A Case For Palliative Care

This post has been updated on November 16, 2023 to include a proposed treatment care model published in September 2023 and to clarify terms used.

Note that palliative care is not the same as hospice.  

Palliative care (PC) is a type of medical care that aims to improve the quality of life for individuals with serious illnesses. People in palliative care may receive medical care for their symptoms along with treatment intended to cure their serious illness.  Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family.  There is no time limitation.

Like palliative care, Hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person's illness are stopped.  Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.

Two years ago, I wrote a post supporting palliative care as an option for a person diagnosed with a severe and enduring eating disorder - often referred to as SE-ED or SE-AN.  I believe that an adult who has been struggling with an eating disorder for a very long time - some put the stage at ten years or more but given so many advances I would argue for 20 years or more -  without successfully getting into recovery ought to have the option of receiving palliative care.  I also believe that the cost of palliative care should be covered by one's insurance policy including Medicare and Medicaid.  

A palliative care model appeared in a peer-reviewed paper published in The AMA Journal of Ethics (September 2023 Volume 25 #9: E703-709) titled "A Life Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa" by Jonathan Treem, MD, Joel Yager, MD, and Jennifer L. Gaudiani, MD, CEDS.  If your family member's illness is entrenched, I encourage you to read their paper.

The peer-reviewed paper provides a model that is designed to enhance the lives of people who otherwise might lose the will to live.  I tried something similar three years ago but because the program I proposed was not fully supported by my daughter or realized because some staff members weren't clear on their roles, it didn't work (see below for a description).  I do think my daughter might have had a chance but the odds were not good at that point.

On March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by the international organization F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City.  Several presenters at ICED came to provide summaries of their presentations.  The concept of severe and enduring eating disorders was raised and discussed and I offered to initiate a discussion that would generate a document - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  

At that 2019 meeting and since then, I learned in private discussions as well as on the F.E.A.S.T.  gathering place called Around the Dinner Table or ATDT, for short, and on private Facebook groups, there are many people whose family members or friends are struggling with an entrenched eating disorder.   Yet few talk about it.  The climate is for hope but sometimes the strong expression of hope comes at the expense of the feelings of those who sense that it's time to consider something else.  We must help those families.

Unfortunately, I was unable to follow up on my offer.  My family member's health continued to decline and her welfare came first.  We began to discuss palliative care.  

As we know, many people with eating disorders - especially anorexia - whose illness becomes entrenched are also dealing with multiple diagnoses such as extreme depression, generalized anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance use and become addicted because no pill or treatment yet exists to stop their disorder.  In other words, they are self-medicating, perhaps with something as benign as nicotine or as destructive and dangerous as illicit drugs. We have learned these illnesses must be treated concurrently for recovery to be a possibility. 

They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined by the staff to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!).    

They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or needed short term hospitalizations over many years to stabilize.  

And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level of care too soon.  

Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized.  

So, they demand to be discharged against medical advice (AMA) thereby potentially and usually losing the ground they gained while hospitalized.   Consequently, many have given up on treatment, regarding themselves as failures.  Many have become poorly motivated, socially isolated, chronically ill, are filled with despair, and lack trust that anything might work and have carried on this way for more than 20 or 30 years.

Now imagine people who have been struggling a long time with these, now chronic, illnesses.  Their lives have become subsumed and even the glimmer of the idea of a life worth living may have evaporated.  Maybe all they want is to fall asleep and never wake up.  They know they will need ongoing psychiatric and medical care for the rest of their life to address cyclical weight loss and potential electrolyte imbalances as well as heart arrhythmias, osteoporosis, loss of muscle including muscle of their heart, malnutrition and other side effects of more than 20 or 30 or more years of cyclical starvation as well as, for example, binging and purging.

I believe Palliative Care must be an option yet, again, the concept immediately brings to mind hospice, which palliative care most definitely is not.  Yet here in Arizona and I imagine elsewhere in the United States and around the world, the practice of palliative care for those who are chronically ill with anorexia is still in its infancy and unless the individual has endured kidney or liver failure, for example, even palliative care is deemed unavailable to them as I had learned four years ago when my daughter first asked to explore this option.  

Anorexia carries the second highest death rate of any mental illness.  

In 2019, Dr. Jennifer Guadiani published [Routledge Press] her outstanding medical text Sick Enough: A Guide to the Medical Complications of Eating Disorders. 

 Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders.  Not only does this medical text, written for both the professional as well as the parent, address all manner of complications of eating disorders, Dr. Gaudiani also devotes a section to older patients and to those with substance use disorders (more common than you might realize).  Yet to me, given the stage of the illness for my family member, the most valuable chapter is Chapter 22 titled Caring for the Patient Who Declines Treatment: The Spectrum from Mandated Treatment to Hospice Care.  Pages 240-241 are relevant to this discussion.

Rather than spend a lot of time paraphrasing what Dr. Gaudiani has written, I decided to quote a section titled Palliative Care in Severe Persistent Mental Illness on page 240 because I think this goes to the heart of what I believe is absolutely necessary in the spectrum of care for those with severely entrenched eating disorders.

Dr. Gaudiani writes, "....There is no magical number that qualifies a person for palliative care, no number of times hospitalized, age, years with the disorder, medications tried, nor expected prognosis.  Ultimately it's the whole story of each patient that helps guide clinicians....."

Dr. Gaudiani goes on to write, and I emphasize, "....Palliative care efforts can go on for years.  If and when a patient becomes sufficiently nutritionally compromised that they are unable to care for themselves independently, a move toward hospice services can be made."

So....the second time my daughter raised the subject of Palliative Care during the year before her death, I contacted a local agency that advertised "medical care for life" and explored the concept with the director and what might be organized to address the specific needs of my family member.  

It is important to emphasize although the diagnosis might be the same, each person is an individual with a history that dictates specific needs.

Since my daughter was rejecting hospitalization because a local hospital's psychiatric staff appeared to no longer be able to consider her case objectively, we needed to develop a plan that would provide her treatment in her home and at the same time recognize and identify those situations when hospitalization to address her medical  needs was necessary.  Her team plan included oversight by a nurse practitioner who would visit once a month, another nurse who would visit weekly or more often as necessary, a psychiatrist to prescribe medications, and a therapist/MSW social worker.  She would continue to see her medical doctor as well as check in with her mental health agency's psychiatrist and team, all who were in agreement with this approach. The cost was reasonable ($400/month) and would be paid out of pocket.  This plan never got off the ground due to many ongoing factors but I offer it as a possibility.  

Instead, the pre-existing team members continued to do all they could to provide her with important elements that eased her anxiety and supported her medical and psychiatric needs for which I am very grateful.

Certainly Palliative Care should become an option for those who need the support and comfort that is not currently available for those diagnosed with a severe and enduring eating disorder.  I urge professionals in this field who might be reading this essay to explore the widest range of options and to fight for and request legislation to support a different level of care provided by medical insurance for their patients who have severe persistent anorexia nervosa.

The Eating Disorders Coalition Lobby Day - October 28, 2015 - The Anna Westin Act

From the Mom's March on Tuesday to Lobby Day on Wednesday!

This year, as I've mentioned in previous posts and updates, we are lobbying for the passage of the Anna Westin Act.  As you'll note at the top of the page above, the Act has the dual designation H.R. 2515 and S. 1865.  This is quite significant - a document in the House and in the Senate, right out of the gate.  Rather than review here what's said in the document, I invite you to read this document.

I also invite you to visit the website of the Eating Disorders Coalition - http://www.eatingdisorderscoalition.org/   

When I originally wrote this last Fall, there were several links the addresses for which have been changed or deleted, unfortunately.  Among them was a great link to an Advocate's Toolbox that clearly explained the training we received.  We learned how to focus on the key points we wanted to make to each Congressperson in the half hour we had.  For newcomers to the advocacy process, this piece also clearly explained how a bill progresses to signature.  I imagine that with some diligence you may be able to find this information by going to the main EDC website linked above.

I am very happy to report that two of our Arizona legislators - Representatives Ann Kirkpatrick and Kyrsten Sinema have signed on as co-sponsors.

I urge you to ask your senators and representatives to support this legislation and to get it passed as soon as possible. 

So, now, I invite you to think about this following information:  The United States of America is composed of 50 states, a federal district (the District of Columbia), five territories and other possessions.  Each state has representation at the federal level - 2 senators and a varying number of representatives depending on the population of the individual state.  There are currently 435 voting members in the House. California, the most populous state, has 53 representatives.  My state, Arizona, has 2 senators and 9 representatives. 

Arizona is also estimated to have, out of a total population of 6,392,017, 66,934 males and 147,167 females with eating disorders.

