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.

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Dee23
Hello Everyone

This is my daughter's first time with AN.  She is 23yrs old and was due to start her second year of Masters.  She has been hospitalised since the second week of June via A&E, and is now in a specialist unit, this Thursday will be her 6th week in the unit.

She is on NG feeding overnight and is barely eating anything (this information has come from her not from the staff).  She has gained 3kg (again her information).

She has asked us to come in only once a week and seems to struggle with that.  She did find it easier and almost pleasent when I went in alone, so we are going to continue with that and see how we go.  She won't engage on her treatment and has asked us not to ask questions etc, as she has to deal with this herself and find her own way out.  We don't understand and can't help.

I managed to wind myself up with worry a few weeks ago, thought I was letting her down and should be a lot more involved, did some research (hadn't found this wonderful community then) and telephoned her, it didn't go very well, and I thought ok I'm respecting her wishes and doing what she feels she needs.

I've since tried to remain calm and thankfully found you wonderful, brave people, but have come to realise that I need to be more proactive for her (I think, I'm so uncertain what is best).  As she is an adult the unit are dealing with her alone.  They are in the process of renutrition, she has had scans and blood tests etc, the works.

My question is how do I approach her, how do I let her know that I'm there and will fight tooth and nail for her recovery?  I think the longer this goes on the more difficult it will be and potentially damaging to her body.  I realise at some point I have to have faith in the unit but am finding it very difficult as she in some respects seems to be going backwards, although gaining weight.

Before going into hospital she was very open with me and talked about how she was feeling and the difficulties that she was having, now she seems to be relying on the unit, or perhaps just herself.  I'm not sure if I need to be more patient as this is my first experience of AN as I realise this is a slow process.

Thank you to all who read this, my very best wishes are with all who are and have had to deal with this nightmare.
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Enn

Welcome and so sorry you needed to be here. Yes she is an adult and you can still support/help her. 

Please read around the forum and search for adult children threads as well. I know others with adult children will be here shortly to give you their thoughts. 

You ask how you tell her that you will fight for her- I suggest being blunt and just saying it. She needs
to know that and you need to tell her that. She may not like it the first few times you tell her you will always be there for her. But she needs to know that over and over again. I found when d was upset and even now, texting seems to go better. There is less emotion and with’ hot topics’, I would text ‘ no rush just think about it’ , when I suggested something I knew she would not like. 


Hopefully over time she will allow you to be part of her treatment team. Can you ask her to sign papers to be included in discussions with the team? Or has she locked you out. 


While she is in hospital, please take time to take care of yourself. Also if she lives with you, you will likely need to take a big role in helping her. 

sending a 🤗 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Dee23
Thank you Enn for your time and advice

I know that she wants to talk to me, I think about where she goes when discharged, hopefully this is the start of her opening up again, or at least for me to start talking to her and supporting her.  She hasn't locked us out, but also wants to seperate the inpatient team and us.  As she isn't going to be continuing with her studies for the moment she'll be coming home, but I think that frightens her, hence her wanting to talk to me.  Of course she's so far off being discharged yet but I hope it will start her discussing things with us and realising it's not going to have a negative effect.

I've also found texting is a good way of communication, but can't get a picture of how she is from it.  Mainly because we aren't having any difficult discussions I suppose.  

Thank you again for your time, it is very much appreciated.  I've never been on a forum before and don't feel particularly comfortable doing it, but helping my daughter to a full and lasting recovery is so much more important than that.

Having this resource is a blessing and I'm extremely grateful for all the time and energy people give in making it available to those in need.
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Foodsupport_AUS
Welcome to the forum. I also have a 23 year old, she is well on the way to recovery having first got ill at age 13. . 
I have found over time that my D does not require me to be her therapist, she requires me to be her support. This does mean that at times we have to have difficult conversations about her ED, but more often she needs me to be there to bounce her anxiety off, to hear her worries, to offer that practical stuff such as food, meals, medical care. When she was inpatient again she needed me to hear her and her worries, to be there for meal support. 

My D also has always said that I could not fight this for her, she had to do it herself, much like your daughter. Of course the truth has turned out to be something much more in between. 

Some thoughts, ED does tend to like to box things in and isolate. It is important I think for her support long term that you learn the skills you will need to offer when she does come home. This means learning how to react when she is struggling, learning how to encourage her to move forward. These are important skills, and as much as she says she is doing this alone, these coaching skills are essential and most will fail without someone there to support them. To this end, her current team needs to include you at least in some way. That may mean having a catch up every few weeks or so for a short time to know how things are going, they could also look at offering you education. I would hope this should give you a picture as to what is happening for her. 

