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Foodsupport_AUS

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Reply with quote  #26 
I think it is important when looking at consequences they do have at least some form of logical progression. They should not be a punishment for not eating but rather as a result of not eating. 

Not going to school if you can't eat or requiring quiet sitting if unable to eat all have a very logical progression to them. 

Phones, television, other quiet activities I would classify as distractions. They can be useful to distract from problematic thoughts but they also can get in the way of eating. I would suggest that as a rule phones should not be at the meal table, long term most of us would prefer that our eating partners did not look at their phone. More to the point since they require one hand at all times they distract from the act of eating. So phones start after eating.  What can be done is using videos whilst eating, music, and conversation cards. Some have found that stopping music or videos until eating has resumed is a step. Giving prompts pick up fork, take a bite can help. 

After the meal I would give back the phone, regardless of what has happened. Being consistent is really important. I would strongly suggest avoiding the building consequences strategy eg. you can't do X tomorrow if you don't eat today. If they don't do Y today there is no motivation to do anything further. 

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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.
Hibiscus

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Reply with quote  #27 
Hey there makeherwell
How is it going?
makeherwell

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Reply with quote  #28 
Hi Hibiscus, thanks for checking in. Not so great actually. As I suspected, she lost over a kilo when weighed at CAMHS yesterday. The counsellor said we are now at crisis stage - she needs to start gaining or she’ll be back in hospital. We are supposed to go away to Noosa on Saturday but I have to get medical clearance first from a GP. She knows all this but she is still struggling to finish her food or stop the habits.
Foodsupport_AUS

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Reply with quote  #29 
Holidaying with ED is really tough. ED comes on holiday with you. We had to cancel several trips over my D's illness because of ED. 

If you are planning on going, ED needs to have no way in. The rules for our holidays were that if she  could not manage to do all that was required we were prepared to go straight back home, and absorb all the cancellation fees. 

It may be that she doesn't really want to go too. Going away can make eating much more challenging, and any positive things she may be able to do while away may not outweigh her anxiety about the food. Best of luck. 

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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.
kazi67

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Reply with quote  #30 
Makeherwell
This is so hard, we had to cancel many trips in the past year
Others will say they went and it worked, I guess you know your d and your situation but if your gut tells you to cancel I would
If you get a medical certificate you can get refunds or travel vouchers (that’s what we did) it took a long email explaining the facts of anorexia and the risk of her safety and others on the plane if she was to have a meltdown
In our situation my stress levels was were so high and my d was so very ill that I wouldn’t risk any extra stress on her or me and possibly set a relapse off
I also made this decision after allowing my d to go on a trip with her sister which resulted on d return with d being in A&E twice in 2 days then being admitted to hospital for 4 months
Things can and do get better though and now 5 months after her hospital admittance I have confidently booked us a 10 day trip away together
x
Hibiscus

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Reply with quote  #31 
Hey makeherwell,
sorry to hear about the weight loss, but I guess it confirms your instinct. Has your daughter has the standing and laying blood pressure taken?
Does your d know you are thinking about not going to qld for holiday as she is too ill? Also how scared is she if hospital? Guess I am wondering about what might motivate her. I think ED has got her in a bad place at the moment. Personally, I would re think the holiday, how long were you going for?
Only you know what the best course of action is.
My thoughts/ suggestions are:
Let hubby go with boys and you stay home with daughter. Could your sister come for the weekend to help you( I know ed is scared of her but.....also u will need her support and will help establish how things have to be at home) ?
I think maybe you need to have the horrible confrontation I know you are dreading. Whenever I have avoided these , things only get worse.ED thinks it is in control and will keep going and make her lose more weight. She will go beserk and it will be awful but afterwards it will be better. Also better if the boys are not around for this. ED needs to know u are in charge and u mean business.
We have had some terrible times, ( as has everyone here and I know you have too) but sometimes it is the only way forward and things are easier when guidelines are firm. No spilling / hiding/ dropping food she must eat every crumb , that is every crumb. Clear outcomes about what happens next if this doesn’t happen. Ok she may miss a meal or not finish one , follow through and present the next one as normal. Set it up so d knows what is coming then she is making a choice.( or sorry ED is but...) You would be doing this out of your love for her, to save her and to keep her out of hospital.
You know how to do this. I don’t want to tell you what to do or pressure you. I am mostly around today if you want to talk more.
Hugs 🤗 Hibiscus x

