Young Onset Alzheimer's Disease: A Little Christmas
“Haul out the holly. Put up the tree before my spirit falls again. Fill up the stocking. I may be rushing things but deck the halls again now. For we need a little Christmas right this very minute..."
When I was young, my mother sang Broadway show tunes to us as lullabies. When we were just hanging out on the weekends, cleaning house or just playing, my mom would have her records or 8-tracks blaring from the speakers.
She used to tell the story of my amazement at about six years old when my friends didn’t know the words to the show tunes like I did; in fact, they’d never even heard of “Just You Wait, Henry Higgins.” I couldn’t imagine.
So, I guess it only makes sense that as I got older, I purchased some of the same Broadway soundtracks. I seldom play the CD’s, but there are some days when I need the comfort of a lullaby, and I pull out the old Broadway show tunes to help me make it through. One of my favorite, especially at this time of the year, and in the last few years of my life, is from Mame – “We Need a Little Christmas.”
Christmas brings warm memories of my childhood and my family, of my mom doing all sorts of amazing things to make the holiday fun for my brother and me, which is probably why that song makes so much sense to me. Every year since mom’s decline, I find myself thinking, if I can just fill my house with the warmth of Christmas decorations and Christmas spirit, I will feel good.
But no matter what I do, Christmases have changed forever. My mom’s Alzheimer’s stole our celebrations with her. She doesn’t remember the things we did every year, and she certainly can’t do them anymore.
The best way for me to deal with her disease is to expect the worst so that I won’t be overwhelmed. But I have also discovered that you can’t push away the memories to save yourself from the pain. Sometimes it’s the preservation of the traditions that help you lean into the pain, experience it, and move on.
Rum cake was my mom’s Christmas specialty. When she first started exhibiting the symptoms of Alzheimer’s and was still trying to bake, she made a cake that wasn’t quite the same. So I asked for the recipe while she could still find it and took it home so that I could continue to bake it for the family.
Keeping with the traditions is also important for helping the rest of the family adjust, especially the care-giver or spouse of the one affected by the disease. Last year was the first Christmas my mother was in the assisted living home, so I took my children to my dad’s house to decorate his tree.
I knew it would be hard for him to do alone because it had always been my mother’s job, but sharing Christmas with him is even more necessary now for all of us.
Although my mother doesn’t know what day it is, or what time of year, I think it is good for us to spend the holiday with her, to decorate her room at the home and to bring her out for Christmas day, to be around all of the extended family. We have to keep in mind, though, that the experience for her can be overwhelming and watch for signs that she is getting over-stimulated. Sometimes she will rub her head like she has a headache or just make faces that signal distress. And we have to realize that keeping her there when she is clearly uncomfortable is not honoring her but serving our own selfish wishes.
Mother’s disease has also created in me a sense of urgency. I’m 25 years younger than my mother, so I wonder if I only have 20 years or so left to create memories with my children before the disease affects me. It motivates me with my children, to do everything I can to make those impressions on them while I still can. I know that it is not inevitable that I will end up with the disease or that if I do, I will get it as young as she did. But, like I said before, if I expect the worst, I won’t be so surprised and overwhelmed.
I still get sad, and I still have angry, crying spells, and the closer it gets to Christmas, the more likely I am to pull out the old show tunes to help comfort me.
I know that the memories are no substitute for real time with my mom, but they help sometimes to keep me sane. And if I’m going to forget them someday, if she’s forgotten them, then it’s all the more important that I write them down while I can.
“For I’ve grown a little leaner, grown a little colder, grown a little sadder, grown a little older. And I need a little angel sitting on my shoulder, need a little Christmas now.”
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Angie Kitchens Clarkson is a former high school English and journalism teacher, wife to an amazing high school coach, Michael, and mother to three active sons, Nikolas, Easton, and Avery. She lives in Texas, where she volunteers with her local Hospice and helps care for her 61-year-old mother with Alzheimer’s. Before moving to a smaller town, she wrote weekly columns about overcoming obstacles with an ill parent for the local newspaper, The Borger News-Herald.