Guest Post - Boundaries

The concept of boundaries presents many layers of comprehension.  There's the definition itself, there's my boundary and how I've come to establish that definition, there's my family members' boundaries both from my perspective as well as theirs....  I recently shared at a meeting that I grew up in an environment where, using the idea of a cellular membrane, mine were fairly permeable and my elders regarded them as permeable.  I have learned with a lot of work that I have the right to make mine less permeable and, as well, that my family members have the right to make their boundaries nonporous, if they wish!  In other words, we all need the right to autonomy and sense of self that works for us.  Our children need to develop a sense of self and we, as parents, need to provide that space as well as a healthy working model of what boundaries mean.

That said, I obtained permission to post a recent commentary from an eating disorders facilitator -- Marjie Ruth -- who regularly posts about concepts that those of us with loved ones with eating disorders need to think about.  Her latest is on boundaries.  This post is very important, especially for parents of adults but as well for parents of soon to become adults.

"This week I'd like to recommend a book to you. As you are probably
aware, there are quite literally hundreds of books written about eating
disorders and thousands about addictions with many, many more about
relationships, psychology, etc. Quite frankly, I'm not one who has read
very many of them. I find it can be quite difficult to read about the
nightmare while I'm living it on a daily basis. I tend to want to
reserve what little reading time I have for something more enjoyable
than the blow by blow description of someone else's horror story. Yes, I
like use my down time for pure escapism with light hearted comedies
being my favorite. But while in my local grocery store one day, I
happened to see a title on a book display stand near the deli counter
that caught my eye (Yes, clever marketing to reel me in while waiting to
be waited on!). I grabbed the very last copy of Setting Boundaries with
Your Adult Children (subtitle: Six Steps to Hope and Healing for
Struggling Parents) by Allison Bottke that they had, and I'm so glad I
did. This book has turned out to be a real gem. I'll provide detailed
information at the end of this email in case you're interested in trying
to secure a copy for yourself.

What Ms Bottke has done is to write a 'How To' manual based on her
personal experience with her drug addicted son. While the title refers
to "adult" children and many of the scenarios are definitely geared to
adults, most of the the concepts she puts forward regarding boundaries
are applicable and useful with minor children and, indeed, with all
relationships. The steps she outlines are especially helpful for those
of us who have a tendency to enable--and I most certainly place myself
in that group.

What follows is my very brief compilation of some excerpts from
Setting Boundaries with Your Adult Children by Allison Bottke:

  " What is the difference between Helping and Enabling?

Helping /is doing something for someone that she (or he) isn't
capable of doing herself.

Enabling/is doing for someone what she could & should be doing for
herself.

An enabler is a person who recognizes that a negative circumstance
is occurring on a regular basis and yet continues to enable the
person with the problem to persist in his detrimental behaviors.
Thus, enabling creates an atmosphere in which our adult children can
comfortably continue their unacceptable behavior.

ARE YOU AN ENABLING PARENT?
 
The following questions might help you determine the difference
between helping & enabling:

1.Have you repeatedly loaned your adult child money, which has
seldom, if ever, been repaid?

2.Have you paid for education &/or job training in more than one field?

3.Have you finished a job or project that she failed to complete
herself because it was easier than arguing with her?

4.Have you paid bills she was supposed to have paid herself?

5.Have you accepted part of the blame for her addictions or behavior?

6.Have you avoided talking about negative issues because you feared
her response?

7.Have you bailed her out of jail or paid for her legal fees?

8.Have you given her "one more chance" and than another and another?

9.Have you ever returned home at lunchtime (or called) & found her
still in bed sleeping?

10.Have you wondered how she gets money to buy cigarettes, video
games, new clothes, binge food & such but can't afford to pay her
own bills?

11.Have you ever "called in sick" for your child, lying about her
symptoms to her boss?

12.Have you threatened to throw her out but didn't?

