Disabled sibling/ dead parents

[Eggomobile]

I've nc for this as it's very outing...

What do you genuinely think you would do (not what you'd like to think you'd do) in the situation that a disabled sibling is left without either parent to care for them.

Siblings are all 30's/40's with their own families (except disabled sibling), all working and no one with a spare room. Disabled sibling cannot be left on their own, has a mental age of 8, and has epileptic fits most days.

Where is the sibl8ng now? In another sibling s home or in a respite centre?

She’s staying at my sisters, who used to live with her and my dad so knows how to care for her.

But my sister has had to move her 4 year old out of their room and in with her and her dad as they have no space

So that isn't fair... but they need to say now to ss it s temporary so ss can look for a goid supported living placement. These take time to set up and transition. E.g. have visits before moving in.
Get everyone round a table with ss.
But if you don't insist then this will become the status quo.
Actually adults can thrive in supported living with the right support even with low mental age.

Supported living would have to be our option. As much as I'd like to say I'd take in and care for them (as you asked us not to comment) but I have my own family to care for. This is going to sound harsh and dreadful but siblings are not other siblings responsibility whether the parents are alive or not

If you know the reality of caring 24 7 for an adult with a mental age of 8 or below and complex needs then I think you are more likely to suggest that taking in a sibling with those needs is not something to be done lightly. It s a huge undertaking. It means your life is no longer yours but based around that persons needs and fixed hours of respite. You can't pop out for milk without a plan in place.
And ultimately may not be the best for the adult.

I mean you can't leave disabled adult home alone. They may be happy on their iPad. It s raining you need some milk fr9m corner shop. So You have to drag them out with you . That kind of thing. You arrange to go out to cinema. Respite cancels. You have to cancel. A disabled adult with sl d complex needs requires same care as a toddler for life. And yet...they can actually thrive in good supported living.i don't think siblings should automatically be the default. I don't expect my dd's to be the carer. Friend and advocate yes. But not 24 7 carer.

Sure
It s just an example .
21 years of caring experience... the difference for me personally in terms of levels of stress / sleep / anxiety / health/ etc since having ds move into supported living is huge. And I would not expect a sibling to take on that caring role to an adult for what...10 20 30 40 years ???? and sign up to all the negatives. Without being fully aware. And considering other options.

Well no I wouldn't care full time live with for my own adult disabled sibling.
I know first hand what it implies.

But of course it is a personal decision

Its very rare for a sibling to take an adult disabled sibling with 24/7 care needs' care in permanently.

Its a normal life pattern to move out as an adult and most people aim for this for their family members, with appropriate support where they cannot live independently.

The best thing you can do as a devoted and loving sibling is to help your half sister adjust to moving into and settling in to her new home, and seeing it as a positive grown up step. Visit her, take her out, and between you siblings have her to stay regularly but especially at Christmas because her new housemates are likely to go home for Christmas.

Family care is rarely the best option because it's just too much for one person and causes huge stress and often financial hardships, sometimes breakdown of marriages and existing family units. Its very unlikely to be the best outcome for your half sister to move her in with you unless you are incredibly commited and wealthy enough to give up work without any sacrifices and still be able to afford to adapt your house and provide outings and enrichment and help her reach her potential...

*to take their care on, not in...

One individual carer can't generally provide what a professional team can, especially if they're not 100% commited and free of other responsibilities.

Name changed as we are facing this decision at the moment. Currently relative lives in a supported flat with social workers calling daily. Their parents and other relatives are also supporting them.

However we of the older generation are getting a lot frailer with age and relative can be quite difficult. Their sibling lives an hour away and, realistically, when we are dead or unable to help sibling would find it too much, having a family of their own.

Social workers are talking about moving them to somewhere with more support than they currently have because without family support they probably wouldn't cope in the flat alone. It is a real worry.

I think we know that they will have to go somewhere more residential but they don't want to think about it. They are autistic and also have learning difficulties. I'm reassured to read good stories about residential care on this thread.

zzzzz if you (generic) live in a culture where it's an expectation that adults move out of the parental home by their mid 20s then it's a normal life phase in your (generic) country. People with disabilities have the right to live in a similar way to others in their culture, but they also need the opportunity to take risks in order to widen their horizons and meet their full potential and live the most fulfilling life they can. People with disabilities who are kept at home often have reduced horizons and opportunities - loving parents can sometimes hold them back by not building up their confidence to try new things.

Parents who don't plan for their children with disabilities to move out into suitable supported living, and ease their transition, act out of live or sometimes duty but usually do their adult children no favours. As has happened with OP's step sister the person with disabilities is thrown into a horribly uncertain crisis situation when the caring parent dies especially if they die suddenly, or when they have a fall or a stroke and can't be a carer any more. The siblings are thrown into a stressful crisis situation riddled with guilt exactly when they are grieving for their parent, or trying to care for a parent who suddenly also needs care after a stroke or fall or onset of life changing or terminal illness, and so is the sibling with disabilities. Its head in the sand planning not to support an adult with disabilities in moving out to the best supported living home/ house/ facility for their needs while the parents are able to do it.

My BIL is disabled. MIL died many years ago and FIL has been his primary carer since. However, he has made arrangements for BIL in the event of his death. BIL is already happily settled in sheltered accommodation with an enhanced care element when / if it becomes required and FIL has money in trust to pay for it in perpetuity.

zzzzz children with disabilities were shut away in institutions in the bad old days because they were regarded as less than human and without potential.

Equipping and empowering people with disabilities to move into the world, with appropriate support in place, out of the parental home as they reach adulthood is the opposite.

When a person with disabilities has been kept in the parental home and encouraged to view moving out as frightening and not for them, what do you think happens when the parents die? Crisis and upset during bereavement, and bad decisions and trauma, are likely.

zzzzz do you mean do I not know any adults who live as dependents with their parents into their 30s and 40s and beyond?

No, not any more. One of DH's former school friends lived in a flat in his parents basement into his 30s. He had snake vivarioums (so?) on all the walls, his mum still did his washing and he'd never had a girlfriend for more than a couple of months. He finally moved out in his late 30s, I don't know why precisely.

Its not a model I'd want for my own children.

(so? Was meant to be sp? Meaning I can't spell viverium/ vivarium/ vivarioum...)