Overwhelmed with worries about the future - elderly parents and disabled sibling

[cherryblossomspring]

I would appreciate some support and advice from this board.

For some context, I am in my 30s. No DC yet but would like this to happen in the near future. I currently work remotely and used to live and work abroad for a short period in my 20s. My DP and I will most likely move abroad again because he works for an overseas company.

For the last few years, I’ve been supporting my parents (both late 60s) and my adult brother, who has severe autism and other disabilities. I live close to them and see them most days to support with my brother’s care needs and help my parents with daily things (cooking, cleaning from time to time etc.) It is becoming more and more regular.

Recently I’ve been worrying a lot about the future. I know at some point my parents will be unable to support my brother as they do now and it will fall to me. For example, in the last week I have spent a lot of time helping them with setting up a savings account, online banking logins, filling out forms for them, paperwork, things like that. My mum isn’t confident with tech and needs help to work her computer and iPad. She also asks me to fill in the forms about my sibling’s health/ disability benefits, send emails for her etc. I am often there whole days helping them with things.

My brother has 3 days of support at a specialist day centre and spends the rest of the week at home. He has poor mental health and often lashes out physically at my parents, shouts, self-harms, wrecks rooms in the house by throwing things etc. It can be very challenging. He is unable to live independently and everything is done for him by either me or my parents – managing his benefits, cooking, grocery shopping, personal care, managing his medication and ordering prescriptions… it is a full-time role and my mum is his named carer but lately, I feel she is struggling.

A few years ago, my parents applied for funding for a weekend of overnight respite care but my brother refused to go, so they lost the funding. In the future, the plan is for him to move into a supported living apartment run by the same organisation who manage his day centre. However, my parents are reluctant to explore this because they are understandably worried about his vulnerability and ability to cope when living apart from them. They don’t think the carers will be able to manage his conditions.

On top of this, my parents’ house is often very messy and they have a mild hoarding habit. I’m talking bags of clothes everywhere, a whole spare room full of junk and rooms full of items they don’t use. My mum has recently (with my help) started selling some of her old clothes on Vinted but it’s barely made any difference.

They are not very motivated to change things and have fallen into a rut of sitting on the sofa all day watching TV. My Dad is diabetic but doesn’t take care of himself – does no exercise, eats all the wrong things, doesn’t always attend his check-ups and I feel he’s sleepwalking towards a future of ill health. Nothing I say makes a difference. The house isn’t very clean and unless I hoover or clean the kitchen, it doesn’t get done. They have a lot of savings so I have offered to help them hire a cleaner but they don’t want any outside help.

My mum has told me that in the future she wants me to ‘look after’ my brother. I told her that I am not comfortable to live with him or take on any full-time caring needs, partly because we don’t always have the best relationship and he has physically assaulted me on several occasions. Also, I am getting married soon and want to focus on living my life. I will obviously make sure he is safe and happy and bring him treats, go on days out and help him with shopping. But I don’t feel able to provide the level of care my parents have for him.

When my parents are no longer alive, she wants me to invite my brother over to stay regularly, including every Christmas week. I feel this is an unreasonable expectation for her to place on me, bearing in mind I may have my own children to look after in the future. It is very difficult to manage my brother and all his challenging behaviours, anxieties and requirements. I’ve done that for many years and it depresses me that I may have to do it forever. That may sound selfish but I don’t mean it to be. I have given a lot of my own time to help him throughout my life and I feel like it’s taking a toll on me now.

I feel this awful mix of guilt and fear about the future. I can see them living in this chaotic way forever, my brother never getting any independence of his own and it will be very distressing for him if they make no plans for his future until they are physically incapable to care for him and he has to go into supported living care suddenly.

I also worry about how my mum will react when I move away again, especially as my dad isn’t very talkative and doesn’t often want to leave the house. She even interrupts my work sometimes to chat because she misses me when I’m not there.

My DP is understanding and tries to be supportive. He has offered to help organise things in my parents’ house but they don’t want anyone helping because they find the amount of mess embarrassing.

Does anyone have some advice on how to deal with all this? Or some strategies to cope? It’s starting to affect my mental health. I already have anxiety problems and the thought of the future is making me feel quite bleak. I feel like it’s all on my shoulders because there are no other siblings to support me.

