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  Praise for

  WHERE THE LIGHT GETS IN

  “Kimberly Williams-Paisley has written a book that is both heartbreaking and essential. I loved it for all the love it contained but also for the wealth of practical information. The Williams family went down a hard road with dementia, and we can all benefit from their experience.”

  —ANN PATCHETT, NEW YORK TIMES BESTSELLING AUTHOR OF BEL CANTO AND STATE OF WONDER

  “The relationship between a mother and daughter is one of the most complicated and meaningful there is. Kimberly Williams-Paisley writes about her own with grace, truth, and beauty as she shares her journey back to her mother in the wake of a devastating illness.”

  —BROOKE SHIELDS, NEW YORK TIMES BESTSELLING AUTHOR OF THERE WAS A LITTLE GIRL

  “Kim’s story really resonated with me, as it will with countless others. Her beautiful, heartfelt book is an absolute must-read for mothers, daughters, and anyone dealing with a loved one living with dementia. It will also help to bring comfort to families facing any type of life-altering situation.”

  —ROBIN ROBERTS, GOOD MORNING AMERICA

  “Where the Light Gets In is simply wonderful…and sad…and brave. This book will bring comfort to families who are experiencing the complex and confusing journey of progressive dementia while still celebrating moments of true joy. Williams-Paisley’s narrative and the resource section will help people know they are not alone.”

  —ANGELA TIMASHENKA GEIGER, CHIEF STRATEGY OFFICER, ALZHEIMER’S ASSOCIATION

  “Where the Light Gets In left an indelible mark on my heart. The story of love and acceptance and the unbreakable bond of family, this book will be a comfort to so many families who are going through what Kim’s went through and will be a much-needed source of strength for all those who read it.”

  —SHERYL CROW, MUSICIAN

  “Generous, human, and healing; that’s what this book is. Kimberly Williams-Paisley has invited us into her life and her family so that we may know ourselves better. By sharing her story with such vulnerability and honesty, she makes it accessible to everyone, with or without a personal connection to dementia. Through it, I had the experience of seeing my own family differently, understanding my desire to love more, and connecting deeply to my own stories of illness, grief, compassion, empathy, and redemption.”

  —CONNIE BRITTON, ACTRESS

  “Informative, relatable, and heartbreaking, Where the Light Gets In is a must-read for those who have a loved one struggling with dementia.”

  —SETH MEYERS, HOST OF LATE NIGHT WITH SETH MEYERS

  “Kimberly Williams-Paisley’s experience with her mother’s dementia is very moving, and you’ll be touched by so much in this book. This topic needs national attention, and Where the Light Gets In helps bring focus to that need.”

  —WILLIAM SHATNER, ACTOR

  This book is a memoir, a true story based on my recollection of events in my life. I’ve changed the names and identifying characteristics of some people to protect their privacy. I’ve rearranged and/or compressed parts of the narrative, and re-created dialogue to match my own and others’ best memories (often complemented by diaries, emails, and family videos) of conversations from years past.

  Copyright © 2016 by Kimberly Williams-Paisley

  Foreword copyright © 2016 by Michael J. Fox

  All rights reserved.

  Published in the United States by Crown Archetype, an imprint of the Crown Publishing Group, a division of Penguin Random House LLC, New York.

  www.crownpublishing.com

  Crown Archetype and colophon is a registered trademark of Penguin Random House LLC.

  Credits can be found on this page, which is an extension of the copyright page.

  A portion of the author’s proceeds has been donated to the Alzheimer’s Association.

  Library of Congress Cataloging-in-Publication Data

  Names: Williams-Paisley, Kimberly, 1971– author.

  Title: Where the light gets in : losing my mother only to find her again / Kimberly Williams-Paisley.

