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yellowcaty

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Reply with quote  #1 
Hi
After finding out yesterday that D will be going to hospital, I just can't seem to get myself together. I am trying really hard not to let her see me upset, but I just can't help it. After 4 months of trying at home with no progress, I feel so helpless and that I have let her down.

I read the posts on here everyday and I feel that I don't have the strength that most of you seem to have. Just need a few words of advice/ comfort today that things do get better.

Yellowcaty
tina72

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Reply with quote  #2 
Hi dear yellowcaty,
so sorry that you are so exhausted today. ED is such a hard illness and it takes away so much power.
We are not these super-moms you think we are. We all have been where you are now, some earlier, some later. A lot of us needed IP to get started (my hands up, too). To bring her to hospital doesn´t mean that you let her down. It doesn´t mean that you failed. It just means that she needs a higher level of care at the moment and that ED needs to see you take it serious. IP changed a lot for us, my d saw there that tubes exist and that they will get you to eat no matter what. My d learned to eat there again and then we had a good transition to our home because she really wanted to come back home and she tried to do everything for that.

Try to get a new start. Take care of yourself and try to reload your batteries when she is in hospital.Think about what went good and what went bad and how to change things when she cames back. Cook and fill your fridge and take a new start. You can do that.
Things really will get better. But it isn´t a straight road to recovery and sometimes you need to drive those curves or a little detour to get to your destination.
Send you a big hug!
Tina72
OneToughMomma

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Reply with quote  #3 
Dear yellowcaty,

The emotions you feel, helplessness and disappointment, are completely normal.  We all know what that is like.

You've tried hard for months.  Your family has given it your best, but right now she needs more support, and there's no shame in that.  

For my d, admission was exactly what we all needed to get things going.  At the time I just felt awful, but in retrospect it was exactly what needed to happen.  If you look in the Hall of Fame, you can read some of the things we did to get ready for discharge.  

However, the most important thing was to get some rest and take a breath and connect with the family in a different way.  

Take care of yourself, and know that you are an amazing parent.

sending hugs,

xoOTM


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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Kali

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Reply with quote  #4 
Hi Yellowcaty,

Please don't blame yourself. You haven't failed your daughter. My d. was in the hospital for 3 months and it started her process to get better. If she needs a higher level of care you are doing the absolute right thing for her; the opposite of failing. It doesn't matter where someone is treated, whether at home or in the hospital or at an outpatient program; it just matters that you are helping to make sure she is safe and that she starts eating again and she has the appropriate level of care. 

When you first bring her it might feel unbearably difficult, due to the uncertainty of what lies ahead and the fears you have for your daughter due to the illness. But you are doing the right thing. Try to imagine a future where she comes home and she will have been helped to make progress against the illness with both nourishment and therapy, be well on her way towards weight restoration and you will be able to feed her without the level of resistance you are meeting now.

warmly,

Kali

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doris

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Reply with quote  #5 
Yellowcaty.

I was exactly where you are last November..4 months from diagnosis and trying really hard at home but no improvements made in fact ED seemed to get stronger and D lost weight over that time. I was (and continue to be) an emotional wreck much of the time but two weeks in hospital was a massive turning point for my daughter and me and set us on the road to start putting weight back on. It was only when she went into hospital that she really began to acknowledge there was a problem. It isn't easy and it has taken huge amounts of time and energy but it can and does happen, we have a long way to go yet but we are heading the right way at the moment.  It may help you for the battles ahead if you can try and take some time to rest and look after yourself whilst she is being cared for by others. My mum instinct wanted to spend a lot of time in hospital with her but it helped to distance myself a bit so she hated being there enough to use it as motivation to eat when she came home. I'm thinking of you x
Torie

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Reply with quote  #6 
Yellowcaty, please know two things:

1. We are with you in spirit; and

2.  It does get better.  Really.

Hang in there.  xx

-Torie

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

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Reply with quote  #7 
Yellowcaty, you haven’t failed her. You’ve done a great job getting her to this point. She just needs a higher level of care. Everything you feel, we have all felt. I would highly recommend Eva Musby’s book, which speaks to having self-compassion. Allowing yourself to have these feelings and understanding it’s just part of the illness. It’s a marathon, not a sprint. You all will get there. Just hang in there. It will get better.
mid73

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Reply with quote  #8 
Just to add my voice of agreement to all the other replies. Nobody has failed. Not you, not your daughter. We wouldn’t as parents feel guilt about a hospital admission were it necessary for other illnesses. As others have said so often hospital is where recovery needs to start. It gives you chance to rest and regroup.

All the very best.
yellowcaty

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Reply with quote  #9 
Thank you ever so much for your replies. It is so heartening to know that I am not alone. I don't have family around and only a couple of friends really understand, so for myself and my husband it has been a really lonely place. My husband is not around as much as we would like because of work, so I am left to do the vast majority of the care myself.

