F.E.A.S.T's Around The Dinner Table forum

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deenl

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Reply with quote  #26 
Hi Perigrine,

It's lovely to hear from you even though your daughter's situation remains serious. I am amazed by your persistence and diplomacy in continuing to educate the medical personnel involved. And by your continued advocacy on behalf of your daughter. I can only imagine how difficult and exhausting your long journey has been and I hope you are able to balance this caregiving with other aspects of your life.

Sending you warm wishes and lots of respect,

D

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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.
peregrine_USA

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Reply with quote  #27 
So.....here we are inching towards the end of June. She was admitted to the ER and from there to the same hospital complex three times in a little over a month and three times - the third time is approaching in few days - she has been discharged at too low a weight for her to do well unless we try somethng different.

However, in the midst of all of this, there is some good news:
1 - her medicaid insurance company has been an absolute Godsend by approving additional days needed, paying close attention to the treatment she is receiving, and has gained important insight into eating disorders. I am so very grateful.
2 - the latest visit to the ER went like clockwork and she was in a room with an IV in her arm, lab results back, and electrolyte treatment begun in under an hour!!!!!!!!!!!
However, what I had considered to be the placement of choice here following the ER and hospital stay described in #2 no longer seems to meet the criteria of a psychiatric hospital knowledgeable about the bare minimum of the needs for someone with an eating disorder. The problem is partially the lack of funding in our State for adequately staffed psych hospitals. But this time around there seemed to be less of an interest in giving her the support she needed to regain weight. Burnout on their part? It is hard to say.
She refuses inpatient treatment of any sort.
I am therefore trying a new tactic based on the paper written in 2015 by Touyz and Hay titled SE-AN: In Search of a New Paradigm. Our goal is to provide her with a different model - her own place decorated in a fashion that speaks to her as "home" to which she can return each time after she needs treatment for her symptoms in the hospital, intensive outpatient therapy and wrap around services while providing her with small steps and goals to increase her weight so she can pursue her goal of a special trip with me to visit where her father lived before his untimely death earlier this year. I realize it is a long shot but her life has been awful for so long and full of, as the authors write, "loneliness, despair and an empty sense of self." We are looking at alternative modes of treatment. I am hoping that the trials Michael Pollan writes about in his new book might be another approved way to help her "re-set." Who knows. Please say a prayer for her now that you have read this.

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mjkz

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Reply with quote  #28 
Peregrine, so good to hear from you.  What you are doing at her place with intensive support outpatient was the key for my daughter.  She is doing well enough that we're talking about moving out!!  We had to build a life that she wanted to live for before she was able to make any progress.

Are her admissions due to malnutrition or purging?  Any chance you could get her into a group home or at home support to try to prevent that or to keep her eating?  We actually had hired help live in and my sister in law to help essentially baby sit 24/7 and did tube feeds at home at one point to keep her alive.

Quote:
My response in writing was to note that there is a fine line between being a parent advocate/guardian and something resembling enabling and I commented as politely as I could that the person who made the remark was clearly ignorant about eating disorders. I invited the person to step forward so I could provide her or him with written materials and a chunk of my time. No one has stepped forward.


One thing I have learned with charting is to find a page that is half full (i.e. the page can't disappear from the chart or get "lost") and put my response in writing on that page.  Notes I would take in often got misplaced or lost but since I've started putting the notes in writing on the bottom of other notes in the chart, surprisingly no lost notes now. [biggrin][thumb]
peregrine_USA

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Reply with quote  #29 
Thank you for all these comments and a surprising bit of reassurance because this is something we have not voluntarily tried before. She is past her mid-40 mark and is very tired of being under someone else's thumb re her daily activities yet at the same time does need guidance and reassurance when something comes up that causes her a lot of anxiety.

Yes, she has lived in the gamut of different residential set ups - at our home periodically until about three and a half years ago, in patient, psychiatric hospitals, residential treatment centers, group homes, semi-independent living, locked step down psychiatric facilities and even a nursing home. When she was healthier and much better nourished, she fared quite well in her own apartment for months at a time before backsliding. She hates not having control of her life and relying on others to provide her medications. So, we are trying this with the help of her mental health team, outpatient treatment, 12 step meetings. Thanks to a visit from Jenni Schaefer to Tucson a few months back, I was introduced to the new Eating Disorders Anonymous book that was just oublished and I bought us both a copy. A few minutes ago she called me all excited because she found a couple of personal stories in the book that she connected with. I am so glad she is reading it.

Her hospital ED visits are primarily due to purging but she is also seriously malnourished. I am encouraging her to use the exchange lists developed by her nutritionist. The followup hospital stays are to help her regain the weight she needs to function better.

So, this latest chapter starts in a couple of days. I am hopeful and also as prepared as I can be for the possibility that things may accelerate. Medical help is literally next door which is a good thing. But the bottom line is that she must step up, too, amd reach out when she needs a leg up. That is the hardest thing.
Thank you for your note mjkz!

