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A 'thief' stole their future

Dementia dominates couple's lives

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Cathy Hurd and husband Tom Carter in their Transcona home. Carter's dementia has progressed very quickly.

MIKE DEAL / WINNIPEG FREE PRESS Enlarge Image

Cathy Hurd and husband Tom Carter in their Transcona home. Carter's dementia has progressed very quickly. Photo Store

After 16 years together, the title of "caregiver" has moved ahead of "partner" for Cathy Hurd.

Hurd's husband, Tom Carter, 58, suffers from frontotemporal dementia. It's a disease that is robbing Carter of his memories, his mobility and his independence and will eventually take his life.

The disease has stolen Hurd's future with her husband, their hopes of enjoying retirement with their grandchildren and dreams of quiet vacations together.

"Vicious. This disease is beyond belief," said Hurd, 51. "The best way I can compare dementia and all the pieces that go along with it, it's like a thief in the night. It steals your memories, your hopes, your dreams. Whatever you have and hope to have, it's all gone. We had plans for our retirement, like every other couple. That's gone now."

'Vicious. This disease is beyond belief' -- Cathy Hurd, whose husband suffers from dementia

As January has been designated Alzheimer Awareness Month, the Alzheimer Society of Manitoba is encouraging people to be aware of the signs and make early diagnosis a priority.

Carter was diagnosed in January 2013. He went from a vibrant, active, engaging man to a shell of himself in less than a year.

"His progression has been extremely fast," said Hurd, who works outside her home as a family-support worker and at home as Carter's primary caregiver. "Within a year, he has lost so much, it just blows my mind. He went from a man who can take care of himself in January (2013) to this January to being a man who needs 24-7 care."

He is forgetting the names of the couple's five children and 12 grandchildren so he uses nicknames he associates with them. He calls Hurd 'Grandma' since that's what he hears the grandchildren call her.

Carter cannot be alone as his muscles have been affected, causing an ever-present danger of falling. Recently, he has been choking on food -- his brain is not telling him to swallow so he must eat a special soft, minced diet.

"Eventually that's going to change and he'll have to be on a liquid diet," Hurd said. "There is no timeline with dementia. Both his neurologist and geriatric psychiatrist told me that he will probably be nursing-home-ready this year. I don't see that but it could be that I am in denial. It could be. But I'm not ready to let him go yet."

The couple, who have five children and 12 grandchildren, have had friends and family rally around them. Hurd has 55 hours a week of home-care assistance and has received valuable support from the Alzheimer Society of Manitoba where Hurd took the eight-week course called Experiencing Dementia. She said it gave her a starting point, resources and a treatment path.

But Hurd said nothing can prepare a family for the heartbreak of seeing a loved one deteriorate.

"We used to have sometimes nine or 10 of our grandchildren come on the weekend to spend time with us. That's all changed. They can't do that anymore and they miss that. I miss that," Hurd said, noting it is "too much stimulation" for Carter.

"When there's too much noise, it tends to shut somebody down who has dementia. It makes things more confusing for them. If there's a lot of noises, he quite often has to walk away from a situation."

Four of their grandchildren put together a book about how they feel about what is happening to "Papa."

"It makes us sad that Papa is forgetting things and that his brain is changing. Dementia makes us angry, sad, and makes our hearts feel like they are bursting into flames," they wrote.

Hurd said she tries to make each day as happy as she can for Carter.

"Everything that we do now is not to keep Tom in memories but to have something that I can hold onto after he goes. Because this disease will take him."

ashley.prest@freepress.mb.ca

Republished from the Winnipeg Free Press print edition January 9, 2014 A2

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