Months after that, during another visit, Huck grabbed a picture book called Snowmen at Christmas off the shelf in his bedroom. He handed it to Mom, who was sitting on the floor.
“Nana, will you read this to me?” he asked. She looked to me in a panic, reluctant to admit to him that she couldn’t anymore. Help. I’m in over my head.
But before I could say anything, Huck picked up on her discomfort.
“You can just make up a story from the pictures instead of reading,” he told her.
“Oh! Okay!” she said. “Uh…” She hesitated again, holding the open book in her lap. Huck snuggled into the crook of her arm, patient, waiting. Then Nana plunged in, doing the only thing she could think of in that moment. She started tapping him on the top of his head and making train noises.
“Choo-choooo!” she said. Tap. Tap. Thump. The book fell off her lap and closed shut on the floor. “Ho!”
Huck caught my eye from beneath his grandmother’s palm. We need to find new ways to have fun with her. I was astonished to see his eyes sparkling. He knew what to do.
“Good job,” he said to her. She beamed.
—
At home in New York, various people took turns staying with Mom overnight so Dad could occasionally get some rest at a Catholic convent for twenty-four to forty-eight hours. In contrast to the chaos and mess at home, the convent rooms, with their cinder-block walls, were clean and small, and the self-imposed silence and peace appealed to him.
But the more other caregivers filled in for my father, the less happy they were to do it again. It was exhausting, hard work, and no one could understand how my dad had been handling so much by himself for so long. Ash hosted Mom in California for several weeklong stays. But my sister got so drained from these visits that she had to stay in bed for days afterward. My mother needed constant entertainment and wasn’t content with being put in front of the television or being sent away for a nap. She had the attention span of a five-year-old but the pride of a matriarch. Though she enjoyed the overnights with friends, with her sister, with Ash, she raged at my father every time he told her he needed to leave again. She got mad at everyone at some point for one reason or another, but Dad got it the most. Often it infuriated her that he couldn’t decipher her scrambled thoughts.
“What about that?” She would point at their television. It was turned off, the flat screen black.
“Do you want the TV on?” he would ask, reaching for the remote.
“No!” she’d yell.
“Something about a program?”
“No, it’s that!” she’d say, still pointing at the screen. Dad likened her mind to a coatroom where all the coats lay in a messy pile on the floor. She was making less and less sense.
And she was having more and more accidents. Bruises, scrapes, and cuts on her arms and legs were starting to mark a trail of injuries. More than once she wound up in the emergency room, where Dad would have to speak for her. She slipped on a wet bathroom floor….She tripped on a crack in a sidewalk….She bumped into a glass door….She has primary progressive aphasia. Have you heard of it?
—
My mother told my father she couldn’t take it anymore—she wanted to leave him. She badgered him and spewed insults at him for no clear reason, until occasionally he broke and raised his voice at her, a rare occurrence for him. She would be contrite for a day or so after, but Dad was depleted. By the end of 2010, the friends-and-family plan was fizzling out. Just trying to keep track of who was willing to step in to do what when was time-consuming.
We urged him to hire someone professional on a regular basis for many hours a week, whether Mom liked it or not. Dad said he wanted to but didn’t know the most practical way of doing it, and felt as if he might be better off continuing to try to juggle his time and Mom’s moods. In his kids’ minds, his judgment was still way off.
It was time for a face-to-face intervention. We needed to take control of the situation. Jay, Ash, and I planned a trip home that winter. We gave my father a heads-up that we were coming to try to convince both of them to get more help, and he agreed to it, as long as we took the lead. Ash talked to an intervention specialist, and we came up with a plan. We would tell our mom that we were worried about Dad’s health, and try to enlist her assistance in getting it for him. This would take the focus off our mother’s limitations and put it onto our father. Still, all of us assumed we’d have to fight her on it.
