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

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deetz
I've only posted on here periodically and I thank you all for your responses and support. We have been going through the treatment hell for the past 2 and a half years, and it's still the same #@%# different day. We got here WR plus last spring and summer, so the drs pushed me to back off her supplements then. We stayed steady, but there's been a steady decline throughout the school year. Now she's lost again (not life threatening, 2kgs), and I'm back to fighting her on everything, because she flat out says she "won't" gain anymore weight, which obviously she needs. I know we've got leverage, which we're using, but she won't do anything to help herself. Therapists we'vwe tried have been useless, so has art therapy. Her best therapy is her job working at a doggie daycare and her one day a week working with dog adoption. We can't get a dog ourselves, I'm highly allergic and to be honest, I can't take trying to keep another living thing alive right now. Plus, she acts so horrible, why should she be rewarded when she's putting the whole family through hell.

We let her go back to dance (through the doctor's urging to help her feel "normal", I didn't want to do it) and I have grown to absolutely despise it. I don't think she loves it as much as she says (she's fine with two classes a week and no other practice), and I'm sure she prefers working with her dogs, but any suggestion we make about that is met with complete ugly resistance. I'm supposed to fake enthusiasm for these competitions and I just can't do it anymore. I'm tired of being EDs verbal punching bag. I'm tired of dragging her to health and fighting her sabotage all the way. I know if I stopped, she'd go right back to where she was. She has said she can't wait until she's 18 so she can leave and do what she wants (which would be funny if it wasn't so sad, she has no money management skills whatsoever.) I have no patience and compassion for her any more. This ED is a cancer on our family and I want it gone!

I know there are other options. We've looked at the Center for Balanced Living 5 day intensive (like the ones in California, but closer to us), so that's out there. But again, I have so much anger and ressentment towards her for all that she's done to our family, especially her brothers, that it infuriates me to have to do that and leave her brothers for 5 days, when she most likely will not engage in anything, since she doesn't have the problem, we do. She has no friends (I think she's on the spectrum, but we decided testing for her would probably only make things worse since she's such a negative person to begin with). 

I'm working on getting someone for me to go talk to, since I'm not dealing with this at all well anymore. And before it's suggested, I will not go on medications. I don't do well on them and it doesn't make this go away. I don't want to do this anymore, and now I've got to work on getting her weight up again. I can't stand my child anymore and I don't want to be around her. This has been so hard on our family and marriage and it seems like there's no end in sight. Ive put up with so much bullying and abuse by this ED, and I've stood up to it, but I'm sick of it. If she showed even a little that she's trying and wants to do better, I would be all behind it, but she doesn't, and I can't keep swimming against the tide.

No need for any suggestions, I just really really needed to vent. Sorry for the long post.
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scaredmom
I am glad you are here venting . And no I won’t  make any suggestions
I just want to say to you that you are not alone.
it sucks it hurts us in so many ways. Yes it affects our other kids and marriages and makes us feel so mad and sad. How could we go through something like that an not be upset. 
I do hope the program you may attend is a new beginning, a fresh start. 
I am glad you are getting someone to talk to. Carer burn out and PTSD is common for us. 
Never feel sorry for the long post, because we get it and we want to support you any way you need. 🤗
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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debra18
I am very sorry that you are in this situation. It sounds like professionals let you down by telling you to cut back on calories. Do some things to take care of yourself and things you enjoy so you will have the strength to continue .
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tina72
Deetz, I understand your rant totally. It is hard. It is exhausting. It is so hard to love them when they give nothing back.
I read that you do not ask for suggestions but I also feel you are here to hear some. I think you already know what has gone wrong last year. The professionals did not help you asking you to cut back in a state were you were just a few months away from recovery. I think it was Ellesmum that said here "you would not take speed down just in face of the finish line at a run". That is what they asked you to do and therefor your d did not cross that finish line. It was not your fault.
Cutting back calories or taking back supervision too early is the most common "mistake" I saw here in the last 2 years (and with many families I have contact to in Germany). You are for sure not alone with that.
It is always the same. The "professionals" make decisions and we need to live with the consequeces. It is sad and sooo unnecessary.

But: there is still hope that she can cross that finish line with better help. And that would mean that recovery could start then. And that would mean that you could get your "old" d back. That would not take away all that has happened. But it would maybe give you the chance for a new start. And heading against her 18th birthday and the possibility that you might lose her totally then when she refuses further treatment, wouldn´t that be worth a try?

Maybe it is lost time. Maybe you will leave your boys for nothing.
But there is a little chance that this 5 day program brings a change. It did in many cases here. And maybe this change would be worth that risk. You will not know that until you tried it.

You need to decide that. We cannot tell you what to do and we do not want to. I just want to make you see that it is not her fault either that the professionals did the wrong decision last year and kept her from crossing that finish line.

