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Foodsupport_AUS

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Reply with quote  #26 
I think Torie's idea is a great one. What incentives can be put in place to help her start to eat more again, and if not when will she get supplementary feeding, either drink or NG tube? It sounds like this has gone on for a more than a week, a panic attack about one meal should not guide what happens next and it seems as though there is no plan B. 

It does sound like a foolish plan for treating ED to have random buffets where there is no clear plan for managing the meals, and on a weekend? Someone makes these plans. 



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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
mjkz

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Reply with quote  #27 
Wow.  Talk about poor planning.  I agree with Torie.  So she had a panic attack.  She has proven she can eat and needs to step things up.  I would see if the rabbit can go with you tomorrow.  Let her know and tell her the bunny will visit if she finishes meals and snacks.  Go as late in the day as you can and if she is able to what she needs too, take the bunny.  If not, spend the time planning with her how she can meet the goals so the bunny can visit.
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Reply with quote  #28 
How did things go Heb?
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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Hebrides

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Reply with quote  #29 
Well... it wasn't possible to take the rabbit as d would need to be compliant with taking her meds, which she hasn't been since the buffet incident. We had a nice time playing games and chatting, though every time i tried to steer conversation in the direction of anything else it was swiftly closed down.

Hospital then called me on Friday evening to say they had decided to start refeeding via ng starting Saturday. H and I were on our way to sing/play in a concert, so weren't able to speak to d but ward said she had been very distressed on hearing the plan, and has continued to be so since - no surprises there. Reports are that this continued all yesterday and today, including ligatures, headbanging and lashing out at staff physically and verbally....not a d I recognise and it is heartbreaking to hear about this behaviour. I arranged to visit this evening but as I arrived the ward called to say she didn't want to see me (because she didn't want me to see her in such a state). I waited a while, spoke with staff, sent back the message that I wanted to see her regardless, and agreed not to "ask any questions" and just play games, with a member of staff in the room for support. I had taken a couple of photo albums of pre-AN family holidays and she was able to look through them and share memories, even with the occasional smile. We played a game then chatted about pets, her sister, granny (whom I had visited this morning and managed to have another (not serious) fall...) etc. I left her with a card for after I'd gone and am now home and utterly drained and exhausted - my head knows recovery is always possible, but my heart says I'm losing hope when she is so bent on self-destruction. 

Must get some sleep - maybe I'll feel less gloomy in the daylight!

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...
deenl

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Reply with quote  #30 
My heart goes out to you but I think you handled the situation with great strength and love. You succeeded in creating an island of positivity in what was otherwise a sad day for your daughter.

Lots of respect, a big cyber hug and warm wishes,

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Hebrides

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Reply with quote  #31 
Dear Deenl, thank you so much for your kind words, they means a lot to me. At the moment I find myself questioning everything in my relationship with d; what I say, what I don't say, what I do or don't do - there seems to be a thick layer of those proverbial eggshells everywhere I look.... I can only guess at the torment d is experiencing, but at the moment we are all suffering and I am really struggling to hold things together. 

Thank you

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...
melstevUK

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Reply with quote  #32 
Hebrides,

I am sorry for everything you and your family are going through.  

Keep in mind that if weight is still going on - that means that the treatment is successful, even if it feels in a very limited way at the moment.

Part of the problem is that the team and set up your d is under do not sound to be under the direction of someone who is competent and confident in dealing with complex cases of eds with other comorbids and extreme behaviours.  I know very little about transition and best practice from moving from ng feeding to independent eating, but given the length of time that your d has been dependent on an ng tube, I imagine it would need quite a lengthy transition period.  Clearly the buffet was disastrous - and an example of those treating your d not really understanding how this would cause major panic for an anorexic patient.  However, there is no point in blaming - it is ultimately about trying to keep things moving forward.   In terms of your own relationship with d - she knows you love her underneath, whatever behaviours she may present.  I would fear less about treading on eggshells and just doing what you yourself feel comfortable with.  If d gets upset by anything, the staff will have to deal with it.

