March, 2009

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A Candle for My Mother, II

Thursday, March 26th, 2009

  In the shadows of the showy Beaux Arts Cathedral, I rose from a worn kneeler and turned back to contemplate the almost mystical glow of the votive stand. The small flames of the two candles I’d lit for my mother, the flickering pluck of them, the tiny shadows on the amber glass. I felt a pang noticing that they had grown discernibly shorter. I had set one wick burning for my mother, and then a second, lit from the first, for the daughter she had birthed and had now left grieving—for the essential truth that I was hers; for all of her that lived in me. On impulse, I tipped a match to the second candle and lit a third flame on an adjacent votive stand (another dollar in the box). A light that was made possible by the first two, I thought. One that would burn on. I knew the symbolism was simple and soft, even a little mawkish. But I indulged myself. My mother to me. My mother and me to this third symbolic flame.

Leaving the alcove–and that strangely moving statue of the Virgin Mary in young-mom mode–I set out into the baroque colossus of the cathedral, walking like a cat to mute the slapping reverb of my heels on the marble floor. The ornate and slighly culty grandeur of the place! The ornamented pilasters and balustrades; the bric a brac gone wild; the soaring stained-glass windows depicting martyrs in the throes of assorted agonies; the seas of burnished pews, vacant, weary, in shafts of late-afternoon sunlight; the metallic echoes of a few people—tourists and pilgrims—murmuring or praying softly. Granite columns, each as big as my bathroom; shrines tricked out in gold leaf; angels, saints, and the Holy Spirit gazing out of enormous dark canvasses. Front and center, a mammoth altar of black and gold marble, festooned with bronze latticework.

The overall effect seemed intended to leave no room for the human or the intimate. Perhaps it was meant to quash the faithful into awed submission by sheer granite and gold-leaf overwhelm. Still, I crept on. Here was another set of votive candles, an alcove devoted to St. Joseph. Here was an enormous padded chair, or throne, designated for the archbishop. Here was what had to be one of the world’s most towering organs, here a giant fresco featuring an eminence of some sort—an early-century Cardinal? Here, jarringly, was a rack with pamphlets —how to give money to restore a fresco or an arch, how to book a wedding or a funeral, how to support crusades against same-sex marriage and women’s right to choose. I paused, my blood stirring: had the brush with rightist Vatican morality campaigns pulled me out of my grief? But then I came to a series of alcoves announced, via wall plaque, as an international gallery of time’s most celebrated saints: Italy’s St. Anthony of Padua, Ireland’s St. Patrick, Russia’s St. Cyril, Germany’s St. Boniface, and a parade of others.

I stopped at France’s St. Therese of the Little Flower. My mother had a soft spot for St. Therese, I remembered. Her own mother had the same birthday as this French saint, and as my grandmother’s Catholic devotion deepened late in her life, she took to including in her daily Novenas special rosary-aided entreaties to St. Therese. She spent the last 12 years of her life—years 90 to 102, the sorry Alzheimer years—in a well-appointed nursing home that, as it happened, was named for the Little Flower.

Long before that, though, the fables of this early 20th-century French nun’s childlike simplicity, and the roses that rained when she died, had captured my mother’s imagination. She had kept from her own childhood a dog-eared storybook—from which she read to me—telling of the the marvelous things that might happen, flowers raining down, in a life modeled on Therese’s: honest and loving and faithful.

  No roses had rained for my mother, though. And none rained that day for me; even poised wet-eyed before the statue of St. Therese, I didn’t find my mother. “That isn’t surprising,” Melody observed when I told her about it. “You said your mother wasn’t especially religious.” That was true; the observant Catholic mother of my early childhood had drifted; I’d always suspected that the mettle of my mother’s faith had gone when neither her prayers nor her beloved brother’s abundant goodness had spared him from a deadly brain tumor at 60. Her attendance at mass had become erratic; she was all but unchurched except for occasional pilgrimmages to the renegade, social justice-y, flutes-and-guitars church in the center of the city. She’d had little interest in my offers to take her to mass, have a priest come to call. But she’d taken the trouble to write “Roman Catholic” on her living-will form.

There was also, Melody gently reminded me, the age-old truism of the elusiveness of what is actively searched for: Things come to you when you least expect it.

