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Learning to live as your mother dies

This is the conclusion of a story that began in the Sunday Gazette-Mail, telling of a reporter’s visit to his parents’ home to spend time with his family and dying mother.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 rag doll on this Fourth of July evening in my parents’ bedroom in the Cincinnati suburb where they lived. The local fireworks display had reached its furious grand finale, thumping the house with booms.“What do you want me to do, Dad?”I wished this was the moment, the moment she would die. Within the past year, the dementia that had afflicted my mother 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 of those 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, and 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, that 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.
Everybody and their mother 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, however, I find it’s a lot harder to maintain one’s equanimity on the front lines of a parent’s dying days.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 callused feet.
Then she looks up, trains her still beautiful, ice-chip blue eyes my way and casts, 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. Yet somehow you have to rally, even laugh.
We make group fun of the older sister who can’t handle dirty underwear duty, standing 10 feet back from the toilet action, daintily offering a fresh pair of Depends to another sister doing the actual cleanup. We praise to high heaven the younger sister who steps like a nurse into this breach, pulling rubber gloves on, getting down to work like a trooper.And on occasion, my mother will look up, and break into a Jim Carrey grin. We treasure these.I also try to recall my mother in her heyday. 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!’”Bearing witness
“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 prepared for my recent visit with my mom by reading an excerpt from this book, wanting to be strong.“Then really ask yourself,” he 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 last summer’s 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 knew from experience with a friend who’d died recently that what I thought a dying person needed might not be what they really did need.And what was that?“I think,” 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, and I try to follow such practical advice during my visit. There are moments when it only goes so far, though.The day of my departure, I wheeled my mother into the sunshine near the big oak tree in my parents’ front yard. She looked at me mutely, stared off, looked at me again. I wiped her mouth with a tissue.I don’t understand this, I thought, and more thinking wasn’t helping. I remembered another of the articles on dying, 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?” Ostaseski asks. “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 is time to go. Waiting in the sunshine.

Joanne Marie Thesing Imbrogno was moved into hospice respite care last week.To contact staff writer Douglas Imbrogno, use e-mail or call 348-5115.

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