What to do when BPD person says they are fine but are not

[heronbird]

Im getting fed up going to meetings with clinicians, social workers and mother and baby psychiatrists there when they question my dd, she lies.

They believe her, they dont ask me and they seem to think she is fine. I cant say anything in front of her, I dont want to loose my relationship with her but I want them to know she is not ok.

They even seem to think she may not have BPD just because she says she is fine and has not had depression for over 9 months.

We had a meeting the other week, there was about 12 professionals there, they head lady asked her how long she had been ill for, she said about 6 months or something ridicules like that. They ask her when the last time she had a problem was she says when she was 14, when it was from age 14 to 18. Sure, she has been much better for the last 6 months but we must not forget that she was addicted to diazipam only 7 months ago.

They ask her how long has she known dh, she says 2 years, its only a year.

She says she sees friends, she does not, stays home all the time unless she has an appointment somewhere and then that stresses her out.

She says she sees me regularly, she does not.

She sees her P once a month for 15 mins and thats it. So the P thinks she knows dd better than me. P tells everyone in meeting that dd is ok.

I dont want to get her into more trouble but I feel like they need to know.

Last week, we met her new social worker, dd convinced her that baby didnt need any support, she was shocked, how did the board reach this decision that you needed so much support, she said. I dont think I am worried at all. You seem fine to me, and you have a lot of support, you have friends and family, your dh and his family too, which is not true either, dh is out every day from 7am to 7pm, then when he gets home he is so tired because he has worked so hard all day.

I could go on.

Should I tell anyone or just leave it. I hate all these lies. I know why she is doing it but they are so stupid to believe her. I think it makes their job easier.

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

[pessim-optimist]

Hi heronbird,

I don't remember from your previous posts:

Was your daughter formally diagnosed? (If so, is there a possibility for her original psychiatrist to communicate with the current clinicians?)

They do not seem to be too well informed regarding BPD (not being aware of the frequent tendency to lie)... .  

The question whether to talk to them or not is sticky... .  

Do you sense they would be inclined to listen, or would they not appreciate your input and see you as the problem?

You could gently try out the waters, if you are not sure... .  

[twojaybirds]

It's over-awing isn't it.

I saw my dd's P for a year w/o her  (she only went twice)  Each month I copied fb posts, emails and texts so he could help track her (in case she ever showed up again) and help me understand and make an informal diagnosis since she was not there.

A few weeks back my dd ended up back in ER for a psych eval and they released her because she "promised" she would return for t the next week.  I asked the P who released her how he slept at night?

[heronbird]

Pesim

She has a diagnosis from the best hospital in UK. So it is disgusting when the new ones disagree or dont trust me, and they often dont.

Its not that they dont know the diagnosis, its just that they are on another planet. They want as less work as possible. They probably see me and think, worse nightmare haha.

I think I could pick one of the professionals that may listen, in fact she emailed me last week telling me she really needs to meet with dd but dd is so busy she cant do it. (lie on dds part) dd does not want to meet up with this professional so just keeps making excuses, saying she is too busy. I want to tell her that dd is avoiding her, its not that she is busy.

Sometimes, I just think we should just do it ourselves, maybe we can work on her issues together.

Twojays,

Thats so bad isnt it. They are so stupid to believe her. What does it take for them to listen? death or what.

They wont take too many chances with dd when baby is involved.

Now how is that going to work, when dd has baby, she is not allowed to leave the hospital until social services and her P have a meeting to say she is safe to be discharged.

In the past, dd has same experience as twojaybirds, so dd says she is fine and they let her go. This time a baby is involved, so I will see.

[qcarolr]

They wont take too many chances with dd when baby is involved.

Now how is that going to work, when dd has baby, she is not allowed to leave the hospital until social services and her P have a meeting to say she is safe to be discharged.

In the past, dd has same experience as twojaybirds, so dd says she is fine and they let her go. This time a baby is involved, so I will see.

It is so hard to accept that we do not have control over anyone else. We can't force them to believe or not believe someone's word. Where are the records kept from previous times with your D? It is like the past does not exist sometimes.

So for me, it becomes about keeping track of the baby when it is born. Watching for any signs of neglect or depression with your D. Being willing to contact the social worker involved with details of what your are seeing if things are not OK with baby. Keeping a diary. And always hoping things work out for the better and not the worst.

It is hard to be validating sometimes with the professinals in our kids lives. That is what I think I need to learn to do. When I have a chance to be involved. Because DD26 will almost always not share the whole story. She does not out and out lie, other than saying 'everything is OK' -- well maybe it feels OK in that moment. Or more likely my DD does not want anyone to KNOW how empty and afraid she is. Like pretending everything is OK will make it so.

