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Alright, so it's clearly established I'm having a bad week. I may as well explain, even if it's just so I have to type it all out and get my head around everything. So HBOT is having an effect, definitely, as within the few weeks we've been doing it she's:
But what is she not doing?
So what does it all mean? Who knows, and the neuro's I have talked to are like "I mean, seems like she's coming back online" and I don't really hold super high hopes that our new neuro that we have the appointment for will be all that useful outside of being able to (hopefully) schedule an fMRI so we can visualize the (hopeful) month over month improvements in metabolism (or at least see the lack of improvement that helps make any decisions for care / withdrawal easier or more clear) And that's just that side of it. I'm up every two hours 24/7 to turn her and have too much in assets / income for any home care assistance through any and all local / government organizations that I've applied to. What does "turning her" look like you ask? Aha, allow me to really give you some insight into what caregiving means.
Thankfully my dad has gotten pretty good at mixing / prepping her meds and cooking / blending her food for each day. Family helps, but really it's mostly me caring for her 24/7. So the reason I get a bit cranky about "find some time for you" and "make sure you think about her and the decision you have to make!" is because effffffffff yyyyoooooouuuuu, I'm living this unsustainable nightmare. I get it. That's why I'm putting everything I have into helping her get to a place where she doesn't need it. One way or another this isn't going to be the rest of her life, because it can't be the rest of mine or any of the aging parents who fantasize about somehow keeping this aloft as is forever. Christ she'd be in my ear about giving up as is, regardless whether or not I was able to prove that she's getting better and would have an OK life at the end of it. All the while, I have nonsense things like in the first two bullet lists above, contradicting and changing, and never giving any clear picture of what's really there. In my experience, there's no doctors or neuros who've really dealt with this on a level past either encouraging families to give up on (or "be realistic" about) the current situation . . . or they carefully avoid prognostication of any kind. Treatment is to "wait and see" or (if you're lucky) maybe give anti-epileptics, amantadine or memantine. So I just kinda keep going, waiting for a plateau or breakthrough, and keeping the closest to the edge of research that I can in my spare time. Weirdly I'm generally pretty OK, tired but OK. Moreso knowing my daughter will be with my sister and getting the attention she needs for the rest of the school year--kid's excited and thinks it was her own idea to go so bullet dodged there. Figure it'll come crashing down in a month or two when I have to go back to San Antonio--all the case studies I can find point to the cognative breakthroughs happening in 60-190 HBOT treatments, so I probably won't even be here if / when it happens. Seriously, it might work, 6 months is late in but still in standard brain-healing-itself timeframes even without help or therapy, and HBOT does have a good record of nutty results with brain injuryies and that's without all the other stuff I have involved in her recovery. Here's some HBOT videos -- There aren't a ton out there, for a variety of reasons. The least of which is the expense, most families can simply not afford to do this as an out-of-pocket treatment.
Why isn't this a thing we do? I had two doctors refuse to prescribe it off label because "It's too dangerous" and "There's no support for it's efficacy beyond rhetoric" so . . . man oh man. Deffo setting up some therapy for myself when I get back to San Antonio; it'll probably be much more difficult to stay sane when I am home after work and have time to think, with no ability to help my wife or hug my kid from several states away night after night. Arrhythmia posted:also OP i'd like to tell you that i, too, am made very agitated by your thread title. Edit: Mods plz change title to "hey beautiful, I noticed that you're ischemic" I . . . I don't want to hurt anyone anymore FAN OF NICKELBACK fucked around with this message at 18:21 on Sep 6, 2016 |
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Sep 6, 2016 17:45
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Man, what you're going through makes caring for a newborn baby a breeze in comparison. I suggest seeking help through a church because they should help you (should... not that they necessarily will) regardless of your financial status. You are handling this all well considering, but constant sleep deprivation is a form of torture, or torture-lite anyway. I think they've used it at Guantanamo.
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Sep 6, 2016 18:31
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FAN OF NICKELBACK posted:Edit: Mods plz change title to "hey beautiful, I noticed that you're ischemic"
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Sep 6, 2016 19:19
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There we go. You've been granted the peace and serenity of a thread titled with care, one that avoids awkward malapropisms. One that you deserve. You did it. Your voice mattered.
