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Izzo

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Reply with quote  #51 
Hebrides, when I was told that my D had to go to a PICU/HDU I was devastated, but I was told that my D might need the extra support that these facilities offer in order for her to recover quicker. All you need is something in place to make sure that she eats and I think you might get a sense of relief that you no longer have to face conversations from units saying that your D needs a higher level of care because she has it now and things can only get better. I feel for you about the holiday but as others have said it wouldn't have been great going on holiday and your D being transferred. My heart reaches out to you. 

Izzo xx
Hebrides

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Reply with quote  #52 
Thank you all so much - I know there is always solidarity to be found here. 

K63 - it's a young people's Psychiatric Intensive Care Unit (PICU) - very high staff-patient ratio (so they can have 2-1 for all patients at once, if necessary), very secure (metal doors, airlocks etc), very restricted in terms of what's allowed on the ward etc, so opportunities for ligatures is very limited - although she's been using her hair recently, and finger nails have been pretty effective in the past.

Our visit on Saturday evening was not good - d was v withdrawn, lots of ED talk in a way we've not had for a while (not surprising after 48 hours no intake) - nurse said she had eaten "something" at lunch and they are trying to give her mealtime support but he admitted they were not used to seeing cases with such severe AN plus SH, depression, anxiety, suicidal ideation etc etc. Should try coming to the forum.... We ended up leaving after an hour as she persisted in saying no one cares, we don't care (yeah, right), everyone just wants her in hospital forever, she's fine etc etc - all the usual ED stuff. At one point she left the visitors' room and lurked by the door out of the ward, with staff trying to support her and get her either back to visit or back to ward. She wouldn't say goodbye and was eventually led back to the ward, and we left feeling pretty distraught. I'm heading back for this evening's visit on my own; who knows how she'll be with me today, but I'll take my book.


I don't mind about missing the few days' away, and you're all right - we probably would have come straight back, or not been able to enjoy it had we stayed. There will be another time. I do mind about feeling we are taking so many backwards steps atm and absolutely nothing forwards...but I guess it's early days in the new unit. I just hate d having to start over yet again, when she had such good relationships with staff in the previous place, and struggle to understand why she is so unable to stand up to her illness in any way at all, even when she knows what the consequences of her actions will be. Can't begin to imagine what it's like in her head. [bawl][bawl]

xx







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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
catbells

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Reply with quote  #53 
Hi Hebrides - just when you think life has nothing left to throw at you. Hell.
I don't have anything constructive to say except I feel your pain. Nobody can understand except another parent the nightmare this illness is.
Thank goodness we have the support of this forum and the wise words of many who have been but mainly still going through, this emotional journey to what seems like hell at times. As you say it is worse for our poor kids.
Thinking of you and if you have to read your book - I hope you can switch off for a bit.
Maybe we should start an online book club! Anything ED related is banned...
Hugs xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
Izzo

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Reply with quote  #54 
Thinking of you Hebrides. The extra support does seem to help considerably in terms of my D feeling more contained. I think your D will start to get herself back even though it will be rocky initially. Although my D seems to spend half the time in a dreadful state, the other half of the time she seems relatively calm and I think that is helped by the extra support from the staff in her unit as there are more of them around. 

Torie

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Reply with quote  #55 
Sending positive thoughts your way, Hebrides.  As SoTired says, this too shall pass.

Hang in there. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Hebrides

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Reply with quote  #56 
Hi everyone - and thanks for asking, TF. Not sure how we have got through the past couple of weeks, but we have - just. It feels like we have taken several giant steps backwards - d is only accepting ng feeds now, so nothing orally, though accepting isn't the right word as she is resisting and needing to be restrained. it sounds like the anxiety beforehand is huge and the guilt afterwards even huger. Staff are trying hard to make sure she has extra support after feeds. Apparently she is refusing to go anywhere near real food, saying she is scared that smelling it will make her gain weight... On the more positive side, both CBT and family therapists have met with her and reported she was able to talk quite openly with them. The initial planning meeting a week ago was attended by both our CAMHS psychiatrist and the wonderful psychiatrist from the previous unit (by phone), so at least there was an exchange of information and contact details - we all agreed it is important that previous work is not lost and there can be some level of continuity. The new psychiatrist said they would review d in a week and felt she may be better on the acute ward on site if the ED appears to be the most pressing need - but not heard anything since then, so need to follow up. 

We visited (or at least, tried to) last Saturday, but d was very upset after morning feed and would not come in to visiting room. She was crying in the lobby outside it, so I went out and tried to touch her (shrank away) and said "I know it is so hard for you..." at which point she shouted "you don't have a clue" and demanded to be let back on the ward... After several staff attempts to get her to the visit, we called it a day and left, both feeling pretty glum. I am setting off on a few minutes to visit this evening, so I hope at least she will see me...

