Dealing with the isolation

[ForeverDevoted]

Hi all,
I have always been actively involved in my girls activities, from being on committees to coaching or team manager of my daughters sport teams.  I am a very open person and am of the belief that all us parents need to help each other out the best that we can.

I've withdrawn from all activities -  just smiling and saying I need a year off.

A very good friend of mine is going through a really tough time (her husband's cancer has returned, her daughter last year was diagnosed with type 1 diabetes and her dad had a stroke), I am there for her and she is for me (she knows) but I see all the support from the extended community that my friend receives and I can't help but thinking - my daughter is in a psychiatric hospital with a chronic lifelong illness, the girl I knew is gone.  My eldest daughter has Hashimoto's and is currently home with Glandular Fever, my youngest daughter seems to have a new ailment every week which I'm beginning to think is caused by anxiety or for attention which has probably been caused by living with my BPDD - I feel like my little family is falling apart and I can't tell anyone (except my core group).

I feel like I need to explain my actions to everyone (logically I know I don't) but I can't (my DD doesn't want anyone to know) and it makes me feel so isolated.  How has everyone else dealt with this?

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

[bec14]

Hi ForeverDevoted,

I am so sorry that things are so difficult right now. 

I have a DD22, diagnosed BPD when she was 13.  During the really bad parts, (and as I'm sure you know, I'm not sure that there aren't more of those coming), I felt that same isolation.  I think these boards may help, I just starting posting here, and it would have been a huge relief to find this when my DD was younger.  I think it's good that you have a "core group" and I hope that you are able to talk with them openly and honestly.  Could you get out with them occasionally? Maybe have a meal or do something fun?  Those times I was able to get out with my friends, my core group,  who knew what was going on was, and still is, a sanity saver for me.  And it allows you to still have a foot into the world. 

Truthfully, you don't need to explain your absence to those outside your circle if you don't want to.   Your priority is your familiy and you.  If it helps, during DD's teenage years, I told people that I was dealing with some family health issues.  Most people didn't press, but if they did, I continued to keep it vague. These days, both DD and I are very open about her diagnosis, and freely talk about it.   

If it's possible, please don't isolate yourself too much though.  It's easy to forget to take care of yourself when you are taking care of others.  Reach out to your core group, reach out here.  Please try to find some time, however small, to do something that you like, whatever that is. I know this is hard, but like you said, parents have to help each other out the best we can, and now its time for all of us to help you.   

bec

 

[ForeverDevoted]

Thanks Bec for your response,
You’re right I shouldn’t need to explain.  I’d rather we were open and honest but I have to respect my daughters wishes.
I’m just not very good at vague but I’ll give it a go 

[ForeverDevoted]

Also I think saying ‘due to family issues’ is good as there’s no need to explain further and it doesn’t go against my daughters wishes.
I suppose I’m just finding it more difficult at the moment because she’s in hospital and probably will be until Christmas.

[wendydarling]

Hi ForeverDevoted

I'm sorry you're feeling isolated, that's a lot on your plate and your good friend too   I can understand you standing back from your voluntary work for a breather, I did two years after dx.  yes perhaps your daughter being in hospital may also add to how you're feeling and missing her. In time as your daughter matures, has a better understanding she may feel able to be open with others, like bec14's daughter, my DD too.

How long has your DD been in hospital, you did mention it as a possibility a while ago, how's it going? How old are your other girls?

You asked me how to quote  , try this
Hit reply
Copy, highlight text
Hit the quote icon above emojis (not the Excerpt button)
Paste text in centre of quote - quote, - quote name.

WDx

[ForeverDevoted]

Hi WD,

How long has your DD been in hospital, you did mention it as a possibility a while ago, how's it going? How old are your other girls?

Yay! It worked, thanks for getting back to me (I thought you’d abandoned me for a while there  ).
As for your question - my DD has been in hospital for 3 weeks now and my other girls are 13 & 17.

The house is so much calmer and it’s given us time to reflect. I can now see how much affect my BPDD had on my other daughter’s - they have been cast into her shadow most or all of their lives.  
They are now coming out of their bedrooms and engaging with us without being interrupted, my eldest and I have been shopping without my BPDD making it all about her etc etc.
It appears my other daughters don’t miss her at all and I’m not sure how I feel about that.

I think it wouldn’t be so difficult for me if my BPDD wasn’t pushing us away, I’ve been idolised by her most of her life but now she looks at me with such hatred (unless she wants something). I’m confident we can turn this around as she’s still so young and I think she’s just trying to work out how to get some independence but it’s just so difficult as I’m sure you know.

Thanks for listening x

[wendydarling]

Yay,   there's no stopping you now   

I have the one adult child, parents do talk about here about siblings being cast in the shadow, it's important we remember the skills and lessons learnt here benefit us, the whole family and wider. Do your girls share how they feel about their sister's disorder and how it affects them, wondering if they feel isolated too, if their friends ask after their sisters.

