What's a carer/caregiver?

To answer this question, I'll start by saying that Dr. Janet Treasure is a treasure.  When I saw her name on the NEDA 2010 conference program and on the professional day program the Monday following the weekend, I knew that despite any other hesitations I might have felt, I needed to go.  I mean, after all, where ordinarily could I travel to find Dr. Walter Kaye, Dr. Janet Treasure, and Dr. Kate Tchanturia all in the same place let alone familiar names like Lynn Grefe, Lara Gregorio, Aimee Liu, Anita Johnson, Carrie Arnold, Doug Bunnell, Harriet Brown, Johanna Kandel, Margo Maine, Susan Maccia as well as Fishy and Facebook friends especially "Marylou" who continues to stay in touch and who offers nuggets of wisdom?

On very, very dark days it was "Marylou" who took time out of her busy life to offer me incredibly supportive emails.  I found shelter and support thanks to her to encourage me to stay in the game.

Dr. Treasure defines a carer as "...any individual in a care-giving relationship with someone with an eating disorder, both professional and non-professional."

How wonderful!  Already I as a mom am considered a carer in this context.  What a change from the concept that I am a problem in this situation, present as recent as a mere five years ago.  Rather than dwelling on that painful time, I celebrate now the fact that there is a solid bit of evidence/research pointing to the importance of the involvement of family members and I celebrate the folks who espouse the Maudsley Method who are led by Dr. Treasure who with Grainne Smith and Anna Crane has published a wonderful parent's manual titled Skills-based Learning for Caring for a Loved One with an Eating Disorder.   The authors present as fact that "...as a carer you CAN have a role preventing the illness retaining its hold over an individual's life."  Their book offers the tools to do this. 

Dr. Treasure spoke during both the conference as well as the professional day.  Her presentation on Sunday was mostly geared towards carers while her presentation on Monday was more for therapists.  In my intrepid way, I expressed on Monday some frustration that there was still a gap between the carer and the therapist that needed to be bridged to form a team on behalf of the one with the illness.  Too many therapists still want to hold a parent or parents at bay and too many parents do not understand the message that Dr. Treasure is conveying, which is that parents are part of the solution and need to learn how to best literally behave in that role.

In either case, it is important to note that the authors provide material to cope, to effect positive change through improved communication skills, to build flexibility and to develop the ability to "carry on" under what sometimes feel like impossible situations, and to learn how to live with the illness and to manage the behavior -- not only of the person with an ED but especially their own.  Reference was made during the professional day to another manual Off the C.U.F.F. by Nancy Zucker, Ph.D.  Dr. Zucker's manual lists similar skills to be taught, including "effective parenting styles, behavior management, self-parenting, healthy eating, emotional regulation, communication, and healthy vs unhealthy perfectionism."

Some parents, when presented with this information, will jump to the conclusion that someone is saying that the eating disorder is their fault; that they are to blame.  Not at all.  How can one even know without spending time with the family in the first place?  And, truly, in this situation of a medical emergency (there's that phrase again), is that truly an issue?  

An eating disorder, when in full bloom, isn't just about the person with the illness, it also affects the entire household because a person with an eating disorder, as Dr. Treasure noted on Monday, cannot regulate their emotions let alone interpret them.  So anyone's emotionality in the household is harmful.  The skills presented in these two manuals help the parent or parents remain cool, calm and collected.

And, what does this mean?  It means that the person with the ED will observe a carer behave in a way that seems solid, loving and kind.  The carer can learn to project the image of one who will keep the person safe and secure.  Since children mirror their parents' behavior, they are offered an opportunity to learn how to effectively cope.  Partners benefit from this by working together; by feeling like they are a team, their daughter's or son's ally.  Other children in the household will build trust that not only their sibling is in a safe place but they are, too.  By taking this a step further and involving the entire family in actual therapy to practice these skills, among them to learn how to elicit rather than force change, the family becomes a haven and not a scary place. 

