Postscript: The Girls From Table 5

The Girls From Table 5

I hated the table from the start.

Any other dining room arrangement would have been more appropriate to satisfy Mother’s needs as well as my own. She had been assigned to the smallest of tables in a corner of the dining room seemingly away from any semblance of friendly interaction and conversation. I immediately spied another table of women who genuinely appeared to enjoy each other’s company and quickly recommended the change. But it was not to be.

Mom was stuck in her place at the proverbial children’s table with a couple of cantankerous looking old women. I was not hopeful.

Thankfully, time and experience teaches most of us that initial impressions rarely ring true; the girls from Table 5 would eventually win our hearts.

There was Lola, the pill-hoarding, wardrobe/manners Nazi, whose idea of discretion was to hold a cupped hand to her mouth while offering unsolicited and not-so-quiet pronouncements of guilt at any wardrobe offense or lapse in decorum. She was clearly an old curmudgeon poorly disguised as a sweet old lady.

Then there was Murel – NOT Muriel. My first thought was that she was the picture perfect embodiment of what advancing age would have done to the innocence of Cindy Lou Who from the Grinch. While Seuss’ Cindy may have preferred Who Ham or Roast Beast, Murel’s favorite meal would surely have consisted of a tub of margarine.

Today, I write of Ms. Delia, who came to GVM in October of 2008 and subsequently joined the troika – rounding out a foursome at Table 5.

I freely admit to immediately falling for this feisty, breathlessly frog-throated woman. She was the perfect counter balance to Mother’s shyness among strangers, Murel’s sparkling lunacy, and Lola’s demand for order in an otherwise chaotic environment.

A product of the Depression, Delia, nonetheless, doggedly pursued a college degree in education from Wayne State University going on to teach “everything” within the walls of a Nebraskan one-room school house. In the years that followed, her marriage, coupled with the demands of her husband's ever-changing career, had the family move through various incarnations in Nebraska, Texas, Louisiana, and, finally, Roosterville.

While they never knowingly met, this also happened to be the same untouched farmland hamlet into which my Mother and Stepfather eventually settled.

It is a small world.

When Delia arrived at GVM, she was full of energy and took every opportunity to engage in vibrant conversation and a good game of Skip Bo with her daughter and a friend. She also didn’t shy from handing me a good measure of well-deserved grief on occasion.

I am not personally inclined to treat these elderly residents with kid gloves; I feel that to do otherwise is to deprive them of the intellectual respect they are due. With time and the development of trust, I zeroed in on some of the buttons which pushed each of the ladies in sundry pleasant directions; they genuinely seemed to revel in the good natured (and well intended) give and take.

Often the prodding would have Lola loudly labeling me a “smartass” all the while assuring me that she loves me. And ever incandescent Murel certainly could do no wrong blowing kisses my way, supporting a fragile male ego by further asserting that I am a “very handsome man.”

And, there was Delia. She rarely dropped a beat, almost never missing the opportunity to give as “good as she got.”

Over the past year, we have all been fortunate to share in her joy as a beloved granddaughter married and subsequently wasted very little time providing Delia with her second great-grandchild, Kane. While I was never certain if the couple had moved to Wyoming, South Dakota, or Kansas, the specifics really didn’t matter. She beamed with pride at the telling of every twist and turn.

She clearly loved her family. I distinctly remember the moment she proudly uttered the declaration that her family “was the most important thing I have ever done.”

Delia’s family and friends began the process of mourning today; she passed away late last night following a devastating stroke.

While extremely sad, I am also compelled to smile and inwardly laugh at the thought of Delia and the great joy and laughter she brought to the lives of those around her.

Over the past year, a persistent source of consternation for Delia came at the hands of a less than agreeable roommate at GVM. Her daughter assured me that Delia never had so difficult a relationship with another person in her life. Delia desperately wanted nothing more than for her “problem” to disappear.

As it turns out, Delia finally got her wish.

Just a few days ago, the roommate was moved to another room after breaking her hip and leg.

