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Hebrides

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Reply with quote  #101 
Dear Floating, so sorry you are faced with yet more delays... along with ED kicking off big time. I'm sure you know it's entirely "normal" for them to feel huge and to have anxiety levels through the roof when faced with going somewhere where they think everyone will be smaller than themselves.  My d was, and is, the same.

I am really concerned for your health - if the transfer has to wait until psych is back (don't really understand why, though), then that is out of your control. Massively stressful for you all, but if you can remind yourself there is nothing more you can do to change the situation, that may help just keep a lid on the anxiety... (wish I could follow my own advice!!). You are doing great, you really are - once d is settled and you are back home you must take care of yourself. Easy to say, I know - but you will have to trust she is in the best place and is safe, and that is enough for now. 

Big hug - you're nearly there.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
ooKoo

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Reply with quote  #102 
Quote:
Originally Posted by floating

She feels huge and very scared to go to UK as perceives she will be fattest girl in treatment and is demanding to come home


My D was admitted at 17.9 and she didn't look out of proportion to some of the other girls, but I know, - its the ED telling her this.  This illness is so bl88dy cruel to our poor Ds.


Very well done for getting the funding!  You must be both physically and mentally exhausted. Please look after yourself too (esier said than done, I know).  And keep us posted! x


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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
floating

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Reply with quote  #103 
OMG  in total shock...............now my hope has all but gone...................

Just phoned Christine at Bethlem Royal hospital, Maudsley and feel sick

We have been on the list for 3 weeks

Daughter is in terrible state waiting for bed and was told
  • lots of people on waiting list
  • they do not have a bed
  • may not have a bed for very long time
  • Advised to look elsewhere

I am in tears.......this is useless

We cannot look elsewhere as funding is ONLY for this hospital, not possible to transfer funding anywhere else.........

Just in tears

She just said if and when a bed becomes available they will make contact with team
Sounds hopeless



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floating

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Reply with quote  #104 
Visited D today and she was screaming and pulling tube with stress and anxiety as told no bed for at least a week.........she is losing all hope

So sad to watch.......we have been to hell and back and both thought funding was big step forward...seems NHS/E112 is much slower than lasts years private ED unit where we got bed in a week

But we had direct funding then but this time E112 so needs to be NHS

She will shortly be transfer back to psychiatric ward if no bed as gained weight
Feels to her she is being punished for gaining
Do not know how else to reassure her as we kept saying leave NG in so you are stable for when funding comes through......now it is through and no end to it all.....................

O Lord..................
Does this hell never end

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floating

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Reply with quote  #105 
I know there are no words eh

Just cannot take this anymore............too much, how do I get D to keep going..............when if she keeps going it lands her back in psychiatric unit and out of medical side if we cannot get a specialised bed, grrrr

Just cannot stop crying...........what can I tell my other daughters too

Why................long road to advocating, media upon media...........funding achieved, then bang

When will luck shine for us........why this hard when it should be blinkin simple

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deenl

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Reply with quote  #106 
Sooo sorry, floating.

I just don't know what to say....

Get on you knees and beg medical doc to find a way to keep her on the med ward? Ring Bethlem every day? Get back in touch with Cork FM? I know you probably wonder how you can go on yourself.

God, just can't believe it.

I hate sodding medical/psychiatric systems that harm our kids more than the ED.

Sitting here trying to think of some words of comfort but coming up blank. So sorry.

(((Virtual hug)))
D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Torie

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Reply with quote  #107 
How can we help get your d that bed? Would it help for us to write to that radio station? Can one of us call the Beltham hospital every day on your behalf and inquire about a bed? Or ... ?

My heart soars when I read positive news on your situation and plummets when the news is bad. It is incredibly horrible what they are doing to your d, you, and your whole family. Just way beyond unacceptable. 

Please let us know what we can do. 

Huge hugs. xx

-Torie

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

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Reply with quote  #108 
No point in contacting media...........we have funding

It is not medical sides fault either

maybe this is just not meant to be..............
This journey, problems, bumps, back luck, hitches call it what you like have just not gone our way......


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Torie

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Reply with quote  #109 
Quote:
Originally Posted by floating
No point in contacting media...........we have funding


Are you sure? They know how to get things done. A bed will come open for SOMEONE soon. We just need to make sure your d is the one who gets that bed. 