I know that there is already a lot of demand from patients within its own health authority but it would be worth trying to get your d transferred to the Eden Unit in Aberdeen which is led by Dr Jane Morris.  She is highly thought of and very experienced in the eating disorder world and the ward was originally set up for SEED patients (severe and enduring eating disorders).  However, that label does not necessarily mean that they only take older patients, I am pretty sure they take young patients as well.  The fact that your d is now 18 would make her eligble.  The ward is used to dealing with complex cases and your d would be well looked after, even if she would be a long way from home.  You might not be able to get her in straight away, but it would be worth making enquiries about bed availability.  I cannot think of a better place in Scotland for her.

The ward also has a huge therapeutic input, with excellent input from occupational health.

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toothfairy

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Reply with quote  #33 
Hi Heb,
Oh My, well you stood your ground and did what you could. I am so sorry to read this. I hope that somebody with better experience can help. As Mel sugguested, if she cannot get a bed in Eden unit ...then even if they consulted with Dr Jane Morris???? Would that help?

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
melstevUK

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Reply with quote  #34 
Hebrides,

I have just seen a report that indicates that the Eden unit accepts referrals from the Western Isles and Orkney.  Don't be put off by the distance.  It is more important that your d gets the right level of care by a team that knows what it is doing.  I wouldn't hesitate to ask for my d to be sent there, if I was in your position.

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Torie

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Reply with quote  #35 
I'm so sorry, Hebrides.  

Under the circumstances, I think it's amazing that you managed to have such a positive visit.  Kudos to you!

Whose rule is it about needing to take meds to see the rabbit?  Is it possible she could earn, say, 5 minutes with the rabbit for every meal / snack she eats and 10 minutes every time she takes the meds?  "Oh, I'm really sorry but the rabbit has to leave now unless you take your meds" might be powerful?

Thinking of you. xx

-Torie

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tina72

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Reply with quote  #36 
Hi Hebrides,
so sorry about what you experience right now but you did a great job. You showed her that you are there for her and you tried to do something nice with her. That is the only thing you could do at the moment. I know it is hard to feel so helpless but don´t give up hope. Maybe she needed this ng tube to see that there is no way not to eat and that might give you a bit of release. I hope she will gain weight through that to get better. It is so hard when they fight so hard and are so mean and say so horrible things. Remember that is not your charming and beloving daughter. She is still hidden inside and you will see her again. It is ED that doesn´t want to see you. Your daughter loves you and she wants to see you. I think she was inside happy that you said you want to see her anyway.
My d is now WR for nearly 4 months and today we are one team just like before ED. She even doesn´t really remember what she said and did in the dark times but she is still carrying a big pack of guilt around. She often says that she is grateful that we did´t give up and that we stood with her no matter what happened. We reply that this is our job as parents and that we did that with love.
Love is the only thing you could give her at the moment and that is something she cannot get from ED. ED is always telling her that she is bad and ugly and not worth anything. You can try to give her another feeling. So even if you feel helpless, you are not. You can do something. And if its just giving some distraction for a while or giving a hug. ED cannot do this.
It is a horrible journey for us all. But now I see that there is light at the end of the tunnel and it was worth every day of fighting. Don´t give up. You must be her rock. If she sees that you give up there will not be any hope left for her. You are her mirror. Fake it until you make it. You are doing a great job.
Send you a hug from Germany,
Tina72
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Reply with quote  #37 
Hebrides, 

You are an amazing mum and I feel your helplessness. This has gone on so long for you (it's been for me too and I often think about you) but your D is in treatment and try to see it as investment time. There is an end to it  but it seems as though a new team might provide the help that your D needs. It doesn't seem as though that unit knows how to get patients off the NG but there are units that do know how and it should be done with baby steps rather than giant leaps. 

Big hugs go out to you - your D will get there - it takes patience - but get her in the right place. 

Izzo 


Hebrides

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Reply with quote  #38 
Thank you Melstev, TF, Torie, Tina and Izzo - wonderfully supportive as always. I visited again this afternoon and D was in a bright mood - if that was all you saw of her, you would never guess at her struggles.... 