makeherwell

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Reply with quote  #32 
What great advice and support. Hibiscus, you made me cry because you are right.
Ok, the plan is if we get medical clearance we go (it’s only 6 days) as it has a kitchen so I’ll prepare meals and h and I can work together. Hopefully the change in environment will help but we will be prepared to come home if she doesn’t eat enough. If habits etc haven’t improved, next week of school holidays is crunch time. Boys can stay at grandparents, my sister can come over and we do what you say Hibiscus. I’ll let you know how it goes! How are you going? Plans for school holidays??
Hibiscus

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Reply with quote  #33 
Hey again,
Sorry to make u cry, we do enough if this already , don’t we?
Possibly i would let her know conditions of holidays and ask her to make a show of good faith for rest of week. ( don’t expect too much cos ed probably won’t let her) I also wouldn’t mention 2nd week of holidays (lol) as she will stress about it. But sounds like a plan, so good on you!
We aren’t on school holidays for probably another 3 /4 weeks, thank god!
I think they stagger Australian school holidays.
Weather will be beautiful so I hope you have a great time.
D is going ok and so am I. Am feeling a little bit optimistic for the first time in what feels like forever. ( hoping I am not jinxing myself here)
I usually check forum daily so I will look out to hear how you are going.
Hibiscus x
Hibiscus

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Reply with quote  #34 
Hey makeherwell, hows the holiday?
makeherwell

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Reply with quote  #35 
Thanks for checking in, Hibiscus! It means so much. As you very wise women predicted, it has been horrendous. Breakdowns at nearly every meal, refusing to drink drinks, escalating violence if we try to stop her leaving the unit without finishing. We would take her home but honestly don’t think we could get her on the plane without a police escort. Plan B on return will be put into action - 2 weeks where nothing else matters except resting and eating. Hospital in the home (if she doesn’t get readmitted to real hospital). TBH I’m dreading it but I can’t see another way to get her back on track?? My sister can’t have her back as she has a 13yr old girl who was badly shaken after my ds last stay but she will be around to help. I will also have to get my h to stay away for a while - he can get her to eat some but he can’t follow through on consequences. He’s good cop and I’m bad cop but to get her well, I know we need zero tolerance to ED but he can’t do that.

I truly hope things are still going well for you??
makeherwell

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Reply with quote  #36 
Just on the escalating violence, has anyone got any suggestions on how to handle it to stop both myself and my d from getting seriously hurt? It mainly happens when we try to block her from leaving to spit food out or try to follow through on consequences like taking her phone. She gets this look and I know she can’t control herself which is scary for both of us.
scaredmom

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Reply with quote  #37 
Could you let us know exactly what is happening? You need to keep everyone safe. So do you need to call emergency services? Do you have a safe place in the house so that when things escalate she can go to it or you can? I would tell my D she can yell and scream but NO violence ever. If she go violent and threw things and kicked me, she would have to go to her room. When she would get upset and she would almost throw things or throw, I would repeat that she will not be violent and that I do not accept violence. The tone if my voice was firm and that would stop her in her tracks. It is more the threat that you will follow through that can stop them. At least for my D that is how it worked.  Also we stated we would call emergency services and we would have if needed. You have to follow through. In a quiet moment, discuss calmly what you will do when she gets violent. You can let her know that you know that she is unwell and that you are helping her and you know she does not wish to hurt anyone and you don't want her hurt in anyway.  She likely feels so bad about all of this, please remember your real D is there. She is just held hostage by ED right now. 
I hope there is something here you can use. 

XXX

Foodsupport_AUS

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Reply with quote  #38 
Sorry the holiday is going badly and it is not much of a break.

