Maternal Dementia

…will abolish just what’s bothering you, as the song goes. Never mind that it’s a song about shoe polish. My guess is nail polish has the same uplifting capacity. Much like my aunt who proselytizes the restorative power of a good hair wash, I’m a believer that a pedicure is sometimes all you need to set things right. A good soaking of the feet, scraping away the dead skin, trimming of cuticles and cutting/filing the nails and then the deep red or sweet rose or mysterious vamp that reminds you every time you look down that you’re the kind of woman who makes the time to care for your feet.

Before I went home to take care of my ailing mother, a friend told me to take a picture of her hands and feet. “Because years later,” she said, “I couldn’t remember what my mother’s hands looked like.” It’s not so silly, except I can’t imagine forgetting this detail. My father’s well-manicured hands with his long and elegant fingers are something I can picture exactly now, as though I’d held them yesterday.

You all must be so tired of hearing about my dead mother. But I don’t know what else to write about. Everything seems banal compared to what I have been through these last weeks. I’m still losing my mind. The kids have made a train wreck out of my life. De-facto’s a prince, or then he’s not a prince. Short-pants is angelic and Buddy-roo is impish. It’s the same as it always was. Except it’s not the same.

I know this is a question of time. I still miss my father, but the constant ache and daily despair about his death no longer plagues me, though the occasional sting of wishing he was here when something important happens has not lost its venom, even after more than 20 years.

I try to do normal things. I stop to buy a baguette. “It’s been a long time since we’ve seen you,” says the baker’s wife. I tell her I’ve been away a lot. The way you say this in French is “J’avais beaucoup de deplacements.” Yes, I’m feeling very displaced, I think to myself in the pseudo-language of Franglais, a butchering of both French and English versions of a similar-but-not-quite-the-same words. Another good example: déranger, a disturbing verb in both languages, but more often used as an adjective in English. Sometimes in my head – or even out loud, to like-minded friends – I mumble, “I hope I’m not deranging you.” It’s a funny little language we expats use to effect a hint of sarcasm.

“And it was good, all your traveling?” she asks.

I want to tell this friendly, familiar local baker-woman that I’ve been gone because I went to help my mother die. It feels like I should tell her, she knows me well enough to notice I’ve been gone. It feels like she might care, but that doesn’t mean she will or that she should. Just because I am so tender doesn’t mean I should blurt it out and then have to continue the conversation, the answering of questions, the prolonged explanation to a kind stranger who has no context.

“Yes,” I say, “it was all good.” I don’t want to derange her with my grief.

Keep doing normal things. I make soup. Except it makes me think of those soups I used to make for my mother the last nights before she decided to stop eating. I do laundry. Except folding the sheets makes me think of her. Hanging the little socks on the drying rack in my living room makes me think of the only time she wrote something other than praise after reading one of blog posts, the one about our decision not to buy a new dryer when ours broke down. “You’re a busy working mother with two children,” she wrote, “so buy yourself a dryer.”

I miss seeing her name on emails in my box. I’ve actually left one of her last messages in my Gmail account, and occasionally I mark it as unread, so I can read it again, like it was new, like she just sent it. I know this is pathetic.

I get my haircut. I remember getting a trim the day before the last time I went to see her, how I cried through the entire appointment. I go to the aesthetician to get a bikini wax. This doesn’t remind me of my mother at all but it hurts so much and I’m so spent that I cry anyway. “Does it hurt that much?” she says, kneading the ball of caramel in her hand. “Yes. It hurts that much.”

Raquel, the Brazilian manicurist/pedicurist who comes to my home to attend to my nails arrives late as usual, so this feels a little normal. She massages my feet. This reminds me of seeing my mother’s face settling into a feline smile as I pressed my thumbs into the balls of her feet, massaging them for her before she went to sleep. Don’t go there, I tell myself. Don’t make everything a signifier for something sad, something lost, something about her.

While my feet are soaking in warm soapy water and my hands are drinking in the mystery treatment provided by her special magical coated plastic gloves, Raquel turns to Short-pants and Buddy-roo and says, “Who’s first?” They won’t let me near them with a nail-clipper or emery board in my hand, but they race to her. She is the Pedicure-Whisperer, the intuitive tender of nails, calming any child, even my two wild fillies, enough to cut and clean their fingers and toes. Buddy-roo chooses a dainty, unsurprising, princess pink; it’s Short-pants who startles me by pointing to a dark, vampy burgundy, close to my own preferred color. Raquel glances up at me, her eyes seeking permission. Why not? I shrug. She’s not the daughter I worry about taking this color to heart.

