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.

Playing devils advocate here. Do you want him to live in supported living type accommodation? He would then be less isolated and be mixing with other adults who are also needing support. This may well be of benefit to him.
I cannot imagine the situation you are in as i am not in it but it may turn out to be the best for your brother if you helped him secure this type of accommodation

OP, you are a wonderful woman. But you HAVE to look into a way of finding some independence for your lovely brother, some supported living. It is out there, but it's hard to find (I believe - we haven't tried looking yet...). Maybe even move to a better area of the country to get him support??

It is massively unfair, the way life has dealt with you and your brother. Some people would say 'but that's the way it is' but I'm sure your parents didn't want your entire life to be shackled to your brother in this way. Even if Canada isn't an option, if he's living independently then you would be freer to pursue your own social life and dating, and travel some more.

I'm 50 this year and I have two sons. One is NT and the other is severely autistic with LDs (he's 12). I am literally a quivering, terrified jelly when I think of our future and what on earth there will be left in the way of adult social care when we are no longer able to look after him, and though we love him passionately, I think we owe it to him, to his brother and to us to try and find supported living appropriate to his needs before we HAVE to. That way, it's not done in a crisis, the worst possible time to cause such upheaval. I also feel bitter that we can never really travel very far from the UK (but god we're lucky to be able to do what we do! every time I get on a very shorthaul flight with him, I wonder if it'll be the last time it'll be allowed), I feel desperately sad that my other child will always be responsible for him, I know that even if we wanted to, we could never emigrate somewhere like Canada (yes, we once looked into this too!). But there ARE things we can do within our constraints. We want him happy and loved and supported. Life HAS to be better for people like your brother and my son, but it also needs to be liveable for those who love them. I wish you all the best, and please try to find that supported living!

(did you see the 'There She Goes' special that aired this week? It's really excellent. In their words, we need to find supported living solutions that won't end up on Panorama!)

Like others have said you are both roughly the same age as my own boys and there is no way I would expect or want one to look after the other in this way, I know your parents didn’t know that life was going to be so short and didn’t have contingency plans but I know if they had had time they would have, they would never have expected you to do all this.
You are an exceptional young man and have an exceptional relationship with your brother which you want to keep as good as it is right now, keep going like this and being human resentment will grow and your own health both mentally and physically may decline, so if you want to keep this special loving relationship going you HAVE to put yourself first. For his good as well as your own.
Can you introduce him very slowly to a life more independent from you, using carers or respite care for the odd night, so you can go out and have a life and build the separation up slowly so your brother adapts naturally, yes he’s going to object initially but eventually he will get used to it, then over time hopefully you can find somewhere amazing for him to live that gives all the support he needs and you can visit and those visits will be so special and something you both look forward to as you will both be living your lives independently and you won’t feel bitter or resentful that you lost the life you should have had and instead will be pleased to see him..
Your local council will have a carers department as part of social services who are responsible for your welfare alone, independently of his. I’m assuming he has a social worker and a care plan that pays for his care while you are at work, if not it’s something else to look into. Carers have a similair plan for themselves, it’s a legal requirement that all carers are entitled to an assessment to ensure their needs are being met, so there should be a fund there for you, to pay for the respite care you need and provide you with the ability to go and do something you want to do. My husband gets three care hours a month to bolt on to my normal care hours that I am entitled to after breaking my back, it gives him six clear hours to go off and play golf and have a break from looking after me 24 7. It also pays for his golf. You must be entitled to something from that fund, more care hours, respite care, gym membership etc, it’s worth a try.
The other option is to contact charities locally concerning your brothers condition to see if their is any help they can offer and also I’d contact citizens advice as they can often point you in the direction of specific charities or funding that can’t be found independently.
You want a family and life of your own and you have earned that at the very least already, you’ve already done so much more than most, but then you’re in a caring profession, as your in the nhs, so that already makes you a very special type of person, you’ve already made your parents proud but there is no way they would want you to sacrifice your happiness and welfare for your brothers, no way, so time to search for help, I’m sure it will be out there, you may have to fight for it a bit and it will take time but please please don’t give up on your dreams whether that is a family or one day going to Canada, the last thing your parents would want for you if for you to permenant lay put your life on hold.
Take care of yourself, stay strong and know that there is help out there and lots and lots of people who see what you are doing and think wow, what a guy, you should be so proud of the amazing human being you are and your brother is very very lucky to have you.

