Thoughts About the Latest Family Week

Having just returned from another Family Week at a new (in terms of my loved one’s experience) residential eating disorder treatment facility, I’m very tired out and also remain hopeful.  I’ve participated at least four times in these educational/therapeutic sessions and have valued each one in a different way. 

I’ll mention a couple of aspects of what I learned and in addition first say a few words about readiness, a topic that is being lectured on as I write this this morning by Dr. Ovidio Bermudez at a meeting of the local chapter of the IAEDP.  His presentation is looking at “various aspects of readiness for change in the treatment of eating disorders….”  At the conclusion, the details mention that “Participants will:  1) be able to discuss the effects of malnutrition on neurological function as it relates to willingness and ability to change, 2) recognize different aspects of ambivalence as it relates to readiness for change in the treatment of eating disorders, and 3) be exposed to practical tips to be used in the clinical setting as they assess and work with readiness for change in patients with eating disorders.”

I’ve included this information because readiness, I’ve learned, is a huge factor in whether or not a treatment is going to take.   I agree that each time one is admitted and stays in a residential facility or who attends an IOP (intensive outpatient program) or who is participating in therapy will learn tools.  The question is how to nudge a person towards a state of readiness in which she or he makes a commitment to use these tools to develop new behaviors and stick with them.  Readiness is the key, I think.  The expression strike while the iron is hot is relevant.  When your loved one says “I’ve had enough” or something similar, don’t delay.   Dr. Bermudez is discussing this today and I hope he will be invited to speak at future functions to continue to present the latest research on the concept of  readiness.  Sheila M. Reindl in her book Sensing the Self devotes important space to this concept.

Looking at my notes, I’d say that for me the most valuable aspects of this recent Family Week exercise were first the message about the importance of the work of the loved one and the family members/friends that I wrote about in a previous post and second, the focus on discharge planning and getting ready for one’s loved one to come home.  There were several sheets handed out with helpful tips integrated into at least three  Question and Answer sessions with a therapist, the lead nutritionist, and a staff member who have been associated with this facility for several years.  I am hoping that the facility will publish these tips on its website and I’ll come back here and post links if this is being done/has been done.  

Two examples are first, to dispose of (in agreement with your loved one based on what is termed a “clothing contract”) any articles of clothing that are too small (so the person isn’t tempted to lose weight to get back into those clothes) or too large (so the person doesn’t have clothing available to hide in).  As so many of us have learned, our loved one's body image can be so distorted that s/he has no idea of his/her actual size anymore.   Included would be clothing that conveys the message that s/he isn't worth much.  So many are filled with shame and think of themselves as worthless.  Again, it’s important to do this with their permission or approval rather than just toss things that they have specifically chosen and purchased themselves.

This inner voice of shame and worthlessness is an aspect of what is called the negative mind; a concept that is integral to the treatment here and that I have experienced personally and fully agree with the existence of.  Peggy Claude-Pierre writes about this concept in her excellent book, The Secret Language of Eating Disorders (Vintage Books, 1997; available in paperback).

A second tip is to throw out ALL fashion magazines or any magazines that in any way focus on body image/appearance.  We were gifted at this latest facility with an outstanding lecture – truly outstanding – by a woman who has been in recovery for twenty years whose doctoral dissertation and continuing research is focused on body image and how the media manipulates what you see – in magazines, advertisements, and even movies!!!!  Julia Roberts, for example, in the movie Pretty Woman was represented by five different women.  Several industry celebrities often are represented on the covers of magazines by only their face (also brushed) and by the body or body parts of others.  Truly astonishing.  How in the world can anyone expect to have their own body look anything like what’s represented, when what’s represented isn’t real.  I’ve seen bits and pieces (sorry about the pun) about this before but never in a comprehensive statistical presentation illustrated with very familiar names. 

So, bottom line for me this time is that I learned in interaction with my loved one more than I ever have about what’s behind my loved one’s eating disordered behavior.  I saw that the involvement of a truly knowledgeable lead therapist and an outstanding staff have made this a safe place to explore in depth many things. This process takes time.  (Back to my argument that insurance companies need to fund at least ninety days of residential treatment; probably more.)

