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Torie

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Reply with quote  #76 
Yay!!  So glad to hear about the glimmers of hope!

It's really hard to track progress when their behavior is so erratic from day to day.  But it sounds like this is maybe a higher point than you have seen recently and also two days in a row of improvement, so I think that's really encouraging.  Sucks that it is't linear and could go right back downhill, but still, this is really encouraging! xx

-Torie

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

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Reply with quote  #77 
Hi Hebrides this is such a nice post to read and so glad you can at last have some respite!  if she can eat lunch that is one battle won and if there is less resistance with NG feeding that is something else that she can do. If she goes backwards again don't worry because at least you know that that she is capable of eating and being less resistant. I'm hoping this continues to go upwards for you.

Best 
Xxx
K63

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Reply with quote  #78 
Hi Hebrides, it's great to see some light and that your d has eaten with less resistance. Her music hopefully will be good too in helping her through this . It's good for you to have a conservation and a joke with her . Enjoy these moments. As she gets more nourishment her brain will heal .
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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. 
myson

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Reply with quote  #79 
Hi, I'm a new member and have just read all your posts and support replies.
I hope your d is still moving forward. You have been so strong. I find it helpful to find people that understand this nightmare.
I hope that one day you get to have your weekend away. You defiantly deserve it.
Take care xxx
Hebrides

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Reply with quote  #80 
Myson - thank you, that's very sweet of you. 

Reading back my post and your kind replies (thank you Torie, Toothfairy, mjkz, K63, Sotired, Izzo) from 12 days ago is strange - those positive glimmers of hope seem much longer ago...

Turns out that the reason d ate lunch that one time was solely to do with her aversion to odd numbers ie she had to make sure she had had an even number of ng feeds that day, or something along those lines. I felt such a slump in my spirits when I heard that... So over the last fortnight there's been no more eating, continued and increased resistance to feeds, continued tying of ligatures (usually when she is getting changed - apparently a few days ago she tied her (new) trousers so tightly round her neck they had to be cut off). Last week the plan was for her to wear a "safety suit" from 11pm - 8am; at ward round yesterday that was upped to safety suit all the time, and she's back on 1-1 obs yet again. I discovered this evening this means she has to stay on the HDU area of the ward - not sure if that means she can't have contact with other patients. I am finding it hard to imagine these scenarios - partly because it is so distressing - but I'm fairly sure she is having a huge amount of time to ruminate and give AN completely free reign in her head. I will visit tomorrow - and hope I can get a few minutes with the ward manager. It also sounds like d is (not surprisingly) finding the conversations of some of the staff hard to tolerate - along the lines of "I really need to lose some weight"/ "I had a good day yesterday - I only ate two meals"... I know it isn't a specialist ED ward, but I might have hoped for a bit of sensitivity around a patient with severe AN who is clearly in a very dark place. Sigh.

H and I are both feeling pretty hopeless and utterly worn down. For so long it feels we have kept the light of hope alive for our d, but now it feels that hope of recovery is as distant as ever. I fear she is heading for a life in and out of hospital at best; at worst our worst nightmare could be realised and we might lose her.

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...
Torie

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Reply with quote  #81 

Hebrides - I'm so so sorry.  Ugh.

I think you mentioned a while back some suspicion that your d may be ASD - is that correct? I wonder if there is anything to be gained by asking the good folks here for input regarding ASD kids, even with it just a question mark in your d's case.  Perhaps there might be some suggestions that could fall into the "what harm could it do?" category.

I'm sorry I don't have more useful ideas - I feel so bad for you with your mum's issues on top of your d's and never even getting to take your little holiday. Please know I'm keeping you and your d in my thoughts.  xx

-Torie

 


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

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Reply with quote  #82 
Hi as someone with a D that is finding the behaviour side of her Ed very difficult I feel very much for you - you sound like you are losing hope but you are very much in the trenches and I also Feel despair like this .I can share some comforting thoughts that some of the staff have told me from My Ds unit -

- each young person takes their own time to get better and if they are slow this is tough for us but they will get through it - they are progressing at their own pace.

- your D may be going through a standoff with the unit trying to prove that they cannot manage her, not working with them etc but your D is intelligent and once she knows that she isn't going anywhere at least for now - this phase WILL end - it's just that we don't know when.


- you know where my D is so if you think she's in the wrong place please push possibly for the option of this unit as they WILL handle complex presentations.

