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Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

I am the sole carer for my autistic brother and some days I find it so hard

255 replies

Parkandfly · 22/01/2016 17:22

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.

OP posts:
Parkandfly · 22/01/2016 20:48

He really can't. Maybe if I was his parent and he was my child and he was a lot younger he could but we are way past the point of 'teaching ' him anything.

My GP has never met me. Last time I wen to the doctor was 2012 and that was in another part of the country. I don't really 'do' doctors as support.

OP posts:
VoldysGoneMouldy · 22/01/2016 20:50

If you are completely sure that SS etc are not going to be of help, then all you can do is look after yourself. Speak to your own GP about getting some support, and back away from him. It's okay to say you can't cope with this.

Parkandfly · 22/01/2016 20:51

And sorry - what "held down several jobs" he has NEVER held down a job.

OP posts:
FusionChefGeoff · 22/01/2016 20:55

You do say in your OP he kept a job for 2 years - that's a good length of time in my book.

If your excuse for not exploring all options is that you don't 'do' GPs then that's very defeatist.

You need help but aren't willing to ask for it. Sounds just like your brother I'm afraid!

BlueSmarties76 · 22/01/2016 20:56

Sorry, I said Masters, I meant PhD!! As he has a Masters, he could apply straight for a PhD and then try to get a Post Doc job after. If you're specialised enough that you have a PhD then job experience probably wouldn't matter.

Yes, I agree there is probably more backstory we haven't heard... Basically thugh, I think our advice is do what you can but don't feel guilty for not doing more, and hope he realises he has to help himself.

Flowers
Yseulte · 22/01/2016 21:01

Have you spoken to your local disability advice service?

They can apply for benefits on his behalf - write the form for him - if he's not responsible enough to understand he needs them.

Parkandfly · 22/01/2016 21:02

The is absolutely no way he'd be able to do that, blue. No way. I doubt he'd ever be able to work. I don't think there is more backstory and I tried to include relevant things in my op, but you've just made me feel like I'm making a fuss over nothing.

Fusion, I don't think I said 'I don't do gps' but what I'm trying to get across is I barely go, I have no relationship with my current one (don't know them and they don't know me) and I'm afraid I can't see how they could help.

OP posts:
Parkandfly · 22/01/2016 21:02

He wouldn't let that happen Yseulte.

OP posts:
flippinada · 22/01/2016 21:04

This sounds exhausting, stressful and claustrophobic - I'm not surprised you're at the end of your tether.

Can I just ask, because it's not clear (apologies if I've missed anything) - does your brother actually need a carer? What would happen if you weren't there?

DancingDinosaur · 22/01/2016 21:04

You can request an assessment in your own right from SSD. If your brother won't engage I'd do that, at least the social worker might have some ideas or at least have knowledge of any resources that might help your brother, which in turn might help you.

captainproton · 22/01/2016 21:06

Park I have been in your shoes, a close family member unwilling to seek help or a proper diagnosis for mental illness. Then self-medicating on tablets and drink, relying on us and expecting me to give up my life to care for them.

I can't remember which professional it was I spoke to but I was begging them to intervene. In the end we ended up talking about me, how I was feeling and coping, and for the first time in 10 years I felt like I had permission to stop killing myself by putting my needs last. I was told that I could not rescue them, they had to want to seek outside help and seek treatment.

I asked 'what would happen if I stopped?' And I got told that my relative would probably hit rock bottom and only then possibly come to the attention of social services etc. If your brother is willing by then.

But to be honest there is always the chance that your brother may never overcome this and sort himself out, whether you are there helping him or not. And it's sad and heartbreaking but unfortunately we cannot always cure everything no matter how hard we try.

I had to think about what my relative would have wanted me to do if they were of rational mind. I know that if it were me I would not want anyone I love to sacrifice their life to keep me from falling because I couldn't and wouldn't accept help to stand on my own two feet. By the time I was ready to accept that I was on ADs myself and feeling suicidal, 2 people were now suffering with no end in sight.

Taking a step back doesn't mean you don't care. You cannot solve this, think about what you are comfortable with, set some boundaries and stick to them.

Parkandfly · 22/01/2016 21:06

But dancing, how?

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.

They send a social worker around, brother blusters and says he does not need one and what is his sister thinking.

