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Burden of illness often heaviest for caregivers

Tuesday, December 12, 2000

By Gary Rotstein, Post-Gazette Staff Writer

Untangling Alzheimer's
Last of three parts

The three men and seven women ignore the box of Kleenex placed between them on the table.


Special facilities offer top care, but at a too-high price for many

Part One:
Researchers race to beat scourge of aging

Part Two:
Alzheimer's patients follow different paths to a final debilitation


Rather than crying, they smile knowingly at one another's tales of spouses who transfer supermarket items from other shopping carts to their own, who mow the lawn daily, who mail their government tax payment in an envelope addressed to National Geographic.

Then the support group members, in their 50s and older, play a game of one-upmanship particular to husbands and wives caring daily for someone plagued by Alzheimer's disease. They discuss the common household items curiously misplaced because of their owners' restlessness and confusion.

A remote control might turn up in a piano, or eyeglasses in the freezer. Hearing aids and wallets and shirts appear everywhere except inside ears and pockets and drawers. And one relative put the hedge clippers in a place where they still haven't been found.

"How do you lose hedge clippers?" somebody wonders, and they all laugh, unable to top that item.

Bill and Diane Eisen formerly traveled to Shakespeare festivals together across the continent. Now she needs his help to play a simple card game in their Mt. Lebanon home. (Andy Starnes, Post-Gazette)

But the funny stories are overshadowed by more sobering tales about lifelong partners who gradually become strangers doing strange things.

Audrey Bett of Bethel Park tells how Dan, her gentle and responsible husband for 49 years, asked one day why she had become the one driving them everywhere instead of him.

"I said, 'You can't remember where you're going.' He just stopped in the doorway and said, 'I don't know what's happening to me,' and started crying." Dan, 73, told her through tears that he should be the one taking care of her in retirement, not the other way around.

The Betts' pleasure in morning walks and dining out are sandwiched around hours of Dan following Audrey from room to room in the split-level home. He worries when she's not in sight. She's exasperated by his hovering, feeling trapped, sometimes raising her voice when she knows she shouldn't.

The constant shadowing may be Audrey Bett's biggest burden now in caring for someone who is still in a mild-to-moderate stage of Alzheimer's, but other caregivers worry more about a spouse or parent wandering off, or the daily struggle of handling household tasks that once were shared.

Others despair from answering the same question repeated 10 times a day, or the inability to have a meaningful conversation with the person they've slept beside for half a century.

Such is the madness of caring for someone with Alzheimer's before that person takes an even deeper plunge into darkness, to a place where they can do nothing for themselves and might require institutionalization. Anticipating his own decline after diagnosis in 1994, former President Ronald Reagan called it "the journey that will lead me into the sunset of my life."

Alzheimer's home tips

Below are potential problems that affect persons with dementia and their caregivers at home, and some suggestions on how to deal with them:

WANDERING -- Place a stop sign on the door leading to the outside; camouflage the doorway with some kind of screen or curtain; install a dead bolt lock or alarm on door; enroll in Alzheimer's Association Safe Return program to help reunite the family if a person does get lost.

FALLS ON STAIRS -- Install hand-rails; add bright color to edge of each stair; illuminate stairs to eliminate shadows; remove objects from stairs.

CONFUSION GETTING AROUND -- Eliminate clutter and clear passageways; make sure furniture is stable to help provide support; widen doorways; limit access to unsafe areas such as basement, garage and junk drawers.

BATHROOM HAZARDS -- Install grab bars and nonskid mats; remove door locks; set temperature on hot water heater to 120 degrees or less; store toxic substances in hidden or locked area; put clear labels on the objects that are necessary to use.

KITCHEN AREAS -- Remove oven knobs and cover stove top with aluminum cover; use safety locks to store dangerous items; use pictures and labels to identify items safe to use; use small appliances with automatic shutoff switches.


Family caregivers for most of the estimated 4 million Alzheimer's patients in America join in on that difficult trip. At least 70 percent of those afflicted with Alzheimer's live at home, their disease wrenching their loved ones in every way imaginable.

Studies have suggested the strain affects caregivers' own physical health, in addition to the day-to-day stress of coping with the disease.

"It presents a very large challenge to a family to come to accept that this downhill course is pretty inevitable, and yet may be slow, and that the caregiver's needs almost certainly will increase as time goes on," said Dr. T. Franklin Williams, a University of Rochester geriatrician who formerly headed the National Institute on Aging.

