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.

Is he not under a community mental health team with a care coordinator? If not then why not? Had he refused?

This is completely incorrect. PIP and ESA have not been merged and do not use the same form nor criteria during assessments.

Please see if there is a carers organisation local to you and contact them. They can give you information help and advice as well as support for yourselves.

So a referral to them and an assessment , then they were like we are referring you to talking therapies (like a higher version). That’s it, still on a waiting list for this. Also a GP mental health assessment to get to that.

I'm so sorry, just to say another here in the same situation. 'Where has the cheery toddler gone?' - what I've thought again and again too.

Here DS is nearly 24. Complete burnout at university in final year and has been back here for last year. There have been so many false dawns, - I had hoped summer and the chance to have walks together might make a difference, but he has withdrawn more and more. He has ADHD, which has been unmedicated, and I think probably also autism. It has taken a year to get him an urgent psychiatric appointment, and in the last month he is finally on new meds, but beyond the meds I can't get him to do anything - have a routine, emerge from bedroom except for a meal, even right now, wash himself.

I worry for him, but the impact on me (single mum) and my life is massive and I'm really tired now.

Aw @redmapleleaves1 I’m sorry, genuinely. I get sarcasm if I say anything like ‘oh poor you, making it all about yourself’ when I’ve said how awful it is to live with. I really struggle not being involved , I can’t see how a fortnightly hour is going to make a difference if I don’t know what’s discussed or what homework there is.
maybe we can keep the thread going and just check in for some moral support ?

In such a case, any action is better than no action

You've said, "He", so no need for clumsy 'theys' and 'thems'.

I do know two families with adult daughters, both of whom lost their confidence, one at seventeen, still at school, the other during the second year of university. Parents were loving and nurturing, various types of help tried to no avail. The girls stayed at home, the eldest now pushing fifty living with widowed mum and the youngest in her forties, with mum and dad.

Both girl took over housekeeping, some cooking, decorating and gardening at home which was extremely helpful while parents were working. What's more they did, and do, it very well. The eldest of them had a very sick father and she and her mother cared for him at home for quite a while before he died which was much appreciated. She and mum have now moved to a different house and daughter runs the show.

If you met either of them you would not think there was anything strange about them, certainly not now. They are useful and happy - both found their niche and left the pressures of the outside world behind, while still being in the world.

Regarding money, they obviously don't pay rent and board but they earn their keep and parents give them an allowance.

Maybe your son will find his feet in a similar way, especially if he has no pressure. I do hope so.

@massivestress you mentioned mental illness

You mentioned the OCD is one of them

Is schizophrenia also one of them? You mentioned he didn't apply for benefits because he wouldn't give the government the information.

I realise you may not want to list them

But I'm trying to get a handle on whether or not he's actually capable of living outside of the house and working. You say your DH is very frustrated. That often comes into when either the ill person is not believed or the ill person actually isn't ill

You mention also about the debt

Is the private therapy doing any good? If it isn't then I think you should stop spending that money.

do you have any idea what medication he's taking or is it completely kept private from you?

what does he want or does he refuse to talk about it? Have you asked him what he expects to happen when you're no longer here? I'm sorry that must be a terrible worry for you.

Refuses to talk about it, I think too much time has passed to think of a future (being unemployed etc, not dating etc). Currently we are at a cordial moment where dh and I (after I read responses) have spoken yesterday about stopping all pressure - no mentioning anything except ‘do you want a coffee’ etc when we see him. He’s emerged for food today and been out for about 40 mins.
several diagnoses in a bit worried to list them in case they google and find this thread. Severe Depression? As well. I don’t have access to any other info.

@massivestress well if he's nearly 30? I don't know if too much time has passed.

There's a lot of what we would say to you that would depend on how unwell he is. Is he considered fit for working? Or would the state look after him when you're not here?

Sorry if that's too difficult to discuss
We had someone in our family who got a job at 40, it was actually his first job

The prompt was that his father died and then he realised that his mother would die

Then he found a girlfriend, I was amazed but there you are

I wouldn't say he's doing brilliantly, but he's doing much better than anyone thought he would

That was severe depression, but it did show up quite alarmingly sometimes with him being very angry - sorry to say he did make his parents life a misery for a long time

Yea you’re absolutely right and so sorry I gave the wrong information

currently no, can’t do anything for themself incl brushing teeth or showering, can’t write on paper etc. previous periods have included working but always got sacked.

