Our teenager has BPD

[Monty1971]

Hello, I admit, t's taken me a while to accept our daughter has BPD.  She has always been a little 'different' growing up, always able to manipulate a situation that benefited her, even as young as 2 years old.  Though she had certain traits, she was also incredibly shy and immensely uncomfortable to show any of her feelings openly, especially in public places.  For example, if she hurt herself by falling down, it was obvious it was painful, but she would stand up and not cry, until she was away from stranger's looking at her.  Our daughter would attend nursery, on the way down, we'd be skipping, laughing, as soon as the door to nursery opened, our daughter would stand still and look very sad.  She learnt very early on how to get people to notice her and be nice to her.  Based on this behaviour, I doubted the sincerity of what she was going through as a pre-pubescent and into teenage years.  There have been OCD behaviours but not intense, we discovered later, that when our daughter was 8-10 years old, she used to walk passed bedrooms and whisper, "sorry" to each door.  Her food and items around her were to be even, pressure on her finger's to be even.  The psychiatrists at first diagnosed her as 'ocd, depression and anxiety' then very quickly, she was diagnosed as being on the Autistic spectrum. It didn't make sense to me.  Over the next 3 years she was given a cocktail of medication, therapy and cbt work.  She appeared worse, more anxious, until by the time she was 14, she took her first over dose and started to self harm.  By the time she was 16, she had taken 12 over doses, some were mostly self harm, poisoning.The other's were serious attempts on her life.  She would wait for us to sleep at night, then she would take all the paracetamols she had bought.  At this time, we had already been accused of child abuse, child neglect, we'd been to meetings, we have been pulled this way and that way. Eventually, we were cleared of any kind of abuse, though after being told our family was toxic, it's impossible to forget and even more impossible to forget.  Everything we did, was for the benefit of our daughter.  She was so clever, she would think of all different ways to get hold of pills and many different ways to harm herself.  I remember once, a social worker told me to take everything out of the house which could be used for self harm.  I looked at her and shook my head, it would be better to place our daughter in a room with nothing in it! I told her that, our daughter would use anything.  The hardest part is trying to communicate to the professionals, that you think your daughter is really ill.  Though, actually, the most hardest part was watching our daughter and in the end the way our daughter treated us, it made me sad because even though it hurt what she did or said to us, the most painful part if how she would feel later.  Once, we thought she didn't feel as much as us, she had never hugged us, we had to grab hold of her and in a laughing way, try and get a hug, she would laugh too but she just didn't want to.  I have never heard my daughter say I love you Mum.  But I knew she did, if that makes sense?  In the end, I begged the psychiatrist for a second opinion, I was in tears.  Our daughter over short periods of time, can and could control how she felt, she would be talking and smiling, but on our way home, she would fall to pieces.  She had been seeing the same psychiatrist for 3 years, he never once saw the other sides of our daughter, until the end.  He caught a small glimpse of a different child just before going into a tier 4 unit.  Our daughter was unable to sustain this 'normal' person and over the weeks, everything came out, it was heart breaking to see and hear, we had more meetings and we met an incredible Psychiatrist, in one of the meetings, he told us she had scored high in a certain test, that mixed with what they had seen, he was positive she was BPD.  We'd never heard of it, at first we were almost relieved, we had a name! then when we understood what it meant, it scared us so much, it still scares me.  She is still in a unit, she's been there for 2 months so far.  Everything we knew, they now know.  I hate BPD, I don't understand it, it makes my child hurt.  I have only recently accepted that this is now for life for our daughter.  We blamed ourselves at first, we went through her life and tried to find out what it was that made her get this, because that's what we thought of it.  Our daughter is beautiful, she comes from a loving home, we live in a beautiful place with woods and rivers.  We're not well off but everything we did was for our three children.  The guilt never goes away, even when you do know it wasn't anything specific, it's my fault, I must have said something or allowed her to watch something on TV without parental control! whatever it is, it's my fault.  I'm the mummy, it is my job to look after her and something went wrong.   Today? it just seems to get bad, being in a unit isn't a good thing for our daughter, the illness she has means she will only get worse in an environment like the unit, mixing with other's and taking on their problems too.  But she can't come home because she is far too risky! she wants to die, I didn't even believe that at first, I thought maybe it was her wanting to stop this horrible feeling inside of her.  I've accepted now, our daughter doesn't want to live anymore.  The most precious baby I helped to create and gave life to, is now doing everything she can, so she can die.  The guilt I feel, is 'normal', I know that, it doesn't help though.  I've had to try hard to put my emotions aside so I can help our daughter, she can be so lovely but now? she is able to tear my heart out, but I will never reject her or give up on her.  I am struggling to understand, there is a new way I can speak to her but I'm 45 and I don't know how?  I've cried and cried, the realisation that this is it, breaks my heart.  I am so full of self pity, it disgusts me but how do I get strong again, I'm strong when I visit her and I'm strong at meetings, I just want her home, I want all of this to go away, I just want my daughter back, it's a pain like grief.  Sorry for going on so much x

