Dementia

 My sister died on Sunday. She moved in with my mom 12 or 13 years ago, after the death of her second husband. Shortly after, we were told that she was suffering from semantic dementia. The first symptoms were an inability to remember words, mostly nouns, including proper names. She was still very verbal, but had to express nominal concepts with periphrases. If she couldn't remember the word "bishop" she would say "the important person." She also had lost executive function: think of the ability to cook a meal or even a single dish, and keeping track of the components of that task. She didn't drive any more. She could still play organ, and in fact kept playing in church for several years. They bought her an organ for the house, which she played for several years. Eventually, they sold it back to the vendor where they had gotten it from.  

My mom did fine with care giving in those early years. At some point, early on, Debbie reconnected with her high school / college boyfriend, who still lived in town. (Debbie had lived in other states her entire adult life after college.) Debbie and Norbie married, Norbie with a full consciousness of Debbie's diagnosis and prognosis. They lived between Norbie's mom's house, and my mom's. Now there were two caregivers for Debbie, and they did well. 

Debbie continued to decline, losing the ability to read, for example. She could still talk, but with increasing lack of fluency. Then, Debbie's daughter Janet (JJ or Janet junior, since my mom is also Janet) moved from Utah to live with her mother and grandmother. Now there were three caregivers: Janet, Norbie, and Janet Jr.  They did ok it seemed, but the younger Janet has a chronic fatigue condition with limited ability to maintain her energy. She is a nurse so there is no question that she could have taken care of her mother, if she had had more energy. Norbie is also having health issues. My mom is fine, the healthiest person in the house. 

So a fourth caregiver enters the picture, Blanca, an energetic Mexican woman whom everyone loves. Debbie is declining, losing ability to speak more than "yes" or "no" and to feed herself.  Norbie is declining too, and Janet Jr continues to struggle with her fatigue. Eventually, Debbie loses all ability to function, cannot even stand up by herself. At the beginning of 2024, Norbie calls me and my brother saying he has less than a year to live. He is on hospice (or palliative care) and so is my sister. Blanca has purchased a taco truck in early 2024, and quits to run the truck. Debbie is in and out of the hospital for various things most of the summer. About a week before she died, she started refusing food and liquids, so she died basically of her own volition, such as it was.

I never had the sense that she was not "herself." The dementia was not a loss of self, as some people experience. She was often quite happy, with a beatific smile. I think Blanca leaving was a factor, but she had already outlived the prognosis of five to ten years after diagnosis. She was 67 when she died, so it was almost a normal life span. The last five or six years she had very little ability to do anything, but she had some happy years with Norbie. She was well taken care of, first by Janet I, then by Norbie, Janet II, and Blanca. Every time I saw her, roughly at 1 year intervals, she had lost more. I always thought each year was the last time I would see her.  This time I was correct. 

I thought I had done my grieving already, but such is not the case. I'm doing a Buddhist chant for here every day for 49 days.  Really, it's more for myself. Aside from my mom, she is the person I have known the longest. I have never not known her or had her as part of me, so I feel that a part of me has been torn away.  It's not that I am inconsolable or bitterly angry, just that I feel this as a significant loss. The fact that this was also an end to suffering is also in my mind. Prolonging her life did not make sense either, after so long and agonizing a decline.