“One of the biggest stumbling blocks for caregivers is knowledge,” said Dr. Richard C. Senelick, author of “Living With Stroke: A Guide for Families.” His advice is to learn everything you can about stroke, your loved one’s condition and prognosis. “The more you learn, the better you’ll be able to care for your loved one,” he said.
Mr. Baxter’s book “Relentless: How a Massive Stroke Changed My Life for the Better,” describes the experience, including his wife’s loving involvement in his care. Though they have since divorced and each has remarried, she is committed to helping other caregivers learn from what they went through during the years she cared for him after his stroke.
Ms. Baxter, who is now Ms. Renzoni and living in Pleasant Prairie, Wis., said she received little professional guidance beyond the advice from the Rehabilitation Institute of Chicago, where Mr. Baxter had been treated, to “avoid open-ended questions, just ask yes-and-no questions.” In other words, don’t ask him, “What do you want for breakfast?” but rather ask, “Do you want eggs for breakfast?”
“I had to practice patience,” she said about communicating with Mr. Baxter. “If I became anxious, things really took longer. If I went too quickly with questions, trying to guess what he wanted to say, Ted would get frustrated. I took me half a day to understand that Ted wanted a new charger for his cellphone. I had to figure out how his brain was working.
“Ted would say, ‘I want gym’ and I’d say, ‘You want to go to the gym?’ and he would shake his head ‘no’. Finally after several more guesses, he pointed to his mouth and I said, ‘You mean gum?’ I had to translate, as if from a foreign language I didn’t speak. It was not like a child who learns to say ‘dog’ and would say the same word the next day. Ted might say dog today but not be able to say it tomorrow.”