Taking Care

How caregivers nurture their loved ones--and care for themselves. NEA-Retired members share their stories.

By John O'Neil

Photo by Norman Y. Lono

In 60 years together, Eleanor and Vic Daut traveled the world, getting their passports stamped in Scandinavia, Germany, Austria, Switzerland, the United Kingdom, and the Caribbean islands.

But their life since Vic suffered a stroke in 1992 has been an altogether different kind of journey. Vic has had a series of health setbacks since the stroke and now spends three-fourths of his time in bed. He broke his hip recently and needs help feeding himself and using the bathroom. Eleanor cares for Vic, with the part-time help of a nurse's aide.

"Our life together before the stroke was so active," says Eleanor, who taught special needs students in Bergen County, New Jersey, before retiring in 1994 to care for Vic. "We traveled all over the world and had a home in Florida where we vacationed. Vic also spent a lot of time working with me. I was the yearbook advisor, and Vic was the one providing support at all the flea markets and spaghetti dinners" raising money for school programs.

Now it's Eleanor providing the support, navigating the rewarding but stressful role of primary caregiver. "It's a 24-hour-a-day job, even if you have help," she says. "It's hard to make schedules to do anything. I still get up at night and go to Vic's room to check on his breathing."

Eleanor and Vic are backed up by excellent retiree health coverage negotiated years ago by her local, the Bergen County Vocational Technical Education Association. Daut herself served as negotiator and president during her teaching career. "Everything we've needed [for Vic's care] was provided by the fringe benefits we bargained for," including a hospital bed for home and a custom wheelchair. Other NEA-Retired members serving as caregivers also cite the health benefits bargained by the Association for helping them through an extremely challenging period.

As Americans live longer, more seniors require assistance with activities of daily living (ADL), such as dressing, eating, or bathing. With costs of nursing facilities and home health care rising sharply, informal caregivers, such as spouses, sons, and daughters, are picking up much of the slack. The number of households where at least one person over 50 needs help performing ADLs is expected to grow from 23 million to 39 million by 2007, according to the Family Caregiver Alliance. About 16 percent of family caregivers are retired, and 20 percent spend 40 or more hours per week providing care. Caregiving falls predominantly on women; about 7 of 10 unpaid caregivers are female.

Barbara Axelrod is a typical caregiver. In 2000, she retired from her teaching job in New Jersey and moved to Silver Spring, Maryland, to care for her mother, Ray, now 92. At first, Ray just needed a little help, but she's battled health problems since then that have created limitations for her. "Until she was hospitalized in December [for an infection], she was climbing trails in a local park," Axelrod says. But the illness took a lot out of her. Ray was in the hospital 12 days and lost 12 pounds. Though she needed the medical care, Ray rebelled at the hospital environment, Axelrod says. "At home we take her out for walks or sit outside. She likes her own bed and having family come to visit her in her home." A home health aide helps out daily, allowing Axelrod to run errands and take some time for herself.

Caregiving is an expression of love that can strengthen the bond between those giving and receiving the care. But it can be a strain for caregivers as they try to cope with myriad demands--from the emotional pain of witnessing a spouse's or parent's slow slide into dementia to the physical challenge of hoisting a loved one in and out of bed. The caregiver's own health sometimes falls by the wayside--with serious consequences.

Caregivers use prescription drugs for the treatment of insomnia, anxiety, and depression at rates two to three times the general population, according to the Family Caregiver Alliance. Depression is a common problem; about one-half of women and one-third of men who are caregivers experience depression.

Florida member John Haass fought depression while caring for his wife, Carol, who suffered from an unusual infection that baffled doctors and severely limited her activities for almost two years. John took on increasing responsibilities for Carol's care, from helping her to the bathroom to giving her IV antibiotics, all the while trying to navigate the Byzantine world of hospitals, nursing homes, and insurance coverage.

