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.

I've had some success reducing expectations and conflict. You don't need to make him dinner or call him to eat if he's 30, or organise and pay for psych appts (and I would guess, spend time trying to persuade him to go). I found that after I stopped trying to get mine to change, it has gradually given them the space to feel worthy of change themselves. I focus now on trying to build self esteem and on practicalities (what can I buy or do that might allow them more independence - so to give an example if food prep is a flashpoint they could have a fridge and microwave in their space). Sometimes I feel things are getting better for them. I know for sure they are better for me. And I'm pretty sure they are no worse

I've had some success reducing expectations and conflict. You don't need to make him dinner or call him to eat if he's 30

This.

If he is genuinely suicidal you can contact his therapist and say that he is saying that and if they believe this is accurate they have a duty of care to involve other people, it should be in the therapy contract. If they don’t believe he is suicidal then maybe you can breathe a bit and if they contact the gp or emergency care at a and e it’s a professional response to someone saying they are suicidal which is what your son needs. I wouldn’t be paying £200 a session for talking unless your son is being prescribed something as well privately.

In different circumstances I have contacted ss and a gp about a struggling family member and even though they wouldn’t have done it themselves and they are extremely ungrateful to me for everything I have done for them their life is so much better for me doing that as they get care and support now. I think it works better if a person who isn’t the main carer does this as I feel ss lean on the feelings you have for the person and the guilt - I don’t have any so I could be more businesslike.

Does your son have OCD?

TW; suicide and CSA mentioned.

I have tried to kill myself in the past and this was in a way that was sudden and instant but my house was broken in to when a health professional became suspicious, I told no one of my intent. I didn’t threaten to do this. I have little time for people with MH issues that do this as it is pure manipulation which is what your DS is doing.

My DH forced me in to a MH programme, I really didn’t want to do it but he had reached his limit. I had lost my well paid job and was an absolute mess. I was on this programme for a couple of years and it was for three full days a week. It was for people with enduring and difficult to treat MH issues. It worked about as well as is possible for someone very unwell. it was on the NHS but was pre covid, finishing in 2018 so no idea if these services still exist.

Your son is abusing you. That’s the take I get from your post. I have met all manner of completely messed up people due to my journey through MH services. Remember that there is the persons illness and their personality. My sister and I both have bipolar and multiple diagnosis. We had horrific childhoods and were sexually abused by multiple men. She remains the sweetest human you could ever meet, I unfortunately know myself and admit to being completely vile and dangerous when unwell.

You need to report to social services, MH services and if he is abusive and threatens then The Police. Your DH has the right attitude as hard as that is to swallow.

@Jimmyneutronsforehead The support was there because you had a child, if you hadn't then it wouldn’t have been such a good package.

It's such a difficult situ that you resent your child for the situ you're in. I say this from a position of shared frustration because my DD is the same (24yo).

Don't ask permission anymore, just do. It's your house and your life. Paying £200 a session without results suggests your SC is resisting change. Ie they may never change. It's a waste of money so stop it. I was the same boat too a few years ago.

Put the, SC on the list for housing. Your SC needs assisted living support. They may be offered accomodation in a shared house. Yes a shock to the system may help.

Mental ill health, I'm told, is due to a choice or series of choices the person has made based on, typically, difficult situation(s) they've had. IE It is self inflicted. If the person doesn't want to change this, other than hypnotherapy, which may work, nothing anyone does will change this for them.

My DD has changed her religion and through this is now improving. It's 2 steps forward, one back, but it feels like she's making an effort at last.

I would stop the private therapy and I think you need to allow him to hit rock bottom so that he gets better support. If he is saying he will kill himself then that is grounds for him to be sectioned. If he were admitted to a ward he would get ongoing support afterwards. You would also get support and a much needed breather!

The reality is as a parent you are too emotionally involved and probably trying to protect him from the worst, whereas the mental health staff on a ward or in the community know how to be strict with patients in a helpful way.

Stop paying for £200 a session therapy you cannot afford, you may have to find supported living for him.

