Tuesday, June 14, 2011

I need your advice and wisdom

As you no doubt know if you're reading this, I've let this blog languish for a long time now. Too long. I won't go into the reasons for that lapse here, but I do beg your forgiveness. And so it's fitting that for my comeback post, I'm asking you for advice.

The advice isn't for me but rather is for a woman I'll call Mary, who's in her mid-30s and has been ill with anorexia since she was a teenager. She's been through in-patient, residential, intensive outpatient, outpatient treatment--you name it, she's been through it. And she is still sick.

Mary is smart and motivated. She understands what she has to do to recover: she has to eat. As for everyone with anorexia, eating is terrifying for her. Those of us who have re-fed a child or teen or young adult with anorexia know how very hard it is for someone with the illness to eat, and how much they need someone to stand with them and stand up to the eating disorder. Mary wants that very badly. She doesn't want to die. She wants to recover and knows, at this point, that she can't do it eating on her own.

Mary's dilemma has made me think long and hard about the need for a different level of care. I think one of the reasons FBT (the Maudsley approach) is successful most of the time is because parents care about their children in a different way than, say, administrators or caregivers at a residential facility care about their patients. I've come to believe that that love is part of the cure, maybe because it motivates parents to hang on through the toughest moments, or maybe because it's part of what breaks through the cognitive distortions of the illness. It doesn't matter why, really.

So I wonder: What if we created something like halfway houses for refeeding people with anorexia? Not residential facilities, with their (perhaps necessary) rules and restrictions and inevitably institutional feeling. More like a small house, with 3 or 4 people living there and round-the-clock nurses who developed real relationships with their patients. Who really cared about them. Who were capable of empathy and affection and, yes, maybe even love sometimes. There wouldn't be hours of group and individual therapy, because those things really don't help people until they're more or less weight-restored, so the cost could be much lower than the one to two thousand dollars a day cost of residential care.

What I'm really talking about is a kind of foster re-feeding home. I've given a lot of thought to inviting Mary to my home and re-feeding her, but there are some logistical challenges involved that I'm not sure are solvable.

So I put it to you: Do any of you know of resources for someone like Mary? Resources I'm perhaps not aware of? And what do you think of the idea of creating refeeding homes for people with anorexia?

I'm eager to hear from you. So is Mary.

32 comments:

Jen said...

Harriet, I believe this concept needs to be actualized in every city. I've talked about it; I know others have talked about it. I think it's a great idea.

Jennifer

Anonymous said...

Day Treatment can be an effective option too!

PJ said...

I think a foster re-feeding home is a really brilliant idea. It's so hard as adults because we have to 'choose' recovery and then maintain the motivation to stick with it even when everything falls apart. If someone could come up with a workable FBT-style system that works for adults without it being demeaning or disepowering it would be revolutionary. And I think you may be on to something with this suggestion.
I had an experience earlier this year when I was away on a camp and the food was all served cafeteria-style. No questions, just here's your food, go eat it. And after a shaky start I did just eat it. Not being responsible for deciding and then buying and then preparing and then eating the food relieves such a lot of the pressure.
I have worked out a system in my own home which is working well for me at the moment which I am about to do a blog post on. But I have a husband for support and children I need to provide for as well, so I know my situation is probably different - but I will let you know when I post it in case there's anything in there which could be transferred to Mary's situation.

mary said...

I like your idea A LOT. I believe it was some years back that Laura and I had a chat about this, on a forum. I believe that as individuals we have more power to help one another than we give ourselves credit for.
And, if you believe you can help Mary beat her ED, she's willing, and your husband supports you, then maybe you can set down the boundaries and give it a try. I know others will say it's going to be too hard but you may prove them wrong. If possible you may want to see if you can gather a small team of support. This may take time so you need a real plan. In other words she can not go to your home to die. Recovery is the plan. I know this disease is curable. Wishing you the best no matter what happens.

azhe'n said...

you know from my own story how much i believe in this possibility. it is one year exactly since i was on a plane to give this sort of thing a shot. you also know that in my case the easiest times for me to eat are when i am with family and friends because i will do it 'for them'.

so my wisdom says this can work. it also says that there needs to be some thorough conversations with people about what is advisable therapeutically while still creating an atmosphere of love. it can be so damaging to the individual if what is presented as love turns out to simply be a paycheck or worse yet, manipulation of the individual in a personal way. you really are going to need some special folks to be 'workers'.

i know in my gut this can work. i just don't know of too many folks willing to take on the challenge EVEN WHEN the person has medical care and support as i do across the country.

my heart is with you and Mary. i'll put my thinking cap on, such as it is, and brainstorm a bit.

