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As the population ages, who will care for the caregiver?

By Michael Swan
The Catholic Register

07/27/2016

TORONTO (CCN) — By 2030 a quarter of Canadians will be over the age of 65. Over the next 50 years the number of us over the age of 80 will more than triple to somewhere north of five million.

Old folks get sick. They struggle with physical and psychological infirmities. Eventually, somebody has to take care of them.

Most care is not delivered by nurses, doctors or other health care professionals. Most of it happens at home, in the family. Most caregivers are people who have careers, marriages and often growing children of their own.

If nearly 30 per cent of Canadians are already caregivers, and the only way that number projects into the future is up, then caregivers are not just the future of Canada’s health care system. They are woven into the fabric of our society.

Caregiving — how we do it, how we support it, how we value and celebrate it — defines the kind of society Canada is and will be.

Elizabeth Hill isn’t thinking about Canada or its social fabric when she heads to her sister Dorothy’s house each morning to help wake up her mother Lorraine. 

“So my mum, she’s at the stage with Alzheimer’s where she needs a lot of cueing,” explained Hill. “She doesn’t really know whether it’s morning or night. But if you say, ‘It’s morning, let’s get up and get showered,’ then she can kind of start in that way.”

Elizabeth works in the technology department of a real estate company, while her sister Dorothy manages the office for a boutique accounting firm. The sisters, both in their 50s, have their own families.

“We’re able to go to work because we have caregivers who come in four days a week,” said Elizabeth. “Basically, both of our employers understand that we will get our jobs done but sometimes we do have to drop everything to get to our mother.”

Personal support workers arrive before 9 a.m. and stay long enough to prepare lunch for Lorraine in her in-law suite in Dorothy’s house. On Wednesdays, Lorraine goes to the adult day program for patients with dementia at Toronto’s Providence Healthcare. The sisters also turn to Providence for respite care when they need a couple of days to themselves.

“The ADP program at Providence is God-sent. It is a blessing to our family and to our mother,” said Elizabeth.

Once a week Lorraine is at Providence overnight. Elizabeth and Dorothy are using the Providence experience to get their mother ready for life in a long-term care home. Lorraine has been on a list since February. It took more than six months of sorting through options and filling out applications just to get her on the list and there’s still no telling when she will move on to full-time institutional care.

If her days at Providence are any indication, Lorraine will adapt well to a nursing home. She comes home from Providence generally happy and obviously well cared for.

“She can walk better, go up and down stairs better, because she’s been active during the day,” said Elizabeth. “We’ve noticed that she’s very happy and tired. So she’s had a nice, busy day.”

A side benefit of the Providence program has been the opportunity to talk to other caregivers who face similar challenges, Elizabeth said.

“It was so nice to just sit and have somebody else who is in kind of the same situation and have a conversation,” she said. “Everybody is helping the other people’s loved ones when it’s a bit tricky. Those are people who walk in the same shoes.”

Getting caregivers together to share their struggles and learn from each other is one of the major goals of St. Elizabeth Healthcare’s new Elizz service. Six months since its launch, Elizz.com is drawing 68,000 unique users per month. Through the website and a toll-free phone number, Elizz offers caregivers advice. The service can arrange for nursing, dieticians and personal support workers and helps caregivers measure their own levels of stress and anxiety.

“All things caregiving I guess is what you might call it,” said St. Elizabeth Healthcare senior vice-president and chief clinical executive Nancy Lefebre.

The idea for the service to caregivers has been brewing within the Catholic home health care organization for years.

“We wanted to focus on caregiver knowledge and empowerment,” Lefebre said. “Caregivers also wanted services — everything from in-home services to virtual coaching services to an ask-the-expert kind of service — so that they could be receiving education and care when they wanted it.”

Somebody has to care for the caregiver.

Retired math teacher Raffaella Korre has used Elizz to connect with a support group of other caregivers. Korre has been a caregiver for 35 years — for more than 20 years with her husband as he battled brain tumours and now with her 87-year-old mother Maria whose dementia has deepened since a stroke a year ago.

Korre comes across as confident, knowledgeable and easily in charge. Her Mississauga home is immaculate. She knows the ins and outs of Ontario’s Community Care Access Centre system for rationing out home care. She’s part of St. Patrick’s Parish and has been living in the same neighbourhood since she was a girl.

She wouldn’t seem to need a formal support group or much guidance about balance in her own successful, well-ordered life.

“I struggle with the guilt and the frustration,” she said. “Every day is an emotional roller coaster ride. On the one hand I think, ‘Yeah, darn it, I can’t just pick up and go.’ And then I think, ‘How dare I think that, because look at all she’s done for me. And she’s a human being and look at what she’s feeling and going through.’ I’m sure she feels frustrated by the fact she can’t do things anymore. So it’s that up and down between the guilt, the anger, the frustration. And you go back and forth all the time. There are no easy answers. Trust me.”

Caregiving is a tradition Maria passed down to Raffaella. When her husband developed liver cancer, Maria quit her job at a commercial laundry to take care of him. After he died, Raffaella’s husband developed brain tumours.

“She helped me for many, many years when my husband was sick and she took care of the boys — my two sons who are now adults — so that I could continue to work and keep the family going,” said Korre. “I’m not about to turn my back on her, to say that didn’t mean anything. It meant a lot.”

Though a nursing home with its full-time, professional, round-the-clock care, might seem a good option, it won’t work for Korre and her mother.

“All her life she had said, ‘Don’t put me in a home. If you put me in any kind of nursing home I will be dead in three days.’ She’s very much a family person . . . she always wants to be here, at home, with us,” Korre said.

Which leaves the two women at home looking ahead to Maria’s eventual end.

“Knowing what the final outcome will be is very difficult to deal with on a day-to-day basis,” Korre said. “The most difficult part is dealing with the whole concept of her eventual death. The emotional wear and tear that that causes. Interestingly, I’ve tried to discuss it with her. She’s afraid of dying. I think most of us are.”

Maria’s strong Catholic faith and her Sunday mornings at prayer in St. Patrick’s are a comfort to her, but they don’t make death any less frightening.

“Because she’s not at peace with it, I’m emotionally distraught over how it’s all going to play out,” Korre said. “Not that I can predict, not that it’s in my control. When her spirit is ready, her spirit is ready. But still the emotional wear and tear is there.”

At St. Elizabeth Healthcare, that’s the kind of emotional wear and tear they try to address — whether through Elizz.com or their traditional in-home care.

“That’s always a component,” said Lefebre. “Recognizing that spiritual health and well being is a part of one’s overall life.”

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