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 think if he could manage on his own for a bit, then he's not completely incapable and that would allow you a bit more freedom?

I can completely understand why it would be upsetting seeing your Dad's home in a state. Is there no way your brother would accept someone coming in to clean?

What I was trying to explain, and obviously didn't communicate very well, is that his plans are futile. I explained them to try and express the distinction between the reality of a nearly-40 year old having totalled less than 3 years work living in squalor and with few if any friends and the life he will have in his head which is as I outlined above.

The fact he doesn't have this life is as I've explained due to the professional body primarily who dismissed him. This professional body are blamed for EVERYTHING and he goes on and on and on about it.

So now everyone seems to be saying - leave him to it, he's happy - he's not!

I'm saying this as a genuine thought and in the hope it might make OP feel better about the situation:

AIBU to think his life doesn't really sound that bad? And that perhaps OP needn't worry quite so much? And certainly shouldn't feel guilty for just leaving him to it!

• he has a house with no mortgage
• he has an annual income which is more than about 20% of the population taking into account no housing costs
• he can afford luxuries such as going to the gym
• he has two degrees (I wish I had two degrees!)
• yes, he has a shit job history, but so do lots of people - some even choose to be SAHP and then get their fist job after kids have grown up. It's not insurmountable.
• he has managed to hold down a job for 2 years, so he isn't utterly terrible in that regard.
• his social skills are appalling, but many peoples are!! (If you believe stereotypes, lots of the best academics and stocks and shares traders are Autistic, though granted I'm stretching this point somewhat and I'm not claiming lack of social skills itself is an advantage by any means!)
• his house is a dump, but so what? Providing it isn't causing him health problems then if he wants to keep it as a dump then that's up to him.
• he has overcome his drug addiction. Clearly there's always a worry he could go back to it, but for the time being he is ok.
• he may be a hyperchondriac - well, lots of people are. I overheard in a vair vair naice part of London several months ago a woman saying that during her pregnancy she booked a doctors appointment every week without fail "just in case" there was anything she might want to discuss.

^ which does not mean to say you shouldn't feel shit about the fact that you're responsible for him, just that you don't need to be responsible for him

No I understand very well that his plans are futile but he is obviously a rigid/stubborn thinker......let him get on with it

Let go of it

He is what he is

Suggest another career, suggest online study,

Or suggest nothing. Consider and accept he does not want your advice or input but just wants you to listen.

Like I said you don't have to listen, you can pull right back from him - if you want to

Even if he isn't happy, perhaps he never will be, that is a shame but some people are just like that

It's not the end of the world

You sound like a strong and determined woman Park, and perhaps you have it right about the not missing what you never had. I never had it either but it didn't mean I didn't want it, that I didn't want someone who could be there for me if/when my life fell apart.

I think its ok to support your brother now, and I used to do something similar but when I had children of my own I started to resent paying out monthly for someone not willing to help themselves when I had my own children to raise. Children are expensive and paying out to my relative meant that I was denying my children the opportunity to live in a bigger house a 3 bed instead of a 2 bed. My husband wasn't best pleased either.

It's a lot to ask someone to take on the baggage of supporting an adult unwilling to sort themselves. It certainly ended a couple of relationships before I met DH. I don't blame them for running a mile in hindsight I was far too involved in this other person's life it was like a third person in the relationship.

I don't know if what I am saying is helping at all.

I often find that when you read about something from the outside it doesn't look too bad Blue.

Like a previous poster I think you are very fixed in that opinion and I don't think you will change your mind no matter how much I try to explain.

However I will try:

1. The degrees. You know, having a degree isn't that big a deal these days. He's actually got three. One an undergraduate degree one a professional qualification and one a masters. I've got a degree myself and believe me I am not a genius. You get a degree to hopefully enable you to get a higher paid job and that's not worked has it?

1. Going to the gym at £20 a month really isn't that much of a luxury you know? Besides I think that's the only thing that keeps his body and soul together.

1. He has a house with no mortgage because our parents died.

1. See above for annual income.

1. He has held down a job for two years and was then dismissed and unable to practice in his professional qualification for 5 years and you think that's not that bad

1. His house is a dump and it isn't a problem other than the fact it further isolates him and is an outward sign he isn't coping.

1. He's overcome his drug addiction yes. I suppose the three years of hell don't count then?

1. His lack of social skills mean he has no friends at all other than a couple from school who will have the odd drink with him. So throughout his twenties and thirties no girlfriend, no holidays, no weekends away, no meals out to celebrate birthdays and weddings and christenings, no meeting friends for coffee, no support.

Except me.

You think it's not that bad - try it. Sorry if I sound rude but now I am so weary of you dismissing me and saying it's all fine, it really isn't.

