Growing Uncertainties

By early 1994, as Alzheimer’s tightened its embrace on his Aunt Irene Peterson, Larry Lindgren realized the time had come to make changes.

He moved Irene into her identical twin Ilene Eddy’s half of the two-story Long Beach duplex the sisters have shared since the mid-’70s. And he hired a part-time home health aide to help care for Irene.

About six months after the move, relatives discovered that Ilene was also beginning to have serious memory problems.

The occasion was a family gathering at the Bellflower home of the twins’ sister-in-law. Ilene was still driving her own car, and she and Irene were expected at 2 in the afternoon. They arrived five hours late--in a taxi.

Ilene had driven to her sister-in-law’s house countless times over the years, but this time she had become lost. She finally called a cab in nearby Norwalk.

In early 1996, after hearing about the John Douglas French Center for Alzheimer’s Disease in Los Alamitos, Lindgren enrolled Ilene and Irene in the center’s day program for adults.

Knowing Ilene’s aversion to the term “Alzheimer’s disease,” Lindgren says, “we couched it in terms of something to do, not an Alzheimer’s center.”

Ilene’s response, he says, “was sort of: ‘We don’t need it, but if you insist we’ll go.’ ”

The French Center program, which costs $36 a day, offers activities for 25 men and women in the early stage of a dementing illness. Activities include exercise, art, sing-alongs, dances, outings and visits by entertainers and preschoolers.

They call it “The Club.”

“Ours is more like a senior center in a protected environment with supervised activities for men and women with dementing illnesses,” says spokeswoman Diana Eastman.

More than 70% of people with Alzheimer’s disease live at home, according to the Alzheimer’s Assn., with the majority of home care provided by family and friends. The key to any day program, Eastman says, “is to provide stimulation and social engagement with peers that you can’t get with a home setting.”

Recalling Ilene and Irene’s participation in the day program, Eastman says they “were always modest, very prim and proper, and had a very strong sense of independence and self-sufficiency.” And, befitting Ilene’s new role as protector of Irene, “Ilene was dominant from the start.”

Around the time the twins began attending the French Center, Lindgren and the twins’ longtime property manager, Gus Modaffari, made a troubling discovery: Ilene, like many elderly Americans, was being scammed by questionable charity solicitors.

“One guy had, like, nine charities, and he just kept working them for larger and larger amounts,” Lindgren says.

Bottom line:

“They were taken to the cleaners,” Modaffari says. “Charities would come in and tell them, ‘We’d like you to give,’ and Ilene--oh, she’s a peach of a person--would give them a check. She’d write checks for small amounts, and they’d change the amounts.”

When the twins’ bank notified Modaffari that a $17.50 check Ilene had written had been altered to read $1,750, he says, “we stopped their account immediately.”

Lindgren and Modaffari agreed something had to be done to protect the women.

In May 1996, a conservatorship was established for Ilene and Irene, with Modaffari the court-appointed conservator of the twins’ estate and Lindgren conservator of their person.

Although Ilene continued to attend the day program at the French Center throughout 1996, Irene’s attendance was sporadic. When she was there, Irene had difficulty following directions and depended on Ilene to help her.

“It was a strain on Ilene to have Irene there because she couldn’t focus on the activities,” Eastman says. “She was very protective of Irene’s needs.”

By the end of the year, only Ilene attended.

Three days a week, home health aide Teresita Baltazar and Irene drop Ilene off at the center late in the morning and pick her up late in the afternoon.

Sundays, when Baltazar has the day off, either the Lindgrens or the twins’ sister-in-law, Edna Mae Lindgren, visit and take the twins out to dinner.

Modaffari, who drops in to check on the women, also has dinner with them twice a month and drives them to and from their monthly samba club card game.

Baltazar takes the twins for walks around the neighborhood, but they spend much of their day watching TV--Ilene in her recliner, Irene in hers.

Ilene and Irene turn in about 10 o’clock, watching the TV news in the queen-sized bed they share.

And for the next 10 hours or so, Ilene is in charge, an alarm on their bedroom door set to warn her should Irene decide to wander.

There have been no problems, but that doesn’t keep friends and relatives from worrying.

“You got to worry,” Modaffari says.

Those close to the twins realize that a greater level of care will be needed soon.

“I guess for the last six to eight months Irene has--how can I say this?--she’s descended another notch on the disease taking its toll,” Lindgren says. “At the same time, Ilene’s moments of good memory and everything per hour are getting less and less.”

Lindgren has been giving a lot of thought to Ilene and Irene’s future.

A year ago, he and Modaffari became concerned that Irene might fall down the stairs of their two-story duplex.

Both men agreed it would be in the twins’ best interest if they sold the duplex and bought a single-story house for the twins or moved them into one of the single-story rental units they own.

