Living with adult children with MH disabilities how to cope

[dailymailgoaway2]

I am struggling to carry on at the moment and am all out of ideas on how I can make my current situation more manageable. I am aware this post may sound unsympathetic but I am at the end of my tether.

Dd is 20 she has a range of MH difficulties and a mild learning disability , these have all been present throughout childhood and aren't new, but do seem to get more complex with every year. Dd does not and will not engage with any MH support.

Daily life is anxiety inducing and I now feel I'm always on edge and overwhelmed. Some of the daily behaviours I struggle with -

A very entitled attitude that I am here to serve her and if I have other plans and can't do XYZ she has a complete melt down crying and screaming for hours relentlessly calling texting etc so I can't enjoy whatever it was I had planned. She also hammers on the neighbours wall as they have made complaints about noise and knows this makes me anxious.

Very obsessive about certain things mainly STDs and body odour/bad breath and completely breaks down about both - she has never had either but it obsesses she does and stalks google to find evidence that everyone is lying to her and she does. Even when told by GUM clinic she doesn't she thinks they are lying. Despite this fear she does have unsafe sex and is very gullible and will go on 1 date /fall madly in love/ have sex then a week or so later it's over and there is another love.

She can't hold down a job and has had jobs but eventually clashes with others and is sacked. Very limited in what jobs she can do due to her maths/literacy levels. Therefore no money and more blackmail towards me to provide

She thinks she is very streetwise but she isn't frequently puts herself at risk intervening in dangerous situations with no thought of the outcome.

All her relationships have involved DV and she likes the dangerous men and anyone nice she writes off immediately

She doesn't have friends for long , very intense together all the time-then hate each other .

There is always a huge amount of drama in her life which she tries to draw me into.

No desire to learn any independence won't cook /clean/ wash clothing.

She has several requests for me a day and is relentless. I have always been very no is no that doesn't change but she has never learnt and will spend hours and hours chipping away, crying, screaming and using blackmail.

Lockdown has really made this worse as previously I could escape to work and block her calls whilst there.

No limits with alcohol goes out gets intoxicated/can't walk/talk and also does drugs at the weekend. Not sure exactly what as she denies it but I think cocaine, mdma and ketamine by her presentation.

Never takes a key out so my weekends always involve the doorbell at 2-5am then worrying she'll choke on her sick all night.

I know she is desperately unhappy but won't be helped or willing to discuss and I don't know what to do for the best, she won't engage with support. Making her leave would no doubt make her more vulnerable so I am at a bit of a loss over how to improve this situation. Any ideas?!

Oh wow what a difficult situation for you. Sounds like you are going above and beyond to support her but clearly she needs specialised support as her needs sound quite complex.

What would happen if you just didn’t do things like cook for her? If you flat out stopped picking her up at weekends or doing her laundry etc?

Does she have any insight into her behaviour? Does she have times when she can speak about her needs and knows she needs support or does she not see/understand that?

If I didn't do it she just won't do it ! Will not eat/drink then ends up with kidney infections.

She has no insight at all, not even a smidge she is always convinced it's everyone else!

Gosh, that sounds so difficult. I don't really have any advice for you as I haven't been through anything similar, but I wanted to ask was she assessed for anything when she was younger apart from mild learning disabilities? I'm no expert, but there sounds like there is something else there.

I know you said she won't engage with MH services, but could you almost bribe her (I know that sounds awful) but say that unless she agrees to an appointment, you won't give her money for going out (I assume you give her this?)/something else she relies upon you for?

I don't give her money no ! She has several diagnosis and from childhood diagnosed with ASD and ADHD but she won't engage with any support. I worry she also has some kind of personality disorder but she won't even attend her appointments.

Social services adult needs assessment. You may have to fight for it.
You need to get her back on the radar. If she had a statement then she should be still entitled to some education services until 25.

The longer she's left between leaving school and childhood paperwork becoming outdated, and the point you stop being able to care for her, the harder it's going to be for her and you.

From what you're saying she's likely to end up viewed through criminal behaviors lens soon and it will get much harder then as well.

I'm so sorry, because I can see how awful this is, but if she won't co-operate with other options, then this is your only path open that I'm aware of, other than allow her life to descend into chaos.

The fact she has apparently not insight is worrying. I can’t imagine change happening easily if she doesn’t have any insight into herself or how she is.

I agree maybe you should refer her for mental health support and/or social care support without her consent. Surely if she would not eat/look after herself if you don’t then she is a risk to herself? I would even consider calling them and telling them you are considering stopping caring for her (even if that isn’t the case) to force their hand to do something sooner. Sounds like she is a risk in terms of her lack of awareness of risk and inability to care for herself.

The reality is you need to push for support now because who know when you won’t be able to look after her. They’ll come a time when you are I’ll or too old and so probably best to push for any support you can get now while you are able.

I think you probably need to make yourself a pain in the arse to social care and/or mental heath to make sure she gets a through assessment of her needs. Make sure you explain all the risks and if anything significant happens keep calling them and referring to them.

What happens when you are at work.

Have you contacted any MH or disability charities for support. Might be worth xo texting them to get expert advice about what your rights are as a carer and her rights are in terms of disability and mental health support. Best to refer /request support with that knowledge behind you.

Where is her other parent in all this?

Hi all,

Thanks for advice , I have tried to get a needs assessment but she needs to consent to engage (needless to say she wouldn't). They say she has capacity to consent and is an adult. She went to a specialist school and although life could be tricky it was a great school and they fully supported her, they don't have post 16 so she had to move and was then excluded from new college within 3 months and no where else was found. So she has no GCSES or qualifications and is so far behind she is unwilling to even try as everything she's wanted to do have rejected her due to not having GCSEs.