Always being sacked won’t help with their self esteem either. I’m not sure what the solution is, but I hope you manage to find something. The approach of taking the pressure off at the moment seems like a good one though

Everyone i see around me ( family, friends, colleagues) are trying to deal with MH issues in their adult kids. Perhaps not to the extrtent that you are but there needs to be more support out there. One friend has two out of three kids with MH issues ( one mild ), another friend has one with autism and one with severe adhd, my db has two girls both with severe problems ( self harming, anxiety etc). The problem just seems to be so widespread. Not sure what can be done but you certainly aren't alone in dealing with it. Hope things improve for you soon.

I wonder what will happen when the mum dies and the daughters need to sign on for Universal credit and apply for jobs ? It's going to be a bit of a shock to the system isn't it? Unless the parents have left enough money to keep them until they are pension age?

There are Facebook groups for people in your situation. Check out Failure to Launch for example.

Definitely get a carer's assessment. I got £200 for self care activities from mine AND 72 hours of PA time ie someone to watch my daughter when my husband and I go out.

Join your carer's network. Mine runs a group for parents of adults with mental health issues and it also offers cut price treatments like massage, subsidised days out etc.

Look into NVR (non violent resistance) courses. I believe it is the technique most useful in cases like yours.

If your son is ever violent to you or harming himself, consider calling the police. This is by far the route that will potentially lead to him being removed from your home and accommodated elsewhere - happened with my nephew, who now has his own flat via mental health adult social care.

There are lots of us around. My daughter is 28 and here 24/7 though very different situation to yours (she has a learning disability and epilepsy). Our dig is a big help xx

It does matter what the diagnosis is as to what your expectations should be
schizophrenia he should be under an MH team and may not be able to live independently
OCD treatable to some extent but not always in severe cases. To this severity he should be referred to 2nd care. Family accommodation maintains and makes OCD worse and treatment involves challenging the fears and compulsions so being a bit less accommodating will actually be in his own interests.
‘depression’ covers a multitude of sins but depression ought to be treatable and would not be regarded as a reason to get eg MH sheltered accommodation. Treatment of depression involves some ‘behavioural activation’ ie part of it is increasing activity and responsibility so again you pushing back will be helpful not harmful.

I think you should write to the GP giving as much info as possible about his level of functioning and the impact on his family too and ask for the to reconsider 2nd care. If that doesn’t work write a complaint to the mental heath trust PALS. Maybe he minimised his symptoms at the assessment and that’s why he just got referred for therapy. That on its own is rather unlikely to help. I hope he is on meds as that will also be part of the picture for any of those diagnoses

I also think you should probably stop funding the fortnightly therapy if there is no benefit. I would not fund therapy for someone who is treating me like crap and making no effort.

I agree. Mental health services and social care will be expected to pick up the pieces when mum dies or goes into care. Not a great long term solution to just promote further dependency or if that’s your strategy at least have a plan for when you die not involving the state.

https://ysph.yale.edu/familyaccommodationocd/about/

Reducing what you do and having some boundaries might actually be helpful. I agree with a non violent resistant approach to these situations. You don’t get angry and shout but you assert your boundaries and you stop doing things that are not in the persons long term interests.

https://www.partnershipprojectsuk.com/nvr-adult-child-dependency/

Thank you for the links and suggestions about carers network and NVR.
the referral is to community mental health but after the assessment they did the referral on was to talking therapies (some kind of intensive one) again. No reference to a psychiatrist or other professional. I think this is secondary care where we are.

I doubt that it is. The higher level therapy will probably be with NHS Talking Therapies which is still primary care. Secondary care you’d expect seeing a psychiatrist, a psychologist and having a care co-ordinator. If there is no contact barring a wait list then they were not taken on by the secondary care team. This is the decision that you need to be querying/ complaining about (well they do really but if they won’t then you might have to)

Have you seen the assessment outcome letter? (if not then ask to see it so that you can help getting more help as you accept you cannot do more yourself)
Look at the reasons for the plan suggested
Google the relevant local CMHT and look at their service leaflet which should give some idea of referral criteria/ what can be offered.
If he seems to fit those criteria then write to the GP and the MH team cc PALS asking why he was not referred to the team or if he is under the team then ask what the care plan is and why he hasn’t seen a psychiatrist or a care co-ordinator
and/ or ask for a reassessment as he’s deteriorated since the last one?
If they don’t offer a suitable service then write to the local ICB who commission services and complain.
All this will be more powerful with his consent but you can do it without.

Do they also have another diagnosis? EUPD / BPD??

In the past I have found local carer support groups (for mental health carers) valuable- not only for the support for yourself but also for signposting you and your loved one to other options / services available.