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A Parent Tells Her Story

IAEDP Chapter Meeting: a F.E.A.S.T. Parent tells her Family’s Story

Presented by Peregrine
For the Parent Stories Series at F.E.A.S.T.
(Spring 2011)

I am the mother of and firm advocate for my beloved daughter, a woman who has been fighting bulimia/anorexia for more than 20 years.  She is now in her late thirties.  I intend to talk about my experience as a parent in learning how to navigate the system where I live to help my daughter obtain assistance as well as offer suggestions for next steps.

I want you to know that I fought bulimia for about 15 years until I decided I was sick and tired of being sick and tired.  I quit 35 years ago and have been in recovery ever since.

I want you to know that my family has a history of depression, eating disorders/disordered eating, anxiety disorders and even suicide.  I did not know these details when my daughter first came to me for help in the late 1980’s because, she told me, she had begun purging at the suggestion of a friend in order to lose weight and had become hooked into it.  I have since learned a lot more.  Bottom line?  The propensity for this disorder runs in our family but I didn’t comprehend or understand this when her journey began.  I was told and believed that one month of residential treatment was enough.  Not true, not true by a long shot.

She did receive additional outpatient therapy over the next few years from a variety of therapists and then, as far as we could tell, she was in recovery.  Her eating remained disordered but we thought she was no longer purging.

I have come to firmly believe that ED’s are coping mechanisms gone awry and are somehow genetically based and even linked to other addictive behaviors thanks to extensive research into the work of many people who are devoting their lives to the study of eating disorders.  I also believe, along with authors Harriet Brown (Brave Girl Eating), June Alexander (A Girl Called Tim), Carrie Arnold (Next to Nothing) and Jenni Schaefer (Goodbye Ed, Hello Me and Life Without Ed) that I and so many other parents didn’t cause this.

I have learned that our family environment and learned behavior from our own family experiences can provide a climate that may need to be modified on behalf of our children.  I have learned better ways of communicating thanks to the wonderful work of Dr. Xavier Amador who developed the theory of LEAP and wrote about it in his book, I Am Not Sick, I Don’t Need Help as well as a terrific exercise I participated in at an eating disorders residential center based on the book The Five Love Languages by Gary Chapman.   And, I have learned about the success of the Maudsley Method that encourages refeeding at home coupled with Family Based Therapy, otherwise known as FBT.

We parents turn to therapists – rely on them, actually —  to help our offspring get on the path to recovery.   I also believe that my daughter’s recovery depends on a team effort that includes family members.  And, as Dr. Janet Treasure in England and others are helping the profession to understand, this disease turns a family and its members upside down and inside out.

By the time we get to therapists with our loved one, many of us are frantic with worry.  Not only that, but our family dynamics seem to be abnormal because everything and everyone is in disarray.  There have been times when I thought I would die of sadness and pain because of my daughter’s illness and my seeming inability to do anything to help her.  I was labeled overly enmeshed.  How could I not be?

The team approach/family-based therapy hardly existed in this country as recently as 2004.   That’s when my daughter descended again further into her own hell, finally cried out for help from us, and we launched a concerted effort to help her in any way we could with what we knew at the time, which wasn’t much.  Thus began a series of several residential treatments and many hospitalizations, the latest occurring right now with a goal of at least eight months of in-patient treatment — at her request and with her initiative – a major step forward.

Support for the carer was non-existent in 2004.  The family, as many of therapists know and perhaps learned during their training, was considered for many years and still by many to be the incubator for eating disorders, the mother being especially culpable.  In fact, my daughter emerged from her first long-term residential experience with the conviction that pretty much everything was all my fault.  That facility has since re-examined all of its theories and practices to involve family members and to work with them. However, after that first experience with Family Week, I lived under a cloud of guilt and blame until several things happened over the next two years:

The first was that two independent psychiatrists diagnosed my daughter with a co-occurring mental illness and emphasized, as well, a present and overwhelming depression and anxiety disorder.  What I had been suspecting for years – since her teens, actually, was finally being understood and actually documented in 2004 during her first involuntary commitment, as well as well as by a therapist at a residential treatment center from which she was ejected who recommended at least a year of treatment but could not explain why because of HIPAA laws.  I no longer needed to feel weird each time I spoke up and asked, “don’t you see something else? Something isn’t right. Please spend time with her.”

In fact, more than 65 percent of people who develop eating disorders have a pre-existing anxiety disorder.

