Mother in the Middle: A Biologist's Story of Caring for Parent and Child

Mother in the Middle: A Biologist's Story of Caring for Parent and Child

by Sybil Lockhart
     
 

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Sybil Lockhart, a Berkeley neurobiologist, became a "mother in the middle" when she was pregnant with her second daughter and her mother was diagnosed with Alzheimer's disease. What makes Sybil's story different, and so powerful, is that she understood the neurological processes, by turns exciting and devastating, that were taking place in the brains of those she… See more details below

Overview

Sybil Lockhart, a Berkeley neurobiologist, became a "mother in the middle" when she was pregnant with her second daughter and her mother was diagnosed with Alzheimer's disease. What makes Sybil's story different, and so powerful, is that she understood the neurological processes, by turns exciting and devastating, that were taking place in the brains of those she loved. Interweaving her scientific expertise with her own complicated emotions, she writes with elegant simplicity and breathtaking honesty about biology's inevitable, powerful effects on the people around her.

When her mother begins to show the first subtle signs of the disease that is slowly ravaging her brain, Sybil refuses to consider the possibility of dementia, insisting that all her mother needs is a daughter nearby. She relocates her young family to her beloved San Francisco Bay Area, where her memories of her mother and her childhood are deeply anchored. As Sybil sets about creating new memories against the backdrop of her past, the emerging undeniable truth about her mother's condition threatens to overwhelm her ability to maintain her career, nurture her marriage, raise her young daughter, and care for herself during her second pregnancy. Even though she appreciates the beauty of the dramatic biological processes at work inside the brains of her family members, she also understands their inevitable power, and she bravely describes the complicated emotions -- denial, rage, ambivalence, exhaustion -- that so many caregivers experience.

With a unique combination of science and intimate experience, Mother in the Middle is a story of mothers and daughters, science and creativity, and life's exquisite intertwining of love and loss.

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Editorial Reviews

Publishers Weekly

In this impressive debut memoir, Lockhart, a former UC-Berkeley neurobiologist, chronicles her struggle to raise two daughters while tending her own mother, rapidly deteriorating from Alzheimer's. A masterful storyteller and lyrical in describing biological processes, Lockhart renders perceptive family portraits, tracing how the mundane movements that anchor everyday life-driving to the grocery store, making coffee, folding laundry-can warp when stymied by dementia, and strain even the strongest relationships: "The distress Ma projects when her schedule is disrupted infects me immediately." Lockhart treats her mother's mental unraveling as a painful foil to the budding vitality of her own growing family, but it is the intense relationship with her mother that emerges as the book's central duet. For all her fascination with the minute workings of neurobiology and the development and decline of the brain, Lockhart suggests how easily her scientific knowledge is thwarted by her denial as a daughter. The question of who is the parent and who is the child-asked by so many dealing with Alzheimer's-remains unsettled long after Lockhart's drama arrives at its honest, if startling, conclusion. (Feb. 3)

Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
Library Journal

In her first book, Lockhart, a biologist, relates noticing small changes in her mother's behavior that turn out to be early signs of Alzheimer's disease-her increasing forgetfulness and anxiety over small matters, her disorientation and fretfulness. At her husband's insistence, Lockhart finally makes an appointment with a neurologist who diagnoses Ma with Alzheimer's. Her symptoms improve a bit with medications, although she suffers from the drugs' side effects. As she watches Ma's condition deteriorate, Lockhart realizes, "This is my future. My two children will grow as my mom disintegrates, and I will be there in the middle." Although Ma's symptoms worsen, she continues to live alone until she unexpectedly dies in her home. As Lockhart cleans out the contents of her mother's house, she discovers that Ma had kept a diary for years, even as her memory was failing. She writes that her mother's "words connected me to my children as they grew and to my mother as she faded away." Often heartbreaking, Lockhart's book is highly recommended for Alzheimer's and memoir collections. A terrific companion to Elizabeth Cohen's The House on Beartown Road and Joyce Dyer's In a Tangled Wood.
—Karen McNally Bensing

From the Publisher
"Mother in the Middle is a caregiver's journey told from the most unique vantage point. As a neurobiologist, Sybil Lockhart reveals a fascinating view into an Alzheimer's we normally can't see — into the very molecules and neurons gone haywire inside her mother's brain. As a daughter, Lockhart reveals her mother's Alzheimer's as she sees and feels it with unflinching honesty, empathy, and love. It is a story about losing a mother and becoming a mother, about a mother's mind, told from a daughter's heart." — Lisa Genova, author of Still Alice

