Dr. Margaret Clarke was named one of the Top 100 Physicians of the Century by the Alberta Medical Association. Being her mother’s caregiver has presented a whole new set of challenges.

Dr. Margaret Clarke

July 22, 2023

After decades in a career spent delivering, researching, advising governments on, and advocating for innovations in, health care, I now find myself on a different sort of front line in the field. For five years, I have been serving as primary caregiver for my 96- year-old mother, Catheryn, in my Vancouver home. Prior to that, I managed complex palliative care for my father and mother for three years in separate homes.

In the twilight of a life spent raising two children, surviving a complex divorce, living with undiagnosed bipolar disorder until age 65, teaching thousands of children to ski, writing poetry and being a sh*t-disturbing activist for recycling and equity for female athletes, my mother now finds herself facing the toughest chapter of her life: lack of mobility, lack of independence and not enough activities to keep her still-sharp mind engaged.

I have become my Mom’s talent agent (for her intricate collages made from recycled paper and for her poetry) and activity coordinator with a legion of caregivers/strangers at the expense of my own career, health and life. I have isolated my friends and family from my well-camouflaged end-stage burnout — characterized by irritability and holding others to impossibly high standards. I have isolated myself from my past self-care skills of hiking and skiing and, in particular, my sense of humor.

I have sleep disturbance and heart disease, requiring multiple medications in spite of my healthy gene pool. Meanwhile, the system cries quietly with me and that debate always ends the same way: well, there’s always long-term care.

Sometimes, I consider my Mom’s care inadequacies to be my failure and often wonder who else feels this way. I have always been known, in my profession, as the kids’ doctor who can fix nearly anything. Why not my Mom? I know there are many Canadians just like me – but I am so isolated I cannot find them.

Through our time together, I’ve learned not only insight into my own aging, extraordinary patience, a whole new set of communication skills, and so much I didn’t know about her and myself, but enough to fill a syllabus for a course in caregiving and, above all, what caregivers need to do their jobs. McMaster University has just developed a course on the “soft skills” of being a family caregiver. I refer to it constantly.

On the policy front, Prime Minister Justin Trudeau and his government have rolled out many initiatives that have improved the quality of life for my family and patients.

For example, the AIDE Canada information portal, announced in the 2018 federal budget, has reduced the knowledge and resource gaps that patients and caregivers faced in the past. It is well known that lack of accurate information causes further inefficiency and dissatisfaction in an already stressed system of care.

The Save Lives – Keep Seniors at Home platform sponsored by the Seniors Liberals’ Commission will be even stronger if it includes ways to effectively support Canadian carers and their families.

In the United States, President Joe Biden signed an executive order in April titled Increasing Access to High-Quality Care and Supporting Caregivers, which addresses child care and later-life care as a combined responsibility and imperative critical to America’s “economic growth and economic security.” The order includes a range of directives across agencies and departments that will upgrade care for veterans, enhance job quality for long-term care workers and support family caregivers.

Eldercare models that keep seniors at home will only succeed if there is a companion strategy to keep their caregivers healthy and strong.

Canadians across all ages and communities have one thing in common; we often need care. Many of us — nearly 25 percent of Canadians — are family caregivers. During the COVID pandemic, patients as young as six had to become caregivers for their parents, grandparents and siblings.

Carers need curated information at their fingertips and available in all the places they travel with their loved ones. Instead, carers scramble through a variety of print and electronic resources that often do not provide the help they need.

Carers need financial support for their own self-care. This can be as little as a night at a hotel on a regular basis or financial assistance with a yoga or fitness course. The financial pressures are real and a large contributor to caregiver stress, even if you have a job and/or financial means.

Caregivers need prompting to take care of themselves and a dedicated funding stream for self-care is desperately needed. When we drop our loved ones off at a respite program, the carer time is often spent on essential duties and not on self-care. We know that caregiving stress can be reduced significantly by as little as one hour of self-care activity per week.

Elizabeth Blackburn, a Nobel scholar based in California, has shown that stress from caregiving increases chronic disease among caregivers. Her research shows that exercise, meditation and yoga can all reverse the DNA damage caused by chronic stress.

Eldercare models that keep seniors at home will only succeed if there is a companion strategy to keep their caregivers healthy and strong.

We need a pan-Canadian playbook that can help earlier in the caregiver journey. Although caregiving should involve families working together, the financial and care burden is often left to one or two family members.  Family dynamics are often inserted into the care milieu, leading to involvement of legal and social services. Ironically, elder law litigation in Canada has many high-quality courses and manuals that could be easily adapted for family caregiver use. However, they are only discovered when elders and their families default to litigation to resolve the substantial costs of caregiving.

To be sure, we have many excellent models in Canada that can be immediately drawn upon. Some of the best models come from Indigenous and immigrant Canadians who have never accepted our long-term care model for elders.

But there is no pan-Canadian information portal to coordinate and amplify these promising practices to keep Canadian seniors at home, and to provide their caregivers with healthy options based on a variety of models. A recent promising development in Canada is the formation of the Canadian Centre for Caregiving Excellence established by the Azrieli Foundation. (canadiancaregiving.org).

My mother said to me about writing this piece: “Please tell them seniors are not over the hill — we are at the top of the mountain”. Let’s learn from former US First Lady Roslyn Carter who established the first information portal and training institute for caregivers more than 30 years ago.

There are only four kinds of people in the world.

Those who have been caregivers.

Those who are currently caregivers.

Those who will be caregivers,

And those who will need a caregiver.

Dr. Margaret Clarke is a retired professor in the Faculty of Medicine, Departments of Pediatrics at the University of Calgary.  She is renowned for her research and advocacy in the field of autism and was the founding Executive Director of the Sinneave Family Foundation.  She cares for her 96-year-old mom Catheryn, at home in Vancouver.