Hosting the Holidays When Your Loved One Has Alzheimer’s Disease
Our holiday memories so often involve our senior loved ones! Grandma baked the best pumpkin pies … Dad carved the turkey with surgeon-like precision … Uncle Allen dressed up as Santa … Aunt Julie's Hanukkah latkes were out of this world … Mom held the whole celebration together with her legendary organizational skills.
But holiday festivities change when these beloved elders are touched by Alzheimer's disease or other memory loss. If your loved one lives with you or you're otherwise serving as their primary caregiver, how can you adapt traditions when it's fallen to you to be the center of the gathering? If siblings, children, grandchildren and other relatives will be coming to your place, it goes without saying that things will be different this year.
First things first. Even if you live in the long-time family home, where the traditional celebration has always been held, does it make sense for you to host the family gathering now? Stress, sadness and your loved one's care needs might mean you just don't feel up to it. Talk to your family and friends about alternative celebrations.
But don't dismiss the idea of hosting without considering possible benefits, both for you and your loved one. If your loved one can take part in the gathering, their familiar space may well be the best location for it. You can adapt family traditions to accommodate your loved one's new reality—which, by extension, is the new reality of the family. "With the holiday season hustle and bustle, stress is a constant companion of planning parties, holiday shopping and family gatherings," said Rebecca Axline, LCSW, supervisory clinical social worker at Houston Methodist's Nantz National Alzheimer Center. "Making some minor adjustments to family traditions, caregivers and their loved ones are still able to make the most of their holiday."
Here are tips from experts and family caregivers:
Make it a priority to maintain your loved one's routine. Even in the midst of the special days, preserve the basic framework of your loved one's daily life as much as you can. Says Dr. Cindy Carlsson, an Alzheimer's researcher from the University of Wisconsin, "Holidays are anything but routine, yet a routine is the best way to be kind to the patient. Make sure the day is as normal as possible by providing meals at the same time they usually are." Be sure your loved one takes medications at the regular time, follows their regular exercise routine, and gets plenty of rest. Many people with dementia do better earlier in the day, so consider holding a brunch instead of dinner.
While preserving traditions, make adaptations. Start by scaling back to what you can manage. This isn't the year for a huge bash. You'll need to make changes to accommodate your loved one's condition and ensure their safety. Large groups and loud noise can be distressing for people with dementia, so pare down the guest list. Avoid decorations that could be mistaken for food. The Alzheimer's Association cautions that blinking lights can frighten or confuse a person with dementia. Set aside a place in the home where your loved one can rest or retreat if they become overstimulated.
Prepare and involve your loved one. Even if your loved one doesn't remember from day to day what's going to happen, involving them in the preparation helps familiarize them with the event to come. Dr. Carlsson says, "We recommend that you involve an Alzheimer's patient with straightforward activities like wrapping gifts, folding napkins or simple crafts." Let your loved one help with baking and decorating; even if they can't really participate, they may enjoy watching you and listening to you describe what you're doing. Go ahead and make Nana's famous cinnamon rolls; she may surprise you with some advice or at least enjoy the tribute. And before guests arrive, go through a photo album to provide a memory cue about those who will be there.
Prepare family members. Experts from the National Institute on Aging say, "If this is the first visit since the person with Alzheimer's became severely impaired, tell guests that the visit may be painful. The memory-impaired person may not remember guests' names or relationships but can still enjoy their company. Emphasize to guests that what is important is the meaningfulness of the moment spent together and not what the person remembers." The Alzheimer's Association suggests writing a letter or email ahead of time so guests will understand the changes in your loved one's personality and behavior; here are tips they offer for creating the letter. Don't forget to talk to the youngest family members ahead of time. Children can sometimes interact in a remarkably nonjudgmental way with people with dementia, but personality changes resulting from the disease can be disturbing for a child who doesn't understand them.
Ask for help. Most people are very willing to do something—they just might not know what to do! Make the dinner a potluck. Ask a guest to try their hand at Mom's honey cake recipe. Let children decorate—it doesn't have to be perfect. Perhaps visiting family members can stay with your loved one while you go shopping or out for a stress-busting walk. And if you use in-home care, consider hiring the caregiver for the holiday get-together to provide some continuity and supervision for your loved one, which can enable you to spend some time focusing on your other guests.
Help your loved one and guests connect. Even if everyone is related and they know each other well, provide name tags for the benefit of your loved one. When guests arrive, identify them to your loved one, explain their relationship, and perhaps share a pleasant memory. Have a photo album at the ready to create a comforting context.
Be flexible when your loved one can't be. People with dementia may have good days and bad days. They may react to stimulation in different ways. If your loved one seems overwhelmed by the larger group, perhaps a guest or two could sit with them for a while in the space that you've set aside for your loved one to rest. Above all, cut yourself some slack when it comes to your hostess and caregiving skills—you're wearing two hats! One caregiver daughter reports, "I was worrying about whether everyone was interacting with Mom, and then I realized she was enjoying watching everyone even when she wasn’t participating … that's what really counts."
Make a list for Santa. People who wish to bring a gift for your loved one may ask you for appropriate and welcome choices. The Alzheimer's Association offers some suggestions for people at different stages of the disease. And if anyone asks you what you'd like, don't be afraid to ask for respite care. It probably comes as no surprise that the gift of time tops the list of most Alzheimer's caregivers.
Today more than 5 million Americans are living with Alzheimer's disease and other dementia, and upwards of 15 million of their friends and loved ones are providing care for them. With the aging of our population, this number is expected to rise dramatically—so it stands to reason that this is not the last holiday gathering your guests will spend with someone who has memory loss! By including your loved one, you're helping to model a new tradition: The spirit of the holidays includes a welcome for every family member and friend, no matter what their challenges.