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 wonder if you can adopt him as your child, since you are his parent now. I dont know if that's possible. Then you can get a job in Canada, it's easier to bring your own child along, even if they have a disability than a sibling. Something to look into. I hope you can achieve your dream of going to Canada.

Speaking as the parent of a 21 year old man with severe learning disabilities and really unable to look after himself with personal care I can really sympathise with your situation. I am at a point now where all my friends kids are growing up and going away and their parents are able to go on holiday and live a free life and I feel like I'm still stuck with a toddler. At the same time, I love him so much and it breaks my heart to think of him being unhappy in cared for accommodation or without me to look after him. But at the same time I do realise that at some point his dad and I will die and he will be left without us. Therefore he needs to start to get used to being without us some of the time and maybe eventually to move into other accommodation. I can't really face up to that yet, but what he has started doing recently is going for one or two nights respite. It gives us a break and also it is a start for him to get used to us not being there all the time. Although you would feel guilty about not having him live with you, you might not be able to look after him forever and think of the shock and the struggle for him if you were suddenly to disappear from his life. Therefore I do think for his sake you should start to try to wean him off you a bit and on to accepting help from other people.

How much support have you got in place for your brother? Have you had a social services assessment? Does you brother have any carers who come and take him out. He should be able to attend day services / supported jobs etc. He shouldn't be at home all day by himself - social services need to be putting things in place. You might be able to access care in your own home for someone to stay overnight with him while you go away. If you can manage to get respite that would also be a start. I was told by social services that there was no space in respite because of covid for two years and eventually I rang the respite home direct and they said they did have space and my son was able to get in. I know it's different in different areas, but I do think you need to explore all the options - life is hard as a carer but you need to access all the help you can get for both your sakes.

I hear you. I became the sole carer for my brother who is autistic with a moderate learning disability when our mum died. She never made any plans for him because she was in denial about how severe his needs were. Like your brother, he can do his own personal care (when prompted), and can make simple meals (but really should be supervised to be completely safe), he can talk for Britain with me, but he has no social skills and has terrible anxiety around other people. We get no outside help. Social services take very little interest because he has me. He's not "bad" enough to be put in residential, but he's not safe to live on his own. He doesn't even realise it.

It's really shit. The lack of freedom. You can't just take yourself off for a week when you feel like it. Potential partners don't want someone so restricted with their time. You see everyone else around you living their lives whereas you're only living for his. Then there's the resentment at not being given a choice. And the guilt felt over that resentment. And the shame you would feel about "dumping" him.

The only thing I can suggest is try to make time for yourself. Try to remember that you are important too and that you do matter. Maybe you can negotiate going away for a year? Arrange for him to go into supported accommodation, or get carers to keep an eye on him, and try to get him involved in some kind of activity so he has a reason to get out of the house. Maybe something like a gardening course one evening a week at a local tech (if that's still a thing post-covid). Good luck. I wish there was an easy answer.

I actually know a lady who is 89, whose autistic son still lives at home with her. He is now 61. No provision has been made for him when she dies. I do not know what she thinks is going to happen

Strange you should say that, TheShellBeach; I have mates in their 70s - son is 52 - doing exactly the same

The really ridiculous thing is that their DS was once in supported living, but he had a row with one of his housemates and instead of supporting him through it they just took him home with them. This "temporary" solution's been going on for 7 years now and nothing's changed - and probably won't until they die

Would a first step be finding a PA agency that can have someone come in while you are there to get to know him, then having them come in while you are not there (or for you to pop out for 10 minutes), and then for them eventually to help him do things in the community?
It does sound like he needs support to access the community, and to make peer friends.

Hello

I just want to say that I now work in supported accommodation for people with autism and I adore it. People have been working there for years, we know the guys very well, we all genuinely care for and like them, and we get good ratings. I really think your brother could end up very happy in a good home, freeing you up. It may involve a transitional period of time, but it's ok for him to blossom and live his own life, and the burden of care doesn't have to be yours alone. X

I have been a carer op and it nearly killed me. 18 hour days.
However I can tell you there is help out there. You need a care assessment and support package. My dad was entitled to 8 weeks in rest bite. No one told me until the last few months of his life. He loved it! I was entitled to treatments etc.
I have a friend with a special needs brother (downs). He lives in supported accommodation and has an active social life. Her sister looked after him in covid but he wanted to go home. They offer lots of activities.
It is a lot to take on and I understand it would put some suiters off but there is nothing wrong with you having a social life.
If you do move pick somewhere with a mixed population. Sleepy retirement locations will have all their support funds used up on elderly care. I have found the posher the location the less help we got. Good luck.