"Sybil Lockhart's insights as a neurobiologist and a daughter watching her mother disintegrate from dementia are meaningful and poignant — and her writing about mothering her own daughters equally so. In the midst of the pain are uplifting lessons and a new map for living with the illness of a loved one." — Richard M. Cohen, New York Times bestselling author of Blindsided and Strong at the Broken Places

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Product Details

ISBN-13:
9781439156445
Publisher:
Touchstone
Publication date:
02/03/2009
Sold by:
SIMON & SCHUSTER
Format:
NOOK Book
Pages:
320
Sales rank:
486,782
File size:
0 MB

Read an Excerpt


CHAPTER 1

Friday Night

Dinner is over. This is the windup period before bedtime. My husband, Patrick, is working late. I'm trying to load the dishwasher while five-year-old Zoë spins in circles on the blackand- white tile floor holding her fairy wand, and one-year-old Cleo shuffles back and forth in Patrick's black loafers, giggling.

"Five minutes, girls," I warn, glancing up at the wall clock over the sink. It's 8:35.

Ma, still seated at the kitchen table, looks down at her lap, bending forward so I can see the hump of her back under her favorite red plaid flannel shirt. Her gray hair is greasy and thin and falls only to her shoulders, but looking at her, I remember her hair of many years before, long and dark. This lesser hair seems gentler somehow -- a quiet, softened version. And Ma, once the head of my childhood household, the breadwinner of the family, and the coordinator of all our activities, has softened, too, softened and receded. She has difficulty initiating conversation; she can't find the courage, or she can't find the words; I'm not sure which. She frets and hovers, unsure of herself and afraid to ask for help.

Clasping her hands together now, Ma looks up with a plaintive, pained tightening of the skin around her eyes and opens her mouth to speak.

"No. Never mind." She shakes her head and looks back down.

"What, Ma?"

"No, nothing. I'm just being stupid. Never mind me."

I step forward, laying my hand on Ma's shoulder. "Ma. We try not to use that word around the kids, okay?" I feel her wince, and I quickly add, "Plus, it's not true."

"Oh, I knew that. That was stupid. No, I mean -- not stupid!" She glances quickly in Zoë's direction. "Never mind. I'll just shut up."

I can't decide whether to smile or scowl. "Ma," I ask, with as much patience as I can muster, "what is it?"

But I know; I know it by heart, because she stays over most Friday nights now, and it's the same every week. She wants the TV on, but the remote control confuses her. She needs the bed made up, but she doesn't understand how the futon couch unfolds. And she expects to be in bed by nine. If I go up to bathe the kids and don't get back down in time, she'll stand at the foot of the stairs, sighing dramatically and wondering out loud what's keeping me. She'll fretfully pull at the futon but stop herself and again glance up the stairs. If I tuck in the kids and walk back downstairs at nine-fifteen instead of nine, it may as well be two a.m.; the waiting and the uncertainty of those fifteen minutes weigh on her that heavily.

The problem for Ma is that if she doesn't do everything just so, something might slip by her. It could be something small, like forgetting to brush her teeth. But it could also be a stove burner left on, tall hot flames licking out into the dark kitchen for hours as she sleeps. It could be the door left standing wide-open with the black night yawning in. Or maybe her whole world will dissolve. The truth: it is dissolving, right there inside her head. Sticky mats of neurons slowly clot there, gradually obscuring patches of her own life from view. Some of her perceptions remain clear; others are very slowly melting into a murky blur. And she doesn't know what will go next.

The schedule saves her. Clean and sure, it keeps her from wondering. Her list is intact, and she checks it off: 6 p.m. dinner. 8 p.m. television. 9 p.m. bathroom & pills. Then read in bed. If the bed is not made up well before nine, something feels askew. She doesn't quite understand, but she feels out of control. Maybe she has missed something important. Maybe she's done something wrong. So she lives in a constant state of low-level worry that swells into a panic as the clock ticks past the hour.

