F.E.A.S.T's Around The Dinner Table forum

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Izzo
Hi all, 

I haven't posted for a bit but I've come to a time when I am starting to think my D will never recover and get out of hospital. She was able to contain her self-harm behaviours for some time in her ED unit but suddenly exploded, banging her head against the wall, creating a dent and ending up in A&E with a big bump. She was upset because her psychiatrist had reduced her risk levels yesterday and this culminated in her saying that this just wasn't right and pushed her risk levels right up again. I find it so hard to understand it ( well I do it's ED behaviour at its worst). 

I am so disheartened. She has been in inpatient now for three months and although has gained weight, her behaviours are now making her unrecognizable to me. I wish she could come home for Xmas but it is starting to look less likely. 

Has anyone else seen this happening at inpatient? 
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Hebrides
Hi Izzyd,

Yes, absolutely, and it's heartbreaking, isn't it?  Please try not to feel disheartened (that's rich, coming from me - I keep coming back here needing to be propped up by the wonderful parents here!) and keep telling yourself, and her, it will get better (as others tell me when I feel hopes for recovery are fading).

Our d is 2 months into her 2nd IP admission. Her self-harm behaviours (cutting, scratching, constant attempts to abscond, tie ligatures, refusing meds etc alongside strong suicidal ideation) mean that for the past 5 weeks she has been nursed on 1-1 observations 24 hours a day (so including showers and bathroom visits). Of course she dislikes this intensely and has been asking repeatedly to come off these enhanced obs, but the staff have 3 times now tried giving her 1 hour a day on "12 and 3" obs (= visual checks every 5 mins and at least 3 interactions per hour) and she has found it impossible to manage - each time the risky behaviours spike, and she reports feeling unsupported by staff - it's as though she needs and wants the higher level of support at the same time as not wanting it. She is highly anxious that a reduction in obs will be interpreted by others (other patients? us? staff? friends?) as signifying she is doing "too well"; conversely remaining on the higher level of obs gives a clear indication that she is definitely "not better". It feels she has a huge fear of recovery for all sorts of reasons, including the fear of a (perceived) reduction in how much people care about her, how much attention they will give her etc and that all links to how the ED has consumed her 100%, so she is lost and doesn't know who she is without it...and so on. 

We too are waiting to see if home leave at Christmas will be possible, but are not especially hopeful, and we too do not recognise our d, overwhelmed as she is by her AN. If you can, remind yourself she is still in there, that what you are seeing is pure ED, not your real d. The psychiatrist yesterday said to us that sometimes events like Christmas, birthdays etc just come at the wrong time - and we put ourselves under such pressure when it's not necessary. As well as all the anxiety around food (although I think our d would just be coming home with supplements as she's not managing any proper food) I know she is scared she will ruin Christmas for the rest of the family (presumably by engaging in self-harm which would be distressing/disruptive/might require an A&E visit), scared we will be in some way disappointed with her and so on. Of course nothing could be further from the truth, and of course if the risks of coming out of the unit are deemed too great (she has recently been talking about plans to find a bridge if she were to successfully abscond) then we will simply take Christmas to her.

So I guess trying to remain calm, compassionate, positive and hopeful, is what you (and I!) should be aiming for at this stage - and not looking too far ahead. 


Fingers crossed we can manage some of it some of the time....

Sending a virtual hug

xx
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...
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Izzo
Dear Hebrides, 

Thank you so much for your reply. I feel very fortunate that I've connected with someone whose daughter is in very much a similar place to mine. 

I'm seeing the psychiatrist tomorrow to address this very thing, that she needs a one to one therapist who can help her get over this fear of recovery and the idea that she won't get the attention she needs where she to recover. Such a hard conundrum but I hope this is something that starts to become easier to discuss once the weight comes on. 

Although my D has put on weight (through an NG) she is still 9 kgs off her target weight so I'm not sure if this is a stage at which she can discuss this. (she's currently at 43kgs with a height of 164cms)




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Izzo
Thank you Toothfairy - 

What gives Xmas extra weight is that it is my D's birthday on Xmas day (bad luck!) 

I think her behaviour is also a result of the fact that either she completes meals or she spends Xmas and her 15th birthday IP. So it's a choice between choosing to comply to get what she wants or staying with the anorexia. 

She had made a plan to get off the NG by Xmas but so far is not anywhere near completing every meal.

I've told her that noone will judge her if she aims a bit lower but again with the ED perhaps that is the wrong thing to say. 




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Izzo
Yes toothfairy, you are right. Already said the wrong thing but I won't say it again (even after what seems like forever still making mistakes!)

Yes she needs to get her weight up and praying that then there'll be a change. Issue is that she has never been more than 46kgs as our outpatient team kept her there on maintenance. 
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Izzo
Inpatient team have set her target weight at 51kgs to 52kgs. 

She'll be nervous when she goes over 46kgs but I definitely want her to keep going this time and I'll make it clear to the hospital. 

Not even sure if 51Kgs or 52kgs is enough for her given her height (165cms) 


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Izzo
Not sure whether to put a new post in but does anyone elso also dread going to the unit because you are not sure what you'll find ? I'm going tonight for a family meal and sometimes seeing my D is great but sometimes it's horrendous and I leave very depressed and hopeless (whilst desperately trying to be strong while I'm there) - 
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Colleen
It's really distressing for everyone!!  I actually didn't have that feeling of "Will I find a lady or a tiger behind the door?" when I knocked--it was ALWAYS the tiger!  But that knot is still there either way.

Your d is in a safe place--I hope.  "Safe" means that nutrition is not negotiable and that she is gaining weight and getting full nutrition, every meal, every day.

Other than that, you are doing hero's work to show up and be with her.  She will be anxious (anxious is an understatement) while she is being refed.  It's super hard for both of you.  Try to stay calm, bring distractions like movies or games or books or crafts, and keep loving her.  Easier said than done.

Big (((((hugs))))) to you.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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K63
Hi izzyd, sorry that it's s hard right now but don't give up hope with nutrition this time will pass . My d spent a Christmas in ip she was there for 3 months . I used to visit her and spent my journeys home crying . She was so sick . In the beginning she didn't want us to visit unless we brought her home. It was difficult to talk so we played board games or cards sometimes she just wanted to sit with us . I often wondered would she ever be ok. She is now in college doing the course she always wanted by no means is she recovered she needs a lot of support and it's till difficult but this time 2 years ago she was in hospital , so don't give up hope it a all we have . Take care of yourself.
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. 
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Izzo
Thank  you K62 and Colleen for your replies. Just been to the ward now. D was very positive and says she has almost completed breakfast and lunch and ate a bit more at dinner this time. However ED then came out and she headbanged and screamed till blood came out of her forehead. I went back home downhearted partly because I thought she had turned a corner. This is the vilest and cruelest illness. 
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Izzo
Yes olanzapine and lamotragin (so) - but right now lots of PRN
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Izzo
So it's last chance saloon now for my D - she has kicked three holes in the wall this week and if she carries on she will be transferred to an HDU.  Shame as apparently the anorexia is starting to shift - but these behaviours are too challenging for this EDU. 


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