Most of us (although certainly not all) enjoy the holidays.  We look forward to the hustle and bustle, family get-togethers, gift exchanges, decorations, and special food and drink.  But just imagine for a moment that you are whisked away to another planet where a holiday celebration is underway.  It’s noisy and confusing, and you have no idea what the holiday is all about.  You are asked to socialize with people (or alien beings!) that you don’t recognize, and to remember things about them even though you could swear you’ve never seen them before.  Everything you are offered to eat tastes weird.  You don’t know how long the celebration will last.  Several people there are annoyed at you, because you are not following their cherished traditions (whatever those may be).  And you are very, very tired.

 

Depending on the stage of dementia, this may resemble your partner’s experience of the holidays.  They may still recognize and enjoy certain aspects of the season, especially in the early to moderate stages of the journey.  As things progress, it’s likely that less and less of your usual celebration will make sense.  Some aspects of your holiday activities may be deeply distressing unless they are modified.

The first step in reducing holiday stress for your partner is to consider things from their point of view.  If they no longer recognize any of the neighbors, it’s unlikely that a big neighborhood gathering will be enjoyable.  If noise bothers them, being around 15 grandkids may not be the best choice.  If they tire easily, trying to visit all of the relatives in one day is probably not a great idea.  Think about your partner’s preferences, limitations, and capabilities as you plan what you will do.

This may be very difficult.  You may thrive on cherished family traditions, and discover it is a major loss if you can no longer participate.  There may be some compromises that will work.  A key factor is managing your own expectations.  One year, we went to my daughter’s home for Christmas.  Charles was still in the fairly early stages of Alzheimer’s, but his ability to produce and understand language was impaired.  I had to realize that his sitting alone while the rest of the family conversed was not rudeness or a lack of caring – he simply didn’t have the skills to be part of these conversations.  My strategy was to enjoy talking to the family as I usually did, but about every 20 minutes, I would go over and sit next to Charles, who seemed content to watch the Christmas tree lights.  I asked how he was doing, brought him food and drink, and perhaps told him a single highlight of the conversation I’d been enjoying, in simple language.  He did not feel neglected, and I was still able to catch up with our family.

Consider what aspects of the holidays may still be fun for your partner.  Music is often a good bet, and a short community concert might be an enjoyable activity.  If that is too much, watching a holiday special on television or listening to favorite seasonal music could be an excellent option.  Perhaps you could work on a simple craft or baking project together, so your partner is able to give a homemade gift.  Holiday lights may still delight, but they also may be confusing or disorienting.  Take your cue from your partner’s reaction.  If you are still traveling, build in some time for rest and recuperation between family visits.  If you are welcoming people at home, let your partner know it is okay to go into another room for a while if the activity level is overwhelming.

Families often gather only at the holidays, so some relatives may not have seen your partner for a year or more, and may be shocked or in denial about the changes that dementia has brought during that time period.  I sent out a family email periodically, updating close family members on Charles’ status and giving examples of things he still enjoyed doing, and things that were challenges.  When I knew people were coming to visit, I offered some suggestions about communicating with Charles and also helped them to understand behaviors that might otherwise have upset them, such as his lack of emotional reaction in some situations.  I suggested things that they might be able to do with him if they were interested.

Remember that your partner is probably still attuned to you emotionally.  If you are stressed and upset, they will be, too.  If you have moved into a caregiver role for activities of daily living, factor that in to your holiday plans.  Perhaps this is the year to give your grandchildren gift cards instead of embarking on a massive shopping and wrapping project.  Could you buy a bottle of wine for your neighbor instead of baking cookies?  Can you enlist some additional help from a family member or paid caregiver so you can run errands or have a little time to get a haircut or relax with a friend?

If you are the person who takes on much of the work for holiday meals or other traditions, scale back by asking family members, “What is the one thing that is really important to you about our holiday meal (or other tradition)?”  Then focus on those few items and omit or take shortcuts with the rest.  If you are truly at the limit of your energy and coping abilities, just say no.  Either other family members will take over your usual tasks, or they will have to do without this year.  That’s not being selfish – it’s being realistic and allowing you to support your partner as well as possible.

If your partner is in a residential facility, the facility will most likely have some sort of family-oriented celebration which you can attend, and to which you can invite a few family members, if appropriate.  Think of ways to make it special and festive for your partner and yourself.  Bringing a special dessert from home to share with some other residents, spending extra time with your sweetheart, or decorating their room with a few simple objects may help.

Because things can change rapidly with dementia, be prepared for some disappointment.  For Charles’ last Christmas, I made elaborate arrangements for a wheelchair van to pick us up at the Adult Family Home where he spent his last few months and take us to a nearby Senior Center where we had enjoyed many activities.  A favorite musician was playing guitar and singing, and I thought Charles would enjoy the music and the familiar faces.  Sadly, he was past that point.  He sat in his wheelchair, unresponsive, and just seemed tired and disconnected.  I tried, but it just didn’t work, and quite frankly, it was heartbreaking.  The prior Christmas, though, he was able to enjoy several activities, and with accommodations for his energy level and ability to participate, he had a good time.

The bottom line: Think carefully about what your partner might enjoy for the holidays.  Try to find some time for yourself, and watch your own stress levels.  Be prepared to change your plans, modify traditions, cut activities short, and ask for help.  Do your best to focus on the positive and just be grateful that you still have your sweetheart at your side.