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.

Nursing Notes Excerpt

Tuesday, August 18, 2009 11:30 am

Dorothy's screaming out "AAAAHHHH!!" I ask her what's wrong & she says, "Oh nothing, just calling the birds!" :)

Four O'Clock

ime has a habit of slipping away once we settle into routines. This “truism” seemed to fail us during those first few weeks following Mom’s move into the nursing home. From my perspective, these represent some of the most challenging days of my life.

Prior to the move, dementia had wrecked havoc on Mother’s sensibilities to the extent that she convinced herself she would be better off moving to her own apartment rather than remain in the comfort of her home. Even though the painful decision to transfer Mom’s care to GVM had already been made, her personal decision to move seemed to make the process easier for everyone.

I doubt anyone was more shocked than I by the apparent ease with which she adapted to her new surroundings. Mom seemed to accept nearly every aspect of her new life with nary a complaint. There was the sudden lack of personal privacy as well as the institutional process of managing almost every aspect of her life from taking medications to scheduling her showers and meals. Mother endured each new intrusion with grace.

At least, for a while.

A few weeks after arriving, a new diagnosis was added to Mother’s problem list: Sundowner’s Syndrome.

It is not uncommon to see patients who become irritable or confused as a result of unfamiliar hospital settings or following anesthesia. This “hospital psychosis” is a well-documented constellation of symptoms that occurs appreciably beginning in the late afternoon and early evening hours. While this psychosis can affect any age group, Sundowner’s Syndrome is generally limited to the elderly.

Also called, “sundowning,” it is most often associated with the early stages of dementia but can also be present in mood or sleep disorders. Sufferers experience periods of extreme agitation and confusion beginning late in the day which can be manifested in irritability towards caregivers and nursing home staff. While previously felt to be related to altered “circadian rhythm” cycles, current studies point to other causes such as drug-drug interactions and stress directly related to lower cognitive functioning.

One theory: the constant mental process of “normal” living can become overwhelming. These elderly individuals seem to have too much incoming information which may overload their already restricted cognitive functions. This results in periods of irritability and negative thoughts.

This process is not felt to be willful, per se. But, there is some conscious level of “frustration” due to awareness by the sufferers who realize they can no longer adequately process incoming information.

Come three or four in the afternoon, everyone began to gird ourselves for whatever might come.

On a good day you might find yourself walking in perpetual circles through the various halls; while it wasn’t the circumambulation of the Ka’aba during the Hajj, it may very well have been as exhausting. It was never a matter of slowly walking alongside your elderly Mother – you had to work hard just to keep up.

She moved as if on a mission. You never knew where she was headed but her forward movement had an element of intent. You would often have to take hold of her sweater or jacket to prevent forward momentum from propelling her upper body unsafely ahead of her center of gravity. There was no stopping her.

And then there were the bad days.

She would often be resting quietly then suddenly, with the sweep of a single moment in time, leap from her bed and declare her intention to “get the hell out of here.” Moving quickly and frenetically about the room, she would gather up any and all possessions in her path, bundling them for the trip home. You would have to follow her about the room in an attempt to prevent her from hurting herself in the process; as soon as you made any effort which she felt might be contrary to her intention, you were immediately, “persona non grata.”

Alternatively, she would leap from her bed and begin some chore which had, by this time, become very difficult for her to complete. Washing and setting her hair is one example. Once she had the idea in her head she was a woman possessed. There were some days when a caregiver would be allowed to help, but, more often than not, she would beg to be left, “the hell alone.”

One might ask what could be wrong with allowing her to wash and set her hair. In an ideal world, the answer would be "nothing." But, her “voluntary” movements had become erratic; these “dyskinetic” movements posed a potential hazard to her. She might be standing at the mirror combing her hair then suddenly and inexplicably hit her head against a wall. Normal activities of daily living had become dangerous.

There were many days when most everyone felt woefully inadequate helping her through these hours. These episodes were frightening and frustrating for everyone.

Time, the occasional use of some medication for agitation, patience, as well as her ever-advancing medical condition have all but rendered this phenomenon an element of her/our past.

When taking into account the research regarding sundowning, it makes me extremely sad realizing her irritability and negativity may have originated with some awareness of the ongoing failure of her mental processes. How incredibly cruel the insult if she was truly aware of the ongoing assault against her own mind?

And all of us were helpless as we stood witness to her manifested frustrations. It was excruciatingly painful realizing we were incapable of assuaging any anger, pain, and sorrow.

