For more than 10 years, Linda Crabtree watched her mother suffer and deteriorate from Alzheimer's disease. In this blog post, she remembers both her last and lasting memories of her mother, and then looks ahead to her own uncertain future under an unclear and unconstitutional law.
It takes guts to slowly starve yourself to death.
These are the last memories I have of my mother who suffered from Alzheimer’s for more than 10 years, had lived in a long-term care home for five years and at the end of that five years thought that anyone who entered her room was certainly going to kill her. She fought the caregivers who tried to give her a bath, didn’t know her children, couldn’t remember whether she had married or not, sat in urine soaked diapers, tried to pull her catheter out and played with her own feces.
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The lasting memories are of a woman who saw me through years of heartbreak when, as a young child, I was put into leg braces. A woman who taught me that love is more important than money, who built a wonderful home for three children and a husband who kept three jobs. She was a talented artist, an antiques dealer and she put herself out into the community to save a beautiful old vintage carousel that to this day remains in our community to delight youngsters of all ages.
Mom also had the same disease that I do — a progressive neuromuscular disease that affected her very lightly. I inherited it from her. I also inherited her intestinal fortitude. When she felt life was no longer bearable, she stopped drinking and eating. She wanted to die. She kept calling for her mother. She was 96. Her mother had been dead for more than 60 years, but in her mind, she was still a young girl and she needed her mother.
Throughout the days I watched her die, I wondered if I would have the guts to stop eating, to stop drinking, to want to stop living. I have that neuromuscular disease 100 times worse than my mother. I haven’t walked in 20 years, I am losing the use of my hands, my breathing is affected and so are my vocal chords. I have nightmares about being alone, helpless, with no money, no friends, no advocates, no one who loves me. I have nightmares about being left in a bed somewhere in long-term care, sitting in sodden diapers, smelling like feces, unable to feed myself, unable to get out of bed, unable to get help because no one really cares. In my nightmares, I’m just an old crippled woman waiting to die.
I don’t want to be that old crippled woman. If my devoted husband, who has looked after me and our home for the last 35 years, dies before me, I will do my best until I know that I can do no more and then I would like to die. I am not religious. I am realistic. We all die. I simply don’t want to die like my mother did. I don’t want to suffer with Alzheimer’s and be reduced to a completely helpless bag of bones, wishing she were anywhere but where she is. Wishing she were gone.
My last 30 years have been devoted to helping other people with my disease get on with their lives, and I would like to be given the opportunity to say how I would like to end my life. And I would like my wishes to be respected. No one should have the power to tell me when I have had enough. I know what I don’t want and I’d like to be able to say how I would like my life to end before I am too incapacitated to express myself. The indignities I see in my future are not the way I want to die. As Bill C-14 stands right now, I trust no one to respect my wishes. My local hospital, hospice and long-term care hospital do not provide medical assistance in dying. I will keep myself as well as possible, but when the inevitable comes, I will follow my mother’s example and summon the guts to starve myself to death because no one else out there has the guts to help me die any other way. What a damn shame. My life, my body, my choice.
Linda Crabtree is a writer who lives in Ontario. She has been made a member of the Order of Canada and the Order of Ontario in recognition of her work with people who have Charcot-Marie-Tooth disease around the world. At age 75, she continues her advocacy work.