Hugs,

-Torie

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

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Reply with quote  #110 
No no no!!!!
Phone every day twice a day to ask about the bed.
The squeaky wheel gets oiled.
Be in their minds, right at the front, ready.
Work out the logistics, ready.
You are so close. Really. You have come so far, been through so much. You can do this.
You can.
Let your d know her mum is the biggest fighter on the planet so she doesnt also give up.
This is just f ing untrue this is pure hell.
But you are so close. Dont stop. Get yoyr daughters to help.
Team Floating.
I wish I could help.
Are you sure its just for that hospital? Bethlem is linked to Kings College Hospital which is a general hospital can it be a sideways step towards Bethlem?
I sure wish I could do something.
Grrrrrrrrrr mega grrrrrrrr.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
hyacinth

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Reply with quote  #111 
Floating,
It is so, so unfair what is happening. Amidst all these horrendous obstacles put in front of you, you are somehow going to have to find the strength to pretend to your D that you are confident everything is going to be OK, because she needs to hear that from you. Who is Christine at Bethlem? Is there anyone more senior you can speak to? If she is the only person, then can you give her daily updates on your D's situation. Does she know that you have been told that the funding is for her place? Can you forward her the press coverage you received and make sure she knows how dire the situation in Ireland is? I don't understand all the ins and outs of this crazy system - there are other NHS places besides Bethlem, so why can't whoever provided the funding look for other places that will have a bed sooner? It is really difficult for hospitals to predict when beds will come free, so it is so unhelpful for them to stick to one place. Can you ask Christine if she can give you advice on how to find your way through this maze, or can we ask on your behalf? You can get through this and it will get better.
Thinking of you,
Hyacinth
K63

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Reply with quote  #112 
Hi Floating, This is just so so difficult. But try to stay positive it must be awful but her name is on the waiting list and it's amazing how things change and your d s name might come up quicker than you expect. I would be fighting to keep your d on the medical ward and then she will be at a better weight when the bed becomes available. Would the medical doctor who looks after your d make a call to the London hospital. Keep saying to your d that the bed will become available and she needs to be ok to travel when this happens . This is a terrible journey for you your d is being fed is putting on some weight you also need to care for yourself I can only imagine how exhausted you must be now .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
deenl

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Reply with quote  #113 
Quote:
Originally Posted by NELLY_UK
Phone every day twice a day to ask about the bed. The squeaky wheel gets oiled. Be in their minds, right at the front, ready.
...
Work out the logistics, ready.
...
Let your d know her mum is the biggest fighter on the planet so she doesnt also give up.
...
But you are so close. Dont stop.
...
Get yoyr daughters to help. Team Floating.
...
Are you sure its just for that hospital? Bethlem is linked to Kings College Hospital which is a general hospital can it be a sideways step towards Bethlem?


Really great ideas Nelly!

Can you gather your strength for another push, floating? Can your other daughters, family, friends, reporters, a solicitor (just to navigate the  system for now) do anything?

Thinking of you all,
D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
floating

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Reply with quote  #114 
There is no way around this, this is the Irish system

For E112 you must name one hospital only and get costs

place name on list

And the funding cannot be transferred to another hospital.........there is no way of getting around this but restarting the funding process all over again and coming off the maudsley list.......so we cannot risk this and wait 15-20 days for answer again

The lady was quite abrupt and no nonsense approach with me,,,,,,,she did not know our journey and that she killed the last bit of strength I had let and the hope I was clinging too or how horrendous life has been fighting to even get psycho to agree to apply for funding or the massive strain it took to go on radio, tv or countless newspapers.................

I worked 12 hour shift today and went to hospital for meeting and witnessed my D screaming in terror and begging me to take her to UK,threatening to end her life and then also get my hopes dashed by a lady on the end of a phone

I have nothing left......no strength at moment to ring or email maudsley and do not want to pee them off ........just too scared
I am just too ill as more than one human can take over last year everyday fighting, fighting...........physically and mentally hanging by a thread...........cannot explain......