Later, as the varnish on my toes is drying, the girls arrive with their dolls, asking if they can paint their toenails, too. My first instinct is no. They’ll make a mess. They’ll ruin the dolls. “Sure,” I say, remembering that nail polish remover has already been invented. “But get our polish from the basket in our bathroom.”

There is jumping and cheering and running back and forth and setting up the dolls in small child-sized chairs. Raquel offers a few tips to the girls as their shaky hands struggle to paint the polish on the tiniest of doll nails. They do a surprisingly accurate job, and parade proudly around the living room displaying the polished extremities of their dolled-up dolls.

“Careful,” I warn them, “Keep them away from the couch.” (I can’t help myself.)

“We know, mama,” Short-pants says, “don’t worry.”

They march and laugh and celebrate (with aplomb) a splash of color on tiny toenails. They sing a song about nail polish, one they’ve made up on the spot. For the first time in a long time, things seem almost normal. This, I suppose, is how life goes on.

We climbed the four flights of stairs to the olive green door of our apartment. Short-pants was ahead of me. She stopped at the landing, just before the door, and turned toward me. “Grammy’s happy now,” she said, “It’s just the rest of us who are sad, the ones left behind.” The edge of her mouth spread into a wide-open smile, her oversized chalky teeth in full view. She beamed awkward and proud at once, fully aware that she could console me with her wisdom. Where does she come up with these things? As if she could read my mind, she went on, “I read that in my Molly McIntire book, but it makes sense.”

Funny what our mourning minds construct to soften the blow of our loss. She’s happy now, we say. Is she? Happy lying in a polished box under the frozen soil? My mother, a card-carrying member of Republicans for Choice, now buried a mere stone’s throw away from a newly placed memorial that I’d never seen before, a marker engraved with prayers for the lives of unborn children “in hopes that our nation will stop the abortion that kills them.” Is she happy about that?

She’s with Daddy now. Is she? Although my last post was engineered around this idea, I have no evidence to prove it. He’s been dead for 23 years. Did he wait for her in some celestial green room with a monitor, watching the rest of her life before she came to join him? What if he reincarnated? What if right now he’s some pimply teenager fumbling his way to second base in his parents’ suburban basement?

I suppose this is would be the anger that Elisabeth Kübler-Ross referred to in her five stages of grief. Anger being the stage that follows denial, which is what I guess I was doing for the last year because my mother didn’t look or act like somebody with a terminal illness. My anger rises from the dust and residue of all the clichéd things we say about a good death, and how she didn’t suffer and how her family was with her, and she died on her own terms.

They weren’t my terms.

I wanted to be able to ask her advice about how to manage my girls when they are rotten and unruly teenagers. She had some experience in this domain, having survived my adolescence. I wanted my mother to watch my daughters grow into young women, to see them graduate from college. I wanted her to be around. I wasn’t done yet.

I keep wondering what do I have to do to wake up and be in a different reality where she’s still with us. Is that bargaining? Check the box for the Kübler-Ross’s third stage, too.

Right away, Buddy-roo noticed the ring on my right-hand ring-finger, a narrow gold band with two rectangular blue amethysts set with two miniature diamonds. I told her how my mother bought the ring from a jeweler in the Russian market in Phnom Penh. My sister was living in Southeast Asia at the time – hard to believe it was 10 years ago – and organized for us a Christmas trip to Thailand, Cambodia and Vietnam. It was a trip filled with indelible images: two sisters sunbathing on an island beach on Koh Samui; my mother, tired and proud after climbing the steep and treacherous stairs to the very top tower of the Temple of Angkor Wat; we three lined up in a row, each in our own single-seated cyclo, complete with toothless drivers and the backdrop of Hanoi’s chaotic traffic.

The jeweler – his name was Sarat, my sister’s most favored vendor in the market – was charmed by my mother, like everyone we introduced her to.
He spent nearly an hour showing her all the rings he’d designed, telling her about his gems and precious stones and where he found them in Cambodia. I remember how, after my mother went to bed, my sister and I would sit at the hotel bar and shake our heads. Everyone was always so enamored with mom. If they only knew what we knew, we’d mutter to each other, knowing that what we knew was a daughter’s privilege, and that despite all her motherly flaws, we, too, admired her fiercely.

