Where the Light Gets In

Losing My Mother Only to Find Her Again
Hardcover

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“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

Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on Nashville, or the wife of country music artist, Brad Paisley. But behind the scenes, Kim was dealing with a tragic secret: her mother, Linda, was suffering from a rare form of dementia that slowly crippled her ability to talk, write and eventually recognize people in her own family.
 
Where the Light Gets In tells the full story of Linda’s illness—called primary progressive aphasia—from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering.

Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, Where the Light Gets In is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.

Praise

“Heartbreaking but never sentimental, Williams-Paisley’s book offers an intimate look at a family’s struggle with a life-altering disease. It is also a daughter’s tribute to the mother whose disease offered her a new opportunity to ‘love unconditionally…and practice being comfortable with…[the] uncomfortable.’ A simply told, moving memoir.”
—Kirkus Reviews

“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 PatchettNew 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 ShieldsNew 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 RobertsGood 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 Assocation 

“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

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

“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 Inhelps bring focus to that need.”
—William Shatner, Actor

"In Where the Light Gets In, Kimberly Williams-Paisley shares the brutal emotional toll that dementia takes on a family, bravely revealing the denial, the missteps, the losses, the grief. Thankfully, she also shares the lessons--how to get comfortable being uncomfortable, how to connect with her mother where she is, how to love unconditionally. Intimate, honest, and beautifully written, this book will be a tremendous resource for anyone affected by dementia."
—Lisa GenovaNew York Times bestselling author of Still Alice

"Kimberly Williams-Paisley’s honest and heart-wrenching memoir draws a stark picture of the devastation of dementia on a family and captures the sense of injustice when the parent/child role is reversed far too young. Kimberly shares her story to honor her mother, but she galvanizes us to find a cure for a disease that slowly erases the ones we love most."
—Lee Woodruff, journalist and New York Times bestselling coauthor of In An Instant

Excerpt

Chapter

1

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.

“Shit! Shit! Shit in a bucket!”

The car swerved, turned, and slid between the pillars. A layer of snow on our driveway crunched under the tires, and then we were in our garage, safe.

There was a silence, broken a few moments later by tentative laughter.

“What about a bucket?” I snickered.

“Sorry,” Mom said, a little embarrassed. “That was just something your grandfather used to say.”

A miracle. I thanked the star.

For one of the first times in my life, my mom had become someone else right before my eyes. I was both startled and intrigued. Who was this mother of mine?

I’ve asked myself that question many times since she was diagnosed with primary progressive aphasia, a rare form of dementia, in 2005 at the age of sixty-two. She has since become someone I barely recognize.

I miss her—the mom from long ago, before any of this started.

As I write this, I’m looking at two black-and-white photos taken on my wedding day more than thirteen years ago. The separate shots of Mom and me are nestled artfully together under clear, clean glass and a bright white beveled mat.

After Brad had kissed me, a gospel choir scattered secretly throughout the congregation stood up and belted out “Oh Happy Day.” Brad and I paraded back up the aisle and then snuck into a balcony to watch our dressed-down, rowdy guests. They were cheering, waving, singing “Amazing Grace” and a raucous “Praise God.”

And there was Mom in the middle of everyone. She seemed euphoric.

Later I arranged the two separate photos of that moment in the same black frame. She is in the lower corner, with her arms held high and rigid. Her one visible eye conveys a mixture of ecstasy and perhaps fear about what was beginning to happen to her. Above her picture is one of me. I’m looking up, laughing. I am lifted by the love of my family, especially my mother.

Below the photos is a quote from something I’d told an interviewer at a magazine a few years earlier for their Mother’s Day issue. I copied it down in black ink: She’s still that voice in my head that says, “Go for it! You can do it! Even if things are scary or difficult or you’ve never done them before, do them anyway!”

I put this collage together for Mom after my wedding as a sort of peace offering. Her bouts of anger had become more frequent recently, and I was hoping to put all of the strains of the engagement and wedding behind us. I think I knew she needed encouragement. And I wanted her to know I was grateful for all that she’d given me up to that point in my life. It was true: my mother had always urged my brother and sister and me to “go for it,” beginning in my earliest years.

