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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Sotired
This is a hard thing to write about here.but tonight I have to.
My d has been very sick for a long time,first with anorexia,then gastroparesis.she now also has epilepsy.
She is tired.beyond tired.she is in unbelievable pain.she has nearly died too many times for me to even remember at this point.finally she has made the decision to cease all medical intervention other than morphine for the pain.
HOWEVER.
The hospital,who as those of you who have followed our story know,have hated providing any treatment for my daughter,who have had to have their hand forced every step of the way -ng tube, nj tube, ng/nj tube, refusal to treat at the hospital, sending her home barely conscious until I put my foot down,etc etc...
The hospital have now decided they want to treat her.
Yes,it turns out that if you want to get your adult child treated you just need to start end of life proceedings.all of a sudden all the things I begged to happen have been offered.
But here’s the thing.its too late.nothing they are offering is going to give her any quality of life.currently she is in hospital with a picc line,because her veins are unusable in her arms and legs.yes,I had to fight for the picc line.then it got infected,she got blamed and so now they’ve put casts on her arms so she can’t”infect the line🙄” again.she can’t empty her own bladder so has a catheter.she has a pain pump and constant morphine.she has an ng and nj tube.the picc line she currently has replaces the infected one.
She can’t walk,she can’t use her arms because of the casts,she can’t even pee.she can’t wash herself -I go in and do that and wash her hair,shave her legs and armpits ,change her undies...she has no dignity afforded her at this point.
The hospital won’t release her until she finishes the antibiotics and are saying she can’t come home with a catheter.
We just want them to respect her wishes.she is 20 years old, of sound mind and her life is utter crap.the law is clear that she can cease all medical treatment.despite this the hospital has tried very hard to cowe all of us into submission.so here the fight continues but in a very different direction to what it used to.
We are very sad that this is happening,but we fully support d in this decision.this is no life for her.
It’s the hardest decision,but no one should be expected to live like this.
Sotired42
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Kali
Dear SoTired,

My heart is breaking for you and for your daughter. I want to send you words of comfort and strength but hardly know where to start. Just know that others are thinking of you and sending love. I wish there was more we could do.

You have done everything possible to help your daughter. 

Love,

Kali


Food=Love
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Torie
Oh no.  I cannot  believe the freaking unfairness of this whole journey, Sotired.  I have no idea what to say.  I hope it gives you great comfort to know that you have walked the extra mile for your d and then another extra mile so many times that you have circled the globe for her.  She is so very lucky to have been dealt you for a mum.

I will keep you close in my thoughts during this oh so difficult time.

Love, xx

Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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kazi67
Sotired
I cannot begin to imagine the pain your precious d, you and your family are going through right now
Please know you are in my thoughts
Sending love and strength xx
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Foodsupport_AUS
I am so sorry to hear your news. 

Thinking of you. 
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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sk8r31
So terribly sorry to hear this heartbreaking news.  Sending love & warm support to you at 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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jcutch
I'm so sorry and will keep you, your daughter, and family in my prayers.
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teecee
Sotired you are in my thoughts and prayers. It’s difficult to comprehend this cruel world sometimes. Much love to you at this time. Xxxx
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Mamaroo
I'm typing this through my tears. Sorry to hear this. You've done so much for your daughter, while she suffers through so much. My thoughts and prayers are with you all. Sending you lots of virtual 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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Hibiscus
My heart cries for you and your d. I have no other words than to send love to you both.
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ValentinaGermania
Sotired, it is so sad. You have done more than a human being can do. You can only give her all your love now.
I am with you in my thoughts all day.
Tina72
Keep feeding. There is light at the end of the tunnel.
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clem
sotired,

My heart breaks for you. You have tried absolutely everything (and more) for your daughter and agree with others, all you can give her now is your unconditional love. I am visiting my local cathedral today to light a candle for my sister, I will light one for your beautiful D and your family. You are in my thoughts and prayers.

clem x
D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
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LauraCollins_US
Sending support, courage, and caring!
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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eternalhope
Dear Sotired, I am so saddened to read this news. I think about you all often. Thank you for sharing your story and for showing us how to get through the day despite terrible hardships and challenges. Life can be so unfair. But your love and dedication to your daughter and family is an inspiration. I will continue to pray for you all and God Bless.
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Tali97
Dear SoTired,

 So heartbreaking that things have come to this for your daughter and your family. Hoping that your daughter gets compassionate care from now on. Sending support, strength, and courage.
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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mid73
I’ve been following your posts for around 2 years since I came upon this forum. I’m so very very sorry. Your resilience and sheer determination has been an inspiration to me and I am sure to many others. Thinking of you, your D and your family. X
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NELLY_UK
Dear Sotired,
I have no words , I just send you all my love and strength for you, your family and especially your beautiful D.
Nelly ((()))
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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peregrine_USA
Dear SoTired - I am so very sorry to read your note.  Sending you love, comfort, strength and compassion as you travel this part of the journey in support of your beloved daughter.   
Peregrine_USA
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deenl
Hi sotired,

I read your note with sorrow yesterday and have been mulling over how to find the right words. But of course sometimes life sucks so bad that there just aren't any. Sometimes the form of illness someone gets is just too much and they are just too vulnerable to complications. I'm so sorry.

For what it's worth I want you to know how much I admire your courage and your determination to balance the needs of all your kids. I wish you all continued courage and hoping you get the care you need.

With warmth and a big virtual hug,

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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HateEDwithApassion

Sotired,


No words can express the sadness I feel for you and your D. You have given of yourself to all of us here, sharing wisdom and encouragement with us, while also dealing with an impossibly horrific situation. You are a superhero in fighting for your D.

Lifting you up in thoughts and prayers.

19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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melstevUK
SoTired,

Your d's story has and is so heartbreaking and you have fought so hard for so long.  

Sending loving wishes for a peaceful and compassionate outcome.  You have all suffered so much, alleviating d's suffering needs to be the aim for everyone.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Francie
Dear SoTired, sending warm thoughts and prayers to you. You are an inspiration to show all that a carer can be and can do for your child in the face of this illness. Your love for your daughter is amazingly strong and accepting, and she certainly knows it. XO

Francie

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iHateED
I have no words, just tears of sadness, for you and your family.  I am so sorry for all that you have been through.  This illness can be so unfair but even through it all your strength and courage have inspired many others on here.  Sending love and prayers to all of you now. 
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HopeNZ
I wish there was something we could say to comfort you, Sotired. You've fought so hard for so long and been so generous in sharing your journey here with us. I hope you, your family and your d are finally receiving support and compassion. Sending wishes for a comfortable and peaceful outcome.
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Enn
So so sad. You and your d and family are in my thoughts. I wish you all the peace you all deserve.
XXX
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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