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.

What a lovely sister you are. And my goodness what a lot of hardship you’ve been through at such a young age.

It’s ok to give yourself permission to want more for yourself. Please don’t think of that as being selfish. None of this was through your choosing but you have the integrity and dedication to do it all through love.

But I think you need to think of yourself as your brother’s sister, not as your brothers carer.

I live abroad now but when we lived in the UK a local college used to employ adults with additional needs in the cafeteria. I believe most lived in an assisted living (sorry not sure of the correct term) apartment complex not far away. So there was a bus that bought them in / took them home. It seemed to work very well (albeit from the little I actually knew about it). Perhaps in time something vaguely similar may be possible for your brother.

Look, nothing in this world is fixed. You do have the power to create options for yourself. Start believing that and I’m pretty sure you’ll make something good happen. There will be alternatives. Other posters on here are way more knowledgeable about pushing for support than I am so I can’t comment on that… but there is really nothing worse than feeling you have no options. Ok so Canada might not be realistic right now, so park it (don’t let it go completely) but focus on finding other options so that you have choices. I’m sure there are some, you just have to find them.

If you’ve coped with all you’ve had to cope with and are still standing, I’d say you’ve got all the right ingredients to find a way forward. It might not be easy but I think you can do it.

I am so sorry you don’t have anyone in real life championing you along in this. But I am - a random faceless stranger on a forum. I sense there is more to life for you. You will find a rich and full life that somehow complements your role as sister to your lovely brother. I’m really cheering you on to find space and room for your own life.

Best wishes op.

Ps. It’s a total myth that you need to settle by 30, you’ve got plenty of time.

Hi OP I have an ex colleague who never married, he'd down 2 jobs one a 3 hours commute from home 5 days a week plus evening and weekend work because her brother was unable to work. He wasn't registered with a doc etc either so he received no help and no benefits. Please don't get to 50yo and look back to wonder what the he'll sort of life you have, like she did. Go to Canada, take him with you, it wo t stop you moving out there, sure it'll be harder on you but as his carer, it should be permitted.

I wish you luck, you've been given a dodgy hand if cards, but don't ever feel that's it, you've lost. You haven't.

As the mother of a child with special needs and other children without needs, I will, without a doubt, be very clear that my child with needs must move into residential care if I cannot take care of them. I will not allow my other children to suffer the burden you are suffering. They must live their own lives. It is hard enough taking care of a child I chose to have and you didn't choose this.

Furthermore, you are your brother's world now. What would happen if something happens to you? Decisions could be made for him by others that you would never choose. Make good choices now while you are able and have the capacity to do so. You really need to live independently - for both your sakes and with no guilt so you can live long and happy lives.

Have you ever looked into Scotland? There's a VSA residential place in Peterculter that seems to get decent reviews and Royal Deeside is a really beautiful part of the world. You could live in Banchory (or even more remote) which would have all the outside activities you love. It would be about 15 minutes drive from him or you can cycle along the old railway line. Its about 40 minutes drive into Aberdeen if you need to work there or there is a lot of community stuff going on in Banchory itself. I did a placement there as a student nurse one summer and it was the most pleasant place I've ever worked, our dream has always been to head back there one day.

I'm entirely ignorant to the process of application/waiting lists for such residential care and apologise if its not an option.

So.... You do need to have a plan that meets more of your needs I think. And the UK 'nicer' area is actionable. You need a spread sheet with all the areas you are drawn to (do a bit more research) cross referenced with areas that have better than average local authority/third sector provision. Somewhere the Venn diagram will provide good supported accomodation, good work for you and a nice area with outdoor pursuits that tick a bit of the Canada box. Transitioning to supported living will be hard but you can't provide this level of care for your brother for life. There are huge vacancies in the NHS in almost every area of the country so finding/moving jobs should be the least of your worries.

I know you've said you've checked, but are you absolutely certain you couldn't declare your brother as an adult dependent, if he is financially dependent on you? Maybe not for a working visa, but as part of an immigration application? I do believe there may be exceptions for adult family members who are mentally or physically challenged and financially dependent on the applicant.

if this young woman abandons brother then he may end up in a psych ward as the state really could not care less.Best bet is to get some accomodation for him if poss thru a charity.https://www.autisminitiatives.org/local-authorities/our-services/supported
He has basic skills and is verbal so would make a good candidate for this and seek out other charities that might help.Google all the charities andcheck out which ones have accomodation.I have a friend with a 24 year old son who is much worse than this young man and she knows about this so if you are interested I will get more info for you.

Hi @SimpsonWave . I have nothing helpful to say but just wanted to let you know that I, a total stranger, think you are absolutely wonderful. Your parents would be so immensely proud (I am and I don’t even know you). I sincerely hope things get better for you. You really deserve it.

My friend works in a special needs school. But she's worked with adult youth clubs for over 20 years, running them and running D of E weekends with them. 18-25 she said the system falls down but over 25 it improves again. We live in Wales and have lots of facilities for adults like your brother.

