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.

Is there a day service near you he could access?

I appreciate that this will not resolve your situation, but perhaps it would be a step forward for him towards the eventual goal of supported accommodation / respite.

Does he have a social worker? He would be entitled to an assessment of his needs and they could explore different support options.

Are you in touch with your local Carers charity? As a carer you're also eligible for an assessment of your needs which again could look at different options for you.

This is all very well but will still not allow OP to have a life . The sheer amount of life admin she will constantly have to do will be overwhelming .
Children don't sign up to look after disabled siblings , it's too big an ask .

I am going to present another side to this.

I am a retired social worker. I vividly remember a lady coming into hospital after slipping on the ice. She had several broken bones and was going to be out of commission for many months. She was in a terrible panic as at home was an adult daughter with both mental and physical disabilities. I arranged for this young
woman to go into a sheltered flat with other people with disabilities, where she could live independently but help was on tap when needed. She loved it there ... she blossomed and tried out lots of new experiences.
Her mother found this hard as her daughter never returned to live with her as she had been given the opportunity to make a life for herself.
You have taken on a role as your brother's carer and it has become who you are. Maybe it is time for you to give yourself the opportunity to be someone else ... the person you long to be.
And it might just be that your brother needs the chance to be someone else too. Most young people leave home and become themselves.
I am not suggesting that this will be easy, but you do need to reach out to the services that are available and very gradually plug your brother in to what is available. He will find this threatening, but all young people are anxious about change when they start to leave the shelter of their family. It will be harder for your brother but maybe ... and I say this gently ... he too needs the chance to be himself.... to branch out and embrace new experiences.
He is clearly very competent and self-caring; whilst at the same time having emotional support needs. Set out to find these ... there are many options. Take your time ... introduce him to these ideas bit by bit. It will be challenging without a doubt; but the key us to let go of your role ... to recognise that there is more to you. Change and letting go are hard for us all, but the situation as it stands does not have to be all that life holds for either of you.
I hugely admire the sacrifices you have made, but it may be that your brother needs the chance to be something other than your brother and that he too would find new things to enjoy if you started to examine in detail what options are out there.
I wish you every good luck for the future ... but remember this change is not just for you ... it is for him.

@SimpsonWave your situation is so sad and almost impossible. I can only imagine the loneliness.

You must follow your dreams, the resentment will only grow. Please reach out to adult social
care, yes it will be hard but you must live your life and you can still be an amazing sister.

Thank you also for raising awareness of your situation, you won’t be alone in your situation but it’s rarely spoken about. You are an unsung hero and deserve to be released to live your life.

You sound like a lovely person, and extremely devoted sister to your brother.

I am so sorry you both lost your parents while so young.

I agree with others though when they say you deserve to live your life and that you can still be a wonderful sister by visiting him, but he doesn't need to live with you and limit your life to the current extent.

The older he is when he moves into supported accommodation, the harder it will be. How about if something happened to you; for example, a serious health issue that meant some months in hospital or some other thing?

I know two disabled people who live in sheltered accommodation and have carers who really get to know them personally. The two people seem very happy with the set up. One of them has an intellectual disability and the other a physical disability. This is in suburban London.

You sound like an amazing person
if also sounds like you love outdoors/nature

this is advice I would do if I were you

1. choose a ‘naturally’ beautiful place uk that you would love to live. Ideally one well supported by services etc and plan to move there
2. join a ‘open minded’ dating site something like the guardian where the men tend to be sweet/ clever or any other site where people are looking for a genuine connection- you are not spoiled goods you are young and dynamic and deserve your own love/ life
3. potentially see it you can get a trained emotional support dog for your brother to help ( when you have a garden so it’s not a burden) May bring him out is his shell. Or a friendly cat!
4. think of a welcoming social activity perhaps tango dancing / something where fun loving people meet and go there! You need to have fun and broaden your circle

best of luck with all.

Think about it positively re supported living. If he got the right place, it could actually be better for him. He’d have people who could take him out during the times you’re at work. And then you’d also be able to take him out in addition to that.

You’re right in that sooooo many places are awful. But they aren’t all awful and you at least have flexibility. What I would think about is whether there are any limitations on which social services will pay for him. As in, if you move to a new area, will they accept a duty of care if he is previously form a diff area

Simpsonwave, I haven't read the whole thread but I have read all your replies. I've NCed for this but my username tells you my experience.