This was true of my visitation (for lack of a better word) from my mother, who came to me suddenly and quietly late one night as I was about to get out of the car outside my garage. I think constantly about this remarkable event; I need to write about it, and will.

But where is my mother now? I keep searching. I am unable not to.

And yet. Melody’s comforting metaphysics—all those intriguing quarks and vibrations, that pleasingly chi-like universal sea of energy—notwithstanding, I am also continually caught up short by the overwhelming feeling of utter loss, of a breathtaking finality. My mother was here in her life just weeks ago. She was here for nearly 85 years and now she isn’t. I poured a glass of wine tonight and was pierced to the core thinking of her … seeing her pouring her evening juice glass of Inglenook and spreading cheese on a few Pepperidge Farm butter crackers. The pleasure she took from it. The deep and inalterable truth of her no longer eating a cracker or coming to the phone.

And all of what I knew of my mother—what of it now? My mind brims, still, with all that I knew of the complex mosaic of my mother—that she loved Barbara Pym the novelist and orange Pim cookies, for instance. That she reserved the best spots in her garden for cosmos and nasturtium, possessed a peculiar fondness for “old man of the sea” knickknacks common in surfside souvenir shops, had been a favorite of all the barn cats on her Uncle Henry’s farm, had a finger that ached when it rained from a long-ago flattening in a doorlatch, preferred Tony Bennett to Frank Sinatra, had harbored a secret hankering to write, had saved in a box to the end of her life her baby shoes and her report cards and a Marx tin windup orchestra she’d adored as a child. All that I knew and took for granted … the thousands or millions of small shards of mom strewn casually or deeply in every corner of my memory—all of this was suddenly, wrenchingly, abstract, past tense, ephemera—trivia—from a house that no longer stood.

The candles are out. Perhaps it is true that, to paraphrase a 13th-century mystic, I was using a candle to look for the sun. But what I felt at that moment was that all that my mother was—the chapters and verses of her, the music of her, the singularity of her, the history of her, the petite plaid bent smiling person of her, the woman once a girl of her—is no longer on the earth. Not as my mother and not as a person. Not as she was.

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A Candle for My Mother

Thursday, March 26th, 2009

My mother’s death has unmoored me. How can this be? It’s not precise to say we weren’t close. But the terrain between us was marked by lapses and lies as much as by love, its prosperity thwarted by bad history, by temperamental differences, by my mother’s stunted life, by the looming and distorting presence of my father–and by my need to keep all of this at bay.

My mother was my first, my oldest, love; I knew her breath, her smells, her sighs, and the swish and thrub of her heart, before I knew anything else. For all the damage of my childhood, for all the distance of my adulthood, for all my ignorance of what really formed her marrow, there was still after my 49 years as her daughter such a vast lot that I did know of my mother, of her quirks and habits, of her thwarted ambitions and brimming heart.

My grief for my mother started many years ago. Her death, though, has brought the whole arc of my mother’s life achingly front and center in my own. But that’s only part of it. The feeling of being unmoored … The searing years of childhood coming back into view, and the arc of my own personal history thrown into bas relief. That … and the loss of the original thread, the core connection, the groundnote.

Can I find my mother? Melody asks. The promising new theories of physics, the old ones of Eastern philosophy and lyric poetry. Her body committed to earth in a gleaming oaken casket in a plot disconcertingly close to a freeway; her soul or energy released to the ether but somehow, somewhere still of the world.

And so I keep searing for a sense of connection with my mother–or perhaps for some semblance of what Melody calls grace.

Last week, leaving a cafe where I had quietly wept for my mother twice while listlessly eating a sandwich and reading the New York Times, I was moved to drive a few blocks south to the cathedral, a copper-domed Beaux Arts pile on a hill, and to light a candle for my mother.

Only after the wick had stuttered to a steady flame did I look around to notice that I was in a side chapel devoted to the Blessed Virgin Mary, the Mother of God. My mother’s candle glowed just a few feet from an oddly affecting stone statue of one of time’s most celebrated mothers, Mary, holding—and gazing with loving concern upon—her legendary infant.