My adult son has OCD. Your description here is really similar to what I experienced. I would get so frustrated as he would occupy the bathroom for hours and hours to complete compulsive rituals. Showers would take 90 minutes plus and at it's worst teeth brushing would take him 3.5 hours. If he was interrupted he would get so defensive and angry and start the ritual again. It was a huge flash point as others needed to use the bathroom or we would all be waiting for him as we had plans and needed to leave the house and he just wouldn't (I now realise couldn't) stop.

It sounds ridiculous now but I didn't recognise it as OCD for a long time as it gradually crept up until the rituals took over and made normal life impossible for him. He couldn't leave the house until the rituals were complete. Outside of the house he has since told me that he was consumed with anxiety and stress about germs.

For years I tried to get him to seek help but he was so resistant and defensive. The urge to complete the OCD hygiene rituals was so strong and completely had the upper hand. Attempts to rationalise it with him didn't work at all. I started to see it as a gremlin that was controlling my son's mind, ruining his life. It is an awful condition.

I came on here & searched OCD and read that sertraline could help. In January he finally saw a GP who prescribed it. He has gradually increased the dose to 150 mg and it has really helped. It hasn't gone away entirely, my understanding is that it is never completely cured, but he says he can withstand the urges better now. He is having therapy alongside. It took years and years to get to this point but I wanted to share this to give you some hope that there is treatment that helps.

Also, I yelled too and would get so frustrated at the constant hot water use. It just seemed so selfish that he would occupy the bathroom for huge portions of the day when people were waiting to shower and get on with their day. It wasn't until I read up about OCD and approached conversations about it with sympathy and understanding that we started to make any progress. He said he felt relieved that I understood that he couldn't help it. He hadn't realised either that it was OCD and an illness.

Sorry if this has already been mentioned, and I know finance is not the most important thing here or your most pressing worry, but I’m wondering about the "financial commitments" he can’t get out of because of previous "poor choices".

I'd suggest consulting your local Citizens Advice re debt management. His living costs, i.e. payments to you for his rent, food, the cost of his use of water etc. need to come first; his other debts have to be paid from what is left. I used to work for Citizens Advice and was frequently amazed how often debts were just written off by the creditor or reduced to tiny weekly payments.

Your life sounds very difficult. I hope things improve soon.

I'm so very sorry for your situation, it must be incredibly difficult. Speaking as someone unqualified but with some life experience, I agree with PPs who say threatening suicide is manipulative. It empowers your son to get his own way, and severely impacts how you feel you can respond.
Would it be helpful at all for you to list all the logical inconsistencies in his statements?
You're abusive and cruel but he still wants to live with you
You don't care about him yet you're paying for therapy
You want him gone but you allowed him to move back in
He wants to be allowed to 'indulge' his OCD but doesn't want to live independently where he can do what he wants, when he wants
Etc etc
Then alongside all the 'he won'ts' you will have a clear vision of how much you really have/are doing for him and hopefully that will reassure you a bit.
MH and logic aren't the greatest bedfellows but I don't understand how he can realistically expect you to endlessly tolerate his lack of any attempt to help himself while also expecting you to accept awful behaviour and provide all his housing, food, WiFi, and toiletries etc.
I know there's no easy answers but I wonder how much is genuine MH issues and how much is entitlement.

This is such a difficult situation for you all, though I think it is something that an increasing number of parents are facing which really impacts on everyone’s quality of life.. I’d agree that the current therapy isn’t helpful as your adult child is not motivated yet.
I would be thinking about looking for support/therapy for you and your husband. I can imagine you are both very motivated and want change but have directed your efforts in trying to get your adult child to do thing differently or for the NHS for other organisations to step up. But even they will struggle if they won’t engage.

I’ll reccommend support for yourselves to work out what you can be doing differently. Not because the situation is your fault as parents. You are motivated but may not know what to do for the best. It’s normal to change our behaviours when someone is unwell but this can be maladaptive and end up inadvertently accommodating the behaviours and becoming part of the difficulties. Please don’t take this as blaming you. We are all doing our best.

To be the parent you want to be is very powerful and you and your husband can become this without it depending on your son’s response. However this can also have a domino effect and your adult child be able to do something differently. If this makes sense I would look up NVR and Adult Entitlement syndrome.

