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.

Have you looked at the Camphill Communities? You can both live there, and you can see how your brother settles there. You'd have more opportunity to have new life experiences.

It's not Canada, but there are beautiful areas with potential for friendship and support

http://www.camphill.org.uk/

@SimpsonWave are you not in the UK? If you are in the UK your income will not be relevant to your DBs care. I have HFA and I think this situation is unfair to both you and DB. Whatever his level of functioning he has a right to have social/living input appropriate to his wider life outcomes. With all respect, these will not be met in a home where he is resented. I know you love him and will not be unkind to him, but the resentment is there and that is not good for either of you. I would advise you to contact Social services and push for a needs assessment, make your feelings very clear. You have the right to your own life and ambitions and a caring, but sibling relationship with your brother. I would also recommend speaking to a solicitor to have a trust for a disabled person set up for your brother, with relation to any shared parental assets.

It's been suggested above by someone else but I'll repeat it - you aren't the best, most-qualified support system for him. You need to step back, for his sake, as well as your own.

Do you struggle with change of routine and flexibility yourself? Carers of family members with autism are often high-functioning...

Places like Buxton are lovely, but if you want to meet someone, you'll get a better possible pool of friendships and people to meet if you're within commuting distance of both a large urban centre and mountains - like Stockport or the edge of Sheffield.

Its so wrong that your parents didn't make provision for your brother before they died, its totally unfair that they have left the caring to you.

With all emotion out of it, its your life and you only get one, believe me that bugger moves fast. Its not and never should have been your responsibility to provide life long care for your brother. Personally I wouldn't and would leave and follow my dreams.

@SimpsonWave did your parents use respite care or residential for your brother? Could you perhaps have absorbed their attitude (if they didn't engage with services for him) that he should only be cared for at home? Read @Somethingintheattic and @TheKeatingFive posts again because there is a lot of wisdom in their suggestions. I hope you turn things around in a way that both you and your DB are happy, you are a very good person.

Absolutely this.

You are a wonderful generous person but your brother needs to move to supported accommodation.

You have a life to be lived.

Sooner rather than later.

This a thousand times.

OP you need to get him living independently not just because you deserve your freedom. But because something could happen to you too!

From experience (I'd rather not elaborate) my advice would be to look into supported living for your brother sooner rather than later. If anything happened to you he'd lose his whole world, again. You sound like an amazing sister, you've already gone above and beyond but you need a life too, as does your brother. The correct placement in supported living couple be absolutely life changing for you both, very much for the better.

Please consider looking into it. You're doing a great job but you deserve some help and some freedom to date, to experience life and to have fun! Your brother will very likely flourish in supported living, I've seen it happen myself. There'd be no place for guilt, you'd see for yourself how much happier you could both be. Why don't you try asking adult services about it? You can explore the options with no obligation to follow through if it's not what you want in the end. These things take a lot of time anyway, there'd be no rush and no pressure.

I'm pushing 50 and have lost one parent. I am sure you have had with your losses at such a young age that feeling that we only get our few years here and that it goes relatively quickly.
I wish you had an aunt or uncle or someone to say it's ok, speak to SS start the ball rolling with a plan to move your DB to supported living.
He may well settle and enjoy having his own safe level of independence.
You could do this slowly and plan to then move to Canada or elsewhere and live your life.
You are a loving sister but you don't have to give up your chance at a life you choose, it's not good or evil choice here it's a sensible fair choice or a life of regret and bitterness.
I would do what you want now rather than wait and move somewhere here.
You can speak to SS and tell them you are moving abroad in (insert timeframe) otherwise they will happily leave you to it.

Op, you are amazing.

I have a brother who sounds similar and, much like you, I would never even consider putting him in supported living. The ones I have seen are just horrendous - residents relying on food banks, drugs being dealt from the house, prostitutes working from them. Not anywhere I would put my worst enemy, totally and utterly devoid of love and care. I will never understand this attitude that our families are not our responsibility - of course they are!!!
You are a superstar.

I really admire you, OP, but agree with what @alongaround and @TheYearOfSmallThings said - making some changes would benefit your brother as well in the long term, not only you. Listen to what the parents of children with additional needs are saying about what they would want for their children as well; you would not be letting your parents down at all by starting the process of reducing your brother's dependence on you.
I really hope you find a wonderful place to live with lots of glorious hills to hike over! Wishing you all the best

@SimpsonWave I have worked as a support worker for adults with learning disabilities and autism. There are options available for adults with autism to live independently or in shared accommodation (with their own room) with support for things like going out. You would be able to do things with him and enjoy his company without it feeling as though your only role is to look after him, you are equally entitled to a life of your own and it will just get harder as you both get older and you resent him more.

