"Meet me in the emergency room!"
I dropped the phone and ran to my car. My friend was frantic. She only uttered six words but friends know frantic when they hear it. As I began driving, I realized I had no idea what ER and I became frantic. There are no less than five hospitals within close range of my home and hers.
Fortunately, she picked up her phone on my first attempt to contact her. She told me where she was and that, my friends, is what happened during the latter part of June. Since then and through today, this episode is ongoing and it has derailed and discombobulated me.
She was in the emergency room with her young adult child. She had reason to believe there might be an issue with self harm. I was with her for an entire day as teams of doctors evaluated the situation and bounced between interviewing the young person and speaking to her. I never left her side. I watched the torment. I felt it. That's the way it is with friends. We feel each other's pain, we read each other's minds.
After several hours, two doctors had already determined it would be prudent to admit this young person and I watched as the tears streamed down her face when the head psychiatrist held out a pen. Her signature would allow her to maintain some semblance of control even though the doctors were now in control of what would soon be an involuntary hold in a psychiatric ward. The first untruth, half truth, bald faced lie, misunderstanding..... pick any, doesn't matter.... just as much as her signature didn't matter, either.
The Brain. My blogging gig and my social media presence has been about my own brain. Today, I have an entirely new appreciation for how much we do NOT know about what causes a brain to cease functioning in a way that is "normal." Whether it is messed with because of a cancer diagnosis and the aftermath of treatment or it is physically harmed causing a traumatic brain injury or it experiences some sort of psychotic episode, we know very little. What we do know? Or what I have learned as I've been on this path with her, the mental health system in this country is draconian at best. Barbaric may be a better word to describe some of what has occurred at certain points over these past several weeks.
They were moments away from what would have been an ugly admission. The blue gloves were donned by the aides guarding the door. The gurney with the straps was just on the other side of the wall. They were ready to forcibly medicate when one of the nurses was able to calm the situation. "Please, they are bringing down a wheelchair now. Can you just try to sit quietly and let them wheel you upstairs?" Maybe it was her voice or maybe there was a sense that this was going to turn ugly but the gloves were removed, the gurney disappeared. I watched my friend blink back tears of relief as I finally exhaled.
We were able to accompany the aides right up to the locked doors. As the wheelchair was pushed through the doors, she was instructed to return with street clothes and some toiletries. It was now eight hours after I arrived and we were on the run. We had to be back before visiting hours were over or she would not be permitted on the floor. There are no bending of the rules in a psychiatric unit. "You have to be back here before 8PM or no one will answer the bell." She seemed fine. Running on adrenalin? Perhaps. I was terrified.
The real fun began the next morning and that's when I began to realize how disgracefully we treat those among us who are in the most need of compassionate care. The doctor in the emergency room explained there would be NO TREATMENT and the goal would be to immediately find a suitable facility. He tossed out the names of a couple of places. He was an excellent doctor.
The next morning, she contacted the hospital to find out what they were doing to make arrangements to move her child. Again, a frantic phone call. "They aren't doing anything. They say there will be no discharge, no transfer." I jumped into advocate mode. And I jumped into my car. Ten minutes later, I was at her door. "What do you mean they aren't doing anything? The doctor made it clear the plan was to set up treatment in a suitable facility."
She called the hospital and the attending psychiatrist got on the phone. "Your child is extremely agitated and won't be going anywhere any time soon." I blinked hard and I know I was stunned at those words. Ultimately, she handed me the phone. "Yes, Doctor, but don't you think agitation is a completely normal reaction. A person has been stripped of their rights, ALL of their rights. It would be abnormal if there wasn't some agitation, wouldn't you agree?"
And then, it got ugly. Bearing in mind there is a child locked behind a door and a helpless mother who happens to be someone I love dearly, I tempered my tone. I remained respectful. I explained that the admitting psychiatrist laid out a plan. Under their watchful eye, the patient would be safe until appropriate hospital arrangements were made. "Who is taking care of that, arranging a transfer?" Suddenly, I find myself being spoken to in a dismissive tone, being spoken AT, being told this was her gig and whatever was said in the emergency room was of no interest to her. "The ED doesn't direct us as to what to do once a patient is admitted."
