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.

Please go , I did something similar to you 30 years ago and I regret it every day , I put my life to one side and put the care of another first , a big mistake, other family members did less and I lost out big time in my personal life

I would encourage you to contact adult social care for some support and advice, is he known to specialist health services?
Does he have capacity in regards to his care and support needs/ accommodation decisions?

it sounds like you need a break from your caring role, are you known to the carers support team? Can they offer any support?
you also need to consider what would happen to your brother in an emergency?

you cannot put your life on hold for your brother when support is out there! Sometimes you have to be cruel to be kind. Your brother needs to live his life the same as you do!

OP this sounds so hard and you sound like you're doing a great job with limited support for yourself. I really recommend reaching out to Carers UK. They can help you see what additional support you and your brother are entitled to for example he should be getting benefits if unable to work which will lighten your financial load, they can also help you access other support like respite. They have a great website and helpline to reach out to them through x

In York there is something called The Blueberry Academy, They provide specialist support for young people and adults with learning differences, autism, social, emotional and mental health needs and/or other disabilities. The main aims of Blueberry are to promote employability and independence, offering education and employment services in York, Selby and Scarborough as well as Personalised Learning Programmes for students aged 16-25. Might something like this be a help? It can’t be the only way one in the country.

I wish you lived near me in Essex. I work in an enhanced support housing unit.

our clients have their own flats, and as much independence as we can help them achieve, we also give full care and support to those that need that too, including personal care and meals cooked.

Look around for smaller independent living homes. Not care settings. I promise you that a lot of us care about our clients like they’re our families.

That's what I would do too.
You and your brother could both be happy if you did that.

Just be careful..moving somewhere rural or coastal does not mean services are better and you can be more isolated. I still struggle with your conviction that support series are all poor and not worth considering yet you are happy to leave your brother on his own and quite isolated as you go to work. I realise you are working hard and feel very frustrated but are determined not to look at a broarder range of ideas.

Posting to remind myself to come back and write tomorrow. I have set up a small Supported Living provision for my brother, and have my own family life also as I know he’s taken care of. Happy to discuss more.

My middle child will need lifelong support.

If asked, he'd choose living with us for ever. But once he gets to 18, we will put him on the pathway to supported living.

And one day, he will prefer to stay in his home, wherever that is.

I have two other sons and they deserve a life.

In your position, I'd tell SS you are emigrating in a year and instruct them to start the process of finding your brother a home where he will be safe and happy.

I think @Superdupes has it. It’s worth mentioning I have an autistic DD myself. Not in the same boat in terms of future outcomes but I understand your concerns around change. It would be a binfire in the short term, I understand that. It would also cause your DB significant short-term distress.

But. I think half the reason you’ve posted on Mumsnet is you need a mum to talk to, and without your own, you’ve got a panel of them here. This situation is not sustainable, and your mother would never have wanted you to sacrifice your own future family. I suspect she did expect you to step up in late middle age, which is quite an ask, but this is a whole other level.

Sorting your move at the same time as you sort your brother’s means there is no chance of him going back to your own home, and he will see it is final / irrevocable. It also will help you to present it as a fait accompli. I know you are so tired, but think where you want to be this time next year, and push to make it happen. Be your own advocate.

OP a few years ago I worked with a woman whose son was autistic and had some other conditions too. She pushed for him to be in supported living and to get everything he was entitled too, she encountered quite a lot of pushback and resistance and actual unpleasantness from various local authority managers, who were virtually accusing her of dumping him into their care, However her point was that setting up these arrangements now were in her sons best interests and meant that when her and her husband died, he was already set up and cared for AND it meant her two daughters wouldn’t have to deal with it (sorting care, I’m not calling their brother “it!”) she was a really formidable advocate, they are an amazingly close family, he regularly spends time with all his family, goes on holiday etc but his day to day home isn’t with them. I know you’re not of an age where you need to worry about your imminent death OP but maybe this is a way to look at it, you’re not dumping your brother, you are setting him up to live a life which is future proofed! And because of your skills and knowledge, you are well placed to be a really formidable advocate too and get him a set up which really optimises his quality of life, independence and enjoyment.

I also want to add that I believe you should go to Canada once your brother is settled somewhere and do this while you are both still young. Go there and have a wonderful time. Take the opportunity to go now while you still can. You can always return.

