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:

rosa
My daughter has just turned 18 and is about to be transferred to adult services. She was diagnosed with anorexia 4.5y ago. She has had a very difficult time, with anxiety and excessive exercise; very low weight up to 30% weight loss; having to stop school for 7 months etc. She was offered inpatient treatment many times but has always refused it. We have managed at home with huge effort and variable support from CAMHS, crisis intervention etc. She has been back in school since September. CBT-E began in January and it has been helpful. Self awareness and skills have developed. Weight has gradually improved and is now around 3-5kg from possible target weight (though this has never been specified). She has confirmed osteoporosis and has never had a period. Severe anxiety around eating, excess exercise, dietary restriction and various rituals continue.
My daughter has worked hard with the CBT-E and engaged with the psychologist. She does not want me to be involved these days but she needs our support very much. The current plan is that she will have 3 more sessions of CBT-E (so a total of around 30 sessions) then a break of 4 weeks and an assessment with adult services. She doesnt want to go to adult services but of course I will attempt to persuade her.
I recognise that my D and family and I have done well in many ways. However, I think she has many entrenched behaviours and thoughts and that she needs significant support. She is not at a stable weight or state. I am frightened that the transfer to adult services will cause a relapse. The adult services have a reasonable reputation I think.
I realise that anorexic behaviours and cognitions take time to improve with weight gain. Should I be patient and see how things go or is the situation urgent? Should I be demanding more CBT-E sessions until my D is stable? I am not sure what my expectations should be or where to turn. All advice appreciated.
Quote
ValentinaGermania
Hi rosa,
is there a legal need to transfer her into adult service now? I don´t know where you live but here in Germany 18 is legally adult but you can join a child/adolescent team up to 21 if you want. What is her feeling about beeing adult now? Does she like to be together with elder people/patients?
If she has contact with other patients in that adult program I would think that it can be triggering to get in contact with elder patients who have a long-year experience with ED. It may give her the wrong sign that this will never end and she will never get rid of it.
My d is 17,5 now and I will try to keep her in adolescent programm as long as possible.
Think about letting her sign a health contract that you will be in charge again if she cannot make healthy decisions on her own (I don´t know what the name for this in your country but I hope you understand what I meen - if not please translate "Vorsorgevollmacht" or "Patientenverfügung", thats the names in german). Without that the doctors may not be allowed to tell you what is going on...
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
Torie
Hi Rosa - So sorry you needed to join us here, but this is really the best place for information and support.

It sounds like your d needs to keep gaining weight.  That's really the key.  So here's the question: What can you do to make that happen?  It's OK if they didn't give you a target weight because they are usually not set properly anyway.   She needs to keep gaining until her brain starts healing.  It's a slow process, but it doesn't start until their weight is where it needs to be.

Please feel free to ask all the questions you like.  That's why we're here. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
rosa
Dear Torie and Tina
Thank you so much for your thoughtful and helpful and prompt replies, I am so grateful. After years of feeling so alone and desperate I can barely believe that strangers are willing to give me time and support.
It is not a legal requirement for her to be transferred to adult services as far as I know. I will have a think about which service seems most appropriate for her. I will also discuss with my d.
As you say Torie, weight gain is the absolute key. The weight has been nudging up the past months so I am fearful of any disruption. We are weary, though!
Thanking you again
Rosa
Quote
rosa

Good idea about a contract- can anyone advise me what to include in a contract?

Rosa

Quote
ValentinaGermania
Hi rosa,
feel free to ask what you need and you will see there are a lot of very nice people in here who will give you support and emotional help which is the best support ever.
I´m just in here for a short time but it is wonderful how people can help you from all over the world. Just the time shift makes it a little bit difficult. You may have to wait a bit sometimes.
I can tell you about the contract what it is including in Germany:
If our d is not able to make decisions on her own (because of ED or because of an accident) which is determined by a doctor we have the legal right to make that decisions for her as long as this situation is there.
We can decide where she lives (IP or at home), what surgery she gets and so on.
We decide about all legal things up to financial decisions and post office things. So we can open her letters and discuss with her insurance and talk to the doctors.
All that surely only for the moment which hopefully will never come she is not able to do that.

By the way, this has nothing to do only with ED. She could have a car accident, too. And that is important to do for us anyway. We must decide who is in charge when we are lying in hospital because of an accident or a disease. If we have younger children, its more important than everything. You might get into an accident with your husband and the kids alone at home. That can happen on the way to the supermarket.
My father had signed such a contract and he had a bike accident just around the corner of his home some years later. He fell onto his head and had a terrible brain injury from which he died a week later. It was so helpful to have this contract to let the doctors know what he wants us to do in this case. Most people don´t need that ever but if you need it it is very helpful.

