In praise of the ‘invisible crutch’

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This article was published 22/10/2016 (3294 days ago), so information in it may no longer be current.

At 85, Viv Rees is settling into a new role — that of caregiver. His wife, Sheila, was diagnosed with vascular dementia in 2014.

“I tend to cope with days as they come, rather than look down the road at what might happen,” he said.

Looking down the road in Manitoba, the number of people with dementia is expected to increase every year until it peaks in 2038. Then, an expected 41,000 Manitobans will have dementia. Now, nearly half of all Manitobans (43 per cent) know someone who has dementia or Alzheimer’s and the loved ones who care for them.

It’s crucial those caregivers take all the help they can get so they don’t burn out, said Norma Kirkby, program director for the Alzheimer Society of Manitoba. “When they realize what a toll caretaking is having on them, recovery is a lot more difficult.”

The society is hosting its annual conference for caregivers next Saturday.

“We say to them ‘If you don’t look after yourself physically and emotionally, you’re not going to be able to go the journey,” Kirkby said.

It can last an average of eight years, but it can also be 12 years or more, she said. “You have to pace yourself and be knowledgeable about services you can use as the disease progresses,” she said.

“It’s exasperating at times,” said Rees, but never dull.

“She told someone she knew Donald Trump,” said her husband who is certain his wife has never met the Donald.

The changes he’s seen in Sheila have happened slowly, he said. “It’s very insidious.. gradual… More often now, I’m making a decision ‘Is it the old person speaking or the new person speaking?’ The two of them are there.”

Since the dementia diagnosis, they’ve moved into an assisted-living home. “Sheila was forgetting how to cook, and the stove was left on, things like that,” he said.

He said he takes breaks when he can. Friday mornings, he leaves Sheila for 45 minutes to join a singing group in their building. “I can leave her for a short while but not for a long time.”

On Thursdays, he goes for coffee with other caregivers while their spouses attend a support group at the Alzheimer society office downtown. “It’s our own little support group.”

On Monday mornings, a respite worker visits with Sheila for three hours, giving Viv time to himself. In the last four years, he’s taken up writing. His poem Thoughts on Losing Something about being a caregiver has been shared by the Alzheimer society.

In the last year, their daughter who lives in Winnipeg stayed with Sheila so Viv could attend the society’s daylong conference. It was a lot of information in one day, he said.

“The thing I appreciated most was ‘Look at all these people, and we’re all in very much the same position,’” said Rees. “Seeing all these people around me, I thought ‘Good Lord! I’m not on my own.’”

Rees said it reassured him about the future. “I know that there’s an escape route,” he said.

“There are agencies I can depend on that will react when I need it. It’s the invisible crutch.”

carol.sanders@freepress.mb.ca