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daddyg

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Reply with quote  #1 
Day 8 still all on our own, vitals checked this morning and okay, but D continuing to increase the restriction, the delays, the agonizing.  We do everything wrong, she is so rigid, restrictive, 8 weeks residential without any weight gain, she's petrified of going back to in-patient, she was there on Christmas and avoided the NG tube by 5 minutes, and is petrified of it, but loves to play right to the edge especially now that we don't have that threat.  She has played us for the last 8 days, and ED wears us down to bone.  She had her vitals checked this morning, and all okay, she knows how to stay just below the radar, and went home and refused to finish morning snack, drink, and another drink, and dinner was looking impossible.  My patience was running thin, she would restrict and delay every chance she got, I already missed 7 days of work this year because of it, and NO END IN SIGHT, and my wife is not working.  There was no way I was going to try and bring her to hospital so I called 911 and she was pissed, 6:30 in the ambulance, 1 beverage at hospital, does not qualify for in-patient, 1:30 back home and ate nothing since 6PM  I am pissed, and can't take it anymore.

I really wanted to work this at home, she was finally sleeping good, emotions in check, but we have no leverage to enforce the eating, we are trying to get some at home help with EDRS, and her have taken her to psychiatrist, and specialist, but everyone is saying back to residential. 

I wish I could hire someone for 20 hours a week to help with the enforcement, she is so compliant around others, when the police showed up she made us to be the problem, and drank in front of them which we have been begging for all day.

No PHP will take her, I think we can start the week long program on March 12 in Ohio, but I doubt we can survive that long. 

27 months, I refuse to let this destroy what little we have left, I have a good job and great health insurance but not for long, and I was in good health and now I'm not sleeping, house is a mess, my son is totally detached, and bills mounting, when is enough enough?

Residential possibilities were looking at now; Monte Nido in Portland ME, CEDC in Cambridge MA, and Klarman in Boston, MA  She was at CEDC twice already.

I wish there was more support for home, too bad there wasn't some kind of co-op, I'd go to your house if you come to my house for a few hours just to change it up.  And when we do get through this, if I'm still alive, maybe I will start a co-op like that, we need an UBER for at home care, no credentials, just tough love, patience, and perseverance!

3:32 AM hope I can sleep and hoping for a better day tomorrow.  My son was excited about getting his Nintendo Switch which comes out today, but now he's worried that will be cancelled like everything else in his life.  THIS DISEASE SUCKS AND NOW ITS WAR ON IT, I JUST NEED TO FIND THE RIGHT WARRIORS.

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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.
Sotired

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Reply with quote  #2 
You may have to in a sense let the restriction happen long enough to get what your d needs-an NG tube and 1-1 supervision so she cannot pull the tube out or interfere with it.please don't be afraid of it-I can assure you that it's a life saver for both your d and for you.
I can't emphasise enough that it doesn't matter how nutrition gets in, only that it does.only send her to a programme that offers Ng feeding under 1-1 supervision.when your d has some kilos on her-that is the time for trying again at home with a contract firmly in place.
I feel for your son ,I know that my ds siblings were affected greatly,even though we desperately tried to keep some stuff in place for them.if the plan was to buy the Nintendo switch tomorrow then stick with that.its a short time that he gets to feel special,and our non ed kids need that so much.
Maybe the next step has to be tube feeding.its not a fail, it's a weapon in the fight.
I'm sorry that it's sucking so badly right now.we have been where you are and I know how much it hurts.that said, find a place that does either Ng or bolus feeding and show anorexia you will not be beaten.

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melstevUK

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Reply with quote  #3 
daddyg,

I can understand why you are reluctant to send her to residential when the last placement achieved so little but at this stage I think she needs to be back in to get some weight on - if you can ensure she goes somewhere this will happen then it will be fine.

Her illness is too entrenched at the moment and if she gets some weight on and others 'break the back' of the illness by getting her accepting of a routine of eating regular meals and snacks, then you will be able to take her back home with the understanding that she follows that routine at home.

