I have been thinking about dying and it’s really confusing to me. The first thing that happened when I told people I’d been referred to Hospice was that the conversation would come to a dead halt, and I don’t understand that, either. Why do people stop talking when the subject turns to death? Somebody drop me a note and explain that to me please.
Hospice decided not to accept me. As far as I can tell, that’s because they lack the medical expertise to understand the course my kidney disease is going to take. It’s a rare disease, and me and a doctor who left town are really the only two people who understand it. (One web site lists the occurrence as 1:25,000 but that’s actually referring to a different kind of diabetes insipidus.) So I’m kind of on a self-determined hospice without any guidance.
It’s not so much that I’m dying as that I’ve decided to stop living, which is what hospice is—it’s a renunciation of all efforts to continue your own life, which is kind of weird.
If you no longer cared one whit about living, how would it change your life? What would you do differently? And don’t tell me that you’d move to the South Sea Islands and live on the beach. By the time you make the decision to not live, you don’t have the energy to get to the airport. “Grow where you’re planted” now becomes “Die where you’re rooted.”
My mom was referred to Hospice some years ago, then she was troubling about having to go to her cardiologist’s office for a routine stress test that always was unpleasant for her. “Mom,” I said, “all you have to do is tell them you’re in Hospice, then they will drop you like a hot potato.”
“Hm-m-m,” she said, “I’d never realized that.” And that’s part of how the trip to dying is: you realize stuff that you never thought of before, like now I can eat all the ice cream I want to and not worry about the consequences. For a decade, my daily ice cream intake has been limited to half a cup to keep my blood sugar down. Now I can eat all I want—but I still only eat half a cup. Go figure.
One thing that has changed is my thinking: I don’t do it much anymore. There came a time when the place in my head that used to be taken up by thinking became occupied by a kind of white noise. There’s just a kind of buzzing where there used to be ideas. It’s not unpleasant. I just lie in bed and listen to music. My first choice is WCNY classical music, which is kind of funny because my father was a college professor and it seemed like every weekend of my childhood I got dragged to some classical concert and hated it. Now I really like it. Go figure.
I knew a fellow who loved music and his wife. His wife got the really bad kind of multiple sclerosis and he wondered to himself (he used to do stuff like this) if he had to choose between the woman he loved and the music he loved, which would it be? Then he realized that the music was inside of him and would always be with him, so he’d never have to choose. My second favorite is WAER and jazz, followed by on-line Pandora One where my stations are Bette Midler, Paul Simon, Frank Sinatra, John Denver, Kenny G, John Philip Sousa, Broadway, and How Great Thou Art, but 60s Folk Music is my favorite. That was the time that defined me.
I’ll tell you one of the worst times in a person’s life: when you get a whole lot sicker and the level of services doesn’t rise to meet the need. I went through this ten years ago when I stopped taking “medications”—drugs by any name—and it was really awful. And has been awful this last month or so since the Visiting Nurse Association terminated me unlawfully. (The NYS Dept. of Health has been screwing around “investigating” this for weeks.) But this morning a second aide arrived to work 8:00 a.m. to 10:00 a.m. every day, backing up Amelia, who is a very young woman whose workday starts somewhere between 9:30 a.m. and 2:30 p.m.
I don’t exactly know why the additional aide makes me feel so much better but she does. I just couldn’t cope, you know? It was either brush my teeth or make coffee because I don’t have the energy to do both. (Coffee, of course, takes precedence.) Today, with the additional aide, things got done without wearing me out. By ten o’clock the dishes were washed, the bed made, breakfast gotten, and so forth. My minimal needs will be met. That makes me feel safe, which I haven’t felt for a long time. But safe from what?