The ambulance arrived about fifteen minutes later on a road paralleling the bike path. Dad went with Mom to Nantucket Cottage Hospital. There she was taken away from him. A nurse gave Dad a green scrubs shirt to cover his naked torso and told him to stay in the waiting room.
But the staff soon learned that my mother couldn’t tell them what happened. Her answer to every question was “Ask my husband.” So they called my father in to help determine her “baseline.” The challenge was trying to decide whether the accident had left her unable to communicate, or if her hesitation and confusion were always like this. Dad briefed the competent staff on PPA. They’d read about it but had never seen an actual case. Beyond their concern about possibly new neurological problems, the doctors were worried about Mom’s complaint of abdominal pain—at least she was able to show them where she hurt—and the potential for internal injuries.
Larry and Betsy arrived at the hospital, bearing Mom’s missing right front tooth with an intact root. Doctors implanted it, bandaged Mom’s cuts, and kept her head and neck stable. But, still concerned about internal injuries, they decided that she needed to be helicoptered to Massachusetts General Hospital in Boston for testing and scans. She was released the next day after spending a night there under observation.
Dad relayed the story to me over the phone from outside Mom’s hospital room. I was sitting in my car in the CBS-Radford lot in Studio City, California, holding up a rehearsal for According to Jim. By that point, the cast had met my parents many times and knew what was going on with my mom. We were all gracious and patient with each other when a family issue like this came up for any of us.
The accident had been a blow to Mom’s self-confidence, Dad said. It was another reminder that she couldn’t be the adventurer she once was. That she needed assistance in things she used to do by herself. It was also yet another tug on his conscience, telling him that his wife shouldn’t have been operating any kind of vehicle that moved faster than a walk. I was relieved to hear him say that. Three thousand miles away, I was overcommitted to work and to my growing family, and unable to fly home for long enough periods of time to really help. It was going to be up to my father to rein in our mom.
But even after her fall, she kept driving. Jay, Ashley, and I pointed out individually to Dad (because Mom still refused to discuss it with us) that she might kill someone—a child, perhaps, someone like her grandson. We pleaded for him not to let that happen. On top of that, we said, if Mom hurt or killed someone while she was behind the wheel, we would all be liable. He understood what we were saying and agreed, but still felt powerless. He didn’t know how to stop her. He called the disease “the rat”—an intruder gnawing at her clarity, memory, and rational thinking. But it was becoming a presence in his head, too, frightening him, clouding his own reasoning. He let the rat rule.
And each of us, busy in other parts of the country, chose to say, “So be it.” It was uncomfortable to question his judgment, and impossible to influence his decisions at a distance. I wish now I had fought my parents harder on it. I was learning as I went, and operating on a certain level of denial myself.
One day that summer, about a month after the bike accident, Mom’s car ran out of gas after she’d driven herself to the beach close to their home. Unable to reach my dad, she started walking. A former high school classmate of mine, Sophie, found her by the side of the road and offered her a ride. It took a little coaxing to get Mom into the car. My friend’s young child was screaming in the backseat.
Sophie didn’t know that Mom had dementia. Few people did. “Where do you live now?” she asked. Mom’s answer was jumbled and confusing.
My friend knew my parents had moved, but she didn’t know where. She thought Mom was just being polite in not telling her where to go—as though my mother didn’t want to burden her with having to take her home. She noticed a moment of clarity when Mom asked about Sophie’s father, who was a doctor. Finally, though, with her little girl still yowling in the backseat, my friend deferred and let my mother out of the car by the side of the road. Both of them felt awful as they parted. Somehow my mother found her way home on foot.
The next day, Dad wrote out an apology for her on a piece of scrap paper. She rehearsed it over and over.
“I am sorry for the confusion yesterday. You were very kind to offer me a ride and I’m grateful.” She bought a small potted plant as a thank-you gift, drove by herself to the right house, knocked on the door, and delivered her speech, cogent and clear.
