The Patient Patient

dogtimeTwo months had passed.  He was their, “model patient.”

He hadn’t read the patients’ rights literature.  He believed, as I did, that exercising those rights would only bring trouble.

“He’ll be our star,” the psychiatrist and social worker told us, referring to the transition unit they were recommending for him. 

The program on the unit sounded pretty good when they first told us about it.  As with much of what they told us, details were revealed later, after decisions had been made.  We soon learned that a patient normally waits (in the hospital) nine or more months to get in. 

The other part they didn’t tell us was that patients in that particular unit are more deeply under, “the motherly care,” of an institution.  The doctor and her team were as elusive about how long he would stay in the different unit, as they had been about how long it would take to get in.  After speaking with a few professionals, I learned they could keep a patient as long as they deemed necessary.  I understood this meant however long it took to convince the patient that he or she had to take medication, no matter what, every day for the rest of his or her life, aka, compliance.

A patient can say no to medication in a psychiatric hospital, but if the treating psychiatrist believes drugs are necessary, then almost always, medication it is.  

He took the medication.  He was quiet.  He went to classes, most of the time, except when the medication sedated him to the point that he could not stay awake.  He gained almost sixty pounds.  His blood tests changed from normal to abnormal.  He accepted gracefully, “No,” when he asked if he could take a lower dose or change medications.  He came back from the passes they gave him to go out with his family. 

Hospital psychiatrists basically have their own government.  If a patient says no to recommended treatment, the psychiatrist simply goes to the hospital’s court, which occurs weekly and presents his or her case to their judge.  The doctor usually has several other medical team members present; psychologists, social workers and nurses, to aid in the request for forced treatment.  The patient has the right to contest, and is given either a legal advocate or an attorney, but hospital judges almost always give the requesting psychiatrist permission to “treat” the patient.

We chose not to contest the necessary court hearings for a few reasons, the first of which was, that the social worker revealed only pieces of what they were asking for and ultimately, we believed we wouldn’t win.  At least, not until after I could come up with a solid plan to present to them.  A plan that would offer their patient, my son, equal and better “treatment” than what they had in mind for him.  We could only hope they would do the right thing, which was to help us in outpatient planning for treatment in the community.  I worked rather obsessively on creating, “A Plan for Recovery.”

It was amazing really.  All the things the psychiatrist and her colleagues came up with to use against him, some of which were fabricated stories with threads of truth either exaggerated, misinterpreted or grossly over-approximated.

“The county is getting tired of,” the social worker had said the first time we spoke.  I interrupted her.  I couldn’t help myself.

“Which county would that be?” I asked her.  My son had been tossed around in several counties since we turned to psychiatry for help.

“He’s been in the hospital,” and she grandly stated a specific number of times to justify why, “the county was tired.”  Even if her number had been correct, which it wasn’t, it was still relatively low according to what I had learned in NAMI’s Family-to-Family education.  I felt lied to in a way.  Betrayed. 

I’d taken the classes, which are strongly recommended by these same psychiatrists, hospitals and institutions.  What I had learned was the best thing to do for a loved one in a mental health crisis was used against my son.

“That’s not correct information you have,” I told her the next time she made use of the number she grabbed out of thin air.  Instead of looking for the accurate number of times he had been in a hospital, she divided her fictional number by two.  By this time, we were almost out the door, so I let her have her number.

I called a meeting with the psychiatrist and her colleagues to present an outpatient treatment plan, even though this is not how things are usually done in a psychiatric facility.  A family member can most certainly meet with the doctor and/or team of professionals caring for a loved one, but normally, social workers are responsible for outpatient planning.  They refused to help us with outpatient planning because they wanted him to stay.  They said if I wanted to come up with a plan, then they would listen, so I did.

“What if he doesn’t make it at this work-study job?” they asked me during the meeting.  “We’ve been informed that if he can’t make it on time, then he’ll be terminated.”

I reiterated to them that the ACT team worked with him for years and never even got him a job interview.

“This is a work-study job at a meditation retreat center,” I told the group of scrutinizing psychiatric professionals.  “He’ll be outside, learning carpentry, landscaping and building maintenance skills,” I told them.  I didn’t focus on the spiritual teaching that would be offered as part of the work-study job.  I was afraid they would come up with a reason that this wouldn’t be good for their patient. 

“We are afraid he won’t make it,” they kept saying. 

They should have said things like this several years ago, when I was asking for their help. 

They talked as if they expected the world to suddenly be perfect for my son, whom they had repeatedly neglected for many years.  The hospital didn’t have visits from anyone offering jobs in the community, much less directors offering one of their patients a much desired position that would nurture personal and spiritual insight, community involvement and meaningful work.

