First published in the Charleston Gazette on July 28 and 29, 2002, as part of a series titled “As Our Parents Age.”
By Douglas Imbrogno
The day goes by incredibly slowly while waiting for your mother to die.It was the Fourth of July and she sat in a TV den easy chair, propped up on all sides by pillows. She dozed most of the time, in front of an all-day marathon of old “Twilight Zone” episodes. My father watched and napped occasionally, stretched out on the den sofa, as aliens invaded the earth or people made pacts with the devil.
My mother’s wheelchair sat empty at the door to the den. Afternoon sunlight shone upon a nearby hospital bed that rested in the middle of the living room of my parents’ suburban Cincinnati home. The bed was new since my last visit a few weeks before. A hospice worker had suggested it ever since my mother had become so frail she could no longer make the trek from my parent’s back bedroom.
Still, my father was loathe to put her down at night between the bed’s metal grab bars. Partly, he didn’t want her away from him in the night — she could die at any time as she moved into the end game of the dementia that had savaged her brain these past 12 months. And partly, we kids had come to conclude, he still wanted the touch of his wife beside him in their bed these last days, weeks or months of her life.
My father would put her into the hospital bed for naps, but even then she needed to be watched. My mom could still rouse enough animal energy to swing her legs over the side and sit up. After that, all bets were off. She could easily break multiple bones if she fell.
The dementia that had inexorably been shutting off her brain, like lights going off across a blacked-out city. It had also ruined her appetite and musculature. Never a big woman, she now weighed under 90 pounds. It was heartbreaking to see her stick-thin legs and arms.
Eating was a supreme chore. My father would chop up a meal such as microwaved Stouffer’s chicken and noodles — he was too weary from caring for her to cook his vaunted Italian meals anymore — then wrap a bathroom towel around her neck. Laboriously, he’d serve her a dozen spoonfuls, between sips of orange soda. Then she’d lose interest or forget to open her mouth, staring off into some unknown middle distance.
Anyway, she got most of her nutritional needs from the Ensure my father poured into a tube that ran into her stomach. Without the Ensure, and despite the meals that all of us tried to feed her, she would be dead in a week or so, her caregivers told us.
The outside help had grown considerably as my mother had gotten worse. There was a home-visit hospice nurse now, and a separate caregiver who came by for a few hours twice a week to give my dad relief from his constant, exhausting oversight.
My mother’s sister, Pat, a retired nurse, had become indispensable, coming twice a week to bath and tend my mom’s many needs. My four in-town brothers and sisters made regular weekly visits while a fifth drove in often from his Louisville home. We hoped for a quick, peaceful departure. We were all agreed that except for a fall or dire physical calamity, we would not let 911 cart her from the home to a hospital or nursing home from which she would likely never return. Her bed, her living room, was where she was to die.
Or, if her care needs grew too overwhelming, we’d move her to a nearby residential hospice, which my sisters had visited and approved of for my mother’s last days.
A familiar darkness
Yet the violence and the violations her dementia had visited upon this feisty, intellectual woman had been so many and so painful to watch, that the family was a little punch-drunk. We were not exactly expecting the very worst. But if something even more terrible happened, it would be like a visit from a long-time stalker. Awful, yes. But a familiar darkness, by now.
There is nothing special about this tale of an aging parent except that, being a professional writer, I have the chance to write about my mother dying. A thousand other families reading this are going through the same anguished motions without an audience. It is the one time the cliche is really true — we are all in this together.
This dying business, I mean.
“It’ll be cathartic,” said the editor who was pulling together stories for a newspaper series titled “As Our Parents Age” for the Charleston Gazette, where I worked in Charleston, West Virginia.
I wasn’t so sure.
But sitting down in front of my Powerbook to type out these words at my parents’ dining room table during my Fourth of July visit in 2001 did seem to bring a smidgen of order and comprehension to the disorder and disintegration in my parents’ house.
Or maybe it was just a way to pass the time between the hours my mother dozed and awoke in the morning -— and then the whole heavy rock of her care had to be shouldered up the hill for another day.
Besides all of that, I wasn’t taking the full brunt of this. I was the out-of-town son who came in for a weekend, or most recently for a week of family leave, to offer what help I could. When Sunday afternoon rolled around, I could escape down Interstate 275, back to West Virginia.
I’d feel exhausted, depressed and — to be honest — relieved at going. And guilty about feeling relieved. My Dad, my aunt, my brothers and sisters who live in Cincinnati, had to remain, caring for my mother week in and out, watching her fade away, day by day.
First, her language and reading skills began to misfire about two years ago. Then, they went out almost completely, except for stray words and phrases, except for cries of pain or despair. Then her ability to walk. Then her bowels. And so on.
