Sibling care when parents are gone

Family member has had their disabled child in supported housing paid for by benefits. They recently passed away and their money will be left to a trust run by a disability charity to provide additional financial support for the rest of their life.

They need to start looking for a long term place for your sibling now. Dealing with loosing parents and their home and being older is going to make it more difficult and traumatic.

I have 2 kids, 1 of whom is disabled. I absolutely do not want DS2 to feel pressured in any way to be a carer for his brother, DS1 is already asking to move out of home (he’s late teens) so we’ve already mentioned it to the social worker and will push a bit harder in the next couple of years.

My Aunt & Uncle had a similar situation and my cousin successfully moved into a Camphill community in her mid 30’s.

My niece has severe autism and will never be able to live independently. She has no siblings and my own children live in a separate country.
Her mother was mid 40s when she came a long and the father is not in the picture and has never taken in any responsibility in any sense. My sister has consequently started planning from very early years what will happen and has saved and saved to pay for her care. My other sister has told me she is leaving everything she has to the care of her niece too. There is no national health care where they live. My sister has had to take a very pragmatic approach.

I would suggest that your parents start looking at transitioning your sibling into a care/supported living environment long before it gets to this situation. Your parents could become frail/ill long before they die and in fact long term caring is highly likely to affect their health.

Not all care is in traditional style care homes ie the sort that old people generally go to. I know a number of young people who live within an organisation which buys ordinary houses in ordinary streets, adapts them and puts a team of carers in around the clock. There are anything from 4 - 8 adults living in these houses. These are often profoundly disabled adults. My nephew lives in a Camphill community house where the carers live as part of a 'family' with the adults but he is fairly able (has DS) but is very happy there.
I have a friend whose disabled sibling will end up in a crisis situation once her DM (late 80's) dies as no such arrangements have been made (DF already dead)
Putting someone into the care sector is often full of guilt but in many ways you are doing them a favour by making the transition long before crisis point. I say that as the DM of a profoundly disabled daughter for whom we were in the process of looking at making such a move although sadly she died before we got to that stage.

I have talked to my teenage children about what will happen to their younger brother when we die. I want them to look out for him but on no account would I expect them to do his care or have him live with them.

My dh works in adult social care and definitely feels that managed transitions before elderly parents are gone is what is usually best. Also in some situations the cared for adult is living a life more suited to elderly parents than that of a young adult, a supported living place can sometimes provide more appropriate activities.

Not quite the same as I'm one step removed, but I have an aunt with LD who is very happy in independent supported living. It's a small setting with live-in carers and two other adults with LD. The carers support her to do things for herself as much as possible, e.g. shopping, cooking, taking the bus. She'll never be able to do these things by herself but they do push her to have as much independence and responsibility as she can.

I agree with pp that the time to make arrangements and start the transition is now. Losing a parent and carer can be very frightening for a person with LD. Without going into too much detail, I have another relative with LD who took their own life when this happened. They just couldn't cope with the change.

If you stay a relative who can advocate for them, that's a more robust situation than trying to care for them at home.

Consider the case where you do care for them....If you, your kids or your DH get ill then that puts the vulnerable relative at risk if things just get stretched too much.

My auntie and learning difficulties. My grandparents supported her into supported lodgings. You do need to be careful with inheritance as it can stop them receiving benefits/support. My grandparents put my aunties inheritance into some kind of trust for their grandchildren, but my auntie got an annual amount from it. She lived a very happy and fulfilled life.

I know two families in that position and both planned ahead.
One elderly couple arranged a care home for their disabled DD when they became frail. She is happy there and, now the DPs have died, her DS visits regularly.
In the other family the sister of their disabled DD agreed to take her on and moved to a larger house when she knew her DM was getting frail. This family are also happy with their choice.
Everyone is different in what they can do and it also depends on the level/type of disability involved.

I would say staying at home for as long as possible would be the worst possible solution. My mum was ill for a good ten years before she died with stays in and out of,hospital. Each time my brother was really angry with her, because it disrupted his routine and was quite verbally agressive to her, for example not letting her sleep in the daytime. If you can try to prevent your parents going through that I would. They need peace in their old age.

Our neighbour is a young adult with autism. His parents made the decision to buy the house and rent rooms to friends, who also have disabilities. They live there successfully with support. There is a sibling who doesn't have a disability, they will be the trustee for the young adult when the parents pass away.

Not quite the same situation but my mum has dementia and my sister and I have carers going in, etc. I love my mum and want to do my best for her. My sister is now showing signs of developing it too. If that's the case, I'll take care of her at home for as long as I can. But I'm older than people on here so I wouldn't be juggling children and that makes a difference. I've been round a lot of homes in case we require one for mum, and most are not where I'd choose for a relative to live. It's very hard.