Right now your own health is going downhill and you cannot afford for that to happen.

I hope the US parents will chime in to suggest the best facilities - we have to do what works and refeeding at home is not happening, to the detriment of the whole family, so please, please give residential another go.

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Kali

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Reply with quote  #4 
Hi Daddyg

I does sound like she will need to go back to residential and perhaps be ng fed if she still is not able to eat. If she is not able to eat at home then she cannot stay at home. The food has to go in. You tried but if it isn't going to work then send her to residential, preferably, like SoTired says, somewhere where they will tube feed if she doesn't gain weight in treatment. And if she begs to come home after she gets to residential, my advice is not to listen to that and tell her no. So if you are deciding between MN and Klarman, will they both tube feed if she doesn't gain? Have you asked them? That might be the deciding factor.

My other advice is don't send her back to Cambridge if she has already been there twice. 

But first things first. Every day is a new chance. Focus on the food today and see what you and your wife can get d. to eat, and buy your son his Nintendo switch today! And solidify plans for residential.

How quickly can you make the arrangements to get her back into residential? I know you mentioned you had called Columbia; what did they say? The advantage there is that since they don't go through insurance they can keep her there for as long as she really needs to be there, instead of being released when the insurance company says she has been there long enough. 

Try to take care of yourself after d. goes back to residential because you will need to be strong to manage what lies ahead.

Kali



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Torie

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Reply with quote  #5 
Oh dang, I'm so very sorry for all this vile illness has done - is doing, will do - to you, your d, and the rest of your family.  Sucks so much.  I only have a minute now, so I apologize if this is curt:

Quote:
Originally Posted by daddyg
Residential possibilities were looking at now; Monte Nido in Portland ME, CEDC in Cambridge MA, and Klarman in Boston, MA  She was at CEDC twice already.
 

I agree with Kali that it would be much better to take her someplace new rather than a place that already hasn't worked for her.  Really, she needs - you need for her to have - top quality care.

There is a members only page on the forum where you can read about providers.  If you can't find it, someone can post a link.

I strongly suggest you pick from the list of top-quality providers rather than the list of places in your part of the country.  I hope you will call Kartini, ERC Denver, Veritas, etc. and see if they would be a fit.  

Hang in there.  All my best to your wife, too.

-Torie

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

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Reply with quote  #6 
My heart goes out to you.  I can hear the despair in your post.

I think it is good news that you can start the week long program in Ohio (Center for Balanced Living) on March 12.  I know that's still 9 days away . . . But it is a highly regarded program with proven results.  And they are using current research and paradigms to treat patients and support families.  And they have connections to other resources.  

In the meantime - post every day.  People here understand.  It is hell to get out of bed in the morning knowing the day will only bring new conflict and continued misery.  It is hell to know that no matter what you do relief is far in the distance.  You are NOT ". . .do(ing) everything wrong . . ."  You are doing the only things you can do - fighting the fight w/ED on the front lines every day while seeking effective support.

Keep going.  


K63

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Reply with quote  #7 
Hi daddyg, I hear how awful it is for you and family right now we were there 2 1/2 years ago and we tried so hard I took time off work to be with my d but she restricted so much and finally needed ip . We had very few choices here for admission but it saved my d . She is still struggling at times but has come a long way. I would agree that I would not be taking her back to the same place that she has been to twice already if that is possible. Sometimes after a very difficult day the next day might not be so bad. Sit with her for each meal and be there to support her that's all you can do . This is a horrible illness . Try to get some breaks between my husband and myself we took time out so that we were able to remain somewhat calm its so important but so so difficult. Hope you will sort a bed for her soon. Thinking of you .
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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. 
Francie

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Reply with quote  #8 
Hi Daddyg,
Hang in there. Give yourself a little time to think and relax. Practice some mindfulness. I know easier said than done. Is there someone you know, a family member or friend who can spell you and your wife for a few hours? You mention d behaves more compliantly for others than she is for you. You've got this even though you don't think you do.

