Driving With Dad

This story comes to us from a community member helping care for her father, who is living with corticobasal degeneration (CBD). She writes about the everyday moments that keep them connected, and the daily effort to stay present as things change.

Five days a week, at a morning hour way too early for my teenage brain, my dad and I drove south on Topanga Canyon to my high school as my mom took my two young siblings to their classrooms elsewhere in the Valley. We would head under the 101 overpass and toward the hills as we listened to Morning Becomes Eclectic with Nic Harcourt on KCRW. Now, almost twenty years later, we toggle between 88.5FM KCSN and whatever other stations I can find on the unreliable touch screen of my old Prius as I drive my dad to his speech and swallow therapy, physical therapy, boxing class, church choir practice. Patience is required as I push the stereo power button over and over until the system remembers how to work.

My dad has lost almost all functionality of his left hand and arm. He hasn’t driven in almost a year. He will never drive again. Whenever I am home now, on the Los Angeles side of my bicoastal life, I drive him as often as I can. My goal is to give my mom a break from being the lifeguard on duty, as she aptly calls it, and to spend as much time as I can with my dad—this energetic, sonorous man who less than a year ago was still functioning as a senior executive at an international firm. His decline has been rapid, like he aged twenty years in the past twelve months.

Time morphs within this new reality. Wasn’t it just yesterday that he was driving us south on Topanga? That he was ok? I try not to dwell on the recent past where my dad could swing a hammer, could walk both of our family’s dogs, could speak clearly in his resonant voice. I don’t imagine too far into the future, slowing down my grief-stricken thoughts to the present, whenever possible. We are watching TV. We are all here together around the dining table. We are driving, listening to bluegrass music.

My dad’s memory is still intact, so though he cannot easily form words with his mouth, he remembers melodies and loves to sing. As we drive, we hum and softly doodoodoo our way through cowboy songs, the Beatles, ballads from the stage musicals he once worked on as a lighting designer. The music is our shared love language, needing no words.

On Mondays he has speech and swallow therapy, a twenty-minute drive in the direction of my high school. His appointment is the same time every week. My dad rushes to get to the waiting room, up two floors in the elevator. In the elevator, I adjust his sweatpants for him (without the use of his left hand, pulling up his underwear and pants requires assistance, every time). He’s rushing to hold the door open for the man with the appointment before my dad’s. This man is in a large motorized wheelchair, his neck held in place, eyes vacant. Two women usually accompany him—his daughter and wife, I assume. They’re grateful when my dad holds the door open for them.

Like me, my dad always wants to be helpful, productive, perfect. These traits have caused us both a great deal of self-inflicted stress at times. With my dad’s physical capabilities now a fraction of what they used to be, any opportunity he can find to be useful is a gift.

In the appointment, the speech and swallow therapist asks cheerful questions.

“Isn’t it nice to have your daughter here?”

“Yesitsgreat.”

My dad’s speech is garbled, his mouth twisted into a strained shape, but still he smiles. Wearegoingtothebeachtoday. The therapist is kind but firm, making my dad repeat words and phrases until he’s more intelligible. Slow down, she reminds him. You have to slow down.

My dad was never one to go slow. Quick to try and fix, fast to overwhelm and anger. Always moving from one handy task to the next—build, repair, assemble, take apart, put back together. But last fall, at sixty-seven years young, he was diagnosed with corticobasal degeneration, or CBD. CBD is a rare progressive neurodegenerative disease characterized by muscle rigidity, speech issues, difficulties swallowing, cognitive decline and asymmetrical loss of functionality, among other symptoms. Eventually, people with CBD lose the ability to walk. We are not there, yet.

The average lifespan for someone with CBD is six to eight years from when symptoms first present, but varies from person to person. There is currently no treatment or cure. Aspiration, when a person accidentally inhales food or liquid into the lungs, is a common risk for people with CBD. This makes everyday activities like eating or drinking stressful and sometimes scary.

We don’t and can’t fully know just how far along my dad is, but he has admitted to experiencing what he thinks were his first symptoms in 2019—seven years ago. This fact feels both terrifying and miraculous. My word for the year is “miracles,” to remind myself they exist in big and small moments. Thank god my dad is right-handed. He still has his sense of humor. Here we are, juicing grapefruits from the tree in the backyard.

