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.

It's not entirely true that community health/SS won't visit him as an adult without him asking - he can be reported by someone else if he is not responsible for himself, is a danger to himself or other people.

This is going to be hard OP but you need to stop supporting him financially.
Then he's down to £250 a week. I'm surprised he qualifies for JSA on top of that income and owning his own property.

Then you need to stop visiting him. Then whatever transpires has to be dealt with by state services.

I'm it asking you to let him starve, but to let him freefall to a point where others are obliged to step in and take over your care role.

I can see he will never ask for help. He would never admit and likely genuinely does not understand that he has serious mental health issues, is ASD spectrum or an addict. That's part of his disconnect with reality.

There are many mentally ill people who think they're perfectly sane.

*not asking you to let him starve.

That sums it up beautifully. Really, it does. Complete disconnection from everything and everybody.

OP

I did not understand that you were not looking for people to offer solutions because there are none, and I assume that all the others who made suggestions did not understand this either. I will stop offering suggestions / solutions as I now understand it's not going to be helpful.

for your family situation, it must be very hard. Also, I do really sympathise over the issues with your brother. I do know how hard it is being in that situation, having cared / helped care for two disabled relatives.

But also....

No amount of sympathy will actually change the situation and nor will any amount of feeling negative about it. You need to take control and take action, even if the only action you can take is stepping back from him...... And please do not read that as me 'having a go' at you, I'm just trying to make you realise that all is not hopeless, even if it feels like it. I could just reply all day with "how awful for you" comments, but I genuinely don't think that's very helpful long term, and I just really want you to find a way out of this.

If the comment about feeling good about getting sly digs in was directed at me, then that's untrue. I've not made any sly digs at all.

Park I had to go no contact, changed my phone, moved away. I had to find myself, heal myself. I cried a lot, I needed help and I sort it out and I overcame it. In some ways I had it a bit easier because my relative was violent and I felt unsafe in their presence so it made it easier.

I think focussing on solutions for your brother is making you go in circles. I wish you the best of luck.

I did not understand that you were not looking for people to offer solutions because there are none, and I assume that all the others who made suggestions did not understand this either

What is this if not a sly dig - at the OP and other contributers to the thread.

I have an Autistic son, now 12. At one very low point I sat in on a meeting with a psychologist and he told her that i don't do anything for him, effectively he was abused.

I felt cut to the ground. His comments devestated me. She, the psychologist, was brilliant with me. She found some time for me on my own and said something along the lines of the thing with a condition like Autism is that the me-centricity is so intense that even if you gave 100% every waking moment it wouldn't be adequate. So rather than giving 95%, running myself into the ground, having no personal or relationship time and specifically not having time for DS2 why don't I go for a lower percentage in the knowledge that how ever much i give it can't be enough. It was actually a turning point for me. I don't get it right, he's still and always will be a massive part of my every day life but I keep just a little back too.

i'm sorry things look so bleak right now, but sometimes its in the dark moments of reflection, like this, where you find a new way forwards. I hope that even though its not yet clear you can keep the thread and on days you've got a bit of energy or time have a read through and see if it reads differently to you and just maybe if any of the advice might be worth a try.

Yseulte, he could end up losing his home, and being a social outcast could end up homeless. (Of course this wouldn't happen, because the poor OP would then feel obligated to home him!).
My experience is with a family member with MH issues, and believe me they practically have to be jumping off a train platform to get even very limited help, as there simply is no funding. I might be wrong, but I really can't see this guy getting much support - he just simply wouldn't be 'bad' enough.

Dear OP,
Your exhaustion with the situation is so clear. I can see that all of our attempted ' helpful' suggestions are not really helping.
Might I suggest that you step away now and have another look at the thread tomorrow? You sound a bit embattled and determined that there is nothing that can change. It may be that some of the suggestions re stopping funding him, taking a short break away yourself, not visiting, getting some support for yourself MAY feel different tomorrow.
Someone mentioned upthread^^ about not being able to change someone - all you can change is your own reactions / behaviour which might get a different reaction. There are lots of suggestions here and although none of them are likely to make a massive difference, change happens in small steps...

Yseulte

Oh give up, will you!

No, that was not a sly dig at either at the OP or other contributors. I genuinely thought the OP wanted solutions offered and was explaining that I didn't realise she didn't and that I don't think it's that bizarre that I didn't realise, given a lot of people didn't either. It was an entirely factual statement, not intended to in any way rile or insult the OP or anyone on the thread.

