Table of Contents
Title Page
Epigraph
Introduction
ONE - PRELUDE
ONE - SEPTEMBER 2009
TWO - NOVEMBER 1982
THREE - AUTUMN 1989
FOUR - MAY 1992
FIVE - APRIL 1999
SIX - THE 1960S, JACKSONVILLE, FLORIDA
SEVEN - AUTUMN 2000
EIGHT - MAY 2002
NINE - SUMMER 2002
TEN - CHRISTMAS 2002
TWO - INTERLUDE
ONE - AUTUMN 2003
TWO - SPRING 2004
THREE - SPRING 2004
FOUR - SUMMER 2004
FIVE - AUGUST 2004
THREE - VARIATIONS ON A THEME
ONE - SUMMER 2009
TWO - OCTOBER 2004
THREE - WINTER 2005
FOUR - AUTUMN 2005
FIVE - SPRING AND SUMMER 2006
SIX - AUTUMN 2006
SEVEN - WINTER 2007
EIGHT - ONE MONTH LATER
NINE - SPRING AND SUMMER 2007
TEN - FALL 2007
FOUR - ANTHEM
ONE - WINTER 2008
TWO - SPRING 2008
THREE - SUMMER 2008
FOUR - LATE SUMMER 2008
FIVE - AUTUMN 2008
FIVE - SONG BEFORE SUNRISE
ONE
TWO
THREE
FOUR
FIVE
SIX
SEVEN
EIGHT
NINE
EPILOGUE
Acknowledgments
Copyright Page
“If you want to understand any woman you must first ask about her mother and then listen carefully. . . . The more a daughter knows the details of her mother’s life—without flinching or whining—the stronger the daughter.”
Anita Diamant
Prologue, The Red Tent
INTRODUCTION
In the summer of 2004, I moved my eighty-six-year-old mother from Edenton, North Carolina, where she was a well-known and much-loved musician, into an assisted-living facility near my house in Charlotte. I had no idea what the next few years of my life would be like, but I guessed they might be difficult. They were more than difficult. They were gut-wrenching, sometimes grieffilled years—and yet also more rewarding and soul-stretching than I could possibly have imagined. Sometimes in the throes of despair, I would write essays about what I was going through when I could find the energy. Then I began to think that sharing my experiences of dealing with an elderly parent might be helpful to others who were just embarking on this adventure—as reading about the experiences of others had been helpful to me.
So I started out to write a book about taking care of my mother. However, I found that I could not write about my elderly mother without writing about my younger mother. I couldn’t write about my sacrifices without writing about hers. And I couldn’t write about being a daughter without writing about being a mother. Then there were all the others who played such important roles in this journey: my brothers, my husband, my daughter, my friends both living and dead, even my dog. Mostly, I realized I couldn’t write about the present without writing about the past.
This is my spiderweb of a story. I have kept the real names of my brothers, my mother, myself, and many of my friends—with their permission. I have changed the names of my husband, his family, and our daughter out of respect for their privacy. I am sure they do not share my perspective on all the events that I describe. This story is my truth. Theirs may be something entirely different. I have also changed the names of the various places where my mother was housed over these years. Some of them were fine. Some were awful. I learned a lot about the way we treat our elderly and our caregivers.
One day while driving in my car, I heard an interview with Terry O’Neill, president of the National Organization for Women, on the NPR show Here and Now. O’Neill said that “the best marker of whether a woman will live in poverty in her old age” is motherhood. I was shocked. “Being a mother is the one factor that correlates strongly with living in poverty in old age,” she said, adding that we don’t have policies in this country that support caregivers. O’Neill noted that caregiving is largely unpaid and largely done by women.
For my mother, Social Security represented her only income in her old age, other than what my brothers and I contributed. That, I discovered, is not uncommon. According to the Social Security Administration, about 90 percent of all elderly women live solely on Social Security. In addition, women live longer than men and their Social Security payments are less. Few elderly women have private pensions. Another scary statistic: by 2030, one in four American women will be over the age of sixty-five. I will be one of those women.
And what does this mean for the women who are doing the caregiving? According to a study by the Commonwealth Fund, 25 percent of women who care for a sick or disabled family member rate their own health as fair or poor, and more than half of women caregivers have one or more chronic health conditions. I can attest that while taking care of my mother, I often neglected my health for lack of time, energy, and money. The study also states, “Nearly one-third of all caregivers (31 percent) report a decrease in their family’s savings because of caregiving responsibilities. Overall, two of five women caregivers devote more than twenty hours per week to caring for a sick or disabled family member.”
Although my mother has always been a very private person, she understood my desire to tell our story. I have tried to paint a broader picture of her than the emotionally fragile old woman she became in her later years. She was so much more. In addition to possessing a wide-ranging intelligence, she was kind, generous, fun, and extraordinarily talented.
The centerpiece of this story is my mother’s requiem, a composition which she wrote as a memorial for two young men who died in separate accidents. This book is also my requiem for friends I have lost, for my mother, and for the long chapter of my life that ended somewhere in the midst of all these events.
ONE
PRELUDE
Remember thy servant, O Lord.
