Hospice: One Death

One Death
I think… we are not losing individuals; we are all moving towards one death. ...
0 Comments / 3 Shares

I am standing in the hallway listening to Marie talk about her 80-year old mother who is in the room next door battling colon cancer. Glenda and her mother Barb also stand with us, and over their shoulders, I see the gaping mouth of a man who is breathing hard, chin raised to an unknown lofty view. This man, their father and husband, fights on a silent battle ground of advanced colon cancer. He is sedated beyond reach, a necessity to numb the chronic pain.  Mother and daughter have mixed feelings about all the medicines, mostly because they took him away to an early deep sleep. It is just one of many choices facing us caretakers:  More medicine or possibly more pain? A feeding tube or just water?

Behind me, in the room across the hall, is my own grandmother. Ninety-seven and lying in the same state, she arrived after the others, the latecomer to the oddest of gatherings called hospice. 
 
My grandmother’s door stands open and I turn to see her sunken lips rimming her gaping mouth, her whole frame led by her chin that is also pointed skyward. Unlike yesterday when I arrived to discover my stroke-ridden grandma still responding to some of her environment, today she barely mumbles, choosing instead to expend energy on each heavy breath in and out of her rail-thin body. 

Until a week ago, her body remained faithfully strong and we heard her laugh over the phone lines stretched from the grayness of Ohio to the verdant South where I live.
But then the betrayals began. One morning, she awoke to announce she had “lost her arm”. When my aunt inquired further, it seemed a stroke had silently come and gone in the night. The next morning, Grandma expressed relief that all the party-goers had gone and what were they to do with all of the food? My aunt didn’t question her skewed reality. The final morning at home, my Aunt Mary discovered a silent intruder had left Grandma lurched over in her bed.

As I stand in the hallway of this hospice, where soft music, tapestry chairs and wood floors make a respectable attempt to create a feeling of homelike warmth, I find myself among these strangers in a place where death is our only common denominator.

The walls and halls tell past stories through neat gold signs. “In Memory of Josephine,” or “For Margaret, beloved wife.” A donation of a water cooler, a bench or a painting. 
As I pass rooms, scraps of words or the sound of a TV or a nurse talking loudly float through the doors, each one standing open. I feel as if I am strolling through a college dormitory where bodies mix and mingle, crossing between rooms to share a story or just hang out. 

At the start, I craved privacy with my grandmother and kept our door closed. Sleeping next to her bed or observing her, I struggled to separate the scientific from the mystical.  She mumbled a strange soft incantation through her parched mouth and peeling lips, constantly moving her right arm. The doctors said she couldn’t swallow, couldn’t comprehend.  She had not taken food or water in three days and my new task involved simply wetting the inside of her mouth and lips with a blue sponge on a stick that resembled a lollipop. They said she could still hear and that hearing is the last sense to leave a body. Over the next days, I would find that to be true. Grandma stayed near enough and I believe she felt my presence as something, if nothing more than simply familiar.

I think at one point I hear my name through the jumbled jargon. I think she has said I’m hungry. She stares at me…or through me…or possibly thinks I’m someone else. She whispers to the ceiling, opening one eye, then closing it.  She moves her mouth in silence at times. A nurse tells me that they call these “window” times, when a patient may return momentarily before slipping away to another world. Always, her right arm moves as if searching.  She conducts an orchestra or touches her chin, pulls at her sheet as if she can’t get comfortable.

Often, I like the silence. I talk to Grandma.

“Everyone sends their love. You’re in the hospital.”  I lie. It seems irrelevant to inform her that really she’s in a group home of death, a sorority house for the sick.

I find I need the door open more and I venture out and begin talking with other women like Barb and Glenda with whom I now stand.

We ask each other all the same questions with a familiarity that seems more befitting a barstool than a hospice hallway.

“Who are you with?” Barb asks me.

“My grandma. She’s 97.” 

I walk the hallways, passing other family members who walk with the same weariness, the same dark circles under their eyes, the same compassionate look passing between us.  I can’t help but notice that the cancer patients have faces that glow like jaundiced leather.  I have become a voyeur, glancing in other doors at the gaping mouths and families seated on the floors, window sills or leaning against a doorframe, quietly talking or listening to the January football games. 
 