Thank you if you have read this far.

IMO, contact social services and explain concisely your worries. They will give you good advice, may assess, may redirect you but they daily with things like this on a daily basis. Its just getting hold of the right staff
Good luck

BTW - does you sibling have a social worker if so, contact them

Oh god. What a stress for you. Is there any way to start getting your brother into supported care now, more than 3 days a week? At least then you’d know he was being cared for and settled. The rest of it - dirty house etc isn’t really your problem. You’ve offered to help and it isn’t wanted.

Oh OP, what a lot of stress. I'll say one thing that's helped me step back from trying to manage my DMs life - your parents are grown adults. They may lean on you and 'need' you, but they are (relatively young!) adults. They will cope and you need to live your life.
Your brother probably will need to go in to supported care at some point, and if it comes up in discussions, you talk to your parents as if this is exactly what you expect to happen, no question.

Your parents are late 60s but sound like they act much older (my DM is 69 and works full time still in care). Have they worked? Why would they need so much looking after right now?

The very best thing they could do for your Brother is find him a residential placement whilst they still have a choice about where he goes and they can see him settle in. If they choose not to do that then I suspect he will leave with them until a crisis happens and then SS will have to get involved.

I think you need to consider moving somewhere to break the dependency on both sides. I think you feel responsible for them and they believe you are responsible for them and I think that will continue to be the case unless you break out of it.

I was in your shoes. My mum would accept no help to look after my brother (who sounds very similar to yours) apart from ‘family’ I.e. me. As mum got older and older social services set up all sorts of help, carers etc and even a lovely assisted living flat for him and she cancelled everything because she persuaded him to stay with her. When she was in her late eighties she used to say ‘I’ll outlive him’ but this was not the case and when she died he was left abandoned at their home. I must say social services were very good and within a few months he was placed in a fantastic care home with friends for the first time ever. I see him about every six weeks and he certainly wouldn’t want to be away from his home for more than a couple of hours. He definitely wouldn’t want to come to my house now for Christmas. I did make it clear to mum that I would never look after him when she died and was very blunt with social services that I am a sister and not a carer. I think you need to stop doing things for them as you will become a mum to the whole family if you do.

Thanks for your advice. I agree I need to distance myself for the situation to improve.

@DistinguishedSocialCommentator My brother does have a social worker but they are not very involved. Also they keep changing so I don’t even know who it is now.

@Booksandflowers The day centre staff supported my parents to ask for 5 days a week but the council didn’t reply. It’s hard to get funding in my area. My parents also don’t follow it up because this setup suits them. My dad has to drive him to and from the centre on the 3 days he attends and he doesn’t enjoy doing it. 🙄

@OhshutupBarbara My dad worked until 60 and then took early retirement. He used to have a busy, senior job and so it’s sad to see the decline that has happened since he’s given up work. My mum worked until she had my brother and then gave up to care for him. They are much more capable than they let on.

@Graceandfavor Thanks for sharing your experience. It must have been very stressful for you. I really don’t want my brother to be in a crisis situation and have to leave his home in traumatic way. I want my parents to organise and settle him into care now. It doesn’t help that both of them threaten it as a punishment when his behaviour is bad (‘if you don’t stop, you’re going to live in care.’) They need to frame it as a positive thing. Also my brother is quite anti social and only cares about gaming. It’s hard for him to make friends because he simply has no interest in keeping up a friendship.

I agree with a PP, you need to step back a bit for everyone's sake. They are not going to change anything whilst they've got you stepping in and helping doing everything for them all the time. Social services are overstretched and whilst I'm sure they're aware that this situation is not in your brother's best interests, they won't do anything unless your parents push for it - which from what you've said, they won't. Your brother is an adult, your dad shouldn't have to ferry him around to the day centre. Transport can be provided - although cash strapped councils won't offer it.
You need to lay your cards on the table with your parents - you've got your own life to live and your brother won't cope if your parents die and he ends up in an emergency placement. Far better that he gets settled in his own 'home' now and then both you and your parents can enjoy visiting/occasional days out/inviting him over without all the day to day care which is clearly impacting on everyone's health.

FWIW, my own DD was both learning and physically disabled. There was absolutely never any expectation that her sibling would be in any way responsible for her care as we aged. In our case DD hasn't outlived us so that situation didn't arise anyway.

