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?

I mean, that’s kinda the overall point. There’s no uniformity in regards to how people manage and/or react to such a situation, it’s very individual. Hence why you can’t reasonably tell people what they will or won’t feel.

Thank you @Stripedbag101 as he needs bathing, hair washing (he refuses to shower), help with cooking, cleaning and most tasks of daily living. Plus a slight incident that he doesn't like sets him off ranting for up to 4 solid hours, followed by fits. But "surely I should manage his care".

I have put exactly that scenario to my DM - that failing to plan increases the risk of DB Ending up somewhere awful. Still no move by her to sort things. I'm out of begging her.

You didn’t answer my question about his age, though I expect your parents age is relevant too. Perhaps they’re hoping to outlive him?

@CoastalWave

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

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 it is your husbands problem, as surely he wants him cared for properly? So will DH be moving out to his parents house to care for his brother full time or are you leaving and DBIL moving in, given you seem to infer OP should care for her sibling.

I no it’s still too much to ask but could you start the ball rolling yourself as a compromise of sorts.you don’t even need to tell them.and I’m sorry it has to fall for you.
but do you think you could research or contact some places or at least a health care provider to see what steps would need to be taken.
Because there is all sorts from funding,to area,to what kind of living and what he’s actually able to get relating to his conditions.

What exactly do you expect them to have in place? Have you actually ever had to deal with adult social services? Do you think there’s a nice place sat waiting in a perfect care home for when the time comes? She would have to move him now, and at her age and fragility deal with everything else that comes with it.

After having all this to deal with with dad who had Alzheimer’s two years ago, I also have an autistic sixty year old DB still living with mum, 86, who will become my responsibility when the time comes. I love him dearly, but he comes with many problems, including some perception of being in charge of me because he’s older and male, anger issues, inability to manage money or institutions such as hospitals, DWP, social situations etc.

I don’t want him living with me.I’ve already spent ten years caring for my parents. I’m not going to carry this on until my grave.

The only thing my mum has been able to sort out is leaving his share of the money to him in trust, otherwise it would end up in someone else’s pocket as he’s very vulnerable and trusting of lovely Russian ladies on the internet. She’s tried to have discussions about what would happen when she dies but he won’t discuss it.

He thinks he will stay in the house and I will make sure the bills are paid and drop his shopping off each week as I do now. If the boiler breaks, or he needs a gardener he will just ring me, like mum does now.

No.

To the OP, your friend is no friend and I bet she has experience of this. 💐.

We have very clearly said to daughter that we do not expect her to take over care of her brother when we die. It is not her responsibility. I want her to have her own life. I want her and her brother to remain close but I want them to have a sibling relationship. At the moment they have great relationship but we are very careful that my daughter does not have to take any responsibility for his care and she gets one to one time with each of us as well. I hope she will want to visit her brother. Caring is a huge responsibility and I would not want to put that pressure on my child. I want her to live her life and have a chance to do what she wants. Don’t let anyone make you feel guilty. I am happy bring my sons carer but is certainly not something I want my daughter to think is her responsibility.

When mum died there was no care home place available for my brother. He had carers visiting him organised by social services, but due to his propensity to set fires when left alone the house was uninsurable. It was the most incredibly stressful time for everyone. After a month he had a fall and was found by a carer. He was taken to hospital and his social worker told me not to take him home from hospital. It was 6 weeks until he moved to his care home.

What exactly do you expect them to have in place? Have you actually ever had to deal with adult social services? Do you think there’s a nice place sat waiting in a perfect care home for when the time comes?
this is a VERY good point. It’s all very well thinking things should already be in place, but achieving that is a very different thing n reality than the theory.

And if the OP was living overseas... On a different time zone... Would she still be expected to do this???

Or is it cos OP has boobs that she should wish this for her future life...

Women (in general) who judge other women like this set equality back several hundred years.

I don’t think it’s because OP is a woman, I think it’s because she’s his sibling and I would imagine the same would be expected if she were a man. As for different countries attitudes to disability or if familial responsibility/support is “old fashioned”, I would imagine it’s very much more nuanced than that and blanket statements are hard to justify.

I think what makes it harder for people to have an informed opinion is that there is really VERY little understanding of what is provided by the state, in what form and how it is accessed. A bit like education what people think happens is very far from the reality and those who haven’t achieved provision are rarely “in denial” of what that means or lazy or unthinking.

