Carers of family members with BPD\MH issues - are you out there?

[floramckitchen]

Hi - I have an 18 yo dd who is a recently diagnosed BPD (Borderline Personality Disorder) sufferer. I am coping as best I can and working full time but could do with some support from some fellow carers.

I have had some brilliant advice on the Borderline Personality Disorder thread (thankyou SirBoob and Heffa) but feel we could all support each other in times of crisis.

Hi all - I'm a bit of a lurker here as my DD18 is being assessed soon for BPD, having had a 10 week spell in an adolescent psychiatric unit last year following an attempted overdose. It's just over a year since she was discharged, so I'm very familiar with everything I'm reading here; the self-harm and obsession with tattoos are particularly resonant, as is the feeling of being pulled this way and that, and treading constantly on eggshells for fear of rocking the boat.

Some things that have helped me:

• Mumsnet! Especially some of the wonderful posts by Flow4 and others on the Teenage boards, from whom I have learned three vital skills:

1. Detach!
2. Look after yourself! This will help you and the rest of your family more than you can imagine.
3. This mantra: 'You can't change DD, you can only change your reactions to her'.

• I kept a journal last year when things were especially tough. It was a kind of brain-dump before going to bed, though I admit that I still spent many sleepless nights worrying. Reading back over it a year on is useful, as I can see how changing my behaviour, not hovering over DD the whole time, and re-engaging with my own life instead of panicking about hers has been a major factor in her recovery.

Finally, from my reading up on BPD I've learnt that one important thing is to validate their feelings. So instead of 'Don't be silly, of course h/she didn't mean that', I try to say 'Yes, I can see that must have made you feel as though they were telling you xxx'.

In the early stages of her illness (pre-overdose) my DD would spend virtually the whole day on Tumblr, which was a particular bugbear of mine, and I was frequently impatient and dismissive of it. Eventually I summoned the patience to ask her about the people she was 'talking to', and even to learn something from her about their stories, and I was impressed with the effort she made to give encouraging advice and the positive messages she posted. So it's not always bad, and for her it gave a sense of purpose in (at the time) an otherwise rather purposeless life.

Although I wouldn't say she has made a complete recovery, I'm pleased to say that my DD has had a job since the beginning of the year, and now that her friends have all finished their A levels (she gave up school before AS Levels) she is talking about finding something more challenging to do with her life. I feel cautiously optimistic that she will find her way eventually, though also aware that she will probably always be fragile.

I don't know if this helps in your current dilemma, Fifietta, and it's easy to give advice from afar, but maybe you could try a more detached approach - 'I know you have to finish what you're doing on the computer; could we aim to have your bag packed and ready by the front door in an hour's time?"??

Please feel free to PM me if you'd like to talk more, and hang in there. Although I can honestly say that last year was the worst I've ever lived through, we are still here, and stronger as a family unit than we have ever been. This time last year I couldn't see more than 24 hours into the future, but now I feel cautiously optimistic that there is a rich full life ahead of us all.

Sorry for very long post, but hope this helps even a tiny bit!

x

Oh no Fifi - I hope she has settle down a bit now? Luckily nothing like that here, really don't know how I would cope.

Hi Sijeunessesavait, I had tears in my eyes reading your post - I can't see that far ahead yet but you have given me hope and lots of good advice, especially the detach and look after yourself. I don't feel DH and I are getting on very well at the moment (it will be our 2nd anniversary on Tuedsay!) but he is telling me what you have and perhaps I haven't wanted to hear it until now! I will try and be nicer to him when he gets in from work lol!

The meeting went ok at the Unit on Wednesday. DD wasn't too pleased as they didn't give a discharge date, just another cpa meeting on 11 September when hopefully she will be at college. I think we negotiated extended leave from next Wednesday though - although both of us were a bit confused as to what was agreed - and this is all based on her being ok on the new meds - sertraline - she isn't sleeping well on them and feels tired all the time but I am hoping this is just as they are new.

Good luck tonight and tomorrow Fif on getting on your hols x

thanks Sijeunessesavait and Sky, I've also read lots of Flow's posts which are wise and generous and try to remember the 'detach' thing but it's so hard. I am a single parent of one and it's an intense relationship. To be honest that's as hard for her as it is for me as the poor thing is my sole focus (no sibs to share the load) which I feel sure has contributed to her difficulties.

