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.

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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!”

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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.

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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.

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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.

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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.”

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“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.

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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.

Awakenings

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

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

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

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

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

They were considered the “living dead.”

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

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

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

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

Mother.

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

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

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

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

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

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

“Hi, Bobby! How are you, sweetie?”

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

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

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

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

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

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

“What in the hell has happened?!!”

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

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

To me, his story is simply profound.

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

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

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

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

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

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

She Sleeps

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Whether she actually slept that night we will never know.

Rest assured, she was there when we awoke.

Schweigen

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

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

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

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

Astutely realizing he needed my attention, I asked,

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

He responded by mumbling good naturedly,

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

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

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

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

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

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

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

"Sprecifien ist silbern, Schweigen ist golden."

"Speech is silver, Silence is golden."

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

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

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

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

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

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

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

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

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

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

"You need to shave."

Her speech IS golden.

Comfort

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

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

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

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

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

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

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

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

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

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

Hospice.

I was not prepared for this.

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

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

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

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

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

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

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

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

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

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

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

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

Four O'Clock

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

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

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

At least, for a while.

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

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

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

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

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

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

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

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

And then there were the bad days.

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

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

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

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

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

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

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

Dementia

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

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

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

I could not have been more wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I miss the Mother I knew and love.

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

Parkinson's Disease

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."