Room 808

It might be said the final chapter of a love story was written Thursday, August 13, 2009.

It is a memoir of mutual devotion which began during childhood and endured for more than 75 years ~ 61 of those years in marriage.

For the past few months, Joseph had maintained an arduous and continuous vigil at the bedside of his wife, Josephine, as she struggled bravely in a losing battle for her life. Family members often begged him to take rest or to eat, but very little ~ short of force ~ would have cleaved him from her side.

Despite all of this, he was always quick with a smile, a pat on the back, and never once failed to ask, "How is your Mother doing?"

The entire family ~ their legacy ~ was at Joseph's side as his Josephine's ordeal came to an end; he would not have had it any other way.

"A wife is the joy of a man's heart." ~ from the Talmud

This could have been written with Joseph in mind; she not only seemed to be his "joy," but clearly held his heart in her hands.

While it seems their story's end was written Thursday, Josephine and Joseph understood the promise of much more to come.

I am standing upon the seashore.
A ship at my side spreads her white
sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength
and I stand and watch her until at length
she stands like a speck of white cloud
just where the sea and sky come
down to mingle with each other.

Then someone at my side says,

"There! She's gone."

Gone where?

Gone from my sight, that is all.
She is just as large in mast and hull and spar
as she was when she left my side,
and just as able to bear her load of living freight
to the place of destination.

Her diminished size is in me, not in her.
And just at that moment
when someone at my side says,
"There! She's gone."
There are other eyes watching her coming
and other voices ready to take up the glad shout,

"There! There she comes!"

Parable of Immortality ~ Henry Van Dyke

Sailing from this world into the life-eternal.

Room 803

Spend enough time in a nursing home and you will come to know -- even love -- a colorful cast of characters. Going to visit a family member or friend, a person can find himself with a stiff neck -- turning this way and that -- offering up "hellos" to the new friends you have come to know along the halls leading to your loved one's room.

My brother, Jim, arrived early Sunday morning to spend time with Mom. Completing his litany of greetings as he neared Mom's room, Jim passed Room 803 and noticed that Guy was still in bed; he is not a man who "sleeps in." Jim stopped and offered up his usual greeting; Guy responded in kind.

An hour later, Jim decided Mom might benefit from spending a little time outside among the flowers, enjoying the early morning sun and an unseasonably cool breeze. While heading out, they were passed by the blur of Guy's wheelchair as he headed in the same direction.

Sunday was no different from any other day. Guy was on the move.

Guy is 84 years old and "doesn't look a day over 65" -- whatever that means; age is relative, after all. While heart disease and a debilitating stroke have recently rendered him unable to walk, he has managed nicely.

Herodotus famously wrote of ancient couriers who allowed, "neither snow nor rain nor heat nor gloom of night," prevent them from swiftly completing their appointed rounds. While this may not accurately apply to modern-day mailmen, Guy is the living, breathing embodiment of this credo. From the moment he laid eyes on his Quantum 600 wheelchair, he has been of a singular mind -- nothing was going to prevent him from getting the hell out of "that" building. He wasted no time.

Guy's adventures are a constant source of entertainment at GVM -- the veritable "stuff" from which nursing home "legends are made."

Once free of the building, Guy effectively took ownership of the extensive properties surrounding the facility. Everyday after breakfast, Guy takes off through the front entrance then heads down a long, winding drive eventually arriving atop a summit known affectionately to many as, "Guy's Hill." I don't know how much time he spends up on his hill on any given day; I have seen him basking in the morning sun as well as the growing evening shadows; he ventures out in rain, sleet, or snow. He wants nothing more than to be free.

There is/are (a) gaggle(s) of geese that have taken up residence on his property. He apparently makes a daily tally of these large-(ly dirty) foul. At last count, there were 44 -- give or take a few errors in accounting. And recently, he was beside himself with excitement over the discovery of a beaver at work in one of his ponds; while he never personally saw it, he went to great lengths explaining the beaver's handiwork to anyone who would listen.

I first came to really learn about Guy through word of his exploits. Gossip around the nursing home spreads faster than any fire. I had previously heard several reports of the "renegade resident" who "constantly escapes from the building in his wheelchair and 'hides out' up on a hill." One day, similar gossip was enhanced by a report that the "same man" had been discovered upside-down -- with only his wheels visible to passers-by. (Guy was fine if not a little embarrassed.) The nursing home administration ultimately conceded the futility of discouraging his adventures but demanded he add an embarrassing orange "caution" flag to the back of his chair; he decorated their flag with a "skull and crossbones."