  Description : First edition. | New York : Crown Archetype, [2016]

  Identifiers: LCCN 2015036024 | ISBN 9781101902950 (hardback) | ISBN 9781101902974 (tradepaper) | ISBN 9781101902967 (ebook)

  Subjects: LCSH: Williams-Paisley, Kimberly, 1971– | Aphasic persons—Biography. | Mothers and daughters—Biography. | Dementia—Patients—Family relationships. | BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. | HEALTH & FITNESS / Diseases / Alzheimer’s & Dementia. | BIOGRAPHY & AUTOBIOGRAPHY / Entertainment & Performing Arts.

  Classification: LCC RC425 .W55 2016 | DDC 616.8/30092—dc23 LC record available at http://lccn.loc.gov/​2015036024

  ISBN 9781101902950

  eBook ISBN 9781101902967

  Cover photograph: Lara Porzak

  v4.1

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  Contents

  Cover

  Title Page

  Copyright

  Dedication

  Foreword

  Epigraph

  Introduction

  Chapter 1

  Chapter 2

  Chapter 3

  Chapter 4

  Chapter 5

  Chapter 6

  Chapter 7

  Chapter 8

  Chapter 9

  Chapter 10

  Chapter 11

  Chapter 12

  Chapter 13

  Chapter 14

  Chapter 15

  Chapter 16

  Chapter 17

  Resources

  Acknowledgments

  Credits

  For my mom

  Disease, by definition, alights on an individual. But the ripple effects of a diagnosis go far beyond a single life. Not just patients but families, too, become accustomed to frustration and fear as constant companions in the early days. Fantasies of escape take hold, as does the hope against hope that a mistake has been made. Even when some form of acceptance is gained, it’s tempting to take a diagnosis as confirmation of our darkest views of the world: proof that happiness is not to be trusted, that demise is the cosmic price we have to pay for living.

  And yet, as I can attest from my own experience, when a family operates as a loving unit, it is capable of transmogrifying even the bleakest and most unwelcome of events. I don’t pretend to know how it works; there’s a magic to it. When the road is challenging, navigating the ups and downs together reveals abilities we never knew we had, and the strength to carry a weight we never expected. We flex new muscles and are surprised to discover they were there all along.

  Linda Williams was one of those people who come into your life—friends, family members, sometimes colleagues—whose compassion for others and outlook on life resonate with you forever. As our foundation’s first major-gifts fundraiser, she inspired our staff with her ability to convey to supporters both the complex neuroscience we were driving and the simple optimism that our efforts would speed a cure. And so, though our staff works every day with patients and families battling a progressive neurological disease, we were devastated when she revealed to us that she’d been diagnosed with a rare form of dementia, one that would diminish and then take away altogether her astounding powers of communication.

  But Linda’s husband, Gurney, and their grown children saw her diagnosis as a call to arms, and the support system they created was remarkable. They surrounded her with compassion, providing help when needed and making light of symptoms when they could. When Kim first wrote publicly about Linda’s illness in a magazine essay, I was reminded of all the good that can come from sharing our stories, in spite of how risky it feels (something my wife, Tracy Pollan, and I remember all too well from our own experience lettin
g the genie out of the bottle).

  That magazine essay became the seed of this book, which I’m so grateful to Kim for sharing, in all its honesty, poignancy, and humor. She has helped to rekindle a national dialogue on family, sickness, and health, and she’s given countless individuals an opportunity to talk about their own experiences, struggles and fears, hopes for the future. All at a time when scientists and researchers believe we are closer than ever to breakthroughs and possible cures for the brain diseases that touch three in five American families.

  Kim clearly inherited her mother’s deftness with words, the same facility that used to blow everyone at our foundation away. Yet in spite of the beauty of her writing, Kim’s story ultimately is one of inventing a new language, one that allows her and her mother to wordlessly convey: I get you. You understand me. We love each other.

  Come to find out—that’s enough.

  Michael J. Fox

  If the brain were so simple we could understand it, we would be so simple we couldn’t.