The second was that a friend of mine suggested I attend a Family to Family several week course offered by the local chapter of the National Alliance on Mental Illness, better known as NAMI.  This course provided me with phone numbers, information about what to do in a crisis, a better understanding of the brain and of mental illness, what resources were available in our community, and an understanding parent group to which I came and they came for support.

The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed where I live.  If anything, because of our State’s cutbacks, the situation is even worse because many people are now taking generics of medications that are critical for their state of mental health.  Often, these generics aren’t the same as the original medication.  My doctor explained that the drug companies that make the generics have the leeway of anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  Funding has been cut to the agencies that provide services, as well.

The third was that I joined Al-Anon.  I was unable to find a parent support group for those with eating disorders.  This group and the parents on the “Something Fishy” listserv literally saved my life.  We share our experience, our strength and our hope.  Not everything applies but a lot does.  As the saying goes, “Take what you need, and leave the rest.”

And fourth, I was referred to an excellent therapist who took me on as her patient and worked with me so I could develop tools and behaviors that would help me in my role as an advocate.  Her guidance also helped me to replace my ingrained at times unavoidable hysterical involvement with healthier boundaries.  After my daughter returned to her destructive behaviors last year following six months of treatment, I despaired and my therapist referred me to a psychiatrist who interviewed me at length, has been following me for more than a year, and who prescribed a medication that with our joint tweaking has helped me deal with this ongoing situation as well as other crisis situations within my family.

Prior to pulling all of these resources together, I would go to bed at night and feel my heart beating raggedly in my chest.  I wasn’t sleeping well.  I was terrified that at any time I would receive a call that my daughter had died.  She insisted on living separately after her first two-month residential treatment experience in 2005.  Every time I heard a fire engine or saw an ambulance, knowing that my daughter had called these for help on many occasions, I would think the worst.  I had been overwhelmed watching my daughter’s sabotage of her self.  My marriage was suffering.  I knew I had to do something. And I learned that, like many parents, I was suffering from a post-traumatic stress disorder and I needed to get help myself.

I began to read and learn.  I read all the materials I could on eating disorders and mental illness.   I acquainted myself with the work and online materials of the National Eating Disorders Association.  I began to write about my experiences in dealing with the system here.  I continue to keep a log of everything including all medical records.   For family members, because of HIPAA laws, often those who care for our loved ones never receive critical information from previous experiences including, for example, the names of medications that are contraindicated or don’t work.  I do not hesitate to share this information.   I began to feel comfortable enough with my experience to share it with other parents – both my mistakes and our successes.

Because my daughter is an adult, I wrote an essay on a blog I developed  that includes steps one can take if one is the parent of an adult with an eating disorder as well as my extensive booklist.

To personalize my experience, beginning in August 2007 after another round of involuntary commitment, court-ordered treatment, and then failed treatment, I began to live in my car (so it seemed) for hours each day taking my daughter at her determined request to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs …. etc. in order to be admitted to treatment again.  It was not safe for her to drive.

I spent a chunk of many days in the waiting room of one of the mental health providers here learning, while I waited, about others’ experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help my daughter navigate the system only to see her fall through the cracks and almost die — at least four times — because although she was legally declared Seriously Mentally Ill (SMI) and assigned to a mental health agency, due to high turnover of staff no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up or because, characteristic of her illness, she refused to participate or seek treatment on her own.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.  I still am and still do.  It’s really important that family members ask for their loved one’s consent to do this.  My daughter gave consent.  Also know, however, that even without consent it is perfectly legal and okay to report changes in behavior to your loved one’s doctors and therapist.  Parents are with their children far longer than the hour in the doctor’s or therapist’s office!  I worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help (I know this happens; I saw it happen).  I know there are hospitals where I live that simply do not understand eating disorders — imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their “regularity”, hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated for her (learned at the same hospital during a previous ER admission) only to send a person into an extreme panic attack that culminated in an escape from the ER with an IV still in her arm?  She walked two miles home.  I had left the hospital earlier and was fourteen miles east of the hospital when I received a call from the hospital on my cellphone telling me that I was observed picking her up after her escape….  Can you imagine sleeping on the floor overnight of a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to legal involuntary commitment and evaluation procedures, I did that several times until I realized I’d run out of options and the doctors on staff just didn’t “get it”.

I know things can be better because one hospital stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  There is a mental health provider team in action that has gone to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is unavailable through the county system and as we know very expensive for the amount of time that should be spent in a facility to recover the lost “self” and the lost ability to feel hunger and/or fullness.

Residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  NAMI is very active, as well, to obtain parity with coverage of other illnesses.

If this hospital and this team can learn and change, so can others.  But, it takes resources.

And, I realized that no matter how much I learned and understood, the bottom line was that my daughter, an adult, needed to come to the conclusion herself that she needed help and that she needed to ask for help.

The limbo between knowing she was about to die and her decision to reach out for help occurred three times in the past three years, each time with a shorter time span in between descents.

My daughter was officially declared Seriously Mentally Ill for the first time in early 2005 and was court-ordered into treatment, following involuntary commitment and evaluation procedures instituted by wise doctors at the hospital to which she was transferred from the first residential facility that ejected her after only a few days in 2004 when she refused to accept treatment and follow procedures.  She became eligible for a variety of services.  Although she became and continues to be a client of a local mental health provider, she slipped through the cracks and because of HIPAA laws, as I stated earlier, I was unaware of several things until a crisis developed.  As well, because eating disorders are not well understood, assumptions regarding my daughter’s abilities and state of mind were incorrect and she received substandard care.   In other words, she could present herself as knowledgeable and “together” but, in fact, she could not sustain this state given her health, both physical and mental.

More recently I cannot say enough about the effort her mental health team has put into the plan for her ongoing treatment.  Getting there has taken a lot of effort by all members of her team, including me.  I have not hesitated to speak up, provide materials, and advocate for her.

I learned that in spite of an existing court order, the family is often left to make decisions like petitioning for an additional involuntary evaluation.  Each time I have petitioned, I’ve wrestled with the decision knowing not only would this course of action infuriate her, but it might also limit her possibilities later in life.  Yet, I believed, the step would save her from herself and hopefully save her life.  I learned that in spite of petitioning and seeing red flags everywhere, it’s possible for a petition to be denied anyway.  Hers was dismissed at a critical time.   I experienced what it was like to come upon the results of a desperate act that I sensed was about to happen.

As an aside, please advise your client’s family members that they should not under any circumstances go alone to their loved ones place of residence when they suspect that their loved one may have made an attempt on their life.  Call 911 or your local mental health agency and explain the situation and ask for a welfare check.

Imagine needing to call a lead person of the oversight organization personally to intervene to get your daughter admitted to treatment in local facility and then finally hospitalized only to experience the horror of learning your daughter was treated incorrectly in the hospital, after one horrendous episode of electrolyte imbalance at a local residential facility that advertised itself to treat eating disorders, to the possible point of complete disability?

To wrap up, I’m going change course and focus on what I wish would be available to every parent whose offspring starts to show signs of an eating disorder.  As I said earlier,  I’ve developed a blog that presents information I’ve learned along with links to substantial amounts of other research and experience.

Much is summarized in a letter that’s also posted on the blog.  It’s addressed to the parent who is new to all of this.

First, I wish all family doctors and dentists would be trained to know how to detect an eating disorder and what to do about it including what tests should immediately be run.  This information is available on a flyer from the the American Academy for Eating Disorders as well as the Something Fishy Website.

Second, I’m delighted that the IAEDP has begun a local chapter because I believe its presence will speed things up here.  There needs to be a list of all qualified and up-to-date in eating disorder theory and practice therapists, nutritionists, and psychiatrists.  This list should be available in doctor’s offices and at the least at local hospitals in the social worker’s offices, ER’s, and in school and college counseling offices.

Third, NAMI needs to incorporate information about eating disorders into its local efforts and programs.  Those with anxiety disorders and other mental illnesses often turn to eating disorders as a means to cope.  The two exist together.  They needed to be treated at the same time.

Fourth, local educational institutions starting at the grade school level should have the NEDA publications about coaching and for teachers in their counseling offices as well as in their sports departments.

Fifth, our community desperately needs post-residential and post- in-hospital treatment housing for adults working on recovery.   I believe it’s critical to have support services in-house something along the lines of retirement communities but for younger folks whose capabilities are on a higher level, as are most of those with eating disorders.

Finally, we parents need compassion and understanding from the therapeutic community.  It’s frightening and disorienting to watch a healthy young person get trapped in a path towards death.  We need more parent support groups or the knowledge of the existence of parent support groups that meet at a convenient time and often.  I believe there are guidelines through NEDA regarding how to start one and how to manage it.

Thank you for inviting me here to share my story.

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