Mom's Garden

Our Last "First"

2012-01-12T15:45:00.000-08:00

Friday, January 14, 2011

One year. Is itpossible?

Tomorrow morning a mass will be said at therequest of a dear friend in memory of our mother, Dorothy Leigh Scott, whopassed away last year on that date.

Through the long hours of the preceding day into thestill dark of that cold winter morning, we, her children, many friends andstaff of the nursing home, crowded into her room, resolute in our convictionthat she would not die alone. And, so it wasthat at three minutes until four in the morning she peacefully took her last breath, uplifted by thepower of the blessings, prayers and tears of those who truly loved and surrounded Mother at her bedside.

One year later, the ache of her death is still very mucha part of me.

I am told it was stolidly mentioned to at least onefriend in the minutes immediately following her death that it was acceptable to “dance ajig,” presumably, at the thought of her no longer suffering. I didn’t understand the comment any better then than now.

While I am trulyhappy she no longer struggles from the ravages of her dread life withParkinson’s Disease, I also freely admit to being just selfish enough to longfor the gentle touch of her small hands to my cheeks as she kissed me goodnightor to see the smile that lit up her face when we returned the next day.

No, there were no jigs to be danced on that cold Januarymorning nor any time since. Not by thisson.

While it may seem inconceivable that I might very wellmiss her more with each passing day, I can also write that the pain has paradoxically and mercifully been somehow rendered lesssevere with time. But the word “less” isrelative; I doubt I will ever be free of that pain altogether. I don’t believe it is possible.

As I have struggled mightily attempting to adjust to my“new normal” these past twelve months, there are two truths of which I am now more certainthan ever before:

The love between a Mother and her child is unyielding andimmutable;

No matter the passage of time, this love is forever.

The pain is, too.

Eulogy for Nani

2011-10-19T12:53:00.000-07:00

For those who do not know me, my name is Rob Marvin, andI am happy to count myself as one of Virginia’s friends ~ and quite possibly,her favorite.

~~~~~~~~~~

It’s my hope that Monday, October 17, 2011 will beremembered as the day when a loving family and many friends gathered indefiance of convention to celebrate Mother’s Day … at the time and place of theirchoosing … in God’s house … at His table … and later, at the cemetery onhallowed ground.

I will personally never forget this incarnation of Mother’sDay when we came together to honor the enduring love of a mother andgrandmother, and for others, the life of a friend and neighbor, Virginia.

~~~~~~~~~~

As I sat to think about what I would say today, one imageof Virginia was foremost in my mind: Shewas seated at the head of a large table surrounded by family and friendsoffering up an insanely large amountof food.

How had I come to sit at this table?

~~~~~~~~~~

It must have been difficult for Virginia to sit idle, watchingas her three children bore the responsibility of caring for their ailing fatherover two and one-half years as he languished in a nursing home.

And while she could do nothing to ease their burden, shewas surely proud to see her children acting on the example she had passed alongto them over many years:

Familyis everything.

During this time, our families were living parallel liveswithin the same nursing home; three doors down a common hall from Dominic, our Motherwas living out her final days. And, aswith Virginia’s children, we had long ago learned the importance of family inour lives.
When my twin brother, Jim, recently asked Charlie why itwas that Virginia had taken to the two of us, his reply was simple: “Mom didn’t say much but she watched peopleand took in everything. She watched youcare for your Mother and for my Dad.”

As months became years, all of us, the children ofVirginia and Dorothy, were bound by a shared affection for our beloved parents aswe did the only thing we knew how to do: we cared for them.

The love of family isthe tie that binds all of us. Virginiarespected this in her children … and in my twin brother and me in turn.

~~~~~~~~~~

Since being diagnosed with an incurable brain malignancylittle more than four weeks ago, no one left Virginia’s side without beingimpressed by the living contradiction embodied by this first-generationItalian-American. Increasingly frail andweakened ~ she remained strong in spirit; eyes hampered by age ~ her visionremained crystal clear; and, in a world of increasingly dizzying complexity ~she projected herself as a selfless woman of quiet practicality and grace.

When the time came for the physicians, nurses, socialworkers and family to make plans for her future, it was clear there would belittle allowance made for debate:

Virginia was going home;to her home of 54 years where she raised her children and their children, tothe kitchen where so much food was made and shared, and to the familiarity andcomfort of her own bed.

Always the Mother, even at 83, Lucille, Joe and Charlie werestill children in her eyes ~ even as they navigate through middle age. It is as if her motherly eyes wouldn’t allowher to see the children grown ~ as if adulthood was the singular province of amother.

Perhaps it is.

Or, at least, so it seemed, until the morning of October12^th ~ when, with Charlie, his dog Lulu as well as a trusted friendand caregiver, Anita, at her side, Virginia slipped quietly into that long, goodnight.

~~~~~~~~~~

Having lost their father only five short months ago,Virginia’s children are now learning, as did my twin-brother and I this pastJanuary, that the death of a mother is unique ~ it seems to affect us in waysfar different from when our father’s die.

I believe it marks an irrevocable severance with the past~ as if cutting the umbilical cord that binds our affections, making usgrounded in the world.

And, unlike with our father’s, we are intimately andinextricably linked to our mother’s ~ as flesh of their flesh, and blood oftheir blood.

Yes. Theirchildhood died along with Virginia this past week; but, like her, they are tobe born again.

~~~~~~~~~~

His holiness, the late Pope Paul VI once remarked as tothe relationship between Mother’s and their children when he observed,

“Every mother is like Moses. She does not enter the promise land but prepares a world she will not see.”

Virginia bore two healthy sons and one daughter, and nearlylived to celebrate her 84^th birthday ~ which is tomorrow. She lived her life preparing Lucille, Joe andCharlie as well as her four grandchildren for an earthly land of promise she will no longer see ~ at least not fromTHIS vantage point.

But, her Lord assures us that she is now in the heavenly Promised Land alongside her belovedfamily who had gone on before her.

It is the contradiction of our humanity, the resurrection,and our place in it.

~~~~~~~~~~

I will end this Mother’s Day card of sorts, in prayerfulreverence of Virginia, my mother, Dorothy, and for all those mentioned silentlywithin your hearts:

“The love of a mother is a veil … of a softer light …between the heart and our Heavenly Father.”

Virginia Ann Cervello is now fully in the light of our HeavenlyFather by the redemption freely given by His Son.

And, through the promise of the resurrection, I speak formany when I pray for the day when we will no longer simply be our Mother’s sonsor daughters, but united as children of God.

Sweetdreams, Virginia.

Mother's Day

2011-05-08T17:44:00.000-07:00

Below I have posted a link to the video shot this morning at the Jameson Family gravesite where Mother is now buried.

The music heard throughout is a recording of the bagpipe introit "Amazing Grace" performed at Mother's Memorial Service in January and again at her Committal Service in late April.

The Gerber daisies sitting atop her grave are but a few of the artificial flowers which were eventually suspended from the ceiling directly over Mother's nursing home bed when she was no longer able to walk and, thus, to work in her gardens. She truly loved these flowers ~ artificial or not.

The beautiful flowers surrounding the central family marker were planted by our sister in the days leading up to Mother's Committal Service. After scrubbing each of the family markers clean, our sister wanted nothing less than to make certain another beautiful garden ~ of sorts ~ awaited Mother at her final resting place alongside four generations of her family.

The gardener made assurances the flowers would survive but a week; Sister was prepared for this eventuality.

No one could have been more surprised, however, to arrive at Mother's burial site to discover that her pansies had not only survived ~ they are thriving!

I don't know how anyone could have doubted this outcome;

Surely, Mother had a hand in all of this!

Happy Mother's Day, Mom!

We love and miss you ... to the moon and back!

Should you go first and we remain

to walk the road alone,

we'll live in memory's Garden Mom,

with the happy days we've known.

In Spring we'll wait for roses red,

when faded, the lilacs blue.

In early Fall when brown leaves fall

we'll catch a glimpse of you.

We'll hear your voice, we'll see your smile,

though blindly we may grope,

The memory of your helping hand

will buoy us with hope.

Should you go first and we remain,

one thing we'll have you do:

Walk slowly down that long long path,

for someday we'll follow you.

We want to know each step you take,

so we may take the same.

For someday down that lonely road

you'll hear us calling your name.

(Borrowed from "Should You Go First" ~ A Rowsell)

http://youtu.be/ikxfo3qGNTw

Eighteen Hours

2011-01-27T12:38:00.000-08:00

I ran through the snowdrifts as fast as my legs would allow.

The interregnum of the prior nine days had been all but too much to bear; the days apart weighed heavily on me.

But I abandoned all the heartache as I plowed through fresh snow blanketing an invisible but well-known path.

Rounding a bend, I made out the silhouette of my twin brother standing under an arcade beyond the head of the trail; he, too, had been anxiously awaiting my return.

“That’s really nice of him to welcome me back!” was my only thought.

But just as we began a short walk along the colonnade to the entrance of the nursing home, my brother stopped, turned abruptly to me and then said,

“Mom is not doing well … she’s not doing well at all.”

A veil of denial immediately enveloped me as I struggled to catch my breath and my legs buckled under the sheer weight of his words.

It was as if I had been punched in the stomach.

It was as if I had been driving a speeding car and then forced to come to a complete stop and reverse directions in the same instant.

Life – as I knew it – was about to be altered irrevocably.

My brain immediately became awash in the panoply of human emotions as well as thoughts too disparate to grasp. But in the midst of all the mental chaos, an eight word sentence – a fateful harbinger spoken to a trusted friend nine days earlier – took hold, repeating itself in an endless loop time and again within my head; it would continue for the next eighteen hours … and beyond.

~~~~~~~~~~~~~~~~~~~~

“Everyone dies.”

