To be annoyed friend assumed I'd care for DB

[PlinkPlonkFizz]

My DB has autism, learning disabilities and challenging behaviour. I love him dearly and understand him very well, enjoy his company but also find him very challenging as my parents indulged him. They rarely used respite when we were growing up and DB comes first ahead of everything which I understand but also feel frustrated by sometimes.

Talking with a friend recently I said I would not assume the role as DB's full-time carer when my parents die. She said "oh, you're very hard". I was really furious because I think she has zero idea what it takes to care for someone like DB, but is happy to judge me. I don't think I should have to chuck my career away either. AIBU?

@PlinkPlonkFizz

YANBU. She is rude! I wouldn't do it either.

Kudos to anyone who looks after anyone with these kind of special needs and severe challenges. But I couldn't do it, and wouldn't do it... No way. Not in a million month of Sundays...

Same situation here and I feel exactly the same. I'd hope DS1 would be DS2's legal guardian but I plan to transition DS2 to residential care. I wouldn't want DS1 to be a full time carer.

This is completely ridiculous!!! You have no idea what level of care this disabled adult requires!!

I like the way @Ponderingwindow phrased it: "what you can do is make sure he has appropriate placements. You can stay informed of his care and make sure his needs are being met. " From experience of relatives in Nursing Homes and Residential Care I think it's vital for residents to have family who are watching out for them and visiting regularly. Advocate and be their champion, that's a very valuable contribution.

Do you really think that the role of parent and sibling as carer is the same?

Parents choose to have their children. Siblings don't choose their role.

Parents have parental responsibility and have to relinquish that, or have it removed, if they want to stop their caring role for under 16/18s.

There is no such legal responsibility that passes on to siblings.

You hope your children would help each other? Presumably you are talking aa the parent of a severely disabled child about their sibling taking on a caring role? If not, you are the same as op's friend. Clueless.

I know some parents who expect adult siblings to step in. Usually, as with op, they have done precisely fuck all to make the situation any easier. It's head in the sand parenting. Pass the buck. The parents I know who don't expect their other children to take on the caring burden have actually worked hard on solutions.

Actually @Stripedbag101 my guess would probably be far more accurate than most, but my point really is OP doesn’t have to be hands on caring to care for her brother. Most people have one parent who does the majority of the hands on care and one who still works and supports in other ways. OP would STILL be caring for her brother if she had him home for some weekends (as she has said she’d like to) and helped him feel happy wherever he lives.

Who is going to look after him?

Surely your parents have this in place? My PILS have fuck all in place for their oldest child (DH's brother) I"ve flat out said I'm not helping. It's really not my problem.

But my own brother...Surely you want him cared for properly?

Honestly people are dicks.

It’s really hard one op.
I know I will.but I also no it’s not a choice for me.there is no wavering or thinking it through.my whole being says I will do it.but not everyone is or can be the same.I don’t think if it were the other way round they would do the same for me.and the undertaking of that future is terrifying and having seen what it’s done to the families life and parents so far… well it’s going to be tough.
but your mum and dad need to get this sorted.your db life could be at stake if they don’t.I feel for your mum I do but she needs to stand up here.there is no choice but to sort this.
because I’ve also seen what happens to the sufferer if they are left.and bloody hell the futures have been dire.

@PlinkPlonkFizz How old is he?

Ignore your friend she is ignorant. Of course you would want to be part of your siblings life but your sibling is not your responsibility. Yanbu

My adult son lives in his own home with 24 hour 2:1 care. I hope his brothers take on some oversight (because it be frank it is needed, for people with learning disabilities to reduce the risk of early death or neglect). My son has very good providers but that can change in a heartbeat. I suspect youngest will be the one to take on the oversight because he has always worried about ds1 and I don’t think he’ll be able to not do it. I also expect he will end up eventually working in the area. Ds1 could not be cared for by 1 sibling anyway. He needs a team.

The problem with your parents not setting anything up is that if your brother’s behaviour is difficult to manage in a communal environment he risks ending up in a hospital environment. These are not good places at all - and people can get stuck in them for years. Bereavement is a big risk for admission due to loss of housing and care all at once and why I advise everyone to sort something in time.

The guilt tripping in this thread is awful.

I think @Sindonym s post is very well explained. People have ended up in totally awful situations without good planning and advocacy. It’s ludicrous to suggest OP can live happily while totally ignoring her brothers plight, and equally unlikely that she can provide the level of service her mother does and still be happy. But these are not the only options are they?

I’m in a not dissimilar position.
The guilt of not ‘wanting’ to become my siblings carer in the future weighs very heavily on me, but I know I couldn’t do it. I would never walk away or abandon them, but I find them very challenging, whilst accepting their challenges are not their fault (more guilt).
My parents refusal to plan ahead is very frustrating, but I know it’s a coping tool for them too.
In short, I don’t want my mothers life as I get older

At the very least it depends on the relationship, surely? As well as OP’s own needs.

she has no responsibility for her brother. It’s for her parents to sort, not OP.

Why is it ludicrous? I have a friend that did walk away from similar pressure. The level of pressure her parents out on her, as well as the nature of her sibling’s disability, meant that any chance she had of developing a loving relationship with her sibling was destroyed. She is indeed happy now.

anyway, I’m sure OP has had a lifetime to consider her options and has decided she isn’t willing to take on a role that requires involvement in his care. That’s fair enough, she doesn’t have to.

Ludicrous because it’s foolish to think it’s that simple @whumpthereitis .

When my parents grew older, and my brother (severe learning disability) was making life a total misery for them. The Social Worker advised them to let him go into a home for respite and then they discovered that he coped well. Mother became very ill, and he stayed in a home. It was then discovered that he was happier being with people of a similar 'standard of behaviour'.
He was the one that some of the others went to for consolation. He found a new status. Life was easier for him because he was not thought of as a child and he wasn't trying to keep up with 'ordinary' people. He was not automatically the dumbest person in the room. He realised this and made progress in his development.
He and the other residents operated on a different scale, a different way.

@Newnameforthistopic and that’s the dream outcome isn’t it? I’m so glad that happened for you all.

Who said anything about simplicity?

Being happy after walking away doesn’t mean it’s a simple process, and ‘happiness’ as a result doesn’t require it to be. Being happy as a result of a walking away is entirely possibly though.

I think we can just agree to differ @whumpthereitis

You know you aren’t, she’s a wazzock

If she’s a close friend tell her she’s talking out of her arse next time you see her, and if she utters anything so ignorant again you’ll thump her.

Amd then talk to your parents about assisted living for your brother, better he make that move before they die.

Sorry about your Mum @nokitchen. Your DBs situation sounds eerily similar to mine and I expect an epic shitshow when my parents die or decline to the point of needing care. Already my Father is showing signs of early dementia. That is fantastic your DB has a place he loves being in now, that's what I would love for my DB, and he would be really happy with friends and his own room in a supported living situation. Ignore the judgemental bastards with their comments.

My parents do not have this in place. They ignore the inevitable despite me begging my Mum repeatedly over the years to at least start using respite.

Your message is judgemental, which is what boards are all about I suppose. But of course I want him cared for properly - and that's not with me. I do not have the capacity to deal with him. Professionals do.