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?

Surely living in supportive living would be better for him? He can socialise with others who live there, have carers, all his needs will be met and you can still visit whenever you like.

Who does the majority of your brother's care? Should your mother die before your father, do you think he'll still be against respite or continuing residential care?

In your position I'd be talking to organisations such as Mencap or larger autism charities so that you are aware of the options for him as an adult. This is a major area in which family members need to be informed. Should it come to the point that your parents are no longer around or can no longer manage him and look to you, at least you'll be able to hit the ground running.

YADNBU

My DD is autistic and may not be able to live independently.

I will make it clear to my ofher DC (they’re all too young now) that is is categorically not their responsibility to look after DD.

I will do what PP suggested and look into alternatives at some point.

I don't think it's even the case that relatives always provide better care. A trained professional will probably go further, and do better, for a close relative, of course.But if an untrained, exhausted relative is left to get one with it, the standard of care will inevitably be lower than if the person was cared for by shifts of trained, rested professionals. The extra touches might be missing, but the basic standard will be higher.

You’ve gotta love hypothetical caring… oh how easy to believe you’d do it in a heartbeat when there is zero chance you will be in that situation. You are about a million miles away from unreasonable.

My sister has complex mental health issues. At the moment she goes to stay with my parents for a break when they escalate. I imagine in future she will not be able to live independently. I have made it clear I will not be her carer and my parents support this.

The local carers centre also supports that I have no responsibility to take her in.

The best thing you could do for your brother is agree to be his advocate.

Providing full-time care are the expense of your own life makes no sense. One person can’t do that adequately anyway. He will suffer as much as you.

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. Freed of the responsibility of physically caring for him, you can continue to be his sister and share that bond and friendship in whatever way you have so far.

I would take your mother aside and ask about what kind of legal arrangements they have set up with regards to your sibling. Figure out how to make sure that you have the medical and legal authority to be his advocate after your parent’s die or become incapable of caring for him. Your father should not object to that because you don’t have to be explicit that the plan is not for you to give up your life to become a nursemaid.

right now, I would also start looking to see if there are any day programs that would benefit your brother. As your parents age, they are going to become less capable of care. If he essentially has daycare, it could make a huge difference for all of them. It will also put him in contact with the right support people to help with future needs.

I know your parents don’t want this kind of thing, but there is going to come a point where they have no choice but to accept help. It will be easier to have an idea of what is available. Your brother would be better served by starting now so there are fewer adjustments in his life, but your parents may not understand that.

YANBU. Your view sounds very balanced to me.

I've written about my family's situation many times on here as the crisis has played out this year for us. My brother is in his late sixties and has severe epilepsy, autism and LDs. He can be very aggressive and can dominate women and be unkind to children. He lived with my mum all her life until she died at 93 this year. She did everything in her power to try to keep him at home with 'family' looking after him. This was great, apart from the fact that 'family' all died off, apart from me. I told her repeatedly, plainly, year after year that I would not become his mum when she died. She ignored this.

It was a total shitshow when she died as there were no arrangements in place for him. Social services were great and eventually after quite a lot of trauma he was placed in a Mencap care home where he is living a brilliant life and has friends for the first time ever. He hadn't had a shower or bath for over two years because nobody could get him to do anything he didn't want to do but he is now showering regularly, eating properly etc.

I still get people criticising me for not having him to live here with me, but I'm learning to harden up to it. I've got one life to live and he would never be as happy living with me as he is with his friends now.

This…

YANBU. I have two sons with ASD and my younger is likely to need significant care for his whole life. I’ll be making the necessary provisions for him and encouraging as much independence as possible even though the thought makes me feel really panicky.

My older boy is much more able and I would never expect him to be his younger brother’s carer.

A good parent does all they can to ensure they’re children will be ok without them.

Easy for her to decide what you should be doing for the rest of your/his life, isn’t it? Perhaps she should do it, if she’s so invested.

No, YANBU.

YANBU.

I'm in a similar family situation and I won't be becoming a carer either.

I've seen some family members willingly become caters and feel perfectly happy and fulfilled doing it.

I've seen others basically lose their lives and independence and have nervous breakdowns, and have been badly injured by the person they're caring for.

Every situation is different. Nobody should have to become a carer if they don't want to and if they don't feel able to.

Yabu for caring what an outsider thinks. Toughen up, op, you will need that hard outer shell and a no fucks to give attitude.

I completely agree with you btw.

Because he has serious, untreated and now intractable special needs such as OCD, challenging behaviour, a mental age of 6, anxiety, obsessions, non-stop talking and uncontrollable epilepsy. It would absolutely mean hands on caring 🙄.
Caring for someone doesn’t have to mean hands on caring however dependent they are. It sounds like your fathers role is very different to your mothers, and yours might be different again. You can build whatever model suits you and do because at that stage you will be making the decisions. Your friend sounds ridiculous if she doesn’t understand that a sibling with their own life will manage things differently.

I'd let him be cross, but occasionally ask if he has sorted anything out yet as you will not be available

She’s being outrageous

She doesn't actually have to do anything at all.
Social Services can step in once her parents have gone and make decisions if necessary.

This.

I'm not sure I'd even be an advocate in such a situation tbh. Caring is horrendous.

What will your dad do if anything happens to your mum?

You need your own plan, just in case.

I get you and feel for you. I have disabled parents (1 left now). The amount of stupid expectations people had of me was unreal. When I was 6, I was told by a church goer, that I must stay up late (11pm) every night to help my parents?! WTAF?! I'm sorry but they didn't make me, to become their carer. Especially when they made other disabled children, before me! I check-in on one parent and offer support e.g. shopping and banking, but as soon as it becomes too intense (e.g. daily care) he's going into a specialist home. I've spent my whole life caring for them and at some point my siblings. I have my own life, children, home and husband to take care of.

So I feel you, and I hear you. Your feelings matter and are important. People are stupid, and don't realise the full implications of what they're suggesting. A caring home with qualified staff is a good place for him.

She obviously doesn't understand the implications of caring for someone 24/7, you have the right to be annoyed but also take on board that they have no experience of full on care and how exhausting it is and all it entails.

Much like @notameangirlhun I would never expect my daughter to care for her older brother, who is autistic.

She doesn't actually have to do anything at all.. Neither do his parents really. I hope any of my children would help each other in adversity but each individual must choose what they think is reasonable.

This. My ds10 has severe needs and ASD. It's not his siblings job to care for him once an adult. I pray to God that I can get him to live independently whatever that takes. Getting respite and help is hell, I don't want that future for them