Susan Eng, vice-president for advocacy at CARP, a national association for senior citizens, disagrees that denial is worse among Asian communities. There are, for example, four Yee Hong nursing homes for geriatric care in the Toronto area, each with a wing for patients with dementia, and 1,000 people on the waiting list.
“Yes, there was some resistance 20 years ago, but that has changed,” says Eng. “I would agree there is a need to reach out, but it’s true for every community. I think it is wrong to think there is a kind of cultural resistance to getting help in the Chinese and other Asian communities.”
Alzheimer’s is so frightening because there is no cure. There are medications to retard the progress of the disease, as well as action plans and support groups for families and patients, but not the cure people seek. Not yet.
“Canada has some of the brightest minds in terms of dementia research,” says Meandro, “and we are in the forefront. In seven to 10 years, we think we may be coming to a breakthrough.”
Meanwhile, Judy Foley, 59, slowly watches her beloved husband, Lowell, 76, slip away from her. They wed 15 years ago, a late marriage for both. “It is the love of our life for each of us,” she says. “We’ve had 10 good years.”
When his moods began to change, he was a retired University of Colorado professor of social work and she the CEO of a Canadian public service organization. She’s no longer a hard-driving executive, instead working only a few hours a day and then caring for Lowell at home. For now, she is able to cope. The disease is worsening, but she doesn’t “spend a lot of time thinking about it. I would be in tears six times a day.”
She continues: “We don’t waste any of our energy pretending. It’s already underway and we know where it’s going. There will be a time when he can no longer live at home, and I just hope that by then he is no longer aware of what’s happening. It won’t be so hard.”
It’s a winter wonderland night in Toronto, the kind the former Pauline Trudel, with family roots going back generations in Trois-Rivières, Que., would have loved. She’s far away, locked in her Ottawa room and in the darkness of her mind.
Tonight, the family remembers how wonderful she was as a wife, mother, mother-in-law and grandmother. They talk about her pain when she lost her six-year-old, Helen, who had Down’s syndrome and died instantly, likely from a blood clot.
There are stories of Pauline’s self-discipline, of her high expectations of her children. And they remember her solicitude towards them, such a contrast to the feeling of annihilation that comes with having a mother who looks right through her children as if at strangers.
“You just want to grab her and say, ‘How can you not know your own son?’ ” says Laureen, who insists she would fight against the darkness.