I worked with a nice guy whose sister suffered severe mental health. She was in her twenties when the parents felt they could no longer cope. In the end they had her sectioned and refused to have her at home. She was moved into a secure home and the family visit her often. My colleague said it wasn’t too bad visiting as she was on meds and they could reply on the staff to take her back to her room. Whereas they had zero control over her actions in the family home.

This sounds awful for all involved. Have you paid for a private psychiatrist to assess him? A couple of people in my family spent a long time having therapy that didn't work and it was only after seeing a psychiatrist privately that they were able to be put on the right medication and directed to the type of therapist that can help. You can get some rubbish therapists who don't have the level of training to help severe MH. Prior to seeing a psychiatrist one of my family members had a therapist who thought they had mild depression but the psychiatrist diagnosed severe ptsd.

I suggest not assuming suicide threats are manipulative. There are enough 'if onlys' when there is a suicide without having to come to terms with wishing you'd taken it seriously and not dismissed it.

I would suggest handling it as if they are serious threats. Notify the GP, mental health crisis line, whoever is appropriate in your area. Let them handle it. In my experience, that means that if they are manipulating, they learn not to do that as it will have consequences. If they are serious, at least you have tried to get them help. Either way, you can be assured you have done your best no matter what happens next.

Hi OP I am the carer for DH with dementia. That is not quite the same situation as you are in, but I do know about the tiredness that comes from caring and how effectively it becomes pretty much the entirety of your life. Whatever you do you need to take a break and you need to get time to yourself. I have retired early to look after DH, but I get carers allowance and he gets attendance allowance, so this gives us some (but limited) ability to bring in a carer once a week. I would make sure you get this break. You also need to be really honest on what is feasible and what you want for your own life. I would expect this is likely to be DS living independently from you with you visiting and providing some support? If so you need an LA care assessment. IME Social Services are way too busy and have to be pushed quite hard to respond to queries. Make sure you understand the assessment process and the response times. There is a national body called Carers Voice (carers voice.org). I would speak to them if possible before you start the process. Ultimately it can work, but it will take pushing and time.

I have little time for people with MH issues that do this as it is pure manipulation which is what your DS is doing.

Expressing suicidal feelings isn't manipulation. What a horrible thing to say. Some of us actually bother to express what we feel in order to try to seek help, and being dismissed as manipulative is soul crushing.

Frankly I have little time for people like yourself who don't bother to seek help or try to help themselves, despite having the support of a partner - you had to be "forced" into treatment? Whilst people who actually seek help get dismissed as "manipulative" by services because of the sort of judgement you show.

That said, the DS doesn't seem to be helping himself at all. If he thinks his parents are abusive he should have left home, using benefits to pay his way. Stuff like excessive water use directly results from his MH, but expecing OP to provide financially, provide meals etc is selfish entitlement. As is the behaviour of others mentioned on this thread (funnily enough, always males...) of smashing things up, damaging house etc. That's not mental illness, that's abusive.

Hi OP, I just thought I would mention about your son's referral as I had a similar outcome recently when referred, (wait for intensive CBT)

Mine is for PTSD and anxiety disorder. I think it is because I'm not psychotic (was in the past and had a care co-ordinator etc) Nowadays they are also cutting back on support such as care co-ordinators etc I have heard.

I wonder if it could help to chase up the CBT for OCD he has been offered. Also could ask at the GPs in case there is any more support locally such as with the local Mind or if there is a CPN attached to the surgery who might help?

It sounds really hard, I understand a bit but from the 'other side' I also have some other health problems I'm sure are hard for my family in some ways.

I do try by best to lease with supporting stuff such as PIP etc though. Does he get LCWRA with universal credit? Could be worth applying for that too.

Oh, on meals, something I do is get these "frive' meals (online) delivered which go in the microwave. I get them with my PIP.

That support was offered despite me having a child.

I was set up with a social worker through my occupational therapist who offered me supported living. When I mentioned I also have a child who lives at home with me, my social worker didn't know that I had a child until that point because that information had not been passed on from my occupational therapist however he made great efforts to make sure that if I accepted any support for independent or supported living that my child would also be accomodated and would also receive any necessary assessments as he is also a disabled child.

He wasn't part of the original discussion so I'm very certain the package I was offered was because of my own support needs given his existence was a shock to my social worker when I mentioned him.