I learned this lesson as a child. All of us do. But to a child, death is merely an abstraction; in the mind of a child, we are all immortal.

Over the years as Mother’s health declined, I will also admit to occasionally fantasizing about how I would react when Death finally came for her.

I don’t believe there is anything strange about this. How many among us has not contemplated such thoughts? Consciously or not, do not the exigencies of Life force each of us to become mentally prepared for nearly all eventualities?

But even with the benefit of nearly five years of introspective preparation for Mother’s death, my brother’s words that morning as we walked along the colonade, forced me to face – head on – an unwelcomed revision of the ill-understood lesson from my callow youth,

There is no good way to prepare;

Mother’s die, too.

~~~~~~~~~~~~~~~~~~~~

While finally making our way into the nursing home, I do remember being conscious of how quickly the excitement of the morning had turned to trepidation and fear while simultaneously being surprised by an unanticipated calm – or numbness – that came over me. It could very well have been denial; I don’t know. After all, Mother had weathered many storms over the past two and one-half years.

As we reached her room, however, the protective instincts evaporated as quickly as they had emerged. Even though I desperately needed to personally “lay eyes” on Mother, I was not at all certain I was prepared to deal with the probability of this harsh new reality.

As I opened her door, I instinctively knew Mother’s current situation was different from all prior scares; she was surrounded by too many people, both expected and unexpected.

“This is not good.” was my only thought.

I quickly made my way through the crush of uncomfortably silent nurses, aides and family members to come face to face with Mom.

I was shocked.

Whereas nine days before I had sat laughing as Mother interacted cogently with two very surprised hospice nurses – both of whom later went on to make a glowing report, the woman in front of me that Thursday morning was nearly unrecognizable; Mother was unresponsive with her mouth agape, laboring under the burden of oxygen deprivation; her oxygen debt was outwardly manifested by the most foreign and hideous of watery rattles imaginable, presumably precipitated by either an oddly rapid onset of pneumonia or a silent but profound cardiac event.

I acknowledged the truth in that first instant – Mother’s life was rapidly coming to an end.

~~~~~~~~~~~~~~~~~~~~

My recollections of the ensuing eighteen hours are a blur of activity and people moving into and out of Mother’s room.

The “comfort care” medications, Roxanol and Intensol, were administered; hospice nurses came and went according to shifts; a family conference with the hospice chaplain; tears and anguished cries; family members, friends and fellow residents visited; more tears and laughter erupted sporadically as everyone spoke of Mother’s life; dinner was unexpectedly provided by the beloved family members of another resident; hugs – lots of hugs; a young, devoted private duty aide returned twice – on her own time – to continue her dedicated service to a much loved charge; more Roxanol; more Intensol; more tears; more laughter; more tears; more hand holding; silent conversations with Mom; and a hard working nursing home aide, despite completing his shift at 11 pm, who was determined to remain at Mother’s side, caring for her as well as his “second family” until …

Mom received a final dose of Roxanol.

Twenty minutes later, with her daughter, two sons, and a surrogate “family” of friends at her side, Mother was assured by each of us in turn that we would “be alright” – it was “ok” for her to “go.”

She then took one last breath and never relinquished it.

Mother’s long, wonderful life and decade’s long struggle with Parkinson’s disease came to an end with her death just before 4:00 am on Friday, January 14, 2011.

That last breath and her death were not peaceful, at least as far as I was concerned; the reality of both came at me with the force of a tidal wave; I immediately felt myself drowning in the waters of a very deep and painful private sorrow.

In that instant, I was forced to acknowledge that one of two people who had always been integral to my life was now gone – forever.

I will never again hear her laughing through tears as she delivered the punch line of a favorite joke.

I will never again hear her perky morning or afternoon greeting, “Hi, Sweetie!”

I will never again see her beautiful smile.

I will never again receive the gift of her kisses or feel the incredible strength of her tiny hand taking a firm grasp of my own.

I will never again hear her assure me with an, “I love you, Bobby.”

And, I will never again experience the intensity of her eyes locking with mine – as if peering into my soul.

No.

At that moment, her death became all too real; the promised separation could not be undone; her death was absolute.

And just as she was mercifully cut loose from the moorings of a long and blessed life ~ impaired, in the end, by debilitating infirmities ~ a part of me most surely died as well.

But even while no longer whole, I also knew that I would grieve and ultimately recover in a manner best suited for me.

And please forgive me if I ask that no one offer a recipe for grief, complete with certain ingredients and results; I will find my own way given time.

Life has taught me that Death is a mystery and is loathe to provide answers; alternatively, would any certain answer magically render the sting of Mother’s loss and our loneliness less painful?

No.

Unanswerable questions are a part of life.

~~~~~~~~~~~~~~~~~~~~

To this day, I still am haunted by the eight words spoken nine days earlier to a trusted friend after leaving the nursing home to the abyss of an imposed uncertain return,

“Mother will not be alive when I return.”

The Gift of Time

2010-12-08T22:52:00.000-08:00

Mom

Lately, I don't have many thoughts about Mother without also thinking of a little boy named, Jax.

In the midst of the early morning phone call, I immediately set aside a block of time that same Saturday afternoon to speak with the young couple. The two of them had every reason to be concerned.

I also made the conscious decision to meet Rachel, then twenty-five weeks pregnant, and her husband, Marcus, in a less formal setting; another sterile, impersonal medical facility was surely the last place either of them wanted to be.

Rachel’s recent uterine sonogram had raised at least one red flag. The subsequent echocardiogram of their nascent son’s heart provided definitive evidence that all initial concerns had been warranted; their developing son was afflicted with one of the most complicated and challenging congenital cardiac anomalies, Hypoplastic Left Heart Syndrome. By contacting me, Rachel and Marcus had hoped I might better describe both the constellation of defects associated with the syndrome as well as outlining a general roadmap for eventual treatment if their son was fortunate enough to survive beyond delivery.

The beautiful young couple was joined by her cousin, a second year medical student who brought an armload of the very same Netter Atlases of Anatomy that will become familiar to Marcus when entering medical school next fall. From the outset, the three seemed realistically mindful of the troublesome ramifications of the diagnosis while also maintaining their youthful optimism and demonstrating the requisite determination to meet the challenge head on.

With our meeting completed, I remember leaving feeling buoyed by their obvious strength, genuine expressions of faith, confident in a wellspring of support from family and friends, and decidedly humbled by their remarkable maturity in the face of this great uncertainty.

Rachel and Marcus were girding themselves to deal with whatever might come.

Three days later, however, I received another sobering message from Marcus who informed me of Rachel's amniocentesis results. The test revealed that her unborn son was faced with an even more daunting diagnosis, Trisomy 18, otherwise known as "Edward's Syndrome."

The news came as an immediate shock to my senses; it was one of those moments of surprise that often has you sensing a wave of electricity passing along the length of your spine.

With the duplication of but one seemingly insignificant strand of DNA that might mirror even a fraction of the 18th chromosome, their child’s fate was all but sealed.

Fifty percent of those born with this syndrome die within a week of birth.

~~~~~~~~~~~~~~~~~~~~

JLH

On November 29, 2010, Jax Lee Hennon came into this world on his terms.

And what of his little heart?

The walnut-sized muscle was beating.

Despite any of the outward signs of imperfection brought upon by the genetic syndrome, the young couple looked at their second son and immediately declared him to be "perfect."

~~~~~~~~~~~~~~~~~~~~

After twenty minutes holding her swaddled boy, Rachel was informed his pulse was rapidly growing more faint. Not wanting to deprive Marcus of intimately sharing some of these precious moments, Rachel relinquished their son, Jax, to his father's anxious arms. The memory of this moment prompted Marcus to later write of, “the life he would never lead that flashed through his Daddy’s eyes.”

“The first fall; the first snowman; T-Ball; High School; curfews; sending him off to College; meeting his wife; holding his first child; helping him fix a leaky faucet … as well as about 14,000 hugs along the way.”

"My son. My beautiful son! I Love You! I will always love you!"

“I was weeping and crying … my body was fatigued from the stress I was feeling from the tension of crying so hard. I noticed through the wells of salty water on my eyelids that I had been dripping tears on Jax. If he couldn't see or hear, maybe Jax felt my love through those tears as they washed over his weak little body."

Forty-five minutes after bounding prematurely into this world, Jax's little heart finally gave out.

Marcus went on to also write,

“Our son was now where we could not follow. We had so desperately held on to him, prayed for him to stay with us, and anxiously fought against his leaving. On the other side of time his Creator, grandpa, and two great-grandparents were patiently waiting … Jax had come to do what he was created for. His part here on earth was now done. Our capacity to love expanded beyond measure, the value of mankind became ever clearer, and the love of God triumphed again. Jax’s heart beat for forty-five minutes, but for the rest of time when we think of Jax's life, we will also hear the whispers of God's good grace.”

~~~~~~~~~~~~~~~~~~~~

Reflections of Jax and his family are now intertwined with thoughts of Mother as she moves ever closer to her final days.

What I wouldn’t give for the opportunity to ask our late grandmother of the joy and elation she felt when ushering Mom into her life. As expressed by Rachel and Marcus, did Grandmother also deem Mother to be a perfect baby girl?

What I wouldn’t give for the opportunity to ask our late grandmother of all the unrecorded moments of Mother’s young life. Just as Marcus wrote, are the images of that which was experienced and yet unseen by my eyes over the course of her younger life somehow less important to me now?

While certainly not challenged with the genetics that would dramatically foreshorten her life, Mother’s frail little body does conspire against her today no less so than his genome guaranteed, from the moment of conception, nothing more than a brief sojourn for him here on this earth.

I do understand that none is guaranteed even a single moment of this precious commodity we call “life.”