~always lovingly~

lisa said...

Harriet, I think this is exactly what is needed for adults who do not have a family to give them a more long term living support for refeeding and maintaining. Ireally very strongly believe that this what is lacking in the transition for young adults and adults during that time it takes to fully weight restore and maintain long enough to regain real cognitive ability to learn and use effective tools for long term recovery. I have been in similar situation with adult Ed friends my daughter has made during her treatment. A few very fine motivated young women with no real meal support once they leave residential treatment. They are really not ready to take full control of this task and seem to inevidantly return to Ed behaviors and repeated residential treatment.

thestarvingarthistorian said...

That's an interesting idea. I've heard good things from two friends about the Carolina House...so perhaps an even smaller version of that (I hear it's a pretty intimate setting)?

Being an adult is hard, and I barely am one at 19. But there is a huge problem with recovery after you hit your late teens. The only reason I'm skeptical even of your idea is because of my own experience. Can you not get kind of addicted to love and being taken care of? I know my family is sick of it, and I want to be a normal person. So...yeah, if I can't bring myself to give it up I feel like I'll only ever be a half person, at best only surviving because other people want me to.

Sorry, I too have done every treatment option, every medication, tons of therapists to no avail. It's made me cynical.

lisa said...

Thestarvinghistorian...I'm sorry my friend I hear how hard this is for you and I think I hear some guilty feelings too but make no mistake. This illness require a great deal of support. When a family clearly understands that the sufferer is not being willful and resistant , they can and often will with the right support, do whatever it takes.
If you had cancer, you wouldn't necessarily think that a person doesn't need to be tsken care until they are recovered. This is EXACTLY what Ed suffered need. And who better than an understanding caring person to be the one to help and that can translate into family or family-like setting...Actually, my heart breaks for those whose cannot get the support they need either because the family has not been given the proper tools and support or is absent or too ill themselves.
That is why I think this is an excellent option that just needs to be tweaked..

Harriet said...

So . . . how would we tweak it? Can we put our heads together on this? I'm going to be doing more talks this year around the country. I'd love to have a great new idea to offer people like Mary and to pose to various groups.

Sylvie said...

Oh wow, this kind of idea would be amazing in practice. I've often wished there was some kind of foster-family-based care that I could opt into. I'm 25 - one of my parents has passed away and the other was abusive and now lives in another country. I don't have an "adult" support structure here, just my (wonderful!) friends. Anyway, I've spent the past 2.5 years since I got out of IP swinging between frustration and despair at how hard it is to get well when you're 25 and don't live with family and have a full-time job. I was still an underweight BMI when I left IP - I live in a country with barely any beds (NZ) and they thought I'd made enough progress to be alright. But I was still pretty entrenched in the ED, and 2.5 years later, I've yet to break out of the underweight BMI range. I've had doctors tell me that I just have to make recovery work for myself, but sometimes that's really hard when my brain is in the grip of it. My friends are wonderful, but at the end of the day, they're not equipped to put three meals a day in front of me and sit there with me until I eat it. As I hope is obvious, one thing I think I have gained over the past couple of years is perspective on/understanding of this disorder - I'm more mentally stable than I was back then, and I think that's partly come from having to do it on my own. But at the same time, the figures don't lie, and the figures (and the physical symptoms, which can be kind of hellish) say I'm still entrenched in the illness. I'm so scared that I'm not going to ever get better - that this kind of self-management (if that's what you call eating enough to get yourself through a work day) is all I have to look forward to. And it's terrifying to know that no one will step in if I'm doing really badly (because I've been there, and no one did).

Sorry for the huge exposition, but I just wanted to show that some of us are falling down big gaps, where we're not at all in a situation for FBT, but like the idea of it. There are some blogs out there champion FBT so hard that I feel like they're saying you're pretty much doomed to failure (i.e. death) if you don't do it, and that makes me feel sick - I so hope they're wrong, much as I love the idea of FBT. Otherwise what hope is there for someone like me?

Will be keen to read more posts on this in the future, thanks for bringing it up.

JeninCanada said...

Great idea and good luck to you both.