Buddy-roo wanted to try on the ring. I twisted it off my finger and handed it over. She held the band, turning it back and forth to make the stones sparkle under the light. It was too large for her ring finger, even too big as she pulled it down over her thumb. “Can I have it someday?” she asked. “Sure,” I told her, “someday you can have it all.”

I’m haunted by that someday, that future moment when I will leave Short-pants and Buddy-roo to their grief, when they will rifle through my earliest love letters to
De-facto, making fun of my copiously worded and disclaimer-ridden proclamations of affection, or when they read the letters in that shoe-box that I should probably destroy now while I can, the syrupy ones I wrote to my parents when I was an introspective, awe-struck student seeing Europe for the first time. Or when they go to write my obituary and realize that I used to be somebody, somebody who was a competent professional before becoming their quirky, forgetful, imperfect mother.

As I begin to sort through the relics that belonged to my mother, I see her anew. I study her photographs a different way. A college friend of hers writes a note about some mischief they stirred up on campus; I am surprised to think of my mother involved in such antics. Now comes a new view, I suppose, to see her as someone beyond my mother, to frame her in larger context, as a woman coming of age and living a range of life experiences. A regular person – just like me.

It makes me look at the girls and think this: by the time you can possibly understand who I really am, it will probably be too late to know me. Then you, too, will know this hollow, cheated, bereaved anger.

This isn’t a pretty post. It’s agitated and discomforting. It doesn’t resolve and tie up in a pithy bow at the end. You were a bit too whiney in that one, someone will say, after reading it. Why, I wonder, when a woman speaks the truth about anger or frustration, this is called whining. Were I man, I’d be allowed to punch holes in the plaster wall. Which is what my words are meant to do right now, because I have been on an airplane all night and I am tired and honest and angry that my mother has been taken from us.

Everything else I’ve written about her death has been well-behaved. Why can’t the poignant be joined by the raw and unrefined? I want to write it as it is: real, rough, full-bodied grief, something that’s messy, mad and just a little bit selfish, something that will be diluted if there are too many drafts and edits, something that’s ugly and maybe hard to read. Something that screams at me to just press publish.

I have always been the documenter of our family’s history. As a child I would stack together multiple pages of paper, folding and cutting them to create pocket-sized books. I’d write about our family rituals or offer how-to advice. These books were a source of great entertainment to my family and good fodder for teasing me, still, to this day.

My most famous title, The U.D.T. Rool Book, a palm-sized field guide I wrote when I was 7-years old, described, step-by-step, our family’s summertime swim-in-the-lake ritual, as practiced by the Underwater Demolition Team (U.D.T.), a club invented by my father to get us out of bed and in the lake every July morning. Another family favorite: the handy pamphlet titled
The Key to Popularity, my very first (circa 4th grade) effort at parody, a tongue-in-cheek embellishment of my mother’s theory that if she just made sure we all learned how to ice-skate and water-ski, we’d be popular.

As happens with the artifacts of our childhood, these little books disappeared. And then, during renovations or severe spring cleanings, they re-appeared. When my mother recovered The Key to Popularity, probably in the back of some drawer, she put it in its rightful place on the kitchen counter, in that the space that is a magnet for all manner of junk – those old, chewed-on, unsharpened pencils, pens that no longer work, worn nail files, remnants of note pads, tchotchkes and campaign buttons – the miscellaneous counter in our kitchen (we all have one, don’t we?) where things just end up and somehow, stay there.

Every time I went to visit my mother, The Key to Popularity was still there, wedged in a square lucite box meant for Post-it notes that were used up over a decade ago. This little book, like many of the masterpieces I authored as a child, was a charming chapter of our family jokelore; she couldn’t bring herself to throw it out. But I cringed every time I saw it.

When my father died, at the age of 59, we assembled in shock, unprepared and unbelieving. Things we’d meant to say had gone unspoken. Nothing so dramatic that he didn’t probably know already, but still, it felt as though he was plucked away from us; his life was interrupted. The painter who made a portrait of him, later, purposefully didn’t finish the canvas, in homage to his unfinished life.