Someone says that trying to predict death, even an imminent death, will make you crazy.  I wonder if that’s what my friend Mark meant when he signed his email note to me the other day.  “Keep your sanity,” he said. I smiled at his lighthearted compassion when I read it. Now, I begin to understand better. The mind plays tricks, justifies, hopes, cries, denies, accepts, denies again, and rationalizes anything to make sense of a slow separation. I know only one thing:  I can’t conceive of her slipping away alone.

I spend more time walking the hallway, and one afternoon, meet Marie at the puzzle table.  She talks of her mother and doesn’t quite believe the doctors are right when they tell her that her mother will only live another few days.

“She doesn’t seem like someone who is ready to go.”

I have no answer for her. We work the puzzle and our words take shelter in other polite topics like work and family.

Time inches, and by day three, I struggle to remember the day of the week. With deadlines looming, I try to work, organize my notes, schedule interviews---stay busy.  I hijack a lamp from the family lounge and position it in our room, shutting off the glaring overhead lights. As I walk the halls, I notice many places for “the family”. The family restrooms. The family dining room. The family lounge. The family linen closet. The family refrigerator. It is as if a polite compassion streams through every corner of the facility where the staff hovers at elbow’s length, ever careful to support yet not intrude.


Meanwhile, we family talk more and more like staff, conversing about failing kidneys, morphine, the color of someone’s skin, the boniness of an arm, urine output, pain, and fear. Conversations remain basic. “Have you eaten today? I have an extra sandwich.”

Late one morning, I gather my laptop and head for a wireless connection in the family cafeteria. I work quietly, draining the free-family vending machine of hot cocoa, coffee or tea. As I work, I feel the presence of someone behind me. It’s Glenda, heating up water in the microwave and sobbing.

I get up and call her name.

Her tears fall and we hug like old college friends, not like two women who just met barely forty-eight hours ago.

“What is it?”

“His kidneys have shut down, so it’s not long now,” she says.

As we talk, she confesses it’s not the piece of news that upset her most.
 

“I wanted to feel his abdomen where the hard mass of cancer had been for months. When I turned back the sheet, his stomach was completely flat and he had become so thin his backbone touched his stomach practically.”

I had begun to notice that cancer patients on the hallway died a similar death. Faces appeared gaunt, almost bereft of any thickness. Skin appeared leathery. But when I looked at Grandma, I could still see my grandma, with the puffy cheeks, rounded nose and strangely pinkish cheeks. 

At night, with the lights out, I listen closely to Grandma. I find myself wondering about a new sound. Is she in pain? Her breathing fluctuates and pauses. I hold my breath.  Will I know when she dies? 

I walk the halls more, believing that maybe Grandma needs solitude to make her final exit. I am the scent of a thousand magnolias. The words creep across a pastel water color hanging in the family dining room. I think… we are not losing individuals; we are all moving towards one death.

Early one evening, I wander into the family lounge and find Marie and Glenda working the puzzle. I take Glenda’s seat when she leaves. Soon, Marie and I are deep in conversation about our lives. She speaks distantly, almost wistfully, about her own desire to find a creative outlet or work. She likes her job, most of the time. She talks about her daughter and grandson who are en route from California and, the tone of her voice lightens.

The next day, I see Marie, nearly glowing as I pass her mother’s room and I stop in a moment.

“This is my daughter and grandson,” she motions.  I shake the young girl’s hand and smile at the dark headed boy who had climbed into one of the chairs and had fallen fast asleep. As I leave, I think their arrival had at least evened the playing field for Marie, bringing as much life as death into that small room.

On my fourth day, I awake late around 8:30 am. A nurse arrives and checks Grandma.  After she leaves, I climb out of bed and open the hallway door. Immediately, a neatly-made bed fills my view. No Glenda, no Barb and no Ray lying on his back with his chin pointed skyward. Someone has opened the blinds and the room is startling light and quiet.  I cry. They are gone.
 

I feel unprepared for the vastness of the unknown. I feel myself in that moment like a transient. But more than anything, I feel scared because Grandma and I can’t turn back, and soon, her room will hold only an empty bed.

Near the end of the week, my end of the hallway is void of people and quiet.  \No more large gatherings across the hall or the sound of a T.V.   \A family wanders by my door, a mother and father with three toddlers in tow.  The toddlers make me smile.

In the afternoons, I sit with Grandma who breathes with an intense labor. She has gone nearly a week without any food or liquids. We wet her lips and mouth, the only remaining option. After years of hearing the vague term “advanced directive”, I am now living one. “I want the Good Lord to take me when he’s ready,” Grandma had told my Aunt Mary.

