It was within a year that my mother entered the Motion Picture and Television Fund’s long-term care center that her lights were turned off. In retrospect, it seems sooner. If you think this is a damnation of the Motion Picture Home's level of care, it's not. That is only an apostrophe to a greater problem that exists in elder care, and specifically, the care of dementia.
I write this not as a condemnation of what happened to my mother specifically but as a general wakeup call to other children whose parents suffer from dementia and may be under another's care.
My hands are dirty, and I share my own complicity in mistaking her caregivers, as care givers. I'm not talking about those who fed, bathed, nurtured and loved her. The caregivers that I'm referring to are the manipulators — the puppet masters wearing lab coats who hand out anti-psychotic and 'black label' drugs as if they were auditioning for the role of Nurse Ratchett in a reprise of “One Flew Over the Cuckoo's Nest.”
Also read: Barry Diller Donates $30M to Motion Picture & Television Fund
These puppet masters, with every prescription of anti-psychotic and black label drugs cut the strings of those in their charge. And like a puppet, the head bows, resting on the chest, and the arms fall limply to the side, eyes vacant or closed behind a veil manufactured by pharmaceutical companies.
The system-wide breakdown of elder care, where non-pharmalogical intervention is forsaken in lieu of heavy drugging, is horrifyingly prevalent on a global scale.
The Motion Picture Home, unfortunately, ranks high among the abusers, and this is what must be addressed.
In a study published in 2010, 34.2 percent (see chart) of Motion Picture Home residents were being prescribed at least one anti-psychotic drug. We're not talking about a dark and foreboding asylum built at the edge of a stormy precipice — the shameful statistic is owned by the Motion Picture and Television Foundation.
We have to ask ourselves, are we OK with this? What good was keeping the doors open if what occurs on the other side is still characteristic of the mind set that wanted those doors closed. Forever.
Also read: Victory at the MPTF: A True Hollywood David and Goliath Story
One victory that kept the doors open does not mean we go home victorious. Our mission was always about the elderly, and for that reason we must now shift our focus to their quality of life.
Elder care is suffering from a system-wide breakdown where dementia is your ticket to an unearthly suspended animation. Bodily functions define the patient while personality hibernates. The diagnosis of dementia or Alzheimer’s is probably the main reason given to families why these once brilliant and outspoken members of the entertainment industry are medicated into oblivion.
Mary Stellar came into the Motion Picture Home under her own steam, marveling at the environment. Her decline was rapid. She deteriorated into a non-communicative state that was punctuated by brief episodes of unsocial behavior. She died about a year and a half ago locked in a chemical restraint whose main purpose was not in the treatment of her disease but in the controlling of her behavior.
She was my mother, and that is my opinion, formed from a partial list of her medical records that I had requested.
The wolf comes at a heavy price however much we recognize the sheep's clothing that he is wrapped in. My recognition came too late to save my mother.
The guilt I feel is tremendous. I was a vacant son who believed everything that her caregivers told me. When they told me that she was going to be administered Zyprexa (a heavy anti-psychotic that a 2006 study claimed could cause death in Alzheimer's patients), I agreed because I believed in them. How many others are blithely blinded by the authority of a lab coat and a medical degree?
When a medical team asks for your consent to the administration of drugs like Zyprexa, Olanzapine, Gabapentin, and other “black label” and anti-psychotics, your natural inclination is to trust the doctor. I was a fool, and I consented to whatever they thought would be beneficial.
However, it was not an informed consent. I trusted her doctor, and enjoyed embracing him when I would see him. After her death, when I woke up out of my self-centered stupor to question a diagnosis he made, his invitation to come in and meet personally was blocked by an in-house counsel. The counsel was good enough to invite me to ask her what was needed, but there is something wrong in talking about my mom's care with a lawyer.
Before my mother’s death, when the MPTF COO had told me that he would not allow her to participate in a Passover seder, he said it was because of her behavior. He didn't like my mom's behavior. Well, nobody would. The cries of someone deluded by dementia or Alzheimer's are unsettling and not for the feint of heart. What he seemed not to get is that “behavior” is more often “communication” than it is a symptom of disease.
Those aren't my words. They were the words of a doctor who pioneers the understanding of dementia, the behaviors that surround it and the non-pharmaceutical way to deal with it. Humanely. I heard his words at a "Dementia Care Without Drugs" symposium. A seminar where the MPTF in all of its wisdom didn't have one of their doctors, or senior health executives, attend — but instead sent an activities director.
Unfortunately, the activities director left before maybe the most important message to the caregivers in attendance was said: "If you're unhappy, chances are that your colleagues are unhappy.”
This was aimed at the caregivers in attendance who were there mostly out of frustration. They showed a willingness to learn more and seemed poised to stage an industry-wide intervention on behalf of those who have disconnected. We learned that the brain harbors a vast potential to adapt and retains primitive reactions that can be brought into play even during an unconscious state.
We learned that behavior is often communication. We learned that there is hope without drugs. We learned that there is life in dementia.
Please join me and your community on Facebook as we transition from our victory at the MPTF to a greater victory on behalf of our motion picture and television elderly. Please also go to the California Advocates for Nursing Home Reform.
I'd also like to thank the Los Angeles Press Club for once again recognizing this blog and our Facebook page as worthy of a nomination for the 54th Annual Southern California Journalism Awards.