  —LYALL WATSON

  It was almost a picture-perfect wedding. Not the Hollywood version most people saw in Father of the Bride, which actually took weeks to shoot. I mean the real one. The one that took about an hour, and began a marriage that has thrived for more than thirteen years and counting.

  The film was about a high-ticket formal affair. The real thing was modest by comparison. It was designed around a secret. Only our families, our officiants, and Brad’s best friend, Kelley, knew we were actually getting married that day. We wanted it to be a surprise. That was our way of mixing things up a bit, of taking the pressure off the event. For years audiences had seen me as the bride from their favorite wedding movie, and I was worried people at my real ceremony would say, “It was nice, but the movie was better.” And Brad, a musician, grew up playing at other people’s weddings, and hated the tension he felt at every one. We were determined to make ours fun.

  The only real concern I had that day was my mother, Linda. When I look back now, the pieces of the puzzle fit together in a way that they couldn’t have then. My big day gave me the first glimpse into what was coming.

  In the Hollywood version, Mom was just an extra, on-screen for a few seconds. You can see her there still, in the reception scene. She’s wearing a sparkly gold top and giant pearl earrings—borrowed from wardrobe—and her hair is in tightly permed curls. She’s laughing with Diane Keaton and drinking fake champagne. You can’t hear their words, but she and Diane were giggling about pet dogs. She looks happy and self-confident.

  But in the oceanside hotel room in Malibu on the day of my real wedding, Mom was crying because she wasn’t part of the ceremony. She’d always loved the bustle and laughter of a party or celebration, didn’t want to miss a minute of fun, and was often the last to leave. Now, it seemed, she’d only just realized that she had no role to play, no words to say, in a major family event. She felt left out.

  Long before that day, Brad and I briefly discussed the simple program with my parents over the phone. We invited my dad to stand up, introduce me to Brad’s guests, and talk about our family. We designed the rest of the ceremony without their input. We asked Kelley to honor his and Brad’s long friendship with a little speech. We asked Brad’s Baptist preacher, Mike Glenn, and my Episcopal priest, Susan Harriss, to fly out to California and marry us together. That was it. Simple and easy.

  I wanted Mom to be involved in other aspects of the preparation. I sought her help on one of my dress fittings, and consulted with her on the guest list. She added more than two dozen people because she didn’t want anyone to feel excluded.

  Now, as we went over the specific plan hours before the ceremony, she wept. I felt terrible that she was upset about it, but I didn’t know what we could add at this point. Susan stepped in and suggested that Mom read the letter of Paul to the Colossians. My mother is the least religious person in our family, and I don’t know if she’d ever recited a Bible passage aloud. But she seemed comforted for the moment.

  That rainy evening in the chapel at Pepperdine University, all our guests inside believed they were attending the rehearsal. They thought it strange, I’m sure—and maybe even a little annoying—that they were even asked to come. There were no ushers. No quiet organ music. No buzz of anticipation. No separation of bride’s guests and groom’s guests. Friends and family in casual clothes sat or wandered around as they wished. Waiting for me to arrive, my husband-to-be chatted and chewed gum.

  I was back in the hotel room with my brother, Jay, and sister, Ashley, getting ready to go. Both of my siblings had lived with me at different times years before in my tiny house in Santa Monica. Jay was my housemate while he worked long hours as a camera assistant on television shows and then after he quit to become a firefighter. He slept in my second bedroom, stored his unicycle and surfboard in my basement, and helped keep a tidy home. We sometimes took meandering adventure walks to unplanned places, often winding up at the pier fifteen minutes away and riding the Ferris wheel with the last dollar bills in our pockets.

  Ash crashed in my basement after she graduated from college and got cast almost immediately as the female lead in an NBC series, Good Morning, Miami. She was thrust into the spotlight, for better or worse, as I had been. In the hotel room, Ash had taken off her underwear and given it to me because mine was showing lines under the thin white fabric of my wedding dress—my something borrowed. I could share pretty much anything with either of my siblings, and I was grateful they were there to calm me.