Here are some links for you from this forum:
Children's Hospital of Philadelphia: http://www.aroundthedinnertable.org/post/chop-philadelphia-pa-dr-peebles-and-her-team-6935200?pid=1294868603#gsc.tab=0

Walden and Klarman in Mass: http://www.aroundthedinnertable.org/post/walden-behavioral-care-5476409?pid=1287042198#gsc.tab=0  

Thinking of you and your family. XO

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Francie

AUSSIEedfamily

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Reply with quote  #9 
Dear daddyg,

Thoughts are with you.

One of the things that helped me heaps when our D's behaviours were really difficult was to look at the behaviours as those driven by the ed & her personallity & characature taken over by the ed & that our real D was in there somewhere wainting for us to help her find her way out of the maze.

While my teenage years were a bit messed around by my dad's alcoholism Alateen's & Alanon's efforts to teach me separation of my father from the illness impacting has given me a bonus strategy to help me with my own child's fight against an ed.

In doing my separation I would keep my darling D's own real persona & characture alive while I did the work needed to rid her of the illness. I did not give the ed any persona & or characture of its own but just the name my daughter called it tricksy. I could then easily fight tricksy without any fear or favour & without any personal hurt & without any feeling or empathy. All the love, feeling & empathy I had was then kept & given to my real D whenever she had an opportunity to sneak out from under tricksy's influence & control. Gradually as our D was helped to learn how to over power tricksy for herself I needed less of the skills of separation I had learnt 50 years ago.

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Kali

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Reply with quote  #10 
Daddyg,

Please try to remember:

It will get better. You WILL get your daughter back again.
It is not her fault. She did not ask for this or choose it. 
You and your wife are doing the best you can in a heartbreaking situation.
Your real daughter is in there and she needs you to rescue her from this illness.

Once your d. goes back to residential, Can you find ways to take care of yourself even though it is difficult, because it will help everyone in your family. We also had really helpful family therapy while d. was in residential so if that is an option can you take advantage of that?

Can you also find a therapist to work with - just you and your wife, not with your d. to help you cope with this?

I worked for awhile with a therapist who had an extensive background working with ED patients and FBT training, and it was very helpful because she really understood the illness.
She was able to coach me in the best ways to feed my d. and to alleviate some of my stress.
When the house got to be too much of a mess I got someone to come in every other week and do the cleaning because I had more important things to do; saving my beloved daughter's life. I also have to work; it is a lot to juggle but I know you will be able to find the strength to continue.

You are doing hero's work.
We have all felt the same pain and frustration you are feeling now.
I had a really hard time in the beginning wrapping my head around why my beautiful, bright, amazing, kind, d. wouldn't. just. f****ing. eat.

Let us know how it goes. We are here to help and support you in any way that we can.

Kali




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mjkz

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Reply with quote  #11 
daddyg-if you are signed up for the week of the 12th, I'd say go and let them evaluate your daughter.  Sending her to where she has been before will be of no use since they haven't been able to help yet.  Keep sending her to the hospital via the ER 24 hours with no fluids and 48 with no food.  Get her monitored often to keep her as stable as possible.  Keep trying to get food into her.  She might say she is petrified of inpatient but if that is what it takes to get her to eat, then don't hesitate.  Just don't limit your choices by your state because you have no good options near you.  If your wife is already not working, then have her go with your daughter to a place that can help even if it is far away.  Columbia is a great option.  ERC is great.  Veritas has a good reputation. Kartini also.