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Sep 6, 2016 20:18
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I'm glad you finally saw reason and let go of your old thread title. It's what the thread would have wanted.
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Sep 6, 2016 20:26
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FAN OF NICKELBACK posted:There we go. You've been granted the peace and serenity of a thread titled with care, one that avoids awkward malapropisms. One that you deserve. Anoxic that you changed your thread title
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Sep 6, 2016 20:31
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Mega64 posted:I'm glad you finally saw reason and let go of your old thread title. It's what the thread would have wanted. Everyone thinks they know what is best but I just taught them all that if they just put everything into improving something they might make a difference against all odds *drops mic* Boom poo poo *picks up mic* Boom *drops mic*
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Sep 6, 2016 21:14
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This is a crazy thought. Have you heard of the app nextdoor? Could you use it, local churches, or a related service to find people in the area willing to help out with errands, etc. on the cheap?
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Sep 6, 2016 23:25
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thank you, OP. i can sleep well at night now. good luck.
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Sep 7, 2016 01:53
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RandomPauI posted:This is a crazy thought. Have you heard of the app nextdoor? Could you use it, local churches, or a related service to find people in the area willing to help out with errands, etc. on the cheap? Also... how about modifying the gofundme for the purpose of funding a part-time caregiver, so you can at least sleep? This is a perfectly legitimate reason to ask for help.
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Sep 7, 2016 02:54
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RandomPauI posted:Have you heard of the app nextdoor? 
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Sep 7, 2016 03:36
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it's 12:37am, and i'm still awake. blows. i can't sleep if she doesn't (only incontinent while awake, cannot figure that one out but it's either a good sign or a meaningless one so w/e) and i am 4 deep in a sixer of oculto and bored as all heck. oculto is a lot like what zima sought out to be imo fyi. that's either impressive or really depressing depending on perspective. anyway, so i figured i'd test out this whole laughing thing. i still get weird about whether or not it's pseudobulbar affect, which is the least unlikely thing even assuming it's only new as a sign of healing etc. about an hour ago i decided hey ok let's try a funny stand up guy she likes, so i put on louis ck. before you reply, if you're gonna get all lovely about him just remember that it's the internet and . . . imma look out for you . . . don't get all youtube comments about it. i promise you that your opinion of a guy who's already over his hump of popularity is going to be sad to experience. anyway she laughs at a joke, and then gets started laughing a ton. i turn it off and she stops, like deadpan stops. then i figured w/e netflix has a ton of stand up, and i put some on. nothing. click after click, just nothing. finally i get to a thing and she loses it. she loses it to bo burnham. just loses it. keeps losing it until his entire (netflix) special is over. i really hope i'm still doing the right thing. i guess Bo'll prolly find a groove or something eventually, maybe i shouldn't judge her progress on her taste, but i kinda do. edi: 1:45 and she is asleep so i get to do that too. my mom asked me if i'd told my daughter's teacher that she's transferring schools and i looked at her like she had two heads. like i'm awake to take her to school. the aristocrats. FAN OF NICKELBACK fucked around with this message at 22:31 on Sep 7, 2016 |
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Sep 7, 2016 09:01
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If she's able to laugh appropriately at a stand-up routine, well, that requires a certain level of language comprehension and thought to understand. It seems indicative that she has more going on inside her mind than she is able to convey due to her physical limitations. Although there is the possibility she was just laughing along with the audience and didn't really understand the jokes. This might be tested by putting on something funny that doesn't have an audience or laugh track, I suppose.
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Sep 7, 2016 10:12
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Chairman Mao posted:no dont It was a cool joke for smart people, and made me feel good every time I read it. No longer. Keep on truckin', OP.
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Sep 7, 2016 10:41
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green chicken feet posted:If she's able to laugh appropriately at a stand-up routine, well, that requires a certain level of language comprehension and thought to understand. It seems indicative that she has more going on inside her mind than she is able to convey due to her physical limitations.