And please get help for yourself and do something nice for you and the rest of the family. It is really necessary. You need to put your oxygene mask on first. I did not go for medication, too, I understand why you refuse that, but often a good sleep with some plant meds, a nap after lunch or a bath or a coffee with a friend are better than all chemicals.

And please come back here. Talking to others in that situation helps. Even if they cannot help with new ideas. It helps just to be able to get rid of all that anger and frustration.
We are all with you in spirit.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
Deetz I hear you loud and clear,  I feel I’m constantly fighting for d to have permission to keep going while our team wanted to pull back.

its exhausting, relentless and bewildering and to be able to have a rant and get it off our chest is really important, I think we all need a safe space to be able to vent our frustrations.   I sympathise totally x
Ellesmum
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sunny6
I understand your frustration.  This is not easy.  Your post has a lot of similarities to others on the board.  I rant for a day and cry and then remind myself to look for the small pieces of improvement.  For our child, they are there.  There are still big obstacles for them, but the recovery from it is happening, just not at the pace everyone else seems to describe or guide us on. And while our teams all gave us timelines that meant absolutley nothing to our child's timeline of recovery and reading the stories of children who were back to their old selves months after wr can be uplifting, it is hard when that is not what is happening with your child and their illness.  We are slowly coming to terms that for our child, this is a long walk of routine for years before we hopefully will see the illness in control and our beautiful child living the life they had dreamed about.

I can't give you a magical answer, but I can tell you that you are not alone.  I remind myself that while this is hard for me, my child fights this demon every day.  I reflect back on the tears for an hour over a glass of water or the shaking hands to feed themselves, and watch now as they can eat food when asked (although the verbal assault is still present at some meals), it is progress and they are fighting the illness.

Try to spend some time with your other kids.  Ten minutes of mom smiling and talking goes a long ways.  After an explosive episode, I try to check in with them and let them know that their sibling is having a difficult day and we are doing what we can to help get them better. I ask if they have questions or want to talk about it and then we let it be.
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Yogi13
deetz,

While we all share something in common, or stories are different.  One thing I can tell you fro certain is that self care is integral.  I highly recommend therapy (I participate weekly for ME in addition to FBT for my family),  and do something you like (walk, yoga (highly recommend), meditate, read, dinner with a friend, or one of your boys- but do SOMETHING that ignites your soul).  Self preservation is also part of this journey, but like I said before, I am not walking in your shoes.  

With much healing and love,
Yogi13
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tp7
deetz, 

I can relate so much to how you feel.  In fact, I was just about to write a very similar post to yours (along with all the same feelings of frustration) but you managed to put into words exactly how I'm feeling right now so I will instead let you know that you're not alone and we're all here if you ever need to vent.

My 13d also acts horrible most of the time, and she won't do anything to help herself either.  In fact, we just had a talk with her current PHP therapist where she told us that the entire PHP team had a discussion about our d and they feel "stuck" because she hasn't made any progress and they've done just about everything they can think of to make her want progress but she doesn't seem to want it.  They called her "a very complex case" and floated the idea of residential treatment for her. The only problem is that there aren't many (or any) places that cater not just to the ED but also to all of the other issues like anxiety, OCD, and huge levels of oppositionality. 

In the meantime, our entire family is also being put through hell.  My husband is a cancer patient  (who thankfully isn't in the middle of treatment right now) and we haven't had any time to focus on him.  My 9 year-old son just had a complete breakdown himself tonight as a result of the constant high stress levels in our home. The verbal abuse is never-ending. She refuses to see any friends and now says that she has no friends. The only thing she seems to care about is our cat.  We also wonder if our d is on the spectrum.   My husband and I are trying so, so hard to help her and yet the ED seems to be playing games with us all the time and trying to manipulate us. She tells me every single day that she hates me, she'll call me all sorts of names, and she has become extremely oppositional about everything and anything.  During our lowest points I have actually told her that I don't want her to live at home anymore and that she would be better at a residential treatment facility.  She was already at IP for a month, and although they did save her life by forcing her to eat she was also a complete emotional wreck when she came out of there.  The whole experience was very traumatizing for her, and she became hell-bent on wrecking her life after she got out and she is still determined to do so at any cost.  Constantly trying (and often failing) to stop her has been extremely exhausting and I also fear at times that my compassion is being replaced by anger and resentment. My marriage, my relationship with my son and my career have suffered tremendously.  And I sometimes wonder what for, given that my d refuses to do the most basic things to help herself. 

