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

(256 Posts)
Parkandfly Fri 22-Jan-16 17:22:49

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.

MsAdorabelleDearheartVonLipwig Fri 22-Jan-16 17:27:52

You need help. You need an adult support service to step in and take some pressure off you. Have you spoken to any Customer First type group? They could get a social worker out to you and assess him and see if they can offer any care. There are also support networks for carers; financial, day to day, etc. You can't do this on your own and you don't have to.

Do you have a life of your own? You don't live with him do you?

Parkandfly Fri 22-Jan-16 17:30:01

Trust me, I feel I am going to sound very negative but SS will do nothing.

He is (from their POV) fine.

Even if they decided he was not fine he would never accept help.

My choices are to carry on as we are or accept he is going to die and this would probably be suicide if not directly (hanging himself) through an accidental overdose or something.

SavoyCabbage Fri 22-Jan-16 17:30:50

You poor bugger. It sounds absolutely horrible. You need some help. You shouldn't have to be doing everything like this,

Stradbroke Fri 22-Jan-16 17:33:13

Do you have a carers centre near you? Have a look here
You are at breaking point and he needs support (as do you). Get some help, talk to some people and take a step back if you can to let adult services take over.
Does he have as ASD diagnosis?

Parkandfly Fri 22-Jan-16 17:34:52

He won't let adult services take over. He goes berserk if you mention autism or ASD.

kissmethere Fri 22-Jan-16 17:36:54

Oh boy you're at the end of your tether.
What kind d of relationship does he have with his GP? On the other hand would it be a good idea for you to go and see yours to see if they can advise a way to improve both your situations . Or point you in the direction of some support. He's obviously NOT ok if you think suicide could be on the cards.
I have a cousin who is high needs and my aunt was cracking. In the end the GP was really helpful.

SavoyCabbage Fri 22-Jan-16 17:37:07

You aren't fine though. Whether SS deem your brother fine or not. Maybe we would all be dandy if our siblings sacrificed their own happiness for us, but that's not the way life works. You matter too.

There are lots of people who would rather that their family looked after them all of the time rather than outside agencies, but again that is not always possible. It it were there wouldn't be care homes for the elderly or services such as meals on wheels.

Akire Fri 22-Jan-16 17:37:51

When you said sole carer sounded like you lived in and he needed 24/7 support. Are you trying to support him whilst holding down a full time yourself? Or are you spending most of the waking hours at his home?

You don't have to be his carer. I know it may feel like it's your duty etc but I'm disabled I would hate it if a family member felt the same about looking after me. (I use paid carers funded by myself and social services). You could still provide a valuable support to your brother and looking out for him without spending everyday there.

Contact his social worker and arrange a care assessment he has a right to be supported, best to do it before it runs you down and you end up needing care yourself.

There are other options around like shared accomadatimg with live in support but you will probable have to be brutal honest with Social Services about how difficult things are or else they will offer the lowest they can get away with.

Parkandfly Fri 22-Jan-16 17:39:53

His GP is probably the person he sees most after me, he goes most days. He is a complete hypochondriac and takes numerous prescriptions.

He doesn't have a social worker, and he would go utterly apeshit at the suggestion of live in support or any support really.

PeppasNanna Fri 22-Jan-16 17:41:39

Op. I couldnt not reply.

I totally understand how you feel. Both my sons are diagnosed with ASD. My dad, uncle & brother are clearly on the Spectrum but never diagnosed.

I will post again later but just want you to know your not on your own. Its fucking mental & its hideously

Akire Fri 22-Jan-16 17:43:01

He may not want SS involvement but you can't do it either. The assessment for care is based on certain questions and scores so if he is at risk of sucide he will get points for needed support. If you say he may die by accident it shows he lacks understanding to look after himself safely by not setting house on fire or taking meds correctly etc. They may fob you off with a brush off but insist on a review. You are legally entitled to a review as a carer so even if he had one recently you can push for one for you.

