One of the most arduous challenges of caring for a loved one with Alzheimer’s is the “changing rules of engagement.” He/she has always enjoyed distinctive activity, has communicated in rather predictable patterns, and has contributed his/her part to the wellbeing of the family and community. But the patterns begin to change and new expressions may be uncharacteristic, unpredictable, and short-lived.
Even so, in our experience we came to believe that clues to the “new rules of engagement” could sometimes be found. When we thought about the clues, we could sometimes connect with our mother in surprising ways. Out of this process, I came to accept some insights which may help in efforts to connect with the Alzheimer’s patient to contribute to feelings of inclusion, peace of mind, and self esteem.
Some of these insights (for me) include the following concepts.
1. Every behavior, however bizarre, is rooted in a search for a sense of safety and well-being. While we aren’t skilled at psychoanalysis, nor do we have the time to analyze what’s going on in every case, we can think about who the person is and what might bring him/her comfort.
2. Our standard for “productive activity” cannot apply to the patient with advancing Alzheimer’s disease. (While dad once made elegant patio furniture, he is happy now sandpapering a rough hewn plank.)
3. Suggested activities to replace distressing ones should be connected to the loved one’s values, interests, and what some call “procedural” or process memories. What did he/she enjoy, excel in, repeatedly perform, or expect of himself?
4. In verbal communication efforts use simple, straight-forward language. Options and questions may be acceptable at the outset, but in time become confusing and ineffective. Statements about “what now” are more productive when made lovingly, firmly and respectfully. Trying to convince, correct or “set her straight” are counterproductive, and only lower an already sinking sense of self.
5. When a loved one’s questions about distressing subjects are aroused, answers should be in the context of his/her world (reality), and should be given in the spirit of assuring and comforting. Sometimes this involves entering his/her world of yesterday and communicating a “therapeutic truth,” which may in fact be out of synch with present reality. Our mother asked painfully and tearfully about where our father was, years after his death. Finally, we learned to say he was at the farm, at the stockyard, etc. We made sure our answers were in keeping with her experience (and his) and her values. We set our watches by her “real time.”
6. Sometimes the cry is simply for inclusion, presence, and reassurance that “I am loved.”
The tone of this article may suggest that we were always able to provide a balm for our mother’s distress, questioning, gritting of teeth, pacing, anger, doleful responses, anxiety, sundowner episodes, and all the rest. Not true. We had our share of defeats in our battle with the merciless reaper. But we tried mightily to lift Mother from her destructive thoughts and activities to a better place.
Our mother’s inner clock had always been calibrated with her family, nature, and the church and spirituality. Therefore, we tried to reach into these areas to pull experience we thought might comfort or delight her. For example, she loved birds. We harbor a memory of her standing at her kitchen sink washing dishes and watching her birds as they frolicked just outside the window, and flitted among the trees and bird feeders, always amply supplied. When she seemed to be slipping beyond our reach, we bought an Audubon Birds coloring book for her. Often we used the book to pull her away from painful memories and upsetting behavior.
One such experience still grips me. I gave her the coloring book, spread out the crayons, and sat beside her. I opened the book to a colorless sketch of a goldfinch. I explained we would make the bird beautiful with bright colors, whatever she chose. She could not choose the crayons. I coaxed, to no avail. Knowing she had been a perfectionist, I knew immediately she feared failure, “not doing it right.” Rather than hand her a crayon, I said, “Mother, make the bird a color you think is wonderful.” Even to this day a purple “goldfinch” flits across my mind, carrying memories of how reassuring it was to see our mother smile when she recovered, if even for a moment, a fledgling expression of lost self esteem.