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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daddyg
2 years 2 months:
Lost everything, financially, spiritually, family, friends, and soon our home.
When do you give up.
My D is now in her 2nd residential treatment program at a new place and she does not want to gain weight, ED has settled in so strong, we were in the hospital on Christmas and through New Years until she ended up stable enough for residential treatment.
We are so discouraged, the last IOP just released her because she was there for 27 weeks and only gained 1 pound.  That cost us a fortune of copays and driving, and neglecting every other aspect of our lives including our 12 year old son.

Together my wife and I maintain such a positive, hopeful, encouraging and enthusiastic front, but for me it is just one big lie, I am so frustrated, I think treatment and medicines has just dug us deeper into a hole, everywhere we go, my D just finds fault with all the little mistakes they make, (and I validate her, and they apologize, and yes many mistakes contributed to making things worse, but like chemotherapy this isn't an exact science so I understand, and she is just so entrenched in her illness, she can't even drink water now, she almost died of dehydration last month when we brought her to the ER. 

She is so intelligent, so kind, gentle, loving when ED is not present, but at her low weight she is so stuck and miserable and has no intention of gaining.  She counts every calorie and won't even take a vitamin or Holy Communion at church.

How long, how much money and time, friends, and family do we lose, I am so angry at this disease, I do my gratitude list everyday, I practice all the positive stuff, and I am so grateful for my health, and my ability to enjoy food BUT, I can't ignore the losses, and I wonder if we are just need a new way to treat this illness.

There has to be some limitations or some other approaches to take. 

All the family holidays have been ruined since this began, this past Christmas break had to be the worst, while I try to make it normal for my 12 year old son, next month will be my AN D's 3 birthday in treatment, she turns 17 and can't wait til she's 18 so she can be free from treatment and weight gain.  OMG, 3 years of treatment wasted.  What next are there any other options?  Massage, hypnosis, the free residential Christian Residential program, the Psychology of Eating website with a retreat, I will try anything - because the traditional approach we tried with all the "specialists" in this field is failing miserably.

D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
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mjkz
Sorry things are so bad.  What are you doing at home?  What programs have you looked at?  It is criminal for a program to keep her for 27 weeks and have her gain 1 pound.  That is ridiculous and I certainly wouldn't be paying anything for that kind of treatment.
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K63
Hi daddy g I don't have any advice but thinking of you this illness sucks life from sufferers and family . Hope keeps us going we will never give up hope and with continued love and support for our children / adults we hope some day it will see them through. Getting effective treatment is seems difficult everywhere . We have been through a lot of professionals who tried but didn't help and we are starting with a new therapist next week . I will always be hoping this one will make the difference and it needs to be in tandem with full nutrition and brain healing . Hope something will turn around for your d. It's difficult to look after yourself but now when your d is in hospital try to get time for you and family without ed.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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melstevUK
daddyg,

I am utterly shocked that a programme could take your money and only get one pound weight gain.  
That facility should be named and shamed.

The truth is, your d does not want to put weight on because that is the nature of the illness.  It is no more her fault that she does not want recovery than that she became ill in the first place.

If she is critically ill and refusing to eat at home, then she needs to be back in hospital so that they can get her stabilised and eating again.

Can you get one clinician locally who understands eds enough to be a support for the family and start turning things around at home?

Unfortunately there is no gain without pain and someone needs to take a firm stand and put the structure in place to ensure that she is required to eat.  She will not want or be willing to eat until she gets more weight on.  At the moment she has no insight into her illness and what it is doing because she is too ill.  If you can get her stabilised and accepting three meals three snacks you will have a start.  If she needs ng feeding initially - so be it.

These are horrid horrid illnesses that do indeed suck life and joy out of everyone and everything.

Tell d that you and the family will no longer stand by and watch her destroy herself and watch inadequate facliities do nothing.  Get her into a place where she can come home and between you all put a plan in place to ensure regular eating and drinking and bumping up the calories every few days. 
It feels impossible but it can be done - but your d will hate you during the process.  However, you cannot allow this illness to take your home.  There is no quick fix but you can get a recovery going at home when you are confident in what you are doing.  Please believe that.  Maybe you can get a dietician to be the one support you need.


What were your d's hopes and dreams before she became ill?  You need to rekindle those dreams so that she can get back on track with her life.  She needs you to be compassionate - but also hard enough to watch her pain and suffering from the outside, and not experience it with her inside. That is the only way I can describe what needs to be done.  You have to stand outside her suffering and ensure she eats, even though she says she can't.  It is heartbreaking - but once they are on a recovery path, most children say that they don't remember in any great detail of early days coming out of the illness once they are in recovery mode.

Others will come in to offer ideas and support.

You have had an awful time and been let down by many places who should have declined to take your money.  It is time to stop that process and find someone who can support you.

Believe you can and you're halfway there.
Theodore Roosevelt.
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daddyg
I am so touched! All your responses were so comforting, this forum has been so wonderful helping me with my journey alongside This evil disease, thank you so much for letting me rant on.
D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
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Sotired
My thoughts for what they are worth.around the 18 month mark,2 year mark, I feel that you should restore some balance for your family.my own feeling is that you cannot keep putting one child over another-it breeds resentment and anger.so what does your son need?what changes can you as a family make to make sure his needs are met too?my an d is the oldest of three and my other children have some special needs so I had no choice but to make time for them around this point because they were both sliding backwards.i had kept going to the gym for myself and that helped me feel sane.i couldn't see my friends a lot but I became a pro at texting while I was waiting for appointments to start, or catching up for a quick hot chocolate when I could.i learned that I needed meds for me to cope with how this illness made me feel.they helped a lot once I got through the first six weeks.
Onto your d.like melstev I am absolutely shocked that a place would take your money and do nothing.im also a little shocked you would keep believing them though.to keep my d weight restored she spent a lot of time being Ng fed -why hasn't this been done with your d by her treatment team?you have one more year before things become much more difficult.use that year wisely.i would get whatever the equivalent is of an mha put in place.i would fight to get an Ng tube put in to get weight restoration happening.i wild make sure your d is under 1-1 supervision.wherever you put her nxt, these options have to be available.you have to do this for her until she does this for herself.it sucks and it requires a lot of fighting but it can be done.as you are in a user pays system, insist you get bang for your buck.dont put her anywhere where they don't believe in tube feeding-because it saves lives.my feeling is that without this step, you will struggle to get anywhere.
It isn't that you can't get them treated at 18 of course ,just that it is much much harder.so this is the time to do as much practical stuff-fighting for the right treatment as you can .
Weirdly once I had a plan of how to fight and went through with it,I had more time.then I could also spend better time where I wasn't always worrying about my d ,with my other kids.
TL;DR-get your d at a place where Ng can be fed under section. if necessary by Ng feeding under watch.get meds for yourself if they will help.make time for a coffeee a week with a friend.spend time with your son doing something he likes.if you are going to fight, fight for the next thing that works.good luck

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Sotired42
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Torie
Hi daddyg - So sorry for the terrible journey Ed has dragged your family through.

It sounds like your d really needs top notch care especially since, as you say, time is limited until she turns 18.  Many forum members have had to choose facilities far from home in order to get the best care - ERC Denver, Verritas (sp?), UCSD come to mind - if you don't mind telling us what part of the country you are in, others can chime in with good options that might be closer to home.

I can hear the sadness and frustration in your post.  The only way to get past that, I think, is to find a much better professional team.  Your d deserves that, and so do you and the rest of your family.  Others have mentioned that the top facilities are helpful when people call to inquire - if they can't help your d, they can sometimes suggest another place that would be a better fit.

Please keep us posted.

Hang in there. xx

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