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

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ninhursag Show full post »
Torie
ninhursag wrote:
Does the Ohio program give you a contract? I'm just really not wanting to disrupt our balance of power here more than it has been. But on the other hand, her illness is doing that all on its own and I'm finding I have to take on more and more. Is there a way to let me do the food thing so she can help me with other life aspects? Do they help with that?


I'm just guessing on this, but I bet they help you and your wife create a contract. Each contract is different. I can appreciate that you don't want to disrupt the balance of power any more than necessary - one of the tricky aspects of addressing adult sufferers I would imagine. I don't know as much about dealing with adult, but I would imagine it is like dealing with adolescents: We stress that this is TEMPORARY and that we, too, look forward to being able to give back the reins to the sufferer. 

This vile illness makes them IRRATIONAL about food/eating/weight/size/shape. It's a brain-based illness, and they literally can't think rationally about those topics. Since your partner has more brain maturity, perhaps she is not quite as extreme on that as adolescent sufferers (?), but I'm sure she's at least mostly incapable of rational thought on those topics. So yes, that does create a need for a drastic power shift in the area of anything food-related. 

It sounds like she also has anxiety issues. (As sufferers are prone to, especially when AN is active). You're probably already doing this, but have you made a list of non-food related, non-anxiety producing contributions she could make? Maybe laundry, cleaning, child-care? Has she ever had a low-stress job or could she think about finding /creating one? 

You've probably already thought about all this already so just ignore what's not useful. Just throwing out whatever occurs to me to use or not. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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AUSSIEedfamily
Dear ninhursag,

Not sure where you are from the University of North Carolina if you are not far they have a partners program

""UNITE- UNiting couples In the Treatment of Eating disorders""

https://www.med.unc.edu/psych/eatingdisorders/our-research/anorexia-studies/ucan

The Throwing Star Fish Across The Sea is a great book for anyone to get to understand EDs & would be great for your parents-inlaw. Written by two mums Laura Collins & Charlotte Bevan. Even after heaps of book's I have read it was one that really gave me new insite.
ED Dad
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Cherryusa
ninhursag,

UNC is a leader in ED research worldwide. They recieve some very treatment resistant adults and work with partners and family together. Any ED provider you have locally should be happy to work with them and at least discuss with you , wife and treatment team what they offer to help . They support and educate family. They also provide inpatient and PHP treatment if medically unstable , for purging cessation or nutritional support for initial weight restoration. Years ago they informed me they we having success with adults who gained weight to a higher BMI than previously though neccessary for recovery. We now know there is a correlation.
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ninhursag
Torie wrote:


So yes, that does create a need for a drastic power shift in the area of anything food-related. 

It sounds like she also has anxiety issues. (As sufferers are prone to, especially when AN is active). You're probably already doing this, but have you made a list of non-food related, non-anxiety producing contributions she could make? Maybe laundry, cleaning, child-care? Has she ever had a low-stress job or could she think about finding /creating one? 

-Torie


You have her re:irrationality and anxiety. This is NOT a slow woman, she is ivy educated and held a number of very high stress jobs until ED took over and made her unable to cope. She is trying out the SAHM mom gig thinking that might be lower anxiety while contributing, but it is going really poorly after only a few weeks-- hence how I am here! It's really rough waking up in your mid-30's realizing how many markers of classic success slipped through your fingers while you were sick. Idk if the parents on here can get their kids to hear that, it's hard to be able to process that as a teenager, but AN will DESTROY your mind, not just your body. Every remission I know things are going well when she is able to read books again.

Thank you for this actually-- we had a session with our couple's T (she's great for helping us break down dynamics issues, but learning about EDs as she goes just like me, which might not be a bad thing since she doesn't have a lot of the same preconceptions-- she listens and she is amazing at translating my perspective to wife, even if it's just "ninhursag isn't concerned because she's an anxious person who worries too much. you can see why x behavior might frighten her?") and we talked a lot about power and distortions and the need to be really honest with each other. Wife thinks/feels like her food is her only source of control in life right now because she doesn't have a job/income. It's hard to hear that, actually, she doesn't have a job/income because of AN and she would and could if she weren't spending all her energy on food.

