"To let understanding stop at what cannot be understood is a high attainment. Those who cannot do it will be destroyed on the lathe of heaven."
- Chuang Tsu, via Ursula K LeGuin
I've spent a massive chunk of the mental resources across my lifetime, studying and pondering the nature of consciousness from every possible angle. This might have something to do with flipping out, when my sister dismissed my efforts to steer my father's treatment, by asking how many medical degrees I have. She'd never even heard of antipsychotics. She had no idea why my father wouldn't want to ever take one, under any circumstances. I do.
Doesn't matter now. I'm assuming he's still alive, but haven't heard from my sister since being told that my views don't matter because I'm a drop out, and that I had to leave. To be fair, she probably didn't mean leave Hawaii, just for a while. Or maybe it was just a reflexive response to a man being violent: I dropped the phone I was holding to stop myself from throwing it. I walked away from her and hit a stone pillar. My hand is still all bruised and swollen today. I threw a chair.. I pulled the throw, as I realized I was aiming for another neighbor's rooftop solar panel array.. but it still clipped a window. I was way past my breaking point, and she just keeps turning every goddamn thing into a pissing contest argument.
I don't know how he's still alive. He was in awful shape when I left. In the hospital, he'd be in the ICU, but on hospice, he's no longer allowed to go to the hospital. It occurs to me that I should be clarifying all of this, because it's both normal and most people have no idea. It's unbelievable and yet, for the most part, it makes sense. We know how this goes, and fighting it just makes it worse.
Assuming they're not wrong. I choke on that now and then. What if he could be saved and we're just letting him die? Chances are, his case was typical. That's what chances are, and that's where medical science falls short. Human judgment can be needed to catch the exceptions. What if his case wasn't typical? I can go down another rabbit hole here, but no. His situation was extremely dire.. last I saw him. I fear his suffering was greatly amplified by his inability to accept it. I wanted to address that, after my birthday, before I left, but it was already getting very hard to communicate with him about anything.
What really got to me was what they call terminal restlessness. There should be videos on this, but we'd see it as a gross violation of privacy. To see someone in such a state, somewhere between animalistic and childlike, while suffering unbearable distress, writhing around, moaning, shrieking, or wailing. How shameful, right? Why are we not supposed to talk about this? It was incredibly disturbing to witness.
This is a very serious condition. It should be far better documented, such that we all know about it. We should also strive a lot harder to understand it. Not so that anything can be done to save a person's life, but to better protect their last moments of life. They worry about "dignity" and "agitation," but these are people going through the nine circles of hell. I watched my father disintegrate before my eyes.
Throwing a mental straightjacket on them so that they're more manageable is not a solution. It's just burying the problem, so that we don't have to see it. Dad's at peace, because he's just laying there, drugged out of his mind? Neuroleptics don't help a person feel better. They just crush a person's will to express anything. Throw in morphine and ativan on top of the delirium they're already struggling with, and you're basically just euthanizing the person, but dishonestly, to protect loved ones from reality, to ensure that it will be just as bad when it's their turn.
What was especially awful to see, was this decoherence. On the first day, he was speaking gibberish. The second, just mumbling. Mostly stopped speaking at all. Stopped making eye contact or acknowledging the presence or speech of others. Even in moments of calm, just staring blankly. Conscious enough to look in my direction if I sat next to him, but without any indication that he recognized that I was a person, let alone who I was. Conscious enough to keep trying to get up and go somewhere. Anywhere.. but he could barely stand, let alone walk. His pupils were tiny, even in the dark. Each day was worse than the last.
It feels important to me. Our last days of life. Our last moments. Not the moments of the people around us, who get to pick themselves up and go on. I suppose it's almost religious. Maybe it's because I know what happens when we die. I think it's critical to face that, come to terms with it, and try like hell not to die. For those that do though, we should be doing everything we can to make it a better process. Whatever that means to the person who's actively dying.
We can't make a decision like that when we can't face that we're dying, or even what dying means. Eventually, we face the truth, regardless. We should be better prepared. We shouldn't have to face it alone.