At your mother’s side in her dying days

This is the fourth installment in an occasional series focusing on the role reversal occurring in our society as adult children are faced with the challenge of aging parents.
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 after my mother had become so frail she could no longer make the trek from my parents’ back bedroom.Still, my father was loath 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.Unknown distance
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, had also ruined her appetite and musculature. Never a big woman, she now weighed less than 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, a retired nurse, had become indispensable, coming twice a week to bathe my mom and tend to her 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. 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 longtime stalker. Awful, yes. But a familiar darkness, by now.
Passing the time
There is nothing special about this tale of an aging parent except that, being a journalist, 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 this “As Our Parents Age” newspaper series.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 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.Heart of hearts
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 parents’ 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, 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 would spirit them home from the shelves for me.)She finished her working career in 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 a hundred 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.”

‘She won’t move!’
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 above 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.To contact staff writer Douglas Imbrogno, use e-mail or call 348-5115.The conclusion to this story will appear Monday in the Charleston Gazette.
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