I continue to believe, as is presented at this place, that eating disorders are coping mechanisms that evolve into terrible addictions/destructive habits.  I believe this particular coping mechanism tendency is present genetically in those who develop eating disorders and this predisposition leads to the disruption of the thought processes of our loved ones when triggered.  The “negative mind” is fed and becomes powerful; the actual or rationale mind of the person is still there but needs the support, encouragement, love and treatment process to re-emerge, develop new behaviors and get on the path to full recovery.

An important closing note for those who believe that one can snap out of it or that like any addiction/habit, one can quit easily, it is very important to remember that one needs to eat to live so dealing with this coping mechanism is a lot more difficult than say stopping smoking.

Further Reflections on Events Here and Care for Those with Brain Disorders/Psychiatric Illness

I'll start with noting that this morning there is a very thoughtful discussion on NPR on the Diane Rehm Show about psychiatric problems in young adults.  This can be accessed on line and listened to.  The conversation has ranged the gamut from symptoms, to the legal system, to insurance, to medications (and their cost as well as the availability of the original medication rather than a generic that may not work the same way), to treatment, to housing/care.

Often mentioned is the National Alliance on Mental Illness (NAMI) the website of which is extremely helpful to families who must start navigating the confusing maze that often brings loved ones right back to the start, to need to begin all over again figuring out what to do for their family member.   In fact, the NAMI website today provides a thoughtful statement on the situation here in Tucson.

The reason I feel this is relevant to a discussion about eating disorders is that eating disorders are brain disorders and in addition often there is an underlying psychiatric illness that precipitates a person to turn to coping mechanisms to deal with what they are thinking and feeling.

This is relevant because as those of us who have family members with eating disorders or other psychiatric disorders have discovered, it can be practically impossible still in many areas to get medical/psychiatric assistance for our loved ones, especially adults.  Fortunately, increasingly health insurance companies are recognizing that early treatment and follow up can be significantly less costly to them than repeated hospitalizations that only place a band-aid on the symptoms - meaning stabilization of the ED patient including their electrolytes before release again.

Further, in response to those who ask why more was not done (very well covered in the discussion this morning on the Diane Rehm show), I've provided in earlier posts some of the paths a loved one/parent can take to obtain treatment for their adult child but the bottom line truly is that your child, once an adult, has the legal right to refuse treatment, to be evaluated for treatment (unless s/he is petitioned legally and the petition is granted and acted upon), and even to take medications because many people with mental illnesses can experience what is called anosognosia which is a severe lack of insight, the belief is fixed in spite of overwhelming evidence provided to them, and illogical attempts to explain away the evidence (from p. 33 of Dr. Xavier Amador's terrific book, in paperback, titled I Am Not Sick I Don't Need Help (revised edition) published by Vida Press, New York).  Further, an adult can refuse to permit any member of the treatment team to reveal what is going on unless the person signs releases for specifically named people to know what is going on.

Much of this applies to the current situation because health records are sealed from place to place and incident to incident unless a law has been broken and/or if underage the record can be cleared if a diversion program is entered and completed.  I can personally attest to this lack of sharing records because only through careful record keeping, making copies of records released to me and then provided to new caregivers of others involved in additional situations, have I been able to serve as an advocate who provides critical information for ongoing care.

In other words, do not assume that the current caregiver (including hospital staffs) are at all aware of previous hospitalizations even at that location and the reasons for them,  medications taken, and recorded behavior of the individual.  Do not assume this provision of information even if you have petitioned an individual, as you can here, under what is known in this State as Title 36.  The past can be a blank slate unless this information is brought forward by means available including signed releases.

Further, do not assume that your loved one will be placed in a residential facility or hospital through Title 36 procedures  just because they are deemed to be ill.  Often, if the person is reasonably competent (as many of our loved ones can be even though desperately ill), the person and his/her attorney can persuade the judge and medical personnel that they can deal on the outside and are released, often to the parents who may be in no way capable of providing the care needed.

Here the client is usually still assigned to a mental health provider that is required to follow the person's progress and provide services.  However, with severe funding cut backs, it may take months to get appropriate care unless health insurance is available and even then getting in to see the appropriate person can be difficult.

Laws do vary from state to state.  As I noted in the post linked especially about care for an adult and further about what can one do to set up a team if treatment is denied or refused, other steps can be taken but I firmly believe laws need to be amended somehow to permit the release of records in case an advocate who has followed the person's life is not available.