For a moment, I couldn’t take my eyes off it. This Mary cradling her child to her ivory gown—the sweetness of it!—nudged loose stray motes of memory: A three-year-old me in a red sweater, sitting on my mother’s lap in a graceful wide-runnered rocking chair made by my mother’s grandfather. My plaid-pantsed mother gently kissing awake my three- or four-year-old pajamed self to come sit beside her on the living room sofa to watch a crooner—Shari Lewis? Ella Fitzgerald? Doris Day?—sing “Twinkle Twinkle Little Star” in fuzzy black-and-white on the boxy Zenith television.

I wanted more of these memories, but none came. Trying to summon them only brought less idyllic pictures: The cupboard-slamming ones, my mother’s desperate rages against the consuming needs of her children, the superciliousness of her husband, the mounting pains and unrelenting losses of her life.

I had feared that the candles I recalled from childhood might have been replaced by some sort of digital device. But there they were, skinny metal stands crowded with votives, with charred bits littering the amber glass bases and a narrow tin of long matches at the side. Amid a few dozen glowing candles, I had set my sights on an unlit one toward the middle, setting it ablaze after depositing in a slot the “suggested donation,” which was a dollar. (Were they once a nickel?)

Symbolism, if not religiosity, stirred in me. After being momentarily transfixed by the granite Mary with her infant, I turned back to the votives. I lit a second candle from the first—from mother to daughter, I thought. I knelt on a padded kneeler before a statue of Mary. I thought of my mother, of her afflicted life and the slog of her dying; I welled up again, softly. I summoned up some prayers from my early years in the pews: “Hail Mary, Full of Grace.” I mustered a small, hopeful approximation of fervency: Did Mary, in a heavenly place or in the universal ether, see my anguish? Was there a presence—a current of energy? an angel? my mother?—I might have pulled toward me for even a moment, with my candles and attempted prayers and tears?

I think I hoped a spritz of grace would waft my way, like the fragrant curls of incense the bizarre, possibly drunken, but pastorally effective priest had dispensed at my mother’s funeral mass. My feckless tries at prayer tacked effortlessly toward poetry, lines and stanzas running together willy-nilly in my mind. Mary Oliver: “What is there beyond knowing that keeps calling to me?” Emily Dickinson: “But most like chaos, stopless, cool,/Without a chance, or spar,/Or even a report of land/To justify despair” (Emily Dickinson).

I felt adrift. All of this felt somber; it had meaning. But I didn’t feel reborn, and I felt only marginally closer to my mother than I had earlier at the cafe with my tears falling onto the New York Times, or in the car at an intersection, where my heart ached as a white-haired woman with a walker navigated around a small bank of dirty snow outside a shop.

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The Physics of Grief

Wednesday, March 25th, 2009

I’ve had one visit from my mother, the night after she died. It was extraordinary (and I do need to write about it).

But where is she now?

My grief counselor–a friendly hospital chaplain named Melody who came packaged with the hospice program that my mother was part of, if only for a slender few days–talked to me a few days ago of quantum physics, of breakthrough theories of time and space, of how energy might change form but will never dissipate, can never be destroyed.

This broadminded take on metaphysics clicked so perfectly with my own expansive spirituality –and was so unexpected from a Lutheran seminarian–that I looked at Melody in wonder. I had long ago left the clutch of catechism and the drone of mass for a more open and holistic spirituality. The vibrating strings and universal energy flows embraced on the frontiers of physics, much like the vital chi of Taoists, felt profoundly and intuitively true to me–and as lyrical an entree to the transcendent as a poem or a moonrise.

I felt immensely grateful to curly-headed Melody, who had entirely dispelled my early apprehension that she might prove to be too chatty, too chummy, too Lutheran, or otherwise unable to grasp the warp of my quirky temperament, the complex woof of my blighted heart. She seemed as oddly, likeably wise as the Dalai Lama. As she offered her surprising ruminations–on “the universal sea of energy” and on “the many ways of finding or understanding grace through grief”–I had a sense of something nourishing, something necessary, radiating warmly and deeply to my core.

Grace, Melody said again; what it means is different for everyone; how you find it is by continuing on grief’s journey. Grace–I found it lovely to contemplate, both the word, which seemed to carry a balletic elegance, and the concept, shrouded for me in appealing propositions having to do with healing and affirming, soul-deepening and coming to wisdom. Grace is another term I didn’t often use, although its essence thematically suffused much of the poetry I loved best: Mary Oliver, among others.