OH really??? "Dr. Bitch, Mrs. Mom was told her child would be moved today and it would be arranged by you....." I didn't get to finish my sentence before I heard, "I just told you, the doctors in the emergency department are not in charge anymore, I AM." It started to sound a little like Cuckoo's Nest and I felt like I had Nurse Ratchet on the other end of the phone. Except, it isn't the 60's or 70's and I know just enough about patient rights to open my big mouth.
Clearly, I wasn't going to get anywhere with this woman. "Dr. Bitch, can you provide me with the name of the department within the hospital where I can obtain a patient advocate for my friend's child?" And Dr. Bitch informed me there was no such department within the hospital. I rephrased. "How can I contact the hospital ethics department?" And again, "I don't know what you are trying to do." I replied, "My friend's child needs an advocate. Mrs. Mom no longer has any say in what is happening. She was given inaccurate information in your emergency room. I was a witness to that. Either someone is going to follow through in accordance with the plans laid out in the ER....." And again, "Just call back and speak to the social worker." Click.
I stared at the phone and I stared at my friend. I began to get enraged, thinking to myself, "Oh No You Didn't" when the phone rang. "This is Nurse (not) Ratchet. Can I help with something?" I asked her to please give me the name of the person handling complaints and then asked who would be facilitating a move to a center where proper care might be administered. She gave me the phone number for the ethics/advocate area and the name and extension of the social worker. I got ethics on the phone, explained what had happened and simply stated that I expected the hospital to do exactly what they told Mrs. Mom, that I couldn't understand what was going on, that all areas should be working from the same rule book. She took information and promised to have someone call back. Can you guess? Right. No return call. Ever.
The social worker was a completely different story. She explained that she would be the one making the discharge decision. A new ass to kiss. One step deeper into this twisted labyrinth that was beginning to remind me of my worst nightmares. However, the social worker must have already gotten a heads up from someone because she was quite accommodating. It took the entire day to pin down a few options and arrangements weren't finalized until the following morning. Forty eight hours after I first stepped into that hospital, I was exiting with my friend, her child and a set of directions to drive to the new facility......
Forty eight frustrating hours filled with fear. She was treated with such disregard it was appalling. She was trying to advocate for her kid and instead, I had to advocate for her.
That's just the beginning. Two days out of the last 35 or so and I will finish the story for anyone who might be interested in the next few blog posts.
I am disgusted with what I've seen. This system is so broken I don't know what it will take to fix it. For starters, there is a new badge in the left margin of this blog. I am standing up for mental health and I'm speaking out against the stigma attached to those whose brains are not well.
I shudder to think that there are people brought into those units who have NO ONE on the outside to push for treatment. I shudder to think that there are people in those units who DO have loved ones on the outside that can't navigate the ropes because they are too emotionally attached to the situation and won't reach out to a friend because they are hiding a mental illness.
The stigma. Why is that? If a bone were broken, it would be placed in a cast. If an infection invaded the blood stream, an antibiotic would be prescribed. If a heart had a faulty valve, it would be replaced. Dialysis would be ordered if the kidneys weren't doing their job. The brain misfires and what? The person whose brain isn't functioning properly is ostracized, ridiculed, treated in ways that are so deplorable it sickens me.
I've seen too much since the latter part of June to shut my mouth. I don't know where this might take me, but an illness in the brain is just that, an ILLNESS. My brain is not right. It was damaged. Such is the case with my friend's kid. An ill brain. One that is being treated for an illness the doctors are still trying to diagnose.
And in the meantime, we have people like Dr. PHIL insulting the insane. Perpetrating the stigma. Words. They matter. Someone who has suffered a break from reality, a loss of sanity, a potentially life altering debilitating illness .... and he states they "suck on rocks and bark at the moon."
Oh Yes, He DID. He should be ashamed, he should be ostracized, he should be the one sucking it.. and IT would not be a rock, either. The rocks are in his head. Where his brain should be. THIS is not okay. Read what a parent of a mentally ill child had to say when he heard that. The parent was Phil Earley. He penned a book: Crazy, A Father's Search Through America's Mental Health Madness. Mr. Earley wrote the column that appeared in USA Today. He calls his son a hero.
I concur.