So, what's the focus other than this?  Nutrition.  Why other than the obvious signs of one's son or daughter rapidly fading away to skin and bones or eating everything in the house only to clog the toilets and run up the food bill (only the tip of the iceberg, these are examples) is this so important and such an emergency?  Because the brain itself needs 500 calories a day just to function effectively.

Think about it.  As you're reading this, your brain is using energy to move your eyes, absorb this material, keep your body aligned, regulate your hormones, and keep your entire system in balance.  If you restrict your eating or vomit away this nutrition (along with incredibly important things like electrolytes), what happens?

Your brain cannot cope well and therefore neither can you.  And, neither can your son or daughter.

Not only that, but most people are diagnosed with these illnesses in the prime developmental period of their lives -- their teens and twenties when the brain is still growing and developing new pathways and learning behaviors that will help the individual succeed in the world as we know it.  If the brain doesn't get that nutrition it's conceivable despite blessed neuroplasticity that the person will suffer irreparable harm.

This is why these diseases are medical emergencies and why treatment must begin as soon as possible and why the work of people like Dr. Treasure and family member authors like Laura Collins and Harriet Brown are spreading the word.  Why Drs. James Lock and Daniel Le Grange wrote their book, Help Your Teenager Beat An Eating Disorder.  That's why the first two chapters of their book are titled "Act Now" and "Get Together."  If the family can become a unified ally FOR the person with an eating disorder, much can be accomplished.

The role of carer, obviously, is very important.  Even if the family member is an adult.  The role of advocate becomes critical and at that stage the carer must learn how to provide room for the person to gain automony while still advocating for the care that they need.  More about this another time......

First steps if you suspect your loved one has an eating disorder

Dear Parent, 

[Although this letter was originally posted in 2010 here on my blog, I  attempt to keep it up to date with the latest links and publications. 3/24/19] 

First, and I cannot emphasize this enough, an eating disorder is a medical emergency that needs the immediate attention of a doctor knowledgeable in eating disorders.  If one is not available, I recommend you use the resources noted in the following paragraphs.  

Note that the blood test for Vitamin D is often not included.  I recommend that you ask the doctor to request a 25-hydroxy vitamin D level.  Anorexia and bulimia can both lead to osteopoenia and/or osteoporosis if one's D levels are low.

The Academy of Eating Disorders published a booklet primarily for doctors but extremely useful for parents that provides a comprehensive list, as well. The booklet is published in several languages now including Chinese, Portuguese and Turkish added to the English, Spanish and French versions.   Getting this booklet to doctors and hospitals is critically important.  I've taken copies to emergency rooms of hospitals here where I live and have distributed it to my family member's team as well as to her medical insurance company.  This action does not guarantee that the booklet is read, of course, but it's a step.  The booklet is available to download at The Academy for Eating Disorders .  Click on the link For Patient-Carers for the booklet and much more information.

Once a diagnosis has been made, the next step is to get your daughter/son into treatment as soon as possible.

If you can, again, find a specialist.  The law firm of Kantor and Kantor has just (March 21, 2019) published a paper titled "Is Your Eating Disorder Specialist" really a specialist?"  This article was written by Alli Spotts-De Lazzer, LMFT, LPCC, and CEDS-S and Lauren Muhlheim, PsyD, PAED, CEDS-S.

An excellent resource is the website of the National Eating Disorders Association . The site  contains information ranging from questions to ask when interviewing for a psychiatrist or therapist or treatment center to how to work with your insurance company to get as comprehensive coverage as possible for the route best suited to your family and your family member. There's a tool-kit for parents (as well as for coaches and educators) that can be downloaded directly to your printer. Many of us have printed it, three-hole punched it, and put it in a notebook. 