And, this is how it was on Sunday -- as Mom and my brother set out to enjoy the beautiful morning, Guy met them along the way to his hill. My brother's earlier impression had been wrong; "Guy looks great!" Always in the mood for a good conversation, Guy was eager to sit and talk but Mom suddenly asked to be returned to her room. Before heading their separate ways, Guy asked, "Are you going so soon?"

The irony is staggering; Guy passed away two hours later with his daughter at his side.

His death came as a complete shock.

I am grateful for the time I shared with this man. I don't know what experiences made up the other 83 years of his life before coming to GVM; I only know the man who lived two doors down from Mother these past thirteen months. We all knew him as a gentle giant of a man. We shared pizza (but, sadly, no beer) on Super Bowl Sunday; birthday cake this past April; made dinner reservations for him so that he might enjoy a nice dinner (and a lot of wine) with his daughter; watched as he unabashedly flirted with my sister; made fools of ourselves attempting to decipher the "greek" instructions for a "simple" TV remote; laughed together at the latest new joke his physical therapist had shared; brought him the daily newspaper.

Like so many other family members at GVM, Guy's daughter, Suzie, disrupted her own life in another city to be close to her father after he suffered a stroke and ultimately entered the nursing home. Shortly after his death, Suzie called to relay the sad news; she later confided that she would not have traded the experience for any reason because, "I got to fall in love all over again with this man -- my Father."

Guy did make the trek up to his hill that morning. Just like every other day, he had a place to go and geese to count. None could have predicted where his journeys would ultimately take him on Sunday, but we are somehow comforted knowing he now moves unencumbered. Free of the wheelchair at last, he is travelling on his terms. Guy is truly free.

When the Poet thought of "Those Who Were Truly Great," he finished his work with, "Born of the sun they traveled a short while towards the sun, and left the vivid air signed with their honor." These words come closest to expressing the respect I hold for my friend, Guy.

A new resident will eventually move into Room 803. Guy's name placard will be replaced with one bearing the name of the stranger. And with time, many of us will probably come to love this person as well. But that room -- it will never be anything more than, "Guy's Room," to me.

And, I will never pass your hill, Guy, without thinking of you and that silly flag. We are now left alone to wonder where your new adventure has taken you.

May the road rise up to meet you.
May the wind be always at your back.
May the sun shine upon your face;
the rain fall soft upon your fields
and until we meet again,
may God hold you in the palm of His hand.
(Gaelic Blessing)

Nursing Notes Excerpt

Her First Mother's Day

"The older I get, the more I see the power of that young woman, my mother." Sharon Olds

Sunday, August 2, 2009 (10:45 pm)

"Jeannie, I love you more than you'll ever know. I miss her.

I can't explain how precious you are to me."

Family Notes Excerpt

Tracy, a trusted aide, was in the room getting Mom ready for dinner and bed.

Mom was on the cusp of becoming agitated.

In an attempt to temper Mom's mood, I went on to relay a story to Tracy about one of Mom's favorite TV commercials.

Mom never failed to get weepy over an old Hallmark Cards commercial that actually reminded her of me. It portrayed a teacher walking, "the most beautiful little boy with freckles," down the hall to class. (Her choice of words; not mine.)

So, what was Mom's reaction to my retelling of that story?

"Do you want to make everyone sick?"

Tracy very happily hugged Mom adding, "I love you, Dorothy!"

Mary's Tender Mercy

Invariably, the question is, "Where is Mary M.?

"What time do you have?," comes the reply.

"Five o'clock."

"Oh, she is likely in Dorothy's room." Mary M. is "family."

I don't honestly remember when we first came to know Mary; I believe she began working at GVM roughly the same time Mom became a full-time resident. As with much of the staff who attended to Mother in those early days, I imagine Mary probably didn't know quite know what to make of our intense group of omnipresent family members.

I can hear Mary wondering aloud, "are they crazy?"

Mary was never supposed to work in a nursing home in the first place; her educational background is in accounting. But her father knew better -- she was meant to spend her days caring for others.

I haven't really put together all the pieces of the puzzle. How is it that she forfeited her love of accountancy in exchange for a career tending to the needs of sick, dying elderly residents at GVM?

Her father's prediction was correct. But could he possibly have known the career path he imagined for Mary would begin with his final days?

Mary has walked in our shoes. She was faced with the myriad tough decisions surrounding the impending death of her father. Nursing home or home care? The choices may seem cut and dry but there are innumerable intangibles that get in the way of an easy decision; it is a struggle between blind love for a loved one and the passions people cling to such as guilt and remorse.