On the day we buried him, prior to the mass, there was a small private service at the funeral home, the last viewing of his body before the casket was closed. We stood around him, shedding tears – and giggling. “What are you all chuckling about?” my mother asked, mildly perturbed as she approached us at the casket. She saw the little trinkets and photographs we’d placed beside him and she smiled. When I showed her The U.D.T. Rool Book tucked in the breast pocket of his blazer, she took my hand and squeezed it. She even chuckled with us when she saw what had been slipped under my father’s lifeless arm: the previous Sunday’s New York Times crossword puzzle and a sharpened #2 pencil. “You kids,” she said.

How many times I heard her say that: You kids.

But the truth must come out: It was my mother who started the tradition of doing the Sunday Times crossword when my parents were dating in college. She was, by her own report, quite skilled at crosswords – more adept than my father. But she figured out quickly that if she didn’t answer all the clues she knew right away, it would take longer to finish the puzzle, elongating their afternoon date. This was a surprise to me; I’d always associated my Dad with the Sunday crossword. I asked her about this and she shrugged. “He got so good at working the puzzle, I let him take it over.”

My mother told us, knowing it was futile, not to put anything in her coffin with her. I teased her that I would bury her with the family carrot, but in the end I had a better idea. I tucked The Key To Popularity in beside her, next to the white satin interior of her casket, just a little helpful guidance for heavenly social interaction.

There was something else lying around on that kitchen counter: a hand-made oragami oracle that Short-pants gave to my mother last year, to “help her with important decisions.” Constructed out of intricately folded paper, this device resembles an egg carton in which you insert your thumb and index finger and move the triangled peaks this way and that way. With a ritualized guess of numbers and colors, the correct answer to all-important questions can be divined, much like the famous 8-ball, with oracle-like responses under the folded flaps: Yes, of course or Maybe not.

Though I was not present during the days that my mother made her decision to stop treatment and enter hospice care, I have this fantasy that she stood, leaning against her kitchen island, moving her fingers back and forth within the folded paper, asking the question, “Is it time to go?” and that Short-pants’ oracle gave her the response that settled it once and for all.

This folded contraption was also placed in the casket with my mother, in case she needs to make any decisions in the afterlife.

My mother’s mother, my Grammy, used to tell us that she and Grandpa had a plan to meet up after death at the entrance to Macy’s on 34th street in New York. When she died, I imagined some purgatorial dimension where their fantasy was lived out, returning to the roaring twenties that belonged to them when they were roaring, in their twenties, and finding each other again.

So I imagine my mother, holding her edition of The Key to Popularity, meeting up with my father, with the original U.D.T. Rool Book in hand, comparing notes about the memories of their happy life together. “Sure glad she wrote it all down,” they’ll say, marveling at my little handbooks, “so we’ll never forget.”

And then Daddy will pull out his copy of the New York Times Sunday crossword puzzle, and they’ll work it together, for eternity.

There are times when life seems to take on its own momentum. Unlike the days where choice seems evident – debating the banal options of our routine lives, turn here or there, eat this or that – these are the eerily directed moments when events simply propel us forward and it feels that we have little say in any matter. My mother died and time hiccupped; seeming to pause momentarily as we stared at her still body, relieved for her, bereft for ourselves. Who do we call first? Let’s just wait a bit, take this in. We knew. It was a temporary stay of time, a last quiet moment before the rapid undertaking of after-death duties.

Once the call was made, however, a trigger was pulled and industrious activity ensued. The hospice nurse arrived and made an official pronouncement. The funeral director came, his head perpetually bowed. My mother wanted to donate the bones in her inner ears to science; this had to be orchestrated quickly, and on a weekend. Our immediate family was notified. Close friends were called. The obituary, previously drafted, required editing and (exhaustive) proofing. The laundering of sheets, the removal of the hospice furniture and putting my mother’s study back together. The calling of lawyers, reading of the will, signing of waivers, funeral arrangements, plane reservations for relatives flying in or not, depending on the inclement weather. The unfolding course of events urged us, relentlessly, onward.

Our mother was a woman who took much satisfaction from her own productivity. Even at the very end, she wanted a plan for the day. We are fallen apples, not far from that tree; our daily to-do list became suddenly daunting. The slow, quiet, waiting vigil of the aching days before her death gave way to a frenzy of tasks that were executed with an almost maniacal urgency while dodging the onslaught of casseroles and meat platters.

