AIBU for hating that I have to help my sister?

[RebeccaBlue]

Background information:
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?

[KiannaMcDowell]

I’d say it isn’t surprising that you’re upset. Nursing is a very stressful job. Before you turned 18, you were volunteered for that job. You can’t quit or even take an extended break without having a replacement lined up, because it’s your sister’s health on the line and nobody else is volunteering to do it. So yeah, it’s perfectly understandable that you feel this way.

Which isn’t to say that people shouldn’t care for their loved ones or that it’s not a very good thing to do so. But it should be acknowledged that a labor of love is still labor and people can’t work 24/7/365 no matter the motivation.

For the paperwork, it’s your father’s job, but he ignored it for a few weeks, shifted the responsibility onto you when the deadline drew near, and disregarded your sister’s energy levels in order to get something done that should have been done weeks ago. That’s kinda unreasonable on your father’s part. So that would be pretty infuriating on its own.

And some psychology stuff that may or may not be relevant: sometimes people suppress their emotions when they’re in a difficult place. They still feel the emotions, but they’re muted. Later, when they’re in a better place, the emotion comes bursting out. Think about that scene in a movie where someone is exhausted, but then they get chased by a monster, and suddenly they can run again for as long as they need to. But the moment they’re safe, they fall over and can’t move anymore because their exhaustion has caught up with them. It’s kinda like that: once you’re in a better place, you’re finally able to deal with any pent-up emotions so that’s when they smack you in the face. Plus, if someone has a history of being unreasonable to you, then the brain might connect the dots and dump all unresolved emotions onto the latest instance, making you progressively more upset every time it happens. It might be small by itself, but it’s carrying the weight of a lot of other things.

So I’d say that, as long as you’re not taking it out on your sister, you’re being pretty reasonable. Also, I’d say you deserve a vacation and/or mental health retreat.

[Sillsallad]

I’ve never cared for a relative personally, but I worked as a nurse and came in contact with several people who cared for their loved ones.

You are entitled to feel like this. Everyone I talked to, who cared for someone at home, had phases of complete despair, frustration and sadness. It is a hard thing to do, mentally and sometime physically. It doesn’t mean it’s always like that, there are good phases too, and the negative phases does not mean you love your sister any less.

A very important thing is communication, which you mentioned is difficult because of the autism. Still try to talk with your dad, maybe he’s feeling the same and you can support each other better knowing this.

Is there some kind of service you can use, like a short term care, so you can charges your batteries and get some proper me-time?

[Celoptra]

parents of disabled adult children only seem good at procrastinating don’t they? /s I’m the disabled adult child in my family. And my parents need to fill out a form for me to get reimbursed for my new gaming computer. And they are not doing it- its driving me crazy and that form needs to be in before the end of this month! If I was my own fund manager I would have gotten it done in the first week and not delay it

[Murdocku]

I see you already have 2 very good answers here. I also don’t have personal experience, but I do work in healthcare for people needing 24/7 care. In an office, which has less personal contact, but new stories every day about people.

We see a lot of people going under trying to take care of their loved one themselves. By the time they are almost tipping over, they come knocking on our doors. The people who have the hardest stories are those who feel not supported by others in their family, or even the ones having arguments about what’s best for their loved one.

Offcourse most people want what’s best, and they feel that best is if they provide care themselves (which a lot of times is true). But that care cannot take over your life, that’s not healthy. And it sounds that for a while, it was in your case. It’s understandable that, after seeing how it could be different, you don’t want to go back that far. An experience like this, however ‘small’ will feel like that though, and could be very hard on you.

I’d say it’s good to look into Sillsallad’s suggestion. Are there ways to support your sister, making it easier for you AND your dad? Try talking about it, or even just ask him to read your post here.

It’s good to see your sister has improved, I wish you all the best with it!

[RebeccaBlue]

Thanks everyone for what you’ve said. It helps to know I’m not just making this all up in my head.

I’ve talked to my dad about this a couple times in the past, but it hasn’t really gone too well. Best result I got is that he’d take care of set-up for her regular medical procedure while I’m making sure she doesn’t drown. But even after that he was finding excuses to ask me to do both again. On the bright side that was great practise for learning how to say “no” to him.

