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

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peregrine_USA
The title applies to both me and my adult d.  31 years is a very long time.  I need to vent in a place that is fairly anonymous among people who understand this obnoxious and hateful eating disorder

Major hurdles to my d’s recovery have occurred since last summer:  two instances of hospitalization that resulted in her d/c because either the best hospital here noted that she is chronically  ill and needs specified treatment so would not keep her once her electrolytes were stabilized or the psychiatrists at the local psych hospital were not only unwilling to spend the time to engage w/her to help her get on the path to recovery but who also rejected the opportunity to have a consultation w/one of the world’s experts in the treatment of her complex dx; a decision by her (new and since has left the mental health agency) psychiatrist to cancel her rx to the only medication that helps her deal with anxiety and thus increased her inability to eat - thankfully the replacement finally renewed the rx a couple of weeks ago but I am frightened that it was too late because she has lost 20 pounds since August; learning that, indeed, it is the people with the means who can obtain the treatment necessary to save a person’s life - the critical care location to which she really needs to go rejects medicaid (I am pretty sure her medicaid insurance will pay annd I can tell you that in my mid70’s while continuing to provide support as I am able,  I sure as h_ll cannot afford $5,000/day for the length of time she will need to stabilize for the many reasons connected with ); learning that the one place she is willing to go will not take her because of her history there and the fact that she will need to detox first but refuses, so far, to do that.

 Needless to say, I am overwhelmingly discouraged and have been doing my very best to hold it together and to encourage others to get their family member into treatment at the very first sign of an ED.

She has asked to go to hospice several times and I have talked her out of it  and then has decided to gointo treatment and then decides not to.  She is struggling so very much and looks like a breeze will blow her away.  Hitting bottom will probably mean her death unless she collapses and we (any and all members of her team and her neighbors in her apartment complex who see her daily and have my phone number) can get her to the hospital in time.  She is very, very tired of trying and sees no way out.  I at this point am wondering if there might be reverse consequences if we move forward with the hospice option - meaning that suddenly those who have refused her treatment here will suddenly go to battle to save her.  I apologise for the obvious sarcasm and at the same time honor my d who has been living in hell for too long.

Yes, I am doing the very best to take care of myself.  My husband, therapist, and friends have been immensely supportive, as well.  

Please pray for my daughter.
Peregrine_USA
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scaredmom
Oh peregrine!
I am so upset for all that you and d have endured!
I wish I had the best words of wisdom and comfort for you. 
I send you a big hug and I wish I could bottle  up a magic potion and send it to you to take away the stress and make it better.
Big hug and I will pray for your d!
XXX
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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Ocras68
Peregrine, your post made me cry.  I will pray for you and your daughter.  I’m so sorry for the awful situation you are in.

With love.  Xx
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tina72
I have no words for all the sorrow I feel for you and your poor d. I hope she will get help soon. It is so sad to see them treated so bad by the professionals who should know it better and who should be there to help her.
I send a big pack of power for you and a huge hug across the ocean.
Please come here to vent and keep us updated. We are here for good days and for bad ones.
Keep feeding. There is light at the end of the tunnel.
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Torie
Oh my gosh, that sounds so hard.  You have been such a great and dependable warrior for your d - she is really lucky to have you.  As the others have said, I wish i have a magic potion of some sort to either help your d turn a corner or help the "professionals" understand their responsibility to her.

Hang in there.  You and your precious d deserve so much better. xx

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

So sorry to hear about your and your d's struggles with the system, you all deserve so much better. I hope things will turn around for the better. Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Foodsupport_AUS
So sorry to hear that you are struggling Peregrine. Sending you strength to push through this. I hope things can take a turn for the better.
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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deenl
Peregrine,

I know that you have strength and courage in spades but I wish I could send you a replenishing booster. So sorry that the situation is so difficult and precarious. Praying for you all and sending you a big, warm hug.

Warmest wishes,

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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peregrine_USA
Thank you everyone for your support.  One day at a time.  I will be attempting to persuade her to go into the hospital tomorrow.  She has talked about it each morning this week but by the time I get to her, she has changed her mind.  The ED is quite powerful now.
Peregrine_USA
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tina72
If possible just put her into the car and drive there. She may not have the power to decide that alone.
Keep feeding. There is light at the end of the tunnel.
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Francie
Dear Peregrine, I'm so sorry for all that is going on. I will pray for your and your precious d. Sending hugs to you as well, that things will take a turn for the better. XO

Francie

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peregrine_USA
Tina, I wish I could just put her inthe car.  The last time I tried that she attempted to get out of the car while I drove.  Among the multiple co-morbidities my daughter has is commonly called borderline personality disorder but I call it emotional dysregulation disorder.  This aspect of her disease fights anything and everything that is forced upon her so the best bet is to gently coerce her (if possible) and if that does not work to hope through listening, empathizing and validating that she will see the light and take the lead.  That happened this morning and she has been admitted.  The hurdle now will be, as always, to persuade the staff that even if she says she is “fine” to keep her anyway and if that doesn’t work (and the docs will d/c her if they hear her say this) to employ legal means to keep her there.  The last step often leads to rebellion.  It’s all a very delicate balance.
Peregrine_USA
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HopeNZ
Gosh, peregrine, that's a double whammy.  Having to 'gently coerce' someone who doesn't really believe they're ill.  I doff my hat to you, what superhuman parenting you've had to do all these years, and continue to do.  I'm so glad she's been admitted.  Crossing everything for a good outcome to this hospital stay.

