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

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CED123

D was admitted to IP yesterday as planned. Whole admission process took 6 hours - info, forms, medical assessment (blood, weight etc), lunch, medical history, settling into room. I had thought they might restrict visiting in the first few days to settle in but they don’t so I was back there in the evening also to visit. D was obviously very upset/sad, wished she had done the eating at home, didn’t want to stay,  but we made it through and she wasn't too bad when I left. she did manage to eat the lunch - sandwich (with actual bread!!) , fruit and yogurt - but had more problems with dinner so had to have fortisip. 

D had lost another kilo in the last week,  so now lightest she has ever been.  and the worst part for me was summarising where she was at with eating and exercising. I know it’s mostly deteriorated in the past month while waiting but how did we get so bad? Why were we not able to stop it? When it’s day by day and incremental you don’t see it quite so much- summarising it in one go just felt terrible. i haven’t stopped yet to deal with my feelings as I was back in work today and I think if I stop and cry I may never be able to stop!  but she will get so much therapeutic support in IP and hopefully is now engaging which is good. I really don’t see how anyone manages to get better on a once a week trip to camhs. 


back to visit tonight. D wants me to visit everyday (we’re not far away) which I will try to do the next few days but it’s not sustainable in the longer term with 2 other children to care for too. 

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yellowcaty

Hi

Just sending you lots of love and a big hug. I know exactly what it is like leaving your precious baby in an IP unit.

When my d was first admitted we were only allowed to visit twice a week. It was really hard at the beginning but it also forced her to settle. We still had phone calls each day. Unfortunately my daughter had to transfer to another unit and there we could visit daily. This was actually much harder as we had to go through that immediate feeling of leaving her every night. 
I hope you manage to find the right balance for all of you. Make sure you take lots of care of yourself during this period as it is emotionally draining. 

Sending lots of strength x

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tina72
"I know it’s mostly deteriorated in the past month while waiting but how did we get so bad? Why were we not able to stop it?"

We all got to that point and we all did not know how we got there. This disease is so tricky and you do not see all the little steps down until you summerise it.
But it is not your fault and you had no chance to stop it without help. A lot of us needed IP to get started (my hands up too). So try not to look back, you cannot change the past anyway, but you can change the future. Take some time for self care and reload your batteries and take some time for the siblings now. She seems to be in good hands and will get help now.

Please be prepared that once the ED realises that he is going to be fought very hard there she will probably begg you to take her home. Think about what to say then before it happens so you are prepared.
Keep feeding. There is light at the end of the tunnel.
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Enn
CED123 wrote:

D was admitted to IP yesterday as planned. Whole admission process took 6 hours - info, forms, medical assessment (blood, weight etc), lunch, medical history, settling into room. I had thought they might restrict visiting in the first few days to settle in but they don’t so I was back there in the evening also to visit. D was obviously very upset/sad, wished she had done the eating at home, didn’t want to stay,  but we made it through and she wasn't too bad when I left. she did manage to eat the lunch - sandwich (with actual bread!!) , fruit and yogurt - but had more problems with dinner so had to have fortisip. 

SHE ATE ACTUAL BREAD! That is great!

D had lost another kilo in the last week,  so now lightest she has ever been.  and the worst part for me was summarising where she was at with eating and exercising. I know it’s mostly deteriorated in the past month while waiting but how did we get so bad? Why were we not able to stop it? When it’s day by day and incremental you don’t see it quite so much- summarising it in one go just felt terrible. i haven’t stopped yet to deal with my feelings as I was back in work today and I think if I stop and cry I may never be able to stop!  but she will get so much therapeutic support in IP and hopefully is now engaging which is good. I really don’t see how anyone manages to get better on a once a week trip to camhs. 

It may not have hit you yet the monumental event that is happening. Knowing she is safe and getting the help she needs although it is a relief, it is very emotional. There is the grief and the fact that this is the reality and the relief. If you have to let is out by crying, so be it. It is needed. You have to release that emotion somewhere. The fact that she is safe allows you to take care of you now a bit. I know with the other kids it is hard. But take a big breath, let it out slowly. It is normal and expected you would feel a jumble of emotions. Don't try to explain them, just feel. Big hug!


back to visit tonight. D wants me to visit everyday (we’re not far away) which I will try to do the next few days but it’s not sustainable in the longer term with 2 other children to care for too. 

