For families of people with dementia, holidays come with pitfalls

Residents at Orchard Grove nursing home in Uncasville applaud a performance by a group of students in 2015. For the family members of people with dementia or Alzheimer's disease, holidays can mean a constant stream of stressors, said Bob Elmer, a retired nursing home administrator who now writes and lectures to the caregivers of dementia patients. (Sean D. Elliot/The Day)
Residents at Orchard Grove nursing home in Uncasville applaud a performance by a group of students in 2015. For the family members of people with dementia or Alzheimer's disease, holidays can mean a constant stream of stressors, said Bob Elmer, a retired nursing home administrator who now writes and lectures to the caregivers of dementia patients. (Sean D. Elliot/The Day)

The winter holidays are important in Amy Dubreuil's family. Even though one sibling lives abroad and her "nontraditional" family sometimes made tacos instead of turkey on Thanksgiving, the Ledyard resident said that the holidays were a time for everyone to be in the same place.

"The holidays have always been a big deal," she said. "It's always kind of been a very tight, family-centered thing."

In January, Dubreuil's mother started showing more severe symptoms of dementia.

She was diagnosed five years ago, but this year Dubreuil has become used to apologizing when her mother says inappropriate things in public, and preparing herself for the moments when her mother doesn't recognize her.

"She's at the point where I can be anyone from her sister to somebody's friend," she said.

So this year, Christmas — a time when Dubreuil's family will be hosting and attending dinner parties, opening presents and cooking breakfast — will be different.

"There's no way she'll be able to deal with extra people," Dubreuil said.

For the family members of people with dementia or Alzheimer's disease, holidays can mean a constant stream of stressors, said Bob Elmer, a retired assisted living administrator who now writes and lectures to the caregivers of dementia patients.

"They're busy times, there's lots happening," Elmer said. "When you're in a room full of people and you have dementia, everything is coming at you."

Last week, Elmer presided over a meeting of a monthly support group he hosts at Masonicare, a senior living facility in Mystic. He doled out pieces of advice to the group: Keep the atmosphere positive, don't argue with the person with dementia, pay attention to how they're feeling.

They're all tips that apply to the daily grind of living with a person with dementia, Elmer said, but they're especially important when the house is full of people or it's their first Thanksgiving not living independently.

The memories of holidays past or stress that they can't remember a name could distress a person with dementia or ruin the whole celebration, Elmer said.

"You just don't know what those triggers are going to be," he said.

Dubreuil said she usually pays close attention to her mother during family gatherings, and she takes Elmer's advice to assign at least one designated driver to take her mother home if she starts looking tired.

"We kind of look for cues with her," she said. "When she starts getting up and starts taking everyone's dishes away, we know she's fed up and it's time to leave."

Even for families that don't usually celebrate holidays with a big fuss, adjustments always come along with a dementia diagnosis.

Terry Briggs' wife recently moved into a room at Masonicare. Before she began showing symptoms of dementia and lack of interest in celebrating holidays, the couple typically would drive to Vermont to be with family, Briggs said.

But several years ago, he started making the trip north alone, leaving his wife with a caregiver because socializing made her uncomfortable.

"It wasn't worth fighting," he said. "I could kind of tell she didn't enjoy it."

In some cases, avoiding the topic of the holiday altogether is the best way to keep the peace. 

"We will not mention the word 'Thanksgiving,'" said one woman who planned to visit her husband at his assisted living facility Thursday. "We're just there to have lunch."

Elmer advises people to remain flexible around the holidays, and to call the Alzheimer's Association's hotline — 1 (800) 272-3900, a number Elmer has memorized — for help.

"You may want to relive all those times that may have been special for you (or) make things happen like they used to happen," he said. "(But) forcing that is a really bad idea."

It's "learning to accept that things are not the same, and they will never be the same," Dubreuil said. "Your mind has to be going constantly, trying to keep up with where they are."

m.shanahan@theday.com

Editor's Note: Bob Elmer's previous career was mischaracterized in an earlier version of this story. An earlier verion also misstated how often the Masonicare support group meets. Both errors have been corrected.

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