Daughter aged 22 with undiagnosed BPD

Hi, we have a daughter aged 22 who has undiagnosed BPD living with us whose behaviour is getting worse. It’s a long story… and complicated by the fact she has failed back surgery and MH problems for many years. We are exhausted and it has affected our other children, one won’t come home to visit and the other, who is younger, tries to keep the peace but ends up in tears, asking us not to do anything to aggravate the situation. I am the villain and my daughter has told me not to talk to her anymore and she doesn’t want me as her mother as she hates me. However, she expects, demands and bullies us into doing what she wants.

She has seen various psychiatrists and none have given her a diagnosis. BPD was suggested by an outreach team and having read the NHS guidelines about BPD it is as though it is the final piece in the jigsaw. We have approached the GP asking for help. Our daughter wants to leave home as she hates living here but has low income which seems to make it impossible for her to move out. Also, our daughter refuses to get help and if she doesn’t like a professional refuses to see them again. She has changed doctor’s quite a few times when they have said something she didn’t like. She is up and down like a yoyo and recently took an overdose. It’s like having an adult two-year-old with tantrums. Her anxiety and rages ruin everything. She is disrespectful and won’t do anything for herself. She keeps saying don’t we understand she is so unhappy and depressed and wants to kill herself.

I don’t feel the Mental Health Professionals in the community, in our area, have been helpful nor offered the right support as they discharge our daughter with letters that say, she has a negative outlook on life and all the time she thinks like this, nothing will change. Then she has a crisis, goes to A&E and they advise her to get help, but she doesn’t so we go round in circles. We are not sure what to do now.

https://www.carersuk.org/forum/specific-disabilities-conditions/mental-health/bpd-lack-of-support-37892#unread

The above thread may give you some ideas.

I think I would go along with your daughters desire to live independently. It would be interesting to see if she actually means this to happen or it’s to gain more attention.

I would say once she has the knowledge of what accommodation is available to her. She will quickly change her mind to leaving. However, that does not help with her behaviour at home. Its up to you as a family to sit and discuss. Can you really put up with the current situation. Your daughter is an adult and now must be treated as so. Your are right is like dealing with a toddler. Remember back when she was young. What sanctions or discipline did you use. It’s like going back to basics.

Have you actually made any inquiries to what housing accommodation. Your daughter might be able to access.

Does you daughter work and attend college.

Hi, Sunnydisposition thanks for your suggestions,

We are looking at accommodation but she can’t afford the rents in our area. I am going to get some advice and see if she can get any benefits to help. However, it looks like we would have to make her homeless. She works only 12 hours a week tops, often it is sporadic as it is hospital shift work on bank. With her back condition, she is in chronic pain and she can’t work more hours. She spends the rest of the time in bed and doesn’t do anything around the house. When I insist she do her washing etc I am verbally abused and told I am causing all her anxieties.

As our daughter won’t talk to me we are unable to sit and speak in an adult manner. As soon as we try she flies off the handle and storms out the room, with the statement no one understands her and we don’t care about her. It’s the “I want help, I don’t want help, leave me alone.” She does that with the professionals as well. Her moods are so up and down it is difficult to find a time when she is calm to broach any subject.

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We are looking at accommodation but she can’t afford the rents in our area. I am going to get some advice and see if she can get any benefits to help.

HOUSING BENEFIT ?

Housing Benefit: Eligibility - GOV.UK

POTENTIAL AMOUNT ?

Check how much Housing Benefit you can get - Citizens Advice

The real fun is taking whatever HB award figure and then comparing that with local b.t.l. rents.

Then , the REAL question to ask is … " Can I afford to bridge the gap … Rent minus HB ??? "

In most areas , can be a minimum of £ 50 … in others , £ 500+

Whole thread designed to assist benefit claimants with housing issues :

https://www.carersuk.org/forum/support-and-advice/carer-disability-benefits/carers-claiming-benefits-just-how-secure-is-that-roof-over-your-head-housing-allowance-council-tax-problems-34469?hilit=roof

London ?

Don’t ask … even a dog kennel is beyond most on HB !

Thank you for that Chris, will look into it. I will be going to talk to a friend who is a solicitor next week and is an expert on rents etc. I don’t know how much my daughter gets in benefits or in wages as she won’t tell me. I suspect my husband will have to ask her for the figures as she won’t tell me.