Things have continued to be very difficult on the ward - kicking staff while in restraint for feeds (one needed a trip to A&E yesterday), threatening to assault them when they would not let her continue tying her hair round her neck. It seems at these times she is completely out of control - but later is overwhelmed with guilt and remorse and is able to apologise and say she does not want to behave like this. Both Monday and Tuesday she spent time in seclusion - for the safety of staff and other patients.

I discovered after the visit from the ward manager there have been a couple of new patients arrive over recent days and apparently one has been laying in to D verbally (including rude comments about her beautiful red hair). Another has been asking staff why D is there since she is 18.... D didn't mention any of this to me. Today one of the girls who has been a good support to D during her time there was transferred to another unit - D will miss her, especially if there is hostility from others. Ugh.

Melstev - despite my username and thumbnail, we are in Yorkshire not Scotland, just spend our holidays on the West coast and islands! I'm sure the Eden unit wouldn't take patients from this far away, sadly. 

Torie - I have spoken today with the family therapist and she is keen to try to replicate using the rabbit (what would we do without him?!) as motivation and will talk to the team.

Izzo - I often think of you and your D too as we have often been at similar stages on this most awful of journeys. It sounds like she has taken amazing steps forward, even though it's still so very hard. It is often frustrating that D's unit (PICU) does not have the specialist ED knowledge, though they do have input from the dietician from the ED unit on site (not sure how much I rate her skills given the buffet fiasco last week). We have the next CPA meeting this Friday - and no doubt discussions will continue about the lack of suitable beds for D. We are told NHS England and our CAMHS team have escalated the case to the highest level, whatever that means in practice. I worry that the increasing pressure to find a bed soon might lead those making the decisions to accept a bed that is not necessarily the most appropriate - it definitely feels we as parents have little say in where she goes other than keeping saying we want her to be somewhere which can treat her AN and BPD and manage the significant risks of her SH -  and not just another "holding bay". Our D and our family have been living this half life for so long now, and we at least are desperate for something to shift. D said today (not to me) that no one can help her. We know that isn't true, but we really really would like to find someone/somewhere with this next move that can.

Sending hugs to all of you,

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...
melstevUK

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Reply with quote  #39 
Hebrides, 

Sorry!  I just had it in my head you actually lived in the Hebrides!!  I have looked online for faciities in Yorkshire (my birthplace although I live in Scotland now) - could d be referred to Riverdale Grange in Sheffield?  This looks as if it would be the ideal place for her.  Have you considered it?

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Hebrides

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Reply with quote  #40 
Wish we did live in the Hebrides....!! D did spend 7 months at Riverdale (on the adolescent side) in 2015 (and managed to abscond several times); the adult side is separate but unless things have changed the door is open so would be even less secure than the adolescent unit [frown] . D was also transferred from there to the CAMHS acute unit in Leeds as Riverdale were struggling to help with her severe depression. Since then the risky behaviour has escalated (ligatures etc) so I doubt they would consider a referral. It's true, I haven't looked at it this time round so maybe I should at least check their website...

Thanks for looking on our behalf though, Mel - very kind of you.

The place which on paper seems to offer what D needs is the new hopsital at Cygnet Coventry. Their website states:

"Opening in May 2017, Ariel Ward will be Cygnet Hospital Coventry’s specialist inpatient personality disorder service. It will provide a service for women aged over 18 and will offer a range of therapeutic interventions including Dialectical Behavioural Therapy (DBT) and Schema Focused Therapy.

Ariel Ward will also offer a highly specialised service for individuals with co-morbid disordered eating. Women with this dual diagnosis category can often be hard to place and treat as many existing services across the country either focus on the personality disorder or the eating disorder.

Both aspects will be treated simultaneously at Cygnet Hospital Coventry, with the appropriate specialist therapeutic input provided. This will include the ability to undertake naso-gastric or peg feeding, if required."

As I understand it, a referral went to them but they have a 6-12 month waiting list. I will raise it again at tomorrow's CPA.

Trying not to have unrealistic expectations of the meeting....