WOW

I really feel moving somewhere else isn’t the UK could improve things massively for you. The Lakes is beautiful, so is Scotland.

OP I really feel for you. It must sometimes feel like a hopeless situation but so many things jumped out from your post. You are 27 and you have dealt with the death of both parents and taken on your severely disabled brother from the age of 25. This suggests you have a resilience, selflessness, practicality and strength way beyond your years. Your empathy for your brother shines through your post. You have a career, understanding and specialist skills directly applicable to your brother’s situation. This means you are in an exceptional situation to appraise any care you put put in place and navigate the system. You really are exceptional to have engineered this support for your brother. But you sound burnt out. You know you need support and help to help him. Canada is the fairytale but you recognise that it is not currently attainable. You also understand there are compromises which might work for you both. He is so lucky to have you and your future family will benefit from your patience and selflessness. These skills will always be with you. You are only 27. You have so much time. You can organise this to benefit both of you. Imagine you are the sister of one of your own clients. What would you advise? Do that.
But firstly, you need a break. You need to organise a few days respite care and go away and think. Even if it is not ideal, it will be ok and he’ll be fine. It will break the cycle of his needs always trumping yours which is desperately unhealthy. Work out how to make this work. Life has dealt you a difficult hand. But remember no hand is perfect. It’s your job to maximise the hand you have been dealt. Ditch the guilt. You have credit in this area and it will only hold things back. Focus on building as much independence for your brother as you can, even if that is negligible. Build from there. Baby steps. Find a rural community which will welcome both of you. Where the pace of life is gentle and where there are people who will look out for your brother. Consider Inverness or a similar place. Big enough to have a life and a meaningful job but a community with lots of potential support. Nature on your doorstep and lots of great outdoor activities and fanatics. It won’t be easy but you’ve already done the hard bit, supporting him through the death of your parents. You love him and you will always feel responsible for him and that’s ok. But it doesn’t mean you remove all obstacles in his life and Molly-coddle him to the point where both of you are hyper-dependent and neither of you have a life. There is a compromise to be made here where your desires are valid. You can set yourself free and keep him safe. Any man would be lucky to have you. Good luck.

There is lots of good advice on here and I hope you find a suitable solution. I just wanted to say I think you are an amazing person and your brother is so lucky to have a sister like you

My daughter who is now nearly 25 has been in supported living for over 4 years. We had no choice with extreme behaviour and learning difficulties. She goes out locally with support staff. Since Brexit there has been a high turnover of staff and it’s probably effected her. I visit her twice a week. It’s tough having special needs children. Sometimes you have to make some hard decisions.

That has broken my heart for you, I am so so sorry. Everything thing you describe is heartbreaking. You feel trapped and cornered and that’s the worst. I can only offer my support. For what it’s worth. I am sending huge hugs x

@SimpsonWave as everyone else has said your situation is so sad and you sound like the most amazing sister. I can feel the weight of obligation that you feel from your post.

I have a friend with two sons, one is NT and one is severely autistic. I know they are very conscious of not wanting their son to have to be cared for their other son and are making provisions now for when they are older.

we live in Cheshire and there is a brilliant facility here called Bright Futures which have schools for younger people and then live in accommodation once they get older. It’s really highly regarded and seems like a great place. I see the staff taking the residents out for walks every day. It’s near a duck pond, two canals, loads of countryside and so on. If you would like to PM me for more details on the area feel free.

good luck with everything.

I so feel for you and your brother is very lucky to have you I'm sure you are not alone out there in your situation , I don't know what part of thr midlands you are in, but I worked in a supported living place north of Birmingham for Autism UK absolutely wonderful staff there some probably still there now though it was a few years ago now .if you haven't been in touch with the charity though I would definitely try them for some support, even if you yourself could go to a carers group maybe you would meet someone in slightly same situation who would be understanding of your brothers needs.I hope you get to Canada one day is there any way you could get him there for a holiday? Failing that for now getting him to the lakes or somewhere as beautiful would definitely be worth trying. All the best for your future sending a hug

This a 1000 times....

You wouldn't have to pay for his care-he's a separate entity from you....!!

Essentially, the state is getting out of their responsibility for your brother... As you're picking up 100 per cent of the effort and cognitive load. At GREAT cost to you!!

When do you get to have your life???