The Eating Disorders Coalition tasks itself twice a year with the responsibility of organizing a lobby day and sending teams of citizen lobbyists to meet with their senators and representatives.  This year we learned that more than 300 people signed up to lobby - some states had many lobbyists, others as few as 1 or 2.  All came paying their own way and finding lodging as they were able.

The scheduling of each team's agenda, all with different people in different locations (except for the common meetings), boggles my mind!!!!  Having arranged conferences with breakout rooms, I have some experience with scheduling (including lunch and breaks), but the task the Eating Disorders Coalition team takes on twice a year is absolutely amazing and deserves accolades.  For this effort alone, I have become a financial supporter of the EDC and I hope others have or will, too.  

Omigosh.  Think about it.

As an example, our team's (8 people) lobbying day schedule included a training (for everyone) from 8 a.m. to 10:15 a.m. at a location quite close to Capitol Hill and the Senate/House office buildings.  It ended with a lobby day wrap up starting at about 4:30 pm back at our training location.  In between, our team met with, for half an hour, staff members of our two senators in the morning, broke for lunch in one of the cafeterias from about noon until 2 p.m., at which time we all gathered to hear more about the Anna Westin Act of 2015 and to meet two of the original sponsors of the bill, and then continued our lobbying from 3-4:30 pm in the offices of 3 of our 9 representatives. We walked a lot and very fast between the offices and buildings of our Congressional representatives.  Thank goodness for tunnels and helpful people who showed us the way given that it rained pretty much all day.

So think about this again - 300 lobbyists, 100 Senators, 435 Representatives.   Not only are more lobbyists needed, the EDC also must identify which of the Senators and Representatives are available and willing to set aside time for us and among those, which are key players in the advancement of the legislation (e.g. on what committees do they sit).  I realize it's more complicated even than this, but I wanted to try to get a handle on what was involved to put this on.

Our Arizona team of 8, most of whom were from the Phoenix and points northwest area except for me, the lone member from Southern Arizona, in the morning met in the Russell Senate Building with (in order) the staff members of Senator Jeff Flake and Senator John McCain in nearby conference rooms reserved for that purpose.  

Our team leader and a mom, Miriam, presented information derived from the above flyer - Training, Clarity of Parity and Truth in Advertising and statistics specific to our State regarding the number of people affected by eating disorders.  She noted that the Anna Westin Act has a Congressional Budget Score of 0 meaning that the cost of passing the Act is very low (funds have already been allocated to the NIMH and SAMHSA in connection with the Mental Health Parity and Addiction Equity Act of 2008) and summarized the purpose of our visit. Then two team members spoke of their individual experience, either as a mother or a person in recovery or as (in our team's case) a member of the staff of an eating disorder residential treatment facility.   I spoke twice - once in the morning and once in the afternoon, presenting as the mother of a 42 year old woman who has been fighting her eating disorder for 27 years and who had been diagnosed before there was much if any understanding about and the treatment of eating disorders.  Excellent counterpoints were presented by team members in recovery who had benefited from early diagnosis and effective, knowledgeable treatment by health professionals. We then invited questions from the staff members.

I hope to obtain a team photo, but in the meantime here I am outside the door of Senator McCain:

We felt welcomed and listened to and hopeful that the Senators would be persuaded to sign on.

We then walked the tunnel to I think the basement of the Dirksen Building where we enjoyed lunch in one of the many cafeterias available.  Nearby was the Senate Gift shop that we all explored, as well.

At 2 p.m. we gathered in a large meeting room in Dirksen (106) to hear from Kitty Westin and to meet original sponsors of the bill Senator Amy Klobuchar (MN-D) and Senator Kelly Ayotte (NH-R).  Notice the bipartisan (meaning from different parties) support.  In fact, the act has significant bipartisan support now in both the House and the Senate.  Each Senator received an award.

From there our team went on to the House Office Buildings - Longworth House and Cannon House - to meet and talk with staff members of (in order) Congresswoman Martha McSally (AZ-R), Congressman David Schweikert (AZ-R), and Congressman Paul Gosar.  We learned that while the senators in the "Upper House" had significant amenities such as conference meeting rooms, our representatives in the "lower house" devise creative solutions in order to meet with groups of lobbyists such as ourselves ranging from the corridor outside the office to a waiting area within an office to cafeteria areas and even to a storage area across the hall that has comfortable chairs!!  Our team managed  to present our case to all and again were welcomed and listened to with undivided attention.  Here I am at the door of Representative Martha McSally who I've had the pleasure of meeting and speaking to in private (about other issues like the A-10) at two gatherings prior to her decision to run for office.

