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

212 replies

floramckitchen · 14/06/2013 20:43

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.

OP posts:
Moxiegirl · 30/08/2013 13:27

Fifi Thanks sorry you are feeling low.
We have to just keep hoping I suppose. We are off to center parcs. Luckily the dr has allowed us a supply of lorazepam for when she is very agitated, I did say I might be taking them myself by Monday!

fifietta · 30/08/2013 14:54

Perhaps you should take some as a precautionary measure Moxie Wink and pass some on to me...

fifietta · 30/08/2013 19:56

Really hope Center Parcs goes well and you have a peaceful time x

Sijeunessesavait · 30/08/2013 22:04

Fifi - I'm glad there were some positives to report from your time in France, especially the wise woman you could connect with. Although it may feel as though your relationship is at an all-time low, remember that your DD only lashes out at you because it's safe to do so - she knows you love her unconditionally. That is totally normal for teenagers, and that's why our situation is so complicated - if they weren't going through life with this extra burden of a mental health issue, we would be just as infuriated but able to express ourselves without fear of reprisals. That's something I'm learning to do now, for my own sake but also to hand back some responsibility to my DD. It's more of the 'detach' advice, really, and I am seeing changes in her as I change the way I behave around her.

So as much as I hated DD being on her laptop all day and most of the night, it didn't make any difference to her whether I ranted about it or ignored it - she carried on. I think it helped that I showed interest in what she was doing on the laptop (mostly Tumblr, about which I'd only heard scary things), perhaps because it brought it out into the real world so the people she was communicating with were more real when I showed interest in them? Tumblr didn't do her any harm, despite my paranoia fears, and this week she told me that she'd read back over some of her posts from this time last year and was amazed to see how she had changed since then.

How did it feel for you to get on and do the French lessons without your DD? Is there something you could do at home which might help you to feel that same sense of being your own person? I really believe that helping yourself is all you can do to help your DD right now. Try not to worry about her education, or even the DBT course. One thing that has amazed me in this process is discovering how many young people do their exams at different ages and stages. It's not a race, and there are plenty of options for education later on. Health and happiness for you both must be the priority for now, so that everything else can fall into place.

Hope you will have a peaceful weekend xx

PS I've said it before, but DO think about getting some counselling for yourself. The stronger you are, the better your DD will get. It's not realistic to expect yourself to deal with all this stuff without a bit of impartial yet experienced guidance!

fifietta · 01/09/2013 12:17

Sij - Thanks again. You talk a lot of sense and I do know that a lot of her anger is directed at me because I'm there. What I find hard on a day to day minute to minute basis is thinking what to do or say as each new issue arises. Do you mean that you are now expressing yourself anyway?

Today, for instance, aside from the homework issue, we are supposed to be meeting friends with much younger children to see a dance show. This was booked several weeks ago and DD was consulted and happily agreed to go (we've seen other shows by this dance company and they're fab). However she is now moaning that she 'hates' kids, hates people generally. All complicated by other events of the morning: neighbour thinking DD had let herself into their house (she didn't) and boyfriend staying over last night with her creeping into his bed sometime in the early hours. Right now she is still in bed on her iphone having grudgingly agreed to go to the show, tho not go out to lunch beforehand. Oh I'm sorry I am rambling so much. It will be touch and go whether she goes or not. Mental health burden aside, she has become SO powerful.

I'm already on ADs but have made an appointment to see the GP next week and will ask about counselling. I do attend the parents' group within the DBT programme but this is more to support the skills the young people are learning and if DD stops attending I'll have to too.

Back to work on Tuesday. At least then we won't be stuck at home together! xx

Moxiegirl · 01/09/2013 18:50

At the end of my tether, am never ever taking her on holiday again !
It's not fair on the others, the whole fucking world has to revolve around her I can't cope anymore

floramckitchen · 01/09/2013 18:54

Hi all

Its so hard living with someone who has such a controlling illness because it ends up controlling everyone in the house. Its because its so scary and the confrontations can be so nasty that in the end you are constantly living in fear of the next drama.