The immediate question that came to my mind – and out of my mouth – was, “Did Delia do it?”

Absent Delia’s death, Table 5 was already no longer what it used to be. Wheelchair bound, Mom no longer takes meals in the dining room instead preferring to eat early within her room; Murel has become a veritable vagabond happily flaunting the “rules,” eating margarine while making the rounds at other tables; and, well, Lola remains – the single hold out who continues to fight the good fight.

I didn’t know these three remarkable women before they came to the nursing home; there is a part of me that does like to imagine the full width and breadth of the lives each of them enjoyed before time and circumstances brought them together at that smallest of tables.

There was no getting around it. I absolutely never wanted to like anything about the nursing home, that stupid table, and the old women who occupied space at Mother’s side during meals. But each of these women eventually managed to worm their way into our collective hearts without really trying. We are all the better for it. I personally never would have predicted that such an unruly admixture of personalities and experiences could have melded into such a perfect union of souls.

Whomever they were, or wherever life took these women prior to their arrival at the nursing home was never a part of our shared experience. With time, all of us simply came to love the women who were living in the here and now – the girls from Table 5. Without reservation, the only place to be!

In the next few days or even weeks, family and friends will gather at Stroud’s in a celebration of your life, Delia; they will pass the chicken, mashed potatoes, green beans – and, yes, even the bottle – around the only table that truly mattered in your life. The table of your making.

It is said that a person is never completely gone so long as one person remembers her name.

Your family and friends will not allow Kane to forget you, Delia.

I will cherish the memories of my friend from Table 5.

January 1941

Doubtless to the eventuality of being dragged into the world wide conflagration, in January of 1941, FDR delivered his famous “Four Freedoms” speech to Congress and the nation; his words would become a clarion call to arms.

Two years later, Norman Rockwell immortalized those four enumerated freedoms ~ Freedom of Speech, Freedom of Worship, Freedom of Want, and Freedom from Fear ~ by crafting posters to illustrate the concepts. After the works were summarily rejected by the War Department (as a donation), Rockwell went on to offer the illustrations to the Saturday Evening Post. When first published in February of 1943, the popular response was overwhelming resulting in thousands upon thousands of poster prints ordered up by everyday people.

The images were instantly iconic.

Freedom from Want.

This poster never fails to capture my interest; it tugs at my emotions. When contemplating the scene, I am at once a guest among a family of strangers, intruding as they gratefully celebrate another Thanksgiving. Yet, even in the midst of these strangers, I can’t help but feel a familial connection, and am instantly transported to another time, place and celebration of my own choosing. This is the essence of the sway this illustration holds over me; it plays on my nostalgia for the days, now past, when an ideal gathering of my family was fully realizable.

For as long as I can remember, Thanksgiving has been spent visiting Mother. This year was no exception. Time and circumstances, however, have changed everything.

My first reaction Thursday when I arrived at Mother’s nursing home was, “Who are all these people?”

Spending time with someone in a nursing home, you gradually become familiar with your surroundings. One aspect of this comes with the eventual recognition of many of those family members who frequently visit loved ones. Over the course of this past four day weekend, however, GVM was replete with people I had absolutely never seen before; seeing them for the first time, I couldn’t help but reflect on the individuals whom my father once derisively referred to as the “ETC’s” of Churchgoers ~ those who only attend services at Easter, Thanksgiving, and Christmas.

I am not passing judgment. I have spent enough time visiting Mother at the nursing home that I have now also come to know and even care for many of her fellow residents. To see so many of the elderly spend days, weeks, and months with nary a friend or relative stopping for even short visits is enough to tear at the most callous of hearts. From my perspective, it is a form of neglect I will never comprehend.

But these folks who were swarming about the nursing home this past weekend, unfamiliar to me or not, had at least made the effort to fulfill a Thanksgiving wish. It was very good to see.