13.Have you begun to feel that you've reached the end of your rope?

14.Have you begun to hate both your child and yourself for the state
in which you live?

15.Have you begun to worry that the financial burden is more than
you can bear?

16.Have you begun to feel that your marriage is in jeopardy because
of this situation?

17.Have you noticed growing resentment in other family members
because of your adult child?

18.Have you noticed that others are uncomfortable around you when
this issue arises?

19.Have you noticed an increase in profanity, violence, and/or other
unacceptable behavior from your adult child?

20.Have you noticed that things are missing from your home,
including money, valuables, and other personal property?


If you answered "yes" to several of these questions, chances are
that at some point in time, you have enabled your adult child to
avoid her own responsibilities & to escape the consequences of his
or her actions. Rather than helping him/her grow into a productive
and responsible adult, you have made it easier for your loved one to
become even more dependent and irresponsible.

If you answered "yes" to most or all of these questions, you have
not only been an enabler, but you have probably become a major
contributor to the problem.

It's time to stop.

If you've found this interesting or helpful, you might want to try to
obtain a copy of her book. Here's the pertinent info you will need to
find a copy either on the internet or at your local book seller: ISBN
10-0-7369-2135-4 Copyright 2008. Published by Harvest House
(www.harvesthousepublishers.com).

We'll talk more about this in our group meeting. Enabling can be a
difficult concept to come to terms with, especially when it comes to
identifying our own enabling behaviors. But we shouldn't let that
difficulty discourage us from trying to recognize and deal with the
problem. The stakes are too high. Because we easily become overwhelmed
with concern and/or fear for our loved one, it's oh-so-easy to justify
our actions on that basis. That's why it's important to go back and
reread the definitions. Still having trouble understanding? That's
OK--it is difficult and next week I'll share a bit more with you from
this book and about enabling..

Marjie Ruth

727-244-9011 (c)

PS Anyone reading this may feel free to share it with others. Please
include the entire email so that all material within is attributed to
the proper source. Feel free to contact me if you'd like to be added to
my regular mailing list. It is entirely confidential. And just let me
know if at any time you'd like to be taken off the list. It's OK, really."

Bridging the Research-Practice Gap

The title of this post was an important focus of the recent National Eating Disorders Association conference held in October 2010 in New York City.  The title of the post is also part of the title of an astonishing new addition to the literature available in the field of eating disorders.  Published by Elsevier, Inc. (Academic Press is an imprint of Elsevier) this year (2010) and edited by Margo Maine, Beth Hartman McGilley, and Douglas W. Bunnell, the book Treatment of Eating Disorders: Bridging the Research-Practice Gap should be (I wish) a required purchase for everyone in the field.

A couple of years ago I read Tipping Point:How Little Things Can Make a Big Difference by Malcolm Gladwell.  I believe we are either approaching critical mass or have reached the point where enough people are paying attention, where enough people are passing along important information to others, where enough people are printing information in major periodicals that in total reach millions of people..... I could go on.  Gladwell's thesis is that a lot of very small actions or changes can lead to major change.  He delves into the facets of his topic and notes certain conditions that he believes must exist as well as the different types of "carriers" that must be present.  It's an interesting read.

Now, we need enough people, so to speak, to reach into their pockets -- corporate or foundations or people -- to fund studies such as that by Dr. Walter Kaye who now has DNA samples from more than 4000 people with ED and their relatives as well as a lot of information about their behavior.  

[I think it may be time that I take a look at his and others' work.  I've been reluctant because most who call out for help are more interested in the "how do I help this person get well."  The question, "how did this happen" is multifaceted and it does involve genetics, especially involving the brain.  I also think that once cognition has improved for patients, that they as well as their parents need to get a grasp on how the brain works to work together with their brains and body to get well.  There's a great book about this concept, too.  I need to find it on my bookshelf.]

I'll get back to my original point in a moment but I do want to say that Dr. Kaye does need funds to support the analysis of the data his team now has.  More on that in a post of genetics.