And yet - although I may not know what the future holds I know that every day I have the choice to either keep trying or to give up.  And I know that no matter how I may be feeling, giving up isn't an option.  So I try to put the previous day behind me and start again fresh every day.   Not to say that it's easy, sometimes it's only 8am and I'm already ready to be done with the day!  But I know that in the end we have to keep putting one foot in front of the other and just keep trying to figure out how to beat this ED monster and somehow keep my sanity at the same time.
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sandie
I feel your despair deetz and of others above. Maybe we should all have a virtual group hug. Sending positive vibes your way. X
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kazi67
When I found it impossible to seperate my d from the ED
my therapist said to write down all the things I loved about my d ie:caring, funny, considerate, loyal, trustworthy, hardworking etc
and on another page all the ED traits ie: the lies, selfishness, moody etc

then I could see my d again when no longer could see her at all and I didn’t t even want to visit her in hospital as I felt all of our hard work, money and tears was for nothing she had completely taken everything from me there was nothing left of me to give I felt defeated and hopeless and at a loss that she would EVER get better (only once I did that activity I could see ED had taken it all)

this REALLY helped me and possibly could help you, then I  could hate the ED not my D
❤️
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HopeNZ
Hey deetz

There's been a kind of long, slow heart break going on in our house for the last year or so too.  My now 16yr old d was wr plus, this time last year.  It was the usual horrific nightmare to get her to that point.  We waited with open hearts for our lovely d to come back to us, as so many seemed to have experienced on this forum.  Instead, adolescence set in.  With a vengeance.  There was no loving reconciliation, no healing in our relationships.  My poor son, her younger brother, said recently that he preferred it when she was sick because then at least he knew the cutting words and casual cruelties were not her but ed.  So my husband and I launched into dealing with her teenagehood at a low ebb and we haven't done a great job of it.  And like your d she's not maintaining her weight, and utterly refuses to allow us or anyone else to help her.  She refuses help from our lovely and very competent therapist but won't do it herself.  Hubby and I feel as if, in order to survive ourselves, and have any chance of a future relationship with her we have to sort of put our feelings on hold and go through the motions with her, much like the compassionate detachment (running very low on compassion but just about managing the detachment!) we tried during refeeding.  

It's so sad.  Sending you hugs ((())).
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Kali
Deetz I think that it is natural to feel anger. You are allowed to be angry. The eating disorder comes and turns our lives upside down and all the rules change overnight. And we suddenly have a child with a life threatening illness who seems to do everything in their power to stay ill and is also, probably in many cases, emotionally deregulated and saying difficult or hateful things to us when we try to help them. 

I saw a therapist and that helped me to give a voice to my anger in a safe place where I didn't have to risk making the situation at home worse than it already was. I had a lot of ugly and yes, hateful, thoughts in my head about what was happening, and therapy helped to diffuse them so that I could get on with the everyday tasks which needed to be done. 

Hang in there. Sending hugs.

Kali



Food=Love
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tina72
kazi67 wrote:
When I found it impossible to seperate my d from the ED
my therapist said to write down all the things I loved about my d ie:caring, funny, considerate, loyal, trustworthy, hardworking etc
and on another page all the ED traits ie: the lies, selfishness, moody etc.


I think that is really a great idea. You can see what your real d is worth fighting for and what ED traits you need to work on. And that it is not the same.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
How my heart breaks for everyone who is struggling on this thread.   It is such a horrendous journey - can there be anything worse than watching a child lose weight with no realisation of the risk and no desire to cooperate or 'want' recovery?  Can there be anything more heartbreaking than seeing a child not be able to have an even semi-normal relationship with food and eating, and feel utterly powerless to be able to change things or bring about improvements when they binge and purge and are desperate to maintain an abnormally low weight through it all?  
However it never fails to make me rage to see how clinicians are not doing the research themselves to try and understand these most mystifying of illnesses - which can at least be better understood if the impact of lack of nutrition on the brain is understood, as well as all the biological and genetic 'wiring' that makes some kids more disposed than others to going down this path.   Because their  lack of a really deep understanding makes them prone to act out of ignorance and make excuses for what are essentially THEIR MISTAKES!!

Deetz - what idiot of a doctor allowed your d to return to dancing with such a mistaken notion of what 'normality' should be?  What if he had told your d that any kind of exercise other than gentle walking was absolutely banned, possibly for years, and that she should put her energy into doggy day care and leave exercise behind for the time being?  You have been so badly undermined that of course the illness now has the upper hand - and of course any weight loss, even the slightest, will make the symptoms worse again. And there still seems to be talk the world over of a patient being 'weight restored' when teenagers are meant to go on putting on weight throughout their teens and well into their twenties.  Why is this never factored into the equation?  You have been really let down by the so called experts and I totally get the exhaustion and resentment.  I can't do anything but feel outrage on your behalf - you are doing your best in the most difficult of circumstances and I have so much admiration for you.

And tp7: 
" In fact, we just had a talk with her current PHP therapist where she told us that the entire PHP team had a discussion about our d and they feel "stuck" because she hasn't made any progress and they've done just about everything they can think of to make her want progress but she doesn't seem to want it. "
Of course your d won't 'want' progress - she is only 13 and simply has no insight into the illness or why she is behaving like this.  And then they have the cheek to call her "a very complex case".   Another example of 'patient-blaming'.

