Where the Light Gets In

by Kimberly Williams-Paisley

  In a stab at further independence, I opted for fake. I fussed over every decoration and detail. I made sure the smell of warm apple cider greeted them when they knocked on the door.

  Mom was dressed in her typical Christmas “costume,” which had evolved over the years to include more and more elements: the pilly, oversized red sweater, woven from thick cotton yarn with a big Santa face on the front. Dark blue socks splattered with red and green wreaths. Seasonal earrings, big red ornaments that dangled beneath her lobes. A golden sleigh bell tied around her neck with a red silk string.

  Mom cheered as she walked through the door, and handed me a pair of my own red-and-white striped “elf” socks with white fur sewn around the top. She pulled out gifts wrapped in gold paper, finished with green ribbons curled at the ends. I handed her a mug of cider.

  Shortly after they settled in, Dad whispered to me that he and Mom needed to “talk to the kids.” Oh, God, I thought. They hate the tree. They hate everything about Christmas at my home.

  “Brad too?” I asked. I flashed back again to our dramatic California Christmas.

  “Yes, he’s welcome,” Dad said. (Phew.) Jay was working in California and wasn’t scheduled to fly in until the next day. Apparently Dad’s urgency overrode the fact that not all of their children were there.

  Is it my in-laws? While my parents and Brad’s seemed to get along just fine, I worried that maybe Mom and Dad were having some problem with them. Though Brad’s parents, Sandy and Doug, were also somewhere in the house, as well as Neal, Ashley’s future husband, my father didn’t invite any of them to come upstairs to our bedroom. I was concerned our covert meeting would hurt their feelings, but I didn’t say anything.

  Ash and I sat on the red comforter on Brad’s and my queen-sized bed. My mother was on the floor next to my dad. Brad stood.

  Mom’s mood had deflated, and she stared at the carpet like a child who’d just gotten into trouble. Dad took a breath.

  “We’ve been trying for a while now to figure out what’s been going on with your mom,” he said calmly. “In October we got a preliminary diagnosis.”

  I thought it was just anxiety, sleep deprivation. They got a diagnosis? Two months ago? I sensed Dad had been rehearsing this speech.

  My mother glanced at us. You’re not gonna like this, her expression seemed to say. She shook her head and focused back on the floor. My father held her hand.

  “Primary progressive aphasia, or PPA,” he said. “Primary means that a communication problem—aphasia—is the first sign of the disease. Progressive means it’s going to get worse. Many stroke victims experience aphasia, but often it’s treatable. From what we heard, PPA isn’t.”

  This has got to be a mistake, I thought. Explainable. Fixable. Mom looked up at Ash and me again and shook her head more slowly this time, as if she were reading our thoughts. No, she seemed to be saying. It’s not.

  “We can’t begin to know how your mom’s illness will progress. It varies a lot from patient to patient. But doctors predict that it’ll be five to seven years before your mother will need a whole lot of help.”

  He was treading carefully, as though he knew Mom might detonate at any moment with sadness, anger, fear. In her emotional state, it was hard for her to do any of the talking. His speech was measured, unemotional, calm. I tried to absorb all of it, but denial and anger were taking over. They’re wrong. This doesn’t make sense.

  “I want you to know that your mom and I are together in this, and we are closer than ever.” He put his arm around my mother and pulled her to him. He seemed to be saying this more for her benefit than anyone else’s. Ashley’s face was crumpling. Mom choked back a sob, and tears rolled down her face. My sister moved from the bed to Mom’s side. I flashed back to the last few months. They must have been agonizing secretly. I wondered why they hadn’t told us, though it seemed irrelevant in the moment to ask the question out loud. But Dad went on to explain it.

  He said, “Your mother hasn’t been ready to share this information. She asked me to keep it private until she was ready. So that’s why we’re just telling you now. It’s really important to her that you guard her privacy and not talk about this with people outside the family. She doesn’t want sympathy. She doesn’t want you to treat her any differently. She wants you to laugh with her about this as much as possible. And anything you need to say to one of us, you can say to both of us.”

