Maternal Dementia

We pulled in the driveway. Rather, the driveway pulled us in, the way we have been pulled into the embrace of this old house for half a century. Driving toward it on the country road, there comes a point where the cupola is visible and then the wedding-cake layers of the house below are revealed, and a whole world of familiarity and fond memories beckon. The car slows and dips into the long curved driveway. Do we stop halfway, where dad always used to park? Or pull in all the way to the garage, at the foot of the back stairs, to mom’s place? They are both gone, but their parking spaces – and other routines of living in the house – remain our habits, too.

All the many times I have pulled into this driveway: Like a bat out of hell when that quick errand for my mother lasted three times as long as it should have. Or stealthily with the engine and lights off when I was coming home too late after my curfew. Triumphantly, returning after a first semester at college. Somberly, after the long, sad, drive with the news that my father had died. Or gingerly, the way we pulled in the driveway this time, my sister and I, honoring that this might be the last time we come home to this house.

“It looks small,” I said. She agreed. I’d not been to the house for a year and all these months that I’ve been bracing myself for its sale, I’ve been mentally walking through its rooms and committing to memory any and all things that happened in each corner and corridor. So many of these little anecdotal visual memories hail from the time in my life when I was small, giving the house much larger proportions in my memory.

We stood outside and looked up the stairs, my sister, no doubt, remembering the same thing I was: how Mama would come out the porch when she saw (or possibly heard) the car pull in the driveway, she’d push open the screen door and watch you walk up the stairs, her full anticipation of the visit entirely given away by the broad, boundless smile.

“You’re here,” she’d say.

Inside we walked through the house, wordless, side-by-side surveying each room. Last year we emptied it of her personal clutter, but the furniture, paintings, objects d’art and a few books remained, left in place so the house would show well. It was a bit like walking around a museum of our past – and we are the docents – taking a last tour to store our knowledge away before it closes. Soon the house will be emptied of the last of our family’s artifacts and filled with the belongings of another’s. As it should be; it’s a house that needs a family running around in it. It’s a house that has ample room for laughter and love and its walls have already been conditioned for both. It’s a house that we are obliged to say goodbye to; the most valuable thing inside it is already gone. Without her standing on the porch waiting to welcome us, it is a different house. Little by little, it ceases to be ours.

~ ~ ~

I don’t want her to be gone. I want her to be upstairs in that big bed, sleeping. I want to hear her slow steps down the stairs and the footfall of her path in the dining room and across the creaky floor in the kitchen. I want her to peek into this study and say hi sweety. I want her to offer to make breakfast and I want to taste her scrambled eggs and perfectly browned and buttered toast. I know which fork she would use to scramble those eggs, and I want to see it left on the counter as we carry the plates into the dining room and sit with the sun streaming in the window from the back porch, that window that used to be a door and then she could tell me the story I loved to hear, about how she and Daddy argued over whether to leave it a door or make it a window and in the end he’d told her – and he meant it – that she’d been right.

~ ~ ~

I’m finding myself pulled apart, teary at every turn, probably too sentimental for my own good. But how do you say goodbye to a house that was the one you came home to from the hospital after you were born, and then came home to from school every day, from college, from every other place I lived as an adult, where I surely felt at home, still, this house was still the original “home” to me. It’s not so much the things that are here – although the decisions about their distribution and disposal are fatiguing – it’s the end of that feeling of safety of what it meant to be here, even as a grown woman. So I am grieving again my mother’s departure, but also my father’s, and I suppose also the end of my childhood, and the swells of emotion that are part of this grief are giant waves to ride. After each crest, I wipe those tears away, pull yourself together I say under my breath and clear my throat and try to take comfort in the fact that these memories are all good ones and I get to keep them forever. But saying goodbye to the touchstone of those memories, that’s what’s in front of me now, and it’s daunting.

At least I am here with my siblings. In the mornings, we sit on the steps of the back porch, sipping coffee, looking out over the orchard beside our property, telling stories, making a plan for what’s to happen during the day. We have done this for years, when we lived here and when we visited; this porch is the place where you perch to slowly shake off the cobwebs of a heavy sleep and to ramp gently into the tasks of the day. Later, at wine-o’clock (or scotch-thirty) we gather around the kitchen counter, and despite the sadness that brings us together, we find a way to laugh and march forward, united as the orphans we’ve become, good friends always – but perhaps appreciating each other more than ever through this process. If my mother could see us, if my parents could see us, they’d be delighted. Perhaps the memory of your parents is best honored by acts of kindness toward your siblings.

