Sunday, August 11, 2013


I am most grateful to each and every one of you for reading and for commenting on the last bunch of posts.  Clearly, patient engaged care is something that evokes strong feelings in me.  Apparently, I'm not alone in my thinking.  Cancer?  I could do it for myself, by myself.  Or not.  But, an option exists.

Although fatigue and, in general feeling like shit, might make self advocacy a difficult task.  Difficult does not mean impossible.  For some, impossible does mean impossible.  This is a big problem.

Who engages on behalf of those who are incapable?  Those whose brains are misfiring in ways that preclude them from self-advocating, those living with (and in many cases under the stigma of) a debilitating mental illness.

It was the end of June.  Mrs Mom and I were driving from one hospital where no care would be provided, to a facility that actually has programs to treat those afflicted with mental illness.  When we arrived, it was late in the afternoon.  It was also a Friday.  Take note.  That's an important tidbit.

We sat in a hallway while the intake department did their thing.  One very big difference?  Mrs Mom wasn't asked to sign anything.  No doctor ordered an involuntary hold.  This was a voluntary self admission, signed by a young adult.

By the time we got to the unit, it was after 6PM.  We were able to stay for a little while, we got to tour the floor and see the other patients.  This was a far different environment.  It just felt, for lack of a better word, safer.

The problem with this scenario?  Although this facility was a hospital where there would be therapy and med management, no one works on Saturday and Sunday.  It's the B team.  B for Babysitters.  Also, by mid Saturday, it became clear that this was not the proper setting.  It was a unit that focused on a specific set of issues.  A broader spectrum of care was necessary.

Monday morning, the staff begins rounds.  And again, stupidity.  The doctor and the therapists visit.  Three nights and three mornings had passed.  The new patient wasn't really that new.  "I will be leaving later this afternoon,"  which prompted more unacceptable behavior.  Attitude.... a bit of bully pulpit bullshit....  directed at a person who is mentally quite fragile.

The doctor admonished, "You signed yourself in for 72 hours, you won't even be here for 8 hours.  You must stay."

"No, I'VE been here for 72 hours.  No one else was here to do anything aside from provide me with meals and medication.  That's not my fault."

They went round and round doing this dance in the hospital. Mrs. Mom quickly realized the staff was in full court press mode, insisting they needed time to do a proper evaluation.  Repeatedly being told, "Saturday and Sunday don't count," the pressure was on.  Phone calls were flying between my friend and her kid, then my friend and me, then my friend and the social worker.  Ultimately, I found myself at my friend's home and soon, I was part of the phone chain.

There was a difference.  We already had an idea of what type of care would be appropriate from the first emergency room psychiatrist.  This facility was not capable of administering proper care in that unit.  However, there was another unit at the same hospital, on the same grounds, where additional treatment could be provided.  Care could have been supplemented using the present inpatient team and adding treatment, at an adjacent building, in the same facility, on the same campus.  I believe we call this personalized medicine.  To be honest, I can't think of any medical setting where personalized, customized, tailored care would be more important.

My friend's kitchen was turned into command central.  The social worker was trying to contact her own hospital, while my friend and I were contacting other facilities. Her landline was ringing and both of our cell phones were in use.   Somewhat annoyed, I grabbed the landline.  I recall thinking that it better be the social worker telling me she had this whole thing arranged.

Instead, "This is John.  I'm the care advocate from the health insurance company calling to check in.  Is there anything I can do to help?"  My jaw dropped.  The insurance company called without anyone initiating a call to their office?  I explained what was happening and how we were trying to arrange appropriate care.  I told him the social worker at the hospital couldn't get an answer from a department on her own campus.

Hell, it was a beautiful day.  She could have gone out for a three minute stroll and put herself in someone's face.  Instead, voice mails were left by her, by my friend, and by me.  One call was returned.  To me.  Six hours after it was placed.  We were already in the car on the way to the hospital.  A discharge was essential.  You see, even though the doctors attempted to employ bully tactics, John, who would become a trusted ally over the course of the next three weeks explained there were only 25 more mental health treatment days remaining.  We could ill afford to burn through another day of no treatment over what amounted to clerical inefficiencies.

Admission was refused to a facility close to home.  Ineligible.  No actual suicide attempt was made.  "Are there cut marks?"  ARE you kidding???  Dozens of calls over several hours to at least six places and we were no closer to any sort of resolution.  What began on Wednesday morning in the emergency room ended on Monday evening, the three of us back at my friend's house.  Armed with medication and no plan.

