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.

It’s usually women being sacrificed to be careers, too. I agree that it’s parents’ responsibility to care, where possible, for their child, and, if not, to find that child residential or other provision in their lifetime.

I do know someone in his 40s who is preparing to take over care of his brother with Down Syndrome when his parents are no longer able to care for him, but that was a long-discussed plan arrived at in the family as a whole, based on everyone’s needs, capacities etc. Friend is longterm single, childfree, uninterested in longterm relationships, and will be able to retire comfortably as early as needed, as he has a very highly-paid job and few outgoings.

Most siblings do not want to and won’t.

some families effectively groom a child (usually female) into doing it.

YADNBU. I have two autistic sons - the older is likely to be able to live independently. Younger definitely not.

There are no expectations older son is a career for his brother from us. That would be a tragedy for him and stunt his life.

No, that absolutely shouldn’t be the expectation.

It sounds like her autism is worse than it appears, if she has a degree and hasn't made her way into the work force, she is comfortable at home.
A colleagues DS has 4 degree's, highly intelligent has no plans to ever work, he'd need a lot of support.
It obviously is not the life I'd choose for my DC.
I think you should keep out of it.

That’s awful! Poor sister!

Is your FIL in the picture? Any care should be split between him and MIL, surely?

The sister should be equally as free to work as your DP is - (edit - and the other siblings are) why is there a distinction drawn? I mean I know why, they’ve done this to her because she’s female, but it’s appalling.

As a pp said, I guess she’s been groomed into it, but it’s awful.

I am the sibling of an adult with a range of additional needs, including ASD.

I remember being about 21, nearing the end of my degree, lying in bed and experiencing a wave of panic as I realised that my DPs were expecting me to step up more and more with my DSis. That it would all fall to me eventually. I decided at that point that no way was I going to be that person. I resolved to make my own life and not step up.

Putting it bluntly, I did enough during my childhood. I love my dsis but she is not my responsibility. Fast forward many years, and my dsis lives semi independently with the support of carers and a key worker. She is happy and she enjoys her own space.

I believe that the decision I took was the best one for both of us.

So no, a sibling should never be expected to take on the caring responsibilities. They should be encouraged to forge their own path. Most will have made sacrifices during their childhoods- this should not continue into adulthood.

I think it’s shit of the parents to expect that of their child. As you rightly point out, she’s been to uni so I assume she has ideas in what she wants to do but is now restricted.

It’s a bit like people again usually women who are expected to look after their elderly parents, because they ‘don’t want to go in to a home’. Well tough, let your child live their life instead of being selfish and expecting them to look after you.

Maybe the mother needs to work to keep a roof over their heads? Maybe the sister wants to be the carer for her brother rather than work? We can't know the family dynamics so best not to judge.

I have been a full time carer for my adult son for the last 12 years since he left education. It's incredibly hard, demanding and lonely. He's recently moved into supported living and is settling in and getting used to a new way of life. I made that decision because I'm not getting any younger and I don't want his brothers to be left with a difficult situation to sort out when I'm no longer here. But it's been the hardest thing I've ever done, handing his care over to other people.

No FIL as he left years and years ago (15+ years)

I would just assume as a parent, that if my child went to uni etc they'd have aspirations etc, so I wouldnt even LET them be a full time carer

I have a son myself and if I ended up with another child with complex needs, the responsibility would never fall on him. If anyone left work, it would be me or DP

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 it's not possible because she is brothers carer.

Does he think it's fine that he gets to have a career and family but his sister can't as she's the carer? Why her and not him?

I dont know. He says he wouldnt be able to do it. His other sister works now in a different country.

I assume its because his sister is the eldest and its just been assumed this would happen

I assume its because his sister is the eldest and its just been assumed this would happen

I think that's a really shitty attitude of your partner, tbh.

I have a son myself and if I ended up with another child with complex needs, the responsibility would never fall on him. If anyone left work, it would be me or DP

It's not looking like it would be your DP, is it?