  We left on time. My father, Gurney, drove cautiously on the wet roads. Mom started singing Christmas songs, off-key, and Ash and Jay somewhat reluctantly joined in. It was March. They suddenly seemed manic, in serious need of stress release. “Christmas is coming, the goose is getting fat!” they screamed.

  Ash and I clutched hands in the backseat, as we had before in scary times. I would be the first of the three of us to be at the altar, and we didn’t know what to expect. I looked out the window at the clouds and tried to remember to take deep breaths.

  We pulled up to the chapel, ducked through the rain, and ran inside. I carried a garish bouquet of multicolored ribbons, crafted from the wrapping on the gifts I’d received at my bridal shower. The real bouquet, made of three dozen white roses, was hidden for me somewhere near the altar.

  Our wedding planner, Mindy, introduced herself to our guests, who settled down to listen.

  “Thanks for coming to this rehearsal,” she said. “We’re just going to go through the moves for tomorrow so we know what we’re doing.” She put out her hand for Brad to spit out his gum. The congregation laughed. “I’m a mom!” Mindy said, shrugging.

  I think back to our wedding now and choke up.

  My cousin Stephen was still alive and strong. Brad’s aunt Rita hadn’t been taken yet by breast cancer. My mom stood at the back of the chapel, waiting to take her walk to the altar with Jay. She’d had a hard day, but at that moment she was radiantly happy.

  They started too fast. Mindy shouted, “Slow down!” And they halted. Then Mom took her moment and started to strut. She tilted her head back and struck a dramatic pose. Infected by her impish spirit, people cheered. That was Mom at her best.

  No one stood when it was my dad’s and my turn to walk. At the altar, with my back to the crowd, we struggled to unbutton the long denim coat. I whirled and revealed the white gown and roses. Even then, many of the eighty guests still didn’t know what was happening. Susan said, “For those of you who haven’t realized it yet, this is the actual wedding.”

  Brad reveled in the surprise we’d been able to pull off, and I took a little bow.

  When it was time for Mom to start her Bible reading, she mispronounced “Colossians.”

  “A reading from the letter of Paul to the Colothians,” she said.

  Her voice was soft, tentative. “As God,” she said and stopped. She tried again.

  “As God’s chosen holy beloved…Clothe yourselves with compassion, kindness
, humility, meekness, and patience. Bear with one another. And if anyone has a complaint against another…” There she paused for a few seconds, then laughed.

  “Excuse me,” she said, holding up a finger. There was another long silence. I could see Ash, who was standing up as my only bridesmaid, sharing my urge to reach out to our mother and help. Before either of us could, she tried again.

  “If anyone has a complaint against another, forgive one another, and if anyone has…” She faltered. “If anyone has a complaint against another,” she mumbled. “In each other.” She threw her hand out to her side as though the reading were riddled with typos. When finally she finished, I realized I’d been holding my breath.

  Our pale blue station wagon fishtailed down a hill on icy snow. Home was just ahead, a sharp and narrow right turn through stone pillars off Howe Place in Bronxville, New York. We were in trouble—moving faster, skidding nearly out of control. If Mom spun the wheel too hard and we missed the driveway, the Buick would whirl a hundred feet to the bottom of the street and plunge down a flight of stairs on the other side of an intersection.

  There were no rules in 1979 about kids sitting in the backseat. So I was Mom’s co-pilot in the front. I could feel her panic rise. I looked out the window at the cold black sky and prayed in fear to the brightest star. In my eight-year-old’s world, it was the soul of my grandfather, who was something of a saint to me and had died months earlier.

  Grandpa, I prayed. Save us. We need you.

  “Shit,” Mom said. I’d never heard her say that word. I prayed harder. Grandpa, PLEASE. Help Mom.

  We were entering the perilous turn. She seemed more alarmed than I’d ever seen her as her hands gripped the wheel. I struggled to keep my eye on that star. Time slowed. My mother screamed.