(written with Mrs. Mom's permission and a promise to protect the privacy of her child)
I often wonder what our "modern medicine" would do with St. Francis, St. Theresa, or Joan of Arc if they were alive today. They heard the voice of God, but would probably be shunned, drugged, and who knows what else. Everyone deserves to be treated with dignity and love. You clearly have a calling in the world of advocacy. Thank you, AM. The world is a better place because of you.
ReplyDeleteThank you, Heather.
DeleteThis is why I've been silent here for weeks. I've read all of the comments left and I usually reply but while I was in crisis mode trying to be of some help, that was the priority.
xoxo
A 911 call took my 88 year old Mother to the hospital with what was later determined to be a kidney stone. She bled for 6 days ,receiving a blood transfusion every other day before they thought to test for a clotting factor. She was there for 3 weeks . They gave her Composine for "nausea" which doped her into near coma . She had a 24hour "sitter" but no one checked to see if she ate "BRAT = stale bread,rice and banana" She wasted from 120 pounds to 90 pounds and the Doctor assured us she could live on her IV. I snuck in shrimp and the Doctor screamed that I could no give her anything worse for her high clorlesterol . I informed the Doctor that I took pictures of her wasting away EVERY DAY. I reviewed her medications as POA and told them that 3 pages of individual vitamin pills would make HER nauseaous . I had most of the list removed from her daily cupful and removed the Composine which I pointed out is an ANTIPSYCHOTIC and entirely inappropriate for Mother's treatment. She really received no treatment for the kidney stone except for repeated MRI/CAT scans . She had to stay an extra week for the bedsore.
DeleteShe went in reading and discussing the Wall Street Journal and libor rates, taking care of herself in the bathroom. AND LEFT unable to ever walk again because of being flat for almost 4 weeks and with the mind of a child ,-- alzheimers triggered by repeated anesthesia and drugs.
Her Affirmative Action Doctor tells me that Jesus wanted Obama to be President.
I wished upon all concerned that they live to be 101 and have the same care they provided.
They smiled and nodded, so ignorant they did not recognize a curse.
Mother died last week. Almost a year to the day of her hospital admittance. She never recovered from their treatment.
While your concern is about mental illness, it should be a concern for anyone that becomes helpless .
Oh boy. This is a 'snake pit'. Please give your friend a hug for me. Also, direct her to NAMI,(National Alliance on Mental Illness) they have local chapters everywhere, and can provide resources and limited support. There obviously is urgency here, mostly because the rules change again for the worse once the person involved turn 18. I will hold your friend, her loved ones, and all people going through this maze in my thoughts.
ReplyDelete--AL in the Midwest
Yes, NAMI...
DeleteThey have wonderful resources and are quite helpful. We learned that quite quickly!
Yes, I will give her a hug... and hand her a glass of wine, too.
Thank you so much for your kind thoughts....
Been there, done that. I once sat myself on the floor and made no small amount of noise in the psych ward of a VA hospital in a desperate attempt to have my father discharged after a social worker's ill choice of words precipitated a suicide attempt. (He was there to have his prostate removed because he had prostate cancer. Almost immediately after the surgery, the do-gooder came by and said, "Don't worry, Mr. Kirk. We don't think your wife will leave you." It had never occurred to him that my mother might leave him, but he perseverated on this novel idea, considered that she could leave him and then started to hack at his wrists with a penknife.) I also had one other experience involving a different family member.
ReplyDeleteMy advice to anyone who goes through this is to say "lawyer" and to keep saying "lawyer" until you get action. (If you have a friend in the news media, that will also work.) It may be necessary to actually produce a lawyer at some point, but in the first incident, I didn't have to--something of a miracle when you consider that civil law doesn't exactly apply inside a VA hospital. (In the second incident, I was still married to my ex-husband-the-lawyer, and he came along as an observer.)
Never go unarmed when dealing with mental health professionals. All too many of them are (this one's for you, Dr. Phil) barking mad.
Rhonda..
DeleteThat's so funny.. not haha funny but I was editing as I was writing. I DID tell them I would be showing up with an attorney AND THE MEDIA and there would a very unwanted scene in their lobby if they didn't start moving.... I wound up taking that out as it felt like I was "overdramatizing" things but yes, I DID do just that!!!
It isn't "overdramatizing" if it's the only thing that works...and it really is the only thing that works. The overall God-complex in the mental health field is appalling. Good on you for working your way around it all.
