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.

It sounds very hard for you. If it was me I think I would find some supportive living accommodation locally. Then you can still be supportive and involved but have your own life too.

Not much help, but just to say how lucky he is to have you. I know it is different but, like many, my eldest's needs are severe and it is painful to think about what will happen to him when I die or become infirm.

Please don't feel bad I work in the care sector and I hate to day I'm glad I can go home at the end of the day . There are options though are social services involved? Maybe he can placed in respite care for a while there are special accommodations for people with learning difficulties, there's day center , special colleges , care packages and sometimes funding from the social . Please look into these things you've done so well to take him on bless you

You poor love. I’m so very sorry. Please try supported accommodation for him. You may not get to Canada but you would have freedom.
I wish I could help.
I send you love and hugs.

There's a very good forum at carers.uk.org - sorry if this has already been mentioned - they might be able to give you more advice. Sad situation.

Hi op. I feel so sad for your situation. You are both within the age range of my sons and as a parent I am sure your poor mother and father would be horrified at how your life is being dominated by your brothers needs.
all I can offer you is understanding and a couple of practical suggestions
If you move go to a small town with an active community, nice places to go out, and access to the things you enjoy. Find a property that allows you both to have your own living space-even if it has a garage you could convert it for your brothers use
in a small community you will find the carers are local, and in my experience (with elderly relatives)more caring.
find him a personal assistant in his age range. A bloke. Who likes gaming. My 3 sons 26,28 and 30 all love board games, the card game magic, and dungeons and dragons. Safe, very boyish, and totally boring to most women. It could possibly be a way for him to engage - online is a huge community but there are cafes and shops (geek retreat) where they go to play
market Harborough is nice, or some of Kettering. Both not too expensive with decent facilities. If you go that route pm me. I have a son who would be a good befriender. He is on the spectrum, so understands the pain of others.

Would you consider moving to Wales? I am a carer to my son who is unlikely to be fully independent ever and I live in a lovely community and feel there is enough to do here to give me a good quality of life.

I live in Cardiff but there's lots of other beautiful places.

I’m so sorry you feel this way. I can’t imagine how hard it must have been to lose both of your parents, so sorry. Your brother loves you very much I’m sure, for all you do for him.
I can’t offer much in the way of advice but is there any charities you could maybe talk to that could offer useful advice? You deserve to have a life and pursue all the things you want, too. Sending a virtual hug.

I think the bottom line here is that he can have all the things he requires in sheltered accommodation, if arrangements are made for the trips out and so on.....It won't be provided by you which is what he would prefer but it can still happen for him and he'd get used to someone else doing those things eventually.
You on the other hand you can't have ANY of the things you want and need while being his carer.
Bless your heart for doing everything you do and have done but you deserve a life too my love.
I really hope things work out for you but you are going to have to do some things that make you feel guilty and uncomfortable to start with and then you will eventually realise it all isn't so bad in the end and you've done the right thing.
Wishing you all the best!

I have not read the entire thread, but I wanted to comment as I have an older brother with profound disabilities. He lived at home with my mum and dad until my mum died suddenly when he was 40. I had 2 toddlers at this time and my husband and I had to basically put our lives on hold for 3 years to support my dad with everything as he could not cope with caring for DB or the house by himself. When dad was diagnosed with lung cancer we had to find emergency care for DB, which was incredibly stressful.

He eventually moved into his own flat in a supported living facility. He has carers 16 hours a day. It has not all been smooth sailing, but my role is now that of advocate. I visit every week, see to his finances and am of course his next of kin. It is still a pressure, but I have over the years detached my self in a little way. I was very opposed to SL for a long time until someone asked me why I was so against my brother, in his 40s, having his own independant life? And they were right. Your brother is entitled to his own life, his own home, where he make decisions and choices about his life.

Your parents did not create you to be your brothers replacement parent. You are his sibling, a role that is one of friend and advocate. You are entitled to your own life and future.

I urge you to consider a future like this, and also to contact your local sibling group and Carers support organisation.