In the end, Mary's family opted to care for him at home. It was a monumental undertaking but one she has never regretted; it was a gift. Her father died as he wished -- in the company of family.

Mary wears many "hats" at GVM. She not only dispenses medication to and cares for residents but also is charged with staffing and general ordinances. It is clearly not an amalgam of assignments best tasked to one person; she does the work of many. There are reasons for this: she is intelligent, dependable, responsible, and devoted. It cannot be easy balancing the varied duties -- and there are times when she must surely doubt her resolve -- but, in the end, she perseveres.

With her collective responsibilities, how is it that she came to be such a fixture in Mother's life? Simply put: She made time for Mom -- with a little nudging.

One of my brothers has come to refer to the private residence wing of GVM as, "Dorothy Scott Manor." He jokingly introduces himself to all unsuspecting incoming staff by first informing them they will have to become certified in order to work with Mom. (There is often an understandable look of bewilderment.) I don't know when or how it happened but Mary seems to have been one of the first staffers to make his cut; I think she was "grandfathered" into certification.

As the clock approaches five, Mary can almost certainly depend on hearing a few gentle (maybe, not so gentle) raps at her locked office door -- and window. (My personal belief is that she often wants nothing more than to escape our reach.) But, we are nothing if not dogged. Surely, she understands -- it isn't for us; rather, Mom has come to depend on her visits.

At the stroke of five, Mary can generally be counted on to arrive -- aided by another member of the staff -- to prepare Mom for the night ahead. It is not always easy. But it can often be entertaining.

The process begins by getting Mom up out of bed, wheeling her a few yards to a private bathroom then changing her into nightclothes. I should hasten to add that Mom has lost the governor over her thoughts with time; she pretty much says whatever comes to her mind. A family member is generally within hearing distance of these bathroom conversations; it almost never fails to make me laugh or smile. On more than one occasion, as Mary worked to get her into a nightgown, Mom has loudly declared, "Hey, I am NOT that kind of girl!" One never knows how she may react.

On these "bad" days Mom remains tight lipped after returning to bed; she can get agitated. Early on, as Mary tried to assuage these concerns, Mom finally responded with a demonstration so as to make her point. She outlined an imaginary box in the air then asked if Mary knew what it was. Mary was baffled. Mom went on to inform her, "this is my private space .... DO NOT ENTER THIS SPACE."

Generally speaking, Mary has a way with Mom. It may very well be they have shared experiences as women; Mom is most certainly outnumbered by the men in her life. It cannot be that simple.

Mary can feed Mother when everyone else has come close to giving up. And Mary can hold conversations with Mother I couldn't begin to initiate. They have an easy connection.

After it seems Mom has fallen to sleep, Mary will often take a seat and talk with whomever remains in the room; we have learned to never confuse the appearance of sleep in Mom with a lack of comprehension on her part. A week or so following a particular conversation between Mary and I regarding a family matter of hers, Mom called Mary over to her bed and proceeded to relay pointed, cogent advice regarding her daughter. Mary took the advice to heart.

I believe -- bad days aside -- Mary has become an important part of Mom's daily routine because they both have come to appreciate the simple joy of these visits; they both gain from the experiences they share. Mary does this on her time -- time she could be spending at home with her own family. Mary would be the first to point out, however, these residents are not simply names and room numbers to her. They have become members of her family as well. 

Mary's father knew his daughter; she is exactly where she needs to be.

The night always ends for the two of them with a private word from Mary whispered into Mom's ear.

At the door, Mary quietly adds, "Goodnight, Mom."

Learning Curve

July, 2008

I have no interest in making a sweeping indictment of or to impugn the hard work of many members of the staff at GVM; there are numerous people who work diligently and faithfully attending to the needs of every resident including Mother. With that being stated, however, I am compelled to write about the learning process we undertook when Mom became a full-time resident.

Some examples:

Medical questions/concerns that arise are eventually reported to a charge nurse who then faxes pertinent information to a resident's attending physician. It often takes a day or more for problems to be specifically addressed.

When these medical concerns are finally submitted to the physician, an on-site visit between the resident and his physician is generally not forthcoming. The physicians tend to rely on the vigilance and reports from the nursing staff of the facility -- the majority of nurses being, LPN's. The acuity of nurses to patients is reportedly 1:4. This is a blatant misrepresentation; on any given day, Mom's nurse is often the sole individual charged with overall responsibility for residents in two to three halls.

