Where the Light Gets In

by Kimberly Williams-Paisley

  My parents were preparing to perform a musical finale. Dad’s expression was mock-serious, but it was hard not to smile at his half of the orchestra. It was a kazoo, crafted out of a long leafy twig from our woods. He had slit open one end of this instrument and jammed a tiny paper reed into the crack. Mom stood next to him. She was the other half of the ensemble, the entire percussion and giggles section, holding a pair of stew-pot lids.

  “We will now perform for you the final movement of Beethoven’s Ninth Symphony in D Minor,” Dad announced, and cleared his throat.

  In its original form, the movement was the choral climax of one of the most popular classical pieces in the world, with words from Friedrich Schiller’s poem “Ode to Joy.” Recently I looked up the English translation of the words, none of which were sung in my parents’ truncated rendition. What went unspoken strikes me as poignant now.

  Joy is the name of the strong spring

  in eternal nature…

  Joy drives the wheels in the great clock of worlds…

  The happiness we felt, possibly romanticized in my memory, still feeds me years later. The evening was one of the last times we’d all be together. In the next couple of years, our larger family would change dramatically, in predictable ways and also in unexpected ones. But in that moment, huddled in our country kitchen, all was well. We snickered as Dad raised the twig to his lips and blew. The kazoo squealed in time and on pitch (as far as I knew). At the end of every couple of bars he turned to Mom, who stood next to him expectantly.

  Whoever has won a lovely woman—

  Add in his jubilation!

  Each time she got the nod from him, she raised her metal pot lids and banged them together. Kids jumped. Mom giggled.

  Beethoven’s Ninth has never been played as it was in the abridged version my parents performed that night. Dad ended on a high triumphant squeak, followed by Mom’s final clang.

  Close the holy circle tighter

  Swear by this golden vine:

  Remain true to the vows

  A serene departing hour!

  —

  Days later, rain washed away Betty Beach, and over the summer the water seeped out of the pond. We spent the next two years rebuilding it. We celebrated Festivus twice more after that weekend, but none would ever be as fun as the first.

  We were a cheery crew during our irreverent celebration. My heart ached when the family dispersed and we reverted to our roles as long-distance caregivers. But we were grateful for the memories of the days together, especially the realization that my mother had become more accepting of her own shortcomings.

  In the months that followed, she allowed my dad to print up a list of guidelines to help friends talk with her. The style resonated with the cheeky tone of Festivus, but the message drew on serious advice from the Burke Rehabilitation Center in White Plains, New York, where she was receiving speech therapy.

  Dear smart, funny, sensitive, and supportive friends,

  Conversation is the best speech therapy. Burke views talking with Linda as a way to show what she knows, thinks, and feels. Conversation can reveal and acknowledge her competence, Burke says. Thinking about talking in this way has helped her. She is far more fluent and confident than she was before we got serious about Burke work.

  Good things to do:

  Provide extra time for Linda to process what you are saying and extra time to respond.

  Keep explanations short and simple, but also adult. Compound sentences (strings of ideas connected with conjunctions) compound communication difficulties and make it less likely she’ll understand and make you appear boring and are not a great thing to do and sometimes make anybody forget what the beginning of the sentence was about.

  Keep your voice at a normal volume. This may be impossible for this group.

  Use gestures with the ease but not the extravagance of an Italian.

  Not-so-good things to do:

  Don’t finish Linda’s sentences or supply the word she’s seeking unless she asks, often nonverbally by punching you, for help.

  Don’t interrupt. It can cause her to lose her place.

  Don’t be afraid of silences.

  Don’t limit conversation to activities of daily living, although sex is fair game although daily sex is but a dream and not necessarily her dream.

  —

  Ash flew to Mom and Dad in New York every month or two from Los Angeles to cook meals, pick up around the house, or take Mom to speech therapy appointments. These occasional visits were frustrating for her. She noticed that Dad wasn’t delegating enough of the caregiving chores to friends or hired help. She saw how much he was taking care of our mother, and she was haunted by that lunch at La Bonne Soupe and Mom’s plea: I don’t ever want Daddy to take care of me. Ashley told my dad about the conversation, but because my mother hadn’t written her wishes down, and because she had only said it to my sister, my father dismissed it. He didn’t understand what his wife might have meant. She didn’t want to be a burden? But what did she actually want me to do?

  He never had the courage to ask her. And our mother’s perspective had changed. She didn’t want anyone helping her except our father. Mom had forgotten the promise she’d asked Ash to keep, and didn’t realize how much Dad was doing for her. In fact, he seemed to take great pride in being the only one she wanted help from.

  In between visits, my brother and I tried to reach out over the miles separating us from New York. Jay created a book with pictures—of people, places, and things—our mother could point to when she couldn’t retrieve a word. He sent it off but heard nothing back. I called home often. The sharpest pain for me was hearing Dad’s voice straining to sound happy while Mom listened. All of us were living in shadows and half-truths about what was happening.