Social workers go away.

I've achieved nothing.

OP posts:
user7755 · 22/01/2016 21:06

Parkandfly - no one is saying that you are making a fuss over nothing at all. Everyone is being very supportive and trying to make valid suggestions for changing the situation, you are not taking these on board which is completely your choice but the reasoning behind that when things are so hard isn't clear - it is for that reason that I thought there must be more of a back story.

I guess that it is hard to hear those suggestions when you feel so trapped.

flippinada · 22/01/2016 21:08

Excellent post captain

Parkandfly · 22/01/2016 21:10

I know. But it's not me not setting the boundaries. It's more boundaries are set, trampled all over and then realistically what can you do? I don't think I am stressed or at breaking point, I think I'm BORED. I'm fed up of coming home happy and being dragged down, and sick of the stupid conversations that get us nowhere and so so fed up of the mememememememememememe nature of EVERYTHING.

I can't stand being his sister. We were always lumped together - our names used to be monotoned out by people 'Jack-and-jill' (not real names obviously) and when I was really little I sometimes copied him as I didn't know any better. At school my head of year 7 hated me because she hated him, and she didn't even know me and my whole transition into secondary was wrecked as a result. It's like I break free and get a breath of fresh air and then he drags me under again.

OP posts:
Parkandfly · 22/01/2016 21:10

User actually someone has.

OP posts:
BlueSmarties76 · 22/01/2016 21:11

That's fair enough regarding the PhD!

I'm not trying to make you feel that you're making a fuss over nothing. I understand you're really anxious about this situation and I understand that his life is shit, but some people's lives just are quite shit and his situation isn't utterly utterly dire (though granted its pretty bad!). Added to which, it sounds like he is responsible for some of his problems! He could seek help and could apply for more benefits but chooses not to. So I think he needs to take responsibility for declining the help and not come running to you so much!

Can you clarify his financial situation? When will all his money run out?

Parkandfly · 22/01/2016 21:14

Blue, you told me on page one that it wasn't that bad and to think about some poor woman who's neighbour was thumping on the window.

So forgive me if I'm a bit testy about engaging with you.

He could apply for benefits but there's no guarantee he'd get them, and in fairness, he sees himself working. Unfortunately he won't keep any job he gets and I know this and he doesn't.

OP posts:
Yseulte · 22/01/2016 21:16

The point at which SS and community health will be forced to step in is when he gets to crisis with no support.

As long as you're there they don't need to step in.

I don't think you can actually look after him on your own, you're going to end up with a breakdown.

It's really tough, think you'll have to leave him to fend for himself for a while, keeping an eye from a distance. If he ends up with no money, starving, in danger, you can call the appropriate service.

DancingDinosaur · 22/01/2016 21:16

Hmm. Thats complicated. Ok, well you wouldn't go to the gp anyway, you'd contact SSD and request an assessment for yourself under the care act. So, as your brother is in a different LA I would approach his LA for that, at least to start with and take it from there. Under the Care act LA's are supposed to work together where necessary, which in the past they haven't so much, although its still a learning process as the Act is still relatively new. I can't really see what other option you have apart from asking for help, for yourself, and taking it from there. Because you can't carry on like this can you. You have to do something, and its as good a start as any.

Yseulte · 22/01/2016 21:17

*but I think you'll have to

flippinada · 22/01/2016 21:19

I do feel for you, you sound utterly exhausted and pretty depressed yourself. That's not unusual for carers.

As a first step to get some help for yourself, why don't you contact a carers organisation, if you haven't already? There's a lot of really good ones about. Even just talking to someone who gets it can help you feel less alone and unsupported.

You sound very controlled by what your brother wants and by what he will (or won't) do. What about what you want?

Parkandfly · 22/01/2016 21:19

But he would point blank refuse that help, dancing, and truth is, not working, living in a messy house and being smelly might not be deemed a great life but it's still a fair way from a social worker and from care assessments.

It isn't the money anyway, it's the emotional toil it's taking on me and it's that I can't seem to make anybody understand.

OP posts:
Yseulte · 22/01/2016 21:20

I would just ignore Blue OP, she clearly doesn't get it.

Yseulte · 22/01/2016 21:21

Park, I understand. Other posters understand, maybe not Blue, but many people here.