Struggling to cope with adult son’s behaviour at home

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Living with DS is becoming an absolute nightmare. DH and I are in our late 60s and DS is in his 30s. He has ASD, OCD and Learning Disabilities. On most days we manage quite well. DH is physically disabled, I am also and have severe depression.

On his worst days, DS is extremely difficult to live with. His OCD gets the better of him and he screams and shouts abuse at us. This has just happened again this evening. DH and DS were trying to cook together and it just ended up with DS yelling.

I am sorry that this is so muddled but I’m shaking with fear and anxiety. I just don’t know where to turn.

I fear your present is my future. Just years of slog.

I don't know what to suggest other than asking SS for help in finding him some sort of care home. Something like that will have.to happen one day.

This sounds really tough. It sounds as if you need a break from caring, either for a short while or more permanently.
If you feel your son needs a review of his health conditions, speak to his GP or any team that are supporting him.
For yourself, contact your local council and speak to Social services about how difficult things are. Ask for an assessment of your son's needs and about respite, also ask for a carers assessment for yourself.

I would contact ss and ask for advice. Is your son open to the idea of moving out and having his own space? Ss may be able to help with that. Sorry you’re going through this OP

That sounds tough.

Do you have any involvement from adult social care/MH or LD Services already for any of you?

What is his understanding/capacity around his behaviour?

Have you had any kind of carers assessment for yourself?

Could he move to supported housing?

What is the plan for him in your old age and after death?

I'm so sorry OP and I know exactly how you feel. I cared for our autistic learning disabled son for 30 years and in the last year it became untenable. His challenging behaviours and obsessive control over everything in the house just got worse and worse, we just walked on eggshells all the time. I used to wake up with dreadful anxiety and was often physically sick with it. I honestly didn't want to get out of bed. My poor DH was often physically attacked.

Things came to a head when our son ran off during a meltdown and was in the road and the police were called. The police took him to hospital, to a mental health unit and from there he was transferred to an assessment and treatment unit for adults with learning disability and autism. The unit was staffed by specialist learning disability nurses and he stayed there for nearly 5 months. During that time, he started medication and his anxiety and challenging behaviours were greatly reduced. A year ago, he moved into supported living, he shares a lovely house with two other young men and they have round the clock carers. He now goes out in the community, shopping, beach, bowling, swimming, bike riding, cinema - his life is infinitely richer and happier. We visit him all the time and it's amazing to see him so calm and happy. I'm also relieved of the dread of worrying about what will happen to him when I'm no longer here.

I think you need to speak to your local adult social services learning disability team and ask for help - they can explore with you the different options. I know it's scary but you can't go on living like this and honestly, things can get better. Please do reach out for some help 💐

Contact social services for an assessment. You should also look into supported living for him. Even if he doesn't want to leave, the likelihood is that there will be a day that you won't be able to care for him, best to get him settled in another home whilst you can.

Thank you all for your kind replies. Today is proving to be difficult again. He has decided not to go out and is behaving badly. We have been in contact with Adult Services and other organisations, but nothing very helpful has come out of this as yet.

I think that we are reaching the end of the line. Since we moved into this house I have really tried to make his room lovely with everything he needs. We go above and beyond to help him. However, when he is in one of these horrible moods he is so nasty to us.

He has just stomped upstairs threatening violence and suicide. I know he doesn’t mean it but how can we continue to live like this?

Does he take any medication? This is obviously different but I know a family member with severe PMS who suffered from rage when they were hormonal. They take an antidepressant now and it has stopped the rage entirely - could mental health medication help him? Is he already on it?

Thank you for your post. He has been trying antidepressants but the first two caused excessive sweating that still hasn’t stopped. He is now on another one which doesn’t seem to be helping. The doctor is going through a number of tests with him, so I’m not sure how that will work out.

Anyone can request a care act assessment.
Would you make him homeless?

Sorry you’re having such a tough time. Have you had a carers needs assessment? Are you in touch with your local carers centre?

I think you have to start to plan for the future. You say you’re in your late 60s and DH is disabled. Do you feel your DS could live independently when you’re gone or too frail to look after him? If so then he needs to move towards that now.

