More than three-quarters of a million people are living with dementia in Canada. My husband, Doug, is one of them. 

In five years, 2030, nearly one million people in this country could be living with dementia. Doug probably won’t be; he will likely be gone by then. A neurologist told me in early January, that his form of dementia, a rare neurodegenerative disease called Corticobasal Syndrome (CBS), has a shorter life expectancy than most dementias. He said we might have five years. He said they will be difficult. 

But brains are complex and mysterious things. The neurologist, an experienced, kind, and caring man, said diagnoses are difficult and imprecise. CBS—while based on diagnostic imaging, testing, Doug’s medical history, and observation—is really his best guess. Confirmation of such things can only happen on autopsy. There is also likely Frontotemporal Degeneration (FTD) and could be Alzheimer’s Disease—now or in the future. 

There is no treatment. There is no cure. There is nothing that can be given to slow the progression of the disease. He told me to get our affairs in order and help my husband to “tie up any loose strings.”

He also told me I would need to be my husband’s “conscience” and “authority” as the disease progresses. He told me it’s not uncommon for people with this condition to run into problems with the law. It was a terrible thing to hear. I am shaking as I type this.

But recording bits of our journey is a fiercely determined act of self-care, an attempt to pursue purpose, and to somehow redeem this next phase of our lives. It is my hope that something I write might also be of help to someone else. In a moment of being fully present, my husband gave me his blessing to process our journey through writing. You will find my reflections on Substack at Searching for the Words.

Losing words was Doug’s earliest, most troubling, and persistent symptom. Today, he is not only losing words but also their meanings. 

Yet I find it both ironic and also strangely comforting that for now, one of his favourite pastimes is completing the word-search puzzle in the newspaper that is dropped off at our front door each morning, making neon lines through strings of letters using his yellow highlighter. The name for my Substack musings came to me as I watched him do that very thing one day shortly after his diagnosis.

In his book, The Deepest Place: Suffering and the Formation of Hope, Curt Thompson, MD, writes that hope “only ever becomes durable through the course of suffering.”

When my caregiving days are over and Searching for the Words—having served its purpose has ended—may we all have found hope that endures.