Afolasade Fakolade was sitting in a doctor’s office with her parents when they got the news. Her 51-year-old mother had cancer.
The first reactions were shock and fear. Her dad was especially concerned, as her mom was the one who usually took care of everyone else.
Once those initial emotions passed, the family turned to more practical thoughts – “How will we cope?” A solution presented itself: Afolasade had recently graduated from a physiotherapy program. She thought her background and knowledge meant she was up to the task of caregiving for her mom.
“I was so wrong,” confesses the now Dr. Fakolade. “Nothing in my professional training as a physiotherapist had prepared me for the burden of being a family caregiver or its subsequent impact on my own physical, psychological, and even economic well-being.”
Dr. Fakolade ended up caring for her mother for three years in person with remote caregiving duties for another two years afterward. She couldn’t work during those first three years and had to help her mother through major surgeries and post-operative complications.
That fateful doctor’s appointment was 15 years ago. While Dr. Fakolade’s mother’s health is now stable with a care plan in place, a growing number of Canadians are becoming caregivers for sick or older family members and providing ongoing support whether for a season or the balance of the family member’s life. In the years to come, it’s expected that one in two Canadians will have caregiving responsibilities.
“Nothing in my professional training as a physiotherapist had prepared me for the burden of being a family caregiver or its subsequent impact on my own physical, psychological, and even economic well-being.”
Dr. Fakolade’s experience led her to pursue further studies in rehabilitation science, and she now teaches at Queen’s. Inspired by her own experiences, her research focuses on ways to help preserve the well-being of caregivers.
While caring for caregivers may seem like a straightforward idea, an aging population and shrinking family size make it a critical one. Canadian caregivers provide 5.7 billion hours of care in a year – work that can’t be absorbed by the primary care system.
What can be done to keep caregivers in good shape and stave off a caregiving crisis? Technological advances have provided connective technologies such as social media as well as virtual meeting platforms that both reduce the burden of caring for someone and help caregivers find support and empathy from other caregivers with similar challenges. A website directory of useful resources for caregivers, ranging from discussion groups to publications to full courses, is available from the Canadian Centre for Caregiving Excellence.
While addressing a knowledge gap is helpful, there are also hard costs to caregiving. Dr. Fakolade and her colleagues also want to see the federal government step up with tax credits that help caregivers offset their caregiving expenses.
And she acknowledges there is work to be done in bridging different cultural perspectives on caring for parents or those who are ill – viewpoints that mean some caregivers do not report or consider their own needs or advocate for themselves.
But, beyond computers, credits, and cultural awareness, she believes better care begins with better education and training for those who become responsible for a loved one coping with sickness.
“We act like it’s OK for them to assume this role without adequate preparation, without access to the tools that they need to succeed, and without knowing how to be well,” Dr. Fakolade says. “Our society must develop the capacity to do better. Caregivers are as worthy of care as their care recipients.”