Hang in there   it sure does hurt and it's is hard not to take it personally the pushing away, black thunder looks of hatred. In my situation my DD was saying give me 'the space' I need to get better, work this out, just be there, I’ll come to you when I need support.  It's a really hard one to work out where they are. I knew my DD was aware her behaviour was hurting me (her too), the best thing I could do was not provoke the behaviours and give her a wide berth she asked for, which generally was reduced engagement. It worked for us. What I have just described is when DD was very ill. You speak of independence, my DD wanted independence to get well, she has her independence as an adult.  Where your daughter is likely stepping out for two states of independence, one teenage independence and the second, independence to get well? Does that make any sense to you? Just my thoughts.

It’s heartening to hear you think she’ll work this out. It's key they believe we know they can. How’s she doing 3 weeks in?

Do you have any local support groups?

WDx

[ForeverDevoted]

Hi WD,
Thanks so much for your response.  I'll get my new quotebox skills together and answer some of your questions:

Do your girls share how they feel about their sister's disorder and how it affects them, wondering if they feel isolated too, if their friends ask after their sisters.

My eldest daughter has always been very quiet, keeping things to herself and not putting herself out there (probably because she's never had a chance).  If I attempt to talk to her about my BPDD she just has a deadpan look on her face and I feel like she's thinking ' great - she's not even here and she's still monopolizing all mum's attention' so I've stopped trying to talk to her about it and just loving the time we have together.
My youngest doesn't know the extent of the illness but we do talk frequently and I can see she's hurting.  I've also recommended she see the counselor at school but she won't go. 
I would say they both feel very isolated. 

it sure does hurt and it's is hard not to take it personally the pushing away

This is fairly much what the psychiatrist said last night - don't take it personally.

In my situation my DD was saying give me 'the space' I need to get better,

My daughter has also said this.

Where your daughter is likely stepping out for two states of independence, one teenage independence and the second, independence to get well? Does that make any sense to you?

Absolutely makes sense!

How’s she doing 3 weeks in?

We saw the psychiatrist last night, he said she is a very sick girl but he thinks she has made some progress while there so thinks it's worth her being there.  Originally he said she'd need up to 4 weeks, she's been there 4 weeks today, they close the adolescent ward on 21st Dec and re open 2nd Jan - he's worried how she's going to cope with that.  It looks like she'll be re-admitted in Jan and he even mentioned possibly missing a lot of school next and possibly having to repeat

Do you have any local support groups?

We have a parent group each week at the hospital.
I'm not coping very well so think I'll book a psychologist for myself.

Thanks for listening, I feel so much better by just writing it down x

[wendydarling]

Hi FD

Awesome quoting FD      

You know what, and I can hear you know, we have to step out from our isolation to help us all. Your wider community support group are not there right now as you are respecting your DD's wishes, you are standing back from the girls activities to self care.   That does not mean you, your H and your girls can't help yourselves and that starts with you leading the way, seek out a BPD specialist to help you work through, and shine the light for you and your family and your core group of friends, your network. Your DD will catch up when she's ready.

Yikes, I may have overstepped your mark, have I?

I'm routing for your lovely DD, it can be a hard fight to be well and it's important we recognise this, how hard they work and also how long it may take. Small steps.

FD my DD was very unwell too, she was unrecognisable, she's made it. Hang in there. We've got you.

Love, care and patience.

Hope.

WDx

[ForeverDevoted]

Thanks WD, you've not over stepped the mark at all - actually it's just what I needed.

So glad to hear your DD has made it through.

Hope, love and care & patience 

[wendydarling]

I'm glad I did not overstep the mark 

Have a read through Lesson 6 I thought of you when I saw the last link at the bottom of the lesson Coping Skills for Parents when their child is inpatient  

How are you feeling today, do you have plans for the weekend?

WDx

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

[ForeverDevoted]

Thanks WD,
I’m sure I did read Lesson 6 as I’ve read it all but I’ll re read it again as I’ll relate to it better at the moment.

Hmm, how am I feeling today? Exhausted, sad, lost, powerless... .so many emotions. 

My DD was supposed to come home last night for our weekly family dinner with the in laws but I got a text in the arvo saying she didn’t want to come and to just say she’s with friends.
I tried to phone her but she won’t talk to me on the phone, just wanting texts.
 So basically I text saying I’m sorry she’s having a difficult time, we love her and are here to help and wondering if somehow she blames us or feels we’ve failed her as she’s pushing us away. 
Well of course she came back with ‘why are you making this about you - get help mum’.
Then later that night while at the in laws (I didn’t have my phone with me) she texts saying ‘I don’t want your help don’t you get it’
15 mins later she asked for me to deliver Uber Eats to her.
Then she text ‘sorry if you were hurt by me not feeling good enough to come’ and ‘? Can you reply’.
I text when I got home that I didnt have my phone with me and that we had agreed to get Uber Eats for her once only on a weekend (she had it Saturday night).

