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muminuk

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Reply with quote  #1 
Not sure what to do for the best.
We have been making sure that d has 3 meals and 3 snacks per day since discharge from I.P..
She managed well at first but this last week has become very, very difficult.
Yesterday we took the decision to miss afternoon snack otherwise evening meal would have been near to midnight. We did supper close to midnight which took until 1.30a.m. Woke d up at 8am for breakfast but it took 2.5hrs to get her to agree to it and then we had to replace it with fortisip. It took an hour to complete.
She is exhausted (as are we) because we are staying up until very late then getting up early to make sure we complete the meals and snacks. Have been doing this for about a week now. H and I are going to take it in turns to go to bed for a couple of hours during the day today.
I’m not sure if it would be better for her to not have supper tonight but go to bed earlier and get some sleep.
She has no motivation in anything. There is nothing to bribe her with.
We know we need to discuss this with her team but as it’s Christmas there is nobody we can ask today.
D refuses to have a nap between meals.
tina72

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Reply with quote  #2 
Hi muminuk,
first of all I wish you a merry christmas.
Try to shorten the time before meals/snacks by not arguing too much about her. She does not need to agree with the meals. Set fixed times (make a plan for that and hang it out open in the kitchen) and tell her 15 min before that lunch is served in 15 minutes and she has to be in the dining room then. Set a fixed time for the meal (for example 1 hour for a meal and 30 min for a snack) and if it is not finished up to then she get a fortisip.
Food is as important as sleep and if you/she does not sleep enough you/she will get more exhausted with every day. The whole time is so exhausting, we are still suffering of tiredness all the day (all of us 3). We go to bed at 1o p.m. like pensioners and our d goes to bed like a primary school girl although she is nearly adult. You need so much power to stand that.
The problem is if you don´t fight that extending meal times it will get worse every day. In the end the loss of sleep will make you cut meals and that is when ED wins. So she must learn that you will not wait and that you will not cut meals. Lunch time is 1 p.m. and not 30 min later. Supper is 8 p.m. and not later. As ED patients often love rules you will need to fight that once through and then she will accept that.
We had some problems with that too and we went down to 3 meals 2 snacks and had no bedtime snack but put the calories into the other meals so they were not lost. Try to do that if you can get them in. Try to wake her up in the very early morning with a heavy smoothie in your hand and just say "drink that". ED is sleeping then and after she drinks she can roll over and sleep another hour or so.
Keep on going. You are doing the right thing. It will get better.
Tina72

EC_Mom

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Reply with quote  #3 
First, congrats for getting all that feeding done! Your determination is scaring ED and will stomp on it.

Second, we had a stretch of very late nights as you describe. For us, I think it was crucial because it showed ED (and I showed myself) that WHATEVER it took, the food was going in. Like you, I also spent at least an hour before every meal and snack talking to d.

One thing that was a tiny bit helpful was to see myself not as arguing, but as simply "pressing". I tried to focus on the positive, with VERY short-term leverage, and although I felt desperate and scared I faked confidence. I just held the spoon up to her mouth and talked about how she wanted to go see the new puppy after lunch, how great the friend's party would be later that day, etc. My arm got so sore, all those hours holding the spoon up to her mouth. But after an hour, sometimes more, she cracked her mouth open slightly and feeding started.

Those were awful weeks. But things got better. If you can limit mealtimes as Tina suggests, that is fabulous. If not, muster all the energy you can and simply do not yield. Things will get better. I think those 1am nights were, for me, part of proving that I was stronger than ED. Also she ate more easily when she was half asleep. 
eternalhope

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Reply with quote  #4 
Tina is absolutely right. This is an ED strategy to wear you down and not eat. We are going through it too unfortunately. All of Tina’s suggestions are spot on. Hang in there. Thinking of you all.
muminuk

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Reply with quote  #5 
Thankyou so much for all your suggestions and support.
Today is just getting worse. We started the morning snack at 12pm ( 2 biscuits and a glass of milk) and it took until 4pm with much crying. Now (at 6.30pm) trying to get her to come for her hot meal. There is no way we will “fit in” time for another meal, snack and supper before tomorrow’s breakfast (even if we didn’t sleep).
I’m so scared that we have lost control.
She doesn’t argue about coming - she just sits on the sofa and can’t get up and sobs when I prompt her.
I can’t set time limits as she has lost interest in everything and there is nothing to bribe her with. She won’t even look at the T.V..
We started off having set times which d managed within half an hour for a few weeks but it’s almost like she’s relapsing to how she was at the start.
She is getting very upset that she can’t do it.
I’m so frightened that she won’t be able to get through this.
Kali

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Reply with quote  #6 
Hi muminuk,

Sorry, you have hit a rough patch. We had a similar thing during the illness. 
I had to break the habit of my d. sleeping late and trying to skip a meal like that. So, breakfast was on the table by 9am. Then I went and woke her up and said "breakfast is ready come and eat". Sometimes if she complained I would say Ok you can have 5 more minutes. Then I'd go back after 5 minutes and insist that she get up. If she says she is too tired than you can say firmly, after breakfast you can go back to sleep if you would like. Then wake her up for snack later in the morning. I found that my d. needed alot of sleep while she was very ill and in early recovery. I wonder if the body needs to repair itself from the period of starvation. 

