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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be worried about sibling with disabilities care

23 replies

Sandyjane121111 · 23/08/2021 01:26

Hello.
Random late night worries here.

I have 2 sisters age 11 and 12. The 12 year old has both a physical disability and autism and a speech impairment.
She uses a wheelchair, has to wear nappies (we call them nickers at home though - not sure the actual name for them is) but she is "of her age" if that makes sense? Don't get me wrong, she acts a lot younger than 12 but she is totally capable of having a conversation with people and expressing what she wants (however many struggle to understand her speech until they get to know her).

She is absolutely gorgeous and I absolutely love spending time with her.
I currently live at home at 26 as I've been saving for a deposit but me and my boyfriend are hoping to move out together by the end of the year.

However this has set off a massive anxiety in me.
My parents are in their early 50s but I've suddenly had the thought of death, in terms of what happens after they die.

My boyfriend and I of course plan to have children. And originally when she was born and I was 17-18, I was determined that I'd want to take care of her when they pass. However I've got older, I've thought more about the practicalities and the fact my boyfriend (as much as he loves her aswell) probably wouldn't want to have the stress of her needing constant care.

I wouldn't expect that pressure on my other sister either as I want her to reach her dreams.

Touch wood: my parents are showing no signs of leaving us soon. But I was just going through some old photos and seeing her so happy and I just had this unbelievable sense of dread for no apparent reason.

I want her to always be happy and I never want her to feel abandoned.
Parents own the house and this house has been done up for her i.e. a lift and extension.
But I just don't know what happens after they pass. It's really stressed me out tonight and I don't know why Blush

OP posts:
Original poster
Sandyjane121111 · 23/08/2021 01:27

Sorry for any spelling/grammar areas, I rushed typing this on my phone whilst laying bed

OP posts:
Original poster
Sandyjane121111 · 23/08/2021 01:28

Noticed an error there. In case of misunderstanding, she wasn't born when I was 17 but when I was 17-18 I had this idea that I would happily care for her when they pass

OP posts:
SpindleWhorl · 23/08/2021 01:35

You're raising an incredibly important question, tbh, that's going to affect millions of people one way or another over the next generation.

Institutional care is drying up, as are budgets to fund it and to fund care packages. The government relies on family members (usually female) to do it all on the cheap.

I'd get your understanding of your sister's care package up to speed, and keep up to speed, and don't let it lapse when she becomes an adult. In fact, maximise it while you can.

romdowa · 23/08/2021 01:38

It's up to your parents to put supports in place for her as they get older/ pass away. I'd suggest sitting down with them and asking them what Is their long term plan for your sister.

ilovesooty · 23/08/2021 01:41

It is a worry and I'm not surprised you're thinking about it. I agree that perhaps a conversation with your parents would be a good idea.

Original poster
Sandyjane121111 · 23/08/2021 01:42

I have tried talking about it with my parents but they're very "go with the flow" people and they feel they don't "need" to think about it yet and more so when she's 18

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Original poster
Sandyjane121111 · 23/08/2021 01:45

We're not the most well off family either. Typical "working-class"

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Original poster
Sandyjane121111 · 23/08/2021 01:45

Mum had to give up her career to care for her

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Original poster
Sandyjane121111 · 23/08/2021 01:48

And I've played a big part in her upbringing aswell. I can tell my sister absolutely adores me as much as I adore her, she even refers to me as "My Sandy". I don't know why this makes me feel so emotional; I think it's because I know that when it comes to it, I probably won't have the ability to take her in like I thought I would as a naive 17 year old

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SionnachRua · 23/08/2021 01:51

50s is young but it'd be best for your parents to have a plan in place, they could die tomorrow (as I could I or you, that's not a judgement on their age) - the next day is never guaranteed. And you should not feel that you have to take care of your sister, it would hugely change the course of your life. I'd ask them about the long term plan for your sister - make it clear that you aren't the solution if you don't want to be - and they might start to think it over more seriously. I think if you come at it from a serious angle then they might respond in kind.