But even as I declare an acceptance of this reality, I also continue to struggle as I seek to find answers to a good many unanswerable questions:

Why would nature allow an innocent like Jax to be conceived with the burden of potent and insurmountable odds levied against him; why would a loving God craft this beautiful boy using an unsustainable genetic paradigm?

Why would nature allow innocents like Mother to suffer under the yoke of needlessly horrific medical burdens? Why would a loving God allow some to pass away without pain during their sleep while countless others are made to endure years of cruel, inglorious decline?

Our family has spent the past few years bearing witness to Mother's painfully incremental physical and mental demise; it is an experience I would wish upon no one. But even as I have watched her life slowly ebb over time, I also struggle with recent decisions that would have the family no longer allow for the treatment of “treatable” conditions in the days or weeks ahead.

Like Marcus, I, too, have tried desperately to cling to any hope that Mother might remain with us for a while longer; after learning of the fateful treatment decision, my immediate thought was that neither she nor her loved ones should be deprived of even a moment of shared time.

“Take Rachel and Marcus as an example,” arguing to myself many times over, “surely they would have moved heaven and earth for but one additional minute with their son, Jax!”

Ten days after learning of the difficult care decision for Mother, aided by the benefit of that time to reflect on my feelings, I am now equally convinced Rachel, Marcus and their surviving son, Jace, might also be quick to add:

You need to be thankful for the gift of time you have been allowed to share at your Mother’s side.

But your Mother suffers now, no less so than did Jax during the final few minutes of his all too brief life.

No matter the difference in time allotted to each of us with loved ones, might it also be selfish not to grant your Mother leave to wash away the burden of mortal suffering and to move on to the promise of higher ground?

~~~~~~~~~~~~~~~~~~~~

Jax Lee Hennon. He lived, died, and offered valuable lessons within the span of but a single hour.

I will remain forever humbled by the dignity and courage exemplified by this young child and his loving family.

I also pray that when I am called upon one day to reflect on the life of our beautiful Mother, I, too, will be blessed with the guidance of the whispers of God’s good grace.

Marcus and JLH

http://www.youtube.com/watch?v=ada0867fbVM

Their remarkable and brave video.

Captured Life

2010-11-15T19:47:00.000-08:00

Monday, November 15, 2010

Hospice Nurse: "Who are the people in this picture, Dorothy?"

Mom: "My babies!"

Mother continues to defy the odds.

Room 802

2010-10-27T10:03:00.000-07:00

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

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

~~~~~~~~~~~~~~~~~~~~

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

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

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

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

“What’s going on?”

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

~~~~~~~~~~~~~~~~~~~~

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

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

~~~~~~~~~~~~~~~~~~~~

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

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

Aletha most certainly did NOT. Or so I thought.

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

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

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

~~~~~~~~~~~~~~~~~~~~

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

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

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

~~~~~~~~~~~~~~~~~~~~

“What’s going on?”

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

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

Aletha’s life was drawing to a close.

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

I respectfully disagree.

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

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

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

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

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

~~~~~~~~~~~~~~~~~~~~

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

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

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

The experience was profound.

~~~~~~~~~~~~~~~~~~~~

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

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

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

Letting Go

2010-10-06T07:02:00.000-07:00

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

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

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

Those were very different times.

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

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

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

~~~~~~~~~~~~~~~~~~~~

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

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

Twelve hours passed.

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

~~~~~~~~~~~~~~~~~~~~

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

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

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

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

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

My illusion.

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

And her disease is nothing short of cruel.

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

“For the better?”

I don’t know.

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

~~~~~~~~~~~~~~~~~~~~

My Reality.

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

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

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

Of what?

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

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

That person may very well be me.

~~~~~~~~~~~~~~~~~~~~

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

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

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

Goodbye.

String With No Kite

2010-09-14T12:16:00.000-07:00

I have been waking up the past few nights in a cold sweat.

Mother has been visiting my dreams; she is young and beautiful again, exactly as I remember her from my childhood. She then moves toward me and stares directly into my eyes while painfully asserting,

“I wanted to go home and you wouldn’t let me.”

I don’t sleep following these dreams. Instead, I spend time trying to convince myself she is wrong; after all, I hadn’t actually had a say in the matter. But, I am painfully aware she has never liked being in the nursing home ~ at least when she was able to fully process and articulate such thoughts.

Eventually I convince myself she must, on some level, understand that making the fateful decision was extremely traumatic for every member of our family.

There simply was no choice.

This might seem incredible but, to my recollection, I don’t believe I have ever had a dream specifically involving Mother, especially odd given our intense experiences over the past two years and more. If there is any one factor that might explain her appearing to me in my sleep these past few days, it is likely because we have all been riding a non-stop roller coaster of emotions these past few days.

~~~~~~~~~~~~~~~~~~~~

Many have fallen prey recently to a particularly vicious respiratory bug that has been blazing a trail across the country. I can personally vouch for its sting. While not certain if I have ever had the flu, I am now convinced my experience with this unwelcomed intruder could not be far removed.

As with any outbreak, the elderly, who are particularly vulnerable to virulent assaults, have not been spared; many residents in Mother’s nursing home have suffered the full wrath of this virus. And while most are recovering slowly, a couple of these elderly residents have been recently felled.

Unfortunately, this is the scenario which has generated so much concern for Mother these past few days.

Rarely requiring even over-the-counter pain relievers, Mom suddenly began complaining of daily non-specific body aches late last week. Over the next couple of days, she then began to demonstrate some nominal upper airway congestion. No problem. We used the available drugs at our disposal so as to dry up the secretions and all seemed to be going well.

Until Sunday night.

Just as one of my brothers arrived from out of town, Mom began to sound as though she was awash in fluid within her lungs. Our sister, getting off of the phone after trying to speak with Mother, was horrified by what she had heard; the only words Sister could utter were, “She is drowning!"

This is a noise you never want to hear.

Yet another drug was ordered to further manage the secretions, Hospice was put on alert, and Mom very quickly withdrew further into her own private world.

No matter how long we have anticipated a dramatic decline in her condition, no matter how hard friends have worked to assuage our collective concerns, the oft-told axiom holds true ~ at least for me:

“You are never prepared.”

~~~~~~~~~~~~~~~~~~~~

“It’s just that when I go into that room, I am now left not knowing what to do. I can’t even tell if she even knows I am here!"

Even before the dread virus entered our lives, attempting to wrest Mother even further from our grasp, we had all been dealing with the reality of her worsening dementia.

Many a friend has done his/her best to convince all of us that we have been doing everything for Mother “just by being there for her!”

My mind understands this.

But, my heart can't.

Intellectually, I grasp what has been happening to Mother over time, but the only indelible image I have in my head is not the face of the elderly woman lying unresponsive in the nursing home bed but an idyllic image of the younger woman who raised all of us.

“Mother doesn’t know who I am. She is just lying there with her eyes closed or, worse, wide open with nothing but a vacant look on her face. This is the woman who was everything to me when I was a little boy. But, who am I to her now?”

I can’t adequately express just how hard it is to look on as someone you truly love ~ like this woman who actually still resembles our Mother ~ who has lost so much of what made her the person you knew.

A thousand thoughts keep swirling through my head.

Dad did it right. He drove home, went to bed after a great dinner with Mylla, Uncle Jim and Kathy, and never woke up.

While the aftermath of that experience proved incredibly painful, I am convinced it is a far worse fate watching as someone you love dies ever so slowly from a progressive degenerative disease compounded by the twisted effects of dementia.

Nature allows for this double jeopardy; suffering two deaths is a cruel fate.

“Relationships are made of a multitude of invisible things” such as memories, shared experiences, hopes and fears. But when a person slowly disappears with dementia, family members and friends are left alone. It has been likened to “holding a string with no kite.”

A person might work hard to sustain himself after these losses, but the “invisible stuff” that ultimately makes up valued relationships becomes lost forever.

Exactly like a splinter under your skin. Even unseen, that splinter is no less painful.

~~~~~~~~~~~~~~~~~~~~

As yet another sad attempt has been made by one unwelcome Hospice nurse to cavalierly declare Mother’s life to be at an end, I am here to reiterate my firm belief that we ~ none of us ~ has a say in the matter.

The virus will run its course but I suspect Mother and the hand of God will ultimately be the guardians of her fate; after all, no one can deny Mom has proven, time and time again, to have an amazingly resilient soul.

If asked, I would admit to being somewhat guilty of not wanting to let go. I would love to have the Mother I once knew back ~ more than you can possibly imagine. This is still the woman who signed my report cards. This is still the woman who sent me to school, fed and clothed, every day. This is the woman who made certain there was food on the table at night as well as orchestrating ridiculously memorable Thanksgiving, Birthday and holiday celebrations.

I do most certainly want her back.

But, of course I know the fantasy will never come to pass.

In the meantime, her family will do its level best to take comfort in all of the little things. If given another opportunity, I won’t bemoan the fact that Mother can no longer fully enjoy a favorite song as she was capable of doing even a month ago; instead, I will work hard to simply enjoy watching one of her toes move to the rhythm of a “Rhapsody on a Theme by Paganini.”

We are all committed to do whatever it takes to fill whatever is left of her life with happiness and joy.

And in the end, when she has made her final decision, I will honor her wishes by surrendering to the greatest act of love available to everyone … by letting her go.

Maybe then, our eternally vibrant and beautiful young Mother will no longer haunt my dreams; perhaps, she will come and carry her youngest son on a walk to visit with her father in the middle of that beautiful field of flowers she has spoken of before.

I would surely welcome such a dream.

Time and time again.

Capturing Life

2010-08-31T13:46:00.000-07:00

It's well documented that many Native American’s wanted nothing to do with the white man, Edward Curtis, who would eventually became famous for his stunning collection of photographs immortalizing Indian tribes beginning during the latter years of the nineteenth century.

Generations would speak of long dead relatives who were truly afraid of what his camera might bring to them; they feared his “magical boxes” might literally capture a part of them, if not steal their souls altogether. As a result, many Indians wanted no part of a folly which might prevent them from travelling peacefully on to the “other world” by holding their souls captive on image-laden panes of glass or cellulose.

Time has an uncanny way of changing views about most anything.

Walk into any home of a descendant of these noble tribesmen, and I am confident one would see numerous images of family members ~ living and dead ~ covering walls or desktops. And I would venture a certain bet that most also carry a cell phone equipped with the necessary technology to instantly transmit both still and video images far and wide.

As her life ebbs to a close, my family has set out to unearth as many beloved ~ as well as previously unseen ~ photographs of Mother accumulated over a lifetime. And, as I sit here reflecting over a group of these priceless images, I can’t help but think of the fears expressed by the ancients of the Wild West, and I begin to understand.