Stop reading malice into what's being said when there isn't any!

ParkandFly you sound utterly defeated and exhausted. Would it help if the MN community gave you permission/blessing to step back and disengage? I'm not being flippant or disrespectful you are exhausted and your brother doesn't want to accept support, its very tricky.

With your support your DB is coping and yes you are right SS will avoid taking any action. Personally I would stop giving him the rent money and so stop enabling his life style but I understand that its a big ask.

What do you want?

Alot of ASD people struggle to accept their diagnosis. I think that this is the first step which your brother needs help with but how you go about that, I've no idea. I would talk to an ASD charity / support service in the first instance to see what they suggest, lots of them have qualified people who can help him with this.

Dont feel bad about limiting your contact with him, make sure he has the essentials but after that, look after yourself first.

I'm fully aware of the of paucity of mental health services and lack of resources. It really depends on complexion of an individual's issues and circumstances. It also depends on the borough as there's a postcode lottery with regard to mental health.

In this situation, I think it would be a blessing in disguise for the OP if he ended up sectioned. Psychiatrists would assess him whether he wanted them to or not, if he were diagnosed as autistic a whole range of services and support would become available.

It would be hard for him to lose his home given he owns it outright. Generally people lose theirs because they can't keep up rental or mortgage payments.

Not just ASD, many people with mental illness refuse to accept their diagnoses too.

He's got quite a complicated set of problems. He may never accept that he has anything wrong with him at all. That's partly why he needs help.

It's not entirely true that community health/SS won't visit him as an adult without him asking

You're quite right to point out the defiency in my post, Yseulte, as I should have made it clear that no social care agency is going to visit unless he asks or he presents a danger to himself or to others.

My friend, who has tried every which way to plug her now middle-aged db into 'the system', has been praying hoping for years that he'll walk down the road stark bollock naked or set fire to his kitchen (in a minor way that causes no injury to anyone), but so far all he's done is play fairly loud music late at night on occasion and we reckon the neighbours must wear earplugs as no-one's complained.

That may sound flippant, but she's been brought to her knees with the stress of being unable to get anything across to him and being treated with disdain, bordering on contempt, whenever she's suggested helping him clean his filthy house, which has to be seen to be believed, or getting an agency in to blitz it and the garden which, needless to say, is inpenetrable.

To say he's hard work is a gross misrepresentation of the onerous burden he is to her and gives no indication of the sleepless nights she's had worrying about him.

Yseulte - to be sectioned, you need to be practically committing suicide. There is no funding. Hospital places are like gold-dust, and they are released as soon as possible.
It would not be hard for him to lose his home if he can't pay his bills etc.
He does not believe he has any problems (it is everyone else), and even if things did get progressively worse and he was sectioned, there is still absolutely NO guarantee that he would accept that he has problems - ie. it would then be the staff that had problems etc - you get the picture?

KeepCool

A suicidal state is only one mental health issue that can trigger sectioning, others include, for example, mania, psychosis, anorexia with low BMI, extreme self harm. The key is mental illness that needs to be assessed or treated, serious enough for your health and safety to be at risk or the safety of other people. The implication is that you are too unwell to make a responsible decision for yourself, or to understand that you need treatment.

I'm not sure why you're telling me that there's no guarantee that DB will accept he has problems. I've already said he may never accept it - on the basis of this thread, I'd say it's quite likely he never will. Psychiatric staff are well used to that, it goes with the territory.

Bloody hell, so many ridiculous posts on here! I know people are only trying to help - but the Op has said she just wants to let off steam and get some support on this thread. It would be much more beneficial for the OP if some of you could stop sniping at each other and stop suggesting 'solutions'.
Let the OP have some space to talk, FFS.

About the only good advice I've read on here - and again, the OP did not come on here looking for advice - is that the OP should put her needs as priority and seek help for herself.

for you OP. It all sounds utterly, utterly draining.

I agree with Yselte that many things can trigger sectioning, not just suicidality, however my personal experience was of watching authorities refuse to section or give help to a person who (due to Dementia & strokes) dangerously misused kitchen appliances (mistook the boiler for the cooker and would open both up and hold matches trying to light them), would eat only raw food, would be found by the police having forgotten where they lived, forgot how to drive a car but would still attempt to and was often incontinent, sometimes in public. (Plus everything happening to the aforementioned man on the other thread) Leads me to believe that unless you live in one of the 'postcode lottery' wonderful areas it could be very very unlikely sectioning will happen???