Another that has been a lifesaver is the organization called F.E.A.S.T. begun by Laura Collins, the author of Eating with Your Anorexic, one of the first books to focus on the concept of "food is medicine" and to discuss their family's decision to re-nourish their daughter at home.  This approach has incorporated what is called the Maudsley Method or Family Based Therapy (FBT).  Training is quite specific and if you choose to re-nourish your family member at home, I encourage you to seek out a therapist who is certified.  F.E.A.S.T. has published several important booklets and information sheets available to download or order from the site.  You'll also find a forum at this link populated by many parents offering coaching -- support and experience -- (as well as delicious and effective recipes).   There is also a private Facebook page for family members/carers.

If, following diagnosis, your daughter/son has met with a psychiatrist and/or a medical doctor who is trained to recognize and treat eating disorders and has been prescribed medications because of her/his eating disorder (referred to here as ED) or her/his other disorders, the National Alliance on Mental Illness offers a great website with up to date information about medications as well as brain disorders.  NAMI offers support groups as well as classes for families to help them understand what's going on re depression, OCD, bipolar, and so forth. You'll find NAMI in the phone book of if not, at the main NAMI website.

Often communication skills need to be refreshed or learned because the disease (many of us call it ED) gets in the way.  Teenagers are going through a lot anyway let alone those with disorders that make life more difficult for them. A psychologist -- Dr. Xavier Amador -- developed a technique that he called LEAP (an acronym) to reach out to his brother, who was mentally ill.   You can learn more by clicking here.

LEAP is the acronym for Listen (Reflective Listening), Empathize, Agree (find common ground you can agree on), and Partnering (towards the same goal). 

This method proved very successful and is now taught in seminars around the country. The theory was expanded in an excellent book aptly titled I am Not Sick, I Don't Need Help.   Dr. Amador defines the term "anosognosia" .  The term is usually associated with those with schizophrenia and bipolar disorder but doctors and families are coming to understand that those with eating disorders often do not understand how sick they are because their brains are so compromised by starvation and/or electrolyte imbalances.

By studying and learning the communication skill LEAP as well as the skills noted in the following three resources, a parent has a better chance of remaining cool, calm, and collected in the face of a storm that can be overwhelming and that can heighten the level of stress for the entire family.

Additional resources include the following books:

Sick Enough - A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani MD, CEDS, FAED.  This is a must for you and your family member's doctor.  My family member and her doctor read it cover to cover and her PCP told me this past week that the book is being passed around the medical center.

If your daughter/son is still a teen, take a look at an excellent book, now in its second edition, by James Lock, MD, PhD and Daniel Le Grange, PhD titled Help Your Teenager Beat an Eating Disorder. 

My adult family member, to plan her meals, relies on How to Nourish Your Child Through an Eating Disorder - A Simple, Plate-by-Plate Approach to Rebuilding a Healthy Relationship with Food by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD.

Skills Based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method written by Janet Treasure, Grainne Smith and Anna Crane.  

If your older daughter/son is inclined to read another's experience, I highly recommend Jenni Schaefer's (in collaboration with Thom Rutledge)  Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too.

Carrie Arnold (noted in the above paragraph) is a freelance science writer and blogged at EDBites.com.  She is an advisor to the advocacy organization FEAST (Families Empowered And Supporting the Treatment of Eating Disorders) and regularly appears at national and international eating disorder conferences.  She has recently (2013) published an outstanding book titled Decoding Anorexia that [from the book description] "...is the first and only book to explain anorexia nervoxa from a biological point of view.  Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder are paired with first person descriptions and personal narratives of what biological differences mean to sufferers." I especially highlight this book here because its provides to clinicians, parents/family members, and adults with eating disorders an excellent reference book again written in such an easy reading style.

Rehabilitate, Rewire, Recover! - Anorexia Recovery for the Determined Adult by Tabitha Farrar.  Tabitha Farrar's extensive blogging, her podcasts, and her work is extraordinary.  As noted, this book is directed towards adults with anorexia.

