Support thread? Adults kids with severe MH

[SouthWestmom]

So I really didn’t expect to deal with this when I naively started my parenting journey. But I’m at the end of my patience with it all. Tried paying for therapy, encouraging NHS, topped up things they ‘had’ to do - extra year at uni, retraining, nothing ever is fun or good it’s always miserable. Every conversation starts with ‘I’m so <insert negative>. It’s been years and they are mid 20s. Living at home, furious at any suggestion they move out (can’t afford it) jealous of sibling. Filthy, room is the biggest in the house and trashed. Eggshells for everyone. Refuses to believe treatment will work so just stuck now. Just thinking maybe some solidarity or knowing I’m not alone would be nice.

I’m a MH nurse. What input have they had from their local MH services/NHS? Are they on any medication? I know it sounds trite but please try and look after yourself as well. This is hard.

Thank you. The trouble with adults is that with capacity there is nothing I can do. So keep missing the waiting list reconfirm stuff for first step NHS, starting again, deciding no one can help. In the meantime using loads of water, energy, snacks, and blaming illness. nHs is useless tbh, first stop is IAPT who just keep them in a wait list for CBT then they need to renew their place as it's been months , they don't, they get kicked off. Rinse and repeat.

Hello Southwestmom,

I also have two young adults with severe MH. By severe I mean with the severity in my eldest son's case to require multiple admissions to hospital, sectioning and residential care from the age of 18 to 21 ( the MH difficulties began when he was a child). Now at 24, he lives in supported accommodation, and is the gentlest and sweetest young man you could meet, but he has terrific problems with anxiety, and with aural hallucinations. He has really good support for this.

My youngest has always been avoidant of treatment, but his anxiety levels escalated as an older child/young teenager and he now lives with me. He has a serious eating disorder which is really hard for me to cope with because I experienced a similar disorder as a teen/young woman.

Added to that, their father (my husband) is in a care home with MH and other difficulties.

I agree with you, services for adults are extremely stretched. My eldest receives the support he needs to function, but he needs extra support to progress. Currently, I am very proud of him, because he is looking for a little more voluntary work, and he is going to enrol on a course run by a local university for people with MH issues. He completed such a course last year and it really increased his self esteem. I hope, in time, he may find paid employment, and take qualifications related to his area of interest, but that will happen when he is ready for those steps.

It has been a battle to find support for my youngest because he has capacity and because he avoids appointments. My main job is trying to create a really low arousal environment and supporting him to at least meet up with the specialist eating disorder team who has very recently become involved.

I know I have rambled a lot here, but MH difficulties are very prevalent in my family and I experienced many years of hospitalisation through this myself. Time, understanding, celebrating (quietly) the small steps the individuals take, safeguarding and, unfortunately, begging for services are probably the things that can get us through.

Recently, I went for a carer's assessment. This was just to see if there was any way I could be supported to support my son. This resulted in another invitation for my son to undergo a needs assessment (which he always declines). Also recently, I e-mailed the MH service who support my youngest, with a desperate expression of my perceptions and fears. This did result in a visit, a phone call and a session my son attended.

I apologise for the extraordinary length of this reply, but I would like to say I have the deepest empathy with you.

@funnylugs thank you, I appreciate you sharing how it is. I’m just so frustrated all the time. I feel trapped by the ocd that I’m expected to do - wipe things etc. I hate it all so much. I just want them to leave and do what other adult children do - I’m so cheated of the future I thought they had. I just feel old and tired and worried and stressed. Stuff like Christmas is a chore because the house is full of crap they ‘can’t’ tidy. I’m sorry you are facing it too but you seem much nicer than me.

@SouthWestmom

Your situation is sadly not uncommon OP.

As you have already stated where an adult has mental capacity they are entitled to make unwise decisions and cannot be forced to engage with services unless they present a risk to themselves or to others (abuse/neglect/harm).

As such there are a significant cohort of young adults living at home that do not reach this threshold, even if you could argue that refusal to engage in MH treatment is a form of self neglect - because they have a right to refuse treatment.

It puts parents in a very difficult position where the day to day stress of living in a home environment dominated by an adult child's members MH struggles is simply untenable but the off-ramps are equally difficult to navigate.

Generally, such situations "resolve" only at crisis point where the persons MH deteriorates to a point they require sectioning or as part of a carer burnout where the parent has to make the heartbreaking decision to make their child homeless.

