I am the sole carer for my autistic brother and some days I find it so hard

[Parkandfly]

I am early thirties, my brother is a few years older.

He has always been 'difficult' and I know autism was first mentioned when he was 3 and hadn't spoken but he seemed to grow out of it. I suppose in those days there was less knowledge about it, plus I think my mum may have had some traits herself and so didn't recognise his behaviour as different.

He really fell off a 'normal' track if you like after he graduated from university and he couldn't get a job, or more accurately couldn't keep one. Our mother had died, our father had moved in with a woman who disliked us both and really there was very little contact in those years. I was sort of doing my own thing, spent a bit of time abroad then moved about the country a bit. This did not stop my brother visiting me frequently - he'd call and ask 'can I come round?' Which sounds innocuous until you realise actually there were 2 hours between us. He would sometimes need money but really the company.

He just seemed to drift after leaving university and has always been drawn to people with their own issues. He decided to retrain when he was 27 and it was a 3 year degree yet the only friend he has from this is someone now in prison.

After he graduated for a second time he got a job, kept it for 2 years, then lost it. Chaos ensued with him developing an addiction to drugs. Our dad had split with his partner by this time and was living with him and it really was chaos. He would do bizarre things like get on trains going to random places in the middle of the night, and it was really dangerous because he was fitting as a result of the opiate addiction. He was sometimes violent and rarely slept, kept going to different hospitals with various 'pains' to access opiates.

He stopped taking them towards the tail end of 2011 and hasn't taken them since (I know this is true as he has blood tests.)

He got a job at the start of 2014. He lost it a few months later when our dad died - they let him go gently. Then he got another one and unfortunately this one didn't let him go gently and he was dismissed spring last year. He has not worked since, properly.

He lives off - a bit of JSA (this will stop in March) money from a flat he was left by our mum and a small amount from me.

Obviously it isn't enough but I'm not just talking money, now.

We can't do anything or go anywhere. He complains if you try and the only things he likes are eating and I won't eat in public with him as its disgusting.

So our relationship is - sat in his house which is filthy listening to him tell me the same things 1000 times over.

It drains me! Normally I'm so happy and cheery but I spend ten minutes with him and I want to leap over a cliff.

Before anyone starts, I know it's not his fault but neither is it mine. I know his life isn't great but mine has ALWAYS been compromised massively by him.

I am starting to hate his condition. I hate the way he can't talk about anything other than himself, I hate the way other people's bad news or sadness or grief makes him laugh uproariously (and he won't crack a smile if you tell him a funny joke) and I even hate the way he says my NAME - he sort of bellows it and stresses the second syllable. If he loses me in sainsburys or whatever instead of just having a quick look about he stands still and bellows for me, I fucking hate it.

I hate the way he can't be relied upon to do anything. Even simple requests like 'pick you up at 8' and he sleeps in.

I hate the way he can't do anything, no matter how late he is, without a cup of coffee. It makes his breath stink and he fills the cup up to the brim so coffee spills over the side and makes a mess.

I'm fast starting to hate him, and hate myself for it.

I also agree with all the other posters. .he wouldn't get any help if there is seen to be someone else who will provide help.

It's a shame he won't accept diagnosis. It would probably be better for him to spend time with a carer who would eat out with him even if it was "disgusting" and who wasn't worn down and emotionally involved in the situation (I am not saying this to be critical).

I feel for you....I recognise the me me me as my son is the same. Very dominant and living with him can be oppressive. It was relatively calm when he was in hospital.
He talks of moving out when he goes to uni but we all think he will flit. I have to micro manage him but he is my son...
He also recognises his diagnosis.
The only advice I can give is to be less available and rant here when you can..I know what you mean though. You just need to sound off. Actual advice is difficult as things are maintable...
I did the dla forms for him though (my son) as an adult. The fact he didn't play ball meant he did get it. Is it worth considering? I know you said money wasn't an issue.

Money might not be one of the main issues but the fact is the OP is having to give her brother her inheritance (rent) money because he won't claim what he's entitled to. That is so unfair. He's got his money and hers now.

He would never accept a carer. I doubt he would be entitled to one anyway but he certainly wouldn't accept one.

There aren't any solutions, and accepting that there aren't any solutions is largely what's so tiring.

Yes, he may be in agony but it's still hard hearing every time you see someone how iiiilllll they feel; how much paaaaiiinn they are in, accompanied with moaning and groaning and roars of agony.

