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.

I'm in a similar situation, only my parents are still alive. My sibling lives with them for half a week and half for me.

I just wanted to say that there is hope for you. I met my DH and he completely accepts my sibling and all that entails! Our DC understand that their aunt is different n that's ok. My DH can be annoying, but he above and beyond in this respect.

It was daunting introducing the subject to my DH and then introducing them, but they've both dealt with it fine, so your dream of partner and children is achievable. There are men out there who are fully prepared to deal with that- and I've been married 32 years now!

We live in an AOONB there is alot of care facilities here - Cotswold chine community Stroud court a lot of indie places too it’s very affluent you would be snapped up with your skills on a great wage and place to live I think

I really think you need to start living your life with yourself as a priority or else a decade down the line you will have such festering bitterness and resentment towards your brother you will be the last person who should be looking after him.

No consolation I know, but I think you are an absolute hero. The way we treat carers in this country is shocking.

Can I suggest that what you have described might not be giving your brother what he needs and that you shouldn't be leaving him home alone when with your support (as in working with SS) he could be doing more and you could regain some independence. I am the parent of an adult with additional needs, she lives at home but gets 6 hours a day with a support worker. The support team also spend occasional weekends in our home and we go away overnight. We are gradually building towards supported living. You can advocate for him and get a good outcome - not all places are as you describe and I hope if in your professional life you see such poor care that you are reporting it rather than accepting that this is how it is. Your parents would not want you or him living like this and you can make changes. However you need to get out of the mindset that what you are doing is the only way.

@SimpsonWave maybe focus right now on what would make life better for you both. What does your brother want from his life? You both sound isolated and I wonder if your brother was more connected to others not just you if his world would open up a bit. This could lead to opportunities for you longer term. Have you looked at any home based support, I know recruitment is awful at the moment but maybe a direct payment for some support which you recruit someone too will help. Having your brother as your whole life is not fair on you but also not your brother, but I think you are doing an amazing thing!

Would you be able to move to Canada and take him with you?

I can definitely accept staying in the UK. Canada is merely an example of something I would've liked to have done, if I wasn't a carer. But it's not the deciding factor as to whether my life is a failure or not, just one thing I've had to sadly accept won't happen for me. I do need a change of scenery though, our current town is really unpleasant and my brother has never been anywhere else which I find sad. I think moving to a nicer area of the UK (I really like the outdoors, and if I had time for hobbies, it'd be hiking/biking) and bringing my brother along would be a good solution, even if he did eventually go into supported housing in the new area. Supported housing will deffo happen in the future, as I get to 30 I think I'm really going to feel the pain of not having had my own family and things will have to change.

Short-term, I think the next step for me is to move to somewhere else within the UK in which I will be happier.

You situation isn't uncommon.
You need to think of yourself too. Your brother will be a child for life, he won't know any different. What are the options for supported living or institutionalisation?

You have to live your own life, not your parent's lives. It would be grossly unreasonable of anyone to make you feel that your DBs happiness should be at the expense of yours. You sound like the burden of caring is already taking its toll, you should not push every suggestion for residential away. Your DB may even come to love residential - people to chat to, activities and attention. He might even view it like "growing up" and getting his own place there, maybe the chance to buy stuff for his room?

OP I really feel for you. I can tell just how much you love your brother from your post. If you have to give up the Canada dream could you choose a really lovely part of the UK to live in instead? If you love the outdoors aspect of Canadian life maybe Scotland or Wales? There are some lovely towns. You could make a good life somewhere else in the UK

I am sure you've had lots of advice but I would say that I know people who have moved to Canada and moved back again, it's expensive and they found it very tough after living in a country with more state funded support.

It sounds like there are things you could do within your boundary of not leaving your brother though - moving somewhere that will give you a better quality of life. I moved 5 years ago to a home with more trees and closer to a forest and even that made a huge difference.

Your job skills are fantastic, you will always have work. But I do think you should'n't give up on meeting someone. There might be someone out there for you.

You're in an incredibly difficult situation.

I think there is a middle ground between going to Canada leaving him and looking after him at home for the rest of your life.

I think you should look at supported accomodation...with you visiting frequently. You can't give up everything. You deserve to socialise, enjoy your life and find a relationship.

If you do get him living somewhere and feeling happy, you could at the very least travel and perhaps in the future look at living abroad. But I think supported accomodation should be your first aim.