So back to Bridging the Research-Practice Gap.   This book is current.  One of the laments often expressed during the NEDA conference was the time it takes to get from publication to use of the information by the team of someone with an eating disorder.  This book literally speaks to that.   The great thing (one of, anyway) about this book is that the chapters are written by many different people so the reader can select a subject and get a good handle on an aspect of eating disorders.  For example, in the Overview Section, Margo Maine and Douglas W. Bunnell lead off with "A Perfect Biophysical Storm: Gender Culture, and Eating Disorders (p. 3)". I have already read two items in Section III (Special Populations); one titled "Borderline Personality and Eating Disorders: A Chaotic Crossroads" (p. 217) by Randy A. Sansone and Lori A. Sansone and a second by Amy Baker Dennis and Bethany L. Helfman titled "Managing the Eating Disorder Patient with a Comorbid Substance Use Disorder (p. 233)."  Amy Baker Dennis presented these two topics at the NEDA Conference in October and her and others' thoughts are represented in these two sections.  There's a section on Family Issues including thoughts written by well-known people like Kitty Westin whose family won their case against Blue Cross/Blue Shield after their daughter died from the effects of an eating disorder and before adequate treatment was approved by their insurance company and who used the funds to establish a Foundation.

This morning I read another chapter in Section V (Mind, Body, and Spirit) by Kimberli McCallum titled "The Case for Integrating Mindfulness in the Treatment of Eating Disorders" (p. 387).  Outstanding!!!!!  A thorough look at the theory and practice of mindfulness and how important learning this technique can be for one in recovery from an eating disorder.  I loved it. I think everyone should learn this technique, actually, which is why I love Thich Nhat Hahn's many books.

Unfortunately this comprehensive volume is rather expensive but I would call it State of the Art and a must read, chapter by chapter.  I've learned one can save a fair amount of money by ordering it from Amazon.  Perhaps others will begin to discount it to encourage a wider readership. 

A TEAM approach - how to keep recovery going after release from RTC or Inpatient

Updated 3/28/2019

As I’ve often repeated, it’s really hard to be the parent of an adult with a long-term eating disorder, especially if the disorder began a long time ago when information about treatment and parent involvement was so limited or prejudicial against the parent.  Now the eating disorder can be entrenched and the path is much more difficult.

I learned a saying in my NAMI Family to Family class (call or contact the National Alliance for Mental Illness) that was extraordinarily helpful to get me past the guilt and on into advocacy.  You don’t know what you don’t know.  Remember that.  Move on.

For those with children under the age of 18, I’d recommend taking a look at the F.E.A.S.T. site, as well as the NEDA Parent Toolkit and website.  I’ve created links right here on my blog.  

Take the admonition seriously that if your child has been diagnosed with an eating disorder, the situation is a medical emergency and there’s no time to lose.  Get your child into treatment.  

The situation for an adult is much more difficult, as I’ve already noted in other posts.  First, the adult child probably doesn’t want your help let alone your advice.  Cognitively they may already know that what they are doing is harmful but they simply don't want help ... yet. Their insight may be poor.  Many may be too ill to understand.    There's a great term that Dr. Xavier Amador talks about in his book I'm Not SIck, I Don't Need Help.  Anosognosia. Simply put, anosognosia is the lack of insight or poor insight due to malnutrition - their brain is starved.  Research has shown that with malnutrition, the myelin sheaths of the axons of the nerves becomes thinner and signals from one neuron to another go awry.  I learned about Dr. Amador's work and the term anosognosia in my NAMI Family to Family class in 2007 and refer to his book often!

It’s a tough place to be -- for you and for your adult child.  Keep in mind that you and he or she are battling the eating disorder AND you are their ally.

