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TORONTO – They come from all walks of life, young and old: millions of Canadians who are unpaid caregivers for their elderly parents, children with disabilities or a brother or sister with a chronic illness. Yet, a survey reveals that many of them struggle, often in isolation, to play a vital role in not having enough support from the health system.
The Ontario survey of 800 caregivers aged 16 and older, released by the Change Foundation on Thursday, paints a picture of people who are often unannounced in a role for which they are not generally trained and which has major effects on their physical health. mental health, relationships and career paths.
"Caregivers provide the vast majority of care that occurs between appointments with a doctor or between two hospital stays or different interactions with the health system," said Christa Haanstra of the Change Foundation, an independent think tank on health policies. to improve the experience of patients and caregivers.
"There is a lot more home health care, largely provided by caregivers," said Haanstra, noting that informal caregivers are often invisible in the health system, as their contributions are unrecognized and unrewarded.
"We really think of them as the glue that keeps the health system together."
The online survey, conducted in May by survey firm Pollara Strategic Insights, found that caregivers generally appreciated the time spent with loved ones and believed that they improved their lives.
However, 61% admitted to having accepted the role because they thought they had no other choice, many feeling sometimes trapped, helpless, frustrated and overwhelmed.
The survey found that 36% of caregivers were depressed and 33% resented their role. Nearly half of those surveyed said that care had affected their ability to spend their time, travel and socialize.
One-third of those surveyed reported financial costs badociated with the provision of care, including personal expenses, absence from work and reduced career prospects. Eight percent lost their jobs due to caregiving responsibilities.
"Caregivers provide care for almost everyone – siblings, parents, and children – and cover all kinds of illnesses," said Haanstra, a young girl who cares about both her aging parents and their loved ones with chronic diseases.
"Clearly, the largest group deals with people with aging-related health issues, including Alzheimer's and frailty.
"But we are also talking about providing care for people with cancer, disabilities, mental illness, multiple chronic diseases and acute illnesses, injuries or accidents," she said. noting that approximately 28% of Canadians over the age of 15 have badumed the role of homemaker.
Stephane Alexis, 25, from Orleans, Ontario, near Ottawa, is one of those. He helps his parents take care of his younger brother, Torence, who has cerebral palsy and non-verbal language.
"He is completely dependent, he needs help to feed, change, and even go to bed," Alexis said of 22-year-old Torence. "It's a pretty heavy type, so there's a lot of work to be done."
Alexis, who attends a private photographic arts school, helps after clbades and weekends to the needs of his brother, but their relationship goes far beyond.
"I love my brother very much, I like spending time with him, he's funny, he makes me laugh."
But Alexis admitted that even being a part-time caregiver has a cost. He is often exhausted, has little time to socialize with friends and has had to put some life goals on hold.
"I was planning to move (from the family home) fairly quickly, but I feel I can not do it, I can not leave and let my parents get by on their own."
He is frustrated by the lack of support from the health system: the family receives only 15 hours of help a week from two social service agencies.
"It does not seem like there's really funding for home care – they're leaving you in some way," said Alexis, who believes that his brother's quality of life is "better at home" only in a residence financed by public funds. for people with special needs.
"Why not use some of the money you invest in a home and use some of that money for home care?"
For Don Mahood, frustration with the health care system began when he attempted to make a diagnosis for his wife Mary Charlotte, who was suffering from increasingly serious memory problems since several years, forcing the RN to leave her job.
"I tried to get her to diagnose the doctor with difficulty," said Mahood, 76, of London, Ont.
"You would go to the doctor and say that my wife is suffering from dementia, that she would give her a test and talk to her for maybe 10 or 15 minutes and that she was fine." Anyone with the disease Alzheimer's, especially in the beginning, can really hide it. "
Mahood was eventually referred – a year later – to the Aging Memory Clinic in London, where doctors confirmed in 2012 that his wife had Alzheimer's disease.
For the next six years, Mahood was Mary Charlotte's caregiver, 24 hours a day, until his wife, over age 50, was transferred to a long-term care facility. about a year ago.
"In the end, I had to dress her, bathe her, I had to do everything, she could not brush her teeth," he said. "When I look back, I do not even know how I did it myself.
"I was exhausted."
Although caring for his wife was a work of love, the illness ended their plan to spend part of their retirement in Florida. Mahood also had to abandon activities such as playing hockey, and his social life was disrupted by longtime friends who went astray.
"Then my friends became others who were going through this … I would never have survived if I had not been part of support groups, it really saved my life. in a sense."
Haanstra said such stories, as well as the results of the survey, showed that the health system needed to do more to support health care providers and make it easier for them to access existing services.
"They are ready to do it, but we can not send them home without support, without information and we hope that they will succeed."
For more information, visit: www.changefoundation.ca/spotlight-on-caregivers
– Follow @SherylUbelacker on Twitter.
Sheryl Ubelacker, Canadian Press
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