March 13, 2010

Couple dealing with illness turns the tide with joyful journey

— To most travelers out there on the open road, Andi and Jeff Bartlett look like the typical middle-aged couple living the American dream.

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Photo courtesy of Andrea Bartlett: Andrea and Jeff Bartlett take in the vista at Guadalupe Peak, elevation 8,749 feet, in Texas.

Since they fired up HaRVey, their 24-foot recreational vehicle, and pulled out of their South Portland driveway last June, the Bartletts have meandered as far south as Arizona and as far north as Alaska in their quest to traverse every one of the continental United States in a single year.

But look a little more closely and you'll see that this is more than just the quintessential road trip.

It's a race against time.

''Can you imagine him sitting home all by himself waiting for me to come home each day -- and that being the high point of the day?'' Andi, 56, said in a recent cell phone call from Joshua Tree National Park in southern California. ''That's no way to live.''

Jeff, at the not-so-old age of 58, has ''younger-onset'' Alzheimer's disease, the term used for those who begin showing symptoms before the age of 65.

He can converse with ease on a cell phone, yet he can't remember how to read. He can walk on a beach, but he can't remember how to use his beloved metal detector. He can still strap on a backpack and go hiking, although he moves at about half his former pace and has trouble processing simple directions like ''go left'' or ''bear right.''

It began three years ago as a mystery -- unexpected lapses in memory that seemed like no big deal at first. But then it started happening again and again and again

There was the day Jeff was walking down the hall at The Woodlands Club in Falmouth, where he worked as a manager, and suddenly found himself frozen in his tracks, trapped inside a mental fog.

''I couldn't remember where I was going or what I was doing,'' Jeff recalled. ''It happens to everyone, I know, but this was a little more serious.''

Then there was the Mother's Day that, much to Andi's dismay, Jeff just plain forgot. And the Christmas Day when it became painfully apparent to his wife and four grown children that Jeff hadn't remembered to buy anyone gifts.

The steady erosion of his short-term memory eventually cost Jeff his job. But even then, his relatively young age and lack of any family history of Alzheimer's disease left everyone wondering what exactly was wrong.

''It was difficult because every time we went to a doctor, they didn't know what it was,'' Jeff said. ''They'd just say. 'This isn't normal this isn't normal.' ''

Finally in late 2006, after all the PET scans, MRIs and three lumbar punctures, a neurologist administered a six-hour series of cognitive tests that revealed the problem. The doctor assured Andi that her husband could well live for another 20 years or so, although he couldn't guarantee what those years -- particularly the later ones -- would be like.

That's when Andi decided to hit the reset button.

''There's no time like the present,'' she said. ''I wanted to do things he enjoys -- and he's always enjoyed traveling.''

Last spring, amid raised eyebrows from even some family members, Andi asked for and received a one-year leave of absence from her job as an educational technician at South Portland High School.

Then she sold some stock that she and Jeff owned -- their retirement nest egg -- and bought the recreational vehicle. When Jeff had trouble remembering the everyday acronym ''RV,'' they christened the vehicle ''HaRVey'' and, lo and behold, the name somehow took root. Ditto for the on-board GPS, which now goes by ''Harriet.''

They departed on June 19. Andi's journal, which someday will pick up where memory leaves off, is a vivid testimony to all she and Jeff can still share. Rarely does it even mention his disease.

From New Mexico: At dusk at Carlsbad Caverns we witnessed millions of bats flying out of their cave in search of insects. We stopped at Roswell where UFOs have landed, too bad we missed them.

From Texas: We stayed in the Chisos Mountains where the desert was still in bloom. Our last night, we were treated to a lightning show that lasted over an hour. It was amazing to see those bolts repeatedly cross the sky.

From South Dakota, Wyoming and Montana: We found Mount Rushmore, Heart Mountain Japanese Internment Camp and Little Big Horn Battlefield touching; one filled us with patriotic pride and the latter two with remorse and shame.

From Oregon: The Oregon coast was more beautiful than I had imagined with sand dunes, cliffs, big waves, lighthouses and tidal pools. As I cross off places on my wish list, I find that I add even more to it. America is truly beautiful.

The trip, of course, has had its occasional glitches.

Emptying HaRVey's ''black water'' sewage tank at one stop ended, shall we say, disastrously for Andi when the drain hose prematurely came uncoupled. (I was so not happy. I never told Jeff.)

And their strategy for keeping Andi in Jeff's sight at all times -- she wears vivid colors in crowded places -- worked like a charm until they went to a football game in Denver and loyal Broncos fans all showed up wearing bright orange.

Still, they have no regrets. They've reconnected with long-lost friends, including four of Jeff's old fraternity brothers. They've watched the Seattle Mariners host the Boston Red Sox. They've pitched a tent on the deck of a ferry to Alaska, weighing it down with bottles of laundry detergent when the winds came up.

And with each passing mile, they set an important example for others -- including an estimated 37,000 Mainers -- who grapple each day with Alzheimer's disease or other forms of dementia.

''I think what Andi and Jeff are doing is absolutely wonderful,'' said Peg Gagnon, marketing and development coordinator for the Alzheimer's Association Maine Chapter, which operates a help line for Alzheimer's patients and their families at (800) 272-3900.

''Too often when people get this diagnosis they begin the dying process,'' Gagnon said, ''rather than realizing there's still life to live -- even with the disease.''

Of course, there will be more life to live for the Bartletts even after they return home sometime next year and try to pick up where they left off. Their biggest worry is money: Andi carefully logs all of their expenses as they travel from state to state, but she's afraid to add it all up.

''It's horrible,'' she said. ''If we didn't have to worry about finances, it would be so much better.''

Still, when they sit down to Thanksgiving dinner today at the home of Andi's sister in Arizona, surrounded by their four kids who headed west for the occasion, they will pause to give thanks for things far more important than the checking account balance.

Jeff is thankful that his prognosis is measured in years, not months or weeks.

Despite the approaching shadows, he said, ''I'm still here. It is what it is.''

And Andi?

It gets simpler with each passing day.

''I'm thankful we're together,'' she said.

Columnist Bill Nemitz can be contacted at 791-6323 or at:

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