Where the Light Gets In

by Kimberly Williams-Paisley

  She answered without hesitating.

  “I love it!” she said.

  Miraculously, in that moment it seemed as if she meant it. Was it as easy as that? I needed to believe so.

  I noticed I’d started talking about my mother in the past tense.

  “My mom loved lobster,” I told someone over dinner at a seafood restaurant. “No, she didn’t die,” I clarified. Old Mom just wasn’t there anymore.

  My dad disagreed that she wasn’t present. He told my mother’s psychiatrist, Dr. B., what he guessed was on her mind: I want to go home or My family has abandoned me or even I love it here.

  The doctor didn’t think so. “Nothing like normal thinking is going on,” he said. “She’s all instinct.”

  Dad argued that he still saw flashes of her personality.

  “Could be,” Dr. B. said. “But they’re probably coming from some lower part of her brain.” Old memories, even old strategies that made people laugh—the equivalent of tricks or involuntary reactions.

  I took what the doctor said to heart, because I saw it. Though the adjustment overall had been easier than we’d thought it would be, during her first spring there she scratched and knocked down a woman who was one of the few residents who also had primary progressive aphasia. My mother attacked the staff, too, more than once. Dr. B. scrambled to assemble a new mix of medications strong enough to blunt her aggression but gentle enough to allow her to stay awake and as active as possible. The heavier meds put her at great risk for falls and made her head droop forward like a dying flower. The loss of brain function was also weakening her muscle control.

  The possibility that she might still have normal thoughts and fears that were hidden from us, that she might be feeling the pain and horror of her experience or understand what was happening to her, was unbearable. I preferred accepting the loss and trying to move forward. But to do that I needed to mourn, and I was having trouble figuring out how while she was still alive. I was in a holding pattern of confused grief.

  The doctor guessed that, based on averages, she had two years to live, though no one could know for sure. Two more years. It felt like an eternity.

  Visits to see her every couple of months or so were hard for me. I couldn’t tell if she recognized me anymore or not. She’d not said my name since that first visit. I was relieved that she was largely someone else’s responsibility now. But I still hated seeing her the way she was. From my perspective, the fifth floor was full of lost souls—angry and sad people trapped together with no hope of escaping except through death. It was bleak.

  Yet I had to do it. She was—is, I had to remind myself—my mom, even if she didn’t seem anything like it.

  —

  I brought Huck with me during Labor Day weekend, fearing that he might be devastated by the visit. That it would be heartbreaking for him to see his grandmother in the state she’d be in, that he wouldn’t know what to make of the other residents. But he was unfazed when I tried to warn him. He was just excited to see her. He picked out his outfit by himself: an orange long-sleeved plaid shirt that buttoned down the front and a peach-and-blue striped clip-on tie.

  “I want to look fancy for Nana,” he said. He spiked up his hair in front with gel.

  My dad had moved quite a bit of my mother’s things out of the house in the months she’d been gone. Each time I came home, there was less of her there, but still I searched. I hoped to find something I hadn’t seen before. A memory I hadn’t revisited. A sign that she was still around. This time I looked under the bed. Had she left something there? No.

  But the little round M. A. Hadley dish was still on the table in the guest room, where she’d put it years before. A very Happy Easter to you circled the edge in blue brushstrokes, surrounding a bunny with pink ears and mouth. It wasn’t Easter, but the pottery had been on that table year-round for at least six years, quirky and warm, comforting and familiar. Mom had loved it and wanted guests to see it. There she is, I thought.

  Her green canvas hat still hung on a hook by the back door. She used to wear it to protect her face outside. Dad hadn’t needed to take it to her because she was rarely in the sun anymore.

  I looked for a sign of her in the upstairs closet. It was still full of her things. Her faded Lanz of Salzburg nightgown, with the pattern of tiny red hearts and blue flowers, dangled down on the inside of the door. Had she hung it there? It still smelled like her. I took it off the hook and put it in my suitcase to hang in my own closet at home (where it still is now).