I am looking into counselling for myself and DH's doctor has advised him to spend less time at home and more time at the Gym! I've been getting lots of palpitations recently too which is starting to worry me. Probably stress but I will get it checked out.

DD isn't too good either as her closest friends are going back to uni soon and its highlighting the fact that she is stuck at home doing nothing and going nowhere (her words) with nobody to turn to. Her therapist has suggested voluntary work to give her some purpose but dd can't see how this would help and thinks that the therapist is giving up on her.

The GP has increased the dosage of her AD so maybe that will help ??

She is still cutting her arms and it looks very bad now. I know the cuts will scar her for life so I need to just accept it. Trouble is every time I see them I feel physically sick. It hurts me so much.

Feeling a bit sorry for myself tbh and I can feel that I'm distancing myself from the constant moaning. I am switching off to it really. I just seem to keep repeating the phrase ' I can understand how upsetting that must be' like a parrot and not really connecting to the problems.

Fifi - I'm feeling your pain. You can't reason with them can you? I think that just because our dd's are mentally ill it doesn't mean they can walk all over us and spoil every nice thing we try and do for ourselves. Maybe its best to just carry on without them? although that probably just means the drama is stored up for when you get home. So, either way you day is spoilt.

Sorry I am being negative today. Its all getting me down a bit.

Hopefully I will be back to my more positive self in a day or two.

OP posts:
SKYTVADDICT · 01/09/2013 22:20

I lost this thread off my "threads I am on". Am sorry to read all is not well with you all - we seem to be on the up for now - long may it last. The following is DDs fb status from earlier tonight - a bit "open" for me but thats how they live isn't it?

"Aware I've already made a status about this but.. I need to get this out, my Facebook and all.. If you had asked me 2 months ago whether I would be starting college tomorrow I would have laughed in your face and told you.. I won't make it til September. But.. Here I am.. I'm really doing it. I'm in such a better place than I was then.. I never never never thought that I would have come out the other side of all that crap, but I have, I'm nearly through it.. I have some awesome nurses on the unit, my incredible family and my amazing boyfriend to thank for that. This was just one (5 year long) chapter of my life, now I'm turning the page and starting a new, healthier, more positive chapter. ? feeling blessed."

Sounds good doesn't it? I am hoping so much that she likes college and it all doesn't come crashing down - I think that is because I am still not in a good place and feeling depressed about the shit summer we have just had! I must try harder to be - feeling happy!!

Moxiegirl · 01/09/2013 23:30

Sounds like we are feeling it.
Our last night away ended up me calling 999 (she tried to kill herself) and being transported by police to hospital, we are all here til 2.30 when secure transport will take her back to her psych unit and the police will take me back to centre parcs.
I'm knackered! She is calm now and doing a crossword!
the 2 policeman are very hot

Moxiegirl · 01/09/2013 23:30

I hope so sky x

Moxiegirl · 01/09/2013 23:33

Flora I am so desensitised to dd that it scares me. When someone tells you constantly they want to die, it just becomes normal and has little impact. I still say the things I need to say but my emotions are almost numb. Just tired tbh.

Sijeunessesavait · 01/09/2013 23:48

Reading today's posts from everyone has taken me straight back to where I was this time last year. There is a common theme of everything being out of balance - DD dominating everyone's life, changing the way the rest of the family behaves, and I also recognise the desperate feeling of wanting to make it all better, but having no idea how to do that.

Just remember that you are all being the best mothers you are able to be, doing the best you can do. We are only human!

Fifi - yes, I have learnt that my feelings are MY responsibility, not my DD's, and it is fine to express them to her when I need to let off steam. It hasn't made things between us any worse! Bottling up your feelings will be worse for you in the long run, and that will have a knock-on effect for your DD too. It has taken me a whole year to get to this point, so I urge you to be confident about being yourself at all times. It's good that you can go to a parents' group, but I imagine that this is all about how to support your DD when in fact it is YOU who needs the support, so I really hope your GP can sort you out with some counselling to help you through this very tough time.

