Prior to my diagnosis of Young Onset Parkinson’s Disease in 1994, just before my 44th birthday, the concepts of morbidity and mortality were statistical anomalies; ignored, for the most part, like unwanted relatives. That would change, however, in ways I could not fathom.
Three weeks ago I was taken by ambulance from the Assisted Living Facility (ALF) I now call home, to an acute care hospital ER where I presented with a 103o fever, delirium and difficulty breathing. After eight hours of poking, prodding, blood work and X-rays, I was diagnosed with pneumonia and exacerbation of congestive heart failure. I waited for a bed on an ICU step-down unit to open, and three hours later was admitted to the sixth-floor unit, where a broad-spectrum antibiotic (the first of sixteen IVs) was started in my left antecubital vein.
A week later and pneumonia-free, I was transferred to a Skilled Nursing Facility for rehab – a move mandated by my ALF. Finally, after two weeks of physical and occupational therapy, I returned home yesterday, closing the circle, and once again cheating the Grim Reaper.
After twelve years of life in an ALF, I’d like to report that going toe-to-toe with death has become just another fact of life. But it hasn’t. In fact, the older I get (now 64), the more I dig in with all the tenacity I can muster to stave off what I know is natural and inevitable.
Americans rarely talk openly about death — the hospice movement is trying to change that, but the chronology of genuine change is more likely to be measured in generations than years.
According to The National Hospice and Palliative Care Organization (NHPCO), the name “hospice” was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London. Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.
I’ve witnessed a significant number of my fellow residents — in three ALFs, over a twelve year period — drop their bodies and move on. Some transitioned quickly, with no fanfare or goodbyes; often in their sleep, while still others appeared to slowly enter a deep and silent hibernation.
When possible, and the family deemed it appropriate, I would spend time with the dying resident, often holding their hand and reading from an inspirational book or web page (http://DynamicKindess.com) Other times I would merely sit quietly next to their bed, in meditation – never a “pity party,” just a proper Bon Voyage from a fellow human being.
I was particularly moved by “Charles,” a man in his mid-nineties who sat by himself in the dining room, conversed with none of the other residents, and always wore the same faded-grey trousers and blue cardigan sweater. One day I walked over to his table after lunch and extended my hand. He starred at me for what seemed like an eternity. Then, slowly and cautiously he raised his hand to meet mine. When our hands touched, I was moved beyond words, and I watched as a smile spread across his face. After that day, at the end of every meal, I would make my way across the dining room to shake his hand. Neither spoke; but volumes could have been written about the change in each of our lives.
The grey trousers and cardigan sweater? He threw them away and began to wear colorful outfits – and one day walked into breakfast with a muted pink shirt and dark pink sweater. Something inside me said it was his last day on earth, and after his meal was finished, he broke tradition and walked over to my table, taking my hand in his. Tears were already streaming down my cheeks. “Don’t worry,” he said, a smile playing at the corners of his mouth. “Everything will be all right.” That night, Charles died, taking a part of me with him.
Will I have the grace and courage to look death in the eye and smile when it’s my time to pass?
Hard to say. But in the interim, there are hands to shake and lives to touch.