Looking in the mirror one tired morning, dark circles defining my eyes – the residue of a long vigil and stolen moments for private tears – I wondered exactly what fumes in my body were driving me forward.

Two weeks before my mother died, her sister sent her an email about a game they made up when they were kids, maybe 6 or 7 years old. They’d march around the back yard with sticks and curtain rods that they pretended were rifles and they’d shout out, “Advance to the rear!” My mother remembered the game; she instructed me to pull out her old photo album and she pointed to the picture of the house – the same house I saw in Havana – and showed me the route they followed, rifles in hand, out the side door and around to the back of the house. She said her father would get so frustrated with them; repeatedly explaining that it was not possible to advance to the rear.

But we were advancing, one step at a time, a last loving labor to finish what my mother had started by dying. Respects were paid; the ritualized calling hours sometimes awkward, often healing – the standing and greeting of her friends and admirers, the sharing of our grief. People came to console us but just as often we ended up consoling them. “Don’t be sorry she’s gone,” I told someone who would not stop crying, “just be grateful you knew her.” (But my sorrow remains, along with my gratitude.)

We put her in the ground beside my father, resting next to him the same way they used to sleep, side-by-side in their bed. We did this privately, without fanfare. Her friends and colleagues will be invited to a memorial service later, in the spring, when we will celebrate her life.

In retrospect, it was right to have this last private moment with her – with them. We stood there like kids stalling at the foot of our parents’ bed, saying an eternal goodnight.

We pressed ahead to finish the business of collecting important files and papers, cleaning out the refrigerator, coordinating with the caretaker who will stay with the house. We stood in the driveway to make our goodbyes, stunned by the list of sad errands we had completed in just one week’s time. I studied my sister and brother in the harsh winter sunlight. They looked tired, worn out – a reflection, no doubt, of how I looked and felt. Oh my god, I thought, she’s really gone. Oh my god, I thought, we’re old.

I’d phoned the airline nearly every day, searching for a return flight. With each call, I felt more like Dorothy asking anyone and everyone I came in contact with to please help me get home. I just wanted to get back home.
No amount of logic or emotion would solicit enough sympathy from a reservation agent to bend any rules. In the end, I broke down and bought a new airline ticket to take me home to Short-pants and Buddy-roo and the heroic De-facto, Nobel-worthy after his 3-week stint as a single parent.
I would not have been able to accompany my mother this way had he not been so willing and agile.

Now I am home, back in the fold of my life. Back to my cherubs crawling in bed for the morning cuddle, the rush through breakfast and out the door to school. Back to my work and my clients and conference calls. Back to the bustle of a cosmopolitan city and the every-day routine of my regular world. Back to normal, except nothing feels normal anymore.

It was a campaign, these last weeks, to help my mother die, wanting her to die well, pushing myself forward to do what must be done, all the while missing my man and my little girls. It was a privilege to be there, to hold my mother’s hand and help her move through the last days of her life. It was a relief to come home to the hold-you-forever embrace of my vibrant little girls. And now that I have been there and back, I think I know exactly what it means to advance to the rear.

I pinched the frozen clothespins to liberate the sheet from the line of rope that spans the back porch. The sheet was ice-cold; it’d been hanging outside on the porch all afternoon. I wrapped the yards of damp cotton over my shoulder, trying not to drag anything on the floor as I pulled the rest of the laundry – pillowcases and a few dishtowels – off the line and made my way back inside. I draped the sheet over the three chairs evenly placed beside the dining room table. It will hang there overnight, to shed the last of the dampness and to get warm and fully dry before it is ready to be folded.

This is a ritual that has been enacted in this house, on this porch and in this dining room, for more than fifty years. The tumble-dryer in the laundry room is not unused, but the sheets in this house have never seen the inside of it. No matter what season, my mother’s sheets are always line-dried.

“I need your help with the sheets,” my mother would say, a habitual plea generating the big eye roll from any one of her three children. This might be our Sisyphean task, second only to ironing my father’s handkerchiefs, a pesky chore we were commanded to do and our mother would not tolerate a half-hearted execution. We were guided step by step. “Put your finger in the dart. Pull it, tight. Stretch the sheet first. Flip it and fold. Now walk toward me…”

We found explicit sheet-folding instructions from a mid-twentieth century woman’s magazine, tucked in the back of some drawer. Was this how she learned her special way to fold fitted sheets? Or did she clip it because it matched the technique she’d acquired or invented herself? She would never say. But her systematic laundering and folding of sheets is part of our family lore.

