Disabled DS is a nightmare. What can we do?

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DS is in his 30s and still lives with us. We are pensioners and both disabled ourselves in various ways. He has ASD, OCD and learning disabilities, although he can manage quite well day to day. On most days he goes out, either with friends or on his own. But when he stays at home he is very difficult. He can be very kind and helpful, particularly with me, but on many days he becomes angry and really nasty and abusive towards us. Today has been a nightmare with his abuse. He is very rarely physically abusive, but says the most hurtful and horrible things to us.

There is no way that he could live independently of us and so we continue to have him with us. I don’t know why I am posting, really, as nothing can be done. I just wish that the sweet, loving and kind version of him could overcome this cruel version. I feel in despair and so very sad.

Supported living- I’ve know lots of parents who thought that their child couldn’t live independently of them, with the right support package they can. Contact SS and push that you can no longer cope

Supported living- I’ve know lots of parents who thought that their child couldn’t live independently of them, with the right support package they can. Contact SS and push that you can no longer cope

Sorry to be blunt but at some point he will have to live independently to you because you will mostly likely die before him. Living without you doesn’t mean he would have to live without support. I would call adult social services.

Hi OP that sounds really tough. Have you spoken to the relevant social services about getting a carer’s assessment? You are legally entitled to one from the local authority. That would be my first step.They will speak about your needs as carers but also your DS’s needs.
Have you considered supported living for your DS?

Is there not a group home where he could live in your city? They do have individual appartments but there is staff 24/7 to help out.

My 15 y old ASD with heavy OCD is very verbally abusive as well. It's tough because they take it out on the people they feel safe with ; who loves them unconditionally. I do hope we will find another living situation for him later on because I can't see myself living like this forever. It's very hard and I empathise with you OP. Ask Social Services what kind of solutions they have if any.

He needs to go into supported living ge will have to when you die it's better that he goes now and you can help him settle and have some life

I agree that he needs a referral to adult social services. You need to try your get him supported living that he can transition to whilst you and your husband are around. It would be far more stressful if (heaven forbid) you died.

No advice really except to say I’m really really sorry. I know loads of disabled adults/adults with additional needs through work and while a lot do live at home it is rarely easy. Are you getting all the help you’re entitled to- social care package for respite, carers allowance, pip etc? I’m really sorry OP.

You need to contact your local adult Social Services and request an assessment

Thank you all so much. Just a couple of things to add. We recently moved house, but his behaviour was similar before we moved and we have only moved within the same town.

Also, I can’t imagine that he would cope living away from us. All I can think is that he would be ringing us for help and coming here crying to be taken back. I can’t bear the thought of him crying to come home. We are usually so close. I know we need to settle him somewhere before we die, but I can’t face that yet.

Supported living in his own self contained flat. I understand that you may not have had the involvement of Social Services up until now, but now is the time. They can eventually put a care package together for him and you should be involved every step of the way. You’ll be doing the right thing for him.

I’m currently having this debate with my elderly parents, as my disabled sibling lives with them.

From my point of view, the nightmare scenario is that they both suddenly become unable to cope and then it is a horrible rush to get my sibling assessed and placed somewhere (anywhere) else. It may not be the best place for them due to the rush, and they will certainly struggle to settle in without our parents’ help.

However hard it will be for my parents to make them leave, it will be a thousand times worse if they die without sorting this, and my sibling has to move to a new home, without their support, and while grieving.

This is a situation where you have to be cruel or hard-hearted in the short term in order to be kindest and do the best thing for him in the long term.

You need to face it! You say yourself you’re both pensioners. To be brutal, you are going to die sooner rather than later - my dad died when he was 68. And even if you live until you’re 90 you are well over 2/3 of the way through your life.

saying you can’t face it isn’t a plan, and it’s not fair on him or on you.

you need a plan asap.

I can’t bear the thought of him crying to come home.

He may well have the time of his life. Staff there to support, depending on the setting, friends to make. It could work wonders for you.

If you can't bear the thought of him living away, have you considered an annex or some other self contained accommodation for him still on your property? Not sure how viable that is for you.
There's also befriender support you can get for disabled adults which make take some pressure off you. Befrienders might taking them out for the day. https://befriending.co.uk/organisations-directory/

I totally understand how heartbreaking this is. I will be in your situation in a few years and if I could live forever I would, just so my DC isn't alone.
However, this is not a practical option! Hard and unnatural as it may feel, you need to start planning now for his life without you. First step would be a care assessment with social services.
Solidarity OP, it is all absolutely heartbreaking.