Whilst inpatient though one important role is for you to keep her connected to the outside world to normality. My D needed me to keep her grounded and connected to those things that the healthy her liked and wanted. I didn't need to talk to her about her ED, rather I needed to distract her from it, and her ED thoughts. It can feel like you are not doing anything against the ED, but it is actually a very vital role. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Kali

Hi Dee23,

Welcome to ATDT and I hope you will find support and ideas here to help you help your daughter. I'm sorry she (and you) are in this very difficult situation.

While my daughter was in residential I used the time to try and become well educated about eating disorders by reading and trying to learn how to be a good meal support. I also used the time to try and strengthen our relationship. I'm glad to hear your daughter will be coming home and you will have the opportunity to help her instead of her having to go it alone after being released from the hospital. 

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I've also found texting is a good way of communication, but can't get a picture of how she is from it.  Mainly because we aren't having any difficult discussions I suppose.  


You don't have to have difficult discussions at the moment. Texting and chatting can be fine. These things let her know that you are there for her and you care, and it is important for her to know that. She may be experiencing confusion due to her low weight and some shame due to her situation. We spent a lot of time while my daughter was in the hospital just playing games to pass the time, and talking. When she was well enough near the end of her stay there, we went for short walks in the hospital and in the neighborhood. I also brought her some things that she requested to make her stay easier, so if there is anything your daughter might like while she is there—books, music, an e-reader, materials to make crafts (if allowed by the hospital) etc that you can help her with I'm sure she would be appreciative of that. The goal is to have a strong and loving relationship with her in order to be able to help her successfully make the transition from hospital to home when that time comes. And to be able to support her eating enough when that time comes.

The hospital my daughter was in offered family therapy sessions in order to help us all plan for when she came home. We did take up some of the difficult discussions in those sessions. Does the hospital your daughter is in have any similar opportunities? I understand she wants to separate you and the inpatient team however patients who have positive family involvement and help have a better chance of recovery. Positive family involvement can take many forms with an adult child. (My daughter is 22) You can help encourage her to follow the suggestions of her treatment team when she comes home, since that may be difficult for her. You can help make sure she continues in treatment for as long as she needs to. You can help her by keeping mealtimes consistent and help her to eat enough to maintain a good weight when she is weight restored. You can help her reenter her life and be able to return to her studies when the time comes that she is well enough to do so. Much of remission and eventually recovery happens at home after the crisis of being in the hospital is over. 

Others will be along soon to welcome you and share their thoughts with you I'm sure. This is an amazing community of knowledgable parents.

warmly,

Kali

 

 

Food=Love
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Dee23
Thank you Foodsupport_AUS and Kali for your kind words of advice.

I was at such a loss, feeling helpless and panicky.  I'm usually pretty good at research, but with such strong emotions involved that all went out the window.

You've managed to help me focus on what I need and can do to help her now and to prepare for when she comes home.

The unit she's in does have family sessions, but after renutrition I think.  She hasn't felt able to communicate what the units treatment plan is to us.  I think the whole experience has been such a shock and she feels she is being fed when all she wants is the psychological help.  I am beginning to see a change in her, so hope she'll be able to open up a bit.

I've found it very difficult to focus on anything as I've been so worried about right now.  It's such a relief to be able to have so much information and advice in one place.

Warmest wishes to all
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Dee23
An update on what has been going on with D. I'm not sure where to start, we had a text this morning saying the staff have lied to her.  She was told on Friday by the Dr that they would discuss on Monday and that D could decide whether to up her NG tube calorie intake.  They then weighed her, said it was going to be increased to 1250 kcal and that if she didn't agree she would have to go home.  There have been other incidences of her feeling lied to, any amount of explaining the situation and how difficult it is has not changed her perspective.

She feels that the staff are against her and trying to fatten her up.  She has a difficult relationship with the nutritionalist, who is very condesending.  She is still eating very little and is below 14 BMI.  The unit only allow pshchiatric sessions and certain activities when the BMI is at 14 or above.  They have made concessions, starting this week and are going to allow her to start seeing a psychiatrist, and have some activities, as she has been asking from day 1 for some counselling.  They've mentioned before that she isn't progressing and that she might be discharged.  This is all very stressfull.

I have texted her back explaining that the staff work as a team and have to change their plans when different situations present themselves, and that they are adjusting their normal procedures for her given her difficulties progressing.  She has responded that she ****** hates them and that they've lied.  I really don't know what to do, I can understand she feels betrayed, but want her to understand the staff are doing what they think is right for her well being.  I feel nervous about alienating her but feel that saying nothing might back up her feelings.

She seems to be fighting them all the way, and has not really made any progress since her admission.  She's also developing OCD traits, making sure her bed is made in the morning, her chair has to be a certain way etc.  I'm not sure what to do.  Any advice would be very welcome.  Thanks.
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