Jousting with Dragons: A Manifesto for Independence
An Article by Mr. LTC
"When first thrust into the role of a long-term care caregiver or patient, we begin to understand that our adversary is a formidable opponent.
And as the true nature of this adversary is revealed, you begin to realize what's at stake - Everything.
What we all value most - our dignity, independence, family relationships, even our life savings - becomes barter overnight.
In essence, our very lives become negotiable. In the mere blink of an eye, the concept of "safe harbor" vanishes from our lexicon.
Oddly enough then, against this backdrop I consider my diagnosis of Parkinson's Disease as a stroke of good luck.
Unlike Christopher Reeve, I've had time to familiarize myself with my opponent: to take inventory, to prepare myself.
Unfortunately, a significant number of those reading
this will not have the good fortune I did.
You will meet your adversary suddenly, abruptly, with little warning,
And you will meet him, on his turf.
And he will show you little mercy." - Martin K. Bayne
One of the first memories I have is of my grandfather, paralyzed by a stroke at age 49, struggling to tell me that he loved me.
I did not understand the physiology of a cerebral infarction; but I understood his frustration as he would shake his cane and desperately mouth the words, knowing full well that the words would never come. That was the first time I had seen a grown man cry.
Some years later I visited my great-grandmother in a nursing home. The once vibrant woman I had known smiled when she saw me, but as I approached her I knew something was terribly wrong, and recoiled when I sensed the cold, frightening dementia that stared out from behind vacant eyes.
During my transition from child to adolescent to adult, there would be other visits; frail, aging family members and friends. It was like a movie with the same scenes being replayed over and over - only the cast would change. And each time I left a nursing home, I was overcome with a suffocating feeling of helplessness and claustrophobia; a reaction to the despair and resignation that hung in the air like the ubiquitous odor of stale urine.
Karen Stone, a beautiful and talented author, battle weary from years of struggle with multiple sclerosis, refers to those who are "disabled" and those who are "temporarily able bodied" in her book, Awakening to Disability, a sobering reminder that even Superman is only a three foot fall away from becoming a ventilator-assisted quadriplegic.
The Hand is Dealt
The neurologist at Albany Medical College completed his diagnostic workup, reviewing the EEGs, EMGs, CAT scans, MRIs and lumbar puncture records from previous neuro consults. When he said, "you have Parkinson's Disease," I remember thinking how badly I wanted a cup of coffee.
He wrote a prescription for Sinemet® and I went in search of a Dunkin Donuts.
I was not in the mood for a melancholy Martin Bayne retrospective that day, nor was I compelled to understand the neuropsychopharmacology of the sample bottle of levodopa in my jacket pocket. I just needed the companionship of a 'large, light and sweet - regular' coffee and a good cinnamon bun.
That was seven years ago. I was 45 years old and still on my Parkinson's honeymoon. The concept of disability was a verb I always conjugated in the future tense. I was relatively free of symptoms and enjoying what would turn out to be the last period of my life in which I would describe myself in 'good health.' The honeymoon was about to end.
The Alpha-Omega Continuum
We arrive as infants "trailing clouds of glory" from the farthest corners of the cosmos.
Ambassadors of the infinite, we emerge from the life support capsule that had been home for the nine month journey and gulp our first lungfuls of air. Our brains, a complex and massive set of discrete, parallel processing units, are already analyzing and storing data, and most of the body's organ systems are in full power-up mode.
During the first few months following our arrival - stage Alpha - we are in our most vulnerable configuration: we are unable to defend ourselves; feed, dress or clean ourselves. In fact, our very existence depends entirely on the assistance, nurturing and good will of others, many of them complete strangers.
Deoxyribonucleic acid to the rescue. There are social anthropologists that will argue to the contrary, but I am convinced that homo sapiens are programmed biologically to care for, protect and nurture their very young. Notice I said very young. That's because this particular DNA imperative seems to be time dependent - the older a child gets, the less compelling the imperative. And herein lies the rub. If we, as a once very young child survive adulthood and middle age, then there is strong likelihood we will move towards the Omega portion of the birth-to-death continuum.
Here, we prepare to end our journey exactly as we arrived: often unable to perform the normal activities of daily living, and dependent on the care and nurturing of others. But the imperative to care for a 93 year old child shifts from a purely biological one to a social, moral and spiritual one, as that "child's" caregivers have hence passed on. Rather, it becomes the children now who must decide whether they will honor a covenant made in utero: an unspoken promise to protect and nurture those who gave us the opportunity to experience the greatest miracle of all - life.