We're going to try eating the damned early breakfast and she is letting me pre-prep meals and snacks and pack them into tupperware instead of insisting she can do it herself and then being too anxious to. 

The smoothie drink idea sounded too much like a punishment so we're tabling it for now-- there is a lot of trauma history, a lot of related to prior residential/inpatient stays-- but we agreed to hold the idea in reserve. 

I think the Center for Balanced Living idea is one we're going to go with, pending some more info from them. I spoke with someone there and it sounds like a fit to all concerned. My wife very much wants to get off the rollercoaster-- one thing with not being a teenager is it a lot easier to see how much the ride is costing. 
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ninhursag
Cherryusa wrote:
Years ago they informed me they we having success with adults who gained weight to a higher BMI than previously though neccessary for recovery. We now know there is a correlation.


Hi cherryusa and Aussiedfamily,

We are not close to NC and their website looks like they are looking for a fairly long time commitment to participate in their research study. Still, thank you for the reference, perhaps they have some ideas or can give local recommendations. Purging cessation has been a serious problem. It is really, really, really hard to do with a 20+ year purging habit. 30 mins -1 hr bathroom monitoring is pretty much a joke for my wife (and yes, all the digestive system problems that implies ARE problems). 

I think your point about higher BMI is really interesting. When my wife and I met, she had gotten up to a BMI of 23, now she is hoovering around 20. Her mental state was far from perfect but she did seem a lot more resilient to stress at 23. Heh, if you read a headline about a woman being axed to death Lizzie Borden style by her wife, you will know I brought this up. Hell, I think *I* was a lot more resilient to stress at 23. Her team has no forced the weight issue and so any conversation about this will jump right to "I AM NOT ON A WEIGHT GAIN PLAN"


 
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Torie
ninhursag wrote:
Wife thinks/feels like her food is her only source of control in life right now because she doesn't have a job/income.


Oh dang. I think you know this, but I'm going to spell it out just in case: YOUR WIFE IS NOT IN CONTROL OF FOOD. (Sorry for yelling.) Alcoholics are not in control of drinking; agorophobics are not in control of going outside; and your wife is not in control where nutrition is concerned. She "very much wants to get off the roller coaster," but she. just. can't. because the roller coaster controls her and not the other way around. I realize she probably won't be able to understand this, but it's important that you and the t keep it in mind.

ninhursag wrote:
We're going to try eating the damned early breakfast and she is letting me pre-prep meals and snacks and pack them into tupperware instead of insisting she can do it herself and then being too anxious to.
 

Yay! That sounds like a step in the right direction.

ninhursag wrote:
The smoothie drink idea sounded too much like a punishment ....


If she had cancer, would chemo be punishment? Food is medicine, not punishment.

ninhursag wrote:
I think the Center for Balanced Living idea is one we're going to go with, pending some more info from them. I spoke with someone there and it sounds like a fit to all concerned. My wife very much wants to get off the rollercoaster-- one thing with not being a teenager is it a lot easier to see how much the ride is costing. 


That sounds really promising. Please continue to keep us posted.

Thinking of you ...

-Torie


"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Hey, if a early morning milkshake doesn't do it how about hot chocolate made with melted choc bar and half and half. Or a milky (half and half) coffee (espresso shot).

Here we have a liquid meal supplement called Nutridrink that can also be used to make hot choc, milky coffee, porridge, rice pudding, custard, etc. So it tastes more or less like those things but it's got the nutrition of a whole meal. How cool is that! I just lovingly give my kid one of the above and don't lie but don't tell him what's in it either! Where there's a will there's a way pops into my mind often. [tongue]

Hope the Centre for Balanced Living option works out for you guys.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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.
  • We cannot control the wind but we can direct the sail.
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AUSSIEedfamily
Dear ninhursag,

BMI as a tool for measuring those with an eating disorder has just so many missing parts to its mathematical  equation formula. Its a 200 year old formula that only uses height & weight & nothing else at all. The Human body is a complex organism & needs a formula with many more factors than just two physical measurements to calculate its state of physical & mental health.

There are many here who have discovered that BMI does not fit when making a decision on the state of health of someone experiencing an ED. There are now many studies that identify the flaws of BMI in measuring anyone. Many eminent clinicians now use  the whole of body state not just weight.

