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.

Honestly I doubt he'd even notice! Except to develop some pain and it would be worse than mine of course.

Can you get a carer's check at your GP's? That may tell you what support is (theoretically) available to him.

As he has capacity he cannot be forced to do anything (as you know), so I think you have to tell him where your boundaries are - what you will & won't do & lay it out for him. If you have a carer's check (or similar) you may be able to provide him with a list of contact details for agencies & organisations that might help him (an adult AS/ASD group might be good? A lot of areas gavevthem now -the NAS may have a list. If he won't hear it, just write it down & hope he tries it out).

Leave the list, explain your boundaries (bluntly, but kindly), then do no more than you can. I know a few adults with various dx that need support - they have capacity so they will not get that support unless they seek it themselves. There is nothing that can be done about that.

I agree with others. You need to walk away. As awful as it sounds, a crisis is inevitable, and, as stressful as it may be for you when that crisis happens, it may bring some form of help for him.

What are his options financially when his JSA ends - will he have any income at all? Are you still giving him money? Do you plan to continue giving him money indefinitely? does he have anything left from what your mum left him?

I would make an appointment with the GP - both for your benefit, to discuss how you are struggling and hopefully get the carer review that others have mentioned, and your brother's - to flag up that a crisis is likely to happen with him soon, and hopefully this will trigger some sort of intervention or at least make them aware of the whole picture of his condition.

DO you HAVE to see him regularly? What happens if you don't? As other posters have said, his frequent visits to the GP mean that they will pick up if he is at serious risk (as opposed to just living a rather unpleasant life but not accepting help to sort it out).

No they won't. I think they just are desperate to get rid of him. We don't have the same GP and although I live in the next village it actually falls into a different county and this healthcare. I've never even met my gp actually. I don't get ill much.

Do ring your GP and ask about a carer's check. They give you blood tests & can provide you with advice on how to resolve problems (agencies etc). It would be a good starting point.

It sounds horrific. You have to change this now or you'll make yourself ill.

You don't live with him, do you? Do you have children? A partner?

You say you can't take a holiday - is that because you've used up your holiday time or don't you get paid for holidays?

I think the first port of call should be his GP. God knows he must be sick of your brother coming in every day. Tell the GP that if your brother isn't given help in some form or other, then you will have a breakdown.

What would happen if you took a step back? Do you normally visit him or does he come to yours? Does he phone you or do you phone him?

This reminds me of the poor woman in Love Actually but at least her brother was being looked after elsewhere.

I have just looked on the National Autistic Society website and it says:

'Social services departments are the departments within your local authority which are most likely to be responsible for funding any extra support a person with disabilities and/or a carer needs.

All carers have the right to have their views taken into account by a social services department when it is considering how best to make provision for a person with disabilities. The law states that when undertaking a community care assessment, social services must:

-consider whether the person has any carers, and if so, also consult them if the authority “thinks it is appropriate”
-take reasonable steps to reach agreement with the person, and where they think appropriate, any carers of that person, on the community care services which they are considering to meet his needs.'

And www.carersuk.org/help-and-advice/practical-support/getting-care-and-support has a page about how to get support.

Both talk about carers assessments which it sounds like you need. Maybe they need to assess him and say he needs little help in which case step away. What do you do for him and what do you think he can do himself? Is it that you're fulfilling a social need for him?

All in all you definitely need respite so go and speak to your gp and get some help from them - they might sign you off for a little while so you can get away from it all.

The carers website says
'How do I get needs assessment for the person I look after?

The local council has a legal duty to carry out a needs assessment once they become aware of the person’s potential needs. This means that anyone can request a needs assessment for another person. You can arrange an assessment by contacting the local council of the person you look after by phone, in writing or on-line, and asking for one.'

So they must assess him and take into account your needs. Make a list of everything you do for him and all the things he needs help with but refuses.

Her brother hasn't actually been diagnosed as autistic, though. He does sound as though he has serious mental health problems (which the drugs clearly haven't helped) but does he sound as though he's autistic?

Part of it says

'Due to care and support needs is the person you look after unable to meet two or more desired goals or outcomes?

The desired goals or outcomes are:

eat properly and maintain proper nutrition
maintain personal hygiene
manage toilet needs
dress appropriately
able to use and move about the home safely
maintain their home in a fit and proper state
maintain and develop relationships with family and friends
take part in any work, education, training or volunteering they may wish to
be able to participate in social activities, hobbies and make use of public transport and local services
look after any children they have responsibilities for'

Sounds like he can't do more than 2 of these things without support

The carers website is not for autism, just carers in general. I would say an assessment of the cause of his circumstances would follow a care assessment.