Could I find my mother’s energy in the world, Melody asked? Could I connect with it, maybe find ways to gather and magnify it, or take parts of it into (unto?) myself? That is the way, she said, toward grace.

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Big Mess With Mom: The Story

Tuesday, March 24th, 2009

The day my mother was packed off from hospital to care center found me repeating The Story again and again. This had come to be the drill, whenever new health care providers or social workers appeared in the picture.

My mother’s health care history was not only a groaning database of doctor consults and hospitalizations, lung function tests and labwork, EKGs and CT scans, dexas and mini-mentals, pulmonary therapies tried and medications taking up two square feet on a countertop. It was also a train wreck, an obstacle course, a Rubik’s cube. It was a ruinous game of chutes and ladders tied to deep furrows of personality and habit and most of all to the tangled skein of her marriage. It was no exaggeration to say that her well-being had become hostage to her husband’s ineptitude, selfishness, and slipping mental gears–and his fury at both his burdensome wife and her meddlesome daughter.

Over and over, I tried to make sure people entrusted with any part of my mother’s care grasped the intricate and messy complexities of her life: her limitations, his hinderings; her profound vulnerability, his minefields and roadblocks. It exhausted me to keep doing it. But without either a power of attorney or guardianship for my mother, I was consistently at a disadvantage. My attempts to intervene on my mother’s behalf often came a cropper because I couldn’t whip out a duly executed power of attorney document. The ace in the hole I did have–my mother’s health care directive, naming me and my sister as prevailing decision makers in the event of my mother’s impairment–seemed to be given short shrift.

That my mother’s memory and judgment were impaired there was little doubt; every doctor who had met my mother said they would testify to that effect if I went for guardianship. Yet my mother, unaware of her misfiring synapses, continued to be treated as though she was capable of making her own decisions, with my impaired father—who worked hard, and often successfully, to fool people into seeing him as wholly functional—riding shotgun.

I wanted–needed–the doctors to get it; if I was to gain any traction in my efforts to ensure my mother’s well-being, it meant bucking not only my mother’s confusion but my father’s overt resistance. And so I kept telling The Story, the action-packed tale I referred to privately as Big Mess With Mom (the title I’d scrawled on a file cabinet bulging with mom-related folders). The Story: Of her losing battle with emphysema (with a dementia subplot) and my flailing (and often failing) attempts to slay all the dragons of hardship and misery (mostly my father’s doing) that were in the path of this increasingly frail and vulnerable woman.

With the hospital social workers, I took a deep breath. Here goes, I thought. Another attempt to shorten into a pithy and useful tale the excruciatingly steep and rocky journey of the past three years.

The Cliff Notes version would look something like this:

My father’s bad behavior, my mother’s dodgy mind, pointless pulmonary rehab, the downward spiral through missed medications and rotted food and stairway falls, the pitched battles with my father over the air conditioning he wouldn’t turn on and the accessible shower gizmo he kept taking off.

 

The Husband Run Amok: The Leaving His Wife in a Hot Car debacles, the Mismanaging The Oxygen catastrophes, the Harassing of the Home Health Aides saga, the Trying to Keep the Daughters Away chapters, the Writing Bizarre Notes to the Daughter kerfuffles, the Cancelling His Wife’s Doctor’s Appointment episodes.

 
The doctors who didn’t get it or didn’t want to get involved, the lawyers who pressed us to get guardianship but warned of balky judges, the county social workers that needed things to get worse, the urine-soaked clothing, the eventual horrifying crisis, finally the intervention from the county, the transition into rehab, the triumph of getting my mother into assisted living … and the despair that my father went with her there.

 
And up to the present: Her decline, his hostility, her cheerful quasi-lucidity, his brooding mental tangles, the reality that health care decisions would now have to happen without them, the good news that mom has a living will … and that I am prepared to do everything I possibly can to help my mother in this hardest hour of her life.

That day, circumstances required me to tell The Story (or chunks of it) to a social worker, chaplain, and hospice planning team at the hospital; and to an admissions director, social worker, nurse manager, and night nurse at the care center. My parents’ impairments had become more profound, and more obvious; still, many of those on the scene in the last few months of my mother’s life continued to put them in the driver’s seat. As evidence, I need only note that when my critically ill mother was first admitted to the hospital on the day after Christmas, the staff had initially heeded my father’s instructions that I not be notified at all.

