Share memories of loved ones fighting Alzheimer's

 

Robin Harvey

Special to the Star

After Margaret Pitkeathly learned that her devoted husband David had Alzheimer's, she started a journal to remember their good moments together.

"June 14, 1991: Today I asked David how long he has loved me. He looked at me solemnly and replied, `Oh, honey, for eggs, and eggs and eggs ...' I have loved you for ages too, honey, and always will."

Then there was the day - June 30, 1990 - when David began an experimental trial drug program and the researcher asked him to write any sentence.

"You wrote, 'I love my wife.' That made a hard day easier," the journal reads.

And now though her husband has passed away, the Halton woman intends to be one of the first Canadians to heed Dr. Roberta Bondar's call to submit memories of their experiences with Alzheimer's.

Bondar, a neurologist as well as Canada's first woman astronaut, will be in Toronto tomorrow to launch the second phase of the Mission for Memories campaign. The project aims to raise awareness about Alzheimer's by asking people to share a memory or special story about themselves or someone they know who has battled Alzheimer's. Organizers say memories can be submitted online at http://www.missionForMemories.ca, starting tomorrow, until June 30.

"This year, I am on a new mission," says Bondar. "I want Canadians to submit their most treasured memories."

The millions of friends, family members or other loved ones of people living with Alzheimer's know too well the effects of this "terrible disease" and involving them in public education efforts is crucial, Bondar says.

She has been particularly interested in Alzheimer's disease for many years, she says. "It was the subject of my PhD postgraduate thesis," she says. "Over the years, I have been following (it), its treatments and research very closely."

With public education and research there is reason for hope, she says. She stresses the importance of early diagnosis and treatment and says there is much that can be done to treat the illness.

In co-operation with Canada's Association for the 50Plus, the campaign will eventually use the memories to create a computer desktop calendar. Twelve of the most interesting and hopeful stories will be chosen for the online calendar, which will be available to be downloaded free. The remainder will be used to increase Alzheimer's awareness. It is hoped the mission will continue to raise research funds and increase public education about the illness.

Pitkeathly's husband David was diagnosed in 1988 and the couple decided to face the illness head on, with the love they'd shared for years. She thinks the idea of sharing memories is empowering for people with Alzheimer's, their friends and families.

"It's about needing to be heard, not yucky sentimental stuff, but giving people with Alzheimer's a voice," she says. "It helps to show people with dementia today that they count."

When her husband was diagnosed, no one spoke about Alzheimer's, she says. It was treated like a dark, terrible secret.

"Right away, people didn't speak to him - they spoke to me," she says. Society needs to face the disease and get over the fear so it will lose its stigma, she says.

"If you talk about it, share your memories, you get some control over Alzheimer's. It is just another disease to deal with - a terrible one at times, for sure - but you do not have to be afraid of it. There are many treatments these days and hope."

Alzheimer's disease and related dementias affect an estimated one in 13 Canadians older than 65, or about 450,000 people today. It's estimated that 750,000 Canadians will have Alzheimer's or a related disease by the year 2031 if a cure is not found.

Pitkeathly met her husband in 1972, when she was 27 and had a summer job at the company where he worked. They married in 1981 when she was 35. It was his second marriage, she says, and since he was many years older than she, he wanted both of them to be certain. David died in 1994 at age 64.

Pitkeathly says it is crucial to remember the person inside the disease. Her husband was a former police officer and succeeded in several businesses.

"He continued to do as much as he could as long as he could," she says proudly. "When he could no longer read, he would still love to hold books; he walked and walked and walked almost to the end; never lost his connection with me and would be so excited to see me when I came into his room."

No one needs to be alone with Alzheimer's today, with support groups and the Alzheimer's Society just a call away, she says.

When her husband was first diagnosed she was very pessimistic; today she's "100 per cent certain research can and will at least find ways to prevent, and perhaps, cure Alzheimer's disease and related dementias. It's a question of time - and money."

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