Well-meaning family and formal caregivers sometimes start to “overdo” for persons with dementia. “I don’t want her to get hurt” or “I don’t want him to feel embarrassed” or “It is just so much easier if I do (fill in the blank).” What people do not realize is that once a person with dementia forgets how to do an activity or task, he or she is rarely able to relearn it. There just aren’t enough nerve cells to knit together a new memory.
When I first met my mother-in-law with dementia, she was sitting in her bathrobe in a recliner. She had just lost her husband of 60-plus years. She was a frail, sad, birdlike woman. She needed a walker and could get to and from the bathroom. Her son was extremely concerned that she would fall and injure herself, so he constantly told her to sit down. Like every 10 minutes. If he found her standing or walking around the house, he would fuss: “Go sit down before you hurt yourself.” She was miserable.
When I became her caregiver, I encouraged her to move around our house. I wanted to find things that Mary would enjoy doing. At the time, my husband traveled extensively for his work and was gone for days at a time. One of the first things I started was weekly outings, starting with a shopping trip for an updated wardrobe. Because Mary had lost so much weight, everything she owned was several sizes too big. Mary was thrilled; she began getting dressed every morning and sporting her new outfits.
I discovered that Mary had been an avid and talented gardener. She would talk about her flowers and plants for hours. Inspiration struck. I put several plastic tubs on my back deck and we planted herbs and flowers in them. We went out every evening after dinner and watered or weeded the tubs. Then we would sit out on the deck and read together. Mary started washing dishes and helping with light housework. She gained weight, became stronger, and seemed much happier. She still had memory glitches, but having her on a schedule and keeping her active helped her to stay fairly independent with her own care.
When my husband returned from his business trips, he would fuss at both of us because of Mary’s mobility. “She is going to fall and break something.” What he failed to realize was that his “care” was not only making her more unhappy and depressed, he was increasing her risk of falling because he was keeping her from walking around regularly. He was stealing away her ability to do things. When a person with dementia stops doing a task, they risk forgetting how to do that activity. As the disease moves on, they are unable to remake those memories. When I encouraged Mary to make her salmon patties or to help with the flowers, I was keeping her task memories alive. I was pushing away the day where she would become dependent on others for her care.
And speaking of salmon patties, Mary made them every Friday for as long as she lived with us. Sadly, she died from congestive heart failure eight months after I became her caregiver. I’m grateful for the experience because it humbled me and enhanced my ability to help family caregivers in my clinic.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.