Doris- like your D mine has lost weight since diagnosis. She is quite compliant with the eating, but we just can't seem to stop the purging. We have done everything CAMHS have suggested and also taken lots of advice from what I have read here, but it still happens. We supervise for 2 hours after meals, but it still has an impact on her weight. She is eating at least 3000 cal now, but then purges more.

We have had excellent support from our CAMHS team and I don't know what I would have done without them. I think part of the problem now is not knowing how long we will need to wait for a bed and how close it will be to home. Once we know it may be easier to plan.

Thank you all again
Yellowcaty
tina72

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Reply with quote  #10 
It really IS a lonely place. I have nearly no social contacts any more despite one true friend who is ringing up every second week since 14 months now.
So please come here to vent and to ask, this is not only for emergency but also for social contact with other families. We know what you feel and what you are talking about and we like to have some social contact, too.
Great that your CAMHS team is supporting you that much and I hope you will soon get a bed near home. Stop purging is essential, if you cannot get that you will not win this fight. They will help you and then you get a new start.
Please take the time to care for yourself. It is such a long run and I still feel so exhausted and tired although everything is quite o.k. here at the moment. A little bit more stress because of final exams in school at the moment and I am full of anxiety again. Just these "what ifs" drive me crazy sometimes. Take care and do something nice with hubby.
Tina72
juditab

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Reply with quote  #11 
Yellowcaty, Don't be too hard on yourself because the refeeding process is so incredibly hard. Four months in i had to begin taking antidepressants to deal with the stress and despair I felt. Use the time to continue educating yourself and tend to your own needs.
Mamaroo

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Reply with quote  #12 
Hi, just adding my voice to the others. We tried to refeed our d at home, but ed just grew stronger. We told her if she continued not eating, she would spend her birthday in hospital with an NG tube. She didn't believe us and continued eating less and less. Lo and behold, she spent her 10th birthday at hospital with an NG tube. That kick started her recovery. Kartini clinic believed it is better to start at a higher level of care and then step down. After a couple of months, she was again refusing food, we told her she would be spending Christmas at the hospital and this time she believed us and started eating more. IP shows ED that the food is going in, no matter what.

Like Tina, we lost a lot of friends, have only one friend who knows our d was ill. We reconnected with some older friends, who doesn't know about my d's illness. We all here are your friends, you're welcome to come and vent here as much as you need to.
 
Sending you a lot of best wishes!

__________________
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 a year and WR 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.
yellowcaty

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Reply with quote  #13 
Thank you for all your continued support and kind words. I am beginning to get used to the idea now and can see some of the positives of IP. One selfish positive (not sure that that is the best way of putting it) is that we will have a bit more time to focus on our other children. They have had to go through an awful lot and you can tell it is beginning to take its toll on them.

Yesterday her behaviour seemed to change. She kicked me over what I had prepared for dinner and then refused to eat it for a long period of time, threatening to kick me again if I made her. She accused me of trying to make her gain weight so that they wouldn't accept her at hospital. It was all my fault that the ED has got worse because I wasn't doing my job properly and she wanted to get away from me. Obviously these things were hurtful, but I did take from it that she wants to get better.

Later she let me hold her, something that hasn't happened for a long while, and broke down saying she was too tired to fight it anymore and wants the help from hospital. This was very brave of her and I am proud, but then she begged me to stop making it harder by feeding her too much and stopping her being sick. She seems to think that because she is going to hospital that they will fix it and we don't have to do it anymore. We obviously talked about how we can't just give up and that it will still be hard in hospital. I'm not sure whether this is the ED talking or my D and what I should do about it. Another problem we face is that we don't know how long we will have to wait for a bed.

It breaks my heart to see her like this and I feel like she is moving further away from me. It is so hard to be strong and if I get upset she accuses me of trying to play the victim. It is her seventeenth birthday at the end of March and it is likely that she will spend it in hospital.

Yellowcaty
tina72

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Reply with quote  #14 
Hi yellowcaty,
we had that behaviour right before IP, too, and my d started to restrict everything including water in the last days. Be aware that she drinks enough or take her to ER to maybe get a bed sooner.
It is not selfish to think you will have more time for your other kids, it is unfair what ED does to the whole family. Your other kids deserve to have some nice time, too, and you need to protect them, too. So take this chance to heal some wounds there in this time. It is needed.
My d begged to get her to hospital in the last days, too. Later she told me, she really thought they can help her and turn a switch or something like that without the need of eating. She thought we force her to eat and that the hospital will not do that. Reality told her some days later that they would force her even harder and that most of the kids their had a nasal tube which she didn´t know that this was existing before. So she learnd the hard way that eating at home was much better than eating in the hospital and that was needed for us. Later, when she was at home again, I just needed to say "go and pack your bag" if something didn´t work. She never eber wanted to go back there again.
Try not to take to your heart what she said. You know that this is not true and that it is ED speaking out of her.
Looking back today my d is thankful for what we did and she said a lot of times that she would not have survived that without us.
ED might move further from you for some time, your d inside not. Try to be there and stay calm. Fake it until you make it. I know it is hard.
Yes, it is sad that she will spend her birthday in hospital. But if that is the price to pay it must be o.k. Better spend one birthday in hospital than living with ED the rest of her life. End of march is shitty wether...you can have a birthday party in early summer and then she might eat a cake with you [wink]