Flora - the thing that struck me from your post is the hurt you are feeling about your DD's self-harm. I felt exactly the same way, but now recognise that it was not intended to be hurtful to me, and when I reacted that way it made my DD feel even worse about herself. It's almost impossible not to react, and it would not be unreasonable to ask her to keep them covered so you don't have to see the scars (I assume you have supplied her with TCP, plasters etc? if not, this is really important and puts the responsibility right back with her). I think it becomes a really bad habit, a bit like nail-biting, and my DD still occasionally cuts her arm, but is annoyed with herself when she does, and we talk about what has triggered it. Would that be possible for you? And if there are regular triggers, maybe work together to find ways to avoid them or other strategies to cope with them? It's so hard to have to be understanding of what they are going through when they appear to be oblivious to our suffering! And as I've said before, although it feels wrong to carry on with your life instead of putting them at the centre of everything, that might be the only way to protect yourself from collapsing under the strain of it all.

Moxie - Sad - hope you can do something nice for yourself and the rest of the family to get over the challenging time you had when you were away.

Sky - your anxiety that things might all come crashing down despite your DD's positive Facebook status rings many bells with me. Just hold on to her words and her gratitude for her incredible family - that's YOU! Allow yourself to believe that this is the beginning of a new phase - there will be more ups and downs, but hopefully your DD will continue to feel as positive as she sounds.

Long post, sorry - thinking of you all xx

fifietta · 02/09/2013 10:20

I was going to post again last night after reading all of this. Maybe there's something about the end of summer that triggers anxiety, especially with the changes that brings (school, uni etc) for most young people and the awareness that some of our DDs are not a part of that because of their MH.

SKY, such a positive status from your DD and I really hope that that will be sustained. I completely relate to your concern about how 'open' it is. I am perpetually boggled by the extremely personal stuff my DD puts out to the whole world. I've talked to her about it for years, to no effect. Unfortunately they view the internet as a small world! Don't be hard on yourself, it is exhausting riding the ups and downs and I'm not surprised you are feeling depressed. I know you have four children and work full-time, but could you seek some counselling support?

Moxie, Poor, poor you. I know that when my DD attempted suicide (sort of - more a cry to be heard) I also felt calm/numb...perhaps because I don't really believe she wants to die. I just feel desperate that living her life is so troubling for her.

Flo, I feel your pain, hope that doesn't sound flippant (oops. just realised that's exactly what you said to me!!), and am so sorry you are feeling so down. You have always been very positive and that has been inspirational(!) for me. Sij talks a lot of sense - the idea of trying to concentrate on yourself, hard as that is. We can't block out the constant presence of our DDs in our homes and thoughts, though perhaps we can practise getting away and forgetting for a while! My DD also has great raised scars on her arms now (they look like welts) and they will never go. It is sad. I'm thinking of you.

Sij, thanks again, I am determined to not react so much to DDs provocations. So much of her behaviour is toddlerish and I need keep telling myself that. Part of her control is picking me up on things I say when I do express my feelings: 'it's all about YOU' etc. I'm trying to take some inspiration from 'non-violent resistence', a programme I've read a bit about and which friends are using with their adopted son.

Lots of love to all of you xx

floramckitchen · 03/09/2013 21:32

Thank you all for your supportive words! I really appreciate the understanding and the useful advice.

There has been an odd turn of events. DD has told me she wants to go back to college with a view to going to university this time next year! Its clear that its given her a boost and she is busy applying to start at the end of this month.

Talk about a rollercoaster of emotion!!!! It was lovely to see her so enthusiastic about something after all this time. Fingers crossed that it all works out.