Yseulte - Get off your high horse. It can be very difficult getting someone at high risk sectioned. I know from bitter experience. You only have to listen to the news - there is no funding.

Thank you and I don't think Yseulte is being on her high horse.

I recognise it's a difficult situation as its unique.

It's unlikely he'll lose his home. It originally belonged to my dad and it's a fairly normal three bedroomed house with a garden. Some similar houses on the same street are immaculate with happy families in them. He pays the council tax, water, electricity etc without problems really. It was straightforward enough as after our dad died he just transferred bills from one name into the other.

But ... The house is dirty. There's nothing attractive or clean or welcoming about it. Various lights don't work, the boiler is broken, the garden is a tip.

He has been in a psychiatric unit before but only briefly and was not sectioned.

I used to think he had munchausens but now I think he genuinely believes every bit of pain he gets is agony

I don't think he's work shy but I do think high levels of anxiety make work difficult. He does bits of work through an agency but had an accident and apparently they have said they can give him no work until his face heals in case someone complains.

Hi parkitandfly - I really felt sad at your op and i have just read through all the posts and i can see that your op made people offer solutions because they thoughts that is what you wanted or needed. but you are clearly saying what you really want is for things to be different.

You want a brother who is independent of you , doesn't cause you worry , and as your only remaining family would be equal company to you.
As you know nothing can make that happen.
He is what he is and doesn't understand your need for him to change, he asks for your company but because of his condition is unable to support you in return.
I have worked with children / adults with autism and their families for 20 plus years and there is no fix. Hard but true sadly.
You need to give yourself permission to live your life without guilt that you are not there for him in the way you have been.

He has completed higher education, was that with your mum organising him ?
I ask that to get some idea of his capacity to organise himself.

It must be very difficult to watch someone falling outside the realm of "normal" and live a life that is considered risky but as with any MH related condition unless that person sees the need for help or is considered a risk to themselves or others they will be allowed to continue until a crisis occurs.

Your worst fear is that might happen and you will look at what you could have done to prevent it . But that isn't your job, you are his sister who because you have lost your parents at a young age has become his parent by default. You don't have to be.

Please be kind to yourself, you are entitled to be angry, anybody would be , and families of children with a disability can often feel anger and despair at their life being different to what they want life to be and not being able to change it.

It doesn't matter that your brother wont accept a diagnosis of Asd , you know him and see the characteristics. But you can accept help for yourself, have you thought of seeing if there is a support group for you through the national autistic society or accessing counselling for you so you have a breathing / angry space for yourself.(NAS will have a list of counsellors in your area who are familiar with asd, you don't want to be using all session explaining your brother to someone who doesnt understand the condition)

You have come to mumsnet to let people know how you are feeling (very valid feelings in my opinion)but I would suggest you need something more consistent and permenant.

I am suggesting this because I have a work colleague / friend (I'm a therapist working in disability / asd, she is too) who is exactly in your position , her parents both died in her twenties , her brother is older has Asd and living on edge of society. Her crunch point was working ,having children and not being able to be there for him and her small family. She found it really difficult in the beginning thinking about herself and her needs , she had done everything she could to "fix" things for her brother and become very despondent when it wasn't enough. After personal counselling she no longer feels she has to be his "everything". Nothing much has changed for him but she accepts that this is no longer her responsibility. Her brother like your brother attends appointments with his Gp but no other services. She writes to his Gp with any concerns so she is aware and its not my friends sole responsibility , she is now getting on with life , able to have her own life and sees him every 6 weeks when they go out for a walk/ lunch.
She is honest , while she says she doesn't exactly enjoy their meetings , she doesn't dread them any more either.

I hope this helps , i think reading through the posts most people who have replied really feel your despair/ desperation and that is why you have had so much "advice".

I hope you dont see my reply as somebody else saying - "you must do this"

You don't have to do anything different ,but you wont get anything different.
Nothing will change unless you do something different from what you are already doing.

Good luck I wish you both the best x

Parkandfly every bit of pain he gets COULD be agony. People with autism can either be hyper or hyposensitive to pain.

I wouldn't dismiss this or think in terms of munchausens :)

Good advice from meandyou. You can't fix him or his situation (unless it deteriorates to the point where he can be sectioned - and even then you'd only be fixing the immediate crisis). You need support to accept that inability to actually change anything.