There is a fairly large activity room immediately adjacent to the private residence wing of Mother’s nursing home; there is generally very little interest in it most days. As a result, my family makes great use of the room mainly as a way of breaking the monotony of Mother’s days given that she is effectively bedridden. During the holidays, however, other families sign up to reserve large blocks of time for the room; on these occasions, I will jokingly admit to an ever-so-slight tinge of resentment borne out of a squatter’s sense of entitlement.

The family of one resident who reserved the room this past weekend must have numbered twenty or more. Every generation from infant to great-grandmother was well represented. Chaos was abundant as one might well imagine.

I couldn’t keep my eyes off of the great-grandmother, a fellow resident at GVM, sitting quietly in the midst of all this organized confusion – smiling and happily soaking it all in. She was as much a stranger to me as the Mother in the poster, but just as I am able to immerse myself in the artwork, I instantly understood this grand lady knew exactly how our Mother had always felt when the family was together for Thanksgiving.

Imagine two people living quietly on acres of bucolic terraced gardens, ponds, meadows and woodlands complete with coyotes, deer, and wild turkeys. This was the scene on any Tuesday leading up to the arrival of family before Thanksgiving; twenty-four short hours later, however, several planes, and automobiles always brought new meaning to their understanding of the word “wildlife.”

My family is not shy, for the lack of a better word. We are also – most definitely – not quiet (except for me). We laugh and talk a lot, and since someone invariably feels he/she isn’t being heard, the volume eventually works toward a cacophonous crescendo that can become deafening – even, maddening. It’s family.

Watching the great-grandmother in the activity room, I was immediately taken back to near picture perfect mental images of Mother during our Thanksgiving conversations. She was never interested in being in the thick of these bull sessions or the center of attention. No, Mother always took up an unassuming position at the perimeter of these confabs, sitting quietly, taking in all the noise and general craziness.

It wasn’t until I reviewed some old video from a family gathering several years ago that I first took notice of something curious which had somehow never registered with me before. Seated at a chair in a corner of her formal dining room, Mom was again listening intently to the mayhem surrounding her Thanksgiving table. No matter what jokes were being told or political editorials made, there was Mom – sitting quietly, smiling a smile that spoke volumes.

Her smile was beautiful in its simplicity; Mom was at home with her children and grandchildren. Nothing was wrong with the world.

Our Thanksgiving at the nursing home was a subdued affair this year. The four of us took our homemade meal in her room where there was very little conversation, the only real noise coming from a flat-screen football game.

While I was very happy to have the opportunity to share another Thanksgiving with Mother, I couldn’t help wonder if she might have preferred trading places with the great-grandmother down the hall.

I was also left reflecting on the poster; if given the opportunity, to what nostalgic time, place and celebration would the image transport her?

Whether it was down the hall in the activity room or home, with strangers or family, so long as there were people surrounding a table enjoying each other’s company, free from want, I believe Mother would have simply sat awash in the chaos and smiled.

Awakenings

For myself, there is nothing quite like a beautiful late fall/early winter day; the kind of day, while certainly cold, that somehow manages to also feel warm. On such a day in New York City, I enjoy spending time in Central Park “people watching” at the boat pond near the statue of Bethesda – the winged angel which stands as a memorial to the naval dead of the Civil War.

Unfortunately for me and a hundred or so medical students and residents, I was scheduled to lecture at the NYU School of Medicine effectively ruining one such December afternoon covering the lively subject of hypothermic circulatory arrest. We somehow managed to muddle our way through the hour of collective boredom, everyone thankful for the applause which came as I concluded my remarks; I knew this wasn’t commendation for a great lecture but, rather, acknowledgement of the freedom to go make the most of what was left of a beautiful Saturday afternoon.

As I headed for my own quick exit, I was stopped by a faculty member who asked if I might be interested in attending a private presentation by Dr. Oliver Sacks; he was going to discuss and also show his documentary, “Awakenings,” filmed in 1973 and inspired by his book of the same title. Gladly accepting the invitation, I was then informed the film has curiously never been aired on American television. (It still hasn’t.)