I took your advice Si - thank you so much - and she did sort of respond in a small way, although she now says she's putting more in in the morning. She's still in her bed phone in hand. She feels she 'helps' people on Tumblr too, but I struggle with her obsession with it (and screens generally, which she is using constantly at home, as it becomes impossible to communicate with her) and the 'unreal' relationships she has there...I'd rather she spent her time with real people. She will be in year 11 in Sept' and is doing no work at school whatsoever. I need to have some internet boundaries in place but feel bullied and manipulated by her now. Also, she doesn't seem to mind others witnessing her behaviour...

I've kept a diary on and off too, but sometimes can't face writing/am too exhausted.

At least she is not still saying she won't go to France...though I'm not counting my chickens!

Sky - I hope you manage to celebrate on Tuesday and find some common ground. DD was also on sertraline for over a year but is now coming off. She was also tired a lot but it wasn't clear if it was the meds or her mood or her very unhealthy diet.

Flo if you're around, I remember you mentioning your DD's septum piercing. Mine, having been asking for a nose piercing has now moved on to the septum. I said I think not and she seemed to accept that. We shall see...!

May try to post whilst away

xx

Sky - we were advised by DD's therapist to ensure that her illness didn't 'split' us. I think that happens very easily when both parents are so wrapped up in their own feelings that it's very hard to find time to be partners to each other as well as parents to the child who is suffering, let alone any siblings. Try to use the remaining time that your DD is an inpatient to reconnect with your DH. Easier said than done, I know, and tbh it has taken months for us to get to that point, but looking back I can see that if we'd shored ourselves up as a couple when we had the opportunity, before she came home, it would have been better for all of us. I hope you can do something on your anniversary which reminds you of your common purpose. Is your DD's unit offering any family therapy? We went to a few sessions which were quite challenging, especially for my DH who doesn't enjoy analysing his emotions, but I found they could be a springboard for conversations together afterwards.

For what it's worth, Sertraline has been very effective for my DD - she's still on 100mg and has no noticeable side-effects now.

I hope the extended leave will give you more cause for optimism, and I'll be checking here to see how things are going.

Sending sympathetic thoughts to all
x

Hi Sij

You've given me some hope too - thank you!

I am constantly dealing with stress and drama and tbh it is wearing me out. In the last couple of weeks DH and I have been trying to get out a bit more. It was his 50th birthday so we had a day at the seaside,dd did not want to join in but we went anyway! When we got back home she demanded 100% attention from me as she had been lonely . Loads of tears and tantrums which did put a damper on the day.

I find myself worrying about her future a lot. She had to give up her job because she was too depressed to cope with it. She had worked in 3 part time jobs since turning 16 and never had a problem getting a job. But I wonder about the future so much and can't see a way through at all.

Did your dd get DBT? If so was it helpful?

Do you know what triggered your dd's bpd?

Fifi - I hated the septum piercing ! It would constantly drip drip drip ! and it was very ugly in my opinion. Dd said it was painful too. Good luck with the trip to France!

Hi Flora

I do feel for you and others here - it is so exhausting worrying about what might be around the next corner. My DD hasn't had any specific treatment for BPD yet; only a lot of CBT both before and while she was an inpatient. The assessment for STEPPS (via CMHS as she is now too old for the adolescent services) is in a couple of weeks, but I can see that she has made a huge amount of progress since they offered the appointment and I'm not sure if she will meet their threshold, which is a shame as I think a group therapy would be useful for her.

A number of factors seem to have been triggers for her illness - mostly bullying leading to low self-esteem despite being very bright and high-achieving. We only found out she was self-harming after she'd been doing it for 2 years - teenagers are so secretive and constantly swaddled in hoodies that she was able to hide it, even though I'd have said we had a close and open relationship. I try hard not to react when I see new cuts (she still self-harms, though less frequently) - it is an unhealthy coping strategy which she is trying to avoid, but impulsivity remains a problem.