Driftingblue · 23/08/2021 01:52

Your parents really should have a backup care plan in place. Many parents can stick their heads in he sand and get away with not making arrangements for their early deaths slide knowing that their families will end up figuring out who is best able to care for the kids at the time and it will all work out. Your parents don’t really have that luxury.

They should have a will with a designated guardian and financial arrangements

They really should already be thinking about what kind of support she will need in adulthood and that includes after they are gone. Will she be able to live independently with care? Will she be able to work? Will she need to be in supported accommodation? Those plans don’t have to be concrete because conditions change, but you aren’t wrong that this is something to take very seriously.

romdowa · 23/08/2021 01:53

If your parents won't discuss it then there is very little you can do. If your sister needs support in the future then you can support her in getting that support but you are under no obligation to take her in. You have mentioned that her intellect isn't affected , so she maybe able to live independently with the assistance of carers. A member of my dp family has cp and is I a wheelchair fulltime and lives alone with carers coming in to wash / dress everyday. So it might not even come to it that you would have to take responsibility for her.

Original poster
Sandyjane121111 · 23/08/2021 01:55

I can't imagine she'd ever be able to work or live independently. She can't walk, she can't use a toilet independently, needs help getting in and out of bed, she has no balance, and she's very vulnerable in the sense she will forever be quite child-like in personality;
I wish I could do more.

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Original poster
Sandyjane121111 · 23/08/2021 01:57

@romdowa her intellect isn't affected in terms of she can have conversations with people and she is very present in the conversation but she has been assessed as being more at KS1 level in terms of intellect and personality

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Original poster
Sandyjane121111 · 23/08/2021 01:57

Sorry if that makes no sense

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Original poster
Sandyjane121111 · 23/08/2021 01:59

If my parents own the house and the house has been done up to cater for her disability then perhaps she could stay living there with carers coming in to visit;
Would I have to fund the carers though?

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SpindleWhorl · 23/08/2021 02:09

Have you seen your sister's EHCP? How much support does she have from the Local Authority currently? Schooling?

It'll rest on how dependent she is.

She'll likely get PIP as an adult and other disability elements for living costs, but they probably won't cover everything. It honestly depends.

Original poster
Sandyjane121111 · 23/08/2021 02:12

She is in a SEN high school; LA were the ones who sorted the adjustments to the house; she has physio, occupational therapist, Speech and language therapist and a one-to-one in school

OP posts:
SpindleWhorl · 23/08/2021 02:15

OK, so that sounds like quite a comprehensive 'package' already, and the LA can't just remove it.

Original poster
Sandyjane121111 · 23/08/2021 02:21

@SpindleWhorl yes I think that's why I have more anxiety because I know a lot of support is needed for her; I'm hoping within 10 years she will become more independent with toileting; and therefore with the house being already adjusted for her that she can live in the house with the support of carers.
Who knows what she will be like in 10 years in her 20s

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Original poster
Sandyjane121111 · 23/08/2021 02:23

And of course I would do consistent visits and she could stay at mine once or twice a week or whatever.
I'm probably massively overthinking this and overplanning but it's one of those nights tonight where my brain is everywhere Grin

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Nat6999 · 23/08/2021 03:04

My nephew is similar, he is 14 with severe autism, ADHD & physical problems, he is a twin & I worry what will happen to him when my brother & his wife die. My neice has such hopes for her future, she is a very talented actress & musician, has ambitions to turn professional in either or both. I feel sorry that one day she may have to give up her life to care for him as he isn't capable of living alone. I feel sad that he will most likely never get married or have a family of his own.

RhodesianRidgeback · 23/08/2021 06:44

I have an autistic sibling with physical disabilities as well, although not as badly affected as your sister.

I’ve had to be very firm about my boundaries in terms of how much I can do to support them, and when I need to put myself and my kids first.

For us that means - I have moved closer so I can step in as my parents age. I will help them navigate the medical/care system and get access to the support they’re entitled to. I will spend time with them, I will be a supportive voice on the end of a phone. But I won’t actually have them to live in my house, and I won’t take on responsibility for physical care.

You need to set your own boundaries, depending on what you feel you can manage/want to do.

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