The documentary centered on the years after WWI when a “sleeping sickness,” known as encephalitis lethargica, made its ways across several continents. The predominant symptom was a comatose state that had the potential to last for months or even years. Of the millions who contracted the sickness, most died in the early stages; the others often went on to suffer some of the same disabling conditions of Parkinson’s patients: greatly impaired mobility, rigid twisted limbs, and drastically altered relationships with time.

Of the many thousands who did not die, most had contracted encephalitis early in their lives. Of these, the majority went on to be warehoused in chronic care facilities for decades.

They were considered the “living dead.”

The nurses who attended to their every need in these facilities, however, eventually began to insist there were vital, rich, intelligent personalities trapped within these “frozen statues.”

Enter, Dr Sacks. He came to the United States from Britain to pursue neurological research but was ultimately discharged from his lab due to a general “lack of discipline;” he was then advised to, “Go work with patients; they’re less important!”

After arriving in the late 60’s at a hospital in the Bronx, he became acquainted with and was also struck by the post-encephalopathy patients. He, likewise, later came to appreciate the concerns raised by the nurses, after personally sensing vital “forces at work” within these patients. With no small amount of effort, ridicule, and red-tape, he eventually managed to gather these patients into a single community within the hospital and then administered, L-Dopa, the “wonder drug” that had proved effective in the treatment of Parkinson’s. His subsequent successes and failures inspired his book, documentary, and eventually a Hollywood movie.

After his presentation, I recall wandering somewhat aimlessly around Washington Square near the campus trying to grasp everything I had seen and heard. I remember distinct feelings of wonder and awe intermingled with confusion and bewilderment. Clearly, his work with these patients had no direct bearing on me or my own work but the presentation had certainly left an impression. When I thought of the images of these patients and their personal struggles, my mind moved as if by a compass toward a personal magnetic North,

Mother.

I have recently been reflecting on that fortuitous day in December a couple years ago. How was it I managed to happen into an invitation to hear this gentle man speak? How fortunate was I to be accorded an opportunity to view this seldom seen documentary -- to be witness, after the fact, to the actual faces of those patients who comprised the miracle of the “awakening” which emanated from his vision and administration of the drug?

On a most superficial of levels, there are certainly days I wish we enjoyed the luxury of some potion, elixir or even a scriptable drug that could simply make Mother’s days better. Each of us wishes there was a sure-fire way to consistently allow us to resurrect her fully into her own life, and her into ours.

Despite there being no such tonic, we do sometimes enjoy a brief respite from the depressing silence and deepening sleep which encompass most of her days.

It was on another Saturday morning not so long ago. I was walking down one of the many hallways that lead to her room when I was stopped by a family member who assured me, “it was a day for sleep.” The news didn’t necessarily affect me one way or the other as this now seemed "normal."

As I walked into her room a moment later, however, I was immediately taken aback by what I saw.

Mother was in bed but certainly not asleep. After turning her head at the sound of the door opening, her eyes shined bright ~ lit with the spark of certain recognition. She then proceeded to smile beatifically, saying,

“Hi, Bobby! How are you, sweetie?”

Words fail me when asked to articulate my feelings as she uttered those words. There is no good way to describe a moment such as this.

She was beautiful that morning; everything from her hair, makeup, clothing, and skin color was perfection. And what of her voice? Speaking with the same strong, familiar voice I remembered from my childhood, and with a clarity I had not heard in many a year, she went on to answer,

“Yes, I would love an omelet – but only if it is as good as it was yesterday!”

My immediate instict was to start making phone calls; I wanted everyone to have the opportunity to share time with “Mom” as well.

After what seemed like a reasoned conversation between Mother and my oldest brother, she went on to end the call with an invitation to, “come visit whenever you can,” and with reassurances of her constant love.

Mother handed the phone to me when she was through; I then walked out into the hall and heard my brother exclaim,

“What in the hell has happened?!!”