Agree - what plans are in place for when you can no longer care for yourselves, let alone him, or when you're no longer there?

Could you go for a halfway house?

Supported living so that he is a bit more independent, with you and your husband visiting daily at a set time every single day.

If you did that for a year it would help to get him settled but also give some respite for you from his behaviour. After the year perhaps consider moving somewhere smaller to emphasise that it’s permanent.

Gradually you could lessen your involvement whilst continuing to preserve the relationship….

Our family is very similar to yours. DS with learning disabilities, adhd, etc,etc. very close to us and loving but at the same time outbursts of difficult aggressive behaviour, etc. The only difference is that my DS wouldn’t be able to leave the house independently to meet friends, so very dependent on us for everything.

He moved some months ago to supported living. I honestly thought it would never work, he’d call us crying, wouldn’t settle. I was completely wrong. He has settled really well, we see him most weekends but always take him back to sleep to his own house to make sure he doesn’t get confused messages.

My biggest fear has always been what would happen to him when DH and I are gone, I feel much calmer now.

Please contact social services and get the ball rolling.

My DD has incredibly challenging behaviour and limited ability to communicate. We worry dreadfully for her future but we’ve had to be tough with ourselves and take the first step in making her independent. She has two nights a week away from us now. She’s in her early 20s and it’s been very successful, much to our suprise. She’s enjoyed having her time away from us but is always happy to come home so we know that she’s not ready for full time residential care yet. Taking the first step is the hardest but you owe it to your child to prepare them for a future without you.

DD1 is 19. She lives at home but stays at my parents when she wants to. Sometimes that's a few days, other times just one night. I visit every morning but it gives a little bit of a move towards the time when she won't be living with us.

I can’t emphasise enough how important get a move to independence done early enough. My sibling with autism and learning disabilities lived with my parents all their lives. It was a head in the sand situation because our parents couldn’t face their child living anywhere than with them.

first dad died then twenty years later mum got dementia. She was in her nineties and by then controlled by my sibling. The house ran according to his rules. She couldn’t get him into the shower so he stopped washing. Social services were aware but wouldn’t do anything because she had always said she liked him living with her no he said it was his house.

on the day mum died, at home, he was still living there and finally social services said they would start to look for somewhere for him to live. In the meantime he was left on his own with a couple of short visits a day. After a few short but terrible weeks a carer found him on the floor unable to get up and an ambulance was called. Social services agreed it was unsafe for him to return alone to home from hospital and it took six weeks of him sitting in a hospital ward, well but bed blocking before a suitable care home was found. Because this was an unplanned emergency move the home is nearly an hour from family. The whole episode was a total shit show

my sibling is the happiest I’ve ever known now. Cared for, relaxed, properly fed and clean.

My son has complex needs, periods of mental ill health and is very impulsive. We are working with social services to build a support team and he will shortly be moving into his own home. We are in our sixties and decided to do this now whilst we are strong enough to fight for appropriate care. I have come to see it as increasing the team around my son to include his mum and dad. Our son deserves to live independently and we need to live peacefully.
We have had social services involved since he was 16 (now 22). Been on the housing list since 2021 - hopefully will have a flat from Oct.
It takes ages to organise so start now
Do not wait for a crisis:
He needs a needs assessment
You need a carers assessment
You need to consider getting power of attorney
You need to push social services for support - our first step was to get agreement for a care agency. I also got him on the council housing list.
One last thing..my son actually wants to move out, he loves us but wants a degree of independence. You need to engage your son with the plan - it isn't something you can 'do to' your son better if you can work together.

Right now you are still capable of dealing with the transition to supported living. That may not be the case indefinitely.

I am not trying to excuse his behavior, but the lack of independence that comes from being stuck living with his parents is going to be frustrating for him. His situation may be necessary, but if he is capable of going out with friends unsupervised then he is capable of chafing at his circumstances. That may be contributing to the strains in your current relationship.

moving him to a different living situation will take you out of the role of rule-maker. You can still help him when needed, but he won’t be beholden to you anymore. Your relationship may improve.

We also come back to the very important part of you being capable of helping him with the transition now. You may not be ready yet, but he is ready, and tomorrow your circumstances could change and your ability to help him could plummet.