Ways caregivers can approach the holidays when their loved one has dementia
Providing dementia care is mentally, physically and emotionally challenging. Coupled with the stress to plan, shop, decorate and prepare for the holidays, caregivers often feel overwhelmed as they learn how to care for a parent with dementia. Keep these stress-busters in mind as you meticulously plan and prepare to hang stockings and make things merry and bright while providing care to a parent with dementia.
No Two Days are the Same
Every case of dementia is as unique as the person living with the disease. And caregivers are just as individual.1
What might work with one person, may not work with another in terms of how you interact or relate to dementia-related scenarios, says Connie Hill-Johnson, a caregiving expert who took care of her mother during her battle with dementia.
Hill-Johnson cautions against comparing your holiday experience and/or expectations to anyone else’s.
Focusing on what you have, like a colorful tree or ornaments your children lovingly made decades ago instead of what you lack (i.e., the time to bake dozens of cookies because you’re juggling life and dementia caregiving) changes your focus and allows you to bring in more abundance, says Jaime Pfeffer, a wellness expert and meditation teacher in Warren, Michigan.
Pfeffer says you’ll be more likely to enjoy the holiday season and create memorable moments as you’re caring for a parent with dementia.
Keep it Simple
“Change of familiar environment can be disruptive to the person with dementia,” says Steve, Barlam, a nationally known speaker in geriatric care management and former president of Aging Life Care Association. That includes accepting an invitation to host—or visit—an out of town family member or friend during the holidays.
“Sticking to familiar settings and small gatherings that adhere to the normal routine as much as possible can eliminate potential stress for both caregivers and the person living with dementia.”
That goes for décor, too. “Increased stimulation, lights, noises, activity, etc., can contribute to increased agitation,” adds Barlam.
Whenever possible, stick to foods, decor, music, etc., that your family has incorporated in the holidays for years. “We had my mom sit at the table, even though we had to assist her sometimes,” shares Hill-Johnson. “We gave her gifts, even though she may not have known what the item was and included her in all of the pictures, even though it have been difficult to get her to smile sometimes.”
While sticking to typical holiday routines, resist the urge to trigger memories. Although it’s tempting, steer clear of asking “do you remember the Christmas we…” says Hill-Johnson. Doing so can cause confusion for the person with dementia and make caregiving emotionally difficult when your loved one gets agitated because they don’t remember.
One way to ease the burden of maintaining those traditions is by giving yourself permission to adapt, says Barlam. “Doing things like hosting family, cooking a large meal, buying gifts and other holiday tasks, in the grand old way you once did before caring for a person with dementia might not be realistic.”
Instead, he suggests delegating preparation of some of the traditional dishes to those coming for dinner or brunch. Ask family members to come over and help you, and your mutual loved one with dementia, to help decorate or sit with the person while you string lights and deck the halls. “Create a potluck holiday meal instead of shouldering the entire shopping, food preparation and clean-up burden yourself,” he adds.
Prepare for the Unexpected
Because of the unpredictability of what early dementia looks like, and the behavior and mood of the person living with the disease, Barlam says it’s often easier for caregivers to isolate themselves, rather than be with people. “It can be exhausting to be vigilant and have to explain/make excuses for the person with dementia.”
He suggests pushing yourself to be with others and having an alternate plan in mind can lessen frustration and disappointment if plans suddenly change.
“When accepting an invitation or inviting someone over during the holidays, explain “I’d love to come to your home for a holiday party/have you for dinner, but if my loved isn’t feeling well, can we instead have brunch the next day?”,” he says. “Having an option helps you provide the best care for a parent or loved one with dementia, while still maintaining your social connections.
Know Expectations Might go Unmet
“Don’t give in to unrealistic expectations that the holidays will be as they’re portrayed in television ads, movies, etc.,” urges Barlam. “Remind yourself to enjoy the happy moments your family shares, no matter what they look like and how they occur,” he says. “Don’t get caught up in the minutia or a keeping up with the Jones mentality.”
To manage expectations, he suggests asking yourself “What would make my holiday a good one this year?” Then make a list of two to three simple things that would make you content and work on attaining just those things.
And be prepared to be disappointed. “Family and friends may disappointment, even when they don’t intend to,” Barlam explains. “Manage that added stress by communicating how you feel and what your expectations are for the holidays. Let others know what they can do to make a difference and help you care for a loved one with dementia.”