I think a move within the U.K. makes perfect sense , once again Scotland could probably offer you the most help with care ( mostly the Aberdeenshire area ) . Personally I would never put my son in a residential as I’ve seen enough horror stories but I’m hoping the future will allow him to leave partially independent, hopefully in a anexe to our house or in a small garden home in our land . I’ve notice as he gets older his little sisters drive him bonkers at times , although he adores her so he likes his own space . There are non residential placements here too , a local place offers day places for adults with autism and Down syndrome, they are wonderful . You can also with time get a carer to give you some respite if you need a holiday alone and time to yourself .
Either way please do not assume you will never find love , there are some good men left who will love you no matter what .

Can I ask those of you who have been through the supported living route - do you/your loved one pay for it from e.g. their benefits? The threshold seems so high where I live about who qualifies for supported living so not sure how the whole thing works

Personally I would never put my son in a residential as I’ve seen enough horror stories

It is NOT all horror stories. Some of the facilities available are good - OK you might have to put in the leg work to find the best solution, but it is out there for sure. Look at this link: https://www.autism.org.uk/what-we-do/adult-residential-services/supported-living Local authorities also run similar, as well as other charitable organisations. There is finding available.

OP's brother is very high functioning physically and practically and some sort of sheltered accommodation would work well for him I am sure. The longer he stays under his sister's F/T care, the longer it will take him to adapt to something more independent .... which is something he deserves; and the OP very certainly deserves to have a broader happier life.

My nephew runs a facility in Devon which gives the residents independence coupled with support.

I do not underestimate how difficult the initial stages might be and it takes courage to plunge in with it. But the rewards could be great for both.

@Fraudornot yes my brother is funded through his benefits and the local council. He has never worked due to his LDs. When he lived with mum his benefits were sorted by her, and he obviously didn't pay for housing as he lived in her house, he has minimal savings. I'm not involved at all with his finances now, although obviously buy him things as any sister would.

Cucucucu

Personally I would never put my son in a residential as I’ve seen enough horror stories but I’m hoping the future will allow him to leave partially independent, hopefully in a anexe to our house or in a small garden home in our land.

Can I ask who you are expecting to look after your son if something happens to you and/or your husband? Are you expecting your daughters to do this?

It looks as if there are quite a few schemes where people have their own flats - but are also supported and provided with a community. This isn't the same as a 'residential' - a good system for the right people.

(Not the 'right' people - people who it would suit, I meant!)

No , I have a will in place and a life insurance that should cover for his care . It will hopefully be enough for him to stay at home and not need residential care .

@Cucucucu are you saying that you’re leaving him the financial means to pay privately for carers? Is he able to organise that for himself? If not who would put that in place? Xo

Probably one of his sisters or another family member ( oldest is only 7 so too young for that at the moment for me to make that decision ) , it will be left as a trust currently the trustee is another family member . Moneys are left to all the kids but his part is much bigger ( for obvious reasons ).

I won’t lie I would be very disappointed if his sisters did not at least help with the legalities , but I do not expect them to have to physically do anything for him or give up their life’s at all .
Of course it would still affect them, if anything financially in the sense they won’t get as much of an inheritance or a house as it will be left for him to live .
To be honest we are not originally from Britain and where we arte fro family always helps each other . If none of them wanted to help with the legal / financial side , I’m sure someone would .

Suspect you're going to get some stick for this but I'm really not sure what else you can do.

Good luck!

OP, you sound so lovely and are an amazing sister.

We do only get one life though; you're not responsible for your brother. I don't have any practical advice, just wishing you all the best.

When mum died social services floated the 'idea' that my brother stay in the house alone with carers coming in. I pointed out that he would need 24/7 cover because he was prone to start fires, take himself off for long walks whilst leaving the from door wide open, and invite random people to do unnecessary works on the house that he had no way of paying for (if someone ever rang up selling something he would ALWAYS make an apppintment for them to visit). He is a whirlwind of trouble on his own. No insurance company would insure a pyromaniac living unsupervised.

Social services said they would provide 24/7 cover. The next day they said, well as there are no cares available we will get someone to visit 4 times a day...

After a couple of weeks a carer found him collapsed on the living room floor after he had had a stroke (alone) and it was finally agreed he should go into a home (which costs over £2,000 a week). I could do nothing as I was in hospital with pneumonia myself. The moral of my experience is please make plans.