OP posts:
fifietta · 04/09/2013 07:24

That sounds brilliant...so glad something more positive is happening for you!
x

Moxiegirl · 04/09/2013 08:08

Great news Flora! Smile

Sijeunessesavait · 04/09/2013 21:40

Fantastic news, Flora - I'm so pleased for you and your DD that she has seen a way forward. The path from here may not be completely smooth, but remember that it's the path that she has chosen. You will be there for her if needed, but the hard thing now, if my experience is anything to go by, is to stop trying to do it all for her. It goes against the grain for us as mothers, and especially when our DDs have extra issues to consider, but the greatest gift you can give her now is your belief in her. The more you are sure that she can and will do it, the better chance she has of achieving her dream. I hope that the fresh start that September represents can bring some positive change for you and the rest of your family too, and that the ups and downs of the rollercoaster will gradually start to be less dramatic. Keep us posted!
xx

SKYTVADDICT · 04/09/2013 21:49

That's great news flora. Something to look forward to and plan for.

All been good so far this week but we are in the middle of a mini crisis right now in that dd has realised she has to get changed in front of others for the kitchen. We have talked until we are blue in the face about how everyone will be in a rush and no one will be looking at her but its no good! Have txtd the tutor (dh's neice) to see if anything can be done. Sigh. Dd sees it as a huge problem and the voices won't let her do it.

tonightsthekindofnight · 05/09/2013 00:14

Hi there. I have just read through all the posts and the thread really struck a chord with me, I feel compelled to respond but please tell me to piss off if you think I am intruding!!

I was diagnosed with BPD 10 years ago aged 20, after a really turbulent time. My parents, although wonderful in many ways, were not able to deal with it. My mum could never bring herself to say the words self harm/suicide/mental illness/bpd etc etc never mind offer any emotional support. When I was sectioned in hospital she would lie to my siblings/grandparents/bosses about my whereabouts, I felt like she was so ashamed of me. It saddens me that because of this we have lost any closeness and although on a superficial level our relationship is fine I find it difficult to understand how I feel towards her now. I would love to see it from her perspective which is why I think this thread has really hit me. Your daughters are wonderfully lucky to have such amazing strong mums.

BPD is clearly awful and destructive for the families of sufferers, maybe adding to the distress is the fact that it is a huge unknown to most people, no one can empathize with what you are going through when its so unfamiliar. I suppose this is what drives me to try and share my experience. If people are a little more familiar, it becomes less isolating.

At 18 I had 4 grade A A levels and a place to study medicine, an international sports career, grade 8 in piano and had just had a summer in Spain with 12 friends and I was 5'10 and a size 10. An outsider might think I had everything going for me. Secretly inside I hated myself and wanted to die and it hit me then that I had always felt like that. Cue total self destruction.

Since then I have spent months and months in hospital, made serious attempts on my life, taken drugs, starved myself, spent nights in police cells, overdosed, experienced psychosis, engaged in every dangerous behavior imaginable, fucked up my career and my life has taken a vary different path the one my parents had mapped out for me. I am ashamed of how I have behaved and I am sorry to the friends and family I have hurt and yet reading your posts I have such empathy for your daughters. It is impossible to verbalize what that list of 7 god awful diagnostic criteria actually feels like to live with. The mood changes and the overwhelming emotions are so cruel, the pain unbearable. At times feel like it has robbed me of my life, it has brought endless despair and taken my identity and yet here I am at 30 getting better.....

I wouldn't have believed it but the chaos does subside, the illness gets easier to cope with. It has taken a long time for me to believe this but I am glad I am alive and proud to now be a mum myself. I still have very regular contact with mh professionals (sometimes daily) and am still in therapy yet I now have a degree, a full time job, hobbies, a loving husband, a lovely home and two fabulous, amazing, beautiful children. I dont think my bpd will ever go away but I am getting better at living with it. There is always hope.

I know this has been a very self indulgent post but I feel this illness has dominated me for so long I would love to be able to help other sufferers in some way. I wish my mum had helped me deal with it at 18 before it swallowed me up. If I can help answer any questions it would mean a great deal to me.

igotaway · 05/09/2013 09:48

Hi Everyone, may I join in?

