WHO WILL CARE FOR THE CAREGIVERS?
Second story in a series looks at exhausting role for loved ones
Hélène’s bed is rigged with an alarm to prevent wandering, and on this particular night it had already gone off five times. The Montreal woman, 71, is agitated and prone to leaving her bed at night, a symptom of her dementia. Each time the alarm rang, her husband tucked her back into bed — but the sixth time, he wasn’t quick enough. She fell on her face, broke a tooth and bruised a cheek.
When Hélène broke an arm in December after a misstep on her stairs, the family placed her in a private long-term residence. But Hélène felt like she was in a prison, and she was there for less than a month. Now she is back home, with the stairs gated. But she can’t be left alone.
There’s so much Hélène has forgotten, like what chairs are for. And if no one stops her, she’ll try to stand on the backs of sofas. Just last week her daughter, Isabelle, found Hélène kneeling on a glass coffee table, and her heart stopped as she imagined broken shards hurting her mother.
Isabelle’s father fell into a deep depression as the demands of caring for his wife escalated last year. The challenges of eldercare led him to go on disability leave in January, retiring prematurely from his prominent position in the Quebec justice system — a job he loved. In order to maintain his professional credibility, the family agreed to speak to the Montreal Gazette on condition that their last name not be published.
“My father was not fit to work. He couldn’t concentrate, he couldn’t read the newspaper,” said Isabelle, who is a director of human resources. “It’s been hell. It’s been difcult for the whole family. I went through a depression. My father is still in it.”
Isabelle and her father are part of a hidden army of 8.1 million Canadians who play a crucial role in the health system by providing unpaid work as informal caregivers, looking after a family member or friend with a long-term health condition, disability or age-related needs. That’s more than one-quarter of the population over age 15, many of whom are women juggling child rearing, caregiving and paid work. Nearly half of those caregivers, 48 per cent, are assisting elderly parents at home.
Their duties include bathing, dressing, feeding and grooming.
They shop, cook and clean. They provide round-the-clock surveillance for individuals with dementia. They provide transportation to and co-ordination of medical appointments.
They have learned to perform routine health chores such as giving injections, changing surgical bandages or cleaning breathing tubes.
But as our population ages, is relying on family caregivers a sustainable strategy? Experts advising government on public policy say it won’t be sustainable without providing this invisible army of caregivers with community support, more home care services, employment incentives and financial compensation.
Hélène’s condition began declining rapidly four years ago.
“I’m not equipped to be a caregiver — how to deal with it, how to react, what to do,” Isabelle said. “My mother is a smart woman, and she was able to compensate until it became painfully obvious. She hid it well. But now my mother can’t do anything on her own. She has trouble holding a fork and walking. She can’t get dressed or eat.
“It’s a horrible illness from any angle. You have no idea unless you go through it. No one can relate.”
The family has decided against placing Hélène in a nursing home, because as a frequent wanderer, she would often be restrained in a chair or bed, living in a closed unit with locked doors.
As her father became a full-time caregiver, Isabelle interviewed and privately hired a roster of home care workers, to come in for several hours daily.
“It was very hard because my mom resisted. She’d throw them out. Now, she’s resigned herself to it.”
Isabelle says she lives with a constant knot in her stomach — a knot of responsibility and sadness.
The toll on families caring for seniors with diminishing capacities is immeasurable: out-of-pocket expenses, income losses, stress, isolation. Society isn’t ready for the growing demands of caregiving, Isabelle warns. Experts agree.
A 2012 Statistics Canada report pegs caregivers as “integral” to maintaining the health of seniors living at home and reducing demands on the system, especially as baby boomers transition into their senior years and develop chronic and age-related illnesses en masse.
A 2015 report by the non-profit Caledon Institute of Social Policy describes Canada’s caregivers as “invaluable and invisible” in the current landscape — invaluable for delivering essential services, and invisible for providing these services at no pay.