There are surely some models for contracts to find in http://www. What country are you from? Maybe there are members who can send you some information from your country.
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
Foodsupport_AUS
Welcome Rosa. It sounds like you have had a long battle with ED so far, and it is a long way from over. It is great that she has managed to gain some weight under her own steam with CBT-E. 
Time limited therapies leave people in various places towards recovery, I find it of concern that your D feels she will be fine to disengage from care. To me it sounds very much like her eating disorder remains active. A plan to keep her moving forward, however slowly is essential.  She has severe medical complications from her illness. She still does not have her period. She is at high risk of relapse for a long time after she does get to an ideal weight, remembering that many often set that weight too low, as well as in the future. 

Many health care contracts are not legally enforceable. They do however set some clearly defined guides that parties are agreeing to and consequences if things change. It can help people feel much more comfortable. The difficulty with them is, if the person with the illness refuses to abide by them. This link here has a number of samples of this type of thing.
I think Tina that you are referring to what is called in Australia, Power of Attorney. We have two, financial and health. The first is set in motion as soon as it is signed. That is theoretically the attorney can make financial decisions for the other person. It is of course a major decision and would require significant trust. It cannot be coerced. The second can only be instituted when someone loses capacity to make their own decisions, however it cannot be used for mental health care. It can also not be coerced. So it would work the same way as it did for Tina's father. 

Rosa, I am not sure where you are based, but there will be similar laws where you are. The ability for you to use them to help keep you D in treatment will be very variable. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
Quote
rosa
Dear Tina and Foodsupport
Thank you for your messages.
I live in UK and I think the contract would be Power of Attorney, I will look into this.
Right now I am feeling frightened about my daughter's anorexia continuing and possibly worsening again. She has had phases in the past lasting over 6 months of not engaging with CAMHS- which is when her weight fell off a cliff and she was extremely unwell and disturbed.
She has been given the message from the psychologist that she has 'done' 'the course of CBT-E' and has finished it so she is being 'discharged'. She has been told that it is appropriate for her to manage alone and that it would be 'courageous.'
I just really feel that she is vulnerable, that the weight and state are not stable. She is exercising excessively and still struggles to eat a basic meal plan. She spends most of her time studying, excessively. She is quite socially isolated. She is often stressed and anxious and irritable.
I have been a cooperative parent, not very demanding of the services. But now I feel demanding! I want her to be seen asap by the adult services. She keeps being given choices. She was asked when she would like to see adult services for assessment and she has said end of August- after which there may be a delay for treatment. As her weight is not too low I fear she might not be a priority, but as we know it is state not weight. Of course the ED will avoid appointments and confrontation so choices are not ideal.
We have been through so much, I am desperate for progress in the right direction.
Any thoughts appreciated.
Rosa
Quote
mjkz
Quote:
. She has been told that it is appropriate for her to manage alone and that it would be 'courageous.'


No, no, no, NO!!!!  I'm livid on your behalf.  What a horrible thing to tell anyone struggling with anything!!!  It is courageous for her to recognize she needs help and support.  My daughter is in her late 20's and still lives with me because it has taken us over a decade (she got down to a BMI of 9 at one point) to get her where she is now.  She was told something similar and it led to years spent in a hospital because she had to manage her own illness.  Just no.  That is not FBT in any form and I'm so sorry she was told that.  The support she has had from her family has been key in keeping her alive and shouldn't change now just because one clueless person is trying to end her therapy on a schedule that is not appropriate for her.

My daughter and I have a contract that I wrote spelling out what needed to happen for her to live with me, what would happen if she couldn't abide by the contract, etc.  It spells out clearly behavioral, social, work, life goals (she did the life goals and we worked together on the social and work goals).  It really helped to have it spelled out what would happen if she couldn't keep herself healthy.  It was fairly rigid at first but has gotten a lot more fluid as she has gotten better.  We did have a huge blip last Thanksgiving where she nearly ended up back inpatient after I had surgery. She did everything right while I was gone and did an amazing job. She then organized by herself our yearly Thanksgiving dinner for the homeless which is a massive job.  When she could do it, she thought she was "cured" and ready for life without any support. Unfortunately she stopped eating during that chaotic time and came within hours of being admitted.  She did pull out of it with a lot of support but that contract was a life line for me to be able to point out the weight loss and her agreement to enter a hospital after getting below a minimum weight.  I would highly recommend it for young adults struggling.

Our contract is between us and as Foodsupport_Aus noted not legally binding.  I do have a conservatorship over my daughter which is legally binding and similar to what Tina described.  Also she has signed release of information for all treating doctors, etc. on top of that.  I needed not only legal but also our personal contract to keep her on track to getting and staying healthy.
Quote
rosa
Thank you for this, very helpful. I feel angry that she is being encouraged to manage alone when life is so hard for her. She needs support from us and also from professionals. I dont think she is ready for 'choices' and 'independence' because the anorexia will dominate.

The contract sounds excellent- I will work on that one.