Only in relation to him constantly losing jobs. Could he get an online job as there would be no social aspect. As he has managed to complete two courses he is obviously bright but not able to function in group situations. Working on line might be possible.

park

Your mental health is as important as your DB.

If you need to reduce the time spent with him for your own sanity, then do this.

You deserve a life and a happy one at that. Please contact the carers link above and I would even visit your own GP to get a general well being check.

Is that right that DB hasn't been diagnosed as autistic?

Listening to your posts, they don't scream autism to me, but I do get the sense of someone with a personality disorder.

Hard as it is, it sounds like he has become increasingly dependent upon you, to the point that he is not taking any responsibility for anything. If I were working with you as a family I would be suggesting that you inform him of the boundaries of what you will and won't do from this point forward and help him develop alternative plans.

For example (and it is only an example so don't get hung up on this), you currently support him financially and as a result, he won't claim what he is entitled to. You could explain to him that with effect from 1st April, you will no longer be giving him X amount of money per month, however you will help him to apply for Y benefits. If he chooses not to do this, you will give him contact details for CAB and he can work with someone else to do it.

Give him a rationale, your decision, a solution and a contingency plan. If he chooses not to take that on board it is his decision. Presuming that he has the mental capacity to make that decision, if he doesn't then he needs a health and social care assessment.

Thanks for advice but honestly there's nothing I can do.

He couldn't get an online job. Only the field he's trained in will do. Besides he can't really use computers properly.

I have reread your OP, I don't think he is autistic from what you have said, I suspect that he has a personality disorder.

The sense of helplessness coming from your posts is palpable but you really can address this. There is something you can do, you can't change him but you can change his interactions with you by changing your behaviour and the way that you engage with him. If you do this, he will have no choice but to change.

I also wanted to say that many people with undiagnosed mental health issues can abuse drugs/alcohol.

Also, with autism some behaviours can be learnt (positive/negative).

What I am trying to say is that he has probably learnt that doing X to cause some form of chaos, you then help him. He now needs to unlearn this behaviour.

Trust me, he's autistic.

Obviously you will know more than me, do you think there are other things happening too?

What are your thoughts about the rest of my post?

There's nothing I can do. At all.

I think going to the GP for a chat and a carer's review sounds like a great idea.

As far as SS go, I think there would need to be a crisis to trigger any action... You mentioned he 'lives knee deep in shit', how bad is it? Is it like some of the houses of hoarders you see on TV with massive piles of old baked bean cans etc? I'm thinking that if it is, then that might be enough to trigger some action from social services?

As for lurching from crisis to crisis, unfortunately that's something a lot of people do, and unless he is having substantial issues such as drug addiction again then I don't think SS would do a thing.

I think perhaps you need to outline (in writing?) what you are part to do for him and what you aren't. If he wants any help beyond what you can offer, he will have to go to SS or similar.

Also, what is his financial situation? You said JSA runs out fairly soon, but what other income does he have (the family money? How long will that last for?).

As an aside, Didn't you say he had two degrees? So must be reasonably intelligent? Would he be motivated enough to take a masters and see if he can get a job in academia as a researcher in his field? I'm only suggesting it as I think it can be quite similar to being a permenant student and you didn't indicate he had difficulties completing the degree?

He has a masters. What he doesn't have is any work experience and he's fast approaching 40.

That said he isn't a genius either

I guess that there must be much more of a back story to this which is why you feel unable to act on any of the suggestions, and no one here can help or advise you with it without that back story. I really think that your GP would be a good first point of contact, that way you would have an opportunity to really talk everything through with someone.

Autism or not its one fairly dominant element of a personality but an intelligent person(he must be too have completed two degrees) can learn/ be taught to behave appropriately in some settings and have some self control.

He can learn not to bellow your name in the supermarket. He can be taught to set an alarm and have a wake up routine when you've arranged to go out - he's held down several jobs so must have managed this some of the time. It may well be that if you're going out you need to message him the night before and run through the list of things he needs to do to get ready in time to meet you.

I think you have boundary issues. He's pushed yours so far that you feel completely dominated.

Could you write down everything that really gets to you and work out which things are the worst. Prioritise them and then tackle one at a time to work on?