  A yellow Post-it note she had left for my dad years before, when she could write, speak, and think, was still taped to the wall at the bottom of the stairs. I’d noticed it every time I was there.

  I love you, it said in Mom’s bold hand, with a smiley face.

  Dad told me he explored the house, too, and clung to odd mementos. On the back of a shelf in the pantry, he stored one of the last grocery items she’d bought. It was mug cake mix in a small box. Stir water into it. Pour it into two coffee cups and microwave for one minute and twenty seconds. The box promised a pair of miniature chocolate cakes with glistening crusts. Mom must have figured that it would be easy for her to make the his-and-hers dessert she’d found for them. The mix had expired a year before, but Dad couldn’t bring himself to throw it away.

  —

  My father drove Huck and me to her place.

  My son smoothed his tie as we walked into the common area. Mom was sitting in a chair in front of the fireplace. Her head was down, so she didn’t notice when we arrived. I knelt and looked up at her face.

  “Hi, Mom,” I said. “I brought Huck.”

  “Ooohhh!” she said, lifting her head as much as she could. She seemed delighted. Huck put his arms around her.

  “Hi!” she said.

  “Hi, Nana,” he said, smiling. Someone on the other side of the room wailed. I winked at Huck. People act differently in these places, I’d told him earlier. It’s okay. He smiled at me and turned back to my mom.

  “Can we see your room?” he asked.

  Her body language signaled an invitation. We walked with her down the hall and through her door. Huck loved the bed, which moved with the touch of a button. We helped her stretch out on top, and they laughed together as Huck made it go up and down, up and down.

  When we said goodbye, she started to get sad, but Edward appeared with a song to distract her. Huck seemed content as we drove home. I was surprised and relieved that it hadn’t been as traumatic for him as it usually was for me.

  We came back a couple of months later with Jasper and Brad, and gained an extra family member. Tutti, another resident, usually seemed to think she was part of the kitchen staff. She was genuinely helpful, picking up plates and wiping off tables. As soon as she saw our three-year-old, she fell in love with him.

  “Aren’t you a cute little thing,” she said to Jasper, reaching out and rubbing his cheek. He was polite. Tutti started following us around, “helping” us keep an eye on him.

  “Be careful with that, honey,” she said when Jasper picked up a rubber ball. “Come here. Come over here.” His tolerance was beginning to fray. We retreated to Mom’s room, but Tutti joined us.

  When I was growing up, Mom was jealous of our time together. She didn’t appreciate it when friends dropped by uninvited. But now she seemed blasé about letting Tutti sit on her bed next to her grandchildren during this precious visit. What the hell? We all rolled with it…until the end of our visit. We said our goodbyes, and Dad punched in the code to exit. Suddenly Tutti lunged at Jasper.

  “Don’t you take my baby!” she screamed. “You can’t take my baby!” She tried to yank him out of Brad’s arms. A staff person appeared immediately and pulled her away. We slipped out the door. Jasper was crying as we stepped into the safety of the lobby.

  “She really liked you,” Brad said, trying to put a positive spin on it.

  “No,” Jasper said. “I think she thought I was hers.”

  —


  My sons bounced back from visits much more quickly than I did. I put off going to see Mom for a while after that, and grieved in short but intense bursts when something unlocked the pain. Like Mom’s lone sock in a basket in the closet, for example. I recognized it because it was bigger than mine, pilly and worn and missing its mate. She was back for an instant and then gone again. I cried on the floor for a minute. Then it passed.

  Another night I heard a song my friend Sandy Lawrence wrote called “When I’m Gone.”

  You’ll wonder why the earth still moves.

  You’ll wonder how you’ll carry on,

  But you’ll be okay on that first day when I’m gone.

  And even though you love me still, you will know where you belong.

  Just give it time. We’ll both be fine, when I’m gone.

  I sobbed so hard I could hardly breathe. I thought about my dad, about how much of his life he’d given to my mother and then lost because of her illness, and about how beautiful and painful it was to see him still hugging and kissing her. I couldn’t help despairing. What was the point? She was gone.