As if all that wasn't enough, I was told at the beginning of the week that d had assaulted a member of staff while trying to abscond, grabbed keys, stabbed staff with them, police were informed etc etc. I was distraught....until the next day when I got another call apologising - it was another patient, not my d.... Could have done without that extra dose of stress. Thankfully we are pretty sure d is not aware of the mix up, but we are still reeling.

Must get on my way.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Izzo

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Reply with quote  #57 
Hi Hebrides, is it worth you calling first or getting the staff to find out your D's views on visits? It just might save you the pain of visiting her when she can't face you. I've just been informed that my D has told staff that she doesn't want to see me while she's struggling... (along with the unit not recommending it). I think I might represent pressure for her to be well. 

Thank god it was another patient regarding that incident - I'm still reeling from what my D did and it wasn't on that scale so can't imagine what you felt when they called you to tell you about the assault + keys and absconsion.

Regarding the feeds this is another phase along the road but it sounds like the treating team are working together and that's positive. 

It's so tough when this miserable road that they are on seems never ending. 

Big hug back
xx


Torie

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Reply with quote  #58 
Oh dang, what a week.  Sure hope your visit goes OK.  

Please remember that we're with you in spirit. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
K63

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Reply with quote  #59 
Hi Hebrides, this is so awful for you going through this right now. But nutrition is going in and with nutrition and time your d s brain will heal. It's so hard watching this and the guilt feeling is normal for them. Could you ask your d what can you do to help would she like to play a board game or paint or just sit and you read when you visit.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
mjkz

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Reply with quote  #60 
Quote:
It feels like we have taken several giant steps backwards -


Not surprising that she has gone backwards with the huge changes she has experienced in being moved, etc. but I know that doesn't make it any easier.  If you do call to see if she wants visitors, make sure the staff let her know that you are calling even if she says she doesn't want to see you.  I just wish she had been able to get it together enough to avoid being moved but hopefully she will settle in and move forward again.
Hebrides

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Reply with quote  #61 


Quote:
 I just wish she had been able to get it together enough to avoid being moved but hopefully she will settle in and move forward again.


You and me both, mjkz...

Mon night's visit wasn't a great success. It took 45 mins for them to bring her to the visiting room because when I arrived they hadn't done her feed... When she did appear, she was upset and quiet (post-feed is always rubbish, obviously), but gradually started talking, which was pretty much just a litany of moans about how staff were "messing her about", not giving support after feeds as agreed, showed me bruises on her arms and legs from being restrained (because she is resisting at feed times), they had said would do an ECG twice a week but not had one for 10 days etc etc. I listened. I suggested we had a chat with the ward manager, which we did - who said there had been discussions with the doctors and they were planning to refer d to an acute ward as they feel she could manage outside the PICU. I expressed concern that the most local generic acute ward to us had refused to take d 3 weeks ago because of the high level of risk, and I don't feel anything has changed in that period, so doubt they would take her now, and don't think it's the right place for her. I know the geography of the place and know she would be at risk of absconsion. Through this conversation, d was getting more & more agitated and the ED voice was in full flow: no one cares, I don't want to fight anorexia, I don't want to recover, home is the only place I will feel better and you don't care because you don't want me at home... Her parting shot was "my goal is to be 20kg"...That was the end of the visit.

This evening I have spoken again with the ward manager, who has reiterated the plan to refer d, but agrees the more local unit would not be appropriate. Their plan is to refer to the acute ward in the same hospital as the PICU, which is as secure as the PICU but has more expertise with EDs. There would be the advantage of continuity of therapists, and of the PICU still on site if it was needed. I'm still a little unsure of why they think d would manage there insofar as she is still tying ligatures with her hair etc and none of the risky behaviours have abated since her admission - they seem to be getting worse. I suspect they are feeling out of their depth with the severity of her ED... But I was reassured they are excluding the local unit. I vainly hoped d might find this acceptable, and the clarification would help reduce the uncertainty and anxiety a little. Staff from the acute ward are due to talk to d tomorrow.

A few minutes after this call, d rang, so I had a 45 minute rant about why had I agreed to let them refer her to the acute ward, I needed to tell them if she goes there she will be straight back to the PICU because she won't manage there, there has been no post-feed support today, despite promises there would be, staff have walked past her on the corridor when she has been tying a ligature with her hair or banging her head (that's a new one for us) and not said anything - proof that no one cares. I listened. Again. Part of me feels at the moment she needs us to listen and hear her, to be on her side, to fight her corner rather than criticise her or tell her what she needs to do differently - but how to do this without colluding with the AN is such a challenge. When I told her there is always hope, even at the darkest times, she shouted "No there isn't" and put the phone down. My real d seems intent on making herself pretty invisible at the moment. And I was so looking forward to an evening of TV and knitting!! 