~~~~~~~~~~~~~~~~~~~~

I don’t believe I had ever seen this picture until last year. To my knowledge, this is the earliest picture on record of Mother, sitting alongside her beloved brother, Jim.

She could have been no more than a toddler; she surely had not a care in the world. While the “Rules of Behavior” established by her parents might have made a slight dent in her public persona, for the most part, she seems to have been totally unrestrained with the excitement and joy of living for the moment, spending time with her family and a curious man with lights, a box, and a silly toy.

“This isn’t something we do every day!"

~~~~~~~~~~~~~~~~~~~~

This picture of Mother in early childhood speaks volumes. Born at the onset of the depression, Mother was raised during those difficult times that demanded much of everyone, including children. As with most children, I doubt she was keenly aware of the serious challenges facing her family and nation that may have affected her daily existence.

There is a seriousness about her in this photograph.

At this time, parents still demanded a great deal from their children when it came to deportment; rest assured Mother was never allowed to run lose screaming in a public setting; failing that, I can only imagine the serious consequences that would have been had.

“Children were meant to be seen and not heard.”

My guess is that the seriousness of this picture, however, has more to do with her sewing.

Mother’s passion for toiling with her hands has never known any bounds; her fascination and love of sewing during childhood would eventually expand to include knitting, gardening as introduced to her by her grandfather, and, in later years, cooking.

While she steadfastly refused to ever acknowledge praise, she was very skilled at all of them.

It is little wonder why I was once (correctly) accused of hiding Mother’s apple pie; to my mind, it was inconceivable to me that any of my more pedestrian siblings might come close to truly appreciating the God-given wonder that was her Apple Pie. Purely out of reverence, I did what I had to do.

The many gifts, wrought of her own hands, would bring great joy to Mother ~ and many others ~ for decades to come.

~~~~~~~~~~~~~~~~~~~~

In today’s vernacular, Mom would be labeled a “Tween” in this photo. Taken in advance of her twelfth birthday, Mother was clearly coming into her own.

At the time of this photo, the Great Depression was soon to be eclipsed and later vanquished when America was finally forced out of self-imposed isolation into the worldwide conflagration of WWII.

Despite the continued challenges at home and abroad, I see a young girl/woman who was full of optimism, daring to envision a future with limitless potential.

Her life was surely centered on her family but now included friendships, school, tepid attempts at independence, and ... dare I say ... boys?

Knowing my Mother, I would have bet, “Not.”

Mom has never suffered the foolish antics of boys well; I should know.

~~~~~~~~~~~~~~~~~~~~

By the time this picture was taken, we are left to assume that many young men didn’t bother asking if Mom was indeed interested; one can only imagine the extent to which many a suitor might have gone while attempting to win her attention.

This picture, presumably taken while in college, eventually represents a true find.

My sister was so excited when describing it to me over the phone one evening that I was confident she surely must have exaggerated its potential.

But, perhaps owing to my own personal bias, my sister had been absolutely correct.

Our future Mother was a knockout.

~~~~~~~~~~~~~~~~~~~~

A gaggle of four elderly women recently stopped by Mother’s room while I was visiting. They had all played bridge together for years and, merely by coincidence, learned that Mother was now living in the same nursing home where one of the four was recovering from a hip replacement.

On seeing Mother, I could tell that each of them was immediately taken aback. While no one ever fails to still speak of Mom’s natural beauty and flawless skin, the woman sleeping in that bed was clearly not the vibrant person they had come to know ~ or, perhaps, even wanted to see.

I quickly grabbed a framed picture of Mother from ten years ago and handed it to them. To my amazement, they all became extremely animated when they exclaimed, “This is our Dorothy. Oh, she is so beautiful ... and such a bridge player you have never seen!”

I was ultimately struck how their hoped-for reunion was accomplished only after seeing the woman in the picture from a decade ago; the woman named “Dorothy” asleep in that bed seemed merely to be an abstraction.

~~~~~~~~~~~~~~~~~~~~

While examining a good many pictures today, my thoughts suddenly turned to the stories of the Native Americans who were so afraid of the potential for a camera to steal spirits.

But, isn't "capturing" the spirit of a person, at least figuratively, exactly what photographs were intended to do?

To remind all of us of the joy and excitement captured forever in a photograph of our future Mothers as toddlers?

To remind all of us of the first glimpse of steely determination captured forever in a photograph of our future Mothers as they learned the lessons of childhood?

To remind all of us of the promising signs of wonderment and awe captured forever in a photograph of our future Mothers as they began taking their first tentative steps into adulthood?

To remind all of us of the youth, beauty, and vigor captured forever in the photographs of these wonderful women who would soon complete the cycle of life, becoming our mothers?

Just as Mother’s friends would have preferred to be reunited with the “Dorothy” they had come to know and love over many years, all of her children would welcome any opportunity to take a magical step back in time. But, such a dream will surely never come to pass.

My brother has busied himself over the last year or two with his digital SLR camera taking pictures whenever he visits with Mother. I will admit that when I hear the automatic succession of clicks produced by the camera, an odd feeling often settles over me.

I become a bit uncomfortable, I believe, because I am not sure if Mom and he are both aware of what exactly he is doing. Mom isn’t blind to her condition, and then, again, neither is my brother. But, I just can’t help but wonder if both of them understand his vain attempt to “capture” as many of the waning moments of her life that are quickly passing by.

It almost seems to be an act of desperation.

But, to what end?

Unlike the fears expressed by the Native Americans when Edward Curtis appeared with his camera, my brother clearly holds neither the power nor interest in preventing her spirit from moving on to the “other world.”

He does, however, intend to take every opportunity to capture as much of the beauty, love, spirit, joy and determination she continues, in her own way, to exhibit most every day.

Momento Mori

2010-07-18T05:59:00.000-07:00

“She has changed a lot since the last time I saw her.”

For some reason, Linda’s words immediately threw me off balance. I have been listening to quite a few medical professionals coldly discuss Mother’s condition for the past two weeks, but this aide’s words struck a discordant chord with me. It then suddenly dawned on me as I looked again at Mother …

I have been in denial. Or, at least, in part.

That’s alright isn’t it? I am her son, after all. No one would expect me to see all the changes coming to Mother clearly; I’m not an objective observer. And … no … I am not so blind I haven’t recognized the changes of recent months ~ I’m not completely shut off from reality.

But, there was something so simple, honest, and unaligned about her words that made me stop for a moment and think; in the end, it seems hers was the one authentic voice I needed that allowed me to confront the truth that Mother’s life is surely fading away.

~~~~~~~~~~

Mother has been under the care of hospice for almost two years. During the intervening time, we have all witnessed many horrific changes that have come to her. My response to anyone who asks is that Mom continues on a downward physical spiral but that we do enjoy even the increasingly transitory benefits of “ups” that come (with downs) along the way. We all try to take every measure of joy from these good moments while simultaneously maintaining a firm grasp on a realistic understanding of her condition as well as her prospects for longevity.

Time is not on her side

Over the twenty months or so since Mother was introduced to hospice, our family has been informed by care providers that her death has been imminent no less than two times ~ perhaps three. Every time these pronouncements have been made, family members were left to struggle with an impending “reality” which has long been “assured.” To date, each of these prognostications has been proven false and wantonly premature.

How does this happen?

“Hospice kept talking about the quality of my father’s life. My father, even though he was not able to walk around and talk to people, certainly got a huge grin on his face whenever he saw my children,” the woman said. “And that was a couple times a week. He still had joy in his life, and who had the right to take that away?”

This represents but one woman’s final account of her father’s death; suffering with Parkinson’s for many years, he died after only thirteen days in Hospice.

Since the Hospice movement first made inroads within the United States during the 1970’s, these organizations have faithfully served more than a million patients at the end of their lives by providing a wide range of services which include the management of pain and physical symptoms as well as psycho-social concerns.