But the worst part is how he makes me feel like I’m being a whiny little brat. Because he’s been doing all of this for a lot longer than I have, and he’s the one who’s been suffering from sleep deprivation for the last X years, and I know how very close we came to “losing him” when he was reaching his breaking point before I could help out fully. To his credit, he didn’t tell me about what was going on then until after I turned 18. And he also lays on the compliments saying how he wouldn’t be able to cope without my help, while also telling me that I just need to “get on with it” like he’s had to for the last [Sister’s Age] years.

But sometimes it feels like some kind of double standard. If he’s tired then we should know he’s going to be grumpy and not irritate him, but if I’m tired then I need to not let it affect how I’m behaving. And he’ll complain about how none of us appreciate how difficult life is for him, while also complaining how whenever I’m in a bad mood everyone has to walk on eggshells around me. I never mean to take anything out on everyone, but I do know I’m a lot more likely to appologise to my sister than to my dad. Which reminds me, he’ll apologise about something to someone and then immediately turn around to me and be all “Look at me! I can admit when I’m wrong!” which he thinks I cannot do. This is turning into a rant, sorry.

As for getting someone else to look after her… most recently I have been that someone else for my dad. She was supposed to have carers who would help us but most quit not long before the lockdown started and my dad got blocked in trying to find more. When the carers were around still, they mostly just made sure she could go to school. My dad tried doing that for my sister when she was in primary, and that’s what pushed him to his limit, so he’s deliberately not let himself be trained to enter a high school.

Now that her condition has improved, it might be possible that someone could look after her without needing the two weeks (min) training that was required before. But technically I don’t have any control over that and there’s no way my dad would let it happen because he’s overprotective. Rightfully so, we’ve had people cause issues in the past, but still overprotective.

My aunt texted me earlier saying she’s visiting next month, and she’s the one person irl I can actually talk to about this stuff so I think I’ll bring this up to her then. But my dad hates when I complain to her because “you’re basically trying to pit one parent against the other.” Y’know, despite the fact my aunt isn’t a parent.

He would definitely not be impressed that I’m talking about any of this to anyone online, despite keeping it anonymous. I can imagine what he’d say already. “Those people don’t know you so they won’t know about all of the facts you haven’t told them that definitely change the situation to be in my favour, so they’re only agreeing with the distorted version of events you’ve told them and not what’s actually happening, and now you think you’re so smart and independent, don’t you, etc etc etc.” So I think that’ll be a hard no to showing this to him.

Thanks for helping me feel like my complaining is actually justified for once.

[KiannaMcDowell]

Are you able to leave? And maybe take your sister with you or send her to a nursing home? Because your dad is throwing up a lot of red flags: forcing you to cater to his needs while mocking you for your own, a ton of projection, isolation from people who could tell you how messed up the situation is, threats of death looming in the background. Like, it sounds like he’s trying to prevent you from even thinking of leaving, from disagreeing with him, or from even having any emotions that would interfere from taking care of your sister. That is really not okay.

[RebeccaBlue]

I don’t know how to leave. I’m not sure if I want to leave. Sometimes living at home is really convenient. He’s stopped charging me rent under the condition I do more of the chores, and that should be a good thing. He can also be really helpful sometimes, like with helping me figure out which jobs I am okay to apply to and which I wouldn’t be able to cope in. But other times I just want to not have to deal with anything anymore. He keeps saying he’s planning to be around a lot less so we’d basically have the house to ourselves most of the time anyways.

[Dave_Harmon]

You are not being unreasonable – as others have noted, you got drafted into this early on, and are bound by your sense of responsibility. But there’s a more basic point here that I don’t think has been mentioned:

Your family has a labor deficit. That is, you have a deeply ill person who needs intensive and near-constant care, and you simply don’t have enough people to cover the needed labor. In situations like this, caretakers are inevitably subject to burnout. For the sound of things, your dad has already been hit fairly hard, to the point where he’s “blocking” on relevant tasks. If this goes on, it can wreck your family and leave your sister high and dry.

The upshot is, You need to find someone to come in and help with this.

ETA: On reread, I see Murdocku covered part of this, but more generally.

[Snowy]

I admit I skimmed this post a little because it’s late and you posted a huge amount of information… but here goes.

Are you being unreasonable for being annoyed? It sounds like you and your dad are supposed to share responsibility, and he shifted that onto you… no, you’re not unreasonable here.

