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 don't think I am controlled really. I don't think I can find the words properly but it's like there's a massive gulf between reality as it is and his perception of reality and that's both infuriating and worrying. Imagine how you'd feel in a country where no one spoke your language? That's a bit what it's like when I'm with him.

Thanks x

OP
I told you ant the other woman to try to give you some perspective as you seem so miserable and negative.

You come across as seeming very sure that there are no solutions to this problem (??) therefore logically, if this situation will continue exactly as it is then your options are 1. To Continue to be involved or 2. Extricate yourself from the situation by choosing not to see him etc. Your choice!

Perhaps you have spent so long being there by his side you can't find the way out of this situation. Your life has always had your brother and his needs coming first I suspect. Is there any chance you can find some help for you? Help you work out how to proceed?

You sound exhausted and out of patience and honestly I don't blame you.

So what's actually stopping you from walking away?

Seriously. You've already said that nothing will help yet you're clearly on your arse. So walk away. Leave him to it. If he's capable of making decisions for himself then let him get on with it. You might not agree with his choices but he's a grown man and they are his choices. He really isn't your responsibility. You say he'd have a tantrum over it, well sod him. You have a tantrum. Scream at him that he's ruining your life and you've had enough. Then leave. You have every right to. He's killing you and he clearly doesn't give a shit. He's quite happy to use you for the rest of your life. The only thing that can change is you. Tell him you simply can't cope anymore and just go. Stop all contact. Be harsh. What have you actually got to lose?

Before anything else you need to get care for yourself.

You need to talk through your situation with a Carers organisation and a therapist, because you're caught in a toxic trap of obligation and guilt.

I absolutely commend your integrity in caring for your brother, but you can't do this it's destroying your life. You need to work to a point where you understand that you can't be responsible for him.

You need to pass the safety net to the state. You cannot save him.

As long as you're around he doesn't need a social worker. If you're, not he has no benefits coming in, and they can see he can't be responsible for himself. That's the point at which they will be forced to act.

There aren't any solutions, I've been consistent in explaining this from the start just like you've been consistent in getting little sly digs in

Hopefully it made you feel good.

I think my well of sympathy for brother and his many issues ran dry a while ago, is the heart of it.

Surely it would depend on whose offering that help though op. Social workers can be used for signposting to other resources, as well as all the other stuff they do. And a large focus of the care act is acting before the situation reaches a crises point, mainly really because dealing with crises is expensive, so its obviously desirable to act before things get to that stage. If your brother is struggling to hold down a job, and he wants to work, then he could always be signposted to whatever organisation in your area deals with supported employement. He'd have a worker who would help iron out any difficulties between your brother and an employer and help put strategies in place to try and stop the employment failing. They would also assist with benefits and applying for them.

You can't help him unless you are strong enough to do so without harming yourself. If he was drowning, and you couldn't swim, you would either both drown, or you would have to rely on help, or leave him to it.

Please, please. Put yourself first. Take some time away (go off sick) and get some respite from this. It sounds terrible and you sound broken by it.

Hugs. I don't have any solutions but you sound so sad and defeated.

So I move house, change jobs, get a new phone, delete social media, prep my friends not to tell him where I am?

Yes, it's doable. But don't make it sound like something I could just do, it isn't.

Dancing, he'd never accept that. Ever. He scorns similar organisations - he had to go on an addiction course and the almighty fuss about that was unholy, quoting what people said in ridiculous accents (the gist was that they were scum of the earth and he was lowering himself by fraternising with them.)

The irony is not lost on me, but on him, it is
Anyway, he'd never go on something like that.

I don't think it is something you can just do. It may take a long time for you to get to the point that you give yourself permission to step away.

Yseulte
So you're trying to shut down opinions which differ from yours by dismissing them as being invalid!? How rude and !

You have no idea what my experiences of these situations are, do you? So how would you have any idea if I 'get it' or not?

No of course its not something you could just do. And undoubtedly there is still that element of guilt. I wonder really, as he does not seem to be seeing the picture clearly, whether he really has capacity when it comes to managing his finances if he won't apply for benefits but is incapable of holding down a job.