I absolutely would not (typo) feel the same responsibility to a sibling.

I have been a carer to my parents for nearly ten years. I don’t have a sibling with high level needs but what I will say is that whilst I did feel a responsibility to my parents in their years of need, I absolutely wouldn’t not feel the same responsibility to a sibling. Being a carer has in many ways torn our lives apart, but at least we know that their time is finite. With a sibling, I am sorry to say but more often than not you’d be making a life long commitment to that person. As a parent you make that lifelong commitment by having a child, but I don’t think it’s fair to impose that commitment on people who don’t feel able to meet it once you’re no longer able to fulfil your role.

Also, as above, being a carer and being a relative are entirely different. As a carer you spend your entire time doing things for people. You don’t have time to enjoy things together, everything feels like it has to have a place or a purpose.

So I totally echo what’s being said here. Find the right place for them to be able live their own life with people who understand. But he close enough so that you can enjoy time together as siblings. Break all expectations. You can always get more involved if something serious changes in future but until then, don’t lose sight of yourself and good luck.

I do the odd shift in a home for people with autism and aspergers. It is a happy place and the staff genuinely care about the residents. It is safe and staffed well and the guys are happy. I recommend care homes for adults who need a bit of support.

@freshcarnation I'm so sorry for you loss and the situation you and your brother is in. I hope for you both that he finds a brilliant place to live.

My mum died last week at home. She had dementia and was in her nineties. My brother who has autism and learning disabilities lives with her and she was 'his carer'. It is an absolute shit show.

Mum would never let my brother out of her sight and for decades we had a tug of war as I, and social services fought to get him some independence and she fought back to keep him at home with her. She insisted that 'family will take care of him' when she died (me). I said repeatedly and bluntly for decades that I wouldn't have him to live with me, ever, and that the best thing for him would be to find him suitable sheltered accommodation while he was still young enough to adapt.

So mum died with my brother still in the house and within hours of her death social services had to make emergency plans for his care. Mum was wheeled out in a body bag with my brother ranting about the noise and that it was disturbing his sleep. It was horrendous.

I am praying that he adapts to living in the accommodation that his brilliant social workers are sorting out for him.

Parents should be positive and encouraging for the disabled adult child to have supported accommodation when they reach adulthood.. the same as an ablebodied adult child would leave home. This allows them to form relationships outwith the family circle which in turn supports them when parents do eventually die.
It is really unfair to limit life experiences and opportunities, then expect them to cope when their immediate support system suddenly crashes.
Have the conversation with your parents/ sibling now when you all have time to make clear considered decisions. Much fairer all round.

Yes, supported independent living, rather than a care home, would seem most appropriate here. The young people I’ve worked with who have been able to move into their own ‘flats’ have absolutely loved it.

I'm in that position right now. Parent is now very elderly and for sometime has been sleepwalking into oblivion and social services have been making half hearted attempts to future plan but has been prevented by parent not wanting anything to change. It's been one disaster after the other for the last few years and I've had to step in and basically report parent as unable to cope. I'm trying to get a supported living place sorted before parent dies.

I've had to push and push and step into care whilst battling the situation.

The best thing your parents can do is make themselves as irrelevant as possible in their day to day care way before they are too old or no longer around. They can still be involved in their lives but they get to see them settled in the right environment and have the comfort that their child are well looked after. Make sure the will is set up to protect them and won't just be poured into care cost.

I agree. My experience was similar to PP including some violence. We had started the semi independent living process and I would have been involved only as someone to accompany him appointments, help out when necessary but otherwise it would have been down to social services. Sadly, he died before any of this could happen, but it was a plan we were all happy with, including him. I’ve watched my parents become absolute shadows of themselves under the caring responsibility that they had with very little help from social services or the absolute minimum.

I work with adults with profound disabilities. The kindest thing a family could do once they start becoming unable to care for their loved ones, is to move them into independent support living (ISL) or a care home so that can continue to have a relationship with them that's not based on just caring for them.

The impact a sudden death of their parents/career often means they have to go into a crisis bed, which could be anywhere where there is one available, and that has such an impact on their emotional and mental needs.

I am also a carer to a family member, and I didn't want a full caring role with her as I think it makes it hard to have a proper relationship with her. . She's in supported living and it is working so well for us both. She did have to go to a care home for elderly when her parent died, which was awful for her as she was only in her 40s and quite child like.

Where SS’s are involved you must say no to being her carer from the off, as pp said. If you don’t, they will let you do it all and more.
Perhaps it’s time for your parents to contact them now , while they’ve still got capacity, and get a plan made.