Speaking to him later of this conversation, he went on to thank us profusely for calling him so that he could share in her own “awakening,” of sorts; he hadn’t had such a conversation with Mother in years. He further confided that the short-lived moments with “Mom” eventually reduced him to tears.

It has been said the story of Dr. Sack’s, the administration of L-Dopa, and the awakening of his patients is fantastical; a tale of the magical elixir that bestowed new life and, just as suddenly, took it away. Long before Dr. Sack’s, however, stories such as this had been the basis for countless legends of mythology, fairy tales, and science fiction.

To me, his story is simply profound.

I don’t believe we are destined to know what it is that allows us to occasionally experience a genuine visit with the Mother we have always known and loved. Through these brief interludes with Mother, I believe I come close to better understanding the wonder, joy and awe which surrounded the return of Dr. Sack’s patients from the “dead.”

Our story with Mother is no less a cautionary tale. Time has a way of taunting us with glimpses into that which was, all the while forcing us to again retreat ~ to accept that which is, as well as inculcating fear about that which has yet to come.

I refuse to buy into the fear, however. While Mom’s disease remains incredibly difficult on so many levels, we have learned there are truly extraordinary “gifts” that have come to us as a family along the way.

A Saturday morning spent visiting with Mother is one such gift.

For the rest of the time, we are left to surround ourselves with pictures and memories of Mother as we would all like to remember her.

And, while each of us may have to eventually remind Mother every time we see her that we are her children, we will, in the meantime, try very hard to concentrate on the fact that we do still have Mom.

She Sleeps

I recently watched the older, better version of the film, "Yours Mine and Ours," starring Lucille Ball and Henry Fonda as widow(er)s who met, fell in love ~ only later discovering they shared 18 children between them.

In this movie, as often occurs in real life, love trumped reason with the two eventually marrying, thus creating a setup for untold mayhem as they melded their menageries.

After settling their 18 tax-deductions into bed, the two naively prepared to enjoy the first night together as husband and wife. The anticipation was short-lived, however, when three or four of the youngest burst through the bedroom door announcing their intention to sleep with the newlyweds out of fear of new surroundings as well as a raging storm. Life would never be the same.

The next morning I awoke at 3:50 AM. I hadn't received a page ~ I wasn't even on call. Wide-eyed, I lay in bed staring at the ceiling thinking about the crazy movie as well as lamenting another lost opportunity to "catch up" on my sleep. Suddenly an odd, random thought crossed my mind:

Until the past year or so, I had never seen Mother sleep.

Why the thought captured my imagination I will never know but it struck me in such a way that any return to sleep lost out to a chair and computer keyboard.

I would assume many would argue my family was a bit provincial. While we were certainly allowed in their bedroom during the day, I can think of no circumstance which would have warranted an intrusion into the sanctity of the room at night. I can add with absolute certainty ~ storm or no storm ~ none of us ever sought sanctuary in the safety of their bed; it simply never happened.

For myself, I find this business of jumping onto the beds of family and friends to be perfectly natural; I always feel a bit closer to others after these early morning, rumpled hair, blurry-eyed conversations ~ as if I have taken yet another step toward premium membership to a club. But for all the enjoyment of discussing politics or planning the day, I will admit to a sub-rosa "pull" that would have me get up and leave the room. Somewhere in the dark recesses of my dusty brain, the distant admonishment not to disturb the sanctity of a bedroom survives.

Following what I had always presumed was the natural order in everyone's life, Mother was up and dressed well before any of her children. Once we were all eventually enrolled in school, there was the daily process of making sure each was appropriately attired (siblings claim I once somehow managed to wear pajamas to school) followed by a hearty breakfast ~ that "most important meal of the day." After finishing, each of us was bustled out the door, packed lunch in hand, to then make our way to school ~ times being different, everyone walked.

If Mother then took a much needed nap, I never knew it.

Mother operated in high gear; when her health allowed, she was never deterred by any person or for any reason. She was the living embodiment of the proverbial Energizer Bunny.

