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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:
LIZS · 23/01/2016 18:48

It doesn't matter if you are a ft carer or not , I think there would be support available to you via that route. You really need someone to help you re-evaluate the situation who is not directly involved, give you tactics to enable him to access assistance in budgetting and self care. He is clearly intelligent so playing to this side might achieve something. How do his friends support him, or is he spending money pleasing them?

Parkandfly · 23/01/2016 18:48

There isn't anything that can be done, darth, although I agree the majority of posts are trying to help and I should have acknowledged that.

Unfortunately though at least two people are trying to start a row, and I wish they would not!

The thing is, and I don't just mean you here but there is a mumsnet school of thought that just sympathising is useless.

It isn't.

'Oh poor you' might be.

Someone saying they understand, that it's hard, that they've been there too or they know someone who has, that they hear me - that helps.

OP posts:
Parkandfly · 23/01/2016 18:50

LIZS, there really wouldn't be and to be honest the last thing I need is MORE running around and pressure to go somewhere.

He has very few friends; the ones he has are from a long long time ago and occasionally have a drink with him but as far as I can see this is out of kindness. I know he's been excluded from a few big events like 40th birthday parties - one quite bluntly said it was because he didn't know how to behave in public.

You are quite fixated on this idea that he is loaded. He isn't. He hasn't worked for nearly a year.

OP posts:
LIZS · 23/01/2016 19:02

You said he gets £650 per month via your lets. It isn't that he is loaded, but perhaps his spending isn't in control. He certainly isn't accessing the benefits which might be available and to an extent you are enabling this. Agree with pp that you have become closed to suggestions, to a worrying extent as regards your own MH. Please look out for yourself , if you break down what will he do then .

Parkandfly · 23/01/2016 19:04

Look, I recognise people have posted in kindness but there is not one suggestion that will help because autism has no cure as you know.

OP posts:
captainproton · 23/01/2016 19:07

Park, I think I understand in some way. You've lost your parents, your brother is probably not going to get better and possibly his situation will get worse.

It's just you, and when you look at other people leading happy lives at Xmas and birthdays and you realise that's not going to ever happen with your brother.

You have a hope on your head if X and then Y happened then everything would be OK. And the answer is so painfully obvious, and it drives you mad that this person is not only wrecking their life but ruining yours.

I agree there is no point thinking up solutions because as you say your brother will probably refuse to accept any help. There is no point in thinking any external agency is suddenly going to get involved because your brother doesn't want help, and even when things might get worse it's all s bit of a lottery whether help is offered or not.

having been in your situation, I would never expect any of my children to give up their lives for a sibling/parent with MH or addiction issues. I would drum it into them that it is not their responsibility.

Devilishpyjamas · 23/01/2016 19:39

Have you had counselling park? I was forced to have some when doing a program with my severely autistic son many years ago. I thought it would be a waste of time, but it was actually one of the most useful things I did & it's got me through many years. I had 6 sessions with someone very experienced at working with ASD families & children.

You are right you can't do anything to change your brother's situation but counselling might help you cope with that. Needs to be with someone who will understand the dynamic though. The sessions I had were useful because she had so much experience.

I'd recommend it.

Parkandfly · 23/01/2016 19:57

I have thank you.

Captain, there's some truth in what you're saying but remember, I was very young when my mum died, my dad had pretty much a mental breakdown (I always glossed over it by saying he went 'a bit peculiar' when she died but the more I think about it the more I suspect there were underlying issues dating perhaps from their childhoods even. I guess there comes a point where untangling the wires is pointless!)

From a very young age, from before I even became an adult, I have had to look after myself and that's not always been easy. I think my inner resources are very strong and that's pulled me through but one thing I don't do is wistfully look at other lives and think 'what if.' Because it's totally pointless and destructive. I think I'd go insane if I did!

What I do have is a firm idea of what I want from my life. I love travel and have done quite a bit of it and plan to do more; I do have many loyal and solid friendships, I LOVE home stuff as I call it and am constantly planning stuff to do with my flat; I love to read and I love animals - horses and dogs especially but also like anything with fur. Or feathers (or fins!)