Just picture the linen closet: towels on one shelf, sheets on the other – all squared, fluffed and folded, even towers of perfectly creased cotton. And when you go to make a bed – any bed in the house – the fitted bottom sheet opens itself for the bed, effortlessly, without a single wrinkle.

And the smell, the perfume of all the things that fly in the country air: cut grass, morning dew, apple blossoms in the orchard, summer rain, fecund grapes before the harvest, an icy winter storm. I need only to throw one of those freshly aired sheets over my shoulder or to slip myself into a just-made bed, to re-live my entire childhood with one inhale. Those sheets are an olfactory map of my earliest years.

During the last months of her life, when she was weakening, my mother’s friends admonished her to stop. She should save her energy. It was too easy to fall on the porch, too cold to be out hanging the sheets on the line. She should use the dryer. But my mother persisted. She has always preferred the feel and scent of her line-dried sheets.

This last week, my sister and brother and I washed her sheets every other day, taking turns pulling them from the washer and hanging them outside on the line and bringing them in to warm before folding. We all have the intuition – inherited, no doubt – about when they have been on the line long enough, or when, after hanging inside, they are ready to fold. One of us would call the other into the dining room and in tandem we’d lift the sheet and stand, facing each other, following the steps as though our mother was whispering them to us from the middle of her steady, uninterrupted slumber in the other room.

It is unspoken, but we all know why we’ve done this. This is still her house. We honor her with every load of laundry. Each time the nurse’s assistant came to give a sponge-bath and change the bed, we knew that my mother, even in a semi-conscious state, would be comforted by the familiar perfume of her porch-dried sheets. It was part of our vigil.

Then, this morning, my mother took her last breath.

My brother – her son, the doctor – checked her vital signs. I reached for my iPhone to note the official time of death. My sister wrapped her arms around me as I began to cry. We waited for a long stretch of time, watching to be sure that she would not take another breath, that this wasn’t just some irregularity, that this was the end. When we were certain, we kissed her goodbye, one at a time, and pulled up the sheet to cover her motionless
chest, a sheet that, once they came to take my mother’s body away, was washed and hung on the line to dry. A sheet that, tonight, before bed, we brought in and draped over the backs of the dining room chairs to get warm and fully dry. A sheet that, tomorrow, we will pull and stretch tight, folding it solemnly, like a prayer.

I’ve been sleeping on the loveseat in my mother’s study. You would not think it comfortable, but curled into a fetal position within its square arms and rounded pillows I manage to find restorative sleep. Not that it is uninterrupted sleep, but at least there is plenty of it. I cannot help but compare the rhythm of these nights to those first ones just after bringing my babies home from the hospital. There is something satisfying about the tender caretaking that is administered in the quietest part of the night.

We are spun in the cocoon of Hospice. A cold and white winter waits outside. We are warm and attentive within the walls of this old, noisy house. When my mother sleeps, I hear the sounds of ticking clocks and shutters knocking in the wind. The furnace kicks in and rocks the whole house, just like it always has. I like all these odd, familiar noises, even in the night. They keep me company when my mother is asleep.

A social worker called and asked to come see my mother, who is not that interested in visitors, but we realized this is all part of the Hospice checklist. As it should be; aside from the furniture, the physical care and the advice about administering pain-relief, it is entirely appropriate to assess the dying patient’s need for psychological and emotional support. It’s not like everyone knows how to die.

She arrived with a notepad, an over-compassionate expression and a gift, a hand-knit shawl. She asked all the questions my poor mother has answered already a half-dozen times in the last week as each Hospice staffer has come to meet her and familiarize themselves with her case. And then more questions: Are you ready to die? How do you feel about dying? My mother has done much thinking about this topic, evident from that natural language she used to convey her state of mind. She graciously indulged the long string of questions, though it taxed her to talk for so long. And then finally, she’d had enough.

“You know,” she said, “I remember something Elisabeth Kübler-Ross once told me…” (I wish I could repeat the rest of what my mother said, I’m sure it was wise. But I didn’t hear it because of the extra-loud Ch-Ching that went off in the back of my brain.)

