My father died after just a few weeks in the old folks’ home. I can’t forget watching him walk around the place saying, “I don’t remember a trial. Was there a trial or just this sentence?”
My mother took much longer. Toward the end, her vital signs were strong, but she was blind, incontinent, crippled and demented. She didn’t recognize me or my sister. She couldn’t walk or feed herself and needed 24-hour, one-to-one care. She couldn’t remember not to try to get out of bed. Even with a caregiver there all the time, she somehow managed to sneak out three times and fall and break bones.
Walking out of the place one afternoon, I got into a conversation with a woman who had just visited her mother. She asked how my mother was doing. I was supposed to say: “She’s doing pretty well under the circumstances.” Instead, I said, “Personally, I’d rather be dead.”
I think there are plenty of things worse than death. And I think it’s fair to propose that I won’t make decisions for you if you don’t make them for me.
The woman nearly fell into my arms. At last neither of us had to keep up the charade. The whole thing was a ghastly nightmare, and we both knew it. I told her my mother had been in hospice but “graduated” back into the general population. My new friend said, “They thrive in hospice!”
Some people think old folks’ homes are lovely. At the good ones you can make craft projects or play bingo. They bring kids in from the local junior high school to perform dance recitals. You can watch movies and participate in discussion groups led by enthusiastic women who AR-TI-CU-LATE carefully and speak s-l-o-w-l-y and LOUDLY for the benefit of the hearing impaired. Fine. If that appeals to you, you are welcome to move right in. Personally, I would rather be dead.
I know, I know. I am hearing impaired. I wear hearing aids. Don’t tell me about respect for people with disabilities. Listen to what I’m saying.
I’m a baby boomer, a member of the great demographic bulge, the pig in the python. As a group, we are burying our parents, just as every generation has done since the beginning of time. But first, for many of us, there is this additional ordeal as they deteriorate. We learn how hard it can be to get off the bus even when you’re well past your stop. We have a recurring conversation whenever two or more of us are in the same room for more than an hour.
Someone starts by describing a recent nightmare trip to the old folks’ home. I say, “I’d rather be dead.” Someone else proclaims, “Now you think you’d rather be dead, but when you get old and sick enough that you need to move into one of those places, you’ll sing a different tune.”
I bring up Christopher Hitchens. When the writer, critic and famous atheist was diagnosed with terminal cancer, Anderson Cooper asked him whether he might want to consider hedging his spiritual bets.
Hitchens said: “If that comes, it will be when I am very ill, when I am half demented, either by drugs or by pain, and I won’t have control over what I say. I mention this in case you ever hear a rumor later on, because these things happen and the faithful love to spread these rumors. Well, I can’t say that the entity that by then wouldn’t be me wouldn’t do such a pathetic thing. But I can tell you that not when I’m lucid, no. I can be quite sure of that.”
I’m with Hitchens. If at some future time the man who lives in my body wants to move into an old folks’ home and play bingo, you can be confident that person is no longer me. You do not need to pay any attention to him.
At this point I am told I have no right to make decisions for that person. He is entitled to make decisions for himself, and he may well disagree with the views I hold today just as I disagree with some of the views I held when I was a younger man.
It’s true that opinions change. If you ask able-bodied people how they would feel if they lost both their legs, many say they would rather be dead. If you ask people who lost both their legs, after a while they say it’s just fine. In fact, many say losing their legs was a net gain since it enabled them to get a better perspective on what’s really important or find out who their real friends are.
But I’m quite sure about this one. I never want to go to one of those places. I would rather be dead. I’m adamant.
I’m not interested in telling other people what to do. If you believe that any sort of life is sacred, that every moment is precious no matter what, fine. I disagree. I think there are plenty of things worse than death. And I think it’s fair to propose that I won’t make decisions for you if you don’t make them for me.
The problem is, short of committing suicide later this afternoon, I don’t know how to assure that my wishes will be honored. I filled out all the forms my attorney gave me when I wrote my will. I discussed my views with my wife and family, but there doesn’t appear to be a mechanism for people like me.
I’m afraid I’ll be sentenced to infantilization and humiliation, like my father, or to years of fearful confusion, like my mother — without a trial.
Barry Goldman is an arbitrator and mediator in Michigan. He is the author of “The Science of Settlement.”
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