But your sister - who I assume you care about deeply - also depends on you and your dad for care. I know it’s a lot of effort, but she does need you. I don’t think you’re unreasonable, I can definitely understand it, and I hope your sister does show her appreciation for you (And it seems only you) helping her to live a semi-normal life.

[RebeccaBlue]

Good news is that my aunt is coming tomorrow. I’m hoping to have the opportunity to talk to her alone so I can get her advice. She’s really smart with life stuff. But also feeling really selfish that I want to waste her holiday time on this.

[Bibliovore]

Your aunt surely knows the situation, as you’ve said she’s someone you can talk with about it, yes? If she’s fully aware, smart with life stuff, and has chosen to come visit regardless, it seems really unlikely she’d consider your asking her for advice about it to be wasting her holiday time. I’m glad you’ve got a little more emotional support and counsel on the way.

I agree with others that bringing in outside help is crucial for your overstressed, burning-out family. Maybe your aunt could help convince your father to try again with outside caregivers – and as stressful as it might be to try out a number of people, it would be vastly better all around if you can get more of the help your sister needs. There may be other programs/assistance for which your sister is eligible, too, and maybe some that weren’t available before she reached adulthood. If she has a care coordinator and/or a social worker, perhaps they could help identify other resources and options, or even recommend specific really good caregivers.

Are you seeing a counselor or therapist yourself? If not, may I recommend it? Doing so can be a really good way to help work through the wholly understandable stresses surrounding caretaking and family issues, and could make it easier for you to carve out comfortable space for yourself amid everything.

Good luck and good wishes to you!

[RebeccaBlue]

I feel like I have severely understated how much better my sister is now. She can go to college and have showers by herself now and the only 8 kilo backpack is reduced to one light piece of equiptment in case of emergency. So when I said I’m basically just being lazy nowadays, it really is just laziness since there’s so much I should be doing.

Unfortunately there aren’t many services in my area. For autism there is just the one organisation and they will only help children. My dad is very stubborn and has been saying he’s fed up of “professionals” being in every aspect of his life and telling him how to parent for a while now. He’ll ignore the social worker’s emails because “I told them not to contact me and just let me get through this” (this refering to the disease which may or may not be blocked on here) and if he notices he hasn’t got an email for a while he’ll happily tell me how they’ve finally learned to leave him alone. Only to complain again the next time he’s contacted.

Basically he’s decided he’s only doing the bare minimum to parent nowadays. I actually feel really bad because of the one time he did actually ask the social worker to get her help, and there was supposed to be a meeting set up so he forwarded the email to me and I forgot to do that.

I’d been trying to encourage her to talk to the support people at her college, but she was really nervous about approaching them. I’m not her parent so there’s only so much I can do. Yesterday I found out they had been trying to contact our dad to ask him what help he needs for weeks and he was only just getting back to them. She’s meeting them next week so hopefully that will help her with stuff.

I tried seeing a therapist for unrelated reasons a couple years ago. It didn’t go well because their focus had nothing to do with me. I kept feeling like I was wasting their time with just me when they could have been helping people who needed it. I am trying to get past that attitude and should probably try looking again.

This ended up a little longer than I intended, sorry. Thanks for all the kind words.

[Bibliovore]

I’m glad your sister is so much better! That’s got to be great for all of you. I’d argue that it’s not laziness to not be thrilled with having permanent caregiver responsibilities for an adult family member, though; even if those responsibilities are now easier than they used to be, they’re still ongoing and taxing and time-consuming.

On the subject of available services: It sounds like what’s affecting your sister is a lot more than just autism, so I was wondering whether there was anything further for adults with disabilities that might be able to help her. It might not be too late to set up that meeting with the social worker, if you’re up for doing so. It’s good that you’ve been encouraging your sister to talk with the support people at her college, too – it might be worth asking her (if you haven’t yet) why she’s nervous about that, to discuss those points and try to help her get to where she can reach out for help from people who are there to provide it.

For whatever it may be worth: If you were seeing a therapist who wasn’t focused on you, that therapist wasn’t doing well by you. You are under a ton of stress and are also a person who could use some help, and therapists are paid for their time, and you deserve a good one and assistance with all this. Truly!