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.