The stress became too much. "I became quite depressed and had to go on antidepressants and have four or five sessions with a psychologist," says Haass. "We had been married for 48 years and were best friends, and it just tore me up that there didn't seem to be anything they could do about it. We thought we were fighting a disease that was going to kill her in the end." (Carol's condition, and her self-sufficiency, have improved considerably since last fall.)

Many caregivers also confront money problems and the confusing gaps in insurance coverage when one is shifted between hospital care, nursing homes, and home care. Medicare and Medicaid severely limit coverage of medical supplies and services for home care, and all private health insurance plans have gaps and exclusions.

Anne Burks, who cares for her husband, Bill, credits the Georgia Association of Educators (GAE) with ensuring that its members have access to strong retiree health care. She's enrolled in a premium plan that has covered many of Bill's expenses that might otherwise have to be paid out of pocket. "GAE is the reason we have this health insurance, and that has been a blessing. The bills have not hurt us as they would some other people."

NEA-Retired and the family of local retired members also are there for caregivers. Burks says GAE-Retired members provided support as she coped with her husband's decline into dementia. She continued to take Bill to state retired meetings--an activity that helped to sustain her--and members kept an eye out for him as Anne participated in the sessions. "I've gotten wonderful support from my family, my church, and my friends in the Association," she says.

John Haass got letters and calls from leaders in FEA-Retired and offers of assistance. "We try to help one another out," he says. "When people ask, ?What can I do to help,' you've got to say, ?Can you take the shopping list or sit with Carol for a bit while I take a walk?'"

Your local and state Retired organizations also stand with NEA-Retired by providing speakers at Association meetings and other information on caregiving issues. And NEA Member Benefits offers a range of policies to protect caregivers and their loved ones, including Medicare Supplements and long-term care insurance. (For more on long-term care insurance, see "Should You Buy?").

If you're currently a caregiver, or soon will be, other members offer these tips for getting by:

• Educate yourself. You're going to have to learn a lot about the medical issues facing the person for whom you'll provide care--as well as the care options and insurance coverage that may apply. Michigan member Delphine Rogers' husband, Dick, was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's disease) in 1999. She read whatever she could on the disease, did research on the Internet, consulted the local chapter of the ALS foundation, and interviewed occupational and healing touch therapists. That helped her better understand what Dick was experiencing as the disease advanced--helping her care for Dick and easing her stress. She was beginning to research options for hospice care when Dick passed away this past February.
• Speak up with health professionals. "Being a patient advocate is really important," stresses John Haass. "You've got to be involved in everything; you can't just say, ?We'll turn it over to the doctors at the hospital or the home health care aide.'" That means asking questions and--if necessary--getting second opinions or taking your concerns up the chain of command. When Carol Haass was hospitalized, John observed her condition declining dramatically one day. Hospital staff were awaiting the results of a lung scan when John, desperate, noticed a surgeon who had operated on Carol previously come through the wing. John grabbed him and insisted he see Carol, and the doctor ordered her into intensive care immediately. John shudders to think what may have happened if they had continued waiting for test results.
• Pursue other outlets. When possible, keep up with hobbies or other outlets to recharge your batteries. Haass, who continued to serve as president of Gulf Coast UniServ-Retired during Carol's illness, says the duties helped shift his focus and "got him out of the hospital for a while." New Jersey member Eleanor Daut volunteers with a dispute resolution committee that supports the local courts by working out community complaints and disputes before they end up in front of a judge. Axelrod takes Hebrew and Yiddish classes and is considering piano lessons. "You've got to get out of the house," she says.

For many caregivers, the increasing demands are balanced by the deepening of their relationships as they enter a new phase of love and understanding. Says Daut: "Vic and I spend our time reflecting upon the past and all the traveling we did and the great times we've had. We're never very far from one another. By caring for Vic for 11 years, I've been his left- and right-hand helper as he was for me earlier in my career. I know God will never give me more than I can handle as his caregiver."

"Caregiving is a journey into the unknown," adds Axelrod. "You never know what each day will bring."