When I was a child, we often went to Cape Cod in September to visit my grandmother after Grandpa died. Most beachgoers were content to sit on their towels at the end of the tourist season. But Mom wouldn’t stand for that.

Despite the first cool whisperings of winter in the breeze or a cloudy sky, she would gather Jay, Ash, and me up off the sand at Old Silver Beach, and we’d hold hands and charge toward the water, past the lounging local residents.

“Run right into the waves!” she’d instruct. “It’ll be great!” Mom knew that if we waded in tentatively, we would never get wet above the knees.

I was the oldest, the parent pleaser and rule follower. Back then, it was up to me to set a good example for Jay, three years my junior, and Ash, the youngest of the family. Mom’s enthusiasm was an invitation we couldn’t reject.

“We’ll do it together!” she would yell. With goose bumps on our tanned skin, we raced, shrieking, into the frothy waters of Buzzards Bay, let go of each other as we fell into the waves, and bobbed back up. She was right. It was great.

My mother was teaching us not to shy away in the face of a challenge. Not to shrink from what was uncomfortable.

One day in the future, when scientists study her donated brain, they’ll find signs of her disease. They might see plaque—waste material that looks like dust balls under the microscope. They may zoom inside the cells, searching for tangles resembling a jumble of spaghetti. Her brain overall will most certainly be smaller than normal, and some of the tissue might be slightly yellow or green instead of the usual gray.

But they won’t be able to detect my mother’s courage. They won’t see her stubbornness, or humor, or infectious passion for life. They won’t be able to measure how much she loved her family or what kind of parent she was.

My mother is not her disease.

She was the one who got me to appreciate the excitement of thunderstorms. When hurricanes threatened, while many residents were nailing plywood over their windows, Mom was driving us to the beach to see the wild wind churn the waves. It was her voice in my head that told me to go to the cattle-call audition for Father of the Bride when part of me wanted to stay in my safe dorm room. Hers was the whisper in my heart that urged me to say yes to the adventure of flying upside down in a biplane in the middle of Africa when I was twenty-four.

Seek out adventures, she told us. Come back with stories.

In the meantime, she didn’t tolerate whining. It wasn’t in her genetic makeup. Her British grandfather survived four and a half years in a Japanese prison camp in Hong Kong but didn’t talk about it after he came home. Her stockbroker father, George Payne, never outwardly despaired when markets plummeted. “It’s only money,” he would say.

Once I saw my grandmother Betty pull a dish out of a hot oven with her bare hands, and she didn’t even flinch. My mother’s family history was a tale of determination and endurance, and it influenced the way she raised us—including the way she reacted when anyone in the family got sick. When I was about ten, Mom gave me an eye roll when she overheard me on the phone with my father describing in detail the way the cut on my right palm felt after I’d fallen and gashed it on a rock.

“Pain, sharp pain, pain, sharp pain,” I said, milking the attention.

“Oh, brother,” Mom said. “You’re fine.” No big deal. Get back out there. It healed, and she was right. I was fine, even though I still have quite a scar.

Mom launched me at an early age toward escapades and quests, some braver than she’d ever attempted. And her deep, no-nonsense love helped keep my feet rooted to the ground.

But as Mom’s illness began to overtake her, dementia distorted her view of the world and erupted as extreme sadness, rage, and fear. Gradually I lost sight of the mother I used to know. I was shocked by the woman who seemed more and more alien.

My family made many missteps. I regret the things I didn’t have the nerve to discuss out loud. I wish I hadn’t listened to Mom’s misguided requests for secrecy and autonomy rather than to rational, practical advice from people outside the family who could have offered help to both of my parents. I’m sad that I didn’t keep a closer watch on my father, my mother’s primary caregiver. I’m sorry I had to be a long-distance caregiver, caught between tending my mom and mothering my own children. I hate that my sister wound up carrying so much of the burden.

Eventually, though, surprising blessings began to emerge. As I begin this story of my mother, I realize that our lives today are no longer black and white. I see Mom and me in a different frame now. I believe we’re healed in ways we couldn’t have foreseen.

The woman I visit today can no longer act as a mother or wife. Her single room and bath in her new home is on the fifth and highest floor, the last stop for residents requiring advanced “memory care.” She sits in a wheelchair much of the time and rarely speaks. Her head droops to the right. Her expression is vacant. She sleeps often.