Unlike this woman, many families who have previously engaged hospice would gladly sing the praises of their personal experiences ~ especially as they related to hospice helping them with difficult circumstances when traditional medical practices seemed to fail them. But, since the 2005 controversial, court-imposed starving death of Terri Schiavo, reports have increased dramatically speaking to the alarming growth of a very dark side of the hospice movement known as “terminal sedation.”

~~~~~~~~~~

Stephen Connor, Vice President of Research and International Affairs for the National Hospice and Palliative Care Organization, is on the record stating, “Hospice neither seeks to hasten nor prolong dying.” “Any family engaging the services of Hospice needs to know, from the onset, who is in charge, what protocols are routinely followed, and where a particular group stands on the important issues of food, fluid, and the practice of ‘terminal sedation.’”

Food and Water

Connor stated his organization’s standard for medically administered food and hydration is that “people have a right to decide whether they want those interventions or not. And a decision about whether they should have them or not resides with the patient, usually made in the context of a family system. Families ought to decide if they want it or don’t want it, and those wishes should be respected.”

Mr. Connor also went on to add that hospice does allow for the withdrawal of food and hydration, even when the patient is not in immediate danger of death, keeping in mind that individual hospice programs vary in their policies with regard to medical nutrition and hydration. Some go so far to as not allow patients to have intravenous fluids or feeding tubes, as an example, while others may opt to permit their use.

Former hospice nurse, Ron Panzer, agrees that hospice is “a wonderful service if done with integrity and morality. But since Schiavo’s death in March of 2005, he has heard from an increasingly vocal group of patients, families and caregivers who are raising grave concerns about their hospice care ranging from overmedication to the limitation or refusal of food and water.

Panzer, who now is employed as a home health care nurse, is not alone when stating his belief that hospice groups DO now increasingly engage in the practice of hastening death while fighting almost every attempt to prolong life. “The current tendency is to interfere at almost every step in ordinary care.” “They’ll pull the rug out from under a patient by limiting food, removing adequate hydration and essential medications, as well as refusing to provide treatment for easily treated infections.”

Terminal Sedation

Some bioethicists and physicians have proposed “terminal sedation” as a legal, ethical alternative to assisted suicide and euthanasia.

Terminal sedation is defined as the “deliberate termination of awareness for relief of intractable pain when specific pain-relieving protocols or interventions prove ineffective.” Essential components of terminal sedation also include withdrawal of most, if not all, treatment for medical disorders; limiting fluids and some, if not all, foods ~ all so that death occurs as soon as possible.”

With an alarming reported increase in frequency over the past five years, patients enrolled by Hospice are dying as a result of the implementation of terminal sedation. Cloak the process any way one might choose, but the ugly truth behind terminal sedation is that death is ultimately achieved by circulatory collapse brought about by a lack of adequate hydration.

Mandatory subsistent hydration has long been considered a standing order for critical care physicians who treat the terminally ill; any notion of withholding hydration as the process of death ensues is generally considered unconscionable. In the setting of “terminal sedation,” potent sedatives are also employed to mask the very real symptoms of iatrogenic (induced) suffering brought on by the limitation of fluids, the resultant dehydration, and the inevitable circulatory collapse.

Those who support terminal sedation view this as an “innovative” way of getting around the “sticky” problem of the euthanasia movement’s general inability to convince the voting public and legislatures to enact assisted suicide laws. So, increasingly, terminal sedation is being incorporated into the practices of hospice and other end-of-life programs even though, as pointed out by author Brian Johnston, euthanasia supporters openly admit that “terminal sedation is tantamount to euthanasia or, at least, a “slow” kind of euthanasia.”

It is generally believed that terminal sedation is not a “rarely used option of last resort” as many of its supporters maintain. The current reported prevalence of terminal sedation ranges wildly from 3% to 52% in terminally ill patients. But, when one stops to reflect on the unknown incidence of “terminating awareness” ~ or to put it bluntly, “ensuring unawareness” ~ calculating the use of terminal sedation as a form of “comfort care” may very well be approaching epidemic proportions, even outside the realm of the hospice movement.

It should also be noted that some physicians who otherwise condemn “assisted suicide” actually embrace the notion of terminal sedation as an “ethical alternative.” Dr. Robert Kingsbury, Director of Sister’s of St. Mary Catholic hospice in St. Louis, wrote recently in support of terminal sedation calling it “comforting and critical for patients who are profoundly fearful of terrible suffering at the end of life.” He went further to reject the generally held medical view that withdrawal of food and water results in undue suffering.

To my way of thinking, the evolution of terminal sedation and its incorporation into the practices of hospice proves that proponents of euthanasia are nothing if not creative and persistent. There are many people who are convinced that tolerating even a “little bit of deliberate death” will eventually afford them control at the end of their own lives. But if a growing culture of death is allowed to continue seducing even well-meaning patients, families and medical professionals into making death decisions that are based on the problems of health care cost containment, stressed and overburdened caregivers, as well as fear of suffering or diminished quality of life rather than following the traditional principles of “not causing or hastening death,” we are all ultimately at serious risk of being compassionately rationalized to the notion of death.

~~~~~~~~~~

Each of us, unfortunately, has but one final debt to pay for the privilege of living this life; the joy of viewing the beauty of another sunset or the wonder at the moment of the birth of a child each carries with them the seldom considered cost of the death each one of us will eventually owe (momento mori). While none of us is ever guaranteed another moment of life, time and circumstances point to the undeniable fact that Mother’s days are certainly numbered.

The image of that grieving woman’s father who was only capable of smiling a “huge grin” every time he saw his beloved grandchildren haunts me. I choose to believe, as did she, there must have truly been joy at the heart of his smile, even at the very moment a biased observer declared his life to be at an end.

Mother recently looked at my sister and declared no less than three times, “I don’t want to die.” What was my sister to think?

Mother looked at a brother and made a request for the joy of a summer strawberry; when he returned with his store bought harvest of berries, her words and smile spoke volumes, “Ohhh … they are delicious!” What was my brother to think?

Mother looked at me, adjusted my hat and shirt, and then admonished me not to be gone for long because, “I will miss you.” What was I to think?

I’ll tell you.

Hospice does have a place in Mother’s life as she approaches her final days; I whole heartedly welcome the services hospice was initially intended to provide both to Mother and her family. Our situation being as it is, I have absolutely no say in the matter ~ nor would I want the burden of such responsibility. But if I were given an opportunity to simply be heard on the matter of terminal sedation, I would state, unequivocally, I have no use for any organized process that might serve to make a calculated, capricious or dispassionate decision as to Mother's fate.

While it represents simply one son’s opinion, this is where I would choose to draw the line.

Allow Mother all the days or hours she is due. Give everyone, including Mom, the opportunity to enjoy even the smallest wonder each of those days or hours has the potential to bring.

Enjoy the gray-blue intensity of her eyes as they bore into your soul.

Live vicariously as she revels in the simple pleasure of a strawberry ~ not to mention, chocolate.

Sit, listen, and allow yourself to become captivated by her rambling conversations. Then watch the fluid movement of her hands as she sews an invisible dress from her memory of years gone by.

Oh, and lest I forget to mention ...

You don’t want to miss a Mother's smile.

730 Days

2010-07-07T11:44:00.000-07:00

"But what minutes! Count them by sensation, and not by calendars, and each moment is a day." (Benjamin Disraeli)

Meaning no disrespect to Mr. Disraeli, my calendar forces me to remember that two years have passed since Mother walked through the doors of the nursing home. Is it possible? 730 days. They came and went without permission; time "truly seems to be the lone thief unchecked by any law." (Napolean I)

Memories come to me, not as streaming videos, but in the form of frozen images ~ like photographs suspended in time. We have all been fortunate to spend considerable time these past two years accumulating cherished images of Mom that may serve to carry us through the difficult days ahead.

~~~~~~~~~~

Time alone with Mother is often hard to come by. Invariably, other family members, friends and nursing staff shuffle in and out of her room making demands, small and large, of her time. Every so often the stars seem to align, however, placing each of us in that proverbial “right place and time,” granting an opportunity to be alone with Mom while she is alert and conversant.

One night will probably always stand out for me.

My family had accepted the invitation to eat dinner with our cousins; while I enjoy a good “Taco Tuesday” as much as the next guy, for some inexplicable reason I chose to stay behind with Mom. I will always be happy I did.

After we finished dinner in her room, Mom began a familiar slow boil towards agitation. She wanted her family at her side and, if that didn’t materialize soon, she was sure to voice a well-worn demand for me to immediately take her home. Ultimately, I convinced her not to consider such a move until her other children returned from dinner. In exchange for her cooperation, Mom made but two demands: (1.) Ice Cream, and (2.) Michael Buble’s “new music” had to go.

The iPod was then set to play Barber’s, “Adagio for Strings.”

In an instant, her entire mood changed.

Gone was any sign of agitation or assured talk of walking the hallways to the front door and beyond. Instead, she seemed to settle into the comfort of the bed and began quietly working her tiny hands through processes she had repeated a thousand times over in her former life; without recipe, visible spices or pans, Mom was again cooking dinner for her children who would soon be coming home.

Her hands are much smaller than I remember; while this could be a failure of my memory it is more than likely a physical wasting wrought by time and disease. Regardless, there remains a beauty, strength and fluidity in her movements. As she continued to reach effortlessly into cabinets from some distant past, I am confident she knew exactly where everything was supposed to be. This was ballet.

She was also in the mood to talk.

I am not altogether sure Mom’s eyesight isn’t failing. But she sees plenty. Even if only viewing the memories of her mind’s eye, Mom seems to create threads of conversation based on what she sees and these images apparently drive her thoughts. One need also understand that moments of cogent thought come in waves for Mom, most often mingled with random meanderings. Some days are certainly better than others; these two hours of conversation alone with Mom reduced me to tears more than once.

~~~~~~~~~~

She spoke of the many people who are coming her way. She was concerned she might not be able to, “feed and clothe all of them.” When I asked if she knew why they are coming, she replied with a simple, “Yes.”

~~~~~~~~~~

As she continued cooking, she noticed that in the midst of the group she could make out the image of her beloved father and, presumably, a dog named “Zippy.” When I asked what her father was doing, she told me that, “he is moving slowly.” While she was genuinely excited about seeing her “Daddy,” there also seemed to be some reticence in her reply.

~~~~~~~~~~

When she eventually spoke of my sister, Mom’s face was suddenly relieved of all tension as she smiled a well known smile. Turning her head to me, she then locked her eyes and soul with mine for the first time that evening while stating unequivocally, “I never knew anything about love until my girl came into my life.” “My Jeannie. My beautiful little girl.”

~~~~~~~~~~

Thoughts eventually turned again to her father. Only this time she decided to write him a letter; she insisted I find some paper and a pen. Mom hadn’t written her famous daily lists in more than a year, but she took the pad and pen and held them both in her familiar left-handed manner developed over a lifetime. In the end, only the word “Dad” was legible among random threads of scribble, but even that single word resembled nothing of her familiar script. When I asked what she had written, she said, “Daddy. Walk slowly ... I’m not ready.”