To be honest I think as he's got older he's got worse.

I'm in a very similar situation. Brother currently lives with very elderly father who has dementia. When our father dies, my brother will have nobody but me to support him. The actual amount of time I spend with him can be very little in the grand scheme of things, but it's the knowledge that the responsibility for him lies solely with me for the rest of his (or my) life that weighs so heavily. Every Christmas, Easter, birthday, family party. He too is autistic but also has other health issues and now and then sets fires. Sometimes he rings me over 20 times a day. I don't have any answers either.

Just wanted to send hugs.

I'm 30 and my younger brother is very similar to yours. Can't get a job due to his autism and SAD, but very bright. Difficult to talk to, difficult to motivate, and since my mum died six weeks ago I've had to pick up the baton with both looking after him and looking after the house as well as looking after my own family. It's tiring beyond belief, particularly when you have to work and look after your own life as well!

I totally sympathise. It's draining and you have every right to feel angry at the universe - I know I certainly do. Losing my mum out of the blue was bad enough but SO much comes with it.

Park I posted earlier on in the thread but other posters dismissed my advice about contacting charities.

As the daughter, sister, niece & mother of 2 Autistic boys I very much appreciate the situation your describing.

My dad is incredibly self absorbed. Now in his 70's & forced to retire, he's deteriorated terribly.

My uncle lives in another country.

My brother has a Partner.

My sons are very much like your brother. Very bright but very socially delayed. My older son is 10 & hes very repetitive & rigid. I haven't taken them to a supermarket in over 5 years as i can't cope with their challenging behaviour. Its rare we go out at the weekends as they hate leaving the house.

By making contact with charities I realised I ultimately had to put myself first. Both boys & my dad are absolutely parasitic. They have no concept that I get tired or need to eat/drink /rest.

I'm 'training' the boys to do stuff for themselves but its very unlikely they will live independently. I can't even think about it in too much detail as its cripplingly depressing.

Bottom line is thst your brother is Autistic & you some how need to cope with him. If that means only answering his call once a day instead of 10 times, so be it. That you only see him once a week.... whatever it takes.

I think the priority at the moment would be to help him find a job, any job so he has structure & order to his day, as well as an income.

Look for online support groups too. Personally I've found them invaluable.

Take care of yourself.

OP, I am sorry you are in this situation.

• I don't quite understand how "you don't do GPs". Well, you need to now, so go. If you don't even know your GP, you'll get to know him/her after you have made this appointment.
• I don't think you should support him financially. Once he needs to, he will change his mind about claiming benefits.
• It does not matter that he "does not want a carer" or "does not engage with SS" or "does not accept help". If you stop the support you are giving him, his living conditions will get into a state, someone will flag him to SS (e.g. the GP whom he visits regularly) and he will have to accept it. What would happen if you died suddenly? Do you think he would still refuse help if he no longer had a sister who gives him money and company?
• I think you need to put boundaries in and not let him ignore them. Get a PAYG phone and don't keep it on all the time. No, he can't come over to yours. No, don't visit him all the time. And go on a long holiday (I understand you have to work but you must have annual leave) and see what happens.

-And finally, yes, you can move away, get another job, etc. Some of us moved to a different country, a country with a foreign language, and all alone, too. It can be done, you know.

1. I just meant I don't go regularly. I don't honestly see (meant politely) what my GP is supposed to help with.
2. He won't.
3. He would die too.
4. He would ignore this.
5. I've coped alone, living and working abroad, since I was 16. Don't be so rude please.

Were you the poster planning to move in and looking for tips as to how to make the house habitable? Would he accept someone coming in to help, ie. Clean and organise him without being labelled as a carer. Maybe through church or volunteer bureau. Does he even go out alone ? He sounds depressed on top of everything else.

He would absolutely NOT accept this. Any suggestion, however remote, that he was so,e sort of charitable case would be met with anger and hot denials of their being a problem.

He does go out alone yes, albeit to strange places at strange times.

Even if he paid them or made a donation to the organisation they represented? Is a lodger a possibility, carefully screened of course.

No, and no - he hasn't got the money to pay them; even if he did, he wouldn't. A lodger definitely isn't possible. The house is a state.