Heronbird -- my thoughts and prayers are with you and your D as this child approaches living in the world. Keep us posted how things are going.

qcr  

[NewWays]

Heronbird... .  

Your feelings were normal for me too!  I could not understand why after my wife was diagosed, she refused to continue her therapy... .  and would only agree to attend couples therapy for 1 or 2 times before stopping these sessions too!

But my education has shown me that it seems to be common for people with BPD to resist the idea of seeking out treatment... .  many are not willing to admit that they have a problem in the first place!

And regardless of how much influence you try to put forward, you have no control over what they do or do not do. 

Dr. Marsha Linehan, the psychologist who developed DBT, pointed out in a New York Times article and said... .  "If another person does not see the need for getting help, it is unfortunate, but it is their right to not do it.  Sorry!"

I know the lies and lack of what really is the truth really do frustrate you... .  but unfortunately that really is beyond control.

mrrlk

[vivekananda]

Hi HB!

It is frustrating isn't it?

Now, I don't know if it will help, but on the new Australian national Guidelines for BPD, there is a template for the treatment for BPD. The guidelines have all sorts of ideas about how to manage treatment for pwBPD, including making one person the co-ordinator of all professionals.

I would get hold of that first diagnosis re BPD from that hospital and a copy of the treatment plan template (see page 137) www.nhmrc.gov.au/guidelines/publications/mh25, read it carefully and then ask to speak to them with both those in hand and copies for them - then ask - what are you doing?

or something like that ... .  

Gee, HB, I don't know - you are wise enough to know how best to manage it I expect. Perhaps if you had a T who could meet with them too? Could you let the sympathetic one know what you worry about?

good luck HB,

Vivek    

[jellibeans]

heronbird

I am confused... .  originally I thought you said your dd was doing good... .  had 3 weeks until baby is born... .  worried about depression after birth but I thought she was doing good?What has changed?

I still hear so much worry in your posts... .  I can relate to that because I am big worrier... .  it has been my downfall at times... .  I anticipate trouble I have a hard time living in the moment but I am trying to change that.

I have been where you are... .  my dd had an evaluation at her new RTC and the results do not reflex what her therapist and P have been saying at all... .  but I don't think I need to put my focus there... .  I know that report in not accurate and when she comes home she will go back to the same T and P... .  I don't know what to tell you but she needs to be the one dealing with her doctors... .  if she chooses to lie she will be found out... .  the pwBPD can not hide their illness... .  

I am sending you a hug and I hope she really is better... .  I think it is very hard to parent your dd when she is an adult. I wish I had some better advise for you. You know her best but maybe that is also a disadvantage. For me it is hard to leave the past behind and it is something I really need to remind myself of everyday... .  I hoping for a good future for you both.  

[pessim-optimist]

hi heronbird,

I re-read your post, and thought: dd has been doing well lately, maybe she is hoping everything will be ok, so she does not want to talk about her problems... .  

I know you are concerned about the professionals. Time will tell, who will listen (maybe that one lady that is trying to meet w/ your dd?).

And it's true, with the baby, they will hopefully be careful.

I also wonder if your dd is afraid of them interfering in the future?

[heronbird]

mrrlk, thanks for your reply, I like Marsha but Im sorry, I dont agree with that. Not one bit. If your old mum was walking the streets with no clothes on in the freezing cold, is that her right. Would we just let her do it and say, its what she wants. No. They would help her, even if she didnt want help.

I prefer what Valerie Porr has to say on these things. She seems to have an answer for everything and she is always right haa.

I dont want to be in control, the goal for me is to be able to back off at some point and trust these professionals but as it is I dont feel like I can trust them when they dont seem to know about how to help dd.

We had a meeting last week with a new social worker, she said that she hadnt read any notes so could dd fill her in. After dd told her everything, she said this is so silly, you shouldnt even be on this plan, why did they come to this decision, and she needs to go through the stages to get her off the plan. I know this wont happen but this is how convincing dd is.

So I asked dds care worker today if they all believe dd at these meetings we go to. She said well, yes because she is always so convincing, she looks well and has make up and dresses nice, so we think she is telling the truth.

Pessim, yes I agree with that. But I know dd is so scared of them taking the baby. Thats why she does it.

jellibeans,

I am not worried, Im really cool about it all. maybe its the Mediterranean in me, I might sound worried. Those Med people all sound like that haha

Im also good at confusing people in writing things haa. Yes dd is doing well, much better. Having said that, she has still got BPD so she still has issues, just not so serious as 7 months ago.