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[livednlearned]

I'm so sorry it took all those years to understand what was going on with your daughter, and glad there is finally a diagnosis that helps make sense of things, if only a little bit.

You've been through a lot and I imagine the accusations have been horrifying. Meanwhile, you are fighting so hard to keep your daughter alive and help her get better.

It's hard to get off the guilt cycle. I sometimes think we turn to guilt because it feels less frightening to blame ourselves than to think we have no control over what happens to our children.

I have read more books on BPD than I care to admit. There is one written by a BPD sufferer called Buddha and the Borderline that helped me see inside her world, to understand better what it was like for her. I know it is only one person's experience, and everyone has a different set of symptoms and circumstances, but her story gave me a lot of compassion and helped make sense of what often makes no sense. She even talks about work she did with her DBT therapist to name the different "selves" that cycle through her, and one of them is based on her OCD and need to control.

What sort of treatment is your daughter receiving in the unit where she is staying? What kind of plan is there for her treatment and recovery?

[473harman]

Monty 1971 - so sorry to hear of your troubles. Our 16 year old was also wrongly diagnosed for several years. When I heard the diagnosis I was also relieved that it was "something"

You did nothing wrong - you did the best you could at that time. Critical to DBT is being non judgemental, especially of yourself. It is not an easy task - I go back and forth with acceptance and sadness that I could've helped her earlier.

I have also read "Buddha and the Borderline" and found it helpful.

BPD is a tough diagnosis, BUT - there is so much that is now known to help sufferers and their families. The elements of DBT are amazingly helpful to BPD patients and their families.

I would seek out resources in your community. For both yourself and your daughter. Where are you located?

[Monty1971]

I hope this is the right place to reply to the two member's who replied to my post.  Our daughter is in Wessex House, Bridge End, near Taunton.  Clive North is the unit's psychiatrist. We have been told that our daughter will probably get worse in a unit, due to her BPD.  But if she comes home, she is determined to kill herself.  At the moment it is really hard for our daughter to reason, it's as if her brain is in a hurricane.  I'm going to order the book you suggested, at this time, we are prepared to do anything.  When I visit her, I only end up staying for about 10 mins, it seems too much for her to cope with.  Then I drive the two hours back home and when I get home, she calls me saying she feels guilty she was horrible to me, I explained to her it was ok, even seeing her for 10 mins is better than nothing, I told her I wasn't cross at all.  During our telephone conversations, her mood changed three times in a 7 min period!  I want to know the correct way to speak to her, I want to be able to communicate with her without her getting upset, angry, nasty, tearful.  She is so lost, at times I can't even think.  I drive off and find a quiet place to scream and cry, before going home.  We have a 13 year old daughter, she is dealing with a lot too and the last thing she needs to see is me crying.  The worst this is not being able to help her, in that moment.  I sometimes don't even know which one is my daughter, is she really the nasty horrible child, or is she lost inside and my real child is the sad and lonely one?  It really helped hearing from the two members who replied.  I could relate to everything they said.  I agree, the guilt is probably easier to deal with.  Even now, I sit and think, was it because I said a certain thing, maybe I was too soft, or maybe ... .it just goes on and on.  I tell myself, it isn't about me and then the cycle of guilt continues, it's madness.   I also don't want my daughter to have this and I know, nothing I do or say will make it go away.   We received a call today,

