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Opinion My mother couldn’t choose her story’s end. This needs to change

Kathleen Venema is an associate professor of English at the University of Winnipeg and the author of Bird-Bent Grass: A Memoir, in Pieces, from which this essay is adapted.

My mother and I were exceptionally close from the day I was born until the day she died. During all those years, our relationship was defined by thoughtful, animated, meditative, informally philosophical discussion. She was my mother, my mentor and my friend. When her doctor diagnosed Alzheimer’s disease in July, 2005, my world came skidding to an end.

Then Mom and I took stock and gathered up as many pieces as we could. We were, in a thousand crucial ways, of one mind, and I was not yet ready for Mom to lose hers.

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So, we allocated our Friday afternoons to activities most likely to slow dementia’s erosions, and for the next five years, we read together, wrote together, talked, walked, sang together, made up word games together and played them. We used a range of memory prompts, primary among them the 200-plus letters we’d exchanged 20 years earlier, while I was working in Uganda after the end of a civil war, and my mother, in her 50s, was increasingly engaged in the world broadening around her.

Predictably, our early letters rehearsed our intense homesickness for one another (“It’s a good thing I didn’t know how much I’d miss you or I never would have come”; “I didn’t have much heart for knitting lately. I still have to get used to you being all the way in Africa and then I can’t knit right away”).

The letters did everything they could to bridge the distance between us, and they recorded us getting on with the work of our lives. For Mom, that included encouraging the people at her conservative church to greater political awareness; pursuing a university degree (“I got my last assignment back with a ‘wow’ on it”); and various forms of activism (“I’ve just finished signing 70 cards to MPs urging them to support disarmament and banning of nuclear tests, cruise tests, and space weapons tests. And I have approximately 230 to do!”).

In 2007, the letters were their own tangible proof of existence, but Mom sometimes expressed doubt. “I wrote letters?” she sometimes asked when we started to read, and sometimes she multiplied the emphases in her question: “I wrote letters? To you?!” But we persisted and paved the way for remembrance. “Oh,” she would tell me, looking up, her face alight, “now that I read it, of course I remember.”

Remembering, though, sometimes came with its own demons. We mourned a beloved family member throughout the gruelling winter of 2008, and Mom’s profound grief intensified both her awareness of her diminishing capacities and her wish to die. Mom had always celebrated progressive politics in the Netherlands, where she was born, and from the mid-1970s onward, she’d explicitly, repeatedly endorsed her birth country’s broadening acceptance of doctor-assisted dying. It wasn’t a surprise, in 2008, to hear her speak more and more often about ending her life. I understood exactly how she felt. I knew I’d feel the very same way.

But the subject came up so frequently that winter, I began to dread our visits, terrified she’d ask me to promise to help.

“Kathleen,” she’d demand, “if I could not communicate with anybody and that was obvious to you, if I couldn’t have a conversation with you, if I wouldn’t know who you were, or who Dad was, or my grandchildren – what is left then, tell me that?”

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“It’s not legal now,” she retorted, when I tried that angle, “but when you think about it from my position, it should be.”

Despite her utter seriousness, though, and her admirable determination, Mom was no longer capable, by 2008, of thinking through details, logistics or procedures. If she were going to end her life, someone would have to help her.

For five months, I lived what felt like an impossible dilemma. There were ways to help my mother die, and I could have investigated, could have identified collaborators, gathered ingredients, designed a plan. Because I knew, deep in my being, that this was what Mom would have wanted, what she would have opted for if she’d had any choice in the matter.

But logistics defied me, competing ethics defied me, my love for my mother defied me. I was not yet done with the story we were making together, and so I held my breath while she talked, nodded encouragement as she rehearsed her garbled schemes. I let the law tie my hands. I let Alzheimer’s continue its corrosive work, and by spring, 2009, Mom no longer remembered what it was she had planned to plan.

Mom’s final years weren’t easy for her and they weren’t easy for us. By January, 2015, she no longer spoke recognizable words in any of the five languages in which she was once fluent. She vocalized only to communicate almost constant distress. I’d reach her care home on Fridays and find her bent double over the tray attached to her wheelchair. I’d lay my face beside hers, massage her arms and remind her that I loved her, hoping to balance off at least some of the distress. Because I couldn’t help thinking, every single time, that it was anger she was expressing, at us, for not helping to end things before they got to this point. She so clearly had not wanted to get to this point.

Canada finally passed medical-assistance-in-dying (MAID) legislation in June, 2016, but without a single provision for people with dementias. So that, even now, almost three years later, people with serious and incurable dementias, people who are, unarguably, in states of irreversible decline, people who can reasonably foresee their natural deaths, still cannot choose – as my mother could not choose – the conclusions to their own stories.

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On February 15, 2017, Alzheimer’s vanquished my mother’s remaining bodily processes and she died. I didn’t regret our final years as I held her for the last time, shrunken, emaciated, but I mourned the jaunty, purposeful, dignified exit she might otherwise have chosen. One month before MAID passed, I gave Mom a last, achingly sweet Mother’s Day card, a simple pen-and-ink sketch of a little girl on an old-fashioned swing above a field of flowers. “Happy Mother’s Day,” the card read, “Remembering every happy moment.” We didn’t, of course, any more, in May, 2016 – remember every happy moment. But here is one:

It’s the fall of 2012 and Mom and I are still taking walks together in the forest behind my parents’ home. By now, our conversations and our word games are much diminished, but while we walk, I throw out words and ask Mom their definitions. She balks at “enterprise,” but when I assure her that this isn’t a test, she takes a moment, considers the next word, then launches into a lively but muddled account of what it means to “vacillate.” I tell her she’s correct, then ask about “correspondence.” “Correspondence,” Mom repeats without hesitating. “That is when – say you have something and then something else. And you have something and you say, that looks like the same thing.” I tell her she’s exactly right: that when one thing corresponds with another, it means that the two things are quite alike. “Jah,” Mom says, “and then if, say, you are living here and someone else is living there, and if you want to communicate with them, maybe you send them something, like a message.”

We’re seven years and four months past the Alzheimer’s diagnosis, but Mom has, without prompting, just produced both main meanings of correspondence. “You’re absolutely right, Mom,” I tell her. “When I lived in Uganda, we’d send each other letters, and those letters were our correspondence.” A few years ago, talk about the letters sometimes made her anxious, but today, she’s deeply pleased. “We did, eh?” she says, dazzling me with a smile. “That’s good!”

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