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The Last Week of My Mother’s Life

Monday, March 23rd, 2009

I should write about the end of it all. About that last, long, searingly memorable Saturday night when I kept my mother company as evening turned to night, as distress blossomed and abated, as love shone, as loneliness lingered, as tears flowed, as frost spread across her window.

About the next five days–her last, two of them in that horrible room and three in a far better, even lovely one.

About the last two days. About the night of her death.

All of this so deeply impressed on me, and in me.

portBut for some reason I don’t understand well, I just can’t revisit any of these experiences yet, at least not in any more depth than I have already managed to do. The memories are intense; some are comforting but on the whole they are heavy with disquietude. They go to the core of my grief, with its thick gumbo of sadness and regret and longing and guilt and anger and love stretching back to childhood and into the pain of now and into the unknown and the unfathomable. Writing about these profound memories will very likely be cathartic and clarifying, but right now it feels overwhelming.

I do want to remember. I want to gather the fragments of memory before they grow faint. But it feels deeply burdensome right now to have corral them into sentences and paragraphs. It overwhelms me.

I have so much else that is pulsing toward the page. The things I am not ready to write about have begun to feel like a millstone ’round my neck, pulling me away from writing.

Moving on then, for now. In time, I will circle back to those searing final experiences, the last week of my mother’s life.

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My Mother’s Last Saturday Night

Saturday, March 21st, 2009

I rue that my mother spent most of the last month of her life in in a woefully small and dispiriting room, a room so drafty–could this truly be the room allotted to a patient with respiratory disease?–that pillows were banked against frost on the inside of the window.

The room was, in truth, a dump: chaotic, slovenly, every surface choked with clutter. There was barely space to pull up a chair up alongside her oxygen tanks and special bed. The television was nearly buried under tubes and and pads; the closet blocked by a nebulizer stand. With her nightstand jammed in a corner away from the bed—at least until I commandeered one of the aides to help me shoehorn it back next to the bed–, even my mother’s blanketed form became a repository for miscellany: Extra sheets and clothing were heaped on her legs, a brush and magazine on her belly, a heavy blue telephone wedged against her side. The vases of flowers I brought disappeared under a heap of towels. The photos I gave her vanished into a drawer, or under the bed, along with the cheerful cards I left out so that my memory-impaired mother would know I had been there and would return.

We would have 9-12 months, the doctors had told us. We knew it was not a promise. Still, they were off by a good mile. When I came to know this for certain was on a bitterly cold evening in late January five days before my mother died. On what turned out to be my mother’s last Saturday night in the world, I spent six poignant hours with my mother in her appallingly disheveled room, her bed in blue-tinged and weary-looking fluorescent brightness, my chair in shadows, blankets tacked over drafty windows, CNN on the television, our voices rising and falling softly in intermittent conversation, aides coming and going, frost gathering on the pane and dripping onto the floor.

When I arrived in her doorway at about 4:30, my mother was sitting up in her bed. Cradled in her left hand was the little stuffed bear I’d brought to her in the hospital. Her head was tilted down slightly to look at it, and she was stroking its contemplative brown face with the fingers of her right hand.

She’d been glad to see me. “Well, if it isn’t my darling daughter!” she said, beaming an expansive smile toward me. She was in her usual white hospital gown with the small blue flowers; a blue knit warmup jacket I’d brought her was crumpled around her thin shoulders. She looked clean, and –did I imagine it?–there was a hint of color in her cheeks. Her white hair, in its pert new bob, looked soft and fetching. The TV was on, loud–CNN’s anchors segueing from a suicide bombing in Somalia to the remarkable tale of the American Airlines jet that had recently landed, improbably, on New York City’s Hudson River, its passengers clambering to safety in the most literal way on a wing and a prayer.