  I stayed seated on the bed, not wanting to move. I felt that if I gave in to their sorrow I would be accepting that this was real, and I wasn’t willing to do that yet. Finally I asked if we could invite Sandy, Doug, and Neal upstairs, and my mother agreed, somewhat reluctantly. We all crowded back into the room, more comfortable in that smaller private space than downstairs in the living room. Dad repeated the diagnosis and the request for discretion.

  In a whole new way, we joined forces as one extended family on our farm. It was the first time my mother had allowed Brad’s parents to see her vulnerable, and their kindness and support were healing.

  “Well, I’ll help you if you help me,” Sandy said. “I can’t keep track of anything these days. Maybe I have dementia, too!” We laughed, grateful for a release. Doug said they’d help my parents in any way they could, and he meant it.

  —

  After Christmas, Jay, Ashley, and I had different ways of dealing with the news. For the most part I stayed true to my mother’s request for the time being, discussing her illness only with Brad and my siblings. I hoped it wasn’t as bad as doctors were saying, and I figured we could deal with it when we needed to. I was much more comfortable distracting myself with work, our new puppy, Holler, and married life.

  Because Jay was now a paramedic firefighter, he looked into Mom’s medical data, trying to boil down her disease into numbers he could understand and use to help her. He also agreed not to talk about it outside the family.

  Ashley dove into research in a way that no one else had the guts to. She wanted to live out the journey we were facing before it happened so that she could be better prepared when it came. Of the three of us, I found out later, she was alone in knowing about the extent of the testing while it was happening. My mother had asked her not to tell the rest of us. So she didn’t.

  Before Mom’s first diagnosis, my sister read an article in the New York Times about people learning to recover their memories. She wrote to a specialist mentioned in the article, Dr. Gary Small at UCLA, and told him our mom’s story, asking if she could see him. Amazingly, the doctor wrote back, agreeing to an appointment. But when Ash called my parents to tell them about it, they were furious. Had she forgotten? She wasn’t supposed to be discussing my mother’s health with anyone. They would not be going to the appointment. Ash called me, upset, and told me she’d “gotten in trouble” with Mom and Dad. I was frustrated and surprised that their reaction had been so strong against seeing another professional. It wasn’t as if she’d told anyone who knew us personally. Mom was missing a potential opportunity to get more help.

  But their reaction didn’t prevent my sister from reading books on Alzheimer’s (there weren’t any on PPA). She joined a Yahoo! PPA support group and read through dozens of member questions, such as “What do I do when my wife tries to bite me?” She found an end-of-life specialist who helped paint a picture of dementia for her and told her that we needed to find out from my mother very specifically what she wanted in terms of care once she could no longer tend to herself.

  “This is going to be brutal,” the woman told my sister. “And your mom needs to think now about things like what she wants her care to be like once she can no longer swallow. Get her exact wishes in writing.”

  Ash was able to convince Mom and Dad to have a phone conversation with the specialist. But they were irritated with what the woman said and how she said it. She didn’t elaborate and didn’t ask many questions. The talk felt like a sermon from someone who thought she knew everything, and my parents didn’t want to hear it. They didn’t want to
discuss end-of-life decisions. They had a different focus: taking the advice that Dr. Nealon had given them just before they left her office on the day of the diagnosis. “Enjoy each other while you can,” she’d said. It wasn’t enough, Ashley knew, but again she had to back off.

  It’s possible that despite these rejections, Mom learned to see my sister as her closest ally. Ashley alone—not my father—knew something about my mother’s wishes about her care down the road. One day during the testing, my sister met Mom for lunch at La Bonne Soupe, an unpretentious New York bistro that served foods my mother loved: freshly baked bread and homemade soups. They finished the meal. Ash asked how it was going, and reluctantly my mother told her: not well. They sobbed.

  Then Mom reached across the table and gripped my sister’s hands.

  “I don’t ever want Daddy to take care of me,” my mother cried. “Please. Please don’t let that happen.”

  “I won’t,” Ash said.