Her hands are quiet now,
She moved in quiet rooms.
Her silence now has found her,
Fragile and translucent as a shell polished by the sea.
Rosalind MacEnulty
An American Requiem
ONE
SEPTEMBER 2009
My cell phone starts singing “Love Me Do” at seven in the morning. I’ve been awake for an hour, lying in bed, thinking, wondering what to do about my crumbling house and my crumbled marriage—abandoned like an old broken sofa by the side of the road. The sound of the phone so early brings on a rush of adrenaline. What now? It’s my daughter, Emmy, in a quandary about a paper that’s due in an hour. I’m almost grateful to be given a problem that I can handle so easily. I get up and shoot her some suggestions by email. Emmy is in college now and rarely needs my help anymore, but her moment of desperation brings me back to all those times when she was younger—when she forgot her homework or lost her keys or had some other mishap and I always ran to the rescue.
A couple of hours later, my friend Darryl calls. He’s agreed to go play Scrabble with my mother on Tuesday and Thursday evenings since I have late classes to teach. He wants to know if I’ve seen my mother this morning. I haven’t.
“Well, she wasn’t doing well at all last night,” he says. “She was very slow and only able to come up with three-letter words. Then, when it was time to go, I asked her if she wanted me to take her upstairs. She said no and then she said yes. So I started to walk with her to the elevator. She was wheeling herself, and she turned and went in the other direction. I tried to correct her, but she insisted I was wron
g and when I tried to push her wheelchair to the elevator, she began to fight me.”
Oh God, I’m thinking, picturing my tiny mother, her mouth set in grim determination, her silver head lowered like a bull, and her hands with their purple bruises clutching the wheels of her wheelchair. And poor hapless Darryl, ever the gentleman, trying to convince her to go the right way.
“I finally let her go in the other direction and then after she couldn’t find the elevator, I pushed her the right way but by then she was very upset.” And this too, I can imagine: the resigned despair in her eyes, the fluttering hands, the hangdog look, and the inarticulate stammering.
“Yes,” I say. “Every time she goes to the hospital she comes back a step lower. I’ve no idea what to do.”
And it’s true. I’ve no idea what to do. They surely won’t keep her at the Sanctuary indefinitely if she’s that diminished. They do have a memory care unit—a locked door at the end of the hallway. I’ve never been inside, but I’ve heard sounds: people calling out, people laughing sometimes, or crying.
It reminds me of a story by Ursula Le Guin that I often assign to my students called “The Ones Who Walk Away from Omelas.” Le Guin describes a happy, almost perfect society—except for the neglected child kept chained in a basement. This is the price that has to be paid in order for the society to be as delightful and orderly as it is. Everybody studiously ignores the horrid basement and the unspeakable cruelty in which they are all complicit. Though I know the memory care unit is not a bad place nor run by bad people, still, I have ignored it with the same suppressed horror as the people in Le Guin’s story ignore the child in the basement.
But why am I even thinking about the memory care unit? We can’t afford that. She’d most likely have to go to one of the nursing homes where the lumps of flesh are gathered in their wheelchairs, dozing and drooling and occasionally looking up to ask where they are and if you will take them home.
Then I pause and wonder: maybe it’s the new prescription the doctor in the hospital gave her. So I call her family doctor and ask him to “d.c.”—discontinue—that medication. Maybe I can buy her a few more months. If she can just make it till February 21 when I plan to take her back to the church in Jacksonville, Florida, to hear her music one more time. Her requiem.
TWO
NOVEMBER 1982
I sit in one of the pews of the Church of the Good Shepherd, an Episcopal church in Jacksonville, Florida, where I grew up. Blue velvet kneelers are propped up in front of each wooden pew. So many times I knelt here as a child, not praying but somehow enjoying the meaningless ritual—stand up, sit down, kneel, sit down, kneel, sit, stand. Religion was cloaked in secrets and mysteries. When you know the ritual, you’re in. I liked being a member of that secretive club.
But I am no longer a child. I am twenty-six years old. I have been a heroin addict and a recent resident of the Florida Correctional Institution for women. I have even more recently graduated from college with high honors. I have a teaching job at a community college and am thinking about going to graduate school. It feels right to return to the fold this Sunday evening to be present at a performance of my mother’s requiem—her masterwork. I am not here out of love for sacred choral music. I am here out of gratitude to the woman who stood by me and waited while I explored the realms of degradation and despair and then who helped me get back on my feet.
I gaze around at the stained glass pictures. It’s evening now so the light does not shine through them, and their brilliant colors are muted and dull. Small square and triangular stones make up the floor of the aisles. These floors always fascinated me with their odd hieroglyphs. I inhale the stone smell, old with a fusty sort of holiness. It has been a long time since I’ve been to my mother’s church.
I stopped going regularly when I was about twelve. Before that I had to go because my mother was the organist and the choir director, and I couldn’t stay at home alone. Besides, I liked being in that Gothic castle with its secret passageways, dungeons, and sequestered rooms full of pipes for the organ. The choir was my extended family. My godmother was a soprano in the choir. My godfather a baritone. The rest of them were like assorted aunts and uncles. I even adopted the church secretary as my grandmother.
