Finding the Words
Speech therapists at the Stroke Comeback Center in Rockville are helping survivors recover their communication skills—and connect with others facing similar challenges
Once a month, the center offers peer-led support groups exclusively for caregivers, recognizing that stroke and brain injuries take a toll on entire families. Stephanie Mensh leads the support group in Rockville, called Caregiver Connection. “It’s nice to be in a room where you can say what you’re thinking out loud,” says Mensh, a retired health policy advocate who lives in Bethesda.
Mensh’s husband, Paul Berger, had a stroke in 1986, when he was 36. The stroke occurred four years after they married, when they were a two-career couple living in Virginia and clueless about the implications of a major health emergency. The stroke was so severe that Berger couldn’t move his lips and tongue to form words, nor could he walk. Now, he takes regular strolls inside a neighborhood mall for exercise and delivers the occasional speech about life after stroke, as he did this spring at the center’s Rockville office. Berger read verbatim from his prepared comments, which he drafted weeks in advance and rehearsed about two dozen times, carefully tweaking it to avoid words that confuse him. Aphasia plays tricks on him, sometimes causing him to see one word on paper but say another. Three decades after Berger’s stroke, Mensh says she and her husband continue to process the experience and refine their coping strategies, which is why they’ve both remained heavily involved in the Stroke Comeback Center, where Berger has been going since opening day in 2005.
“It’s hardest to communicate in the evenings when we’re both stressed and tired,” she says. “Sometimes he’ll just start a story in the middle and I don’t know the topic. Sometimes he snaps at me if I don’t let him finish a sentence, and sometimes I snap at him if he doesn’t give me enough information.” The irony, she says, is that his communication disorder has forced them to invest so much time and energy into communicating that their relationship is stronger for it.
Aphasia experts say caregivers often struggle to strike a balance between helping their loved ones navigate conversations and allowing them to have a sense of independence and self-respect. Caregivers must act as interpreters, anticipate needs and offer an array of choices, which takes patience for all involved.
Sawyer, Quinnan’s wife, was recently talking about her proposed plans for Easter weekend, and her husband kept saying “no, no, no” while pointing toward the window. It took her some time to understand that he was actually pointing to the cross on the wall because he wanted to go to church. Sometimes the communication snafus take on a sense of urgency, like the time she called him from work and heard the smoke alarm going off in the background. She thought he’d burned dinner in the oven, only to learn when she reached home 10 minutes later that he hadn’t fully opened the fireplace damper when lighting a fire.
For Sawyer, there’s a silver lining even in that scary story: Her husband remains independent and pushes through any problem. He put the fire out on his own. He persistently works to improve his golf swing, insisting that it’s even better now than before. So it feels odd, she says, to be navigating conversations for a man who has always had all the answers. “I have to say, it’s uncomfortable for me because I don’t want to make him feel badly” by putting words in his mouth, Sawyer says. She says her sons, both in their 20s, often stop her from finishing their father’s sentences—they want to hear him do it.
She turns to her husband, who is sitting by her side, one eye on the Masters golf tournament that’s on the TV. “Do you think I facilitate too much?” she asks him. He smiles, swings his left arm around her shoulders, and gently rubs her back.
Dina ElBoghdady spent more than two decades as a journalist at several newspapers, most recently The Washington Post.