Do you have tips on making the most out of your role as a caregiver? Please send them to John O'Neil, This Active Life, NEA, 1201 16th St., Suite 710; joneil@nea.org. We'll consider using them in a future story.

Should You Buy Long-Term Care Insurance?

An only child, Kentucky member Ann Caldwell knew she would need to help support her mother in her old age. When she began visiting residents of nursing homes (through a program organized by her church), what she found alarmed her.

"I saw a lot of places I didn't want my mom to be in," she recalls. With nursing home costs rising, she wanted to make sure her mother would be "in the best place possible."

Caldwell turned to an increasingly popular solution--long-term care (LTC) insurance. She bought a policy for her mother that pays $80 per day toward the $152 per day cost for her care at a small local nursing home. Her mother has a private room, and there is one staff person for every five residents. Her mother, 84, has been at the facility for close to two years, and Caldwell says the insurance was a wise investment.

Most people are aware of the rising cost of hospitalization and treatment for acute illness. Fewer realize that expenses for long-term care in a nursing facility or at home also are increasing rapidly--and that health insurance, Medicare, and Medicaid pay only a fraction of the costs. The average daily cost for nursing home care, for example, is $137. Medicare covers no more than 100 days in a nursing home for rehabilitation and nursing services, following a recent hospitalization. Medicaid pays a portion of nursing home costs, but individuals must pay costs out of pocket until their assets are scarce enough to qualify for the program.

LTC insurance policies attempt to fill in some of these gaps in coverage. A typical policy provides a "daily benefit amount" for covered services, which may include a room at a nursing facility, adult day care, or costs for medical equipment or beds. Your premium will be affected by the level of benefit you choose, among other factors.

United Seniors Health Council suggests that LTC makes the most sense for those who can pay the premiums without unduly affecting their lifestyle and who have assets (not including home and cars) of at least $75,000 and annual retirement income of at least $25,000.

Policies vary widely, however, and determining whether LTC insurance is for you--and which policy might be best for your situation--requires diligent research. Some tips when considering options for financing long-term care:

• Don't be pressured. Some agents use scare tactics or push you to make a hasty decision. Take your time and get the policy terms in writing.
• Research your options. LTC insurance helps relieve the burden of long-term care costs. But there may be other sources of money you could use--such as a reverse mortgage or a disability or life insurance policy that could be converted.
• Shop around. If you do decide to buy an LTC policy, make sure to compare policies from several different reputable companies. Make a list of the kind of features you want in a policy--such as home care coverage and inflation protection that increases benefits to reflect future costs--and make sure each policy you consider has all the qualities you're seeking. If necessary, consult an objective geriatric care or case manager to guide you.

Other resources to consider:

NEA Member Benefits' long-term care insurance developed especially for NEA members. To find out more, call 800-637-4636 or go to www.neamb.com.

Insuring Your Future: What Caregivers Need to Know About Long-Term Care Insurance, from the Family Caregiver Alliance at www.caregiver.org.

A Shopper's Guide to Long-Term Care Insurance, from the National Association of Insurance Commissioners (NAIC), walks you through the ins and outs of LTC policies and includes a handy glossary of terms. For more, contact NAIC, 2301 McGhee St., Suite 800, Kansas City, MO 64108; 816-842-3600; www.naic.org.

--J.O.

For More

The National Alliance for Caregiving offers fact sheets and other publications providing tips for caregivers on a wide variety of topics. Contact: National Alliance for Caregiving, 4720 Montgomery Lane, Suite 642, Bethesda, MD 20814; www.caregiving.org.

The Family Caregiver Alliance is an authoritative source of statistics, research, and resources on caregiving. Its Web site (www.caregiver.org) includes a clearinghouse of concise publications and fact sheets as well as news on caregiving research and legislation. Contact: Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104; 415/434-3388.

The Eldercare Locator, a nationwide service supported by the U.S. Administration on Aging, will help you find agencies and other resources in your community. To learn more, call 800-677-1116 or go to www.eldercare.gov.