None of that changes the fact that it’s not OP’s responsibility.

aside from that, there is certainly more pressure placed on women to take on caring roles. The fact that OP is a woman is indeed pertinent.

Yes of course women shoulder the majority of caring in all spheres. I’m not sure what your point is?

Is it that OP can’t be forced to care for her brother? (Or indeed her elderly parents). She knows that or she wouldn’t be considering it. I personally don’t think it’s unreasonable for families to care for each other, though I am certainly not suggesting OP has to be the one to do the hands on caring. I think that’s normal (because in my family it is).

Lots of unkind judgy comments from people who have absolutely no idea what 24/7 care is like, just like that stupid friend of yours.

I would judge HER remark and definitely wouldn't want to be around someone so rude and ignorant.

In your place OP, I would start looking into what the options are for placing him somewhere now.

Your father is deteriorating and as soon as it gets to a certain point, he will have no say.

At THAT point having the information ready for your mother will be helpful.

You can spell it out to her clearly that while you will be involved with your brother (whom it is clear you care about) you will not be involved in his day to day care.

As a parent I would not want one of my children to sacrifice their life for a sibling.

That would be, IMO, an obscenely selfish request for any parent to make.

Instead of stressing about it, which won't help you at all, investigate all and every option in the locality.

So when you can move on this, you are well informed and prepared.

Wishing you well.

Lots of unkind judgy comments from people who have absolutely no idea what 24/7 care is like. I’m not sure how you would know this or who has suggested OP provide 24/7 care? I mean we don’t even know if the “friend” is free of dependents. I think OP has a dF problem that is bigger than this one issue, but she is presumably capable of planning a path through all of this there being more options than “no contact” or “24/7 care”.

"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 🙄."

The above states quite clearly the OP's brother requires 24/7 care and she has not suggested anywhere that she wishes to go "no contact".....which posters are clearly making up as she NEVER wrote that.🙄

She clearly stated she cares for her brother, would have him to stay with her, but is not prepared to give up her career to be a FT carer to him.

It's all there in black and white if people would have the basic courtesy of reading her posts.

I'm so sorry you had to deal with that, it must have been incredibly tough but it sounds like the absolute best outcome for everyone.

So of you're essentially agreeing with OP that it's fine to limit her role to having him over some weekends then why all the guilt-trippy comments like "I hope any of my children would help each other in adversity but each individual must choose what they think is reasonable"?

I don't think you realise just how much pressure comments like yours put on women to be carers.

my guess would probably be far more accurate than most

You really come across as quite superior and preachy.

My point is that OP being a woman probably does have something to do with the expectation that she’ll be there in a caring role, more so than a brother would be.

I know full well OP can’t be forced to care for her brother, and nor should she be. No, there’s nothing wrong with siblings choosing to care for one another, but there is something wrong with the expectation of it. It’s entirely up to OP what role she takes, and she’s not wrong to choose to take no role at all.

I think a lot of misconceptions arise because people who've not been involved with caring for someone like my brother don't understand what it's actually like 24/7. My brother can be charming and if you've spent time with him on a good day you'd think he was very easy to look after. However a great deal of the time he would be quite frightening for most people to cope with, and also needs overnight waking care. Luckily his care home absolutely understand him and his needs.

@Obki it’s not “preachy” to say you are well placed to guess at the sort of levels of care needed. I don’t think it’s guilt tripping to say I hope my children will look after each other in adulthood, I think it’s a fairly commonplace idea. I’m not sure why it’s offensive to agree with OP that she should decide what form her caring should take. You seem determined to push back against my posts without really thinking about what I’ve actually posted.

@whumpthereitis i don’t think I’ve said she is wrong just that she can just have her brother for weekends and that her parents way of caring is not the only way to care.

Its not clear how old the OP is or how old her parents are and that is actually far more pertinent than her sex.

You did the right thing by him.

I wish more families would consider this sooner and not have the rod in their back insisting on caring for someone they're really not capable of caring for.

It warms my heart he finally has a nice life with friends and proper care.

I agree this story really made me smile. A lovely ending for everyone.

Ah, the rose tinted glasses of those who've never had any caring responsibilities thrust upon them, or never even had to consider how their lives would change.
Ignore your friend.