Being my brother’s carer has ruined my life

[SimpsonWave]

I just need to rant I suppose. I’m 27, my brother is 29, he has autism and his mental age is around 8 or 9 years old. Our parents had us older, in their 40s, and we lost both of them to cancer in 2016 and 2021 respectively.

When I was 18 and my parents were still well I did a gap year working abroad in Canada and fell in love with the place. I wanted to make a long-term plan to emigrate after university, but then I remembered my brother and that I couldn’t just leave him.

I’m now a qualified healthcare professional, I’ve never managed to buy, but I rent and my brother lives with me since 2021. I don’t earn enough for decent supported accommodation for him and I don’t want to either, I’d feel absolutely awful. My job is also working full-time with people like my brother, so I feel like I’m the best person to care for him. I am lucky in the sense that whilst he is mentally immature for his age, he washes, toilets and dresses himself and isn’t violent, so I am grateful for that and I know other carers have it harder. But I feel like my life revolves around him - the few months after mum died were absolutely horrific because mum was his absolute everything. It was so traumatic watching him trying to cope with that. I didn’t get chance to grieve either of my parents.

I live in the same area I grew up in, and other than that year in Canada, I’ve never really been anywhere or done anything. I have never had a relationship, I had short flings when I was younger but they never went anywhere. Since being my brother’s carer, I’ve tried dating but they all run a mile when they see I live with my brother and care for him, with no prospect of this ever changing. I don’t blame them. All I do is work and then in the evening drive my brother out to areas involving his special interests (at the moment it’s a canal a few towns over, every single fucking day) or he wouldn’t go out at all. He literally doesn’t speak to anybody other than me, he can’t. We don’t really have any other family in the UK, it’s just me and my brother.

I see women my age with partners and kids and makes me so depressed. A friend who I qualified with has recently told me she’s emigrating to Canada next year, as she will earn 3x there what she earns in the UK. She already has a rental and visa arranged in the city. It’s not one of Canada’s expensive cities, but I spent some time there myself and the quality of life is generally very nice, you’re able to get a big home for much cheaper than in the UK and you have mountains on your doorstep. Her partner is going with her, she is able to sponsor him or something I believe and they plan to settle and have kids there in a couple of years.

That would’ve been exactly my plan for my life had I not got my brother to worry about. I’ve checked several times if there’s anyway I could go on a working visa and bring my brother along but it just isn’t possible as he’ll never work. I completely understand it from Canada’s perspective as to why they wouldn’t want an immigrant who will never contribute and will cost them resources, I really do understand. It just makes me so sad and upset because if it wasn’t for my brother I could go and live that life and probably meet somebody and have a family. I wish they could at least let me bring him on the condition that he isn’t entitled to any benefits and that it would be up to me to support him. I could cope with that.

I know somebody will say “You’re life with your brother would be the same even if you did both go.” I’m well aware my situation as his carer wouldn’t change and that it’d be a massive adjustment for him. But he would settle eventually and at least I’d still have been able to do my life’s dream, just with him beside me. We’d be able to rent a house with a garden (rather than a pokey flat) in that particular city, and there’s so much beauty around there that I could take him to which would really enrich his life. We also have an auntie (on my mum’s side, she emigrated in the 90s) and cousins in a Canada-bordering US state who I keep in touch with, and we’d be just that bit closer to her to perhaps make connections with for things like Christmas etc. But it’s not going to happen.

If it weren’t for my brother, I’d be in a perfect situation to emigrate to Canada. Young, single, with a skilled medical profession. But I am tethered here with my brother. I feel really bitter and I hate myself for it because my brother is so lovely really.

I know I need to give up on Canada, because I’d have to dump my brother in supported accommodation and then fuck off leaving him with nobody and I’d kill myself before I ever did that. But I do want us to have a better life. I am thinking perhaps we could look at moving within the UK to somewhere it’d be fulfilling for me to live in. We’re currently in a drab, rough city in the Midlands and I really am so beyond sick of it. I do wonder if moving to the coast or somewhere beautiful like Buxton/The Lakes would be more fulfilling for me and my brother, or will my life be shit wherever we are? One plus is that my job is the type of job I can get anywhere as I can work in schools, hospitals, in the community.

You know ,on don't have to do this don't you?
I have a severely autistic non verbal 13 year old son and a 16 year.old MR son I had made absolutely clear i.do not expect my oldest son to feel.responsible for his brother when I'm knowing here ,he had his own life
I hope he would visit him and keep an eye on him as any brother would but that's it .

FORCEFUL

No this isn't possible, I know how the OP feels and that makes it not possible.

OP, sorry not to have any decent advice, I just wanted to say that you are an incredible person. What you're doing is exceptional.

