About five years ago, Nina Dayan noticed that her husband's moods began alternating between anger and depression. Then her husband started doing strange things: He would hide her keys, steal money from her purse and share his social security number with strangers on the phone.
Eventually, his Alzheimer's disease was confirmed. The diagnosis explained her husband's strange behavior, but it didn't make things any easier for Dayan. She remained on constant guard to ensure he didn't answer the phone, open the mail or touch the checkbook.
"I had to sleep with one eye open," said Dayan, 77. "It was making me a nervous wreck."
Although she was suffering from her own ailments, including back and knee problems, Dayan's caregiving prevented her from seeking medical attention for her own ailments. Dayan's actions illustrate the approach taken by most caregivers: Ironically, those who devote themselves to caring for others tend to neglect their own well-being.
"Caregivers take themselves out of the circle of care in order to focus on their loved one," said Gary Barg, founder and editor-in-chief of Today's Caregiver magazine. "We want to make sure our loved ones are getting the rest they need, but we never sleep. We want to make sure our loved ones get the care they need, but when's the last time a caregiver ever went to a doctor?"
This topic and others will be explored at The Los Angeles Fearless Family Caregiver Conference in Carson on June 28, sponsored by Today's Caregiver magazine along with the City of L.A. Department of Aging and the L.A. County Area Agency on Aging. Keynote speaker Barg said the conference will not only provide practical information for attendees, but help them overcome the sense of isolation so typical of caregivers.
Given the sheer number of caregivers in the United States, the issue of caregiver well-being presents a serious challenge. According to AARP, more than 44 million Americans provide unpaid care to friends and family. That number will continue to rise as the population ages. Currently, family caregivers provide about 80 percent of the assistance required by those who need help with daily activities such as bathing and dressing, taking medications and paying bills.
Caregivers span all ages, although statistically the average caregiver is a 46-year-old woman who is married and employed outside the home. Caregivers may tend to someone older, like a parent; close in age, such as a spouse; or younger, like a child. Sometimes, as in the case of the sandwich generation, they provide care to multiple generations simultaneously.
Whatever their particular situation, caregivers face a host of common challenges, including financial and legal issues, need for respite and lack of information about existing community resources such as counseling services, adult day care centers and home-health care agencies. In addition, they experience depression at twice the rate of the general population. (The rate jumps to six times for caregivers of individuals with Alzheimer's and other brain-related impairments.)
Barg said the gathering shows caregivers that "there are other people in the community going through what you're going through. It's important to be around others."
Barg also urges caregivers to see their role as a job, even if it is a labor of love. This entails learning as much as possible, attending conferences and support groups and communicating with members of the patient's health care team.
"The more you treat yourself as a professional and the more you care for yourself, the better job you can do for your loved one," he said.
As for Nina Dayan, she found help at the Eichenbaum Health Center at the Freda Mohr Senior Service Center on Fairfax Boulevard. In addition to exercising there three times a week, Dayan attends lectures and programs and participates in a support group for people whose spouses have Alzheimer's.
Eight months ago, Dayan placed her 85-year-old husband in an assisted living facility in Santa Monica.
"I took care of him until I couldn't anymore, and had to take care of myself," she said. She has since undergone cataract surgery on both eyes, and will have knee replacement surgery this month.
Dayan said her husband has adjusted to his new living arrangement and has made many friends. Now, he spends his day socializing instead of bickering with her. She still worries about his health and her own, as well as how long her finances will hold out. But her relief at finding an interim solution is apparent. As Dayan puts it, "I'm breathing again."
The L.A. Fearless Family Caregiver Conference will take place on Tuesday, June 28, 9:30 a.m. to 3:30 p.m. at The Carson Center. 801 East Carson St., Carson. For more information or to register, call (800) 829-2734 or visit www.caregiver.com.Caregiver Resources:
California Caregiver Resource Centers: www.cacrc.org/californiacrc
Family Caregiver Alliance: www.caregiver.org
Jewish Family Service: www.jfsla.org