The sensible thing would be to step right back and to move away if possible. And I say this as someone who came close to losing my career and prospects of having my own family because I was getting sucked into caring!

The responsible thing for your PARENTS to do for your brother is to get him settled into alternative care whilst they still physically can. I've seen an acquaintance do this, but when her son turned 21. She was adamant she wasn't being his full time carer any longer. It isn't your role to be his carer and you are under no obligation to do so.

Sadly you might need to let them have a crisis and 'fail' before anything will change though!

Older people who struggle with IT can often access help in local libraries and help with forms from citizens advice, there's no need for it to be only you that does this.
You are going to have to be firm.

Hi. This is unfair on you. My husband and I have a very profoundly disabled adult daughter with multiple complex disabilities. We also have an adult son. It would be my worst nightmare to try and push the life we have had to live on him.
We've done everything we can to make sure her disability hasn't had any detrimental effect on him. He knows that if we die we would want him to find her a really lovely residential care home but we would never ever expect him to take on a caring role . He's very good with his sister and loves her to bits but I just would never put this on him.
Your mom is being selfish sorry and I think that while you are enabling them by taking on the responsibilities , they will keep increasing your responsibilities. I would have a difficult convo with them and live your own life to its fullest

Unfortunately my brother wouldn’t be able to travel alone to the day centre. He is highly vulnerable and needs 1:1 care in the community (and thats from a social worker assessment, not me just saying it.)

My mum took an IT basic skills course during lockdown which was run by the local adult education centre. She used to ask me for help a lot and she managed to complete all the units but then sadly refused to attend the final exam because she didn’t have the confidence. It’s a shame because she never got her certificate and she doesn’t want to try again.

I am really not sure how to approach the conversation about my brother’s care with my parents. If I say anything, I am either met with a cold silence or they assume I am trying to ‘get rid of him’ for malicious reasons because I don’t have his best interests in mind. When actually, the opposite is true. They have a strong belief he’s better off at home but he needs some independence. Sometimes I think he lashes out at them because he feels stifled and babied.

Putting it bluntly but I think the sooner you can move away the better.

This is very tough on you . We have a severely disabled son who is now residential and it means we can have him home on our terms whenever and we do ... often. It's been the making of him having two sets of people to be around . I would t expect his brother to do all the care when we pass away . There are specialist residential places for behavioural problems with staff who understand and are well trained. It may be at a distance from where you live . I became very very low with the 24/7 care on my shoulders .. you don't have to take this on . We call our arrangement'shared care' .Maybe you could look at a few places and do some homework and slowly slowly move this forwards. We found social care no help at all and literally had to paddle our own canoe to sort out funding / placement/ staff training .. unbelievably really but worth is as then the whole situation becomes manageable in the longer term .

In my experience it’s going to be down to your parents to make the decision about your brother. I was emailing and ringing social services every day towards the end of mum’s life but nothing happened until it hit crisis point. My mum and brother were I happy to live together, and social services said it was nothing to do with me.

I would advise you withdraw and get on with your own life. Your brother is known to social services but until your parents make the decision to ask for help and really mean to see it through, nothing will happen.

Just want to give you support. You have the world on your shoulders.

You cannot put your and your DP's life on hold for your family when they won't move an inch to reduce the burden on you and are in fact heaping it on.

It is ok to find that 'opportunity of a lifetime' job abroad and leave this mess behind for now. Time might sort things out and your brother ends up in a residential home. In any case, things won't get better with your parents getting older so better that you and DP enjoy your freedom while you can.

I feel it is unfair to impose carer responsibilities on anyone if there is money for people to go into a decent care home. I plan to do that and not be a burden on my family. Your brother can easily just stay in his room all day and game and it won't be very different from home.

I’ve seen this happen before. The parents feel they must care for their child but it’s actually really detrimental and doesn’t allow the child any chance to develop an independent life. In the end no one is happy.

You need to draw a line. You have to live your own life and step away.

I work in adult social care with people with complex disabilities, including autism. Part of my job is to help with moving out of parents and carers homes, and into independent supported living (ISL). The kindest thing your parents can do is to help him move to a new place and still have a relationship with your brother while they still can. I've seen how traumatic it can be when a parent dies and the person with disabilities then has to not only deal with grief, but also leaving their safe space, sometimes the same day. It's a lot to process and can be hard on their mental health.