It's not easy to walk away, it's easy to suggest it on a faceless forum. But when you know walking away could mean the difference between someone you love either still being there because you are there for them, or them slowly (or not so slowly) killing themselves through neglect and substance abuse, then surely people can appreciate its not a quick and easy decision.

You have to make peace with yourself and prepare yourself for the worst.

This is why I think people in Park's situation need some real life support and counselling.

I don't think he's employable full stop.

I think at this point the question is what becomes of him when his benefits run out.

That's the time at which you can step away and SS will have to step in.

But you DON'T 'get it', Blue. Fair enough in an actual debate or discussion, but here I just really need to sound off and get support.

I understand I glossed over it in my OP, but did you miss I lost my mum as a very young woman, before I even left school, and that my family then fell apart leaving me to get through the rest of school and further education alone? And then when I did get some of my family back, my brother went stark raving mad (not to put too fine a point on it) and then when I was barely thirty lost my dad as well?

So at an age when some of my friends still have grandparents still alive and well, I have neither parent alive, and the one surviving family member I do have is utterly breaking me, and you tell me I lack perspective and honestly feel you have been helpful?

I could deal with my brother fine when I had my dad as well. It's the isolation that's getting to me more than anything.

Oh ok Park, sorry, I see he's a bit more involved in your life than that. Could you at least stop going to his house?

Can you get a PAYG phone just for him and keep it mostly turned off?

We both own a flat and a house outright.

At the moment I live in my flat and rent out my house, he does the same in reverse.

He gets £250 from his flat, then the £400 I get from renting out my house. So without lifting a finger he has £650. So he won't starve, but like I say, it's not the money really.

Did you post about your brother recently, OP? If not, another mumsnetter has a db who sounds remarkably similar to your own and it may be a source of comfort to you to know that you're not alone in finding the going tough.

Regardless, I can only say what I said on the other thread which was along the lines of, although it may not seem like it, you weren't put on this earth to be your brother's keeper and you must reduce the amount of contact you have with him or you'll crack under the strain.

It's a great shame he wasn't assessed when he was a child because now he's an adult no agency such as SS, community mental health team, etc will visit him unless he asks for help which he is not likely to do while he's got you and his GP's surgery pandering - that's not exactly the right word but it's not too far off - to him in that he can call you, and call on you, at any time for company/support and trot along to the doc's with mainly imagined ailments whenever he wants.

In effect, anyone who has dealings with him has to make allowances for him which is why he's socially isolated and living in his own world where he can't see that he's got a problem (or ten) as, in his mind, it's us that's out of kilter with him rather than other way round presupposing, of course, that the thought of there being an 'us' ever crosses his mind. If he's anything like one of my friend's dbs, he'll come across as having more than a tinge of arrogance in that he believes he's superior to others.

In short, it's not his fault but it's not yours either and, hard as it seems, all you can do is stand well back and let the dice fall where they may. I don't say that lightly as I know how difficult it is to disengage from those we care about even though they may show little sign of caring for us, but if you don't do it now you're going to find yourself in this exact same situation in 5, 10, 30, years' time and you'll be wondering where your life went while his won't have changed.

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Blue I don't want to be drawn into an argument on a thread with a distressed OP. I can only go the words you have said here - from that you don't seem to get it. You're just upsetting the OP. That's all I have to say.

He will never ask for help, seriously. He's got it into his head that 'admitting' to being autistic or "admitting" to needing help/not coping will mean he will not be able to work in his field.

The truth is he probably won't be able to anyway but he doesn't realise this.

Park have you ever had chance to grieve for the loss of your mum and dad? Or have you just had to always be the strong one?

I don't know if there is an answer to your brother's problems. But you need to switch this around to you now.

In my own way I have. Not so much my mum but it was ages ago and I always found her difficult and so in some ways it was hard to grieve for her, as she really didn't like me very much and made it quite obvious.

My dad dying hurt more than I thought possible and it still does hurt but I am a very firm believer in keeping busy and having structure.

But I know what you mean. I have said before that I've no plans to have a breakdown but it would be nice if it was an option!