Then I became a teenager, and figured I didn’t need all that family anymore and damn sure didn’t need to have some stupid God preached at me every Sunday. Of course, as Episcopalians we weren’t exactly fire and brimstone, but the liturgy entailed telling God how worthless we were and how thankful we were that his Son died for our sins. And none of it made any sense to me. I was too young to have committed any sins anyway.
But in the ensuing years life has done me the favor of kicking me around a bit, and though I still don’t get the dying-for-mysins bit, I have now committed some grievous sins of my own, and I have come to believe that something larger than me exists, something ineffable. I’m not sure, however, that it lurks in this big stone building with its stained glass depictions of ecstatic saints and doubting disciples. Or maybe it is here. Maybe it’s everywhere, like they say.
My brother John (or Jo as we call him in the family), wearing tails and looking magisterial, comes down the aisle, bearing the conductor’s baton. An orchestra awaits him. My mother is seated at the console of the big organ with its four keyboards and its row of foot pedals. The choir is robed and ready. The concert begins.
My mother has always composed. At Yale she studied with the famous composer Paul Hindemith; he told the dean that she was his most promising student. In her professional life, she’d written original arrangements for her various choirs to sing and a couple of commissioned musicals, and she’d even rescored the music for The Lost Colony, an outdoor drama in Manteo, North Carolina.
Marriage to my father, however, had kept her early ambitions in check. My brothers said that he threw her compositions in the fireplace when she was younger. She told me that the most crushing thing he ever did to her spirit happened one time when he came into the music room of our house and found her working on a composition. Overhearing the work, he sneered and said, “That’s facile, isn’t it?” He did much worse things, but his snide comment about her work stung the most.
Tonight is her vindication. She’s written a piece from her heart, a requiem for two young men. The men (both in their early twenties) died in separate accidents within a couple of weeks of each other. They were sons of close friends of hers. As a woman with sons of her own, as a friend, as a human being, she was deeply affected by this sudden, inexplicable loss of promise. “Why do people die so young?” she wondered. “Why am I still alive?” Not being a particularly religious person, she couldn’t fall back on that old standby: God’s will.
I’m sitting in the crowded church, listening to this strange, sometimes atonal piece. It doesn’t sound like traditional church music; the voices are haunting. The saints in their stained glass prisons hold their breaths and listen. Do the dead gather to hear the music written in their honor? The list on the program includes more than just the two who inspired it. There are about thirty names of various church members who have died within the past year. I know a few of them.
And am I thinking about the dead I have known? Two of my cohorts from the bad old days died from drug overdoses. Other acquaintances died in drunk driving accidents, and others might as well be dead, locked away for years. No, I am not acknowledging them or any of the others. I am only looking forward. I have stepped out of my dark past, but I haven’t really found my place in the world, and I have no idea that resurrecting this piece of music will become my mission more than a quarter of a century later.
THREE
AUTUMN 1989
I place my lips around the regulator, take a breath, and fall back off the side of the boat into the greenish-blue water. My hair floats across my face as I turn belly down and swim toward the bottom. The water is murky, churned-up sand making a thick filter. I look for my dive buddy, Joel, and spot his fins waving languidly. He’s swimming to
ward the reef. A thin layer of water seeps into my wet suit and begins to warm me.
The current pushes and shoves. The surface is choppy, and my stomach didn’t like the ride out. I’ve always been prone to motion sickness, so scuba has been a challenging hobby, but in the past, as soon as I’ve gotten below the surface, my stomach has relaxed and I’ve been able to enjoy the serene beauty of the coral reefs or the wrecks. Not today. The egg biscuit I had for breakfast taps on the door of my esophagus. I remember my dive instructor advising, “Don’t puke in your regulator.”
I can no longer hear the purr of the boat engine. The only sound is the steady stream of bubbles pouring out of my regulator. I check my air tank and see that it’s about three-quarters full. I’m not enjoying the dive. My stomach won’t unknot. I feel tired and can’t see much of anything. We’re above the reef; a few random angelfish slide by. I swim alongside Joel and our eyes meet through the masks. He makes the okay sign, and I make it back. I’m not really okay, but since this is such a crummy day, I can look forward to a short dive.
A strong arm pulls me back on the boat. My feet with the fins on them are unwieldy. I feel like a clumsy dinosaur until I slip my buoyancy compensator and the tank off my back.
“How are you doing?” Joel asks, pulling off his mask.
“I’m still seasick,” I answer. “I don’t understand why.”
“Well, it’s kinda rough out there.”
“Not that rough.”
I lean back and don’t say anything else. I’m too sick to talk. The other divers are all back on board, and I can hear the boat engine roar as it’s pushed full throttle. Once the boat starts speeding over the waves, the tossing will lessen and I’ll get a little relief. Joel sits beside me and pats my arm. Joel is an editor at the newspaper where I work. My boyfriend, Hank, is out of town, a fairly common event, and Joel is one of the people I pal around with when he’s gone.
Wait Until Tomorrow Page 1