Your welcome.

HB and the BTL market ?

Like chalk and cheese.

Despite assurances to the contrary , benefit claimants will find it difficult to rent in many areas.

Plenty on that one in the main HOUSING thread.

Universal Credit ?

Just look at the infected manors so far … and their current lettings market !

Throw zero hour contracts into the mix and you have the perfect recipe for … disaster !

Chris, I seriously doubt our daughter can afford to leave home. Rents in this area are ridiculously high, maybe a room in a house share, but even then still way over budget. And then there will all the other expenses like food and we won’t be able to sub her. She barely gets any universal credit as she can’t work many hours. All this will make her anxieties even worse and as her perception of everything is that being away from home all will be rosy…

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Chris, I seriously doubt our daughter can afford to leave home. Rents in this area are ridiculously high, maybe a room in a house share, but even then still way over budget.

Multiply said daughter by several million … including whole families.

Therein lies the escalating housing crisis issue as so outlined in those two threads mentioned earlier.

Rents are continuing to rise … the Housing Allowance ( From which HB is calculated ) remains frozen.

As every commuter on the London tube knows … when the doors open … that recorded message … MIND THE GAP !

Only now , said gap is now a chasm !!!

Chris, yes indeed I am aware of the problem, it is awful and criminal when whole families are in crisis. But our daughter doesn’t care about others, it is us she wants to get away from and has no idea of the terrible problem that the nation faces with the housing issues. I have a son who struggles to pay rent in London and has to choose between food and bills and that is three friends sharing a small flat that actually is only big enough for one person.

Perhaps before setting up a permanent place. There needs to be some way of your daughter being away for a time.

If there was somewhere our daughter could go to I’m sure she would have done so. She mentioned going and staying with her brother but he won’t have her as she doesn’t get on with his partner. Other family members aren’t able to have her either. Friends of hers live with their parents and are happy to see her for a couple of hours as they find her negativity difficult and also told her not to take medication so are not supportive. They think she should just snap out of it.

Thank you for these websites, I shall take.

A few of my carees live in supported housing, there’s a few charitys in Yorkshire who buy or are given houses through wills etc.
They then split up the house into rooms e.g 5 bedroom house 5 rooms for people to live in, then a communal lounge kitchen etc.
A support worker is provided for so many hours a week, 9-5 week days and a pop in support worker over weekends.

The council pay the charity, I don’t know how much the amount is, but its some sort of supporting people scheme, when young people with issues cannot manage or live on their own.

So that’s worth a try? if it exists in your area.

Thank you. Is it for people with learning disabilities, or can people with physical impairments use the scheme as well?

I have seen quite a few schemes going on, the one above was for young people with mental health issues, who were unable to live at home or didn’t want to live at home.

Equally there are some care agencys that own property, not just big care homes, houses and again the same scheme, mentally or physically handicapped live there with a carer/support worker and a night carer.
Your daughter would need to meet the criteria for this supporting people scheme, mainly for people needing extra support, if this scheme exists in your area.

Equally churchs again are given property through wills and rent it out for reasonable rent giving a family a chance to have a good home.

I just learned about these making friends through a day centre for disabled people, most needed accommodation like this.

So try talking to the council or the CAB or mental health services, they might be able to help you.

Thank you, will ask around to see if there is anything like this in our area.

Hi
I have had a good read through your post and I don’t think the mental health services have been at all helpful.
The crisis team should be arranging the most appropriate help to avoid the same situation happening again instead of just advising her to get help.
Has there been a firm diagnosis of BPD? in that case my Mental Health Service suggests Dialectical Behaviour therapy prolonged exposure as the most suitable treatment for BPD.

My mental health service has a community crisis intervention service, to avoid crisis and admittance to hospital, it works with the service user and family.
It provides support to prevent crisis and avoid distressing situations for the service user and family.
It also mentions finding suitable accommodation close to the hospital and the family when the service user is unable to live at home.

Hope this is helpful, too many times people with complex mental health issues are just turned away from services that they desperately need.
Your daughter is clearly in what is called emotional turmoil, having strong mood problems that she probably can’t control, only sympathetic expert help and support will resolve this.
Message me if you want to talk more.

