"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.
Ted 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, Kelly is committed to helping other caregivers learn from what they went through during the years she cared for him after his stroke.
Kelly, whose last name is now Renzoni, now lives in Pleasant Prairie, Wisconsin. She said she received little professional guidance beyond the advice from the Rehabilitation Institute of Chicago, where 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 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."
His efforts to regain function were "smaller than taking baby steps — it was baby steps with a disability," Renzoni said.
Still, she said, "he was my husband, not my child, and I didn't want to treat him like a child. I had to watch as he struggled to find the right words, which was very hard. I wouldn't necessarily answer for him, but I would step in if I could tell he was getting frustrated. When we went out to dinner, after he tried for 10 minutes to say what he wanted to eat, I would ask if he would like me to order for him."
It's important not to be an enabler, she said. A stroke survivor "has to struggle if he's going to get better. It wasn't that his right arm wasn't working. It's that his brain wasn't sending signals to the arm." She read about tying down his left arm to force him to use the right, based on the theory that doing so would enable the right arm to become reconnected to the brain, which it eventually did.
Renzoni has a lot more practical advice for those caring for stroke survivors. Perhaps most important is connecting with other caregivers nearby who are facing a similar challenge.
"It's very helpful to know you're not alone," she said. "I would ask nurses, doctors, therapists: 'Do you know others in this situation I can talk to?'"
She also cautions loved ones "not to listen to doctors who say the person won't ever recover or that recovery stops at six months to a year. Ted continued to recover for more than a decade. In fact, he's still recovering 14 years after his stroke."
Renzoni, who has since become a licensed social worker, said stroke survivors are not the only ones in need of therapy. Caregivers, too, need therapy and need to know how to care for themselves. "You need your time and your time only. My life stopped for a while. I didn't leave Ted home alone for maybe six weeks except to run to the grocery store, and he wouldn't allow me to hire anyone to be there with him. I think caregivers should ask friends and relatives to come and relieve them," she said.
"If somebody offers help, take it," Renzoni added. Too often, caregivers feel obliged to do everything themselves, which can result in impatience, undue stress and eventual burnout. "But if people don't offer to help, ask. Tell people what you need," she said.
"People don't know what to do and they usually can't guess," Renzoni said. "Until you're in this kind of situation, you have no clue what it's like."
Her advice to those who might be at the giving end: "Don't say 'Let me know if I can help.' Say, 'How can I help?' Changing those words around makes all the difference."
Family and friends need to be prepared for personality changes in stroke survivors. "Unlike cancer or heart disease, the stroke victim's loved ones may have to deal with symptoms that seem to suddenly and dramatically change the person they love," Dr. Matthew E. Tilem, a neurologist and stroke specialist at the Lahey Clinic in Burlington, Massachusetts, told Everyday Health.
As Renzoni found, "Initially, Ted was very loving, kind and sensitive. But he didn't understand that when he became frustrated by his slow recovery and failure to return to his former life, his bad traits became magnified." After a decade, and a successful stroke recovery, the couple decided it was time to go separate ways.
Written by: Jane E. Brody
Illustration by: Garcia Lam
© 2019 THE NEW YORK TIMES