I want to be a Mum and I want to have a home and a garden and animals and holidays and books.

It's about he future to me not the past. And my brother - he doesn't fit in so easily. It frustrates me that things that are 'easy' he can't do and then I feel guilt this isn't his fault. I feel annoyed and irritable and edgy round him a lot and I don't display this outwardly but sometimes I'm going through a tough time myself and he just doesn't see it, even if I stand in front of him saying it!

OP posts:
MsAdorabelleDearheartVonLipwig · 23/01/2016 20:32

Please don't jump down my throat but do you have depression? Only you sound just like my DFil. He has depression and his answer to everything is I can't, it won't work, there's no point, it's a waste of time, I can't do it. Please at least go and make an appointment with a doctor for yourself. Even if they just listen to you, it's a start.

Parkandfly · 23/01/2016 20:36

I definitely do not have depression.

OP posts:
meandyouplustwo · 23/01/2016 20:56

autism is the most frustrating condition for the those who have to live with it
I know he doesnt have a firm diagnosis but you seem pretty sure he fits the spectrum. then you will know that he doesn't have a good understanding of how his behaviour affects others . he may even have found a pattern of interaction with you that works for him , complaining , but is draining for you.
he will not be concerned with a messy house and may even found it very disturbing that someone wants to move things from where he has placed them or even worst get rid of "his precious things" that look like rubbish to you and me. you mentioned him taking public transport in the middle of the night , perhaps he enjoys travelling too but travels when it is quiet and he is less likely to meet others and have to interact with them in a socially awkward way.
you didnt respond to my earlier post suggesting you got support for yourself and have become angry at suggestions you get support yourself through your gp or counselling to give you individual time to say what you are feeling.

you mention what you want in your last past - nothing unreasonable there , life doesnt always turn out as we want but we can all dream and some people actually get what they want , a lucky few.

wonder what your brother wants , you haven't mentioned that , i wonder if you have had that conversation what he said ? If not what stops you from asking him if he is able enough to respond.

Many people with autism want to be left alone to do what makes them happy and not be expected to be a aquare peg fitting in a round hole . His life hasnt been easy either by what you have said. He has also lost two parents and is now clinging to you as his next familiar person.

you mentioned the phone calls , what else does he ASK you to do ? are you really hearing what he wants ( to stay in by what you said ), or what you want him to do. ( stop talking about himself? )
I get it.......his house is a state but its not your house , you visit and leave you dont have to live there, He has rights to live as he wants except if it affects others , im talking anti-social beh , does he have any police involvment except narcotics ? or is he just a "a little odd but harmless"

You may not like this suggestion but there is a really good film called SNOWCAKE main character played by sigourney weaver based on ros blackburn who is a person with autism and really shows how tolerance is needed by both those with asd and those without.

all the best x

QuiteLikely5 · 23/01/2016 20:56

You are very rigid. You brother is who he is, you state autism cannot be fixed.

If nothing changes, nothing changes.

Such a true saying.

All you need to do is reduce contact, accept that your brother is a troubled individual and accept that he can look after himself. If he couldn't he would truly be on the radar of SS.

He is not going to have some horrific disaster if you withdraw slightly from his life.

If anything, you ought to contact his GP, the one who you state he sees everyday and ask them for advice.

Stop assuming responsibility for your brother.

He is capable without you. That is a fact.

flippinada · 23/01/2016 21:02

Good post Quite. Does the brother actually need this level of care? Might he not be quite content being left to do his own thing?

QuiteLikely5 · 23/01/2016 21:04

Thanks flipinada Grin

Parkandfly · 23/01/2016 21:06

So nothing changes - I think I've been consistent in saying and explaining this.

It's stalemate. His version of the world is:

He is a talented, intelligent person with a degree. Next week or next month, he's going to get a job and then he'll buy a new home and he'll get a new car and a girlfriend and life will be great. The reason this hasn't happened yet is a combination of the professional body who dismissed him and his ill health.