Now in front of my child I am super optimistic, full of hope and try to make her believe in everything.........she has NO idea how unwell I am....put on a massive act
Play with her hair, shower and pat her hair dry etc today she put her head in my lap howling and yes I was traumatised but could not look sad or cry

there are no words...........

I have not given up and will die trying to squash this evil monster

BUT we really need a miracle........Please God

Thanks for messages everyone
And like a few of you said a bed may suddenly appear....surely we have to be given a bright light soon
No one can carry being this unlucky!!!!!

xxxx hugs to all

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floating

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Reply with quote  #115 
Just thank you toothfairy..........hug xxx


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mjkz

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Reply with quote  #116 
Okay take a massive step backwards.  You are on the waiting list.  They do not have a bed right now and do not know when they will have a bed.  The funding just came through so now it is a waiting game.  The psychiatrist is off until May 18 so the chances of going before then are pretty slim.  Waiting lists change on a daily basis.  Just because there is not a bed now does not mean that there will not be one when the psychiatrist is back.  Yes, it would be great if they had a bed waiting for you the minute the funding came through but I think that is extremely unrealistic.

Your big hurdles:
Getting the paperwork signed to apply for the funding-check.
Get on the waiting list-Check.
Get your daughter to realistically safe weight to travel-working on it.
Your psychiatrist will have to be around to do the transfer-back on the 18th.
Get the funding-check.

As hard as it is to wait, you are so far ahead of where you were just a few weeks ago.  When the bed comes up you are all ready to go but you know the system does not work fast.  All you can do at this point is call daily and keep your daughter as calm as she possibly can be.  Get your GP to call.  Whenever you call, keep working up the ladder-Christine is the first step.  Next time ask to talk to someone else.  Your best bet is getting your GP to call and also the psychiatrist when he gets back.  There are plenty of people on here who have had to wait for beds with really sick kids.  The whole bed status changes daily so don't give up just because there is no bed today.  Your daughter is in a safe spot right now and as hard as it may be to wait, there is no other choice.

Keep calling and keep working up the food chain.  Get the doctors who are treating your daughter to call and try to make sure there is a bed available so that your psychiatrist can hand over her care when he gets back.  You are not back to square one by any means and just because Christine was having a bad day and chose to take it out on you-don't let that be your reality.  You have worked too hard for this so keep your eye on the prize and keep pushing forward. 

I have total faith in your ability to get her where she needs to go.  I just think your expectations are not as based in reality as they need to be.

I hope this does not come off sounding harsh.  I think every single one of us has had to wait on a bed at some time or another and had a full on panic but you have accomplished so much and you will continue the same.  You fought the system and won.  It may seem that fighting the system was easy compared to waiting now but really the hardest part is over.  Because of your effort and hard work, your daughter now has one heck of a chance that even a month ago she didn't have.
expat_mom

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Reply with quote  #117 
It seems that somehow the right person needs to be made aware of the full details of your case. Not just the person who answers the phone - you need to reach the decision makers. Your case is not the typical case, it is urgent and is the absolute definition of a top priority need. As this facility seems very respected, one would have to think that if the correct people are informed of the situation that they would prioritise your daughter immediately. (And if not, then something is definitely not right in the world!)

How can we find the right people to contact? Who can communicate on your behalf to press on them for you? Who runs the facility? Is there a Board of Directors you can write to? Can you contact Janet Treasure's office?

Can the medical doctor currently treating your daughter make some calls to medical staff or the higher ups at Bethlehem? Find out who to talk to and what criteria must be met to get bumped to top of the list?

Has the government agency that is granting the funding contacted Bethlehem and let them know that they are the ONLY facility you are able to access? How dire the case must be to qualify for funding in the first place? If they haven't, can you get them to?

The fact alone that funding is only being allocated to this facility should put your daughter at the top of the list. Others on the waiting list can be allocated beds in different facilities, your daughter cannot. The person with no other option should get top priority surely?

This facility does sound like the best, in your shoes I would fight to get daughter in here as well.

Just thoughts that strike me as I read your story, so sorry if not useful at all. I continue to pray for you and your daughter, you are doing an amazing job and I have great faith that you will get your girl back. The serenity prayer has helped me a lot in our hardest times (still does) - you have shown great courage to change the things you can, and I pray you can feel serenity in accepting the things you cannot change. I think it is the only thing that has kept me sane, we can only do our best and you have done to this to the highest measure. You are doing everything humanly possible, your girl knows this and it will give her great strength even if she can't show you that right now.