~~~~~~~~~~

“Will you set me free?” She said it over and over again. Cupping her small right hand to my face, she again engaged my eyes and implored me to set her free. I don’t know what she meant. She has so long begged to go home but home may now hold a very different place in her mind.

~~~~~~~~~~

“I want all of my boys to lift me and carry me home.”

~~~~~~~~~~

My family eventually returned to the nursing home with the ice cream that had been part of our original bargain. As they each settled in alongside Mother’s bed to eat their sundaes, there was nothing I could do but leave the room. The emotions of the evening had run strong; I was spent.

The last thing she had told me before they entered the room took me to an entirely different place:

“When Daddy comes for me, I want to walk through a field of petunias until I reach the edge. And when we get there, I want to return to the center of the field.”

“Why?” I asked.

She looked at me, again, before answering,

“I will be home.”

Last Dance

2010-06-15T12:42:00.000-07:00

I looked at Paul as he went through the motions of the morning and couldn't help wonder what he was thinking. There is no way I can yet understand how he felt.

~~~~~~~~~~

Imagine...

... a progressive disease has robbed you of the very essence of your being. Indeed, every semblance of the life you now enjoy ~ not to mention, the dreams envisioned for your "golden years" ~ have been quashed. Instead of trips planned to visit family and friends, foreign principalities or even a local grocery store, you one day find yourself in a strange, if not, foreboding place. Adding one last insult to injury, you are confined to a wheelchair, robbed of what may well have been the last vestige of any control over your life.

Where are you?

The place into which you have landed is foreign, yet somehow familiar. There is some vague similarity to the sights, smells and pace of hospitals previously visited but there also remains something that is simply ... different.

You soon realize the place is devoid of the normal, comfortable sounds of home ~ no children laughing and squealing while at play, no dogs barking, no water boiling over a stove, no televised football, no music, and not even the curiously familiar sounds of a furnace or dishwasher at work.

Yet, there is a cacophony that percolates through every corridor of the place; it also seems it will never stop.

Call lights blink and "buzz," aides noisily transport metal carts heavy with the smell of food along uncarpeted halls; invisible, unanswerable telephones ring; televisions blare uncontrollably; and, sundry voices ~ not family ~ cry for attention.

"No," you are certain, "this most definitely doesn't feel like home."

Given enough time, you will awaken to a dawning realization the life you once cherished is past.

And, true to the unsettling promise of Thomas Wolf, you eventually understand, "you can't go home again."

~~~~~~~~~~

Mother made this same unhappy transition to a new life within a nursing home two years ago, July 7. Oddly, the intervening years since that somber summer day passed with the "blink of an eye" while also managing to feel like an eternity. I recently came across photographs taken when she first arrived, and found myself shocked by the change that has been visited upon Mother since arriving at GVM. The woman who spends most of her days confined to a bed in Room 807 bears little resemblance to our Mother who, some seven hundred days ago, walked into the nursing home on her own steam. Now confined to a wheel chair, Mother will surely never walk ~ or dance ~ again.

~~~~~~~~~~

One December weekend, I made a decision to bring my portable Bose stereo system to the nursing home. My initial intent was to provide an alternative diversion for Mother who spends most days bored within the isolation of her room. At noon, as a private duty aide arrived to sit with Mom for a few hours, I packed up my "music" and headed for the front door. Having befriended many residents over time, however, I stopped by the dining hall to greet a few friends and fetch coffee. I was almost immediately struck by the din within the dining room; hearing only the sounds of low murmurs as well as the metallic clank of silverware on china, the dining room ~ in the midst of a holiday season ~ was nothing short of oppressive. Not needing permission, I unpacked the Bose, started my iPod and activated a playlist of holiday music.

The effect was nearly instantaneous.

The pall over the room lifted. Most smiled. Many began moving their feet uncontrollably. Some laughed as others cried. And, while a few residents eventually began to sing, others raised their hands overhead in rhythm to the music...

... and one...

Lena, at 95, had been living in the nursing home for many years. Most days it was hard to get even a single syllable response out of her; while she was most always attentive to welcoming "hellos," she rarely offered much in return. Her beloved son, Paul, who had been attending to her daily concerns for years, was understandably one of the few people with whom she would routinely interact but now those moments were becoming rarer with time.

Until that December afternoon...

Lena clearly discovered a wellspring of renewed life within the music that afternoon. This seems to be what happens with most people when exposed to music they truly love. If a person happens onto the classical music listened to by the parents of their youth, the popular music of a bygone era, or even a particularly sentimental favorite holiday song ~ if it was embraced by a person long ago, she will most certainly welcome it with renewed fervor on hearing it again.

Listening to the music that day, Lena's entire countenance suddenly changed. She sat up in her chair, lifted her head, smiled beautifully at Paul and then ~ unexpectedly ~ held out a tiny hand to him. Paul instinctively understood ~ it was not simply a gesture but a request.

Taking a firm hold of Lena's weakened hands, Paul gingerly lifted his frail Mother from the cuirass of her wheelchair,

and then ... they danced.

Over the next few minutes, the entire dining hall was transfixed by what they saw; other family members, residents, and staff watched, applauded and cheered as Paul took the opportunity to share a December dance with his Mother ~ temporarily awakened from a slumber by the effects of the God given wonder that is music.

~~~~~~~~~~

Yesterday, at the base of a gently sloping hillside, Lena was laid to rest, her grave adorned with dozens of pink and white roses.

I looked at Paul as he went through the motions of the morning and couldn’t help wonder what he was thinking. There is no way I can yet understand how he felt.

At the conclusion of the service, Paul, eyes brimming with tears, came to thank me for attending the commemoration of Lena’s life.

And as he walked away, Paul suddenly stopped, turned again to me, and smiled a knowing smile. Since that December afternoon so long ago, he has never failed to remind me of the “last dance” shared with his Mother. It was a moment none present will soon forget ~ nor was it a dance family members will ever have an opportunity to share with our own Mother.

Lena and Paul danced for all of us that day.

I understood the gratitude behind the smile on his face yesterday; he need not have spoken another word.

Room 806

2010-04-22T13:23:00.000-07:00

It is an iconic memory from my youth.

Walking outside, I was met by a beautifully bright, cool Spring morning, the air cleansed with the freshness of an overnight rain. I found Mother exactly as I had expected; kneeling on the ground, quietly working one of her many gardens.

As I began to speak, Mother looked up and, putting a finger to her mouth, silently encouraged me to take time to listen to a dove as it cooed.

After a moment, Mother smiled and, as if sharing a confidence, revealed she liked to mark her calendar every year with the date she first heard the call of a dove.

By a turn of good fortune, I had come upon Mother at the exact moment she celebrated an annual, sacred moment; this is when I learned of the special communion she shared with her “crocus birds” ~ the doves, her birds of early Spring.

~ ~ ~ ~ ~ ~ ~

When the gentle cooing of a mourning dove from a bird clock hanging on the wall in Room 806 sounded for the second time last Friday, another child was also fortunate to be at her mother’s side ~ this time, as the woman took a final breath.

“If only I had wings like a dove that I might fly away and find rest.” ~ Psalm 55:6

Being a devoutly religious woman, I can’t help believe Mabel would have found significance in the call of a mourning dove at the very moment of her death ~ that such symbolism had been placed in her family’s path to convey a message upon which they could focus in the hours, days and weeks to come.

Mabel would probably want them to look upon the dove as a potent reminder of the importance of peace in their lives. She would want them to share in her own belief that peace, as symbolized by the dove, will not only work to quiet their troubled minds but will also allow them to find renewal in the silence. And through the stillness inherent to silence, she would want them to fully appreciate the simple blessing and importance of a life well-lived.

It should also be noted that at the moment of Mabel’s death, after the dove had finished its mournful lament, the bird clock stopped working altogether.

The significance seems profound:

Just as I had been fortunate to share a special moment with Mother and her “crocus birds” many years ago at the advent of Spring, Mabel’s daughter was truly blessed to be at her Mother’s side as the dove cooed, witness to the most sacred moment of Mabel’s life as she moved on to another existence that will have her knowing nothing of the boundaries of time.

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message ‘She is dead.’
Put crepe bows round the white necks of public doves,
Let the traffic policemen wear black cotton gloves.

She was our North, our South, our East and West,
Our working week and Sunday rest,
Our noon, our midnight, our talk, our song;
We thought that love could last forever; we were wrong.

The stars are not wanted now, put out every one,
Pack up the moon and dismantle the sun,
Pour away the ocean and sweep up the woods;
For nothing now can ever come to any good.

From W.H. Auden’s “Funeral Blues”

JEM and Mabel; Christmas 2008 GVM

Max's Wishes

2010-04-15T13:05:00.000-07:00

I, Max, carrying the burden of secret years of life, aware of infirmities heavy on me and realizing the end of my life is near, do hereby bury my Last Will and Testament. My family will not learn of it until after I am gone; remembering me in their loneliness, they will suddenly become aware of this Testament, and I ask them to inscribe it as a memorial to me.

I have nothing in the way of material things to leave; dogs seem wiser than men – we aren’t in the habit of putting great stock in stuff. Dogs don’t waste our days hoarding property (except Teddy Grahams), nor do we ruin our sleep worrying about how to keep the objects we have or how to obtain the objects we have not. The only possession of real value I have to bequeath is my love and faith; these I leave to everyone who came to love me these past five years – to my family, and Mom and Dad, in particular, who will surely mourn me most.

