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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:
expatinscotland · 22/01/2016 18:05

I would walk away. Yes, I would. You deserve to have a life.

Badders123 · 22/01/2016 18:09

I agree with expat.
The GP is aware of his issues (whether they are real or not) and you really need to just leave it to them.
I know it's hard when you have always been the "go to" person but - for your own sanity and health - you need to back off/instigate some new ground rules.

ShesGotLionsInHerHeart · 22/01/2016 18:14

Park I really don't have any useful advice I'm afraid, but just wanted to post in support of you.

You sound at the end of your tether, and quite defeated. I hope someone has a suggestion that might help. Flowers

SoThatHappened · 22/01/2016 18:14

You are such a good person. My sibling couldnt give a fuck about anything that happens to me and she burdened me with mental illness when we were younger.

TBH callous this may sound....you only get one life. Walk out. Leave him.

PeppasNanna · 22/01/2016 18:15

Blue Op brother is Autistic not a PITA.Hmm

expatinscotland · 22/01/2016 18:16

Do you live with him? Because seriously, I'd move out. I'd rather live in the street than with someone like this, sucking the will to live out of me.

PeppasNanna · 22/01/2016 18:18

Im absolutely gob smacked!!! The mans AUTISTIC FFS!!!

Shocked by the responses im reading on this thread!

amarmai · 22/01/2016 18:23

op you are not his mother. You do NOT have to do this. His father was no help and leeched on his son when he needed a place to live when his gf kicked him out. You need to set yourself free, op.Get counselling from someone who thinks you have the right to live your own life.

Parkandfly · 22/01/2016 18:23

I don't live with him no thank god

Peppa you know it's possible to be both :)

That said I think there is some misunderstanding here, by blue, I am not saying he is as bad as it gets, I am saying everything falls on me, and me alone.

OP posts:
Parkandfly · 22/01/2016 18:23

NO my dad didn't Shock

OP posts:
expatinscotland · 22/01/2016 18:25

Peppa my son is autistic. If I were this person's sister I'd walk away. Why? because he isn't allowing her to get help helping him. She deserves a life. She's not his mother. If it were my son I would not want to see my daughter give up her life for him, especially if he were like this brother.

Baressentials · 22/01/2016 18:27

peppas the op is at the end of her tether. What do you suggest?

Op it is ok to say you can't do it anymore.

PeppasNanna · 22/01/2016 18:29

Absolutely Park!. My dad is a real PITA because of his Autism. My older son can be too. I treat my boys very 'normally'. But ultimately they are Autistic.

To give you an idea both my boys are in Special school's as no mainstream school would keep/ take them.

Have you tried charities like NAS, Resources for Autism, Kith & Kids, local charities. Even if he wont engage, they might be able to give you advice or direct you to support.

Badders123 · 22/01/2016 18:30

It's not a case of "how bad he is"
It's a case of op not being able to cope with the demands on her time, emotions, and mental state.
Not to mention the money.
Op....you can see the vast majority of responses are supportive.
I hope this gives you some much needed support X

Badders123 · 22/01/2016 18:31

Peppa...the ops brother is an adult! What do you suggest she does!?

IrenetheQuaint · 22/01/2016 18:31

How difficult. It sounds like you've reached your limit, and that's OK.

Can you give yourself a month off from any contact with him, maybe say you are very busy with work or something? Then set very firm boundaries for any future contact.

expatinscotland · 22/01/2016 18:33

He doesn't want support, Peppa. He goes ballistic. How is the OP going to get 'support' for him to give her a break if he won't accept it?

Parkandfly · 22/01/2016 18:34

I kind of wish he was bad enough for specialist intervention but he's not.

OP posts:
expatinscotland · 22/01/2016 18:36

You deserve a life, Park.

Parkandfly · 22/01/2016 18:36

It helps a lot to hear that.

OP posts:
annandale · 22/01/2016 18:41

I think the previous poster who suggested going to your own GP is in the right. Get your blood pressure and emotional state checked, plus any symptoms you've not mentioned. Take on board any advice they give.

Then book a holiday - a long one. Could you get three weeks off work? And go away - youth hostelling on the South Downs Way, or staying with a friend, or three weeks of sun in Tenerife, or anything really as long as at least some of it is not spent at home. Leave your usual phone at home and take a cheap phone that your brother doesn't have the number for.

It seems that your brother is functioning fairly well because of all the support you give him. Or just possibly, he would manage at this level anyway. My guess would be that if you go away for three weeks, some sort of crisis will happen - and you know he goes to the GP frequently, so he can raise the alarm - and it will become clearer what his needs really are. Or alternatively, it will become clear that he actually sort of manages anyway - and you can start saying No a bit more often.

I don't know though. My main feeling is how much I admire you and how much I hope you start living more of your life for you.

LeaLeander · 22/01/2016 18:43

You deserve to live your own life and be happy. You have tried and done a valiant job. You have no control over his choices. It's a bad break for him to have this condition but it's not your fault and not your responsibility. I am usually all for family members as the first resort when someone is ill or disabled but in this case he will not accept the sensible interventions or support services, etc., and you are getting no help from his GP etc. Why should you bear the brunt of all of this? Answer: You should not.

Free yourself. You are not a bad person for wanting that.

Parkandfly · 22/01/2016 18:44

He's not functioning fairly well at all unless fairly well is living knee deep in shit and not working and lurching from one disaster to the next.

It really doesn't help me to learn other people's lives are worse.

And I can't just go away; I have to work.

It's just shit this is life!

OP posts:
Parkandfly · 22/01/2016 18:45

Sorry that's tiredness and fed up ness talking; I haven't been home yet and I'm tired out.

OP posts:
Gazelda · 22/01/2016 18:47

Park How would your brother react if you became seriously ill and unable to support him?

Is there anyone else you both know you could get to talk to him? Make it clear to him how his refusal of outside support is breaking you? Are there any other relatives on the scene, do you have a DP or DH?

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