But I was shaking and my heart was racing. I clutched Jasper tightly to me. As I walked back to my seat, I saw the horrified expression on Robin’s face.
How could I have let that happen? I thought. Mom went into the bathroom, probably to cry. I turned to Robin and whispered, “Did you see that?”
“Yes!” she said, equally concerned. We were afraid to say anything else. Mom would be able to hear, and I already knew that my father and I would be dealing with her shame and fury for at least the rest of the day.
I didn’t bring it up with Brad at the time. I didn’t want to worry him. But it felt as if the ground had turned to slippery ice, and I was struggling to get my balance. I realized with certainty that my most important job was to protect my children from their failing grandmother, a challenge I had never expected to have.
What else could go wrong? My mind scrolled through as many disaster scenarios as I could imagine. What was once a safe cabin turned into a terrifying danger zone as my mind filled in the blanks. I imagined my babies tumbling from my mother’s arms and down the stairs, off the balcony, or out a window. What if she tried to feed them Legos instead of peas? What if she picked them up by the neck? (That almost happened later, but I was there to stop her.)
Suddenly nothing was beyond the realm of possibility.
I realized that another adult and I would have to be home with my boys anytime my mother was there, in case of emergency. We would have to watch my mother and kids constantly, and know how to steer Mom away from potentially dangerous situations. Ideally, the double-team arrangement had to be set up discreetly to protect my mother from a catastrophic emotional crash if she found out about it. My mind spun out of control, wondering what else I could be missing.
My parents’ departure could not have come soon enough.
—
By the middle of that summer, we noticed Mom needed help eating food. Once it was on her plate, she usually ate with the wrong utensil. She tried using a spoon or a knife as a fork to eat long strands of spaghetti. Mealtimes were messier with Mom at the table than they were for my children. Like them, she often needed a change of clothes afterward. Extra napkins didn’t help. She bunched them up to wipe her mouth and tossed them aside, leaving her lap wide open. I was embarrassed for her, but she didn’t seem to mind the mess she was making. So, like many other things, we laughed it off and cleaned it up.
Eventually she wouldn’t let my father work alone as often, so he and I weren’t able to talk as easily. With Dad’s increasing duties as 24/7 caregiver and mine as a new mother of two, the book project fell away. My father had always been thin. Now he was losing weight and appeared frail to us. He didn’t have the focus that he’d once had. He called less and less often, and rarely responded to voice messages or emails. We went to New York whenever we could. But we couldn’t be there all the time, so we were living in dread about what was happening to them at home.
Mom started meeting Dad’s attempts to help with toxic resentment. Her face reddened, and she became sullen, distant, angry. She couldn’t say how she felt, and hated him for not guessing correctly. They fought when she wanted to walk outside, by herself, in a storm. She wanted to experience the excitement as she always had, but no longer understood its potential dangers. She couldn’t be left at home for fear she might hurt herself and not know how to get help. But most of the time she didn’t want to be alone, and it was harder and harder for my dad to get even a little time to recharge.
All the same, he wondered how much grief he would feel when this intractable stubbornness began to fade. Now, though, it was too intense, like a lightbulb with blinding wattage.
In a rare move to get help for himself, he signed up for a caregivers symposium at Northwestern in August 2009. The Cognitive Neurology and Alzheimer’s Disease Center had stayed in touch with him, keeping track of Mom from afar and sending my father updates on research and information on support groups. More than anything, he thought the event would be a legitimate reason to take some respite time. Our friend Anna volunteered to stay with Mom so Dad could get away.
At the conference, he learned more about the latest research on frontotemporal disorders, including PPA. He went to a support group meeting and without being asked took on the role of breaking the ice in the discussion, telling a little of his story and showing sympathy for other participants. He was surprised when the actual leader of the session, our old friend Dr. Weintraub, pulled him aside afterward. Maybe, he thought, she would thank him for helping her facilitate.