“He’s been sleeping in groups,” the psychiatrist said.  She was grasping at strings.  Very thin ones, I thought.  She looked over at her patient.  He was sitting at the end of the long table, obviously, without any confidence that he might get released from their toxic care.  In a righteous way the psychiatrist asked him, “How can you function in the real world if you’re falling asleep in our (interesting and stimulating) groups?”  It was more a statement than a question.

He looked around.  He didn’t have an answer.

They were giving him a dosage of medication that I had seen caused him to not be able to walk.  I had seen him staggering, falling against walls, half asleep in the middle of the night, while stumbling to the rest room.  Plus, they were giving it to him in the morning! 

I had asked my mother to be discriminating about what she said during the meeting, because they would use everything against us.  She had been quiet, although, I later learned she hadn’t heard everything, so maybe that’s why, but she responded in defense of her grandson’s rights.

“Maybe he’s bored in those groups,” she said.  “He won’t be bored when he gets out of here.  He can come to my house.  I have everything,” and with that conviction, she had waved her arms in the air, communicating the vastness of what she had to offer compared to the hospital’s unit the doctor was advocating.  “Y’all don’t have any of the things we have,” she added.

Mother looked at me.  I knew she wondered if she had said too much.  I didn’t think so.  My sister chimed in about that time, remarking on the weight he had gained from the medication and not exercising.  “I’ve seen what gaining weight does to people.  They get tired.  Uhh, he’s gained a lot of weight since he came here.  We can see that.”

I was glad they had come to the meeting!

“Which classes is he falling asleep in?” I asked.

The doctor didn’t know.  Her sidekick, the psychologist who wanted every single person he met to know he held a PhD, murmured something under his breath.

“Does he fall asleep in the Yoga class?” I asked, while they were still thinking.

They looked at each other.  The social worker shook her head no.

“He’s never liked lecture classes.  He likes hands on learning and experiential education,” I told them.  “He thrives outdoors,” I added.

I had told the psychiatrist, before the meeting, that I couldn’t understand how she could keep my son when he was not a danger to himself or others.  I hadn’t meant to say that, but when his liver panels continued to come back abnormal and his cholesterol and weight were rising like a flood, I became upset.

“It isn’t even legal.  What you are doing is unethical and illegal,” I told her.

We hadn’t spoken again, until the day of the meeting.  She still didn’t say much to me.  She did look at the photo I brought with me.  It was of my son, smiling, shortly before he was admitted to their hospital.  “He was much happier and healthier,” I told her, which he was.

My son was discharged shortly after the meeting. 

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13 thoughts on “The Patient Patient

  1. Oh, sweet Michelle, I just now read this – so sorry I haven’t been keeping up properly. This is all so very appalling, everything that they put not only your son but you through, too. Your son is so very lucky that you are his mom & a strong warrior woman who has clearly spent many many hours everyday over weeks trying to save him from “the system”. And succeeding!
    My heart breaks for you & your son & all you have been through, and breaks even more for those who don’t have a family that cares enough or is knowledgeable enough to fight for their rights, safety, health & happiness. So many people are just warehoused & forgotten about.
    Congratulations on your success, and many hopes that things will be at least a little bit easier in the coming new year. Keep your chin up!
    Much love & many gentle hugs -
    Ash

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    • Dear Ash,

      Thank you, my friend. Thanks for your concern and friendship, and your encouragement. I admit that it does take some strength to carry on, much of the time, but I’m not too sure I deserve any special recognition, as I believe any parent in my shoes, with love in his or her heart, would do anything and everything in her/his power to help a child (no matter how young or old that child is). And, any success is truly up to my son. All I can do is make suggestions, encourage him, help him find good medical care and try to stay calm when things aren’t going the way I want them to go.

      I also feel sad for the people who do not have any family to help them. They do get warehoused. The key is basically thrown away for some people, and I believe if given the right circumstances, many people who are committed to psychiatric facilities could indeed lead productive lives.

      Thank you again Ash. I still hope to get up to see you. I’ve been thinking of it lately, wishing I could come and be there for some snow. A friend of mine has a camper, and I’m starting to wonder about borrowing it. Then, I could bring Tiny if I needed to. I guess I’m dreaming, but it is possible! I told my mom and she thought I was talking about going up to the mountains where I used to live, and she was scared. I reassured her that you do not live near there, and she said, after a moment, “Maybe you should go.”

      Peace and Joy to you and yours!!!
      With love, Michelle.

