In Canada one in four people will suffer a stroke in their lifetime. My husband, Ron, had his stroke nine and a half years ago. Initially, he was completely paralyzed on his right side and came home from hospital in a wheelchair. For many years I resisted calling myself a caregiver. I consciously rejected the term, although I never thought to examine why. After discovering the Family Caregivers of BC website, I was intrigued to learn that not identifying one’s self as a caregiver is a common experience, although I didn’t learn why this is so.

In my own case I suspect that being as committed as I was to full recovery, I expected my once familiar world would some day be restored, that Ron would heal completely, and I would no longer be a caregiver. My condition was temporary. At some future point I would return to my writing career and to being Ron’s wife, Nicole and Owen’s mother, Iain and Jen’s mother-in-law, and Flora, Lochlan and Anja’s grandmother. All these identities I readily embraced. Admitting to being a caregiver meant facing up to a reality I wasn’t prepared to accept. A reality that meant Ron might be permanently handicapped and in continual need of my assistance.

I also rebelled against the reductionism I felt the term caregiver implied. It suggested to me that I now belonged to the legion of people who were no longer masters of their own destiny but slaves to the needs of others. Somehow identifying as a caregiver felt wrong to me. It said to me that the scope of my life had contracted. Whereas, in many ways, it had grown immeasurably.

Perhaps I also believed the word oversimplified Ron’s and my new situation. If I were a care-giver did that make Ron a care-taker? After all, he continued to write and edit, as he had done before, without my assistance. He still had a life independent of me. The first time I heard the term “care recipient’ was on the FCBC website. Weren’t Ron and I more like comrades in arms, both facing a challenge?

Today I am inclined to think that one of the reasons for my previous reluctance to identify as a caregiver was the fact that the work family caregivers do is unpaid or poorly paid. We live in a society where nurturing and giving isn’t appreciated. I hope that living through a pandemic will change this, that we will understand where our true value lies, and that the society we inhabit will embrace the universality of ‘giving care’.