Category: Hospice

Farewell, Uncle Bobby

saint sebs

 

 

And they came, a surprising number of them, to say goodbye to a wonderful man. They came to a beautiful stone church nestled in a quiet neighborhood on the East Side of Providence.  A neighborhood whhere the young Robert Barry slid down snow-covered hills and skated on pristine frozen ponds.  Where he passed a long armed wicker basket among the communicants each Sunday morning at 9 am for forty years.  Where he lived the life of a gentleman for 86 of his 90 years.

And we said goodbye with laughter and tears, and finally, with a full military salute as a young officer handed me a perfectly folded American Flag and with extraordinary grace informed me, “On behalf of the President of The United States, we thank Robert L. Barry for service to his country in the Second World War.”

It was a marvelous day.  And here is what I had to say about my dear Uncle Bobby:

“It is good to be home here in a church which meant so very much to the Barry Family.  Built in 1916, Our Grandfather Louis Barry was one of the builders of Saint Sebastian’s.  Robert Barry served as an Usher here for 40 years.

He was, for most of my life, my elusive bachelor uncle. My earliest memories are of a Volkswagen beetle and my wonder that a man so tall could fit in a car so small.  He was a teacher and a veteran and a constant guest at my mother’s dining room table, not a holiday missed. He loved the great writers, and Herman Melville was his favorite.  He was like Ishmael: a man of the Sea.

It was not until the final years of his life, that I came to know the core of him.

Uncle Bobby was, in no particular order, Charming, stubborn, private, witty, sensitive, resolute, exasperating, and sentimental.  He was, above all things, a gentleman and a gentle soul.

His Accountant, Attorney, Financial Advisor and notably, his cousin John Murphy were intimately aware of how very exasperating Uncle Bobby could be.  No decision came quickly, no action moved upon swiftly.  He was careful and cautious.  All things on Uncle Bobby’s time. When he came to Connecticut to live his final year I came to understand this.  Asking Bobby to move in a concrete direction was much like trying to drag an anvil through the sand with a piece of taffy.  Make no mistake, he was captain of his ship til his final breath.

His charm was disarming.  That was his secret sauce and he spread it around liberally. In the great battle he fought with his body this past year, he always had a reserve of charm.  When he passed away, I received notes and calls from the care workers, mostly young women, mostly Hispanic. They spoke not of his death, but of the songs he might sing to distract from the intimacy of his care, the anecdotes he would share while they went about their noble work, or the questions he would ask them about their own lives.  He had the charm of a true gentleman

As for me, this journey with Uncle Bobby was a great gift.  In his suffering, I learned perspective.  In his mounting challenges,  I learned that patience and trust in the God are essential to finding peace.

He wrote in my elementary school autograph book, which I still have, “To Ellen, Miss America, and my very best girlfriend.”  He remains one of the most memorable men I have ever known.”

 

 

Small Victories…

Small Victories…

Ah, Savannah! Cobblestone streets which lead to an endless river walk, the hint of hauntings and pirates and…. humidity. My God, the Humidity! 48 hours spent in 95% humidity and thermometers which race to 98 by 10 am. I learned a new term in Savannah: swamp pants. No need for detailed description.

Amidst a swarm of tourists there are caramel coated Southern men who tip their caps and, with honey-dipped accent, say “good evening ladies, y’all lookin’ beautiful tonight.”    It is not lost on me that were the same type of man to approach me on a sidewalk in Danbury, CT, that flirt might feel intrusive or vaguely threatening. On the streets of Savannah, it makes me feel…..well, lovely!

The breadth of architecture in the city almost makes you forget the heat. How many different styles can create neighborhood squares? Georgian, Federal, Gothic, Greek, and Italianate merging together, flanked by majestic oaks draped in Spanish moss and grand magnolias just past their bloom. Rather than distract, the lack of uniform architecture intrigues; each neighborhood like a different movie set. Savannah, you are stunning! I only wish I had more than 48 hours to give you.

But 48 it is, and once my daughter is settled in for a week at Savannah College of Art and Design with the hope of finding her heart’s desire, my mind and body returns to the business of Uncle Bobby. Last week he moved from home hospice to inpatient hospice care at a newly opened local facility. Regional Hospice is stunning in its own way, understated elegance diverts attention from the very real business of the journey to what we hope is peaceful death.

To gain a bed in this elegant, twelve patient model of dignified care, the end must be foreseeable. Uncle Bobby has been dwindling for many months, but the final leg seems a bit like pulling an anvil through the sand with a rope of taffy. His body has mostly shut down, but his mind is where the fight lives. He has a beautiful, nimble, oft surprising mind which scoffs at the destruction of the rest of him.

The hospice Chaplain said this to me recently,

“I have seen denial of the inevitable to nearly the last breath, but I sense something else with Robert. It is as if he has he’s fought so hard in his life that he is conditioned to fight on. It’s remarkable, really.”

