Tradition is important for memory. Sometimes people who no longer know our names still know the words to childhood prayers and carols. They don’t recognize our faces but they can distinguish photos from Christmases past. They don’t know what day it is (even though you have told them five times) but they feel the celebration, the positive vibes of family and friends together. However, not all traditions are viable when dementia is in the mix.
Tracey and I love holiday light displays. Some of our very first dates were spent driving around greater Cleveland looking at light displays, from the understated red bows and candles of Gates Mills and the made-for Hallmark lights of Chagrin Falls, the City of Cleveland display on Public Square and the all-out, over the top Nativity with Rockin’ Santa, Rudolph and the Care Bears in North Olmsted. I love them all. We have made an annual tradition of dinner and lights for 20 years.
Three years ago we took a bucket list trip to Europe and spent Christmas in Paris, City of Light. The Eiffel Tower sparkled, the ferris wheel on Place de la Concorde spun gaily, the pyramid at the Louvre was magical. Alas, Paris is also a city of car horns and my first lesson that flashing lights, loud busy streets and dementia don’t mix. We walked home along the Champs Elysees, Tracey trembling, in tears and jumping at every single car horn, every boisterous shout. We both felt shredded by the time we got home.
Two years ago I got my second lesson in holiday brain explosion. We found a neighborhood on the south side of Cleveland that is famous for its light display. Each yard was more over the top than the next — thousands of lights, lots of people, loud music. Tracey barely kept it together, her aphasia kicked in and she could not utter a word the entire way home and for much of the next day as well.
Last year we blew it again and tried the Cleveland Zoo’s “Zoo Lights” holiday extravaganza. There were acres of multi-colored, blinking lights and hundreds of children running around underfoot, their parents calling for them in the dark. Elves caroled, the trolley bell clanged, music blared. Five minutes into it we realized that this was a totally, incredibly unbelievably stupid idea. Another brain explosion.
We all go through the dementia year as best we can. Maybe the disease is progressing, maybe it has plateaued and things are going fairly well. We figure out what works and what doesn’t. We develop a daily routine. We may even begin to think we can handle this. And then the holidays roll around and we forget everything we have learned. We toss out our routines, we eat too much and exercise too little. We import family and friends from far flung places and we get extra busy. We forget that life has changed. One of our key people doesn’t think, doesn’t process information in the moment and doesn’t recall events like she used to do. And so our well-loved traditions derail, as does our Beloved, and it’s no fun at all.
It doesn’t have to be this way. We can adapt our traditions to our dementia life, downsize them a bit and lower our expectations. Yes, Big Date Night in the middle of Santa’s Wonderland Extravaganza is in our “Used To Do” memory book. But we will still go on a holiday lights date this year. It might be a stroll around our own neighborhood to admire our neighbors’ displays, or it might be a shorter drive along some of our local streets on our way to pick up takeout but we will find a way to make it special and ours. A new memory of an old tradition.