Once an attending physician has "addressed" a particular concern -- it may very well take 24 hours for any new medication or treatment to be initiated. While I do know of the existence of "emergency kits" of medication available on each hall, the supplies are not exhaustive.

There exists no in-house pharmacy. When medication requests are submitted to the contracted outside-pharmacy, orders are very often not dispensed correctly. Cipro 250 mg. dispensed vs. 500 mg. -- as ordered. Phenergan 50 mg. dispensed vs. 25 mg. -- as ordered. Worse, as in the case of an antibiotic (Ciprofloxacin) for Mother, the med techs proceeded to give the wrong medication for three days even as their own records clearly indicated an ordered dose at odds with the dispensed dose. It was only after we inquired as to the discrepancy that corrective action was taken.

To trivialize the use of "commonly prescribed" drugs like antibiotics or anti-nausea medication is dangerous. The choice of a drug and dosing generally takes into account an individual's size and age but must also include consideration for his/her general physical or mental state. Deviation from prescribed dosing can lead to serious untoward complications.

There is also considerable grace granted for the dispensing of medications in these facilities. A drug that is scheduled to be given at 8 AM may, technically, be given, "anytime from 7 AM to 9 AM." Drugs prescribed for Parkinson's disease are time-sensitive; there isn't much wiggle room for deviation from strict dosing schedules -- at least in Mother's case. While this particular issue was quickly and satisfactorily resolved -- I was hard-pressed to believe when told, "very few residents have rigid dosing requirements."

"All available staff report to the dining room," is a general announcement prior to meal services. Regardless of promises made to the contrary -- not to mention state guidelines -- there is often no staff available during these three hours of the day to assist residents who -- by way of choice or physical limitations -- do not take meals with the rest of the community.

I learned this the hard way one Sunday in July.

Mother had made the decision to take lunch in her room; she and I were happy for an opportunity to enjoy a meal together without the added distraction of the collective noise in the dining room. That was our plan.

Shortly after beginning her meal, however, the Heimlich maneuver became more than a mere abstraction for me.

I don't have it within me to describe -- adequately -- the terrifying seconds sitting immobile, staring at my mother -- as she stopped moving air, as her lips turned a ghostly blue, as her pupils dilated, and as she began to struggle violently to regain control. I was in total disbelief during those initial seconds; "Is this really happening?"

Throughout many years of training and practice I have been directly involved with resuscitating countless trauma patients in untold, varied life-threatening conditions. Working in such an environment leaves a mark on everyone.

For me, those experiences pale when judged alongside these frantic minutes at the nursing home when Mom was fighting for her life. Every aspect of the experience -- when responsibility for her survival landed squarely in my hands -- is seared into my psyche. The few minutes or so of unbridled terror are worthy of a lifetime of nightmares.

The Heimlich maneuver worked -- but I had never before been called upon to personally test its effectiveness. I distinctly remember seeing the offending small of piece of chicken that conspired to kill Mother -- looking at the innocuous, dislodged bit of protein realizing the power it had temporarily wielded.

It wasn't until later when Mom was safely back in bed recovering that the totality of the situation began to set in. I remembered I had been thinking to myself during the ordeal that, "Mom is dying and her death will be forever on my head;" her physician son, who had never before performed this maneuver, couldn't save her.

Absent the presence of a family member that afternoon, she would have surely died. Every member of the hall staff was gone. They had been summoned to the dining room to attend to the meal service.

I am a physician who practices in a very traditional hospital setting. If I didn't understand it before, the lesson had been learned: nursing homes are most definitely not hospitals. In the weeks and months ahead there was a great deal more learning to do. We could not afford to engage in a slow, steady process; our learning curve was accelerated.

Mom has most certainly never been alone since.

Miss Ruby

There is something intoxicating about the smell of yeast bread as it is baking; it instantly makes my mouth water.

Mrs. Hanlin was responsible for this. She came to us when Mother was ill and hospitalized for a long period of time; she cooked and cleaned for our family. She was apparently very good at both but her cleaning is NOT what I embraced. I distinctly remember the smell of her yeast bread dinner and cinnamon rolls as they were baking. Long after she had gone that sweet smell was forever etched in my memory.

In the days when I started first grade there seemed to be little concern for children walking to school -- everyone walked. Over time, I came to use those walks as a barometer to gauge how my day would go; an ideal day for me would have begun by walking into the bright light of a Spring morning -- a crisp chill hanging in the air. But, perfection was realized only when the sweet smell of yeast bread goodness permeated the breeze as I approached school. Everyone always knew when it was cinnamon roll day. For this reason, and more, the cafeteria ladies held a special place in my heart.