Her dad is beyond useless , and has only seen her a few times in her life, and not at all since she was 7.

Was that a disability assessment. Did they assess her mental capacity or just say no before a proper assessment of her capacity.

This sounds complicated because it’s hard to know if the issues are mh related or disability related (obviously could be both). I’ve found where people have both sometimes it’s hard to get either service to support.

With a learning difficulty she does not have capacity. (Been there, dd is 23).
First things first. Slow changes. Let her know that there is going to be a timetable. It will involve her doing some of the chores around the house. Draw up the timetable together, and start her off with putting her washing in the appropriate place, add a task every few days. Include putting a meal together (start with making a sandwich, add a piece of fruit). If it's not done, it's nothing major she's missed out on.
Add to the timetable, your times for going out, and having some peace. Inform her that your phone will be off and that should she bang on the walls the police will be informed. You will have to repeat all of this at regular intervals.
Get her various diagnoses together to show social services that she isn't capable of making her own decisions.
Are you getting the appropriate benefits for her?

No she used to get DLA but was rejected for PIP ! I work full time so won't get any benefits.

Mental capacity isn't about having a learning disability the bar is very low for capacity and she has capacity which can fluctuate dependent on mood.

When she was under 18 we had the support regardless as I had parental responsibility.

Her EHC plan states both MH and LD so she has needs for all aspects. I would say her MH is the priority, but I'm not a doctor. She is on meds for anxiety which make a tiny difference but not much.

As a primary aged child she had ADHD and mild LD but was sunny natured and lovely to be around. However the gap between her and peers widened with age and they began to notice which caused teasing and bullying she used to just sob and sob at school. As she became older this upset turned to anger and she would rather be sent out of the classroom than be put on the spot or made to feel not good enough, that behaviour got worse and worse till she was excluded from all mainstream schools.

I should add she can be lovely has a real affinity with animals and fights for what she believes too be fair. An example of this (there are millions) is she witnessed a serious assault on an innocent pub goer but instead of calling police etc she stood in front of victim and was then assaulted herself. So there is kindness In there in extreme circumstances it just ends up high risk.

She definitely sounds like she needs support for her mental health. How would she react if you told her she couldn't stay with you anymore if she didn't get help? This is no kind of life for you and your own mental health must/ will be suffering if something isn't done.
@Gilead having a learning disability doesn't automatically mean she doesn't have capacity. She may have it for some things and not others, it needs to be assessed on a case by case basis and can be affected by lots of things.

I'm aware of what capacity is and isn't, having been part of an assessment and support team before I retired. As the person concerned is not making judgements that best serve her interests, it is likely that she would be deemed as not currently having capacity.

OP Does your dd get ESA? She would be entitled to this in her own right. PiP is also worth appealing.

I posted earlier and asked about other diagnoses because I have an 8 yr old (so nowhere near your DD's age) who has ASD and ADHD, and I saw a few parallels with how he is already, so I'm not actually surprised that your DD also has these diagnoses.

Do you think she would do a volunteering role, perhaps somewhere like an animal rescue, so there would little pressure due to performance/salary, she wouldn't necessarily need any GCSEs, and it would give her a sense of purpose which might distract her from some of the less desirable behaviours? It could be a start that might give her some decent experience in an area she enjoys, and further down the line she might be able to move on to a paid role.

Just out of interest, is she, or was she, medicated for the ADHD?

If e.g. she doesn't eat or drink without the food being prepared for her and puts herself in dangerous situations without understanding the danger that feels like evidence of lack of capacity in relation to health related stuff?

She might we have capacity for certain decisions - a job she does or doesn't want, leisure activities, choices between foods, but failure to drink feels quite fundamental?

@Gilead

I'm aware of what capacity is and isn't, having been part of an assessment and support team before I retired. As the person concerned is not making judgements that best serve her interests, it is likely that she would be deemed as not currently having capacity.

OP Does your dd get ESA? She would be entitled to this in her own right. PiP is also worth appealing.

I mean you your comment suggest you don’t understand how capacity is assessed. It’s not about if someone makes decisions in their own best interest or not.

@Nacreous

If e.g. she doesn't eat or drink without the food being prepared for her and puts herself in dangerous situations without understanding the danger that feels like evidence of lack of capacity in relation to health related stuff?

She might we have capacity for certain decisions - a job she does or doesn't want, leisure activities, choices between foods, but failure to drink feels quite fundamental?

I agree with you here if she can’t understand the information or have the level of understand required to weight risks she might lack capacity for some decisions.

Op I would ask for assessment again if I were you but stress the risk factors and push some more. Unfortunately that is what it takes. sounds like your daughter is a lovely person who could engage really well with some work/education that meets her interests. I really hope things improve for you both x

Thanks for the advice all! Where capacity is concerned she has it , she knows the risks of not drinking enough and has dealt with the consequences and pain of kidney infections but regardless will so fridge has to be fully stocked with a certain brand bottles of water very specific of size , her taste buds are quite amazing she tastes the most tiny differences and has simply never enjoyed food or drink.

She won't volunteer sadly she wants money 😬. She was medicated for ADHD for a short period and did notice a real difference on her productivity, less impulsive decisions and behaviour and seemed to focus and retain more. Unfortunately all these medications have pretty severe side effects and she stopped taking them and will not retry, currently on sertraline but nothing for ADHD. The medication for adhd made her feel constantly sick and full up even when she hadn't eaten all day.