Maybe for the first little while you go when you can and based on how she and you are doing away from each other. Give space for plans changing overtime. This is new for everyone and although better than before, of course it is stressful.
CED I am pleased this has happened. Your child has needed this for so long and although it is sad, it is necessary right now for the future joy you will have.❤

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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CED123
thanks all. Just having a sandwich in the car park of the local supermarket (visitors obv have to leave during dinner). I realise it will have ups and downs but she is already more settled and less teary. She has eaten cheese!! And said H can visit! I am enjoying a small moment of feeling some progress. Have also planned a teary bath and glass of wine for when i get home later though to deal with some of the other emotions.
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Jeanette

Hi, 
Glad d has finally got IP place and seems to be settling in.  I have been following your posts for a while since my gd was diagnosed in July.  She also started losing weight every week in the last month. As much as we don’t want them to be upset in IP and away from us it does seem more natural than my gd who settled in straight away, showed no emotion and actually acts as if she never wants to leave. It’s good that your d is actually eating in there, It sounds like things are going in the right direction.
Take care of yourself. X  

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deenl
Sounds like a plan. 

I am so relieved that she was admitted on schedule.

CED123 wrote:
and the worst part for me was summarising where she was at with eating and exercising. I know it’s mostly deteriorated in the past month while waiting but how did we get so bad? Why were we not able to stop it? When it’s day by day and incremental you don’t see it quite so much- summarising it in one go just felt terrible. i haven’t stopped yet to deal with my feelings as I was back in work today and I think if I stop and cry I may never be able to stop!  but she will get so much therapeutic support in IP and hopefully is now engaging which is good. I really don’t see how anyone manages to get better on a once a week trip to camhs. 


I know that your head probably understands that EDs fall on a whole spectrum and it is just that your heart doesn't quite believe it yet. To help re-inforce the facts (that your head knows!), here is a note on the spectrum aspect from Kartini Clinic. In time, your heart will find peace with this too.

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I think it goes without saying that neither the patient nor their family are to blame for which form the patient has been afflicted with (mild, moderate, severe, chronic disabling)-- but in case there are a few readers out there for whom this is new: they are not to blame!

Because the spectrum of severity of illness is broad, the expected results that can be obtained with good treatment are not uniform. And I mention this because understanding that not everyone will reach “full psychological and physical recovery” within months will help avoid the trap of assigning blame for failure to do so.



I highlighted what I think is the most important part. The same treatment will not have the same effects for everyone due to differing intensities of the illness. You absolutely gave it your all and searched high and low for additional ideas but you lacked the level of support that your daughter's illness needed. That's it. If there were more options for care, like someone to visit the house a few times a week and a therapist to support the parents, I think that with your level of motivation and persistence it would probably have worked. But unfortunately those sorts of supports for nutritional rehabilation at home do not exist.

I am reading a book called Good Habits, Bad Habits totally separate from the ED but it is amazing how much of it I see reflected in how my son's behaviours. I am only a couple of chapters in but it explains all about neurological pathways and how they are triggered (in spite of what our actual goals are) mainly by cues in the environment (with ED that means us and our kitchens, living rooms, their bedrooms, time of day, routines, safe foods, etc). By changing the environment it can make it easier to change the habits which is exactly what we experienced when our son went into hospital and later when we took trips away. Reading this book, it totally makes sense that these were periods where big changes were made.

CED123 wrote:
And said H can visit!

Having been the emotional punching bag for our son, my heart goes out to him. I am thrilled to hear this. I'm sure you are too.

It will most likely not be plain sailing but I hope the feeling of progress continues for you all.

Hugs,

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.
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sandie
What a mix of emotions you must be feeling. So relieved for you that she is there and a great sign that she ate cheese and bread. Enjoy the feeling of progress. Very precious. Xx
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Robin1
It's been an emotional rollercoaster for you all and i hope you can take some time now to rest and regroup. A bath and wine and a good nights sleep are a good start. X

R x
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CED123
Thank you all. I know I keep saying thanks but I am really so thankful for feast. It’s like an army of support, who really understand everything too.
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Enn
May I add another interpretation of the acronym?

For 
ED 
All
Stand 
Together.
FEAST😊
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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CED123
trudging onwards.  She settled in well the first few days but as might be expected is now less happy - lack of structure/distraction on the weekend hasn't helped. Plus I was trying to socialise the idea of not visiting every day, as the 9yr old was missing me at bed time, and that didn't go down well. She said she didn't want to see us today, so we can spend more time with the 9yr old, but I think that's just feeding a narrative of being abandoned, so I'm going anyway (S is on a playdate). If she doesn't want to see us at least she knows we came. then i'll go back later for post dinner supervision and shower supervision. we'll just have to see how it goes on the visiting every night.
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sandie
Hard to balance the love and attention everyone needs. I expect you are right about the narrative of abandonment which Is likely inevitable. I am sure she will appreciate at some level that you came.  Xx
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Enn
You have a good plan in place. I hope it goes well and I hope you are feeling well and supported. 
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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tina72
CED123 wrote:
lack of structure/distraction on the weekend hasn't helped.


