Carepartner vs. Caregiver

Chapter 9 of our book Identity Theft: Rediscovering Ourselves After Stroke is titled “Stroke is a Family Illness.” In that chapter, we talk about the impact one person’s stroke has on an entire family. We know that the impact is not only due to changes to our activities, but also the disruptions to our emotional stability and our sense of self to our identities.

I touched on our use of the phrase “carepartner” in our October 2020 column “Did we have a stroke?” Because we are often urged in our work with Stroke Onward to raise the challenges faced by this group, I am giving it a bit more attention here.

Clearly, not all survivors have a family member – partner, child, parent or otherwise – available to lead their care support. When I use the term family, I refer to biological and/or chosen family. And for those who do not have either, we recognize how much more difficult that may make your recovery.

Why “carepartner?”

We have spoken with many people about our choice to use the phrase “carepartner” in lieu of “caregiver.” Many, if not most, have quickly embraced it for themselves. But not everyone has. It may not be the right choice for all. I hope that sharing our path to this choice may be helpful to some.

Agency for Debra

About a month after Debra’s stroke, when she was still in the ICU, she had no voice but was very alert and aware. A few doctors and nurses providing care spoke directly to me at her bedside about her condition and care without any effort to include her. She was furious. I began to use “carepartner” as part of my personal introduction as a signal that Debra was also part of her care team. “Hi, I’m Steve, Deb’s husband and carepartner.” For those who want it, agency in one’s own care is critical. This was the first reason for our choice.

Ownership for me

If the first reason was to support Debra, the second driver was for me. Caregiver made me feel like it was a job – a much-unwanted job – which made it easy to feel the victim and slip into resentment. But as we say so often, identity is a choice. Choosing carepartner as part of my identity helped me truly own the idea that stroke is a family illness, that this stroke happened to us, not just Debra. When I shared this with a close friend, he pushed back. “Aren’t you just playing mind games on yourself?” Of course, I am. Throughout life we all make choices about how we internalize things. This choice gave me agency and ownership for the support I deeply wanted to give Debra after her stroke.

A stronger relationship for us

A third and more recent value of embracing “carepartner” has been for us both. As we moved further past the initial trauma of the stroke and Deb’s recovery continued, we began to work more on rebuilding our relationship as a couple. The stroke certainly stole capabilities from Deb and forced us to rearrange the division of labor in our relationship, but we both were eager to live as true partners.

For many years, I avoided sharing my challenges with Deb. I was embracing Susan Silk’s “ring theory of support,” which I explained in my October 2020 column. By that theory, my role was to support Deb, and, if I needed help, I would look to others.

Several years ago, we were talking with the therapist about our ongoing efforts to strengthen our relationship and avoid the tension we were experiencing. She suggested that maybe it was time to “ditch the ring.” It’s hard to have a partnership, she explained, when one person in the relationship can ask for support but the other can’t. We embraced her suggestion; a real inflection point in our relationship journey. The ring theory was helpful for a while but became an anchor over time.

In a presentation we gave to survivors, carepartners and stroke care professionals shortly after that, I was talking about our evolving relationship as a stroke couple. I explained ring theory and our therapist’s suggestion, and that we had, in fact, “ditched the ring.” Afterward, a carepartner from the audience approached me and asked, “Were you talking about your wedding ring?” Clearly I was not, but I have become more careful about how I share that story.

Survivors – you, too, can help

We carepartners know that whatever challenges we face, they invariably pale compared to those of the survivors we support. That makes it hard to talk about our issues and ask for help. I feel empowered when Deb acknowledges my challenges and encourages me to take care of myself. Nobody benefits by ignoring carepartner challenges – not the carepartner struggling in silence, but also not the survivor, who doesn’t get support from a carepartner at their best.

Stroke really is a family illness. And recovery is best thought of as a collective, family process.