Do you reply to his messages? I have a young autistic man who sends me frequent messages on FB inbox (most days, maybe several a day). I rarely reply because if I do he sends many more. I tried giving him very strict dates he could message me, but that didn't work. Now I send a message on special occasions - birthdays/Christmas etc and occasionally like a facebook post (although that leads to a flurry of messages). I want him to think of me as a friendly face in this confusing world but don't have the time to spend hours messaging him.

Anyway point being. After agonising over it for a bit it doesn't seem to make the blindest bit of difference to him that I don't reply. Receiving them seems to be enough. Does your brother demand a reply? (I get a bit of 'did you see my message?' but not replying to that doesn't seem to upset him). If not could you trial being the receiver of texts rather than active responder (a different PAYG phone may be a good idea).

Honestly, he isn't particularly demanding on the phone.

I tend to get very VERY long texts outlining what happened, how he feels about it ... I do reply but short messages (not much else to say really) like 'that's great!' or 'oh sorry to hear that.'

My worries are long term.

Can he survive, on £650 a month? Apparently not.

The house will continue getting worse.

So will the job situation.

He will become more and more isolated.

His life is going to be a miserable and lonely and desperately sad one. As cold and dirty and messy as the house.

It's just sad.

Maybe I've not explained that well.

I meant a lodger once the house was sorted out, to help keep on top of things and provide some company. What does he spend the money on, £650 sounds a lot to me if he lives mortgage/rent free.

I don't know. It's not a lot, really. Not when you think - council tax, electricity, phone and Internet, car insurance, petrol, food and gym.

Sorry still seems plenty for a single person , families cope on less. Does he claim single ct discount (which could be offset if he claimed ESA etc)? You really need someone to look at this situation objectively. Would he go with you to CAB for advice. If he can't cope with house and basic hygiene is he safe to drive? Has any previous treatment given access to support?

I don't honestly see (meant politely) what my GP is supposed to help with.

1. S/he could set the ball rolling for SS to be involved with your brother on the grounds that you are exhausted (you do sound exhausted, OP). 2. It would be easier to go to him/her, e.g. for a few weeks' of time off work on the grounds of exhaustion, should it happen, if s/he already knows you and the situation. 3. S/he could help you find a support group with people in similar situations- it is huge help to be able to share experiences with others who know.

I've coped alone, living and working abroad, since I was 16. Don't be so rude please.
Apologies, it was rude of me, and you did mention that you had lived abroad. My comment was a response to a later post of yours where someone else suggested you move house and get a new job, and you said you can't just "do" this. I merely meant "yes, of course you can" - forgetting that you had.

What harm is there in going to see your GP? What will it hurt?

OP, you haven't mentioned if you're in touch with any carer support groups? If you are, great. If not, I know a lot of people who are carers find them very helpful so might be worth looking into.

A lot of people who are carers can end up developing mental health issues themselves, due to the pressures, so you need to take care of yourself. Asking for (and getting) help if you need it, isn't a sign of weakness.

Look, there isn't anything a GP can do,'or will do.

One of the first questions is rightly going to be what do I do? I hand over money and I sometimes clean up a bit. Oh poor me they will say probably thinking

Thank you Iona. It was gracious of you to apologise and I appreciate that.

What I meant by my 'can't just do' comment is that - when you have lived with someone a long time and usually in a marriage but family relationships too your lives are intertwined.

My friends know him, his friends know me (not that he really has any friends.)
We jointly own a property.
We have a past.

It's not so easy to just decide tomorrow that you're going to remove yourself from that.

Things aren't so bad that I'm prepared to uproot myself, my home, my friends for him; they may do yet but not yet.

Agree , you may find a carers' association helpful. The ongoing emotional strain and exhaustion is evident in your posts and you deserve time to switch off. You could consult CAB yourself and see if they see any fresh ideas. Are his friends similar to him? If you ask him to clean , what happens?

His friends aren't like him, no.

I don't think I would be classed as a carer.

It's just so difficult knowing I have no one when it all falls to pieces, I don't think I am doing a very good job at explaining this but I wish people would stop trying to start an argument on a thread that's supposed to be supportive.

People are trying to HELP, park, but you are determined that there is nothing to be done, everything is pointless, there's no point in trying. And that's your prerogative, of course, but it's a little difficult to know what to say other than "oh, poor you". Don't be surprised by people trying to offer solutions, it's the human way.

You obviously do more than give money and clean up a bit.