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

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Francie
'If I couldn't purge I would want to kill myself' - that's what our 19-year-old d said to us last night as we talked with her about the evidence we have found of daily purging. We have locked up cereal and sugar  and other things she tends to binge on, I have food in the refrigerator that she will eat that she has been less likely in the past to purge, I work from home so can keep an eye on her that she stays out of the bathroom for 2 hours after eating but she sometimes sneaks food from the pantry and I caught her eating while in the bathroom.  She takes long baths. Also, I sometimes have to leave the house to take the dog out, retrieve the mail, etc.

I have encouraged her to eat 3 meals and 3 snacks but she has not done that since 2014, and won't eat anything I would serve her. She won't eat family meals (only on rare occasion), and then it may only be a salad and not what everyone else is eating. If I bring up eating at all she shuts me down completely. Tells me to leave her alone (or leave the room if we're in her room). If I push her - no, if I question her - about food or nutrition or eating or waiting to use the bathroom it turns into a nasty, loud argument every time.

The DBT therapist will not call us back. We had asked for a family meeting about 6 weeks ago and the one meeting we had planned was cancelled by the T and a new date has not been made. They apparently want to work it out with our D but she's so laid back. And yesterday she didn't go because she was so depressed and feeling ill. I emailed her pediatrician with an update and heard nothing back. We have asked our d repeatedly to engage with a new ED T but she refuses to do so. And the only remaining T's and psychiatrists on my insurance list will not allow me to make an appt for her since she is 19. 

My h and I are wasting all of our energy arguing with each other. I am still so very angry at him that when she relapsed at 16 he would not stand with me to insist she receive treatment instead saying 'it's up to her'. 

She is to start college next week - taking 3 classes at a commuter college close to home. My h won't pull that from her since she's so depressed he says it's the only reason she has to live. Her last social outing with her only remaining friend was in early December. Each day all she has is me, her pets, her computer, her phone, and her dad at night. She's not interested in volunteering, in getting a job. She will test for her drivers license next month only because I set the appointment after she kept dragging her feet. I thought it would be a boost for her to get it - so she'll feel more on equal footing with her peers and can live more independently.

And I know in my heart that all of this depression, anxiety and loneliness she feels would all go away if she would only eat. And I am realizing too that we were foolish to allow her to not eat meat for humanitarian reasons. She's gone without meat for years and that too, I am sure, adds to her depression and anxiety. She has gone without meat since probably 2012. 

I know this sounds like a pity party but I feel such self hatred and hatred toward my H and us together as her parents as she has been so ill served by us. 

When I look to the future I am frightened that she's going to kill herself. She is no longer recognizable as my D at times. Last night I asked her 'on a scale of 1-10, how badly do you want to give up purging?' And she answered 6 or 7. She says she's purging less now than she was in the summer. She is one who has always wanted to take the easy route. 

Does anyone know of a good general practitioner in the CT area who is good with working with ED's? My d's pediatrician has up till now been responsive but I think she's making it up as she goes along and probably can't wait till our D ages out of her care.

Francie

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HateEDwithApassion
Oh Francie,
I'm so sorry to hear this. I hear the pain, anger and stress in your words, and I can relate totally to the feelings you are having. It's particularly difficult when your child is considered an adult as well as battling the depression that is with the ED because leverage is tricky.  I think you are right to get on board with an ED T vs. pediatrician. I'm sorry I'm not in the CT area - I hope someone here responds quickly. 

I want you to know, too, that I can relate to your feelings toward your H. My H never put his head in the sand about how sick she was, but he has certainly taken a huge step back and left all of it to me because he can't deal. We are potentially in the midst of a relapse ourselves (vegetarianism for humanitarian reasons over here, too, which I totally fought against and lost) and I've had enough. My H has had enough. Men are not as strong as we are - I know that's a generalization, but not being able to fix their "little girls" is something that breaks them - at least it has for my H.