A book for those doubtful of the ability to recover, edited by Aimee Liu is titled Restoring Our Bodies, Reclaiming Our Lives.  I recommend this excellent book for parents, therapists and most importantly for those who want to recover but don't believe it's possible - and for those fighting ED -- that covers pretty much everyone mired in the disorder.

Brave Girl Eating by science writer and author Harriet Brown (who has regularly contributed to the New York Times Magazine and other media) recounts their family's journey to help their daughter get on the path to recovery and offers up-to-date information on research going on in the field.  I believe this book is a classic.   A local therapist read this book and told me she was quickly updated on how to help parents understand the behavior of their child during the throes of recovery.

There are two other excellent books that I, as a parent, wish I had seen years ago. One author is Dr. Julie O'Toole and the title is Give food a chance: A New View on Childhood Eating Disorders. An important thesis is to remember food is medicine and as many of us say, recovery must come before anything else AND it's really important to get a person re-nourished so their brain can function okay again. If their weight is too low, it's been found that meds either don't work as well or are ineffective. "  If they are binging and purging, their brain's chemicals are in disarray, as well.   The second is by Dr. James M. Greenblatt, MD titled Answers to Anorexia - A Breakthrough Nutritional Treatment that is Saving Lives (Sunrise River Press, 2010).  Both these books are available in paperback.

Note that a family may not be able to utilize Family Based Treatment and may need to decide to send their family member to a facility that offers inpatient hospital treatment and acute care and from there residential treatment (and step-down beyond that).  Each family's circumstances are different and it's very important to develop a treatment plan specific to your daughter or son.  I do not provide a list of facilities on my blog; you can find one on NEDA's.  Pay attention to those that are certified by the Joint Commission on Accreditation for Eating Disorders that has recently (2016) updated its requirements to be listed by the Commission.

Whatever course you choose or find you must follow, be aware that, when your son or daughter has returned to a healthy weight and has "sat in his/her body" for several months and has become accustomed to it, if behaviors continue to be all over the map or fraught with anxiety or other issues, it may be that those issues are what has been driving the eating disorder. [If your son or daughter was diagnosed with bulimia, be on the alert for some time for any signs that this behavior has returned.  If stress levels go up, it's not unusual for this behavior to pop up again.]   A visit to a psychiatrist is important at this point to address these issues so the person does not regress and return to the destructive coping mechanism(s) that s/he has learned works well for them.

Anxiety disorder is a big one and 65 percent of those with an eating disorder often have developed an anxiety disorder earlier in life.  Another diagnosis -- Borderline Personality Disorder -- is present in at least 25 percent of those with anorexia and binge/purge subtype and 28 percent of those with bulimia.  Again, if behaviors continue once your son or daughter is re-nourished, investigate what's going on.

It's also important to remember that recovery comes in stages and takes time - meaning at least a year to get her/his feet on the ground and more time to really get in recovery.  I've provided links here on my site in the "of note" section about stages.  As many of us say, recovery is a marathon, not a sprint.  And, remember, the tendency remains so skills to divert regression, like DBT (Dialectical Behavioral Therapy) and CBT (Cognitive Behavioral Therapy), are very important.  There are now subtypes of CBT.


Meanwhile, there are some effective guidelines (if the link no longer works, know that I will look for it again shortly) that help keep things calm and orderly for your son and/or daughter.  These were revised for people with BPD (Borderline Personality Disorder) but can be applicable, I think, to any household with someone who is anxious or has an eating disorder and is working to get back to recovery.


I've written what I hope is a brief helpful explanation of the need for proper nutrition before medications have any effect.  You can access it here.

A lot to think about and become familiar with.

Again,  this diagnosis is a medical emergency that cannot and must not be ignored.  Data presented at the NEDA conference by Dr. Russell Marx in 2010 showed that the first stop most parents make is their family doctor's office.  Often the family doctor is not up-to-date on treatment for eating disorders.  The book by Dr. Gaudiani and AED  manual mentioned above should be in every doctor's and dentist's office because dentists also can observe and identify clues that the person is fighting an eating disorder including eroded teeth.