We wrapped up our presentations after 4:30 p.m. and hurried back from C Street and up 2nd Street to the Capitol Hill Lutheran Church of the Reformation nearby.  Fortunately since my hotel was nearby, I was able to guide us all there quickly.  Everyone answered questions and shared our experiences before disbanding to either hurry and catch transportation home or to find a restaurant at which to have dinner.

I returned to my hotel and hopefully made my way to The Sonoma on Pennsylvania Avenue where I had not made a reservation figuring, mistakenly, that 6 p.m. wasn't too late to show up. (I had eaten at the Sonoma on Monday night arriving at 5:30 and hardly anyone was there.)  Well, the place was hopping with people pouring in and climbing upstairs to what I assumed was a Happy Hour area.  I was shown to a little table over in the corner near the bar (that suited me just fine), ordered a glass of wine and a bowl of soup to start.  I looked up to see a familiar face walk in - that of Heidrun D who had traveled down from the Boston area for the luncheon and March on Tuesday and lobby day Wednesday.  I invited her to join me and we spent quite awhile chatting and reviewing our experiences in Washington, DC as well as sharing our own stories.  

Thursday morning I had the luxury of sleeping in, did a bit of tourist-ing since I was so near everything and then made my way to the airport for the trip home.   I checked my bag so I wouldn't need to worry about it and settled in to finish a book.  I thought you'd get a kick out of the airport scene that greeted everyone at the Southwest counter.

What an action and emotion-packed trip!

Eating Disorder Recovery is a Process/ED Treatment Must Be As Well

Among all the messages coming at the public in the media this week are those focused on eating disorders, thanks to the growing initiative known as Eating Disorders Awareness Week.  Some of the messages are personal; i.e. they are stories.  Stories tend to grab attention as many of us know which is why the Eating Disorders Coalition has worked so hard to create the means for families to tell their stories to legislators on Capitol Hill.

This work extends beyond Washington, DC to individual states like Arizona where yesterday, Senator Katie Hobbs introduced a resolution to our Legislature.  Here's her resolution:

Yet stories present "just" one perspective on a disease that we know now is biologically based and that research is revealing appears for reasons that aren't quite understood.  So, to educate the public somehow these stories in the media especially this week need to be couched in a constantly updated base of information about eating disorders.  Some pieces are introduced with that kind of information; others are not.  Some continue to highlight the relationship between mother and daughter/son in ways that can be interpreted as blaming.  The media needs to get beyond this blaming message by improving the message and one of the ways the media can do that is by introducing the story with, perhaps, a few sentences that emphasize that eating disorders are, in fact, biologically based illnesses.  The how remains the question and many are working on a solution including organizations like F.E.A.S.T., NEDA, ANAD, NAMI and others as well as dedicated researchers.

Yet this is only part of the entire picture.  The other part is the necessary acceptance by all concerned -- parents, the medical establishment, insurance companies, the legislature, and the individual herself/himself who may or may not be aware of their role in getting well -- that recovery is a process and not just dependent on one stay in a residential facility or a several months-long effort on the part of a team including the family.  Many of us have learned that the potential for the reappearance of the illness may be a life long tendency. 

In addition, the recovery process depends on the Establishment's/the public's awareness that treatment of eating disorders must be carried on in the same way that treatment is provided for other biological illnesses.  So, for example, a person with diabetes or multiple sclerosis gets on-going treatment covered by insurance (one hopes and that's another topic) and monitored on an ongoing basis, as well.

This is not as simple as it looks.  Those with illnesses like diabetes can monitor their own illnesses through daily tests and periodic doctor's visits.  The treatment of eating disorders, because they aren't well understood yet, isn't as easily defined.  And often, the brains (thinking processes) of those with eating disorders are so compromised that they are unable to monitor their "state".  So, a system needs to be put in place for this illness that provides ongoing coverage by insurance so that anytime a person with this illness falters, s/he can return to more intensive treatment to get back on track without having to jump through hoops to get it.

In other words, the door to treatment for eating disorders must remain open and methods of treatment (both physical and psychological) must remain flexible to address that person's changing needs since this disease affects people of all ages.  All too often doors are slammed shut without alternatives provided.  This situation must change, especially for those whose eating disorder has been progressing for a long time.

