Room 802

Whether conscious of it or not, when moving into a neighborhood we invariably become familiar with the rhythm and pace of our neighbor’s lives. I know a few people who would argue that this makes “nosy” people of all of us but, being neither cynical nor jaded, I have an entirely different point of view. I can’t help but believe this is simply a part of our nature; we are hard-wired to seek out the companionship of other people. And just as every family must learn to deal with the antics of a “crazy Uncle,” most newcomers eventually accept all of us as neighbors – foibles and all.

Moving on to a life within a nursing home is no exception.

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Every Wednesday, Honora’s daughter and son-in-law bring a hot meal for her to share with them in the Activity Room at GVM. While caring for Mother these past two years, we have come to eagerly anticipate the ritual of these dinners as it gives everyone the opportunity to catch up with the lives of those we have met and befriended along the way. The conversation, laughter and food that are the mainstay of these reunions, represent a welcomed temporary respite from the often harsh realities of life within the nursing home.

There was something different about the energy flowing from the Activity Room this past Wednesday, however, that didn’t escape the attention of another resident, Dominic. Despite suffering a stroke two years ago which left half of his body as well as his speech greatly impaired, Dominic’s razor-sharp mind seemed to tell him that he might be missing out on some excitement within the room. Never one to let such an opportunity pass, he slowly wheeled himself toward the commotion so as to quiet his growing curiosity.

While not surprised to see Honora’s family eating dinner at one of the many tables, he couldn’t help but notice the many young people milling about the room – some playing pool, others cramped together on a couch, and another two eating alongside their father. As the patriarch of a large and loving family, this scene must have surely resonated with Dominic. When I noticed him inching further into the room, I couldn’t help but wonder if he was hoping to soak up some of the energy offered up by the young people.

With only another moment’s hesitation, however, he motioned me to his side. Pulling me close to him, he then mumbled, using the only patois left to him after the insult of his stroke, the garbled yet obvious question that was foremost on his mind,

“What’s going on?”

“Dominic,” I began, “these are the grandchildren of your neighbor, Aletha.”

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Aletha became a resident at GVM nursing home two years before Mother. Having suffered with vague, sundry complaints of joint pain since her late teens, rheumatoid arthritis didn’t manifest itself fully until she was thirty-six years old, then a wife and mother with three teenagers of her own. During the intervening decades since her formal diagnosis, this cruel disease ravaged nearly every joint in her body. For all my years of practicing medicine, I had personally never encountered a more deforming and debilitating case of rheumatoid arthritis.

In the six years or so immediately preceding her arrival at GVM, the life Aletha had cultivated over many years began to unravel as a result of this merciless disease. Subjected to untold orthopedic surgical procedures as well as various stints undergoing inpatient rehabilitation, Aletha was eventually forced to come to terms with the reality that she would always require professional medical assistance as she carried on with her daily life; this is ultimately how she came to be a resident at GVM.

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My family met Aletha and her husband, Leonard, soon after Mother arrived at the nursing home in July of 2008.

One wouldn’t necessarily be wrong when asserting I am prone to a level of familiarity with relative strangers that many good people simply don’t understand. Depending on my gut instinct when meeting someone, I often skip over introductions and small talk, taking the liberty of speaking to or joking with people as though I have known them over a lifetime. While many seem to understand and even appreciate this personality quirk of mine, others, admittedly, do not.

Aletha most certainly did NOT. Or so I thought.

Despite my best efforts, all initial attempts to charm this tiny woman seemed to fall flat. Try as I might, I simply couldn’t make headway with the doyenne of the 800 hall. I still wince at how effectively she could wither my fragile male ego with her knockout trio of silence, a glare that could melt ice, topped off with an ever-so-slow shake of her head. Like some tyrannical Queen from a book of childhood fairytales, Aletha held court from the perch of her Hoveround throne and might as well have been looking at me in those early days while declaring,

“I do not suffer fools gladly … and you fancy yourself my court jester? Off with your head!”

While clearly losing many of the early battles, I eventually conquered her heart.

