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keepfighting

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Reply with quote  #1 
Hello, I have silently been following and reading posts over the last couple of months and have to say a big thank you to all on this forum for sharing your stories and those who have given their advice.  It has given me greater insight to my D's ED.  I have used the resources available on this website to educate myself further on what she is going through.  I thank you all as well as the administrators of this site for their time.

Our story!  As I've learned, it's not only my D's story but my family's story.  My daughter has suffered from major depression and anxiety for a long time but officially diagnosed about 5 years ago.  She is now 20.  The first signs were when she was having difficulty sleeping but there I believe she was hiding many of her symptoms initially until she admitted to us that she was self harming.  In terrified panic we took her to emergency where we were horrified to hear that she had thoughts of suicide.  She was admitted to a public psychiatric hospital where she was mainly sedated rather than treated.  

After 4 weeks or so she was discharged and then had several admissions to a private psychiatric hospital over 2-3 years, trying different medication and receiving ECT.  Our D had several attempts at suicide over these years ending with a near fatal attempt and ending up in ICU for a week with us wondering whether she'd make it or not.  After she recovered she was on no anti-depressants etc for about six months.  It was almost like a miracle.  Something had reset in her brain with this trauma and she was 'normal'.  But slowing signs of depression started to come back and she restarted anti-depressants.  Self harm and suicide attempts started again also which ended up with several visits to emergency departments.  During this period she was sexually assaulted.  This was the trauma that bought the underlying ED to a head.  Through high school there had be underlying issues that weren't obvious to us until later.

AN was diagnosed after she finally realised she needed to go to GP as she had heart pain and was feeling faint.  She was admitted for three weeks where I tried to get her admitted to a private psychiatric hospital which had an ED unit.  Once physically stable she was transferred but 'freaked out' on admission, 'formed' and discharged to our care.  
Without treatment she continued to loose weight again and her health deteriorated so I took her back to emergency.  They could barely get a BP and she had a tachy heart.  She was again admitted and tubed and discharged after 6 weeks.    These ED admissions were last year in 2016.

This year she is on her third admission to the private psych hospital for her AN but she discharges herself before she reaches the desired BMI.  Last time (about 3 weeks ago) she was well on the road to reaching a 'good' maintenance weight/BMI but discharged herself.  The trauma from the SA keeps awakening each time she reaches a cognitive level where she can start processing and dealing with this and this challenges her too much being the reasoning behind her wanting to discharge.  This time she had weekly appointments set up with GP, dietitian and psychologist.  All was going well for three weeks and it all started falling apart again.  

Our D is now is now in psych hospital being treated for ED as she started self harming and had suicidal ideation and had stopped eating. After a week she is again wanting to discharge as it becoming too challenging.  She just wants to come home.  The 'team' are doing their best to encourage her to stay but she just keeps wanting to leave.  As she is over 18 she can make  this decision for herself.  I have indicated that I can't guarantee her safety at home as we both work and not home during the day.  Even so, one of the last self harms occurred while we were at home anyway.  

I really don't know what to do or say anymore.  I am burnt out, exhausted.  I feel that there will never be an end to this.  I don't know what to say to her anymore.  I am doing my best to see that my D is separate from the ED and love her to no end and will do anything I can but hate how the ED has such control over her.  It's difficult to talk to other people as unless they've been in this situation, they don't truly understand and really I don't want to burn out from family and friends too.  My husband is extremely good support but we are both at the same stage.  At a total loss and totally helpless.  

I know so many of you have been here before and and still going through it.  I just feel the need to vent, to look for support or take any advice you may have to offer.  

Thank you all so much.  

skechers

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Reply with quote  #2 
I'm so sorry you've had to go through all of this. I know it is exhausting. I really wish I had some good advice for you, but I'm not sure I do. My d also had self harm and suicidality, but once weight was restored for a while she did much better. Your d has further complicating issues, like the SA.


My thoughts are with you  and just wanted you to know your feelings are understood. ED's really suck.
Kali

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Reply with quote  #3 
I'm so sorry you are going through this. It is so frightening. It seems that your daughter really needs to stay in the treatment center and to really go through the entire treatment and become weight restored and she is of course not able to do that herself because of the illness. So maybe you and your husband and her treatment team can do that for her and put firm boundaries in place. Even though she is 20 you have a lot of leverage.

