As a retiree, I've discovered several new roles in life: civic volunteer, foreign traveler, inconsistent golfer, online investor, exercise enthusiast and canasta player. But none of these roles has been as unexpected or unnerving as my most recent one: family caregiver.
For the past four months I have been caring for my wife, Sara. Her ordeal began in April when she was injured in an automobile accident. Her recovery took about eight weeks. Then, in June, she underwent major surgery for a separate problem. Eight weeks later, she is doing well, although she is not yet fully recovered.
During much of this time, I took care of both Sara's needs and the household chores: cooking, cleaning, bed making, laundry and shopping. When she still was unable to drive, I was the chauffeur. I soon realized it was fortunate that I was retired and had the time to be a caregiver.
But, I wondered, what would I have done if I still worked full time at my job at The Washington Post? Who would have done all those chores? Our children, with their jobs and busy lives, are not readily available for impromptu care giving. So we probably would have called a home health agency and asked for a helper to assist Sara and do the housework. That would have been costly, both financially and emotionally.
Fortunately, it didn't come to that. But my care-giving experiences--admittedly short term--opened a window for me on the stress and anguish endured by millions of Americans who care for chronically ill or handicapped family members. Sara and I have many friends who spent years caring for relatives suffering from stroke, cancer and Alzheimer's disease.
Caregivers belong to a big club. According to a recent report in Health Affairs magazine, 25.8 million Americans spend an average of 18 hours a week caring for ailing relatives. If those caregivers were paid an hourly wage of $8.18--midway between the minimum wage of $5.15 and the national rate for home health aides of $11.20--their annual services would be worth $196 billion.
In addition, it costs U.S. employers $11.4 billion a year to replace workers who leave their jobs or take time off to care for sick relatives, according to a study by the MetLife Mature Market Group and the National Alliance for Caregiving.
The role of the caregiver in American life is drawing much attention in Washington these days. Front-burner issues include:
* Long-term care. President Clinton has proposed a $1,000 tax credit that could be claimed either by people who require long-term care or their family caregivers. On Capitol Hill, legislators have proposed a variety of tax exemptions and deductions to help caregivers. Clinton also has suggested letting federal employees buy private long-term care insurance, which pays a limited amount toward the cost of nursing home and home care.
Gail Hunt, executive director of the National Alliance for Caregiving, based in Bethesda, told me that many in Congress are concerned about who will pay for the future long-term care costs of 77 million aging baby boomers. Hunt foresees a government decision to offer tax credits to people who buy private long-term care insurance.
* A helping hand. The National Family Caregiver Support Program, proposed by Clinton, would funnel $125 million to the states over five years to be used for adult day-care centers and other activities to help both patients and their caregivers. The program would operate through the Older Americans Act, which is awaiting renewal by Congress.
* Prescription-drug coverage. Clinton has proposed giving drug coverage to everyone on Medicare, at a cost of $118 billion over 10 years. The Congressional Budget Office said it would cost $168 billion. The plan, which is highly controversial, would affect millions of seniors, especially the chronically ill.
* Medicare "fixes." The Balanced Budget Act of 1997 was enacted to cut $116 billion from Medicare over five years. The depth of the cuts has prompted widespread complaints from home health agencies, nursing homes, therapists and medical schools. Industry lobbyists are trying to reduce the impact of the cuts and prevent additional cuts next year.
One person who is familiar with the stress of care giving is Suzanne Mintz, the co-founder and president of the National Family Caregivers Association, based in Kensington. In 1974, Mintz's husband, Steven, was diagnosed with multiple sclerosis, a disease of the central nervous system. He was then 31 years old. In the 25 years since, Suzanne Mintz has been her husband's caregiver. Today, although he is confined to a wheelchair, Steven Mintz works as an economist for the Energy Department.
Over the years, Suzanne Mintz slowly came to terms with her own situation. "For too many years, I did not have a name for what had happened to my life when my husband Steven was diagnosed with multiple sclerosis. For too many years, I was angry and unable to be comfortable with myself," she wrote in an article for Paraplegic News.
Mintz finally found her comfort level in identifying herself as a family caregiver and in helping create the National Family Caregivers Association, where she tries to help people who face similar challenges.
"By all of us identifying ourselves as family caregivers," she wrote, "we are saying that family care giving is not just a personal issue for those involved, to be dealt with only within the confines of our family, but rather a national issue that must be addressed. By identifying ourselves as family caregivers, we are calling attention to the inequities in our healthcare system."
Among those inequities, Mintz said, is a national health-care philosophy that says it's okay for the government to pay for skilled care for patients with acute care needs but it's not okay to pay for custodial care for patients with chronic or long-term care needs.