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      • Yes, Michelle, maybe you should – following your heart is always the best way to go! After all you have been through over the last few months, a little time to “escape” may be just what you need to put everything in perspective, and let go of some of the anguish & pain. Being outdoors, looking over the mountains, seeing the distant horizons – those things help me a great deal.
        Let’s start working on a plan for getting you up here for a bit, okay? Planning thru facebook would be easiest for me, but I have a gmail account that’s easy for me to access from my new cell – ashwolfdreamer@ gm…
        Is your son in a safe place for you to be away a few days? I hope so, for both your sakes. We’ll work on the details together & see what we can figure out. It’s good for you to have something positive to look forward to, and I look forward to meeting you in person & showing you around this area of the mountains as much as I’m able. We can share stories & compare notes on our lives, loves, losses, and gains! A meeting of kindred spirits, and a girls sleepover!

        Sending you much love, many blessings, gentlest hugs, and a Light in the darkness…
        Ash

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  3. Wow this is a very touching story. It is awful that you had to deal with this. Institutions in my opinion do far more harm than good. It is sad that you had to learn this the hard way.

    I hope that he is doing better now.

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    • mcmillenwrites — hello,

      Thanks for your comment. I agree, they do more harm than good and wish I had had a crisis plan in place, so that perhaps we could have prevented what happened. And yes, he is doing better now, for which I am most grateful.

      Michelle.

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  4. Those doctors are SO wrong — sounds like they haven’t even tried to get to know your son! At first, it did sound good for your son. But now the treatment sounds like a nightmare.
    I hope you get the meds lowered and he starts with the landscaping company. I will keep you and your son in my heart. Wishing you all the best. I hope thag 2012 is a special, wonderful, whimsical year for you and a year of work outside, weight loss and med change for your son!
    Sending good thoughts and lots of (((((hugs)))))

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    • Hi Phylor,

      Yes, this time, the doctors were wrong. Personally, I don’t think they get to know patients diagnosed with schizophrenia. They treat them all the same.

      Schizophrenia is a difficult condition to treat, no doubt, but I am sick of professional lies from psychiatrists and social workers. I’ve listened to them for eight years and honestly, I can’t say they have helped my son.

      There must be a better way to treat this condition other than with the toxic drugs that evidence has shown causes more problems than the illness does. I hope I live long enough to see things change in psychiatry.

      Thanks for your encouraging and hopeful wishes. My son has lost almost 15lbs and hopefully, his next blood lab will be normal. He delayed the work-study job and instead, was accepted in a recovery program. He did well and I’m proud of him. He was offered a very nice job just yesterday. If things work out, he could learn a trade with a wonderful friend of ours.

      I don’t have a cure, or the perfect solution, but I will carry on in search for better and humane treatment.

      The notion of a better and “whimsical” year in 2012 is hopeful. Thanks Phylor!

      My very best wishes,
      Michelle.

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    • Hi Barbara, Yes, it is sad, although writing it comes more from anger. But then, I just realized, sadness turns to anger in me.

      It’s sad that my son or anyone must face this kind of treatment when it is not necessary. I hope that more and more patients and family members start thinking outside the box, remembering that they (we) do have rights and, that the new evidence about psychiatric medications will be enough to change this totally screwed up mental healthcare system.

      Hoping things are going smoothly for you (and yours!),
      big hugs, Michelle.

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  5. Hi Dreamwalker,

    Yes, it was all quite appalling. He is out now. (I think you read my post before I finished as I accidentally clicked publish instead of save draft). We are on a new path, and definitely trying to steer clear as much as we can from the public mental healthcare system, but it is too bad this is the way it is. There was so much wrong about his stay in that hospital. I know it’s the holiday, so I must write too about something cheerful, I think, like the decorations or lights and the time we have with my son. It’s a hard road choosing treatment that works for a neurological condition (although it is more than that, cognitive issues are the hardest to treat). I hope with his continued use of holistic treatment, he will get better and better!

    Thank you for reading my posts, as always. Your comments are dear to my heart. And so are you. Take good care, with hugs and love, Michelle.

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    • Michelle, yes It seemed I read before its completion, And I am pleased here that I you have him away from this systems grip… I know you said about things before, but as its been a while I didnt know what had happened since. So Im very happy about your concluding words to this post..
      Love and Blessings my lovely friend. xxx

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  6. This is appalling Michelle.. in fact that social worker should be ashamed of herself. They are not looking at all at the Best interests of the Patient here at all.. They are following rules within their system.. No patient is the same..And HOW do they know it will not work. When they wont even let him give it a try… Medication puts on weight like you say and affects the liver functions.. If his liver comes back as abnormal then surely they are reviewing his medication..
    I am no Dr.. But I know enough working within a support Team to know that this is VERY WRONG..
    You have my whole-hearted thoughts and prayers Michelle.. And I hope that somehow your Son can get out of this MAD Loop the system has placed him in..

    All of this is doing him and you no good … arrgh the only way I can help Michelle is to send out my thoughts to you all… And ask the Universe to work it out for you all.. Don’t lose faith my friend… xxx
    Your friend..Sue ~Dreamwalker

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