I haven’t read the whole thread op but if you do want to move to the coast - have you considered the Isle of Wight?
it’s stunning. Great beaches. Cheap property and a real sense of community, of ‘belonging’. The special needs support services there are really well set up and you could get your bro used to some residential respite whilst you have a holiday, or just a few days at home alone.
it’s a wonderful place to live, the care services are superb and it’s cheap and beautiful.

Beautiful post.

https://www.sibs.org.uk/?gclid=EAIaIQobChMIi43a-_3Z_wIVsItoCR3m9AYfEAAYASAAEgKa-fD_BwE

https://carers.org/

It sounds also that your brother would be able to be in receipt of high levels of benefits. He would also get housing benefit.

You have one life, and so does your brother.

At the college we had quite a few adults with learning difficulties, living in supported flats/sheltered accommodation. Their parents found it too much caring for them and the young adults loved being independent. Contact social services and ask what's available for him, when you move away.

Definitely get online and research areas with good adult social care. Get a social care needs assessment for him and also for yourself as a carer. You say he’s against having someone come in and help him but that’s just because he’s never had to accept someone else. A gradual exposure type approach might help. Maybe get a PA to come out with you as well to start with and then once accepted into the situation you can gradually reduce your input for some days and increase external support. It might take time but could work. I work in a specialist school which is part of a larger organisation that has adults social care services as well. The adults who live there always look happy when we see them with their support workers. They have a range of disabilities including autism. There are adults who go to their days services and also those who live on their residential settings. The school I work at also has a lot of children who live in various residential settings separate to the school due the fact that families can’t meet their needs without that external support.

You sound like you’re doing an amazing job with your brother and there are many people who would have walked away from the same situation. You do really need to get in support whilst you don’t fully need it 100% because if anything was to happen - you fall I’ll for example (or worse) then it’s going to be even harder for your brother to cope. And also you are allowed to have your own life without feeling guilty.

I am also a parent of a child who is autistic but likely to be able to be fairly independent and hopefully get a job in the future. I volunteer with local groups and see what local organisations in the area can offer to support families who support disabled adults.

I think you’ve built Canada up in your head as a perfect life. You visited young and have happy memories but in reality they have problems there the same as anywhere and salaries might be higher but usually so is cost of living.

to get you some respite and your brother a richer life, can you get him to some activities for people with similar needs? Social clubs or enterprises supporting SN people in work? we have a cafe nearby which is staffed by people with special needs. If there is nothing in your area perhaps see if you can create a Facebook group of young carers in similar situations and arrange a meet up etc.

I don’t think he should be a blockage to a relationship and a family for you. Men who are ‘put off’ by this are not worth your time. Did you have long term Relationships prior to your mums death?

I’d start getting him to build relationships with other people because one day, when you’re many years older, you will not physically be able to do what you do now (or if god forbid you were in a terrible accident). Building the foundations now would help make this easier for the transition when that happens. Respite services could help do that and give you a break too. Start with short days to start with and build to residentials.

I am also in a similar situation in that I feel tied to the country by my brother who also has autism, so I understand your frustration. I have managed to maintain a relationship and have kids though, and my brother lives in supported living

I am a parent of a 25 year old who I have just had move into assisted living. It's devastating, guilt inducing with a strange edge of freedom all at once.
It's been one of the hardest things I've had to do, but I've done it because the younger he is, the easier it will be for him to adapt. If I left it twenty years to the point that I couldn't cope any more, it's going to be an ever bigger issue for him. I feel like I have had to be cruel to be kind, and I think maybe you need to be too.
You need to have a life other than him or the resentment will take over your whole relationship and that's not healthy long term. It will make you ill and unable to care for him, you don't want to get to carer burnout, I'm pretty sure from your job you know what that is and that will impact him too. Better to take baby steps now and find the right place and gently ease him into it.

Good luck

I just wanted to send lots of love and hugs. My son is 16 and has complex needs that make residential and supported living impossible and your situation is something that scares the life out of me as his sister is saying that she will look after him should anything happen to us.