DeleteHi Anne Marie, I had a similar experience with my niece, who was 14 at the time. It was easier because she was still a minor so her mom (my sister) was able to be in charge. Mental illness is so misunderstood and I agree that there needs to be MASSIVE change! I'm glad you brought this to the limelight!
ReplyDeleteThanks, Vicki..
DeleteAnd yes... MASSIVE change. I am still trying to process what went on after that first little chapter closed.... It did get worse before it got better....
Part two to follow....
Hugs to you...
Glad you're speaking out about this. I've intimately known more than one mentally ill person. I could go on and on about this issue, and not just from the point of view of treating facilities, but about the masses who think mental illness is funny. (Yes, shut up, Dr. Phil!) Anyone who has ever loved a mentally ill individual knows it's anything but funny. It's deeply heartbreaking. So much suffering for the afflicted individuals and all those who love them. Thanks for being an advocate, AnneMarie. You're terrific.
ReplyDeleteOh Annemarie... I am so sorry this has happened to your friend, her adult child, and you. :-(
ReplyDeleteYou know me... I'm the resident "disgruntled retired RN" who thinks the whole medical care system & treatment in our country is broken... not just the mental health care system. *sigh* I could go on... and on... and on... and on about it. And don't get me started on cancer... and pollution... and toxins in the water, air, food. Chemicals... entering people's bodies through various ways. Chemicals... that have *absolutely no business being inside someone*... and yet are holier-than-thou sanctioned by the FDA, AMA, and all the other "A"s.
This child has a chemical imbalance alright... and I would be willing to venture a guess that it's a chemical from the "outside" that is going to the "inside" of this child's brain & causing a disruption. But will you ever find a governmental agency or research facility to admit that? Hell no. Why? Can you imagine the lawsuits? There wouldn't be enough money in the United States Treasury to cover all the payouts.
I'm currently fighting (like hell) a cause in my own area... begging, pleading... with our governor to stop BP from dumping record levels of mercury into Lake Michigan. Record levels! And one of the things that mercury toxicity does is... it damages the brain.
Not that BP cares about that.
I wish peace & answers for your friend's adult child... and strength for the child's mother... and you.
God bless you~ Andrea
on behalf of all parents struggling with the never-ending battles of a child with mental illness, I say, "just shut the FUCK up, PHIL". no "doctor" about it. you may end up being the poster boy for why this country has such a screwed up, broken, miserable record of ineffective care for those suffering from mental illness, as well as their families. as to you own shameful and outrageous insensitivity, I'll ask you, "how's that WORKIN' for ya, phil?".
ReplyDeleteKaren Sutherland
AM, all I can say is you are A-MAZ-ING!!! And can I also say that if *YOU* had this much trouble getting to the root of this very-real problem, we cannot imagine how difficult, disorienting, disgusting it is mentally, emotionally, physically for not only the poor patients who are on "lock down" but for their families who likely do not know how to work the system to get proper answers the way you do. OY. I am heading to Twitter now to get the word out.
ReplyDeleteWe have to be our own advocates; this much we've learned from having cancer. Advocacy is like paying it forward. Each day offers an opportunity to advocate for someone in some small (and sometimes some very LARGE) ways, be it for ourselves or someone we love but also sometimes for someone we don't even know. I can't even begin to tell you how important my being my mother's advocate has been. Things slip through the cracks at each and every doctor's visit... and she is healthy now! It's crazy.
Thank you for the gift of YOU, AM.
My now grown and healthy daughter spent much of her adolescence in and out of psychiatric placements. There were many good, caring people doing their best but oh yes, were there some horror stories. Like age 12, her hands were cuffed and her feet were shackled because, though at this point she was calm and cooperative, she had earlier that evening taken some sleeping pills.
ReplyDeleteAnother hospital refused to let us see her for weeks, and they refused to let her see a therapist (She had to earn the privilege first) I played along with them for a while, but when I put my foot down and said,"This has gone on long enough; I have to be able to at least talk to my daughter," I was threatened. The social worker's exact words were 'You know, if you don't cooperate with us, we could have your daughter involuntarily committed." Did that stop me from speaking up? Noooo. You are right, you do have to be an advocate every step of they way.