basement and heard him fall, hard, on the bathroom floor directly over my head. Heart in my throat, I ran upstairs and found him lying in a pool of blood and called 9-1-1. He was transported to the hospital, and given a transfusion because he was anemic. He was admitted and remained in the hospital for a few days. Our kidneys are needed to produce red blood cells and regulate blood pressure, and if they are too damaged to meet our body’s needs, we become anemic and hypertensive which can cause fainting. The only treatment is continued and constant transfusion, which is not realistic.

He would now need a hospital bed in the house, since he would not be able to leave his bed. I took care of that, and he was brought home through the front door on a gurney then moved to the new bed in the living room. This was a very different situation from before his fall. A nurse was able to visit for a few hours at night so I could get some respite and sleep. I found I could not sleep well at all—I was too concerned about noises from the vicinity of my father. I was expecting him to pass on.

I had come to the point where I realized that I could not continue to care for him. I was emotionally, mentally, and physically spent. I broke down and cried when discussing this with Max, his regular nurse. I felt as though I was a coward or uncaring, and Max reassured me that to move my father to the palliative care centre for hospice was not only compassionate to him but also to myself.

Now in hospice, I was able to concentrate on every moment with my father without the distraction of tasks and duties required for his care. But kidneys were starting to shut down, he was losing his appetite and was on a morphine drip. Moments of clarity were becoming shorter in duration and arriving further apart.

My father served in the Royal Canadian Navy during World War II. I was at his bedside late one morning, and the sun was starting to come around to shine through the window of his room. Lunch was delivered, and because of his poor condition, he had no desire to eat, no appetite. So, I asked my father, “The sun must be past the yardarm now. How about a tot of rum?”

He replied, “Splice the main brace.”

I paused and asked him, “What did you say?” (I was concerned about his cognitive condition, knowing it was going to be the last thing to slip away from him.)

He waited for a moment, flinched in pain, then told me, “Whenever we had to splice the main brace, we’d get an extra ration of rum, so in the Navy it means a double ration of rum.”

On a subsequent day, he was nodding-off, and I gently put the palm of my hand on his chest. I had started doing this whenever I was with him.

He opened his eyes and said, “Oh…I thought that was Chester.”

Chester was his cat. When my father watched TV on the couch, Chester would often jump-up onto his lap and crawl up onto his chest and lie there, purring.

Later, my father was nodding off, and I put my hand softly on his chest, and he opened his eyes and asked, “What’s the score?”.

This was the last thing he said to me. I believe he imagined we were back in his home, watching a hockey game (of which we watched many together) and, once again, thought Chester had jumped up on him waking him from a nap. I like to think he closed his eyes then, returning to a peaceful nap with Chester purring on his chest until his heart stopped later that night.

It was months later when I realized that I had learned what love really means to me. Love is supporting another in their journey regardless of how I feel in any given moment. It’s being there without fail. It was a lesson I needed to learn.

I share this story out of compassion for anyone who might be faced with the decision of whether or not to care for a dying parent. We live in a culture in which adult children are expected to send their parents into nursing homes. The demands of work, the need for dual income, and their own family responsibilities leave no time, space, or energy for caring for parents. And I am the first to admit that I was in an unusually ideal position to care for my father. I was unemployed, unattached with no children to care for, and already living under his roof. But I hope that others might at least consider the possibility of another choice in their own lives.

The process of caring for my dying father transformed me and how I perceive myself in the world. Never in my life have I felt so sure I was doing the right thing. And this feeling remained with me for 19 months. I also felt as though the errors of my past were forgiven—whatever mistakes I made in life didn’t have the power to define me anymore. In fact, my experience of facing my own approaching death in addiction and surrendering to the process of recovery led me to landing back at home with my father in 2001. My dependence on him helped me to grow into the kind of person who was able to be there for him at the end.

To be my father’s caregiver gave me purpose in life, if only for a year and a half. After his passing, and after settling his affairs, I came to realize that I ended-up being the beneficiary of a great gift. That no matter how far down I get in life, I can always remind myself of the fact that I was there for my father when he needed me, and nothing can take that away from me.