Miss Ruby worked her entire adult life as a cafeteria cook; she was one of the vaunted ladies entrusted with the secrets to making my only vice come to life. I generally carried my lunch to school but it didn't stop me from coveting the "fruits of her hard labors." I might have sold my soul to the devil for one of those rolls; as it is, I had to settle for potato chips as my only bargaining tool.

I don't know what brought Miss Ruby to GVM. I only know that one of my brothers immediately fell under her spell. It wasn't until I found out what she had done for a living that my interest was truly piqued; I decided I would do almost anything to gain access to her secrets.

I can write that she is almost 100 years of age, nearly blind, and has a wicked sweet tooth. My brother began to spoil Miss Ruby and a gaggle of her lady friends early on by bringing Tootsie Roll Pops almost everyday. It got so bad after a while that one of them would invariably lose her manners by blurting out, "What have you got for us today."

I honestly am not sure if Miss Ruby actually eats Tootsie Roll Pops -- or sells them on the black market. I am justified in writing that because the basket of her walker always has the look of a porcupine for all the Tootsie Roll Pops that stick out of it. I always ask if she has any left, to which she softly replies, "No, I don't think so." When I point out evidence to the contrary she expresses surprised innocence; I choose to believe she is a very cunning actress. She is also irresistible.

She is extremely proud of her days as a cafeteria cook and also speaks quite fondly of her myriad students; she is one of the lucky people who truly loved her work. Yes, she does have the secret recipe for those cinnamon rolls but always insists she doesn't know exactly where she stashed it. She is wickedly cunning. I make a mental note to push harder the next time or to corner one of her unsuspecting relatives.

An amazing woman; soft spoken, kind, reflective, funny, and adorable. She loves to talk.

Sadly, just shy of her 100th Birthday, Ruby died in the comfort of her own bed on July 5, 2009.

That afternoon was unsettling for me; I was pensive. I later looked around the nursing home and noticed nothing seemed to have changed; clocks were ticking, residents were eating their meals, and medications were being passed.

I have been around medicine long enough to know better but still the question surfaces. Why doesn't the world quake or stop when a life is taken? Why aren't we forced to stop and immediately take stock of a life lived and lost?

And then -- in the same moment -- my revery ended as I remembered that I had been asked to find someone to address a problem for Mom. This is what happens -- life happens.

That evening I walked down Ruby's hall and noticed her personal effects were still in the room -- as if she wasn't gone. In a corner stood her walker. And there they were -- jutting out of the basket were two sticks from those Tootsie Roll Pops. I couldn't help but smile.

I keep imagining her as the cafeteria lady from my childhood. The thousands of greetings she must have received over the years!

Hello, Miss Ruby!

Even though I never did get that recipe, I know I am a better person simply for having known her.

The sweet smell of yeast breads baking will forever return me to memories of Mrs. Hanlin and the halcyon days of my youth. It will now also bring me back to these days at GVM, when I came to know one of the cafeteria ladies who once held a secret key to my heart.

Goodbye, Miss Ruby!

Making Friends

Bertha W

It's hard enough dealing with the reality of seeing your own Mother living in a place such as this – a “long term care facility;” there is, afterall, only so much worry a person can assume.

Most of us set out to shower all our love and attention on Mom, but soon discovered there was also another insidious process at work – one that seemed to have a will of its own. Suddenly, we found ourselves taking on much more than we could have imagined.

It started with polite hellos in passing, later moving on to surface level banter. Depending upon personalities, it might very well have ended there. We were, after all, made up differently and there were so many factors at play. To my way of thinking, there was no right or wrong ~ people just needed to allow their personalities to carry them.

A few members of our family are prone to reaching out. It might simply have been that we are “people persons,” but I believe there was much more going on than this. There is a real need in this environment ~ beyond simple niceties ~ to share with others who are walking the same path. Even as members of our family moved in and out of this environment, spending as much time as possible with Mom, some of us came to be on a first-name basis with many residents and family members alike. This wasn't a conscious process – it simply happened.

I long ago came to the conclusion this may very well have constituted a coping mechanism. If we were to constantly dwell solely on Mother’s concerns it could have ~ and did at times ~ become overwhelming. Simplistically, I think there is often a process at work that “moves” some people to reach out; when people express an interest in someone or something else ~ putting aside our own selfish concerns for a moment ~ their own problems are somehow rendered less significant.