"And yet, the person who's affected may still be functional in a number of ways and may still get some enjoyment out of things they enjoyed earlier," he noted. "It's a challenge to spot the things they still can get pleasure from."

Watching the decay

Bill Eisen has a Ph.D. from the Massachusetts Institute of Technology, a sizable income as president of the Crucible Research Center in Robinson and an impressive stone home in Mt. Lebanon.

All of that matters little to his quality of life at age 66. His wife, Diane, 63, has declined rapidly since being diagnosed with Alzheimer's two years ago. She can no longer help him care for their adult retarded son, Larry, who lives with them.

So Bill Eisen is handling an executive's job while making sure each morning his wife and son are clean and dressed. He prepares their breakfast before he's out the door to drop Larry at a volunteer work site. Evenings and weekends, Bill cooks and shops and handles the laundry.

At night, a typical activity might be playing the card game Fish, in which he has to help both his son and his wife, a former teacher with a master's degree in English. In essence, he's playing all three hands of a child's pastime.

"We are trying to live as normal as possible consistent with the things we like and are capable of doing -- it gets progressively harder to do that," said Bill, whose tension builds inside until he screams occasionally. It's his substitute for crying, as he has to address on toddler's terms the mate who once accompanied him to Shakespeare festivals.

"It's no longer enough to say, 'Take off your clothes,'" at the end of the day, he explained. "Now you have to say, 'OK, take off your shoes. OK, now take off your socks.'"

Their friends around Pittsburgh avoid contact with them because of Diane's difficulties, he said. She's frequently despondent and incoherent, with seemingly intelligent awareness of her shortcomings but difficulty expressing it. They still travel together occasionally, but she forgets where they're going and why.

The family's affluence provides Diane with a personal trainer to take her to a gym for workouts during the week, plus a home companion in the afternoons and two days a week of adult day care. Such help is more than most families can arrange, but hardly the life the couple envisioned enjoying in their 60s. Bill can't remember their last intelligent conversation, and he knows things will only get worse.

"The average person has no concept just how draining this thing is," said Bill, who bites off the words tersely in a voice of frustration rather than self-pity.

"To see someone who was vital, very intelligent, very sharp -- to see them decay in front of your eyes, to see someone who can't do anything and who doesn't want to do much. ... To try to deal with that in the person I love, who isn't the same person I knew five years ago. I keep reminding myself we've been married 42 years, with 40-plus years of a very good life."

The Eisens' latest bad news came last month, when a social worker from the Alzheimer's Association requested that Diane stop attending a support group for those in the early stages of the disease. Her symptoms had declined beyond those of other participants, and her negative ramblings were interfering with whatever benefit the others were getting.

A year earlier, Diane's entreaties to the Alzheimer's Association had helped create the special support group for people with the disease, which meets while their caregivers talk in a separate room nearby.

Passing the burdens down

Spouses aren't the only caregivers tortured by the effects of Alzheimer's.

Younger generations often take over the duties because one parent has died or become too frail to care for the other. That creates its own upheavals.

Since children of Alzheimer's patients are more likely still to be employed, the effects of the disease ripple through the workplace. The national Alzheimer's Association estimates that the disease costs U.S. businesses about $33 billion annually from caregivers' absenteeism, lost productivity and other factors. That's part of more than $100 billion a year the association says the disease costs the country, once medical, institutional and personal care requirements are tallied.

When the responsibility for care falls upon children, it can strain not just their time and labor, but the relations among siblings who view the disease and their obligations differently. Some children shy away from acknowledging their parents have the disease, which has a genetic component making offspring of patients more likely but hardly definite to get Alzheimer's.

Irene Vellella of Bellevue has been diagnosed in the early stage of the disease, while still living alone. Her daughter from her first marriage, Sharyn Konte, has been insistent that the family recognize the impact of the disease and take special steps because of it. Vellella's son from her second marriage, Jim Vellella, has been more hestitant to interfere in his mother's life.

Konte's suggestions have been so adamant that her mother has resented her as intrusive. Irene Vellella is willing to let her son and daughter-in-law help manage her finances and make sure she's taking medications, but discussion of her limitations has aggravated an already tense mother-daughter relationship.

"She becomes full of rage, quite verbally abusive with me, and it's to the point where I don't spend time alone with her," said Konte, who lives a few miles from her mother.

While Alzheimer's often is viewed as a memory disease, that aspect isn't necessarily what pains family members, said Richard Schulz, a psychologist and director of the University of Pittsburgh's Center for Social and Urban Research. The personalities of Alzheimer's patients can change for the worse with increased anxiety or irritability -- even threatening violence they never would have attempted before.