My brother has autism but wasn't formally diagnosed until middle age. It sounds as though your brother and mine operate on a fairly similar level.

My thoughts can be summarised thus:

1. You cannot, and should not, be your brother's only carer. What would happen if you were yourself ill, or worse? There has to be some sort of back up, even if never used.
2. IMO (and IME) the worst thing you could do for your brother is to do everything for him. You say he would never accept carers coming in -- well, I'm afraid he's going, at some point, to have to accept that as a possibility, so now is a good time to start building up to that.
3. Get him to do as much as he possibly can in the house, so that he has an idea of how to keep body and soul together. My brother has been infantilised and institutionalised by my mother insisting on not letting him do stuff, so he doesn't even realise that things need doing. Don't let that happen to your brother. His main issues may be social/emotional; you can still involve him in doing the shopping and cooking, budgeting, cleaning etc. The shorter term pain of having to teach this (to someone who may well be quite oppositional about it) will be outweighed by the longterm gain of your peace of mind knowing that he has basic skills.
4. Do your will.
5. Are you/your brother claiming all benefits available to you?
6. I assume your brother has a formal diagnosis? If not, get one organised and onto his medical records. Then, if anything happens to threaten your/his housing situation, he will largely be protected by dint of having an enduring severe mental health condition.
7. Does your brother need a financial PoA setting up?
8. Would he need residential care? I hope that my brother will eventually get somewhere in an "assisted living" scheme, which can simply mean support from an externally-based care/support worker who checks in a few times a week. (I'veseen people from Carr Gomm fulfil this role for other people; I'm sure there will be other organisations). We will need to get my bro up to speed on how to look after himself first though, see point 3 above and don't let that happen to your brother!
9. If you work in this field I presume you/your brother have had contact with the NAS? https://www.autism.org.uk/ They were good with my brother, even got him a temporary job, and he learned some social skills from their interactions!
10. Happy to share thoughts further if you want, on a PM. I am not in your situation but have different worries associated with my brother being a lot older than yours.

@hattie43 Families are the people who understand and in general care for people with disabilities the best. Supported housing - that ideal of a great place with loads of quality care, is not that easy and sadly far too many have cases of bullying and neglect. Others have staff that come and go, sometimes with little continuity. It’s not always a good option and as a parent, with DS who could go into respite care I’ve had a look at these and it’s also not great to not feel that your family is being well cared for. That’s also stressful.

Of course the OP can decide not to care for her brother, that’s her right, but she says that she does want to but finds it hard. The best thing possible all around if for the OP to be happy and her brother to be happy living together. That is possible with some changes - and once you have the initial ‘admin’ of getting benefits, carers and a more ideal living situation then think of how they can enhance each others lives.

People with disabilities have a lot to give, there is probably a lot that he gives to his sister and has a lot to give and has value. The OP just needs greater balance to live her own life as well.

I do understand as I have two children who will need care their whole lives. They are now adults. One lives with me, one is in in his own place with carers. It is possible for your brother to live separately from you. It is also possible for him to have a good life. I would gently suggest you have a conversation with social services. I plan for my second child to have moved out by their mid twenties. It will be close by, but it will be separate.

As someone with a brother I'll have to care for when my parents pass, I really truly feel for you. It's not talked about enough either. So much support for people with disabled children but people forget those children get older.

@ihaveanautisticbrothertoo very good advice! Sounds like you are very good at managing living with your brother and have words of wisdom.

To the few people who have responded to my post can I ask how old your children are?

I really, really want you to be right, that there are meaningful ways to plan for the future for those with profound learning disabilities, but my instinct having lived this life for 30+ years and working in social care myself (albeit not in Adult Services) is that you're in for a rude awakening (I don't wish that to sound harsh, again I so want you to be right).

We can barely get Adult Services to engage with us here and now, even when there is a very real issue with my brother's current care package (and this is for a young man who certainly does meet the threshold criteria, I dread to think how much harder it must be for moderately disabled people) - let alone getting them to help us plan for the future.