Sometimes, too,  family members find it difficult to accept that their son or daughter is seriously ill, especially if they appear to be within what they think is a normal weight range or if they say they are binging and purging "a little bit."   Know that if your son and/or daughter is binging and purging, they may suffer a heart attack and die due to electrolyte imbalances.

So, let’s say that your adult child decides that s/he wants to live and comes to you for help.  You get past all the hurdles of arranging treatment and your adult goes into treatment at a hospital/residential facility.  Check out the link to in the "Of Note" column re certification.   If you have a terrific relationship with your adult family member it’s possible that Family Based Therapy  as well as a firm grasp of a communication method like LEAP will get you there).  The FEAST site Around the Dinner Table as well as the book Skills-based Learning for Caring for a Loved One With an Eating Disorder by Treasure et al will come in very handy!

First, prepare for a firm approach with her/his/your insurance company.  What you want is at least 90 days of inpatient/residential treatment and better yet 180 days all the way through step-down, if this is available.   More if the disease is entrenched - meaning that your son or daughter has been fighting this disease for a long time and the behaviors have become solid habits.  You also want a facility that has a proven track record illustrating success in working with adults and they are approved according to the recent updated guidelines (2016) of the Joint Commission.  This point must also include the fact that they do not immediately eject someone who is considered "resistant to treatment" or "non-compliant".  Rather, the facility will and must have the staff who are highly skilled in working with someone in the first stages of recovery who often fight hard against any kind of treatment.  To call someone "treatment resistant" or "non-compliant" is to forget that many in the first stages are and need support to get through this phase; not shame.    Some RTC's have their own facilities including stepdown.  More are needed.

Ongoing discussions among those in the field are pointing to the need for a weight gain beyond what is currently supported before step down.  Work closely with the treatment facility and your insurance company and draw in resources to support this point of view.  Too many people are released too soon to a lower level of care.

On the insurance point, incidentally, Susan Maccia wrote an article for the Fall 2011 issue of the  Parent and Family Network Newsletter titled, Insurance 201:Single Case Agreements outlining how to obtain special clearance for out of network treatment or out of state (e.g.) treatment.  What this means is there is precedent established for insurance companies to pay for treatment outside their eg state boundaries, particularly if Medicaid is involved.

However, suppose such a facility in tune with the needs of adults is not a possibility or you cannot afford/no longer can afford to provide a residential setting for your adult  or your adult wants to get the heck out of there or not even go in the first place and insists that they can manage in an outpatient setting, referred to as IOP for Intensive Outpatient.

One answer could be a team approach.  Here’s a suggested optimum set up for what your adult child or even your not yet adult child will need upon release to keep her/him in recovery.  This is the TEAM that many refer to.

Dr. Paul Robinson in his ground-breaking book Severe and Enduring Eating Disorders (SEED) - Management of Complex Presentations of Anorexia and Bulimia Nervosa (Wiley-Blackwell, 2009), Chapter 6, recommends there be a care coordinator.  I address this topic at this link.  This role can be filled by a parent, especially for those working with a therapist trained in FBT who continue to have the energy and are building knowledge about eating disorders and how to help their loved one get into recovery.  For adults diagnosed with a long-term eating disorder and for their family members, I am recommending that they and the those in the field of eating disorders as well as insurance companies explore the possibility of hiring (and having insurance pay for) a professional case manager, perhaps one who is a psychiatric social worker with extensive clinical eating disorder training.  Those of us, like myself, who are now in their late 60's or 70's, need help.  

Assuming that the adult wants to live independently in their own place, arrangements need to be made at first for daily if possible check-ins by a neutral party.    Living independently can be toxic because it's easy for him/her to isolate -- fertile territory for the ED.  One of my dreams is to establish transitional living for those with ED's in more of a group setting that still provides privacy. There's a great model here in Tucson for women in recovery from drugs and alcohol called The Haven. I believe this model can be imitated and utilized. The program incorporates mentors who have "graduated" from the transitional program and return to help those entering the program.