In a rare move, my parents let me know what had happened. They said Mom was worried that she might be the subject of gossip. Grateful for permission to share the truth, I emailed Sophie right away, and for the first time told someone I didn’t know very well anymore about my mother’s sickness.
I wanted to thank you for helping my mom the other day….She’s dealing with a degenerative brain disease called primary progressive aphasia. It makes her confused and unable to speak sometimes, among other things. The disease is really rare, and we’ve just discovered she has it in the last year. I’m sure you noticed she was not totally herself….If you see her again, I don’t want you to feel like you should avoid her. It meant the world to her that you said hello and were so nice….I’m sorry if it was stressful or confusing for you.
She wrote back right away:
Please emphasize to your mother that we all continue to hold her in high regard, and that the dignity with which she is obviously facing this challenge only serves to increase our respect for her.
I will always be grateful to Sophie for such an elegant response. It was exactly what I would have hoped for: that people wouldn’t ostracize us because of Mom’s illness.
—
Finally, and fortunately, the Ford Explorer got old. Dad exaggerated its mechanical failures and grumbled that it wasn’t safe, hoping that Mom would agree they needed to trade it in. They both got excited about the idea of a cute little Prius. It was fuel-efficient and had a navigation system with a pleasant woman’s voice that gave them directions.
Best of all, my dad secretly suspected that Mom wouldn’t be able to figure out how to drive it, with its small and unfamiliar “RNDB” control knob in lieu of a gearshift. The engine wouldn’t start unless she pushed on the brake pedal at the same time she pressed a button on the dashboard—an engineering touch that Dad thought might keep her off the roads.
She insisted she wanted to practice in the new vehicle so she could learn to drive it. The conflicts got more and more intense. It was one of the hardest times for my father. Belatedly, he offered to enlist the help of professionals. He told Mom that if she passed a formal driving test, then he would say he was sorry and agree he’d been too critical and cautious. Problem solved.
Giving her false hope was an antidote to further poisonous fights. And she was finally off the roads. But it meant that now he (and others) had to participate in a series of pretend training sessions in a large and usually empty parking lot near their home where all three of us kids had learned to drive.
As he worked with her throughout the summer of 2008, he suffered stomachaches whenever they got to the parking lot. With his help, Mom was able to make the car go forward and back, but she had trouble following directions like “Take us toward the light post.”
Their preparations for the test—one that everyone but Mom knew would never happen—stretched into the fall and winter.
“How is the Prius?” I asked on the phone, in a vague way trying to encourage her to talk about driving.
“Great!” was all she would say.
One weekend Ashley flew home and offered to be Mom’s instructor for an afternoon, as she’d done often. She took Mom in the Prius to the empty lot. They stopped and traded seats.
“What’s the very first thing you need to do when you get into any car?” Ash asked. Mom tapped the dash, adjusted the mirror, and slapped the wheel, but she didn’t know rule number one: Fasten your seat belt. She never got close to starting the car.
“I’m never gonna get this, am I?” she said finally.
Ashley turned to face our mother.
“No, I don’t think so, Mom,” she said.
“I’ve lost my…” Mom paused to find the word. “Authorship.”
My sister gasped. Somehow, in her jumbled brain, my mother had found a word close to “autonomy,” and in the moment, it perfectly described what she’d lost. Ashley burst into tears.
“Oh!” Mom said, and wrapped her arms around my sister, comforting her.
“It’s not safe for you to drive, Mom,” Ash said, weeping.
She felt my mom’s chest shudder, and then, in another moment of clarity, Mom finally answered, “I know.”
—
She never drove again, though sometimes she forgot why she couldn’t. Within months, even her desire to try faded away.
A quirky collection of vehicles lined up at the edge of our pond in the late spring of 2008, like preparations for some kind of parade. The music—“Surfin’ Safari”—blared from speakers in Brad’s truck. Its blue hood gleamed in the sun. Squatting next to it was our yellow skid-steer loader, a slow-moving machine the size of a baby elephant, which Brad and Huck (in a baby carrier) would ride for joyful hours at a time, moving small boulders from here to there.
