On the Dementia Trail: My Life in an Uber

Inspiration often comes from the sea.

Camden Harbor, Maine is a sweet spot for me. A place of boundless reflection. Not long ago, I was on a back deck with my wife Mary Catherine at her sister Martha and brother-in-law Charlie’s place overlooking the harbor; we were there with close friends Paul and Leslie Durgin. My laptop, as always, was at the ready.

On the lip of this summer day, the sky was an azure blue reflecting off the placid waters of the harbor, with scores of classic schooners and historic lobster boats on moorings with bows pointing gently to the inner harbor. Nothing was moving other than the seagulls above—a good time for reflection.

I’m stationary in the serenity—a welcome respite. The years haven’t been that peaceful for me. Years ago, I was diagnosed with Alzheimer’s, a disease that sadly has taken several family members. It’s a disease of loss—not only memory, but loss of self, loss of place, loss of independence.

It also has meant loss of driving. Years ago, doctors had me surrender my driver’s license to the Department of Motor Vehicles (and they were right). It was one of the saddest days of my life; I cried as I handed over the keys to my beloved Jeep.

Most people take driving for granted; just hop behind the wheel and off you go in freedom. Those in earlier stages of Alzheimer’s, like me, must learn the equivalent of a quarterback audible in life—a change of plays—to walk with some freedom. A pity party, I’ve learned, is just a party of one. So I’ve punted, and made a new friend, re-capturing some of my independence, thanks to Ubers, which take me where I want to go and when I want to go.

“You should start writing about this,” my buddy Paul told me. “Call it: ‘My life in an Uber!’”

And so I do before the radiant sun begins to dip into the outer harbor to be extinguished like a candle. That’s the next loss I must face: sundowning.

Sundowning in Alzheimer’s “refers to a state of confusion that occurs in the late afternoon and lasts into the night. Sundowning can cause various behaviors, such as confusion, anxiety, aggression or ignoring directions. Sundowning also can lead to pacing or wandering.”

I used to love sunsets; now I find myself fearing them. I constantly refer to my reminder notes that I draft throughout the day on my silver MacBook Pro laptop—my adjunct brain—dreading that I will forget. It’s been said, “When your heart speaks, take good notes.”

I do…

I took such notes a few years ago after a trip to Scottsdale, traveling with my wife and son Conor, visiting my wife’s family. We stayed for a week at the Scottsdale Hilton Resort, a great, relaxing hotel near the center of town. The late February weather was perfect—sunny, crystal clear, and in the low 80s with a light breeze, enough to whoosh away icy thoughts of winter at our home on Cape Cod.

It was time to leave Scottsdale. My wife, in a tearful frenzy of saying goodbye to family in the hotel lobby, asked me to order an Uber through my iPhone to Phoenix Sky Harbor International Airport for our fight back to Boston. Sky Harbor, one of the busiest in the country this time of year, is about a 20-minute ride south from the Hilton. The sun was now beginning to set. The demons of sundowning were beginning to stir.

Having someone like me set up an Uber at this time of day is akin to having a two-year old flag a cab. I did the best I could, fighting off the precursors of sundowning; confusion and lack of focus were starting to rage. After several attempts, I successfully reserved an Uber on my cellphone.

In short order, an Uber driver arrived at the Hilton; we were waiting in the lobby.

I went out alone to the car to confirm the ride—still confused, muddled. The Uber driver said loudly, “SLIVENSKI, PARTY OF SLIVENSKI?”

“YUP!” I replied. “WE’RE READY!”

I went back into the hotel to get Mary Catherine and Conor. I sat in the front of the Uber; they sat in the back seat.

The Uber driver took a sharp right out of the hotel and headed up the road. I was silent; Mary Catherine was talking to Conor.

Within minutes, Mary Catherine realized that we were headed the wrong way.

“This isn’t right!,” she told the driver. “This isn’t the way to Phoenix airport.”

"We’re heading to Scottsdale Airport, not Phoenix Airport!” the driver insisted.

“No we’re not!” Mary Catherine interjected, with urgency given our advancing flight time.

The driver, now upset, then turned to me and bellowed, as his cellphone was ringing madly: “ARE YOU SLIVENSKI?”

I paused, then sheepishly said, “No, I got confused...”

Mary Catherine and Conor started hurling curse words at me from the back seat, as the driver answered his phone. It was Slivenski calling from the Scottsdale Hilton, wondering where the hell his Uber driver was.

The driver, fully remorseful, explained the situation. Skivenski, apoplectic, slammed his phone and called another Uber.

I apologized profusely to the driver; he was somewhat angry.

Mary Catherine and Conor weren’t talking to me; Mary Catherine was just checking her watch. The American Airlines departure time was inching closer.

The phone rings again.

It’s the Scottsdale Hilton.

“Mr. O’Brien has left his laptop here; his name is on it,” an attendant at the front desk said. “I think it’s important; it says on the cover: ‘Call me if you find this.’”

The chill in the Uber now – even for Arizona –was sub-zero. The driver immediately turned his car around in a move that would have stunned Mario Andretti in his prime, and headed back to the Hilton to retrieve my laptop (my adjunct brain), then raced to Phoenix Sky Harbor Airport just in time.

Along the way I apologized yet again, sounding like a repentant schoolboy in the principal’s office. “I’m so sorry for screwing this up! It’s totally my fault. I’ve been diagnosed with Alzheimer’s, and my mind isn’t right at times.”

The driver listened, then paused, then replied, “I know. I could tell that you had Alzheimer’s. It’s in my family. I understand your journey. You take care!”

The Lord works in mysterious ways.

There have been more lapses, and continue to be. Like the time on the Outer Cape when I called for an Uber after having dinner at sunset with a writer friend from Manhattan. We talked about my dementia journey to the extent that it hollowed me out. The demons of sundowning attacked again.

On my Uber ride home, I got a text from son Conor asking me to pick up a few items at a local convenience store. I asked the driver in the blue Ford Uber to pull up and drop me off. “I’ll be right back,” I said, heading into the store. With the provisions in hand, I walked back out to the Uber, and hopped in the front seat of a white BMW, placed my groceries on the floor, my laptop on my lap, and secured my seatbelt. Then turned to the driver, looked him in the eye, and said, “We’re ready to go!”

There was that awkward pause. The driver hesitated, then said bluntly: “Are you sure you want to be here?”

In an instant, reading the man’s face, I realized I had gotten into the wrong car—blue is blue, and white is white: another sundowning moment. The gentleman in the white BMW could tell I was confused.

“I’m so sorry,” I said. “I have some medical issue. I feel terrible about this, terrible!”

“I know who you are, Greg. It’s OK…”

It does take a village in a small town on Cape Cod.

I smiled, thanked him, and then tried to find the blue Ford, though I didn’t remember if it was blue or a Ford. The Uber driver, having observed all this, was waving his hands at me like flags in high winds. “You alright?” he asked, knowing the answer to the question. I wasn’t alright, but was reassured as he drove me safely home.

My life in an Uber is a life-saver.