What happens when you're denied the only thing giving you hope? For one Dying With Dignity Canada supporter, this has become a cruel and painful reality for his mother, who has Alzheimer's disease. As proposed, Bill C-14 exempts individuals with dementia and other degenerative neurological conditions from accessing assisted dying even though those same individuals would have been eligible under the Supreme Court's Carter ruling. Our supporter — who has chosen to remain anonymous — writes about the devastating impacts this flawed assisted dying bill has had on his ailing mother.
I only spent two back-to-back summers of my life knowing my grandmother, who lived in Europe. The first time I visited in the mid-’80s, I was around eight years old. I remember a lot of weird tickling kisses on my neck—my grandmother’s way of showing me affection across a slight language barrier. The next summer, I mainly remember her asking my cousins and me if we wanted breakfast—over and over and over again. A couple of years after that, it was my mother’s turn to fly to Europe for a visit. My grandmother slapped my mother in the face because she didn’t believe and recognize that it really was her daughter from Canada.
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Alzheimer’s disease made my mother unrecognizable to my grandmother and my grandmother unrecognizable to my mother. After that, my mother stressed to me the importance of doctor-assisted dying because her proud mother would never have wanted to be a “zombie,” given the choice. However, she was not given any choice, and in fact, the doctor in Europe denied her the knowledge of a diagnosis by only telling my aunts, as to not upset my grandmother. A fall out of bed due to confusion from Alzheimer’s led to surgery, where anesthesia made my grandmother mute after she awoke (anesthesia usually advances dementia, tremendously). My grandmother was kept alive for more than a decade via feeding tubes because one of my aunts decided that this was the best option.
No one considered this "living," though.
This situation caused huge sibling rifts among my aunts that carry to this day. The whole ordeal made my mother consider the possibility of a dignified death if she ever got the disease.
Around 2004, my mother started to slow down mentally. Elaborate meals weren’t made anymore and mild forgetfulness would creep up here and there, but she was still herself. This slight change in behaviour angered my father, who recognized it as mild dementia and divorced her in 2008. Being a very strong woman, my mother tried to persevere.
With very mild dementia, my mother made costly financial decisions that shrank her finances to about a third of what they should have been. Her girlfriends, who were all religious, tried to break her spirit in regards to how wrong the divorce was, so my mother had to stop going to church, which she used to love going to, and also to stop associating with her friends.
January 2011 was the last time she drove because it was too difficult. She had been forgetting quite a bit, but refused to acknowledge it as being anything other than normal old age. She continued to have memory issues and became aggressive, living a life away from friends.
Between 2012 to 2014, she mixed up days, and in 2015, she started to mix up months. It was in 2015 that a MRI, which almost gave my mother a heart attack, partly because of the cold temperatures and partly because of the scary noises, revealed Alzheimer’s disease (possibly Lewy body dementia). She started tripping on steps, not recognizing my house, and having bathroom accidents, among other things.
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Community Care Access Centre was called and declared a five-year waiting list for the only decent long-term care facility that seemed "OK." I opted for a private room because, even though I can’t afford it, it would knock a year off of the wait time.
My mother, however, found great comfort in the Supreme Court of Canada’s decision on assisted dying in Carter v. Canada. She heard Alzheimer’s specifically mentioned and was grateful that Canada would finally join Switzerland in offering citizens the right to choose dignity over what she considers the worst possible fate anyone could receive.
She’s been waiting patiently, worrying that she will suddenly advance to the point of missing her window to consent to the process. She spends her days knowingly repeating the same stories and not being able to cook simple things or leave the house on her own for the park across the street due to safety issues. She repeats over and over that her favourite brother-in-law has died (grieving each time), so that she doesn’t forget. She has horrific nightmares that carry long after waking up and has unimaginable pain in her legs (possibly from dementia medication) and constant diarrhea (also from medication).
The frustration of not being able to get dressed on her own drives her to depression, so she usually just wears her pajamas all day, which she sometimes mistakes for outside clothing and gets frustrated when she is asked to change before heading out for a walk. She hasn't been able to read for more than a year, and I have had to confiscate her nail file because she will oftentimes cause her nails to bleed by over-filing.
She clings to the hope of the June 6 deadline.
'An inevitability she cannot stomach'
On May 9, 2016, my mother expressed to her doctor her wishes for doctor-assisted dying. The doctor replied that “Doctor-assisted suicide is not an assembly line for a gas chamber where people can line up to kill themselves. Life has meaning.” He also insinuated that I didn’t care about my mother’s life when he told her “I want you to live” right before sprinting out to see his next patient. My mother was devastated by this news because she realized that she needed a new doctor to get the proper referrals.
On May 11, though, I told her that progressive mental degenerative diseases were removed from the bill that she was waiting for, and she crumpled on the dining room table in disbelief and got dizzy (stress easily makes her dizzy these days).
My mother is not suicidal and often mentions how she would have loved another 10 years to see her grandchildren become adults. Her only goal with assisted dying is to prevent herself from becoming someone who cannot recognize her own family — an inevitability she cannot stomach. Doctor-assisted dying is her last wish and now I don’t know how I am going to help her.
I hate the position I have been put in as I do not want my mother to die. However, we think alike, and I would also choose a dignified end, which is why I can even consider such a thing for the only person in my life who cares about me. To have to consider leaving the country to find willing doctors is just too much for me to handle emotionally and physically. I resent the fact that this bill was altered from what it was originally intended to be — a way for people to choose a dignified end for Canadians (without having to apply for passports).