Caregivers and Other Heroes

I saw her first in silhouette, the bright sun from the third-floor western window etched a crisp black image of a faceless woman on my retina.

She leaned forward stiffly, bending to the oversized recliner in the corner of the dim room. The chair’s resident was lost to the shadows. She turned to look into the hallway, just as I looked through the open door. A tiny flash of recognition and a flush of emotions shot up my spine.

Hope“I have seen this before,” I thought.

I looked away quickly, waved cheerily to another resident and moved on up the corridor. I had a “planned” conversation at the end of the hall, I would go there first. That is what we do isn’t it? Put the recognized task firmly in our path, effectively blocking from view any unexpected possibilities that might crop up. A “plea” could be followed by “needs,” bringing forth evocative emotions; always better to stay “on the path” for efficiency’s sake.

“I will stop on the way back, a little later.”

But “later” wouldn’t do. Time is mutable in the cosmos of the fragile, frail and elderly. Appointments are secondary to bodily functions and short term memory. The only real time to manifest anything is “right now.” I barely felt it; just a small shutter. Then as awkwardly as a stiff brake applied to rusty track, I eased to a stop. Rich images of my own experience oozed from of the cracks in my demeanor. Something about the figure moving against the bright light had elicited a memory.

It was a summer evening, a cabin in the Adirondacks, multiple generations were gathering on couch and floor to watch “family movies.” There it was! My elders illuminated in silhouette, crossing the projector beam, crisp black images against the brilliant white screen. They were unmistakable in form and movement, reaching out for the arm of a chair in the inky blackness. I was a child then, as was the technology of watching the past. These were short, silent wonders of physical film. The movie camera my Mother piloted had a sound; a mechanical “whir” that elicited good behavior and hastily assembled, always smiling family cliques. Film feels different from our avalanche of IPhone personal documentaries and excessive disc space. On film, time is short, images are precious, life is a temporary condition.

I heard the brittle film creaking dryly around the gears and sprockets of our 1960’s movie projector. We watched long departed family in mid-century vignettes, wrapped in golden patina, roll by on 35 mm. celluloid.  There I am at three. There is my great grandmother, and my parents looking happy and fresh. But 50-year-old film is tenuous, as people are impermanent. Unexpectedly, the precious film would rip, sending the take-up reel flapping as a single frozen image melted before our eyes. In the space of a breath, our elder’s elders were gone.

Endymion

Endymion George Frederick Watts http://www.georgefredericwatts.org

Back in this continuum, I had stopped dead in my tracks in the busy hallway.  A strong scent of desperation reached out to me, I stood there blocking the path. Something tense and taut in the faceless woman’s posture had caught me deeply in my solar plexus. In my belly, there was an echo of the anger, fear, and impossible deep sadness of ambiguous loss.  I heard her then,

“My husband is right here in front of me, and yet my Husband is gone.”

This was a cocktail of grief almost too strong to be understood by anyone not of this tribe. I had intended to pass the unfamiliar room. I could return later, maybe. Something in the scene sought more than a bookmark and a cursory promise. Some ethereal wisp of this woman met me face to face in the hallway. She spoke to my soul again.

“I am here,” she said, “I am still here.”

Such is the destiny of Caregivers.  They give all they have; pouring heart and soul, optimistic intention, and endless time into their fragile loved ones. And for most, the end of this Hero’s Journey finds their own hands empty. I hope their hearts are as full as those who have passed gently into the next world under their care and comfort.

  “Long Term Care or Health Care Center are the current alias for “Nursing Home”.  I think the newer terminology is an accurate assessment.  Extreme medical interventions at the end of life, create “Terms” of residency that are so much “Longer,” than ever before.  Death can be elusive for those who haven’t made their “end of life” choices prior to an emergency. For the people who live and work here, “Nursing Home” hails from another era. The “real nurses,” those who chose this profession to care for the sick, lament the lack the time for giving “real nursing care” to their residents. And for anyone who lives here: make no mistake! Long term care surely isn’t “Home.”

Professional caregivers are saddled with mountains of paperwork, onerous regulation, and workplaces that are perennially short- staffed. Not surprising that caregiving positions go unfilled. In this locale, a CNA, the backbone of “hands on care,” might start at $11.00.

She, (they are predominantly women), will care for as many people as necessary. There is no “I will pick this up tomorrow,” in this field. These hardworking caregivers cannot drop a confused resident in the drawer for another day. Every need must be filled- Now. Short staffed might mean 15 people to toilet, feed, put to bed, medicate in an 8-hour shift. This is Long Term Care, (LTC) such as it is in 2017.

I have a love-hate relationship with these facilities.  I love the people; I hate the concept of sick elderly as commodities. I hate the low pay for the people doing heartbreaking, back-bending work of caring for our family members. How can it be that so little financial resource is engaged in the actual “hands on” care of our precious elders? These choices were made for them by illness or circumstance. Many residents have complicated medical needs beyond the scope of home care.  Many are just too frail for the outside world. They cannot go home. These are folks of “the corridors.” They are all here: the optimistic, the compliant, the fighters and those that have gone on to different realms while leaving their bodies here.

Finding myself blocking this particular corridor, I stepped aside. The aid passed by with the complicated apparatus of physical impairment and a weak smile. I was not “unwelcome” here, but I was sometimes an impediment to efficiency. Stepping up to the room, I saw the resident of this long-term care, “half room.” This room held two residents, thoughtfully separated by a wall that extended halfway to the door.  You may hear your neighbor, and all that he experiences, but seeing them is avoided, unless coming or going to the shared bathroom.