The following morning, the fun resumed.  It was like Groundhog Day.  Easily, there were notes and pads strewn across three or four rooms in her home.  All dead ends.  Every facility responded to our inquiries with some form of "We need to talk to the social worker."  Really???  My friend knows better than the social worker what kind of behavior she had been observing in the months leading up to this mess.  How about you talk to HER and we'll have the hospitals send you all the clinicals?  "No, you can't just come here off the street.  You have to be referred in by a social worker."

This stupidity continued for weeks.  Many weeks.  There were issues with insurance.  The care advocate got on the phone with the places that claimed there were insurance problems to cut through the red tape.  Except HE COULDN'T.  Go back and read that again.  Slowly.  The care advocate from the insurance company was incapable of cutting through the red tape.

The discharging hospital must get the "pre-approval" and the social workers from both of the hospitals were done with this case.  "I can't do anything after discharge."  This went on from 9AM until 5PM every day.  From July 1st through July 12th, nine days of calls by 2 of us.  Her kid remained nearby for HIPAA authorization or to leave messages for the local psychiatrist to fax records at the request of some of the places we contacted.

By close of business on Friday, July 12th, we were no closer to treatment than we were on June 26th when this began.  I am a seasoned advocate.  I was confounded at every single turn.  Two of us were working diligently for over two weeks and there came a point when I heard this small voice, "I'll just go back the to emergency room and tell them I'm going to hurt myself."

What if that were true?  Or worse, what if violence reared its ugly head. It's mental illness.  It's completely unpredictable.  It seemed like all was relatively calm but who knows what might trigger an episode that could push a mentally compromised person over the edge.  Certainly, there was enough time.  Had anything of some sort of tragic nature happened, either self harm or harm to others, I have to believe the masses would be passing judgement.

"How could the parents not have seen this coming?"

And I'm here to tell you, She Saw.  I Saw.  She was doing everything in her power to advocate on behalf of someone with a known mental illness.  An involuntary psychiatric hold?  That's pretty serious shit and damn near never happens.  We made sure each and every facility we contacted was aware of the involuntary admission in the psychiatric unit.  

She had help from me.  We had the assistance of someone from the health insurance company trying to provide us with a list of additional places to call.  When someone on the other end of a phone said insurance, our advocate was on the phone within moments.  The once or twice that he was not at his desk to answer the phone, our voice mails were returned in less than an hour.  There were dozens of calls to him.  He jumped through hoops.  Yes, he did.  And he was just as confounded as we were.  Doors slammed; "You aren't the hospital social worker" was the running theme.

On Friday, July 12, as it approached 4PM, it became clear we would be hand wringing for yet another break in the action.  We spent the weekend investigating every place we could find on the east coast.  By Sunday evening, we had compiled a list of about 8 possibilities.  Monday morning, the phone calls would begin anew.

Bottom line.  Between Monday and Tuesday all 8 possibilities were contacted.  Some returned calls, some still haven't called back.  After evaluating the very limited options, a choice was made.  The program is about 75 miles away, 90 minute drive time.  The care is comprehensive.  On one team, in one building, using office space that is side by side, includes a psychiatrist, therapists, groups, behavioral therapy, life coaching and there is a residence for those who do not live close enough to drive there every day.

It is an "out of network" program which can start me on another path of ranting.  If someone hadn't stepped up and handed over what amounts to a blank check, we would likely still be on the phones and what has been repeatedly described as a psychosis would still be untreated but for medications prescribed by clinicians that know little about what led us to this point.

What happens to those for whom there is no financial assistance?  Disparity among those with mental illness has to be one of the cruelest cuts of all.  Help is there for the haves.  And for the have nots, stabilized and put on the street to fend for themselves.  That's a disgrace.  

There is a long road ahead.  The treatment team has been in contact with Mrs Mom a number of times.  No diagnosis was made but it is rather serious.  They are being very thorough and very thoughtful before they affix a label.  From what I'm hearing, they've contacted her to fill in the blanks, to ask about specific behaviors, to learn about family history.  They've been somewhat generic in their statements, walking the fine line to make sure there are no HIPAA violations but sharing enough that my friend realizes she is on a long road.  And I'm on that road with her.

As I read the materials and do what I do, scour the research, it's a bit odd.  This blog began because my brain was injured. This, too, is a brain injury.  If we need to go on a renaming campaign, mental illness is the one to pick.  An injured brain just sounds like it would be less stigmatized.  

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  1. I like your idea for a change in terminology. Mental illness does have strong negative connotations.

    So sorry for all the hoops and closed doors. It sounds to me like the system itself could use some reorganizing in a BIG way. Imagine, you need to get to the point of self-harm before being taken into care.

