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.

Also, the reason i'm posting on MN in particular even though i don't have kids is because I know many on here are carers for their own special needs children, and I thought may understand how hard it is

I don't know what to say except that sounds exceptionally hard. It's not just about emigrating, but what about your own shot at relationships and a family of your own? Is there any hope for supported accommodation for him and for you live nearby? It's not fair for you to give up your life entirely.

I don't know what to say to make you feel better as I've never been in your situation, I'm very sorry you are suffering.
Are there any online forums or in person groups you can join? Or respite days? I'm sure there are others in very similar situations and feeling similar to you, is it possible for you to reach out to others for someone to talk to in real life?

You sound so lovely and your brother is very lucky to have you. It doesn't have to be supported living or nothing, have you considered some support from Adult Social Care? They could provide him with someone to take him out to his special interests or maybe even some respite now and again so you can have a holiday?

I do want children and a family, so much. With that I'm just hoping I will meet somebody who will be understanding about my brother and would be happy to settle down with me anyway.

I'd consider supported accomodation but only if a very good standard. I visit a lot in my current job and there's so many I wouldn't want my brother in - awful conditions and unpleasant staff.

I know I need to give up on Canada, because I’d have to dump my brother in supported accommodation

Regardless of what happens to your Canada dream, looking at supported accommodation for your brother is worth thinking about. Given his level of need and your relative ages it would give both of you the opportunity for more independent living and should be funded by the local authority. It would be better for him to look at it in a planned way, rather than through necessity if you were to become unwell and be unable to meet his needs. He would cope with the transition more easily when he’s younger and you could visit and have better quality time with him.

You sound lovely, and you deserve some quality of life too. Do you know what your parents future plan was for him?

Go to Canada. You need to live your own life and find love, have children, pursue adventures. You didn't bring your brother into this world and he's not your responsibility. Don't let him drag you down and ruin your life.

Respite care seems impossible to access and he's also awkward about accepting it. I've tried to find him the services that I offer as my own job, but from another unrelated professional, and they just won't have it. He doesn't seem to be severe enough to access the real support.

Can I ask, what happens to your brother when youre at work? Does he have someone with him during the day, or is he able to be on his own?

If he has a carer, is there anyway of increasing the hours slowly, so that at least you can go out a bit more on your own?

I was going to suggest moving to somewhere else in the UK short term, to a nicer area than you are now, and maybe specifically try and find somewhere with groups who help with adults with special needs, where he could perhaps go and socialise with other similar adults, so that at least you get a bit of a break?

I have an older daughter (teen at the mo) and a younger son with autism and this is my worry for when were no longer here. I really feel for you.

It sounds really hard! I think you need to contact your local social services and ask for a care needs assessment for both of you.Do you think your brother would accept going to day services day one morning a week, then build it up from there very slowly? You might be surprised at how he adapts. Hope all goes well. X

This is very sad - but he is not your responsibility. You are just one person. What if you got hit by a bus tomorrow - what do you think would happen then?

You need to get him into the system, and that may mean you have to declare a crisis situation. Otherwise, the drip, drip, drip will wear you out. You need to confront this now.

I'm so sorry. It's very hard. But you need to build a life for yourself. I'm sorry your parents weren't more proactive, and didn't plan for his long-term future - but I guess they thought there was plenty of time.

You can definitely have a family of your own, and your own life.

Go to Canada. You clearly love your brother very much. He is not your responsibility though. You shouldn't feel guilty at all.

If you want to have a family you need to realise that it's very unlikely you will be able to do so whilst still living with your brother. It is a lot to ask for a potential partner to live in that situation and then also raise children in that situation too. I can imagine you may find someone willing to accept it at first but I think it would likely lead to tension one day down the line.

I wish you the best and I'm so sorry you're having to deal with such a tough situation.

My parents I think were just hoping that over the years, despite his autism he'd still mature a bit and become more open to supported accom. They certainly didn't expect to die when they did and I know they wanted me to have my own life. I think it their heads, they expected to be going another 20/30 years and that they'd have my brother for that time. I'd have my life in the meantime and then step-up when they went, but they presumed I'd have had my relationships and kids by then.

I'm sorry, it all sounds really hard...
Have you considered supported lodging (as oppsed to living)? I don't know if it would meet his needs but it is certainly something worth looking at. It's normally organised through adult services - basically he would live with someone/couple/family as a lodger but with extras negotiated to meet his needs - perhaps help with shopping, budgeting, house and guidance with personal care etc.it is something I am seriously considering getting into once my youngest leaves home in the next couple of years as it seems so beneficial to both parties.

If it works it would give you your life back but also allow you to stay connected with him.

I really hope you find a solution soon.

