A Thanksgiving Story: Coaxing Memories out of the Fog of Dementia
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alzwa.org Washington State Chapter 800.272.3900 206.363.5700 f Serving Washington & Northern Idaho 24/7 Helpline [email protected] A Thanksgiving story: Coaxing memories out of the fog of dementia By Norm Crampton November 22, 2014 Carol was frantic. "I simply can't fix Thanksgiving dinner anymore," she told Charlie. "I've got to look up a bunch of stuff — meals I've been doing for years." Charlie tried to reassure his wife. "We're all getting old," he joked, a bit concerned. "We all have those problems; don't worry about it. I'll make Thanksgiving dinner!" Trying to be helpful, he was taking something away from Carol that she had cherished. But after 40-plus years of caring for home and family, she simply couldn't pull together Thanksgiving without his help. That was nearly a decade ago. "When we became aware of Carol's intimate relationship, so to speak, with Alzheimer's, we decided to make an effort to care for each other," Charlie said in a recent conversation. He's a retired vascular surgeon, age 77, same as Carol. They live in a suburb in the Midwest. Caring at home for a life partner who has dementia may seem heroic, but it's not exceptional. Most people with memory loss — about 75%, experts say — live at home, not in an institution. Becoming an effective caregiver at home can take a long time, Charlie has learned. To communicate, you try to live in the other person's world. Finding your way there takes imagination. As Charlie searched for ways to stay in touch with Carol, one of the resources he found is an online program developed at the University of Wisconsin-Milwaukee campus and available free to individual caregivers at home. Details follow. Carol's dementia worsened, and Charlie's first efforts simply to chat with her often didn't work. He recalled one springtime walk, hand in hand with his wife. "We stopped in front of a pretty garden, and I said, 'Remember Uncle Bob, his garden, how pretty it was? What kind of flowers did he used to have?' And after several questions like that, Carol just looked at me in anger and agitation." She didn't say anything to Charlie, but he could feel the tension in her hand and see it in her body, and it was a very uncomfortable time, he remembers. He was asking her to recall some history that was beyond her reach. Caring for a loved one with dementia "is really all about communication," says Anne Basting, professor of theater at UWM. "If you can't get that right, then things are really tough for a long time." Basting has developed a method to help caregivers talk comfortably with people who suffer memory loss. Charlie has learned the method. On later garden walks with Carol, "Instead of asking her a direct question, I would just say, 'Wow! Look at this!' and let her respond however she wanted, and she might say something like 'Yellow, warm' and 'black dog,' looking at the large black rock in the back of the garden." Basting says, "You're allowing a person to express through metaphor rather than necessarily fact." In other words, you don't have to dredge up memories but can just use the imagination, which stays intact much longer. In a person with memory loss, when metaphor replaces fact, "you lose the panic, you lose the stress," Basting says. So, "black dog" instead of "black rock"? No problem. If the right word is beyond reach, "You can choose whatever option and feel confident about it," Basting says. The idea is to just keep talking and not recede into the silence of Alzheimer's. When Charlie and Carol stood in front of the spring garden and he said, "Wow, look at this!" it was like holding up a color picture to invite Carol to say a word or two. That's how Basting's method, TimeSlips, works, by providing simple instructions for stimulating the other person's imagination — for storytelling. Lisa Gwyther, a faculty member at the Duke University Center on Aging, hears families say they lose the ability to have conversations. "You can't just talk with Mom the way you used to — household events, what the kids are doing, that sort of thing," she says. But telling little stories — free-form, non-judgmental, open ended — may help you "see that spark of a person as he or she once was," Gwyther says. She knows TimeSlips and recommends it. Charlie learned some time ago to stop asking Carol for direct answers and correcting her replies. But cuing visitors to do the same has required patience. "When we've had family and friends over, it's always very difficult for people to feel comfortable with someone with dementia," he says. Well-meaning, a friend may leap to fill the gaps in the other person's conversation, "and that's usually not too helpful and creates a fair amount of anxiety." But there's the other way. Consider the familiar Thanksgiving Day activity of looking at family photos, pictures that may prompt little stories. "We'll bring in an album or scrapbook, and we'll look at the pictures together and let the story move along in Carol's world, and we'll encourage each of the folks to make their own contributions — they're all valid," Charlie says. Time is precious. Carol has Lewy body dementia, a combination of Parkinson's and Alzheimer's, Charlie explains. She's "pretty much at end-stage dementia," he says. But they continue to communicate "with very little anxiety, certainly not on her part." "As we moved into a less and less verbal form of communication, I began to slowly realize the qualities of a good care partner," Charlie says. "First, I had to learn how to be fully present, to be there, to be still and listen." He learned to listen visually, watching Carol's eyes and her facial expressions, her movements. Holding her hand, he can measure her tension. "Thanksgiving will be at our house again this year, and we'll all work very hard to do it her way and be sure that she feels she's an important part of the process," Charlie says. Deep-fried turkey won't be on the menu, however. Charlie says he's tried for years to get Carol to agree to deep-fried turkey, "but I still can't get a positive response no matter what I do." Norm Crampton of Bloomington, Ind., is a freelance writer and former Chicago Sun-Times reporter. He writes occasionally for the Encore section of The Wall Street Journal. .