Hope’s story: My parents have suffered because of Alzheimer’s Disease – I fear I’m next

On the Dying With Dignity Canada (DWDC) blog, Hope shared the heart-wrenching story of her father’s passing from, and her mother’s struggle with, Alzheimer’s disease. Now, inspired by John Scully’s personal story, she’s returning to share her thoughts on her own future and fears about inheriting Alzheimer’s Disease without the ability to make an advance request for medical assistance in dying (MAID).

With utmost respect and admiration for Mr. John Scully, highly seasoned war veteran, eloquent author and advocate of DWDC, his story has inspired me to now open up about my own dementia. Although I couldn’t possibly imagine the relentless, painful anguish John has endured for so long, I feel the frustration and unrest of not being able to secure a dignified way to leave this earth at a time of my personal choice. During the years of “living” with my parents’ Alzheimer’s Disease, I didn’t want to know whether I had the gene because there was zero chance of prevention or cure, only medication to ‘slow down’ the degeneration. Both my parents were on these types of medications, and while my mom benefitted a little bit for a short while, neither of my parents’ conditions improved by any stretch of the imagination. A couple of years ago, I learned of some clinical trials that had already commenced, and decided the time was right to find out my truth.

It should come as no surprise that, just like my parents, I too have 2 pairs of the dreaded APOE4 (Alzheimer’s Disease) chromosomes. I’ve been a numbered “subject” for some time, which lacks dignity in its own right. I am an otherwise healthy, outgoing, fun-loving mature woman who’ll become a first-time grandmother this year. In this country and century, I strongly feel I should have the right to die on my own terms, especially given my circumstances and those of others such as Mr. Scully’s, for example. I want to live as long as I am of sound mind and body, without the emotional pain, anguish, and fear I’ve experienced and witnessed over the years. The decision-makers need to find more empathy and common-sense when deliberating on this topic.

I finally have a great will to live. However, I do not wish to merely exist a prolonged life of suffering. All I ask is that an advance request for MAID that will “hold water” in the long run be put in place for others such as myself, John, and others who seek it for valid reasons. Hopefully medical technology will allow me enough more good years to grant me the joy of grandparenthood in a normal, healthy way. Otherwise, knowing other Alzheimer’s patients might benefit from my voluntary sacrifices is somewhat of a comfort. For now, every time I visit my mother it feels as though I’m looking at a mirrored image of my own future.