I guess I can talk to the ward again in the morning...

xx



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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Izzo

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Reply with quote  #62 
Hi Hebrides, 

This uncertainty about where your D is going must be so difficult. I really don't understand why psychiatric units haven't cottoned on to the fact that one can have severe psychiatric symptoms that go along with the ED and both must be treated (well) at the same time.

I really hope your D turns a corner soon and I know how hard it is being in the same situation myself - I am so glad you expressed that about fighting her corner without colluding with the AN - I know exactly what that's like. I always get an uncomfortable feeling when I realise that I have a accidentally colluded with the illness. 

What medication is your D on ? Is she taking it? 

Thinking of you and big hugs going your way

xxx
mjkz

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Reply with quote  #63 
Heb, it sounds like things are really hard right now.  I know you feel you need to listen and support her but I wonder if you started pointing out that you have no control over what they do. The only person who can really show them what is needed is your daughter.  You would love to have her home and have her feel better but she has to do the work to get there and only she can do it.  I found that listening to ED rants only made things worse and when I started pointing out to my daughter that she and she alone had control over what happened to her, then she started feeling more empowered to try to make things happen.  At the end of the day, you can talk to the ward staff but they will do what they need to based on what they are seeing.
Hebrides

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Reply with quote  #64 
Thanks, Izzo - it does seem we are treading parallel paths at the moment... She is supposed to be on Sertraline (started about 6 weeks ago in the previous unit, after several months of total refusal of meds) - but has refused it over the past week or so. She has also been refusing Clorazepam, which the PICU put her on, so since yesterday they have been giving her Promethezine IM x2 a day (she was having it prn in previous unit). Her reason for refusal - meds make her gain weight.

You're right, mjkz. It's a fine line to tread and at the moment I feel there is precious little chance of my saying the right thing, or not saying the wrong thing.
Quote:


You would love to have her home and have her feel better but she has to do the work to get there and only she can do it. 
This is exactly what I keep saying to her, but her response is always "I can't do it, I have no control, do you think I'm not trying" and such like. There has always been an element of passivity in her illness - which may link to the BPD, and she seems to find the prospect of taking even a little bit of responsibility in the process completely out of the question.

I couldn't get hold of anyone senior enough on the ward today, so will have to wait until Monday. Older d will be home from uni tomorrow and will visit her sister with me on Sunday - I hope and pray that this weekend's visits can be better than the last week's.

Thank you all for your continued support - I dread to think what state I'd be in if not for this forum.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #65 
Quote:
There has always been an element of passivity in her illness - which may link to the BPD, and she seems to find the prospect of taking even a little bit of responsibility in the process completely out of the question


Who does have control then?  Would be interesting to ask her because she will never get out of the hospital until she starts taking some responsibility for her actions.  My daughter at first would say that and I would usually ask her who she thought made her hit her head on the wall.  Her answer was her ED and I'd simply point out that the ED is also a part of her and she can start making choices to control it.  It took awhile but after each incident, I'd sit down with her and point out where she could have made a different choice or at least asked for help from staff to help her not to get into such a precarious situation.  She hated every minute of it but pointing out to her where she could take control slowly seemed to seep into her consciousness and she started making better choices.
Izzo

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Reply with quote  #66 
Hebrides - I get similar responses from my D like "It's not as simple as you think"  etc etc. 

I do agree with what MJKZ is saying and I questioned the staff today about how they teach my D to take responsibility for her actions. They say that they are tackling this through a care plan which means my D sits with the staff and formulates a plan about how to help her when she is in distress. There has been some improvement however she is still turns to headbanging to self soothe.

At the same I do wonder if there is in an element of the way the AN brain is  wired making it less conducive to some of our Ds being unable to control these impulses.

BTW are you sure your D has BPD - I was told my D has BPD traits from the last Psyc but the current Psych refuses to diagnose her with that. Also can your D be forced to take her meds because they may help with the impulse to self-harm? 


mjkz

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Reply with quote  #67 
Izzo the more I hear about the unit your daughter is in, the more I love it.  They really are on the ball.  I had to do all of this kind of stuff on my own against staff wishes.
Izzo

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Reply with quote  #68 
Yes the unit is great - my daughter is not improving very fast - (in fact there are barely any improvements over the last two months) but they are the only unit in the UK that seem to tackle the behaviours along with the AN. It is a very small unit though with only a few beds so difficult to get places  but they probably are the best suited to a more 'challenging' presentation of an eating disorder

AUSSIEedfamily

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Reply with quote  #69 
Dear Izzo,

Your D's team sound like they have applied the same or similar process to what I am learning in the Certificate IV in Mental Health. The process they appear to be following appears in all of the Certificate IV units especially in the emotional & physical wellbeing unit. If they following the same process I am confident that they are working on the head banging. It might be that the head banging is tougher item & will need a bit more work to overcome.