The Social worker at Wessex house informed us that the section 2 expires today, that they will be moving towards section 3.  My husband is the designated relative.  I was asked what my thoughts were, it's turmoil, a part of me wants her out of there, before she gets even worse, part of me is scared of her coming home.  I sometimes can't believe it's got this far?

They have opt the dose of quetiapine to 150 at night and 40 day.  They've weaned her off diazapan and mertazapine.  The anti depressant wasn't working at all.  The give something called pnr?  it's meant to relax her when she gets agitated.  They say the 6 week course for DBT is unavailable to her because of how far we live.   Hopefully when our daughter comes home, she will be able to start DBT, I think we have Linda in the South West.  My worry is, if she gets worse in the unit, will there ever be a time she can come home and cope with going on a DBT course?   Our daughter also has traits of asperger's, they are not 100% convinced she has it, though she shows certain traits, also she has OCD, (severe) I didn't think it was that bad but apparently OCD isn't just about being tidy and clean (our daughter is neither).   

At the moment, a plan is being put in place, not sure yet what it is, we hope it means that slowly our daughter can come home, the risks need to be managed.  I will admit, just before she went in, I was a mess.  I was her only company, I didn't realise I wasn't coping very well.  I would shake, think it's the adrenaline for fight flight?  I want all of us to be strong for when she comes home,  for her really, she deserves the best care.  I love her so much, missing her, I have  an ache, she is such a lovely girl at times, it's the other parts of her that can be so hurtful.  I want to say thank you for the replies I got, it was a relief to hear similar thoughts from other parents x

[Bright Day Mom]

Monty, I am sorry your family is going thru such turmoil. Our family's story is very similar.  Our D16 was finally dx w/BPD after 1-1/2 yrs and 5 hospitalizations. We tried every option Intensive Outpatient Program, Partial Hospitalization program, in-home therapy and couldn't stabilize her enough to be home safely.  Ultimately she was admitted into a residential program.  Our family, daughter included, feel it SAVED her life and our family! 

It can get better with the right combo of meds., therapy, and lots of practice.  The tools and lessons to the right were extremely helpful assisting us in communication.

I know how difficult it is when in crisis, during this time while she is hospitalized try to educate yourself as much as possible and catch up on some much needed rest!

Are you meeting with the hospital social worker soon?  Just wondering if residential programs are available in your area and what their recommendation would be. I made a point of telling the hospital I didn't feel confident that I could keep my D  safe home and that she had been steadily getting worse and more unhinged. They took that into consideration, particularly since my D's friend had completed suicide months prior.

[livednlearned]

I want to know the correct way to speak to her, I want to be able to communicate with her without her getting upset, angry, nasty, tearful. 

There are ways to talk to people who are emotionally dysregulated. It doesn't cure them, of course. And it won't prevent the emotional roller coaster rocket ride. It can help though, and sometimes tiny little changes are what help us stay afloat.

I found that asking validating questions was very helpful -- it demonstrated that I acknowledged and accepted the feelings, while also putting responsibility back where it belongs. You can click that link to read more (it's excerpted from a book).

Loving Someone with BPD by Shari Manning is also very good at explaining how to communicate, as is Valerie Porr's book (name escapes me at the moment). I Hate You, Don't Leave Me also has some very helpful communication scenarios for double-binds, including a loved one who threatens suicide (the book is a little more oriented toward significant others but the communication skills work with anyone).

