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Caregivers' voices: families can find themselves frustrated, alone in dealing with dementia

Isabel Kelly with her children Catherine and Eddy Kelly in March of 2015. Catherine and Eddy and their spouses have been sharing the care of Isabel since her dementia diagnosis in 2009. - Nicole Bond Winters
Isabel Kelly with her children Catherine and Eddy Kelly in March of 2015. Catherine and Eddy and their spouses have been sharing the care of Isabel since her dementia diagnosis in 2009. - Nicole Bond Winters

Seeking support and sharing stories help families through dementia journey

There have been moments when Joanne McNutt wished her mother Marie Kacevychius had cancer instead of dementia.

“With my dad with cancer, the appointments were there, the doctors were there, the care was there, the homecare, everything,” she says.

“Everything was a roadblock for my mum.”

When Kacevychius was diagnosed with dementia just a few months after her husband of 58 years died, her children felt they were on their own.

“This dementia is a car wreck,” McNutt said. “We had no knowledge.”

She was steering her mother’s care, trying to work full-time and stay up all night with Kacevychius, who paced for up to 24 hours a day, and looking for a new doctor after transferring her mom from Sydney to Truro, N.S.

“You’re just going on adrenaline.”

McNutt took six months of unpaid leave. Even after she “hit the jackpot” with a placement in a nursing home, the caregiving continued. McNutt still checks on her mother at least once a day, monitoring her care or calming her with a phone call.

“I will always advocate,” McNutt says. “She advocated on my behalf for so many years – for all five of us.”

Caregiver reversal

When Isabel Kelly stopped volunteering in her parish, it took 26 people to replace her. The former Catholic nun and school teacher had raised two children in Halifax, N.S., and Harbour Main, N.L. As the youngest of 13 children, she spent years caring for first her elderly parents and then one of her sisters.

“She really had a life of a caretaker,” daughter Catherine Kelly says. “It was who she was at the core.”

For the nine years since Isabel’s diagnosis, Catherine and her brother, Eddy Kelly, have been caring for their mother. At first, Isabel divided time between Eddy’s home in Beechville, N.S., and Catherine’s in Ontario.

“She flourished,” Catherine recalls.

When Isabel could no longer fly back and forth comfortably, Catherine took her back to her family home in Newfoundland, where she still lives with Catherine, her partner and two young children.

Catherine and Eddy speak of their mother, now bed-ridden, with love and patience – but they are mindful of the toll caregiving takes.

Eddy found social opportunities for his mother earlier in their journey.

“There’s a great benefit for the loved one with dementia,” he says, “but it also gives the caregiver a mental break.”

Sandwiched

Like many adult children, the Kelly siblings are taking care of their own kids and their parent.

“The week Xavier started to walk was the week mom started to stumble more,” Catherine says. Her daughter was in the womb when her mother came close to dying almost three years ago.

“We’ve been living this intense circle of life.”

As an adult grandchild, Jessica Rubia sees what her father and grandfather do to support her grandmother, Ruby McGinn.

“It is very hard on my pop and on my dad,” she says from Corner Brook, N.L. “My dad will go in on the worst of days, when she’s really bad.”

Rubia wishes she knew more about her grandmother’s diagnosis in order to support her family.

“A lot of people talk about a cancer, about diabetes, but no one ever really talks about dementia.”

Diagnosis

For Sandra Gallant*, it was just her and her father when her mother Helen Arsenault* was diagnosed.

“It was really awful,” said Gallant, an only child who was 30 at the time. “You anticipate your parents aging and you needing to help them. It just happened much sooner in my life than I anticipated.

“Just knowing who to contact” is challenging, Gallant adds. “It just became my full-time job and I have another full-time job and children. It became my whole life for a little while.”

Helen was adamant she was fine, so even getting an assessment was a problem.

“The wheels were coming off our bus pretty bad.”

Dementia may be spotted quickly – after a stroke like Isabel’s or the loss of a spouse like Marie’s, something shifts – or the indications may go unnoticed.

“There were signs early that we missed,” Roger Surette says of the period before his late wife, Winnie Surette, was diagnosed at 63, when she was still working full-time and an active volunteer in Yarmouth, N.S.

“She was quite smart and she covered.”

Linking up

Once there’s a diagnosis, McNutt and Gallant urge other families to contact their provincial Alzheimer Society.

They listened to me bawl,” Gallant says.

“They knew the doctors, the clinics,” McNutt says. “If I didn’t have them, I don’t know what I would have done.”

Linda Bird, director of programs and services with the Nova Scotia society, says the organization can help. 

“It’s a complex disease. In the early stages it affects cognition and judgement and reasoning and as it progresses through, people become more dependent on the people around them,” Bird says, encouraging families to plan. There are details to take care of: finances, power of attorney, arranging time off work or leaving a career to become a carer, which can impact seniority or time to retirement.

The society’s new First Link program can connect families with information on all available services.

“You have to be willing to accept help,” Surette says, looking back at his journey with Winnie, who lived at home until just three weeks before her death last August. “Even if it’s only for a little bit or to get out, or you’re going to be no good.”

*Name changed by request.

Resources 

Alzheimer Society of NL 1-877-776-0608

Alzheimer Society of NB 1-800-664-8411

Alzheimer Society of PEI 1-902-628-2257

Alzheimer Society of NS 1-800-611-6345

Caregivers Nova Scotia

Free download of Atlantic Nights Ebook

As part of Alzheimer’s Awareness Month in Canada, SaltWire is making available a free download of award-winning Canadian author Russell Wangersky’s book Atlantic Nights: They Lived 1,000 Lies. The novel, which first appeared as a daily online serial, tells the story of one family’s journey as they cope with their mother’s dementia.

Download a free copy of Atlantic Nights. 

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