DD's adolescent psychiatrist told me that he doesn't like to label anyone under 23 with a personality disorder as their brains are still developing, and once depression is treated (ie CBT + medication) the symptoms which may have appeared to be those of BPD etc may also disappear. I'm hoping that this may be the case for my DD and others here. Also I prefer the (I think American) term Emotion Regulation Disorder to Borderline Personality - that way you can think of it as an extreme version of normal adolescent behaviour.

A couple of months ago you wrote that your DD realises that the only thing that can fix her is herself. This is something for you to hold on to and remind her of - in an encouraging way. And it's a reason why going out for the day with your DH is important because staying around her all the time won't make her better. Nor will worrying about her future - not that you will ever stop worrying about it. I just feel thankful when I hear my DD talking about future events - even if they're only a couple of months ahead, as a year ago she was saying she didn't want to live. I wasn't at all sure that she would reach her 18th birthday, but now she is talking about things she wants to do next year. I really hope that dealing with the past trauma will help your DD to move forward. The fact that she is prepared to confront it and get help is positive.

Have you thought of getting some counselling for yourself? I was sure that I could survive this but have found that a safe space with someone who isn't too closely involved has made a huge difference to how I cope with the stress.

I don't pretend to be an expert or have all the answers, but I have found it so useful to read others' experiences, and I'm glad that my post gave you some hope. Hang on to that - it's all there is!

Fifi, I really hope you got off on holiday OK and will have a restful time.

xx

Thank you so much.

Several people have suggested that I get some counselling and I think it might be a good idea. Somewhere to get it all off my chest without offending anyone.

My dd is generally aware of the fact that she has to help herself but has lost all confidence to do anything much. I am worried that she is getting worse again.

Sometimes getting worse is a sign of getting better, strange as that may seem.

My DD took a second overdose this April - 11 months after the first one, just when I thought we were past the worst, and it felt like the end of the world as we knew it. However, it seemed to crystallise things for her, she bounced back faster than I could have believed possible, and the rate of progress since then has been much faster than in the previous 12 months.

I wonder if there is anything, however small, that your DD can feel confident about? Does she like to cook - if so, she could prepare a meal for you? Better still, could she help someone outside the family in a way which could boost her self-esteem? As Fifi and I have experienced, blogging on Tumblr, much as I hated it, gave a sense of community and purpose. Thinking about other people is definitely better than too much introspection. My DD wouldn't do any voluntary work, but perhaps that's something yours would consider? Feeling needed, and not just by family, can help.

Definitely get yourself some counselling if you can. Much as friends want to help, and are prepared to listen endlessly, they don't usually have the experience necessary to help you, and I ended up feeling as though I was being boring, repetitive and a burden, so avoided seeing them, which quickly became a vicious circle.

Be kind to yourself x

Hi all!
Just survived a weekend of home leave without too much drama. I did get a prescription of diazapam from the dr though, as I get so stressed about her coming home and whether she will go back to hospital ok.
I wish there was more support for parents.
Just a quick post as off to bed but will read back properly tomorrow.

Hi Sij

My dd's boyfriend stopped her from taking an overdose of her AD's on saturday morning. She only managed to take 80mg so it wasn't too much of a problem but he got panicky and my dd started to have breathing problems so he ended up calling an ambulance. They wanted to take her to hospital but she wouldn't go because she says there isn't any help there. In the end the paramedic phoned her therapist and made an appointment for Saturday afternoon. As soon as they left she called the therapist back and cancelled it.

I found out about all this last night when she came home. She's been self harming again and is very very down.

I don't know what to do really - all I can think of is to try and get her to visit her therapist again but she is just giving up hope now. I'm worn out with it - no point in taking her to the gp either.

She does go on Tumblr but is not keen to do anything voluntary or make any effort of any sort. She doesn't even keep her hamster clean ! its all left to me.

Feeling a bit helpless today.

Flora, I'm so very sorry to hear this, and thank goodness your DD's boyfriend was able to prevent her from taking more pills. You must be frantic, and I really do know how it feels.

I've been reading back over your posts and wonder whether anyone has suggested that she could be suffering from PTSD - the realisation that she was raped may have hit her hard, and perhaps she could benefit from some very specific treatment to deal with this. Just a thought, and sorry if I've missed something you've posted about this.