    Be well Anne Marie, you're an amazing support. ~Catherine

    1. You are on my mind, Catherine... Sending tons of love and hugs...


  2. I disagree with eliminating the term "mental illness." That term has been stigmatized, even by neurologists, with no real understanding of the suffering caused . The suffering of patients is invalidated in a complete denial of the electro-chemical nature of the brain. as rating as any kind of emergency or requiring immediate intervention. Mental illness has remained marginalized in the medical community because it doesn't bleed, or show up on tests, or respond immediately to medication. There is no quick payoff, so they believe we can always wait. Even brain injury takes too long to treat to be sexy.

    I have a wonderful social worker/counselor and he fights for me every day.

    I'm sorry I can't stand beside you a you guys fight your way through it. Oceans of love ...


    1. Thank you, my friend... thank you so much....

      You are so right and I've gotten quite an education-rapidly-- and the learning curve was a bit steep.

      Any suffering that is marginalized or invalidated is a disgrace. Those of us who are on the outside, watching the pain, need to do better. Need to understand better.

      I've read so much and one of many things that sticks in my head "the behavior isn't the illness, it's a symptom of the real illness that exists inside the brain."

      Much work to do.... and your love puts you right beside me, Acacia...


  3. Your description of the Saturday and Sunday phenomenon also occurs over holiday weekends or weeks. I've been at the hospital with family where the B team allowed so much liquid to pile up that it caused a heart attack in one, another time staff weren't monitoring O2 levels and somehow missed the fact that that individual's stomach was in his lung cavity. It is horrible. And even worse in the scenario that you describe, where family cannot be present so there is no one available to advocate and the patient's viewpoint is called into question. Horrible, frustrating, disturbing, have described the situation well. I'm so sorry that you are going through this!

    1. Kathleen...

      Thank you so much for sharing. I can see how nothing happens during a holiday week, too. July 4th was on Thursday. We were on the phones Monday, Tuesday and with a real sense of urgency on Wednesday. The insurance advocate made sure to let us know he WOULD BE working on Friday and he called first thing Friday morning for an update.

      What a mess.... And still... no diagnosis.... still trying to get some of the disordered thinking straightened out so there can be a bit of forward motion....



  4. There was a heartbreaking book written not too long ago: A review from a reader at Amazon is below along with the title "Crazy: A Father's Search Through America's Mental Health Madness" I am posting this just for what it is worth. Love You, AM.

    Crazy: A Father's Search Through America's Mental Health Madness (Hardcover)
    For anyone who has either "been there" himself or has watched a loved one descend into madness, this book will seem heartbreakingly familiar. But I fear that only the people who know and understand what Pete Earley and his son, Mike, have been through will buy and read this book. And it's not those people who need to understand just how "crazy" the treatment of the mentally ill in our country is in the 21st century. Until you've seen it from the inside, most people will have no idea that a parent has no power to help a sick child who happens to be 19 years old. That the person who is "crazy" is given the responsibility of making decisions about his care when he is as divorced from reality as he has ever been. That the only way of getting any sort of treatment is to first assault someone or try to kill onesself or another person. The average person has no idea of the hopeless, helpless position someone with a mental illness and their family are put in by the very people who we hope will HELP. As Mr. Earley points out in the book, who among us, particularly those in the medical profession, would walk by a person in pain, dying of cancer, without attempting to help? Who would send that person to jail to be locked up with murderers and rapists instead of to a hospital, where he would be given the medical treatment he needed? Who would suggest that no help could be given to him until he tried to kill himself or someone else? This is what happens to someone's son, daughter, mother, husband every day in this country. Mr. Earley has come to understand mental illness and the horrible state of care and treatment in the United States in a very personal and tragic way, as many, many of us have. He has graciously invited us to travel with him as he tries to understand how a First World country like ours could treat a beloved son as if he were a criminal, just because mental illness struck unexpectedly. mental illness is an uninvited guest. It is the cruelest of diseases. And it could happen to your son or daughter. It's then that you will completely understand where Pete Earley and Mike have been and are. Where so many hundreds of thousands of families are. Alone, without help from the medical profession, the legislatures, the law.

    1. Carm...

      I love you tons. And tons more. The reader review is chilling. Those words capture the frustration I have watched over the past two months. The system is broken and it's a disgrace. I don't have people walking over me as if I were yesterday's trash and yet that is what I've witnessed. "Who would walk by a person in pain, dying of cancer, without attempting to help?"


      I miss you, mama...



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