My parents’ silver Prius hybrid, a clown car by comparison, had brought Mom and Dad from New York. And my self-proclaimed “redneck relatives,” the Getzelmanns, had poured out of their overstuffed red minivan when they’d arrived from North Carolina.
The family gathering was an ambitious Brad production, blending southern farm and northern suburb, toddlers and newlyweds, parents and grandparents all together in a mixture of circus and sitcom. My husband had loved having the extended family together for Christmas months earlier, and had particularly bonded with my cousin Stephen over being a new dad.
Brad wanted to get the whole group together again for a silly reunion. It would be the two of us, Huck, Holler, Ash, Aunt Diana (Mom’s sister), Uncle Bill, Stephen and his wife, Beth, their newly adopted son, Tyler, Jay and his wife, Adrienne, Sandy and Doug, and my mom and dad. My in-laws had recently moved nearby. So had my brother and his wife. Everyone else would stay on the property. We’d converted the old farmhouse into a studio and guesthouse, and built a log cabin in the woods, where we now lived. Our guests would crash wherever they could—in guest bedrooms, on couches and floors—for three nights.
Brad’s plan was derived from a 1997 Seinfeld episode that introduced the world to a fictional holiday called Festivus. It was based on an actual family tradition for one of the show’s writers, Dan O’Keefe. In his version, the rampant commercialization of Christmas destroys peace and goodwill among men. Two of the characters actually come to blows over the last doll in a store. One of them, George Costanza’s father (played by Jerry Stiller), realizes there has to be a better way. In O’Keefe’s script, the celebration begins when you gather your family around “and tell them all the ways they have disappointed you over the past year.” It was one of Brad’s favorite episodes.
Our Festivus would be a slightly friendlier version. It would be the opposite of stuffy, and the only pressure we’d put on one another would be to keep a sense of humor and do whatever we wanted to do. It would be the antidote to all of the ghosts of Christmases past. Out of necessity, but best of all, the ringleader in many ways would be my mother. We would follow her recent lead in throwing etiquette out the window.
My husband’s garish, hastily made invitation promised the main events and features of Seinfeld’s Festivus. His full-color Photoshopped digital creation made it clear that it was an unholy holiday. Instead of a tree, we’d set up a bare aluminum pole. Instead of presents, we’d have a gag gift exchange, a way to get rid of old stuff we didn’t want. There would be “Feats of Strength” (haphazard dinghy races across the pond for the prize of the Festivus Dixie Cup), “Sunset Parties (so wild you’ll still be rockin’ at sunrise),” and, lastly, “some chips (subject to availability).”
Everyone accepted the invitation with great enthusiasm. Ashley volunteered to take on the role of Director of Schedules and Activities, with events including an “Airing of Grievances,” fishing, napping, and drinking beer whenever we wanted. Jay and Adrienne offered to cook ribs on the grill. The Getzelmanns planned to make their famous seven-layer Mexican dip. Mom and Dad practiced a special performance. I put together “gifts” for each person, filling used paper or plastic bags with things like expired Emergen-C powder, stale gum, Band-Aids, and half-used packages of Alka-Seltzer. Brad made a special playlist including songs from the Beach Boys, Hank Williams Jr., Jimmy Buffett, and Andy Griffith. We bought the ingredients for s’mores, bottles of bug spray and beer, and tubes of sunscreen. After briefly looking around the farm for an aluminum pole, we settled instead on a broken broomstick.
Once everyone arrived, the party began. We congregated at the edge of the pond on a twenty-foot-long stretch of sand Brad and Huck had created with the skid-steer. We called it Betty Beach, named after my grandmother. I walked around with a video camera, documenting. While Brad worked the soundtrack (“Cheeseburger in Paradise” came up after “Surfin’ Safari”), Doug and Uncle Bill gathered fishing gear and Stephen helped Tyler, age two, catch his first bluegill.
“That would be a party foul,” my cousin said with a smirk, holding up a broken fishing pole. “You do not break the rod while catching the smallest fish of the day.”
