Hope’s story: My parents’ struggles with Alzheimer’s disease

Hope’s mother and father were both diagnosed with Alzheimer’s disease within five years of each other. As their primary caretaker and decision-maker, Hope has watched both her parents struggle through their illness and mourned her father’s eventual death from the disease. This powerful story is her plea for access to advance requests for medical assistance in dying (MAID) for those with degenerative illnesses like Alzheimer’s disease.

When we first moved to Canada, one of mom’s jobs for several years was what’s known today as a “Personal Support Worker,” so her awareness of total patient care was vast. Over those years, mom had made it repeatedly clear to both my brother and I that, should she ever reach a state where she couldn’t live without total assistance, we must find a way to help end her suffering.

I married in my 20’s and started a family. As our children were growing up, each of my parents had been diagnosed with Alzheimer’s disease within about five years of each other, which happens to be the age difference between them. During the times of onset of their respective diseases, my older brother had slipped into a state of denial while I immersed myself in ensuring the best quality of life possible for our parents, under the circumstances.

I will never forget the day it became necessary to arrange for my father, formerly the traditional patriarch of what was left of our family and head of the household, to be removed from his home and admitted into a hospital. Once father was moved out of family home, mom rapidly declined and turned to alcohol. I took her to help meetings and the self-medication eventually stopped, but she was never the same. At the hospital, for my father’s safety and that of the staff, it took the doctors over 18 months to determine the combination of medications necessary for him to become docile enough to be “manageable,” and thereby eligible for admission into a long-term care facility. Unfortunately, as a result, he lost his speech and mobility. His suffering lasted about 11 years, by the end of which all his joints were frozen to the point where receiving personal care became excruciatingly painful and his cries could be heard throughout hallways wherever he was being cared for. It’s been eight years since dad’s suffering ended, which felt as if I had lost dad for a second time. Now he’s resting in peace.

Combined, I spent about 20 years ensuring all their affairs were in order and all their needs were met. Dad always had excellent private caregivers in his “home” and my more easygoing, light-hearted mom enjoyed living a so-called normal, happy life, on lighter medication and in her own home/community of 51 years with skilled live-in caregivers’ loving care (except one).

One horrible autumn evening nine years later, as her caregiver was preparing snacks, mom stood up from a chair, misstepped, and took a fall that caused a hip fracture. Because her dementia had reached a more advanced stage and she had recently been under lengthy general anesthesia, she was unable to follow the physiotherapist’s instructions post-surgery and never did recover. Mom has been residing in a Long Term Care Facility ever since. Her 90th birthday is this week and she’s still alive, though barely eating. She has always passed every aspect of her annual medical exam with flying colors but the truth is she is not “living”; rather, she is spending whatever remaining time and energy she has moving her head from side to side, trying to find a less painful, more comfortable position to rest in. This is a simple thing that’s been impossible to achieve for far too long, but she’ll one day be pain-free, just like dear old dad.

I always felt it was my duty to ensure the wellbeing of my helpless parents. Fortunately, my understanding, empathetic husband is and was a good father, and he became the one truly present parent in our children’s lives. Our kids deserved to grow up in our family of four, without the heartache and baggage of an emotionally-drained mother and two less grandparents. Clearly, it’s too late for my loving parents to be eligible for medical assistance in dying (MAID), but I pray that, should I or anyone else finds themselves in a degenerative state of any sort, the right to MAID is available without the red tape and complications that exist today. Everyone should have the right to live happy fulfilling, lives, free of physical or emotional pain, suffering, or the burden of that “dark cloud” that constantly looms overhead, as it has for my family for so long. My brother and I are certain that our parents would never have wanted their children and grandchildren to have no choice but endure the traumatic emotional burden I struggle with to this day. I certainly do not want that for those of my own.