But her caregivers love her. They say she is impish. And empathetic—she senses whether the people around her are happy or having a hard day. She makes a face if someone is being inappropriate, and she often laughs at the sound of music. She occasionally still seems to know some things. I continue to learn from her, in profound ways.

Today she’s near the counter where nurse assistants dish out a hot lunch. Her wheelchair faces a bank of curtainless windows with a panoramic view of lush treetops. I don’t know how much of her own story, or mine, she remembers now.

She sucks Fresca or cranberry juice mixed with water through a straw when I put it to her lips. I offer her minestrone soup, and she clamps down on the spoon and won’t let it go. I wait. She releases and sighs, closing her eyes.

I wipe a smear of soup off her chin with a napkin. Her eyes open and look at me. Connection! She shakes her tilted head slightly.

“Why?” she asks. It is a question she has asked before. It is one I ask a lot. Why? Why is this happening to you, Mom?

I imagine what she’s thinking. Why can’t I have an apple martini? Why are you staring at me? Why am I in this place with all these strange people?

“I don’t know,” I answer, and wait. She sighs.

“Shit,” she says.

“Shit in a bucket,” I answer. And she laughs, mouth open wide and eyes sparkling. For an instant there she is again.

Chapter

2

I don’t know if Linda Payne Williams ever thought she’d be a mother. The year I was conceived, my parents were living out their dreams as foreign correspondents. They had quit solid jobs with steady pay at Newsday, given up a new apartment near a beach in suburban Long Island, and said goodbye to family and friends in New York. Now, in 1970, they were freelance writers in a walk-up flat in London, feeding shillings into a stand-alone heater and cuddling to stay warm. Dad called my mother “Scout” because of her brave pioneer spirit. A single table was their office. They wore down the only typewriter ribbon they’d brought to England and reused sheets of paper by filling up every available blank space.

The first word about me appears on one of those pages, above my dad’s handwritten notes for an article. Mom grabbed it and scribbled her breaking news in the corner as she received the results over the phone from the pregnancy test: “Positive.”

Even after they knew she was expecting, they accepted an assignment from Newsday to write a feature story on the simmering conflict in Northern Ireland between Protestants and Catholics.

Dad went on foot patrol through dark Belfast streets alongside British troops searching deserted houses for crude bomb factories. He wore a flak jacket lent to him to protect him from explosion fragments, secretly hoping he’d have a Hemingway moment where he’d have to dive for cover or duck a bullet, all for the sake of the story. In a gesture toward more-responsible parenting, Mom—who usually would have accompanied him—reluctantly chose to stay at the hotel.

Dad survived without a scratch, and the next day they flew back to the States. It would be the last time either of my parents would take on a dangerous assignment, or even drive above the speed limit. Planned or not, raising a family soon became their center-ring adventure.

Mom delivered me three weeks early on September 14, 1971. Her water broke, and four hours later she was a mother. According to her tattered but elaborate record of my every moment, I weighed four pounds, seven and a half ounces and lived in an incubator for a day or so, until I was healthy enough to go home.

My head was hardly bigger than a tennis ball, my body the size of a kitten’s. One of Mom’s friends met me for the first time when my mother was cleaning up their apartment in Bronxville. She’d wrapped me in a long blanket trailing off toward the ground. The visitor was terrified that the vacuum cleaner might suck up the end of the blanket with tiny me in it.

“She’s fine,” Mom insisted.

I thrived, and the family grew. Jay was born in 1974, and we moved from an apartment into a small house. Then Ashley surprised everyone in 1978. Mom and Dad bought a bigger house, and my father churned out articles from his home office, while my mother officially stopped working to take care of us.

Dad’s freelance sales were barely enough to support a wife and three kids in the ’70s. For years we bought groceries on sale and got our shoes two sizes too big so we could grow into them. The house became chaotic. Stacks of old newspapers, letters, and unfinished to-do lists piled up on the floors and in corners, enough to become end tables, topped off with a tissue box or an old cup of coffee.

We all tried to pitch in at home, doing dishes and laundry and trying to keep track of our pets—hamsters, fish, a parakeet, guinea pig, mice, and a couple of snakes over the years. But my parents could take only so much of this “help” from their three small children.