Maternal Dementia

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’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.

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on one hand the times I’ve seen my mother cry. She sat across from me, wet-eyed, pained to see what we were enduring each day. “Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.

Yesterday morning, Short-pants was early out of bed – a rarity – and crawled in with De-facto and me for a ritual cuddle. Buddy-roo came down a bit later and heard us whispering. She lurked in the hall outside our door, sniffling.

I took the bait and asked her what was wrong. She said she’d wanted to be the first in our bed for the morning cuddle. No urging could get her to let go of her disappointment and join us under the warm covers. She alternated between crying and pouting.

For a few moments she disappeared, and returned to deliver a picture she had drawn, indicating her love for me and her papa and sister had been withdrawn. She dropped it on the bed and returned to her post outside our door.

“I don’t care if she doesn’t love me,” said Short-pants, “all that matters is how much I love her.”

I’m not making it up; she really said that. As if we needed any more evidence that she possesses that little extra dose of love, strength and wisdom, and understands how to employ it.

After a long period of silence, Buddy-roo offered a suggestion.

“Mama, you know that store over near the Pompidou, with all the toys stacked in the window?”

“Yes?”

“You could go there and buy me something.”

“That’s one idea,” I said, in my best non-committal voice.

So this is Christmas, I thought, from one end of the range to the other.

In the spirit of both of my beautiful children, I’d like to wish all the readers of this blog – loyal and occasional – a Merry, Merry Christmas, Joyeux Noël, Feliz Navidad, and don’t forget a belated Happy Chanukah. I send warm greetings to you for the whole season; may you find all the love, strength and wisdom – and toys – you need.

And thank you for reading Maternal Dementia this year, that’s the best gift I could ask for.

When I was her age, I don’t think I believed in my own opinion anywhere
near as much as she owns hers. At six – not even, she’s still a few weeks shy – she has an abundance of self-esteem. She stands, solidly planted, unquestioning in her dominance. At the park she reigns. She barks out orders and her friends comply without complaint. They seem happy to do her bidding. Nobody messes with Buddy-roo.

Yesterday an argument between sisters came to blows and resulted in two girls in tears. Buddy-roo, frustrated at her sister’s unwillingness to follow orders. Short-pants, annoyed at the repeated, relentless, nagging request that would not accept a polite, or even an impolite, no. It was one of those situations where a brief separation was the best solution.

Buddy-roo sulked beside me in one room, refusing to discuss or debrief the angry encounter with her sister. “I’m not talking to anyone,” she said, “even you.” Sometimes when I’m mad, I just need to be mad, so I understood. I read my book while she curled into a ball beside me. She wanted me close, but quiet, which is just as well because I don’t know what I could have said that wouldn’t have just made things worse. I could equally query one about being relentless and the other about being inflexible. Three sides to every story.

I overheard De-facto in the other room telling Short-pants about his grandmother, how when she was 2-years old – or so the story goes – her grandfather, a man with a friendly Irish name but a gruff Irish disposition admonished her for climbing up a bookcase. Much to the surprise of the rest of her assembled family, all of whom trembled before the overbearing man, she glared back at him over her shoulder from the third shelf and retorted, “You don’t own me.”

De-facto always has a good story, and knows exactly when to share it; this one perfectly timed to strengthen Short-pant’s intended resolve against her bossy little sister.

Short-pants returned and stood in the doorway. “You don’t own me,” she pronounced. Buddy-roo regarded her, unimpressed.

A little while later, I heard the two of them playing together upstairs. They fell into their imaginary world of pet-shops, fairies and princesses, as though nothing had ever come between them.

I have a childhood memory – it can’t be exactly true and yet it resides in my visual recall – of playing with a ball of mercury. Maybe it was in a science class? Or else a thermometer had broken and maybe it was my brother showing me but not letting me touch? I can’t remember, except for an image that is engraved in my mind. The wild silver ball slipping around the ring of a porcelain saucer, the force of its motion breaking it apart into dozens of little balls and then easily fitting itself back together in one seamless piece. How immediately it could fracture. How permanent it looked once re-bonded.

Sometimes my experience of mothering two daughters is like looking in one of those three-paneled mirrors in a department store fitting room. I see myself straight ahead in the center. Flanking me, one on each side, I see the girls, turned slightly toward me, surrounding me, reflecting at me their actions and dramas, reminiscent of some part of me. Oh, there I am, part defiant, stubborn and bossy – as a young child I confidently wrote letters to my teachers pointing out their errors, and there are abundant teenage tales about how I head-ached my parents. Oh, there I am, the sensitive, uncertain one, eager to please – I was always compliant about things like homework and helping with the dishes, and I excelled at making polite conversation while serving hors d’œuvres at my parents’ cocktail parties.

Oh, here we all are.

I suppose it’s natural, but it’s downright creepy sometimes, how these two girls produce this reflection of me. I’m not sure if I want to encourage them heartily or apologize profusely. But I need only turn the other direction to observe my own mother, and to see – stunningly – how much of her they must see reflected in me. How much of her – I finally understand, now that I’m mothering – is now so much part of me.

It’s like we’re all part of that ball of mercury, temporarily split apart but within view and shouting distance, so clearly made of the same shiny silver substance, and yet separated from each other – except in those rare, complex, and rather profound moments when we can all see each other for who we really are.

“Then I’m not your child anymore!” Buddy-roo screamed it at me.

This was after I refused her a DVD movie viewing during breakfast. She stuck out that bottom lip and stomped away.

“That might change,” Short-pants said to her.
“No it won’t,” argued Buddy-roo.
“You can’t be sure.”
“Yes I can.”
“Well, that might change, too.”

How does Short-pants know such things? With absolute certainty she answers her little sister’s angry attack (at me) with a response that sounds like it’s being channeled. Who lives inside her? Some kind of Buddha?

I ask her how she finds these wise words. “Did you think of it? Did you hear somebody say that?”

“I just heard it in my head.”

Last week I asked her what she wanted for her birthday. She said she needed a new pencil eraser for school. Okay, I agreed, but what else, what would you like for you, that’s for fun? She had to stop and think about it. “Well, I’d like a new princess dress, and I can share that with my sister.”

She doesn’t get this angelic genetic coding from me.

When Short-pants was in the hospital – years ago, when she was three – the day before her second brain surgery, the neurosurgeon who was to perform the operation granted us a meeting in her office. Short-pants had already been in the Intensive Care Unit for nearly four weeks, after being rushed there in a coma caused by a tumor that turned out to be a brain abscess. The drugs that were supposed to shrink the abscess weren’t working, so the doctors had decided to operate again. The surgeon placed the ominous MRI negatives up on the florescent board and traced the outline of the large circular mass just behind the forehead; it looked like a hurricane on a weather map, gathering strength as it moved in on the coast. Then she described to us how they would simply carve it out and extract it from my daughter’s little head.

“And afterward, what will be left?” I asked.
“Nothing, just an empty space.”
“What will you fill it with?” De-facto asked.

From the look on her face, this baffled the surgeon. Probably not something she’d been asked before. But she managed a good recovery: “What would you have me put in?”

Without missing a beat he told her: “love, strength and wisdom.”

The surgeon softened, and let loose the smile she had tried to conceal. And then, it seems, she did just as he asked.

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.”