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I don’t believe I truly had the opportunity to get to know and care for Aletha until after the death of her husband in the early days of 2009. Whereas many a widow may have elected to simply give up after the death of a beloved spouse, Aletha earned my respect and admiration for how she coped, at least outwardly, with his loss over time. As I became better acquainted with her over many months, I learned to appreciate her many strengths, passions, and resilience while also discovering that she was an extremely loving, amiable, devout, vulnerable as well as a wickedly funny old woman. Aletha was definitely my kind of girl.

Spending time reflecting on many of the elderly residents I have come to know at the nursing home these past two years, I often pondered the incredible physical hardships Aletha endured over more than fifty years at the whim of an indiscriminate and horrific disease. Given her cumulative suffering, she could have easily made a selfish decision long ago to simply live life on her own terms – to think only of her needs and concerns. And who would have blamed her?

Thankfully for her many family members and friends, Aletha didn’t make that choice; I seriously doubt she ever considered it.

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“What’s going on?”

When answering Dominic’s question I hadn't yet realized he was posing a rhetorical question.

Over the past two days he had noticed the change in the flow of traffic within the 800 hall; more and more people were moving into and out of his neighbor’s room. His mind suspected that which was, as yet, unspoken but his heart didn’t want to believe it was true.

Aletha’s life was drawing to a close.

Someone asserted a belief to me this past week that “people go to nursing homes to die.”

I respectfully disagree.

On a practical level, Aletha and Mother entered the nursing home so they might obtain the level of professional assistance they could no longer achieve at home. Simply put, it was an appropriate decision for both of them.

Surely, moving into a nursing home is not simply "the beginning of the end."

I will freely admit, however, that it took me a long time to come to terms with the notion that transitioning Mother into the nursing home might represent yet another beginning.

But as a helpful friend explained to my sister, “Don’t look at this as a negative. Your Mother is simply moving on to yet another phase in her life. She is no more capable of living life on her own terms than you are able to run as fast as you could twenty years ago. It’s a fact of life.”

Over the four years of her life at GVM, Aletha became an adored member of yet another community of people both young and old. On some level, I am confident her family wouldn’t deny that the friendships and support offered within the nursing home could not have been matched had she remained at home. Her involvement within her new “neighborhood” became an invaluable asset both to Aletha and her many friends alike.

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This past Saturday, Aletha’s family asked my brother and me to join them in her already crowded room as they prepared for her death. Standing at the foot of her bed reciting a silent prayer, I suddenly became aware of a low murmur percolating throughout the room. In a few seconds the sound became more pronounced and registered in my mind as the time-honored hymn, “Amazing Grace,” being sung by her entire family. My initial instinct was to leave the room out of respect for their privacy, but I was also struck by the honor of their invitation to join them – as family – to share in their sacred moment. Hymn followed hymn, each sung more boldly than the last, culminating with “In The Garden” bravely offered by her grandson, Joshua.

I stood in awe watching as family members and friends cried tears of both sorrow and joy for the Christian promise of eternal life awaiting their beloved, Aletha.

With amazing grace and abundant faith, they willingly offered her soul up to God.

The experience was profound.

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Twenty-four hours later as the sun set on another beautiful, crisp Fall day, I was again privileged to stand alongside two of Aletha's grandsons as she relinquished her final breath.

Shepherded by her loving family, a team of compassionate hospice nurses, and a host of caring friends and neighbors made possible by her life lived within a nursing home over four years, Aletha’s long journey came to a fitting end exactly as she might have envisioned it.

In Room 802 – the last address she would ever call home.

Letting Go

My guess is that most parents didn’t spend a great deal of time obsessing as to our whereabouts when we were children; the term “play date” would have only served to alarm them to the existence of “imaginary” friends. Most children I knew were simply expected to spend their free time outside, away from the “boob tube,” taking in the fresh air at play with friends.

The seemingly endless summer days of my youth began with the sound of screen doors crashing closed immediately after breakfast and didn’t officially end until the street lights came to life just as dusk gave way to night. As if by some force of nature, the artificial light oddly compelled Mothers to emerge from the same screen doors crying out the litany of their children by name, ending another day at play with a final declaration of, “It’s time to come home.”