If this helps...
1- you can't change the past and you are not headed that way, so forgive yourself for anything you wish you could change. You were chosen to be your D's mom for a reason - you are the perfect person for her. You've done your very best for her. Hindsight is just that - hindsight. None of us know perfectly what to do with this darn disease, but you are still here, fighting and learning as you go. Now you know. Now I know. Now we move forward armed with the knowledge.  
2 - To come to a place where I didn't hate my H and his reaction to this, I began to look at it this way - He's not getting in my way. He's allowing us to go to DBT twice a week, dietician bi-weekly, supporting my decisions even if he isn't actively taking the burden, too. That is a blessing! If he stays out of the way and is allowing you to go to therapy and paying for it, that may be enough for now. There are other spouses who actively get in the way, and it doesn't sound like that, so I call that a praise, even if a small one. It helped me a lot in seeing my husband more kindly, too. 

I am here - you've been so kind in supporting me and encouraging me, and I will be here to do the same. We are smarter and more experienced in this, so we can do it...

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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Foodsupport_AUS
I am sorry to hear how bad things are at the moment. Things sound really distressing at home.
I am not clear at the moment who your D is seeing if anyone at the moment for treatment. It sounds like she has had some DBT but perhaps not now?

Either way I think it is important to remember that this is not her fault or yours. You did what you thought was right at the time, even if in hindsight perhaps things could have been different. Looking back can lead to sadness and regret, whereas we should be using it to help us change our future. 

Your D seems to be seriously unwell at the moment. She is therefore unlikely to be able to see things particularly clearly with regards to her illness. Getting her to more effective treatment is essential at the moment which is where using those motivational interviewing techniques come in. Trying to nudge from the sides towards changing things rather than going head on. 

D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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mjkz
Francie, I'm so sorry.  We had a major spiral down around Thanksgiving that my daughter managed to pull herself out of literally hours before being admitted.  It was truly a miracle so they can happen!!!

So what do you want to do?  Can you tell hubby that you did his way and this is where you are so now it is time to try something else?  It might be worth waiting for that driver's license. She sounds pretty sick and not so safe to be driving.  You are paying for the DBT program right?  I've found that not paying is the best way to get their attention.  Seriously if I ask for a family meeting and it got cancelled and not rescheduled, I'd be letting them know they would get paid when the meeting happens.  I'm sorry they are all enabling your daughter to stay sick.

Did she ever find another Ed program to try?

Remember all you can change is the present and the future.  Focus your energies on the things that you can change (I love the Serenity Prayer). How did she do last term in school?
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Torie
"Does anyone know of a good general practitioner in the CT area who is good with working with ED's?"

I hope someone will prove me wrong, but it seems like folks in the NE usually end up having to travel pretty far to find good help.  But it is worth it.

It sounds like your d is pretty ill and would likely benefit from a higher level of care.  I know that is hard at 19, but I think it only gets harder with each additional year.  Maybe others could suggest some treatment provider options even if they are in other parts of the country?

It makes perfect sense that you are mad mad mad at your h for successfully interfering with your instinct to ramp up your d's treatment those years ago ... and yet.  You know your anger doesn't help you, doesn't help your h or your d ... it only helps ED.  Maybe keeping that in mind will help let it go a bit?  I know this is so so so much easier said than done.  Something I'm terrible at, myself.  

I'm so sorry you and your d have to battle this beast.  So unfair.  

I hate this vile illness.

Please keep us posted and remember that we're with you in spirit. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
What's done is done and cannot be undone-that's how I would look at the past francie.you can't change it, your husband can't change it-and to focus on what was or wasn't done will kill your marriage.
There were certain things I went into this fight knowing I wouldn't sacrifice.i refused to sacrifice my marriage and I refused to sacrifice my other children on the altar of anorexia.i just could not do that-not to my husband, my other children or to my an daughter who already suffered enough.if her illness had ended my marriage, she could really have gone off the deep end.thats not to say I didn't get angry and that I don't still,from time to time,have some residual anger.but I worked through that with a therapist and this year when it got a bit much, I booked a flight and spent a few days with friends and family down south.i needed that time just for me.
When I came back although I struggled still, it was nowhere near what I had-I realised that I could go away for a few days and recharge and deal with things better upon my return.
Maybe you need some time for you.
Maybe a therapist could help.
Just...don't get too bogged down Francie.you can't shine a light for someone else if your own is all but extinguished.hugs to you,
Sotired42
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Francie
Thank you, friends. I know I am receiving the most loving advice from you all when you tell me to forgive my husband and myself. I am so appreciative on many levels. We are like-minded.

