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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

rdeb175
Hello everyone - I've been on and off this forum for a number of years, with a break when my now 20 yr old was in recovery from AN for a while.  However, there was a bad relapse autumn last year, which was very badly managed by the services.  In the end my d was finally admitted as an inpatient in Scotland (we're in the Midlands) where she stayed for 6 weeks before moving closer to home.  She has been in hospital now for 9 months and has still not reached a healthy weight.  The hospital announced to me that today that they'd decided to discharge her, as they felt there was a law of diminishing returns with her staying in hospital and she would be leaving in 2 days time! 

My d has had one overnight stay at home since she's been in hospital, the last 9 months, and has had no practice in eating by herself unsupervised.  When she came home from hospital from her first inpatient stay (aged 15) I supervised and managed all her meals and did the FBT thing.  However, she is adamant that I can't do that to her now and we are already at loggerheads.

Has anybody had experience of this sort of crash discharge (I don't think we've even got community support in place yet).  Can I refuse to take her home at this short notice?  And how to do you manage a 20 year old who has bad anxiety, no occupation, no studying in place, hardly any friends, and in whom the ED is still so very strong.  Any advice greatly appreciated... 

Quote
deenl
Hi rdeb175,

So sorry for the terrible way your case is being handled. The only thing I could think of was to contact Eva Musby. Her website (anorexia family) has a section on care in Scotland and she knows the system well.

Personally I would refuse point blank to accept care if you daughter without any sort of plan. But what a horrendous situation to put you all in.

Wishing you strength and courage,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
Quote
Kali
rdeb175,

This does sound very difficult.

Is there someone you can speak to who is in charge so you can explain your concerns and ask questions? Do they know that she is adamant that she is opposed to you helping to be a meal support when she comes home?

Did she have a team before she went into inpatient near you who you could get in touch with, explain your concerns, let them know what is happening and see if they can be of assistance?

It would certainly be beneficial if a step down plan could be put into place to support her and there was a discussion of treatment options for her when she leaves if you cannot get them to keep her longer. Hopefully some UK carers who know the system there will be along soon to give you some ideas about how to proceed.

Kali


Food=Love
Quote
Torie
Hi rdeb - So sorry for all the difficulty.  I agree with deenl that contacting Eva Musby is a great idea.  She is kind of like a saint. (A very knowledgeable one.)

I hope it is possible to refuse to accept her home so abruptly.  It's hard to imagine such a sudden transition would be advisable.  I know at least one forum member refused under somewhat similar circumstance, but unfortunately, I can't think who that was.  Hopefully someone else will remember.

It sounds like your d will need a great deal of support after discharge.  I wonder if you can arrange a contract along the lines that you will provide financial support for abc, and your d will follow medical plan (weigh in, bloods, etc) and eat what you serve.

Please keep us posted.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
Foodsupport_AUS
It is truly shocking the management strategies some of our children are exposed to. Admitting someone to hospital for nine months then discharging with two days notice, not because she is better but because they can't think of anything else to do is deplorable. 

You have already had some good suggestions, in contacting Eva Musby and also contacting the unit and insisting that a clear discharge plan, follow up and, ongoing management strategy is in place. She needs some sort of structure and support even if she is insisting it is not you. She has been institutionalised for a prolonged period of time - one thing I dislike about the UK system of residential care - and it seems as though there is no support system being instituted. She would get more on discharge from prison. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
melstevUK
rdeb175,

What a nightmare and what a horrid thing to do.  So unprofessional.

I think you need to stand your ground here and say that two days after all this time is too short notice and that the hospital is setting her up to fail and that if you do not have a plan and support in place, she will inevitably be back in again.

Ask for ten days - they should have an outpatient team to discharge her to.  Have they been informed?  They won't be happy having a patient thrust on to them from IP at no notice.  

You must have details of the outpatient team, if not request numbers and explain what is happening.

In the meantime, use whatever time you can get to prepare your d for being back under your care - you maybe need to discuss things to do with eating in terms of cooperating.  Your d and you need to work together as a team to move her weight up, however hard that will be.  As you say, she is an adult now - FBT style of operating would be ideal but if it is not achievable then try and get d onside and willing to cooperate.  You can put a week's menus together so she has no shocks, and at this stage it does not matter if many meals are the same to make it easier in the beginning.  You just need to ensure that weight keeps going on when she comes out, and that she doesn't lose.  

I despair of some of the awful things people have to go through with.  I simply cannot understand their callousness and lack of understaing.
Big sigh on your behalf.


Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
mjkz
Quote:
Has anybody had experience of this sort of crash discharge


Unfortunately yes and it never turned out well.  Seriously my daughter has been kicked out of places that let me know after they dropped her off at the airport to fly home that she was coming.  It is totally unprofessional and down right malpractice as far as I am concerned.  I hope you have been able to get more time and things put in place.  This kind of stuff makes me sick.
Quote
rdeb175
Long discussions with the doctors and my d's care team came to nothing, they were adamant she was to go.  They felt she was becoming too attached to the hospital and if she was given a discharge date she might sabotage her discharge by refusing to eat, in order to stay.  I thought that was very unlikely.  They also said she wasn't complying with the programme of recovery (not attending all the group sessions, standing instead of sitting when required) and if she couldn't engage with the programme, then she couldn't stay.  That sounded so contradictory I could barely find the words to argue with it.

The community team are like a rabbit in the headlights - they're not even available for a meeting for a week!  So my d was discharged this morning and I brought her home and we have our first contact with the community team in a week's time.

The only thing that gave me comfort was that the hospital said they were going to be very prescriptive with the community team about what my d needs, and quite a high threshold of BMI that she has to maintain otherwise she should return to inpatient.  I believe the fact that she was sectioned offers her some protection with regard to services that have to be offered my law (again - any UK people who've had this experience it would be really useful to know how 'real' this protection is).

My d got on quite well today at home, we were relaxed and she ate. One day at a time...
Quote
Foodsupport_AUS
rdeb175 it is great that she has eaten today. I guess all you can do is make sure there are clear boundaries and expectations and support her. She may be willing to work to avoid being readmitted. 


Sudden discharges here in Australia too. I was called back to the hospital after visiting to pick up D, having left 10 minutes before. She had been there for four weeks. 




D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
Torie
rdeb175 wrote:
My d got on quite well today at home, we were relaxed and she ate. One day at a time...


Well done, you!

Rdeb: 1
ED: 0 

I am appalled that they have put you and your d in this situation; I agree that the only way forward is one day at a time.  Please let us know if there's anything we can do to help. xx

-Torie


"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
ValentinaGermania
"My d got on quite well today at home, we were relaxed and she ate. One day at a time..."

That sounds great for the start. Keep a strict routine with meal times and try to make her eat at least every 3-4 hours to keep her blood sugar level constant. In between distraction, distraction, distraction...
Did they give you a meal plan? Sorry you need to start than from 0 to 100...

Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
rdeb175
The hospital have sent her home with a meal plan which I've not seen the detail of, but I know the basic outline - which so far she's following very carefully.  She seems keen to show me that she's eating, without me asking, and the rigid structure of the plan appears to be holding.  She still needs to gain weight, BMI only just over 18, so the hardest part to do yet.  She seems to think this BMI is ok, otherwise the hospital wouldn't have discharged her. But I"m not having that argument yet.

I'm at work tomorrow so she'll have her first day at home alone.  Will see how it goes.

I saw someone posted a great video about weight gain by Tabatha Farrar - I'm trying to get my d to look at her site, but she's not keen. 
Quote
melstevUK
Hi rdeb175,

As long as your d can stick to the structure of the routine in these early stages, you will probably be both ok.  Ultimately she has to accept that if she does not eat at home she will eventually have to eat in hospital and she is maybe now old enough to take that on board.
Also, I am sure she wants to be at home now.

If you can send texts through the day to nudge and encourage, that will help her.  Worry less about variety in these stages and just get the routine going, and then you can add more calories at different points in the day.   

Scary days for you but keep looking forward and as d manages a few days successfully it will get easier.
Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
ValentinaGermania
rdeb175 wrote:
The hospital have sent her home with a meal plan which I've not seen the detail of, but I know the basic outline - which so far she's following very carefully.  She seems keen to show me that she's eating, without me asking, and the rigid structure of the plan appears to be holding.  She still needs to gain weight, BMI only just over 18, so the hardest part to do yet.  She seems to think this BMI is ok, otherwise the hospital wouldn't have discharged her. But I"m not having that argument yet.

I'm at work tomorrow so she'll have her first day at home alone.  Will see how it goes.

I saw someone posted a great video about weight gain by Tabatha Farrar - I'm trying to get my d to look at her site, but she's not keen. 



Try to get that mealplan in your hands and make sure she is eating all that and try to eat with her together.

A BMI 18 is surely not enough to stay with and no good relapse prevention. But BMI alone says nothing, we ask for state not weight here. What ED behaviour is left besides sticking to the mp?
Keep feeding. There is light at the end of the tunnel.
Quote

        

WTadmin