How one family copes with Alzheimers

Gigi Fielder, an active, vital 47-year-old, was talking to a friend at an open house in 1993 and couldn't remember the title of her husband John's new book: "To Walk in Wilderness."

"I thought it was apathy. It happens to marriages, I guess. We'd been married for 14 years," said John Fielder, the renowned nature photographer.

It was no one-time slip. It was an indication, not an aberration.

"For the next five years there was this change in initiative. She kind of lost her initiative to be proactive, began forgetting birthdays, then short-term memory loss," said Fielder, 53.

It went on like that until, during a family vacation, Gigi got lost and couldn't remember how to use her cell phone after she dropped John off at Chicago's O'Hare Airport and headed back to her parents' home. A 20-minute drive became a four-hour ordeal.

When Gigi returned to Denver she underwent cognitive testing and two doctors concurred on a diagnosis: early-onset Alzheimer's disease.

"That was a milestone for our family. It took the guesswork out of what was wrong with her. It wasn't apathy, it wasn't contentiousness in our family. It was a sickness and we were going to have to deal with it," Fielder said.

Early-onset Alzheimer's (diagnosed under age 65) accounts for about 10 percent of diagnosed cases of the disease, according to the Alzheimer's Association. Approximately 4 million people have Alzheimer's.

Gigi and John's children were teenagers: a son, J.T., now 24, was getting ready for college; daughters Ashley and Katy, now 21 and 18, were in high school and middle school.

"Effectively, I had to take over the roles of mother and father," Fielder said.

Fielder was in the midst of an enormous project released in 1999: a book that retraced the steps of famed photographer William Henry Jackson.

"I was gone 17 days a month, and Gigi was at home not able to function as a homemaker. It affected the kids doing their things after school and on the weekends. The house wasn't getting run, the checks weren't getting written. It was chaos. I don't know how we pulled it off, but we did," he said.

Gigi's condition deteriorated rapidly. Within six months of her diagnosis, she could no longer drive a car. Within 18 months, she was totally dependent on her family and caregivers, including family friend, artist Ford McClave.

Determined to keep Gigi at home, Fielder hired a full-time caregiver in February 1999.

"The bottom line was it took teamwork," he said. "We found a caretaker to live in, and in the evening we shared dinner-making and shared time with Mom.

"Her personality has proven to be a benefit to all of us. She's always been very easygoing. Alzheimer's victims sometimes become very combative. Gigi's the sweetest soul.

"You have to divorce yourself from the emotion of losing part of that person you've been with for 28 years. For the kids, I can't imagine what it's like, having that happen to your mother. I wish I could say it's been perfect, but it hasn't.

"Once the diagnosis was made, these kids changed. They grew up very quickly. I saw in them a resolve and compassion that I had never seen. All of a sudden they became adults."

Gigi's disease stole her ability to communicate with words three years ago. The family suspects that at least two mini-strokes sapped some of her strength, although she still can take regular walks.

"She still knows us all, still can laugh and respond," said Fielder. "She communicates through hugs and kisses. She'll watch TV, see something funny in a movie and laugh. She still picks up a lot of stimulus in her life.

Fielder, who speaks to thousands of people every year on environment-related topics, went public about Gigi's illness to raise awareness and money.

"Four million people have it now, and it will be 12 million in another 20 to 30 years; one in 10 have early-onset, get it in their 40s and 50s.

"One reason I'm speaking is to warn people of the effect, not only emotionally but financially, on families. The expense is tremendous. I've been able to afford caregivers, but $40,000 to $50,000 a year is beyond the means of most people.

"As challenging as health care is in our country right now, this one may be the worst of all, not only because of the cost of medically managing someone with Alzheimer's as you get into the later stages with infections and pneumonia. You have the cost of caring for people who may be alive as long as 20 years. How does our society deal with that? That's why finding a cure is critical."