The companies that offer this support are really good and all about the individuals, at least the one I worked for was, the carers definitely came second. Often the issue is social interaction and a shared house could be perfect, independence but company if wanted. It’s worth looking into.

Would you consider moving to a remote-ish area which has a reasonable amount of social housing available?

DH and I moved to Scotland from London and we went from a poky little bedsit in London to our own house in a small village in Scotland.
There are empty properties in this village right now because people don't want to be so far from transport links.

It's on the sea and there would almost certainly be opportunities for you as a HCP either in the community or in the small local hospital.

When we applied for housing it took them only six weeks to offer us our home.

Of course, it wouldn't have to be Scotland, or our village, but there are quite a lot of remote parts of the UK where housing is available.

I would go mad in a poky flat in your circumstances. At least being in the country, your brother would have lovely scenery all around him - and so would you, of course.

I agree that you should get your brother into supported accommodation or similar. Maybe in a different area of the UK if you fancy a change of scene.

This situation is not sustainable, you will eventually become resentful and depressed. If he was in nearby accommodation you could visit regularly, but still have a life of your own, dating, kids.

It might do him good, in the long run, to have more people involved in his life, even if it's not his choice at first. And if you die first this would have to happen anyway, better to do it in a controlled way with your support.

Sorry if it’s been mentioned but there should be a carers group in your area. Or near. Seek them out and ask for advice as a starting point. Your brother is entitled to a full social card assessment as are you. See this as a starting point. Good luck! You sound lovely.

Have you a plan in the event that you yourself become unwell or incapacitated? Heaven forbid, but it's good to think it through.

There is great advice and empathy on this thread, and my heart goes out to you. I'd say guilt and feeling selfish are the biggest things for you as you may feel you wish to abandon him to live your own life. You are not, you are probably going to give him a gift of something very special living a new life with people like him.

I'm finding it hard to find the words, but I have an 18yr old nephew in similar circumstances. He had supported living arrangements away from the family and he is off to College soon on an assisted program. He is flying high.

@MeMeMeMeAndMoreMe I was also going to suggest the Camphill Trust. They have some houses in my area but I think have more rural places too.

OP I do agree with others that you need to thing about the long term situation & how your brother is currently not being given the chance to learn to cope if your situation changed.

At the very least you need to build in some respite so that you can have a break & perhaps do more travelling if you would enjoy that.

Your brother may not be happy about changes in his life but better to do that gradually when you are there to support him.

So a bit of OPs Canada dream, while being close enough to her brother to be able to fly down and visit him every 6 weeks or so.

It is perfectly acceptable to say to social services “I can’t keep doing this” work with them and find him somewhere long term where he is happy and safe.

then you can go back to being his sister and not his carer and get your own life back.

Please look into Supported Living. I have a son who is supported this way, as was my brother. My brother should have moved into Supported Living years before he did (my mum and dad thought I would be his carer when they died, but I put a stop to that) as he really enjoyed it.

What is the back-up plan if you are unable to be his carer?

Really your parents should have thought ahead and sorted this, not drop it in your lap and hope for the best

Though it's a bit late now I very much agree with this - also with those who've noted how traumatised he was over losing the parents and wonder what'll happen when OP isn't around either

I have a DS in supported living myself, and IME the time to do this is when you're still able to advocate for him; leaving it until a crisis happens helps nobody and is no basis on which to make rational decisions

Best of all, you could well be amazed at what he becomes capable of with more independence, and you'd get a life too

I am going to be blunt.
He is not your responsibility.
What would happen if you were fatally injured in an accident ? Where would ge go then ?
There are no prizes for sacrificing your life . You can do it if you want to but you would be a fool if you did.

You'll know through your own work (I'm assuming you're a MH/LD nurse, OT or something similar) that supported accommodation isn't a bad place to be. It gives people what we all have as we get older - our own lives, independence, but with the necessary support that the individual requires. Is there a reason why you wouldn't consider a decent supported accommodation for him?

How many friends does he have? Does he have a social life? Any independence?

If the answer to the above is no, said with significant experience in this area, your loyalty is actually disadvantaging him. He needs to be an appropriate setting with his peers. Residentially. So he can have social connections, independence and a life of his own.