On a summer day in 1992, my mother told how, more than forty years earlier, my then-baby brother broke his leg. Then she told it again. She told the story four times in one hour, in fact.
But my father and I didn’t talk about it. We couldn’t—not yet, for many reasons.
- Because my mother, a retired mathematics professor who’d earned her PhD when few women even attended undergraduate school, had always identified with her intellect, her ambition, her drive. Without that, who would she be?
- Because my father’s ability to cope in the day-to-day depended on denying that anything was wrong.
- But mostly, because of stigma.
People in my parents’ community were uncomfortable with dementia, which increased my father’s embarrassment and isolation, and my mother’s loneliness.
In 1997, my mother’s family physician finally diagnosed Mom with “probable Alzheimer’s.” Even then, it took months before eventually—carefully, gently, fearfully—my father and I began talking about twin taboo subjects: health and money.
I lived 800 miles away—close enough to visit my parents every couple of months and be free with unsolicited advice, but too far to be of actual help in their daily lives. Each time I left, I wanted to tell myself, “It’s not so bad.” I needed to soothe my guilt at leaving them. But I knew better.
After Mom’s diagnosis, I wrote about what I’d seen and about the disease itself. I tried to make concrete the general words to describe symptoms like “confusion” and “agitation,” by describing my Mom and our interactions.
After her death, I gained some distance from Alzheimer’s. I drew closer to my father. I began to see the time of her illness as only one part of their lives.
And because I was a professional writer, I kept writing. I tried for years to find the right format in which to tell the story—Mom’s, mine, our family’s—and what I’d learned.
At last, I found personal essays, a form that allowed me to write both “in the moment” of Mom’s illness and in my years-later “now,” with the hard-won wisdom I’d acquired as time passed. I still write, often about the sometimes-surprising moments when I miss both of my parents again, years after their deaths. Over the years, I published essays in literary journals. Some received recognition.
I hope readers see that people with dementia and their care partners remain people—unique individuals, with lives that include joys both big and small. I hope readers understand that while a family’s emotions can include guilt, anger, and embarrassment, they can also include love.
I hope that somewhere, a reader gives my book to a friend, and they start a conversation. Because talking about Alzheimer’s and dementia is how we create a more understanding community for all of us.
Marion Agnew lives and writes in an office in the municipality of Shuniah in northwestern Ontario, overlooking Lake Superior.