“Have you considered getting treatment for depression?” she asked. He hadn’t. He was so focused on my mother’s mental state and so out of touch with his own that it hadn’t occurred to him that he’d shown any vulnerability or sadness.
Rather than being a relief, the conference ended up having the opposite effect on him: The brief distance had allowed him to see clearly that PPA was a horror, and it left him drained.
In sharing this new awareness with my mother in their living room afterward, he began by talking about all the positives in their lives—the kids and grandkids, the good works she’d done, her laughter and joy in life, his love for her. Then he hit her with the big news: He needed to get away more. He felt depleted. Depressed, he admitted. My mother cried quietly and said, “I’m sorry.” He tried to get her to talk more about how she felt, but she couldn’t add anything else.
He hired a woman from the local YMCA, Laura, whom Mom loved, to come once a week or so to take her out or just to do things with her at home, allowing Dad some quiet periods to be by himself. At first, she was happy with the arrangement. My brother and sister and I thought it was hardly enough, but our dad was adamant that he knew what they needed.
—
Early one morning that fall, sitting at his desk downstairs at home, Dad noticed an uncomfortable tightness in his chest. He started sweating and became nauseated and short of breath. His parents had both died of cardiovascular disease, and my dad had spent years later editing a newsletter, the Cleveland Clinic Heart Advisor. So he was familiar with these four signs of a heart attack and knew they should be taken seriously. He didn’t want to be the medical journalist who’d instructed readers when to call for help but then ignored his own advice.
Mom, having just woken up, appeared at the door of his office. This is really going to be hard for Linda was Dad’s first thought. He knew he needed to take a potentially lifesaving step without scaring her.
“Scout,” he said, “I’m so sorry. Things are about to get a little chaotic. I’m going to have to call 911.”
“Oh! Oh! Oh!” Mom grabbed at his arms.
“I’m gonna be fine,” he went on. “I’m just feeling some symptoms in my chest that I’ve written about.” Again he said, “I’m so sorry.”
He dialed 911 from his office phone. Mom was pacing, anxious.
“Why don’t you go get dressed? You’ll come with me to the hospital.”
“Okay!” my mother said, and ran upstairs.
Dad lay down on the soft carpet of their foyer, figuring (as one of his medical sources had suggested) that this would make it easier for paramedics to perform CPR chest compressions if needed. A police officer was the first to arrive, and when my dad heard the knock he hollered at him to come in. When Mom heard the door open, she came downstairs in just a bra. The officer didn’t seem to notice. But Dad did.
“Hey, love,” he said quietly. “Go put a dress on.” She ran back upstairs.
An EMS crew came next. And Mom reappeared, still undressed, this time carrying a shoe.
“This?” she asked my father, who was sitting amid the medical team attending him.
“No,” Dad said. “Clothes.”
She headed back up to their bedroom. No one made a move to help her. A paramedic scanned Dad’s EKG reading and put an intravenous line in his arm. Mom came and went in different states of undress, flustered and confused. Dad lost track of her, an uncommon departure from his usual vigilance, though he
did brief the group about her dementia. Somehow she made it to the front seat of the ambulance fully clothed as they sped away, siren wailing.
He spent that day and night in the hospital so doctors could observe and monitor him. He called their friend Sheelah to pick Mom up and take her to their house for a sleepover. After numerous tests—“too many,” Dad said later when he called to let me know—doctors found no evidence of a heart attack. It had been purely stress- and anxiety-induced.
“You need more help,” I told him. “This is not okay. This is a wake-up call, Dad.”
“It’s not a wake-up call. It’s a pulled pectoral muscle,” he grumbled. “I knew it wasn’t a heart attack.”
My frustration was growing. I wanted to give him the benefit of the doubt. I could only imagine what it was like to be in his shoes. I admired his instinct to care for my mother, to be a hero, to watch over her at all times. But he was losing perspective and common sense. I had held him up on a pedestal my whole life. He had always been my smart, strong, calm, centered father. Now, for one of the first times in my life, I realized that he was making foolish decisions and didn’t know it.
