Overburdened by the amount of care he had to give his wife, who was suffering from Alzheimer's disease, Jim Segel felt like he had been sent to prison. He even seriously considered killing himself.
Then he found out that others caring for victims of the disease had even more difficult lives.
"I felt ashamed," said Segel, 75, an Encino resident and one of the founding members of the Los Angeles chapter of the Alzheimer's Assn.
When Segel's wife, Viola, was diagnosed with the disease 15 years ago, he had to cope with her ever-worsening condition. Eventually, she could no longer drive a car or handle the bookkeeping for his boat-sales business in Marina del Rey. Forgetfulness turned into confusion, then into erratic behavior and severe agitation.
Segel would sometimes ask his customers what they knew about the disease. "What's that? Old-timers disease?" was a typical reply, Segel said.
Needing support, he was referred to a small, organized group of fellow care givers.
"I heard stories there that made me feel like I was a spoiled brat by comparison," said Segel, whose wife died last year.
Little was known, then, about the disease with which they were dealing. Some of the only literature they could find was published in the 1930s.
In those small meetings over coffee and brownies, the group created an organization that joined with similar groups that had formed in Chicago and New York. The groups bound together to form the Alzheimer's Assn., to distribute information about the disease and offer support to care givers.
The association has noticed a boost in interest in the disease since the recent announcement by former President Ronald Reagan that he is suffering from Alzheimer's, Segel said.
"The phone is literally ringing off the hook at our help line," said Amy Gross, also of Encino, a clinical psychologist at Gateways Hospital in Echo Park who is also the co-chair of the chapter's education committee.
"It's just wonderful that many more people are calling because now more people will be diagnosed early," said Gross, whose father died of the disease in 1989.
But with the increased awareness, there has been a side effect.
The Alzheimer's Assn. needs more volunteers to answer the telephones on its help line, to help with fund-raising activities and to work in their library and the group's speakers bureau, said Debra Cherry, program director for the chapter.
It's through the speakers bureau that members of the association tell their stories to groups ranging from medical workers to community service organizations, offering help to other care givers and raising the awareness of the disease.
"One misconception is that it's a normal part of aging so there's nothing you can do about it," Cherry said. She and other members of the association emphasize that it's a disease and not something that all aging Americans can expect to get.
"There is no cure, but there are things you can do to help the family," she said.
The Alzheimer's Assn. helps families through support groups and by aiding in the establishment of daytime care centers for senior citizens.
"Burnout is very common," said Segel, describing the feelings of isolation and stress care givers can experience. "There are many cases where the care giver has succumbed and died from a heart attack or stroke."
The association will have training sessions for new volunteers beginning March 7.
For more information, call Judy Wunsch, volunteer coordinator, at (213) 938-3379. The address is 5900 Wilshire Boulevard, Suite 1710, Los Angeles 90036.
\o7 Getting Involved is a weekly listing of volunteering opportunities. Please address prospective listings to Getting Involved, Los Angeles Times, 20000 Prairie St., Chatsworth, 91311. Or fax them to (818) 772-3338.