Holidays are meant to be a time of joy, celebration, and tradition, but they can also be stressful and hectic. Caring for a person living with dementia can bring additional holiday stress to a caregiver. How your loved one participates in your holiday rituals will need to be adjusted. I’d like to share tips and strategies that can help a caregiver make the holidays as manageable and as joyful as possible.
Start by resetting expectations, for yourself and everyone else involved. Recognize that you won’t be able to do everything as you used to—whether it’s hosting the family gathering, attending gatherings or events, or traveling to a beloved vacation destination. This is a good time to think about what your most cherished holiday traditions and events are and focus on how to adjust them for your current situation. Talk to your family about how celebrations may need to change. It’s also helpful to adjust your expectations of the person living with dementia and accept that they may not remember all the holiday traditions, knowing that they may not be able to participate in the preparations, conversations, or rituals as they did before.
Simplifying will be your friend. It’s hard to think about missing out on celebrations and rituals, but too much activity will wear out your loved one and can cause a catastrophic reaction. Choose the celebrations and rituals that are most important to you or the person living with dementia. Consider not doing more than one thing a day and prioritize events that happen at the best time of day for your loved one.
Simplify your environment. Decorations change the look of the familiar environment and can be confusing or disorienting. Blinking holiday lights and decorations that move may distract or startle. Ornaments and table decorations may be confused with food and become a choking hazard. Candles are important in holiday rituals but, for a person with dementia, they can become a safety hazard. You may want to substitute electric or battery-powered candles for real ones. Choose a few decorations that mean the most to you and your loved one and put only one or two in a room so the look of the room doesn’t change too much.
Simplify your celebration. If you continue to host the holiday gathering, delegate tasks to other people. Make the meal a potluck or order a premade meal. Change the time of the event to your loved one’s best time of day. Shorten the length of the event you’re hosting. Consider letting the next generation take over the celebration. I know of one family that combined several of these tips—they changed their holiday celebration from a dinner to a lunch and shared the cooking duties. The primary caregiver, the mother, made the main dish and dessert while the three adult children took on the family’s traditional side dishes. A fun twist was, after the holidays were over, the eldest daughter worked with her mom to collect those holiday recipes and additional ones from the past and created a cookbook for the family. She had smartly taken pictures during the celebration to use in the cookbook. Not only did they have a lovely celebration, they now had the cookbook to remember it.
Adapt traditions to current constraints, but take advantage of technology to make these traditions work. For example, technology allows you to watch holiday movies, concerts, theater, or religious services online at home. Since COVID, many events and performances have had livestream options for those who cannot attend in person. And with on-demand television, you can probably pull up a favorite holiday movie, show, concert, or performance whenever you want instead of waiting for that one time a year the movie or show might be aired. You can even plan a virtual visit with friends if you can’t join a gathering.
Keep an eye on how your loved one is doing throughout the holiday season. Allow your loved one time to rest between events and create a quiet space for them to retreat to during a gathering—often they can successfully be part of a holiday gathering if they have a quiet space for visiting one or two people at a time.
Set expectations for people coming to the celebrations or events. Let them know ahead of time how your loved one is doing and provide them with tips for interaction. I had one family that used their annual holiday letter to update family and friends on how the person living with dementia was doing. If you are going to a celebration, let the host know that you might need to leave early in case the event becomes overstimulating for your loved one. If people are coming to your home, think about setting up appropriate activities that people can do with your loved one or provide pictures for people to reminisce with them. One family I worked with used name tags at the family gathering, and they also each wrote the name of their favorite holiday song on the name tag. These were helpful in orienting the person with dementia to everyone, and the name of their favorite song made for a fun conversation piece.
Include your loved one in holiday activities as much as possible. Modify the activities based on the ability level to encourage meaningful participation. A person living with dementia can participate in baking cookies, playing games, placing self-stick bows on presents. Remember to focus on the process not the product—including a person living with dementia in an activity is more important than the outcome of the activity. Dementia does not seem to affect the areas of the brain involved with music memory as much as other areas. This means people living with dementia, even in the late stage, may recognize and enjoy holiday music. You may see them sing along to holiday music.
As a caregiver, you may experience a variety of emotions during the holiday season. Acknowledge what you are feeling but find ways to take care of yourself so you don’t get overwhelmed by those emotions. Caregiver self-care is more important than ever during the holidays. You wouldn’t let the battery of your mobile phone run out, so you shouldn’t let your battery run out either. Set limits for yourself and know that it is okay to say no. You don’t have to live up to other people’s expectations. Make sure that people understand your caregiving situation and let them know how they can be helpful to you. I had one caregiver who had been reluctant to ask her kids for help, but she knew her kids were going to ask her what she wanted for Christmas. She decided this might be a good opportunity to try something different, so she made a caregiver holiday wish list. She included things like getting two hours, four hours, and a full day of respite time, specific household chores she needed help with, and errands that they could complete for her. Her kids responded positively, and over the following months, followed through on everything she asked for on the list.
Hopefully you have heard some tips and strategies that will help you find balance and joy in the upcoming holiday season.
Stefanie Bonigut, LCSW