If anyone left work, it would be me or DP

Well, look at the facts in front of you, he's extricated himself from any caring responsibilities and let it land on his sister's shoulders, and he says nothing because it's in his best interest.

So let's not beat around the bush - it'll be you.

I know someone who has had their whole life overshadowed by their disabled sibling (think to the extreme of not being allowed to go to parties / sleepovers / friends houses as her sibling couldn't "do the same). She has had to deal with a lot of administrative issues for her sibling from a very young age as English wasn't her parents first language.

She's now in her 30's, still lives at home (albeit in a granny annex - family are incredibly wealthy) and despite working FT she helps with her sibling most evenings and weekends. She has a long term partner but they have no plans to live together. Her parents are aging and she will need to take care of her sibling when they pass. As a couple they rarely go away for longer than a weekend and all the holidays they have taken in the past decade have been with her parents and sibling.

I think her parents have been absolutely disgusting by putting this level of burden and responsibility on her for her whole life. Of course she loves her sister and her parents and doesn't know any different. And of course there is a brother who has had none of these expectations places on him

As a mother of a disabled child it breaks my heart to think of my older 2 being penalised for their sisters disability. There is absolutely no expectations on them to take care of their sister. I want them to live full, independent, exciting and happy lives. I don't want their lives to be dictated by their sister.

Well, look at the facts in front of you, he's extricated himself from any caring responsibilities and let it land on his sister's shoulders, and he says nothing because it's in his best interest. So let's not beat around the bush - it'll be you.

Absolutely. I'd be livid with my partner if that was his attitude.

If the sisters not working or putting into a pension she will have a miserable old age too. Perhaps siblings could all pay into a fund or trust for the unpaid carer.

Does his mother own the house? If so, she will probably leave the house with DD.
My aunt looked after my uncle when my DGM died, the deal was aunt inherited the home.

Yes house is owned by MIL with no mortgage now either, completely paid off

Fairly large house - think its a 5 bed as they all had their own rooms growing up

Yes, very sad thought IMO

On one level of course you're right, it's not fair. On another you didn't see what actual choices they had to pick from. It's possible it was the least worst, it's possible it suited her at the time etc.

You see a lot on here very black and white statements like I'd never give up work to be dependent on a man, I'd never go PT because pensions, I'd never let my child watch TV or eat a hotdog or choose not to go to school ("I'd just make them go, they have to so I can work"), I'd never let the sheets go more than 7 days without washing. I think that shows a lack of understanding of how limited other people's choice can be, what roads they have travelled to end up in these places.

I'm a SEN parent, I get judged left right and centre for what people assume are bad choices. Often it's not really a choice at all, but where we have ended up when Plan A through to Plan Y have failed. Years of raising very disabled children without sufficient support tends to exhaust family resources - not just financial but energy, mental health, physical health etc. It's easy for someone who's slept more than 4 hours a night for the last 20 years to judge someone who hasn't.

Instinctively I would feel it's an unfair burden but I don't know their circumstances. I wouldn't assume she wants a specific career though, not everyone studies with the intention of using it for a defined career.

How does he know that he would be summarily incapable of doing it - whereas his sister definitely can?

Does he think his sister is somehow luckier than him because she can do it?

We used to know a family where there were parents in their 80s, a son with Down's and severe learning difficulties in his 40s and a daughter in her 50s who didn't have any disabilities.

It was heart-breaking hearing this middle-aged man running after and calling out for his mummy; seeing this exhausted elderly woman being run ragged by him and the knowing looks on his sister's face as she realised what would be coming to her before very long.

I would only allow it if it was what the sibling truly wanted, they were an adult and there was a lot of discussion around it. I would definitely see it as my job to provide care for them and wouldn't expect it from siblings.
It's not the same but I've heard of parents having a second child in order to care for the first and I think it's awful to put that expectation on someone