  —

  What my father hadn’t revealed to any of us at the farm over Christmas was that after they’d gotten the bad news in New York, they’d driven home to Rye that sunny day without saying a word, and they’d remained almost speechless as they went upstairs to their bedroom and lay down.

  “Scout,” he said eventually, “we’ll get all the help we need so you can stay in this house. You won’t ever have to leave home.”

  We were all making promises we would never be able to keep.

  That spring, I discovered I was pregnant. And one of my first thoughts was Oh, crap, how’s Mom gonna react to this one?

  Brad and I sat alone at the back of his tour bus in the parking lot of a fair somewhere in the middle of the country. He had about three hours until showtime. We stared for two of those hours at the stick from a cheap pregnancy test. It had been hard enough to buy it secretly in a grocery store ten minutes away. Now two little pink lines confronted us, one faint, the other bright. They had to be a mistake. But the more we reread the instructions, Googled images of positive test results, and gawked at the accusatory stripes, the more the news sank in. This was happening—unplanned, unexpected. I guess it runs in the family.

  How could it be? I’d been in Atlanta shooting the film We Are Marshall, and we hadn’t even seen each—

  Oh, wait. There was that one weekend I made that quick trip home. Whoops.

  We stared at each other, disbelieving. We pledged to get more tests in the morning to confirm. There was some measure of excitement, since we knew we wanted to have kids one day. But we also felt overwhelmed, realizing that our lives had just veered in a whole new direction.

  I couldn’t suppress the feeling, no matter how ridiculous, that I was going to get in trouble with my parents. Mom would reject Brad again, or get upset with me for interrupting my career. She might tell me I’ve ruined my life, I thought. I braced myself for what I imagined might be a showdown.

  It would unfold eight weeks into the pregnancy at Ashley’s apartment on the West Side of Manhattan, where she was acting in a play. Waiting for Mom and Dad to arrive, Ash and I poured milk into champagne glasses and practiced how I would break the news. My newly enlarged pregnancy boobs hurt. I felt nauseated and fatigued. So when my parents arrived, I let Brad do all the talking, via Skype, from somewhere else on the road.

  They sat, squinting at the laptop screen, straining to hear. It took a few seconds for them to understand.

  “We’re gonna have a baby,” Brad repeated.

  They pushed back from the screen and both stood up, looking to me. Dad’s mouth opened wide; Mom covered her face with her hands. Their eyes were wet with tears and laughter. They were ecstatic.

  Relief!

  New life was what we all needed to shift our focus from the other new life—the one we didn’t want to imagine or embrace—that we were facing with Mom.

  —

  We were still denying the grim projections about her disease months later when we met in Chicago to get a second opinion.

  My belly was just starting to protrude that October. Morning sickness had passed. The overwhelming smell of cocoa from the Blommer chocolate factory swirled around us as Jay, Ash, and I walked with our mother and father together to a specialist’s office. It was a good omen. When we were kids, my father had made up stories during long road trips or at bedtime. We starred in all his tales, and whatever else they were about—kangaroos, bandits, motorcycles—each ended the same way: “…and they had freshly baked chocolate chip cookies and hot chocolate, and that was the end.” Chocolate in any form was comforting evidence that everything turned out all right. Now we hoped that Dr. M.-Marsel Mesulam, the world’s expert on primary progressive aphasia, would make it so.

  A year had passed since Mom’s first diagnosis. Ashley had stumbled on Dr. Mesulam’s name when she read that he was the first to recognize PPA as a dementia separate from Alzheimer’s disease (AD). He was director of the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern’s Feinberg School of Medicine. We felt lucky to have gotten an appointment with him, and grateful that at least the family could be together for a rare reunion.

  Few people outside the five of us knew that Mom was in trouble. At home, Dad helped hide her symptoms. He often edited her reports and letters for her job at the Fox Foundation. When she needed help in social settings, she signaled him with a worried glance or a touch on his arm. All of us had learned to patch up awkward silences with small talk during conversations. We knew it was unrealistic to believe that no one outside the inner circle noticed how Mom hesitated when she talked or made mistakes when she wrote. We hoped that the charade might end with this visit.