What I am doing is speaking to the social worker about direct payments it’s cheaper than supported living and so they have been very receptive and we are having an activity budget. We have been able to focus this on the special interests and pool budgets with other young people that we have met along the way. It’s early days but he has made an acquaintance that he is happy to lecture about whatever is of interest (and the other young person is happy to be talked at). Long term I’m hoping to build this up to reduce the burden on my daughter should anything happen to us as parents.

It is worth asking for a social care assessment or a carers needs assessment hopefully you will be pleasantly surprised about options if they start to think bugger if this arrangement breaks down it’s going to be expensive xxx

I had a cousin is disabled in a similar way to your brother. When he was a preteen his parents decided to move the whole family to Anglesey because he was being bullied so much in the city where they lived . He was the youngest of four siblings and they all thought that a move was best for the whole family .
They have all had the best life living a small fishing village . Once they were settled he was able to have much more freedom . He was accepted into the community and people would stop him and chat to him as he explored the village . I’m sure you both would enjoy the quieter type of living .

What did your parents want? I presume they told you when they were ill. I am a parent of two children - the younger one has significant needs and will never be independent. The older one has a brilliant degree and is just starting a career. I have told them that should anything happen to me I would like their sibling to live in supported accommodation with people their own age, and carers who will take them out into the community etc. I have heard of good experiences. But essentially it comes down to this: young people need to be with other young people they relate to. You understand this for yourself, you also need to realise this for your brother. He might just benefit from having other people who seem to him to be like him. I understand the need to protect, and you can continue to do this, from a distance if necessary. I hope you have a package which includes respite in the meantime. You are entitled to it.

I was very opposed to SL for a long time until someone asked me why I was so against my brother, in his 40s, having his own independant life? And they were right. Your brother is entitled to his own life, his own home, where he make decisions and choices about his life.

That person was wise.

At the moment your brother is just sitting at home all day marking time, OP. He, and you, deserve better lives. He's only resistant to supported care as he's unable to picture it or know what it feels like to live there. If he goes "on holiday" to.respite care for a few weeks, you and he might be surprised.

Our son is 35, with a learning disability and autism. We made the difficult decision when he was 25 that he needed to live in supported living or residential care. We absolutely didn’t want his younger sister to be forced to give up her life for him when we die or become incapacitated. We stuck to the line that he was of an age to live with others, not with us, and that it was what had to happen.

We saw, through our respective jobs, that when young men or women like him stay at home it then becomes a huge shock and can worsen their health when their parents die and they then have to move into care. If the move happens over the previous years, it gives the young person and their family time to find out what works best and to learn to adjust.

It’s been difficult, but after our son went into residential care (it took a year of visits, discussions, funding negotiations, etc) we had our first nights sleep ever and I wish we had been stronger and done it much earlier. I think that a residential school placement from age 14 or so would have helped him.

We see him every week, and in the residential home he does what he did with us, ie watch tv, play computer games at home, go on outings with his worker and have meals. He lives with five other people plus staff but he doesn’t really interact with them, that’s just not his way of being. But he gets on with it as much as he got on with living with us.

Your brother needs to move out soon and I’m afraid that the ‘perfect place’ for him does not exist. But there will be places that are ‘fine’, places that will suit him, and he will suit them, and you will begin to get a different and a better life.

Please don’t underestimate to social services or others what your brother needs. You sound like a fabulous person and your brother is very lucky to have you, but now is the time for change for you both.

And there are good places - or at least, places that are more than ok. Your brother will adapt and you will have a life. Please do it soon.

🌷🌷🌷

It is clearly a very tough situation and my heart goes out to you. I do have a couple of suggestions

• things may change sooner than later, ie your brother may become more independent or he may make a friend or two, or both of you may find a sharer’s support network, or (hopefully) you may find a partner who is happy to share you and your life in its entirety. Don’t be despondent, hang in there until things improve
• can you reframe and articulate what makes you happy outside of your aspirations around Canada and partner/family needs. It might be tough but what else is positive that you are happy/grateful about. Can you find other other aspirations to replace what you are missing in the current situation. Try to find something positive to replace the negatives