When she wasn't shopping for groceries, making dinner, baking desserts, or cleaning she somehow managed to find time to garden, sew, knit, take the occasional art class, play bridge, or raise a never-ending lineage of stray dogs, cats ~ even fowl.

It was only after our stepfather retired from corporate life that we began to see the two of them slow down a bit; the first small step was in the form of short naps taken in the afternoons. I can personally sleep anywhere and at any time ~ medical school and residency has a way of conferring this ability. For the life of me, however, I never saw Mom take a nap on a chair or her favorite couch; she reserved sleep for the privacy of her bedroom.

Specialists have long assumed people need more sleep as they age; this is what I assume my grandfather referred to when lamenting that "youth is wasted on the young." The notion that sleep starts to deteriorate in middle age and steadily erodes with advancing age seemed so obvious that few challenged the prevailing wisdom.

Researchers now feel, however, that sleep patterns do NOT change much from the age of 60 or so; the studies seem to indicate poor sleep is not due to aging but, rather, results from illnesses and the medications used to treat them.

There also seems to be a recognized process whereby poor sleep feeds back to cause a further reduction of health. At least as regards pain, a common factor in disrupted sleep, a restless night can potentiate pain the next day which can further make sleep more problematic.

In Mother's case, she experiences what can only be labeled "fragmented sleep." Her interrupted pattern of sleep has led to impairment of her pain pathways. She feels pain more easily, is less able to inhibit pain, and develops more frequent neck and backaches. The vicious cycle ensues.

Fifteen months ago, while clearly suffering the ravages of Parkinson's disease, Mom walked through the front doors at GVM on her own two feet. Over the next couple of months, she did everything ~ including breaking through a security door ~ to "get the hell out of that place" ~ to go home. The nursing home could not initially deter our Energizer Bunny.

Effectively bedridden since the beginning of this year, however, she is no longer capable of pursuing an exit strategy or anything else that once mattered; instead, she spends more and more time sleeping her days away.

It has admittedly been unsettling seeing Mother spend so much of her time in sleep. Strangely, it has never seemed as if I have intruded on her privacy as I watch her sleep ~ so much about life in a nursing home requires everyone to forfeit most of what exemplifies a "normal" existence. Over time I have even come to somehow enjoy listening to the quiet cadence of her breathing ~ there is some small comfort in this.

But there is also the natural inclination to spend time lamenting the woman that was; the energetic Mother who could make everyone around her seem slothful as she moved through her days. This is clearly not the life she envisioned for herself ~ a fact which saddens all of us. I have a sense that if Mother were fully aware of her circumstances she would have a lot to say about how she is spending these days. As for the rest of us, we have learned to accept the simple benefit of sharing time together; asleep or not, being with Mother is a gift.

When asking my oldest brother to confirm or dispel my notions about Mom and sleep, he went even further adding he "wasn't altogether certain she ever slept."

He then relayed a forgotten memory from a distant Christmas Eve years ago when Mom "slept" on the floor of our room ~ apparently out of fear we boys would ruin our morning surprise. All night, as we tossed and turned from excitement, Mom was repeatedly heard murmuring the admonishment to, "lie still."

Whether she actually slept that night we will never know.

Rest assured, she was there when we awoke.

Schweigen

Working alongside famed heart surgeon, Dr. Denton Cooley, never failed to make me wonder anew how I managed to enter his world; simply watching him perform surgery is privilege enough.

On this day, he was performing a rare, complicated procedure he had developed decades earlier. The room was unusually quiet, so I took the cue to strike up another good conversation.

I was particularly passionate at that time about a book written by Doris Kearns Goodwin centering on the White House years of Eleanor and Franklin. So, while continuing with my work, I decided I would share the fascinating information I had gleaned with anyone who might want to listen.

After (reportedly) "droning" on for a while, I was suddenly blinded by a light. Dr. Cooley had taken his attention off the surgical field, aiming his bright Luxtex headlight directly into my eyes.

