This will be my mother's fourth Christmas in her care home. The care home do a very nice holiday dinner and party every year in December. We always attend that party. They have one version in the assisted living side (we are in the States) which is more elaborate, and another version in the memory care/dementia wing, which is more sedate. My mother can no longer tolerate too much noise or fuss, so it is helpful to have a scaled down version. For example, the AL party has a live amplified band, where the dementia unit party has a pianist playing soft carols in the background. Father Christmas comes to visit and he is fabulous and knows just how to interact with all the residents, and is careful to talk to each one. My mother lit up with joy when she saw him last year.
We used to take my mother out for Christmas dinner, but this is not advisable now. She cannot handle the wait in a restaurant--the last time we did this, she was convinced dinner was "over" after we ate the starters. In retrospect, we should have just left at that point. Any delay of more than five seconds in the food or drink appearing results in escalating annoyance and distress. Getting her there is physically more challenging, especially getting her in and out of our car. She has arthritis, and a bad left knee which she fractured a couple of years ago, and poor vision from cataracts and macular degeneration. She cannot see well in the dimly lit restaurant. She is not physically comfortable in their chairs. She cannot get in and out of a booth. She may need the toilet frequently. You get the idea.
Three years ago, my mother was anxious about doing Christmas gifts but did enjoy unwrapping hers, in between increasingly anxious comments about "doing the shopping" and "sending cards" and so on. She insisted we put up her small Christmas tree (the one she has used for at least 20 years) and fussed over that a great deal. Two years ago, she did not understand what the Christmas gifts and Christmas tree were. Last year, she loved the Christmas gifts and knew what they were. This year, I don't know what I will do or what to expect. So we have learned to be flexible, and to adjust our expectations. We have gifts tucked away, out of sight, so we can produce them if the moment seems right, but out of her line of sight so they won't confuse her. We make sure they are items she will recognize, if possible (for her, books, food, and clothing; perhaps also a blanket or soft toy). We make sure they are easily opened, maybe no wrapping paper, but just a box with a lid--I don't think she understands wrapping paper now, and her arthritis means getting into things is difficult. We make sure to reassure her that she already gave us our gifts (a topic of much anxiety every Christmas even pre-dementia, made much worse in recent years by the dementia related anxiety). I know to be ready for questions about (deceased) relatives and there whereabouts and when we are going to the family meal. I know to keep calm at all costs so as not to agitate or upset her.
I also know there may be surprising moments: at a carol sing before the meal last year, she shocked me by singing most of the words to most of the Christmas songs. Rationally, I know that even when spoken language is compromised or lost, people may still be able to sing as music (and the lyrics that go with it) is encoded and stored in a different part of the brain to spoken language, and the music part of the brain tends to be affected later than the speech part of brain. Rationally, I knew that, but emotionally, I was unprepared for how it would affect me (I cried then, and I cried in the car on the way home, and I am crying now as I type this).
So this year, we will probably attend the Christmas dinner at the care home. We will probably visit on Christmas Day with treats we will definitely give her, and perhaps some gifts, or perhaps not. We won't stay long, probably an hour or two at most, and will leave when she is tired or cues us to leave, even if we have only just arrived. I will know not to expect anything, but to be happy if she is content and not agitated. If she can have pleasure in the moment with a gift or cake or a song or Santa, that has to be good enough, and I have to accept that it has to be good enough.
But it does not erase the pain or the wish that no one, not my mother, not your parent, or sibling or child (or aunt or neighbour or cousin or anyone at all), should have to suffer from this most wretched and wrenching of diseases. That is what I would like for Christmas.
