Taking Care

Photo by Norman Y. Lono

What do you do when a parent or spouse needs a caregiver? NEA-Retired members who have been there offer insights.

By John O'Neil

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 Eleanor provides the support, navigating the rewarding but stressful role of primary caregiver. "It's a 24-hour-a-day job, even if you have help," says Daut, a former local president and chief negotiator in Bergen County and now a member of the New Jersey Education Association-Retired. "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. "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. Fifty-two percent of family caregivers also juggle full-time jobs, while 16 percent are retired. 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 Education Association-Retired 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." (Fortunately, Carol's condition, and her self-sufficiency, have improved considerably since last year.)

Many caregivers also confront money problems and the confusing gaps in insurance coverage when their loved 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," says Burks. "The bills have not hurt us as they would some other people."

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?'" 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, NEA-Retired 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. The knowledge helped her plan for Dick's care as the disease advanced--and eased some of her uncertainty and stress. She was beginning to research options for hospice care when Dick passed away earlier this year.

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."

Should You Buy Long-Term Care Insurance?

While costs for long-term care in a nursing facility or at home are increasing rapidly, many people don't realize that health insurance, Medicare, and Medicaid will cover only a fraction of the bill.

The national average for nursing home care is $137 a day--or about $50,000 per year. 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 drop enough to qualify for the program. Not the best option.

Long-term care (LTC) insurance attempts 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.

LTC insurance makes the most sense if you have significant assets to protect and can pay the premiums without unduly affecting your lifestyle. Your premiums will be lower if you buy a policy when you're younger, but you'll also run the risk of purchasing coverage that won't fit your needs much later in life.

Some tips when planning 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.

--J.O.

A good general source is A Shopper's Guide to Long-Term Care Insurance, from the National Association of Insurance Commissioners. NAIC, 2301 McGhee St., Suite 800, Kansas City, MO 64108; 816-842-3600; www.naic.org.

NEA-Retired: In Your Corner

The NEA-Retired program, the official retired organization dedicated to the priorities of NEA members, advocates for strong retirement benefits, such as pensions and health insurance. If you or a loved one should need long-term care, these benefits can help to protect your financial security.

You can join NEA-Retired as a lifetime "pre-retired" member, if you are currently an Active NEA member, or join upon your retirement from active service. For more information on the benefits of membership, contact your state affiliate's retired program. Or contact NEA-Retired, 1201 16th St., N.W., Suite 410, Washington, DC 20036.