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To wonder if there's any way forwards

(26 Posts)
doitanyways Mon 14-Dec-15 17:55:22

Last night I had a thread about my brothers hair and an interview. Today things have escalated quite a bit and I need advice, and never mind potentially being outed.

My brother is 2 years older than me and autism has always been the elephant in the room where he's concerned. I think it was first mentioned when he was about two, but my mum wouldn't accept it. She died when I was 16 and he was 18.

He has had a very troubled life, and has drifted a lot. After completing his undergraduate degree he didn't do much, tried one course but it didn't work out, spent some time doing factory/warehouse work before deciding to do a second degree that led to a professional qualification. Completion of the course was fraught with difficulty and two of the placements mentioned autism but he scraped through, qualified and got a job.

It's probably fair to say he's always been a bit of a 'drama llama' where health is concerned, you know the sort - you have a cold, he has flu, you have flu, he has pneumonia, you have pneumonia and he's dead (!) but during this time it became obsessive and the litany of things wrong with him just grew day by day. He eventually left that job after two years' employment and he was referred to the professional body because of a concern he was a drug addict! This was confirmed to be the case and he just went - well, off the deep end is the only way I can describe it.

This period of time was incredibly difficult as he was abusing prescription drugs and kept getting himself admitted to hospitals and ranting about this professional organisation to anyone who would listen. This was in 2010, to try to keep a rough timeline. They did really try to help him and he saw a psychologist, had CBT and went to a narcotics anonymous group. He just kept complaining about this - he saw it as a punishment.

Eventually, four years down the line the suspension was lifted and he was allowed to practice again but with certain conditions. He got a job in January 2014 and worked there for six months. Unfortunately our dad very sadly passed away (suddenly) in the spring and some concerns were raised about his practice but I think given the circumstances they let him go quietly out of the back door as it were. This meant he got another job in the autumn and yet very soon the same problems raised their head.

These problems I suppose are familiar to anyone who knows anyone with autism - unable to relate (ironically he seems incompetent when he isn't I think) not listening, focusing on one thing to the detriment of everything else - anyway, they dismissed him in April but unfortunately weren't quite so 'forgiving' and he has a reference confirming there were grave concerns about his performance which has stopped him moving on really. As a result he hasn't worked since.

I tried really hard to persuade him to get a proper diagnosis around this time and thanks to the knowledge of a friend we were able to get this started. My friend also put him in touch with another adult who had been diagnosed with autism.

He's been talking to this person and has decided he isn't going to go ahead with a diagnosis and the messages he sent me - I showed to a good friend and I think we both concluded he sounded utterly unhinged: he rants and raves and accused me of scuppering his career, it was horrible.

So, to try and not make the post too long, where to go from here?

He can't get a job, because, well, he is awful in his line of work (I don't mean that horribly.)
He won't consider anything that's NOT his line of work
He can't claim benefits as he won't accept he's disabled

So - any ideas? What the hell can we do?

I'm utterly drained. I think this moment has been coming for months but I'm just so very tried of it all.

WhereYouLeftIt Mon 14-Dec-15 18:19:35

There is always an answer. It just isn't always the answer you want to hear sad.

OP, it sounds to me as if your life is largely on hold while you support him. Is anyone supporting you? On your earlier thread, you said you were responsible for his care. I don't think you are. Just because your parents failed to get him the help he clearly needs when he was younger, you are not required to take over from them in his care. That pressure is coming from inside you, and I honestly think you need to let it go - it is crippling you. As an analogy - the first rule of first aid is that the first aider assesses whether giving aid put's them in any danger (e.g. from electric shock). You have ploughed in to his aid without first considering yourself.

The way forward for you may well be to step back from him.

mincebloodypie Mon 14-Dec-15 18:21:46

This sounds incredibly difficult. Hope someone else will be along with better advice flowers cake

doitanyways Mon 14-Dec-15 18:23:38

Thank you smile

Unfortunately, how to step back? He won't let me - I mean, I can hear the same story thousands of times over and over and he gets just as angry every time. Whatever I do, it's not enough.

But realistically he's already in a bad way. His house is falling down around him with toilet not flushing and heating not working and bedclothes never changed - it smells awful.

