How Alzheimer's made the music die

She was unfit to go to Roy Thomson Hall last year to hear Sarah sing a gospel solo. In fact, this former virtuoso recently placed her right hand on a piano and tapped something unrecognizable, keys not even sounding.

During the family’s visit to Ottawa, Pauline sat in her wheelchair, eyes vacant. She who never wore pants was in dark sweats. She spilled orange juice, leaving a bright, sticky stain down the left leg. It sat there for the whole afternoon. She was oblivious.

“She would die — she would just die of embarrassment,” says Laureen.

But Pauline still smoothed her hands across her sweats, as if they were the latest gown from Paris. She does it constantly. Somewhere, some small part of her must exist. Must.

The Fishers are among thousands of Canadian families who desperately try to reach beyond dementia to the loved ones they knew. This past week in Toronto, Alzheimer’s disease has been in the news, not letting us forget the struggles of these families coping with what’s essentially the loss of a human being.

It began Monday in Scarborough with the discovery of the frozen body of a woman who had wandered out into the night and died in the freezing cold. The Star has not been able to contact her husband, but it is believed she suffered from Alzheimer’s disease or another form of dementia.

Friday, family and friends buried Keith Davey, the Liberal “Rainmaker,” whose superior brain crumbled in the last years of his life, ravaged by Alzheimer’s. His wife, Dorothy, kept a vigil every day at Belmont House, the facility that cared for him. The family has asked that donations go to the Alzheimer Society of Canada or the Belmont House Foundation.

Alzheimer’s, which accounts for about 64 per cent of all dementia cases, is a thief that steals the power to think and ultimately, breathe. Half a million Canadians suffer from it or dementia, a number expected to grow to 1.5 million within 25 years, according to the Alzheimer Society.

“It is a devastating disease and it engulfs entire families,” says Rosanne Meandro, senior communications officer for the Alzheimer Society of Ontario. “It is not a natural part of aging. It is a progressive disease of the brain that is eventually fatal. It kills. Maybe one day it won’t, but now it does.”

Yet Canadians “are still in denial about the disease,” Meandro says. “They are fearful because they don’t understand it.”

That’s troubling, she adds, because if boomers live long enough, one in three is expected to be an Alzheimer’s patient. And yet, in a recent Alzheimer Society of Ontario poll of 1,006 boomers, 23 per cent couldn’t identify any of the early warning signs of the disease. Despite ongoing education campaigns, about 50 per cent think memory loss is the only sign. In fact, there are 10 early warning signs.

Meandro says it has been difficult to reach out to some Asian communities because “the disease can be highly stigmatized. They can be tight-lipped about it and try to pretend it’s just part of growing old. We think perhaps there could be an unwillingness to access help because of the stigma . . . There is a great need to reach out, and we are trying our best.”