It can be very complex trying to figure out how our BPD loved ones respond -- with my SO's D19, she masks her emotions to the point her face is completely blank, like no one is home. I have found with her that she needs to see facial expressions from me, that neutral facial expressions make her think I'm mad. Apparently there are studies that people with BPD interpret neutral expressions in negative ways, so I've had to work on that with her.

Some people with BPD also feel invalidated when we appear calm in the face of their distress, which is not intuitive at all! With SO's D19, I have learned there are times when it makes sense to respond with more animation in my affect, and not mute things so much.

What your daughter needs, and probably cannot articulate, is that she needs you to take care of yourself so that you have the strength to abide her. She struggles to abide herself, and externalizes her emotions. That means she may see how others are emoting as a sign of how she is to feel. You can see that some of these skilled responses contradict each other -- learning how to respond in ways that help them regulate their feelings is not intuitive. None of us gave birth to our kids knowing how to address such extreme sensitivity, though I do understand the guilt and find myself going back to that deep pool over and over, trying to puzzle things together.

Bill Eddy is someone who has written about BPD and he writes that "Whatever has happened before is less important than what to do now," and that is a good motto going forward. It actually helps people with BPD if we position ourselves in a frame of mind where we are not subject to feeling such intense guilt and distress, although I know that is easier said than done.

Keep posting  

LnL

[Monty1971]

We've just been told that there is a possibility our daughter could be moved to Torquay, we live in Plymouth, it would be brilliant to have her closer.  The meeting to discuss section 3 is happening right now, we're waiting to hear back.  I'm not sure what a PQ is? I think it's a more secure unit? At Wessex House, they don't have a facility for more intensive care, Torquay does, next door to an open ward.  The problem is, our Daughter is refusing any changes, she told me that it's taken the last 2 months to trust the staff and feel comfortable sharing her thoughts with them.   Any big move will set her back.  But if she doesn't move to Torquay and she gets worse, then they will PQ her in Woking? or Scotland?   

Our daughter has a face that shows hardly any emotions, during her younger years, people thought she looked sad, it was just how her face was.  In any situation, like getting hurt or having a great time and receiving praise, no emotion on her face.  Then later when she is with me, she will tell me how sad/happy she felt.  She has never shown her true emotions, except with me and sometimes her Dad.  In this unit, she has opened up in an amazing way, so proud of her.  At first people think there is nothing wrong with her.  She is kind and speaks well and shows no distress at all, though underneath she is dying.  Our daughter also takes on the behaviour and character of other patients, this is the main reason why being in a unit is not great for her.  But she is also unsafe and like someone replied to me, we also think, if she hadn't gone in, she wouldn't be here now.

I'm going to look at the links and do some research.  You're right, we will use this time to try and find the best way to talk to her. I didn't realise how much help ad resources were out there.  Thank you x

[Bright Day Mom]

It would be wonderful if she be could closer to your family.  I hope the meeting progresses well. 

We had the same sense of urgency the last time my D was hospitalized and waiting for residential placement. My husband and I knew she was getting worse in the unit as the saying goes, misery loves company and you become your environment. We knew we had to get her placed elsewhere and back to school... .some sense of normalcy was needed. She wasn't in favor of it either as she became quite popular on the unit and even began running some of the groups.  Let's face it, sometimes the answer is no and we have to be the parent. You may be able to take some of the negative pressure about the move by putting it onto the hospital/doctors. They are temporary and she may never see them again, she's YOURS forever.

Remember, lots of validation.  Let her know you are LISTENING. It took me a long time to do this, but since I continue to do so she feels I "Love" her more! 