There needs to be a zero tolerance for violence.   This illness does play with their emotions and often during refeeding they seem to fly between one level and the next in an instant. There have been a number who have had to call emergency services/ police to manage this. She can control this, and needs to be reminded that she needs to.  Just like a toddler needs to learn how to control their tantrums, which this often emulates - just a lot worse in appearance in a teen.

When she is calm/not around food it needs to be made clear what the rules are and the consequences.  That may include calling the police. If you think she would be violent about going home early to be honest I suspect that is what you need to do. There should not be a sense that ED is controlling the show.

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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.
Torie

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Reply with quote  #39 
Quote:
Originally Posted by Foodsupport_AUS
If you think she would be violent about going home early to be honest I suspect that is what you need to do. There should not be a sense that ED is controlling the show.


Agree. xx

-Torie

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Hibiscus

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Reply with quote  #40 

Hey makeherwell, 
sorry it has been a bad holiday, you must be just about to go back home now? wasn't it 6 days? So the end is in sight.
You are all suffering including your D, who is having a very difficult time internally from ED. FoodsupportAus is right , you need to appear in control. ( even when sometimes we are quaking in our boots). If you need to,  key lock the door so she can't leave which avoids the 'toe to toe' confrontation. It is very difficult not being in your own home and trying to manage this. If you need to back down from a meal or drink situation, make it your decision, not hers/ EDS. 
Again as suggested by food support, talk to her when she is calm. I would acknowledge what a hard time she is having and clarify what you expect, and how things need to be and what the consequences will be.  Connect with her if you can, she is scared. ( this may be easier to say than do but she will hear you even if she doesn't respond or rolls her eyes, swears etc.) Internally she is probably scared she is driving you away, Ed is driving it , not her. Let her know you are on her side and trying to stop her having to go to hospital and miss out on school and how much you love her.
It will feel good for you too, that is to have the soft times as well as the tough times. 
When she tries to leave or lashes out, I think you are dealing with her terror- and this would be her 'fight or flight' response. And you do need to keep everyone safe, scaredmum and foodsupportAus talked about this.  
Trying to deal with this in confrontation didn't work for us or our D.  
With our D, I found when we confronted and tried to stop her leaving ( just the room, not the house)she would initially lash out and then shut down and crawl blankly into a corner. I know the "look" in  her eyes that you mention. I think of that as ED. And it is really angry.   
I think each kid and parent reacts differently, but I couldn't handle it- seeing her shut down like that. That is not to say that I didn't follow her around with the left-over food, like a broken record asking her to finish it and have many things thrown at me( books can really hurt-who would have thought!) and get shoved too. A strong "STOP" sometimes helped. Sometimes the broken record worked, I think just to get rid of me. 
I think you need to use your leverage- school , the phone and the internet access. We worked on the life stops till you eat premise. Not sure that I interpreted it correctly, however I removed computer, ipod( music) and phone and she could have them back if she ate . So if she refused to eat all her food she didn't get it back till she ate all of that meal or all of the next meal. Don't ask her for it, take it-when she is in the shower, asleep, on the toilet or when she puts it down for a second. If this isn't possible, you could take the charger or tell her to hand it over or you will cancel/ suspend her plan( be prepared to do this) . I also removed books, no TV, in fact anything that would entertain her and told her to stay in bed and rest. NOt saying this is potentially the best approach, but what we did in desperate times. ( I just re read this- want to clarify, I am also not telling you what to do, even though some of it sounds like I am, sorry- you know what will work)
Would holding out a carrot work, when you finish that we will go and .........just waiting for you to finish you..... and then we will go

