September 29, 2014 1:09 pm
Updated: October 2, 2014 6:57 pm

Dawna Friesen: Dementia and living in the present

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Starting Monday, Sept. 29, Global National will air a series of reports on living with dementia and how Canadians are adapting to a disease that affects so many — and at a much younger age than you may think.

I’ve always believed in living as much as possible in the present, and tried not to dwell on what might be or could happen.

Even the past only exists as a memory, and to keep it alive requires retrieving it and dwelling with it here and now.

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There is nothing like spending time with someone who has dementia or Alzheimer’s to realize the value and the preciousness of the moment — whether it’s retrieving that distant memory and bringing it back to life — or treasuring the fleeting few seconds when it seems your parent or spouse might actually recognize and remember you.

Live blog Q & A on Tuesday, Sept. 30: Living with dementia

It’s not that the past doesn’t matter, or that the future should be dismissed as irrelevant.

It’s that when memory fades, the threads of relationships fray and slowly disintegrate and you find yourself with palms outstretched, trying to hold on to the tiny bits that connected you to the person you’re watching sink into an unreachable place.

All that matters right then is here and now.

READ MORE: Inside the world of dementia, as a painful reality sets in

It’s a lesson I have learned watching my parents go through the stages of dementia.

They are both in the late stages now. And while my guilt and sadness at being unable to help them and cure them never goes away, I have reached a point where I realize dementia has them in its grip and it’s not letting go.

But it shouldn’t be this way. Dementia and Alzheimer’s are not a normal part of aging.

The more than 700,000 Canadians who are consigned to this fate shouldn’t be forgotten or written off.

Nor should the thousands of caregivers — daughters, wives, husbands, sons — who are quietly caring for those they love.

For every case of dementia, there are about three caregivers.

It’s grueling and heartbreaking and unpredictable and can be dreadfully lonely and sad.

They need a voice, they need more support, and they need to know there’s a national standard of care so that whether they live in Toronto Ontario or Bonavista N.L., they can find quality, respectful, knowledgeable help and when it comes to it, respite care and nursing homes where staff are properly trained.

British Prime Minister David Cameron has said dementia now stands alongside cancer as one of the greatest enemies of humanity.

It’s a ticking time bomb costing the global economy more than $630 billion. Yet research into determining what causes it and finding a cure of it is achingly slow.

It needs to be on the national agenda in Canada. Only with leadership and strong voices will there be progress.

READ MORE: Dementia: What are the early warning signs and symptoms?

Our series of stories this week by our senior investigative correspondent Jennifer Tryon put a face on the disease.

The woman who quit her job to care full-time for her mom, and struggles with burnout and guilt.

The young woman who delayed going to university because her father – diagnosed at age 51 – needed to be cared for while her mom went to work to pay the mortgage.

The woman who – also aged 51 – has had to adapt her work environment to cope with her dementia so she can stay employed as long as possible.

We’ll also look at how some communities are becoming ‘dementia friendly’, adapting to a world where an increasing number of people will need help with everyday tasks so they can live and thrive in the community.

We don’t have all the answers, but we’re committed to telling the stories of Canadians who are living in the moment with a disease that one day – I hope – will be a distant memory.

© 2014 Shaw Media

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