I think of you a lot -

Izzo

Xxxxxxxxxxxx
K63

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Reply with quote  #83 
Hi Hebrides I I can't offer any advice just to say I am thinking of you and when my d was in ip and really sick I thought she would never gets better but when her brain is nourished and healing will take place she will . Don't give up hope it's all we have .
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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. 
melstevUK

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Reply with quote  #84 
Hebrides,

I am so utterly sorry to hear about what is happening and I can understand your despair.

Has the hospital been managing to get your d's weight increased at least?  How are things going on that level?   As hard as it is. please try and look confident in front of your d and keep insisting that she 'chooses' recovery.  I know she is not 'choosing' to be ill but in her own head she thinks she is refusing to eat of her own accord and not because her brain has been 'hijacked' into making her do this.
I can understand your utter frustration about the comments the staff are making - I would bring this to the attention of the ward manager/sister because this is not acceptable or professional behaviour around ed patients.  It may be that the staff are just not thinking - in which case they need to be made to think.  Anything which may distract from your d's recovery must be stopped and you have a right to express your concern.
Keep in mind that you need to stay in a 'zone of wellness' into which you are trying to pull your d.  As harrowing as everything is she needs to know that she cannot affect your resilience in standing against the illness.  Say whatever it takes to get her to accept that this cannot go on and that you want her to be well enough to come home for a weekend.
Can you work towards this as an initial focus?  Your d must miss being at home and perhaps getting home for even a day (although I don't know how far you are from the hospital) will be a motivator.  Wellness is just too difficult and scary for her right now - but it may help to work towards something which feels easier to achieve initially.


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

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Reply with quote  #85 
Really feel for you Hebrides. The cruelty of this illness. You have the joy of seeing a little of your real d and then wham! ED rears it's ugly head. It's so tough to keep strong but you have to do it and I know you will. The ED will be looking for weakness and your real d (because she is still there) will be looking for strength.
Thinking of you both xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
Foodsupport_AUS

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Reply with quote  #86 
Thinking of you. This is an incredibly tough illness for patients and their families. It is heartbreaking to watch her struggle so much. Keep believing that things can and will get better.
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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.
Hebrides

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Reply with quote  #87 
As always, fellow FEASTIES are so good at saying the right things and lifting spirits when they are low - thank you all so much.

I did indeed talk to the ward manager about the dieting talk and she took that seriously - hope the message gets passed down to staff (was healthcare assistants rather than nurses).

Torie - you're right, assessment for ASD did happen, but although some traits were identified (based on life pre-ED as well as the past 3 years), the psychologists on the previous unit felt they were not massively significant. Of greater importance and concern is the BPD diagnosis, and I have asked the ward if there is a possibility of DBT.

We are due to see d this afternoon - the last couple of days she has been hugely distressed. Through several phone calls on Friday she was in tears, convinced her beloved rabbit is going to die because she has no way of tying a ligature at the moment.... This sounds (and is) completely irrational of course, but we know her rational mind is on a rather extended holiday... As if that wasn't enough, my mother fell outside on Friday, gashing her head badly. I spent all of Friday night with her in A&E which ended with her being admitted. Oh dear... Thankfully the ward staff are being very understanding about my situation, and are totally on board with being mindful of mum's dementia (she's been telling them all sorts...). The plan was to get her home today with an intermediate care package (i insisted on that), but Easter Sunday isn't the best day to be getting that set up, so discharge won't happen till Monday. H & I are due to have a couple of days away Monday to Wednesday (typical!!! remember Florence?) but mum's neighbours are insisting we should still go and the ward has said they will make sure she will be safe at home till we get back. I desperately need to get away, but am trying to quell those inevitable feelings of guilt and selfishness... The last few days have been even more stressful than our "normal" level of stress and I know being in the fresh air and getting some walks in with h will be restorative for us both, if I can manage to keep the anxiety in check.

I know I won't want to come home on Wed evening!

Wishing you all some peace at Easter.

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...
myson

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Reply with quote  #88 
Hi I hope you do go away. You both deserve it. Guilt is a horrible thing but you still need a life also. My dad has dementia also and I tried to say to my son please don't let grandad never experience you better. I was hoping for a turning point.
I'm sure sometimes your head is so full of all these worries going on.
But a person can only take so much. You need this break to find the things you enjoy.

Take care
Xxx
Foodsupport_AUS

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Reply with quote  #89 
It is exhausting just reading all the things you are trying to juggle at the moment. I also hope you do get away, it sounds like things can wait to fall apart till you get back, and I agree you won't want to come back. 
Enjoy the trip. 

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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.
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