Captured Life

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

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

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

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

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

“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

"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.”