If you are a carer on carers allowance he has to be getting DLA/ESA so he has already proven needs

Parkandfly Fri 22-Jan-16 17:46:11

Trust me SS is a non starter. I don't get carers allowance and he won't claim Dla or pip. He will not engage with anything or anybody mentions sutism

LionHearty Fri 22-Jan-16 17:50:47

What do you want OP? How much do you feel you want/can do for your brother?

To be honest, you are held to ransom by his rigidity. But change is necessary. You can't continue like this.

Parkandfly Fri 22-Jan-16 17:51:44

I just want him to disappear.

BlueSmarties76 Fri 22-Jan-16 17:54:54

So, am I right in thinking:

- his substance abuse issues are not current
- he does not clean even though he is capable of doing so
- he has personal hygiene issues (eating?)
- he has poor social skills
- he cannot hold down a job
- he is selfish and self centred
- he is demanding of your time and energy

If the above are correct, I suggest:
- letting his JSA run out and encouraging him to find a job stacking shelves or whatever or just accept the fact that he will spend his life on benefits.
- write to the GP (who obviously won't discuss his case with you) and explain he used to have an opioids addiction and is a malingerer.
- tell him that if he wants to see you then it must be on your terms. Tell him you don't want to come to his house until it's been cleaned up a bit (enough to not be a health hazard at least).
- DO eat out with him. If he eats and drinks disgustingly, it is probably due to the Autism / lack of social awareness and you need to get over the embarrassment (and if possible teach him the correct way to eat).

Parkandfly Fri 22-Jan-16 17:57:12

Your assessment is right blue but your answers aren't unfortunately, his GP is well aware of his addiction and he won't claim benefits but he cant even keep basic jobs.

MilkTwoSugarsThanks Fri 22-Jan-16 17:57:14

OP, if it's too much you can just walk away. Honestly. It's OK to do that.

LionHearty Fri 22-Jan-16 17:58:46

I am sorry that things are so difficult. I would speak to SS, get everything out there and documented especially re:MH. Then, this is the hard bit, stand back. Decide on your limitations and sit with them.

Your brother may not like change, but if he doesn't allow other people to help, your MH will become an issue too.

Not an easy solution. I feel for you Park

Akire Fri 22-Jan-16 17:58:53

If he's certain he dosnt need any support from anyone how does he explain why he needs you to be there a lot of the time? Does he realises you then don't have time to work or do other things you may want to do?
In the meantime can you visit every other day and talk to
Him on the phone on the other days? Just to give yourself some head room?

kissmethere Fri 22-Jan-16 17:59:06

I'd be interested to hear what his GP thinks. I would drop them an email or try to book in and speak to them and explain how much this is affecting your well being.

BlueSmarties76 Fri 22-Jan-16 18:01:52

I can't really see what SS would be able to do anyway - the state doesn't really stretch to giving general social classes and isn't really in to preventing problems!

He doesn't currently have drug issues, I assume his flat isn't currently a health hazard, nor is his personal hygiene and he can afford to feed himself. So I think he falls firmly 'under the radar'.

Stressful as this must be for you OP, he really doesn't sound that bad! Have you read the thread on here about the woman whose neighbour is demented, paranoid, incontinent and sleeps outside her front door, knocking on it and shouting 24/7, while accusing everyone of theft? I'd say he sounds really bad, but your brother not so much (and SS are refusing to help him too). Your brother at least is meeting his basic needs, he is just a PITA.

LionHearty Fri 22-Jan-16 18:02:19

If doctor, ss, and mh team are all aware of the situation. Then you've done what you can. Time to step back. It's tough

BlueSmarties76 Fri 22-Jan-16 18:02:23

Sorry, X posted....

Badders123 Fri 22-Jan-16 18:02:58

I have no advice, but I really, really do feel for you.
I do not blame you at all for feeling as you do.
How do you help someone who refuses to see they need help?
You can't.
Put yourself first. Because he can't/won't.

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