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infinitelystrangemachinex · 1 month ago

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content warning for illness, aging, near-death, and morbidity

my grandpa had a stroke a year and a month ago, survived, and it's been chaos ever since. he can't actively be the family patriarch anymore, my grandma was diagnosed with alzheimer's a few months ago and can't actively be the family matriarch anymore, and their kids including my mom are sort of taking things in stride but not really. my grandparents more or less raised my brother and i, but we've mostly stayed out of the way unless our help is needed somewhere

in short, i've made the mistake of finally reading a few journal articles, and the survival curve for both of them is worse than i thought, and some family members i've been really pissed at for a year were probably right maybe

i've had a hard time understanding why "the kids" (this is what i call my mom, her brother, and her sister) assume things about my grandparents' behavior and cognitive abilities that just aren't true. basically they've assumed the worst of my grandparents for several years even though they were functional and, while i was living with them, still wanted to be caretakers of their neighbors, me, my brother, my mom, and others, and were able to do so while still taking care of themselves. to give some color to this, my aunt privately talks to me like she's surprised that they, especially my grandma, can still remember her. which if she'd known even a little about my grandparents and their day-to-day lives for the last decade, is something it would have never even occurred to her to say. they've been poisoned pretty bad by fox news and the like, but they were far, far from any stereotypes of old people fading away or whatever

basically i've had dozens of existential crises while thinking about this and the fact that i would never want my loved ones to assume that i've gone senile or don't have abilities or opinions of my own just because i'm old

so it's sucked enormously to watch my grandparents actually for real this time decline since their illnesses. like the shitty things my uncle and aunt assumed about my grandparents just got validated because they finally became ill and frail for the first time in their mid-80s

where i got really, really mad in the last year is how my uncle and my aunt both - despite their dedication to helping my grandpa recover and my grandma to get through her day-to-day - clearly believe that both my grandparents have maybe a couple years to live

the first time i got angry was the day of the stroke, in the hospital, but i was crying too hard and too deep in grief to express anything else. my grandpa is a good man but he's a bit of a coward, and one thing he left out of his will was whether or not he'd want to be resuscitated. a year before the stroke, he told me he couldn't bear to write down a decision - he'd figure it out later. the result is that the hospital called for a priest and simultaneously asked the family to make the decision. although i know what i said about cognitive abilities and such already, my grandma had admittedly been struggling with executive function and other things for a few years at this point, and could never decide anything for herself, not what food she wanted to eat day to day, and not whether she thought her husband should be resuscitated

my mom is the eldest but it is very obvious that my aunt and uncle think little of her because she's softhearted and often acts immature. she said immediately that my grandpa should be resuscitated, but my aunt and uncle put their heads together and started talking about survival rates and quality of life. practical, but to me, utterly absurd in the face of what they were actually deciding

my grandpa and i were close when i was young and even as an adult, he still told me a lot of things that he probably should have reserved for his kids. among them, how scared he was of death. he told me multiple times that he would want to be saved medically no matter the circumstances, as long as he got to live. while the family froze up in indecision at the hospital, i told my mom and brother through tears, knowing it wouldn't actually help with the decision because my input did not matter. but it was the truth. i couldn't prove it

but i was furious at what i felt was an overly clinical way of coming to the decision. even the thought of letting him die - when he had told me how badly he wanted to live - was barbaric to me

he'd suffered a hemorrhagic stroke (stroke with severe brain bleed), which is generally more severe and has worse outcomes than an ischemic stroke. he'd lost all feeling and control of the left side of his body, lost the ability to speak, and passed out on the bathroom floor

but in the hospital, he was semi-conscious, but only barely aware. any stroke will come with a headache, and my grandpa has had migraines his whole life. but there's no words to describe how bad the headache is with a brain bleed. he had a 103+ degree fever, he was moaning, and he was writhing uncontrollably in the hospital bed. sometimes he blindly grabbed my mom's hand and pressed it to his face because her skin felt cooler than his. the situation was so delicate, i think he was barely allowed an adult dose of tylenol. we were allowed to put ice packs on his forehead and wrists, but no more, because they were afraid a shock of cold could trigger a heart attack

i've been in the room with a couple of older people quietly passing away, but this is the closest i've ever been to watching someone die violently. he was dying right in front of me, and he was in an inhumane amount of pain. the only way to save him was incredibly risky brain surgery. he was more likely to either die or enter a vegetative state after the surgery than he was to ever be fully conscious again. my grandma eventually said, after some prodding from my uncle, that grandpa would want to be revived if he had a chance of living. he had the surgery and woke up 24 hours later, opened his eyes 2 weeks after that, and left the hospital severely disabled but in a wheelchair 3 months later

