Among people over 15 years old in Canada, 1 in 4 are family caregivers, but their experience is not valued.

I was half a century old when someone gave me a little book as a door prize. It had a bright white cover with the image of an unlit match. The book was written by a guy I’d never heard of, Canadian Malcolm Gladwell. I later learned more about him. He is a social change-maker for the masses. In his first book, The Tipping Point, he describes how little things make a big difference. Like lighting a match. But change is only ignited when the culture is ready for change. That book changed me.

We talk now about ideas “going viral” as if we always thought about them that way. It was Canadian guru Malcolm Gladwell who coined the concept. But what does it take for an idea to go viral? In particular, how might the idea apply to my passion project — family caregiving for the frail elderly?

That brings me to this article. I submit it as a comment to the disrupting thought piece by Donna Thomson and Vickie Cammack. The Policy Options article is called “Recognizing the Worth of Natural Caregivers.” It came to my attention through one of the best viral ways of bagging the buzz, Twitter.

In the evolution of how we think about providing care at the end of life, the tipping point will come about as the result of three factors. First, there has to be that pinch, that societal discomfort in knowing that the old shoe doesn’t fit. We have to want change. Second, it takes researchers of every sort inventing new technologies, devising new organizational set-ups, or imagining new ways of thinking about the problem, to enable us to move forward. Yet most of what these folks produce is wildly inaccessible to the regular Joes and Janes who already have too much to learn about or tune into, and too little time. They need interpreters, people Gladwell calls mavens. These people get it about the problem to be solved. They sort through the statistics and footnotes and fine print to find the nuggets, the gems that connect esoteric thought to ideas that are meaningful to the rest of us. The mavens can’t wait to disseminate their ideas. But they can’t do it alone. They need another kind of person, the kind Gladwell calls the connectors. These people grab the implications of the research and have the skills to pass the word along. They run with the new knowledge through vast but disconnected networks. And those networks pass it on…and on…and on.

I read The Tipping Point in one excited session in 2000. It was the same year that my personal family-caregiving journey was beginning, I knew when I closed the book that I would be a connector if I had the chance.

Fast forward. Since that Malcolm moment, I’ve been busy with a job that, looking back, has had three parts. The first part was the actual decade of doing — being a fully engaged and intentional caregiver, a “daughter-at-a-distance.” I was working with my twin sister, who was the caregiver “daughter-on-deck,” nurturing my declining parents in Calgary, Alberta. Together we pulled out all the stops to be there for our parents as they went through an agonizing but wonderful period to the end of their lives. I’ve called the period “the dwindling time.” When my caregiving decade was over, the second part of my job, Gladwell groupie that I was, was to take a crack at being a maven. I wrote a memoir reflecting on the challenges along the way that we beat, and the ones that beat us; all the changes in us; and how we viewed the world in new ways as a result of the lessons we absorbed. I collected all our treasured sorrows into vignettes of caregiving at the edge of life in a book called The Dwindling: A Daughter’s Caregiving Journey to the Edge of Life.

The last part of that journey is my present passion. Perhaps it will be the most lasting element of it. One in four of us aged 15 and over in Canada are family caregivers, after all, and each has a story. Death stories are like birth stories. They are unique. Yet, at their core they are much the same. That commonality is exactly what makes my project matter. In our personal encounters with the dwindling, we are not alone.

But family caregivers are a humble lot. They rarely speak out about their experiences, and they are especially reticent to talk about what they have learned along their journey. Perhaps when the journey is over they hanker to get back to the life they put on hold, and they just don’t have the time or the emotional juice to reflect and share. Or, worst of all, perhaps they have felt so patronized – that their role as caregiver was so trivialized – that their self-esteem as experts in the field of family caregiving has shrivelled to nothing. This is the problem that I – Gladwell’s gadfly – am setting out to swat at. If we allow the hole left by family caregivers’ unshared knowledge to remain, we will miss essential factors for success in crafting better end-of-life care.

I call this personal passion project “100 Conversations with Caregivers.” I am speaking at libraries, caregiver support groups, seniors’ groups, interest groups in churches, and Rotary clubs. I also have ongoing caregiver conversations online, and hope to write more articles like this one. Though narrative research has a reputation in some quarters as being weak-kneed, that’s what I’m standing on. My main question will always be the same: “In your knowledge as a family caregiver, what does quality in end-of-life care look like? feel like? lead to?” I want to know what matters most to the people who have mattered most through that most significant passage to life’s end. I hope I can patch together what I learn into a form that speaks truth to power. That is my goal.

There’s a great deal of progress happening now. A private member’s bill, Bill C-277, to create a palliative care framework, has passed third reading and is headed back to the Senate, with support from all parties. The Bill would require the health minister to convene a conference with provincial and territorial governments and palliative care providers within six months of the Act coming into force to develop a framework that will enable all Canadians to have access to palliative care. It would require the minister of health to table the framework in Parliament within a year and make it public shortly thereafter. This is wonderful news, and suggests that the virus of change has already begun to infect our lawmakers.

Thank you, Donna Thomson and Vickie Cammack, for ripping the shroud off the taboo that allows the formal care system to add to the burden of the informal family caregivers, without a second thought, it seems. Thank you for seeing family caregiving as a resource with limits. Most of all, thank you for seeing the riches that the whole of society will gain through well-supported family caregiving.

Caring needs to become a social movement. Supporting and valuing family caregiving is crucial. So it’s time for a pandemic of change on this issue. Can we begin to nudge our cultural zeitgeist that surrounds caring? If we work together, I think we can. So let’s light that match and keep it burning.

Photo: Shutterstock/By Tom Wang


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