Is anyone a reluctant carer for an adult child?

[massivestress]

Name changed for this as I’m aware I will sound like a complete cow.
i can’t cope mentally anymore. My ds has a mental illness which has taken over their life. No job, moved out for a couple weeks, couldn’t cope. Has taken over the dining room and is in there 24/7 except to come and eat all the snacks or have dinner if I cajole them.
wont engage with social services, attends therapy we pay for at £200 a session (fortnightly, I’m in debt) as the NHS more severe support is shit and has a waiting list anyway. Is almost 30. Has given up all hope. Doesn’t pay anything to us due to some bloody stupid choices they can’t change now. It’s like my life is over. ive suggested going on the council list - no. Over the years we’ve paid for so much therapy and supported things. I can’t see an end in sight, I’m just stuck now with this person getting older and more and more reclusive.

You are not a horrible cow.

Time to get yourself a carers assessment. Carer burnout is a thing.

Do you hold deputyship for the AC?

you dont sound like a cow! This is a horrible situation to be in for all of you. You are quite right to be concerned as the worst thing that can happen for such dependent adults is for no plans to be made until the carer dies. I have a friend in a similar situation who does have some services in place but who has been putting off making plans and is now finding it impossible.i think the only choice is to lay down the law - ie, not engaging with soc services is not an option. I am sorry. Everyone expects children to grow into independence, so it a shock when life doesn't work like that.

Make a referral to social services and get someone to come and assess,
you can’t carry on like this!

I feel for you.

Thank you so much for replying. I was so worried about posting. Someone has it right it is a massive shock, I don’t know how we got here from the cheery toddler - where was the point it could have changed.

I think you could drive yourself made trying to recognise a point where things might have been different and you’re definitely not a cow. It sounds like you’ve given far more support than you would have had to provide for a well DC.

I think like a PP suggested, the best thing you can do is to start to look at what would happen if you were too unwell or too old to provide the care he needs.

And definitely ask for a Carer’s assessment.

Is he currently receiving PIP or Income support?

Finally applied for PIP, there’s a lot of paranoia about sharing information with government type things so that’s taken two years to agree to.

Glad that you’ve managed to gain permission. Did you know that you can apply as their deputy for pup and universal credit?

Thank you @TinyMouseTheatre I will look into that.

Im not sure you can in all circumstances though. Have a look here.

Would any supported housing be available to him?

A friend of mine has a son with severe mental illness and the psychiatrist advised that it's much, much better for the person themselves not to live with their parents but to live as independently as possible. Their son lives in a supported living arrangement with two others with similar diagnoses. He was psychotic but now on strong meds and more or less back to reality although udnerstandably dislikes the meds due to feeling so sedated. However, being in the supported housing really does seem better for his recovery than living with his parents and reverting back to being dependent like a child.

Good luck, it sounds incredibly difficult.

Thank you. He has capacity, which is almost harder because I am not part of any therapy I pay for, I can’t make them do anything, they refuse social services support and they just use al my food and water with no care given to me

Has he ever been sectioned? That was when this was put into place for my friend's son. He was sectioned and medicated against his will at the time.

I would love this. Unfortunately he refuses any social services input, says he will kill himself if I call them, and refuses to entertain any conversation about the future. I know I’m losing my temper too much because the only time we talk is after I’ve tried calling, texting and then finally end up hammering on the door to speak to them. Or he comes in and is just rude because of stress.

Could you meet with social services yourself without him and let them know about the situation? Just an idea.

It’s an appointee you need to be for benefits, being a deputy is considerably more complex. https://www.gov.uk/become-appointee-for-someone-claiming-benefits

That’s a sensible suggestion. And any local mental health charities (if you haven’t already exhausted this route?)

Yeah, I agree with pp. I think you need professional advice.

Yeah my dc.

has physical disabilities and also autism and adhd.

having a second go at living independently from September - we’ll see how it goes.

200 a pop is bloody expensive for therapy. Usual deal is 60 an hour.

private psych?

I hear you and know that’s it’s incredibly disappointing for you and also for them when things end up this why. I’ve looked back and asked myself what I could have done differently too and on a good day I tell myself it’s just as likely to be a genetic predisposition - on a bad day it’s all my fault. I do recognise mostly that the latter is not helpful in dealing with things as they are now. What really helped was space, living separately; however that can happen, it needs to be a priority. Things won’t miraculously be better but the hours and days of peace you get helps you deal with the rest of it. Ask through the GP for a mental health social worker (I’m not sure exactly how to do this as it’s not a route we’ve taken, but they could help with supporting your DC into a different living arrangement). You are not alone.

yes private psych. Still on the waiting list for local next step services and that’s four months for talking therapies (apparently more intense than the usual talking therapies that’s failed 3-4 times).

Thank you. The GP was useless, offered me a mental health assessment with the same worker ds saw months ago. Everything is my fault, my fault they left home, went to uni, because I can’t cope with the illness so wanted him to leave. This is the version being told now. It’s a mix in reality. I can’t cope with the constant illness and depression but I also wanted him to access support much earlier and he wouldn’t.

Good luck to your dc, hope it works out x

Go to your gp get counselling for you
Talk about this

"says he will kill himself if I call them"

Why would he choose to do so?
Why does he want you running around after him
You can call who you want to call for advice

I was in this position for many years. It is absolutely and totally soul destroying so I know how you feel. I wish I had had this thread to help me , God knows I tried everything I could think of and there was nowhere to turn. Doctor was useless, everyone I tried was useless. Therapists let my son down or didn’t help. He was desperate for help and couldn’t find it.

Amazingly , he is now living in a shared flat and has a full time job, but the price we have had to pay is he’s cut the whole family off. I don’t know which situation is worse. Heartbreak either way.

I suggest small steps. Can your son volunteer doing something to give him some sense of agency and self esteem? A charity shop, animal shelter, gardening initiative? That would help him meet people and learn some skills at least. Does he do his own washing? Can he cook? Teach him these skills. Teach him to clean the house and get him cleaning for you so he’s contributing. Ask him to sweep up leaves, go to the shop to get some milk, little things. Set him small targets.

What would support him to engage with social services? Can you be there with him, fill in the forms with him, talk to him about his anxieties? He is most likely overwhelmed with fear and like a cornered animal . Think of strategies to help him deal with this overwhelm.

it’s so important that he doesn’t just fester in his room. Would he join a gym , a walking group, a film club?

Most importantly look after yourself because the consequences to your health and wellbeing are enormous . Find whatever way you can to support your own mental and physical health. What is his father doing? Does he have siblings?

Also consider carers organisations who may be able to offer you help and support. I went on breaks with them which gave me the chance to talk to other parents in a similar situation.

It may sound harsh but sometimes people need a dose of reality. Tell him, no I can't cope with living with you, I'm being affected by your mental health and you need to move out if you want me to keep my own sanity and carry on caring for you.
I'm not minimising mental health. I know it can be a very dark place and I feel for your DS going through this, but maybe the realisation that he is hurting you and a push to independence will help him progress. You shouldn't be living in fear and sacrificing your own life because of his threats to end his life.