Parenting & feeding: There's something so fundamental between parenting and feeding your kid(s), whether it's breast, bottle, veggies from glass bottles, first slice of pizza or peanut butter and honey sandwiches every day. It's almost primal the sense of satisfaction you get when you see your child eating and thriving, and nothing worse than watching the opposite. It's love in one of it's most basic forms, wanting that other person to survive, to thrive, to grow and blossom, inpart because of your efforts. I remember going to Gabe's 6 week checkup and being SO PROUD that he'd grown so well on just breastmilk. It was amazing and it was the start of finally 'getting it' as a mom, and becoming comfortable with parenting.

Kate said...

Harriet,
I think your idea of halfway houses is BRILLANT!! It sounds like it would work much better than the usual treatment facilities because the patients will get more attention and care that they need in order to recover. It's sad to hear about Mary who has been through hell and back with no real help for her ED. That is just extremely sad that she had to go through so much with little significant improvement. It does make a big difference that she knows what she needs to do to recover and that she is willing to do whatever it takes for her to recover. Sadly, I dont know of any resources for her. I truly wish I did. And it is super inspiring and kind of you to think of letting her come to your house so you can refeed her. She would be eternally grateful. Good luck to you and your efforts and also good luck to Mary. I am behind you all the way and I am totally rooting for Mary. I know she can do it, she just needs help from kind and selfless people like you.

JS said...

I think it's a wise idea. Like halfway houses for alcoholic and substance abusers, it acknowledges both the behavioral and the neurological components of the disorder. People's brains need a safe space to heal while they learn new behaviors!

mary said...

The money saved by offering this sort of alternative program would allow more people to get the help they need. I can see those who already run expensive facilities wanting to stop this...same argument parents get when a Dr. says "do not try this at home". Success at an honest price would expose the truth about residential places that bank on people staying sick. I suppose the best way to approach this is to say this is what we want! It's the best chance for most though we all know some will not want recovery and will use every trick. With alcohol they expect the addict to step up and be ready. How would you want to determine acceptance into this sort of program, Harriet? At this point I do my best to speak up to the many dieters on my FB page and "mother" them into accepting themselves as they are, even if I'm not 100% sure it's an ED. So, though I must be discreet to protect my loved one's privacy, I can never see this disease the same way as before. It would be nice to be able to do more.

lisa said...

Harriet, I think this concept would benefit from a FBT professional associated with a possible program like this. It ay help to get some insurance funding. Also maybe alng the lines of foster care type concept like a paid job for someone taught how to be an effective support.

Jen T said...

Harriet, My 13 year old daughter was diagnosed with anorexia in Jan, and our team which practices the FBT recommended your book. My husband and I both ate it up. It was so spot on as to what is happening with our daughter. She is just like Kitty, except we had to deal with our daughter purging also. I just want to thank you, thank you, thank you so much for writing that book!!!! How is Kitty doing now? Our daughter is almost to her "goal" weight and improving emotionally slowly but steadily. Sorry this doesn't relate much to your post, but I just finished your book today, found your blog, and just had to tell you how much we loved your book and appreciate it so very much!

Harriet said...

Jen, I'm so sorry you are having to go through this, and glad your daughter is making progress. Physical progress comes before emotional progress, so hang in there.

Kitty is doing well. Thanks for asking!

Erin O'Dwyer said...

Hi Harriet,
I too read your book, but I am the daughter(19) struggling with anorexia, not the mother. Unfortunately, my mother has never been in a place to support FBT or my recovery. Last year, I went to an inpatient center called Oliver-Pyatt, but when the finances ran out, my insurance never covered an outpatient team or step-down program, claiming I was perfectly healthy(oh insurances....). But I found the determination to fight the anorexia, fought the insurance company with all I had, and now am doing so much better with a complete outpatient team. I wish you and Mary all the best.... my heart goes out to her. Before inpatient and even after, I never thought I'd be in the place... that recovery was possible. So I hope you give Mary my hope... there is always hope.

I liked your idea of a half-way house and I thought I would mention a program I think is pretty much what you are describing. I don't know much about it, but before deciding to go to Oliver-Pyatt, I considered it because it is very close to my home. It's called Hope Grows Recovery and from what I can remember, it is a very small program that mostly does experiential therapy, is very affordable, and focuses on how to live in the real world in recovery(as opposed to the very isolated feeling in a treatment center.) It is listed on the something-fishy website, but for some reason, the link to its web page no longer works, but you might try giving them a call anyways. It's worth a shot... Again, from what I can remember it's very small, the house looked very calm and beautiful and the program only took women very committed to recovery. Hope that helps. All the best to both of you(and Kitty of course!)