I was nervous to be away from him during the Savannah 48 and return to discover that perhaps my concern was justified.

As I head toward his room on Tuesday morning, I am intercepted by his on-duty nurse.

“Well, he hasn’t eaten or taken liquids since you left.”

Confirmation for me that my choice to skip the vacation end of my trip was prescient.

Any swagger gained in Savannah let’s go like helium from a fourth of July balloon. I enter his room with trepidation and immediately spy the nearly empty catheter bag. Uncle Bobby is speaking in low murmur to the local Catholic Deacon who interjects solemn nods with practiced empathy.

“It’s brutal here.”, Uncle Bobby offers weakly to Deacon Peter.

“The nights are the worst. No one pays attention to me.”

That would be the dehydration speaking. Of this I am sure, attention and care at Hospice exceeds reasonable expectation.

His mouth is dry, his eyes sunken and cheekbones more pronounced that just three days before. Gaunt would be the adjective of the day.

It strikes me, as Uncle Bobby drones on, that Deacon Peter is a bit above his pay grade in this moment.

“Robert, is than anything I can offer you in spiritual support?”

I know, of course, that Uncle Bobby’s spiritual underpinnings are well in place. There is an agenda here that no amount of scripture or communal prayer will address. Uncle Bobby knows his agenda, he just needs an interpreter.

There is no warm welcome home when he realizes I am there. He nods to Deacon Peter,

“Oh, here’s my niece, she’s just arrived via airplane.”

He laughs a little to assure everyone he can still tease with effect.

I stand over him,

“Well, hello. I hear you’re doing quite the imitation of Ghandi.”

At this Uncle Bobby realizes that the jig is up, and stares straight ahead, tightening his slack jaw to firmly pronounce,

“Maybe.”

His eyes briefly turn to me to gauge response, only to return to a straight ahead glare which indicates that negotiations are about to begin.

“So, to choose not to eat or drink tells me you’re not hungry or thirsty?”

“No, I’m hungry.”, he replies.

“ Okay then..”, and I shift with the practiced competence of anyone who has raised children.

“What can I do to convince you to drink something?”

With that, Uncle Bobby lifts his feeble arm, straightens his index finger and points to his left.

“I WANT to sit in THAT chair!”.

Clarity! Clarity I can deal with.

He is tired of the bed. The bed he refused to get out of for the past month now frustrates him.

“Let me see what I can do.”, I tell him and take a short leave.

A chat with the head nurse and doctor and some fine negotiation surrounding their concerns for his frailty and suddenly a move to a reclining chair is in the works.

In answer to their concern about his frailty I say this,

“Well, he is dying, and mostly miserable, so I think a request not to languish in a hospital bed is reasonable. If the chair is where he dies, well at least he gets control over something. Right?”

That resonates and the promise is made. Ghandi can nourish himself and the strike can end peacefully.

Uncle Bobby seems unimpressed by my problem-solving success. I return to him with the news and insist the reward for my cleverness be his agreement to take a sip of juice.

He relents

As I lift the lidded plastic cup to his lips, he waves it away momentarily, looks me right in the eyes and says,

“Just because I’m drinking doesn’t mean they can expect me to be some easy boy now.”

I roll my eyes as I watch him take in the liquid,

“Not to worry, Uncle Bobby. there’s not a prayer anyone here will ever confuse you with some easy boy.”

The following morning, I return and Bobby gets moved to the chair, which has wheels. For nearly two hours he sits up and takes in the lay of the land of his new home. He even goes outside for a bit, lifting his face to the sun with closed eyes.

From the garden, we go back inside and sit for a bit in the elegant library where he quizzes my brother, just up from Virginia for a short visit. Then we shift venues to the family room, where a darling elderly lady, propped up my pillows in her wheelchair listens intently to her extended, very animated visitors. They are loud and funny and remembering their childhood in her home. There are references to Mario Lanza and Edie Gorme, and bread from a bakery in the Bronx.

We can barely speak to each other over their din, but it doesn’t matter. Uncle Bobby is smiling and fascinated. He pokes my forearm and whispers, “Italians! I feel like I’m back in Providence!”

Sure, Italians and Irish, constant cousins in Rhode Island and it feels a bit like home in hospice this day.

Uncle Bobby loves this. It is life and living and it takes him away from the smallness of a lonely room and too familiar hospital bed.

It was a wonderful day. He has had too few of them since spring.

He eventually gives in to weariness and we return him to his room. The nurses lift him back in his bed with smiles. They know how important this adventure has been and Uncle Bobby’s contentment lifts them.

As I move to leave I tell uncle Bobby that I’m proud of him. He likes that and it prompts him to finally ask,

“How was Savannah?”

“Just great, Uncle Bobby. I’ll tell you more tomorrow.”

It moves me that this day has taken him away from his perseverations.

While I needed an airplane and the charms of the South to rejuvenate, Uncle Bobby needed but a chair with wheels.

