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Kali

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Reply with quote  #26 
Hi Izzo

I'm so sorry your family doesn't understand that this is a mental illness and not a consequence of any sort of parenting style. It gets so tiring to have to educate people about the fact that this is a brain disorder while also dealing with the illness.

But what I really am writing to say is that I didn't see my d. for a few weeks while she was in the RTC; she and I decided that things were too tense between us. We had just come through a terrible period where there was so much tension about food and eating you know the story, I was like a pitbull trying to get her to eat and she was doing everything she could to not eat and her behavior was really scary. (blood all over the bathroom from self-harm, purging, running out the door to exercise when I wasn't looking, screaming, etc.) She said she hated me and didn't want to see me. So I took a step back and only came to the family therapy sessions that we had during that time. 

Later after she was weight restored, she had the insight to admit that in fact she wasn't mad at me but she was actually really angry at herself for being in the situation she was in.

It was actually helpful for our relationship not seeing d. for a while; we decided on the length of how long it should be and then after that period of time was over, I came and visited once a week in addition to the family session, and her dad went up once a week, so she had 3 visits a week. (she liked h. a lot during that period because he had done absolutely nothing to require her to eat at home, which was fine since at least she liked one of us[smile] Her friends also went to see her regularly. We played games and slowly as she gained weight our relationship improved. So IMHO it is fine if you step back and do not see her or get in touch with her for a period of time. I know it is hard under the circumstances, but take some time for yourself.  

Quote:
For the record incidents are still reduced and my D is eating everything except drinking the last glass of milk of the day. 


This is huge progress, Izzo!!!

best wishes

Kali




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mjkz

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Reply with quote  #27 
I'm sorry Izzo.  Just know it is not your daughter making that decision.  It still hurts like crazy.   You are a safe person to her and she knows you are not going to go away no matter what.  I have faith in this unit and also weight recovery.  You will get your daughter back!!
Izzo

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Reply with quote  #28 
Hi thank you so much for your replies - TF I will definitely not give up giving her notes just to show I'm there. I've also texted her father to ask if he would ask my D who she would like to see to give her some motivation. Sotired & Kali -perhaps a break really is what is needed - when I was looking after my D before IP I felt that we had become hopelessly entwined as she would only eat with me (my ex was not someone she could bring herself to eat with ) so perhaps this would do us both good mentally. Mjkz and TF yes thanks for your faith in my Ds unit - I have faith in it too - I wish I had more faith in my D to get herself out of this hole though - but she's eating so that's good. 

Izzo Xx


mjkz

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Reply with quote  #29 
Quote:
I wish I had more faith in my D to get herself out of this hole though


I know that feeling like something has got to sink in sometime.  I still ask myself how many times can she do the same D*MN thing and expect a different outcome?  I don't understand what drives the behaviors and I've given up trying to understand them.  I decided as long as she was in a safe place I was going to get on with life and let her join when she was ready.  Ironically it was when I made that decision and stopped trying so hard-that was when she realized it was up to her how long she was going to live in a hospital and she started getting better.  I went on vacations and went out to dinner with friends, etc. and I let her know it.  I showed her pictures of where I had been and told her how much fun it had been but I wished she was with me.  Only she had control over that but it would have been fun to have her there.  When I stopped trying so hard and backed off was when she realized she had to take over trying and get better.
Izzo

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Reply with quote  #30 
Thanks Mjkz that's a thought and something my H has been saying all along - I guess I can bang on all I want trying to motivate my D but she's got to want to get out of that hospital -and actually only she knows what really motivates her - e.g. Super polite phone call from her yesterday asking if she could dye her hair -

Unit have faith she will turn things around but obviously don't know exactly when - meanwhile I'll back off and enjoy my short trip with my S ...
Izzo

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Reply with quote  #31 
Hi there,

Just thought I would give a quick update. 

So the good news is that I got away twice - once abroad to sunnier climes (I didn't want to come back!). Followed MJKZ and Sotired's advice and told her about all of it
I've seen my D a few times and visits have been pleasant apart from at the end when she has issues with me leaving.
D is eating everything orally
D is having SOME medication orally (but not all)
Incidents are getting shorter and less intense + she has been having stints of 48 hours no incidents. 

The bad news is: - 
D hasn't been off the ward for four whole months now because of her impulsiveness/unpredictability and she continues to be on 1:1.
Ligature attempts continue - about three times per week at least. 
She has been put on soya milk due to 'so called' lactose intolerance which she seems very pleased about grrrrrrr

Her team tells me that she is progressing significantly (although not as fast as they would like), and she is talking to staff for a lot longer now. However the length of time this is taking seems so long and I feel for my D in terms of her quality of life. It's just so sad that she has to spend her teenage years like this. 

I guess at least she is safe but I bumped into her old primary teacher this morning who said that she saw a picture that reminded her of my D and remembered her as such a happy, determined, artistic little girl who she always had a soft spot for. It pained me to tell her where she is now but the teacher seemed convinced that she has the determination to get out of this so I'll keep up the hope. 

