Sandra Savell, author of Dear Clueles reflects on the holidays caring for her mother with Alzheimer’s and gives advice for handling the holidays with dementia.
The Holidays with Alzheimer’s: Christmas Fear
Christmas was budget-wise during my childhood and teen years. Our one and only decoration was our Christmas tree. I lived in a 628 square foot half- duplex with my single mother for 23 years. There was no room or funds for any extras during the holidays.
Fast forward thirty years to a new family unit: myself, my husband and my mother, now suffering from moderate Alzheimer’s. Our home was four times the size of the one I grew up in; with our combined marital income providing us with the means to decorate and collect Christmas treasures. And we did. In each and every room.
The first year Mom was with us, I was excited to prepare a beautiful Christmas for her. I was convinced that the festive atmosphere I had always craved was a desire she shared with me. I couldn’t have been more mistaken.
I decorated on a day Mom was out of the house with her caregiver. When I finished decorating the inside of my home resembled a feature in an interior decorating magazine. I was both proud and happy to give her a beautiful setting for the holidays.
One can imagine my reaction to her looking around the house, putting her hands on her hips and snarling, “Well, you sure know how to p#*s away your money, don’t you?” I was unprepared for and dismayed by her reaction and her rejection. Mom never said another word about it. However, I took down all my decorations and packed them away very quickly after Christmas.
The following year I changed my plans for Christmas. Less decorating and more baking and cooking. I invited my employer over for a baking day as we are both of Slavic background and were wanting to enjoy nut bread (a yeast bread with a filling of walnuts and honey paste) for the holidays.
The day we baked was busy and fun (for us). We chatted, watched Christmas movies and listened to carols in between dough risings. My mother spent a lot of time with us. As the day wore on, I noticed her agitation and confusion rising. I attributed it to sundowning and simply being tired by the day’s activities.
After we finished baking I went outside to work on the decorating of the front yard. I noticed my mother watching me from the front window. I would smile and wave. She never waved back, nor did she smile.
But from that day forward she spent many of her days trying to reach her mother (died 35 years previously) and her sister (gone 15 years) by phone, not comprehending that they were no longer living. Her confusion grew worse as did her paranoia, wandering, fear and agitation. Before Christmas was over, she had forgotten who I was and her focus was on finding her twelve year old daughter, Sandi. (Me…38 years earlier).
After the holidays were over I investigated this behavior by reading accounts of holidays with Alzheimer’s patients. Imagine my feelings when I discovered that everything I did to give my Mom a lovely holiday had the totally opposite effect.
Instead of providing a festive atmosphere for my mother, I provided the fodder for memories of days that were – in reality – long gone; but in my mother’s mind, were current events.
By the time the next Christmas rolled around, my mother was in an assisted living for Alzheimer’s patients. We took her out to a restaurant for dinner that year and immediately realized that the crowd, the noise and the overwhelming choices of food on the buffet were too much for her to process. She did not enjoy herself at all. It was our last dinner out of her assisted living.
In retrospect, I would have done things much differently to provide a calmer Christmas for my mother:
•I would have chosen Christmas music from her era such as Perry Como and Andy Williams.
•I would have cut down our decorating by more than half so that there would be less visual stimuli.
•Understanding that aromas from the past can evoke emotions/memories from the same time would have encouraged me to choose other recipes to bake instead of the Slavic treats from her past.
•I would have chosen an easier dinner menu for Christmas Day and not spent the day in a cooking frenzy. Really…are so many sides really necessary?
•More old Christmas movies and less holiday activities outside of the home.
•We would have accepted fewer invitations to functions and spent more quiet nights at home instead.
I wish I had a “do over” of my last three Christmas seasons with my mother. Even knowing there is always a learning curve with an Alzheimer’s patient; ratcheting down our celebration would have given her a better time all the way around. No guilt, though. Just sharing what I have learned through experience with others.