I’m so sorry you’re going through this OP but don’t think your brother won’t adapt to another way of life or having another carer(s) in his life. If for any reason you can’t be in his life anymore, the state will take care of his needs and he’ll adapt to supported living really. That’s how you need to look at it and not let him be the reason why you won’t seek your own personal fulfilment. Also, I’ve heard that ss, etc never want to offer help easily so you’ll have to fight for it

I have worked as a carer in supported accommodation (a nice one) but do not have family experience of autism. If I were in your shoes I'd go to Canada. Sorry, it is tough on your brother but alternatively its tough on you and, sadly but candidly, you have more potential. That's fucking harsh but someone has to say it. Go. Doesn't have to be forever (or maybe it will be). But he's your brother not your child.

Spend the next 12 months finding and getting him settled into some form of assisted living, then go. Live.

I’m so sorry about your situation. I do understand your feelings regarding ‘abandoning’ your brother, but please think about the future . My SIL has devoted her life to her autistic son, and now her and her husband have reached an age where they are worrying about his future. He’s been so mollycoddled at home that they can’t imagine what will happen to him when they can no longer cope or die. He’s in his mid 30s and can do very little for himself. It would have been much better if he had become used to supported living much earlier.

I think if it were me, I'd definitely look at accommodation for him purely because you also potentially won't be around forever. One of my neighbours recently was in a situation where his parents died, he was just in his home until someone he got placed in accomodation elsewhere in his 40s. I'd invest in finding a great place to live without you then look at where my own life took me. It doesnt need to be Canada as you've only been there once, but there are options for you in between

Could be live in supported accommodation where you work full time? Might that be a solution to work towards?

Hi op, I don't have any advice but I do have a positive perspective as my husbands brother is "severely" autistic and has profound learning disabilities, he has the mental age of a 4 year old. I don't like the way any of that sounds but it's how the doctors describe my DBILs conditions. He lives with us and our now 10 year old son, I knew from the start that DH and DBIL were a package deal (as he put it) and we are all one happy family. It can happen, not everyone is an arsehole, I promise.

Everything here.
You have your own life to lead. I really feel for you OP. But you will end up resenting your brother if you continue living with him .
You have to be selfish.
What would have happened to him if you had already married / moved abroad before your parents passed away?

I agree with PP that I will have to get the balance right in moving away, getting somewhere with decent provision for my brother but also somewhere I will be happy. I'm in a horrible concrete jungle part of the Midlands and it's all just ugh and horrible.

I think somewhere with greenery, and places for me to walk and cycle would make all the difference to my mental health - I'd be out more and meeting people. If DB was in supported housing nearby I could perhaps take him out on weekends somewhere nice.

Your parents must have been in their late 60's/70's by the time they died and it was completely remiss of them not to have got something sorted out for your brother - even from the age of 18 it should have been done for him (and you). It makes me really angry on your behalf that because they did nothing this has all fallen on your young shoulders - and you are now watching your dreams slip through your fingers. It makes me particularly angry because my MIL and FIL also did nothing in a very similar situation.

You now need to think in ways that they didn't - what if you got knocked down and killed tomorrow? What if you got seriously ill and had to spend a long time in hospital? It will be so much harder for your brother to cope if he has to move into supported accommodation due to an emergency rather than it being done calmly and with lots of preparation. In fact it could be absolutely devastating for him.

Don't wait until your 30 and put it off and put it off like your parents did. Don't wait for an emergency to force your hand. Start now. Get your brother a life, (of course it will be tricky for him at first and of course due to his autism he will be very resistant to change - but you need to look at the long term picture) - then get yourself a life.

Have a bloody fantastic life OP filled with travel and love and anything else you crave, you've have stepped up and done so much - now it's your turn.

OP, I don’t have any advice. I just want to acknowledge how difficult it sounds for you. I can see you really love your brother but I think it’s too much to expect of you to sacrifice your own life. Though I don’t know what alternative there is that you’d be happy with. I

look after my DS with ASD. He’s 23 and more like a 12/13 year old. Too able to be eligible for any help but not able enough to cope on his own. I’m divorced, exH fucked off with OW partly to escape from the responsibility. So I hear you. It’s shit. I

have 2 other DC, I’ve encouraged them to move away from home and live their own lives. I’m not expecting them to look after their DB except maybe keep an eye out for him once I’ve gone. I’m trying to coach him in living skills, it’s a long, slow process and I do worry.

I understand you mean well with that suggestion, and it has crossed my mind before, but it wouldn't be fair on the other people I'd be working with and it would also inhibit my brother's social skills even more.

I'm so sorry OP, it's an impossible situation to be in. It is so difficult to be the sibling of a high needs individual.

It is imperative however that you move your brother's support network away from you. I don't mean cutting all ties, but he needs more support than you can reasonably give and he needs continuity of care; as you are very much aware, life is unpredictable and you have to consider what would happen to your brother if something happened to you. And then make the changes now, while you're around, so that it's less distressing for him.