Later as a teenager in Houston, most of my friends were fortunate to have parents who felt secure in obtaining summer passes to the local amusement park, Astroworld. On those days when a swimming or baseball practice didn’t stand in our way, many a parent wouldn’t hesitate to trundle a mob of teenagers off to the park as the gates opened, not expecting to see us again until well after nightfall. We spent those days, safe from foreseeable harm, running in mad circles attempting to break mythical records for most rides on the Dexter Frebish or Texas Cyclone roller coasters.

Those were very different times.

Showering the other morning, I was momentarily caught in some random reverie of my childhood; I wasted a goodly amount of water transfixed by the memories of those halcyon days without worry. I smiled at the thought of my teenage friends, our misguided notions and adventures, the carefree days at the park, and my (former) fascination with roller coasters.

Emerging from the trance, my mind turned again to Mother; somehow I managed to reconcile the memories of those long forsaken roller coasters of my youth with thoughts of Mom and her life with Parkinson’s disease.

At least during that predawn shower, it all made perfect sense.

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When I last made an entry to this blog, Mother was suffering from an upper respiratory infection that was making its way throughout the nursing home in wrecking ball fashion. Even a month after the bug made its first imprint on a resident, you still can’t walk the halls without hearing other residents coughing coughs that border on a presumption of pneumonia. The virus has proven itself to be indiscriminate and relentless.

At that time, Mother truly seemed to be fast approaching her physical Waterloo; as a physician, I was hard pressed to believe she had the necessary reserves to muster the strength to win this fight. So serious was the concern among her caregivers that a decision was made to summon her remaining children to the bedside.

Twelve hours passed.

My brother walked into her room the next morning to discover the secretions in which she seemed to be drowning the night before had (miraculously) “evaporated” into the proverbial “thin air.” Mom was awake, alert and proceeded to assure Jim that breakfast was, indeed, in order; she was “hungry,” adding that an, “omelet does sound really good!”

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This is but one example of how her life these past few years can be likened to riding a roller coaster; this is the metaphor, no matter how cliché it might seem, that resonated with me during my shower as I stood reflecting on her life since being diagnosed with Parkinson’s.

I can’t speak for you, but will admit that I rarely seated myself on a roller coaster without wondering for a fleeting moment if it was, in fact, a good idea. The difference between Mother and me is that I was always given the opportunity to make that decision for myself; Mother, and countess thousands like her, had no say in the matter and were simply told to accept that there is but one way off.

Her life since the diagnosis has clearly become increasingly difficult over time yet she has never allowed any of her children to be witness to her disappointments. She took to her place on that roller coaster existence with nary a complaint and has always demonstrated amazing dignity. Despite the fact that the years ahead of her promised to be both challenging and frightening, she always managed to laugh and smile along the way.

She has endured the ups and downs, twists and turns, lurches and bumps with silent courage and equanimity despite understanding the disease was certain to carry her to that certain, unhappy end.

There were also times when I rode roller coasters absolutely convinced I was going to die. The best I could do once the ride started, however, was to close my eyes, hang on for dear life, and pray that the illusion of an impending death was just that.

My illusion.

But Mother is not destined to finish this ride as did I; that childhood illusion will eventually beome her reality.

And her disease is nothing short of cruel.

Just when everyone was certain her struggle with Parkinson’s was finally at an end a month ago, the track of her ride took yet another unexpected turn for the “better.”

“For the better?”

I don’t know.

Watching as Mother travels this path alone, completely helpless to alter or smooth the course ahead, always has the effect of capturing our collective breath while invariably carrying us to the brink.

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My Reality.

There is much of which to “let go.” I realize I have long been digging in my heels, not wanting to let go even when facing the fact that the woman in her room shocks me every time I visit; she definitely looks very much like the Mother I have always known, but that woman also no longer seems to exist.

Yes, I know she isn’t going to get better; again, that Mother is all but gone.

And, I have wanted to say goodbye for a very long time but have also been deathly afraid.

Of what?

The answer is simple: I don't know what I will do without her.

In typing that sentence, it dawned on me that Mother may not actually be the person whom I am most afraid of losing anymore.

That person may very well be me.

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For her sake, I will need to find the courage to let go of my fears and, instead, pray that her long ride with Parkinson's will finally come to its end.

And when that day comes, I am hopeful I will have the clarity of vision to see a way to discover myself anew.

Perhaps then, I will finally unmask the inner strength that will allow me to sincerely utter the dread word.

Goodbye.