  —

  The following January, something shifted. My onetime co-star William Shatner came to Nashville with his wife, Liz. Brad and I went to see his one-man show, Shatner’s World, at the Tennessee Performing Arts Center.

  The Shatners had been friends for years, even before my Boston Legal appearance, and we loved our time with them. Bill was vibrant, funny, and honest onstage. He spoke at the end of his performance about the power of saying yes to every facet of life—taking every opportunity, meeting every challenge. I was inspired by that idea, and carried it with me as we went backstage to say hello.

  About ten people gathered in Bill’s dressing room to congratulate him. In our group was a woman I’d never met before who was guest-starring on the ABC show Nashville. I’d had a role on the series for a while, though we’d never overlapped there. I asked her how long she’d lived in Tennessee.

  “I came back a couple of years ago to nurse my mother, who had dementia,” she said. She told me she had found a profound spiritual connection with her and had a surprising serenity during the last year of her life. “It was very healing,” she said. Their time together was different from anything she’d experienced with her mother before. She talked about their energetic communication through music and physical touch. Huh, I thought.

  We all went to dinner. I sat next to Liz, who asked how my mom was. I never knew how to answer that question. How is she? Terrible. She’s still alive but not. She isn’t getting better. She doesn’t seem to know us anymore. We’re waiting for her to die.

  I didn’t say any of these things. “She’s fine,” I said. “The same.”

  Liz told me a story about her father, who had passed away seven years previously.

  “About a week before he died,” she said, “my mother called and said, ‘I’m not sure, but it seems like your dad wants to talk to you.’ ” Liz’s father had never been forthcoming with emotion. In fact, she couldn’t remember ever hearing him say he loved her. Her mother put him on the phone, and he started talking.

  It was a little hard for Liz to understand. But it sounded like, “I love you I love you I love you,” over and over and over again. A profound lucidity, perhaps a way of saying goodbye before he died.

  I started crying. I’m missing an opportunity, I thought. I need to love my mother in the innocent way my children do. The empathetic way Mom herself has loved people, sometimes total strangers, her whole life. I need to see her as she is, instead of how I want her to be. Maybe we could find a way to communicate with each other. Maybe then I could let go of the pain. I could be free.

  “Yes, go see her,” Liz said, wiping away my tears. “Go see your mom.”

  I got up and walked to Brad, who was on the other side of the room. I sat down on his lap.

  “I need to go to New York,” I said. He saw my wet cheeks and maybe felt a measure of relief at what seemed to be renewed resolve. I didn’t need to explain it much further. He understood.

  “Okay,” he said.

  “Tomorrow.”

  “Yes.”

  —

  I got on a plane the next day with my brother and my two boys, and we flew north. Something major had shifted in my heart. I felt invigorated, unafraid, open, inspired.

  And for the first time in years, my time with Mom didn’t hurt.

  She was sleeping in a chair, head still bowed, in the living room. Edward was playing “You Are My Sunshine” on his guitar. Gertie sat upright, singing every word in her sweet voice: “You make me happy, when skies are gray!”

  “Come on!” shouted a man at no one in particular from his wheelchair. Huck and Jasper and I giggled at the strangeness of it all. I shook Mom gently.

  “It’s me,” I said. “It’s Kim. A bunch of people are here to see you.” When she saw me, her blue eyes opened and she grinned as though I was one of the best surprises of her life. She wasn’t a threat anymore, and I could let my defenses down. I took in her joy and accepted it for what it was. Mom was living in the moment. Her lack of self-awareness allowed for a unique kind of peace. I could learn from it.

  You are still my teacher.

  We sat like that for a while. I rubbed lotion into her hands. Huck and Jasper grabbed my phone and started making videos with Jay. Dad showed me some music therapy techniques he’d learned from a woman named Debby, the new head of the floor. When my mother cried out, “Bah bah bah bah!” as she did often, he mimicked her—syllables, sound qualities, pitch, and volume.

  “Bah bah bah bah!” came back at her, mixed like a duet with her voice. The echo seemed to soothe her.

