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.

Please look into L'Arche supported living, they support a lot of adults with severe autism, Downs Syndrome and other conditions to live full lives.

What plans do you have in place incase anything happens to you ? What if you can't look after your brother ? You really need to push for assisted living, you know you won't get anything unless you stamp your feet as S/S will only deal with those that fight their case. Please do not throw away your hopes and dreams.

This place can help in your home or provide residential options. Note the testimonial from a client with aspergers.
https://www.sherbutthouse.co.uk/home-care

So you know how lovely the Yorkshire Wolds are, I was speaking to a Canadian who lives just up the road and he had stayed (and then got married) because in his opinion it was nicer here, more cultured and a better year round climate.

You sound lovely and your brother is lucky to have you. It sounds like a plan could be:
1 push again for more support where you are
2 join a carers support group or more than 1 as a way to feel less alone with all of this and speak to any charities for advice
3 think about where in UK you would like to live and how you can find out about good supported accommodation- or even any therapeutic communities etc. do you have any friends or family friends who could not be carers but may be useful to live near?
4 put in plan a place to move you and your brother, it will be a difficult transition for him, but setting him up now while younger and while you are single and can focus on supporting his transition.

I’m in a town in the south west that is cheap and near the coast and the moors. Quite hilly for cycling but wonderful. There must be lots of other wonderful places that would help you feel one part of your life was moving forwards at least.

Just wanted to say, 'I hope you can work out a way to find more independence for both of you, as difficult as that must be. It would be so good for you to take even a trip back to Canada and for your brother to build up to other people being part of his life, if that is possible one day. It must be so hard to feel stuck. Your post has given me lots to think about. Thanks for telling us. I hope to see an update about a trip to canada.

OP, I understand you feel that your brother's carer has to be you, but I want to tell you something of my experience.

When my Dad died I felt I had to be the carer for my Mum. She came to live with us - but her needs grew and grew, I couldn't cope. It really played havoc with my relationship as I couldn't leave her, could never do anything with my DH or 2 DS. I was constantly "on", everything I did centered round her. I resisted trying to find a home for her. Special food, very particular about everything.

However, I realised to save my relationship and for the sake of my DS I would have to find somewhere else for her - I also couldn't cope with her (constant worry, repetition, everything on a strict routine). It was how we had never lived before. So I did find a home for her and she agreed to trial it for a month. I couldn't imagine this ever happening.

I can tell you with 100% honestly she loved it. There were activities, she had someone to chat to, their food was better than mine, they did the laundry better, there was a routine. We visited every 2 weeks for the afternoon which was about the right amount. I took no offence at the implied criticism of my care because she was much happier. You may be in all honestly surprised at the change in your brother if he does go somewhere else for a trial. Take your time finding somewhere, but you should really free yourself from his everyday demands and visit. I'm not saying your brother will want the chat and what she wanted, but if you find the right place where he can settle it could set you free. Please consider it really carefully before you say "never".

My uncle suffered brain damage when he was born, he has the mental age of under 10, but has managed to live by himself in a flat paid for by the Council for 40 years or so. My mum helps him with bills, appointments and organises his food delivery etc, but he lives alone and she visits regularly. If I were you I’d look into what support and housing is available wherever you would prefer to live.

There are good supported living placements - though they may take some hunting out. My adult daughter lives in one and is very happy - she has activities and companionship from others of her own age and a degree of independence from the family. Her placement is fully funded by Adult Social Care. We visit her at least every other weekend and spend weeks at a time over holiday periods with her and we can see she is well cared for and happy.

I couldn’t head off to live in a foreign country and leave her behind but if you could find a good placement for your brother it would free you up for relationships and more of a life of your own. My daughter’s placement is not in the same part of the country where we live but it is funded by our local authority because she was living here when she first qualified for the funding.

Ahh, I was just thinking actually Scotland is a bit like Canada in places!
Or, I guess, the lake district...

For those saying the parents should have made arrangements before their (untimely) deaths, what does that even mean?