Love-and-Death-2

The silhouetted woman looked up as I knocked on the open door. No longer looking like a Facebook profile with no photo, she had a face when I entered the room; a worried, fragile, thoughtful face.  This side of 70, trim and neat, she wore a plaid blouse tucked into pressed jeans, and carefully combed hair. She welcomed me,

“Come in. Please come in. Thank you for stopping.”

I made a mental note: Always Stop. Sometimes the real beauty is in the basics.

I introduced myself as volunteer, interested, and willing to listen. She waved her hand toward the low bed with the blue blanket and I sat next to her, opposite a tall man with gentle grey eyes.  It was her husband in the recliner. He was looking comfortable and well-tended, but lacking the measure of ease that can be a byproduct of some kinds of confusion.

“He is doing what he has to do,” I thought.

He seemed acutely aware of her circumstances; frustration, overwhelm and sadness. Forty years of communication doesn’t fade quickly. I wonder if he knows already how it will end, and that there is nothing he can do to change this scenario. He smiles, at her, at me, at everyone who enters the room. She introduced me and I shook his hand. Realizing no sound made it through the space between us, I showed him my tag and he read my name.  He seemed to find pleasure in using the words.

“When they know he can’t hear, people don’t bother to talk to him,” she said. “He has almost no hearing and his hearing aids are missing again, for the third time!”

She described multiple visits to area hearing experts, trials of expensive equipment and his final acceptance of his deafness. Acceptance, like beauty, is in the eye of the beholder. The frustration in her voice made the words tremble, but his gaze never changed. I realized then; direct communication with this gentleman, has been rerouted through his wife. She had fought the battles.  She had intervened.  She was here day after day, interpreting the world for him.  I wondered where “she the person, the professional,” was in this plan?  Where had she gone, and could she ever come back?

“I am a nurse, I took care of him at home for 8 years, until I couldn’t physically do it anymore.”

I tried to imagine this small woman negotiating even the most standard activities of daily living with this man at twice her weight, head and shoulders above her in height. There had been multiple medical issues, across 15 years, it had been a slow decline.  She had lost family members and close friends, most recently a sibling. She recounted the death of a parent during childhood and I suggested that this was a great deal of grieving to be carrying.

“What I grieve the most is our conversations.  I miss eating breakfast with him and talking. I come here every day for his lunchtime so we can share a meal together.” Describing her trip in from their rural home an hour away had been treacherous a few times this winter, “I waited too long to go and got caught in it!” she said. 

Proudly, I thought. She had conquered her fear of driving alone to their rural home in the dead of winter.

TimeI wondered if the taut tension in her slight body was the result of a few too many white knuckled trips home. She smiled with a nervous laugh, and I saw just a piece of “her” wink back at me.

I wondered what she would be like without three layers of worry and the awareness that she was saying goodbye to her life’s partner in grueling slow motion. She talked about their close two-person family, and her immersion in a productive career; creating current nursing guidelines for facilities such as this one.

After years of struggling at home alone with his physical care, she is here.  She moves daily between “home” and “Health Care Center.” It appears that she is soaking up the last sweetness of her lifetime relationship, while she can. She is a maelstrom of emotions, and yet there is no other place she would rather be than here; at his side. Such is the way of Grace. The best caregivers understand how tenuous and temporary is their precious and nearly impossible to bear burden.

And this is only one bed, in one room, in one facility in a small corner of New York.

 

The-Dweller-WithinIn 2014 there were 1.7 million beds in Long Term Care facilities in the US.  Projection for 2050?

25 million.

Who will be there to care for these people?https://www.cdc.gov/nchs/data/series/sr_03/sr03_038.pdf

I like to imagine that those who have gone before, use our experiences in the” here and now,” to encourage, teach, and even give the occasional “heads up” about what lies ahead on tour life path.  They encourage us to be thoughtful and care deeply for the people around us. We will be “that” soon enough. This experience raises questions for me, and indeed all of us! If I’m a bit “off,” and you have been asked to make decisions for me; this is your reference material.

BWOwl“Our bodies were not designed to go on forever. If I am badly broken, don’t fix me.  I have already had an extraordinary life! Save the bionic parts and the fancy interventions for the children. From the beginning of time people got old and died, usually at home. I imagine a gentle process where my world gets smaller, and I get slower until I wind down like a clock and just stop. I can imagine it might look messy and sad from the outside, but don’t be concerned. The Fall doesn’t look like the Spring or the Summer, it is a wonderful season in its own right. No worries, it will all come out just fine.”

On this day, I took the elevator at the end of the corridor.

I returned to my car in bright sunshine. I was left to wonder at that brand of courage, love, tenacity maybe all three that I witnessed in this couple. I backed my car out of the space, took a long last look at the building, and experienced a rush of gratitude and appreciation for the relationships, the good health and the ease in my life.

“I can go home.”

Thank you for the experience, I am grateful.  I wish gentle passings for us all.

All paintings by:

George Frederic Watts (23 February 1817 – 1 July 1904; sometimes spelled “George Frederick Watts”) was a popular English Victorian painter and sculptor associated with the Symbolist movement. Watts became famous in his lifetime for his allegorical works, such as Hope and Love and Life. These paintings were intended to form part of an epic symbolic cycle called the “House of Life”, in which the emotions and aspirations of life would all be represented in a universal symbolic language (From Wikipedia).

http://www.georgefredericwatts.org

 

 

 

 

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