Day six. Somewhere around day five, my emotions erupted in waves, causing calm control one minute, then a stream of tears the next. I have watched the rooms fill and empty again. I met Chuck, who has since gone. I met two sisters in the cafeteria, one form Texas the other from Colorado. They appeared bewildered. When I saw them a couple days later, the bewilderment had vanished.

Today while tapping away at my laptop in the family lounge, I meet Matt. Matt comes with a whole pack of people who arrived last night across the hall in Ray’s old room.
We strike up the usual conversation and I learn his father is suffering from a rare brain virus with a scientific name that is impossible to pronounce.

As with Matt, I have become Julie the Cruise Director of the hospice ward. It is one accidental responsibility that comes from becoming a veteran. I have helped people find the free coffee machine, explained the wireless connection, and pointed out the family showers. 

It is brutally bitter outside as the winds have reached twenty below zero and the temperature is negative eight. I have brought socks and a flannel nightshirt for Grandma from Aunt Mary’s. I put warm socks on her feet and tuck the flannel shirt across her front. I do it more to comfort Aunt Mary and myself. As I’m ready to fall asleep tonight, I calculate that it is now eight days since anything has entered my Grandma’s body other than a light dusting of water on her lips and tongue.

And she still lives. And me?  I have become a hall walker, a sign reader, an eavesdropper.  I read Grandma’s chart when the nurses aren’t there. I take showers in the family shower, I visit Aunt Mary’s house for lunch or dinner, I straighten my room, sort my writing papers, pace, pace, pace.

Night is hardest as I lay alone listening to Grandma’s breathing. It changes or stays the same. It’s shallow. It’s soft. One night, she sounds as if she is drowning with each breath, buried in deep gurgles, and I seek help The staff is predictably compassionate, arriving when families come nearly unglued and offering a morphine shot or scopaline patch. 

I still wait with Grandma. Chuck’s father died sometime today. The room neatly cleaned.  No Chuck. No Dad. No one. A slate wiped clean as if no footprint had ever been made.

I devised all kinds of reasons that grandma would die on a particular day. Wednesday was a full moon, not for this year, but in the month and year grandma was born. This year, the full moon occurred on the same date that grandma was born. It seemed like good reverse symmetry. I tried more numerology games, curious to see if I could find any correlation between the year 1911 and 2009.  Keep the sanity…

Nearly one week has passed and I sit bundled up in the unpredictable recliner, scanning headlines on the silent TV while trying to reach an impossible deadline for a 1500-word article.  With a sluggish mind, words dribble out in between long stares. While I’m busy working, Grandma’s physician Dr. Cass shows up. She sits down next to Grandma and asks about her family. And me.

“Why are you the only one here?”

I explain, telling her that, like grandma, I am alone in life with mobile work and only goats at home. She smiles and asks more.

“What do you think about your grandma today?”

“She’s changed yet again from the night. Quieter.”

Dr. Cass smiles, something of a weary, knowing smile.

“I agree. In fact, I wouldn’t have mentioned this several days ago, but I would be surprised to see either one of you here tomorrow.”

She rises to leave and I thank her, mostly for her tender compassion.

While walking the hall later, I notice Marie’s mother Irene is now gone and I wonder when she died.  Ironically, it’s against the rules for the staff to tell me.

My aunt and her husband come nearly every day if his health permits, and on Friday, they arrive in the afternoon. I share Dr. Cass’ words. My aunt says they will stay longer today, eat dinner in the cafeteria and then head home. Today is day seven for me. For the first time since my arrival, I turn on the T.V. with the volume up. I sit mindlessly watching a pert Meg Ryan flirt with Tom Hanks. Probably not something Grandma would have watched. Near midnight, I turn off the T.V. and sit in silence with Grandma. The night is bitterly cold, and our normally warm room feels chilly. I watch Grandma’s slight breathing. It has slowed and I know Dr. Cass is right. Just before I climb in bed, a nursing assistant comes in. I wish I could remember her name. They have all been incredibly kind.

“Will you wake me if something changes during the night?” I asked her.

She smiles and answers yes.
 

After she leaves, I kiss grandma’s forehead, letting my tears run down her face. I climb on my makeshift foldout bed and bury myself in the white thin blankets. I turn so I can see the white winter landscape outside the large windows. It’s time.  I close my eyes and fall asleep.

Postscript:  Collette Braun Ott died January 17th at 1:30 a.m. after nine days at the hospice. She was 97.

Comment on this story using Facebook.