In the latter case this forces adult social care involvement in an emergency housing capacity if they are deemed vulnerable (which won't be great - maybe a b&b or shelter) and MAY result in the child accepting intervention from MH services once their parental safety net (including free WiFi/food/accommodation) is ripped away.

It's an extreme decision and one not to take lightly but in some cases (and I can't be sure that's true if your situation) a family sometimes needs such a catalyst to force change.

Refusing help for MH is easy when the condition itself removes any motivation to get better. When that's compounded by a parentally supported lifestyle that simultaneously negates any benefit to seek help you end up in a vicious cycle.

My advice would be to speak to adult social services and request a carer assessment as a pp also mentioned.

Talk through your situation and what would happen if you called time on the status quo. As a start you get your risk of burnout on your case files.

Then think through what you can/think you have the resilience to do next which as a start point might be calling MH social care and telling them you are going to tell your child they have 1 month to start engaging with services or you will remove them from the home and you want to flag this as you are not sure how this will be received. Make sure you have the MH duty number and tell them if and when you have this conversation.

But you need to follow through. Don't say it and not do it. So be clear you feel able to do this.

Good luck however you choose to proceed 

Hi I feel like I’m at the start of this journey, I have a 19 yo DD, severe anxiety and OCD. She didn’t finish school and had a terrible time with CAHMs, this was at the end of covid when MH services were pretty non existent so she just disengaged completely and I didn’t blame her. Took me 18 months before I convinced her to see a GP again and she now has a care plan in place. She has a CPN who is visiting her weekly, OT input and after Xmas psychology.

It has put such a strain on our family life (I have 3 other DCs) and my own MH has plummeted just from the anxiety of worrying about her. She is fully an adult now but in a lot of ways she isn’t as she’s missed out on a lot of vital interactions and experiences she should have been having from age 16 onwards. On the very rare occasion she leaves the house it’s only with myself and it’s like having a 8 year to look after. Financially, she won’t apply for any kind of help so we receive nothing to look after her either. We aren’t in a position where we struggle financially thankfully and she has everything she could want.

Just to add the fact they are "furious" about suggestions they move out suggests they do actually value living at home despite how they treat it (and you by extension). That gives you some leverage.

If you don't want to go for broke at this stage then an alternative is to make home somewhat less comfortable whilst they refuse to engage with MH services.

So if they won't tidy communal areas of their "stuff" it goes in black bin bags and into the garage/shed for a week to give them a last chance to sort it then it gets binned.

WiFi password is changed and restricted to a few hours a day.

Nice food/treats are locked away. Basic food provisions only.

Be prepared for being the "worst parent" but your hard line is you are done supporting an adult who refuses to help themselves and this is a last ditch attempt to get them to engage before making them homeless.

Whatever you decide re: privileges to remove to you must hold fast. Keep a few in reserve so that any poor reaction combined with a refusal to seek help means another sanction.

bread i think you have captured it really well. It's very tough not being able to intervene in a 'parent' way and just take them to appointments etc. The trouble with ocd is any touching of belongings triggers immense anxiety and anger. I'm not allowed to express any momentary anger or frustration or I get told how angry they are with me for being mean and shouting (I would say that there is a lot of exaggeration in their interpretation).

@headache I'm so sorry you are also here. Maybe it would be nice to just have a loose thread to chat. OCD is awful, incredibly hard to live with for everyone.

@SouthWestmom yes living with someone who has OCD is awful, her bedroom is a pigsty (unlike the image of clean freak OCD sufferers) because if she starts to clean it, she cannot clean it properly so she will clean and rearrange one shelf 4 times to get it correct and it could take 2 hours and not be correct. So rather than not try to have her room correct she just doesn’t bother. Of course, if I try to help and do s quick tidy she will get super stressed and anxious I’ve touched anything. Heartbreaking to watch really.

Oh I can relate to this. Mess and filth for everyone else to tidy and clean. And being watched so you don't accidentally contaminate something. It's so awful, I feel trapped in parenthood and selfishly I wanted to be free by now.

@SouthWestmom its so difficult isn’t it? Today I was tidying, I was emptying all the bins upstairs from the bedrooms and bathrooms. Naturally I wanted to empty DDs as it’s overflowing and all over her room there’s tissues with blood on them that she just throws down doesn’t put in the bin. So I’m picking them up and binning them. She’s going mad with me for touching her things. I said I’m doing this in everyone’s room not just yours. I’m also putting on a white wash so looking for dirty clothes so pick up some dirty clothes despite the basket being right outside her door.