Think about how you can distract her more when you are not there. Books, puzzles, handcraft, whatever gets an hour around would be nice to bring her. My d knitted socks in IP for nearly everybody in the family, for friends, the nurses...it gives them the feeling of being able to give something back and to do something for others which my d found helpful.

CED123 wrote:
then i'll go back later for post dinner supervision and shower supervision.


I am impressed that this is possible in that IP, it sounds great that the parents are involved in supervision already while they are IP. Totally impossible to think about that here...
Keep feeding. There is light at the end of the tunnel.
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deenl
CED123 wrote:
as the 9yr old was missing me at bed time,

Ah, the poor pet. My 9 year old is now 13 and is totally fine. It seems like doing what I could when I could was good enough (even though I had to drag him crying into school and dump him so I could get back to self harming ED son ðŸ˜­) There is no doubt that he experienced stress in the nightmare first year but once the whole situation was at least stable, he went back to himself without any long term issue. All kids are different but I hope this will be the case for you kiddo too.

CED123 wrote:
but I think that's just feeding a narrative of being abandoned, so I'm going anyway

This is what I thought and did too. I learned to bring a book. When he reacted badly to my visit, I would go over to the café and have a coffee and a read. It was actually quite a treat among all the chaos. I would try again after 20/30 minutes and if he still didn't want to see me, I would head home.

Sending hugs,

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.
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melstevUK
CED123,

I am so very glad that d is finally IP and getting the help and support she needs.

You are trying to support her and worrying about her being there without you  - and that is natural.  It is also normal that you want to be there and comfort her as much as possible.
But you need to use this time for getting your strength back, taking a rest, and let her be looked after by others while you have time with the rest of your family.  She also has to learn that she is there because she is ill and that by not complying with eating at home, she has now to learn to eat in hospital.  At some level they have to take responsibility for the choices they make - even though the illness is not a choice - and your d needs to know that not eating and losing weight is no longer an option.  And that her moods and rejection of you don't put you either up or down.  She has to see you doing what needs to be done without being able to manipulate your response in any way.  

I remember the first time when I emotionally 'split' from my d and consequently from the hold that her ed had over me in terms of the fear it generated - that awful sinking feeling in the stomach when they refuse to eat in particular - when she was in hospital the first time round. I told her that I was taking the family and supportive friends out for a meal on my birthday as a thank you.  My d was furious that I could be considering going to a restaurant when she could not go along and eat.  I suddenly realised that I was no longer prepared to put my own life on hold because of her illness so I gave her the option of coming home for the night, and eating before we went out, and then perhaps having some fruit or something when she was out - or staying in the hospital.  But I told her in no uncertain terms that I was celebrating my birthday with or without her and that was the end of it.  Needless to say she agreed to come home, enjoyed the evening, even though she was still pretty unwell at the time.  Now she remembers none of the arguments or how she ended up going, just that we had a great evening.  

So at present you are being affected by d's moods and are worrying about her feeling abandoned.  You have to try and break free of that anxiety that the illness gives you in terms of wanting to make her feel better.  She has got a hard time ahead of her - but the best bit is they don't remember much when they are very ill and her memories of it all will fade in time.
Make this time work for you - don't run yourself ragged visiting every day.  In all honesty, she will be fine with less.  She is there to eat and put on weight and that process will involve a lot of unhappiness for a while, with or without you there.  The staff know what they are doing.  Please take care of yourself while you have the chance.
Hugs.
Believe you can and you're halfway there.
Theodore Roosevelt.
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sandie
Gosh Melstev, I know your comments are directed to CED but feel compelled to say that is a really interesting post that has made me reflect on the hold ED and my D’s moods have over me. “Breaking free” of that anxiety is a very powerful and challenging concept. Thank you. 
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mjkz
I couldn't say it any better than Mel.  Your daughter is a safe spot being looked after by professionals.  Now is the time to recharge your own batteries and spend time with the rest of your family.  Get caught up with things you need to get done.  Your daughter will need you 24/7 when she gets out and your 9 year old needs you now.  His sister just went into the hospital and it has to be scary for him.  I did the same as Mel and my daughter was so angry that I wasn't there 24/7 with her in the hospital but reality was I needed time for me and my own health.  I lost my marriage over her illness.  I don't have any other children but now is the time you have with the 9 year old to help soothe some fears and catch up on lost time.  Your daughter's illness has held you all captive when she was living with you.  Don't let it do the same now she is in a safe spot and can learn some new skills to help herself.
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mid73
If just like to say thank you Mel too for that post. I’m terribly manipulated by my daughter and her moods. Foul mouthed and abusive to me one minute then quietly crying in bed staring into space another. I too feel awful anxiety that I can’t move forward with her or get her to either do what needs to be done or seek help. Also I never know what to say and whatever I say doesn’t help.