Well Viv, I did speak to one of the clinicians, so that did help.

[jellibeans]

I hear you... .  my dd can look very normal when needed... .  hang in there... .  I know everyone must be excited about the baby coming... .  please let us know when he or she arrives... .  

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

[heronbird]

It is just so irritating when these so called professionals dont hear us, they say they know about BPD so you would think they would know about it

[vivekananda]

I was talking to my T today and based on what I reported of conversations with dd, she said that my dd's T would probably consider any contact from us as inappropriate (I think the word may have been hostile... .  ?). I said the National Guidelines for BPD say the family should be involved, the National Guidelines for PTSD (which he has diagnosed her with) are even more adamant that the family be involved. She said yes, all the guidelines say that but, what is needed is a culture change amongst the psychological profession, they are used to working on an individual basis and to include the family in their considerations is too hard... .  

So I felt rather sad after that... .  and a little bit angry too.

We don't have to change just ourselves, we have to change a culture too?

thinking of us all now,

Vivek    

[qcarolr]

Vivek  - so how can we change ourselves and educate the psych culture one professional at a time? Do you think there would be enough mass to start the ripple that turns into a wave and is a tsunami when it hits the beach?

How can we advocate for this - in psych education, legislation/insurance, organiations like NEA_BPD and NAMI? How can we continue to support the rights of patients yet include the rights of the family that is being terrorized in some way by the patient (behaviors, treats, internalized or externalized by our pwBPD)?

I have a new T. She shared today that she is learning a lot from me. She said when I am ready there are many others who could benefit from my knowledge and experience -- and my love affair with words words words. So maybe this will be a pebble in the pond that travels down the creek - river - into the sea that touches all the continets.

We are tortises you know - nothing happens fast enough maybe for our kids. But I have so much hope for my gd. And those of us that sadly (and maybe gratefully) don't have gkids - why not adopt one in your neighborhood? Give a mom a little break. (or a grandma raising a gkid)

qcr  

[pessim-optimist]

It is just so irritating when these so called professionals dont hear us, they say they know about BPD so you would think they would know about it

Ya think?   

We are tortises you know - nothing happens fast enough maybe for our kids.

I wish, qcr! Those tortoises live a lot longer than we do. 

[vivekananda]

You know I have a lot of hope that this site here can continue to develop and develop. There have been many changes here over the few years it has been going. This is where we can get a critical mass perhaps. In the meantime, I continue to learn and learn, understand and understand.

There is an online research project being undertaken by Wollongong University (Aust) on being a carer for someone with a PD. I found it on Randi's blog. Perhaps I should post it here... .  It is a bit clunky, but if you persevere, there is an opportunity for input. The research is low key, to go towards a journal article on perhaps as a preparation for a PD thesis. But this is one way we can have influence. The researchers obviously have a bit to learn about the differences in being a 'carer' eg being a parent of and adult w BPD... .  

Also, it's not just in regard to psychologists etc in relation to BPD, but all the other mental illnesses too. The National Guidelines for PTSD in Aust also emphasise the importance of the family etc. So, it's not just our BPD family that is affected... .  though perhaps it is worse for us given the nature of the illness.

And then those tortoises are the ones who win the race, don't they? 

We learn, we talk, we organise, we TAKE OVER THE WORLD (wicked, maniacal laugh     )

lots of love to yas,

Viv   

[heronbird]

Viv, that your last two messages are so right, its what I thought about Ps. Im glad you reminded me about the national guidelines.

I do keep emailing the manager of the Psych team telling him how invisible I feel and that dds p does not want to include me. So he says ahh thats so bad tell me more and Ill look into it.

So he says all the right things but nothing changes. I dont like dds P, she never wants to get me involved, and thinks she is an expert on my dd. She is leaving next week, dd likes her dd says, no one cares, she is just leaving.

We are in it for the long haul, they just want to tick the right boxes, its just a job to them, they probably get fed up of it all.

Sounds, negative really but I stay positive. I am glad I have learnt all I have and I have meetings regularly with commissioners of MH in my area, they are trying to change things, its just not fast enough. We cant wait.

[vivekananda]

Give me the strength to change what I can, the grace to accept what I can't and the wisdom to know the difference between the two!

If we continue to work on ourselves, we are doing what we can. When there are two of us doing that, it doubles our effectiveness - and so on. When we support others here, we are making it better. Most of all we need to look at ourselves and make ourselves better people, so we are the sort of spokespersons that do our children credit.

thinking of you HB with Cheers,

Vivek