When my d. was in treatment she begged to come home and I told her that she could not. It was right around the time where she realized that they really WERE going to make her gain the weight she needed and she was frightened. She was 18 at the time and I guess she could have signed herself out but where would she have gone? And with what money? I told her that she needed to stay and finish the course of treatment that her team was advising. She pleaded, she begged, she cried, she said she loved me and would eat at home and I held firm and said no. I told her that when she had completed the treatment her team had advised and maintained her restored weight for 6 weeks and made arrangements with a step down treatment plan for care afterwards, we would welcome her home. That she was in treatment because she needed to be there and she needed to see it through. I told her that I was insisting that she stay because I loved her and wanted her to get well and I understood that is was difficult for her. (My d. was also suicidal and I could not have her at home if I could not be sure I could keep her safe. And I was also out at work all day.) My d. was in the RTC for nearly 3 months and although she was certainly not "cured" when she came home she WAS weight restored and eating and things have gotten better little by little as time goes on, although I won't say there have not been some pretty serious bumps in the road along the way. She spent a month in a PHP program and then 6 weeks in IOP and then stepped down to a team of dr., nutritionist, psychiatrist and therapist. She is continuing her college education now and is more engaged in her life and has hopes and dreams for her future and has friends, and has been out of the RTC for a year. 

If your d. is still suicidal and depressed on the current meds she is on has the hospital discussed changing them?
If you are in the US are all the HIPPA forms signed so that you and your h. can participate in her treatment?
Is there family therapy available for all of you while she is there?
How much weight does your d. need to gain in order to be weight restored?

Sending support,

Kali



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Reply with quote  #4 
Welcome to the forum. 
It sounds like you have had a very hard battle over a number of years already. Your D staying in treatment at present sounds like it is essential. Trying to use any leverage you have that will keep her there, and get you involved in her care is going to give her the best chance of recovery. Of course she is frightened when she starts to gain weight, it is normal, but it still needs to happen.

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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.
mjkz

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Reply with quote  #5 
My daughter has the same kind of complicating issue and it does truly complicate things.  As one gets better, the other spins out of control.  I agree with Kali's approach and have used that often with my daughter.  She knows she can't come home and will get no financial support, etc. unless she follows her treatment team's recommendations.  She needs to deal with both and needs to be at a good weight to be able to do it.  If she leaves every time she gets close to a good weight, she will be stuck in this vicious circle.  I have never regretted making my daughter stay and finish treatment when recommended to do so. I have ALWAYS regretted letting her come home before she was ready and before the team recommended it.
keepfighting

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Reply with quote  #6 
Oh my gosh, thank you all for replying and for your words of comfort.  It seems as though we have very similar stories.  

I've just come home from spending the afternoon with my D as she had 'leave'.  Her mood and behaviour was much better today and she also apologised for how she spoke to me.  We had a lovely time by grabbing a coffee and having our nails done.  This seems to be our little ritual now which I love.  Mother/daughter time.  

Yesterday when she was wanting to leave I did say to her that I refused to take her home which wasn't received very well. I will stick to my guns with this one unless the psychiatrist advises otherwise.  I understand she wants to come home but not yet and some of you said that once weight is restored and she starts addressing the underlying issues I believe the best place for her is in the ED clinic.  

She has also been on a multitude of antidepressants in her time and the psychiatrists don't see a need to change them.  It's more a case of her accepting that she has to do the hard work.  Also as I have indicated to the 'team' that she is a danger to herself if she is discharged they could always 'form' her under the Mental Health Act but the clinic she is at presently is a voluntary unit so she would have to be transferred to a public psychiatric hospital and to tell you the truth, she would be in a much worse situation.  Very complicated I believe.  

I'm not 100% sure but I think she needs to gain about 5-6kg to be at a BMI of 18.  Also I think the main trigger this time was when she found out her weight.  She had always been blind weighed but at a GP visit she wasn't and the GP also told D what the ED psych wanted her weight to be and she freaked out.  Until then she was find not knowing her weight.  So on discharge I will recommend that she continued to be blind weighed.  What about your D's or S's?  Do they know their weight?  As its a numbers game for them is it possible that this information isn't given to them until they are further into their recovery?

The clinic our D is at here in Australia has a 'Parent's and Carer's' group every second Sunday so I'll go again to that as it was very helpful last time.  

Thank you once again
keepfighting

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Reply with quote  #7 
Toothfairy, thank you so much for those links.

 I had seen a couple of those videos before whilst trying to educate myself.  The one by Laura Hill really spoke to me in relation to the noise in an ED's patient's head.  I had seen it externally in my D before while the ED had control of her and she had a bit of paper and was writing down all the things the ED was saying eg: I'm fat, I don't deserve to eat, etc.  Seeing it explained by Laura Hill really spoke to me and has helped me separate the ED and my D and how much control the ED has over her.  