Astutely realizing he needed my attention, I asked,

"Is there something I could do for you, Dr. Cooley?"

He responded by mumbling good naturedly,

"Robert, do you ever shut up?" (The room erupted in too much laughter and applause.)

Since the day I received my very first report card, an apparent passion for "talking" has been an issue for me.

Over the past year or more as I have spent time with Mother in the nursing home, I have finally learned to temper that passion. At least to a degree.

Proverbs have long expressed the belief that saying nothing is generally preferable to speaking.

The French famously wrote, "speech is too often not the art of concealing ... but of stifling and suspending thought."

In religious circles, silence has also been considered laudable. From the 14th century, Psalms of David, Rolle wrote, "Disciplyne of silence is goed." Wycliff's Bible (1382) includes the dictum, "Silence is maad in heuen (made in heaven)."

Most famously, perhaps, is a Swiss inscription which reads,

"Sprecifien ist silbern, Schweigen ist golden."

"Speech is silver, Silence is golden."

We have seen a great deal of change in Mother during the fifteen months since she first came to GVM. As the calendar moves forward, more of Mom's time is spent in veritable silence coupled with a wide-eyed, vacant stare which seems to have her looking at everything and nothing. There is no gold in this silence.

As a physician, when I first encountered this behavior my mind began to race in kneejerk fashion through a mental list of the differential diagnoses so as to discern a cause and possible treatment plan. Reality slowly reinforced the fact that there is nothing in the collective medical arsenal which could greatly improve her situation. This represents yet another cruel manifestation of her progressive disease.

I do still try to engage Mom in conversation when she goes into one of these trance-like states. Sometimes I am successful. More often, I am not.

A few months ago, however, I inexplicably took a turn onto that "road less travelled (by me)," electing to simply sit with Mother in silence.

I had learned it is true when people speak of silence being "deafening." At first, I would often find myself slowly being lulled into the mantra of the void, then just as suddenly I would awaken, acting on a natural and over-riding compulsion to engage her in conversation. But I soon confounded my natural instincts by stifling the impulse. This came as a shock to me.

Sitting silently at her side during these fugue-states, I was left to wonder if I was witness to an actual moment when some internal neurological wiring was being usurped; if she was suffering a small stroke; if she was in "micro-sleep" which has people sleeping with eyes wide open; or, if she was simply taking time to herself ~ a commodity in short supply in a nursing home ~ to collect her thoughts or mood.

Whatever the cause, I eventually found I could enjoy ~ if you will ~ the silence shared during these hours alone with Mom.

Perhaps I came to develop a better understanding and appreciation of the "majestic beauty" of silence written of by men greater than I. Perhaps Mom, in her silence, had goaded me to finally learn the literal and literary lessons from my callow youth; in particular, the adage which assured, "holding my tongue for one day; tomorrow how much clearer my purposes and duties will be."

I have slowly accepted the fate that awaits Mother. I have also learned to simply enjoy whatever we may share along the way. Whether she talks, laughs, or rests in complete detached silence, she and I are engaged in a "dialogue" that will surely live on in my heart forever.

Mom and I recently found ourselves alone again in her silence. Ten minutes soon became an hour ~ with nary a word spoken between us. Mom suddenly emerged from her trance. Turning to look directly into my eyes, she smiled and cradled my face in her small hand. After a moment, she softly said,

"You need to shave."

Her speech IS golden.

Comfort

During the first three months of her stay at GVM, Mom was seen in the Emergency Room and/or admitted to the hospital five times.

The reasons for the evaluations varied. The most consistent problem, however, was an increase in frequency of episodes when she would "pass out" after standing.

This problem was not new to Mother. She began to experience this while still at home, but the episodes, now occuring while under professional care at a nursing facility, necessitated a more thorough evaluation once a pattern was established.

She was hospitalized for the third time in October following yet another episode of fainting.

