Confronting Alzheimer's

Often one son or daughter shoulders the heaviest burden, and that breeds resentment. In 2004, Pinky Holloway left her job in Chicago to move home to Atlanta. She wanted to care for her mother, Essie, now 78, who had been diagnosed with Alzheimer's a year earlier and was then living in a nursing home. Holloway, 56, doesn't regret her decision even though she says that looking after her mother is a "24-hour-a-day job." At first, it bothered her that she wasn't getting as much help as she wanted from her siblings. "After a while," she says, "I had to start thinking in terms of 'I can change myself but I can't change anyone else.' For whatever reason, they have chosen not to participate as much. I cannot change that." Coming to that realization helps, she says. "I'm thinking they'll do it when they're ready."

But in many families, that's unlikely. As the disease progresses, caretaking becomes even more difficult. The common public impression of Alzheimer's and other dementias is that they are characterized by a slow, quiet slide into permanent forgetfulness. In fact, it's rarely a gentle fade to black. Changes can be so profound that it often seems as if an alien spirit has invaded the body. Patients frequently act out—often because of frustration with their limitations. Caregivers, the people most likely to be nearby, are also the most common victims.

Financial issues can aggravate an already stressful situation. In almost every family, money disputes eventually surface. Siblings frequently disagree over how a parent's assets should be used. When a mother's or father's bank account runs low, the next generation has to kick in, and not everyone is equally willing or able.

It's not always a parent who re-quires help; some boomers find themselves looking after spouses. When Darlene Jordan's husband, Charles, 57, was diagnosed with Alzheimer's six years ago, her old life vanished. Early-onset cases like his are not as common as the dementia that appears in old age, but the Alzheimer's Association estimates that approximately 500,000 Americans under 65 fall into this category. Like the Jordans, many of these patients still have children living at home. Darlene, 49, says their daughter, Lindsey, 13, initially tried to help. But about three years ago, "she got really scared because he yelled at her, and she thought he was going to hit her." Jordan suspects that her husband was upset that his child had to dress him and get him to the shower. Now Lindsey sticks to simpler tasks, like bringing her father a snack.

Charles Jordan's behavior has continued to deteriorate, his wife says. Early on, he compulsively stuffed batteries in his pockets. Now he's becoming increasingly aggressive. A few weeks ago he charged at the female driver of the van taking him to adult day care when she got out to help him. The driver ran into the Jordans' house screaming. Charles finally agreed to get into the van but then he started hitting another patient. Darlene is so frightened that at night, she and Lindsey sleep in the same room with the door locked to keep her husband out. "I still love him," she says, but she knows that he's no longer "the person I married and had all those hopes and dreams with. Once you accept that, it makes it a little easier."

Acceptance may make the day-to-day challenges easier, but caregivers are also fighting back—through political activism. Entrepreneur John Osher, 60, decided to make Alzheimer's his crusade after his 87-year-old father, Daniel, a neurosurgeon, died of the disease in 2003. "He was like a 5-year-old," Osher says. "He had deteriorated so much." Osher began working with the Alzheimer's Association, hunting major donors. Funding research now makes economic sense, Osher says. "It's the most expensive disease" for families, he says. "It's so many years, and there's so much care involved. The fact that it's going to cost us so much down the road is one of the biggest reasons we need more funding." It's estimated that by 2030, Alzheimer's will cost Medicare $400 billion, almost as much as the entire current Medicare budget.