—
I read studies online about the mental and physical risks of full-time caregiving. I learned that people like my father are vulnerable to multiple health problems: compromised immune systems, serious infections, depression, and even cognitive decline. He needed more help, and he still wouldn’t admit it. I was starting to see that we were in danger of losing not only our mother but our father as well if we didn’t act.
From the second I spotted them in baggage claim when they visited a couple months later, I could tell by my parents’ faces that something was wrong. Other arriving New York passengers stared down at the conveyer belt, willing it to come to life and deliver their luggage. My mother was distracted, looking around for something she couldn’t name.
Before even saying hello, Dad whispered, “Can you help your mom in the ladies’ room?” He passed me a wrinkled plastic Holiday Inn laundry bag and nodded toward the restroom sign. Mom didn’t say hello, either. She just giggled and shrugged at me as if to say, Isn’t this weird?
I’d imagined that this trip to Nashville would give me and my brother a chance to learn more about her current state and to bear some of my father’s caregiving burden. He’ll take naps and have time to write, I’d hoped. Maybe take a drive with Brad…
But like many moments to come, none of what I expected happened. I glanced into the bag. Perhaps five hours before, when they’d left their house in New York, it had contained everything Mom needed for two and a half hours in the air. But now the supplies Dad packed had dwindled down to one pair of giant-looking tan underpants and one Ziploc baggie with a few sheets of rumpled tissue. It was as if he’d just pushed me off a cliff with a paper parachute. Really? I wanted to say.
“Let’s go!” I said instead, as brightly as possible. “We’ll be back in a second.” I steered Mom by the elbow toward the ladies’ room. We passed a few other women as I led her to the handicapped stall farthest from the door. She stood facing me. I handed her the skimpy bag.
“I’ll wait right here,” I said, backing out of the stall.
“What,” she said. “What.” She waited for me to understand something.
“You want me to come in?” She held out her hand to me, and I realized: She doesn’t know what to do.
My dad had likely begun dealing with incontinence at home without telling us. It was up to me to take his place here, with no more warning than he’d had the first time. This abrupt initiation into the world of intimate, hands-on caregiving felt clumsy and awkward.
My mother had wet herself through her khakis, probably right after the plane landed. She unbuckled her belt but sat down on the toilet with her pants on.
“Oh, wait a minute,” I said, as if I had just come up with an interesting idea. “Let’s get these off first.” I held her hands. She’d gained some weight, and it was difficult to stand her up because she didn’t understand what I was trying to do. I pulled down her damp pants and underwear. She giggled. To my amazement, Mom was trying to make this moment easy for us by keeping it funny.
“Oof!” she said as she landed back down on the seat, halfway to a pratfall. I kept smiling as I dialed Dad on my phone. He didn’t answer. I needed dry clothes from a suitcase. If I left her alone to get them, she wouldn’t be able to lock the door after me. She could wander off into the terminal with her pants around her ankles. My mind raced.
Should I get her dressed and take her back outside wearing the wet clothes, or abandon her while I try to find Dad? I wouldn’t leave my child here like this.
But she is an adult.
But in some ways, she’s like a child.
And what if Dad hasn’t picked up their bag yet?
Mom had stopped laughing. It was quiet in the bathroom. We were alone for the moment. I took my chances.
“I need to get you something else,” I said. “I’ll be right back.”
“Okay!” she said, still managing a smile. I left her in the stall with the door open and broke into a jog toward the baggage claim, calling my father again. This time he answered.
“Dad!” I said. “Quick! I need her clothes!”
“Sure,” he said. “I’ve got the bag—”
I hung up on him. No time to talk, I thought, panic starting to rise with each second my mom was alone in that stall. Moments later I reached him and he passed me some fresh clothes from her suitcase. I raced back to the restroom.
