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.

Oh for gods sake! Will you PLEASE just take the 'it's not that bad' to some other thread! PLEASE.

I now feel like a massive twat for even asking for support.

Ok - I will definitely leave now as I'm not here for rows or arguments but obviously when people are misreading things and telling me dealing with this with no support at all is actually fine it really upsets me and like I say I just feel stupid now.

Can anyone actually see me? Hello?

OP
But what we are saying is just two sides of the same coin! Your view is pessimistic, but it's not the ONLY view, but granted mine is optimistic and that's not the only view either!

For example, he has an undergrad degree, postgrad & prof qual. Pessimistically, yes, you can have those qualifications and it won't necessarily give you a great career, but optimistically, it's a lot better than someone who left school with only a handful of GCSE's (and significantly more than the average person).

And "£20 a month going to the gym really isn't that much of a luxury", well, granted those are very cheap gym fees, but actually, yes, it is a luxury considering the number of people nowadays using food banks and other austerity measures and the (is it 1 million?) homeless children in this country.

Oh, sorry, X posted..

I don't think anyone has said OP is lucky!?

No offence op but social services are not going to step in as they know you are there to support him. If your brother refuses help then I would just leave him to it...I don't get what advice you want from this thread as it seems you had a pop at quite few posters suggestions.

Park i hope you read this.
I totally get you. Reading this thread i feel many of the posters do not understand Autism. So you write a post & the reader is reading it as an NT person with an NT perspective.

I am told constantly that i should be grateful that my boys are verbal & intelligent. And of course i am but its bloody hard. They sre both very challenging, anxious & aggressive. My boys attend independent Special schools costing my LEA 150k per annum because they are easy to manage.

I hope some how you find some peace of mind & can find a way of managing your situation.

Good luck.

It is so so sad and such a waste of an intelligent man (they usually are), but you cannot cure him. This is sadly the way your little brother's life has turned out and it is likely to get worse as he gets older (sorry). You have to accept it and stop fighting the what could have been hopes and dreams for him. Honestly you may as well bang your head against a brick wall a thousand times a day.

She doesn't want advice, she wants to vent. But ignores questions allowing her to discuss the situation. And also doesn't want counselling (which is basically a form of venting).

So... I dunno.

I hope you find a way to develop a tolerance which allows you to remain in contact with your brother while getting the life you want.

Nothing can change the past , it was shitty , it happened , but i fear unless you deal with it ( you have had many valid and do-able suggestions of how you do this) you will always find a way to blame your brother and remain angry and bitter about what cant be changed.

many people who post on mumsnet have had awful life experiences , yours included, me too.

But you have a choice , let it carry on affecting you or accept it and make the rest of your life successful ........ thats your choice

all the best

PeppasNanna please don't dismiss different opinions as "not understanding Autism". I, for one was a career for a family member with Autism, perhaps many others on this thread are too?

My honest opinion, which I realise may come across as bitchy but really isn't intended to be:

• OP is unhappy, I'm not sure if it sounds like depression or not?
• her DBs life is IMHO quite bad but really not as desperate as she thinks it is
• OP has ideas about what constitutes a successful happy life and her DB doesn't live up to them
• OP is very pessimistic and in some cases is catastrophising
• DB does not currently need help from SS but could benefit from social skills / work skills classes, but obvs he won't take them which is his problem!
• DB does have issues he needs to resolve, but he will not face up to them and won't accept help. OP can't do anything about this.
• OP is defeatist and is determined that nothing can change and that it will always be terrible, which is a self fulfilling prophecy!
• OP needs to take a big step back from him without feeling guilty.
• OP should start seeing the GP, maybe for bereavement counselling or similar?

OP. And please, realise that there are always tiny incremental changes you can make to make things better.... You CAN step away, even just a little to begin with. Also, I think everyone on this thread genuinely wishes the best for you and DB, our suggestions were only being made to try to help.

Nobody is telling you to deal with it without support!

Quite the opposite.

I have got vast experience of public social services thank you very much which is why I know if your brother is a risk he will come to the attention of public services - if you stop intervening when there is a crisis.

He will. He will.

They have a duty.

And yes you can come here to vent but your also having a pity party, understandable yes, but will achieve nothing.

People are trying to help you - like you are trying to help your brother but your response to us is like his response to you!

You will not hear us, you think nothing we have suggested is useful.

We do understand how hard difficult situations can be.

I honestly don't understand why some people find autism plus mental health issues so hard to grasp.

There have been some excellent posts by people with autistic relations and some great posts this evening by PeppaNanna and CaptainProton.

