As Mothers’ Day 2022 approached, I found myself thinking about my mother. Despite my irritation with the crass commercialization of something that started out as a call to women to stand up in opposition to war, I wished there was something I could do on this day for my mother, existing as she does in her twilight world of Alzheimer’s. A phone call would be pointless. She can no longer read. She lacks for nothing material. She’s not mobile enough to go for a drive or a walk. My siblings who visited her most recently reported that she had not been able to engage with them.
This kind of existence is the exact opposite of how my mother lived the first eight decades of her life.
The federal government’s Special Joint Committee on Medical Assistance in Dying is currently holding hearings to discuss possible amendments to the existing legislation, including an amendment to permit advance requests or directives. This would allow a competent person to make a written request for medical assistance in dying which would be honoured later, even if they have lost capacity to make medical decisions.
I can’t give my mother what she really wants for Mothers’ Day, but I can make sure the decision makers hear her story. Below is what I submitted to the Committee as it begins its hearings.
My mother watched her husband slowly disappear into himself as Alzheimer’s took over his mind in the last several years of his life. Always a quiet man, he became almost completely non-conversational. He began to wander and, after several episodes in which mum — terrified at what she might find — had to go looking for him, she developed a complex system of locking up the house so he couldn’t get out. She became exhausted as she kept an ear and eye open every night so she would know if he started moving around the house. The world travel that they had enjoyed together for many years came to an end, and their busy social calendar emptied, as her husband no longer could manage interactions with other people. Eventually, she made the difficult decision to move him to a long-term care facility.
When he died, mum reminded me and my siblings that, as she had said many times in her life, she did not want to live if she developed dementia. Her exact words? “Shoot me if that ever happens to me.” I promised her that I would, never imagining that her mind would, one day, be ravaged by dementia.
Through most of her life, my mother was the busiest of people. A stay-at-home mum when her six children were young, she always had homemade cookies at the ready and encouraged us to bring our friends home after school. She was active in parent-teacher associations, offered a helping hand when needed with a science or home ec project and encouraged and drove us to and from our extra-curricular activities. She and our father played bridge, square danced and entertained.
After her marriage ended, my mother went back to work and took up Scottish country dancing, hiking and canoeing, which is how she met her second husband. Mum read voraciously and was part of a women’s book club for many years. She was an enthusiastic member of the Canadian Federation of University Women, helping to organize her chapter’s annual used book sale and heading off to the theatre regularly with the Movie Mavens group. She was an active volunteer and was involved with many social and individual pursuits as well. Always curious, she loved nothing more than meeting new people and having new experiences. She loved to talk, and she really loved to laugh.
Her energy could be overwhelming; it wasn’t uncommon for one of us to urge her to sit down and relax for a few minutes.
No more fooling ourselves
Tragically, my mother began to show signs of early dementia not long after her husband’s death. Her cognitive deterioration was slow and unsteady, with periods of time when we could convince ourselves it wasn’t all that bad and, maybe, it wouldn’t get any worse.
Of course, this was not the case, and my mother now lives with severe Alzheimer’s in a long-term care facility. She is loved and well cared for but, like so many in her situation, more than two years of living under pandemic restrictions has taken an additional toll on her well-being. Her physical health is remarkably good, so she could continue to exist like this for a long time to come.
A respectful exit plan
The death of those we care about is always sad. Almost two years ago, our father died of heart failure. It was an unexpected death, and we all grieved it deeply. However, we did not have to watch him disappear in bits and pieces from our lives, and he did not have to live with the indignity of slowly losing more and more of who he was.
It breaks my heart that we have not been able to give our mother the one thing that she wanted so much: an exit that would not have left her trapped inside a functioning body, with a mind that just doesn’t work anymore.
Instead, my siblings and I visit as and when COVID rules permit, we pretend to one another that “she seemed a little more alert today,” we worry that we might not know if her care were to become substandard or she were abused in some way, we send her flowers and we mourn her loss even though she is still alive.
I do not want my children to face the same situation as I age. In the hope that, before I might need it, Canada will incorporate advance requests for MAiD into its assisted dying legislative framework, my power of attorney for personal care already includes such a directive.
Advance requests allow people who want to and are competent to do so to plan ahead for the kind of death they want. Making it legal is the humane thing to do.
Happy Mothers’ Day, mum.