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Sep 7, 2016 23:44
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a hole-y ghost posted:Unless it was Jeff Dunham If she doesn't laugh at Jeff Dunham, then that would be a positive sign.
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Sep 8, 2016 03:57
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Get well soon, corpsewife.
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Sep 8, 2016 07:24
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If she's laughing at Bo Burnham, there may be hope after all. I choose to believe she feels strongly in-tune with the solipsism.
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Sep 9, 2016 04:26
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have some you time dammit. dammit!
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Sep 10, 2016 06:50
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Have some "me" time. Some time for me, personally.
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Sep 10, 2016 06:52
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we can rebuild her
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Sep 10, 2016 06:54
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wife vegetable so what
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Sep 10, 2016 06:59
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Look, OP, I don't disagree with you that grief is a natural emotion, but there's a huge goddamn gulf between a standard grief experience and what you're doing to yourself. Therapy doesn't mean considering your emotions to be "wrong" or unnatural, just acknowledging that your mental situation is unstable or incompatible with living a healthy live, and you've pretty obviously crossed that threshold (no disrespect meant, just, well, look at what you're saying here). Grief therapy can help give you a toolbox to get yourself functional and balanced, which is ultimately for your wife's benefit, too, given your role as her caretaker. If you keep going like this, you will burn out or worse, and she will suffer for it.
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Sep 10, 2016 08:21
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This isn't grief. Goddamned it. That, I think is the assumption that annoys me most. This is desperation. Not because I need her, but because I know what it means to her if I fail to very-nearly literally give her the possibility to accomplish the impossible.
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Sep 10, 2016 08:32
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Trust me, and very dearly do trust me, it does not mean what you think it means to her if I fail. Re-read the first few pages of this thread. It's too late to go back, I did a dumb thing and bet a year with a family because I was arrogant enough to think she was vegetative and would stay that way. I'm such a goddamned idiot.
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Sep 10, 2016 08:33
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Unfortunately I'm of the character that couldn't just leave well enough alone, and if I was going to give her a year I was going to do it because she had a chance. Like I promised her the situation in that scenario would be. So I gave her everything I had, and it has helped. Helped is a funny word. So now it's all engines blazing.
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Sep 10, 2016 08:35
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FAN OF NICKELBACK posted:This isn't grief. You're splitting hairs here. Ultimately, it really doesn't matter if the emotions you're feeling are grief, desperation, or anything else -- the emotions you're feeling, while entirely natural to your terrible situation, are eating you from the inside out and are not something that you (or your wife, who has you as her sole caretaker, as far as I can tell?) can continue living with. You're using radical self-neglect as a coping mechanism, and you need to step back from that and get help, both in the mental-health-treatment sense and in the home-care-staff sense.
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Sep 10, 2016 08:36
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Antivehicular posted:You're splitting hairs here. Ultimately, it really doesn't matter if the emotions you're feeling are grief, desperation, or anything else -- the emotions you're feeling, while entirely natural to your terrible situation, are eating you from the inside out and are not something that you (or your wife, who has you as her sole caretaker, as far as I can tell?) can continue living with. You're using radical self-neglect as a coping mechanism, and you need to step back from that and get help, both in the mental-health-treatment sense and in the home-care-staff sense. Splitting hairs. I literally said I expected such a difference that I accepted she might literally not know me and reject me. That I'd lose her either way. It isn't grief at all if loss isn't part of the process. Everything that makes someone sad isn't the same.
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Sep 10, 2016 08:41
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ugh ok look i'm only rapid posting because roki b has me all in arms about retconning. i have no idea why i care about that, but i do. i've never been anything but as honest as i can be, and i've never tried to shape anything into what it's not. last night she started doing weird poo poo. slow, methodical weird poo poo. since then, if i ask her to talk she coughs at me or lets out a noise. she literally lifted and lowered her arm a foot off the bed only when i asked her to try to waive. she also laughs more than she cries, and never in a vaccuum. i ain't crazy or in danger, but this is a poo poo thing and i'm super happy my daughter is headed to my sisters until school ends, and that she's only gonna see me outta this situation and on her word.