i've been shaken ever since by how close he came to not having a choice. and i've just gotten angrier with my aunt and uncle after seeing how they are treating the situation as if neither of my grandparents will live another 2 years. there are plenty of people who live decades after a stroke

what i had not done - until now - was read a variety of papers about longevity after hemorrhagic stroke analyzed across the two most driving factors - the specific age of the patient (I'd previously only read about outcomes in 70 year olds), and the mRS (modified Rankin Score), which is an ordinal measure of 0-5 labeling how severe disability is after a stroke

based on his age the day of the stroke, without disability, my grandpa would have had a coin-flip chance of living 6 more years. at his level of disability, he has a coin-flip chance of living 2 years after the stroke. and it's already been a year - a year of managing to go from level 5 mRS to level 4 with therapy, when the hope had been at least level 3

obviously he could live longer and probably will with how many people are dedicated to caring for him at this point. many nurses and doctors have remarked on how involved the family is in his recovery. but i am also cursed with the knowledge of how confidence intervals work and with knowing what his heart problems are, how rarely he exercised, etc.

i'm mad that my uncle and aunt were actually probably right

i've left my mom out of this because her optimism, while impractical, i think has been far more useful to the situation because she talks and acts like everyone is gonna keep on living forever, and so she looks for longer-term solutions to everything, prioritizes my grandparents' comfort, and is better at asking for help and employing "many hands make light work" with my aunt especially, while my uncle is being non-communicative, looks for short-term solutions, and tries to do everything himself and is making himself miserable in the process

but yeah, my grandpa probably isn't going to live very long. i did the same thing with my grandma and her alzheimer's and she's probably got a coin-flip chance of living 6 more years. she will get there as long as we start managing her diet more and as long as low blood pressure doesn't trigger anything in her

also there is not much research about people older than 80 with this stuff, which is crazy to me, but i guess you get diminishing returns with that research when the number-one most driving factor for both alzheimer's and stroke morbidity is the age of the patient. there is one group of 3 researchers who made a tool that lets you run a survival model for stroke. otherwise, you just have to read several papers from the last decade and make broad guesses at how long the person you're thinking of might live

it's hard to feel like anything matters when i know my grandparents are just sitting at home and will die relatively soon, when i know they were so much more able and lively just a year and a half ago (even if everyone else in the family already thought they were on their way out). but i have so many pressing responsibilities at work that it at least drags me along day to day. but i'm not the kind of person anymore who throws themselves at a task when things get tough. that was me a couple years ago, but i don't have any of that in me now. no one has to depend on me, so it's just me vs. me. in the last few months i've gone from half-assing my way through everything to now probably quarter-assing it. somehow i need to get the time in with my grandparents that i need, and try to get my feet under me again

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infinitelystrangemachinex · 8 months ago

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elden ring is actually genius because it's one of the more recent works of fantasy i can think of that actively criticizes the very concept of a "hard" magic system that can explain everything versus a "soft" one that's fluid and explains nothing. a very GRRM-ish idea btw

the ruling world order is the Golden Order which is overseen by the Greater Will, the emissaries of which are (parts of) hands, old and withered, hands that direct the world and try to puppet the empyreans and make things work a certain way. turtle pope says that under the Golden Order, "all things can be conjoined." take any one thing in the world of elden ring and it can fit into the Golden Order

except again and again we find that the Golden Order is misguided, the Golden Order tries to pick and choose its rules and people suffer and things fall apart as a result, the Golden Order isn't even the original order that governed this world. there are Outer Gods we can't see meddling in the land that the Golden Order lore can't explain. you can try and try to hunt and mine all the lore you can, but there will always be things that don't fit into the Golden Order, things that can't be attributed to any Outer God we know of either. you find out that the Golden Order kicked out anyone it didn't like or didn't think "fit" but that doesn't mean they don't exist or don't matter, and they wind up having their own culture and their own "orders" that have all changed over the course of history. there has always been rules to the world but they can and have changed, shaped by politics and powerful individuals and collective movements. that's what keeps the rich tapestry of elden ring's fantasy world changing and evolving, and the rigid hand of some author is an intrusion upon that complex, diverse reality. we and the characters will never know it all, and nor should we

#ISMtext #elden ring #elden ring doesn't have to be a novel and it does not try to be and so that lets it express worldbuilding differently but like. yeah #we will never have the luxury of knowing the full reality of existence or the gods and i like it when fantasy contends with that as well #there isn't even one explainable truth to how DEATH works in elden ring like come on

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