A personal affiliation with the Guru of death and dying obviously trumps an inquisitive social worker. My mother has always known how to gently move things along. Some final small talk, appreciative goodbyes and call if you change your mind about the Chaplain. Yes, of course, and thanks for the shawl.

(Kübler-Ross, it turns out, was a commencement speaker at a college where my mother worked. Mom really did have occasion to speak with her, at length. Who knew?)

After the social worker left, my mother eyed the shawl. “Make sure it ends up in one of the boxes upstairs, for the yard sale.” For years she’s been putting stuff aside for this heralded event. Even in the last days of her life, she is still anticipating the moment when her home will be free of the clutter she’s collected. I told her that in heaven there are effortless yard sales, managed by angels, where everything sells.

“Come with me,” she said, a command that once upon a time would elicit a groan. She led me into the room that is part-laundry room, part-office. I watched her open the bottom drawer of her filing cabinet. She pulled out two ledgers.

“This one has all my medical expenses.” She opened the pages to show me the rows of entries, evenly notated in handwriting I recognized from grocery lists and birthday cards and notes she wrote to school excusing my absence. That’s something you never forget: the protective lines and loops of your mother’s handwriting.

She pointed to the pages in the front. “These are things I paid for, every day things like prescriptions and lab tests.” She flipped to the pages at the back of the notebook. “These are the big medical costs – covered by insurance.” Her familiar index finger tracked down the first column, running over all the words. Oncologist. Chemotherapy. Blood transfusion. Everything detailed. Everything organized.

She opened up the second ledger. Like the first, its columns were neatly labeled and ordered; each page separated by a pile of loose receipts retained for her records. “This book has all my expenses for the year, for my taxes.”

That’s my mother, always organized, preparing to die the same pragmatic and efficient way she’s always lived.

She desperately needed help going through the upstairs backroom, she said, so we obliged, her three grown children following her up the stairs with an eagerness un-witnessed during our childhood. Backroom, in our family, is a euphemism for junk room. The downstairs backroom is a history project, filled with our parents’ past; their love letters, college papers, every issue of Good Housekeeping magazine, neatly boxed, saved since 1958 or thereabouts.
The upstairs backroom, once my brother’s room (with football-patterned wall paper) and then mine (painted white but with bright yellow and neon green shag carpet), now a third guest bedroom rarely used not only because it is the less grand of all the bedrooms, but because the bed was completely covered with bags and baubles brought home from meetings and conventions, or those awkward gifts received from well-meaning friends with taste so strikingly different that their generosity, though appreciated, is never fully utilized. At the foot of the bed, a row of boxes of belongings earmarked for a future yard sale. All the framed awards she received during her admirable career – too numerous to fit on the walls – piled on the shelves and on the floor, stacked against the wall. In the dresser drawers, things too precious to part with, ivory kid gloves from a governor’s ball, a silk purse her mother bought in Hong Kong, old black and white photographs, our baby teeth hidden in tiny envelopes, dated in my father’s handwriting.

It’s always the hardest room to clean, the one packed with things of only sentimental value.

The doctors never thought she’d live this long. Last winter, when the diagnosis of pre-leukemic myelodysplasia first pounded its gavel, they ordered a palliative treatment, a mild chemo easily administered five consecutive days in a monthly cycle, a treatment as inconvenient as having your period. In addition, frequent blood transfusions to introduce new cells to replace her tired, incompetent ones. Lots of doctor’s visits and the requisite poking and probing, but all of it relatively close to home and all of her loyal friends have rallied to help, taking turns driving her to all her appointments, checking in on her between medical visits. Though she is still more than capable to drive herself, good company is never a bad idea.

She has a quality of life that is absolutely acceptable. Of course she has slowed her crazy itinerary of activities and travel. But she still does a lot: a dizzying dance-card of lunches and dinner dates with friends, an occasional board meeting, her own shopping and errands. She lives more wisely now, doing only what she wants and using her lack of white blood cells as a good excuse to cut out anything extraneous. After each monthly transfusion, she gets a boost of energy and feels good. But her marrow won’t manufacture the good blood cells she needs, so she’s vulnerable to infection. She avoids crowds and coughing strangers. She won’t die of leukemia; she’ll die because of what the leukemia won’t let her fight.