For older Americans who are seriously ill but can be cared for at home, Medicare provides benefits though Medicare-certified home health agencies. To get those benefits, however, the patient must be homebound and require skilled nursing care or physical or speech therapy on an intermittent basis. The services must be provided under a plan of care prescribed by a doctor.
Unhappily, the home health industry that provides these services has been engulfed in turmoil for several years, the result of sharp increases and then deep cutbacks in Medicare home health spending. From 1990 to 1997, Medicare's expenditures for home health services grew at an annual average rate of 25 percent, while visits per beneficiary more than doubled and the number of home health agencies grew to a peak of 10,524 from 5,700, according to the Health Care Financing Agency (HCFA), which runs Medicare.
"While some of this growth reflected legitimate medical needs . . . much of it stemmed from waste, fraud and abuse," HCFA Administrator Nancy-Ann Min DeParle said recently. Currently, there are 8,536 certified Medicare agencies in the country, the HCFA said.
Spokesmen for the $40 billion-a-year home health business attribute most of the industry's rapid growth to a court decision that increased the number of people receiving home health benefits, the trend toward shorter hospitalizations and medical advances that permit people to be treated at home.
When Congress adopted the balanced-budget legislation, Medicare-certified home health agencies were hit hard financially because the HCFA replaced its old reimbursement system with a controversial interim payment system. An even newer system will be installed next year.
These and other changes, said Eric W. Sokol, deputy director of government affairs at the National Association for Home Care, helped force an estimated 2,000 agencies out of business and made it financially undesirable for some agencies to treat the sickest and costliest patients.
When the amendment was enacted, Sokol said, the Congressional Budget Office (CBO) forecast that the Medicare cuts would take $16.2 billion out of the home care program over five years. But earlier this year, he said, the CBO said it expects the cuts to be closer to $48 billion. Given the impact of those cuts, Sokol said, the industry has appealed to Congress to eliminate a 15 percent cut in payment limits scheduled for next year.
A recent CBO report said that while home health agencies continue to close, patients generally are not losing access to care. But the CBO acknowledged that as health agencies try to cope with the interim payment system, sicker and costlier patients "may have increased difficulty obtaining home health care."
George Washington University researcher Barbara Markham Smith recently told a congressional committee that as a result of changes to the payment system, "many seriously ill patients, especially diabetics, appear to have been displaced from Medicare home care."
People who suddenly discover they need home health care for themselves or for relatives are apt to be confused about how to get that help. So I spoke with Harriet Shapiro Zargaroff, manager of the Home Care Resource Center of the Jewish Council for the Aging in Rockville. Zargaroff handles many calls from people seeking home care advice and guidance. She can be reached at 301-255-4250 or 703-978-7897. She also can be reached through the JCA's Senior HelpLine at 301-255-4200 or 703-425-0999.
Zargaroff said she tries to match people's home care needs with agencies that can best fill those needs. She generally refers callers to several agencies. And she frequently makes follow-up calls to patients to see how things are working out.
Health aides in the Washington area, Zargaroff said, generally are paid $10 to $18 an hour, depending on the level of care, tasks involved and the number of hours needed. Usually, the minimum is four hours. Cost is often a problem for people who are not eligible for Medicare benefits. "A lot of people out there need help but they don't have the finances to afford it," Zargaroff said.
A patient or relative who calls a home health agency, Zargaroff told me, should be prepared to answer many questions about the kind of care the patient needs and the circumstances in the patient's home. A Medicare-certified agency may send a representative to the home to assess a patient's medical situation and care needs.
If patients aren't happy with the aides who have been sent to them, Zargaroff said, agencies try to remedy the situation or send out a new aide.
Information about home health care also is available from Agencies on Aging. To find the phone number for an agency in your area, call the Eldercare Locator at 1-800-677-1116.
None of us know, of course, when we might be stricken by injury or illness. And we never know when we might become a caregiver or the cared-for. Nor do we know what our needs might be. Would we have to go to a nursing home or would we be able to stay at home with in-home care?
All of this uncertainty makes it difficult to prepare for such an event. One way to prepare, of course, would be to buy a long-term care insurance policy, which covers a portion of nursing-home and home-care costs. But those policies are expensive and many people cannot afford them.
As a retiree, I believe it would do a lot for the peace of mind of millions of Americans, as they plan for retirement, if Congress and the insurance industry could devise a way to make long-term care insurance available to everybody at a reasonable cost.
Reaching Out to Caregivers
Caring for a family member who is ill or handicapped can be a lonely and stressful task. But caregivers can find information, sources of help and even emotional support on several World Wide Web sites created by national care-giving and home-care associations. Here are several organizations, their Web addresses and their phone numbers:
National Alliance for Caregiving
Family Caregiver Alliance
For Home Care
National Council on the Aging