For me it means introducing the conversation about the future with DS himself - obviously in a way suitable to his developmental stage - and especially avoiding mollycoddling at all costs

Whether with additional needs or not and no matter what their age, there's always a temptation to regard our DCs as our children, and it's all too easy to do everything for them out of love, thinking they "need it" when sometimes they need the opportunity to develop for themselves even more - and so the years slip by in the hope that all will somehow be okay, until one day a crisis arises and it isn't

As you rightly say it's not possible to "pre book" provision, but we can certainly raise the possibilities gently so as to ease the transition when it comes

When the op talked about biking and sea it’s just as where we live , literally 10 minutes from the sea with a BTTs wet dream behind my house in a mountain Forrest . I know it’s not great for everyone but for us the life is great and with OP qualifications she could find a job here in a heartbeat.

Hi op, I used to work in housing and we worked with a particular charity in this area. They would have secured social housing tenancies for vulnerable and disabled people close to their family and then helped them manage the tenancy. So for example you'd act as your brothers guardian and give consent for them to take actions on his behalf, perhaps negotiating repair work or things like that. They also check that your brother would have the support needed. So where I am at least your brother would be entitled to a disability social worker who would create a suitable care package (with your input) and if he were to have his own tenancy that would help him to manage that. I had some tenants where it was usually family that did the majority of the care like groceries etc and visited daily, but it meant they could go on a holiday for example or at least a weekend away and respite care would fall into place. Might be worth exploring if something similar operates in your area. It would also mean that God forbid, if anything happened to you, he'd be secure and set up in his own home in his own tenancy with his support around him.

Aside from that what you're dealing with is a lot, as much as it shows that you really love and care for your brother. Your feelings are totally understandable. I think you need to carve out something for yourself. Like a hobby you do a night a week or if you'd feel up to it, joining a carers support group because I've no doubt there's other people who are in similar positions who would really understand where you're coming from, they might have a wealth of info as well on what worked for them within your local trust area.

Your brother is clearly a really important part of your life and any guy who runs from that is not going to be the right guy for you anyway. But hopefully if you're able to get out and do a few things for yourself you might have the chance to meet someone who understands, and at the very least you'll build up some friendships and a bigger support network in your area.

Hi OP, I haven’t read the entire thread so forgive me if others have said similar but I so agree that a move to some greenery could really help you. I live in Manchester so have both Buxton and the Lakes on my doorstep; the Lakes is utterly beautiful. At every single one of my lowest ebbs, I have gone straight there and the place breathes new life in to me. It isn’t an exaggeration and me and DH discuss retiring there all the time. Xx

I sympathize with your situation deeply. I lost both my parents before I was 30 and am guardian of my disabled brother. It is so, so hard and beyond most people's experiences. My brother has high physical needs and mild learning disabilities and can't be left alone.

I was living in another city when my dad became ill and died. The health service wanted me to leave my home and partner and move back to look after my brother. I knew if I did that I would be giving up my own life to be his carer and that is not what my parents wanted. Like yours, they thought they had many more years with him but sadly died young without provisions made for his care. I was so angry at them for it, and also didn't feel like I had time to grieve them.

I thought I had no choice but to move back to look after my brother and was devastated at losing my home, friends, job and the life I'd built for myself. However, his social worker took me aside and said that I had my own life to live and they would do their job and get him the care he needed. It took 10 months of fighting with the local authority to get him a care package to stay in the family home but he's been there almost a decade now. I provide care one weekend a month and for holidays like Easter and Christmas.

You sound like a wonderful sister, but your parents didn't have you just for you to sacrifice your life for your brothers. I lost a lot of my 30s protecting my brother and being his advocate and guardian to my detriment. It's taken me years to realise I still needed to step back and can't live his life for him. I got married a few years ago and had two children in my early 40s so please don't feel like your life is slipping away, you still have time to build the life for want for yourself. Move to the place that makes your heart happy, reach out to some of the autism charities the PPs kindly posted, get him support and take small steps away. You deserve your own life and happiness too. Good luck!

You may be in all honestly surprised at the change in your brother if he does go somewhere else for a trial

Very much agree with this too; the change in my own DS has been frankly staggering, to the point where he now has his own place with support staff visiting twice a day

Years ago I'd have just laughed if anyone had suggested this would be possible; in fact I did laugh when the agency suggested this level of independence.
How little I knew, how much I underestimated him, and how surprised I now am to find him objecting to my offers of help because "I'm independent now mum"

Just hopping on to agree with PP’s that you’re a wonderful person and that moving somewhere you’d prefer to be in the UK would be a great start. You can’t sacrifice your life for your brother’s sake, you have a right to happiness and self-fulfillment.