“Grievance!” I shouted.
“Good news,” he added, his blue eyes sparkling, “is that Tyler got his first fish.”
Mom, Diana, Beth, and Sandy danced the Twist next to the remnants of seven-layer dip and a half-eaten bag of stale chips.
“Woo!” my mother yelled, arms swinging. Gone were many of her feelings of propriety. And in some ways, she seemed the happiest she’d ever been. She adored everyone and everything. She treasured having the family together. She loved being a grandmother. She’d always been quick to laugh around Diana. Years before, when Stephen and I were kids, we’d watch the two sisters as they raced lobsters across the floor or cackled over some fantastic secret we weren’t supposed to know. At Festivus, despite the obvious progression of PPA, Mom giggled with Aunt Di as much as ever.
“Sand!” she cheered to one-year-old Huck when he face-planted and ate a mouthful of it for the first time. Her shorter responses were ideal for communication with a toddler, and to him she seemed not only perfectly normal but really fun.
Dad was the only one who was suffering. He looked tired, despite putting up a front. I’m sure he was dealing with a lot more struggles than we knew, but he was good at hiding many of them from us. As always, Mom wanted him to keep the real challenges private.
He and I each pulled two small metal boats into the water to race for the only scheduled “Feat of Strength.” My partner, Sandy, dutifully sat behind me as I paddled us both across the one-and-a-half-acre pond.
“Come on, Kimmy! You can do better than that!” Aunt Diana chided from shore.
Mom sat in the back of the other boat with Dad, slapping and pushing on his shoulders as though that would increase his speed.
“Go, Gurn, go!” she howled. “Fast!”
Though she was enjoying herself, Mom knew less and less about what was going on—how to follow conversations, how to use an oar. But it didn’t seem to bother her much, and she made up in enthusiasm what she lacked in understanding. Brad videotaped us from the shore and tried to shout directions, to no avail. Stephen snorted and kept on fishing. Mom and Dad won the race, and my father pumped his paddle in the air. Everyone cheered. Dad maneuvered to shore and got out of the boat. From behind the camera, Brad asked him how he felt.
“It was a generational race,” my dad said. “Younger people are a lot worse than older people.” They heard Mom cackle.
“Gurn!” she shouted, and giggled again. She was still in the dinghy, uncertain about how to disembark. Dad ran back to her and used both h
ands to pull her up out of the wobbly boat. He barely avoided soaking them both in pond water.
We cleaned up slightly and met for cocktail hour on our deck overlooking the farm. I was inside when I heard my mother’s shriek of surprise. She had accidentally walked into the closed screen door from the porch, knocking it off its hinges. It clattered sideways, but no one was hurt (although the door never closed straight again). It only briefly stopped the party. We helped her laugh it off.
Brad timed a different playlist to the setting of the sun, culminating with the theme song from 2001: A Space Odyssey, “Thus Spake Zarathustra.” We put arms around each other, watched the last rays disappear behind the hills, and toasted to a grand, irreverent day.
It was then that Mom dropped a glass. She must have gotten distracted or confused. I heard it shatter on the porch. We put shoes on Huck and Tyler, whisking them away from the mess, and cleaned up the shards with a dustpan and broom in the dimming light. Mom was apologetic and embarrassed, but again we laughed and reassured her. We replaced her drink and said it was no big deal. When she broke her second glass, we switched everyone to plastic so my mother wouldn’t feel singled out.
Later that evening, we all sat around the table for dinner, and the “Airing of Grievances” never got more insulting than “Your socks have holes in them” or “You double-dipped your chip.” The few jokes about breaking down screen doors or smashing glasses were good-natured. Mom didn’t stop smiling.
I’ll never forget the final night of what everyone agreed was a successful first annual Festivus. We’d just finished dinner. Sandy held Huck, who cooed and pointed. Tyler shuffled around his mother’s feet. Stephen stood watching from behind his handheld camera, which he used to record almost everything. Aunt Diana was cackling even before the evening’s entertainment began.
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