My advice get out of the city your skills will be welcomed everywhere. Settle down on the coast /country and start integration into a quieter life for both of you. Our independent living facilities sound much better too.

I'm just going to say, "you matter too". Take that how you want, but you get one literal life to live, one.

Yes, move somewhere nicer.
Then, once supported accom of a better standard found (could search nationwide and find somewhere that is nice for you to live close to), have a plan of settling him in for a year and then you going to Canada for six months working. You could start skyping everyday when he is in supported accom to get him used to it and then do that from Canada. Even take him on a trip there if that is at all feasible before or after? Going to Canada doesn't have to be a permanent thing, does it?

Somewhere by the sea might be good for you, although having mentioned Canada, maybe you prefer mountains, lochs, etc. Someone mentioned Banchory. I would also look into Elgin, Inverness, Aberdeen, Perth, Kirkcaldy, Arbroath as places by/near the sea, which are all generally pretty nice (Dundee is grotty, though).

Wish I knew England a bit better. Personally, I have always liked the south coast of East Sussex - Hastings, Eastbourne, Newhaven - although I am sure someone will come along to put me right. I visited the Wirral and thought it was lovely, good transport links to Liverpool and you have Wales on your doorstep. It was only a quick visit, but I really liked the look of Bradford from the outside and I always think north-east England is nice.

There are areas of Wales that after crying out for NHS staff...

This

Wow op this is so so so hard. You are a wonderful sister. I want to tell you a few truths that I believe. I have some similar experiences to you in that I have a disabled relative, I won’t share more info here but you can message me if you like.
You are a wonderful sister. You have nothing to feel guilty about in wanting to pursue your own life. Your brother relies on you, but you are not the only option. You deserve to live a happy & fulfilled life too, that includes doing things you want and having control over your own life. You can still do those things, to any degree you feel you want to, and be a wonderful sister. It is very difficult to not be consumed by guilt when someone you love is in an unfortunate position and you feel you are trapped by them & your love for them. It is normal to feel resentful when you feel trapped through (what you perceive as) no choice of your own. My advice to you would be to see what other possibilities for support there are for yourself and your brother. It may not be as black and white as ‘go to Canada, be terrible sister’ or ‘stay where I am, be amazing sister’. There are nuances in this space and whilst your brother deserves a caring support in his life, you also deserve a life that fulfils you, whatever that may look like. Best of luck to you xXXX

This is excellent advice I think, really helpful perspective that’s v difficult to see from the ‘child’s’ point of view. Xo

This is a huge responsibility for you to be taking on on your own.

Does he have a social worker ? What activities does he go to ? He needs to have a life outside of you and the house. He may object to doing things without you but he needs to get use to it. He may start to enjoy them.

Keep your dreams alive, you sound like the loveliest person and a fantastic sister.

The compromise is giving up on caneda but being there for him in supported living, whilst you actually have a life of your own. Don’t feel guilty.

You’ll grow to resent him because of the sacrifices you are making. Better that you find him somewhere decent in a nice new location, and then have valuable time together with no hard feelings.

Having worked in supported living, individuals like your brother accessed day groups. A bit like college. I’m wondering if you get benefits for him relating to this. I have a child with asd and can see how vocally challenging life is. I would say if you haven’t already contact social services and find out if your having all the provision he is entitled to. You deserve a life to even if it’s respite. You definitely can choose to live else where he will find it hard at first but both of you deserve to be happy. I know it’s hard but at some point I think he would need to live away from you. If you can stsrt to make steps to encourage his independence. I know first hand how challenging it is.

In Scotland, so different system probably, but there are support and social groups for young adults with autism etc. could you both go along to these together - you can meet other people n the same position. You never know, you might make friends so that you can do things together in a group and not alone.

I do wonder if moving to the coast or somewhere beautiful like Buxton

https://rossendaletrust.org/

This organisation has supported living in Buxton, Macclesfield and Sutton. There is a lovely canal near Sutton and Macclesfield

Which part of the Midlands are you in OP? My niece used to volunteer to take out people who struggled in social settings and she said the girl she took out gradually came to trust her. She did it once a week for 3-4 hours. I know she would take her to buy clothing she needed and often finish up with coffee and cake. The Mum used to get a little break from her DD. My niece was based in Nottingham. Your parents would be so proud of you but you do have your own life to lead too. Could your brother go into a day care situation one or two days a week? He might not be keen but you also have to push him to become as independent as he can be. If you start now he could be in a flat with a warden in a year or two.

Would you move to Devon? I am also a HCP, and I cared for a friend for 3 years through acute illness on my teens and twenties and I found living here was wonderful for my mental health.
if you want to drop me a pm I can tell you about living here and I can see if there are any places giring round us x

Who calls someone 'my dear'?

Have you considered Camphill Communities?

http://www.camphill.org.uk/about/adult-communities