Also on the “invisible” side, their concerns aren’t taken seriously, the report says. Unpaid caregivers provide more than 80 per cent of the care required by individuals with long-term needs, contributing more than $5 billion in unpaid labour to the health system annually.
One economic report tallied the overall costs for care given by Canadian family caregivers looking after seniors age 65 and older at $25 billion per year, based on hourly rates for professionals (at 2007 rates).
Experts say support for caregivers in Canada is woefully inadequate — a patchwork of services rife with geographical inequities in access and quality of care, especially for the one in 10 caregivers who spend more than 30 hours a week caring for seniors with complex needs.
As a result, many caregivers are stretched beyond their capacity, reporting high levels of stress, depression, and doubts about their ability to continue providing care.
Quebec ombudsman Raymonde Saint-Germain published a scathing report, made public in September, lambasting the provincial government for failing to inject $150 million into home care, despite a “growing, crying need” to improve the system in the face of a growing aging population. Quebec spent $714 million on home care for seniors in 2013-14.
Saint-Germain pointed to “a yawning gap” between what’s needed and what’s actually available in a system plagued with cuts and reduced services, long wait times and caregiver burnout.
In China, parents can sue their children for care. Facing an increasingly older population after decades of the one-child policy, China in 2013 passed a law forcing offspring of parents older than 60 to visit their parents “frequently” and make sure their physical and spiritual needs are met.
Relying on adult children as caregivers of the future isn’t a good strategy, because the supply of potential caregivers is dwindling while the demand for care is increasing, says Dr. Janice Keefe, director of the Nova Scotia Centre on Aging.
In a presentation to Canadian parliamentarians in 2012, Keefe noted that failing to support caregivers will cause them to put their aging parents into public-sector care prematurely, which will end up costing governments more. She recommends a range of tax and employment benefits, plus financial compensation along with public services to help support caregivers.
According to the Canadian Caregiver Coalition, 1.6 million caregivers took leaves from work in 2013; nearly 600,000 reduced their work hours; 160,000 turned down paid employment; and, 390,000 had quit their jobs to provide care.
This is equivalent to $1.3 billion in lost productivity per year.
A project by the coalition and its partners identifies four pillars to support caregivers: access to services, work accommodation, financial compensation and public awareness.
Caregivers in the workplace “can no longer be ignored,” said psychologist Ella Amir, executive director of AMI- Québec, an expert on caregiving in the context of mental health for more than 25 years. Currently, 6.1 million employed Canadians, or 35 per cent of Canada’s workforce, are family caregivers.
“It’s huge — one in three workers is also giving care to someone.”
The federal government pledged in 2014 that it would launch the Canadian Employers for Caregivers Plan to help caregivers and employers find a balance. Details had yet to be announced when the Conservatives were defeated in the Oct. 19 election.
“Yes, more home care is important, but so is flexibility in the workplace,” Amir said. “Either you are a caregiver today or a care receiver tomorrow.”
Caregiving is also a huge concern for adults who live far away from their aging parents.
Janet Spiegel didn’t want her father to go into a long-term care facility. So she flew to Montreal and drove him to Los Angeles to live with her.
“He wouldn’t have survived on his own,” Spiegel said.
The move ended a two-year-long cycle of worry that began when Albert Spiegel, 85, had a heart attack while taking his dog to the vet. The resulting surgery, complications, rehabilitation and medical crises meant that Janet and her sister Susan, who lives in Vancouver, found themselves having to drop everything to rush to his bedside for weeks at a time.
In February, when a routine colonoscopy ripped into their father’s bowels and led to an emergency operation, Janet and Susan took turns flying to Montreal to care for him. The toll has been tremendous. “I couldn’t even describe it,” said Janet, who is “sandwiched” between caring for her father and her children.
“When you have a new baby, you’re devastatingly exhausted, but it’s at the beginning of life. A joyfulness in watching a life develop gets you through this time where you’re not sleeping and eating. You have this promise of life.”
But in her father’s case, “I have that same exhaustion, but no joy. Just sadness. It’s going the wrong way.”