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.

You have a huge amount on your plate and must I’m not surprised you feel so overwhelmed.

By the very nature of his autism your brother won’t like any change, but that doesn’t mean he won’t like the outcome. Change is just hard! As an adult, he deserves as much autonomy and independence as he can have, just as you do. He just needs the right support to facilitate that. He also needs the time and space to develop meaningful relationships with others - just like you do!

I know that finding the right services is incredibly hard, I have 2 ASD boys of my own, and often having too much ‘insider knowledge’ can make things even scarier: we all want things to be perfect for our loved ones but the reality is that there will be bumps along the way and it can take a few tries to find the best fit for someone.

It does sound though that it’s time to reach out now for the benefit of you both. I hope you have a friend who can listen to you and support you. If not, perhaps try a service like Mencap to provide a listening ear for you. Or come back here if you like. I’ll always listen.

I’ll be thinking of you both. Take good care of yourself. 😊

I cannot understand this attitude at all! You would be a fool if you looked after your brother?? What?????

It is perfectly acceptable to say to social services “I can’t keep doing this” work with them and find him somewhere long term where he is happy and safe

You're right in principle, Sirzy, though I'd add that "can't" isn't likely to cut it, and may well result in promises of support which will never materialise - or if they do, may be snatched away at the next budget review

Won't do it was the only way I secured effective action, in that it stopped them simply pushing the problem into the future

I've seen halfway houses as you describe but never supported living for those with autism or learning disabilities. I work in adult mental health. If supported living was something you ever wished to explore, I'd keep looking, as I've never heard of what you describe. Generally the residents are very vulnerable and the workers wouldn't allow the block to get like this.

My heart breaks for you and made me realise how hard some people have it. Puts things in perspective.

I would try to get him into assisted living and go to Canada. You could see him say every 3 months - rotate between flying him out to you and you going to him?

And you could FaceTime him regularly.

You’re not a bad person for wanting your own life.

No, I actually meant that they could both move. I doubt if the OP would want to be too far away from her brother geographically.

As harsh as it sounds this . You deserve a life and you cannot be a sole carer for the next 50yrs .
It's a salutary lesson for all parents of disabled kids to make provisions when you go not to burden your other kids .

Also although he’s not allowed in to live their permanently, is he able to come on long holidays to you?

I would feel exactly the same. I don't think there's a magic answer (not that you're looking for one).

I think it's just a case of doing your best to enjoy the little things in life and not giving up on finding someone. Have you looked for other carers, who may understand your commitment to your brother?

He's so lucky to have you, and you him. You both sounds lovely x

Firstly, you're amazing and doing something wonderful.

But it's not sustainable.
I have 2 kids with ASD and a very close family member and you cannot be DB's entire world, you just can't, it's unfair to you both. Hate to say this, but what if you get hit by a bus tomorrow? He's fucked and you've spent your life feeling like you missed out.

I'd suggest moving, definitely.
I'd suggest moving somewhere with amazing autism services, I can PM you which ones I use where I live, honestly I think they'd be ideal and my local area is alright too tbh.

You aren't going to get hit by a bus BTW, but you do need to make changes.
I have in place stuff already for my DC incase their dad or I untimely kick the bucket and fortunately the people we've chosen to be our DC caregivers have absolutely been told that they're to ensure our non ND kids do not feel they're to become a full time carer etc, because it's completely unfair.

If you need a chat about anything, inbox is open my love 💓

Have you looked at Camphill? https://www.camphillvillagetrust.org.uk/
You really can’t spend the rest of your life caring for your brother, I’m sure he would get used to a new way of life.
You could live nearby as you seem open to moving so you can visit.
You might find there are more day and respite services on south coast, look at Torbay area.

I haven’t read the full thread so sorry if this has been mentioned before but are you claiming all the benefits he is entitled to? I will pm you with what that amount should be but he sounds like he is entitled to full rate PIP including mobility. It would allow you to pay someone to take him out in the evenings and free you up a bit and also potentially to get a better house.

Being a Saint to the detriment of your own life is an option the Op can choose. She can also look after her brother by finding him suitable accommodation in supported housing with other young people. She can visit him as his sister not a mum. She can then find a partner and have her own family. Our local vicar adopted 2 Down syndrome boys as babies. When they reached 18 they both moved to supported living and he and his wife got a new Parish near to them and could visit frequently. Their youngest daughter benefited from parents who weren't exhausted. The boys loved where they lived. They were expected to cook and clean and live a supported adults. Loving someone doesn't mean you give up everything for them . There are no prizes in heaven.

As for my concerns with supported housing, in my job I've seen 2 situations this year which have resulted in me raising formal safeguarding complaints through the correct channels. I didn't witness direct harm from staff to resident, but unsafe housing conditions and residents who were clearly a danger to themselves not being in the correct environment and staff not picking up on that. Our city is known for being awful for social care though.