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Peregrine_USA
sk8r31

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Reply with quote  #30 
Just wanted to say that you are in my thoughts and prayers as you take this new step forward with your d.  Your steadfast love and support through all the ups and downs are awe-inspiring.

With warmest wishes for a new path ahead,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Torie

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Reply with quote  #31 
Peregrine, Thank you so much for keeping us updated.  Reading your posts always makes me think how lucky your d is to have you in her corner.  I will keep you both close in my thoughts.

Hugs xx

-Torie

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

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Reply with quote  #32 
Thank you Torie and sk8r31. Tomorrow is going to be a long day, I think.

Peregrine_USA

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Peregrine_USA
sk8r31

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Reply with quote  #33 
When time & energy allow, do let us know how all is going.

Thinking of you with warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
melstevUK

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Reply with quote  #34 
Hello Peregrine,

I think of you and your d often and I always like to hear from you.  You have been amazing in your resilience and I feel a real sense of hope and the possibility of change on the horizon in this latest update.

Not least because of:

"so she can pursue her goal of a special trip with me to visit where her father lived before his untimely death earlier this year."

I am so sorry to hear about this loss, it must have caused your d extra unwanted distress.  

I really believe that you cannot recover from an eating disorder without something to look forward to, which can give a reason to fighting all that anxiety and terror that the process of eating and weight gain involves.  I think there is nothing better than travel for helping patients to dream because travel (for me and probably for others) includes the notion of escape and probably the idea as well of moving outside the usual confines of the illness.  

I hope the trip can give your d the motivation that she needs to face down all those fears and get to a stage where she is able to function more independently and give herself some choices.  She really deserves for life to move in a better direction.  

 

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

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Reply with quote  #35 
Hello, everyone.   I do not know where I am going to go with this update.   My d has now been in her own apartment (and she tells everyone she has loved having it) for two months and as we thought might happen (but did not know what else to do given her demand that she not live in a group home, that she not be hospitalized against her will, and that she can choose how to live what remains of her life), she has steadily lost ground. 

On the bright side of things, she has kept herself out of the ER for electrolyte replenishment by taking her daily rx's of electrolytes.  However, she has persisted with her substance abuse and is finding herself hardly able to eat at all (I am providing her with her favorite foods but she does not want company while she eats because she doesn't want us to see that she is not eating but either throwing food out or giving it to others) so she has lost a lot more weight and is approaching a critical state.  She has balked at improving her dentures so cannot chew.  She went into the hospital earlier this month but the doctors refused to keep her for long since she will not engage, they say, to work to gain weight and get into recovery.  The underlying message is that there are too many other people needing beds.  The obvious reason is that they do not understand eating disorders and have no desire to try with her any longer.   Not only that, but they refused the opportunity I arranged with the help of two precious people here at FEAST to consult with a leading person in the field.

Meanwhile, her team agrees that she needs a higher level of care which she refuses and no inpatient/residential treatment center  will take her unless she is willing to go.   So we now are waiting for the crisis that surely will soon come that will lead to her hospitalization but beyond that I do not know.  She lately has said over and over again that she is so very tired and just wants to sleep.  In fact, that's pretty much all she does these days - gets up, walks to the nearby convenience store for a cup of coffee, comes back to her place and naps and the cycle repeats.   At the same time she pursued acceptance into an outpatient treatment program but also told me that she is making these decisions and saying what she is saying because, she says, she knows that is what we are all hoping to hear.   But her body cannot take much more of this and there is no quality of life.

So, I do not know.  

I close again by saying as I always have, do what you can early on to get treatment for your precious child to get him/her out of ED's clutches.  



 

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Peregrine_USA
Mamaroo

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Reply with quote  #36 
Hi Peregrine

Thanks for the update. I see from your previous posts that your d is about the same age as me. She is very lucky to have a mum like you who cares and support her. This is a very hard battle and it is also hard on those around the ED sufferer. I'll keep you and your d in my thoughts and prayers and sending you lots of hugs.

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Foodsupport_AUS

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Reply with quote  #37 
Thank you for your update. Wishing I could send you more than my thoughts and support. Take care. 
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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.
HateEDwithApassion

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Reply with quote  #38 
I'm so sorry to hear this. This heartbreaking cycle is so hard when there are no positive markers behind or up ahead. Just know the community is here for you to vent and cry with. 
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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
Torie

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Reply with quote  #39 
Peregrine, I'm so sorry to hear this.  Ugh.  It is so very unfair what this vile illness does to the sufferer and the whole family.  Thank you for taking the time to let us know where you are.  I hope you know we are always with you in spirit.  xx

-Torie

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

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Reply with quote  #40 
Hi Peregrine, I'm so sorry for you and your d's situation. I will keep you and she in my prayers.  XO


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Francie

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Reply with quote  #41 
What a tough year you have had -  I am so sorry for everything you and your D have been through.  I hope in all of this that you are able to spend some time on taking care of yourself.  Sending you hugs and prayers. 
toothfairy

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Reply with quote  #42 
I am so sorry to read this update, so so hard.
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