An Extraordinary Woman in a Shrinking World

Ina Savage was walking in Roland Park with members of her new club when she spotted something glittery in the grass. It was a child’s toy, discarded in an overgrown schoolyard. Savage reached down and, in a grand sweep, lifted skyward a magic wand.

“I wish for a new brain,” she exclaimed.

Members of the Morning Out Club nodded and laughed.

“Don’t we all!” someone said.

Like social clubs focused on books or investing, the group Savage belongs to formed because its members have something in common: They expect to die in their prime from an illness that usually strikes the old. Their brains are decaying.

Every Wednesday from 10 a.m. to 2 p.m., on a walk to see the tulips, a trip to the zoo, perhaps over a meal in a favorite restaurant, these club members, in their 50s and 60s, find comfort in each other. The club is a refuge from the terror of Alzheimer’s disease, a place to mourn what is lost and to prepare for what is to come.

At 56, Ina Savage cuts a striking figure in olive-green cuffed corduroy slacks and a maroon turtleneck sweater, a stylish purse on her shoulder, a scarf around her neck.

And when she recounts how civilization began in ancient Iraq at the Tigris and Euphrates rivers or summarizes the players in the Crusades or the theme of a classic novel, she displays a mind enriched by books and study--a mind that remains extraordinary even as it fades.

Over coffee at the club, Savage carries the room the way she once carried the conversation at embassy parties. She brings bits of her life for all to see: linguist, adventurer, wife of an American spy, mother to three daughters, teacher, devotee of history, repository of tales and a great dancer.

“You don’t learn to samba,” she advises her friends one day, breaking into the dance of her native Brazil. “You just samba.”

For Savage, there is comfort in the past. The present, confusion. The future, uncertainty.

The former diplomat’s wife shakes her head, thinking of the busy schedule she once kept.

In Rio, Paris and Buenos Aires, she socialized. Across continents, she moved. And always, she ran the house. Her mind kept track of children’s sports matches, choir lessons, dentist appointments. Never did she write down a telephone number or an address.

Now she can no longer drive. And she can’t make her own appointments for a haircut or the dentist because she never knows when someone can take her.

“It is not that they are selfish or obdurate. It is that they are busy. Spies, spies! Spies don’t have a schedule.”

Everybody laughs; Savage, the loudest. Her husband, Peter, worked for the CIA.

*

Ina Savage says she feels lucky that she can acknowledge her illness. She has even gone on national television to describe “what it’s like to play the game of life with only half a deck.”

In recent months, a much-heralded experimental drug, Aricept, has improved her vision, her focus, even her ability to dial a phone number. Alzheimer’s in younger people such as Savage usually stems from a flawed gene and is harder to diagnose. Its progress may be more rapid.

Walking is Savage’s chief delight.

Most mornings, her next-door neighbor, Debbie Jenck, comes over and the two walk their “generic black dogs” (Savage’s term) together.

Jenck was among the first to see troublesome signs in Savage’s behavior. When their families vacationed together at the beach one summer, Savage discovered that she had forgotten her suitcase--and created a furor. She insisted on returning home.

Savage recognized changes in her abilities, too, but was relieved when a general practitioner found nothing wrong. It was then that she began to explore ways to mitigate her forgetfulness. She began making lists, writing down names and numbers. She hid her disability even from herself. “I didn’t admit it,” she says.

Neither did other family members. “Mom was the glue,” says Serena, the oldest daughter, who was away at college in those years.

But telltale signs emerged: Savage’s daughters noticed she was less creative in the kitchen, sticking to dishes she knew well. At the grocer’s, she relied on her youngest, Pauline, to remind her what staples they needed and to write out the check. When someone left the kitchen in disarray, Savage exploded.

*

The pretensions of normalcy began to crumble when she began forgetting to pick up Pauline from school on time. The eighth-grader had to call home each day.

Savage complained about preparing lesson plans for her teaching job at Roland Park Middle School.

In the winter of 1991, Savage got lost driving to the family vacation home in upstate New York, a place she’d been going to for years. She stopped to ask directions, but couldn’t follow them. Finally she asked a stranger in a bar to get into her car and take her home.

The next year, when Ina was fired from her teaching job, her shocked husband had it out with the principal. Peter won a reprieve until the semester break, but he could not persuade the principal to keep Ina. Her behavior seemed uncharacteristic.

Daughter Lina worried about going away to college and quit after a year and a half. Upon her return, she found her grandmother, whom Ina cared for, with a dangerously swollen arm. “We have to go to the doctor today,” she said. Lina was deeply troubled that her mother hadn’t noticed the arm. “This is not OK,” Lina said.

“What do you mean?” her father asked them.

Pauline blurted it all out--how frightened she was to drive with her mother, how she covered for her.

The whole family accompanied Savage to the doctor, but the visit provided no answers. Without a baseline to work from, the neurologist could draw no conclusion from the picture of Savage’s brain. He advised the family to keep track of her symptoms and come back in a year for a second scan. Savage was 52.

In 1994, a year after the initial evaluation, a second scan confirmed Savage’s dementia. The official diagnosis was made in November 1995. It was estimated she would become totally dependent in seven to 10 years.

*

Savage has lost her fine motor skills, and quit wearing stockings or lipstick. With her ability to judge distances sometimes blocked, she gets lost in her own room.

She is also losing her judgment--she hugs the clerk in the Giant or approaches people saying, “I want a kiss.”

The oldest, Serena, 27, an independent movie producer, is documenting her mother’s illness. In a plastic bag she keeps artifacts that reveal Savage’s increasingly illegible handwriting and confusion about phone numbers.

Lina, 25, a nurse, types long memos on her mother’s condition and required medication, and takes the lead on the phone with doctors.

Peter reads to her, but by her responses he knows she no longer gleans the substance.

Ina’s oft-repeated wish for a new brain has become as undesirable as it is unlikely. Wisdom came in the form of a dream. She was finally getting a new brain.

But as the doctor took the brain from its container and moved toward the operating table, Savage had a revelation. “I started thinking about whose memories I might have,” Savage tells the club. “And I thought, ‘What if I got the brain of a dirty old man?’ ”

Walking her dog that morning, passing the homes of friends, the familiar streets where her daughters learned to ride bikes, Savage rejoices in her memories. “I love my life,” she says.

Living With Alzheimer’s

The Los Angeles Alzheimer’s Assn. is sponsoring a two-day conference for family members and health professionals. “Living With Alzheimer’s: Making a Difference, Shaping the Future” will be held Friday and Saturday at the Pasadena Conference Center, 300 E. Green St. Admission is $65 for family members and $179 for professionals in advance; $80 and $200 at the door.

The conference will cover an array of issues including current research, caregiver challenges, ethics and medications. Free on-site respite care for 20 is available on both days.

For information, call (626) 449-4356.