If I don't do the small amount I do, I can see him being dead within a year.

lilydaisyrose Mon 14-Dec-15 19:11:27

Hello lovely,

Bizarrely I think I know you (you know me as V on another Mummy forum flowers). I am so sad for you but do think that given everything you've said here and in the past, whatever has happened over the past few days is probably for the best. He needs professional (adult SW?/befriender) support and you should not have to keep him afloat financially, emotionally or otherwise. He is your brother but not your responsibility. I can't imagine how hard this would be, but do think you may have to step right back, give ultimatums, play hard ball etc then see if he crumbles or starts to take positive steps to change.

Can you self refer (well refer him) to any support agencies, befriending initiatives? Are there any other extended family members who would take him on either as a shared responsibility or as an apprentice or to work in an office or as a handyperson/gardener?

I feel really helpless for you and my heart goes out to you.


doitanyways Mon 14-Dec-15 19:35:27

Hello! Had no idea you were on here! flowers

Yes, this is where we are at ... He won't hear of any form of befriending - any suggestion he needs charity would be met in horror hmm

WhereYouLeftIt Mon 14-Dec-15 19:47:35

"Unfortunately, how to step back? He won't let me - I mean, I can hear the same story thousands of times over and over and he gets just as angry every time. Whatever I do, it's not enough."
When you say 'he won't let me' - how can he stop you? You're supporting him financially - what would he do if your stopped giving him money? You listen to his story over and over - what could he do to stop you putting the phone down/physically walking away? These are genuine questions not suggestions - I don't know him or his behaviour. What would/could he do if you refused to participate?

doitanyways Mon 14-Dec-15 19:52:22

Good question.

If I stopped supporting him financially he would have no other means to access money and would probably be dead within twelve months once various reserves ran out. You know how occasionally those news stories hit the headlines, about someone who starved to death and everyone can't understand how it happened? I can.

As for the emotional stuff, it is harder to say . He would probably do a lot of things that seem very logical to him, but look (without wishing to sound contentious) utterly insane to anyone else.

wannabestressfree Mon 14-Dec-15 20:03:24

You almost have to force the situation and you know that and that requires you stopping support both financial and emotional.
I know it's easier said than done but he won't get help otherwise.
And your life will be completely absorbed by his.....

WhereYouLeftIt Mon 14-Dec-15 20:06:03

That's twice you've anticipated his death if you don't step in. You are putting yourself over a barrel. Say he didn't die. Say he came to yours for dinner once a week, but no more, and you refused to listen to his railing at the world. Again, question not suggestion - I think you need to play 'what if' in your mind, because I suspect you've painted yourself into the 'responsibility' corner and you need to get out of that way of thinking.

You need to be a first aider here, who protects herself first and foremost. First aiders do not sacrifice themselves, and neither should you.

doitanyways Mon 14-Dec-15 20:06:23

But he won't get help.

I know I sound defeatist and I don't intend to, but he doesn't see himself as somebody who needs help in that sense. The messages I had today - bear in mind that the last time he was at the autism assessment place was August/September, I think - were so - angry and ranting and well, crazy, I suppose. Really irrational and paranoid.

I know that fuelled by anxiety but that's a diagnosis. He's also been to his GP and been shouting at them hmm

He's barely functioning at the moment as it is.

doitanyways Mon 14-Dec-15 20:09:03

You can't refuse to listen. Honestly - it's like you get sucked into a roller coaster without a seatbelt and just have to cling on, desperate for it to end!

I have, in desperation, begged for him to stop going on about certain things before, and he does for a few minutes and then starts up again.

Truth is, he'd be a lot happier if I think it was largely accepted he'd never work and would rely on disability benefits but he doesn't see himself in that light. He sees himself as a talented, clever individual, still capable of getting an amazing job and having a glittering career and a wife and a family.

TheWrathofNaan Mon 14-Dec-15 20:13:40

Your last paragraph describes my child. I am so frightened of the future.

doitanyways Mon 14-Dec-15 20:18:37

Do you know wrath, I think the isolation is the worst thing. Even my friends who have known DB forever are very much inclined to see things in black and white terms - 'tell him no, tell him he can't, get him to do this.'

Its so very sad and yet partly inevitable. I have been listening to his wonderful plans for the future for - oh, a decade or more now. How he's going to get a job and then do this, and that.

Since accepting he has a disability I've found things easier and at the same time I still find him at times so incredibly frustrating.