You really sound lovely. It is a shame your parents didn't put some provision in for your brother, or at least savings or a house as it's left you in quite a predicament. I think you will be surprised at how he may flourish in supported accommodation once the initial stress over change has passed. You deserve to have a life too.

@SimpsonWave why not look at Sheffield. It has lot of facilities but also is on the edge of the Peaks. Lots of hiking and cycling opportunities.
I think you would have good choices there.
Good train links too.
Many coastal towns can have bad public transport, high unemployment and are dead in winter.

I'm not it's really helpful to blame OP's parents, it sounds like they both died fairly young from cancer and potentially there wasn't much time to think about it. Also people with autism sometimes do develop a lot more independence as they get older so they wouldn't necessarily have seen what OP was facing was more permanent.

OP you sound so nice and I really hope you find your dream. Living in a bustling market town somewhere in Scotland/Wales/Yorkshire etc sounds like a great set up for you both. And well done on creating and sustaining your career while looking after your brother up to now.

You sound lovely OP. Come to Buxton : )

Climate a bit alpine but lots of good points.

Much sensible advice above and more than I can tell you. I know its hard, I have a child with SEND and it is a battle to get support.

Supported living sounds more viable.

Make a plan, then you can always holiday in Canada.

You need a life, and you deserve one!

Might come with you, as have a friend on Vancouver Island.

invites self on road trip

Do PM if you do move here and I can tell you where is good to buy or not. Been here a long time and grew up locally.

So I understand the principle of people saying they should have 'made arrangements' but as someone who has grown up in a complex family like this, I still don't really understand what that means in practice?

What it means is that the disabled person is placed in a supported living environment at a youngish age (about 18 - 20) so that they're already there when their parents die.

It is mightily unrealistic for anyone to imagine that a disabled person who has lived with her/his parents until they're 50-odd will suddenly manage to live independently when the parents inevitably die. Those parents could be 80 - 90 years old by then.

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. He will inherit money (in a Trust) but he will not have any coping skills for living independently.

In a way, it's cruel to do this to disabled people.

My sister has an autistic son and he is now 41.
He went to a special school then moved back home briefly, then started in an independent living facility at the age of 18.

I truly never thought he would be capable of managing, but after five years, he was able to live in his own small flat, with workers going in, and my sister seeing him several times a week. He cannot manage money so his siblings assist with this, but he can prepare simple meals (mostly microwave, but he can do it) and he doesn't need someone there 24/7.

It is the best way, I think. Keeping disabled people at home for fear of independent or supported living does them a disservice.

And it also means that people like the OP are in a very, very difficult position.

Hi I have a sister in supported accommodation, 2 people with learning disabilities living together in their own house with staff there 24/7 to support their needs and maintain safety etc. not always been perfect there have been sone issues but we’ve found social services support us and her at these times, she lives 10 mins from me , can pop & see her whenever, she has a far better life than I could give her along side my job and family. Way better social life than me!! I would move heaven & earth for her and we love each other dearly but I deserve to live the life I want. I absolutely choose for her to be a big part of it and she stays with us regularly and if it all fell apart tomorrow we would make do but in the meantime we both deserve to live our own lives the way we choose to.

I hope you find a way forward you sound so lovely and sibling love especially when you’ve probably grown up in a third parent role is really special but that special bond deserves to be nurtured and enjoyed around a full life.

please ask for help and I hope your brother is able to accept over time the decisions you make to enable you to both forge your own lives .

Your setup right now isnt fair to you or your brother (what if you were hit by a bus tomorrow?) you need to get him in the system and get support.
I think supported living would be suitable for him based on how you describe him and as others advice he may well surprise you.

I would strongly recommend some therapy or similar to help you work out a proper plan. You are young enough to make changes now so you can live a much fuller life, meet someone and have a family.
I would also not give up your canada dream so easily.

I imagine that might work well for a person with a moderate learning disability who can retain information, meanwhile those of us who love people with severe learning disabilities..