The bottom line is that we need legislation to make sure that insurance providers and the medical establishment remain as open to the need for ongoing  treatment  of eating disorders as they are for diseases like diabetes.  In addition, we need the education/continuing education of doctors and therapists to include the latest information about treatment of eating disorders and the incorporation of this information into the required re-licensing of all.

F.E.A.S.T. Conference 2014: Remember to Take Care of Yourself, Too!!

March 28 2019

A few years ago, I flew to Dallas to attend the 2014 F.E.A.S.T. Conference, Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders.

Three of the speakers - two presented together - focused on a critical aspect of the Circle of Care; namely, the caregiver(s).  This topic is often overlooked because so many of us are focused on the Knowledge Base rather than on the Circle of Care.  However, without a strong Circle of Care -- whether it's composed of mom, dad, partner, aunt, uncle, brother, sister, grandparents or friends to name a few -- the well goes dry.

Those of us who make up that circle must take care of ourselves.  So, how can we do that?

I attended the session titled "From Hopeless and Fearful to Empowered Caregiver!" by Becky Henry, CPCC, who is the Founder of the Hope Network, LLC and a member of the F.E.A.S.T. Board of Directors.  The second session, presented by  Karl and Ellen Kregor,  the grandparents of a young woman who attended the conference, was titled "Extending the Circle of Care: how can extended family support a loved-one with an eating disorder".  [I wish I could have attended both and I look forward to watching the video of the Kregor's session.]

I've written previously about the enormous responsibility taken on by parents and other family members and friends who step up in one way or another to ally with a person who is fighting an eating disorder.  I've written about my own recovery, both in terms of learning how to advocate for my loved one in a healthy way - i.e. taking care of myself; as well as my own recovery from bulimia more than 35 years ago.  If you've been reading my and others' blogs, you probably have seen terms and phrases like in the trenches; post-traumatic stress disorder;  it's a marathon, not a sprint; help! 

Emily Long, LPC, developed a list, a link to which is no longer available, about Extreme Self Care (which is also the title of a useful book of the same title by Cheryl Richardson - The Art of Extreme Self Care).   I've reprinted Emily Long's list of 100 items below.  Many of these suggestions are on my own list and I've added a couple more.  One of the first things Becky Howard asked us to do at the start of her presentation was to make a list of what we do for self-care.  Did you know that smiling releases endorphins?  that laughter does the same thing?  Even if you don't feel like smiling, smile.  I always feel a shift; I'm pretty sure you will, too.

As family members, our goal is to identify things we can do -- if only for a moment or a few minutes, or an hour, or an afternoon -- to take a break.  To re-nourish our spirits and our bodies.  To reconnect with our own support system.  Frankly, I truly believe it's impossible to carry on without these kinds of activities.  Some of the suggestions are beyond the means of some readers; others just aren't possible given time contraints.  But, all offer a way to disconnect, recharge and take a long drink from that Well, the gathering place for women over the ages.

Post the list where you can see it!   On the refrigerator, on your mirror, by the front door.

Thanks to a meeting I attend just about every Saturday, I've learned the acronym H.A.L.T.  It's a reminder that if I am hungry, angry, lonely or tired, I need to halt what I'm doing and take a break.  Here are some ideas:

1. Naps
2. Massage
3. Have an Adventure Day
4. Read (easy, fun reads though, not self-help or professional books!)
5. Snuggle with the cat (or dog or baby or kids)
6. Hugs
7. Long walks and/or hikes
8. Bubble baths
9. Movies (again, easy watches – not horrific documentaries or violent battles or super sad ones that remind you of your own losses)
10. Order dinner in (or have someone else make it)
11. Say no
12. Buy yourself flowers
13. Sip a mug of hot, soothing tea
14. Play in the snow
15. Dig your toes into the sand (dig your toes in the grass.  Remember the movie Pretty Woman?)
16. Feel the sun (or rain) on your face
17. Hold hands
18. Meditate
19. Get a facial
20. Listen to your favorite music
21. Make a delights list
22. Do something on your delights list
23. Repeat above (over and over)
24. Acupuncture
25. Snuggle with your partner
26. Have sex
27. Journal
28. Turn off the computer, cell phone and TV for 24 hours
29. Go on a retreat
30. Sit and people watch
31. Garden or even weed!
32. Do something creative (draw, knit, crossstitch, paint, cook, write, color, make a collage, etc.)
33. Daydream
34. Dance with a child
35. Have a Harry Potter movie marathon (it’s a personal favorite!)
36. Take a mental health day from work
37. Keep your daily to-do list to 3 items or less
38. Swing on the swings
39. Have energy work done
40. Have a laugh fest with your best friend
41. Eat simply
42. Break up with your TV
43. Allow yourself to cry and experience your emotions
44. Join a support group
45. Get a pedicure (or manicure)
46. Tell yourself “I love you”
47. Browse your favorite bookstore (or music store)
48. Have a game night with friends
49. Write thank you notes to those who have touched your life and inspired you
50. Spend the day exploring your town – go places you don’t normally go
51. Practice random acts of kindness & senseless acts of beauty
52. Write a love letter to someone you love ( doesn’t have to be a partner)
53. Write a love letter to yourself
54. Have a “Freedom from Self-Improvement Day”
55. Listen to Holosync
56. Color (try going outside the lines – its fun!)
57. Keep a gratitude journal
58. Talk a walk with your camera – take pictures of all you see that delights you
59. Find and notice something beautiful every day
60. Do something badly.  Keep doing it.
61. Admire beautiful artwork
62. Do absolutely nothing
63. Do one brave thing everyday
64. Play
65. Treat yourself to something
66. Wear something that makes you feel beautiful or handsome and confident
67. Have an “All Day PJs Day”
68. Say I love you everyday
69. Jump in piles of leaves
70. Quit the job you hate that drains you
71. Say YES to what you truly love
72. Give yourself permission
73. Let go of belongings you no longer love or use (even family heirlooms)  Also applies to relationships
74. Hire someone to clean your house
75. Hire someone to mow your lawn
76. Let go of your story - aren't you tired of it?
77. Laugh
78. Be generous
79. Lay in the grass and watch the clouds
80. Take a long walk with your dog
81. Ride horse
82. Give up New Year’s Resolutions.  Pick a word instead
83. Stop drinking caffeine
84. Dance around your house
85. Forgive others
86. Forgive yourself
87. Make a list of the things you want to do in your lifetime
88. Do one of those things
89. And then do another
90. Eat healthy, whole foods
91. Eat something unhealthy AND enjoy it without self-criticism or guilt
92. Watch cartoons
93. Read the comics
94. Smile for no reason
95. Call the friends you’ve been meaning to call
96. Go complaint free
97. Schedule a day of no schedule
98. Go boat riding
99. Buy yourself a cheery balloon
100. What do you do for extreme self-care?
101. Seek therapy/psychiatric care
102. go outside in a rainstorm and splash through puddles
103. Walk through your local nursery.  I did and took a photo of the petunias at the top of this page (and then bought the basket and brought it home).
104. Eat a piece of dark chocolate
105. Give Up [this is not what you think so read my definition just below]

#105 - Give Up - is an important one for me.  Somewhere along the line through these many years I realized that to Give Up does not mean to quit; rather, it means to give it up to God so that S/He can relieve me of my worries and cares for awhile.  Another similar expression is "Turn it Over."  In the middle of the night when I wake up, I now envision God wrapping my loved one in a white soft blanket and holding her so I can get some sleep.  This image has helped me countless times to get the necessary sleep to carry on.

#101 - my own experience re seeking therapy/psychiatric help

To close, my mother who was part of my family member's (and my) Circle of Care loved to needlepoint.  She created this for me so I would remember that I do not have to "do it" alone:

Guest Post by Marjie Ruth: Memorize and Repeat - Be Consistent and Persistent

[This post seemed especially pertinent to me this week.  I often fail in my efforts to establish and maintain healthy boundaries.  Practice, practice, practice.]

Let us not look back in anger or forward in fear,

but around in awareness.

~ James Thurber

 The other week I was communicating with one of our mom's who is currently going through a challenging time of growth with her daughter. "Time of growth" might sound like something of a euphemism when used in reference to dealing with a loved one who is in a serious (sometimes life or death) struggle with their disorder and things don't seem to be going very well. How can a relapse or regression be termed anything so trivial or pleasant sounding as a "time of growth"? Shall we call living on the edge of Hell just a period of "cozying up to the fireplace"? Nope, I'm not underestimating the amount of pain that families go through (lived there, felt it) when the things get rough. Periods of growth, or struggling to grow, are challenging and difficult. Remember the common term growing pains? Yes, now you know why the word pain is used. Growth can be very, very painful and generally the level of pain correlates directly to the level of dysfunction involved. So what might be a less painful though perhaps still somewhat stressful step for a more highly functioning person, is a real crisis with an uncertain outcome for someone battling a serious addiction or personality dysfunction or other mental illness. 

