Unforgettable

Our journey into the world of Alzheimer’s and dementia began about four years ago, when my father’s memory began slipping and sliding. Because his mother and eldest sister had also been challenged with dementia, we were sort of prepared for it, and grateful that it hadn’t really impacted his life up until then.

When my mother started losing it, though, we were surprised and taken aback. Always the rock-solid centre of our universe, this amazing woman who raised five children was suddenly unable to cope. Then, collectively as a family, came the stark realization: Neither parent could help or rely on the other, rendering them helpless together. The dreaded “D” words started entering our conversations. Dementia. Dependency. Denial.

My father made it well into his 80s without a glitch

At age 86, my father was still working out at the gym twice a week. He never smoked, rarely drank, and (an Olympic hopeful in his youth) was impressively dedicated to his lean, muscular physique. Having retired only about a decade earlier, he was content with a simple life; maintaining the home he and my mother have shared for over 40 years, enjoying time with his five adult children and grandchildren, and lunching with his best friend every Friday, a commitment that I help him keep to this day.

A minor car accident triggered us to the possibility of dementia; it was clear that he may have zigged instead of zagging, and that his reflexes were not reacting predictably. We began the painful process of convincing him to give up his driver’s license (and, in his mind, his independence) and made an appointment to have him tested. In the meantime, he suffered a mild stroke, and the surgeon had to clear out a clogged neck vein.

My father turned 91 last year. His vascular dementia is relatively stable; his abilities have diminished, but not significantly. He no longer goes to the gym, but he can still dress himself, make toast and coffee in the morning, get the leaf-blower out in the summer and a shovel in the winter. He spends a lot of time napping, gazing at television, going for walks and sitting on the back deck watching birds and squirrels. He is, for the most part, content with his life and living “in the moment.”

On the other hand, he forgets within 15 minutes what you’ve said, or what’s he’s said, or what has gone on in his immediate environment. He forgets what he ate, what he did, and he forgets that he forgets. He still insists that there’s nothing wrong with his memory. Or his hearing. Or his driving, for that matter. He’s stuck on stubborn, and that’s OK.

My mother took it hard and on the chin

There is no history of dementia in my mother’s family, as far as we know. And to this day, we’re still not sure what form of dementia or Alzheimer’s that she had, or how it came about. Research around the world is ongoing and inconclusive, so for now, wondering “how” or “why” is pointless.

I have a theory, though it’s unsubstantiated. In 2012, my mother had a fall during the night. She got up to go to the washroom, possibly stood up too quickly, and fainted. Unfortunately, she went head first into the wall, smashed the bridge of her nose, and then fell sideways and hit her head on the bedside table. She spent a week in hospital undergoing tests and, aside from the bumps, scratches and bruises, they told us she was fine and sent her home. But she was never the same after that incident. I suspect a brain trauma injury may have precipitated the onset of her dementia.

Daily activities, including caring for her husband and organizing a busy social life, were becoming increasingly difficult. When she started “blacking out” (forgetting entire days) and forgetting her words (aphasia), we realized we had to investigate and seek help. She was subsequently diagnosed with Alzheimer’s by a geriatrician at a Memory Clinic, subsequent to an hour-long interview and the administration of the MMSE (Mini-Mental Status Examination) questionnaire.

The progression of my mother’s condition was alarmingly fast, compared to my father’s. She went quickly from being able to whip up meals for both of them to not knowing what the stove or microwave was, or what purpose they served. Then she stopped recognizing/understanding the telephone, the washer and dryer, and the TV remote. Friends’ names and faces began to be unfamiliar. And the aphasia – her brain couldn’t find the right words when talking (everything you say comes out sounding like gibberish) – was especially cruel, because she had been such an outgoing, sociable person. She told me, while she could, that having Alzheimer’s felt like living in a horror movie full of scary surprises.

Family is everything

My father says it often: Family is everything. My mother cried every time she remembered putting her mother into a residence, because she regretted that decision and was consumed with “coulda shoulda” scenarios. It was important to both of them that family be the first solution.

As the only single/unmarried offspring, as the entrepreneur who chose career over children, it seemed I was the likely one to step up and help out. In some ways, it was an easy decision. My parents dedicated their entire life to raising five children, all of whom are happy, healthy and loved. As much as I took it for granted growing up, I now understand what a commitment it was for them, and what an undervalued sacrifice it is, generally, in today’s money-driven and individualistic society. In fact, it was only this sense of “individualized freedom” that gave me pause; I was just about to move to the west coast and begin my own semi-retirement. Helping my parents has meant putting that on hold for a while.

In any case, in June of 2015, I took a sabbatical from my career, sold my condo, moved to an apartment a few minutes from the family home, and began my test-drive as a caregiver.

Oh, if only I had known what an adventure I was embarking upon…