The indelibility of that night. The desultory but companionable quality of it. The heartening perk and wit of my mother, no matter the usual repetition of her loop-de-looping memory. Her entertaining stories, though none of them new, of her happy childhood years. My efforts to improve her disastrous room, sweeping towels and tubes into drawers, unearthing cards and photos, cramming pillows against the frosty windows. Aides bringing in dinner, meds, rags to mop the puddles of melting frost near the window; eventually, taking note of my mother’s worsening cough (“It really is cold in here,” a handsome young aide named Lucas comments) they wheel in a space heater. My fury about the egregious unsuitability of the room, though I hide it from my mother.

My mother’s mildly monotonous chime of reiterated questions about what I’d been up to making a surprising turn: She wanted to talk about my work, did I still like being self-employed, what had I been working on lately, was I still making a go of it ten years in. She expressed pride that I had struck out on my own (“You’re your own boss … you’re self-sufficient; that’s wonderful,” she’d remarked, as I basked in her interest and the sudden clarity of her mind). Then, more remarkably, her trenchant interest in the nuts and bolts of self-employment: did I have a sufficiently sturdy retirement plan? “I worry about you,” she said.

“Don’t worry, Mom,” I replied.

“I worry about you,” she repeated. “I wish I could help you. I would if I could.”

The surprise of that exchange … and then the heartrending crisis, the moment when she discovered she had no vision in her right eye—her one good eye! she said in a plantive and panic-edged voice. The summoning of aides, the late-night visit of a hospice nurse, the doses of ativan and dollop of morphine. The sitting by my mother’s bed as she grew drowsy, as I flipped channels, as she suggested maybe I could stay all night, as she told me in a playful but poignantly small voice that she didn’t want to leave.

And then the end of it: The sitting in the darkened lobby with Laura, the hospice nurse with the mien of someone who lived alone and cared too much, the empathic on-call angel who’d ventured out late on a bone-chilling January night to answer my tormented call about mother’s eye. Laura had waited for me in the lobby as I said goodnight to my mother. We sat in facing wingback chairs in murmured conversation before heading to our cars.

I was bone-tired and heart-heavy and deeply unsettled. My mother’s heartrending anxiety about the loss of her “one good eye” (which the hospice nurse ascertained had happened some time ago, probably a result of the bleeding disorder; it seemed my mother kept forgetting and rediscovering it). Her touching plaintiveness, tugging me to stay. And what of her unexpectedly lucid preoccupation with the state of my 401K? It seemed to have come out of nowhere.

“Well,” Laura answered in her hesitant, gentle way, “I think that maybe what your mother was really doing was expressing her need to know about whether you’ll be alright when she’s gone.”

I choked up, tears streaming, the truth of it unfurling within me. “It’s very common toward the very end in hospice patients,” Laura was adding. My heart lurched; everything in me went heavy and soft. Yet this was something I’d already known, I realized. “We’re not talking about 6-9 months, are we?” I finally croaked out.

“Oh, heavens no,” Laura said, her voice soft. She saw that I was shivering, and covered my cold hand with her warm one. My mother was profoundly, even impossibly frail, she said; frightfully tiny, almost nothing left of her, breaths so hard and wispy, so little fuel for a famished heart. “I was shocked by the feebleness of the woman I saw when I walked into your mother’s room.” Six to nine months–“I’m so sorry, Mia, but no.”

The truth of it. But … “But she was so cheerful,” I said to Laura. “She was so amazingly lucid.” Not just that. ” She was so upset about losing her eye–her one good eye, she kept saying: ‘What am I going to do without my eye?’ That’s what she said.” Her anxious, woeful laments about her eye had cut me to the quick; the loss of her vision, and her rue about it, somehow seemed the cruelest of all the hard, sad things that had unfolded in the past few years.

Her strangled breaths, her shredded lungs, her vanishing bones, the oxygen tether, the wayward shamblings of her bladder and bowels, the shrinking of her life to a circumference barely bigger than her bed–none of the trials and indignities that had befallen my mother seemed as painful, as cruel, as significant, as the failing of my mother’s vision.

My mother the voracious reader, the inveterate camera-clicker, the eager observer of the world beyond her door; my mother the lover of extravagant blooms and vivid hues and the endless variety of the human face—“no two alike!” she would marvel. My mother with her treasured morning newspaper, her CNN, her calming bedtime tea of Everybody Loves Raymond or reruns of Frasier; her heaps of photo albums and scrapbooks: the lovely silver-toned pictures from her vibrant early years, the fuzzy Kodacolor snaps that she culled into a bright and glossy record of all that came later.