Unfortunately lot, I did do plenty of research and it's not possible. I enquired with those qualified as to whether I could take him on the condition that he isn't entitled to provision or benefits, and they said no (probably for the best, I imagine I'd have come to regret taking him under those circumstances)

Just saw you are 27/28 - IME this is the time you really grow up and go right, what do I actually want. I would seek a therapist for yourself as an absolute priority to open up your thinking around what your life can be.

I am sorry for the loss of your parents. Your post touched me because I have a close relative in a similar situation to yourself. You sound like an amazing support for your brother. But please think about yourself and what you want in the next ten, twenty years. See if there is support out there for your brother, with the hope of making him more independent and living in supported accommodation. My relative regrets they did not pursue relationships and having their own family. It's really sad because they didn't get to live their life. You can have a partner and your own children once your brother is supported. You're amazing for helping your brother. He's very lucky.

Do you have any input from adult social care? If you haven't then please contact them. I don't know where you live, but there are some facilities around the country specifically for people with autism
The one where we used to live was very good
The point is OP that your brother needs to get used to other people. I appreciate how difficult it is, I have an adult son with high functioning autism and he can be rather challenging, but relying on you is doing neither of you any good. Have you contacted Autism UK to see if they can signpost you to additional help?
You really do need to be living your own life as well, so please try to contact any other agency that you think could help, including charities.

I feel for you OP. I have a disabled sibling and so few people understand the tension we feel between responsibility and profound love.

There is an excellent charity for people like us, called Sibs, they have a dedicated worker/ team for adult siblings. Please contact them for advice, I have used them and done some volunteering for them and found them excellent.

I am so sorry you have been put in this horrendous position. It is grossly unfair. What area of Uk are you in?

Let go of the Canada dream, its great for a gap year but the annual leave and maternity benefits are shocking and a terrible place to be pregnant/work & have kids.
But definately move somewhere more picturesque here - and before you decide where, check out the local asn groups. maybe if you moved somewhere more remote you could afford a house with a garden, maybe with the potential of building a separate annex for your brother in the future to give you both some space?
i’m sorry you lost your parents so young. my son has quite severe autism and i am an older parent and this is my worry for him.

You poor thing, that sounds so hard.

You really need to make a change. Not just for your own sake (you deserve your own life) but also your brothers. He needs to have a wider network of support in his life than just you.

Lots of good advice on this thread, but I would second the idea of finding the highest quality supported living facilities in the country and moving to that area to get him in. Then you can start to detach a little, while still remaining in his life, but crucially you'll be building your own.

You know yourself this isn't sustainable. So take the sensible steps now to get you both on the right path. Very best of luck ❤️

You wouldn't be dumping him in supported living, you would be helping him move towards a fuller life and as much independence as he can manage. In the short term it would be difficult for him to adapt, but in the longer term he would be fine with your continued input.

I don't agree with those saying "Move to Canada". Sometimes we have responsibilities we can't walk away from and for now I think that is the position you are in. It may be different in a few years if your brother is settled and living a good life without help from you, and then you could consider it. But I also think that once you get out of the situation you are in you might feel less desperate to move so far away.

You work in this field so you know deep down that you being your brothers whole world is not good for him. If he won't leave the house unless it's with you and won't have people coming in.....the shock of what might happen if you get sick or die tomorrow is horrendous.

He needs support to flourish in the outside world. Mix with people, do activities, be part of the community.

And you deserve to have a life and be his sister not his carer. Your parents wouldn't want this for either of you.

I’m the parent of a child with a disability who will need lifelong care. I also have two other children and I would be terribly upset if they put aside their own dreams and opportunities to look after her. I can completely understand the responsibility you feel and you sound like an amazing sister but please find a way to do the things you want to do. You can visit, telephone, video call your brother and even worst case scenario, if it didn’t work out you can come back and carry on as things are now, but if you don’t try then you’ll never know.

As a parent of an adult who needs support-granted no where near your brother’s level-I was always very conscious it was my job as his mother to worry about the future and not his older sister’s.despite the fact his sister has said she wants him with her when myself and dh have gone.I was always making it clear that he is not my daughter’s responsibility.Your brother shouldn’t be yours.My daughter had said she will help him and over see any extra help he needs as she wants to but I’ve made it clear it’s not expected at all.she has her own life and children. I’m sure your parents wouldn’t have wanted you to put your entire life on hold either.My son is managing to live alone with our support and it has taken a few years to get him there.He has learnt to become much more independent.i know we are blessed in that sense.it hadn’t been easy but I needed to make sure he has a good life too.

maybe there is another way like getting an enabler for your brother-one that truly has experience with your brothers difficulties.You deserve a life of your own