At all times and especially during the challenging moments with our loved ones, it's especially important for each of us to be consistent and persistent in the establishment and maintenance of healthy boundaries. Be consistent: be clear to yourself and your loved one as to what your boundaries are and say the same thing over and over if necessary (see: persistent) to stay on point and to get the point across that you mean what you say; be on the same page with your spouse, or partner, or other involved family members so that the message is consistent among all; avoid second guessing yourself--especially under pressure--and retreating back to your old comfort zone of enabling behaviors. Be persistent: stay the course as growth and change generally take much longer than we would like, hope, or expect. So often we give up and give in without realizing that we just veered off the path of the goal we so wanted (growth and change) and have derailed recovery because it was simply too uncomfortable for us.  Frankly, it's no fun being a border control guard, but that's the role that we pretty much must assume in order to protect and enforce the boundaries that we establish with our loved ones. It's difficult because their addiction will constantly want to test those boundaries to find the weak chink and attempt to break through. That's what desperate disorders/addictions do. They fight for survival through exerting control over their host--your loved one. Sound like an invasion of aliens? That's what it often feels like to us, but to them it just feels like trying to make it through another tough, tough day.  

And it can be tough on us to feel as though we're being harsh and mean and cold by enforcing the "rules", but I guess that is simply the way it feels when we have to stick with healthy boundaries against the onslaught of a very ugly disease. Addicts retreat repeatedly to the "comfort" of their addiction because it feels good/safe in the moment. And then when that brings negative consequences down the road, guess what they do to deal with those bad feelings? Yup, it's back to the addiction for another comfort fix. The struggle for recovery can be very painful for everyone involved or affected by the addict. What we need to constantly remember is that one good result does not a cure make. In other words, the lure of the addiction is so strong, it takes a lot of new learning and growing to get to a place of being able to resist it. So that means we must continue to stay grounded in our enforcement of boundaries for a long long time...for always. 

Wishing for you strength, courage, peace, and hope.

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

The Wellness Recovery Action Plan - W.R.A.P.

Almost two weeks ago, as I was sitting in a Crisis Center Emergency Room, a peer counselor started a conversation with me and introduced me to a program I'd not heard about before called the Wellness Recovery Action Plan.  I have since learned that this program is being used in other countries and is gaining traction in the United States as well as in my own community's mental health teams.

Here is the link:  http://www.mentalhealthrecovery.com/wrap/

The peer counselor handed me his copy of the manual (can be ordered on line) so I could browse through it while I was waiting.  My brief cursory review told me three things:

first, that the program actually is quite simple, straight-forward,and relevant;
second, that I might even be able to use it for myself, as a parent; and
third, that the forms included in the manual can be copied and used.


I ordered the manual and will write further, have adopted some of the practices, and wanted to provide another avenue to get this information "out there."  The acronym KISS comes to mind in a good way.

Marjie Ruth: Are you adapting or changing.......

Another gem from Marjie Ruth.  As usual, at her request for those who might want to re-post this, please include her contact information found at the end of her essay.  Please consider leaving in as well the information about the support group she sponsors in case someone in the Tampa, FL area needs support and reads this.

I raised this topic last week in my meeting. No matter how many Al-Anon meetings I attend, how diligently I work my program, or how many times I repeat/review the Serenity Prayer and other valuable teachings, I still come back to this.......

"Our ability to adapt is amazing. Our ability to change isn't quite as spectacular."

 ~ from The Spellman's Strike Again by Lisa Lutz

Dear Family & Friends of the Eating Disordered (ffed);

Our support group will be meeting this Wednesday evening (9/11) at the Hyde Park Counseling Center in Tampa at 7:00pm, as usual. The ABA 12-step group is also continuing to meet at the same time, same place. Yes, it's an historic date that brings back memories just saying the date. 9/11 - where were you when you heard the news of the terrible tragedy taking place? We'll share that with each other at our meeting. And here's a thought: anyone under the age of about 17 has no memory of that day, so for them it will be yet another event to learn about in history class. Perspective changes everything. 