Tomix said...

Dear Harriett,
I'm 27th recovering anorexic, and I like the idea. Our families are not always eager for the total control and support. I quess I'll never have an opportunity to use such a program (I live in Russia), but the idea seems so useful!

Harriet said...

Thank you everyone for your insightful comments.

I agree that this could work with trained caregivers and an FBT therapist maybe overseeing or in some capacity.

Erin, I'll take a look at the program you mentioned.

Let's all keep thinking. We need more options to deal with these illnesses.

benjity said...

Harriet,
I write a blog about body image and other lies that destroy women's lives. Today I am hosting a contest and giving away copies of your book "Feed Me" I loved it !!
Now I can't wait to read the next one.
http://www.benjity.wordpress.com

Harriet said...

Thanks, Benjity! Nice blog!

Anonymous said...

About a month ago I attended a conference (facilitator training using the SENG model) about creating support groups for parents of gifted children. Though the topic was gifted, my mind kept wandering toward curriculum based facilitator training for parents with ED kids (adults)—maybe using a FBT/Maudsley framework. Why do I mention this? The “foster home-like” idea for adults with ED is great, and you’d probably develop some sort of curriculum-framework for that project, in addition, why not create facilitator training for parent support groups so parents have resources before group-home fostering is necessary. Facilitators wouldn’t have to have the answers, but would offer guided curriculum so parents would be focused and supported through the strength of the group. I’ve been to a few ED support groups, and the members are very supportive, but there is little focus/framework. Just a thought….

Dawn

It's_Me,_Mary said...

Thank you all for your thoughts and support and especially thank you to Harriet, who has been a godsend. I am still looking for answers, and I am probably more confused than ever, but I am trying to hold onto a grain of hope.

It's_Me,_Mary said...

Please, please, please... if any of you know anyone who is willing to pilot test Harriet's idea of refeeding an adult who does not have family support (me), please let me know. I want to get better. I don't know any other way right now. I am ready to call Dr. Phil and parade myself on national television if it means I can get help in a treatment center, and I only have a moderate amount of faith in that working (the treatment center, that is). I want to get better. Really, really, really bad. Thank you.

azhe'n said...

Mary, i so wish i did. i know for a fact that i do better when someone just says, "This is it. I'm coming with dinner. You can have a choice or I will make it." i do so much better then.
i hear and feel and sense your fear and frustration. for now, let those near to you be and stay with you. anorexia is isolating, so it could be you don't have many. still, just point them to this blog and tell them, even in email that you need some help. you're much braver than i for putting yourself out here.
my prayers and heart will go to sending back to you the perfect resolution.
hold on sweetheart,
azhe'n

PJ said...

completely second what azhe'n said. Sometimes even eating out is easier than preparing food at home (assuming I have pre-decided what will order).
Still wracking my brain on a solution for you - but ultimately it may have to come from within - that is where the beast is hiding after all :)

Anonymous said...

This is a great idea. I hope that support to make this a reality will come your way.

Craftymom said...

I know I'd quit my job now and help someone overcome anorexia by proving meal support, if only I could also take care of my need to have a salary and health benefits. What if there was a company that offered these services (of course insurance wouldn't pay, though) and hired people like me to work one-on-one with people who needed this assistance? I'm in the sf bay area. Let me know if this is an idea that could work.....

It's_Me,_Mary said...

Craftymom,

Wow... I would love it if that were a solution! I'm still searching. Meanwhile, just trying to take it a day at a time and do my best. A girl can live like this only so long, though.

To everyone else... thanks for all of your blog support.

L nolan said...

I am a nurse , have been for 20 yrs. My 13 yr old daughter was hospitalized twice. Home care and out Pt therapy helped with the guide of your book. I could see homes like you talk about for elderly and disabled. Mabey thru social services a specialized home care nurse could be developed in associaton w/ insh companies if the treatment effeicacy and decreased cost could be shown . Even a nurse specalist to visit the home daily to help parents w/ children and teens in recovery.could definitely prevent re- hospitalization . A specialized course for Psyc nurses to deal with HBT in anorexia could be developed with you and the collaboration of medical And Psyc Dr. s. This could be a real breakthrough for Tx of this disease.

Anonymous said...

there is one is b.c. canada that models this approach...