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 recognise your inability to see the wood for the trees due to my own circumstances. You're coming across as having problems with inflexibility of thought and a lack of being able to take other opinions on board. Its happened to me as well in the past and one day I realised - jeez, I must sound or come across as being on the spectrum myself. Im not. Im just someone who had got into the most awful of ruts as a carer and my thought process was trapped in a viscous circle. I used to 'vent' about it but the reality is that venting can be counter-productive due to it quite often re-inforcing in our mind that things cant change. Its not that we do it deliberately, our minds are just kind of stuck in a groove and we find it difficult of not impossible to 'bump the record player on to the next bit of the song'.

I think you are going to have to find the courage to do one thing in order to break this viscous circle you're in. It could even be having a special phone that your brother contacts you on with you only answering it a couple of times a week. Or perhaps withdraw the money you give him so he is forced onto benefits now, or further down the line if bills don't get paid and he gets into arrears with his bills. I know its really difficult and scary to think about doing something like that but you must. Its whats best for both of you for all sorts of reasons. No-one can hold back the tide and that's what you're trying to do but if you can look at it like this perhaps it will help - sometimes things have to be completely broken and taken apart before they can be rebuilt and repaired.

My own son is going through the most horrendous of times right now. I couldn't even begin to explain it. But this last week its become obvious the hell on earth he's going through have highlighted a few things about him that mean we have something to work on with him a few weeks from now when his new medications kick in. Its not a case of every cloud has a silver lining but it is very much a case of 'if this had to happen then so be it'.

I hope this makes some sense.

It's his house now, I think you do need to just let that go - hard though it may be. Is he desperately unhappy? Or is it a case that you would be desperately unhappy in this situation? His life is what it is. It might get better. My severely autistic son's life has deteriorated massively in the last year & a bit. We have had to accept that it's looking a very different future than it was. That doesn't mean we've given up, just that our expectations & hopes have shifted. However much you want your brother to have a 'normal' life it isn't going to happen.

I had no idea that snowcake was based on Ros Blackburn! If you get a chance to go and see Ros Blackburn speak OP, do. She sounds very relevant to your brother.

Does the house have neighbours? If so, at some point in the future this situation may mean that they feel forced to contact authorities - if the rubbish got so bad that they called Environmental Health, or they saw him have a crisis or behaving strangely - in which case things may be taken out of your db and your control.

hi devilish , Ros advised on the film and sigourney visited her at home a number of times and used some of her mannerisms , as well as her preference for roll top jumpers. Its not Ros's story .
I was very fortunate to have Ros in my tutor group and her abilty to talk about asd while her disabilty at being able to organise herself was apparent to see . wendy lawson is also very good .
unfortunately i dont think the op is in the right place to understand and shift expectations , i hope she looks back and see's these threads as a true attempt to support and advise and not a diminishment of how Asd impacts on everyone in the family.

I might watch the film now! I saw Ros speak when ds1 was about 5. She is very different from ds1 (non-verbal teen now) but I found her talk very interesting & it taught me a lot. Despite their outward differences it was very relevant to ds1 as well.