Do you get any feedback from her therapist, or is it all kept confidential from you as she's over 18 (this is something I find quite frustrating, though luckily my DD is very communicative)? If she will talk to you about how she feels, could you explore taking her to a different therapist for a fresh start if she has lost confidence in the one she's been seeing? Does her therapist report back to your GP or to a mental health professional? Either way, I'd have thought there should be some follow-up if an emergency appointment was cancelled like that, though I know resources are so stretched that this may not happen.

Finally, do, do, do look after yourself. Your inner strength is the only thing that will get you through this, and it is being constantly depleted when you're living on a knife-edge. If you can't fit counselling in just now, at least do something for yourself every single day - coffee with a friend, a massage, even a long hot bath with a face pack. Anything that gives your mind a break from thinking exclusively about DD's problems.

Sleep as well as you can, and I really hope your DD will agree to get the help she needs.

x

Hi again
Thanks for your help Sij

My dd really likes her therapist but the therapist will not discuss anything with me. Unfortunately she does not report back to the gp either because she is not NHS, so no follow ups regarding a cancelled appointment would ever happen .

We are still waiting for NHS Psychotherapy -apparently it will take over a year for an appointment which is why I decided to go private. MH services in our area are rubbish. In a way its a shame she didn't become ill when she was younger because I think they do try a bit harder with younger kids. DD did have 8 sessions of CBT on the NHS but they just made her worse really!

I wondered about PTSD - she is on a three month waiting list for rape counselling. If she had been under 18 she would have got it straight away - its so frustrating!

I do try and keep my sense of humour and am trying to hold down a full time job. I sometimes go out with DH and we make the most of it whenever we can. Although sometimes when we come home she shows off a bit which can spoil things. I will look into counselling very soon.

I do appreciate all your advice and kind words . It helps me to know that you have been through it all and are coming out the other side.

Thank you
Flo
PS My dd will agree to any help offered. Its just that we don't really get offered any. I have to bloody fight for her to even go on a waiting list and time is being wasted. She is starting get tired of waiting and fighting and is slowly losing the will to live.

I would take some positive from the fact that your DD agrees to any help offered - try to believe that she wants to get better. Someone said to me that if my DD had really wanted to end her life she would have done it by now, and although I was really shocked and upset by that bald statement, it does make sense. Waiting lists and not knowing what is happening are the worst part of it for you both.
Sending sympathy and
x

Hi all

Flora - hope your DD is a bit more settled now.

Just a quick update for us. DD is on home leave for 11 days then is hoping not to have to go back at all. She isn't due another meeting re discharge until 11 September though so I am not sure what will happen after next week. We are going away for a few days to Liverpool/Blackpool and her boyfriend is coming too. We have two rooms and she will be sharing with him and DD2 (13). I am a bit more relaxed and actually did manage to sleep last night - although cocktails at a friends may have helped . DD1 actually babysat for us and all was well. The sertraline seems to be ok so far and she has iron tablets as well. She is eating healthily so all is looking good - although we have been here before!

Hello all, checking in from France where things are going from bad to worse. Dd and i are supposed to be learning French as she has missed so much at school. Lessons on the morning and free in the aftetnoon. She has refused to attend since the first lesson (where she drew all over herself including writing 'fuck you' on her fingers.) stupidly I didz consider sending her home but know that osn't realistic. Unfortunately she is now being vile, verbally abusive and threatening not to eat until I send her home or to kill herself. No Rational discussion has any effect on her and she says I have her false hope deliberately . It is so difficult to find words to say to her and I'm withdrawing a lot. I need an expert to give me a script through an earpiece!

Her behaviour has become so much more extreme over the last couple of months and I try very hard not to get drawn but am struggling and worried.

Was interested that you mentioned showing off Flo as dd does that too tho not for me.

Another moan, sorry - and badly written on an iPod.

Any suggestions gratefully received!

Fido...this thing won't let me write my name...

Hello all, checking in from France where things are going from bad to worse. Dd and i are supposed to be learning French as she has missed so much at school. Lessons on the morning and free in the aftetnoon. She has refused to attend since the first lesson (where she drew all over herself including writing 'fuck you' on her fingers.) stupidly I didz consider sending her home but know that osn't realistic. Unfortunately she is now being vile, verbally abusive and threatening not to eat until I send her home or to kill herself. No Rational discussion has any effect on her and she says I have her false hope deliberately . It is so difficult to find words to say to her and I'm withdrawing a lot. I need an expert to give me a script through an earpiece!