Thank you so much
Rosa
Quote
ValentinaGermania
Hi rosa,
listen to what your heart says, you know her best. Managing alone is something for the end of recovery. Seems your d needs a lot of help in the moment you do everything right. You will know when its time for choices and independence, I´m sure.
Be sure you have 2 contracts: one personal even if its not legally, one legal about health and finances.
No need for thanks, we are all sitting in the same boat. Its a nice feeling to seem to be able to help someone.
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
rosa
My heart - and head- says that my D needs lots of support- compassion, encouragement and firm guidance. When I see her struggling to eat small portions of food, with huge feelings of guilt after eating, always delaying meals, running and cycling excessively, highly anxious- it is clear to me that she continues to be gripped by anorexia. She is good at saying what the professionals want to hear at appointments. 
Another question- she has had 30 sessions of CBT-E. The psychologist seems to be saying that now it's up to her to 'continue' the recovery- she has been taught the 'tools' for recovery. They are trying to get her to move to adult services. What should/ could adult services offer? Simply supportive monitoring and encouragement and building a relationship with her? I recognise that they wont want to restart CBT-E from the beginning again.
It is likely to be hard to get my D to the adult services assessment. How do I persuade/ encourage/ force her to do this? She is studying hard for university, that is her goal/ aim in life.
This is all draining and exhausting me and my H so much. I feel so sad for my whole family- my ill child who is missing out on so much and who is tortured by AN. The other siblings who have to suffer the stress and exhaustion..
Rosa
Quote
melstevUK
Hi Rosa,

Welcome and just to say that I am so sorry for what amounts to c**p treatment since your d's diagnosis.  It beggars belief that services are still so uneducated, uninformed, lacking in passion to get their patients on to a good recovery path and still put responsibility back on the patient.  I sometimes wonder why I still end up being gobsmacked when I hear of poor support - when clearly things are just not improving in many areas of the UK.  What makes me angry is that your d should have been pushed into an IP situation - the choice to refuse should not have been hers.  

But the main thing is that you have found this forum and you will get support.  It is a very outdated system which puts CBT-E at the heart of recovery and not weight gain.  The weight gain should have been pushed by others in the team, while the psychological input was going on.   Big sigh on your behalf.  CBT-E can be successful - but ongoing support for weight gain should be happening at the same time.  For your d FBT (family based treatment) should have been the first line of support - it appears to have been absent.

However, the positives are that your d wants to go to university, has plans for her life, and is still relatively young.  If you can accept that brain changes continue right through into the twenties and that your d is right at the start of that transition period, then you can understand that you have a big window of opportunity to get her into a recovery path and eventually recovered.  However, there is no recovery without weight gain so your priority is to keep her engaged with adult services and it may be useful to ask for a dietitian to help your d with a meal plan and give her the confidence to understand that one biscuit will not equate to one kilo of weight.  

In terms of getting your d to attend an appointment with adult services - it may help to be absolutely truthful: she is unlikely to manage university if she is still so unwell.  Keep talking to her about this being an illness (she will not see it this way) and that she needs to cooperate with you so that she can start pushing for weight gain.  Acknowledge that this will be both scary and difficult - but that noone else is going to love her and support her as much as you and therefore she needs to attend this appointment and move on because you both need support.  Don't accept a refusal or denial from her that everything will be fine - she is clearly not fine and you have to insist that you want her to get her life back by being able to eat, stop exercising and accept gaining weight as a first step to recovery.  

Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
rosa
Thank you so much for your supportive message. It is so helpful for me to have other people's angles on our situation. I tried to trust our local services because it felt very hard to access alternatives- researching options felt overwhelming when we were exhausted- travelling felt impossible with siblings etc..
We had some FBT, I think, for some time, with limited results. My daughter was offered a choice between CBT-E and psychotherapy, 18 months ago- which made me angry because she chose psychotherapy of course because she knew that she wouldn't have to face the anorexia. In my view she wasted 6 months, it was agony.
Weight gain has always been the aim but it has been so hard to achieve.
Anxiety has always been part of the problem- but not depression. I think this has contributed to the complexity and resistance and long duration.
Thank you for your advice about how to encourage my daughter to engage with adult services, very helpful. My d is saying she will go to the assessment appointment in 4 weeks time but that she doesnt want me to go... the approach of the CBT-E/ psychologist has been to get my D to take more responsibility to recover- so she pushes me away.. it has been very hard after the FBT approach of us being very involved. I feel unsure about how to feel or what to do for the best... there is so much stress and conflict and secrecy and exhaustion.
Thank you so much for your practical and hopeful advice, reminding me about the positives- that she is aiming for university and to encourage her to recognise that she needs to recover to survive there. Also to remind her that no-one will love her more than us.
I have tried so hard to support her and to be informed by reading Eva Musby and Janet Treasure's books etc- yet keep feeling confused and doubtful, exhausted and sad. I know that I need to be kind, compassionate, firm, boundaried, flexible, calm- and to look after myself.. but I feel that I am failing much of the time.
All advice appreciated
Rosa

Quote

        

WTadmin