“My life is different from most people’s.”
That’s what Mandie, a young mother of three in Kelowna, says about her round-the-clock role as a caregiver. Life is different for Mandie because her middle child, Moses, has both autism spectrum disorder and epilepsy. Her youngest, Rose, has cerebral palsy. The care of her special-needs children is all-consuming, so there isn’t much time left to focus on Joey, her eldest and only healthy child.
“You can only offer your most,” says Mandie. “You can’t offer more than your most.”
Mandie’s story is one of 23 powerful mini-documentaries told at the new site www.storiesforcaregivers.com, a critical resource and support network for the millions of caregivers across Canada.
An extraordinary number
Stats Canada pinpoints the number of caregivers at 8 million and growing rapidly. These individuals, mostly unpaid, take care of aging and ailing parents, children, friends, and neighbors.
As Stories for Caregivers illustrates, caregivers tend to fade into the background, losing their identity and self-worth, as they spend so much energy focusing on others. The website offers resources and a discussion board for caregivers to interact with one another about their challenges and triumphs.
“People who are taking care of their family and friends often don’t recognize that they are in a caregiving role,” says Dr Yvette Lu, a Vancouver physician who hosts House Call, one of three video series under Stories for Caregivers umbrella.
The 2016 Carers UK State of Caring survey showed that:
• 54% of family caregivers took more than a year to recognize their caregiving role
• 24% of caregivers took more than 5 years to self-identify as caregivers
• 9% took more than 10 years
Lack of recognition resulted in delayed access to resources and support, and the survey reported increased negative impacts on physical and mental health, finances, and social relationships.
Lu and Brian Wideen, whose Vancouver-based Coup Company recently created www.storiesforcaregivers.com with participation from the Telus Fund, hope Canadians will visit the website, sign up, and participate in its growing community. Whether it’s for support or simply to learn about the challenges so many people are experiencing while they’re taking care of others.
People who aren’t caregivers now may be caregivers tomorrow, so the site is also for them.
A report by the Seniors Advocate of British Columbia found that 31% of caregivers were experiencing distress. By providing a place for caregivers to connect to resources and to each other, hopefully some of their stress and social isolation can be eased. Hearing other caregivers’ stories, and the solutions they have found, may also help caregivers better deal with their own challenges.
—Jonathan McDonald
Stories for Caregivers
Additional reading
Carers UK. www.carersuk.org/for-professionals/policy/policy-library/missing-out-the....
Office of the Seniors Advocate of BC. www.seniorsadvocatebc.ca/osa-reports/caregivers-in-distress-a-growing-pr....
This posting has not been peer reviewed by the BCMJ Editorial Board.