But let's move on to this week's opening quote which is from a very lighthearted, fun book. Actually, this is the 4th book in what has developed into something of a series, and I'd recommend reading the other three first, beginning with The Spellman Files. These books fall into the genre of "Something I Can Read That Absolutely Won't Depress Me & Actually May Make Me Chuckle"...and every few moments spent reading such, ends up being a micro-mini vacation for me. Ahhhh, sweet mindless escape. Are you surprised? You don't actually think I sit around reading books all about eating disorders do you? Heck, no. That would be a short path to depression and insanity. Dealing with a loved one's disorder is punishment enough. 

Now that's not to say that I haven't ever done such reading. I've indulged in my share of psychology text book searching complete with yellow highlighter at the ready. There's a bookshelf above my desk that holds a fair size assortment of books relating to eating disorders, some better than others and at least one that was a huge mistake. I've even spent time in a university library digging into medical books and journals with determination and a zeal to find some answers or at least some meaningful clues. My passion at that point was born out of a raging desire to find a way to get my loved one better, as in "back to normal healthy in mind and body" again. We seemed unable to find any professionals that could help, so I was determined to find the way myself. And there was nothing really wrong with my stumbling efforts to become educated, except that I harbored the delusion that I could make my loved one recover. I have never given up my desire to have my loved one be healthier and happier--that is a mother's plight. What has changed is that I've gradually come to the understanding, that I can't do it for her. 

With this realization comes release: release of my energy being funneled into trying to take control of her disorder; release of the unrealistic desire that there is some magic formula that will make it all better, ie The right treatment program or The right pill; release of the notion that the more I focused on fixing things, then surely my efforts would be rewarded. But don't think that I released such patterns of thinking and behaving easily. Ha...far from it! Please refer to the opening quote which very concisely sums up my journey with ED. Our ability to adapt is amazing. Enabling is a form of adapting to disordered behavior. Our enabling just makes our loved ones more able to indulge their addictions. We adapt our life patterns of thinking and acting to accommodate their addiction. Even upon recognizing this--as the second part of the quote points out, Our ability to change isn't quite as spectacular--changing our behavior is anything but easy. I still find myself slipping back into old thought patterns and needing to regain my footing and even re-examine choices in light of possible enabling that has crept back in. It seems that the only constant in life is change, and yet I'm consistently balking at & even feeling incapable of changing my behavior or thought patterns.

For anyone, change is not easy, either to accept or to achieve. For someone with an addiction, no matter what it is, change is terrifying and seemingly impossible. "They" need to change their addictive ways. And "we" need to change our enabling ones. Both tasks require a great deal of time, determination, and practice. 12 step meetings are there for all of us. Plenty of books provide helpful encouragement and advice. But for each of us, taking good care of ourselves is a critically important point. We need to treat our bodies and our minds in a healthy manner, and one ingredient in doing that is taking the time to rest and recreate. 

Which brings us back to the books by Ms Lutz. When was the last time you treated yourself to some quiet, non-working, non-stressing time? If you had trouble answering that inquiry, then it's been too long! I encourage you to find yourself a good book and a comfortable chair in a quiet spot and work on some recreational therapy for yourself. Put the cell phone on mute, let the computer hibernate, and turn off the guilt. Start small if you need to, but try it for even 5-10 minutes as a first step towards making a change in your own life. Tell you what, if you'll promise to give it a try, so will I. Let me know how it goes!

Marjie Ruth

sruth1@tampabay.rr.com

marjieruth1@gmail.com

727-244-9011 (c)

Courage, Hope and Support Groups

Occasionally I provide posts here written by Marjie Ruth who hosts a support group for parents of loved ones with ED in Tampa, Florida.  I've left that section of the post here in case anyone living in the area needs a support group.  I know when my loved one was diagnosed and for several years afterwards I did not know where to turn for support.  Tucson has a great support group now and I can put anyone who reads this who lives in this area in touch with the leader.


When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one.   My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."

I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.

I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state.  At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent.  I pray daily that the willingness will kick in.  My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!

Continuing to hope, I know, takes a lot of courage.  Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder.  As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........

Courage is what it takes to stand up and speak; 

courage is also what it takes to sit down and listen. 

~Winston Churchill

Dear Family & Friends of the Eating Disordered;

The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.

From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody. 

As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.

And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.

Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??

Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to  be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?

So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?

Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.

You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.

And what about you? Are you willing to examine your own hopes? Gosh, I hope so.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com