On a bookshelf in my parent’s living room, I could read a few of the titles of the many books my mother devoured when she could still read: “Smilla’s Sense of Snow,” “One Hundred Years of Solitude,” “The Sheltering Sky.” They were among the hundreds of books and magazines around the house, evidence of her omnivorous love of reading and knowledge that would, because of the strong glow it cast, help inspire me to become a writer.
A writer was what, in her heart of hearts, she wanted to be. All of Toni Morrison’s books stood on one part of the shelf. My mother felt a kinship with Morrison, since they were born about 16 months apart from each other and both grew up in Lorain, Ohio, on the shores of Lake Erie.
The closest my mother had come to the writer’s life was a few articles and poems published here and there, plus her roaming intelligence, and a remarkable, museum-quality collection of bookmarks (if you can’ t write the books, then perhaps you collect evidence of them).
She was among that generation of post-World War II war brides who, in the 1960s, broke out of their suburban warrens of household life and struck off into the working world. Characteristically, her first job was with a new book chain just starting up called Waldenbooks. (Growing up, I always had the latest, greatest books to read as she’d spirit them home from the shelves for me, like reading Gabriel Garcia Marquez’s masterwork “One Hundred Years of Solitude” in hardback the year it came out.)
She finished her working career at an insurance office in downtown Cincinnati. She’d raised six good, decent kids. She retired and came home to raise a hundred more plants — she had the greenest of thumbs — and to read hundreds more books and magazines.
Then, piece by piece, the dementia began to deconstruct her brain. What was left was all that you could see around the house and not much else.
A bookmark depicting the face of Toni Morrison had pride of place on the living room bookshelf. A photograph of the author’s intelligent, serious face gazed out at you beneath a line that read “Women Writers” and then this quote from Morrison’s “Beloved”:
“Beloved you are my sister , you are my daughter , you are my face; you are me.”
In years past on the Fourth of July, my mother, my wife and our two children and I would haul lawn chairs from my parents’ home to a grassy knoll nearby. From our perch, we had prime seats to watch the fireworks exploding overtop a nearby park, plus see the tiny multicolored blooms erupting over distant towns.
This Fourth of July my father had put my mother to bed at 9 p.m., now her usual bedtime. The local fireworks display began about an hour later. I sat reading on the living room sofa, doubting whether my mom would even understand anymore the bursts of color and the rolling booms that now shook the house.
My ears perked up at an unusual sound amid the familiar fireworks clatter. A ‘slap-slap‘ sound. Then it came again. It was coming from the back bedroom. I knew immediately what it was.
I raced to my parents’ bedroom. My father knelt on the bed over my mother, lightly slapping her face. “She won’t wake up, she won’t move!” he cried.
He lifted her arm and it fell back to the bed like a damp washcloth. More slaps and pinches had no effect.
This was it, I thought. In one of those curious, bizarre quirks of cosmic timing, my mother seemed to be dying at exactly the moment that the local fireworks display erupted into its climax.
The house’s walls and windows rattled with multiple cannon booms of fireworks, as my father, who has a heart condition, grabbed for a tube beside the bed and downed a nitroglycerin tablet. The grand finale, I thought. How strange all of this is.
My father slapped my mother’s cheek, once, twice. Then again. He shook her, called her name, anxiety rising in his voice. “Honey! Honey!!” he called out. I pinched the skin on her arm. Nothing. She lay like a ragdoll. The fireworks display had reached its furious grand finale, thumping the house with booms.
“What do you want me to do, Dad?”
The Book of His Life
I wished this was the moment, the moment she would die. Within the last year, the dementia had wrought its worst damage. She was rail-thin, unable to walk, unable to eat except through a feeding tube or hand-fed in small dollops. She recognized few if any faces who looked into her searching, usually sorrowful eyes. It was time. She was in her own bed. Her husband of 51 years was beside her.
I realized that my frantic father could not answer my question. He was about to lose his chief, perhaps his sole, reason for living. However fractious their marriage had been — it had been no picnic watching their bitter, ever unresolved battles year in and year out — they had been companions for life. Only she knew his stories. Only he knew hers. Together, those stories were the book of his life.
“I’ll call the hospice nurse,” I told him, telling myself that after that call I would place other calls. First, to my five brothers and sisters. Then, to my aunt and uncle in town. To come to my mother’s deathbed.
I dialed the 24-hour hospice line. As a nurse came on the line, I heard my dad call from the bedroom: “She’s awake!”
His meaning being, of course, she was alive.
I told the night-duty nurse what had happened. Sometimes that happens with dementia patients, the nurse said. Their brains just shut off. I wondered whether my father’s slaps had revived the erratic mechanism of my 72-year-old mother’s brain, just like thumping a broken-down TV to flick it on.