If not then I’d urge you to start the ball rolling with social services. Contact them and say you want an assessment and a plan made for supported living. It’s important this is planned early so you can all take your time and make decisions to what is most appropriate in a non rushed way. Get referrals to therapy services to work on any skills he needs to improve for supported living. If you wait until there’s a crisis and you can’t go on then choices will be taken away as you’ll be dealing with what’s available at the time. It also means your DS can move towards supported accommodation in a gradual way with time for him to get used to it.

This is incredibly hard for you OP. We had some family friends who went through something similar but when their son started to be physically aggressive - started punching walls which then progressed to him slapping them - they knew they could no longer safely meet his needs at home. The care needs assessment happened and he did eventually get a place in supported housing. Interestingly, it has massively helped him and he’s become more independent and confident.

Unless you have other arrangements, this will have to happen at some point anyway. It certainly can’t hurt to get the ball rolling.

Still thanking you all. I am so worried about the future. My sweet boy is now a mostly sweet but sometimes really nasty man. I love him so much and can’t bear the thought of his reaction to us organising him somewhere else to live. I know that we need to do that sometime, but can’t get out of my head the thought of him crying to come home. In many ways he could look after himself but managing his money would be difficult for him as his ASD means he gets fixated on buying stupid things that he either doesn’t know how to use or doesn’t need.

We are in contact with a load of agencies, including social services, which is rather confusing as they are all sending us links to other organisations. We don’t know where to start!

i’m sorry that this is so muddled but my head is spinning.

It would be a good idea to get him settled in supported housing now while you are in a position to help him settle rather than later. He needs to learn to become self sufficient/resilient. Keeping him at home is not doing him any favours in the long term.

You do need to be cruel to be kind. When he finds himself in unsuitable, emergency care because something happens to you two, it will be much more difficult for him than if he is supported into alternative care now.

I know this is so difficult but you will hopefully be given support in how to address this with him. There is the possibility that it might even turn out a lot better than you could dare hope - that a higher degree of independence could help him. That’s of course not a ‘given’ but it is one of the possibilities. He might also be appointed an advocate who could help him with managing his finances.

I hope you’re able to find a way through this. I know your situation is not uncommon especially as parent caregivers get older and less able to cope.

This really doesn’t sound healthy, safe or sustainable for any of you.
If you are in contact with lots of agencies and they are trying to refer you on etc it could be for financial reasons.
Can you ask for a Multidisciplinary Team meeting with some person centred planning around your son’s needs.
Someone should certainly be looking out for you as parents.
If you are crying out for help and still getting nowhere you can either email your MP’s office with details or make a surgery appointment.

My daughters a bit like this but much younger, about to turn 18. I’ve got her on the list for LA housing with the intention of her living between there and here. Sometimes she NEEDS time alone to regulate and I don’t have the space. It also affects my younger daughter a lot. If we had the two houses there’s other options. She’s capable physically and practically, she’ll need support to live independently but I can do that. It’s hard being cooped together.

Surely you need to get him into some kind of suitable establishment while you are still able, get him settled. He can come home for visits.
It may be the making of him.
One day he will be obliged to survive without you.

If you go to the council and explain the situation and that he will be made homeless, they will have to act in finding him some suitable accommodation due to his vulnerabilities.

There is pressure on councils to save money, that is certainly true. But that is not you or your son’s fault. Is he on benefits? If not he needs to apply in order to pay housing benefit when he finds accommodation.
Supported housing usually has 5 hours or less a week of support, supported living can be higher, up to 30 hours. You can access some via housing (I.e. if your son needed to move out but was not able to live independently in emergency or general housing) some would be eligible only through social care.
I would stress that this was not a housing issue but that you could no longer meet your son’s needs and you felt that his lack of independence was contributing to his poor mental health, and that you don’t feel safe.

A former colleague of mine had a daughter who was learning disabled; fortunately, she never became violent, but it was clear that she would never become fully independent.
She made the difficult decision to arrange supported living for her, and it was very hard at first, but she was aware that, sooner or later, such arrangements would have to be made, and bit by bit she established her routine living in supported accommodation, with frequent visits "back home" until she found her feet.
My friend is now feeling the effects of old age creeping up on her (aren't we all?) but realises that the demands of caring for her daughter are becoming too great for her physically, but she is glad that suitable arrangements were made well in advance, and as suitable as possible, rather than whatever is available in a crisis situation.