But I am horrified by the level of incomprehension on this thread.

This man is not employable - his level of disability is such that he will never hold down a job. His qualifications are irrelevant. He is not coping and he never will.

OP if you ever want to talk feel free to contact me x

'This man is not employable - his level of disability is such that he will never hold down a job. His qualifications are irrelevant. He is not coping and he never will. '

Nobody is disputing that ^^

They are though, one poster was claiming that top academics and city traders are autistic, which isn't even strictly true - they may be ASD spectrum but they are high functioning enough to hold down a responsible job, which this man clearly cannot.

Well, he is more employable than some people I've met who have jobs !

I would dispute that he will never again have a job (in fact, I think he almost certainly will) but I agree that it's not likely he will have a stable career / stable anything jobs wise....

Not that I think the job element is that relevant given that even without his sister he has an income of £250+ potentially income support to top that up.

Yseulte

Yes, they are HFA not LF ASD, true. However that wasn't the tone / message of my post - the point of it was to convey to the OP that there are different perspectives on his problems, and I was illustrating what a optimistic one would look like, because I believe her view is too pessimistic.

I certainly want claiming he is going to become a banker on many £.

^ I do not mean to offend with the term "LF" ASD btw, but I believe that is the correct medical term? Hope I didn't say the wrong thing!

I believe LF ASD is referred to as classic autism although a recent survey by the National Autistic Society concluded that families and carers of people in that area of the spectrum were becoming unhappy with the term because of the negative image it created if the person in the spectrum.

Park If you are still reading, I just want to say that your brother is so lucky to have you . You obviously love him very much. You are doing the best you can with him, and as you know, he won't change, so sound off all you want.

I get you, you (and he) have been dealt a shitty hand but all you can do, is all you can do.

I have a DS who I worry will end up like your brother when he's an adult (age 13 now) and DH and I are dead. I would be so proud of his siblings if they look out for him, like you do your brother. He annoys the hell out of them now, I dread to think how he will drive them round the bend when he's older.

It's easy for others to say 'step away' and leave him to get into a crisis situation, but really I wouldn't like to be the kind of person who could do that personally, and good on you for not being able to do so.

The only active difference that you could potentially make for him is with him living in a shit tip - can you tell him that you will stop your contribution to his finances unless he agrees to have a cleaner come in once a fortnight/month. Could you afford that? At least that would take off one worry about his living conditions and you never know, he may decide he likes it clean/is embarrassed for cleaner to see it messy so starts doing it himself!

Thanks Sparkle. I don't even normally use the term LF, but in this instance I was trying to clarify. It is difficult, given its a spectrum....

My relative is probably somewhere in the middle - IQ / academic intelligence is average but struggles quite significantly with social and sensory issues. So quite like the OP's DB perhaps.

I don't really 'do' doctors as support.

That is one small thing that you can change. Everyone in the UK is entitled to see their GP and ask for help and support.

I can't see how they could help.

Well, seeing your GP certainly wont be a solution to all your problems, or your brother's. I can promise you that! And I can’t promise you anything else, not for certain. But seeing the GP will be a small step in the right direction. A tiny step that might start to turn you in the direction of you not having to be the only person in the world who is responsible for your brother. A step towards you being better able to prioritise your own health and happiness. That’s all. It will not be much. But it may be a start.

So let's say I go to my GP and say I am a carer for a sibling in a different healthcare authority who is not coping.

That’s only a tiny part of what you need to say. You also need to say everything in your first posting. Tell the GP how it makes you feel – how exhausted and drained and hate-filled. Tell the GP how long you spend listening to your brother, how much time and effort driving back and forth, how much money you spend on him, how little he can give back.

Because there is one other thing I am pretty sure of. If you tell the GP what you put in your original post, or else print out your original post and simply show it, then it is likely that s/he will take you seriously. You’ve told your story on MumsNet, twice, and both times very many people have taken your situation very seriously indeed. So why not your GP? Your GP is there to help you stay mentally strong and physically healthy. One standard question that GPs often ask when you tell them a problem is “What do you want me to do?” A good answer to that might be “I need help with all this. What can you do?”

If you want this to change then the change has to start somewhere. Not with an immediate solution. Not even with a clear path to a definite solution. But with taking a chance and making that one small step.

Park, what a shit hand you've been dealt with.

Do you have anyone that you can have a moan to when it gets overwhelming? Someone who will respond, just letting you know they are there?

Its a depressing situation, which i fully understand is NOT the same as having depression.

You sound amazing!