  But our expectations were higher than that. Maybe her New York doctors had been wrong. Or if they were right, perhaps doctors here would tell us about a breakthrough—a pill, or maybe the news that researchers were on the verge of a major discovery.

  We were giddy when we arrived at our hotel on the evening before the appointment. Because we talked about everything except why we were there, it felt like a vacation. We ordered pizza and beer, lounged on the double beds in our parents’ room, and watched Little Miss Sunshine. I lay on my back and let Jay and Dad serenade my growing baby in two-part harmony. My mother—grandma-in-waiting—seemed surprisingly at ease.

  But the next morning, our brief holiday was over. In the elevator to the doctor’s office, Ash and I forced a joke or two. Mom was silent. My father and brother were stoic. A few older couples sat in the small waiting room. They looked bored. Had they been there many times before? Were they there for the same reason? Are you giving us a glimpse of our future? We studied them. Are we going to be friends? We never saw them again.

  Dr. Mesulam invited Mom into his windowless office, where she and Dad sat down and the rest of us crowded in around them. He had a neatly trimmed grayish beard and was wearing a suit and tie, making him look professorial and somber. We had a lot of questions, but he wasn’t ready to answer them.

  “I’d like to evaluate Linda alone before we talk further,” he said. In other words, the rest of us were not invited.

  “See you in a minute,” we said, or something generic like that. She looked small and scared as she sat there, trying to smile for us. We waved and gave her a thumbs-up. I hated to leave her alone.

  But back in the waiting room, we exhaled and got real with each other. We’d been stifling our feelings around Mom. For the first time together away from her, we began checking each other for an emotional pulse. We focused on our father. None of us had been able to talk with him alone, in person or on the phone, in what felt like months.

  “How are you?” I asked.

  Dad knew we were well beyond small talk. He spoke rapidly in a whisper.

  “I’m tired,” he said. “Your mom is really challenged at work. We fight a lot more at home. She wants to do everything herself, but she just can’t anymore. I want her to stop driving, but she’s stubborn, and I don’t know how to get the keys away from her.”


  We agreed that we needed to check in more often, but it was almost impossible. Increasingly, Mom insisted on being in on every phone call from Dad. Talking with us behind her back felt to my father like a betrayal, undermining the trust between them.

  There was no time to challenge him. What seemed like seconds later, we were called back to Dr. Mesulam’s office. Someone had supplied enough chairs for all of us this time. Mom looked despondent. Dad didn’t dare hold her hand, aware that she was trying not to cry for fear she’d look weak.

  “I have confirmed the diagnosis,” Dr. Mesulam said.

  He went on to tell us everything we didn’t want to hear.

  Like the doctors in New York—he had studied their reports—he’d based his conclusion on the fact that Mom’s difficulties had really begun with speaking and writing, hallmarks of aphasia. PPA first attacked the part of her brain behind her forehead. This frontotemporal area is primarily responsible for language. Her memory was healthy. That alone set her apart from people with AD, whose earliest symptom is usually forgetfulness.

  Most people diagnosed with AD are over sixty-five. The first symptoms of frontotemporal dementia (FTD) often become apparent in fifty- or sixty-year-olds, making the disease relatively more common among younger people (see the Resources section at the back of this book for more recent information). Dr. Mesulam told us that PPA often seems to affect women in their sixties, like my mother. He didn’t know why. He sounded more certain that she would soon lose almost all of her ability to speak.

  “When?” we asked.

  “Within a few years.”

  Mom said nothing, didn’t sigh or make a sound as he continued. I sat behind her and couldn’t see her face.

  As the disease progressed, he told us, she would need help going to the bathroom, showering, dressing, and eating. We would see behavioral changes. And most likely dementia would spread throughout her brain. Eventually the symptoms would resemble the last stage of AD. We learned later that this meant she would probably disengage from her environment, rarely say a word, and eventually lose control of movement and the ability to swallow, among other things. We waited for a shred of good news. But there was none. The expert in front of us made it clear: there was no known cure or even treatment for PPA.