In a milder form I am experiencing the same, brother has mental illlness ( lifelong) plus probable autism/ dyspraxia which my parents, especially my father and his fear of the stigma of difference never allowed proper diagnosis of and treatment. Mum died suddenly at 54, dad died at 83 with brother living at home with him. He’s gone into a tailspin, had a psychotic breakdown and has been in rehab for 9 months where finally they are unpicking all his various disabilities and needs. Like some PPs I am angry with my parents, especially my father for sticking his head in the sand and believing in a fantasy of independent living/ being normal. He made no provisions whatsoever nor allowed any discussion of him being unable to live independently. I’m Bro’s next of kin and really the only relative involved with him and it is very stressful at times, but at least I had time to make relationships, get married and have kids. I strongly believe you have the right to as well and your brother transitioning to more outside care/ supported living is in no way a failure on your part, but could be a positive move for him.

I think the priority is supported living for your DB. The reason he is too able for supportrled living is because you look after him and he doesn’t do anything.
I would imagine he would be angry, anxious, stressed if left trying to live alone and would be moved to some sort of care rapidly.

i live in rural Scotland and there are some supported living places. There is a Camphill Community and perhaps with your skills which are greatly needed in the area, . your DB could go on the waiting list (I presume there is a long one). You need to start making enquiries.

Exactly, you can’t pre-book things, but you can have clear family conversations, do the research to lay a plan down - talk to social services with your non-dependant kids so they know how to involve them, visit several home options so you’ve established relationships, build a relationship with support organisations so there is advocacy support, have all the options on file and kept updated.

It is also best to have your dependant adult kids move out long before you die, so your dependant kids don’t have to deal with two massive stresses at once, and your your non-dependant kids don’t have that move landing on them. Obviously you might die earlier and more suddenly than expected in which case you get a pass on the last bit, but the rest holds true.

Parents who don’t do this are doing a very poor job, and doing all their kids a disservice.

OP, I've not read the full thread (someone may have mentioned it) but have you heard of or considered the shared lives scheme:

https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/shared-lives-schemes/

This sounds like it will be more fitting for your brother than sheltered accommodation.

I don't feel you should give up your dream. Get to Canada, get citizenship, sponsor your brother.

You are such an amazing person. I am going to think and reflect before posting more but thank you so much for sharing.

I've nothing to offer this thread except you are the most awesome person I've ever encountered.

(at the moment it’s a canal a few towns over, every single fucking day)

This really made me laugh. (With you, not at you.) You've made my day better. But you do too much making other people's days better as things stand.

I’d have to dump my brother in supported accommodation and then fuck off leaving him with nobody

Please do this. You'll be making one life worse, but making your life plus the lives of the children you could have better. That's a good trade. If he had been born 'normal' and understood the situation he'd be begging you to free yourself. The last thing he would want is for you to trash your life for his, he'd be devastated. Imagine you knew tomorrow an accident would befall you and force someone you loved more than anyone in the world to give up their dreams to care for you. Would you want them to? Of course you wouldn't and nor would he if he could make an informed judgement.

...and yes, if you really have to maintain this life move somewhere you love. A Scottish Island, the Lakes whatever. I'm convinced that will improve your life.

Very best wishes.

The problem is that it's too risky for you and your brother if you are his only carer. Imagine if you were hit by that bus - he would then have to go into some sort of home without any preparation at all. That would be devastating for him.

You are a real hero and your love for your brother and your sense of duty really shines through, but your frustration is what hits me. You really have to do something so that you're not responsible for him. Yes, you're responsible for making sure he's somewhere safe where he'll be cared for, but you shouldn't sacrifice your own life to do that.

Hi OP, have you thought about Northumberland as a location. Only a 40 minute drive into Newcastle and has beautiful scenery and beaches. Plenty of walking and cycling, truly beautiful and friendly part of the world. Being close to a city could give you the best of both worlds and great access to facilities for your brother. Also, having had family in that area that needed care the hospitals and some of the facilities I visited were very good.
Id highly recommend it.

Just home from my daily visit to DB's favourite spot. We pass through a small car park to get to an embankment of a canal and he likes to observe how the stream around there runs into into the canal. and then talks about it the whole drive home. His special interests usually work on rotation, it was Coronation Street last time!

PS: I'm willing to bet that a Woman who genuinely likes Mountain Biking is going to have no shortage of interest from Men and opportunities to meet men. Genuine shared interests in couples are not as common as we might like.