You'll find links on this blog to helpful tips about insurance companies and information you may need to obtain the coverage your loved one must have.  And, if your loved one is an adult, I've put together posts that provide you with information to help them, too.  Click on this link that will provide you with other resources (financial too) and links, as well.  I am now working with FEAST to develop a resource for those whose illness is long-term and entrenched.  Start with the paper by Touyz and Hay listed on the right of my cover page.

You can and will find help.  Don't delay for your loved one's life depends on immediate treatment. 

NEDA Conference

While flying back home, I started a list of words that would remind me what I wanted to think about and perhaps post about the NEDA conference.   Here's the list:
stress medical emergency
cool, calm and collected parent - how - carer skills
food first
stroke recovery
cognitive remediation therapy (Tchanturia work)
oxytocin
traits and states
what is recovery
BPD - really feel, negotiation therapy, interpret rather than confront
starvation affects executive function (Treasure)
nutrition deprivation at a critical time
motivational interviewing
returning to the old normal is not the goal
pentimento
fMRI
17 years from research publication to practice (?)
neuroplasticityand hope
lack of data for true long-term evaluation studies
AED booklet on ED (for doctors, dentists, etc.)
Russell Marx's 5 critical points
60% anxiety predated AN
50% success with Maudsley means 50% need something else or another angle
5000 hours to solidly learn a new behavior - that's 208 days or approx 6 months

Perhaps the next step is to sort these in categories; for example, as a carer, as an advocate, as a person interested in the science of all of this, and as one who wants to see more longer-term studies and data collection.

Perhaps the best place to start would be as a carer and advocate since I've filled those roles for many, many years and have shared what I've learned on Something Fishy along with so many others who offer their experience, strength and hope there.

Rejoining the blog-o-sphere

Having just returned from the National Eating Disorders Association conference and still trying to get my brain around all the information I heard/learned, I've decided to revisit this blog I started three years ago.

For four years I've been posting to the Something Fishy website. The people on this site have been my lifeline to sanity as I've struggled to support a family member and at the same time not lose myself in the process. During this time the environment has gone from blaming moms for these diseases to supporting parents in their quest to help their loved ones get on the path to recovery.

I've learned a lot not only due to voluminous reading of everything I could get my hands on (and that my budget and bookshelf could stand), to the wisdom of my "fellow fishies," to the wisdom of my outstanding therapist who has taught me tools to be supportive not only of my family member but also of myself, but also to the family weeks I've experienced at various eating disorder residential treatment centers where I've worked with therapists who have given me insight into the world of one with an eating disorder.

I've learned about the value of family therapy to adjust my behavior to assist my family member by providing a supportive environment. I've become familiar with Dr. Xavier Amador's incredible book, I am Not Sick, I Don't Need Help that includes a theory of communication called LEAP.

I've read Dr. Janet Treasure's outstanding book, Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method as well as Dr. James Lock's and Daniel Le Grange's book Help Your Teenager Beat an Eating Disorder. And so much more.

I also am an avid supporter of the National Alliance on Mental Illness (NAMI) that opened my eyes to brain disorders through its Family to Family course. A recent report indicated that more than 1 in 5 teenagers has a brain disorder of some sort. Other researchers have concluded that many of those with eating disorders exhibited an anxiety disorder like OCD or depression prior to developing the ED.

I thought I already had figured out a lot about eating disorders since I began my own path of recovery from an eating disorder more than thirty-five years ago when I was approaching age 30. Not so. Each of us is an individual with our own "stew" as I like to call it of genetics, biology, psychological behaviors, and socio-cultural factors. I think there is a common thread to recovery but a lot of variation, too. I plan to share some of what I think led to my recovery that has remained solid (thank God) all of these years.

So...... a lot to think about and write about, I suppose, starting with the NEDA conference. So much information offered by so many generous people who provided their time this weekend to share their knowledge on the podium as well as privately......