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My mother died early last year, after more than a decade of living with dementia. She weathered it gracefully, as she did most things in life. But the gift she gave me along this journey together, especially at the end, is what makes me so proud to be her daughter and has left me without remorse and only deep appreciation.
We all live and we all die. That is a certainty. But what isn’t so certain is that we will have the freedom to make decisions about our quality of life until the end.
I first took on the role of power of attorney for both of my parents' physical care eight years ago, when my father, who was my mother’s primary caregiver, a role necessary due to her dementia, was hospitalized for 10 weeks.
My father was very ill, and the hospital health team told us he wouldn’t be able to return home. We needed to look for spots in a retirement home for both of our parents. My siblings and I immediately started to think about getting our childhood home ready for an inevitable sale and making provisions to move my parents from their home in Burlington, Ont., to a retirement home two-and-a-half hours away, in my town of Owen Sound, Ont., where I could keep an eye on them. But before we could do anything, without any warning, my father discharged himself from the hospital, very weak and frail physically, but resolute and firm in his decision to stay in his own home. So set was his resolve that, though he loved his children unreservedly, he threatened to call his lawyers to thwart our attempts to uproot him and our mother. We were in that moment his enemy. We did the only thing we thought we could: We backed away and left them alone.
With the strangest of serendipitous timing, a bioethicist spoke at my workplace about the role of a POA during this same time period. He explained that the role is not to act on what you feel is good for that person, but to act as they would if they were able to make those decisions themselves, a subtle but important distinction. It helped me feel better about not forcing my father to do what I wanted and allowed me to view him with more understanding and ultimately more respect.
Unexpectedly, after just a few days at home, my dad saw the wisdom of moving to the retirement residence after all. I hoped he and my mom would decide to stay there, but after recuperating for six weeks, they returned to their home. To all our surprise, they stayed there for another two years.
At that point, he started to suffer from mini strokes. This time, we knew, we needed to find out exactly what he wanted us to do about his declining health. His wishes were clear and specific. He said he did not want to go to the hospital at any cost, though upon further questioning we were able to gain more clarity on that point. For instance, if he were to have one of his strokes, he wanted to be left to lie on the couch with a teaspoon of honey. This is not what I would want to do in that situation, but it was his choice. On the other hand, if he were to fall and break a bone, then he would willingly go. With clear direction, we were able to follow his wishes, offering him the respect that comes with being loved, valued and heard. Three weeks later, he passed away.
After my father died, decisions regarding my mother’s care fell mainly to me. People with dementia eventually become incapable of caring for themselves in ways that are safe and healthy. I wanted to make sure she was both of those things, but I also looked for signs that she was still enjoying herself. My goal wasn’t to put her in bubble wrap, keeping her alive but away from life’s pleasures. She couldn’t articulate her wishes the way my dad did, but if I watched and listened with openness and receptivity, she was loud and clear. When she moved into a new long-term care home, I paid attention. I saw her not only settle into the facility, I saw her thrive. She showed me she was happy.
In her last year of life, she slowed down. Initially, I would play board games with her, trying to draw out the joie de vivre I had seen before. She would humour me for a while, then just tune out. But I understood that my mom was comfortable, which became my main focus. I resisted the impulse to cajole her or assert more intervention to engage her. I realized she was naturally receding from life. I recall more than a few times sitting with her, watching cars go by, when she would turn to me and shrug her shoulders, as if to say, “Is that all there is? Now what?”
Her “now what” sentiment became more apparent. She didn’t look depressed or anxious, but she did look resolved. Eventually, she wasn’t eating or drinking much. I resisted the urge to send her to the hospital to get rehydrated, an option that was suggested to me. I didn’t try to push her to eat either. She conveyed my efforts would be in vain anyway when she declined ice cream, a food she previously devoured in large quantities. Instead she just said, you have it.
That was her gift to me. Not the ice cream, but the clarity of her decision, even in her dementia, that she was ready to go. I knew she loved me, and I loved her enough to really listen to her. She slipped away peacefully, in her own time, in her own way. And I let her.
Sheilah Spurr lives in Owen Sound, Ont.