It sounds really tough. Could you get a live in job at a supported living place that your brother gets a place at? Or he could live in and you could stay a few nights a week? Canada sounds unrealistic I'm afraid, but there must be tonnes of other places you could go that would be better than your current situation. Maybe even other countries you could emigrate to?

He stays home alone when I am at work. He can cook basic meals for himself. He refuses to go out on his own, it terrifies him.

His issues tend to be mainly social. He'd cope in supported accomodation in the sense of feeding himself, washing, sleeping etc. But going out for a food shop? God no. Having a staff member come in? God no.

You wouldn't be dumping him in sheltered accommodation. He needs to live somewhere where he gets support, you can't be his whole world, it's not your responsibility. You can support him while he is in a new sheltered accommodation and he can have friends and life of his own too.
Really your parents should have thought ahead and sorted this, not drop it in your lap and hope for the best, you do deserve and life of your own.
Whether he lies it or not it will be in his best interest to do this. Hard as it may be it will be better in the long run.

Thank you for every single one of your responses to far, you're already helping me much more than you can imagine. It gets so lonely

Wherever you live, you can’t keep being everything for your brother. To start, it isn’t a good idea for him because something could happen to you and he wouldn’t have any kind of support system in place. More immediately, it isn’t fair to you. You can’t do this indefinitely. You deserve to have free time, to build relationships, and to have the option of children.

you aren’t going to be able to
emigrate, but you have a highly portable career. Look for a place with cheaper housing and good support services. If you aren’t ready for residential care, look for a day program. Having that link to support will mean that he has people he is used to being around. It might help to better align his downtime and your own which will give you more of a mental break.

You are literally NOT your brothers keeper !

He is an adult and as such the responsibility of the state . So you do not have to 'afford' anything !

I know you want to. That's a different thing altogether but you are effectively letting those who should care for him off the hook and doing it all yourself !

Seriously, they would have to be providing supported accommodation, carers etc etc ..

Therefore on the basis that you are already doing adult social services a massive favour - they can support you in this or throw your toys out the pram and make sure they step up or you hand it ALL over .

You need to get tough if they refuse .
As a minimum you should have regular respite . Someone he gets to know who will come and stay with him whilst you take a break. Or suitable respite accommodation that he is introduced to on a very gradual basis, so that he is comfortable and familiar with it .

Befriending. This is a service provided by SS for people like your brother . They take him out, do age appropriate things with him socially .

Expect push back .. we have nothing . We don't have resources etc etc... stand firm and tell them to help or you will break and the entire care package will land on their lap..

Time to her tough OP.. you cannot go on like you are. The stress and resentment will build until you won't be able to help him anymore.

So many carers in your position left to fend for themselves.

Have you claimed EVERYTHING for him ? PIP ? UC if savings under 16k ? Single person discount on council tax ? (little known and non means tested exemption for people with impaired mental capacity )

It’s great that you are so flexible in where you can live. I would start by researching the best supported living places in England and then think about moving close to one of them.
You really deserve to live your own life and not spend every evening looking after your brother.

This must be so difficult and lonely for you, l can imagine how trapped you feel.
I admire how you care for your brother yet at the same time you are entitled to a life of your own.
What l will say is there are other people including men in a similar situation, maybe some sadly widowed with young kids etc, they are probably facing similar challenges.
I am a widow. I lost my husband quite young, and then my Dad who l was very close to, l joined a couple of bereavement forums it made me feel less alone and it opened my eyes as to how many others were struggling with similar issues. It might be possible to start a friendship or just to have others who can relate.
You've had a rough ride and l hope life is much kinder to you, you deserve it.

Much as you love your brother, if you don't live your life you are going to resent him eventually. Better be a sister who loves him for life but isn't there 100% rather than a sister who is with him 100% but resents him. You are doing neither of you any favours with the all-or-nothing approach.
Find the right accommodation and support him from a distance. It won't wear you down and will be with him for life without resenting him.
Canada might be a stretch but if you strike the right balance you could have the life you want here in UK - maybe in a different place.

I can’t give you any advice, OP, I don’t know anything about this kind of stuff. But I wanted to say that it sounds so difficult, and I think you’re amazing for having done all this until now, but I absolutely don’t think it’s fair that you should have to resign yourself to this being all there is in life for you. I really hope someone can help you find a way of getting some support. Legally and morally, this is not all on you.

Your brother has a right to ‘enjoy’ his life as much as he can - but so do you. His needs do not trump yours, just because at the moment you are the only person he will ‘allow ‘ to fulfill them.

I think you need to start weaning him from his total dependence on you, because with the best will in the world, one day you might not be there to carry him. What would happen if you became ill or had a nervous breakdown from the stress of your unnatural lifestyle. The examples you give are heart wrenching but if you were in hospital, he would presumably have to let a staff member come in …..or what?

This is too great a burden for one person, my dear.