The true version of events is that he's going to struggle to get a job and if he does he won't keep it. He's fast approaching 40 and has worked for 3 years all in all. He won't sell the house as it is and he struggles with relationships.

So ... It's not easy. His version of events and the reality are vastly different.

I'm not angry but people are misreading what I said - like the public transport - sorry, what? Hmm Smile

For those who've decided I'm an interfering bossy sister, i am anything but and you just don't know what I do. I could have kept that £400 a month and left him too it, I don't, as I do care and I want him to be happy and try to get as much enjoyment from life as he can. For instance he's a member of a gym and I applaud this as its vital for his wellbeing.

If he didn't see me he would see no one.

If I didn't do the little I do actually do - who knows. I guess we'd be looking at best an existence. Fine if he was happy but he isn't.

At least try to understand; I get the it's-not-easy-for-him - but this thread isn't for him. For once it's about me!

OP posts:
RandomMess · 23/01/2016 21:06

Could you afford a therapist for you, someone who can help you "deal" with the feelings you have towards the situation and your brother that can be there for you wholly for an hour per week? It may be enough support so that you can somehow "park" the situation with your brother enough so that you can do what you can to help without being dragged down with him?

QuiteLikely5 · 23/01/2016 21:08

well his plans look quite exciting to me!

But you say he's unhappy??

Parkandfly · 23/01/2016 21:10

I have had counselling and it wasn't helpful in a way but at the moment I am struggling to fit everything into my day :)

Quite - I'm sorry, I think you have totally misunderstood something and I don't know what.

OP posts:
flippinada · 23/01/2016 21:17

What would happen if your brother was left to his own devices - say, for example, you were taken ill for an extended period and couldn't get round there. Would he cope?

MsAdorabelleDearheartVonLipwig · 23/01/2016 21:18

Did you say he goes to the gym?

RandomMess · 23/01/2016 21:18

There is a significant difference between counselling and therapy just in case you decide to pursue it as something to help you.

Perhaps at the moment you do just need to give yourself a break from dealing with him because of the fact he drags you down? Perhaps you can just tell him you're away for 4 weeks so you don't have that exposure to him. Are you at a point where you truly are at a "I can't deal with his shit at the moment"?

Quite - is plans are all fantasy so no they don't actually make him happy...

Parkandfly · 23/01/2016 21:23

Flip - part of me suspects he wouldn't notice!

I think possibly he would 'exist'. At the moment a typical day for him consists of getting up very late (around 3) and then goes to the gym about 5, he will go out for a takeaway at about 7 then read and watch crime stuff on YouTube.

He sometimes goes to the library in the middle of the night. Sometimes comes to see me. He has a cat. Will sometimes go to the doctor or pharmacy in the day.

So he can exist. But I imagine long term he might not be able to carry on and things would reach a crisis again. I don't know though. I guess I just wish things were different. That was my dads house and it upsets me to see it so disgusting.

OP posts:
wannabestressfree · 23/01/2016 21:28

I think what quite means is that you seem to be unhappy for him and worry about all these different things but actually if he is ok in his own world leave him be and try and switch off....
It's your reality your trying to force on him but that's not going to happen.
I don't mean this in any way narky or getting at you.....

QuiteLikely5 · 23/01/2016 21:28

Park

You said in your brothers mind he is planning to get a house job girlfriend etc

Surely those thoughts make him optimistic?

But you said he isn't happy..........

Even though you know those things won't materialise interred no harm in him hanging on to the prospect of them..........

You did not respond to my other post........

How about accepting your brother is vulnerable........let go of the responsibility..........trust me if he is a fire risk, health or safety risk to himself or others he will come to the attention of public services

Just know that the net is there to catch him......you don't need to carry him

QuiteLikely5 · 23/01/2016 21:30

Yes wannabe that's right, I think op is having trouble accepting his reality.........

Park, his problems aren't yours