Yes... I can see your bro won't LIKE anything that is not EXACTLY as it is now... But this is at massive cost to you...

Your situation is completely untenable..
(I'm npt minimising your distress... I do understand re caring... Currently I'm looking after a very difficult elderly father🙄)

You being the default carer for him for EVER, is simply untenable. And sadly, nothing will change unless you make it!

The state is only too happy to leave carers to it, until there is an emergency. (think about... What would happeb tp your brother if you needed urgent surgery?? /hospital stay... Something would HAVE to happen in those circs...)

Does he have any social worker? If he doesn't please contact the local community LD service.. And request an urgent assessment. For him.

I would use words like 'imminent carer breakdown',

Either, insist they source some significant respite for you... One week a year just won't do it...

But... This is going to sound harsh, unless you want to continue in this hideous situation... For ever...

I would massively push back and say... "My caring responsibilities are coming to an end, and I can no longer care for him 365 days pa after 3/6 months" ...

And that's it.... They wjll HAVE to put services in place.... They have a legal duty!!

And the state is very good at making family members (women especially) guilty for not sacrificing their entire lives to look after a vulnerable relative... Also it is financial... It costs the state... (so it's much cheaper for them, for you to sacrifice your life!!). I've sat in meetings where some poor exhausted carer is tried to make feel crap, as they no longer want /can continue...

You need to be VERY VERY assertive for your own needs... You've done massively more than your fair share....

I do wonder about your bro's mental state... Re depression /anxiety.... There are psychology LD services (on NHS) that could help him with managing his anxiety... And tbh he could keep having this anxiety over anyone else being involved, indefinitely... Which will keep you shackled to his full time care for ever!!

And OFTEN it is a massive fear of the unknown... years ago i worked with families in very similar situations to yours). Several of these people we supported to 'leave home' either into supported living or group homes..

And at his age, in any normal world, he should be living away from family... In shared /supported accommodation...

Let's look at a different future...:

Your brother has had his hand forced as you can no longer care for him.
He's agreed to have psychological support to manage this transition as he now sees you need to do other things with your life.

He's now looking forward to a new life where he will live with others with similar needs and support from staff tongo out and do cool stuff...

The state is paying for him to live in a group home with staff... (if there are none in the area.... People can and do move out of area to get good care/education (eg Star College in Gloucestershire.)

You're able to visit /face time reguarly.. You get your life back! Perhaps from uk, perhaps from Canada...

In your new life, you've got a hot new boyfriend and it's looking serious...

Good luck.

There is a future out there... But you'll need to he assertive.

I would hope that when I pass away my kids would stick together and take care of each other. Both of you lost your parents and losing his mum devastated him. I couldn't leave my brother like that with no relatives around to go to another country. If he's like a 8/9 year old he would definitely feel abandoned. He way as well be a foster child. You need to find a way to get him to Canada with you. What if something happened to him and he's so far away? You'd regret it that you weren't there for him.

He's not just any family member, he's your brother. He deserves a family too. Finding a partner that's willing to deal with the situation can be a tremendous help to you. I hope you will.

You sound like a very caring person. I'm sure somebody would be very lucky to have you as their wife or partner.
Xxxx

I'm so sorry to hear of your difficulties. I am the mother of a child with a disability so may have some tips. Firstly you should contact social services and ask for an assessment both for himself and for you.
They will also ensure that you and he are getting all the benefits you are entitled to, including council tax reduction, PIP, ESA and carers allowance for you.
Then think about what his long term future might look like. As an adult in his own right it is him that will get financial support for supported living or residential care, not yourself. My adult child is in residential care in a lovely campus setting. He pays out of his own benefits £130 a week or so, and the true cost of around £900 a week is paid for by the local authority.

We were asked to look at these places and see how suitable they were, if not we kept looking.
My adult child is very happy. He has real friends, is well cared for and does lots of activities, college, swimming, bowling, horse riding. The activities 3 suited to his needs and paid for out of benefits or by the LA.

You should not feel guilty about this. Long term he will be independent, have friends and a full life with high quality care. He is not your responsibility. I would not dream of expecting my children to take my child in, much as we all love him. They have their own lives to lead. I have him home for holidays and the other children come too. We are now all his court deputies so we have authority to deal with his affairs. Social care can tell you about this.

My child does go to stay with his older siblings too, for a couple of nights, , but this is their choice and I am reassured that they will care about, not for, him when we are gone.