  Then my father and I stumbled into a project that allowed us to connect outside of and apart from Mom’s illness. We began writing a young adult novel about a secret army of intelligent farm animals led by a snake, patterned after the villain of Eden. The story was Dad’s idea, and he asked me to develop it with him. I savored the opportunity. We found a literary agent in New York, and that allowed my father to classify the project as serious employment, requiring him to take time away from caregiving. For the first time in months, he and I could talk privately. Initially, at least, Mom left him alone during what we thought of as “office hours.”

  We wrote, edited, expanded, and revised more than thirty drafts of the book in 2008 alone. The fiction was less important for me than the opportunity to ask him about his real-life trials at home, though he never wanted to discuss them for long.

  “I have to think of taking care of your mother as my new job,” he told me. “If I do that, it’s really not the worst I’ve ever had. I enjoy it.” Even when he was trying to be honest with me, he was determined to sound sunny in the middle of a storm. The truth was, he told me only later, the job was so hard for him at times that he felt uncomfortable asking anyone else to take it on.

  He tried to enlist her help in making dinners. She was earnest, stubborn, and sensitive—her disease hadn’t robbed her of these endearing traits—and Dad had to coach her casually without offending her pride.

  “What’s the measuring cup doing next to the beans?” she asked.

  “I forgot to tell you. All you have to do is fill it all the way up.”

  “Okay, but what do I do after I put them in the cup?”

  He also tried to set up the house to give her more autonomous control over her life. He wrote out operating instructions for how to make coffee and how to push the auto-dial buttons on their landline. He stuck a Post-it note saying, “Press here” on the microwave keypad with an arrow pointing to “ADD 30 SEC” so she could heat up milk by herself.

  But the note confused my mother.

  “This?” she’d say, pressing the yellow slip instead of the shortcut key.

  Dad couldn’t imagine that anyone else would know Mom well enough to keep her from being hurt or even more
discouraged than the disease already had made her. And that meant he was anchored to caregiving with little chance of arranging time off with friends, even though several of them and his therapist encouraged him, as my siblings and I did, to take better care of himself.

  The range of communication between my parents had narrowed. His therapist suggested it was as if an entire piano keyboard had shrunk down to just four notes. My father thought he was the only one who knew how to play them.

  The truth was that nobody could stop the onslaught of her disease. In speech therapy sessions at Burke, Mom was having trouble following even simple directions: “Make a fist and open your mouth.” Or “Squeeze my hand and look up at the ceiling.” Her therapist provided homework, like practice with writing numerals. One day my mother stared at the numbers she’d written, one to five.

  “I don’t get what they mean,” she told my father. “I’m not sure what we’re doing. I know this is three, this is four, but why is that?”

  Her determination broke my heart. I tried to imagine what it must have felt like to be her. It was as if, for no apparent reason, the puzzle pieces that always used to fit together didn’t anymore. Even the purpose of numbers didn’t make sense. She blamed herself for not understanding. She thought that if she could just tough it out, try just a little harder, she could overcome the challenges of her daily life.

  Jay said Mom’s sickness felt like “death by paper cut”—tiny wounds of attrition with every new loss—and that’s how it felt to me, too.

  —

  But there were still reasons to celebrate. At the end of 2008, I got pregnant again. The second time around, it was fun telling my parents. All the fear I’d felt the first time was gone. Brad wrote a sign that said, I’m going to be a big brother and gave it to Huck to hold from his high chair. Then we Skyped with them and asked if they wanted to see their grandchild. When Huck held up the sign, my dad read it to Mom, and they both started cheering. My mother soon switched to screaming, in typical fashion, but she understood what was happening, and was ecstatic. Huck looked confused by her over-the-top reaction but was pleased to have caused such a ruckus.

  This pregnancy flew by. As soon as my belly began to pop out, I coincidentally got offered a role as a guest star in the series finale of one of my favorite shows at the time, David E. Kelley’s Boston Legal.

  I hadn’t been working much since having Huck. I wanted to focus on my family and being a mom, and faced with Brad’s busy schedule, I felt that the time was right to take a break from acting. According to Jim had ended, and I’d started to get picky about taking on other projects. But this part seemed to have been written for me. The character I’d be playing, Hilary, the “wonder girl from Tennessee,” was a lawyer arguing in front of the Supreme Court alongside my two favorite characters on the show, played by phenomenal actors William Shatner and James Spader. And to top it off, the argument in court was about an experimental drug for Alzheimer’s. Wow.

  At first I was concerned my newly bulging tummy would keep me from acting the role. Kelley assured me that it wouldn’t be a problem: Lawyers get pregnant, too. My next challenge was memorizing pages of brilliant dialogue. I’d never had a problem learning lines before, but now I was paranoid.

  Mom’s disease was at the forefront of my mind, though I still hadn’t discussed it publicly. Seeing her struggle to find words made me insecure every time I couldn’t find one myself. Am I showing early signs of PPA? part of me wondered, and probably always will. But my actual condition was what is more commonly referred to among my friends as “mommy brain.” I was pregnant and also caring for a toddler. I was exhausted, distracted, and emotionally drained. The neurons in my head accustomed to memorization were on vacation. My body was being taken over by a demanding little stowaway already stealing protein from my plate.