I have a son aged 23, and @ tonights, he is at where you were and more

We have seen numerous physcs, he takes dufloxetine and quepitine (sorry spelling!!) but his brain is in chaos. He is a perfectly intelligent boy. One doctor called him a high functioning depressive. He has a job and is very good at it. He hides behind a mask of composure - inside his head, he lives in, for want of a better word, madness, he tells me he is insane and none of the doctors can see it.
His personal self harming kit is a Stanley knife or burning with a blow torch - he is in the building trade so these items are at hand.

Like all the other posters I have done everything I possibly can, but this illness is a bugger and now I am stuck. I simply don't know what to do. Except wait................

So, from the other side, what did you want your mother to do for you? what didn't she do that you thought might have helped.

What am I NOT doing for him? When I ask this question directly to him, he says 'never underestimate your presence or support'
But its not enough is it?

What was going through your head when you were at your lowest?
How did you get back up again?
Sorry for the ramble, but I am at my wits end, I hope you get where I'm coming from

Sijeunessesavait · 06/09/2013 18:35

Tonight - your post is really lovely, and not at all self-indulgent. Thank you for giving me such hope for my daughter. I'm sure the others here will appreciate it just as much as I do. It is so hard to understand the self-hatred which our daughters feel, and as you say of yourself at that stage, an outsider would think that they have everything going for them, which can make us, as parents, feel quite hurt and angry towards them for being what might seem ungrateful. Once we accept that this is not them, it is the illness showing through, it is easier to deal with.

You should be especially proud of yourself for overcoming so much to achieve the life you live today.

Igotaway - it sounds as though you are really going through a tough time, and you shouldn't beat yourself up for not doing enough. You are being the best mother you can be to your son. I hope you have some way to take care of yourself too - is there a support group available to you through your son's psychiatric team? Keep posting here - it's hugely comforting to know that others are going through similar challenges, even if we don't have any answers.

Hope the weekend will be a calm and restful one for all.
x

floramckitchen · 06/09/2013 21:07

Hi everybody

Its been an up and down couple of days but dd seems to gave her goal in mind now which is giving her some focus. She had a little drama last night about all the old issues but seems to have bounced back today.

Thanks for all your good wishes!

Tonight - I am glad you have joined our thread - your story is truly an inspiration. Maybe you can advise me...... I have never been sure what my dd uses to self harm with but a couple of nights ago she asked me to look for a lip gloss that she had mislaid and I found a Stanley knife in one of her bags. She doesn't know I found it. What do I do? ignore or say something?

Igot - I'm sorry you're going through such a bad time with your son. It makes you feel so desperate doesn't it? I thought it was lovely that he said ' never underestimate your presence and support' because that's all you can really do and its seems as if he appreciates it.

Sky - did you manage to solve the getting changed in the kitchen issue?

Stay strong everyone!

OP posts:
fifietta · 06/09/2013 21:09

I'm stressed. Having an awful time with DD who is like a stranger. In the past 2 or 3 weeks she has become abusive, foul mouthed. At 7.30pm this evening she said she was leaving to meet a friend, not at their house but in some road or other...I said she needs to back by 9.30pm (I shouldn't have let her go at all, but did - she would probably have gone anyway). She asked me for money and when I said that the mum who is a 'fing bh' isn't the one who gives money she responded by saying she hates me and is not coming home. She seems to want to have a mum who is a monster and is casting me in that role, much of it stemming from me switching off the internet/asking her to relinquish her phone at 11pm. The rest of the time I do nearly everything for her and speak sweetly to her.

Her phone is now off. I don't know where she is. I am filled with anxiety and dread all the time, hate coming home and honestly feel that my heart is going to give out.

tonightsthekindofnight · 06/09/2013 21:13

igotaway I am so sorry to read what a distressing time you and your son are going through, I can only imagine what pain you are enduring at the moment. I have attempted to write this reply to you a few times but I am finding it really hard.