Last night our cocktail hour held on the porch – though the wicker furniture is no longer set up so we were obliged to sit on the floor – we gathered around a box containing the last items that needed to be distributed among the three of us. One by one, my brother pulled out the small bundles of tissue paper, some of the paper so fragile, having been folded and wrapped so many times that it was softened like cotton. Inside each little package a Christmas ornament, some of them clever and charming, the little hand-knit mitten or a santa made of empty thread-spools. Others kitsch and retro: faded, striped balls with bent wire hangers, not necessarily that pretty but steeped in sentimental beauty. The obligatory ones, hand-made by us when our hands were little, faded and worn, but kept for decades and treated as treasures. One by one we admired each ornament, remembered where and how they used to hang on the tree and which ones were her, and our, favorites.

We have driven so many decisions this last year: who gets those chairs, who wants that painting, who’s taking the china, the silver, the demitasse collection. All of this achieved without a battle. This box was no different, though its contents evoked sighs and giggles and tears as each ornament was examined and claimed, each negotiation handled generously until all the little bundles were distributed. The separation of these sentimental items that lived for so many years in the same worn-out cardboard box just as poignant as the dismantling of this entire house: pulled apart piece by piece to be put in a new place, but in our memories they will stay here in this house, all together, the backdrop of a thousand stories we have the rest of our lives to remember.

“But why did we need to redo our bathroom?” said Buddy-roo. She waved her hand like a game-show host’s assistant, pointing out all the clutter in our living room. Boxes of tiles, equipment yet to be installed – sinks, toilets, mirrors, a new towel heater – all sprawled across the floor. Our hallway is covered with dust from two different kinds of saws, each one set up on wide, sturdy sawhorses in the middle of our entry foyer. Pieces of particleboard, soon to be cupboards, are stacked against the wall making it nearly impassable.

I ran through the litany of complaints about our old bathrooms: the aging toilets, lack of counter space, lack of shelf space and inefficient storage – let alone the aesthetic problem of a sickening color of green tile not quite olive but not quite forest, the kind of green that neither soothes nor pleases the eye. Constructed in the early 1970s – and I doubt there was any renovation bestowed upon them before I started living here in the mid-90s – those bathrooms are owed a re-look.

There isn’t a renovation project that’s easy to live through, but perhaps kitchens and bathrooms – the two most plumbing intensive rooms in a home – are the most difficult to endure, which is why we scheduled the work to be done in July while we were out of town. But an appointment in Paris required our presence and we also felt the need for a few consecutive days of full-time internet connection to keep up with our on-line lives, so we trekked back to the city for a mid-summer’s pause in our what is usually a nearly-full-summer vacation.

Not that it hurt to be home to peek at the work in progress and surely there were a few decisions better made after seeing things first hand. There is the clear promise of a 4-star hotel bathroom in the making, but still much work ahead before anyone can luxuriate in that bathtub.

Maybe one of you readers could kindly enlighten me as to why De-facto would distract our contractor by asking for his attention on another project, at a little studio we rent out, in the middle of our double bathroom renovation? That “little” job turned out to be much more complicated than the few days originally forecast. Since our contractor is meticulous – and for this I hired him – that small-job-gone-awry put him at least a week behind on our bathrooms. You might imagine that his keen attention to detail might anyway contribute to what was already his propensity to run behind schedule. De-facto’s quick little job-on-the-side didn’t help.

Luckily our next-door neighbors were gone last week, so we borrowed their bathroom. But after 6 days of sawing and pounding and tile-dust, and knowing that there’s at least another week (or more) of it ahead, we’d had enough of cohabiting with the renovation. Our summer-in-the-city days were numbered. It’d be much easier to get out of town, though we picked one of the most heavily trafficked weekends in France to be on the road again.