And yet I see this whole thing is very scary and I cannot believe where we are at this moment.

My h and I are really not getting along and my fault is to drag him in too much. I keep calling him at work for his help (he's better at communicating with my d when she is angry and frankly I do need a support person). And I hit him with my anger when he walks through the door. I need to change that.

We have brought up residential care but always at some time in our household someone rejects it. Me, my D, or my H. Right now it's my D and H. He doesn't want to pull college from her because it's the only thing she has to look forward to and he's afraid she'll have no reason to live if we remove that from her.

The DBT team called me yesterday and we have a family group meeting today. I have prepared a statement that my H has agreed to having me read. In it I am pointing out that the 1 therapeutic element that is missing from her program is normalized eating and adequate nutrition.

I have been attending Al Anon meetings and I found they are helpful. Their 'hands off the qualifier, take care of yourself' approach is not a perfect mesh when you are working with a YA under your roof, and when the abused substance is life-sustaining, but it is helpful to feel supported so I keep going.

And last night I took home some Al Anon literature and one of the documents has the title 'ACCEPTANCE', and the first bullet point on the paper is FORGIVE.

It is so corny to tell you that I love you but I do feel loving gratitude for each and every one of you and for Kali, who messaged me privately, and for melstev who has also messaged me and provided excellent advice on other postings. If any one of you lived on my street I would bake something for you and when I gave it to you I would hug you with tears in my eyes. I need your support. Thank you for giving it to in the most loving way you could from our great distances. XO

Francie

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Torie
Aw Francie, I'm the one who should be delivering baked goods to you.  If only we all weren't so far apart, geographically, I'd do just that.  

I understand your h's fear that taking away college would remove her best reason to live ... but even so, I think allowing my own d to go off while unwell would risk causing her death.  Literally.  I explained it to her in pretty much those terms - that I would never forgive myself if I paid good money to send her off to her death.  She knows her options are to be well enough to go to college away from home, to postpone college until that can happen, or to attend college locally.  In other words, since it's her best reason to live, it's also the best motivator for her to eat.  Have you explained this point of view to your h?  That this is the best chance you will ever have to get your d to a healthy place?  (I'm pretty sure it is.)  If you don't use this leverage now, how can you hope to help her in the future?

And have you told your h what you told us: that (even though you're still mad at him) you need him?  

I just want to give you a tray of brownies and a hug ... instead of that I'm writing you these hard things.  Ugh. Please consider yourself hugged anyway. xx

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

Ah Francie, I am so sorry things are so difficult for you now.  I hope today's family meeting helps to set you all on the road to positive changes.  I never had to deal with purging with my daughter.  I can only imagine how frustratingly angry I would be if I had to.  Be kind to yourself.  As you are probably aware treatment options in CT are limited.  Residential treatment is really only available with Center for Discovery which has sites in Fairfield County.  My d was in residential with them and credits them for much of her recovery though at the time she was very resentful for being placed in residential.  Center for Discovery has also expanded into outpatient programs - again in Fairfield County.  I have no experience with that program. 

Institute for Living in Hartford does have a PHP and outpatient program but their approach seems to be more "old school".  For outpatient treatment we utilized Walden Behavioral Health.  I believe they now have a couple of locations in various parts of CT.  They are Maudsley based.  I found them extremely helpful. 

Do you work with a psychiatrist and therapist as well?  I can give you a referral if you want to email me. 

And now for some outside advice.....I would be hesitant to have my daughter driving or in college if she were still struggling with ED.  We held off on letting my d get her driver's license until she was WR and college was contingent on her being able to take care of herself.  She is now a sophomore in college at an out of state university and is the first to admit that college is for the healthy.    Sorry.

Hang in there and keep working at it.  I assure you it is worth it.  Hugs.

Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
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Torie
 How's it going, Francie?

Thinking of you.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Francie
Hi Torie, How nice of you to ask, thank you.

We have regular family meetings with our D's DBT team, so that is great. My D has a new individual therapist, there is less purging than there was a few months ago, so that is great.  My H is more on the same page as me so that is more than great. Tonight he and I met with a therapist and he heard some things he needed to hear from someone other than me. I am involved with Al Anon to a great degree - regular meetings and daily chats/texts with a sponsor to help manage my anxiety - and that is helping to make our home life as calm, loving and as stress-free as possible to remove 1 more reason for purging.