  I was determined to succeed at this job and hold my own in court. I recited my speeches over and over to myself—before bed, first thing in the morning, in the car, on the plane. I was careful to enunciate words like scrupulous, efficacy, and permissive advertising because I wanted to sound as if they were in my vocabulary every day (yeah, right—in between diaper changes and the sixth round of “The Itsy Bitsy Spider”).

  Hilary was arguing against letting Shatner’s character, Denny Crane, who had Alzheimer’s, take an unapproved drug despite the absence of clinical trials. In a scene in a bar the night before the trial, Crane sits down next to Hilary and says, “I have Alzheimer’s disease.” And Hilary says, “You’re not alone. Over five million Americans do, including my own grandmother.” For the first time, I was helping to raise awareness for the most common form of dementia, while only a small group of people knew my family was facing dementia at home.

  The next day in our staged Supreme Court, I got through the bulk of my monologue with barely a stutter, and relished Spader’s character’s line when he leans over to his partner, Crane, and whispers, “She’s good.” (Career highlight—even if it was just a line in the script.)

  And then Spader’s monologue slayed me. He had always been funny and convincing as he spouted legal jargon. In the final round of the series, his character was arguing on behalf of someone he loved about a subject close to my heart.

  “Denny has a sense of wonder and innocence like a child with all of the world before him,” he says. “He has that capacity for sheer joy that most of us somehow lose along the road to adulthood.

  “I love him with all my heart,” he goes on. “My best friend is dying of an incurable disease that will rob him of himself before it finally robs him of his life.” I choked up and fat tears rolled down my cheek every time we repeated the scene.

  After one of the takes, the director, Bill D’Elia, asked me if I thought my character would really be crying in appreciation of an opposing counsel’s argument when she has actually just lost.

  I said, “This is hard for both sides. My mother actually has dementia. It’s not easy, no matter which way you look at it.” There. I’d said it. To someone I didn’t even know. It just came out. And I didn’t even say, Don’t tell anybody, but…D’Elia listened and didn’t respond. But he didn’t freak out, either. It doesn’t have to be a big deal, I realized. Everybody has stuff they’re dealing with.

  “I’ll do one without crying,” I said. “You can choose.”

  When the episode aired, they used one of the takes with the tears.

  —

  At home, we were busy moving Huck out of the nursery and making room for another child. I decided to use a midwife, and was planning on self-soothing during labor with hypnosis and a birthing tub newly installed at Vanderbilt University Medical Center. This baby’s delivery was going to be au naturel. Mom had opted for drug-free births with all three kids. Why couldn’t I do it for one?

  So of course I wound up having to have a C-section. I wasn’t aware that in the two weeks he spent past his due date in my womb, Jasper had grown to a formidable 9.2 pounds. He was in a bad position for delivery. And his heart rate was dropping too much during contractions. My midwife, Emma, was concerned enough to alert the doctor on call at the hospital. And he was anxious enough to run—perhaps sprint—to our room.

  It alarmed me that he was out of breath when we met him, but Dr. Beyer delivered Jasper with great skill and kindness.

  “He’s smiling at me!” he said when he first saw my son’s face looking up at him. I was behind a big blue screen, so I couldn’t see anything. But Brad watched as the doctor held up the baby. I heard a slight gasp and a few chuckles.

  “He’s huge!” someone said.

  The first thing I noticed was his dimples.

  I asked my parents to wait a whole month before visiting from New York. I needed time to acclimate to juggling two children. And I had even less confidence than last time about Mom’s ability to help, given her decline. Actually, it was more than that. I had real concerns for Jasper’s safety.

  My fears turned out to be warranted. Once my parents arrived, Mom insist
ed on holding him. That was fine with me as long as we were sitting together on the couch. I was always a stickler for hand washing. But when Mom forgot the soap, wet her hands a little, and wiped them on the butt of her pants, I let it slide. Thank goodness Jasper was the second child.

  One day during my parents’ visit, I was getting my hair and makeup done in the living room for an event that evening. Jasper was sleeping in his little Moses basket nearby, and Mom was hanging out with us. Dad had disappeared. I was happy to be allowing him a break. While chatting with Robin, the makeup artist, I hadn’t noticed that Jasper had quietly awakened. So I was startled to see my mother carrying him in her arms.

  Her grip was awkward. Jasper’s blanket was askew, falling off in a long train toward the floor. She could easily have tripped over it. I wanted to hop out of the chair and snatch him away, but I was afraid to offend her. In that moment I made a conscious decision to let her be a grandma, in turn letting myself buy into the fantasy that just for a minute everything was normal.

  Then I saw Jasper’s head slipping out of my mother’s arms as he arched backward. She caught his legs and was able to stop his fall a few inches before he hit the floor. She held him there by his feet, dangling upside down.

  I gasped, jumped out of my chair, and grabbed him.

  “Oh my God!” I exclaimed. I was furious, on the verge of yelling at her.

  Her face flushed with embarrassment, and—to my surprise—anger at me. She was enraged that I had snatched the baby out of her arms, and humiliated by my reaction. It was Jasper’s fault, not mine, she tried to tell me in broken sentences. As she continued rambling, I sensed how upset she was. I fought to stay calm.

  “No big deal,” I said.