I will tell him that Savannah was, like hospice is today, full of life and living.

Journeys

 

stewart

It is precipitous, this fall to mortality to which I have a front row seat.  Seems like yesterday Uncle Bobby was waxing on about old girlfriends and pontificating about the perilous future of our country.  In a matter of weeks, we are navigating new terrain.  It’s unsettling, this new place, and it calls forth an oddly tireless exhaustion, driven by the grief that is moving into my soul.  A grief in limbo. A larger grief is yet to come, but it has begun its insidious arrival.

Uncle Bobby is still here, but not in the same way.

I already miss the recliner chair that he spent too much time in this long winter. It’s emptiness nicks at me each time I walk into his apartment.   I don’t like the hospital bed in his room.  I wait impatiently for him to give me some indication that he is coming to peace.  Instead, he seems defeated, agitated, and so very tired.  His voice has lost its deep timbre, and today, as he tried to articulate I saw only exasperation in his attempt to moisten his own lips.

“I’m sorry for this baby talk.  It’s all I have.”

No need for apologies, unless they are from the Good Lord to whom Uncle Bobby gives a nod every day.  I want an apology from the Good Lord for stealing this more than good man’s dignity.  I confess that I don’t understand this painful part of taking one’s leave. I want the Good Lord to cease the lessons of suffering and get on with the redemption already.  Uncle Bobby deserves no less.

There is a philosophical query many of us casually engage in​ while we still have our physical and mental health: Would you rather lose your mind or body first?

I am now very sure of the answer.  Take my mind, Good Lord, I could not bear to watch the decay of my body with full faculty.

There is nothing of Uncle Bobby’s body that hasn’t been assaulted.  It is bruised from head to toe, just from shifting in his bed or the caring manipulations of nurses while they bath and change him.  His eyes need warm compresses to alleviate a building film, and reading even the menu of food that he will ultimately just push around his plate with his fingers is futile.  The fingers and the food?   His flattened hands have lost all fine motor skills. He can no longer draw  a plastic cup to his lips to drink with  regular success.  He tries and tries, and spills and spills.  His legs have not borne his weight in three months, his toes are riddled with open cuts threatening infection.  Bed sores spread on his back and bottom as he perseverates about a relentless itch that is a symptom of the overall breakdown of his skin.

He does have his hearing, though.  He can hear loud and clear.  His hearing is so acute that he can hear every creak in the building.  His hearing often interrupts his sleep.

In a rare late-night visit this week to meet a new overnight caregiver,  I was audience to the “sun downing” people  make reference to in the elderly.  As I spoke to Yolanda, his 11-7 guardian, I heard Uncle Bobby’s voice, not calling to anyone, but speaking in sure sentences.  I quietly entered his room to see his right hand gesticulating in the air while he gave what appeared to be a speech.  His voice was sure and strong, his eyes open, but not awake.

“The Congress needs to meet with the Veterans of Foreign Wars. Not just the heroes, but those who suffered as well.  Our country must hear from all good men who served……”

Suddenly, Uncle Bobby is Jimmy Stewart and I am observing a “Mr. Smith Goes to Washington” moment, and it is entrancing.  Uncle Bobby’s mind is busy, racing in the night.  He has things to say, opinions to voice.  He is a patriot, a World War II Veteran of the South Pacific who suffered in ways we will never know, and at night when his world is quieter he says what he has wanted to say for a lifetime.  He is too much of a gentleman to foist his humble opinion on others in the light of day.  A gentleman who is not yet ready to let go.

Sometime this winter I thought June it would a good time to grab a getaway on the coat tails of my daughter’s summer college experience.  While she studies in Savannah, I’ll steal away to Charleston and try it on for future fit.   What’s a week when I haven’t been away for more than 48 hours at a clip in nearly two years?  Historic Southern charm seemed like a great idea to get the reboot I need. I root for the ocean, Spanish Moss and the sweet smell of magnolia to ease my concern that maybe this liberal Northeasterner might be “too much” for the gentile South.  It’s my year of my reinvention, right?

Let’s put a pause on that, shall we?

Tonight I decided to abbreviate that trip.  72 hours is all I suspect I can stand to be away from Uncle Bobby’s journey.  Even that will be a challenge. I will settle my daughter in and get back to the business of Bobby.  It is the only thing that makes sense to me on this night of a nearly full moon.

They’ll be time for re-imagination galore at the end of his journey.  I’m on his time for the time being.  He is frightened and I am his constant.  I can try on Charleston any ol’ time.

The journey?  Well, the sands have picked up pace in the hourglass.

As for the Good Lord, I confess that despite my religious pause, I can’t quite seem to shake the old Catholic out of my soul. The Good Lord might want to take a listen right now.

“I need you to get busy with the business of Bobby, help him find peace and quiet his extraordinary mind.  It’s time for an assist, Good Lord.”

The assist is well earned.