The Wrongs of Psychiatric Care – Part 1 of 2
A Blind Date With My Husband
By – Sheri De Grom
How I’d wanted to go on a date night with my husband. I just hadn’t thought it would turn out to be a blind date. After all, we’d just marked our nineteenth wedding anniversary.
My husband, Tom, had been in the hospital for two weeks of what would turn into an additional five month stay. My blog, In The Name of Modern Medicine describes the trauma of Tom losing his entire memory of fifty-five years when electroconvulsive shock therapy (ECT) was administrated to him in 2000. You may read the aforementioned blog here.
The ECT was a physical assault on both Tom’s brain and spirit. The anguish remains immeasurable today, twelve years after the incident.
Years of speech, physical, and cognitive therapy in a brain injury unit—both inpatient and out—helped Tom regain a few living skills.
This particular episode started in 2004 when we started seeing alarming physical symptoms emerge that indicated an assault was in full force on Tom’s body. Physicians had told me that the disease of bipolar disorder shortened an individual’s lifespan an average of fourteen years and this was if no medication errors were made. New symptoms were escalating and in mid-2004 he was diagnosed with Parkinson’s disease. As with bipolar disorder, there’s no specific test that diagnoses Parkinson’s. A physician assesses the patient using a set of symptoms criteria for the disease. Tom was diagnosed and another round of medications was added to his already over-medicated body.
I watched desperately as his body continued deteriorating. He wouldn’t leave the house. He couldn’t hold a book or lift a coffee cup to his mouth without spilling most of it. He shook so violently, our daily lives were turned upside down—again. This once oh so proper—gentleman ate nothing but bite-sized finger foods. He lived in terror of making a mess. My husband and his handsome military bearing, our thought- provoking conversations, and the spontaneity of our lives were gone, again. What little we’d gained with his rehabilitation after the ECT, vanished into thin air (or perhaps I should say, into the addition of more and more pharmaceuticals).
I’m convinced our new little rescue shih tzu, Scooter, kept Tom alive in those dark days when his body was falling apart and we were clutching at thin air. This was new healthcare territory for us to explore. Our Teddy was gone but Scooter came from an abusive home and, with his heightened sensibilities, he knew Tom was his responsibility. Day and night Scooter was with Tom. He never left him unattended.
Scooter’s own story was one of survival in an unforgivable environment as a puppy. He’d been beaten repeatedly by a woman with a broom handle and left to freeze in the bitter cold of the Ozark Mountains of Arkansas.
After he was rescued, it was originally believed Scooter could never be rehabilitated. His first foster home was with an experienced rescue handler. She worked with Scooter for months but couldn’t get him to stop biting. She thought he’d never be placed in a permanent home and was planning to have Scooter euthanized.
Enter Scooter’s guardian angel. The most amazing woman stepped in and said, “No, we will not put Scooter down. I will socialize him, teach him not to bite and, if necessary, I’ll keep him as one of my own. She’d already reached her personal limit for the number of rescues she could have at one time, but I’ve never met another person more dedicated to rescuing dogs, primarily shih tzus.
Mary Spurlock—how I wish every dog lover could meet her—kept Scooter and worked with him for well over two years before she considered him ready for permanent placement.
Adopting a dog through Mary was a fun and insane process. Tom and I have laughed about it often. We had three home visits before laying eyes on Scooter.
Finally the day arrived when Mary brought Scooter to our home on the lake and he ran straight into Tom’s arms as if to say, “Where have you been all my life?” Hugs and licks and a game of fetch sealed the deal. Scooter was home.
Because Tom’s illness had progressed at such a rapid rate, Tom was in and out of the mountain hospital frequently during 2004.
Tom escalated to the point where he couldn’t walk without falling down and in February of 2005 I admitted him to the hospital once again.
Scooter mourned his missing master and stood sentry inside the front door. I’d never seen such a sad little dog. He didn’t want to play, eat, or go for a walk. He only wanted Tom. After two days, I cuddled him in an afghan Tom frequently used while napping and gently rocked our little dog as one might a baby until finally Scooter’s body relaxed and he went to sleep.
The following morning at the hospital I met with Tom’s diagnostic team and they told me they thought Tom was malingering. I came apart at the seams. Furious, I shouted, “How do you malinger when you can’t maintain control of your muscle groups, cannot form complete sentences, and cannot walk without falling down? What about the forty pounds he’s lost in the last six weeks and the night terrors that fill what little sleep he gets?” I was surprised fire wasn’t coming out of my nose and ears.
Because Tom had the diagnosis of bipolar disorder, he’d been admitted to the behavioral health unit of the hospital, and they are notorious for never addressing patients’ physical ailments. I demanded testing for Tom’s various conditions and met with complete resistance by the medical staff.
Taking matters into my own hands was nothing new for me when it came to Tom’s medical care. In 2003, we’d moved to the Arkansas Ozarks (definitely a topic for another blog) after living in many never-to-be-forgotten places. I knew Tom wasn’t malingering; his life was at stake.
I’d become active in the state’s mental health coalition on many levels and was the congressional liaison for Arkansas’ National Alliance on Mental Illness (NAMI). I didn’t hesitate to use the contacts I’d made and called a congressman on the Veterans Affairs Committee and relayed our situation, asking for intervention.
We’d never used the Veterans Affairs hospital system for Tom’s care but I’d learned of a doctor at theLittle Rock VA with world-renowned credentials who was reputedly the best of the best in treating bipolar disorder. He was also known for being on the cutting edge of research.
At the time we lived six hours from Little Rock in the heart of theOzark Mountains but I knew I wanted Tom under this doctor’s care.
I wasn’t sure how I was going to get Tom from our home to the VA hospital and I wasn’t familiar with the city.
The congressman’s office called me and said, “We have a medical transport helicopter on standby. Let us know when you’re ready.”
My decision was instantaneous. “Let’s go now.”
Although the local hospital refused to provide care for Tom beyond medication management, they would not release him to another hospital. Our insurance paid at one-hundred percent and that’s practically unheard of in the mental health care arena.
I asked to see the hospital’s treatment plan and they hadn’t even formulated one. They had discussed transfer to a long-term custodial facility. I’d fought that battle before. It wasn’t going to happen now.
Tossing the hospital’s paperwork back at them, I said, “You aren’t willing to help Tom. He’s going with me and, yes, I know his record will be stamped AMA.” (Against Medical Advice) It wasn’t my first time removing Tom from a hospital AMA and I was sure it wouldn’t be my last.
So, once again, I found a wheelchair, packed Tom’s few personal belongings, and readied him for his flight to the VA Hospital in Little Rock where they were ready to accept him.
I didn’t forget Scooter was at home while I was on my way to Little Rock with Tom. I called Mary and she proved to be a guardian angel so many times over the next couple years when we needed a familiar and safe place for Scooter. Going to ‘Miss Mary’s’ was going on vacation for Scooter. He’d meet up with his old buddies and be in familiar territory.
The medical flight arrived. But the local hospital refused to sign a transfer for Tom to be released to the Little Rock VA hospital that was willing to accept him. The medical flight could not transport Tom.
It was time to put Plan B into place.
Please join me Thursday for Part 2 of ‘The Wrongs of Psychiatric Care.’