  I tried it. It felt silly at first, but I picked it up quickly. As soon as my mother heard herself in my voice, she locked eyes with me. Connection. We get each other.

  The second part of the technique was to bring down the pitch and volume, and end with a long sigh. Often she would follow and calm herself.

  I took a walk with her, fed her, and shared her delight as she rediscovered me every time I left her alone for a moment and then came back. I gave her a big hug when I left.

  “I love you, Mom,” I said. She smiled and sighed. I left feeling light and happy, with a new understanding. I could choose to see our losses differently.

  An acting teacher, Lesly Kahn, once passed along advice attributed to several sources: “Ride the horse in the direction that it’s going.” Instead of wishing for things to be different, choose to embrace the life in front of you. When I let go of my tight grip on expectation, I found I could still have some kind of relationship with my mother. I could share love with her in a beautiful new way.

  When we got back to Tennessee, my sons proudly showed me the movies they had created while Mom and I had been busy rediscovering our relationship. For years I had felt as if I’d been dipping in and out of a familial war zone. Now that we’d survived, Huck and Jasper had decided to make some comically dark film adaptations. Each one is only a few seconds long. Each was shot using the Action Movie app that lets you create explosive special effects in videos on your iPhone. Jay showed them how that day.

  My favorite begins with Mom sitting in the brown comfy chair in her room. She’s wearing her pink velour sweatsuit, and her hair is combed assisted-living style. She has a gap in her front teeth where a cap fell off (it would have been too uncomfortable—and unnecessary—to replace it). Dad is on his knees next to her, smiling. I’m on the other side of her, off camera. We’re feeding her lunch.

  But instantly, incredibly, the mood shifts as a gloved hand, wearing a green rectangular watch, enters the frame. Another gloved hand appears and presses a button on a controller. Clang! Electric sparks fly. My parents don’t notice. The hands disappear. We hear an approaching helicopter. Thrum thrum thrum thrum.

  Dad carries on, scooping up a spoonful of something orange and mushy. Then there is the chopper, just over his head to the left. Dad doesn’t realize it’s
coming right at him! In the middle of Mom’s bedroom! They’re oblivious to the impending disaster. The helicopter is out of control. It’s spinning! It’s gonna crash! Dad holds the spoon up to Mom’s lips. She chews a small bite of sweet potato with her mouth open.

  Boom!

  The bedroom explodes in a fiery ball! The screen goes black.

  (Miraculously, no one is hurt, and life carries on as usual.)

  Blessedly, this video makes me laugh as hard as I used to cry.

  Dad bet Brad a bottle of wine that he could swim the length of our pond in Tennessee. It was warm that June, as usual, and none of us had ever been in the newly clay-lined, bigger two-acre lake just outside our back door. The water was green, and home to the occasional snapping turtle or snake and many bluegill and bass. It was lovely to paddle across, as we had years before during Festivus, or to cast a fishing lure from the shore for the fun of catch and release. But no one had ever had the courage to take a plunge.

  A pair of geese always appeared in March to make a nest on the edge of the water and lay eggs. That summer we watched the three yellow goslings waddling around, learning how to forage. They moved with their parents to the opposite side of the pond when Huck, Jasper, and I joined Dad on the dock in the midafternoon.

  It had been a great visit so far—his first solo trip. My father was rested and happy. He had the energy and patience to relax, chat and play with my boys, and get to know them in ways he couldn’t before as a hands-on caregiver.

  We watched him climb down the ladder from the dock.

  “Oh, it’s warm!” Dad said as he sank up to his neck. “It’s beautiful!” He adjusted his goggles. We held our breath. Would something bite him? Would he get the rare brain-eating amoeba that the media claimed was threatening swimmers in the South in warmer weather? He was unafraid.

  “I do this for humanity!” my father cried.

  “Really?” I asked.

  “No, I do this for the wine,” he joked. “If I start to veer off course, give me a shout.” And he was off. We watched his calm freestyle. Stroke, stroke, stroke, breathe. Within minutes he’d done it—turned that murky pond into a whole new summer joy. We cheered.