@SimpsonWave I have sent you a pm

I agree with this completely

Think about moving to NI. There's a foreign border (with Ireland) and a lot of natural beauty. And canals.

Gosh, like others, have autistic DS and he has a brother. Like many parents, our worst fears are what will happen to our kids when we die. I guess if there is any way that you can make this work better for, and still live with your brother then that would be amazing.

Supported housing, good quality, isn’t that easy to come by. Nor is respite care. But it’s not impossible. Get benefits, social services assessments.

There are also ways that within your home that you can both be a bit more independent. I’d look at a grant - contact charities like Cerebra - and look at disability and carers allowance. These can enable you to pay people to come into your home and provide some input. You could create either some ‘rules’ or parts of the house off so that in preparation for a partner you could have regular evenings out or in with some privacy and space.

What are his hobbies? What does he like doing? I know a few really amazing single male friends who help out with autism type activities like horse riding - so it may be a way to meet lovely men who will definitely not be put off by your brother! 🌻

Actually, there's a glorious canal just up the roar from us, OP! And our DD's husband had a wonderful time, mountain biking here, last time they came to see us.

Up the ROAD, not up the roar.

FFS when are we getting an edit button?

Can I just start by saying you are amazing and your brother is so so lucky to have you.

Whilst I am not in your situation yet, one day I will be (I’m lucky I have 2 other siblings too). My brother is Autistic and has complex special needs, mentally he’s like a 18 month to 24 month old child, with the same interests as that age group but with a man’s body. He’s incredibly social but can also have mood swings and gets very fixated on things and obsessive. He currently lives with my parents but they are in their late 60s and 70s and there will come a time he has to come and live with us adult siblings. Like you we’ve seen what happens behind the scenes in a lot of residential and supported living places and want to try and keep him at home.

As you are your brother’s only sibling and family, I can’t even imagine the stress that must cause you. It is really hard having to give up on opportunities for your siblings. Like you, my youngest brother has always wanted to move to Canada but knows realistically it’s not possible as he needs to be close to my brother for care. My sister is also a healthcare professional and would love to work in Australia, but won’t for the same reason. My brother in particular really struggles with the thought of looking after my brother, he wants to do it but at the same time gets really upset on how it restricts his life. He’s your age too and has in the past been dumped because his girlfriend didn’t want to be tied to having my other brother potentially living with them in the future. Luckily he’s now found a girlfriend who’s very accepting of my Autistic brother and she’s very good with him.

Does your brother have hobbies? Near where we live there are quite a few places for Autistic adults (unfortunately my brother is too severe for them as he needs 1-1 care and just isn’t at their level) however they sound like your brother would be a good fit for them. One is a garden centre which is run by disabled adults with a full support staff. They can get involved with growing the plants, doing basic woodwork, serving customers, even making jewellery which is sold from the garden centre, having roles within the centre which interest them. There is also a farm nearby with is run for disabled adults. They can help with animal husbandry and other things. We are also on the coast and there is sailing for the disabled, horse riding etc too. A lot of these things like riding and sailing take place at the weekend too, so if you have things like this near you, you could initially accompany your brother and ease him into meeting new people and over time he might forge friendship groups. In time this could maybe free up more time for you and your hobbies.

I’m sorry for rambling on, I just wanted to say I hear you, I see you and to a certain extent I understand what you are going through. You sound an incredible person and I am so so sorry you are in the situation you are in. I desperately hope that one day you find your person, that they accept your brother and are willing to share their life with him too. There are lovely men out there who would be happy to do that, because you sound like you are worth the effort 😊.

Have your parents not made any provisions for you and your brother before they passed away? I understand it was unexpected, but is there no house, money, trust fund or anything at all that would allow him to access specialist support which may improve his ability to live independently? It doesn't sound like it's completely impossible for him to be independent, albeit with support in place. But that's very different to you looking after him daily.

OP, I think you feel the guilt and sense of responsibility for him but you take it too far. Nobody's expecting you to sacrifice your whole life for him. If he can be more independent, he should be because you don't know if you're always going to be able to support him either. You cannot bank on this, your parents were clearly hopeful they'd manage to look after him for longer but you cannot predict the future.

I also think moving to a place where you'll have limited ability to meet new people that you could date/settle with is a bad idea for you. Think more like Exeter or thereabouts, nice, close to the coast, but still lots of people your age and not too overwhelming for your brother.

Your brother needs to be in supported accommodation and you need to build up a life for yourself and continue supporting him.