Coincidentally, because of the way our schedules lined up, I would not be home for Huck’s fourth birthday. I’d never missed his birthday before, and I felt awful about it. I knew he was only four and he probably wouldn’t remember, but I also resented having to miss it. Then I hated myself for feeling resentment. I was torn by guilt over my responsibilities, both as a parent and as a daughter. There was no question that the talk in New York would have a greater impact if my brother and sister and I were all there in person as a unified team. It was where I had to be.
Still, I dreaded the visit. My siblings and I had never before fought to take charge of a Williams family crisis. It had always been Dad’s role, or less frequently Mom’s. I was very uncomfortable usurping his leadership, even though he’d admitted that he couldn’t do everything by himself. The little girl inside me was also scared of my mother—of her unpredictable reactions, of her rage and despair, of the disease that was running our lives.
After Brad and I put the boys to bed the night before I left for the visit, my husband held me as I wept big gut-wrenching tears in bed. He had never seen me cry that hard.
“I’m so sorry,” he said, again and again.
—
But the trip ended up going surprisingly well. Mom was overjoyed that we were all together, which then colored the tone of our confrontation. We had a group session with our father’s therapist, Lynn Evansohn, who was also in on the plan. All three kids each explained how we were worried about him. By the end of the meeting, our mother had miraculously agreed to interview some in-home helpers that afternoon. Later, in our parents’ living room, the five of us talked to two separate candidates available for part-time work who’d been sent from the senior living community nearby. Mom sat mostly silent as the rest of us asked questions.
JAY: “Have you been trained in cardiopulmonary resuscitation?”
ASH: “Do you like to cook?”
ME: “Do you have children?”
We weren’t looking for specific answers so much as trying to get a feel for personalities. Afterward we convinced our mother that one of the women seemed sweet and fun. “She’s a lot like Anna,” we told her, knowing how much Mom adored her dear friend. She reluctantly agreed to give it a try. The next day, we stuck around while her new nurse’s aide, Millie from Ghana, arrived for her first day on the job. She was everything we’d hoped for: outgoing and loving, with the many good qualities of Anna and Mom’s other friends.
Largely because of Millie, we were able to get away alone with Dad to another caregivers conference at Northwestern that spring. He wanted to give it another try if we were there to do it with him. We still hoped for some new insight as to how to better handle PPA.
“Senior care” companies, offering free tote bags, buttons, and water bottles, lined the tables along the hall outside the auditorium where we sat inside, listening to lectures and young social workers telling us to take care of ourselves. We learned more by talking with other families, but overall drew little relief from the gathering. I was struck by the looks of empathy I got from people whose loved ones had already died. Their eyes said, There is no easy way through this. It sucks. We asked a daughter who’d lost her father a year earlier when she knew it was the right time to put him in an assisted-living facility.
“You’ll just know,” she said. Her answer was infuriatingly vague. And I couldn’t help envying her. She was already done with this hideous disease, and in a position to counsel others on how she survived.
—
The next few times my parents came to v
isit, we hired help in Nashville, too. But because Mom and Dad were there irregularly, the aides were different from visit to visit and even day to day. Few of them had much experience dealing with someone as challenging as my mother. They burned out quickly.
One day Dad left Mom at the guesthouse with a helper and came to visit me at our cabin. I opened a bottle of wine and put out some cheese on a plate. It was heavenly to celebrate a few simple minutes together with my father. We were almost giddy as he relaxed and allowed himself to be away from Mom for a little bit. We were watching the kids play in the yard when the phone rang. It was the aide, very upset. She asked my father to come back right away. When we got there, the woman was outside the house, pacing and crying.
“She hit me,” she said.
It was a game-changer. We had been warned that Mom could become violent, but this was the first time she had ever struck anyone. We’d finally gotten my parents to accept help. Now that solution presented its own set of problems. Though we apologized and felt awful about what had happened, that person left. We never saw her again.