What I don’t understand is: if she has abandonment issues, why is she pushing us away so much? I’m worried that she’s getting too comfortable where she is and coming home will be more difficult. I feel like we are losing any form of control that we had before and I’m sad to say I’m not looking forward to her coming home.

Today I’m going to allow myself a break from all things BPD  and I’m taking my other daughters strawberry picking and out for lunch as it’s the first day of school holidays over here in Aus and the sun is shining so it’s a perfect opportunity to connect with the others and clear my mind!

[wendydarling]

Yay, non BPD day,   that sounds so inviting strawberry picking.

It is confusing.

I've come to accept, understand my DD's 'limits'. Take yesterday evening, we had a meeting to attend to vote in some new rules for a charity we are members of. At the weekend she said she'd come. Last night shortly before the meeting I received this text 'Hey Mum, I'm not going to come tonight. I nearly got an uber cause I didn't want to disappoint you but really feel like I look unwell and don't' want to have the extra anxiety of being around a lot of people in a meeting setting. Hope you understand, Love you xx'  Here my DD is using her DBT skills and communicating how she's feeling and using her coping skills. I was able to validate her 'Yes I completely understand how you feel, good wisemind decision, you taking care of you 'name' …...

Do you think this is it?

Then she text ‘sorry if you were hurt by me not feeling good enough to come’

. It is hard not to take it personally, it feels like your DD is pushing you away, when she may be looking after herself though not clearly communicating how she's feeling to you. Her first text said 'didn't want to come' and followed up with 'not feeling good enough' are two completely different things. 

When is your DD coming home?

WDx

[ForeverDevoted]

I've come to accept, understand my DD's 'limits'

That's great!  It sounds like you have worked really hard to get there and are now reaping the benefits - this is where I would like to be and I am willing to work for it but it is just so difficult when she won't even talk to me.

Do you think this is it?
Excerpt
Then she text ‘sorry if you were hurt by me not feeling good enough to come’

I wish it was but personally I think she was manipulating me (whether knowingly or not) to buy her food, she texts nicely to me only when she is asking for something.

When is your DD coming home?

The adolescent ward shuts on 21st Dec and re opens 2nd Jan, we have been told that if someone is not well enough they can go to a public hospital in the interim.  We see the psych tomorrow to discuss, I'm hoping to have her home for Christmas - I'll let you know the outcome x

[wendydarling]

It sounds like you have worked really hard to get there and are now reaping the benefits - this is where I would like to be and I am willing to work for it but it is just so difficult when she won't even talk to me.

This is where we can look at our unique situation, yes there are many similarities. At 15 my DD was not an inpatient, she was dx at 26 ~ crisis, ER …... .now 30. At 15 she was using unhealthy coping mechanisms and focused on keeping up with her peers, achieving, living a life she could not sustain. So for her at 26 it's back to basics, very slowly rebuilding her life, being realistic, self care. We practice find our way using the lessons, tools here to connect with our children, first step, you'll get there FD as you keep learning, in your own time that works for both of you. It hurts deeply right now your DD is in hospital, I get that, I've the badge.

I wish it was but personally I think she was manipulating me (whether knowingly or not) to buy her food, she texts nicely to me only when she is asking for something.

You'd set a limit a food treat one a week and this was an additional request, you can lovingly say no, our agreement is... if you'd like to bring next week's food treat forward you can do that. That helps her make choices, decisions, feel the control of what you have entitled her to?

What skills are you familiar with from the tools and lessons here? When I first arrived here Listening with Empathy and Validation jumped out. I like to think I'm an empathic soul, I learnt listening with empathy with my DD takes more than my everyday engagement with folks, stepping into DD shoes. Validation, again, my DD's been through DBT, one day she came home and shared she needed double validation from me and everyone.    So challenge on FD, your girl is a teen, remember your DD is doing her best, you are too. That's where you are, things change, they do get better. My biggest challenge was understanding what BPD means for my DD, yep there were years she did not talk to me openly about her struggles, they'll be many parents nodding. In time they do when we use the skills we learn here.

Your DD sounds like an independent soul?

Home for Christmas?

WDx

[ForeverDevoted]

Just an update with the psych: He believes she is too sick to come home for Christmas, she cut last night and had a psychotic episode. He believes she is too much of a risk to herself.
She will either move to the adult section (which is not recommended as they’ve had problems in the past with the adult male patients) or a public hospital in which they will take her by ambulance.

She must be so terrified, my heart is breaking.

[wendydarling]

I'm so very sorry FD   How's she been doing up till now, in the hospital?

[Harri]

Hi.  I am so sorry to hear this news.