The other point in the 'State not Weight' video that interested me was how a recovery weight should take into account what build they were before the ED.  My D has always been below the 'bell curve' since she was born. I was still having to buy children's clothes for her even when she was a teenager as she was such a small build.  Is this something that should be taken into account when determining her optimal recovery weight where she is functioning?  She has never been at the weight or BMI that the ED team are plotting for her.  This had crossed my mind recently and thought surely must play a part.  Then I thought maybe I'm just making excuses for her.  My 18 year old son is taller than her and is slim as a bean pole and eats and eats.  I know it's a little bit different as he is a boy still growing but it just shows that genetics play some part.  Even though I am round around the edges now I was always a smaller build.  

Two weeks ago before this relapse which was triggered by finding out what her weight was and what they wanted her BMI to be, she was doing well.  Eating all three meals and three snacks.  Had even eaten take away with friends which was a very healthy option which she chose and researched herself before going.  There were no ED behaviours during eating and was happy to sit together as a family to eat and followed the rules of sitting with us for half an hour after meals.  So at this point her state of mind was on track.  Definitely not recovered but things were moving in the right direction.  She was also independently going to GP, dietitian and psychology appointments every week.

So I suppose this brings me back to my main point.  What is my D's ideal weight to achieve a mind or state ready for recovery?

I'd be interested in anyone's thoughts on this?

PS:  I have spent hours and hours reading over everyone's forum posts and the advice that you all give.  I have learned more from this forum than anywhere else on the internet.  These are real life stories in real life situations rather than facts and figures.  So once again THANK YOU
mjkz

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Reply with quote  #8 
Quote:
So I suppose this brings me back to my main point.  What is my D's ideal weight to achieve a mind or state ready for recovery?


I think that is different for each person.  I know many here have had to get their kids back to preanorexia weight at the very least and often times higher. A lot of health professionals set BMI goals low and while our kids may look okay, they are still very eating disordered.  Weight gain goes first to the abdomen and it can take 6 months to a year to redistribute so even when you have found a good weight, she will look different six months to a year later.

My daughter had a very hard time with all the weight going to her stomach but it really does redistribute with time.
Torie

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Reply with quote  #9 
Unfortunately, I don't think there's any way to know in advance how much weight will be enough.  You can guess and hope, but until your ED-kid has been at that weight for a while, you can't really know.  As mjkz said, many if not most or all here have needed to restore their kid to at least the pre-AN weight ... generally thinking it is prudent to add another 5-10 pounds because you really don't want them hanging around at the lowest possible  recovery weight.

Once they are at a proper weight - for them - you will usually start seeing improvements in state within a few weeks.  Maybe just teeny tiny baby steps of improvement, but improvement nontheless.

Please keep us posted. xx

-Torie

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Reply with quote  #10 
We of course cannot really say what weight your D should be, but if you have any old heights and weights, you can plot them on mygrowthcharts.com. This will at least give you a vague centile as to where your D should be. Note that even though your D is 20 and now runs off the charts, most kids do continue to gain weight until early 20's. Almost certainly since your D has been ill for a number of years, she will ideally need to be a higher weight than she has ever been before. 

Your D seeing her weight and freaking out is a sign that she is still not where she needs to be. You may also like to read some of the threads on extinction burst, talking about how as weight gets closer to where it needs to be sometimes the anxiety and distress increases. This is not a reason to stop however. 

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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.
keepfighting

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Reply with quote  #11 
FoodSupport_AUS, even though it is a very complicated disease at times the behaviours and response to those behaviours are very simple (still very challenging though).  That the same behaviours exist in animals as in humans.  WOW!

Every little piece of information I learn is giving me a stronger belief in myself, that I can support my D and beat the ED because now I know the ED so much better.    This is exactly where my D is presently.  Her ED beliefs are being challenged and I feel we had a small win on Friday against the ED and our D telling her that she can't come home!

My eyes are bleeding from the amount of reading i've done over the last day or so.  Keep it coming!
Kali

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Reply with quote  #12 
Hi Keepfighting,

I'm glad you were able to let you d. know that she needs to remain in treatment!

As far as her weight goes, are you able to go to her pediatrician and request a height/weight chart based on her yearly checkups?