Her behaviour has become so much more extreme over the last couple of months and I try very hard not to get drawn but am struggling and worried.

Was interested that you mentioned showing off Flo as dd does that too tho not for me.

Another moan, sorry - and badly written on an iPod.

Any suggestions gratefully received!

Fido...this thing won't let me write my name...

Sky - I do hope your daughter's extended leave will go well and that your time away will be good for all of you.

Fifi - I feel so much for you, and don't know what to suggest except to validate your DD's feelings, however much that goes against the grain. It's OK to let her know you are struggling, and that you realise she is struggling too! Perhaps you could ask her if she has any realistic suggestions as to how you can both get through the next few days - make it clear you are not prepared to send her home, and that you intend to ignore any threats, but see if there is something you could do that would be enjoyable for both of you, even if just for a morning, and even if it means abandoning the rest of the French lessons.

It's frustrating that your carefully laid plans are going awry, but in the long term the French course is less important than maintaining the bond between you. Remind her of the fun she had a few weeks ago when you were away and tell her you'd love to see her enjoying herself like that again. How might she achieve that where you are now? Give her the responsibility of making the best of this trip so that you both benefit from it. If she refuses to go to the lessons, can you go on your own and let her do something different, or are you anxious about leaving her alone? I know that feeling! but perhaps if you carry on regardless it would be good for both of you?

Our very bright DD has not taken the same path as her friends - she dropped out of school before AS levels and this week has been a painful one for us as they all got their A level results. Now that I've come to terms with the fact that my DD has stepped off the hamster wheel, I believe that the most important things at this stage in life are well-being and self-esteem. As parents we can help to provide these and eventually our DCs will be strong enough to make choices for their futures.

I'll repeat my mantra here: 'You can't change DD, you can only change your reactions to her' because I still say it to myself several times a day and hope you will find it helpful too.

Bon courage!

Hi all

Things have been a bit up and down here lately. My dd had some news from the police regarding her case and it made her extremely upset and triggered off an afternoon of her re-living her assault and going over and over it in her mind. She was so bad that I had to come home from work just to make sure that she didn't start harming herself again. She seemed calmer when the storm had passed though and even went out clubbing on friday night. On Saturday night we took her to stay with her sister for a few days so I hope that its all going ok.

Sij - I know what you mean about the A level results. I am disappointed that my dd hasn't been able to go to uni when everybody elses kids seem to just sail through it!

Fifi (Fido!) - So sorry that you are struggling so much when you are supposed to be on holiday. I understand what you mean when you say that you are withdrawing from your dd. Sometimes I do that just to protect my sanity. They don't seem to care that mums have feelings too. Just keep your chin up and make the best of it until you get home. I really feel for you!

Sky - Good luck with your trip. Things seem to be going well for you and your dd now. Long may it continue!

My dd isn't due home until late on Wednesday night so at least I have a couple of peaceful days ahead to look forward to!

Hi Flora - just thought I'd let you know that I think of you and everyone else on this thread every day. I hope your week has been peaceful and your daughter is feeling calmer.

Here's to a happy long weekend

Thank you Sij

Its all quiet here at the moment. DD has been away since last Saturday and isn't due home until nextWednesday - I think!

She spent a few days with her sister and then went to stay with her boyfriend. My DH picked her up from her sisters which is a 2 hour drive away and she was saying that she mentally 'was in a good place' and that she knew that when she got home that it would put her 'back in the bad place'.

Maybe she just needs to grow up and leave home ??!! I will wait and see what happens on Wednesday.

ps- She's had her letter about her NHS Psychotherapy! It took 7 months rather than the 12 months that we were told. Way to go NHS!