In this setting, assume that Intensive Outpatient will last for at least six months to a year, perhaps more depending on need - this includes working with a skilled eating disorder therapist as well as an ED registered dietician or nutritionist connected with the IOP program.  If there is no nutritionist involved in the IOP program, identify one who is skilled in the treatment of eating disorders and verify his/her credentials.

The law firm of Kantor and Kantor has just published (March 21, 2019) a document written by Alli Spotts-De Lazzer, LMFT, LPCC and Lauren Muhlheim, PscD, FAED, CEDS-S, titled "Is Your Eating Disorder "Specialist" Really a Specialist?"  found at this link. 

If the IOP therapy  needs to be supplemented by another private therapist because of co-occurring brain disorder(s) for which there’s no skilled therapist available in the IOP, advocate strongly that your son or daughter engage one.  This therapist would be included in this team.  For example, if a diagnosis is borderline personality disorder, a certified skill in dialectical behavioral therapy is very important.

If the IOP program does not provide group therapy, your family member might benefit from participating in additional group and/or individual therapy, once or twice a week.   Often group settings pull out thoughts and remarks of others that give everyone a different perspective.

If the IOP program does not include meals or only includes, e.g. lunch if it's a day program or dinner if it's a late afternoon/evening program, then provision must be made for assistance with shopping, cooking, and especially sitting with the person during a meal for critical support/distraction, at least for awhile.

Several occupational therapy sessions would help, too, especially with a person who knows to take the steps in small pieces, one at a time.  An eating disorder disrupts one’s cognitive abilities and in many cases can stall growth in understanding or even necessitate the re-learning of skills like planning meals and shopping for meals, cooking and cleaning, balancing a budget, applying for a job, filling out applications,  studying for exams, etc.  For want of another term, a life or recovery coach is a good idea.  This article about the role of a recovery coach might prove helpful.

Recreational therapy could be part of this program, as well, unless it's incorporated into the IOP program.  For example, classes in yoga, art and/or music and/or dance, swimming, nature walks to e.g. a botanical garden, horseback riding (if the person is cleared by a doctor who has checked for osteoporosis), classes in crochet or knitting, writing.  Since intensive exercise can be one of a person's eating disorders behavior, this is advised against.

The incorporation of meaningful volunteer work may be an option, once the person is determined to be more stable.  Structure during the day can be very important.   

A member of the team should be a psychiatrist and a visit should be made at least once a month, probably twice in the beginning, for monitoring of behavior and medications.  This is especially important because medications can cease to be helpful and another may need to be substituted, the dosage may need to be changed, or dysfunctional behaviors may become more apparent after nutrition that need to be addressed.  For example, some people have an underlying brain disorder that made them vulnerable to the eating disorder and after nutrition is restored, the person’s behaviors signal this issue.

At the beginning of IOP, a check in with a medical doctor weekly or bi-weekly for electrolytes, weight, etc. is necessary.  Once progress is steady, these visits can be less often.  My family member sees her doctor once a month.

Dental Attention.  I posted a discussion about this.  Critical issue.  If your loved one’s teeth are decayed and painful, s/he’ll be less likely to eat let alone eat well.

Final point:  all members of the team must commit to communicating with each other.  And, your loved one needs to sign HIPAA releases for all to communicate with each other.  If your loved one will include you in this, particularly if you fill a role in, for example, advocating for support or as case manager, then ask for a release for everyone to speak with you.  

If this is not feasible, always remember that you have the right to communicate with every member of the team anyway, especially if you observe behavior that is harmful to your adult.

Update:  Note that some professionals dislike this kind of communication. I believe their refusal to receive it is to your loved one's detriment.  As we have discovered, and contrary to what some professionals believe, which is they can glean everything they need to know from a session or two a week, ongoing communication is very important. 

I've recently updated a piece on HIPAA and the work being done in this country to increase the ability of family members and others to learn about their loved one's health issues   (A work in progress.)  