Moving to a different area of the UK is definitely a must for me, as cliche as it sounds I want to move to the coast or the country and spend my time mountain biking! But I'd want my brother to be close enough that I could pop in often, so he'd be coming with me and moving into supported housing in the new area.

I don’t have any practical advice other than to ask if you’ve joined a carers support group? You sound like you don’t have anyone to support you, and maybe just talking about it with others IRL would be a good starting point? It could even be a reason for relocation if you could find a good group in a nice outdoorsy place.

Have you looked into the Shared Lives Scheme? This may be ideal for your brother.

I’d have to dump my brother in supported accommodation and then fuck off

I feel like you need help to deal with all your feelings about this and reframe them. There's a vast spectrum between ruining your life by devoting it totally to your brother and dumping him and fucking off. I know it's so emotional, but that's why you need to unpack it all, so you can process all those feelings and find a way forward that will work for him and let you have your own life too. You sound like a wonderful sister, but ultimately he is not your child and shouldn't be your sole responsibility. It's great that you've aired this now and can take all the advice on board so you won't spend your 30s and the rest of your life feeling this same way.

@SimpsonWave you are best placed, in that case, to assess and monitor his situation in a supported housing or assisted living placement.

You sound amazing OP. I’m just sharing a link to this book incase it’s helpful https://www.amazon.co.uk/Personalisation-Practice-Supporting-Disabilities-Transition/dp/1849054436/ref=nodl_?dplnkId=71fb89b9-5ae2-42cf-ab25-53e957120891

My previous manager wrote it, she has a daughter with Autism and she worked to a create an independent supported living arrangement for her (daughter has a flat and carers). I don’t know all the details but my manager is very involved, organises the recruitment of carers, her daughter comes home regularly and the holiday together. But they aren’t living together 24/7 which has been really beneficial. This is just a book about how they did it in a person centred way, with a personal budget. If you got to a point you thought that’s an option but don’t want to leave him somewhere not tailor made for him.

This sounds like a good plan. Move to a beautiful area with lower cost of living and good quality supported living services. Maybe this thread and/or your work contacts could help you identify places.

My degree was OT, but I manage a LD care home.

Have you thought about shared lives?

Do you get a direct payment. A mum whose 'child' comes to us for respite recently explained that having her son in his own flat, getting a direct payment 3rd was a life saver for her because it gave her a chance to progress her career, focus on her own life whilst ensuring he had the correct staff, she picked them in place, down side was sometimes when the staff were sick she had to cover or he came to us in a emergence for a few days.

There are options out there and you shouldn't put your life on hold.

There's no shame in admitting one is out of one's depth. We're all different, all unique, and some are better equipped to cope in challenging situations than others. Indeed, admitting same is to be greatly admired/respected.
We do have a responsibility to loved ones, however our first responsibility is to ourselves. We're all allowed to be happy, and if caring is being done with any martyrdom, the carer will never be happy (and nor will the cared for).

Also my sentence in my OP about not wanting to 'dump' my brother in supported housing, I really hope I don't upset anybody with that statement. In that sentence I didn't mean I look down on anybody who has a loved one in supporting housing, I just meant I would feel awful moving to Canada and leaving my brother in supported housing in the UK with no family to visit him. The word 'dump' was used very specifically to mean that situation, and not having a family member in supported housing in general. I was upset writing my OP and maybe didn't think about how I was sounding

We are in the same situation my sister is 32 but the age of a 12 year old. I moved to a nicer part of the uk with her which instantly made a difference to us both financially my burden became less as rents etc are cheaper and she will go out walk the dog etc now as we are in a lovely little community. I couldn't put her in supported care. I eventually got the courage to apply for pip,esa etc for her as I did plod on alone. We now have a motability car I can take her out in so we do much more and now able to take holidays etc. Yes I thought i wouldnt meet anyone and 3 years ago met my now hubby. Made it very clear from the start about my sister being with me and how that wouldn't change. And now we have 3 children under 3 who my sister adores we all get on really well my hubby works now instead of me and yes just trying to show there is a way to go and things can become better. Feel free to message 🙂

It sounds incredibly hard OP, but the realty is you do not have to have your brother live with you. There are sheltered accommodation arrangements for people like your brother.

You can visit him, take him on holiday, be a great sister. You do not have to be his mum.

I would contact the autism charities for advance as a starting point, and I would make a firm plan to make sure he moves into sheltered accommodation in 6-12 months. YOu will have to be quite focefil because you are doing social services job for them, so talk to the charities about how to get an advocate.

He may take time to settle but he will.

If your parents hadn’t made arrangements for his care they have been very neglectful I am sorry to say.

Please don’t continue to give up your life like this, it’s is not necessary and you are going to really really regret it. Don’t be back her in 20 years talking about how badly you fucked up.