Sending love 😍😍
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scaredmom
I am glad she has been admitted and I understand how this too will have its issues.
One foot in front of the other.
I hope it gets better now for you both.
XXX
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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deenl
Dear Perigrine,

I am thankful that your daughter is in a safe place for at least a little while. I had to think of a line from Sick Enough when I read your post. The place where Dr Gaudiani says that as far as she is concerned 'fine' is the four letter F word of the eating disorder world. I couldn't agree more. 

I wish there were some words that would magically help you but just know that you are in my thoughts and I am sending lots of positive vibes your way. 

Warm wishes,

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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Sotired
Hi peregrine,
how does your daughter feel about things at the moment?after this admission is over, maybe investigate hospice care for your daughter.maybe it isn’t the worst thing in the world to look into at this point.
i wish the hospital here had taken that step.instead, they did the very thing you fear/ perhaps want.they stepped in to ‘save’ my daughter.
during that time they have irreparably damaged her liver,her bladder, she is now semi paralysed and they filled her mind with poison against me.if they had done what she wanted I might have had a relationship with her til her end came.
now we have no relationship and she is still in a living hell. I start to wonder how much right we as other humans have to keep people here.if they are suffering,do we have the right to make them suffer longer? What do the doctors hope for her? She isn’t going to get well, so what are the goals for her moving forward? A peaceful remainder of her life? Trying to get her well enough to find a flat of her own with medical supervision? 
In the trenches we focus so much on the day to day it can be hard to see a week into the future, let alone a month or a year.
if she went to hospice, what does that look like? What is your local one like? Is it somewhere she could be looked after and find peace in? Would it be safe enough for her and the hospice to take over her care? What are her needs and can they be met there? 
A meeting with hospice won’t wake her up and shock her into changing, but what it could do,maybe, is alleviate your concerns.
we talk a lot about plans here, plan a,b or c. I don’t think it hurts to have a plan where hospice is involved.
i realise that my advice is different from the others.im not writing it to cause any pain, but instead to use it to look at possibilities that might alleviate it.
much love to you peregrine ❤️
Sotired42
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tina72
Hi Sotired,
thought a lot of you in the last weeks, how are you doing? Did you find time and power to do something nice for yourself and take care for your own sanity?
I think you are right, there should be a comitment what to do if the suffering is with no end. Here people have the legal right to write down in good days what they want the doctors to do when there is no hope and no chance for recovery any more (with any disease). Everyone should think about that in healthy days and write that down. It helps the family as well to decide hard things.
My dad had a bike accident in 2012 and he had such a paper and it helped us a lot when we needed to decide to stop the machines.
Doctors often do not see the single human being any more. They just keep the patient xy alive because the health system pays them for that.
I am with you in my thoughts, come around when you like to talk.
Sending a big hug across the ocean!
Keep feeding. There is light at the end of the tunnel.
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peregrine_USA
As I figured would happen, my daughter said in so many words that she was “fine” on Friday morning and so they discharged her.  Her substitute mental health provider psychiatrist apparently agreed with the psychiatrists on this so I picked her up and brought her back to her apartment.  I made certain her neighbors were aware she is back and she has food and money. 

SoTired I am going to propose to her that I take her to an excellent hospice tomorrow.  She told me that the 78 pound weight the nurse gave me was off because she was wearing her chacos that increase her weight by a pound and a half.  I imagine that by tomorrow her weight will therefore be around 75 or 76.  Her PCP is aware of where she is.  I know, and Dr. Gaudiani stresses this in her book, that this does not mean the end and that she may be able to turn herself around under their care.  While she was in the hospital, they tried to feed her every two hours with snacks and sandwiches and she declared she did not want to keep doing that any longer either.  Frankly, she may flatly refuse to stay in hospice after a couple of days, too.  We will see.  Thank you for your wisdom.