Another approach could be to obtain guardianship.  Speak with an attorney who is experienced in mental health law for your state.  This can be an expensive and not immediate process but it may provide you with the tools to obtain better care for your loved one who might not have the insight or the impulse control to manage.

Dental Issues for those with Eating Disorders

Updated 3/27/2019

To start the discussion, this terrific article was shared with everyone by the author of the Facebook site, "A Voice in Recovery," a site that I recommend to those with loved ones fighting an eating disorder.

The article appears on the PR Newswire so if it disappears as a connection to the link, I'm posting a few comments here because I suppose you could call me one of the poster children for those who have recovered from an eating disorder.  

All these "secrets" I am sharing about myself here...  The thing is, one is only as sick as one's secrets as the saying goes for those not in recovery and again, if I can get one more person to seek help for their eating disorders, that's one less person who at the least will suffer from dental erosion and at the most die.

To quote the first two paragraphs of the article,

"While the connection between oral health and systemic health has been well-established, what most people don't know is that dentists often are in a position to detect systemic conditions.  According to an article published in the October 2010 issue of AGD Impact, the monthly newsmagazine of the Academy of General Dentistry (AGD), dentists may be the first health care providers to notice evidence of an eating disorder, such as anorexia nervosa, bulimia nervosa, binge eating disorder, and pica.

"That's because the first signs of an eating disorder can manifest in the mouth.  Sensitivity, tooth erosion, dry mouth, a high number of cavities, and enlarged salivary glands that cause swollen cheeks are signs that a patient may be suffering from an eating disorder."

Incidentally, a number of anti-depressants that are prescribed for those with eating disorders also can cause dry mouth, creating a perfect environment for tooth decay.

My situation was compounded by my early-1950's life in the jungles of South America where we could not get fresh milk (the cows were found to be tubercular) so we had to drink KLIM, powdered milk that came in a can that one would mix with water.  We kids drank other things, too, like UVA, a delicious grape soda or limeade right off the trees with lots of sugar.  A recipe for disaster.  On our first return trip to the States, my mom took us all the dentist and I was found to have fourteen cavities and this was pre-eating disorder!!!!!  Those were the days of the drill bit and no high tech stuff like numbing the gums before the novocaine injection, either.  As you might imagine, the dentist's was the last place I wanted to go for a very long time.

Fast forward to high school when I started binging and purging as well as restricting.  Now my stomach acids started to do their thing and worse, I would brush my teeth immediately after binging only to learn years later that brushing on an acid covered surface erodes the enamel even more.  So, don't!!!  As the above linked article notes, swishing out one's mouth with water to reduce the acidity is very important. 

Most of my teeth now have had root canals and most are capped.  If I suddenly had the genie in the bottle appear before me and ask what I might want for my three wishes, one would be an entirely new set of teeth. 

Take your child to the dentist or suggest to your young adult that a trip there is imperative.  Have them read what I just wrote.  A smile and good alignment is worth more than one ever can imagine, especially in the job market, and especially when you get out the check book to pay for the work involved to restore your teeth.

Consider, too, that teeth are part of the mouth/jaw structure.  One's bite can be severely affected by missing teeth.  Replacement with implants are expensive but do help.  Dentures work but aren't the same.  Take care of those teeth!!!

P.S.  My dentist has recommended three things to use to counteract the dry mouth effect of a medicationI am taking and all of these are available over the counter at your local pharmacy without a prescription:  a dry mouth mouthwash (there are two brands on the market and I noticed recently that the pharmacy has its own less expensive brand), a dry mouth toothpaste (this can be price-y but still worth it and also the same brands) and third an anti-cavity alcohol free flouride rinse to strengthen your enamel.  Note that the recommendation is for alcohol-free because alcohol-based rinses further dry out the mouth.  The kids version is alcohol-free and works just fine.  Also, keep your mouth well rinsed with water to keep it wet.