Zoë zaps Cleo with her wand, eliciting a gleeful toddler shriek. She strikes again, but too hard, and Cleo bawls. Remorseful, Zoë tries to soothe her by picking her up, hauling her to the couch, and kissing her ferociously. "It's okay! It's okay!" she insists, as Cleo begins to cry in earnest. I look feebly from my two kids, now crying together in long, wavering wails, to Ma's anxious hands, wringing each other in her lap. The distress Ma projects when her schedule is disrupted infects me immediately. As she begins to fret, so do I. I have to soothe her. I have to make it stop. I must get these kids into bed, too, but if I don't take care of Ma this instant, my own world may dissolve. And in a way I hate her for it; I hate her for making this helpless, slow descent into the darkness.

Two years ago I thought my life was complex. I worked at UC Berkeley running an undergraduate neurobiology lab class, and at home I took care of my toddler. Between work, child, marriage, and friends, there never seemed to be a free moment. Now I see how easy I had it. My weekends were free, I had only one dependent, and the neurobiology stayed neatly confined in incubators and under microscopes. When I locked up the lab at five-thirty to go home, my life was essentially my own. Now at home I am never free, and I'm continually bombarded by real-life neurobiological phenomena. I spent five years in graduate school and another three in a postdoctoral fellowship, learning all about the brain, but in taking care of my family I find that I'm more preoccupied with the workings of the mind and nervous system than ever before.

As mother to a toddler and a kindergartner, I am so used to being able to fix things, to nourish. I kiss the boo-boos. I serve the food. I get up to comfort them when they cry in the night. And I see them heal, learn, and grow; they rise up into the light, gathering knowledge and developing insight. As they play and think and create, becoming clearer and brighter, I can almost see the myriad intricate synaptic connections being sculpted and refined within them. Meanwhile Ma seems to wilt and fade, as sticky protein oozes into her synapses and the fibers that structure her neurons begin to crimp and tangle. The girls' development puts Ma's dementia in dramatic relief. I think I am less tolerant of her mental deceleration because I'm simultaneously witness to the tornado of their intellectual development, and because I get to participate in their progress. No matter how much I give to Ma, she only becomes smaller. Ever so slowly she loses comprehension of the world, and as she does, she loses pieces of the person she once was to me. That is how it works, that is how she incites my empathy and my rage in equal parts. I should be able to fix it. I can't.

All though my childhood, Ma was the provider. Daddy was legally blind and received disability from the county. She made most of the money -- and she did all of the cooking. She taught us to read, and she took us for walks in the hills, where she shared her love of the outdoors. On Friday nights my parents' friends gathered for guitar playing, puns, political discussion, and drinks. While the kids ran wild, Ma served smoked oysters; she made the martinis. She was strong-bodied and had strong, simple principles. Care for your loved ones. Eat well. Enjoy sex. Work for peace.

Ma was warm and welcoming. She cared about animals, about her first-grade students, about the planet. She told me that the most important thing in life was love: finding someone to love, finding someone to love you. I know this to be true, and I repeat it to my own children. Ma also believed in plain words. When the county jail down the road was rebuilt, the new sign said "Detention Center." For three mornings after that sign went up, Ma walked the dogs down to the new building at six a.m. and tacked a banner over the new sign. "It's a JAIL," it read, and in smaller script at the bottom, "Detention Center indeed!" She lettered her banner in the same beautiful calligraphy she used to make our Christmas cards and the leaflets she handed out at peace rallies in San Francisco.

With every passing day, Ma remembers less of our history together, whereas the layers of meaning and memory seem to keep deepening for me. That's true tonight, as I think about bedtime in my childhood. It was complicated by the fact that my sister and I essentially occupied our own flat at night. The house we lived in was on a hill. It had an upstairs and a downstairs, but the two were not connected by an indoor stairway. When I was a baby, we all lived on the ground floor, which was the top floor, measuring in at about five hundred square feet, and this cozy arrangement suited me just fine. But before I had stopped wetting the bed, my parents decided to use our bedroom instead as a library and study. They moved Alice and me to the two small downstairs bedrooms. Every evening we made the journey down the side stairs, past a hedge of sweet-smelling oleanders, along a cement path that ran the length of the house, and then through the enclosed porch that served as my father's workshop, to our two little rooms at the bottom of the house. We turned on all the lights as we passed through the workshop, to chase away the fearsome shadows cast by Daddy's power tools, and then sprinted for our beds.