When you stand, gravity causes blood to pool in your legs. This results in a decrease in blood pressure ~ simply put ~ because there is less blood circulating back to your heart to pump. Under normal circumstances, special "baroreceptors" near your heart and in your carotid arteries "sense" this decrease in blood pressure. They then work to instantaneously counteract it by triggering your heart to beat faster, pumping more blood thereby stabilizing your blood pressure. Additionally, these receptors cause your peripheral blood vessels to narrow (constrict) thereby increasing the resistance to blood flow which, in turn, further adds to an increase in pressure. Got that? (I wouldn't blame you if you didn't.)

There are many medical situations which can disrupt a person's natural ability to compensate for low blood pressure. Parkinson's disease, unfortunately, is one such cause.

Parkinson's disease does not discriminate. It has the ability to affect any muscle group ~ including the muscular lining of arterial walls. When the normal process of arterial constriction and relaxation is hampered by this disease, a positional change (from seated to standing) can result in orthostatic or positional hypotension (low blood pressure).

It is this failure to adequately counteract for low blood pressure which caused Mother to pass out when attempting to get up from the bed.

She was seen in the hospital during the October stay by a cardiologist who went on to pronounce her heart "strong," and also made some adjustments to her medications aimed at increasing her blood pressure so as to forestall future events. To date, these interventions have been largely successful.

She was also seen by not one, but two neurologists. Unfortunately for Mother, their pronouncements and prescriptions were a bit of a shock. She was declared to be suffering from "End-Stage Parkinson's," was given "no more than six months to live," and both, independently, made the same recommendation:

Hospice.

I was not prepared for this.

The word comes from the Latin, "hospitium," which, when translated, comes to mean, "guesthouse." Apparently, it was originally described as a "place of shelter for weary and sick travelers returning from religious pilgramages." The modern hospice movement originated in London during the 1960's and was promoted as a "team approach to professional care giving."

Hospice came to the United States in the mid-1970's and now boasts some 3,000 plus programs across the country which offer comprehensive care.

It is designed to give supportive care to people in the final stage of a terminal illness. The focus of hospice care is on comfort and quality of life as opposed to traditional allopathic concerns for "curing" medical illnesses. The overaching goal is to, "offer a system which enables a patient to be comfortable and pain-free so they may live each day left to them fully."

All of these programs use a "multi-disciplinary" approach which includes the services of a physician, nurse, social worker, and clergy in providing care. Additional services may also include pain management; physical and occupational therapy; medical equipment and supplies; and even bereavement counseling.

As previously stated, hospice does NOT aim for a cure of a terminal illness but merely concentrates on providing comfort for any issue which may be germane to an individual's "admitting diagnosis." Outside of Mom's diagnosis of Parkinson's disease, hospice does treat potentially curable conditions such as pneumonia and bladder infections which might very well include brief hospital stays.

I personally feel both of these neurologists acted cavalierly when perfunctorily declaring Mom had no more than six months to live back in October of 2008. To be fair, I believe they were forced to rely on the totality of their professional experiences to make these judgements; there was very little objective information available to either of them.

And, I was guilty of asking the stupid question in the first place.

The fault in my thinking was not realizing they might actually offer up a reply. Yes, I understood Mother's health had clearly been declining over the past year ~ and the process had accelerated during her brief stay at GVM. Despite this, no one had dared make such a cold declaration ~ at least to my knowledge. I also know there was a part of me which accepted the six month window as a real possiblity.

So, while I do know it was an appropriate ~ albeit unanswerable ~ question to ask, I truly wish I had kept my big mouth shut.

Those six months have come and gone, soon to be replaced ~ perhaps ~ by yet another. One might consider it a small victory over the arrogance of physicians who once pretended at "playing God" by declaring a near date-certain for her demise.

Yes, there most certainly is a selfish part of me which is happy knowing Mom beat their odds. But this is countered by an even greater understanding that the woman we love continues to suffer and no longer lives any semblance of the life she once envisioned for herself.

Hospice or no hospice, there is NO comfort in this.