REHOBOTH BEACH, Del. -- Exhausted, her arthritic knees throbbing, Barbara Bussler is ready to collapse. Some family vacation at the beach. While other huddle around the living room TV, she slips into bed.

Minutes later, she hears her 68-year-old husband quietly shuffle into the room. He bends down and tenderly kisses her on the cheek -- an unusual gesture for a man not normally given to displays of affection.

"You didn't have a good day today, did you, Rowland?" She whispers.

"No."

She asks why.

"I couldn't remember anything," he confesses. "Tomorrow will be better."

But Barbara knows tomorrow will not be better. It will be much the same, perhaps even worse.

He'll remember nothing of this conversation anymore than he'll remember where they keep the cereal bowls or when he needs to change his shirt.

Rowland has Alzheimer's Disease and, cell by cell, it's slowly destroying his brain. Memo-ries, the ability to perform routine tasks, to speak, to make judgments, to act appropriately in front of others -- all these things are gradually being lost.

But there is a mercy here. When he was first diagnosed three years ago, he denied it, raged against it, sank into a pit of depression and despair. Today, that pain is gone -- he often forgets that he forgets. He is oblivious to his own misfortune.

Not so for Barbara or the rest of the family. Their suffering has only gotten worse. And it's testing their limits of endurance, of family loyalty, of love and responsibility.

"This is torturing my mother. That's the worst part," says Paula Morris, the Busslers' youngest child, a 34-year-old mother of two. "Mom is high strung and emotional already. To pick up the phone and hear her bawling kills you. She's taking care of everyone -- still."

Caregivers stressed

Nationwide, an estimated 4 million Americans have Alzhei-mer's, about 10 percent of everyone age 65 and older. But by mid-century, that number is expected to rise to 16 million.

Studies show that about 75 percent of those afflicted with the disease live at home and are cared for by a family member, usually a spouse or an adult child. Caregivers like Barbara Bussler of Edgewater are the hidden victims of Alzheimer's -- research shows that they lead more stressful, depressed and potentially shorter lives because of their burden.

"They become isolated, stuck at home with the patient, and the rest of the family often doesn't understand," says Mary S. Mittelman, a researcher at New York University who has studied the lives of Alzheimer's caregivers. "The illness goes on and on and you end up wondering why you're caring for them. They don't seem to appreciate it anymore."

Barbara, 65, noticed something was wrong well before Rowland's diagnosis in 1999. He seemed to forget the simplest things. He got lost while delivering dry cleaning -- and wound up losing his part-time job.

But even family members weren't so sure anything was amiss. Rowland had always been withdrawn and taciturn by nature -- in contrast to his more bubbly and talkative wife -- but they couldn't see what Barbara lived with every day.

"It was overwhelming," she says. "I thought I was going crazy."

These days, the burden of caring for Rowland weighs more heavily than ever. Left on his own, she's certain he would just sit in the living room La-Z-Boy and stare blankly at the television set. For him to do much of anything else requires her explicit orders -- from eating to dressing to taking each of his eight prescription medications.

The instructions usually have to be repeated many times, and Rowland doesn't always care for the nagging and will tell her so.

"I get on his nerves," she admits.

It's a far cry from the Rowland Bussler she married, a handsome, handy, car-crazy high school kid from Suitland in Prince George's County. On their first date, he told her he was never getting married, but he broke his word on a freezing cold day, Jan. 29, 1955.

Rowland took a job managing a tire company and the couple raised three children in nearby Camp Springs. They moved to Edgewater 13 years ago when Rowland's health faltered from heart disease. Life slowed, but they saw a pleasant retirement on the horizon -- until the Alzheimer's.

"At first I was angry, shocked. I didn't want to believe it," she says. "It wasn't fair. It was overwhelming. I'd go in my bedroom and cry."

The last three years have been filled with mini-crises, such as the time she had to tell her husband he couldn't drive his beloved truck anymore. Or when he tried to fix a faucet leak and she came home to discover he had nearly flooded the house.

Rowland, after all, has been the consummate handyman, able to fix anything around the house. He'd spent a career working with things mechanical, selling tires, fixing cars, but those skills deserted him -- and Barbara could do nothing to help him.

Perhaps the toughest blow for Barbara came last spring when she had to quit her part-time job scheduling nurses at area nursing homes. She couldn't leave Rowland unattended anymore. She'd lost her last bit of personal freedom.

"I loved to work. I'm a people person," she says. "and I so enjoyed feeling productive."

Barbara has her own health problems -- chiefly asthma and heart disease in addition to her arthritis -- and she worries how she'll handle Rowland's worsening condition. Twice each month, she attends an Annapolis support group for Alzheimer's caregivers and the stories she hears are sometimes frightening.

Dealing with denial

At a recent meeting, a fellow Alzheimer's spouse spoke tearfully of how abusive her husband had become, yelling obscenities and sometimes throwing things at her. Yet her son still didn't believe anything was wrong and told his mother she was overreacting.

Sadly, such behavior -- both the husband's abuse and the son's denial -- is a common problem for Alzheimer's caregivers. It's not unusual for someone with the disease to go through a personality change, or to become easily agitated, or to lash out at others in frustration.