It sounds as though the Mental Health Services in your area are not offering the level of support they should be. It is unreasonable, that after all this time, your daughter is still not officially diagnosed with any condition - her behaviour certainly sounds like classic BPD! Obviously, without a diagnosis, it is difficult to offer treatment, as treatments vary for every mental illness. It sounds as though you, as a family, together with the like of A&E staff, are simply trying to put out every small fire as it occurs, but without the correct tools! I simply can’t believe that the mental health team have not fully assessed your daughter sufficiently to give her a diagnosis!

We hear all of the time that mental health services and provision is somewhat of a postcode lottery in the UK, and this has been the case for far too long now. I think it is time to start complaining to be honest. There are PALS services in most hospitals, alternatively you could put a complaint in directly to the NHS Foundation Trust for the service concerned. Within your complaint, you need to demand that your daughter be seen, properly assessed, diagnosed and given a treatment plan as soon as possible. If necessary, get your MP involved too.

Things simply can not go on as they are, as you and the rest of your family will continue to suffer in the end (both physically and mentally). With this in mind, you should also register yourself as a carer with your GP and be sure to make an appointment to see if there is any support available to you (this could be support groups for carers, like yourself, dealing with an adult with mental health problems - it’s often surprising how these things can help you, and it will also demand that you have some time set aside where you are away from your daughter, with some space to think and be.)

We are currently struggling with my cousin (36) who has BPD. She had been ill for some time, but it seemed the mental health services where she was living were useless. Around 6 years ago, she moved back to her parents, and fortunately the mental health team here were brilliant - she had a confirmed diagnosis within weeks of becoming involved with them. Her psychiatrist prescribed medication and the difference was unbelievable and fast! There were a few bumps in the road, but on the whole things improved massively and were looking good.

She was actually very stable for a couple of years, in which time she became involved with her current husband, and had a baby. About a year ago things began to fall apart again! The little one is now 2, and we all feel as though we have gone back to square one with it all. In my cousin’s case, she drinks to ‘numb the mental pain and distress’, but alcohol brings out the real nastiness and aggression. A couple of weeks ago, on a visit back to her parents, she ended up being physically aggressive to her older sister (strangled and bit her) and the police were called.

Unfortunately, I believe that, had she re-engaged with mental health services in her current home city (my understanding is that mental health provision is, again, excellent there!), things would not have progressed to where we are now. However, she was afraid of doing so in case they called Social Services with there being a baby involved. This has now happened anyway due to the police intervention the other week!

Her husband works and they can’t afford for him to lose his job, but she can’t be trusted not to drink when he is at work - hence she is often in no fit state to be looking after a toddler on her own. We’ve been trying to manage this by her coming home to her parents’ during the week, but now her mother’s mental health is too fragile since the incident with her sister, and does not feel strong enough to even see her - let alone have her stay there. As a result, my Mum and I have had her stay with us a couple of times, and at other times, either her father or I have stayed at her house. (My cousin and her husband live almost 2 hours drive away from us).

I am very aware that things can not go on as they are, and my cousin has (so far) agreed to see her GP to discuss medication to stop her drinking (it actually stops the patient feeling any effects from any alcohol they consume!). However, I am already at the point where I have decided that, should she change her mind about either going to the GP to discuss the possibilities or trying this medications if it is suitable for her, I will walk away. She has to start to take some responsibility for herself and her actions.

This is the same for your daughter - she is an adult and must begin to start to take some responsibility for herself. If she continues to refuse to engage with any services (GP / psychiatrist etc), she is not showing that she has any desire to get better. You and your husband have to start asking some difficult questions of what you are and are not prepared to put up with, and then stick to it. While your daughter may well be acting like a child, she is not, and she can not be allowed to manipulate things the ways it seems she has. At some point in the future, you may well have to throw her out of your home and turn your back on her for the sake of your own sanity and for the well-being of the rest of your family. Also, sometimes those who are refusing to help themselves, (even when they have lots of support from a loving family - as yours sounds like) need to hit rock bottom before they realise that they have to face up to things and take some responsibility. It might sound harsh, but it might be what she needs in the end.

Whatever you decide, remember not to let things continue to such a point that you (or anyone else in your family) suffer. Believe me, I have seen the physical and mental health of my Aunt and Uncle deteriorate rapidly over these last 6-7 years, and am desperately worried that the stress of it all will kill them!

Take care, and remember you are not alone. There are many of us who understand and are fighting a similar battle.