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Those with dementia urged to get living wills

Make your wishes clear, says a Richmond woman with the condition

Pamela Fayerman
Vancouver Sun     Tuesday, April 05, 2005

RICHMOND - Diagnosed with dementia when she was in her early 40s, Richmond resident Lynn Jackson wasted no time in preparing a living will so that when her health deteriorates, her family and friends know not to let her end up like Terri Schiavo, the Floridian who died last week when her feeding tube was disconnected after 15 years.

"I'm not afraid of dying -- just how I will get there," said the 49-year old former nurse.

"I don't want to be a burden on my family, and coming from a health care background, I know what I don't want. I've made it clear that if I can't indicate what I want at the end of my life, then don't do it," said Jackson.

A featured speaker at the first dementia conference of its kind in B.C., Jackson told delegates to the Transforming Dementia Care in B.C. conference Monday that medical professionals should encourage patients to execute a power of attorney and a representation agreement (living will) as soon as possible after the diagnosis "so that we can exercise our own choices about our future while we are still able to."

In an interview outside the conference at the Morris Wosk Centre for Dialogue, Jackson said she made sure she verbally repeated and documented her wishes when she was interviewed by television reporters at a dementia conference in Australia so there would be none of the chaos and acrimony that existed around Schiavo.

Although she is lucid, articulate and a much-sought-after speaker at dementia conferences all over the world, Jackson lives with her parents and she said there is no doubt about the state of her brain.

Diagnosed with frontotemporal dementia, which accounts for fewer then 10 per cent of the dementia cases, Jackson has been told she could live with the disease for up to 20 years.

She takes a cocktail of pills every day, including a dementia drug, an anti-depressant, a mood stabilizer, another to combat apathy and a few more for the Parkinson's-like symptoms she has also developed.

"My doctor, Les Sheldon, is a saviour because he works with me as a partner. He's a geriatric psychiatrist and also has a degree in pharmacology," said Jackson, who pulled a list of her medications out of her knapsack to show its length.

If she forgets to take some of her pills, her parents may find her sitting mute in a chair, staring into space. But more often than not, she is energetically leading the Dementia Advocacy and Support Network International (www.dasninternational.org), an Internet-based network operated by people with dementia.

"I never thought that a diagnosis of dementia would get me so many places around the world," says Jackson, who was trained as a nurse in Victoria before practising in Toronto and then moving into private industry where she worked for a medical supply company.

"My symptoms began when I moved to Puerto Rico from Mexico. Uncharacteristically, I would have these outbursts of swearing and anger. Then I started to forget phone numbers, addresses and who my clients were," she said.


Based upon Statistics Canada population figures and the Canadian Study of Health and Aging:

Source: www.alzheimerbc.org
© The Vancouver Sun 2005