When Madeleine Honeyman's geologist husband became forgetful, disoriented and difficult, a neurologist delivered a cruelly blunt assessment.
"Forget about him," she was told. "He'll be in hospital for four years, dead in five."
That was 1971.
Ken Honeyman was, at 55, too young to have "senile dementia," the term used to describe his illness in seniors. One doctor used the term "Alzheimer's," which Mrs. Honeyman had never heard, while others were sure he had a condition called normal pressure hydrocephalus, more commonly known as water on the brain.
A shunt was installed to drain the fluid, but the procedure accelerated his brain damage, and he was left bedridden and hospitalized for the next 14 years.
Almost four decades later, Mrs. Honeyman, now 97, still smarts at the way she and her husband were treated.
"It was humiliating. I said to myself: 'I will never let another woman go through what I did.'"
As a teacher, she was an avid reader, and the more she learned about Alzheimer's disease from medical texts and journals, the more certain she became that the diagnosis was accurate.
"The doctors who treated my husband couldn't even spell Alzheimer's," she says. But, after the shunt operation failed, they came to recognize their error, prompted by new research. In the 1970s, scientific interest in brain diseases was burgeoning.
She befriended scientists in Ottawa and Montreal who would found groundbreaking memory clinics. She also learned that her husband wasn't alone; many others were in his predicament.
So, Mrs. Honeyman began to mobilize, determined to start a support group and advocate for change. The first meeting, publicized largely by word of mouth, drew 100 people, almost all of them women caring for their husbands. But the stigma was such that only two dozen would reveal their names.
A key concern was that, according to provisions of mental-health law at the time, when men with dementia were declared incompetent, their wives essentially lost everything because the estate was turned over to a legal guardian.
"At the time, a lot of women didn't even write cheques or handle money," Mrs. Honeyman recalls. (She was an exception because her husband's work took him away for weeks or months at a time.) "We had to do a lot of basic education."
She also lobbied successfully to have the law changed.
Such were the beginnings of the Alzheimer Society of Ottawa and the Alzheimer Society of Ontario.
Similar grassroots movements were taking root around the country and, in 1978, the Alzheimer Society of Canada was founded, the first national organization in the world to advocate for patients with dementia.
Mrs. Honeyman says that caregivers innovated and pushed researchers and clinicians to listen. Families created day programs in which Alzheimer's patients were able to enjoy music, even though doctors initially called it a waste of time.
One woman, whose husband had a habit of wandering off, sewed his name and phone number on his pyjamas. That move evolved into a wandering registry, when families recognized they needed easy ways for police to identify their loved ones. (A physical description, next of kin, medical details and photograph of persons with dementia can be registered in the Canadian Police Information Centre, the database usually used to track criminals.)
"Today there is so much help. We just made it on our own, and I think we left a legacy," Mrs. Honeyman says.
She was also vindicated. When her husband died, she insisted on an autopsy. It revealed that, rather than water on the brain, he'd suffered from dementia after all.
André Picard