The Journey Begins
Well, here we are, seven years and many donuts later. In neurological terms, most of the dopaminergic cells that I once counted on for relatively normal muscular coordination have perished. If, like me, you are in this stage of Parkinson's, you become dependent on the pharmacological regimen that seems to dominate every waking moment of your life; dependent on your team of physicians; dependent on the kindness of those who will buy your groceries, cook your food and clean your house.
Until quite recently, dependency was a concept with which I was unfamiliar, although I've now slowly begun to accept my loss of independence and the assistance of others. Conceptually, it is still awkward to acknowledge that I am now "disabled;" there is simply an awareness that my life has irrevocably changed, and in the course of this change, the reality of ADL (Activities of Daily Living) failure. Tying my shoes and taking a shower have suddenly become effortful - some days impossible.
A few months ago, my doctors stated unambiguously that it was "no longer in my best interest" to continue to live alone. It took a few days for the imperative to sink in, and when it did, I distinctly remember a profound sense of confusion and despair. It was at this moment that I was forced to accept the reality of my disability. But what frightened me even more was the knowledge that I had absolutely no idea what not living alone would look like; I had no idea where to turn, or what to do. Ironically, as a well -known health care advocate and prolific publisher and author of issues related to long-term care, I was startled to realize that I was unfamiliar with even the most rudimentary knowledge necessary in order to proceed upon my doctor's advice.
To borrow a metaphor I often use, I felt like I was being sucked into a piece of farm machinery - I could grossly envision the inevitable outcome, but felt powerless to change it. At the center of this personal challenge, in the eye of the hurricane, years of advocacy began to crystallize like long, thin strands of DNA into a tangible purpose. From that core purpose came a passion and a sense of determination that emboldened me with a mission - a clear understanding of the primordial covenant we have with our elders, particularly those who are frail and ill, and the need to reaffirm that sacred covenant against the backdrop of a new century of human history.
man·i·fes·to: a written statement declaring publicly the intentions,
motives, or views of its issuer.
Arthur Schopenhauer, perhaps the most influential philosopher of the nineteenth century, described the three stages in the recognition of any truth: first, it is ridiculed; next, it is resisted; and finally, it is considered self-evident
The foundation of this manifesto rests on a bedrock of one simple truth: that our long-term care delivery system is on the brink of collapse, and most Americans are either unaware of or indifferent to this reality.
For decades, most of us have lived in denial regarding the physical, emotional and financial trauma, which often characterizes LTC. We refuse to talk openly about the possibility of someday needing protracted medical care. Instead, we say, "I'll never have a stroke or develop Alzheimer's Disease. Even if I do, the Veterans or Medicare or my Elk's Lodge or children will take care of me." "After all," we reason, "I'm sure that after working and paying taxes for 40 years, I'm at least entitled to some kind of care."
Tragically, the ultimate consequence of that denial is often both traumatic and unnecessary - to the individual, their spouse and family, and their community.The nation's long-term health care delivery system is in crisis - collapsing under the weight of public indifference, a lack of political leadership, and a significant institutional bias created by thirty-four years of government payment systems, which have created a dramatic fissure disconnecting the basic and fundamental, economic relationship between cost and quality.
Living with Parkinson's Disease for five years has led me to realize that the quality of my life - as well as the quality of life of the millions of similarly situated, chronically ill, disabled, frail and elderly individuals also suffering ADL failure - depends on the future viability of our LTC system.To secure that viability and effect genuine LTC reform, we need to address three, essential areas:
Education: We need individually and collectively to understand the nature and scope of the problem.
Choice: We need to acknowledge our options. The current institutional bias, coupled with the conflict arising out of the Medical Intervention model vs. the Quality of Life model, have failed us miserably. There are alternatives.
Financing: We need to create a viable method of financing LTC that involves both public and private sector support as well as the individual acknowledgement of equality and personal responsibility. In short, we must all be held accountable.
Genuine LTC reform will not come easily. There is a great deal of money and political power at stake. Nevertheless, to ensure our very survival, We the People must begin to dictate the terms of that reform, and We the People will determine what is in our own best interest.
This mission is not for the faint of heart, but we must lead the crusade for genuine reform as if our lives depend on it - because they do.