My H is also great at encouraging, but poor at follow through so I am the food police in our household. Its tiring. I ended up saying to him that if he couldn't help to at least shut up and look supportive ( he would say unhelpful things at times) even if he couldn't actively help. At times his softness in the after approach got her to eat, of course I was still the bad guy, but she ate. BY this I mean she would storm off to room, I would follow with food which she was determined not to eat, do the broken record thing and then he would come in as well, and then I would go to the toilet, hang the washing- whatever just to get out for a minute and  say I would be back in a moment. While I was gone he sometimes persuaded her to finish what was needed. In between food times, I would visit her room often to check in on her( make sure she was alright) or hang out with her for a bit just trying to connect so it wasn't all about food. 
As your  holiday is nearly over, you and your husband need to decide on a plan to get through this in best possible way for you all without backing down from ED.  
Please take a break and go and do something nice for yourself, walk on beach, have a coffee, find a field and scream for a bit. You will be on full duties when you get home so just take a moment for you. 
Have you read Eva Musby's book? It is really helpful, so I would recommend it if you haven't. 
 Its natural to be scared about Plan B, thats Ok, but if she isn't hospitalised I suspect it is your only way through. You are strong, you can do it. 
 My apologies, I have rambled a fair bit, hoping that you can find something useful in it. 
Thinking of you,
Hibiscus. XX

Torie

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Reply with quote  #41 
Quote:
Originally Posted by makeherwell
Plan B on return will be put into action - 2 weeks where nothing else matters except resting and eating. Hospital in the home (if she doesn’t get readmitted to real hospital). TBH I’m dreading it but I can’t see another way to get her back on track??


That is pretty much what we all had to do - nothing else matters except resting and eating.  Unfortunately, that continues much longer than 2 weeks.  Full nutrition - every day, every meal  is the ticket to getting your precious d back.

Quote:
Originally Posted by makeherwell
My sister can’t have her back as she has a 13yr old girl who was badly shaken after my ds last stay but she will be around to help.  I will also have to get my h to stay away for a while - he can get her to eat some but he can’t follow through on consequences. He’s good cop and I’m bad cop but to get her well, I know we need zero tolerance to ED but he can’t do that. 


It seems that your sister has a magic touch.  I wonder if you could dispatch your h to watch your niece and have your sister there with you for a time.  Would it work to have her watch what you do and make suggestions?  Or you could watch how she handles the meals?

It is terrible to have to be the bad guy all the time, especially when what we have to do is so very hard on our poor kids.  But really, it is a kindness to do whatever it is we have to do to drag them back to recovery.

I hope the trip back home is uneventful. xx

-Torie

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Mamaroo

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Reply with quote  #42 
Quote:
Originally Posted by makeherwell
Just on the escalating violence, has anyone got any suggestions on how to handle it to stop both myself and my d from getting seriously hurt? It mainly happens when we try to block her from leaving to spit food out or try to follow through on consequences like taking her phone. She gets this look and I know she can’t control herself which is scary for both of us.


This is tough! My d slapped, kicked, bitten me and pulled my hair out 😣. When I got over the initial shock, I learned to block her bows or just to hold het arms so that she could hot me.

I agree with the others, take her phone before the meal; plenty of times I had to wrestle the iPad out of my d's hands and often times had to switch off the wifi if I was unsuccessful.

I'm sorry ED came with you on holiday 😤. We had such a holiday just before she really became ill and we were just suspecting something was wrong. Worst Holliday ever!

I hope you will be home soon. Sending you lots of hugs 🤗🤗🤗🤗

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D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
makeherwell

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Reply with quote  #43 
Thanks so much everyone. We are going home day after tomorrow so will hang in there til then!

You are right - zero tolerance for violence. Scaredmom - to answer you question, it’s a bit similar to Mamaroo. I block the door so she can’t leave the room/house and then she spits at me, shoves me etc Other times, I have wrestled her phone away from her and she’ll go crazy attacking me to get it back.

I need to work on a way to enforce consequences without triggering the ED monster. Taking the phone when she puts it down is a good idea as is deadbolting the door. We have tried these things before but probably not consistently enough.

“( I just re read this- want to clarify, I am also not telling you what to do, even though some of it sounds like I am, sorry- you know what will work)”

Hibiscus, your story is so similar to mine that any insight you provide is helpful and I definitely don’t feel like you are telling me what to do!! Its amazing.