JellyMouldJnr Mon 14-Dec-15 20:19:32

Would he consider some kind of career coach to talk about his strengths and weaknesses in a work environment?

doitanyways Mon 14-Dec-15 20:21:22

He's had that and comes out crowing, saying he's had some 'good ideas' (remember he's spent a total of ten years at university all in all.)

Why no one has apparently thought to tell him buying clothes that fit and cutting his hair would be good I don't know!

WhereYouLeftIt Mon 14-Dec-15 20:22:50

His GP is aware of his behaviour. If he's been assessed then he's 'in the system'. (How useful that system is I have no idea.)

"You can't refuse to listen. Honestly - it's like you get sucked into a roller coaster without a seatbelt and just have to cling on, desperate for it to end!"
What is stopping you from physically getting up, and walking away? Would he physically stop you? Follow you? Or are you just unable to 'be rude'?

"I have, in desperation, begged for him to stop going on about certain things before, and he does for a few minutes and then starts up again. "
Again, what's to stop you saying 'I asked you not to talk about that, I'm leaving', and doing so?

Is he stopping you, or are you stopping you?

wannabestressfree Mon 14-Dec-15 20:24:27

You see I think we will echo what your friends think and yet you won't agree. So this is your life.....
And the thing is he won't be able to live his life on disability benefits unable to work as things have changed.
Your role is going to be his parent as that's what the state relies on.... Your guilt. My very mentally unwell son (and autistic) only got the help he needed when I said no more. He had to fall apart. And it's been the making of him......

doitanyways Mon 14-Dec-15 20:33:01

To be honest where, the rants are mainly at home, his or mine.

Sometimes I do beg ask him just to stop going on about something, and I know my post has mostly been very serious but this can have comic results, like the time he posted twenty different status updates on Facebook about Nigel Farage and I'm pretty sure that's because I screamed in desperation for him to stop going on about it!

The problem is, what I've been trying to get him to do is to try and deal with things sensibly; okay, he's lost one job but he could apply for minimum wage bog standard roles - but he doesn't, it has to be at the level he was at. Then he doesn't get them but the anxiety and nervous restless energy this produces is crazy. His sleeping goes to pot and he starts doing loopy things like going to the university library at 2 am.

I don't want him as a weight round my neck but I feel like Marley carrying the chains at times and there is no way I can remove them.

WhereYouLeftIt Mon 14-Dec-15 20:54:57

"I don't want him as a weight round my neck but I feel like Marley carrying the chains at times and there is no way I can remove them."
There is always an answer. It just isn't always the answer you want to hear sad. Which means you can remove these chains, but there will be fallout.

If you do what you've always done, you'll get what you've always got. You don't what what you've got (no-one would). So you need to change what you've always done. You know that. But you've painted yourself into that corner marked 'responsibility', and your feelings are preventing you from making the change. Honestly, I think you know what you have to do, you're just unwilling to do it. You worry about the impact it will have on him, but because of this you have blinded yourself to the impact the current situation already has on you. Is your health and welfare less important than his?

doitanyways Mon 14-Dec-15 21:00:40

I would very seriously think his health and wellbeing would be seriously compromised.

I'll be fine whatever, I know this. I don't think he will be. Well, he isn't!

WhereYouLeftIt Mon 14-Dec-15 21:06:52

Honestly doitanyways, your health and wellbeing are already compromised. "I'm utterly drained. I think this moment has been coming for months but I'm just so very tired of it all."

LIZS Mon 14-Dec-15 21:17:35

You can't go on like this. He needs to find another sounding board, but not someone who will just say what he wants to hear. He has MH issues, could you speak to his gp, would he listen to them? Realistically he is in no place to work let alone at whatever profession he qualified in. Would he volunteer somewhere that could benefit from his experience to date?

Lazyjane76 Mon 14-Dec-15 23:13:36

I really feel for you. I've been in a similar place with my brother but rather than autism it was psychosis. This was a few years ago, I found out he was seeing a counsellor - I rang to speak to her, didn't ask for any information or to break any confidences just wanted to tell her my concerns. In her wisdom she told him I had called, cue weeks of abusve messages about me undermining his therapy culminating in serious threats to kill me. He was obsessed with conspiracies convinced he knew information that would 'bring down the banks'. The only thing I could do was call his GP with my concerns and ask him to keep an eye on him. After that, step back. It's all you can do but I know it's not easy.

lilydaisyrose Tue 15-Dec-15 17:40:46

How are you today?

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