There is, in fact, a growth in her lung. Is it a tumor? An infection? A fungal growth? The doctors aren’t sure. But the risk of an invasive procedure to determine its nature is deemed too dangerous. Even if they knew what it was, they wouldn’t treat it. A surgery brings too much risk for infection. A stronger chemotherapy also exists, but the doctor opts not to administer it because it requires a portacath, which can too easily become infected. The thought of such medical paraphernalia gives me flashbacks to when Short-pants was in the hospital and her stay was lengthened because the permanent drip became infected, leading to a sepsis that set her recovery back at least a month – and who knows how close she came to not recovering as a result of that secondary infection, an infection my mother would not be able to overcome.

But she looks so beautiful, my mother. I couldn’t take my eyes off her. She smiles. She laughs. She doesn’t look or act sick. She is living in a state of grace, I think.

Her doctor’s priority is not to cure her – since that is impossible – but to slow the disease so that she might have a quality of life while preparing for its end. For over a month now she’s been off the chemo treatment, and she’s no worse when she was on it. The doctors are baffled to see her doing so well. My mother’s constitution, in the end, is remarkable.

I asked her if she was scared. “No,” she said, “Dying is a part of life. Nobody can live forever.” This is indisputable; it can happen to any of us, any day – a fluke car crash or the diagnosis we dread – just like that. But once the sentence is offered, the disease is certain and incurable, I can only imagine what it’s like to stand on the threshold of the uncertain mystery ahead.

She shakes her head, not with resignation but with gratitude, and lists her fond memories: a happy childhood, enjoying college, all the good years with my father before he died. My siblings and I have managed not to disappoint her. She had a serious career when many women couldn’t, and even in retirement, continues to make an impact in her field. She’s traveled all over the globe. She adores her grandchildren, and this is reciprocated.

There’s no place on her ledger for remorse. She’s just counting up all the good things, year-by-year. Except that now she notices them day-to-day. You can’t imagine how much I am in awe of her, my mother, still modeling for me how to live – right up to the end.

I enjoy a luxury that many of my peers do not: my mother lives in the same house that I inhabited for the first 18 years of my life. Her home is our family’s homestead; going there is not only a visit to see her, it’s also a return to my own history.

It helps that my mother has been in no rush to throw away the artifacts of my childhood. The toys that I played with as a little girl are still here, stowed in boxes in a dusty backroom, pulled out whenever a visiting friend brings a grandchild along, or when her own come to stay. The subject folders from all of my high school classes, with homework in the left pocket, tests in the right and notes in the hole-punched center section, are stacked in chronological order on the top shelf of the closet of the room that was once my bedroom. The room has been renovated to receive overnight guests, with the exception of the interior of the closet, which looks as it did when I left it so many years ago, like a hidden shrine to my youth.

I asked my mother to walk through the rooms of her house and tell me their stories. In each room, she’d settle herself in a comfortable chair and then she’d look up, as if she was looking into the recesses of her memory to find an anecdote. Something about the makeshift dining table my father constructed when they first moved in. Or how the long bedroom upstairs was filled with glass cases, like a museum, when the previous owners lived here. Or about how she won the dispute with my father during a renovation, about making a unused door into an elegant window. In the living room she recalled setting up extra tables and making seating arrangements for dinner parties and the laughter that these events produced. Upstairs she remembered when and where they bought the bedroom furniture, and named her uncles and aunts in all the miniature black and white photographs hanging together on the wall.

This morning I lay in bed, staring out the window as the sun stretched its arms across the fields beside our house. Thirty years ago, on any June morning, I might have lay in just the same way, looking out at the leaves on the branches outside the window, motionless in the fresh new day. The sounds of morning in this room are as they always have been; the chirping birds, an occasional car racing down the road in front of our house, a water pump clicking on and then off down in the basement, muted but audible on the second floor of this old Victorian farmhouse.

I tiptoed across the hall and peeked in at my mother, soundly asleep on what has always been her side of the bed, even though she’s slept alone in it for the last twenty years. I slipped under the covers beside her, just like Short-pants or Buddy-roo cuddle up to me on any given morning. I remembered how once, years ago, when I was about 10-years old, I’d curled up on the couch with my mother and she said to me, “Are you ever going to be too big to cuddle with me?” And I told her, “Never.”