Would you depend on your child to care for another sibling?

[ellie09]

Hi all,

Just interested for your views on this as its something I have been thinking about recently.

DP has a younger brother who is 20 years old and has severe ASD and is nonverbal. He requires care 24/7, so somebody always needs to be in the house or supervising him.

DP has two other sisters. All siblings have ASD to varying degrees, although not severe.

DP's older sister (who is 33) cares for her younger brother every day while her mum works. She had been to university, and is trying to do some freelance work to fit around caring for her brother, but it is difficult to fit around her mums working hours.

I would assume if you went to the effort of getting a degree etc, that you would be wanting a career etc in the future.

Since her brother left school, the sister has been in the house all day with the brother while the mum works - for around 4/5 years now. The sister obviously still lives at home too.

I asked DP if she wouldnt want an opportunity to have a career, or have a relationship/own house as she is getting older. He said its not possible because she is brothers carer.

AIBU to think that if I had a child with severe needs, that it is ultimately up to me as a parent to provide those care needs, and I would never allow my child to sacrifice their career, relationships etc so I could work?

Obviously, I havent said anything to any of the family members, but its just some unspoken thoughts in my head.

He makes it sound like she was born as her younger sister's carer; not that she stepped up when nobody else would, and she is now thoroughly taken for granted in perpetuity.

We don't know what she thinks about it or what the situation is. She may be happy to live at home and do it. She may not want to get a job or may not be able to.
In general terms, I don't think one should ever expect a sibling to take on the carer role but it is impossible to comment on this specific situation.

I don’t think any of the family come across great here, but obviously it depends on if the sister WANTS to do it or if she just has been made to feel like she has to because mum hasn’t stepped in & neither sibling has stepped in.

Totally agree that mum shouldn’t have allowed it, mum should have carer’s in place or taken that on herself to ensure nobody else felt they had to do it. Siblings, if it was clear that mum wasn’t going to do it, should have stepped in to share it out OR speak to mum and sister as a unit and say is everybody actually happy with this, what are other options.

Right, so it's "not possible" for the sister to have a career or any life of her own, but it's entirely possible for DP? And he "wouldn't be able" to do what she does? (I assume he's quite able to do a more complex job of the type that brings status and money and a pension and all that). Meanwhile FIL "left" - so quite "possible" for him to decide he'd had enough of being a parent and check out, leaving the nearest woman to pick up the pieces? Funny what's possible for one sex and not the other sometimes, isn't it? Sister will have a wasted life and spend her old age in poverty. And DP will, what, buy her gifts or weekend trips now and then, and consider it even? I'm sorry, but he sounds pretty awful.

His mum was the one who encouraged him to move away and take a job 1.5 hours away from his family.

And did he say- what about sister? Who is going to care for brother? What’s the plan long term? Have they EVER had this chat as a family?

It does seem as though he, and everyone else, have been quite happy for sister to just do it with no offer of help, no discussion, no looking at options.

Just, “yep, I don’t have to do it so good for me”

Ops husband seems to be getting a beating for a decision made by two adult women about their lives.

It isn't his place to tell his sister how to live here life. Op clearly had no insight into how this situation arose or why.

Totally agree. My children have a sibling with similar needs - I would be mortified if they felt responsible for actually administering their care like that.

And now he should be encouraging his sister to move out, work and build a life of her own.

I bet she'd much prefer to have been able to have her own career and plan and pay for her holidays on her own terms, rather than relying on the likely guilt-driven charity of her brother to throw her a few scraps.

Dignity is priceless.

At the same time, should MIL have treated all the children the same in terms of pushing them into opportunities?

DP provides nice things for her as she has low income and does so much. However, living 1.5 hours away, he can't really help much in the day to day of his brother but he is a great asset to my DS life who has SEN and isnt his child. Also, his other sister can assist even less as she's in another country (theres been little mention of her and all the hate to my DP for some weird reason)

I wouldn't be at all surprised if the reason she is in another country is because the sisters are expected to be carers, you know being women and all, and that was her way of escaping. The brother however is free to live his life.

Sounds awful but if the sister is unable to work due to her own ASD, they may all depend on the Mum’s income to live.

All 3 of the other siblings are all high functioning and able to work and live independently

Yanbu. That poor young woman is being abused by her family and your DP and his other sister are colluding in the abuse. I hope someone helps her. I hope you see this as a red flag that your DP thinks it's ok to abuse people like this.

So the poor mother has no choice but to work to support everyone and rely on her daughters for care, the poor eldest sister has been unwillingly forced to do the caring, the poor youngest sister has been forced to flee from her family to avoid the care and it's all the middle child / brothers fault because he is a man so he caused it all

Absolutely not I'm the parent of a severely autistic non verbal teen, I have made it absolutely clear to my oldest son that i never want him to be his brothers carer
He has his own life to lead.

I think this is a very important point to consider, if you plan to have any more dc and even if you don’t (because you should make sure your contraception is bullet proof).

You don't seem to understand that although they're all high functioning to use your words, they'll have individual issues to deal with and you can't make assumptions.
Families have to sacrifice their time for each other, it is not ideal but life isn't fair.
I know you don't have to look after sibling.
How much help does your partner offer?

Every family is different, had different dynamics / values / expectations. And finances inevitably play a huge part in it. Families that can ‘throw money at the problem’ have more and different options to those that don’t.

personally, I think any parent that doesn’t work towards ensuring that the disabled child learns to be as independent as possible is doing them a disservice. A good friend has a son who is autistic. He went uni but was horribly bullied, and came home part of the way through the first year. Since then, he’s just lived at home, done his sports / hobby and occasionally worked part time. He’s 30 now, and has never had to pay a bill or take any responsibility. His parents are wealthy, they have a massive house, my friends has been a SAHM forever and still runs around after everyone. The parents have left money in trust for him in their wills, to be administered by his two sisters as he has never learned to do so. That’s not an option open to all families.

Ps You can't not treat all the children the same when they have autism.
You judge MIL harshly, many mothers who have DC with SEN are low income workers, including myself.
You are 1.5 hours away, your partner is no physical help, just mind your own business.

This worries me. My DIL has a severely disabled brother who needs 2 to 1 care at all times. I am certain that when her parents die she will want to take over caring for him, because she is a lovely caring person.
However that will mean both DS and DIL will have to give up their own jobs. I think no good can come of it. However DS is very idealistic and has a rose-tinted view of what people can deal with and he would definitely agree to this.
I've kept quiet and always will, but it bothers me that it's on the horizon like a volcano waiting to erupt.

I don't think this is on your partner. He isn't responsible for caring for one sibling and he isn't responsible for another sibling taking on the care. We don't even know if she wants to do it or not, so the posters saying your partner should do more to advocate for her just want to criticise.

I don’t want to blame your husband but can you help him see how your sister is not able to live her life. Can you ask him to encourage her to start her own life - focussing on her career and personal life. And organise with the help of other sister and mum assisted living for the youngest sibling?
The eldest sister may regret it one day and feel a lot of resentment towards everyone.

Well, apart from the oldest sister.

It seems that because this sister might get the house and because your DP buys her nice things, that’s being used to excuse the fact that, at 33, she is an unpaid carer and companion for her brother, and at this rate, will be at least till MIL retires (minimum 10 years away, you said?) if not beyond.

This has to stop and it has to stop now and golden boy (your DP) is the one who can kick start this.

Its a really shocking situation, like something out of a Jane Austen.