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...
melstevUK

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Reply with quote  #41 
Hebrides,

I think it would be worth phoning Riverdale, explaining the situation, and ask if the adult service feels competent to take her.  DBT is certainly one of the therapies of choice for patients described as being BPD so i can see why you think Cygnet would be the best place.  At the same time, if there has recently been new management, that can make a big difference to a place. When my d first went into Huntercombe in Edinburgh, her care was good but a year later with a new psychiatrist who had been at the Maudsley, they had her eating right away and the regime for new patients was totally different (and much improved).  So definitely give them a ring because there could have been huge changes if they have a new lead psychiatrist.

On that topic, I would not trust the phrase 'emerging borderline personality disorder' -  it is an easy label to use for clinicians who are finding a patient hard to treat and actually puts the 'blame' on the patient rather the onus on clinicians to find up to date approaches to start making inroads.  There are a substantial number of eating disorder patients who display these behaviours and a lot of it comes down to the kind of society we live in now.  It is much harder for young people to learn to self-regulate because society has made it easier for them to do things than when people like me (now 61) were growing up.  There were so many restrictions to activities on all levels - no 24 hour TV so no access to viewing at all hours of the night.  The 24 hour drinking law has allowed young people do be drink at home then go out at eleven and stay out until four because clubs are open all through the week until the early hours.  They have more money, or easy credit, so they have easier access to both alcohol and drugs.  Facebook and phones again allow for 24 hour non stop interaction with a screen and none of these possibilities are good for mental health and make self-regulation much much harder.  There was no publicity about self-harm when I was growing up - did it exist?  I have no idea.  Would the idea come to young people unless they had heard about it already?  Again I have no idea.  What your d will need to learn is to try and keep her emotions more in check and to stop choosing suffering.  She is not choosing to be ill, but if you have a talk about how these behaviours are really not helping the situation and that if she tries to stay calm and speak to someone about her anguish, she will start to feel better in time.  You have to 'drip-drip' with these messages for a long time.  If you do not judge her, but offer an explanation as to why she needs to stop all the self-destructive behaviours because ultimately they are not working, it might help. 

I don't understand why the hospital did not use the MHA as a deterrent for d's absconding, showing her that the law was being used to keep her safe.

Another thing I don't understand is why, when d is displaying these extreme behaviours, she cannot be sedated.   I recently came across a paper - can't remember where I read it unfortunately - about best practice of eating disorder treatment and eating disorder treatment wards, and sedation was mentioned on that list as an intervention to be used if required.  

Also, personally I would not use the rabbit as motivation for eating - because the ward staff should be imposing this and finding ways to obtain d's cooperation.  The rabbit could be taken in to lighten d's day and provide some happiness and 'normalisation' of the idea of doing nice things.  Also, I seem to remember that she brightened up when a friend went to visit.  Can you organise more visits from friends so that she is seeing someone at least every week?  Doing whatever you can to bring 'normal' and pleasant activities into her day will be reminders of what she is missing.  Enjoyment has to start featuring as much as any kind of therapy.  I assume they have jigsaws on the ward.  These are used extensively in specialist settings because they allow the patient to be absorbed by an activity outside themselves.  Would she consider doing one?

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melstevUK

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Reply with quote  #42 
I have just been on the Riverdale Grange website and there is no mention of a psychiatrist anywhere on the team.  This is extraordinary.  I cannot believe they can call themselves a specialist eating disorders hospital without having a psychiatrist.  If there is a psychiatrist - why does he/she not be visible as part of the team?  If there is no psychiatrist, I can see why they did not do well with d's care.  

It would be worth phoning up and finding out if there is one - and giving them stick for setting themselves up as experts without one if there isn't!

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ssuk

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Reply with quote  #43 
Have you looked at the retreat in York? They have a personality disorder unit and eating disorder unit with very good success rates for complex clients.
Hebrides

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Reply with quote  #44 
Here I am again - after what feels like an eternity. I'm sorry I didn't post more back in October - it all just got a bit much. In some respects not much has changed - D is still in the adolescent PICU ward in Manchester, despite being now 18+ 3 months. There have been countless plans for a move - but nothing has come of them, despite the best efforts of our home team and NHS England's regional ED director. D has had 2 face-to-face assessments in the last couple of weeks from ED units (still waiting for their feedback...) but neither has a bed available (the first one is likely to be this time next year...[frown]) In the meantime D continues to struggle, feels nowhere wants her and she no longer belongs on her current ward.