i just need to learn to step back sometimes I think. Or have some responses that let her know I’m there for her but won’t get involved in endless circular discussions or ED mind games ! 
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CED123
Thanks Mel.  As always though with feast and ED: such great advice, but so hard to put it into practice! I think at the mo I'm just going to take it one day/week at a time and see where we end up.
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melstevUK
CED123,

You are likely to be exhausted and weepy, and feeling so sensitive to d's needs and feelings - my advice is for when you are a little bit further down the path, having confidence that she is being looked after and eating and gaining weight.  It is early days just now.
But in general - we do need to learn to have a separation between us and our ed children if we are going to be effective in the longer term.  They don't deliberately manipulate us, it just seems to be a part of the illness, and it is for us to try and pull them through this childhood/adolescence which has become turbulent and 'off the rails' and to keep focused on that future that they deserve and in which they become adults and reach their potential.
It is why we always have to keep an eye on the long term as well as the short term - often described as a 'dance'.

Well said mjkz too.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Foodsupport_AUS
CED123 wrote:
Thanks Mel.  As always though with feast and ED: such great advice, but so hard to put it into practice! I think at the mo I'm just going to take it one day/week at a time and see where we end up.


This is so true CED. It is always so much easier on paper than it is in practice. One of the reasons it is good to take it just one day at a time, but when you look back a month or two you can see that things really have changed. 
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.
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melstevUK
mid73:

"! just need to learn to step back sometimes I think. Or have some responses that let her know I’m there for her but won’t get involved in endless circular discussions or ED mind games !,"

It's a question of building up a repertoire of stock phrases, I think, which you can pull out effortlessly to prevent being pulled down that path - with which we are all familiar.  'Food is your medicine' is one which has been used by many on here, for example.  'It's not negotiable' is one I have used, not necessarily just with ed but with any difficult demands from my d.  I am not by nature authoritative as a parent, but having that one little phrase saved me the effort of having to justify things when I needed a tough approach on the odd occasion.  

I really think of eds as being like the dementors in the Harry Potter stories - they will suck the life and joy out of you unless you manage to keep a sane part of you which can still display the ability to enjoy things in spite of the all-consuming anxiety that this illness brings with it.  If anything, our children need to see that we have an ability to still be happy - because underneath they know exactly what they are putting us through but are unable to fight it.  For my d the saving part of our life was our animals - which we were still able to love and laugh at - even when we were at loggerheads over food and eating.  

I still like to remind everyone who is new on here that it took eleven, maybe twelve years for my d to recover.   And if that feels scary - we didn't have FBT or good clinical support for most of it and she needed three hospitalisations.  It is just a question of persevering and showing them that you will never give up, however draining it is and however long it takes.  Feast saved her life because she would have been a revolving door patient while I waited for her to 'choose' to recover if I had put my faith in our local services.  Also, 'Help Your Teenager Beat and Eating Disorder' showed me the importance of keeping normal life going and ensuring eating was happening outside a hospital setting.  Once I understood the science behind the illness - everything fell into place and I just kept going, chipping away in whatever area I could influence at that moment in time.  She was underweight and without periods for four years and at 27 now has a baby.  Maturity and adulthood can change everything.



Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
melstevUK wrote:
 It is just a question of persevering and showing them that you will never give up, however draining it is and however long it takes.  


Mel, are you the one who taught me that, way back in the bad old days?  I know I learned that here.  Thanks.

I remember talking with my d one night, and she asked me how long I was going to be like this.  I said I will be like this as long as it takes.  D (angrily): "So are you still going to do this when I'm 50 years old?"

Me: "If that's what it takes."

She burst into tears and hugged me.

They really do need to see that we are stronger than ED and smarter than ED and more determined than ED. 

Mid73, you're right that it helps to "have some responses that let her know I’m there for her but won’t get involved in endless circular discussions or ED mind games."  It takes a while to get our sea legs and figure out what to say (and not say) to preserve our sanity.  It does get easier.  Really.

Hang in there. xx

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