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.

Always amazes me why people have so many kids when there’s clear SN with the first ones. It’s always 3/4 kids too. Very unfair on the siblings but as pp said the kids are probably groomed into it.

His poor sister.
Says a lot about him that he thinks its her responsibility.
What a thoroughly selfish mother too.
That poor woman sacrificing her life for a sibling.

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

Well, I hope they leave it solely to the daughter who has got absolutely no income or pension.

OP, are you deliberately avoiding the questions around your partner's attitude here?

A friend has told her grandchildren that it's their job to look after their cousin with Down's. (The cousin is an only child.)

I've bitten my tongue. I'm hoping that she just meant that they should advocate for the child.

I am not saying I agree with it

Maybe it all goes back to misogyny and women being expected to do carer roles which is a wider societal issue?

Just to note, his younger sister also doesnt help or support.

@ellie09 would your partner and the other siblings be happy to speak to the parents and agree that the house is solely left to the caring sibling? She has sacrificed everything.

My aunt has Downs Syndrome and my mum had never been given that burden

As my grandad got older, my mum offered to take her in and care for her, but my grandad said absolutely not, and in advance, got her assisted living care and now she is thriving in this environment.

Before she moved, she couldn't cook, clean etc but since moving, she now cooks her own meals, does laundry and chores etc, plus gets the addition of socialization with others.

Im not saying it works for all, but assisted living/residential care should be discussed in situations like this IMO

Its something I would bring up to advocate for her, yes.

I do think DP mentioned briefly in the past that his sister would be getting the house, in the event of their mum passing

It's entirely up to the parent. It's the risk you take when you have children, that they may not be well enough to look after themselves and it's the parents responsibility to do it. It's insane the poor daughter is getting this responsibility dumped on her.

MAJOR red flag against your partner. Sounds like he has no sympathy for his sister who has had her life dictated by a child she didn't choose to have. It's not her job to be the carer of her sibling.

I can only guess that there has been some sort of feeling sorry for her mum and feeling obliged to step up as the eldest child.

Father left them when DP was 12 and his sister was 15, then their mum was left with looking after them all.

The youngest sibling is the severely impaired one. My DP and his younger sister are in the middle (they both have high functioning ASD) and older sister who also has high functioning ASD.

My DP and his two sisters all went to university, while the mum stayed home to care for the son, but when university finished, the eldest moved back home "to let her mum go back to work". My DP moved 1.5 hours away for a work opportunity and the younger sister moved to another country in the UK for employment and further education (she visits around 3 times a year)

What about the other younger sister who moved to a different country?

Is this a red flag also for her future partners?

This is really upsetting.

I have a child who is unlikely to live independently as an adult - we expect that she will live at home with support but not necessarily 24/7 care. Time will tell.

Our current plan - having not lived through any of this yet is that most of our money would go into a trust to support DD2. DD1 would effectively manage the trust and employ care etc for her sister but we wouldn’t expect her to do the hands on caring.
I’d love it (and dare say I hope) that DD1 would want to take her younger sister out for lunch and the odd holiday by the seaside but I wouldn’t expect her to give up on her career goals, relationships, family aspirations etc at the expense of caring for her sister.

We are not multi-millionaires by any stretch but we are very lucky that we should (🤞🏻) be able to support DD1 through university and give her some cash for a deposit but most of our money would go to DD2 (via the trust).
Of course anything left over would go back to DD1 as in this scenario DD2 wouldn’t have any children of her own.

Time will tell. But ultimately no, I absolutely don’t EXPECT one adult child to be providing care for their sibling at their own expense.

The issue here is not the siblings, it is the parents! The parents should not count on one or several of their children to provide care - of course they could do it voluntarily, but the parents need to have a backup plan that doesn’t involve them.

It is not his job as either!

The red flag is against the parents, not any of the siblings.

Yes, my DP's mum has always advocated to her kids that any of them can do anything they put their mind to. Which obviously led to DP being very career focused and he is doing really well in his field. His mum encouraged university and encouraged his move to start his career.

She has also done the same for the younger sibling who moved away.

Nothing like that for the eldest one though. She does encourage her to look for freelance work, though.

MIL isnt exactly old either - about another 10 years left before retirement. Her daughter will be 43 by then. Hard to start a career at that age.

I think you are making a lot of assumptions. You have no idea what conversations have happened between mum and daughter that led to this situation.

I don't think it is fair to judge when you clearly have no idea about the situation other than what you can see on the surface.

As much as parents like to claim there’s no expectations, what is in place then? Because a lot of the time there isn’t much you can do!

No I dont agree with children being carers for their siblings at the expense of their own life and career. I have one child with Autism. We made the choice not to have any more children as my son has high needs and it would have too much of on impact on another child's life. I don't know what will happen when we get older I hope he will be able to live independently.

As his partner, I'm surprised you don't know more about the underlying dynamics of the situation.

On the one hand (and probably the most likely) is that the sister has been groomed into this situation at the expense of her own wellbeing, and the mother, other sister and your DP are complicit in her exploitation.

On the other hand, it's not impossible that this has been carefully planned and fully and mutually agreed between the mother and sister. The role of carer to her brother may be an active choice for her that she finds rewarding and preferable to traditional employment, and her own future financial security may be already secured by her being the only beneficiary to the mother's estate.

Either way, your DP sounds like a complete knob I'm afraid. Even if the second scenario is in fact closer to reality than the first, the fact that your DP seems to feel very little responsiblity or guilt about the situation is very unattractive.

I absolutely do not want my younger child to have to care for her sibling.

We've even spoken about the future, when I'm no longer around, that she must live her own life. There might be things she can and wants to help with but it is not ever to be her responsibility.

I think your husband's parents are very wrong to deny his sister the chance to have her own career and independent life.

@PetiteBlondeDuBoulevardBrune I know it's not his job, it's the parents job I already said that. What I said is his lack of sympathy for his sister is a major red flag. According to OP this is his attitude.
"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."

For me that's a red flag. I would feel very sorry for my sibling, I wouldn't just assume they had no other choice in life but to be the carer.

Its a bit harsh to assume he has no sympathy for her based off a very small response.

He has showed empathy towards her when I have brought this up. He is always buying her gifts, and even arranged a weekend away for her (expenses paid etc) so she could get away for a bit.

In fact, he was the only family member to contribute to this holiday for her!

But in his mind she still doesn't get the choice to have a career.