My 93 year old mother has dementia. We started seeing the signs when she was about 85. She started asking the same questions repeatedly, as though they hadn’t been asked and answered.
When I accompanied her to one of her checkups the doctor explained to her that her family was concerned and sent her to a neurologist. She didn’t really understand why she was there, but she did all the puzzles, counted backward and answered the current events questions correctly. Only when he suggested further testing to establish a baseline for possible treatment did she become angry. She insisted that we were the only ones who saw this change in her. She was furious at us and never went back.
Gradually, the memory loss became worse and her behavior changed dramatically. When I called a few days ago she told me she had cancelled her weekly hair appointment, which she has started to do frequently. She will go days without showering. This upends everything I know about my mother and her attention to her physical appearance. In her article in the March 2018 Harper’s, “Out of Time. The Un-becoming of Self,” Sallie Tisdale says that “ often what we call a problem means a problem for the rest of us.” The reality is that my mom goes out less and less. The aides make sure she is clean and her appearance is fine for at home, and even for the occasional card game at the club. It disturbs me because I am measuring her by a past I wish were still true, not by her own needs and desires.
Friends used to tease that my mom was “sister Evelyn.” No curses ever passed her lips. Now she is nasty. She hates being helped or told what to do and will curse and slap away an arm offered to help her. ( My cousin tells me that my mom’s older sister, who always was nasty, became nice as her disease progressed.) I often tell her aides I wish they could have know my mom "before."
My mom hoards her mail and her books, creating piles that form a physical barrier around her. We have to distract her to go through the mail, leaving just enough to make her feel comfortable in her cocoon. She does still read and loves getting books as gifts, but I have no idea what she retains.
I have gotten used to the endless repetition and simply answer her questions over and over, trying hard not to give in to my own frustration. That’s the easy part. The harder part is the sense of loss. Tisdale says that children are supposed to evolve, but parents are expected to stay the same. In our “autobiographies” they are ‘fixed into a particular part of the story.”
In addition to loss, there is fear. Am I looking at a future version of myself? How long do I have? And finally, I wonder, is she is happy?
According to Tisdale, we assume that if people with dementia are different to us, they must be different to themselves, but current research says that this may not be true. People with dementia know they have memory loss, but see themselves as the the same person. Sometimes I see my mom literally hold her head, trying to retrieve some piece of information she knows is in there. She gets frustrated and angry. But mostly she seems content. Her world seems to get smaller every time I see her, but that doesn’t seem to matter to her the way it matters to me.
Researchers refer to our way of thinking about people with dementia as "the tragedy discourse.” The only lens through which we view dementia is despair. My mother is still able to tell me she loves me and that my phone calls and visits bring her joy. My challenge is to accept that and find joy in being with her as she is now.