I looked for the link to this story in this month’s Alzheimer’s Foundation of America’s newsletter but they evidently only shared it as a story in the newsletter. Knowing this, I felt the need to share the story with you so that if you’re not receiving their newsletter you can sign up for it and knowing that you most likely wouldn’t have the opportunity to read it I could bring it to you here. It’s touching, it’s sad, it’s happy… it’s Alzheimer’s.
I highly recommend the AFA for anyone who is even remotely touched by Alzheimer’s or other dementia related issues. They provide a multitude of resources and information that can help you throughout the many stages of Alzheimer’s disease and the symptom of dementia from Alzheimer’s or other types of health issues.
For the Thanksgiving holiday I really wanted to share this story with you. Because it’s not archived yet on their site I wanted to be certain that you had the opportunity to read it before the holiday so that you too can enjoy some of what we who live with Alzheimer’s in our daily life may refer to as “an Alzheimer’s moment.” Sometimes it is the sharing of stories like this that can help you get through a rough day, a rough week, or simply move forward with a little bit less of a load upon your shoulders. Enjoy.
A Thanksgiving Story – Life with Alzheimer’s
Contributed to the AFA by: Norman Crampton, Bloomington, Ind.
Like so many couples, Carol and Charlie expect to have people over on Thanksgiving Day for good food, good conversation, updates on people and times past.
Sometime after dinner they’ll probably pull the family photo album off the shelf and gather around Carol as she leafs through the book and says a word or two about what she sees in faces and places that she used to know perfectly well.
And if Carol says some surprising things that have no connection to family reality-no problem, Charlie will have counseled their guests in advance. Just follow Carol’s lead and have some fun inventing a story, he’s said. The point is to keep Carol talking and engaged.
It was about this time almost a decade ago that Carol, nearly frantic, told Charlie she couldn’t pull Thanksgiving together anymore. “I’ve got to look up a bunch of stuff-meals I’ve been doing for years!” she told her husband.
“Don’t worry,” he said, concerned. “We’ll do it together!”
“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 Midwest suburb.
Caring at home for a life-partner who has dementia may seem heroic but it’s not exceptional. Most people with memory loss-three out of four, experts say-live at home, not in institutional care.
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, and finding your way there may not be easy. Charlie recalled one very unhappy springtime walk, hand-in-hand with Carol.
“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 but Charlie could feel the tension in her hand. He was asking her to recall facts that had become maddeningly beyond her reach.
As Charlie has searched for ways to stay in touch with Carol, one resource he has found is story-telling technique developed at the University of Wisconsin Milwaukee and available online. Called TimeSlips, the program provides simple instructions about how to use photographs-random scenes-to prompt a conversation with a person with dementia.
Caring for a loved one with dementia “is really all about communication,” says Anne Basting, a professor of theater at UWM and creator of TimeSlips. “If you can’t get that right, then things are really tough for a long time.”
Getting it right wasn’t so hard, Charlie recalled. 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,’ pointing to a large black rock in the garden.”
Prof. Basting interprets: “You’re allowing a person to express through metaphor rather than necessarily fact.” And if the right word is beyond reach, “you can choose whatever option and feel confident about it,” she says. The point is to keep talking and, for a while more, break through the silence of slipping into dementia.
Carol and Charlie continue to communicate “with very little anxiety, certainly not on her part,” he says. “As we’ve moved into a less and less verbal form of communication I’ve begun to slowly realize the qualities of a good care partner. First, I had to learn how to be fully present, to be there, to be still and listen.”
He has learned to listen visually, watching Carol’s eyes and her facial expressions, her movements. Holding her hand he can measure her tension.
“So 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 said.
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.”
GO Physical Therapy takes no credit for this story. We simply received it in our email and felt that this would be a wonderful share with our readers. Again, we highly recommend that you check out the AFA website and sign up for their newsletter with the link provided in the first paragraph of today’s blog post.
Remember that GO Physical Therapy has specialized, evidence based techniques for those who suffer from dementia and/or Alzheimer’s. We pride ourselves in working specifically with those affected by dementia and giving them the best quality of life possible. As a trusted provider for the Long Island Alzheimer’s Foundation, you can rest assured that we not only understand but keep up on the latest findings about Alzheimer’s and how to work with the families who have loved ones that are affected.
While the holidays can be a trying time for anyone who is involved with this disease; one of the best things you can do for someone who has dementia is get them involved with keeping physically active. We utilize techniques that work on both the mind and the body to create a specialized physical therapy plan specific to your loved ones needs.
You and your family deserve to enjoy the holidays as much as possible when dealing with dementia or Alzheimer’s. Let us help. Let us give your loved one the gift of overall better health. We come to your home in a number of locations; serving Long Island, Brooklyn, Bronx, Queens and other areas of the New York area with in-home physical therapy.
Dedicated To Your Health & Well-being (and safety),