Thoughts about the event in Tucson, Arizona

Tucson is being described as a city of one million, yet at times like these Tucson does indeed more resemble a small town where interlocking circles of friends, acquaintances, family members and colleagues bring us all together to support and pray for those we know who have died, who are fighting for their lives, or who have suffered injuries, and very importantly for their loved ones.

Our family is among those that has been affected in several ways by what happened this past Saturday.  Our wonderful Congresswoman Gabrielle Giffords who was shot doing what she believed in attended high school with two of my children.  The son of very special friends has been killed and another of our children attended the very same high school, actually, with him.  We have known him since he was a baby.  His service to people in our district has made such an incredible difference to so many and to our Congresswoman.  A member of our family served in a jury overseen by Judge Roll and came away with nothing but praise for how this trial was conducted by the Judge.

We pray for the recovery of Congresswoman Giffords and the others who were victims of this terrible tragedy.

To Name It Is To Tame It

Today’s Wall Street Journal (Tuesday, January 4, 2011) offers an article titled “Conquering Fear” written by Melinda Beck that can be summarized in a phrase:  to name it is to tame it  combined with the word mindfulness.

Over the past more than ten years, I’ve become increasingly acquainted with these two approaches through therapy, participation in the Something Fishy website, through readings such as books listed here on my blog, and in my weekly meetings.  When I started on this most recent journey to advocate for my loved one in the fight with the eating disorder beast, I truly was overwhelmed by the fear of loss and became so swallowed up by this fear that ironically I suffered the loss of a lot of precious time.  It is hard not to be overwhelmed when one’s loved one is on a sure path to death – many times – but I am learning that staying cool, calm and collected yields far greater benefits than obsessive worry.  Many different conversations and readings brought me to this place of greater calm and I know I will spend the rest of my life working towards it – a precious saying is progress, not perfection.

One of the mothers on the website introduced me to the phrase to name it is to tame it a couple of years ago.  How often do we ruminate incessantly over the what if’s and if only’s rather than to identify the underlying fear, observe it, and then step back and consider how to respond.  My daughter introduced me to mindfulness very simply by recommending the writings of the Vietnamese Buddhist monk, Thich Nhat Hanh, and more specifically two of his reliable volumes of commentaries, meditations, and stories that I keep close to me at my desk:  Present Moment Wonderful Moment (Parallax Press, Berkeley, CA, 2006) and Peace is Every Step (Bantam Books, NY, 1991).

By just opening one of these books and reading what is on the page brings wisdom and calm.  Just now, I randomly opened Peace is Every Step and came upon the sentence found in the short essay titled “The Roots of Anger” (pp. 64-65) “….If we genuinely try to understand the suffering of another person, we are more likely to act in a way that will help him overcome his suffering and confusion, and that will help all of us.”

Returning to the WSJ article, and pulling out a few quotes:

In reference to the third approach to cognitive behavioral therapy:  “….simply observing your critical thoughts without judging them is a more effective way to tame them than pressuring yourself to change or denying their validity.”

In reference to mindfulness:  “….paying attention to the present moment.  One of its key tenets is that urging people to stop thinking negative thoughts only tightens their grip – “like struggling with quicksand, “ Dr. Steven Hayes [a professor of psychology at University of Nevada-Reno] says. But simply observing them like passing clouds can diffuse their emotional power, proponents say, and open up more options.”

More on mindfulness by Zindel V. Segal, professor of psychiatry at the University of Toronto who devised Mindfulness-Based Cognitive Therapy to assist depressed patients:  “Part of what mindfulness does is get you to recognize that these critical thoughts are really stories you have created about yourself.  They are not necessarily true, but they can have self-fulfilling consequences.”

Many of those with eating disorders are overwhelmed by the internal critical voice or what is referred to as the Negative Mind by Peggy Claude-Pierre in her book The Secret Language of Eating Disorders (that I'm reading now and will talk about in a future post) and constantly beat themselves up in response to the messages they repeatedly hear about themselves.  By using these techniques they can learn to escape from these patterns of reaction and instead step back, think, and determine effective ways to respond.  This takes practice, but it does work.

A pioneer in all of this, I believe, is Marsha Linehan whose work has been so valuable in the treatment of those with Borderline Personality Disorder.  Dialectical Behavioral Therapy incorporates much of what is written here.

My favorite calming response is breathing slowly and deeply while concentrating on the feeling of stroking the side of my index finger with my thumb.  It has become a reflex action now and brings me to the present moment.  A calming place to be; a centering place to be.