to die is gain

My father can finally rest. Goodbye, Dad.

lathe of heaven

"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.

almost home

I'm in Detroit now. A pretty decent airport. Much nicer than LAX, which to my surprise, was probably the worst airport I've ever seen. It reminded me more of Port Authority than an airport. 

I wonder how my father is doing. I wonder if he'll even survive the length of my trip. While I was there, I constantly wondered in recent days, if he could understand anything or if he was even thinking anything at all. I think he was already gone..but it's impossible to be sure.

Over the past month, I watched the man I've been closer to than anyone else in my life wither into a skeletal embodiment of suffering before my eyes. All that seemed to be left of him was pain and confusion. It's been the most traumatic experience of my entire life. Tough for him too, I know.

When I threw the chair that broke a neighbor's window, I realized I had to call it. I didn't say goodbye to anyone. I hate goodbyes. I told my father I would be there for him. I told him that I would always be there for him, and then I left.

I want to go home, tend my garden and escape into my routines, but I know it won't be that easy.

fuck cancer

On the fourth day of active dying, my father was still hanging on, but I lost it. Got in a big fight with my sister and stormed out. Now I've got a few more hours to wait, at the airport.

I feel sick about it. The last month has been beautiful, but I decided to take a dump on the whole thing and go home. 

terminal restlessness

My father has always been a trooper of sorts. Life has never been good to him. He would always just take it. He would always keep going. He was never able to relax. With his rational mind already gone, he's all impulse now. He keeps trying so hard not to let the cancer keep him down. He doesn't relax, he barely sleeps. As his body fails him, dragging him down, he fights so hard to keep sitting back up, standing back up, finding some excuse to keep walking around. Even as the world grows dark and muted, as he's getting weaker, his muscles atrophied, his organs failing, he keeps trying.

In a fleeting moment of relative lucidity, he told me that he feels like he keeps waking from dreams, only to find himself in other dreams. Now, he's finally settled down. He's sleeping, but far from peacefully. He's dying and all I can do is sit here with him.

It's surreal. My sister and I have been discussing whether this is something other people have any knowledge of or experience with. I had no idea death was often like this. Neither did she. There are a few differences in our approach. We've been sedating him minimally. We're able to do this, only because we watch him 24/7. It would be impossible otherwise, so what most people see is probably different. If they're even around in the the very last days to see it.

Other people are more familiar with someone in this sort of situation, sleeping until they die, from what I can tell, and that's only if they're dying of a condition that results in this shutdown state it goes into. It occurs particularly frequently in cancer patients, I've read.

It's brutal and horrifying. Watching someone die, day after day, stress filled night after night, while they're tumbling through the worst trip of their lives. It occurred to me that it does seem to resemble tripping on hallucinogens in some ways, and I wondered if it could be similarly guided into being more pleasant. He's calmer in the fresh air outside. I play his favorite music for him. It seems to help.

long day

My father's mind is gone. He can no longer bathe, dress, or use the bathroom himself. He no longer responds to even basic questions about whether he's comfortable or in pain. Sometimes he looks panicked and I put my arm around him.. I tell him, I'm right here, dad. He chuckles and seems relieved. 

Hospice is often accused of accelerating decline, but the truth seems complicated and ambiguous. They say these are the signs someone is dying, and that their morphine use often coincides with these symptoms. It's easy to get cause and effect backwards. I'm not convinced, but he's been incoherent and on another planet all day. He speaks in fragments of thoughts and memories without context or specifics. 

It's as if different parts of his brain are just firing, increasingly incoherent of one another. It was a large dose of extended release morphine. Maybe he'll start making more sense when it leaves his system. Or hospice is right, and this is what dying looks like. I've never seen anything like it.

Death is hard enough to come to terms with when we've got all our wits about us. I find it horrifying that in the end, we're robbed of even that. A defense some of us have spent our lives building up. My father was never really big on that though. I don't know what he believes or doesn't. I'm not sure he's ever thought much of it one way or another.

I've spent all day with him, muttering incoherently. I don't know if it's because of the 30mg morphine ER, his mind is shutting down, or what. This morning, I was afraid he might only have weeks. Now, days. Maybe just hours.

departure

Trying to get my father to drink has not gone well. Given that he barely eats, dehydration is pretty serious. This is my explanation for why he's taken a sharp turn for the worse this past week. They're just giving him morphine now. Took him off of the oxycodone entirely. I'm afraid that simply signing onto hospice has meant agreeing to indiscriminately hastening his decline. 

The decision seems very routine, made entirely by his nurse, that he should now be bedridden and delirious for the rest of his life. His abdominal pain was getting worse, as were dizzy spells, and severe constipaion and irritability. But I can't get him to drink anything, and hospice just treats the symptoms. He signs away his right to agemcy if he's too delirious to make his own decisions. He is the one refusing to drink anything, but the delirium itself is from all the morphine.

I don't know what we're supposed to do. The nurse is acting as if he has weeks to live. I'm still scheduled to go home tomorrow. I'm thinking I'll try to come back in a few weeks, but now I'm not even sure he has that. On the other hand, maybe he has months. If nothing else, I desparetley need a break; I need my own apartment to get myself back together in for a while. I'll try to come back, if he has enough time for it. My sister may need the help more desperately than ever. Hospice people come and go occassionally, but she's mostly on her own, and my father can't be left home alone.

Not sure I'll even get to say good bye tomorrow. I'll try, but he might not remember. He'll just be upset later.