Sibling care when parents are gone

[Scarecrowrowboat]

Not sure if this is the right board but here goes.
Those with moderately disabled (physical and learning) sibling that cannot function living alone but disability is probably not life limiting, what plans have you made with parents for when they are deceased or no longer able to care for them? They are retired and starting to worry about what will happen/ what plans can be made. Although there's a part of me that wants to say we'd just move straight in and take over care we have two young children, parents live a fair way away in a place with v limited job prospects so it would be a difficult move. I don't think they'd adapt well to a big city move so them moving into our v small house probably won't be great especially as we have stairs. I have no idea what suggestions to make. I know it could be years but no way to know what the situation will be when the time comes.

I am in this situation. This is going to sound really horrible but hear me out. I made it very clear to my parents and my sister's social worker that when the time comes, I will not take on a caring role. She will not live with me. Adult social services will and are involved. If she needs to go into a care home, so be it. And yes, I know that makes me sound like a truly awful human being.

But, my sister was very violent and aggressive towards me until I moved out of home at 21. She has had aggressive and violent outbursts around my dc. But only once. I decided that my dc were not going to experience what I had. They have v little contact with her.

The more social services think you will help and support, the less they will do. Think very, very carefully about what you commit your dc to in this situation.

If she needs to go into a care home, so be it. And yes, I know that makes me sound like a truly awful human being

I don't think you sound like an awful human being. You sound very realistic and sensible to me. These days adults usually get to choose if and how many children they have, siblings don't get that privilege. I would ensure a good and proper care facility was found, but I would not take a sibling into my home in your situation.

The best thing to do would be for your parents to plan for some sort of supported living for your sibling. Now, rather than later, so they can all settle in to it. Other than being a loving sibling first and foremost and a financial overseer second - assuming they do not have capacity to run their affairs - nothing should be expected of you. You have your own family to take care of.

@CagneyNYPD1

I am in this situation. This is going to sound really horrible but hear me out. I made it very clear to my parents and my sister's social worker that when the time comes, I will not take on a caring role. She will not live with me. Adult social services will and are involved. If she needs to go into a care home, so be it. And yes, I know that makes me sound like a truly awful human being.

But, my sister was very violent and aggressive towards me until I moved out of home at 21. She has had aggressive and violent outbursts around my dc. But only once. I decided that my dc were not going to experience what I had. They have v little contact with her.

The more social services think you will help and support, the less they will do. Think very, very carefully about what you commit your dc to in this situation.

That doesn't make you sound awful at all, it's understandable. It makes it harder that he's a lovely person and very much loved by my kids. I worry that some care homes don't treat residents very well and being so far away it would be hard to check ok him frequently.

@CagneyNYPD1

I am in this situation. This is going to sound really horrible but hear me out. I made it very clear to my parents and my sister's social worker that when the time comes, I will not take on a caring role. She will not live with me. Adult social services will and are involved. If she needs to go into a care home, so be it. And yes, I know that makes me sound like a truly awful human being.

But, my sister was very violent and aggressive towards me until I moved out of home at 21. She has had aggressive and violent outbursts around my dc. But only once. I decided that my dc were not going to experience what I had. They have v little contact with her.

The more social services think you will help and support, the less they will do. Think very, very carefully about what you commit your dc to in this situation.

I don't think you sound awful at all . You sound like you have had a terrible time of things and your sisters needs are possibly such that she needs professional care . Taking on a disabled sibling is a huge ask not just for you but your family aswell. No one should judge you for your decision .

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.

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.

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'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.

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.

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.

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.

@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.

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.

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

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.

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.

Thank you everyone, lots to think about. I had thought him getting to stay at home and keep his version of normality for as long as possible was the way to go but I can see that might cause more problems and make things harder down the line.

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.

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.

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.

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.

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.

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.