ED Dad
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jdATX
Hey ninhursag,

Sorryit has taken me a while to respond. We'very had family visiting from out of town the past few days & I haven't had much chance to get online.

I'm so glad you & your wife are seriously considering the program at the Center for Balanced Living! It's obviously not a cure-all but my wife & I definitely returned home from OH far better equipped to fight the eating disorde as a team.

Yes, they help the patient & his or her support person(s) write a contract. This has been very helpful to my wife & I as we continue the recovery process at home. Having everything written out has significantly lessened the amount of disagreements we have over eating,exercise, etc. Prior to having the contract, my wife would attempt to "negotiate" eating smaller amounts, argue with me over going to the doctor,etc. These things rarely happens anymore &, though her being better nourished certainly gets some of the credit for that,I really think having a contract has played a big role, as well (& the timing of this change certainly bears that out).

I think the fact that the contract was a collaborative effort has been crucial in motivating my wife to honor it. Had the program staff just handed her a contract & said she needed to it follow when we got home, she almost certainly would have been first insulted & resentful("They gave me a list of rules to follow?! I'm not a child!"), then dismissive of the whole thing ("It must just be standard procedure to give everyone a contract at the end of the program so they can check off some box about aftercare planning. There's no way I'm ever going to look at it again once we get home so I might as well put it in the first recycling bin I see."). But because she had such an integral part in creating the contract & it was written specifically with her/our unique needs & goals in mind, instead of feeling like it infantilizes her, the contract has actually given her a greater sense of ownership over her recovery & trust in the recovery process.


I'm exhausted so I hope this was at least somewhat coherent!






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edbites
If you have any questions about the CBL program, please drop me a line. I'm happy to answer any questions you might have.

Also, I thought I'd share two pieces that I wrote that might be useful to yourself and your wife:

https://aeon.co/essays/we-should-listen-to-the-defiant-not-diagnose-and-medicate-them (the center of the piece is somewhat off topic, but the beginning and the end might be useful)

http://edbites.com/2012/03/the-myth-of-the-non-compliant-patient/
Carrie Arnold Blogger and author at http://www.edbites.com
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ninhursag
Hi, Just a follow up-- with a huge thank you for the advice from all. We did do the CBL program and are about two months post now, crazy! Things have not been perfect by any means, going on 29 years of an ED is a hell of a thing, but it was incredibly helpful in a lot of ways.  It was the first time anyone ever concretely broke down how she could be supported and how I could support with boundaries as respected as they could be (within the limits of safety, with the understanding that food is medicine and behaviors that threatened safety could not continue). We left with a contract for safety to target purging and a meal plan. As a follow up item to keep accountability going, she signed a release with her dietitian to notify me if her bloods or weight range was out and if and how much her meal plan and movement plan were being adjusted.  

Behaviors are way down, thoughts not so much, and I don't know that we have a timeline and we have to accept that things like hunger cues may never fully normalize for her like they would for a teenager so it may be meal plan for life. 

My struggle with how to recruit more help if things go sideways is still the biggest problem we have. They haven't gone sideways YET -- and we have a plan about involving my wife's family that we developed at CBL, but there are a lot of snags on all sides. There is a large sense of "You, I chose, so you can tell me I have to keep doing this, but not them". It is very sad, because based on how things have gone for us, I honestly believe that she would have done really well with Maudsley/FBT when the ED first developed. 

Anyway, thank you! I'm still lurking around for ideas, etc.

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deenl
How lovely to hear from you and that you have made some progress.

Wishing you all the best,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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.
  • We cannot control the wind but we can direct the sail.
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Foodsupport_AUS
Thanks for the update. It is a long journey but you have taken the first steps. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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sk8r31
Really great to hear the positive steps forward!  Congrats to you & wife for going to CBL, & working so hard together to move forward towards recovery.

Always great to have a Plan B handy, and know who you can enlist for support if needed.  I agree with toothfairy that at this point anyway, try to brainstorm who else might be able to be brought 'on board' for support, other than wife's family.  Hopefully, as time goes on, and brain healing continues, there may be opportunity to reach out to your wife's parents and perhaps other family members.

Again, so great to hear how well things are going at present. Sending warmest thoughts to you & wife for continued success.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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