Best wishes to you all, 

Izzo xx







mjkz

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Reply with quote  #32 
Quote:
It's just so sad that she has to spend her teenage years like this.


It is sad.  It is sad that anyone has to spend any part of their lives like that. 

It sounds like she is making a lot of progress though Izzo!!!  Just 20 days ago she wouldn't see you at all and now she doesn't want you to leave. You weren't even seeing her because she couldn't make it long enough without needing to be restrained and now she is.  You are having pleasant visits with her and she is taking food all orally.  Even better is that you got away and had things to tell her about that she could be doing if she starts making better choices.  That is huge in 20 days.

I know it doesn't seem like it because it has been so long since your life with her in it has even approached normal.  Seeing the progress doesn't block out how far she still has to go but if you don't celebrate the small steps, you will never survive this journey.  It is easier for me to see the steps she has taken from afar than for you who is still suffering with her.  Keep making life outside the hospital sound like a better choice than being locked up all the time and you will get there.

I used to sit down with my daughter and ask her when she though we could do something like go for a walk together even if it was with staff.  I'd tell her how much I missed her company and then ask her when she thought we could do it.  It focused her attention on something else to work on i.e. what steps she had to take to be able to do that.  We even made maps with each step that she could see and plan how to reach each step.  It kept her focused on things outside her own head and kept her moving forward. Might be worth a try.
Foodsupport_AUS

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Reply with quote  #33 
It is heartbreaking to see that their adolescence is taken away from them. But there are definitely glimmers of hope there, it is all so slow. 
Have they offered options for trying to improve D's quality of life while unable to leave the ward? Things like pet visits, special activities that can be done under supervision that can both distract and bring small amounts of joy without risk? Are there things that she really used to love doing that can some how be brought to her?

It was around this point in my D's illness that we started planning on getting a puppy. We got one from a breeder, so D knew the puppy was coming from conception. We had two months prior to the birth and then two months after (she was in hospital the whole time) of planning and anticipation. Hours of discussion about what name etc.. My D is, was and will always be an animal lover, but she credits the anticipation and meeting of her new puppy as the thing that saved her life and gave her reason to live. Not sure if it would help your D but there may be something else that would/could work for her. 

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Sotired

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Reply with quote  #34 
Absolutely it sucks ,but your d is making small steps towards wellness and that is wonderful.just for her to be able to eat orally is great,and the fact that she is having some meds...that's good stuff right there.
A couple of things we did when d was really restricted in where she could go-at one point we couldn't leave hospital grounds-what I did was between mealtimes I asked for a wheelchair and took her for walks (yeah,I know it's really 'sits',but still)in that.i would take her to the shops inside the hospital and we would go outside for a breath of fresh air.because her life had to be so restrictive at that point she loved those walks.fresh air and a chance to see outside four walls matters.we never went for long-15-20 minutes,only increasing the time out as behaviour improved,but I think it helped.
Could you ask to do wheelchair walks?

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Izzo

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Reply with quote  #35 
Thank you for your responses. 

MJKZ - yes I am encouraged by the feedback I'm getting from the ward and your strategy that you have adopted with your D is just what the ward is doing with my daughter. The psych is giving her three goals a week because my D is desperate not to be long term in the hospital while her key nurse is helping her devise a route to a better quality of life while she is there (a plan to get her into other parts of the unit that are non-HDU and less 'safe'). It's the mood disregulation that is proving difficult to crack.  The next time I get a chance to see my D I will talk about achievable goals like going for a walk etc - but she hasn't been outside in all this time and the unit want to introduce new things very slowly and only when they feel confident in her. She told her Dr that her experience at the last unit where she tried to abscond, and ended up restrained and injected has traumatised her so she is worried about something like that happening again - so the reluctance to getting off the ward is also coming from her too. 

Foodsupport_Aus - My D gets five hours of tuition a week on the ward and some ward based activities like crafting. Her team want to motivate her to take advantage of the activities offered within the whole unit but off the HDU ward (full-time school, Netflix, crafting activities, internet access, garden, etc). Funnily enough my D asked to see her gecko last night as she was allowed it on the ward for a short time, however her gecko is pretty sick and I not very motivational for my D (!), perhaps the cat would be a better option. Would absolutely love to follow your advice and get her a puppy but I can't do it without my H being on board and he doesn't like the idea of having another thing to tie us down.  I have been motivating my D with a trip to Thailand to an elephant sanctuary but I know that this isn't a long term idea to get her home. 

sotired - Unfortunately wheelchair walks will probably be out. She probably could do with a regular walk as she is at a safe weight and would be allowed if she wasn't so impulsive.  My D is so prone to hoarding or finding anything with a potential for self-harming at the moment. 


mjkz

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Reply with quote  #36 
Quote:
She told her Dr that her experience at the last unit where she tried to abscond, and ended up restrained and injected has traumatised her so she is worried about something like that happening again - so the reluctance to getting off the ward is also coming from her too.


