There was a special section, many pages, many words, on a woman who has Alzheimer's disease in the Sunday NYTimes this weekend. I saw it and my heart sank. It fell into the basket of "things I should read but I really don't want to". My sister called and left me a message that was simply "do I have to read this? did you?".
I did read most of the article. But it was pure self-discipline. I did at any point think: wow, that's a good insight. Nor at any point did I feel like I was going to cry for the sadness of it all. The article was well written. If you have never interacted beyond greeting a person with AD, you would learn something.
The woman was professional, former nurse, in the health care biz management. She had just retired, and clearly had health care insurance and enough money to keep living in New York City. She had a loving child and a supportive spouse. She found lots of resources in Manhattan. When one counselor suggested something she thought was absurd (fake it and don't tell anyone), she immediately stopped seeing her and found someone else.
There was some insight into how AD impacted her. What she could and could not do, how it progressed from early stages to mid-stages. Some of the stories were ones I had lived. Others she seemed to be doing far better than my mother ever did. And there were none of the really horrible stories, like when my mother was wandering around in the middle of dangerous parts of the city with everyone frantic and the police looking for her. Or when my mother went through angry phase and bit a nurse and hurled the most vile and hurtful insults at me and my sister: "I can't believe I carried something as horrible as you in my womb for even a month, let alone nine". In retrospect, my mother was angry and mean, but very creative at this time. The NYT story recommend a good book: The 36-Hour Day by Mace & Rabins. If you are taking care of, or even just interacting with someone who takes care of an AD patient, this is an excellent book.
I just had no emotional resonance with this piece. It's not that I don't enjoy other people's stories about surviving academia, science, toxic labs, evil department chairs, etc etc. But this did not move me. I read the book Still Alice by Lisa Genova and cried through large swaths of it. I felt the book had captured the voice of someone losing their cognition, their mind, their self. In part, I know its because my Mom is far beyond this stage. And I see women, every week, in my mother's unit, who are at all the stages described in this story. And every week, or 2 or 3 times a week, I cry when I leave my mother. I cry for the waste of life, for the mental debilitation, for the loneliness of these women. Whether or not they have family and people visiting, and holding their hands and them, this disease makes these people cruelly alone.
So I told my sister, no she didn't have to read it, that it would not be a good use of her time. My sister was relieved, and that was that.