Speak to his key worker at his day centre about it, and gather as much info you can to show your parents what he can have. The biggest thing is for them not to feel guilty or that they've failed him in any way. He will be looked after by people who want to help.

I really feel for you in this situation. My advice is to try as hard as you can to persuade your parents that it is time for you brother to move into supported accommodation. If this doesn't happen, things will only get harder for them all and for you, and at some point will tip into crisis.

My younger son (22) is autistic with severe learning disability and will need 1:1 care for his whole life. From an early age we made it clear to anyone who would listen that he would need to move out when he became an adult. He moved into supported living when he was 19 and it was the best decision for all of us, despite teething issues with the placement (it was during the pandemic, the planning wasn't great). Three years in, he's settled and happy, the care provider is great, we have our lives back and enjoy taking him out for trips every week. It takes time and effort, but it does work.

This is going to sound harsh. Your parents think they are doing their best for your brother, but they are actually being selfish. You probably already know this, which doesn't make it any easier to find a solution I know.

Some great advice on here already OP.

I am one generation down from this as my Mum’s sister had complex learning difficulties including autism. I now have caring responsibilities with young family.

I would ignore everything aside from getting your brother into residential care, would your fiancé be willing to come as back up during the conversation? As so many people have said you don’t want to be in the situation of something happening and him losing a parent and a home in one fell swoop. When my Aunt moved to residential (much resisted and put off by my Nana) she was able to still have that relationship with her Mum until my Nana had a very sudden stroke. She was still very upset when my Nana eventually died but she still had her home in supported living so could process the grief. Don’t make any promises about care and week holidays for Christmas etc. we had my Aunt for Christmas for years and she just didn’t enjoy it, was for us not for her.

Lastly, do you have any availability to have therapy via your job or partners job? You can quite often get a short term run of sessions via employment assistance programs, and I’ve personally found it really helpful. I didn’t realise how much impact my Mum growing up with my Aunt had had on me and how my Mum parented and which all came out when I was stepping into that caring role.

You are not selfish at all for needing to live your own life but equally I’m sure you love your family and want to help at the same time - within limits. Do not give up anything in your own life for your wider family. You matter. Figuring out what your feelings are, and what your boundaries are can only help in having those hard conversations with and a therapist could help with that. I know it’s some people’s idea of a worst nightmare but I have found it really valuable.

When my parents are no longer alive, she wants me to invite my brother over to stay regularly, including every Christmas week. I feel this is an unreasonable expectation for her to place on me

It certainly is. But to put it bluntly, she won’t be here. She has no power over you, OP. You don’t have to do it. You are a grown adult with control over your own life. You need to let go of the guilt, if possible.

60s is no age at all. They have no excuse really for sitting watching tv all day while you clean their house.

I really think you should move abroad. Settle with DH and have your kids abroad. It is noones responsibility to look after their disabled siblings, especially if you are on the receiving end of violence.

Please put yourself first. You only get one life.

Thanks for all your advice.

I think therapy could help me. I’ve never had it before because there was a long NHS waiting list when the GP offered it a few years ago due to my anxiety disorder. But it could be worth exploring further. I am a bit of a people pleaser and I’m sure this is due to things that happened when I was growing up.

I don’t think my fiancé would feel comfortable being involved in this because he feels he’d be overstepping. My parents are very closed off, isolated people and don’t deal well with what they view as outside interference.

I have continued to talk about residential care for my brother but sometimes it feels like talking to a wall with my parents. I get nothing from them. Not sure what else I can do but maybe they will change when I move away and they have to do things for themselves.

I really feel for you, OP. I wonder if, growing up, you were the ‘glass child’ ?

Your parents and brother sound enmeshed and it appears that your parents are not facing their own mortality and not taking steps to enable your brother to live his own life, whatever is possible for him. Instead your mum is simply expecting you to take on her full time carer role.

This is SO not fair - wrong, in fact. But with your parents as they are, it will be very hard for you emotionally to maintain appropriate boundaries to your involvement.

My guess is it will be easier to make boundaries if you move abroad and, hopefully, start your own family.

You have a right to your own life, and to pursue your own happiness.