Buddy-roo motioned for me to follow her into the bathroom. The contractor had been building customized shelves, fitting them around an old beam that cuts diagonally from the ceiling to the floor along one of the walls.

“Look at all the shelves,” she said.

“Yes,” I marveled with her. The shelves glistened like jewels, each cubbyhole waiting to harbor my creams and powders.

“Do I get a shelf of my own?”

I had considered, in the design, that the girls might grow into teenagers in this bathroom, requiring a designated place to store their own toiletries. I nodded my head.

“Which one?” she asked, with the same enthusiasm she exhibits on Christmas morning.

“We have to see, when it’s all done, what makes sense.”

“What about Papa?” she asked, “Does he get a shelf?”

I eyed the cardboard, plastic pieces and old plaster piled in the bathtub, the electrical wires jutting out of the wall, the open pipes waiting for fixtures to be attached.

“Over there,” I pointed to the small triangular shelf in the corner, at the furthest point from where the sink will be, just behind the door.

“That little one?” she said.

I nodded. I waved my hand around the room, like Vanna White, showcasing all the work that was taking longer than expected.

“Yes,” she said, conspiratorially, “That’ll be just right.”

“I can’t figure out why you were at Fifth Avenue,” my mother said. This would explain her rather lukewarm response to my post about finding her childhood home. “Your aunt didn’t think that was the house, either. We lived two houses in from Third Avenue.”

What?

Hmm. I’m pretty sure I read her email correctly. I remember going back to it again and again and again to check, before plotting out on the map where to go to trace her housing history. And what about that woman I met, at the
brownish house? She’d recognized the names of my mother and her sisters and pointed to a house, down the road. Was she just being polite? Had she really known the maid who’d told her stories about a family with three daughters who lived down the street – only it wasn’t two doors away, but one full block down the street?

There I was penning flowery connecting-with-my-mother’s-roots posts about my trip like as though I was writing for some (ahem) Condé Nast travel blog, all the while standing in front of the wrong damn house. Let us just remember, for the record, what this blog is about. This is exactly what happens when the act of having children has extracted all your brain capacity. Before giving birth I used to be mentally sharp, but now my mind is sieve-like and feeble. And oh my, isn’t this a quintessential example?

Just as quickly as I realized that I might have misread the address, my mother acknowledged that she’s gotten a few details wrong in the last months so maybe it was her error. In the end, we agreed not to dig into our email archives to check the message. There’s nothing to win for being right.

It’s not like it’s a catastrophe. I was close enough, crossing back and forth over Third Avenue when I wandered the streets of her old neighborhood. I probably walked right by the house. I went to a restaurant just a few streets away, twice. If I ever go back, um, at least I’ll know where to go.

This morning over coffee, my mother and I looked at photographs. Clicking through my digital albums on iPhoto, I told her the story, day-by-day, of my trip to Havana. She fetched her vintage photo albums from the back of the cupboard in the living room. Square black and white photos with borders,
mounted on pages of heavy black paper, told a long-ago story of her early years in Cuba. A picture of her friends sitting on the railing of the balcony of her old school matched a shot I’d taken of it when I was there. Her graduating class, a chaperon seated behind each girl, posed on a set of stairs where I, too, stood for a picture in the interior of the schoolyard.

“That’s on First Avenue, by the ocean,” she said, tapping her finger on a picture of a three story building, “the house that’s no longer there.”

Except it was there. I’d seen it.

She’d been so certain that this house had been torn down; when she was in Havana eight years ago, the driver of her tour bus had (allegedly) taken her to it only to show her an empty lot. She assumed that any house on this corner would be a new one – and so did I.

I rushed to open my computer, and called up several photographs. We put the before and after shots side-by-side, comparing them, window by window, detail by detail – everything matched:

The current version is slightly altered by an addition on the back, and it has a more elaborate wall around the outside of the property than it used to. But it’s undeniably the same house.

So in the end, the house that I thought I saw, I didn’t see. The house that I thought I couldn’t see, I did see. Between the two of us, my mother and I read it wrong, wrote it wrong, or remembered it wrong. But somehow, the two wrongs make a right. I’m thrilled to have seen this house first-hand. Now I have a picture – in my mind as well as my camera – of at least one of her childhood homes.

“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.