But when Modaffari mentioned it to Ilene, she grew irate. Turning to her twin, she said, “Irene, do you understand that they’re trying to put us out on the street?”

Lindgren and Modaffari abandoned the idea.

Recently, Lindgren and Modaffari have begun talking about a contingency plan to have 24-hour live-in care should Ilene reach a point where she is no longer able to take care of Irene at night.

“It could happen suddenly; it may happen slowly, but we need to have it set up so that we could have 24-hour coverage,” he says.

If Ilene progresses to the same stage of Alzheimer’s that Irene faces, Lindgren says, they may be better off at a full-care facility such as the one offered at the French Center in Los Alamitos or one nearer his home in Camarillo.

“Right now it wouldn’t make any difference to Irene where she is,” Lindgren says. “But it makes a huge difference to Ilene, and until things progress a little further, we don’t want to shatter her world and try and put her someplace where she doesn’t want to be even if it would be better for her.”

For now, the current arrangement with an eight-hour-a-day home health aide, six days a week, is working out.

Meanwhile, family and friends enjoy the time they have with the sisters.

It is the last Sunday in January, and the family has gotten together to celebrate the twins’ 87th birthday.

Lindgren and his wife, Janet, his Aunt Edna Mae and her daughter, Joann, take the twins out to dinner before a party at Edna Mae’s ‘50s-vintage tract home in Bellflower.

“We had a good dinner,” Ilene reports, climbing out of the car and joking that “we’re celebrating our 21st birthday, so we can vote now.”

The twins wear matching pink-carnation corsages on their matching blue-print dresses. As they head into the house, Ilene says, “I thank God every day we have the health we have.”

As the women disappear to freshen up, Lindgren strings up a large Happy Birthday banner and balloons in the dining room.

When they return, Ilene sits down at the table and tells Irene to sit in the chair next to her.

“Oh, wonderful!” Irene says with a smile.

“OK, you’ve got to put the hat on now, though,” Lindgren tells them. He and his wife crown the twins’ white hair with pointed party hats. “In a minute we’ll light the candles and sing,” he says.

As a photographer takes their pictures, Ilene looks at the camera and smiles. Irene is distracted.

“Irene! He’s taking pictures,” Ilene says. “You have to look at the camera.”

“I’m looking at the camera.” responds Irene, looking instead at the birthday cake that has been placed in front of them.

“Lovely!” she exclaims.

Someone asks Ilene if she remembers having birthday parties as a child.

“There were 10 children in the family,” she says, “but that was my mother’s big day, so we always had birthday parties. She always had a birthday cake, and in those days they didn’t buy the cakes.”

Irene, as is her habit since Alzheimer’s began its irreversible assault on her brain, has begun whistling. Ilene, caught up in the festive spirit of their 87th birthday, happily continues.

“Really,” she says, “we were raised on a farm back in Iowa, and we had a lot of fun and enjoyed life. And we got along good. We had a happy childhood.”

Before Ilene and Irene open their presents, Janet Lindgren mentions that Irene is the older of the twins. Was it by two minutes? she asks Ilene.

Ilene responds with a joke she undoubtedly has told many times, but one that is now weighted with irony.

“I was there,” she says with a grin, “but I don’t remember.”

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ALZHEIMER’S FACTS

* Good medical and social management can ease the burdens of Alzheimer’s on patient and family. Some health-care decisions can be made while the patient has the mental capacity to participate.

* Physical exercise, social activity and proper nutrition are important in the life of a person with Alzheimer’s. Calm and well-structured environment may help the afflicted person continue to function.

* In some cases, medication can lessen symptoms such as agitation and anxiety and can improve sleep and participation in activities. There are two FDA-approved drug treatments for Alzheimer’s disease--tacrine and donepezil hydrochloride.

* A person with Alzheimer’s will eventually require 24-hour care, including assistance with activities such as eating, grooming and toileting.

* More than seven of 10 people with Alzheimer’s disease live at home. Almost 75% of the home care is provided by family and friends. The remainder is paid care, costing an average of $12,500 per year. Families pay almost all of that out of pocket.

* Half of all nursing home residents have Alzheimer’s disease or a related disorder. Average cost for nursing home care is $42,000 per year but can exceed $70,000 in some areas of country.

* Financing of care--including costs of diagnosis, treatment, nursing-home care and formal or paid care--in the United States is estimated to be at least $100 billion each year. The bulk of the cost is paid for by patients and their families.

More Information

The Alzheimer’s Assn. is a national voluntary health organization dedicated to research for the causes, treatments, cures and prevention of Alzheimer’s disease. It provides education and support services to people with Alzheimer’s, their families and caregivers.

Information: (800) 272-3900 and https://www.alz.org

Source: Alzheimer’s Assn.