Firstly, although people with bpd often have similar outward behaviors, everyone experiences it differently so my responces to your questions may have little relevance to how your son feels. I feel very wary of giving advise as such, as other sufferers I have met in hospital have needed different help to me.

"what did you want your mother to do for you? what didn't she do that you thought might have helped?"

I guess I wanted my mum to acknowledge my illness as an illness. I wanted her to read about it and talk to me about it from an informed point of view. I wanted her to acknowledge just how difficult it was for me even if she couldn't really understand. They were always so angry with my behaviors which just compounded my feelings of guilt and shame. They never tried to understand why I behaved the way I did or have any sympathy/empathy. I felt huge pressure from them even when they were trying to help me into uni/work etc as they thought it would help, their time would have been invested in helping me recover. I spent most of my days desperately wanting to die and they would go on and on about job applications! They underestimated how it consumed me as I appeared to be 'coping' a lot of the time. Even if it doesn't seem like it, emotional difficulties can be there all the time.

I would have loved for their help navigating the nhs, they never spoke to my doctors/cpn etc so it took a long time for me to get the therapy I needed. I would have loved to be able to discuss the practical things I had learnt in therapy with them and practice changing my behavior. A lot of research suggests DBT is the most succesful therapy for BPD. This involves practical approaches to dealing with overwhelming emotions and i think it would have been helpful to be able to talk about these outside therapy. The more time I am able to spend in the present i.e. not listening to my internal voice worrying about past/future, the more I am well. My parents could have helped with this if they understood, by prioritizing providing opportunities to do this. Just taking me out to the cinema/ going for a walk/ cooking with me/ taking me shopping could break the cycle of torment in my head. When unwell it is difficult to motivate yourself to do this even if you know it works.

I wish they could be open and frank with me about how I felt, and about their feelings. They tried to hide everything difficult as they didnt want to 'upset me.' I didnt go to my grandpa's funeral as they didnt think it was a good idea. This compounded the isolation I felt and reiterated that I was different to everyone else.

Mostly I needed constant reassurance that I was loved and wanted and they weren't going anywhere.

I know this is long and waffly but it is extremely hard to articulate. When I am ill now my CPN always asks what can she do, how can she help. The most frustrating thing is that in crisis I have no idea. It often feels like nothing/no-one can help. My guess would be that your son doesnt know how he can get better or how you can help. There is a book called Overcoming BPD, A Family Guide for Healing and Change (Valerie Parr) which is very good. I could send my copy to you if you think it may be something you would benefit from reading?

"What was going through your head when you were at your lowest?
How did you get back up again?"

Again it is really hard to articulate. At my worst my thoughts are racing and relentless, I can not switch off from them. I relive every failing and a torrent of self abuse goes round and round my head. Im worthless, pathetic, a failure, fat, ugly, lonely, hated and not made for this world. I conclude that I am better off dead, my suicide would be a good thing for those that know me. Then thoughts of suicide whirl round my head, I consider different methods. These though patterns can last hours/days/weeks and there is no escape. It is exhausting yet I dont sleep. Nothing seems worthwhile, life seems meaningless and pointless. I feel like I have no real connection to anyone else. I question my identity, even my sexuality. The thoughts keep coming thick and fast. I close my eyes and beg that I dont have to wake up as me ever again. I deeply hate every atom of my being. It feels so intense it does swallow me and I cant attend to any other thought.

The emotions when at my worst are so overwhelming, I am not surprised now that I have acted into them so many times as many sufferers do. Self harm, suicidal behavior makes sense as it gives relief from the pain even for a short time.

I have come back from this place so many times as a tiny part of me wanted to live, just not like that. I have come to learn that the most horrific times do pass. I know it is of little use when you are in the thick of it but with therapy and time you begin to trust that you can endure the worst and there is a future at the other side. There is always hope.

tonightsthekindofnight · 06/09/2013 21:15

Sorry that was so epic. Took so long to compose I have missed three posts oops! Will come back later.