In the Certificate IV course we are learning about recovery not being a straight line process with success measured in different ways for each situation/scenario and that some success are more readily acheived than others. Celebrate all success and let the small successes build capacity to reach the not so easy ones.


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Hebrides

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Reply with quote  #70 
Another week has gone by - and nothing much has changed. On the positive front, I am enjoying older d's company - she is a great support to me, although she is of course suffering from her sister's illness too... I've also managed some bits of gardening (although my back is complaining - doesn't help spending several hours in the car for each hospital visit). Our visit on Mothering Sunday evening was ok, although there was a tension and awkwardness in the air, but at least d managed to contain herself. Apparently she had a good session with the music therapist, and I had a call from staff asking us to bring her flute in.

The referral to the acute unit was declined - because d would need to be able to manage on a lower observation level than she is currently managing, she would need to be compliant with meds, and they already have their full quota for ng-fed patients at the moment. No further plans to look for a bed elsewhere, as far as I know.

Less positive was my midweek visit, made worse by feed happening immediately before it. First few minutes were dreadful and staff had to intervene - d swore at me for the first time ever (some will say I'm lucky to have got this far, but d's language (towards us, at least) has never been bad) and was very unsettled and distressed. I told her firmly I would go and sit outside for 10 mins while she calmed down and thought about whether she wanted to continue the visit - and from then on she was a little better, with the last 20 mins or so being actually quite pleasant.

She has been there a month now - and while she has been kept safe and nutrition is going in (and weight is creeping up) in other respects it feels like there are many mountains to (re)climb. She's still not having any of her diet orally, still needing restraint before feeds (3x a day), still very low and distressed after feeds. 


It is her CPA (care programme approach) meeting next Monday, so I guess that will be a good opportunity to have a talk with the team about how to get her moving forwards again. I feel somehow really impatient at the moment, and feel a need for things to be moving in the right direction rather than standing still and stagnating.

My mother has also had her dementia diagnosis confirmed this week - not a surprise, but an indicator that I will need to be giving her more support too...

Hugs to you all,

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Hebrides

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Reply with quote  #71 
Thanks, TF. I'm sure there must be plenty of us here who also have multiple caring responsibilities, especially for elderly parents as well as their ED kids. Off now to the local Carers' Resource centre (fantastic place only 20 mins away - they have been a great support with a listening ear whenever I have needed to talk to someone in person), this time with my daughter hat on. Wish I wasn't an only child though...

Hugs to you too (and impressed with your S's sanguine response to FIL's behaviour on Sunday!)

xxx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Izzo

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Reply with quote  #72 
Hi Hebrides, 
Gosh you are being pulled in so many directions - so sorry about your mother. It really does come all at once but at least your mother will now receive the right help. 

It's good that your daughter is gaining too but I'm guessing that her mood will be significantly affected. I think I wrote in a post earlier that I had a whole batch of abusive texts last week - and it probably relates to the weight that my D has gained. I'm also so glad that your D is coming back to music with the music therapist. My D sings with the music teacher there and I think it helps her a lot. I sometimes imagine that it is all bad on the ward because of what gets reported back to me but really that is not the whole story and there are some positive stories in amongst all the stress. 

I totally hear you about standing still and needing some progress. I'm guessing that there are positive changes but your D will need a bit more time on the unit to see the changes properly. I say this from having a D (I think) with a similar presentation to yours. It's slow but she'll get there.  

Big hugs 
Izzo xx 


Torie

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Reply with quote  #73 
Hebrides - Good for you to stand firm against your d's swearing!  Three cheers for the good guys!

I think you said your d's weight is creeping up.  If there has only been a little gain in this time, is there any chance you could persuade them to up the calories?  Just a thought - surely one you've already had, so ... sorry I don't have any brilliant ideas.

Thinking of you.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Hebrides

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Reply with quote  #74 
Torie - I'm not sure of the details of weight gain, but we have a CPA (review) meeting on Monday, so will certainly be asking about it. 

I spoke to the ward this afternoon and was told.... d ate lunch today (!!!!), has been less resistant before/after feeds yesterday and today, and has played her flute a couple of times for over an hour since it was added to her care plan yesterday - wow!!!  And she phoned me this evening, was pleasant, even making jokes. Isn't it bizarre - and wonderful - when there are moments like this in the middle of the darkest of places? Of course it may all be totally different when we visit tomorrow, but for now I can just about allow myself to enjoy that tiny glimmer of hope. 

Wishing tiny glimmers of hope for all of you too.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Sotired

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Reply with quote  #75 
That's lovely to hear Hebrides.at least for today you can breathe easy.so pleased to hear that the flute playing is added to your ds care plan-it's funny what can make a difference and I'm definitely in the 'whatever works' camp of life!
I hope you get another day of peace and then another...until suddenly it's been a while...
Hugs,

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