Perhaps it might be vain for me to boast – especially given I am so near death, which returns all beasts and vanities to dust – but, I always had it within me to be an extremely lovable dog.

I do ask my family to always remember me but also not to grieve for me too long. These past five years, I worked to be a comfort to them in times of sorrow as well as a source of added joy in their happiness. It hurts me to think that I should cause them pain, even in death; they need to remember that, owing only to their love and care, I had finally been allowed to live the fullest of lives.

I realize it will not be considered as “fair” my decision to offer only silent goodbyes before I become too much a burden on myself and to those who love me. They need to know it will be my great sorrow to leave them, but will also not be my sorrow to die. I do not fear death as do men; dogs accept death as a part of life, not as something alien and terrible.

What will come after my death, I do not know. I would like to imagine there is truly a paradise where I will always be young; where each hour will be mealtime; where my “Dad” will share long walks along beautiful winding roads, a million fireflies illuminating our way; where I curl up alongside “Mom” on a couch absorbing each other’s warmth, nodding off and dreaming, remembering the best of days on Earth as well as the love of a Family finally realized.

It is my firm belief that peace will be a certainty; peace and long rest will finally come to my weary heart, head and limbs, as well as the promise of an eternal sleep in the earth I loved so well. Perhaps, after all, this is best.

My last request will be to ask Mom and Dad, out of love for me, to adopt another dog; it would be a poor tribute to my memory never to again love another dog. While it might seem I have a jealous spirit, I have always believed most dogs are essentially good. (Clearly, some dogs are better than others – Shelties, in particular.) So, I suggest a Sheltie as my successor. While it is hardly possible she will be as well bred, as distinguished, or as handsome as I was in my youth, I ask Mom and Dad not to “expect the impossible.”

She will do her best, I am sure; her inevitable and manifest deficiencies will only help, by comparison, to keep my memory alive.

To my replacement, I bequeath my collar and leash; while she will never wear them with distinction as did I – all eyes fixed on me in admiration – I wish her all happiness and joy as she comes to live in that wonderful place called, “home.”

One last word of farewell to my family – especially, Mom and Dad: when visiting my grave, while you may justifiably entertain a momentary reflection of regret, I mainly want you to cherish the certain memory of the great happiness you brought to the final five years of my life.

"Here lies one who loved us and whom we loved".

Think or speak those words.

No matter how deep my sleep, I will hear you.

For, not even the finality of death will keep my spirit from wagging a grateful tail and barking with joy for all the angels and neighbors to hear.

Max - April 12, 2010

You were never masters, but friends. I was your friend.
I loved you well, and was loved. Deep love endures
To the end and far past the end. If this is my end,
I am not lonely. I am not afraid. I am still yours.

Robinson Jeffers, 1941

Popcorn Sky

2010-04-02T22:13:00.000-07:00

“How are you doing, Mom?”

Slowly turning her head, she stared vacantly in my direction as though seeing me for the first time; confident in the belief that no son of hers would have ever asked such an inane question, she, nonetheless, offered an extremely sane reply,

“I am going crazy! That’s what I am doing! All I do – ALL day – is lie here staring at this ridiculous ‘popcorn sky!’”

2008

Arriving at the nursing home in the summer of 2008, some were convinced Mom wouldn’t live to celebrate Thanksgiving – let alone Christmas. The statistics were certainly not in her favor; number crunchers in lonely cubicles had coldly calculated a life expectancy of between “six to nine months” for nursing home residents in the final stages of neuromuscular disorders.

By October, hospitalized for the third time in a month, two neurologists spent perhaps fifteen minutes – collectively – making separate evaluations before brashly pronouncing she was in the final stage of her Parkinson’s disease and would not live to see another Spring. (“Sorry, thank you, here’s my bill, goodbye.”)

As if slapped, we had been assured – in unambiguous terms – Mother’s clock was rapidly winding down.

On her discharge back to the nursing home, no time was wasted; Hospice was initiated immediately.

I fast became a living, breathing contradiction: I absolutely wanted Mother’s suffering to come to an end, but would have gladly admitted I didn’t care at all for the prospect of losing her in the bargain. Given time, however, I drank the “kool-aid” becoming convinced that once the chain of events with Hospice was set in motion, Mother would be transported on a conveyor belt toward certain demise.

Our death watch began.

Halloween gave way to November. Days slowly became weeks and, miraculously, Mom seemed to thrive as we eventually managed to celebrate the holiday season that culminated with the arrival of a New Year. Mom was fighting and I allowed myself to hope.

January 2009, however, dealt Mother a severe blow.

A particularly vicious bug made the rounds at the nursing home and didn’t stop at Mother’s door; bedridden for nearly three months, she valiantly fought a respiratory infection that had succeeded in taking the lives of more than a few residents.

By mid-February, a hospice nurse abruptly declared Mother would live no more than two weeks; touting a “95%” accuracy with similar pronouncements in the past, she made a request that all medications be halted and palliative care initiated.

This “nurse” and others had apparently failed to factor Mother’s dogged determination and resolve into their equations.

Thankfully, the grossly inappropriate and premature directives were not carried out by her physician of record; more than a year later, Mother is still very much alive.

But, she is certainly not the same.

Weeks confined to bed recovering from the infection had left her extremely debilitated. Her right foot had become permanently plantar flexed and was beyond the scope of physical therapy. So, in the span of three months, her life was dramatically transformed; no longer able to run the halls of the nursing home trying to find her way “home,” Mother had become effectively bedridden.

October 2009

“I am going crazy! That’s what I am doing! All I do – ALL day – is lie here staring at this ridiculous ‘popcorn sky!’”

Looking up, I immediately understood. Every minute of every wakeful hour of every day confined to that damned bed, Mom had no choice but to stare at the blank canvas of her textured ceiling that had – over a period of several months – become her entire world view. Who wouldn’t go stark raving mad?!

With a wheelchair now her only means of mobility, we took Mother outside later that morning hoping she could enjoy the beautiful fall day. The leaves had reached the peak of color with their resplendent shades of red, orange and yellow; it was the season at its visual best.

With Mom’s frustrating admission still fresh in my mind, it suddenly dawned on me that Nature had provided a possible solution. Gathering up a few handfuls of the brightest, most colorful leaves, I returned to her room. Standing on her bed, I then taped an assortment of the leaves to her barren ceiling, hoping beyond hope the small change would somehow help to break up the monotony of her days.

It worked.

While the change in her affect once she noticed the leaves on the ceiling was not dramatic, at a minimum, she certainly became engaged with “her leaves.” She might speak one moment of the need to “rake the leaves,” then immediately order us to “leave them alone!” She described them in detail to aides, and even counted them for me on occasion.

It amazed and pleased me that a ridiculously simple idea could have affected a difference for Mother as she spent hours alone in silent contemplation of the leaves; most poignant for me, was when she would lie completely still in her bed, smiling and staring endlessly up at her colorful Popcorn Sky.

Emboldened by this minor success in the Fall, December ushered in the anticipation of yet another Christmas season and an even greater transformation of her ceiling for the holidays. A nursing student, Tracy, and I spent a Saturday morning listening to holiday music while hanging a colorful assortment of ornaments throughout Mom’s field of vision; a woolen Santa and Snowman, mittens, snowflakes, and shiny, colorful balls were suspended at various levels about her bed.

It was pure fantasy and she loved it.

April 2010

Winter finally seems to be giving way to a much anticipated Spring.

In the coming days, the snowflakes and snowman will come down from that ceiling to be replaced by suspended mobiles of pictures from her own gardens as well as much loved Sunflowers.

While Mother had to long ago give up working in the gardens that represented her lifelong passion for toiling the good earth, we are determined to force a Spring of our choosing – once again bringing her beloved flowers within arms reach, suspended from the Popcorn Sky.

Postscript: The Girls From Table 5

2010-03-12T19:34:00.001-08:00

The Girls From Table 5

2010-03-04T11:14:00.000-08:00

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

2009-12-01T21:56:00.000-08:00

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

2009-10-29T21:49:00.000-07:00

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

2009-10-15T10:37:00.000-07:00

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

2009-09-10T08:21:00.000-07:00

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

2009-09-02T11:29:00.000-07:00

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

2009-08-26T06:08:00.000-07:00

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

2009-08-18T08:11:00.000-07:00

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

2009-08-14T06:15:00.000-07:00

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

2009-08-10T06:29:00.000-07:00

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

2009-08-06T07:09:00.000-07:00

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

2009-08-01T19:38:00.000-07:00

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

2009-07-28T06:43:00.000-07:00

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

2009-07-16T19:58:00.000-07:00

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

2009-07-10T23:09:00.000-07:00

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

2009-07-10T08:01:00.000-07:00

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"

2009-07-07T08:26:00.000-07:00

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"

2009-07-06T09:57:00.000-07:00

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

2009-07-05T20:12:00.000-07:00

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.

Mom's Favorite Joke

2009-07-04T18:02:00.000-07:00

Mom has never been one to tell a lot of jokes but this is certainly the one exception that, in the end, always leaves her laughing and crying at once; it is all in the telling:

FREDDY, THE BIG-MOUTH FROG

There once was a BIG-MOUTH frog named Freddie who lived not far from here.

One day he decided to leave his pond and see the world.

On his journey he met any number of new and strange looking animals. And every time he came upon a new friend he would excitedly SHOUT with his BIG MOUTH WIDE OPEN using his LOUDEST, CROAKIEST voice:

"HELLO, I'M FREDDY THE BIG-MOUTH FROG! WHAT ARE YOU, AND WHAT DO YOU EAT?"

On his first day he met a four-legged, black and white animal with two horns;on asking his question the animal replied,

"I'm a cow, and I eat grass"

To which Freddy would always reply, "OHHH, IS THAT SO!?"