[Monty1971]

Hi, received a call this morning, our daughter is now on section 3 and tomorrow morning she will be transferred to Torquay.  They have open ward and PQ right next door.  They will only tell our daughter tomorrow morning at 8am, an hour before they take her to Torquay.  She will be in extreme distress, we've been advised not to tell her she is moving because she is very unstable at the moment, they don't want to have to restrain her this evening.  I know my D will be so unhappy, she told me a week ago that she can't go anywhere else, that it's taken 2 months already for her to trust some of the staff and patients.  She said she just can't do it again, I get what she means but we have to look at long term.  If she stays where she is, there is a huge chance she could be PQ'd and that means being sent further away.

I don't think our D is thinking of the real World, (does that make sense?) being in the unit for 9 weeks, not allowed outside must be so hard for her.  I can't think of the right words, it's as if she can be whatever she wants and maybe she feels safe?  Which means that when she is moved tomorrow, it will be heartbreaking for her, she already feels that the staff are trying to get rid of her, she called me yesterday, very upset, saying that the staff hate her.  I think the move tomorrow will cause her to be more unstable, angry, hurt and lost.   I can't even go there in my own mind, just knowing what will happen, breaks my heart so much.

It's going to take even longer after she has been transferred to trust anyone.  I hate this illness so much!  she doesn't deserve any of this.  I can't even protect her.
We are happy she is moving, it means we/I can visit more often, she will be able to do DBT, if she gets worse, the PQ is next door, so no more strange places for her to get to know.

I was thinking the other day, I have never felt so many different emotions in a 30 min period than I do with our D at times.  It's incredible really, she can go from being nasty to lovely in such a short period of time.  Then when she is 'up' and talking fast, having loads of energy and laughing, joking, it's hard to believe that she was that person before.  Then the mood changes and it all starts over again, a never ending cycle of extreme emotions.

Sometimes it gets so hard, I've wanted to run away, has anyone else had similar thoughts? I've almost convinced myself that everyone would be better off with me gone.  During these times, our D is at her most hurtful, she will say such horrible things to us, the looks that she gives, it's like having a complete stranger in the house.   Then within an hour, it's over, she is talking to me as if none of that happened, so instead of being upset with her, the relief she is nice again almost makes me forget how nasty she was.  I hope I'm explaining this enough?   

I believe we can love some one too much, one of the mistakes I made recently, was to think our D was feeling, what I was feeling, I would be thinking of all the sadness she feels and when we spoke all she wanted to know, was what was for Supper.  I had spent all that time internalising and thinking she was going through a turmoil when in fact, she hadn't.  Just because I feel it, doesn't mean she does.

We also suspect our daughter shows some narcissistic behaviour, this makes me feel so ashamed, she has had a loving upbringing, there have been no incidents in her life, we have never hit her, in a way, we've loved her too much.  She always looked sad, so we gave her more love, attention.
We also suspect, she doesn't have empathy, it's hard to explain.

Dreading tomorrow, what will be, will be.   Thanks guys x

[livednlearned]

It can be helpful to read the memoirs of people who recovered from BPD -- Get Me Out of Here comes to mind. In it, she is hospitalized and then partitioned when she becomes dangerous to herself and others. It is at that point, when she is at her lowest, that she begins to see a path out of the pain, one slow step at a time, of her own accord.

We don't want to see our loved ones go to the darkest place and sometimes that is where they must go in order to recognize how much of their pain and suffering is in their own hands.

It is not pretty to watch and we would not wish it on anyone. And at the same time, it is the reality of what are incredibly tough situations.

I'm so sorry for the sadness, and the suffering. Her feelings change so quickly in part because of who she is (genetics, for one), and also because she has resisted those feelings. With help from DBT clinicians, she will learn to accept herself for who she is, intense emotions and all.

Hang in there, and keep posting. 

LnL

[Monty1971]

Thank you, that has helped reading that, very similar to what my husband said a few weeks ago.  He told me that maybe our D needs to hit rock bottom, for her to see.  At the moment, it seems our D is trying to be the worst patient.  When she first went in (informally) she stayed about 5 days, she wanted to come home, at the time, our D was still 'hiding' her illness, so they agreed for a dismissal.   Within minutes of being home, she self harmed really bad and then took an over dose.  I asked her where she got the pills from, she had been storing up the day time quetiapine.  That day, we drove her back to the unit.