If you have her weight/height data, you could try plotting out her growth curve on this chart:

https://www.cdc.gov/growthcharts/data/set1clinical/cj41l024.pdf

Pay special attention to her height and weight percentile pre-eating disorder and see where she plotted then. So for example, if she was at a 50% weight for height % before the ED at age 14, her weight goal could be to return her to at least a 50% percentile weight for the height she is at now, and perhaps even more than that depending on her state. Be aware that her state will worsen when she is first weight restored and that is part of the illness so it may take awhile for her state to improve. (a year or more)

Also many of us here have found that a BMI of 18 is not enough for our kids to fully recover and the BMI has to be brought up higher. It is certainly a first step though and an immediate goal, to help get your d. to a bmi which is not considered dangerous.

keepfighting!

Kali

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keepfighting

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Reply with quote  #13 

Hi everyone,

Just want to give an update and ask a couple of questions.  My D discharged yesterday from treatment clinic after two weeks.  Her weight is good with a BMI of 19.2 which obviously she's not happy with but I think that she not longer has the NGT for night feeds she may drop a few kilos so its probably good for her to be heavier than she normally is. Much of the weight is around her stomach.  From what I understand that will redistribute over time??  She wants to join a gym for to tone up and for  fitness and health.  I'm a bit skeptical.   I suggested she bring it up with her dietitian.  I told her that she may have to increase her intake but we'll see what D says.  Anybody else had similar experience.

Her mood is very flat as she is 'fat' so we are trying to keep you spirits up, distracting her and whatever else we can think of.  She'll continue to see Dietitian, GP and psychologist weekly and will start an outpatient DBT course.  Once she's completed this she'll apparently be in a better place to deal with sexual assault trauma.  

I've ordered a couple of books that were suggested and watched all the video links (thank toothfairy)

Oh, and all have agreed for her to continue to be blind weighed at this point in time.

Many thanks

Kali

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Reply with quote  #14 
Hi keepfighting,

Quote:
She wants to join a gym for to tone up and for  fitness and health. 


After our d. was weight restored her dr.s and team told her that she could not exercise and she didn't for a year....
Perhaps your d's team will give her similar advice. 

The weight around her stomach area should redistribute with time.

But it is great that your d is at a bmi of over 19 right now! Keep fighting!

Kali

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Torie

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Reply with quote  #15 
Hi  - I think it's good that she has agreed to be blind weighed - personally, I would try to keep her weight up as best you possibly can.  There's really very little downside if she is a little above the absolute minimum needed, and a huge downside if she needs this full amount of weight but then loses some.

Many here have found that the professionals underestimated how much weight was needed.  I can't think of anyone whose kid was weight restored to too high a weight.

Similarly, I would do my best to discourage exercise.  Maybe you could take leisurely walks with her, or gentle yoga is OK.  You are correct that if she starts any exercise at all, the calories will need to increase accordingly.

And yes, the weight first settles in the belly and face and then redistributes.  It takes a while, though.

Please keep us posted. xx

-Torie

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keepfighting

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Reply with quote  #16 
Hi Guys

Its been an up  and down road since D discharged from hospital.  She had been eating 3 meals and 3 snacks, a small morning walk (which they had been doing in the Clinic) but now again, at the 2 week point things are changing.  First there were signs of ED actions during meals times, feeling sick so couldn't eat her 'normal scheduled' meal along with her mood dropping.  Actually her mood was fabulous in the morning, full of energy, she was happy with a spring in her step but as the day went on the mood dropped so much so that over the last few days she's started to refuse to eat.  The whole 'I'm fat', 'I don't deserve food', etc etc.  Of course I've now read or reading 'Skill -based Caring for a Loved One with an Eating Disorder' and 'Eating with your Anorexic'.  So now I'm an expert!?! lol  I know all the right things to say and how to say them.

But, it doesn't make it any easier.  Last night she attempted to self harm in several ways, begged me to give her the pills to allow her to die as she just couldn't do it anymore.  She just wanted to die.  When we would do as she requested she became aggressive to me and my husband attempted to stab herself in the neck until I wrested the scissors away from her.  We ended up calling the Emergency Mental Health Line who called the police also as she was in danger of hurting herself and us.   When she found out we rang for help the aggression only escalated.  At some point she collapsed on her bed and I managed to talk her into taking her night meds which included some sedating meds hoping this would settle her.   She eventually agreed and with complete exhaustion and the meds she went to sleep.  

The police came and saw the quiet, sleepy 20 year girl and two very upset parents.  We went through the story and coordinated with the emergency mental health practitioner.  Once the first lot of police were confident that no-one was in danger they left and within minutes the EMH practitioner with police arrived.  Again, they couldn't get much out of our D as she was sedated but with our reassurances they were happy to leave it until today when we would have another MH person visit us and make an evaluation.  