I can see how that would be traumatizing but on the other hand it is within her control to make sure it does not happen again. Maybe the message to work on is separating the things she does have control over out from those she doesn't.  She has no control over what the unit will do if she tries to abscond but she does have control over whether she tries to abscond.  Feelings are feelings. They won't kill you and you don't have to act on them.  She can feel like running all she wants but she can stop herself from actually doing it.  I hope the ward is working with her on that too but if she doesn't want to be there long-term, she needs to learn that she has control over her actions.

My daughter would say the same things yet do impulsive things like that too. "I don't want to be here very long" and yet she would try to cut or something like that.  I finally lost it one day and pointed out how she was only there very long because she kept doing impulsive things that I knew she could control and how what she was saying didn't match what she was doing.  It was like a light finally went on and she started really trying to control her behavior.  Before it seemed she thought she had no control over her behavior but as I pointed out, she had many years of living outside the hospital when she was fine!!  It seems so obvious for us but they don't get it sometimes.
Izzo

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Reply with quote  #37 
I have a feeling that this point has been made but no harm in asking the unit what they are doing about this. Although I have visits with my D I really see her so little that I don't have much of a chance to get a word in and although we are getting on better I am staying off the difficult subjects for now. Do want to make sure that this issue is being dealt with and when I get a chance I'll bring up this subject. 

Izzo

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Reply with quote  #38 
Wanted to say that I took your advice mjkz and said your exact words to my daughter - they seemed to register because she listened and even said Thankyou - I think you put it beautifully!

Anyway let's see - no incident on me leaving which was great -

Only questionable thing is that she is motivated to get off the unit and is cooperating with the psychs but her motivation is to be transferred to another bloody unit - arrrgh ! Why is it all so complicated ....
mjkz

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Reply with quote  #39 
Quote:
Only questionable thing is that she is motivated to get off the unit and is cooperating with the psychs but her motivation is to be transferred to another bloody unit - arrrgh ! Why is it all so complicated ....


I honestly wouldn't even go there.  I would simply nod and say "uh-huh.  I'd much rather you work on getting off the unit to come home to us."  You know she is not going to another unit and she has to in there somewhere so I'd use whatever motivation you can find.

Hope the gecko is feeling better [thumb] 
Izzo

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Reply with quote  #40 
Sadly she swallowed a bit of bleach this morning from some hair dye kit - wish my motivations and words yesterday were enough but I'm guessing she's just overwhelmed in the mornings - was in tears when I heard
Kali

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Reply with quote  #41 
Oh Izzo so sorry your daughter is going through this and sending a transatlantic virtual hug. Can you speak with the unit and make sure she doesn't have access to hair dye or anything else which is potentially dangerous, moving forward. Did they take her to the emergency room; how was it handled? Was there someone with her when this happened?

When my d. was in res. and she harmed herself and was suicidal it was taken very seriously she was on one to one observation and we were called into an emergency family meeting. She met with the psych. and therapist and they worked out a whole list of things for her to try to stem the self-harm impulses. Can you schedule a family meeting with the team if they have not already initiated one and discuss strategies to help your d. with them? I think it might have been one of the lowest moments of my life when that happened, I remember how shell shocked I felt on the trip to that meeting, but a year later d. is doing much better. 

Kali

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Izzo

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Reply with quote  #42 
Thanks Kali -they called in the onsite Dr - and fortunately she didn't eat enough to cause damage - she felt a bit sick but that was it. She obviously has some control to not go too crazy when she does things like this. I have asked that my D gets a bit more support in the mornings as this seems to be her bad time of day - it's just so frustrating.

Overall my D is on the up but I forget that this illlness has backwards steps along the journey - in fact one of the staff suggested that she might have done this as a result of all her hard work on the unit - she's close to weight restoration (92% WFH) - she's expanding her diet and she is managing longer periods of staying safe. I guess I forget how difficult it gets from time to time.

Thank you for your support as always and a big shout out of thanks again to mjkz whose advice seems to follow that of my Ds unit (which is meant to be one of the best EDUs in the country )



mjkz

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Reply with quote  #43 
Quote:
Sadly she swallowed a bit of bleach this morning from some hair dye kit - wish my motivations and words yesterday were enough but I'm guessing she's just overwhelmed in the mornings - was in tears when I heard


I knew I was going to read something like this Izzo.  For every big step forward, they often take a step back but her momentum is still moving forward.  It sounds like you handled it very well and got her support when she needs it more. Sometimes they use actions to ask for things rather than words. 

My daughter still cringes when I tell her to use her words rather than her actions to ask for things.  When she was inpatient, all I would say to her is "I'm really sad you felt the need to hurt yourself instead of asking for help.  How can you do that differently next time?"  I would remind her it is okay to ask for what she needs but it is not okay to hurt herself. 

Quote:
a big shout out of thanks again to mjkz whose advice seems to follow that of my Ds unit (which is meant to be one of the best EDUs in the country )



Always glad to help.  Our daughters are so much alike.
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