My father chose to live with his dementia, not just die from it | Canada Voices

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My father was diagnosed with dementia at 81. Neither he nor we – his family – were surprised by the diagnosis. His memory had clearly been in the early stages of decline.

Over the following years, there was nothing sudden or dramatic about what we observed. But gradually, he developed a tendency to repeat himself or ask questions to which he knew (or should have known) the answers.

Dad was never one to dwell on things, so not only did he accept the situation and its likely consequences, but he also practically embraced them. He voluntarily gave up his car keys before anyone had to ask. He never complained about the resulting loss of independence, and since he had always been an avid walker, he continued with that.

This is not to say he wasn’t worried. He had seen the toll the disease had taken on two of his siblings, but he never allowed any sense of inevitability to dictate how he approached each day.

As a former journalist, it was natural for him to decide to document his experience. He pitched the idea to one of the editors at the Halifax Chronicle Herald and over the next six years, nearly 70 of Darce Fardy’s columns were published.

Writing the columns gave him such purpose. He was always preoccupied with what he would write about next and seemed to always have at least one column “in the can.”

In one column, published May 14, 2016, Dad wrote about how he remembered everything about having dinner with former prime minister John Diefenbaker, but could no longer come up with the name of his current favourite restaurant.

Perhaps what surprised him (and his family) the most was how much attention the columns attracted. We heard from countless friends, acquaintances and strangers who appreciated reading them. Wherever he went, people would recognize him, introduce themselves, and thank him for what he was doing. They would often share their own personal stories. Dad loved these encounters and would frequently write about them.

What this revealed, more than anything else, was how widely dementia affected people’s lives. Everyone seemed to have a story about a loved one dealing with it. People found comfort in reading about someone else’s journey. The positive, albeit unplanned, outcome of the columns was that they helped destigmatize the disease and brought it into the open.

I was honestly a little taken aback by all the accolades, especially since he often seemed to write about “what happened last weekend” or “forgetting to buy carrots.” Reading them again – this time in sequence as a complete set – has revealed a greater relevance than I initially realized. I now have a better understanding of why they meant so much to so many.

As the disease slowly progressed, Dad retained his sense of humour and the self-deprecation that came with it. Jokes about his condition were encouraged. He had always been a voracious reader, which led my mother to joke that he now only needed two books: he could read one, forget it, then read the second, and by the time he returned to the first, it would be new to him again!

Humour, a positive attitude and socialization may have helped keep the worst symptoms at bay for a while, but we all knew the disease couldn’t be defeated. Sure enough, every passing year saw Dad’s mental and physical conditions declined. We learned that those two things go hand-in-hand, and following a number of falls and related injuries, his increasing frailty became the more pressing concern.

Despite these physical challenges, he kept writing his columns, which served as a window into his deteriorating condition. He kept it up as long as he could, with increasing editorial support from my mother. By early 2020, his ability to piece together a coherent 500-word essay was out of reach. He died two years later.

During those last two years, Dad’s need for physical support and almost constant supervision took its toll on both him and those closest to him. His quality of life steadily declined. His mood, while often upbeat, became more volatile and unpredictable. He grew emotional and maudlin more frequently. We were told that all of this is common among those living with dementia.

Despite this, he remained engaged and engaging right to the end. He never wanted to reach the point where he didn’t know his family, and he left this world fully aware that he was surrounded by those who loved him. He died with tremendous grace.

Every case of dementia and Alzheimer’s manifests uniquely. For what it’s worth, what worked best for us was trying to retain as much normalcy as possible (easier in the beginning, less so later on), without denying the reality of the disease. Frequent socialization and humour were key.

After he died, and with his prior blessing, we collected and published his columns as a book titled Living with Dementia the Collected Columns of Darce Fardy (Nimbus Publishing). Reading it reveals that Dad clearly chose to live with the disease, not simply die from it.

Peter Fardy lives in Halifax.