The holidays can be a tricky time for the 580,000-plus older adults with Alzheimer's disease and their caregivers in Florida — all the kids and kin milling about, making noise and causing confusion.
In Florida, the Alzheimer’s Association helpline, 1-800-272-3900, is responding to those concerns.
One family's experience
Joyce Nunn, 74, has come to an interview at her neighbor's Summerfield home with her thoughts organized on Post-it notes that she arranges on a table.
"I am a Post-it girl," she said. "I don't know what I did without Post-its."
But she doesn't need them to tell this story. Nunn said her husband, Ed, died in 2022 of Alzheimer's, a progressive brain disease that affects memory, cognition and behavior.
They used to host 25 to 30 family members for Christmas. She'd do a feast of seven fishes on Christmas Eve and the next day cook prime rib and "all that blah stuff" because Ed was from England.
She said Ed loved Christmas. It was, after all, his birthday, too.
Eventually, Alzheimer's forced them to pare down the celebrations to smaller groups, Nunn said. "The kids, the dogs ... that simultaneous conversation, the cross-talking; their brains cannot handle this."
Nunn said she didn't tell most of the family for years, not until a Thanksgiving gathering in 2015 after his symptoms got worse.
The response she got was denial. But there were very noticeable changes in her husband. For instance, he had always been a stickler about table settings and using the right fork.
"But this wasn't the Ed they saw," Nunn said. "The Ed they saw was the one who picked up the salad fork and used it for everything, or he would use the soup spoon and eat his mashed potatoes with a spoon. And this is when it kind of clicked, you know, there's something wrong with Ed."
And this polite, well-mannered man started dropping profane f-bombs left and right on Christmas Eve.
Nunn said that, immediately after news of Ed’s diagnosis, some family members started ignoring him. And that bothered her a lot.
"It's like, you know, 'How come nobody's talking to me?' They're talking among themselves and leaving him out of the conversation," she said. "You can't do that."
Scenarios and solutions
Katie Fahrenbruch works with the Alzheimer's Association helpline in Florida. She said that around the holidays the calls fall into three scenarios.
First, caregivers worry their person will be overwhelmed. Fahrenbruch suggests choosing the important parts and planning to do those successfully.
"That may look like we get Grandma set up in her favorite chair in her favorite room of the house," she said. "And the grandkids come to visit her a couple at a time, instead of everyone running into the room at the same time."
Other caregivers are concerned guests will be taken aback by the transformation in their loved one. Here, Fahrenbruch suggested sending a note ahead of time giving them a heads-up and tips on how to interact.
And then there are calls from visiting adult children alarmed by changes in a parent. Could it be Alzheimer's and what should they do?
Memory care specialist Dr. Rosemary Laird said that, ideally, the adult child can start a conversation with the parent and caregiver. There are tips on how to do that — along with 10 early signs and symptoms of Alzheimer's disease — on the Alzheimer's Association website.
"What you really want to do in this situation is not ignore this instinct that you're having," Laird said, especially if the changes are significant.
Then, she said, push for an evaluation with their doctor and a referral to a specialist or through one of Florida's memory disorder clinics.
Recent progress in drug therapies that can slow progression of the disease underscores the importance of a diagnosis.
"There can be something done about the illness," Laird said.
That is one reason why early detection is so important.
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