“She still wants to see things,” I said again to Laura. “She wanted me to leave the door open. She’s so much better than she was in the hospital.”

Laura was quiet, her gaze level and kind and, I noticed, glistening in the corners.

“”She was so wistful and hopeful about her eye,” I reiterated. “She kept asking if it could be fixed.” Even as I rattled on, though, I knew. And it came to me then that some part of my mother, witting or not, quite possibly also knew. “What am I going to do without my good eye?” she had asked with such plaintiveness. “Will I get it back?” “We don’t know,” Laura had answered simply, with touching tenderness. “I hope so.”

My mother had been quiet for a moment. When she spoke, she sounded small and possibly scared. But what she uttered next was not another distressed lament about her eye. “Will you pray for me?” she’d asked.

A short time later, as I kissed her goodbye, as we exchanged “I love yous,” she’d asked again if I might stay. “I’ll be back tomorrow,” I reassured her. “Will you?” she’d asked, the question–edged with urgency, the hint of a plea—startling me. “I’m counting on you,” she said. The unfamiliar and disconcerting unease in her, something small, woebegone, little-girlish newly floating in this wrenlike white-haired wraith who was so heartbreakingly my mother. As I turned toward the door she called to me once more. “Can you leave the light on?” she had asked.

I knew. The heaviness of it. The deep ocean of it. The dead certainty of it. “I’m so very sorry, Mia,” Laura was saying again as we sat in a shadowed lobby on what proved to be the coldest night of the year. In the window over her shoulder I saw the glow of a large winter moon, nearly full, on the snowy parking lot. “I know this is very hard to hear,” Laura continued gently. “But I can’t imagine your mother lasting more than a month. Probably less.”

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My Mother’s Last Trip, IV

Friday, March 20th, 2009

We didn’t, of course, know how short her remaining time was to be. But it is hard to make peace with the fact that she was able to experience hospice’s happy float for a mere week before she died. Instead, she spent the first 21 of her last 29 and 1/3 days enrolled in a mildly taxing regimen of post-hospital rehab.

The very idea of rehab for my mother was preposterous. But she’d had the right sort and length of hospital stay to garner a primo Medicare bennie: If she went on to a rehab round, Medicare would cover every aspect of her care for 21 days, including the $250/night room charge she would otherwise pay out of pocket. We may as well use the all-expense-paid days, everyone counseled; such a deal! We’d also gain time to plan mom’s hospice care–the months of hospice we thought she’d have–along with a strategy for dealing with our impaired and obstructionist father.

As a result, my mother, who entered the care center on death’s door, spent the first three of her last four weeks exerting herself each day with Janet, a plus-sized physical therapist of kindly disposition whose daughter and my sister’s daughter had once appeared together in a community theatre production of The Wizard of Oz. With kindly Janet’s coaxing, my mother weakly flexed her emaciated legs each morning; she fluttered her arms up and down; she gamely buttoned up a sweater. By the end of the second week, she pulled herself–her grip tightening on Janet’s doughy arm, her legs buckling–to a standing position next to her bed.

Her wheezy exertions proved of no real therapeutic value. But in those weeks in the care center, my mother did rally to an extent that seemed startling. The improvement was not so much physical, although she did manage to pull off the ambulatory triumph her therapists needed to satisfy the suits at Medicare; my mother had walked five feet, Janet exultantly reported at the 21-day care conference. No matter that it was at a painfully shaky and shuffling gait, and was accomplished with the aid of a walker; no matter that it required her oxygen tank to be pushed to the highest possible liter flow, or necessitated several rest periods to quell her panting enough that she could continue.

What really changed, for a time, was her spirit. She perked up so much that the hospice team was called upon to reassure me that, yes, she was as gravely ill as before, the prognosis was the same, a late-inning rally wasn’t uncommon, the game plan and the dismal life expectancy had not changed. The perking up was almost jarring. She had a bit of appetite again. She took an interest in surveying her dinner tray; her interest in its contents was fleeting—“I know, ish kibbibble!” the young aides would tease her—but she could be persuaded to eat a few bites of sweet potato and yogurt, and she tucked into each evening’s ice cream treat with genuine glee.