It’s not just the usual teenager mess it’s filth and I have said I will clean it up when it’s in my house. I’ve offered time and time again to help her tidy. I know I sound really unsympathetic but it’s hard having an almost 20 yo with severe MH problems in your house all day everyday. She wakes me up every single night as she doesn’t sleep at night so doesn’t go to bed until 5-6am then sleeps all day. I worry about her non stop.

That is so familiar. I've tried everything- doing the room together, buying easy storage, going in alone etc etc and it always reverts to used pads, tissues, wrappers etc everywhere. All the cups and mugs.
I don't know the answer. Have you tried any support groups?

No I haven’t wouldn’t know where to begin, I have too much else going on with my own health and life.

I don't really know where to look. They'd be furious if I had a carers assessment. I think in their head I'm really abusive. Because I moan at them about their room and being tidy/clean and don't like ocd being performed around me.
I've said I'm going to do a weekly clean for my own sanity. Bins, rubbish and surfaces.

DDs Occupational Therapist is going to be going into her bedroom with her and helping her to clean things. Daily I’ve been going in and sorting out 4 things (4 is her “number”) so I’ve said right I will clean up 4 things and so far it’s going well so I’ll lift say 4 pieces of rubbish and she’s ok with that. It’s a start.

How did it go @headache ? I found that helping tidy/doing it for them/ being calm/ being furious - nothing helps.
I honestly feel so lost and frustrated at watching this complete descent away from a bright future to an invisible demon.

This is going to sound incredibly brutal and it’s much harder to do than to say but sometimes you need to stop being the safety net. There is no desire to get help because there is no hardship or consequence. Sometime you have to make life tough and be cruel to be kind because otherwise the pattern of behaviour never changes. MH is not an excuse for bad behaviour. You have the right to a tidy home and you have the right to financial assistance.
You need to be careful you are not enabling this behaviour. Sometimes life needs to be uncomfortable. Anxiety needs to be faced up to otherwise avoidance sets in and the anxiety grows.

@SouthWestmom OT is coming out tomorrow it has spurred DD on to tidy her room up a bit. She was saying she wished she could just put things in a cupboard do a mad 10 minute clean and tidy rather than have to have everything exact and do her counting. It’s a tough watch.

I often think of DH and I weren’t comfortable or if we had split up she would have to have filled out her ADP forms. She’s lost over 3K this year she would have been entitled to. She 100% cannot work, she cannot support herself. If we didn’t pay for her food she would starve (not that she eats much she’s very underweight)

biscuit I don't disagree it's just very hard when equated to love by the other person - eg a withdrawal or attempt at tough love is seen as cruel.
I just feel after all these years of therapy/meds I'm exhausted and fed up and can't see a way of having a normal life where I'm not a carer in some form. Which I know is reality for a lot of people but I just feel frustrated at the MH stuff because I guess I feel more could be done with some effort.
@headache I hope it goes ok. I've given up now and written the bedroom off - no one can face going in there it's so disgusting and I'm sure will be mouldy and trashed. I can see from before the furniture has been stained.

So another screaming match because the room is vile and filled with dirty rubbish and crockery and literally no space to move. Ended with how much they hate me and I'm a liar about everything. I hate living like this.

@SouthWestmom will they accept help to clean? With my DD it’s her OCD all of nothing on that if she cleans something it has to be meticulously cleaned 4 times or she just doesn’t bother. Most of the time she just doesn’t bother. So what I do is go into her room and lift 4 things a day. She can cope with that. She told me tonight she’s ran out of pajamas as they are all dirty as she cannot put them into the washing basket correctly. So we came up with a plan, I gave her a washing basket just for her to fold her dirty washing into (yes it’s got to be folded immaculately) then tomorrow I’ll wash and dry it separately and she can take it out the dryer herself and refold it. It’s actually heartbreaking as she said tonight she fears she will never get better and will just have a life of poverty ahead. Some days she has to wear 4 socks.

DD has autism, DH and I have badges for being the worse parents ever, however DH just strugs it off and I take it to heart. I try and support her etc etc, endlessly worry about her and get it all thrown back on my face. Sigh..

This is so familiar, we have the same dynamic. I just can't bear to let filth mount up, and I'm so tired of trying to be helpful or go at their pace, nothing changes - @headache I feel like I've sat and cleaned 'the right way' so many times and nothing changes. I don't want to live like I have another mental illness tbh, I have enough of my own problems.

SouthWestmom just being doing some baking, I am so hurt that took it out on the cake mixture

DDs bedroom is a pit but I just shut the door and ignore it