Just think how different it could have been if they had told your d that she has a very difficult illness to beat and that she needs to follow all instructions to eat what her parents are telling her, that she will need to keep putting on weight and that she should not worry about eating independently until as such time as she is preparing to leave home (Kartini recommendation with younger patients) and that they will not accept any arguments from her because this is the way it is  and they know the illness well.  

I despair that really up to date effective and efficient treatment is EVER going to make its way round every treatment centre and that we are only going to have a few centres where they really 'get it' and know exactly how to engage and keep the patients 'on board'.

The irony is that I genuinely believe that, underneath, patients know when they are being let down by poor clinicians or practice and that is part of the reason they themselves disengage.  And clearly when there is no compliance at home, it is because the illness has been allowed to get the upper hand by ignorance and out of date thinking of services.   
Rant over.  I really feel for you both. 

Believe you can and you're halfway there.
Theodore Roosevelt.
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peregrine_USA
I just posted the titles of two books within my post about the definition of insanity.  Perhaps they might help?
Peregrine_USA
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deetz
Thank you all so much for your replies. It was helpful just to reach out and vent a little. I had a very good call with our insurance case manager to get some more support for myself and our family and what some of our options are, which even having the conversation was helpful. Hopefully we can make some changes.
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sandie
Great to uderstand the options. That would make me feel more in control of situation. I am so glad you feel hope. Xxx
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Playball40
Deetz -  I feel like I could have written your post word for word.  I'm in year five now and know exactly how you feel - you forgot the part where you end up feeling guilty for being tired and angry.  I hate preparing meals, sitting around watching her 'eat', listening to her calling me names....she does NOTHING, repeat NOTHING to try and get better - won't challenge herself even a little.  For exactly the reason you said....in their mind, they are not sick, we are the ones with the problem.  Of course rationally I know it's nonsense, it's the ED talking, it's not their fault..blah blah blah.  I've heard it for five years now. 
I know I sound like a heartless b....tch.  Who knows, maybe I just am.
Caroline
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Playball40
kazi67 wrote:
When I found it impossible to seperate my d from the ED
my therapist said to write down all the things I loved about my d ie:caring, funny, considerate, loyal, trustworthy, hardworking etc
and on another page all the ED traits ie: the lies, selfishness, moody etc

then I could see my d again when no longer could see her at all and I didn’t t even want to visit her in hospital as I felt all of our hard work, money and tears was for nothing she had completely taken everything from me there was nothing left of me to give I felt defeated and hopeless and at a loss that she would EVER get better (only once I did that activity I could see ED had taken it all)

this REALLY helped me and possibly could help you, then I  could hate the ED not my D
❤️
Unfortunately, I'm not sure I remember anymore.
Caroline
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tina72
Playball40 wrote:
Deetz -  I feel like I could have written your post word for word.  I'm in year five now and know exactly how you feel - you forgot the part where you end up feeling guilty for being tired and angry.  I hate preparing meals, sitting around watching her 'eat', listening to her calling me names....she does NOTHING, repeat NOTHING to try and get better - won't challenge herself even a little.  For exactly the reason you said....in their mind, they are not sick, we are the ones with the problem.  Of course rationally I know it's nonsense, it's the ED talking, it's not their fault..blah blah blah.  I've heard it for five years now. 
I know I sound like a heartless b....tch.  Who knows, maybe I just am.


I know you are not a heartless b****. This disease brings EVERYONE to his/her borders.
I just wanted to ask you if it was by incident or willently that you posted a name below. If that is your real name and you want to stay private (this is a public forum) you can change that with editing your profile (use the pencil). If you need help, please contact a moderator.
Keep feeding. There is light at the end of the tunnel.
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WeRnotdone
Hi Deetz,
  You are not alone the struggling with this illness makes you feel that way. Isolated and like you are losing your mind. My daughter is 17 and has been struggling for 2 years. We are still trying to get her out of her 2nd relapse that started in January. You feel like so much of the treatment is up to you to decide. I have read every book I can get my hands on. It has taken a toll on our family, I left my job to take care of her. She stays at a BMI of 19 that most would say that is a healthy weight but it is not for her. She still tries to monitor and count every calorie she never sits down, always moving. 
   I am keeping her at a low weight by supervising her food. I had my father watch her for a week so I could go on a business trip with my husband and she lost weight. Left on her own she can't feed herself enough just too much stress and OCD over food amounts. 
  Now we are looking into a residential treatment or starting medication. Trying to get her all the help she can get before she turns 18.
It's important to take time for yourself however you can. Every now and then I look at pictures of her before she got this illness and I know what we are working to get back too. This illness has them trapped they are still there. Hugs to all of you.
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