There is really no reasonable way to get her to eat enough if she first starts at 12 noon. If she cannot finish her meal then IMO it is fine to use the supplemental drink. Also, have you considered using some benecalorie to add additional calories? You can order it online and it has a small footprint—330 calories in 1.5 oz, and doesn't add any taste but has protein and fat. You can use it in pasta sauce, soups, etc. 

The other option if she is really struggling is for her to go back inpatient since she was able to gain weight there and it sounds as though her eating was better when she came home, and you could discuss that with her team. How long has she been home from inpatient and was there any discussion about her returning if she started to have difficulty?

Do you think that perhaps she is having a difficult time because of the holiday and when it is past she will be able to go back to the schedule she was on before? Try changing her schedule tomorrow morning and be firm and calm and compassionate and see if that helps any. Have her go to bed at 10 pm this evening. Have you tried bringing the food to her when she is on the sofa? Some parents have even spoon fed their children. Just trying to throw out some suggestions.

Do you have any pets and if not do you think she might find comfort in a dog or cat?
You are doing a great job and have made significant progress helping your daughter with weight restoration. You have hit a bump in the road and you will get through this. I know you say she will not watch tv but what if you pick out a show you want to watch (that you think she might also like[smile] and both of you sit down in front of the tv and eat there? I also tried playing calm music or music that my d. liked while eating, and placing a pretty plant/flowers on the table where that is what she looked at while eating. Also, can you take her out to a craft store and buy some materials together to make something? Just tell her you are going out to get some things together and then go. Knitting, making dreamcatchers, making soap, painting flowerpots then getting her some nice plants to put in them....etc. Did she like reading? Can you read some books aloud to her at the table while eating? Try to think about what she liked before she got ill and see if you can reintroduce any of those things to her.

I still keep to a schedule and let her know the times we will be eating and what we will be having. She is a little older now but I think it helps if she knows what is going to happen during the day. 

warmly,

Kali





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muminuk

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Reply with quote  #7 
Hi Kali and Thankyou for your help.
The day started at 8am but we couldn’t get d to come for breakfast until 10.30am. She was sat sobbing on her bed and we couldn’t get her to come downstairs in all that time.
I have tried saying that her food is on the table and that she needs to come for it but she just cries and sometimes puts her hands over her ears. I keep repeating that she needs to come to the table but she just can’t do it.
I think we are going to need to speak to her team on Wednesday morning as soon as we can to see what can be done to help.
Have only just finished d’s Evening meal ( 9.30pm) and it took 2.5 hours for her to eat it (and 1.5 hours before that to persuade her to come to the table).
We now have to start trying to get her to come to the table again for the next lot of food and drink.
D refuses to have a sleep during the day although she desperately needs more sleep.
The benecalorie sounds fantastic and we will look into that.
We do have a dog who d adores but since she has been ill she will only smile at the dog but not play with her at all - but at least we get a smile sometimes.
Thankyou so much for your time. I appreciate it so much when people take the time to try and help on this forum.
Foodsupport_AUS

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Reply with quote  #8 
Quote:
Today is just getting worse. We started the morning snack at 12pm ( 2 biscuits and a glass of milk) and it took until 4pm with much crying. Now (at 6.30pm) trying to get her to come for her hot meal. There is no way we will “fit in” time for another meal, snack and supper before tomorrow’s breakfast (even if we didn’t sleep). 


I know how hard it is when this sort of thing happens. 
Firstly, I am sure you didn't start morning snack at 12pm rather that is when she ate it and it took four hours is that correct? It can help to have clear times for starting and a clear expectation of finishing with a supplement if a meal cannot be completed or started. I would also suggest not having a gap between meals if she takes so long with the first one. That is, if her snack/supplement has taken four hours the next meal is already there waiting to be finished. If she can't come to the table bring it to her, she can eat where she is. Nothing is more important. Try not to negotiate, rather offer things such as pick up your spoon, take a bite or even feed her yourself if possible. 

That being said, if she is eating a rapidly decreasing amount it sounds as though she is going to need to go back to a higher level of care. It is likely her ED voice is very loud for her at the moment. 

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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.
tina72

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Reply with quote  #9 
She tries to avoid meals by not coming downstairs/ not coming to the table and at the moment she wins with that.
So interrupt this by taking the meals/snacks to her. Wake her up at 8 or 9 a.m. and bring breakfast to her (the best would be a heavy smoothie with canola oil or cream to drink). My d tried to skip meals by sleeping long, too. That is not possible. You need fixed meal times. She could go back to sleep if she needs after breakfast.
If she doesn´t come to you, feed her wherever she is. If she sees that it is impossible not to eat it will get easier.
By the way, I think 2 bisquits and a glass of milk is way to little to start the day with. She needs much more calories for breakfast. No meal/snack below 350-400 calories. You have to fight for that anyway so make your energy count. She will get more tired and weak if she eats not enough.