—
Dad and Jay took Mom out to dinner later at a Japanese fusion restaurant near the farm. My father ordered her a rainbow roll. The food came, and they started to eat.
Suddenly my mother yelped, stuck out her tongue, and stood up at the table.
She’d accidentally eaten a bean-sized chunk of wasabi, the searing Japanese mustard. As a few patrons around their table turned to look, Dad calmly held out a glass of water. Mom slapped it away, spilling it, and sat back down. She spit the wasabi out onto her plate with a puking sound. A waiter appeared with a glass of milk. Jay held it up to her mouth.
“This will help,” he said. It seemed to. She settled back down.
Without missing a beat, Dad carried on with the conversation. “What are the feelings about the election around here these days?”
Jay was dumbfounded. My father had developed a maddening ability to pretend nothing had happened after a crisis with Mom. It drove my brother crazy. It was a survival instinct, a desire to help protect my mother’s pride to the end. If we don’t acknowledge it, it didn’t happen.
Because Mom’s short-term memory was dimming all the time, she, too, went back to eating as though nothing had happened. Within seconds she put the very same chunk of hot mustard back into her mouth.
“Ahhhhh!” she shrieked again, louder this time. She pushed back her chair, got up, and started making her way around the table in a panic, howling as she walked. All eyes in the restaurant turned toward her. Dad coolly picked up the half-drunk glass of milk and followed after her.
“Try this,” he said.
“Noooo!” she wailed, her face flushed.
Jay watched this scene with growing concern. He knew my dad’s approach wasn’t working.
So my brother did the only thing he could think of: He got behind my mother and grabbed her waist in a bear hug, the way he had learned as a firefighter to rescue people in emergencies. Carrying her with her feet a few inches off the floor as she shrieked, he took her to the exit, past shocked diners, speechless waiters, and astonished sushi chefs. Mom was hitting her head and crying.
“Thanks-for-coming-have-a-nice-night!” the hostess said, barely glancing up, as Jay shuffled our mother out the door.
My brother called me that night and recounted the story. We moaned with embarrassment and howled with laughter.
“No more restaurants,” Jay said, and I agreed. From then on we would cook in or order takeout when Mom was around. Both of us were troubled yet again by how little an incident like this affected our father.
—
After that visit, I wrote an email to Dad, sharing my siblings’ reactions to the visit and the current situation.
“This last trip to Nashville was the hardest yet,” I said. I made a case for twenty-four-hour care. We were fortunate enough as a family to be able to afford that kind of help, at least in the short term. I thought that by hiring an additional person or two for around-the-clock care—someone well vetted who was used to caring for someone like Mom, who could maybe even travel to Tennessee with them—we might finally have a real break. But even in suggesting it, I wasn’t sure that person existed. In the back of my mind, I was beginning to think my mother would be better off in a long-term facility. But along with that thought was the fear that she would be rejected, based on her growing aggression and complex care needs.
I was surprised when Dad wrote me back in agreement.
“She is increasingly crazy,” he said.
And though I hadn’t mentioned it to him directly, we were both hoping that in the face of her erratic and difficult behavior, the decision to move her out of their home would soon be made for us.
One day in the summer of 2011, Mom went missing.
There was a lot more missing in my life that record-hot season. I’d been raised to hope, to believe. I’d always trusted that good things or divine revelations could come from any crisis. Now Mom’s losses were my losses, and that faith suddenly felt like a convenient cliché, a cruel joke. Gone was my quest to find the silver lining in our family’s situation. I felt powerless, cynical, bitter. How could I have been so naive?
That was what I was thinking on the day Mom couldn’t be found. It was the beginning of the time when everything got even worse.
Mom and Dad were in Tennessee for a few days, and Dad had driven her to our cabin. He watched her walk through the front door, assumed that she was fine, and drove away. I was in the basement with my sister, who was also visiting, and we didn’t know Mom had arrived. Ten or fifteen minutes after we’d been expecting her, I called my father.