Tina72

hertsmum

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Reply with quote  #15 
Hi Yellowcaty
My D spent her 16th birthday in IP and at the time it was horrible, I have never cried so much in my life. But as so many others have said it was exactly what we needed to kick start the recovery process that we weren’t able to do at home. Hang on in there, it DOES get better xx
juditab

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Reply with quote  #16 
Know that she is completely in the grip of ED when she does something like kicking and screaming and she has little to no control over herself. It is a huge sign of her trust in you that she could come to you later for comfort. My d does that sort of thing frequently and our FBT therapists always remarks that it is a good sign.
yellowcaty

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Reply with quote  #17 
Confused today- she did really well yesterday, eating and complying with 2 hour supervision ( still going away immediately after this to be sick).This morning I told her how proud of her I was and she flipped. She shouted and started to bang the table. She told me I didn't understand and was trying to keep her out of hospital. I can't decide whether she wants to go to hospital or not!

Yellowcaty
tina72

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Reply with quote  #18 
Hi yellowcaty,
try to think in EDs way - it is very difficult, I know.

What you did "wrong" was to tell her that you are proud that she (d) was compliant yesterday and she (ED) flipped out about that.
There are two hearts in her chest: Your real d wants you to be proud of her but ED d is now blamed by ED because she was compliant yesterday.
So hard to understand, I know. But they cannot hear praise at that state. Try to just smile inside when something worked well and do it again and do not comment it.
Hospital: the same - real d wants to get help, ED d doesn´t want that. It is not her decision any more. You need to make this decision and if it helps you to stop purging it is the right one.

Sorry, it is that difficult, but it will get better. If you can stop purging with IP and make her gain some weight and the brain starts to heal, you will see more of real d and less of ED d and then in future there will be some time to tell her that you are proud of her and she will accept that again.
Tina72
yellowcaty

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Reply with quote  #19 
Thanks tina72

It really helps to talk to people who have been through the same kind of thing and actually understand. Learning on the job is really hard, especially when things seem to change every day.

We can not tackle the purging at home, so you are right that she needs IP care. The eating side has always been easier to manage. What I am finding difficult is staying strong and not giving in now we know IP is going to happen. She is begging me to make ordinary food and not to give her so much. I think it may get easier when we have a bed and a date.

Thanks again
Yellowcaty

tina72

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Reply with quote  #20 
Try to stay strong and not give in and do not serve "ordinary" food to her because of IP.
You do not know how long it takes and she will get down more and more if you do that.
And you should not show weakness to ED because you will get her back from IP still not recovered and you need to refeed her after that so better be consequent now so you do not have to go back to square 1 afterwards.
Hope you get a date soon. Crossing all available fingers...[wink]
Tina72
yellowcaty

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Reply with quote  #21 
Just had a phone call from the doctor to say that her blood test results are abnormal and they need to be repeated. She said it was the PH levels due to all of the purging. Has anyone had experience of this?

Yellowcaty
Kali

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Reply with quote  #22 
Hi yellowcaty,

Stay strong...the tests show that she needs to have the purging interrupted. When will she be going in?
Potassium can be at dangerously low levels due to purging. What was her heart rate?

The unit my d. was in did not allow her to go to the bathroom unattended for an hour after every meal. When she goes in you could speak with the staff and make sure that they are following that protocol with your daughter.

sending support,

Kali



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tina72

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Reply with quote  #23 
Abnormal blood tests are "normal" with Ed and especially with purging, it would be a wonder if she had normal ones.
If you have a blood pressure monitor in the house, control her heart rate twice a day. If it is below 45, tell that your GP or take her to ER. You can get that with your fingers and a watch as well.
My d had very bad blood tests also, we needed to add a lot of minerals and vitamins since 6 months now and it is still not normal again.
Let them look for vitamin b12 and zinc as well, both make depression and less appetite if missing, two things you do not need at the moment.
Tina72
Foodsupport_AUS

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Reply with quote  #24 
I agree with the others that the abnormal blood tests are showing how compromised she is due the purging. All the more reason that she needs that bed and behaviour interruption. 

The normal food/less food part of course is part of her illness. My D was unable to eat at all after being told that she was to be admitted, but they didn't have a bed. She will argue that if only she ate less she would not feel the same urge to purge. That is true, but of course her body needs the food as well as her not purging. Giving in to one half is giving in to her illness. If at all possible keep going but as others have said if she cannot keep going then attendance at an emergency department may be necessary and hospitalisation necessary first. 

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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  #25 
Hi yellowcaty,
how are you doing?
I was thinking about you...[wave]
Tina72
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