I slept with her last night and when she awoke she apologised, that she couldn't help it (which would be the Borderline Personality Disorder).  She couldn't remember certain parts of last night but was very, very sorry.  Well then, she HAD to get up and go for her walk!!!  It was probably the ED saying this.   I said NO as this privilege had stopped until she ate again. She said she needed go to get rid of some unwanted energy so I agreed but went with her as I'm not confident to leave her alone and it also gave me an opportunity to see where she walked and for how long and also what pace she was walking at.  D did want to walk further than I thought she needed to and cut the walk shorter, initially she fought it but eventually she agreed.  She was not happy with me thought.  It's all right I've got tough skin.

For breakfast she didn't eat her prescribed breakfast but did eat some muesli and yoghurt which is about half of what she should have had.  Now she's asleep!  Peace.

Ongoing treatment.  Weekly GP appt, Psychology appts, dietitian appts and monthly psychiatrist appts.  Starts DBT course in one weeks time.  

Me - I'm physically, mentally and emotionally exhausted.  Sorry for the long rant.  It's a way of me venting.  

Any thoughts on things I could've done differently or something I could try.  Any advice at all.  As I've said I've watched the video (thanks to everyone for these links) and I've read/reading two books, done all the research I can.  But in truth living with it is just so darn hard.

XOXO




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Reply with quote  #17 
Dear keepfighting,

Vent away thats one of the things this forum is for and we have in some way all been where you are now and understand the need to vent.

You have done great work with your D and especially with the recent events. Well Done!! I would say the score to be ED zero mum one. Inside your D will be saying thank god mum is with me and fighting ed when I cant. Many of the mums here report that once thier child is recovered the child says I was in there but could not fight ed thank god you did it for me.

I think you have done a great job and not much I would see that I would change. We had similar stuff happen at our D's relapse she is now recovered for several years and is engaged to be married. Some thing we never thought possible during her relapse.

You will get there too.


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Torie

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Reply with quote  #18 
Quote:
Originally Posted by keepfighting
  Well then, she HAD to get up and go for her walk!!!  It was probably the ED saying this.   I said NO as this privilege had stopped until she ate again. She said she needed go to get rid of some unwanted energy so I agreed but


I think your instincts were spot on when you told her no walk until after breakfast.  

If she needed to "get rid of some unwanted energy," well, perhaps that would provide some motivation for finishing her breakfast.  ("We can go for a walk as soon as you have finished your breakfast.")

It's so hard being the bad guy all the time.  Ugh ugh ugh.  

But it takes a thick skin indeed to beat ED.  This vile illness is so crafty and will use your maternal sympathy against your d.  I despised having to rule with an iron fist regarding nutrition and exercise - I'm such a softy that was really torture for me.  But I knew that if I couldn't make myself lay down the law, she would need a higher level of care where someone else would do that.

Hang in there.  You can do it!  xx

-Torie

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Foodsupport_AUS

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Reply with quote  #19 
Keepfighting it sounds like a terrible night. What follow up have you planned after the dramas of last night? Calling for help in those circumstances is essential. It sounds like your D needs much more intensive care to manage her behaviours than you are getting. Your D's behaviour sounds very worrisome and I agree that I would be very worried with her going out alone. It is a holiday weekend the world over but I would be trying to find out what more help you can get sooner rather than later. 
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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.
keepfighting

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Reply with quote  #20 
I appreciate all of your replies.  It has been a long, long day.

I've been on my d's tail all day, haven't let her out of my sight.  The MH Emergency Unit team attended late this afternoon and talked with D.  One thing we've worked out is that they think that this severe behaviour is due to stopping the Olanzapine cold turkey.  She was on 7.5mg three times a day and because one of the listed side effects is 'weight gain' she wanted to stop it.  He Psych agreed but in hindsight, as a non professional,  maybe she should have come off it slowly.  We can't be certain but this pure want to die is unusual for her.  

We agreed to keep her at home over the Easter break as the other option is a public psychiatric hospital which I've seen before and I'd rather be responsible for my D than put her there.  

Our D has agreed to restart Olanzapine 7.5mg once a day (nocte) until I can contact her private psychiatrist on Tuesday and I will be insisting on an urgent appointment to see him.  

Everything has been locked away, so she is 'safe'.  I am sleeping at the foot of her bed and tomorrow is a new day.  She ate some hot chips and some yoghurt for dinner so at least she is getting some basic nutrition at the moment.  

She is knocked out with her nighttime meds now so I intend to get some sleep.

Thank you once again for listening.

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