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Sep 10, 2016 08:48
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So, OP, you have decided that you will continue this until a year has passed. When a year is up, what will you do? What are your criteria for success? When a year is up, are you certain you will not torture yourself over every last perceived smile or subjective sign of progress?
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Sep 10, 2016 08:53
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lizard_phunk posted:So, OP, you have decided that you will continue this until a year has passed. decide, reality, no.
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Sep 10, 2016 08:54
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the only think i'm sure of is that medical professionals are assholes and bad at their jobs the second they aren't able to follow a set path. ain't saying anyone is wrong. I'm saying they are assholes and bad at their jobs the second they aren't ale to follow a set path. that sorta does put them on the level of a frontline tech support rep tho.
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Sep 10, 2016 08:56
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FAN OF NICKELBACK posted:the only think i'm sure of is that medical professionals are assholes and bad at their jobs the second they aren't able to follow a set path. ain't saying anyone is wrong. I'm saying they are assholes and bad at their jobs the second they aren't ale to follow a set path. that sorta does put them on the level of a frontline tech support rep tho. You are projecting pretty heavily here, dude.
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Sep 10, 2016 09:01
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i won't post here again for a month, whether she dies or leaps up and hugs me in between. go ahead and spell out the facts outlining your stupid post.
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Sep 10, 2016 09:03
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FAN OF NICKELBACK posted:decide, reality, no. All of these are highly subject to your mental state. Desperation is a big component of grief.
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Sep 10, 2016 09:06
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FAN OF NICKELBACK posted:the only think i'm sure of is that medical professionals are assholes and bad at their jobs the second they aren't able to follow a set path. ain't saying anyone is wrong. I'm saying they are assholes and bad at their jobs the second they aren't ale to follow a set path. that sorta does put them on the level of a frontline tech support rep tho. lmao what the gently caress is this even
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Sep 10, 2016 09:18
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Recoome posted:lmao what the gently caress is this even Without turning this into a story about my own life - this has been my observation as well. Watch a medical professional try to deal with something that isn't by the books. There doesn't seem to be problem solving going on, just trying to follow a flow chart of common issues, like tech support would do. Edit: Maybe if you're lucky you find a doctor who cares AND has the time to work with you on solving the problem, but I don't think this happens much. It might help to be a billionaire or someone "important". Most doctors have too many other patients to see to spend more than 15 minutes making perfunctory observations. green chicken feet fucked around with this message at 11:47 on Sep 10, 2016 |
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Sep 10, 2016 11:35
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green chicken feet posted:Without turning this into a story about my own life - this has been my observation as well. Watch a medical professional try to deal with something that isn't by the books. There doesn't seem to be problem solving going on, just trying to follow a flow chart of common issues, like tech support would do. It's because medicine is performed by professionals according to established standards. These are based on research combined with best practice and also cost effectiveness. This means that when it is extremely unlikely (by empirical evidence) that an intervention will work AND this costly intervention would eat up the same money needed to perform expensive highly effective interventions (like curing leukemia in children), it will not be performed. If you have a shitload of money, you can of course buy the intervention anyway, but this does not affect the chances of it actually working (which is the reason the professionals did not want to do it in the first place).
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Sep 10, 2016 11:57
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The basis of established medical treatment is based on mountains of objective research and years of clinical training. 99.9% of cases are pretty cut and dry diagnosis and following a "flowchart" is how the process works. Anything outside the normal path runs into dangerous waters of experimentation with a human life. Tack on outrageous malpractice suits if and sometimes not even the doctor tries something "radical" and you're going to get a doctor who says no to anything outside textbook. Like, OP. What do you want a doctor to do? They already diagnosed your wife. The life threatening situation is over and all that is left is recovery and at this point you are charting your own course with research papers and consults. I wish the best for you but don't blame the park ranger when you go off the trail. You posts have gotten more erratic recently. It might be time to stop, reevaluate your situation and look into getting assistance for yourself and your wife. No one says you have to do it alone. Take a break and get perspective.
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Sep 10, 2016 12:07
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I could do medicine, if I wanted to. All I need is wikipedia anyway
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Sep 10, 2016 12:08
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