How are you doing?

[ForeverDevoted]

As I haven’t had much contact, I didn’t know how she was going. She had asked the Dr not to telll me but he said it got to a stage that he had to tell.  She has been having psychotic episodes visually and auditory every day and is very sick which is why he doesn’t want her to come out.  This Dr is not as forthcoming with the diagnosis, he says there does appear to be BPD traits but he’s worried there’s something else as well. I think he’s a little perplexed to be honest.
How am I going? The best that you’d expect under these circumstances I suppose. I have an amazing husband and we are doing the best we can under these  circumstances.
Thanks x

[wendydarling]

She has been having psychotic episodes visually and auditory every day and is very sick which is why he doesn’t want her to come out.

Back in 2016 DD had psychotic episodes, I know where you are   I'm glad the Dr told you what's happening, is it normal where you are to withhold information for a 15yrold? Did they say how long she's been having the episodes, have they shared the treatment plan FD? My DD's on antipsychotic meds.

[ForeverDevoted]

I'm glad the Dr told you what's happening, is it normal where you are to withhold information for a 15yrold?

This Dr is a bit of a funny one, at our first appointment he said he doesn't diagnose adolescents and when I mentioned my DD doesn't want me to know what's happening he said ' Yeah, I don't work that way' which I was happy about as I want to know what's going on.  He very quickly realized that if he was to have a connection with her then he would need to comply to her requests.  He has said that it's best if I don't inform her I know and I can see it is very difficult for him to work this way.  He seems very committed to helping her though so I'm thankful for that and I'm just hoping he's really good at his job!  My DD is now 16.

Did they say how long she's been having the episodes, have they shared the treatment plan FD?

She's been having them daily since she's been in hospital, I know she had a couple of psychotic episodes prior to going to hospital but they were almost a year ago (not that she would tell me anyway).
Since being in hospital he has had her on anti-psychotic, anti-depressant and mood stabilizing medications.

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

[wendydarling]

ForeverDevoted

Hugs to you.   My DD's on the same meds, in time they got the psychosis under control, hang in there, I know it ain't easy. 

This Dr is a bit of a funny one, at our first appointment he said he doesn't diagnose adolescents and when I mentioned my DD doesn't want me to know what's happening he said ' Yeah, I don't work that way' which I was happy about as I want to know what's going on.  He very quickly realized that if he was to have a connection with her then he would need to comply to her requests.  He has said that it's best if I don't inform her I know and I can see it is very difficult for him to work this way.

Yes, it sounds like he's finding his way and yes his connection, building trust with your DD is fundamental and with the holidays there was no way he could not share with you, and going forwards.  My DD's psychiatrist has been very cautious to diagnose on top of BPD, depression, anxiety…... and in hindsight I'm glad, it's complex, it takes time, what I learnt is no diagnosis does not mean they are not making progress.

That you see the Dr is committed says everything, can you call him for an update. I never met my DD's Psychiatrist/DBT Team, I was totally reliant on what my DD shared with me which I respect though it can become a bit of a puzzle. I followed her cues and listened, just be. She did not have the capacity, capability to think outside herself, her own needs, way too much happening. All she needed from me was to know I was there.

Have you spoken with your DD?

WDx

[ForeverDevoted]

Hi WD,
Wow how much can change in a week!
The public system weren’t keen on having my DD and the Dr found a private hospital about 1.5 hours away that had a spare bed but my DD didn’t want to go. In the week before her current hospital closed the Dr monitored her closely and said she had improved, he wasn’t happy about sending her home though and had left me with a list of crisis numbers, pre warned the public emergency department and booked an appointment for us to see him on the 27th (in his holidays) to reassess how things are going.
So how are things going?... .absolutely fine!
The Dr had me so panicked when I picked her up, she was short and nasty for the first five minutes and then something changed, we had a good conversation about her time in hospital. She’s been home 3 days now and we are open and honest about what’s happening to her and generally getting along really well, she hasn’t been sleeping the best but she hasn’t had any psychotic episodes (actually I don’t think she’s had one since the Dr said she couldn’t come home).  She’s even given me a cuddle and told me she loves me! I’ve become her favourite person again and it’s so confusing but I’ll take it while I can and it looks like we’ll all enjoy Christmas now.
Wishing you and your family a wonderful Christmas Day x

[Only Human]

Hello ForeverDevoted,

I'm wondering how things are going?

~ OH

[Only Human]

I see you've posted while I was typing 

I'm so happy to hear she's home for christmas and that she's doing well

Thanks for updating us and I look forward to hearing more from you.

~ OH

[Harri]

Hi!  I am celebrating your good news with you!

[wendydarling]

Hey FD what a wonderful Christmas present,   I'm so happy for you and your family. Your Dr sounds ace, going the extra mile to make sure all in place.

How's it going?