Her customary “hello, lovey!” greetings were back, along with her gift for gab; no matter that she repeatedly uttered the same sentences and posed the same questions; an endless loop. She again took an interest in things, even if she remembered nothing. The inauguration of Obama was interesting, and always news to her constantly rebooting mind; ditto the stories her daughter shared, or the small dramas she observed in the care center hallway. “Leave the door open,” she insisted to aides with a coquettish air, “so I can see what’s going on.”

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My Mother’s Last Trip, III

Thursday, March 19th, 2009

Given how quickly she went, I will always regret that my mother didn’t start out right away in the soothing arms of hospice care–the coordinated, palliative ministrations aimed at making sure a terminal patient’s remaining days are as comfortable as possible. “Comfort care” was itself a comforting proposition. The more I learned about hospice, its philosophies and strategies–the more fervently I wanted it for my mother–the special nursing visits, the massages and music therapy, the extra baths, and the standing orders for ativan and morphine. All so that the end of my mother’s life might be a happy float downstream.

My mother, of course, was not going to achieve the hospice ideal, the gold ring of having a meaningful, self-directed “death with dignity.” Her cognitive faculties, and my father’s, had frayed too far for them even to board the hospice train in any active way. My mother had not lost all of her wits by any means. But she took in new information without absorbing any of it, quickly lost her way in conversation, and became befuddled when anything complex came up. She lived more or less affably in the moment, blissfully unaware that her short-term memory relooped every few minutes. She also could trot happily through reels of old memories that remained intact in what seemed to be a special archive in her mind; they were getting fuzzy, details dropping out–but of course they were already distorted from a lifetime of editing (and if the fact-challenged abridgments, which drove me crazy, had helped my mother endure her hard life, then it seemed only fitting that even less reliable variations should give her comfort as she lay dying).

Did my mother know she was dying? I do wonder about it. Was there a small firm patch of knowing somewhere amid the large sieves and small tangles, the consterning chutes and ladders, of her mind? Was there a knowing she felt, steadily or intermittently, a feeling in her vanishing bones, a whisper in her soul? At the very last, I sensed a shift in her, at once subtle and profound, and saw a new worry and preoccupation creep over her, and a little later a happy drifting. But it was like a curtain fluttering, or molecules rearranging themselves; if a clear notion about dying or death had ruffled her thoughts, she gave no clue that she had grasped it. But then thoughts flitted in her mind and then were gone; that’s how it was for her.

Denial, like selective memory, was a lifelong habit for my mother, and in the final weeks she repeatedly threw up roadblocks against bad news. At first it was just miserable for her, but when she weakly choked out the words “This is just gawdawful” into her breathing mask, there was resentment in it. She seemed to have given up, lost her will, the hospital social worker said–the closed eyes, the choked words, the untouched meal trays. I prayed that was true; the misery was real enough. But she came back, though barely; I think it was her habitual refusal to knuckle completely under.

She had little steam and seemed to accept her state of being bedbound and exhausted and feeble. She asked from time to time about what had brought her there, what had caused one of her nostrils to be stuffed rigid with gauze, how long she’d been there, and–most often of all, how long she was going to be there.

Her doctors realized quickly that she wasn’t able to follow, much less remember, their bedside chats about ailments and prognoses (and that my father was much the same). But even in her prime, she probably wouldn’t really have wanted to know. When a nurse let the word hospice dangle partway into a sentence before thinking better of it, I hoped my mother had missed it. But she went right to it, as though spotting a possibly invasive varmint at the gate: “Hospice?” she said, with a note of incredulity. Then, more anxiously: “Oh, Christ. That’s all I need.” I tried to talk her off the ledge: “She just meant making sure you’re comfortable, Mom.” She was lost within moments, but a residue of anxiety lingered even after she’d forgotten what had triggered it. “What is it we’re talking about?” she asked uncertainly, looking around the room. “Is there something I’m supposed to do now?” My father, who had been silent in his armchair, spoke up then, as though to clarify things: “Well, I don’t think we really know that,” he said, mustering an authoritative tone. “But when someone finds out, I’m sure they’ll tell us.”

And so the hospice plan went forward without them; A. and my sister and I met with the hospice team; I signed off on the plan.

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