Please contact adult social care, there is much out there to help if you will allow it

Your story really struck a chord for me as my best friend could be in this situation in a few years time, she has a sister with cerebral palsy and a lot of additional needs, her sister is not self sufficient in any way including toilet and needs help with everything. Her Dad died a few years ago and her mum cares at home for her sister and she wants my friend to step in when she goes. Fortunately her mum is fit, healthy and this should be a long time away.

However, some thoughts, if you moved somewhere better for you both, you would feel happier and better for your brother as many have said, it’s highly possible for you to meet someone who accepts the package. This family live in Perth in Scotland which is beautiful and there is actually a really good support network for adult care (a lot run by charities) where they will pick up and drop off the adult and have them involved - think gardening, music, arts, cooking type activities. Would this make a big difference for both of you if you had this so your brother could have this away from his time with you?

could you take him for a holiday/weekend break to explore and see if it would work?

Dear OP, I write as the Mum of an adult with a learning disability so I completely understand the issues. Please don't allow yourself to be a martyr. You and your DB both have the right to independence and self determination but unfortunately it rests with you to make it happen.

There are services out there - and the offer varies in different parts of the UK. Find out what your rights are as a carer in different areas, and make decisions to move you and your DB towards your goal. It will not be quick or easy but it can be done.

It may well mean relocating but change is inevitable and necessary.

You both deserve and have the right to a good life. Please make it happen. Sending courage and love xx

I don't have an answer for you, just want to send you a big hug. ❤️‍🩹

I would make the application for Canada, you are the skilled individual you’ll just have to show you have the resources to support another individual

my dream is to emigrate their too but family ties keep us here

Please please please look into supported living or residential car for your brother. I have a 41 yr old son who sounds very similar and he's become to feel totally at home in his care home. Been there 10 yrs. We have him home every weekend so it feels like shared care and we get to recharge our batteries and have a life while he's not with us.
Like us you will always beat yourself up, there's no avoiding it, dammed if you do, Dammed if you don't. Resentment may build if you carry on in your current situation. but with time the guilt you'll feel will ease as you see him settling into his new routine.

You need to have a chance to live your life and it can be done while still having plenty of access to your brother.

I know that you love him and want the best for him but your mother didn't carry and birth you just for you to give up your life for your brother. That's just not fair. There is a balance to be found where you still have dinner with your brother and take him for rides and still have your own life. Both of you will have to compromise, now it's just you doing the compromising. Maybe you should take divorced parents as an example, seeing their kids part time and still have time to have a new life. Neither of you will have the perfect life but I do think that you can find a way for both to be happy half of the time, and that is okay. It does start with finding accomodation for him, but you already know that.

I know this might not be what you want to hear but my autistic son is about to move in to supported accommodation, he is already in 5 days a week respite and he absolutely loves it, the carers take him places I could not and give him a window into a wider world that I could not. He will have a peer group at his new home which will be even better. So supported accommodation is not as bad as you fear and unfortunately even if you don't go to Canada you will not be able to meet his needs long term and you may get more 'trapped feeling' as time goes on which is not good for either of you.

Hey, heart going out to you. May or may not be helpful, but I lived in an abroad for 10 years, went in my twenties - in NYC, loved it but decided to move home eventually. Instead of returning to the city I had originally left behind (london) I relocated to rural countryside and haven’t looked back. My rural little town is young and has a great communities where people truly look out for one another and there’s a lot to do. I honestly find the little town more nourishing to my soul

I think you're compromising solution is spot on....
Make a long list of good places to live

Knock off any that don't have any good supporting centres/living. Decent accessable transport (he may improve enough to use it)

And move

I think you are right about Canada but your brother may flourish in a more laid back area giving you the possibility of having a family life and him some independence. I know it will be a massive shock for him but he must have some capacity if he can look after himself and was eventually able to cope with the double loss.

Good 🤞 Luck

I have no direct knowledge of your circumstances but a close friend of mine had a brother with Downs and 2 parents who kept him with them at all times. They did everything for him and together 24/7. Then they both died. He was devastated but went into care and slowly flourished. It was totally unexpected by my friend who had always insisted she would take him in but her circumstances made that not possible at that time.
I would say, first move to a good social services area the start to cut the ties a bit. You might be surprised. I do hope you find love and happiness in a family of your own. It will make it a pleasure for him too to share that with you. 💐