His adventures took him far and wide; after meeting the likes of mice eating eagles, and honey eating bears -- he eventually came upon a watery swamp.

There he happened on a long, green, slimy creature with huge jaws.

Happy to meet yet another new friend, Freddy BELLOWED:

"HELLO, I'M FREDDY, THE BIG-MOUTH FROG! WHAT ARE YOU, AND WHAT DO YOU EAT?"

At this, the watery beast inched closer, snapped his jaws and replied:

"I'm an Alligator, and I LOVE TO EAT BIG-MOUTH FROGS."

Freddy, the not-so-big mouth frog, gulped and in the tiniest of croaks replied:

“ohhh ... shit.”

Parkinson's Disease

2009-07-03T11:13:00.001-07:00

A picture of Mom about the time she entered college; the trial of Parkinson's Disease had not yet entered her world.

Mother is little more than five feet tall (plus some change) and has been blessed to never experience problems with her weight; it was probably enough to anger a few of her friends.

From what I know of her college days, she possessed a wicked sense of humor and had a tremendous zeal for life. She was in her glory days -- enjoying every moment. Life was very good.

It was after marrying our father as they worked to build a family that health issues emerged; she has almost never been free of these problems since.

Her first major medical concern was precipitated by her small stature combined with the burdens brought on by child bearing; her back ultimately failed, forcing her to undergo numerous agonizing surgical procedures to bring about even a modicum of comfort; in all the years since she has suffered quietly with ongoing back problems.

She was later diagnosed with what was thought to be Tuberculosis. The extent of her disease was so pronounced that her doctors were forced to perform extensive surgery -- certainly by today's standards -- to remove the diseased right lung. It was a monumental trial for her physically.

As if this was not enough, she later suffered a head-on collision at the hands of a drunk driver -- driving on the wrong side of a bridge -- which further compounded her extensive back problems with a neck injury.

In the mid-1990's, she began to demonstrate symptoms of neurological impairment: a shuffling gate, cramped writing, as well as a paucity of arm movement when walking. This led us to suspect the probable onset of Parkinson's Disease. Unfortunately, her doctor's took a few frustrating years to finally reach the same conclusion. Once appropriate therapy was initiated her symptoms improved. It was proving manageable.

The problem with Parkinson's Disease is that it is progressive. Certain dopamine producing brain cells die resulting in less available dopamine necessary for proper body function. As the cells continue to die, you are forced to throw more and more of the "dopamine-like" drug(s) at the problem so as to achieve an adequate result. Unfortunately, just as the dopamine producing cells are fading, the receptors that feed on her medication also begin to diminish in number. It is a losing proposition.

On average, patients with Parkinson's live anywhere from 15 to 25 years; Mom is well into 15 plus years. She is not on the winning side of these averages; Mom's health has declined precipitously in the last year alone.

Nature has a curious way of balancing everything. Mom has been blessed in so many ways throughout her life; it seems the price for all the good may have been at the expense of her health over time. Yet even as she has endured a great many medical issues over the course of her long life, I have honestly never heard her bemoan these problems -- current or past.

I wish I could write that the litany of her medical concerns ends here. In the last two to three years, a form of Dementia has altered her life with a vengeance.

She may not be one to complain, but I, for one, have been left wanting to shout, "Enough."

Max

2009-07-02T11:39:00.001-07:00

I never considered a Sheltie for a pet; we had always had Golden Retrievers, Beagles, German Shepherds, and any number of mutts.

Only once did I amend my own rigid "dog" list after coming to know and love the most fierce, blind Yorkie a person could ever meet.

But a Sheltie? Wasn't on my radar.

Well, my Mother and Stepfather really didn't much care what any of us thought back in the early days of 2005 when they adopted a Sheltie named, Max.

He had a troubled history with owners; Max was fine -- his owners were NOT. At the hands of these people he had apparently suffered from emotional abuse; he had been isolated for long periods of time -- as a result he was not well socialized.

Our parents fell for him at first glance; he apparently cleaned up well.

They took him home for a trial period. I believe the first thing he did on entering the house was "pee" on some furniture. After that, I am told all he did was stare at the front door apparently waiting to "go home." It is sad to think he may have preferred the life he knew with some abusive owners in his past rather than making an effort to bond with people who would give him a very good life.

I met the dog two months into their courtship; by this time Max had made serious inroads adapting to his new life. He had come to believe in and to trust the two of them -- he was, however, not going to tolerate anyone else being added to HIS mix.

When they picked me up at the airport, Mom was seated -- strategically -- in the back seat alone with Max. He was having NONE of this odd looking stranger. I have never endured such an intense silent interrogation; unflinching coal black eyes daring me to make a single move or to utter even a monosyllable.

Most dog people have rarely met a dog they don't like. Well, I had that day -- I honestly wanted no part of him, either.

The picture of the two of them on that couch seems sweet -- if not posed. But is wasn't. This is the position he assumed every time I came anywhere near my Mother. Whenever I dared to move closer, his mouth assumed a menacing snarl.

I had never met a dog like Max. But, I was also equally determined to win him over.

With time his defenses wore thin; he came to gradually accept the strange people called "family" who continued to move into and out of their life -- with no adjustment required of him other than accepting a great deal more attention -- and snacks.

He eventually became more of a people person -- er, dog.

Best is that he became Mother's second shadow; she could go nowhere without him following her every move. And as Mother became increasingly ill, he gladly took on the added role as her "nurse." He had become completely devoted to her.

I remember one night when an agency nurse was not available; another brother and I were in town so we took on the role of caring for Mom overnight while our stepfather attempted to get some much needed rest. I was asleep in the greatroom when I was awakened by the touch of something cold on my face; Max had become concerned for Mom and sought out my help -- he nudged me with his wet, cold nose so as to get me to my feet. Mom had truly needed assistance.

So it is that I came to love Max. He, too, has learned that the boundaries of love are not limited to the three of them -- we all share in a love for him which makes his life even better.

Max and the rest of us have gone through alot together; we are all intent on making Mom's life tolerable as her illness progresses. And now I actually savor every opportunity to look into his warm dark eyes and revel in his happy bucktoothed smile.

Nursing Notes Excerpt

2009-07-01T10:54:00.000-07:00

Wednesday, June 17, 2009 10:00 pm

Dorothy asked me to move her up in the bed because her halo was tilted --
funny :)

Dancing in Wilmette

2009-06-30T08:24:00.000-07:00

This picture never fails to bring a smile to my face and lately brings a few tears to my eyes as well.

I look at this beautiful girl dancing on her grandfather's property in Wilmette, outside of Chicago, and can't believe this was my Mother. I wonder what she must have been thinking, what music -- imagined or otherwise -- moved her to dance, or if the laugh I know was part of this moment in time. The sidewards glance has me wondering if it was directed at her Mother who monitored her every move.

That right leg bothers me.

To look at this little girl, I know she is in complete control of that leg; she jumps with joy and ease. And if one looks carefully, there is the telltale sign of a bruise over her shin earned doing -- God only knows what. Put this beautiful girl in her Sunday best and she proved to be just a little girl at heart.

Mom's right leg has now been rendered moot through disuse as her disease has progressed. After a period of weeks being confined to bed this past winter, her right foot is now permanently flexed; it is immovable.

The indignity is made worse when she expresses an overwhelming desire to walk. One experience of having your Mother look into your eyes, begging for help to free her from confines of a wheelchair, brings on an indescribable heartache.

We recently gave into her plea and, with the assistance of a trusted aide and friend, decided to help her attempt to walk. It was exhilarating, painful to watch, and probably ill-advised; how could we refuse? Tracy assisted Mom to her feet, and, with all the will she could summon, Mom took three tentative steps. The right foot refused to cooperate yet she persevered. She then uttered words that broke my heart, "I just can't do it."

I no longer have many problems dealing with the physical assaults on her body but I struggle when she becomes defeated; Mom didn't have to say anything for me to understand the expression on her face. Defeat is not a word in Mother's vocabulary; it is not part of her nature.

Her leg is still covered with bruises, but they were not earned at childhood play; instead, they are a result of some of her medication as well as the fact that she now doesn't move without the assistance of an aide or family member.

I never had the opportunity to meet the girl in this picture. If only I had the ability to transport myself to her grandfather's home in Wilmette on this sunny day so long ago. I would give most anything to see this beautiful girl -- dancing without a care in the world.

A rose by any other name ....

2009-06-30T04:58:00.000-07:00

Mom's Favorite Flower - Queen Anne's Lace

A Lowly Weed

(photo: Derrick Bennitz)

January 2003

2009-06-29T20:18:00.000-07:00

Reality hit home with my family in January 2003 with the sudden death of our father; he blessedly went to sleep one night never to awaken. I believe this represents the single most transformational experience in my life to date. Until that time I had personally lived with a veiled delusion that death would never cross our threshold. Despite a medical school education and considerable experience with death and dying, I had somehow managed to "semi-convince" myself that we might actually be spared the final act -- the simple, painful, and odd truth that we all -- each of us -- "owes" a death.

My patients who have died, either traumatically or at the end of a protracted illness, were clearly abstractions, while the sundry elderly relatives I have lost over the years had surely been preordained for that fate. But, MY OWN circle of family members were surely never meant to age or to suffer from disease, thus avoiding being touched by the cruel hand.

Clearly, my delusions collapsed that winter morning forcing me to begin accepting the fact that death surely is going to audaciously exact its toll on MY ENTIRE FAMILY given time -- the stats don't lie -- a debt will be paid. Sure as anything, no one ever asked if I like it.

One very well-intended, nice, elderly church lady (hat and all) felt compelled to impart some wisdom to me following Dad's funeral -- words that have never escaped my conscious thought,

"If you think losing your Father has been hard, just wait ......... losing your Mother will be 100 times more difficult!"