Thanks everyone. I’ll let you know how Plan B goes. I’ll get my sister there for Day 1 to set the expectation and see how it goes!’
Hibiscus

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Reply with quote  #44 
Thanks makeherwell,
Hope the last little bit of your holidays are ok and safe travels.
Check back in when you can.
Take care
🤗 hibiscus xx
Hibiscus

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Reply with quote  #45 
How are u going makeherwell,
thinking of you
makeherwell

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Reply with quote  #46 
Hi Hibiscus

Thanks for checking in. Sorry for slow response. Been in the trenches trying to get her back on track. She had her official weigh with peditrician and lost 4kgs in 3 weeks. She is borderline admittance but we have one week to put on weight. We agreed on the hard rules: no violence, no running away and 100% completion. Last one is the hardest, particularly drinks. The hospital has been awesome though and I can take her into the ward for Boulis (supplement) if she doesn’t complete meals. Its been a real game changer because she knows I will do it.
My sister was over today and d was perfect (ate everything, no complaining). She left and my d broke down over supper (but finally finished). Frustrating but now I know what she can do and that’s my expectation! How are you going??
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Reply with quote  #47 
"My sister was over today and d was perfect (ate everything, no complaining)."

Eating with others is often helpful. Can you get your sister back or invite someone else regularly to have dinner with you?

Tina72

About drinks: Did you already tried healthy looking fruit smoothies?

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Hibiscus

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Reply with quote  #48 
Hey makeherwell,
Good to hear from you.
Wow, the weight loss must have scared you a bit, but sounds like you are doing great, not at all underestimating how hard it is. Great back up from the hospital, that is awesome, and gives you some nice leverage. Glad your sister is lending a hand too. It’s amazing what they can do when they have no choice. I think it gives them some peace and ED just has to suck it up. Good work on supper too.
My d also funny about drinks . She has started drinking a bit more water lately - voluntarily, my eyes nearly popped out of my head when she filled a glass of water and skulled it. Still regulating it during the day but drinking more water at night. She tells me it is for her skin, would your d respond to casual non directed comment about skin? Although I know you would prefer more high calorie drinks, it is going to keep warming up though.
We r ok, plodding along. A bit down tonight, don’t know why. On surface all looks ok, but just worrying I guess.
Do u have 1 or 2 weeks left of school hols ? Ours start end of this week.

But you are doing a fantastic job!

as they say:
Makeherwell: 1
ED: 0
Keep going your are winning! 👍

🌺 xx

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Reply with quote  #49 

Quote:
Originally Posted by makeherwell
Hi Hibiscus

Thanks for checking in. Sorry for slow response. Been in the trenches trying to get her back on track. She had her official weigh with peditrician and lost 4kgs in 3 weeks. She is borderline admittance but we have one week to put on weight. We agreed on the hard rules: no violence, no running away and 100% completion. Last one is the hardest, particularly drinks. The hospital has been awesome though and I can take her into the ward for Boulis (supplement) if she doesn’t complete meals. Its been a real game changer because she knows I will do it.
My sister was over today and d was perfect (ate everything, no complaining). She left and my d broke down over supper (but finally finished). Frustrating but now I know what she can do and that’s my expectation! How are you going??


Wow, you are doing so well!
The weight loss is upsetting and you will get back on track. Having the hard rules is good and you need to make sure you follow through. Your hospital sounds so supportive and that is great. You have your plan A, B,C.
Your strength and resolve really ring through the computer! You are doing great!!


XXX

makeherwell

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Reply with quote  #50 
Hi Tina, my family would come but her ED hates it. Also, the doctor has said a couple of times I need to prove to her and ED that I have control and not rely on my sister.
Hibiscus, I completely understand feeling flat. It’s such a long hard slog, it’s exhausting. You are a true hero. It’s the worst job in the world but she is soo worth it. Yes, I was shocked but not surprised it was 4kg but I was ok because I had a Plan! The boys are away and she is my sole focus. We are reconnecting again and she is calmer and nicer in between meals now.
She drinks water but has never been able to finish milk or juice. Smoothies (even healthy looking ones) are a massive fear which is so sad! As they say, anorexia lives in the last bite (or sip) so I’m really focussed on finishing. 1.5 weeks left of holidays so she needs to rest lots to get back to school.

Ps love the scoring but I think it’s ED 100, me 1 or 2!
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