First of all, my dad, sisters, and I are all autistic. The whole communicating thing is hard. Some of this may be TMI, apologies in advance. Feel free to let me know if I need to edit anything out.
My sister has a severe medical condition which requires 24/7 care. I have been helping my dad with her care since it worsed about nine years ago. At first this help consisted of helping fill in all the required documents correctly (dad finds writing difficult), making sure documents we were sent were correct (I’m better at spelling/grammar), supervising her when he isn’t allowed to but is nearby (mostly showers), and minor parts of her medical care like making sure everything needed for her medical procedures are set up and suctioning so she doesn’t choke on her own snot.
When I turned 18 this increased to learning how to perform the weekly medical procedure she needs (involves changing equipment that is inside of her body so couldn’t do it beforehand), attended yearly courses on how to maintain and use her emergency medical equipment (wasn’t supposed to be doing the suctioning before this training, but a nurse had shown me how to do it earlier), supervising her whenever my dad wasn’t around (outside the house this included carrying an 8 kilo backpack of emergency medical equipment), and occasionaly monitoring her SATs machine of a night time.
So I’ve been doing a fair bit. I’ve often had days where I wanted to conviniently “forget” to do her medical procedures, and just not wanted to so much as look at her. But it’s never mattered whether I want to or not because she needs this care. This has led to some bitterness since our middle sister has refused to help out in any way shape or form, even after turning 18 (she doesn’t currently live with us, and is irrelevant to most of what’s going on).
A couple of months ago, my sister’s condition has improved to the point where she doesn’t need care 24/7, though she still needs monitored in case she relapses. I have a lot more time than I used to, and quite frankly I’ve been lazy and not used that productively.
Now on to why I actually made this topic in the first place. (Sorry it’s kinda long)
A few weeks ago we received a form in the post for switching my sister to adult disability, which I informed my dad about day of. The letter is adressed to my dad because he’s asked for the thing where he’s responible for her because she can’t do it herself, whereas normally she would be expected to. (Don’t think it’s power of attorney, something similar.) He’s quite busy nowadays so didn’t have time immediately and said he’d get to it eventually. I’ve nagged at him a few times about it because there’s no way he’s getting this form done if he’s not reminded.
This form is due tomorrow (13th). On Wednesday (10th) I pointed out how very close the deadline was. He immediately turns around to me and says that I need to help her fill it in. And I am angry that he has had so long to fill in this form but now I have to do it because he’s left it to the last minute. I’d probably have to do the physical writing anyway, but I’m still annoyed.
It’s late on Wednesday, so I mutter to myself that we can’t do it tonight and that she has too long of a day at college on Thurday so she probably won’t be able to do it Thursday evening too, which leaves Friday. He turns around to me and tells me that it needs done on Thursday, and tough if she’s tired. He also mentions that he might have some time Friday evening to check it, but we need to get the majority of the answers done for him first.
Thankfully, when my sister came home on Thurday, she said she’d had a good day and would be able to do the form after dinner (which I was cooking when she got home). We spent at least three hours going through that thing, and thankfully she was awake enough to give the answers in her own words until the last couple of questions. We both ended up going to bed at least an hour later than we needed to for how early we needed to get up, so she’s been very visibly tired this morning before she left.
There’s still a fair bit that needs filled in, contact details of her surgeon and photocopies of evidence and such, but we’ve got the bulk done for our dad to check later today. But even during the filling it out, I kept having to stop and physically breathe because something felt really off even though it was going relatively well.
So I know that this isn’t really much more that what I’ve always done and it only feels like a lot because I’ve been doing so little recently. And yet I feel irrationally angry about how I have to help her. AIBU?