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Beautiful, challenging Christmas time?
I am looking forward to Christmas!" exclaims my little daughter, beaming joyfully at me. Normally, my three children like to quarrel, but in their anticipation of Christmas, they are absolutely united. However, I face this festival with very mixed emotions. With anxious thoughts about how we can celebrate well so that my mom, despite her Alzheimer's, can enjoy it, and how I can avoid experiencing so much stress and tension again.
A look back at the past years reminds me that my mom actually always had wonderful Christmases, even if she probably wasn't aware of why we had come together and what we were celebrating. But she enjoyed the company, ate well, drank, and laughed. To be honest, I don't have to worry about my mom but rather ensure that we, the caregiving relatives, get through this time well. Looking back shows that the holidays have so far been quite a multiple burden for me: there are the children, my mom who needs care, the gifts that need to be taken care of, the household, and my job as well. There's hardly any time for peace and joy during my pre-Christmas and Christmas season. That has to change somehow, I think. What can I change for this Christmas celebration so that it's not so difficult and stressful, but rather beautiful?
1. It will be different from before.
Christmas is also a time of great expectations and wishes. While children look forward to gifts and wish for toys, books, or video games, I expect harmony and closeness. I imagine a cozy family idyll together with the whole family, as is suggested to be normal in advertisements, for the Christmas season. Clearly, I can only fail to meet this image. For one, my mom is not the storybook grandma who plays with her granddaughters. There's a lot of love, but my mom has advanced Alzheimer's disease. Relying on storybook illusions can only lead to bad moods and disappointment.
I remember a Christmas a few years ago. I had brought a gift for my mom and wanted to open it with her. I hoped so much that she would be happy about it and that we would both have a nice moment. It was only later in the afternoon, but she seemed tired. I sat down next to her in the armchair and held the gift out to her. She didn't even look at it. Then I started to unwrap it for her, wanting to show it to her and hoping to bring a smile to her face. But she paid no attention to me or the gift – and I remember that this just hurt. I was disappointed because deep down I had hoped it would be like it used to be.
My first resolution for this year: to go into this holiday without great expectations and not to expect anything from my mom that she simply can't accomplish because of her illness. Dementia doesn't take a break at Christmas either. If I expect that we will have as much joy unpacking gifts as we used to, then that will mainly make me sad.
2. It doesn't have to be perfect
Christmas used to be a time of roast goose and duck in my family's home. My parents spent a lot of time on preparations and invited the whole family for a feast on the first holiday. It was a long-standing tradition that we would meet at their place during the holidays, and of course, there had to be a roast. "That's just part of it," my dad would often say, and he would spend the whole day in the kitchen taking care of the goose. He wanted everything to be perfect, and even though I don't like goose at all, I loved this ritual. The guests stayed until late in the evening, and those were wonderful hours. Somehow perfect, at least that's how it seems in my memory.
Conjuring up a big menu, pampering your loved ones, and everything beautifully arranged – that's how the holidays were for us. And when Mom could do less around the house, we tried to take over and create these perfect Christmases. I wanted my children to have the perfect Christmas, I wanted my parents to be satisfied because it's "real Christmas" – and ultimately spent most of the time stressed between the kitchen and the dining room. My resolution for this year: It doesn't have to be perfect! Before it becomes too much for me, we'll have soup or pasta with salmon cream sauce for lunch. Everyone likes that and it's quicker. And yes, we can order pizza on the first day of the holiday. Christmas perfectionism is being renounced this year, that's my goal. And: make it easier for me.
My mom doesn't care about having the perfect Christmas, because if that means having a stressed daughter and a stressed husband, it's not worth anything to her either. Our tension and stress would definitely affect her. Although she can no longer communicate with words, she senses our feelings very sensitively, which I notice again and again in different situations. What benefits my mom with dementia: peace and closeness, music and laughter—and I can only provide that if I'm relaxed and avoid Christmas stress.
3. It can be quieter.
In the past, we always had a pretty full house during the holidays, and all the family members would gather at my parents' house. In recent years, it has become noticeably quieter at my parents' place, as many acquaintances and friends have withdrawn. My parents are happy to have visitors during the holidays, especially from their grandchildren.
What we noticed shortly after Mom's Alzheimer's diagnosis: Large gatherings are often exhausting for her. Initially, this was evident as she became very quiet. Communication is difficult for people with dementia and increasingly becomes so. When many people came together, it was hard for my mom to follow the conversations and participate. And even now, when she can no longer actively take part but is still present, larger groups are rather tiring.
Therefore: We will divide the time again, just like in previous years. Not everyone comes on the same day and at the same time. My mom benefits much more when she can engage with one or two people rather than having ten people in the room. And this calmness does us good too. Fewer visitors allow me to take small breaks, even if it's reading a book for half an hour. It will do me good and ensure that I have more energy to take care of my mom.
4. It's okay if it (also) becomes sad
When the holidays become quieter and there is actually time for reflection, it also becomes apparent once again that life has changed and caregiving plays a major role. That the dear relative has a progressive illness and this dementia cannot be cured. Memories of past Christmases and the beautiful moments when mom was healthy come back. And of course, that makes you sad—and that's okay.
Being sad and saying goodbye is part of a dementia illness, again and again, over a long period of time. This farewell is also referred to as "ambiguous loss," and dealing with it is indeed a challenge for relatives. If the end-of-year melancholy adds up, it may happen that one becomes (more) sad during Christmas. I think a lot about the past and also become sad because some things just aren't the way they used to be and how I would wish them to be.
My resolution: To allow my feelings. These feelings are part of accompanying a close person with dementia. It's a gradual farewell, and again and again, you have to say goodbye to things. Accepting that and acknowledging the feelings usually helps more than downplaying or hiding them. In such moments, it helps me to write down these sad thoughts or share them with a friend. And I often realize: When I share it or put it on paper, it gets a little easier.
5. It helps if the network (continues to) function.
During the holidays, most facilities are closed, including my mom's day care. It's actually not a problem, and my dad also enjoys it when mom is at home and he doesn't have to stick to the facility's schedule. However, it slightly disrupts the usual routine and suddenly, the breaks from caregiving are also missing. For my dad, taking care of my mom is a 24-hour job, just like it is for many caregivers. Surveys and studies repeatedly show how much stress caregivers experience and how burdened they are, especially those caring for people with dementia.
Pauses and breaks are important to have enough energy for caring and nursing. To make this possible during the Christmas season, it's good to continue utilizing support and assistance services so that the care service continues to come and alternatives are found for services that cannot take place during this time.
It helps if the network continues to function and not just a single caregiver shoulders the burden. Here, the Christmas holidays can also be an opportunity to try something new, for example, directly asking a neighbor who would like to help if they would take the dependent relative for a walk or invite them for some cookies. Family members also sometimes have more time; the children are at home and might enjoy spending time with grandma and grandpa.
I often think I have to manage everything on my own. But caregiving and worrying is not something one can do alone, not even at Christmas – and it feels good to seek support and take care of oneself.
by Peggy Elfmann (last updated on: 12/19/22)
