My grandmother was a legend in her time. She is in the broadcaster's Hall of Fame, and was the first female CEO of a radio station. She came from a family of radio royalty, and met my grandfather while singing at her college radio station. She once winked at me and said he was dating another girl, "but I spoke to her." My grandparents got married right after college and she had four sons. She spoiled me rotten because she always wanted a girl, but never got one, and I was the first female grandchild. I think she secretly got a thrill when my parents moaned that I came back from a one-night sleepover at her place a spoiled brat. One of my favorite gifts from her was a large stuffed dog, an Afghan, with long hair I could brush.
Today when I visit Grandma in the memory unit of the assisted living facility, she thinks I'm a nurse.
I was her favorite and she doesn't know me anymore.
Apparently Grandma isn't eating, and staff is feeding her like a baby. She has recently lost her ability to walk. She doesn't have Alzheimer's, but some other kind of dementia that crept in slowly. She was terrified as she lost her abilities. Now she wakes up and doesn't know where she is. They change her diaper several times a day. Other people wander into her room, lost. One day another patient tried to crawl into bed with her because the woman thought it was her room instead of my grandma's.
Over several years Grandma went from being the accountant at my father's business to not knowing how to balance a checkbook anymore, to being lost when she visited my parents' home. She became incontinent and needed diapers. Finally she had to go into an assisted living facility. My grandpa went with her, and summarily died not two months later, and a week after after sustaining brain damage obtained after the doctors and my father ignored his DNR because they couldn't let go. Their last week together, after being married for 60 years, consisted of my grandfather yelling at my grandmother because the brain damage affected his anger control.
Since my grandfather died my grandmother's dementia has accelerated. She is losing capacities at an alarming rate. My grandmother that I grew up with is gone. Her body is there, but her spirit isn't. I've always been intellectually interested the right to die and bioethics, probably kindled by a Thomas Szasz essay that I read in undergrad; he said that if someone was in severe emotional pain, who are we to prevent their suicide? Isn't that a violation of the principle of nonmalificence?
It is no longer an intellectual exercise.
I think of Szasz and his critics now as I try and convince my parents to look at her directives and think about her wishes. I told them that one day a nursing home will come and ask about sticking a tube in her for hydration and feeding. Don't get started with that, I said, because you won't be able to stop. Just make sure she's comfortable. An act of omission is not as "bad" as an act of commission. If you put her in a religious nursing home they will not care what you think anyway and they can act in accordance with their religious directives. So be careful when assisted living tells you it's time for a nursing home.
My parents listened, and shrugged. They didn't want to talk about it. When my grandma dies, both of my parents will be orphans. My father said, "I'm sure she wants to eat but is just having difficulty."
When people are dying, I said, they don't want to eat. They don't feel hungry, which is why they don't eat. Are you going to artificially feed her?
Shrug.
Did you talk to the lawyer?
Shrug.
Is doctor Uncle coming in town to help make these decisions?
Shrug.
I know exactly what will happen by the way they are ignoring me - the very same thing that happened last time. These were proud people who built something from nothing. Why do they not see that my grandma -- a first female CEO, a feminist without ever saying a word about feminism -- is not here anymore? Would such a tough woman born from another, tough shtetl-dwelling Russian woman ever, ever, want that?
Doctors and grandpa's health care designate ignored grandpa's DNR and he died hating everyone and everything. They gained a whole week of his miserable life by doing that. One week. He was smart enough to die unmonitored in his sleep so, this time, no one could bring him back against his will.
Now Grandma, or grandma's body, is telling us she is nearly done. Why isn't anyone listening? Preparing? Why can't people talk about letting go? I love her just as much as anyone. I can't stand to see her like this. We treat our pets better. Why do we keep people and pets alive by extraordinary means because of our own issues? We don't want to be alone, away from them. We are cowards. We are afraid of the dark.
We need to stop being so afraid of death. Longevity is not quality. Misery is not virtuous. This foot dragging is not our finest moment - cringing, avoiding, denying, hiding - and it leads to acts to prolong suffering for people we supposedly love. It costs $5,000 a month to help my grandmother suffer.
A 1950s oil painting of my great-grandmother hangs over my grandmother's bed. I don't know if she knows who that woman in the oil is anymore. Great-grandma is wrapped in a fur stole with a rhinestone pin and cat's eye glasses, smiling. I never knew her. I wish I did. Supposedly she walked between villages back home to her parents in the middle of Russian winter on her wedding night because she didn't like her husband.
These are not women who appreciate having someone changing their diapers. So please stop torturing whatever is left of her spirit and make sure that when she goes, it's on her terms. Not anyone else's.
I wish I knew where that stuffed dog was. I wish I knew a lot of things.