Someone was in another stall when I got there, and I didn’t know if my mother had made friends with her from her toilet throne. But I was relieved to see Mom in the same place I’d left her, still smiling.
We didn’t talk about what happened on the way to our house, or any other time. But the incident led my dad to learn that many airports and other public places have “family restrooms” to accommodate parents and children, as well as both genders at the same time. From then on, he would find them online before they left home so he’d know how to get to them quickly. And he would always pack a full change of clothes for Mom and plenty of cleanup supplies in their carry-on bags. Later he’d even figure out how to change her in the backseat of a rental car in a parking lot, as well as in the cramped lavatory of a plane while other passengers wondered what the two of them were doing in there.
—
During this trip they stayed in our guesthouse on the farm. They had their own bedroom and bathroom, which allowed them to come visit for longer periods, sometimes weeks, while still giving us all some private space.
We gave Dad as much time off as we could. My brother picked up Mom for a walk or a ride in his truck. My friends Terri and Paula joined my mother and me for occasional lunches. Sandy and Jay’s mother-in-law, Linda, took Mom shopping. Nana and Huck, who was three by then, spent time together often, in the playroom at our cabin, while I sat nearby supervising with Jasper in my arms.
She bought Huck a jack-in-the-box on one of our shopping trips. The two of them wound it up again and again, and shrieked when the clown sprang out of the box.
“Pop goes the weasel!” Mom still knew the lyrics.
“Again!” Huck yelled. And they did it over and over.
In another game, he would sit in her lap and tell her, “Nana, say ‘Jasper.’ ”
“Ssss. Spasper!” she’d answer. She wasn’t able to get his name out more clearly than that, and she and Huck would both crack up over their invention of a game born out of her disability.
One day Mom stopped laughing during the “Spasper” game and got quiet and sullen. She let us know she wanted to go home. We called Dad to pick her up and take her back to the guesthouse. She left our cabin coldly, with many words unsaid. My father called a few minutes later.
“Huck hurt your mom’s feelings,” he said. “She doesn’t want to play that game anymore. I think it would help if you brought him over here to apologize.” I felt as if I were hearing fro
m the parent of another toddler that my son was a bully on the playground.
“What changed?” I asked. “She used to love it.”
Dad admitted he had always been a little uneasy when his grandson made fun of Mom, even though she’d always been able to laugh at herself.
“I think she never really liked the game but she was playing along to make Huck happy,” he said. Dad was treating her sadness as though it were rational. I swallowed my instinct to point out that Huck was three and that bringing her anger to his attention would only highlight her shortcomings for him. He was the only one in her world now who genuinely loved playing with her, who didn’t see her as sick or odd, just fun and silly. Making him apologize would take away a measure of innocence and teach him what we hadn’t had to yet: Nana is different and needs to be treated delicately.
I had to figure out a way to make sense of it for Huck.
“You’re not in trouble,” I told him. “But Nana has difficulty talking sometimes. And the game you play together hurts her feelings.” He stared at me, uncomprehending. “She actually wishes that she could say Jasper’s name, but she really can’t. Do you understand?” He nodded, looking confused. “Do you think you could try to help her feel better?”
We practiced an apology together, and then found Mom, sitting in the guesthouse on the couch next to my father with her arms crossed. Her face was wet with tears. When she saw my son, she glared at him. He stopped and stared. He seemed to have forgotten the words we’d rehearsed. I nudged him.
“Sorry, Nana,” he mumbled.
“Okay,” she said quietly. He looked to me, and I nodded. Yes, good. Keep going. He approached her warily, hugged her, and then stepped back. In a matter of minutes, she’d changed from a loving and fun pal to a frightening, angry old lady. I ached for the pain and confusion both of them felt.
“We need to find new ways to have fun with Nana,” I told him later that night. But even I didn’t really know what that meant. Was there any more fun to be had? Where was my real mother? I was losing sight of her. But my firstborn somehow accepted this and took it to heart, determined to try.
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