Learning how to deal with these unpleasant side effects isn't easy -- particularly when your closest relatives can't believe it's true.

"I think the hardest part is that you have to think, plan, organize and do for two people instead of just for yourself," says Lisa P. Gwyther, director of the Alzheimer's Family Support Group at Duke Medical Center in Durham, N.C. "You will have good days and bad days with the disease. Even though you can set up the most nurturing, predictable routine, anything can disrupt it."

Barbara considers herself relatively lucky. Her children and extended family have been supportive, and she has friends who'll listen to her complaints.

Her oldest daughter, Beth, moved in two years ago and has plans to build a house where they all can live. Rowland's younger brother Warren and his wife, Julia, often invite him to visit their small farm in Davidsonville.

"It's something I want to do, something I feel I should do," says Warren, 62. "He's my brother. I feel like Barbara's got all the load on her she can handle."

The family has also tried to weather their problems with laughter and camaraderie. Their recent vacation in Rehoboth was one example. Rowland wore one of his favorite T-shirts for the trip -- it reads, "Been There. Done That. Can't Remem-ber."

Even now, Rowland can still recall his youth. His oldest sister, Cecilia, put together a scrapbook to remind him of his childhood. He's developed a recent fondness for horses and recalls his work as a stable boy five decades ago.

But on his worst days, even those early memories can prove elusive. On those days, his eyes seem vacant and he bristles at his wife's suggestions. He may soil himself and be completely unaware.

"My mother has more friends than anyone I know, but when it's a matter of taking care of him here and now, she's alone. There's no escape," says Beth, 44, who works full-time selling electronic components. "She's responsible for everything, everything."

Research has shown that the stage Rowland is entering -- the middle period of Alzheimer's -- is the hardest on caregivers. Counseling, support groups and other forms of outside assistance are vital to keeping family caregivers going.

Yet those kind of services are not always widely available. Neither Medicare nor most private health insurers pay for nursing care for Alzheimer's patients. Even subsidized services -- when they're available -- are useless to caregivers who don't know they exist.

"Most social and health programs are geared toward the needs of someone with the disease, not to the caregiver," says Lynn Feinberg of the Family Caregiver Alliance, a nonprofit San Francisco-based agency. "That's a challenge to a society that is headed to a major crisis as the baby boomers get older."

According to the Alzheimer's Association, a private, non-profit advocacy group, the costs of the disease to the family caregivers (and to their employers in lost productivity) is substantial -- about $36.5 billion this year.

Cass Naugle, executive director of the association's Greater Maryland chapter, says help isn't always available for caregiving families who either can't afford private nursing or aren't poor enough to qualify for government help.

"It's the relentlessness of the need, the 24-hours-a-day burden that people face," she says. "I'm reminded of what a man who was taking care of his wife told me once: 'It's not the mountains ahead that are the challenge, it's the grains of sand in my shoes day after day.' "

That's exactly how Barbara Bussler feels -- only the grains of sand sometimes seem more like boulders. Or as, Barbara's 14-year-old granddaughter told her recently, "Grandma, you have a big job."

Still, friends think Barbara has done well under the circumstances. Somehow, family members say, she draws from her reserves when things seem to be at their worst.

"She's a strong person," says Marilyn Harrison, a nurse and volunteer who leads Barbara's support group. "Somehow, somewhere she has to find the time for herself so that she doesn't ruin herself physically and emotionally."

The only thing Barbara is certain about is that she plans to keep taking care of her husband as long as she's able. She shies away even from day-care programs. She says she'd feel too guilty to leave Rowland with strangers.

"It's more than an obligation," she says, the tears welling in her eyes.

"It's what God wants you to do. It's devastating, but I need to do this. I just couldn't even think about giving the job to somebody else."

Resources

The Alzheimer's Association, www.alz.org, 800-272-3900. (To reach the Greater Maryland chapter, which covers Central Maryland, the Eastern Shore and Western Maryland, call 800-443-2273).

The Alzheimer's Disease Education and Referral Service, www.alzheimers. org, 800-438-4380.

The Alzheimer Research Forum, www.alzforum.org

Watch for the signs

Not certain whether a loved one might have the disease? The Alzheimer's Association offers these warning signs of dementia to help families know when they need to talk to a doctor and seek appropriate treatment:

* Memory loss, particularly forgetting recently learned information.

* Difficulty performing familiar tasks. Often, these are routines we don't normally think about, such as the steps to preparing a meal.

* Problems with language, perhaps forgetting simple words.

* Disorientation about time and place.

* Poor or decreased judgment. Giving large amounts of money to telemarketers is, unfortunately, a common example.

* Problems with abstract thinking, such as balancing a checkbook.

* Misplacing things.

* Changes in mood or behavior. Rapid mood swings for no apparent reason, for example.

* Changes in personality. Confusion, paranoia, fearfulness are common examples.

* Loss of initiative. Perhaps sleeping more than usual, watching TV for hours, avoiding social situations or housework.

-- Peter Jensen