"The level of distress and the magnitude of impact is generally greater with dementia-related caregiving" than caring for patients with only physical maladies, Schulz said. "You not only have the usual activities of daily living that are impaired -- which you get also with physical illnesses -- but you get memory problems and disruptive behaviors on top of that. It's sort of a triple threat."

For 29-year-old Donald Helton of Elizabeth Township, his grandmother with severe dementia is generally good-natured but a burden in other ways. He's cared alone for his "Gram," Mary Gonzales, since his mother's death six years ago.

Until he put up a backyard fence and special locks on doors, he was repeatedly called home from work at a Value City store by neighbors who'd see Gonzales wandering along their rural road. Her warped instincts and early memories led her in the direction of her long-demolished home on Happy Hollow Road a mile away, until Helton or a neighbor scooped her up.

He's taken care of his worries while working by enrolling her in a special day care/health care program in McKeesport for low-income seniors with mental or physical frailties, but he's still sacrificed the normal social life of a young man. He says he doesn't regret it, even when she fights his efforts to bathe her or roots through the kitchen trash and spreads it across the floor.

"As time goes, she's not getting better -- I accept that," said the soft-spoken Helton, "but she's happy here, and as far as I can take care of her, I will."

Simple pleasures

Professionals who assist Alzheimer's-afflicted individuals say their condition's silver lining is they often can be contented in the moment, unaware of the despair that any rational person might feel, including their caregivers.

It doesn't bother Gonzales that the person she is talking to may just be someone in a photo, rather than someone real.

Perky but declining, Mary Lewellyn, 59, doesn't stew morosely about how the disease has ruined plans she and her husband had to create a new retirement lifestyle for themselves in Colorado Springs. She can still sing and dance as he plays the organ at home in Robinson.

The key to caring for Alzheimer's patients at home, experts say, is to keep them engaged in whatever pleasurable activities they still can handle. Musical interest and talent like Lewellyn's often continue long after other abilities fade.

Because they can still be physically active in the mild to moderate stages, daily exercise benefits many people with Alzheimer's. At other times, it's useful to give them simpler versions of whatever pursuits once interested them, such as an activity board with safe tools for a former handyman. A former housekeeper can contentedly fold the same laundry day after day.

President Reagan's biographer reported that he enjoyed scooping leaves out of his swimming pool. Once he completed the task, Secret Service agents accompanying him would surreptitiously add more and he'd keep going.

Caring for someone with Alzheimer's can become a benign con game like that, trying whatever works to ease anxieties. Professionals say there's no point in arguing with someone who can no longer tell the difference between who's alive and who's dead, or where they live.

"When we remind people that they can't remember, it gets them more anxious and upset and angry," said Elaine Dively, a social worker for the local Alzheimer's Association chapter. "It's been tried in the past to tell them all the facts -- your wife has died, your dog has died, they've sold your house -- and it just doesn't work."

Researchers nationally are testing new techniques to assist home caregivers, with Pitt's Schulz coordinating a five-year study that is concluding for the National Institute on Aging. Methods being tried in different cities include providing homes with special telephone recordings that distract the person with Alzheimer's and giving caregivers computerized access to instant advice on difficult situations.

Laura N. Gitlin, director of community and home care research at Thomas Jefferson University in Philadelphia, has compiled a list of simple home alterations or helpful hints that might benefit caregivers and their needy relatives. Some are things that smart individuals learn on their own -- like the shutoff switch Helton attached to his stove to keep "Gram" from using it, or the step-by-step instructions Bill Eisen has learned to give his wife.

"Caregivers need to understand that what they do is implement strategies on a daily basis without even knowing why they work," Gitlin said. "Each household is unique. What bothers a caregiver in one situation might not bother a caregiver in another household. What's manifested by one patient is not manifested by another."

Since no one can be certain when effective prevention or cure of Alzheimer's will arrive, Schulz said it's essential that caregivers get more help in the interim.

They're going to be stretched more than ever, he says, because the projections all show the numbers of old Alzheimer's victims growing and the number of middle-aged adults with time available to help them shrinking.

The future isn't something that today's caregivers think much about, however. What lies ahead for them can be too depressing, barring a research miracle. They expect the next generation of Alzheimer's families to get help, but they don't count on it for themselves.

"We just go from day to day," Audrey Bett says. "I don't carry around high hopes, but I don't think about how it's going to be, either. I'm a nervous wreck as it is."

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