It’s that time of year when we begin a variety of social functions; from Thanksgiving to New Year’s as holiday season can be quite active. Caring for a loved one who has dementia can make these times extremely rough.
This story is one that was shared in the AFA Newsletter a few years ago. We highly recommend utilizing the American Alzheimer’s Foundation’s site to help you through a variety of situations, including the holidays and situations you may find yourself dealing with.
Enjoying Thanksgiving with Dementia
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 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.
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.”
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.”
We will be sharing some options regarding talking with a loved one that suffers Alzheimer’s and/or dementia in a later articles. We will talk about how to have quality of life as both a caregiver and as a client who has dementia.
You and your family deserve to enjoy the holidays as much as possible when dealing with dementia or Alzheimer’s.
Let us help. We want to make sure the holidays are once again happy times; we can help you make the holidays calm and enjoyable with professional caregivers.
Photo by kkmarais