“I dropped her off ten minutes ago,” he said with alarm.
Ash and I searched the cabin. “Mom? Where are you?” She had disappeared.
Our voices echoed off the hardwood logs. We ran outside into the heavy summer heat and hollered, and again our cries seemed to mock us, ricocheting off the valley walls. There was no place else to look near my house. I got into the car and drove down the long, hilly driveway toward the guesthouse.
I rounded a curve and saw her, shoulders hunched, moving gingerly ahead of me. I caught up to her and realized that she’d taken off her sneakers, and she was clutching them to her chest. She was walking on the hot pavement in her socks. Her face was pink.
“You! Left me!” she spat at me when she saw me. I jumped out of the car and ushered her into the passenger seat to drive her home. But it was all I could do not to cry out what I had been feeling as never before: No! You have left me.
—
My father, a formerly devout Episcopalian, said he had started to feel spiritually anemic. He really didn’t know what he believed anymore. One day at the convent where he took his retreats, he saw a black-robed priest standing far ahead of him on a trail overlooking the Hudson. Dad turned away to avoid him. He didn’t even want to say hello for fear the priest would want to talk. My father worried he might have to confess that he didn’t have much faith left. That he was unable to take care of his wife. That although he had once made binding wedding vows before God and many witnesses, he was struggling in his soul with two words.
In sickness.
Mom’s screams of “I hate you!” at my father echoed down their block in New York. Dad got calls from neighbors who’d seen her storm out of the house.
“She’s on the move,” they’d say.
“Thanks, I’m tracking her,” he’d reply, grabbing his keys.
At night Mom got out of bed every couple of hours, usually pulling off the adult diaper Dad had put on her and relieving herself on the covers, the carpet, the door frame, the bathtub. Dad scrambled after her, groggy and numb, trying to clean up every bodily substance she left behind.
“Go away!” she yelled, followed by demonic-sounding yowling. Occasionally she threw things at him. Later she would be contrite, apologetic, though not fully knowing what she’d done wrong, like a child.
I r
esented my former mother, the woman I could barely remember now, who had left us with this mess. Why hadn’t she set up a more specific caregiving plan when she knew enough to understand the disease was going to get worse? She should have made a list of examples—bathroom accidents and aggression would have been at the top—to clarify what she meant when she told my sister in 2005 that she didn’t want Dad to take care of her. And she should have spelled out what she meant by “take care of.” Dad thought he was getting help with caregiving, and more than that, he still felt bound to the promise he had made to her that he would never ask her to live outside their home, away from him. Now that promise was haunting him.
I seethed. I was mad at Dad, too. How could he let her walk all over him? How could he let this disease kill both of them? I turned forty, and for the first time in my life, I didn’t hear from my parents at all on my birthday. I had a pit in my stomach. They’d abandoned me. And once again I hated myself for that selfish thought.
—
A couple of days after Thanksgiving that year, I got a message from Aunt Diana that my cousin Stephen was in a hospital in Raleigh with what doctors thought might be toxic shock syndrome. He was in critical condition.
“We need prayers,” she said.
I offered up a quick one—to what felt like just myself.
I sent word to the family. Dad relayed the message to Mom, who wanted to leave for North Carolina immediately. She understood something was happening, but she didn’t quite know what it was. By the next morning, she was furious with my father. She wanted to go somewhere, anywhere, and she couldn’t. She sat by the door in her quilted red coat, a green wide-brimmed hat in her lap. She stared out a window, seething, patting her hat with one hand, waiting to go, like a boxer between rounds. Dad knew that at any moment she’d launch into her next round with him.
Feeling helpless, I tried to conjure up that eight-year-old pure-hearted girl who’d once implored a star to protect her from skidding toward a crash on an icy hill. I shivered. I got on my knees and asked for strength and healing and smart doctors. I didn’t know if I’d been heard, but I did it anyway because Aunt Diana had asked me to.
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