Thank you again for checking in. I hope all is well with you and your family. XO

Francie

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Kali
Hi Francie

This news all sounds like positive steps forward...happy for you and your d. and husband.
One step at a time....

warmly

Kali
Food=Love
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Francie
Kali, Thank you. You have been so kind to me and I appreciate it. It really is a wonderful thing that my h and I are working more as a team.

I credit you mom's on the forum who all hands down gave me the good sense to support my marriage and take comfort in the fact that I have a partner in this, because I know some are not as fortunate and I can't imagine how much more difficult it is to accomplish what we are all trying to accomplish when you are going it alone. We are not perfect - but we are in a much better place than we were before.

XO


Francie

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mjkz
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It really is a wonderful thing that my h and I are working more as a team.


That is so great Francie. That sounds like it is a huge change.  You can get so much more accomplished sanely when you work as a team!!
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Torie
Thanks for the update, Francie.  So glad to hear about the many positives.

Keep swimming. xx

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

Hi Everyone,
I wanted to update to say that my d entered residential treatment on Weds to one of the Monte Nido locations. Our lives had become unmanageable with locking food, shopping daily - these measures did not make much of a dent in the bingeing/purging. Thankfully our d willingly went into treatment. It meant she had to withdraw from college. I am grateful to her therapist and dietician who helped nudge her toward this level of treatment. 

For a long time I resisted sending her to residential treatment because:

a. My h and I were in denial about how bad her ED was

b. I was afraid she'd pick up bad 'tricks' from other clients

c. I was afraid that once she came home she'd resume her old behaviors and I would be powerless to stop it. (this is still a possibility but I have been reading on the forum and am hopeful about ideas for how to make the transition at home work)

So looking at the list above, I see I need to work on my fear of this disease, and my denial of the severity of her illness/suffering. And I need to reach out to the professionals earlier because we have not been able to manage this at home.

Just wanted to update you folks. Thanks for listening! Thanks for caring! XO

Francie

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deenl
Hi France,

It is good news that she is getting the level of care she needs.

You seem to have good self awareness and now is a good time to read and think. And to be practical, plan menus, get food in the freezer, spend time with family and friends and gather your strength and courage for when she comes home.

I hope this phase of her treatment is successful.

Warm wishes

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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
Francie,I'm so glad that your d is in residential.now is a great chance for you to reconnect with your own life-for your husband and you to spend some time together and maybe also with a therapist to work through the issues that your ds illness has caused.
Like you,I felt a tremendous amount of anger and resentment towards my h because he couldn't cope and left everything to me unless forced to come to meetings and meals at the hospital.im not gonna lie,it took us a good long while to get back any real form of closeness,but I'm so glad we kept trying and that the therapist we had who specialised in helping parents and people with eating disorders ,really helped us.
Do not spend all your time trying to see your d either.we visited once during the week and once on the weekend.the first two weeks we were asked to not visit and let her settle in.it was good advice,though I can't remember if we took it.
Read books other than eating disorder books.visit places that give you peace in your heart.for me it's around water-beaches,lakes.i love garden centres.take time to rest.spend a day reading and watching crappy tv.
Look after yourself and your relationship.spend time with friends,just a coffee with one is nice.feel no guilt EVER about taking this time for you when you can.
Big hugs francie.🦋🌈🌻
Sotired42
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mjkz
Glad to read this Francie. You all have been struggling for quite awhile with this and I'm glad you were able to make a good choice in the end.  Everything you listed is a valid concern but at the same time when things aren't working at home, it becomes more dangerous to have them home than in treatment.

I think when you have live in the hell an eating disorder is for a long time, you can lose sight of when you need to stop struggling and move to a higher level of care.  All the things you do to stop them from binging and purging become just a normal day at home until someone outside of the family hears it and says hey, wow. That's not a way to live and seek more help.  The abnormal becomes so normal.
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Torie
Francie, these late teen years are the pits, eh?  A few years ago, we had so much more parental authority, and in a few more years, we will (hopefully) get an assist from the final burst of brain maturity.  But now?  So very tricky.  They are so in need of a watchful eye, and yet society thinks we should be stepping back.  So it is great that you have found more support for your d.  I look forward to reading about the progress she is making there.