Whatever the silent motivation, some family members took to it with a passion. All of us ~ no matter how much time we spend at GVM ~ always return to the familiar faces of residents, family members, and staff. For someone who never wanted to step foot in any nursing home, I feel I have truly come a long way; I actually look forward to seeing many of these people ~ I am sincerely curious to know how they are doing or if there is anything new and exciting to share. To this end, we have all become an extended family of sorts. One of my brothers even knows the coffee tastes of some fifteen or more residents ~ whether they take sugar, cream, or thickener. There is comfort in this.

There is also, however, an extremely harsh reality ~ an unspoken but attendant risk ~ that comes with these relationships. Just as you form bonds with these residents and their families you are often dealt a sudden and bitter reminder:

As if ice water is being thrown on your face, you are taught ~ time and time again ~ most of your newfound friends have come to the nursing home to die.

"525,600 minutes"

July 7, 2008

I will never forget that day.

Mom was up early and dressed; she actually seemed to be excited. She didn’t understand.

I couldn’t do the work my brother’s were doing – it was impossible. I was a coward.

Instead, I opted to go with my cousin, Lou Ann, and sister-in-law, Linda, who had crafted plans to take Mom shoe shopping and then out to lunch. She didn’t understand.

We also took along the new cherry-red wheelchair Mother had been so excited to receive; it didn’t matter what it was -- it had been a gift from her “Sweetie.” The wheelchair had not yet become an essential fixture in her life; it was available. She didn’t understand.

We walked out of their home around 10:30 in the morning. She didn’t understand.

We shopped for shoes, and then went on to the Olive Garden sitting down for lunch. That is essentially all I did; I was not interested in food. The mood was somber; it was a wake of sorts. She didn’t understand.

At noon, as choreographed, after a few cell phone calls, we made our way to the van. I was physically ill by the thought of what was to come. I understood. Did I?

We drove past the boulevard leading to their home? Oh, my God! This is for real.

We drove another half-mile or so and then turned onto a property I had visited before in the final years of my Grandmother’s life. I remember thinking, again, “Oh, my God.” But Mom seemed fine; she was making plans and even a grocery list. She didn’t understand. Or did she? She had certainly spent more time here with her Mother than any of the rest of us; could those memories have faded as well?

My twin brother was in the circle drive – as planned; he was hurting – visibly -- but he was determined to do what was necessary for Mom. He was strong – or at least he acted the part. He understood.

We had arrived. Our life, as we knew it, changed in a moment.

I remember the sense of a weight seeming to push me back as we entered the doors; I didn’t want to be there under any circumstance. It was supposed to be for the best, right? I honestly did try to put on a brave face. It wasn’t easy.

Feeling numb and moving along unfamiliar hallways, I felt pulled – as if by some invisible rope – toward an uncertain reality; I was blindly following everyone’s lead.

Suddenly, there it was. Room 610. Worse was the card that hung beside the door which read, “Dorothy Scott.” I felt weak in the knees.

What my brother’s accomplished in the hours after we left the house that morning with Mom was miraculous. As if by magic, many of Mom’s favorite things had been transported to that room – it quite honestly already felt like a “home.” On seeing her favorite rocking chair, Mom took a seat with nary a complaint; she was alright. My brother’s had worked a miracle – at least from my point of view. By making this day – this transition -- easier for Mom, they had paved the way for the rest of us as well.

I was the weakest link in the chain that day. I had not prepared myself for this eventuality. Yes, it had been discussed over time but there was a part of me that had continued to push the thought aside for “another” day.

July 7, the day that had dawned just a few hours before, had brought more change than I could have imagined.

Before leaving the house with Mom that morning I had the opportunity to tell Bob what was on my mind. I assured him that while I was personally distraught by the blinding reality of the day, I didn’t want him to feel any guilt. Though my heart was breaking, I assured him that he was doing the right thing. He seemed strong but I suspect he was holding on by a thread.

Has it really been one year? It feels like a minute. It feels like a lifetime.

Mom understands. Mom doesn’t understand. It is all true.

One year.

“525,600 minutes … moments so dear … how do you measure, measure a year?”

“Seasons of Love” from the musical, “Rent.”

"Dr. Scott"

I was not old enough to understand, but I did.

I couldn't yet spell the word “cat” but instinctively knew what “divorce” meant. I was told it was for the best. I do remember the moment I first heard the word from my father; beyond that, I have no memories – good or bad. I was simply too young.

