At a recent caregiver support group held by Stroke Support Association via Zoom, facilitator Dr. Jane Claus asked the question: “What do you do to take care of yourself?” The answers proved particularly helpful to a newcomer to the group, who was experiencing the confusion and overwhelm of her new caregiving role.
Helen, whose husband Ray had his stroke 17 years ago, said: “I cried a lot at first. We caregivers aren’t in control of anything anymore. The stroke survivor himself is not in control. But I have my faith and my job, and I’m able to work from home so that I can be with Ray.”
Robert, whose wife Heather Anne had her stroke in 2018, said: “The early days were a blur. The first six months you won’t remember, at least in a clear, sharp way. I had a problem adjusting all of my aspirations, such as travel. Everything had to be scaled down, especially in the first year. There were a lot of doctors’ appointments the first year, a lot of tasks and appointments and errands. You take a deep breath and keep plugging along, and everything does settle down after about a year.” An avid cook who likes to experiment with recipes through the centuries, Robert also enjoys playing the piano. He reported, “One of the things I am able to do for myself is to play the piano every day for 45 minutes. Playing the piano had been a fixed point in my life for years, and I am able to continue doing that.” Having experienced some depression after his wife’s stroke, he found the piano a salve. “I am not depressed when I am playing the piano. It’s a comfort to know that all I’m trying to figure out is why my fingers aren’t working the way I want, rather than dealing with anything else.”
Dwain, whose wife, Mary, had her stroke in 2016, said: “Mary and I worked out a system where I could go play golf for a while. She chose being alone at home over having a paid caregiver there that she didn’t like. She can be on her own for an hour or so, which enables me to go to the grocery store and other errands.” Dwain also maintains social contact as best he can. “Every day around 4:00 o’clock I sit on my porch and talk with the neighbors as they go by. This is like a mini vacation for me. As soon as I walk out the door, my mind frees up.”
Natalie, one of our newest members and caregiver to her brother, who had a stroke about nine months ago, said: “I’m taking care of my brother so much, which is hard because I have a full-time job. Thankfully, I can work from home. I’m trying to go out and do some exercise when I can, maybe schedule a short massage.”
Everyone agreed that self-care is one of the most important tools in caregiving: if the caregiver is depleted, or burned out, or demoralized, the quality of the caregiving can suffer. Taking time out for to relax, restore, or enjoy personal interests allows the caregiver to come back to his or her role with refreshed perspective and renewed vigor. The caregiver benefits, and in so doing, so does the stroke survivor.