Each time our D told us about different sectioning, she seemed shocked, a few days later, she is on a section 2.  Our D told us about certain patients who are on section 3, she was shocked, the last day of section 2, she is sectioned 3.  Now she is talking about PQ?  I will sound terrible now but it's almost as if a part of her wants to be sectioned or at least seen as being so ill, there is a need for the highest treatment.  So, when I read your reply, it made sense.  I'm trying to save her, while she is racing the other way.

On one particular visit, I think I stayed for roughly 20 mins?  she didn't want to speak, was agitated with anything I said.  I was gentle and hugged her, then told her I was going and I'd see her soon.  Ten minutes after getting home (2 hours) she called and was panicking, saying she was sorry, that she didn't remember anything.

We've also noticed a few facial changes, her usual face is blank.  On a couple of occasions when I was telling her something funny her sister had done, her face showed disgust. 

I remember about a year ago, I asked her if there was anything I could do, I was desperate to help her, I asked her why she was jealous or angry, she replied," I am always jealous", " I am always angry" she told me the guilt she felt was so bad, she wanted to die.

We have to wait and be patient, coming from me, that is so hard, I have wanted to 'fix' her, I have wanted to make her all better.   All we can do is wait and be there for her, no matter what.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Yepanotherone]

Hi there Monty , I just wanted to say hello and to say we all walk with you   my DD16 is currently attending an IOP program ( intensive outpatient therapy ) program three days a week so for these three days we drive an hour up the road , then I find somewhere to sit for the three hours she's in the group until it's time to drive home again , so I tend to use this time to peruse this site . After 5 hospitalizations over the last 12 months and varying diagnoses , we finally got
the formal diagnosis of BPD and bipolar disorder . We already knew this anyway after the last year we've had ! And my DD says she has known " something wasn't right in her head " since she was 12 years old .

 I know and relate to everything you have said . The guilt , the fear ,the constant questioning of oneself and what we might have done differently , the feeling that we need to "fix" our children and the pain they endure . The constant feeling of walking on eggshells , not knowing from the moment you waken up every single morning , what this day shall bring . I go through periods of feeling hopeful , other days I feel hopeless and longing desperately for our old family life again when life was easy and relatively stress free . Often I wonder what the future holds , I'm definitely grieving for the life I thought my DD would live and that hurts badly . I was out to dinner with friends last night and as they talked about their daughters progressing with university applications , I wonder if my DD is even going to make it through high school ( it's not looking promising !)and the feelings of envy surface ( I'm not proud of that !).  I just want my girl back . The one who was happy , quirky , eccentric , funny , opinionated and passionate about life . My DD was always " different " but in quirky ways . Now i see a beautiful young girl who it seems has had her very soul ripped out  if someone had told me a year ago that our lives would be like this now , I just wouldn't have believed it .
Like you , I'm still learning . For a few months I read nothing other than stuff about BPD and my DD's therapist actually told me to stop at least for a while , because I was knocking myself ill with anxiety about the future ! So admittedly , I've not read everything available on this site , but I need to get back into learning the skills , as much for myself as well as for my DD because I'm aware I'm not doing very well of late with my communication and validation skills .
I'm a Scottish lass by the way , living in the States   keep posting Monty , it really does help xxx

[Bright Day Mom]

Monty,

I know today will be a difficult day and hope you gain strength with each passing day.  This will be a big transition for your whole family and ultimately may save your girl's life.   

[Maresa]

I just wanted to say thank you for letting me know I'm not alone.  My 15yr old daughter is in her 7th facility for this year and has been there since August 8th.  The one before finally diagnosed her with BPD but where she is now refuses to because of her age which interferes with her treatment  (I believe).  But I may be a little frustrating to the treatment team since I'm a therapist for a living as well... .