Mother met and later was remarried to a man named, “Dr. Scott.” That is how we were introduced.

He was very different from our own father in many respects. That was a fact; it wasn’t a good thing or a bad thing. They were simply two very different people.

The name stuck – an unfortunate thing for him. I can now imagine the pregnant pauses after friends were introduced to them as, “Mom and Dr. Scott.” Many years later he truly sat us down and asked that we quit the moniker, “Dr. Scott,” for something -- any other name of our choosing. For me, this was simply his name – no less so than Dorothy is Dorothy, Jeff is Jeff, or Max is Max. But for him, it was a title for work -- not to be used by family. Finally speaking to me about this “name problem” fifteen years after they married, I came to understand the embarrassment it may have caused them over time. But, I will have to admit that it wasn’t easy for me to change; I have often wondered what he would have done had I ultimately decided to call him, "Ralph?"

Bob, as most of us call him now, has been very good for Mom – and vice-versa. It had been said of the two of them that they don’t take a breath without first consulting each other. It had been a true partnership.

He has an abiding respect for Mother. They have given each other everything they ever needed or wanted. And, while their extended family has seemed important to them, it may very well be said that if a dire situation was foisted on them, they could easily be completely content alone – together -- in a world of their own.

They recently celebrated their wedding anniversary. It was bittersweet.

They are now both very different people than when they married, and Mother seems to be fading from him with every waking day. Being a private, quiet, and introspective man, I once decided to brave asking him how it must feel for him to watch Mom – his partner for all these years -- suffer as she does. Quietly, he replied that he is slowly losing the one person in the world who means the most to him – the very person with whom he has now spent a veritable lifetime making decisions. He is now, figuratively, on his own.

Tomorrow, July 7, marks the one year anniversary of what was easily the most difficult decision ever made during their life together. A decision that certainly pertained to Mom – but one he had to make on his own.

Dementia

De-men-tia (di-men-shuh) - noun Psychiatry. Severe impairment or loss of intellectual capacity and personality integration, due to the loss of or damage to neurons in the brain.

Believe me when I write that Parkinson’s disease is a great offender. It makes victims of everyone it touches – patients and families, alike.

Studying Parkinson’s disease in medical school was basically a process. I learned what was required to pass my exams as well as gaining a baseline facility at recognizing the rudiments of diagnosis and treatment. It was assumed that I would probably not be required to know much more about the disease.

I could not have been more wrong.

In the years following her diagnosis, as we finally came to accept Parkinson’s as a permanent factor in Mom’s life, we were then asked to grapple with yet another unwelcome complication – the onset of dementia.

Technically, dementia is a condition which results in gradual loss of brain function; it presents with a decline in cognitive and intellectual function. In addition to memory loss, confusion, and problems with speech and understanding, dementia can also bring about changes in personality and behavior resulting in an increased reliance on others for daily activities.

It isn’t a disease so much as a constellation of symptoms which derives from a variety of causes.

Dementia only occurs in about 20% of Parkinson’s patients; in these patients, Parkinson’s disease Dementia (PDD) generally lags at least 10 to 15 years behind the original diagnosis of Parkinson’s.

Sure enough. As if on schedule, dementia gradually reared its ugly head in the tenth year or so following Mom's diagnosis.

Commonly voiced statement, “Oh, your Mother has OLDTIMERS!”

Once and for all: WRONG. Wrong on more than one level.

1. All dementia is NOT Alzheimer’s; conversely, all Alzheimer’s IS (a form of) dementia.

2. It is “ALZHEIMER’S,” not “OLDTIMERS.” (I wish I had a nickel .... )

Please understand that this attempt to describe dementia is not intended to be all encompassing; I am merely presenting an overview.

I have had a great deal of difficulty coming to terms with the fact that the Mother I know and love is slipping away in piecemeal fashion. The diminution of her physical and mental faculties in the last six months is staggering. A “good” day has now become relative; everyday has an element of “bad.”

This is our reality. For myself, I accept the facts, begrudgingly, but don’t ask me to like it.

Currently, Mom generally (and gratefully) seems to know who I am by sight when with her, but I have occasionally also been referred to as Billy, Mark, Jimmy, Ed, George, or, even Max – as in the dog.

I honestly do try very hard to find humor in moments like this -- without laughter I truly don’t know how I would survive.

When the laughter fades, however, there is generally a moment -- a pause followed by a “sigh” -- as I again remember that the laughter comes at an incalculable expense.

I miss the Mother I knew and love.

And, I also love the Mother who no longer fully knows me.