However, my contact with our MP seems to be paying off. With his support our case has been escalated to the shadow minister for mental health, who has written to the Health Secretary requesting an urgent response. That was 3 weeks ago.... Apparently his office says we will have a reply by 14 December. Not exactly a swift response! Now that the shadow minister's office has taken up our cause, it does at least feel as though the responsibility for finding a solution is not ours alone, and that they will help keep up the pressure until somebody, somewhere, makes something happen. It all feels totally surreal....

Melstev and ssuk  - so sorry I didn't reply properly - thanks so much for your suggestions and support. I too have had good reports on the Retreat in York and it was in theory an option in the summer, but had to be discounted because they require patients to have motivation for recovery, they don't take people on a section (D is on section 3 still) and aren't secure. It remains an option for a future stage. I did look at Riverdale again but they no longer take patients on a section (although they did when d was there before). They do have a psychiatrist (don't know why that's not clear on the website!). D's current hospital do use sedation when needed. And yes, D does do jigsaws! One positive - she has started reading again after nearly a year of not. Can't help feeling a little surge of hope knowing that in a small way,reading will transport her into a different world for a time...

Will start a new thread about contacting with the media - which the shadow minister's office is keen for us to consider.

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...
tina72

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Reply with quote  #45 
Hi hebrides,
thanks for that update. We were all thinking at you and how you are doing.
It is good that she is still safe there and I hope you will get a positive answer at 14. It is so hard to fight the illness and the health system.
Hey! Jigsaws and books sound there could be some distraction. That is great. Does she play an instrument? I can tell you how my d is doing just by the frequences she is playing music or reading or doing something nice for herself. It is a chance for getting better if she is reading again. Try to bring her as much books as you can carry...[wink] Books about normal girls of her age having a nice life...
And please start this new threat about media, some of us might need it.
Send you a big hug. Don´t give up hope.
Tina72
Hebrides

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Reply with quote  #46 
Hi Tina,

Yes, she does, she has her flute with her and last week asked for us to bring some Christmas music in. When I spoke to her last night, she talked about trying to do some playing today. It's tricky, as she is segregated from the other patients at the moment, so is limited as to where she can go on the ward, but can probably play in her room. Fingers crossed she does!

Thanks for the hug - we're finding it very hard to hang on to hope...

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  #47 
Quote:
In the meantime D continues to struggle, feels nowhere wants her and she no longer belongs on her current ward.


Heb, does she realize why it is so hard to find a place?  I know in the past you've said that she doesn't realize what role she can play in her own recovery and keeping herself safe, etc.  Now might be a good time to talk about what she can do to help herself get a place and work on being eligible for the programs that might have beds coming up.  Maybe feeling like she does might help to motivate her to put more effort in and start realizing what she can do to keep herself safe.
tina72

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Reply with quote  #48 
That would be a good sign when she does play some music...I hope she will. Maybe she can play some christmas songs for the staff or the other patients?
Virtual hugs for free from me to you. [smile] Join in and come to vent a bit as much as needed. We are here.
Don´t give up hope. You are her mirror. If you give up, how could she fight that beast?
It is a long way. It needs time and food and time and food. Try to do something nice for yourself.
Tina72
eternalhope

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Reply with quote  #49 
Hebrides, I’m so sorry as I read through this thread. I am new to the forum so I don’t have any advice to give, but Tina and mjkz has some great ideas that might help. I will keep your and your d in my prayers. I pray for these kids every night. I too love the idea of her playing music, and it sounds like you’re a musical family. Perhaps that will lift her heart. Sending you a big American bear hug.
Torie

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Reply with quote  #50 
Hebrides, I'm sorry but I'm a little confused.  I realize your d doesn't like being in the current unit, but other than that, what is wrong with it?  I mean, I understand she is "an adult" and this is not an adult unit, but it seems that they have made progress with her(?)   I don't want you to have to waste your energy explaining this (again?) - I just wanted to put it out there that maybe the fact that they are leaving her there is a blessing in disguise?

Thinking of you and your d.  xx

-Torie

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