Dealing With Dementia During the Holidays and Keeping Life Merry
It was the Christmas upset that became a family triumph: Everyone had gathered at the Strubles' home in Bloomfield Hills, Michigan - and just as the gang was headed to bed on Christmas Eve, they heard the clatter of dishes being arranged on the table.
The elf at work was the family matriarch, Bertha VanTuyl, then in her late-90s, whose dementia had, until that moment, left her largely unengaged. But at 11 p.m. that night, she was in the kitchen, slicing up and setting out a traditional Stollen fruit cake. So what did the rest of the family do? Join her, even though the cake was meant for someone else. "That was the best memory we had," Laura Struble says about her grandmother, a nurse who died of Alzheimer's 20 years ago, and whose care for her patients inspired Struble's career expertise in dementia.
Now an assistant professor at the University of Michigan School of Nursing, Struble says that when caring for relatives with dementia: "You have to be prepared during the holidays to make adjustments to your plan."
[Read: What is it About Christmas Music That Gets Us?]
That may mean lowering expectations of your loved one and yourself - "Let the dusting go," Struble says - and rethinking your holiday itinerary as well as the kinds of presents you ask for (yes, ask for) and give.
Remember, too, you are far from alone in this situation. As Americans live longer and age in mass numbers, dementia has become increasingly prevalent. Dementia is not a disease but an umbrella term for a variety of manifestations of brain disease that impede mental function such as memory, communication and the ability to reason. While it's not a normal aspect of aging, the symptoms often surface later in life, according to the Cleveland Clinic, which says the illness affects 5 to 8 percent of all people over age 65, and the rate doubles every five years. By age 85, up to half of all people suffer from these symptoms. In rare cases (when it's brought on by drug use or a hormonal imbalance, for example), dementia may be treatable; but more often than not, it's a worsening condition caused by disease or injury. The most common cause: Alzheimer's disease, which makes up roughly 70 percent of all cases.
Donna Davies, a care consultant with an Alzheimer's Association chapter in New York, recommends that families with a relative suffering from dementia think about the feelings they want to generate during the holidays and plan accordingly. "We can get carried away with gift-giving and gift-buying and going to parties, when often what we really want is to make a deeper connection with the people that we love," she says. "To do that with someone with dementia, we have to reduce our expectations of what they can cope with."
But adapting is not necessarily settling - it just requires some creativity. Deborah Shouse, whose new book "Love in the Land of Dementia" chronicles her experience helping her mother through Alzheimer's disease, knew the holidays could be tough. So, she prepared for them by crafting new traditions that resembled the old ones. Because she knew she would miss cooking with her mother, she simply had her join her in the kitchen, helping to cut up food when she could, and when she couldn't, just being beside her. She also lined up a friend for emotional support, saying: "I might have a meltdown over the holidays - can I call you?"
[Read: The Secret to Gift Giving.]
Given the added stress of the holiday season, it's critical that caregivers are extra sensitive to their loved ones' needs - as well as their own. That may mean asking family members for help or even requesting unconventional gifts - like making a meal or two or providing some relief duty to allow for much-needed personal time.
As for the person living with dementia, Struble suggests soothing and practical gifts or those that recall yesteryear: photo albums depicting some early memories, a pair of large, soft socks to soothe swollen feet or sturdy shoes, a bird feeder, fitness video or DVDs of relatable sitcoms like "The Golden Girls" or "I Love Lucy."
[Read: Return of the Golden Girls: How Seniors are Creating Community.]
In terms of the holiday party itself, experts advise anticipating loved ones' needs - whether they need a hand with eating or directions to the bathroom. And try to dial down the commotion. Family gatherings can become boisterous affairs, which can overstimulate and upset people with dementia, says Davies, who suggests smaller get-togethers or designating a quiet part of the home where relatives can take turns visiting with their loved one. "I tried to have one person who was next to mom, so that she would feel anchored all the time," Shouse says. "That person could explain, 'Here's what we're going to do now,' and be really attuned to her needs."
Preparing guests with a brief letter or phone call to let them know about the loved one's progress can also smooth the situation, Davies says. "Letting people know ahead of time really makes everyone more relaxed because they're not confused and wondering what to do."
What don't you do? Don't quiz them about their memory, Struble says, noting that families often pepper their ailing relatives with questions like "Do you remember me?" and "What's my name?" - questions that can provoke anxiety for all involved. And don't worry so much about possibly being embarrassed by your loved one. "Maybe they don't have the best table manners," Struble says. But they "deserve to be out and about [and] not so isolated at home."
[Read: 6 Ways to Protect Yourself Against Alzheimer's and Dementia.]
You want to stay relaxed, speak simply, with a warm, reassuring tone and don't fret over a snafu that ultimately doesn't hurt anyone. For example, she says: So what if grandma's Christmas outfit doesn't exactly match?
"We're the ones that have the brain that is intact," she says. "They have a brain disease, and we're always expecting them to behave appropriately." Remember this, she says, so that when your relative blurts out something like "look at that fat woman," you can say to yourself, "Yup, that's the brain disease talking." Don't scold the bad behavior - just divert it, she advises.
Still, enduring the challenge of a loved one's dementia can take its toll and require some imagination.
Met with her mother's repetitive speech, Shouse would summon a new response each time. As she puts it, "You can think outside the box, but there's also something really creative about being trapped in a box and you have to look at the situation in new ways."
What worked best for her was learning to appreciate what she had and relish a particular moment with her mom, in all its idiosyncratic glory. "When I could remember just to be in the present with who she was right then," she says, "and see what I did have - a different relationship for sure, but a good relationship - that really helped me."