Thank you everyone.  One day at a time.
Peregrine_USA
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sk8r31
Sending you lots of virtual hugs Peregrine as you navigate this difficult time.❤
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mjkz
Peregrine, I'm looking at a similar situation with my daughter.  I don't know yet when to say when and let her make a choice.  Mine has talked a little bit with the increased weight and she wants to go to hospice.  Part of me just screams are you freaking kidding me??!  She was doing so well for so long and now she's not and doesn't want to have to climb out of this hole she is in.  I never thought I'd be facing this but like SoTired I'm not sure I have the right to keep demanding that she climb out the hole if she truly feels she has nothing to live for.  It is a very fine line.  You all are in my thoughts.
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Sotired
I honestly believe peregrine that there is no harm and it might do a lot of good to investigate the hospice option.if she then decided it’s not for her, well that’s her decision.but along with that decision are consequences.though she is very sick it does no harm to explain to her that in your eyes hospice is the last step in a long and painful journey.that hospice is about bringing her peace in her remaining time with you, it is not about a cure,but rather a chance to say goodbyes and enjoy last moments.but if she doesn’t go to hospice, or goes and then discharges herself, then she needs to find a way through to a liveable life.so hard. Might be impossible.but definitely discussion worth having.
she needs to be as aware as is possible what hospice will mean for her. 
Mjkz, I am so sorry hon. I’ve been where you are, where there is a moment of glorious hope and then it all turns to dust.in some ways it breaks us more. I’m still trying to figure out how your d and mine learn to fill their own buckets.its so hard because even though I suffer from depression and anxiety,I do know how to fill my own bucket...so how do you explain it to someone else without sounding like an arse?
tina, it has been very hard going here.my h has just had his first visit with d in months and I can already hear him wanting to change the story so he can have faith in her again.but despite my anxiety I am making sure to talk things out with him.im very very tired at the moment so am off to the doctor next week to get blood tests.my other kids are doing very well though so I’m counting my blessings.
Sotired42
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peregrine_USA
Oh, mjkz, I am so sorry.  I will be thinking of you.  Sotired,  thank you for your remarks, as well.  After thinking more about all of this, I brought my daughter a booklet distributed by one of the hospices here and directed her attention to the section on palliative care.  I have been hesitant to use the word hospice yet.  She immediately went to her dictionary to look up the word palliative and said she likes the concept.  Perhaps as Dr. Gaudiani points out, if the pressure to eat and gain weight is relaxed some, maybe a bit of breathing room will help.  Mine is adamant she does not want to be forced to eat.  Interestingly, after this conversation she asked me to take her to get a hamburger and a milkshake.  
Peregrine_USA
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tina72
Interestingly, after this conversation she asked me to take her to get a hamburger and a milkshake.  


That is great!!!
Keep feeding. There is light at the end of the tunnel.
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peregrine_USA
Well, to those who think nothing more can be done, my family member decided against all odds that she wanted to live last week.  This after confronting me and saying that as her mother I  brought her into the world, surely as her mother I would help her leave this world by arranging for her to go into hospice. I gently explained that as her mother I simply cannot do this.  I asked her to find someone else to help her and encouraged her to seek treatment as an a avenue to talk to those who are empowered here to declare it is time for nospice.

When she decided to go into the hospital, I also with my husband’s help and Excel created a chart that showed her decline since last summer when she went below 100 pounds, was discharged from the hospital anyway, went for help in October but was discharged a couple of days later after having lost 10 more pounds and then again being willing to ask for nelp but was discharged in February although she weighed under 80!  Last week she lost all hope, confronted me as I described in my first paragraph, and allowed me to take her to the ER where she had lost another 7 pounds.  
Long story short during which the doc commented she was “really skinny” but looked fine otherwise (pause for my scream here), doc asked me why doc should not d/c her and I simply said she will die if you do that, her health is extremely compromised, etc.  

Next thing I knew she had been admitted and two days later she was transferred to a special unit for the medically compromised where there is another person also struggling with an ED.  Glory be!  And, she is rallying with the support of a doc who knows his stuff and is willing to go to bat for her so she can climb back out of this pit while eating and gaining weight.  

So, as I continue to say, hang on to hope.  Who knows, after all?  Now that she has gotten a lot of rest/sleep, has been eating and slowly gaining weight, has been deprived of her chosen self-medication alternative, she is re-emerging.  So many who know her say she can get by on 2 cylinders while others need 6 or even 8.  May she proceed to at least 4 and maybe even 6.  We will see. Will she relapse?  I do not know.  I hope she will move forward.
Peregrine_USA
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Mamaroo

So, as I continue to say, hang on to hope.  Who knows, after all?  Now that she has gotten a lot of rest/sleep, has been eating and slowly gaining weight, has been deprived of her chosen self-medication alternative, she is re-emerging.  So many who know her say she can get by on 2 cylinders while others need 6 or even 8.  May she proceed to at least 4 and maybe even 6.  We will see. Will she relapse?  I do not know.  I hope she will move forward.


I hope so as well. I'm glad she is getting proper treatment now and is slowly getting back to herself. Thanks for this update. Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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