We agreed that my mother’s hospice nurse would come by in the morning to check her out and I hung up.
The fireworks had stopped in the city park. I went back to the bedroom where my father had eased back into bed beside his wife. She looked wild-eyed from whatever place she had gone off to. I leaned over the bed, stroked her strands of brittle gray hair, kissed her forehead.
I said goodnight to my father and left.
As a retired Christian, I have no specific God to whom to fling a prayer or raise a fist. ” It’s just life and death,” I respond, almost automatically, when people’s faces cloud over and they tell me how sorry they are when I have occasion to mention my mother’s condition. Everybody and their mother dies, after all.
In practice, though, on the front lines of a parent’s dying days, I find it a lot harder to maintain one’s equanimity. I prepare for these visits by meditating regularly. I meditate downstairs as my mother dozes. This offers a reserve of composure as my dad and I hold her over the toilet and she resists, crying out in despair at this end-of-life indignity.
It helps me keep my cool when my dad loses it, as he often does, and starts shouting at us kids, my mom, the universe. It gives me more staying power and presence as I stroke her hand for a half-hour. Or take off her socks to massage first one, then the other of her calloused feet.
Then she’ll look up, train her still beautiful, ice-chip blue eyes my way and cast, for the umpteenth time, a look that says, “Why?”
Then, she actually utters the word in a high, frail voice, her first and last recognizable word of the day: “Why? Why-why-why…?”
One afternoon, my sisters, putting her down onto the toilet, think they hear her say, “I’m dying.” On another day, she utters “Mother!” as if crying out for her own long-gone parent.
The heart breaks over and over.
All it Said Was ‘Beep!’
Yet somehow you have to rally, even laugh. We make group fun of the sister who can’t handle dirty underwear duty, standing ten feet back from the toilet action, daintily offering a fresh pair of Depends to the sister doing the actual cleanup. We praise to high heaven the younger sister who steps nurse-like into this breach, pulling rubber gloves on, getting down to work like a trooper.
On occasion, my mother will look up, and break into a Jim Carrey grin. We treasure these.
I try to recall my mom in her heydey. I remember a favorite line she wrote me once during our decades-long correspondence: “I asked my computer what it was all about. All it said was: ‘beep!”
“Put yourself directly and unflinchingly in the dying person’s place. Imagine that you are on that bed, facing your death. Imagine that you are there in pain and alone,” writes Sogyal Rinpoche in “The Tibetan Book of Living and Dying.”
I prepare for my visit with my mom by reading an except from this “The Tibetan Book of Living and Dying,” wanting to be strong, knowing from experience I might not measure up. But it helps to gear up.
“Then really ask yourself,” Sogyal Rinpoche continues, “What would you most need? What would you most like? What would you really wish from the friend in front of you?”
The excerpt comes from a special section on “Care for the Dying: the Wisdom Way,” in the Summer 2001 edition of the Buddhist journal Tricycle, and is beautifully titled: “On Being a True Friend.” Isn’t that what we want in our dying days, to be surrounded by true friends?
“I think,” Sogyal Rinpoche concludes, “that what the dying person wants is what you would most want: to be really loved and accepted. I have often seen that people who are very sick long to be touched, long to be treated as living people and not diseases.”
He suggests a lot of touching, holding, looking into their eyes, breathing in rhythm and gentle massages: “The body has its own language of consolation; use it fearlessly.”
This is good, I try to follow this practical advice during my visit.
There are moments when it only goes so far, though. The day of my departure, I wheel my mother into the dappled sunshine beneath a big, gnarled oak tree in my parents’ front yard. She looks at me mutely, stares off, looks at me again. I wipe her mouth with a tissue.
I don’t understand this, I think. And more thinking isn’t helping.
I remember another of the dying articles, one titled “What to Do When the Going Gets Rough,” by Frank Ostaseski, founder of the Zen Hospice Project.
Too many people die in fear and distress, he says. The people around them are often distracted, reminded by the dying person of their own death to come. They’re swept away by the drama of it all, unable to offer meaningful spiritual support, he says: “What is it to provide this support? I would say first and foremost, it’s about bearing witness. And that means not turning away when the going gets rough, staying present in the mystery and unanswerable questions.”
So, I sit with my mom, until it’s time to go.
Waiting in the afternoon sunshine.
POSTSCRIPT: Joanne Marie (Thesing) Imbrogno died peacefully Sept. 1, 2002 at Hospice in Cincinnati, surrounded by her sister Pat and her extended family.
A song in honor of my mother, written for her memorial service and performed for the first time there, then recorded later for my CD “Saint Stephen’s Dream” by garage cow ensemble.