Tina72
Mamaroo

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Reply with quote  #10 
I used to feed my d in her room on her bed for months. She only left her room to go to the bathroom, hospital appointments and reluctantly school. She would not watch tv with us, or go out, or visit friends for the first several weeks. As the others said, bring the food to her, if she doesn't eat it in half an hour, bring the fortisip. Don't discuss food choices. My d is weight restored since March, but still can only pick her snacks from a range which I approved and contain the right amount of calories. Have all the meals at the same times each day, the routine reduces anxiety. If she finds food difficult, tells her to taste it and then have the fortisip. My d used to have ensures for months, but was required to keep on tasting her food. Hang in there.
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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.
tina72

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Reply with quote  #11 
I think she cannot come downstairs or to the table because she is so afraid of it.
For her it feels like there is someone sitting besides her holding a gun to her head and saying I`ll shoot you if you get down/if you go to the table and eat.
So please try to go to her and feed her sobbing in bed if necessary. She must eat.
Don´t be afraid of what ED is afraid. Don´t let ED win. If she sees that you are fighting and that you are tougher than ED she will get hope again. You are her mirror. If you let ED win, she sees no hope any more.
Think about what you did different after IP when it first worked and try to get back to that.
I think so much about you. I feel so with you. It is such a hard time and you feel it will never get better. But I can tell you: keep on going. It will get better after proper WR and some time the brain needs to heal. There is a light at the end of the tunnel.
Send you a big hug.
Tina72
muminuk

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Reply with quote  #12 
Thankyou so much for all your replies.
Today has got even worse.
I was up with d last night until 2am again to make sure we got through supper.
When we woke d at 8am this morning she started crying heavily and it didn’t stop for hours (until this afternoon). She wouldn’t come downstairs so I took her breakfast to her room and she became inconsolable and I could not get her to have it. D then said she would come downstairs for it. When she did come to the table it took 2.5 hours for her to finish - with d crying through most of it and me almost constantly prompting her.
Afterwards she cried and cried and couldn’t be consoled most of the time.
We had to replace lunch with fortisip and even that took another 2.5hours to drink (constant prompting again).
She is so stressed and anxious - it’s absolutely heartbreaking.
We did have a timetable at first but she just gradually took longer and longer to get to the table and the length of meals just gradually got longer and longer. We have told her that she needs to come to the table over and over but whatever we say doesn’t get through.
I have nothing I can use to bribe her with as she has totally lost interest in everything.
Her team are back in tomorrow and we’ve already left an urgent message on their answerphone.
Thankyou again.
mjkz

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Reply with quote  #13 
Coming into this late Muminuk.  My daughter had some of the same issues.  I set limits on how long she could eat a meal or snack in.  She had one hour to finish a meal and 30-45 minutes per snack. The timer started when I called her to the table or took the food to her in her room.  She got two warnings about coming to the table 15 minutes apart and then the food went to her if she didn't come down.  I wouldn't spend a long time trying to persuade her to come down and eat.  She got a supplement for everything not eaten in the time limit.  She had 15-20 minutes to get the supplement down.  I put a straw in it and she had to drink it within the time given.

The less sleep she has, the harder things are going to be so I'd say start your time limits and try to get night snack over with and done with by 9:00 or 9:30 so you all can get enough sleep.  My daughter cried a lot too and it was just a way to stretch things out and avoid eating.  I spent a lot  of time saying stop crying and eat a mouthful.  Your best bet is not even to try to console her but get the food or supplement into her and then use distraction.

I set time limits on everything and that was how she needed it. If she was crying, I'd give her five minutes to cry and feel horrible and then her crying needed to stop.  Sounds harsh and like it wouldn't work but it actually did when I put my foot down and told her to stop.  The food or supplement was going in and the crying had to stop.  She told me later it did actually help her to have a time limit set and being told to stop because she would drown otherwise in the sadness and get so overwhelmed that she couldn't stop.
tina72

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Reply with quote  #14 
I think it is hard to say this but all this crying is to avoid eating. I can imagine how difficult it is for you but she has to eat although she is crying. As you said, at the beginning it worked and then she made the meals longer and longer. You will need to break that or you will need to feed her all the day round without interruption and nobody can do that. Try to be harder. Remember you fight ED with that and not your d. She cannot decide to eat and she is so afraid of it that she needs you for that.
I hope you get some help from your team today. If you don´t get the food into her she will need a higher level of care. She must eat.
Tina72
mamabear

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Reply with quote  #15 
Have you tried bringing food to her very early? Like 5:30-6AM. I would make my D heavy calorie dense oatmeal ( 1/2 cup oats to 1 cup full cream and add butter, raisins, brown sugar- easily 1200 cals) and wake her early and spoon feed her while half asleep and she could go back to sleep. Then she could get up in s few hours to have breakfast.

Also- we went through a period of projectile vomiting atvtgectable. We spoon fed her sips and bites for 16 hours a day for a couple of days to break the committing. It was relentless but it worked. Pudding, rich soups, smoothie, shake, ice cream, nuts, muffins.... applesauce with canola oil mixed in...


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