In winter and spring, when we rose before daylight and dashed barefoot through the rain to the warmth and safety of Upstairs, it was impossible not to step on the snails. I felt the wet crunch as I ran up the slippery steps, and then there I was in the dining room, with wet hair and freshly dead, slimy snail innards all over my bare feet. I would frantically wipe the slime off onto the burgundy shag rug, reaching for a tissue to get the last bits out from between my toes. There was always coffee brewing. The smell of coffee meant I had survived another night down there; it meant I was back with my parents. I was safe. To this day that smell still signifies the comfort of Mommy, of Home.

I love passing on the snail-crunching lore of my childhood to five-year-old Zoë. She squirms, delighted and horrified to imagine it. But she asks me, "Why didn't you have slippers on? Why didn't Aunt Alice and you get to sleep upstairs anymore? What if you needed your parents in the night?"

These questions remind me of how I raced up and down those stairs, sure that the hands of child-grabbers were reaching out to catch at my ankles in the dark; how I ran past those looming shadows cast by Daddy's table saw and workbench on the porch. My parents didn't seem to understand that the locks on the doors downstairs couldn't possibly keep the scary things out; that there was no way for my sister to save me, since she was just a kid, too, and I knew Daddy and Ma wouldn't hear me screaming down there. For over a year, back when Ma still came down to tuck us in, I cried for her after she had gone back upstairs, and I hiccupped myself to sleep. It just didn't feel right to be so far away from her -- from Daddy, too, but especially from her.

The desperate longing I felt those dark nights downstairs informs me now as a parent and as a caregiver: this is what you don't do. You don't leave them not knowing where you are. You don't leave them scared and lonely on another floor of the house with the darkness and the rain and the slimy snails between you. Maybe this is why, when my turn arrives, as forty-year-old daughterturned- mother, I can't just leave Ma downstairs, worried and waiting. Instead I ask Zoë for help.

"Sweetie, can you please read Cleo a little story while I help Gram get ready for bed?"

Zoë's face lights up with big-sisterly responsibility, and Cleo swipes at a tear, looking up expectantly. They make it all so much better sometimes, for me and for each other. I want to stop and scoop them up in my arms to thank them; I want to nuzzle them and lose myself in their elastic, happy warmth -- but I know I've just bought myself a maximum of one and a half minutes. I lead Ma to the futon in the living room, which doubles now as her room most weekends, and together we perform the ritual of arranging the five blankets and two pillows in exactly the same order as we do every Friday night. This is an odd feature of Ma's condition; as she forgets events of increasing importance, the simple, quotidian routines like laying blankets on a bed have taken on a disproportionate importance for her. In her fear of losing track of things, she has begun to guard the repeating patterns in life with a fierce, almost superstitious insistence: the blue blanket must go on top; the little red woolen throw must be at her feet. I wonder at her ability to recall this arbitrary sequence of colors and textures, given the way she recently got lost returning from the restroom in our favorite café.

I glance slyly at her.

"So, you want the blue one on the bottom, right?"

I'm teasing, partly to test if she still has her sense of humor, and partly because I've gone too long today without adult company and need a laugh. She looks up sharply, alarmed, but when she sees my smile, she returns it.

"Ah, you had me there for a second!" She laughs.

I'm gratified and relieved to have conjured this flicker of what I think of as the "real" Ma, and I grin as I tune the TV to the channel for her favorite program, Providence. I bring her the remote control and carefully point out the mute and off buttons to her. Finally, setting down her cup of Sleepytime tea, I kiss her soft cheek. I'm trying not to breathe in too much of her odd scent. My father died almost twenty years ago, and still it seems to me that her clothes smell faintly of his cigarettes, mingled with the odors of cooking oil and mildew. I tell her, "Tomorrow we'll go to Saul's for breakfast," and impulsively, I hug her tightly.

"Thank you," she says. She has tears in her eyes. My spontaneous warmth mixes with something like embarrassment, but much sadder. I don't like having to take care of her. When she's grateful like that, I feel like an impostor. "Don't you thank me, Ma," I whisper. Then I turn and herd the kids upstairs.

There the air smells sweeter and the lights seem warmer. After I change Cleo's diaper, I pause to bury my nose in her soft belly, and she giggles with pleasure. I snuffle, breathing in the warm, sweet goodness of her skin. Patrick, finally home from work, comes upstairs and leans in the doorway, telling me about his day, while I help Cleo into her pajamas. Wild and naked, Zoë bounces on the bed, and I turn to admire her lean stomach and legs. I heave a sigh of relief. We are a safe distance from Old; we are upstairs, together, healthy, and sane.

Copyright © 2009 by Sybil Lockhart

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