In the meantime take care of you and the rest of your family.  You can't help her by getting sick.
Foodsupport_AUS

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Reply with quote  #12 
I am so sorry that things seem to be getting worse. I can hear your frustration and desperation for things to change.  As others have said, it seems evident that your D does need more care than is able to be managed at home. It also sounds like no amount of motivation is going to help your D eat. She can eat to avoid consequences though,so that is what is required. Her eating disorder at this point needs to be given no choice about eating. There are number of excellent centres available to you, and as you have said you have great insurance I would be looking at those first. If Ohio is accessible to you have you contacted them already to see if things would be suitable for your D? I know they require medical stability for the five day program, and perhaps she would need it as a stepping stone to home rather than first off. It certainly may be necessary to look out of state for your D, so long as your insurance covers you it is all worth considering. 
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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.
daddyg

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Reply with quote  #13 
This disease takes advantage of any and every weakness in the system. Now were down 3 pounds and exhausted, but she's back in residential treatment with many lessons learned.
We have to focus on what we have and what good comes out of every up step backwards. I am going to post lessons learned later today, for now I can breath and plan the next steps,

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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.
Torie

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Reply with quote  #14 
Oh dang, this vile illness is the worst.  Just the worst.  

I hope you and your wife and rest of the family will have a chance to rest and regroup a bit with her in residential.   I wonder, though, where she is exactly - which facility?  It sounds like she really needs a top-notch team as the whole family has already been worn down and finances drained with sub-par "professional" help - as you put it so well, "This disease takes advantage of any and every weakness in the system."  Many here have found that their d dragged along for years from treatment to treatment and only improved when finally attending one of the few top centers in the country.

So sorry to keep harping on this, but there is such a huge difference among residential treatment providers.

Hang in there. 

-Torie

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

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Reply with quote  #15 
Thanks for all the residential suggestions, our D has returned to the place we took her out of, just because it was the quickest easiest place given her decline in weight.  And hopefully we all learned a few things and come back with a new attack.

However, lesson learned, I have to have lots of back-up plans ready to go, I have done preliminary intakes for both Klarman Eating Disorder Center in Belmont, MA, and the Eating Recovery Center in Denver, CO.  And looking at Veritas.

For today, everything is ok, finally a weekend I can relax and recharge, got a new book recommended here, Caring for a Loved One with an Eating Disorder by Janet Treasure - I love it.  I also downloaded the relapse prevention document from this site and it looks great, got to read it more.

My D knows it's up to her to embrace the treatment and make it work, she has a new counselor assigned and hopefully this works. 

As for the next phase our original at home plan was great, but a little too premature, and next time we will have scheduled appointments with PCP, nutritionist, and therapist in place for at least 2 weeks.  And my Blue Cross insurance has approved more than one therapy session per week, I found out my insurance is great, they have approved a longer stay in residential and even provided us a specialist who helps us get treatment in place, and she calls back to see how it's going!


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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.
Kali

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Reply with quote  #16 
DaddyG,

It is good that your d. is back in treatment.
Since she is getting treatment in the Boston area I just wanted to mention (this is down the road for outpatient treatment when she is ready to be at home and has weight restored and needs an outpatient team) that Boston Children's Hospital has an eating disorder outpatient department.

http://www.childrenshospital.org/centers-and-services/eating-disorders-program

They can provide a nutritionist and md who treats patients with an ED, as well as a therapist and because they are all there they can communicate easily regarding the patient.
They can do evaluations and recommendations as well. They have professionals trained in FBT.
They take insurance. 

Let us know how she progresses!
Remember things WILL get better.

Kali




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berry75

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Reply with quote  #17 
So sorry things are so hard for you right now.This illness plays at all of our concerns.We worry about our Ed child,how it is affecting our other children.Will we keep our jobs,which we desperately need to help pay for the expensive long term care our children will need.We worry about how it is affecting our marriage and relationships.The worry at time seems relentless.The only thing that got me through the times where i felt frustrated and started having anxiety myself was empathy for my girl.I kept thinking how hard it must be for her to worry about every meal.How hard it must be, to not be able to sit down and enjoy a meal.I hate how much ed has taken from her.We are currently experiencing a relapse with some weight loss.This illness is exhausting,this forum is amazing for great advice and sometimes just a good venting session.
berry75

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Reply with quote  #18 
I did read daddyg mentioned a relapse prevention document that can be downloaded.Is there a link or some advice as to where to access this on the forum.😊
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