I've told him very honestly that when I have children I'll need that £400. He's been very accepting of that, but that's because it's the future and his future, according to him, is fine. When he gets a job ... Except he won't :) It's hard.

you said in your op that he caught the train to random places in the middle if the night. thats what i refer too.
You didnt answer my question about anti-social behavior ( except historic drug use) that may make him vulnerable ? you also fear there may be another crisis ? what would that be ?

That was one of the things he used to do when heavily under the influence of drugs. He would get the train in the morning to go to college as he was studying at that point and then my dad or I would get a phone call from Edinburgh or somewhere saying he'd fallen asleep on the train and was stranded That was fun ... Thank god he hasn't done that for ages.

I believe you have already posted about this matter previously, under a different name? The brother who thinks he's a misunderstood genius?

My advice is the same. Please don't sacrifice your life for your brother, who won't allow himself to be helped. Because that's exactly what you are doing.

Park, do you love him? Or care about him at all? Or is that you just feel responsible for him? Because he seems hard to love.

You are just reading what you want to read on here.

You are not responding to constructive comments.

You are very rigid and I suspect beyond changing the situation . Because you are like a wall (meant kindly)

Someone is trying to tell you the positives but each time you turn them into negatives!

Believe me there are people worse off than you or your brother.

HE IS NOT YOUR PROBLEM. His life really isn't that drastic.

Yes park and when you get the call you say 'sorry I can't come' at which point the authorities will be alerted if deemed necessary.

You are doing a job for them because you keep catching him. If you stop, they will pick him up.

But you need to step back.

When they pick him up, if he refuses their assistance well that's a different matter but it's their issue not yours.

and a degree isnt always about career , i have some friends who have studied for the sheer enjoyment of it and live very basic frugal lives with no professional career .
Perhaps you are measuring him against what you value and not what he wants. he may talk about relationships to you without true understanding of what that would mean for him. If he truly does have ASD he may not enjoy friends and relationships and the demand they would make on him.

You are keeping your brother financially afloat, I don't know how anyone can dismiss this as seemingly irrelevant. Your brother would not have enough for gym, bills, cats, food etc without your help. He is not coping on his own, he is nearly 40, a dire CV and no real contacts I suspect to get a job.

I get it, and it used to drive me crazy that when I was discussing this with people I know about my situation, the serious lack of understanding used to drive me mad. Lots of simplistic suggestions when I just wanted to have some listen to me and help me offload.

Yes, and there are people on every single thread tonight who are better off than many, so how about going and telling them they are lucky and should be grateful? Because I'm sick of it. This is what always has happened: I can't EVER say my life is ANYTHING but amazing because I am lucky?

I was 16 and my mum had died and no one gave a shiny shit. All anyone wanted to talk about was my dad and brother. Then my brother went to pieces and everyone said how awful for my dad. Then my dad died and my poor brother how will he cope. No one ever asks about me, no one ever shows an interest in me, I'm not entirely sure anyone has ever really loved me, although I like to think my dad did.

All I wanted was a safe place if you like to say the things I can never say in real life and I can't because after all, it's not that bad and I should force my tea down even though I'm full because children are starving in Africa.

I'll hide the thread, so please don't reply now. It's obviously something you just CAN'T talk about.

Captain thank you so much for getting it, I will leave the thread now I think is probably best but I don't know how often I can say he is miserable as sin, highly anxious, paranoid, unhappy, zero self esteem and people are saying it's ok and not that bad and leave him as he's happy?!?

Quite in all due respect it is not guaranteed they will catch him when he falls. I know they never caught my relative, and that's with several ODs, drunk and disorderly behaviour, and arson attempts. My relative died, the police and the GP could not get my relative the care they needed. You are being naive, either that or you have been very lucky.

OP, once the five years are up will he be able to work in his chosen field again, or will the dismissal effectively end his career permanently?

Why does he think you are giving him the money, if he thinks he has no additional needs.

It sounds appallingly hard, I really feel for you.

Park if you see this, I truly wish you find the love and happiness you deserve in life.

The five years were up 2 years ago - he has since been dismissed from 2 other jobs in this field!

One wasn't recorded as a dismissal - he was permitted to resign - the second was recorded as a dismissal. That was in April 2015; he hasn't worked since.

See the things you list as 'actually it is that bad look' are still not that bad.
You are catastrophising and I do understand why but in some ways you are matching his rigidity and unwillingness to see another reality that we see....
You cannot change this.....it is what it is..
I learnt a long time again that accepting my son rather than forcing him to be what I wanted him to be/ society did was better for me and my mental health.
I nod in the right bits and agree with his rantings....

OP, was this your previous thread?

www.mumsnet.com/Talk/am_i_being_unreasonable/2537715-To-wonder-if-you-know-anyone-who-has-never-really-worked?trending=1

Only one person has said you're lucky. I think you're looking for arguments here because you see everything negatively. You're picking out the bad stuff and ignoring valid questions / invitations to talk.