Abbie, I’ve been mulling how to respond to this (if at all). I’ll start with some personal history points:
- Father-in-law died six years ago after a long illness.
- Mother-in-law died in April 2016 after a painful fight with cancer.
- Mother still alive, has Alzheimer’s, refuses treatment or relocation.
- Father still alive, has early dementia but has not been officially diagnosed, refuses treatment, relocation, or any outside assistance with my mother.
- While I was in the Navy I attempted suicide at age 25 (1983) by slashing my wrists (attempted because I was convinced I was a danger to my ship and my shipmates; failed because slicing one’s wrists is actually a difficult process [pre-Internet, so no instructions available for download] and I got interrupted).
When the Affordable Care Act was being passed, and the mythical “death panels” were talked about, my wife and I were already of the mind that this sort of thing was not a problem for us. If someone (bureaucrat or not) decided we had reached the point that we were better off quietly expired, that was fine with us. (Actually the whole thing turned out to be a question as to whether Medicare would pay for physicians to discuss end-of-life options with elderly patients, but Deb & I were like, Yeah! Death panels! Bring ’em on, dude!)
Deb’s dad suffered from diabetes Type 2 and heart congestion, and it got to the point that life got harder and harder and there was no getting around the fact that it was only a matter of time. Months, probably. So he went under Hospice care, was taken off his medications, dumped his glucometer, and I swear the man ate more ice cream and cookies in the last year of his life than in the decade I’d known him beforehand, feeling better than he had in years. But then (oddly enough) his health caught up with him and after he went to the ER one day he became trapped in the Tyranny of the Medical Specialists. One doctor was trying to get his blood sugars under control; one tried to fix his heart; one decided his left toe needed to be amputated; and one didn’t care what was going on with the rest of Dad’s body, by damn this guy was going to heal that ulcer on Dad’s right foot. Tests and samples and more tests and an operation to remove the toe and more tests and life in the hospital and…
And Dad’s family doctor, an old-fashioned sort, asked if Dad wanted to go home. And he did. So he did. And the family doctor asked if Dad wanted to have every day centered around yet another medical exam, and Dad didn’t. So the other doctors backed off, and Dad went back under Hospice care. And a few weeks later it was over.
So Mom was a widow. Deb stopped by at least once a week (she works ten minutes away from Mom’s apartment), and they went shopping together, and did haircuts together, and at some point they went from Mom driving sometimes to Deb driving all the time. And one day Mom was having shortness of breath, and they went to see the doctor together, then went to the hospital together, and Mom was diagnosed with ovarian cancer. Metastasized into the lungs. Chemo was tried, for a few weeks, and Mom decided if that was how she needed to live she didn’t need to live anymore. Deb moved in with her in September so that Mom could stay in her apartment as long as she could; by April Mom was gone, but she only spent a couple nights out of her own bed, thanks to her daughter and other family members.
We hadn’t even settled Mom’s estate before the next thing hit the fan. My sister let us know that my mother had been diagnosed with dementia. My mother is frail, and needs help, but after the third attempt at in-home care we gave up. We were tired of flying from PA to Illinois to help set up an outside agency to come in, only to have them fired as soon as we got back on the plane. My parents say they can get along fine solo, and short of quitting our jobs or spending our retirement funds to hire helpers for them, we can’t help people who refuse to be helped. (Nope, no powers-of-attorney to make decisions and force then into assisted living; my parents always said they had it under control—hell, my mother’s last job was setting up people in their own homes under skilled care, so who better to plan this?—and by the time we found out we’d been lied to, we had no easy [or even not totally sucky] answers.) So they are living out their time in their own home, and when we call them on the phone Sunday nights, per our usual routine, they may or may not know who we are.
And then tonight we got a call that Deb’s uncle has been committed to a geriatric psych unit because he has become a danger to his wife (whom he no longer recognizes) and authorities are fearful she might be attacked as an intruder.
My point is, Deb & I understand that death can come hard and painfully, or slow and painfully; with a full recognition of what’s happening, or in a haze of confusion and increasing belligerence; with a feeling of control, or the horror of being in a roller coaster roaring through a Halloween death trap.
We want death to come under our control; but first…
We want to get out and see the things on our travel list.
We want to wake up together in the same bed as many times as humanly possible.
We want to share our experiences and our lives together for as long as we possibly can.
And when that’s no longer possible, we want to end our lives together in the same way we’ve lived them. Before we become strangers to each other. Quietly and peacefully, with dignity and no fuss (well, not much fuss).
We have no kids, so it’s just the two of us. We’re already at work putting together documentation (electronically in my case, but Deb prefers paper) to help any remaining relatives (or attorneys, as need be) settle our estate. Sure, we have at least a decade, but it’s easier to update than to throw information together. Minimum fuss.
There is an old s.f. story from back in the 80s or 90s, about a guy diagnosed early with dementia. He trains an AI to understand his wants and his ethics, and then chats with it every day. And one day the AI decides it’s time, tells the guy to swallow the unmarked pills in his desk drawer (because he can’t remember what they are any more), the guy dies quietly, and that’s it. If we get the technology far enough along in time, that’s what I’d like for us—for us to decide when to end our life, even if the us is an artifical intelligence that knows how we would decide if we were still around (and this would be different from a written medical directive how?). Because if we can’t make that sort of decision for ourselves, we aren’t really living at that point.