I already know most of the residential and semi independent places near where my family live, and much like OP's experience they are grim. Constant cookooing and abuse by drug dealers and local wronguns - it's that or poorly run residential homes that cater mainly for 70 year olds who sit in a chair all day unstimulated and unloved.

My strong preference would be for my brother and his lovely girlfriend to rent a small house and use a combined personal budget to get carers in but they're not quite ready yet and I worry the maximum care package they'd be entitled to might not quite be enough to keep them safe (though there are some really encouraging stories on this thread of young people being able to do more than anticipated which is great to hear).

I wonder if the fact my family lives in one of the most deprived parts of the country, with a woefully under performing LA, is colouring my view. The future probably does look much brighter in other parts of the country.

Anyway, apologies for derailing your thread OP. You're doing an amazing job, it sounds like you have the bones of a plan in moving away, I wish you all the very very best for your future!

Ideally the council would put him in supported accommodation.

You’ve sacrificed enough of your life.

I admire your dedication, I couldn’t do it, I crave my own space.

I've told my story on here several times. My brother is late sixties and lived with mum all his life til she died last year in her nineties. Her plan was always that I would look after him for the rest of his life. She made no arrangements for him, despite me begging her to do so, and when she died it was ground zero for social services to find somewhere for him to live, as I made it very clear that he was not going to live with me ever (for many reasons).

Social services found a place for him at a Mencap home. It is absolutely brilliant and for the first time ever he has friends. He used to be depressed and aggressive living with mum, but he is flourishing now. Just back from a steam train holiday. He's got so much more confidence. Please don't rule out your brother living away from you. You deserve your own life too.

OP, do you manage to go out in the evenings, have friends to your house, go away on holiday without your brother?

God, that sounds so hard. You sound like an amazing sister and an amazing human being. Can you get more, help, more support? You cannot give up your life for his. You are still so young. Don't despair. You can still have all your dreams. xxx

Could you start with him having a carer just a few hours a week and increase it very very gradually, until he is no longer dependent on you?

That.

You say that your career involved working with people like your brother. So at some level you must know that spending all day alone in your home is absolutely not the best life, or even close, that he could have.

If he lived in a residential home he'd have peers, he'd have activities, he'd have socialisation.
Your loyalty to him and your sense of responsibility is actually having a negative effect on you both. This is not the life that your parents would have waited for either of you.

You say he won't countenance going to respite care etc. Well frankly, who would if they've not experienced it? It's much like when my mum and my MIL each went into care homes. Of course they didn't want to go, and neither will I if it's in my future, I'm sure. But both of them, once they were there, had a quality of life much greater than they'd have had otherwise.

Your sense of responsibly is making you accept his resistance and give up on respite. But please think of his long term future rather than those first few days of him being resistant or difficult about spending a few days (and then maybe longer) in a residential home that caters for people like him.

Oh lovely, you are so young and have been through so much.
You have had some amazing advice on this thread and I hope you can see that things can change.
First thing to do I to pick up the phone to social services and tell them that things need to change. That you are moving yo Canada and that your Brother needs support.
You will be setting him free so that he can build relationships with others in a professionally supported environment. My cousin and her wife care for 3 young autistic men and they honestly all have a ball together (although none of them initially wanted to move in). Ask about adult placement, it's sort of a fostering arrangement but for adults with special needs.

@Cucucucu can you say what region of Scotland you are in with good adult provision?

So true. DH is a mountain biker and always trying to get me out there but it’s just not my thing.

@SimpsonWave I'm so sorry for the loss of both of your parents ♥️ I haven't managed to RTFT yet as I've just nipped on quickly but from your OP alone my brother sounds very very similar to yours. He currently still lives at home with mum and dad, dad runs him everywhere for his day centres/evening bits etc and when mum & dad aren't here anymore I'll be in the exact same situation as you are and it will all fall to me. I do have another sibling but she's younger than us both and she doesn't really 'get him' and he wouldn't want to live with her. I could never put him in a home either. Just wanted to send you a massive hug - feel free to DM me if you need a chat x

Aberdeenshire

@orangeflags may I ask you how that made you feel towards your mother? I still have anger towards my father that he made no provision or even would allow any discussion of what would happen to my brother after his death. It all fell on me. And apologies to the OP, I don’t want to derail 🙏