BPDFamily.com

Hello  :hi:
I haven’t posted in a while and so much is going on in our life that I couldn’t possibly explain it all.  I really just need to vent and I thought this might be the place to do it.

My DD16 has been inpatient for 3 months now, except for the 10 days over Christmas when the ward was closed (all went well except for the last night when the PACER team (police, ambulance & critical early response team) were called or the time she was suspended from the private hospital for accepting marijuana from a random person and having a severe psychotic episode/vomiting etc.  She was admitted to the high care section of the public hospital until she could return to the private hospital.

My DD has been hassling the Dr for a diagnosis which he has been reluctant to give due to the complexity of mental illness but today caved in and told her she has Schizoaffective disorder with BPD traits although that can’t be diagnosed until she’s 18.  Well that fairly much covers all mental illnesses I think.  Argh  :cursing:

I’ve just started seeing a psychologist who is experienced with BPD/complex mental illness and I’m hoping she can help me navigate all this.
 
It’s emotionally draining and financially draining but we’ll do whatever we can for our beautiful daughter as I’m sure you all would too.  Not many people understand what we are going through and that can be very isolating, it feels very comforting to know that my post will be somewhat understood and that I’m not alone.

Thanks for listening x

 Whoops, trying to change the heading and it didn't work and now I can't delete this post - enjoy your night/day whatever it may be and look after yourselves x

Hi ForeverDevoted

It's good to hear from you, along with others I have been thinking of you and your beautiful daughter.


FD hugs to you   We and our girls appear to have much in common. Quiet sensitive pwBPD, Schizoaffective disorder, BPD traits/ BPD. Hasslers for a diagnosis.

We're right her with you.

WDx

Thanks WD,
It’s good to hear from you and yes I agree we have a lot in common. I remember feeling a little envious of the relationship you had with your DD a while ago and was hoping that I might have that again with my DD in the future - I’m happy to report that I can see that happening but it’s a slow process.

My DD is not shutting me out as much which I’m so happy about but I’m a bit concerned about the amount of time she’s an inpatient as I’ve read that extended hospital stays are not good for BPD patients but maybe it’s needed for schizoaffective disorder... .it’s just so really confusing.

Hope you and your daughter are well x

Hi FD

FD thanks for asking, we are both doing well. It is heartening to hear your DD is not shutting you out as much, you are making progress with your DD is wonderful to hear, keep working on your core relationship, it's key as you'll read. You are right it is a slow process and you've a teen in the mix. Sometimes my DD just does not want to talk, eg she feels irritable la de dah, wants quiet ~ she disappears to straighten herself out, sit with her feelings. I’ve learnt not to take her mood personally, there’s a lot going on in her mind! She’s doing her best, it’s not about me.

FD my DD was not diagnosed schizoaffective until last year and I only found out because she passed me all her medical records to read, some I'd read before, others not. She kept asking if she was bipolar, she said she felt she was experiencing mania, she wanted an answer. Answers help her. The dx still confuses me as you say it's a mix of much, she was already diagnosed with depression, psychosis... .and since the dx her meds have not been changed so I can only assume they were already treating her. But the record did not state which type:

Schizoaffective disorder manic type In this type, you have both the psychotic and manic symptoms, occurring within one episode.
Schizoaffective disorder depressive type In this type, you have both the psychotic and depressive symptoms, occurring at the same time during the episode.
Schizoaffective disorder mixed type In this type, you have psychotic symptoms with both manic and depressive symptoms. However, the psychotic symptoms are independent and not necessarily related to the bipolar disorder symptoms.

Did the Dr share with you which type? I think I need to ask my DD about this, when she next shares how she’s feeling. I’ll report back. The bottom line is she's managing very well FD despite the complexity, it's small steps. It’s great to hear you’ve engaged a psychologist for support to help you navigate, are you finding that helpful?
 
I appreciate its early days I'm wondering how your DD received the diagnosis. The hospital stay, I think you are likely right, the Dr is working to help stabilise your DD, though appreciate your concern about the length of time from what you’ve read. How’s your DD taking the stay since returning in the new year? Are you getting any helpful information from the Dr?

How's the self-care going FD?

WDx

Hi WD,
Yes I’m very relieved my DD is not shutting me out, she’s even allowing me to cuddle her goodbye and saying ‘I love you’   but it’s only been a week so I won’t get ahead of myself.  I will work on not taking it personally because as you say - it’s not about us.

When I asked the Dr about the diagnosis he told me not to look too much into it as he wouldn’t normally diagnose but my DD and him have this ongoing battle where she repeatedly demands a diagnosis, this day she packed her bags and said she would discharge herself if he didn’t comply!  
I can certainly see the characteristics of schizoaffective disorder and I would say it would be mixed as she has mania and depressive symptoms.

As for the hospital stay - she would like to get back to school but the Dr wants her there as long as possible, they are trying to coordinate half a day next Friday, she would like to do school from the hospital but the Dr doesn’t like that either (except for next Fri which he said may or may not happen).
The longer she’s away from hospital, the more questions will be asked and she doesn’t want anyone to know so it’s making it a bit difficult, she’s also worried about having to repeat the year which is understandable.

I’ve only had one appointment with the psychologist but I found her really easy to talk to and she’s very well researched on BPD and complex disorders so I think it will be helpful considering I find my DD’s Dr hard to talk to and I don’t get much from him.

FDx

Hi FD

Sounds like you've hit gold with the psychologist, that's a really smart move on your part. I'd never thought of engaging a psychologist to support me as I build my knowledge, what a personable way to learn. 

   It takes a great deal of strength to be very strong and very balanced. The 'shutting out' I now call 'going away for a while' (somehow those words help remind me to not take it personally) and I think to myself, my loving, engaging DD will be back in her own good time and each time I can build upon the trust we share, she knows I understand, she knows I'm safe. Overtime I've found little mantras that help me keep in wisemind. Another thing that helped me is DD saying, Mum there are somethings I can't talk to you about (she's talking about her mental health here), it was her way of saying please don't take it personally, I don't want you to hurt.

This makes me smile, it sounds familiar. Early 2016 my DD threw a HUGE wobbler in the hospital ward (self harm) for all to see, hear when they told her she was being discharged. At that point she'd been on the waiting list 7 months for DBT. She saw RED and said she's not moving until they offer her help, go sort it out, comply!   And they did, they contacted the head of mental health (this was a Sunday night) and the Monday morning she was transferred to a small Women's Crisis Home (brilliant place ) where she stayed for a month, she was in an environment where she could help herself. I received a text from her that night saying Mum I'm glad you were not here to see my performance, it was quite spectacular, it worked. Sometimes our children have to 'fight' to get their needs met. Now my DD has learnt to use DEARMAN to communicate her everyday needs. I can understand the Dr saying not to read too much into the dx, for some of our children its helpful, it validates their struggles, they feel less alone.

There, plenty of my personal stuff, hope some of it's helpful to you.

Your DD wants to get back to school, how do you feel about that?

WDx

Yes they sure know how to get people to comply don’t they! It worked which is good but it’s a shame it had to get to that in the first place.

My DD has also said she can’t talk to me about her mental health and I suppose I have to accept that for now, I’ve told her I’m here for her when/if she’s ready.

Im really glad that my DD is looking forward to returning to school, so far she’s been two days for a couple of hours each day and next week it will be three. I’m hopeful to have her home within two weeks. I know it’s going to be really hard to manage but I feel I’m ready now, I just hope she is too!

FDx

And then just after I posted this I get a message ‘I don’t think I’ll feel up to going to school tomorrow’ - Arghh!