My partner Patrick and I have had my mom here with us for a few days so that my sister, who does a marvelous job caring for her, can have a respite. She is 87 and suffers from dementia, and has done remarkably well so far. But she recently had a test where she scored 10 points lower on cognitive ability. So we all know she is declining.
This journey has had its measure of pain. And my long work in hospice care helps, but doesn’t extract me from the landscape of mourning we must all traverse. When my father died, she held him in disbelief sobbing, and begged God to take her too. He was the love of her life, after all. She was with me, my sister, brother and nephew, at the time, and the agony of loss was acute for all of us.
After that we began to notice her becoming more detached. She wound up in a wheelchair and eventually a nursing home for a brief stint. With much attention, especially from my sister, she was able to go from a wheelchair to a walker, and then back home. Eventually she was able to glean joy once again from life. Soon after, we moved her from Florida, which is where my parents retired, back home to Nova Scotia, the land where she was born.
She has had tremendous support here, was put on excellent medications, and was involved in a wonderful day program for people with dementia, which kept her socially and cognitively engaged. Unfortunately, they had to suspend this due to the pandemic. And the loss of that interaction has been marked.
There are moments now when she asks me: “you’re my son, right?” These lapses in memory don’t last long, and they aren’t very often, but the sharp stab of sorrow I feel in my chest is becoming too real for me to ignore now. And they are becoming more frequent with each passing day. After I shake off the grief, she is back to herself again, asking about my partner Patrick, whom she adores. Or her other son, George, who lives in the States. Or where my sister is. Or about her sister Marilyn, who also lives here in Nova Scotia. Or she talks about my father, and how much she still misses him.
There are other moments of irritation and exasperation that come with being asked the same question ten times in ten minutes. Or hearing the same story over and over again as if it were the first time she was telling it to you. This is the rocky territory of caregiving in the unforgiving land of Dementia. And then there are the conversations that were never finished, conflicts that were never resolved, and memories she can no longer grieve or celebrate with me. That, and the sleepless nights and guilt for all of those feelings. And I know this is only part of what my sister has experienced.
Despite that, we have found solace in the small things that make us spontaneously smile, like her colouring. She was never one to do any kind of art, now she loves colouring. And singing old hymns. “Great is Thy Faithfulness” is one of her favourites. And, after singing it with her for what seems like over one thousand times, it has become mine too. And watching travel shows. Every time she watches one with us she is so grateful, because she laments not having traveled the world the way she dreamed of when she was a kid. She somehow remembers that I’ve been lucky to travel a lot, and asks me for each country we see: “were you there, and were the people friendly?” And sitting by the bonfires this summer while she does her word puzzles. And marveling at trees and flowers. I have never seen anyone become so enraptured by looking at trees and flowers as my mom.
We know the days will grow shorter. But I hope I can collect as many memories that I can, like old letters in a shoe box. I hope I can keep them alive, somehow, in some compartment in my heart, even as I know they will slowly fade into the evening dusk for her.
Kenn Orphan August 2020