My mom enrolls my dad in a boxing class for people with Parkinson's and other neurodegenerative diseases like CBD. This is one of the myriad ways she is determined for my dad to show himself he’s still capable, still alive. For the first few weeks, she drives the thirty miles roundtrip three times a week. I’m not there to help—I’m across the country in New York City. Mom shares updates via texts and phone calls.

The first time I drive him to Calabasas for the class, I feel like I’m dropping off an excited, oversized middle schooler at baseball practice. I clip my dad’s name tag to his t-shirt. The laminated white square is covered with stars and smiley face stickers, my dad’s name written in colorful marker. Before I can say much more than a quick goodbye, he rushes off to start his independent warm up. The coach helps my dad secure boxing gloves on his wrists.

The class begins, and I walk across the parking lot to an overpriced coffee shop, where I run into the wife of one of the boxing class participants. Her husband is a cancer survivor who’s been living with Parkinson’s for years. The woman is sweet, smart, generous. I had intended to work during this window, but our conversation is a much-needed therapy, two people generations apart marveling at the sacred experience of our profound grief. Ninety minutes later, our laptops untouched, we walk together back to the gym and watch as the session concludes with meditative stretching led by a gentle giant of a man. At the end of the class, everyone claps.

Physical therapy is on Tuesdays, sometimes Wednesdays. I don’t go inside those sessions, instead sitting with my laptop at the fast-casual chain restaurant on the first floor of the building. During one of these appointments, I order chips and guacamole and call adult daycare centers to ask about openings and registration. My mom—my dad’s remarkably courageous caregiver—is doing a heroic job of keeping my dad alive and our family’s world from falling apart. She is deeply pragmatic, her resilience tremendous. Our daily conversations range from brain donation to anti-choking devices to life insurance, a death math I try to discuss without collapsing. We both know she will soon need help keeping my dad occupied and safe.

I realize one of the top internet search results for nearby daycare centers is an intergenerational facility where I volunteered in high school for community service credit. I’m in my thirties now; high school feels like a long time ago. I get my dad on the waitlist for a tour of the daycare facility, but before I can finish my snack, I see him lumbering toward my car in the parking lot. His appointment got out early. I quickly bus my table and slip my laptop into its padded sleeve as I rush for the door, not wanting him to get confused.

“Dad!” I wave. He waves back with his right hand.

In the car, I ask about his appointment. He responds through labored speech.

“It wasgood. Hard. I hadtoplay ConnectFour. But onlyusingmy left hand.”

Among countless useful skills, my dad taught me how to parallel park during those high school years almost twenty years ago. Step one: pull up until you’re alongside the car in front of the empty spot. Step two: turn the wheel—hard but not too hard. Step three: back in slowly, spatially aware, then straighten the wheel. We practiced with traffic cones in an empty parking lot before graduating to the real thing. I still think of him whenever I succeed on the first try, sending up a little prayer of gratitude for this ritual of remembrance. Thank you, Dad. Thank you.

We arrive at the beach, following that day’s various therapy sessions. I parallel park on the ocean side of the street. Thank you. It was my idea to go to the beach after a day of appointments and boxing—we are lucky to live relatively close to the ocean. We are lucky for many reasons.

We unload the car. My dad tries to carry both chairs, the umbrella, the towel bag, our lunch, his kite. He has always loved flying kites, but now flying a kite is one of the few activities he can do that still feels normal, he says.

“Let me carry something!” I laugh.

We trudge through the sand, choosing a spot not too far from the receding tide, and set up our chairs. Or rather, he tries at first—I decided early in his diagnosis to always let him try, offering a Let me know if you want help, which he used to decline, stubborn. These days, he’s more quick to accept help. He knows what is happening to him.

I unwrap our deli sandwiches, accepting the reality that much of his will end up on his t-shirt. Chewing is difficult for him now. He’s not aware of drool, or food in his beard. When I think about what is gone and what is ahead, I become overwhelmed with grief. But right now, we are clinking our sandwiches like champagne flutes, mustard dribbling down our chins. As I sit with my dad, desperate to be right here right now, the ocean’s ancient rhythm reminds me there was a time before and there will be a time after. The death of a parent or guardian is a language we all eventually speak. CBD asks me to live each day in surrender to this truth.

A dolphin pokes its head above the crest of a wave. Seagulls wait for our sandwich crumbs.

“Iloveyou, Olivia.” The words are clear.

“I know, Dad. I love you, too.”

We squint toward the horizon in silence, the umbrella unassembled because it’s a grey, overcast day. Not too cold, though. It feels right.

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