You also have to ask what you want more: a family, or to be your brother's carer. Because sadly you cannot have both. I am sorry if that comes across as blunt, but it is the truth.

You cannot set yourself on fire to keep someone else warm. Look after yourself.

I’m a carer for my son. There is a happy middle ground between emigrating and leaving him alone and continuing with life unchanged. If I were you I’d

• consider where in the U.K. you might like to live and has good provision. What about Wales if you like hills/mountains?

• Make a medium term plan for your brother to access other services during the day e.g autism social groups, clubs, going to special interests with a support worker. Getting a carers assessment (look up the carers charity closest to you for help with this) and being honest about what you need is crucial first step.

• Start taking seriously your need to meet people. Its of benefit to your brother that you have a happy fulfilled life, not just him. It’s always a numbers game but there are good men out there who would be positive about having your brother in the family. Some may even have their own siblings with care needs. Don’t write yourself off!

For those saying the parents should have made arrangements before their (untimely) deaths, what does that even mean?

I have a severely learning disabled sibling who needs 24/7 supervision. Developmentally he's not ready to leave home yet, though he does have a long term girlfriend who my family support him to see and he enjoys the fortnightly respite that Adult Services finally put in place after my Dad got sick and was incapacitated for a while. So my parents are working on his independence, they're doing their best.

But if they died tomorrow I would still have to work with Adult Services to sort something out from scratch. Adult Services don't agree provisional care packages to be implemented in the event of parental death, you can't future proof social care like that, that's not how it works.

I suppose they could state in their will what they would like to happen, but he's not a possession to be bequeathed. A request in a will won't suddenly magic up a suitable home or carers for him.

If they were rich they could buy him a house and leave money in trust to pay for carers. But they're not rich, not many carers are, they've spent the past 30 years living on one income for christ sake.

So I understand the principle of people saying they should have 'made arrangements' but as someone who has grown up in a complex family like this, I still don't really understand what that means in practice?

Clearly you cannot/do not want to live without your brother. So because you are in the right professions can you inquire about good accomodations for cases like your brothers in England with nice nature surrounding it, you move him there, you live few miles away, visit when you find suitable and start dating there ASAP

OP, you might want to have a look at https://www.sibs.org.uk/, to find others in a similar situation, and for support and advice.

I know it’s not the same but I was a young mum to a son ( now young adult ) a lot like your son . Just like you I got myself a good career and pretty much assumed I would never find real love or live a more comfortable life .
Well I did find love , I had to wait until my 30s to find a men who saw my son as part of our life and still loved me unconditionally , I went on to have 2 more kids and moving to the place I wanted to move for over a decade .
It came with big sacrifices , I should be at the top of my profession as I’m more than capable and I will never be , simply because it would mean leaving my child to travel and work 60 hour weeks.
You are an amazing person and someone will see just how amazing one day and the love you feel for your brother will be part of why they love you .
As for Canada ( having lived straight out of college ) it’s so overrated . I know it was your dream but dreams change and adapt , there os nothing that prevents you from finding a nicer area , you are young and a professional and although change is hard on autistic people it can be good and beneficial too .
Hugs

You really need to get him into supported living. An isolated life for him is not ok. This is not ok for either of you.

I just want to say it's great you're recognising your wants now and not shying away from them. You're still in your twenties and so much can change in so little time.

You sound like a wonderful person. In your situation I would find it hard not to resent my parents. They had years to sort something out for your brother and yet have left you alone to deal with everything.
Now it’s your responsibility to put some support in place - what if you died tomorrow? Your brother needs some additional support in case anything happens to you.
Moving to a nicer area may help a little in the short term, but it doesn’t solve the fundamental issue of allowing you to live your own life and helping your brother to live his. I know (personal and work experience) that it can be really hard to find the right supported living environment, but they do exist. Good luck with everything.

I think moving somewhere else in the UK is a good start, maybe trying to find somewhere where there is a community, green space, that is safe etc. and has good provision for you brother so you can get out, go to groups, maybe meet some friends and other general support first and start building your life and confidence in that way first.

Re. meeting a partner, you are also still so young, and I think people you would meet at that age (assuming they are a similar age) are probably not going to be in the mindset of wanting to look after someone else - I also think that lots of people at 27 who aren't in your position have also not met life partners for a myriad of reasons. I think as you get older and people mature, think about settling down etc., you are more likely to meet someone who wouldn't see the life you have as a burden but realise what an absolutely fantastic and caring and selfless person you are and that would trump that, plus your brother sounds lovely and as you said has a basic level of care for himself.

And op o left a concrete jungle in the midlands to Scotland 6 years ago , now live surrounded by green and water and the provision for adult autistic people up here is so much better . My son still lives with me but he was offered amazing opportunities including living arrangements and part time living arrangements. Our quality of life is much better too away from a concrete jungle . Obviously I know it’s not for everyone but sometimes the answer is not as far as we think