Life

Dementia is a frightening word. It conjures the thought of our mental processes breaking down and the complete loss of everything we know. Although Alexander Pope wrote of the “eternal sunshine of the spotless mind,” for many people suffering from neurodegenerative diseases and for their caregivers, the diagnosis brings profound fear of a loss of autonomy. As millions of baby boomers enter their seventies and eighties, our health care system will have to adapt and expand the way it supports seniors through memory-related illnesses.

Beyond the science and statistics, argued the journalist Darce Fardy, the stories of those who experience dementia are essential to understanding its complexity. Fardy was a seasoned reporter for the CBC: his nearly forty-year career there spanned programs like The Fifth Estate, The Journal, and Marketplace. After retiring in 1991, he served as the review officer under Nova Scotia’s Freedom of Information and Protection of Privacy Act. In 2006, he founded the Right to Know Coalition, with the aim of increasing public access to government information. In 2013, at eighty-one, Fardy was diagnosed with the most common form of dementia, Alzheimer’s. Living with Dementia collects more than six years of his columns for the Halifax Chronicle Herald in which he documented the progression of the disease until 2020. He died in 2022.

Fardy wrote like a true journalist. He didn’t bury the lead, rarely used metaphor, and rendered his thoughts in short and punchy sentences. In 2017, while describing the onset of unsteadiness, he casually synthesized a serious fall into one sentence: “I went out for carrots and got home with a broken shoulder.” Some entries probe the cognitive aspects of his experience, like “How Dementia Handles Me,” while others explore questions of policy: “Parliament Should Consult Canadians on End of Life.” Many are full of existential humour and curiosity, like “I Can’t Remember My Address, but I Can Dance.” Between self-deprecating jokes and thoughtful sociological inquiries, Fardy let in real grief and emotion, particularly when it came to the impact on his family. “Recently, Dorothea was listening to the radio when I interrupted,” he said, recalling a moment with his wife. “She was distracted from the interview, but I told her I would tell her later. ‘No,’ she said. ‘You’ll forget.’ ”

This collection can be analyzed closely, to track the development of his symptoms. The repetition of some details throughout, along with his changing voice and dwindling patience, acts as a kind of meta-commentary. Readers can also dip in and out of these columns, much as they would have if they had encountered them in a daily newspaper. Fardy’s prose in the later ones feels stilted, reflecting his deteriorating condition toward the end. Picking up on a wishfulness in his many positive self-assurances, it’s difficult not to wonder about his deeper worries. There are passages where his optimism, understandably, faltered. “I think I have lived too long,” he wrote in February 2018. “The last four years have brought on arthritis as well as advanced dementia. My parents didn’t live that long, and I don’t remember them dealing with the problems I am.” But in his final (and previously unpublished) column, penned in July 2020, he concluded, “I think readers will agree that while there is no cure for dementia, there is little reason I should be depressed.”

He attributed much of his equanimity over the years to his marriage. “In idle moments, and there are many, I fake it that I am doing some deep thinking,” he admitted. “Doesn’t fool Dorothea. She is, after all, my memory.” The couple met in 1954 and were wed four years later. In a CBC interview in 2014, Dorothea shared that she first became concerned about her husband when he bumped into a long-time colleague at the airport and acted as though he were a stranger. Readers will sense that she was much more than his memory; Fardy mentioned her often, always as a confidante, friend, and caregiver. “Without Dorothea,” he wrote, “I would be depressed twenty-four hours a day.”

In addition to Fardy’s writing, Living with Dementia features an introduction and an epilogue by his son, Peter. The volume also includes companion pieces by the geriatrician Kenneth Rockwood, who got to know Fardy through his research at Dalhousie University and was often published alongside him in the Chronicle Herald. Rockwood emphasizes that our knowledge of the brain is still limited and that these diseases demand increased awareness. He called Fardy’s writing a “public service” and encouraged others to “follow his lead.” Similarly, an accolade from the Alzheimer Society of Nova Scotia declares, “Darce Fardy made a major contribution to health care.”

Like Fardy’s columns, our lives are an accumulation of mundane details and facts. If we base our sense of identity on our familiarity with these small components, dementia can feel like a complete loss of self. Although brimming with harrowing details, Fardy’s insights are comforting. His narrative illustrates that we are more than what we remember at any given time and, in doing so, challenges the shame often associated with the illness. “I hope I’ve made it clear that I don’t see myself as a victim or a hero,” he wrote in 2014. That early intention comes through plainly in this wholesome and brave account.