You are doing great. You are almost there. Deep breaths, peace in your heart. Hang in there - you can do this and we are all behind you. God bless. X
Torie

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Reply with quote  #118 
Floating. Dear, dear Floating.

mjkz is right. So many things on the to-do list have been checked off, because you have had the superhero strength and determination to get them done. Check, check, check, check.

One more box to be checked off is all there is to get your d to Bethlem. Just one more. We will help you or you will do it on your own, but it will get done. Your d is stronger than she was (miserable, yes, surely miserable. but stronger.). She will get there.

But YOU. You need to rest, even if you can't sleep, you need to rest. You need to eat. You need a nice long bath and a glass of whatever eases the stress - maybe hot chocolate. Maybe one of Eva's meditation videos. White noise. You see what I'm getting at here? 

Please put that oxygen mask on right away, Floating. You are under tremendous strain (as if you need someone to tell you that!) and you need to take a little time for self-care.

Please.

Never forget that we're with you in spirit. 

Hugs,

-Torie

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

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Reply with quote  #119 
Please floating,eat something and then rest a while.even if you can't sleep,rest.you are doing everything you possibly can and as I am learning that's all we can do.
Be calm.
Be at peace.
Rest.
Breathe.
Everything that can be done is being done,it just takes time.
Be calm.
Be at peace.
Rest.
Breathe.
Tomorrow call and speak to someone different.

But for now look after you.
Love and hugs,

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Sotired42
HateEDwithApassion

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Reply with quote  #120 
Floating, 
I am praying for a miracle. Even if that miracle is just eeking through one more day with your dear D, and then another and another. Praying for doors to fly open for you. And for your own health and spirit. You are fantastic. You have done so much for your D. 

__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
melstevUK

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Reply with quote  #121 
H floating,

I hope you and your d have got over the shock and disappointment in finding that a bed is not immediately available.

Two things:

 - D is making some progress by putting on weight in the medical ward.  Can you ensure that she stays there?  If they try to transfer her back to the psych ward, ask why they would want to place her somewhere where treatment was unsuccessful and jeopardise this progress?

- Can you ensure ng tube stays in place, given that it appears to have helped?

You need to reassure d that you will both be fine and will get through this period.  By keeping ng tube in and keeping d on the medical ward, the hospital is doing what works.  Ultimately, this is what is important - to keep moving forward.

Also, it may be worth pointing out that, even when d does eventually transfer to Bethlem, - she still has a long and hard journey ahead of her.  Just because there is expert care and support does not mean that everything is going to 'fall into place' and d is miraculously going to choose a recovery path.  She will still be resisting the treatment. Please help her to prepare for this - the worst case scenario is that she gets there, finds it all too difficult and discharges herself again.  This would be the disaster of all disasters.  You may not want to tell d this - but please be aware of this yourself.  The path will be hard for her and she will probably pleading with you all the time to come home - you will have to stand your ground.

I am sorry that your own health has taken such a hit - it is par for the course in so many cases.  Please use this time to get as much rest as you can, see your own GP and get yourself into as good a place as possible to keep on track.  You have done fantastically well in the face of so much adversity.  Keep looking at how far you have come - and keep your sights firmly on the future.
Hugs.  It is hell but the only way out is through it. 



 

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Believe you can and you're halfway there.
Theodore Roosevelt.
Torie

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Reply with quote  #122 
Thinking of you, Floating. Hope you're getting some rest. 

Hugs,

-Torie

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

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Reply with quote  #123 
Sending hugs your way today floating!
ooKoo

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Reply with quote  #124 
You have been offered some great advice, Floating. I hope you find some answers among some of the replies.

Please know that we are all standing behind you, wishing you the strength and courage for this last obstacle in your way. You have come so very far. So close to getting there. Just a short way to go, considering how far you have come.

Sending you lots of love and thinking of you and your D. x

__________________
UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Scappy_uk

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Reply with quote  #125 
Floating, if you can find the strength, please contact Bethlem again and ask to speak to Lynn St Louis. She is in charge and is great. Christine does not have the power to make these decisions.
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