Hello
I always want to reply individually to things but on my phone you can't see the thread when you're replying and my memory is shocking!
Dd was here 2 nights this weekend, went ok apart from a blazing row I had with her father on Friday about letting her go off on her own into town to meet him there (she is sectioned and suicidal ffs and if we hadn't been going away next weekend and she is desperate to come I am 100% sure she would have gone and bought tablets-she even admitted this!).
Bittersweet this week as my best friend's son got his gcse results- brilliant as expected. Really happy for them both but sad too, as in another life dd would have been getting hers
Dd was also sexually assaulted last year, by someone she met up (secretly) with online who was twice her age - it's about a year since this happened so she's full of extra self loathing atm and also flitting in and out of unsuitable 'relationships' made online and in hospital. It's all so sad.
Have a good bank holiday Monday everyone x

Oh Moxie

It must be a nightmare to know that even her own father doesn't understand quite how ill your dd is! Its just as well she has an understanding mum to look out for her!

Know how you feel about gcse results as I feel the same about my dd and university. Everybody elses kids seem to sail through it don't they? Its easy for us to feel like our kids will be left behind somehow. I think it probably adds to their stress tbh.

Was your dd's sexual assault reported to the police? Although its a big decision to make the police are very helpful and can refer the victim on for rape counselling etc. As she is under 18 she should get it straight away. My dd is 19 so she is on a 3 month waiting list. Or maybe try Rape Crisis? My dd always blamed herself for the fact that she had been raped and was full of self hate because she 'let him get away with it'. She hates herself a little bit less now because she has been true to herself (her words) and reported it - even though it was 2 years ago.
I think its the first step in her coming to terms with it and moving on.

Yes, its all very sad that these terrible things had to happen to our lovely daughters and to know how they are suffering is heart breaking for us but I can't imagine what it must be like for them.

Take care

Hi Flora
Yes it was reported at the time and he was arrested, unfortunately due to dd's unreliable evidence (she initially lied to police and said she'd been grabbed by a stranger) and the fact she'd said she was 18 on the dating site - she told him she was 15 but no evidence of this - cps decided she was too vulnerable and they would be unlikely to get a prosecution. She had also been registered on lots of sites and been talking to lots of men - she would have been torn apart in court.
Tbh I'm relieved it didn't get to court she would never have managed a cross examination. The man had a girlfriend and a child- we have to console ourselves with the fact his life would have been changed for the worse, hopefully.
Her therapist in hospital is addressing it slowly with her but she becomes so distressed when she talks about it.
She is so desperate for any attention that she is just so vulnerable.
Her Dad is mentally ill and physically disabled so although I get cross with him, he can't help a lot of it but he is the cause I think, genetically and emotionally of her problems.
CPA tomorrow at the hospital.

It's good that your dd felt able to report and hope she can move on- he police were very good with us too, and understanding.

Hello All,

God we go through a lot with our daughters don't we? We just have to keep believing that they will make progress towards recovery.

sij thanks so much for your kind and helpful words. I think DD had decided she was going to dig her heels in no matter what. She did go out in the evenings with the other teenagers though, so had some fun. And I did go to classes on my own whilst she stayed in our room and was on the internet for up to 17 hours a day!

We came home from France early, together. I had some very helpful talks with a lovely, wise woman there who reminded me that right now what was important was my relationship with DD. I talked to DD and, amongst other things, said that in future I would consult her more about trips. She paid for us to come home so there were tangible consequences for her. And guess what, the very next day she was meeting and making up with the boyfriend she'd spilt up with a few weeks ago!

Our relationship is at an all time low. She is saying she doesn't want to continue with DBT and I am desperate for her to continue as she is all over the place and falling out with friends/being left out on a daily basis at the moment. She feels that I want to 'control' her (this is particularly about her constant inappropriate use of phone and internet to the exclusion of anything else) and says she can't tell me anything and doesn't want to live me anymore. I cannot make the most innocuous/normal parental request without her opposing me. And at the same time I feel so desperately sorry for her and keep reassuring her that I love her unconditionally. She feels that we are not a family.

I relate so much to your painful feeling about exams, uni etc, Flo and Moxie as DD has GCSEs this year and unless a miracle happens and she realises how key to her options in the future these are, she will fail, as she she won't be encouraged by me or teachers - she takes against any teachers who put any pressure on her.

Feeling rather sorry for myself at the moment, but know we're all going through it. DD stayed at a friend's last night, hence I can post at my leisure!

Fifi