Please take care of yourself.  You deserve a break. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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braveMom
Good Luck Francie!! Wishing your d gets all the help to beat this and you get some time off to recharge. 
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Francie
Thank you, everyone. I hear that my d is compliant with all meals and is doing well.
Deenl, thank you for the 'to do' list, which includes relaxing with friends and family while she's away and in good care. I am already thinking towards the future, with hope.
Sotired, I am taking a break from ED books and am now reading Stephen King's 'It'. I love a scary story.
Mjkz, when I look back at how we were trying to 'manage' her ED it all seems very abnormal and dysfunctional. I can't go back to the way it was.
Torie and Bravemom, thanks for the good wishes and the reminder to recharge. I am doing that.

I am bringing my d fresh flowers for tomorrow's multi-family group. 

Thanks again, everyone, for caring. XO

Francie

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Kali
Hi Francie

I'm so happy to hear that your daughter has agreed to go into treatment and is compliant with her meals and doing well! She is taking the first steps toward getting better and it is the best gift she could give herself even though it is difficult to be in residential treatment. With good support and all the knowledge you now have about how to help her I hope that this is the beginning of true remission from the illness for her and healing for you and your husband. 

Warmly,

Kali
Food=Love
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Francie
Hi friends,
My daughter entered residential treatment at Monte Nido Laurel Hill in Boston on August 30. On September 18, the insurance company had decided that 19 days of residential treatment was enough, and she was moved - with 1.5 hours notice to pack - to a php facility, Eating Disorder Center of Boston. She is living in supported housing there.

The day my d was moved from residential she said to me 'I'm not ready'. She has given the php a chance. My h and I visited last weekend and this weekend, and I could tell by that first weekend she was struggling. Yesterday she told my husband that her struggle was not getting easier, it was getting harder. I asked her about that later on and she said she was not following the meal plan when she was not in program (she eats at 1 meal and 1 snack a day on her own most days as per the php program. Sunday's she is completely on her own. There is a recovery coach who splits her time between the two apartments in the supported housing). We have a family therapy session by phone tomorrow at 2 p.m. We encouraged our d to tell her t that she was struggling. My d always minimizes her symptoms so we will see if she does that. I don't plan to go behind my d's back to reach out to the t beforehand. I want my d to reach out for the help and advocate for herself.

Any tips for dealing with insurance? On Sept. 15 I had gotten an inkling from insurance that Sept. 18 might be our d's last day in residential. I called their ED specialist and spoke with her for quite some time. But still they moved her on, because the insurance doc declared she was medically stable. My d's  clinicians fought to keep her in residential because clinically, she was not ready for the diminished level of care of a php.

I want to reach out to insurance again, but, the clinicians have told me to speak to them beforehand, saying that it is best if clinicians and family give the insurance company the same message. It helps the client.

Also, I was wondering if, because our d is in an out-of-network facility, if the insurance company is deciding to be a little harder on her. That if we had chosen an in-network provider, maybe they would have given her a longer time. Any thoughts on that?



Francie

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HateEDwithApassion
My D is currently in residential as well. She was approved for 30 days initially, and then they have to go back to the insurance co. and ask for more and prove their case. That is always the trickiest because if our kids are compliant, it seems they often clinically appear to be ready for the next lower level of care. We had the same thing happen going from php to iop. Disaster.

I'm guessing that an out of network provider is treated differently than in-network simply because the outlay is more expensive, and they don't have agreed upon discounts with those facilities. The cost of providing this care is astronomical when I see our EOBs. I get it, they need a lot of attention and hand holding, but wow. If our insurance wasn't covering this like they are, we would literally have to dissolve our retirement accounts to provide this care. We will not do that. I've heard too many stories of families who have and nothing changes until the child is ready to recover.

I'm so sorry that you've run into a glitch with php. That is my greatest fear too - how to replicate recovery at home with a young adult. That is why I'm lining up UCSD when she is discharged - we need a lot of help in figuring out how to do this at home when she discards her meal plan after a few days. It's so difficult.

Other families who are smarter than me will probably come along. You are amazing, Francie. 

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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