Eighteen Hours

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.”

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.

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.

Popcorn Sky

“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.

Comfort

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

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

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

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

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

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

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

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

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

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

Hospice.

I was not prepared for this.

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

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

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

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

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

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

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

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

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

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

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

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