For families with a relative contending with dementia, holiday festivities can present a host of unanticipated challenges.
Linda Finkbeiner of Exeter, Ont., learned that lesson last Dec. 25, when she and her husband Jim went to their son's house to open presents with the grandchildren and enjoy a Christmas brunch.
Her 67-year-old husband, diagnosed with early-stage Alzheimer's disease almost three years ago, had trouble dealing with the sensory overload, including the boisterous excitement of three young children.
“I wasn't prepared for the effects of this disease on Jim,” says Ms. Finkbeiner, 62. “This year I am. I know that too much noise, overcrowding, all of this excessive stimulation is very agitating for him ... it was too much to take in, conversations were hard to follow and he just kind of withdrew.”
Ms. Finkbeiner says her husband went into another room for some quiet time. “Then he wanted to come home and when we came home he went straight to bed, at 2 in the afternoon.
“And that was Christmas.”
It wasn't so much the loss of the holiday tradition that bothered Ms. Finkbeiner. “I was more disappointed in myself that I hadn't anticipated this problem for him.”
Such a reaction to the social frenzy surrounding the holidays is not uncommon, says Kathy Hickman, education manager for the Alzheimer Society of Ontario.
“For all of us, it can be stressful, it can be overwhelming. But for the person with dementia, their ability to take in all that stimulation and to handle it well is reduced,” she says.
“That can manifest itself in anxiety, frustration, wanting to withdraw.”
Even seeing the halls decked for the holidays – multicoloured strings of lights, glittering decorations and a Christmas tree – can be anxiety triggers for a person with dementia, especially as the disease progresses and memory loss becomes more prominent.
“Oftentimes we look at decorations and we think: ‘Aren't they beautiful,'” says Miami psychotherapist Nataly Rubinstein, author of Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide.
“What happens is for people who have memory loss, they don't quite understand what the decorations are for sometimes,” says Ms. Rubinstein.
“Now all of a sudden you've got this tree in the living room. And it's a tree that wasn't there yesterday … And because it is something new and it is out of their ordinary, it can cause anxiety: How did this get here? What's next?”
She says the inability to recall conversations, activities and even people isn't all there is to dementia-related memory impairment. “Memory encompasses logic, knowledge, concentration and judgment,” so its progressive diminishment can lead to some unexpected behaviours.
“You're putting presents underneath the tree. And who doesn't love a present?” she says. “I tell people: ‘Expect your presents to be opened a lot sooner.'” While difficult and disorienting for many people with dementia, the festive season can be particularly taxing for the caregiver, often the spouse of the person with the disease, adds Ms. Rubinstein, who took on that role for her own mother, while raising two children.
“Many caregivers tell me they don't want to do it any more,” she says of hosting the family gathering. “Because the kids come, they all sit around, everyone laughs and has a good time and then they leave. And you're stuck with not only cleaning the kitchen and the dishes, but you're stuck taking care of your loved one.”
Ms. Hickman says other family members can help ease the caregiver's burden by pitching in to help prepare for the holidays: “Offering to do some shopping for the person. In terms of the meal, hosting the Christmas dinner or whatever the festivities are, hosting it at someone else's or thinking about doing it potluck-style so it's not all on one person.”
For the caregiver, the key is to simplify activities as much as possible, she advises.
“Still continue to involve the person [with dementia] Especially in the early stages, this is so important because quite often what happens is the person is quite aware of what's happening to them and still quite able to do a lot of things.
“And oftentimes, people around that person will start to step back from them or not include them because of the diagnosis,” Ms. Hickman says. “That can be really, really difficult for the person with dementia to feel as if they're not being included and not an important part of the family in the gathering.”
Local chapters of the Alzheimer Society can counsel families on what to expect as their loved one's disease progresses, as well as providing tips on how to handle the holidays and even suggestions on appropriate gifts for the person.
Ms. Finkbeiner says she has already taken steps to avoid a repeat of last year.
“I have decided that this is Christmas and I've decorated the house more than I did last year,” she says, adding that she has been taking her husband with her to Christmas shop, so he can see the decorations and hear the music and help make decisions about what to buy.
On Christmas Day, they will go to their son and daughter-in-law's home as they did last year, and they will stay as long or as short a time as her husband can manage.
“My feeling is this is his Christmas and it needs to be a Christmas that he's comfortable with,” she says. “Christmas has always been a big deal in our family, but Jim comes first. And to me that's the bottom line. We get to see the grandkids open their gifts and we get a brunch. And if we don't get turkey, well I can cook turkey another day and have them over when there's less activity going on.”
Ms. Finkbeiner's advice to others caring for a loved one with dementia is to recognize the signs that things are not going well for the person and to be prepared to alter plans. In other words, to be adaptable.
Her hope for the big day is a simple one.
“I want him to enjoy Christmas to his best ability. And I want to at the end of the day, no matter what happens, if we come home and we don't get a turkey dinner or whatever to be able to look back and say: ‘That was a good Christmas.'”
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