Caring for the Caregiver
For: Wellness Fact, May 2003
True or false:
1. While in earlier days Americans took care of sick and elderly family
members, today they’re too busy.
2. The burden of caring for older people falls mostly on the young.
3. Most people in need of care are in nursing homes or other residences. Medicare covers this for people over 65.
Answers:
1. False. In fact, the bulk of long-term care for the disabled and the
elderly is still provided by unpaid family and friends—22 million
of them in the U.S., according to the National Alliance for Caregiving,
and the numbers will increase as the population ages and requires more
care. In Canada over 2 million people care for older relatives, and 90%
of elder care is provided by family members. (Maclean’s magazine
called this "a heartbreaking struggle" and "a national
disgrace," since caregivers get so little support.)
2. False. More and more older people are acting as caregivers, here and around the world. The average age is 57. Here, as in most countries, the majority of caregivers are women (72%).
3. False. Most of those in need of care are at home. Even at age 85 and beyond, only a small percentage live in nursing homes. Medicare pays nothing for long-term care—whether at home or in an institution. You must either pay out of your own pocket or have private insurance. You can go on Medicaid (the medical program run by the states), but only if you (and your spouse) are virtually destitute. People often have to "spend down" their assets to get into that category.
If you are caring for a disabled person—child, spouse, friend, lover, or parent—you may be cheered to know that you’ve been called "one of society’s great assets" and "a hero of the system." The value of unpaid care rendered in this country is estimated at roughly $200 billion a year: that’s what it would cost if insurers had to pay for it. Many people provide care skillfully and uncomplainingly out of love and a sense of responsibility. But caregiving even at its best can be a thankless and backbreaking task, consuming every moment of your time and then some. (The 36-Hour Day is the all-too-true title of a classic book of advice about caring for Alzheimer’s patients.) And disability in a family often goes along with reduced earning power—or poverty.
What do caregivers need?
Even in wealthy households, caregivers need help—somebody to assist with shopping and other duties—or just a break from a task with no letup. Caregivers regularly perform such tasks as lifting, feeding, bathing, dressing, undressing, and toileting the disabled person, as well as dealing with wheelchairs and other heavy equipment. Depression, exhaustion, money worries, and fears for the future often trouble both the recipient of the care and the caregiver. Many people who care for someone also have jobs—or may belong to what’s been called the "sandwich" generation. That’s a person who’s caring for the young as well as the old.
Recently a widely publicized study found—to nobody’s surprise—that a caregiver who’s under mental or emotional strain is at increased risk for illness and premature death. This study, which appeared in the Journal of the American Medical Association, was not the first to suggest that the health of caregivers may suffer. And yet, though the implications of this finding are troubling, our health-care system is simply not set up to do much about it. Our system, including health insurance, is designed to provide care for the temporarily sick—those who either die or get well—not for the chronically ill or disabled , and certainly not for the people who care for them.
The needs of caregivers vary. One may need information, another a tax break or other form of subsidy, another a visiting nurse or aide, another assistance with shopping and tasks requiring driving, yet another the opportunity to talk with other people in the same position. Or all of the above. Various state programs may offer some help, such as visiting nurses or subsidies for building a ramp on the house or a bathroom designed for the handicapped or elderly. Some states fund such programs as adult day care, home health care, and support groups. The state of California works with the California Family Alliance to provide information and a variety of services. Other states, such as Florida, put volunteers in touch with families that need help. Some federal money goes into these programs. A few states offer tax breaks to caregivers. But funding is always limited, and many caregivers find themselves too poor to hire help, but too "rich" to qualify for state programs.
Since 1997, when Congress slashed Medicare funds for home care, spending has fallen by almost 50%. Home care allows many people to remain at home, rather than move to a nursing facili-ty or live with no help at all. The lawmakers did not calculate what effects this might have on the disabled, let alone on caregivers.
Where and how can caregivers find help?
You may be so concerned with the problems of the person you take care of that you forget that you too need support and validation, not to mention help with the laundry, a vacation, or time to see a movie and get a haircut. Children in households where a disabled person lives are often adversely affected emotionally and need sympathetic advice and other help. One of the first steps caregivers must take is to admit that they too need help—often difficult to acknowledge. Indeed the most capable people may have the hardest time asking for help. Here’s how to find resources:
• Learn about community services. Start with the telephone book: look under "Services for the Aging," "Alzheimer’s," "Arthritis Foundation," or whatever applies. Ask your doctor for guidance. Call the reference librarian at your library. Find out if you qualify for whatever state programs are available, for deliveries from Meals on Wheels, or for a home health aide. The organizations listed below are excellent sources of information.
• Join a support group. Those listed below publish news-letters and books, and membership costs are minimal. Local meetings are a source of information, companionship, and practical help. And these groups often work to promote better laws, more funding, and better public understanding.
• Don’t forget friends, family, and neighbors. They may really want to help but not know how to go about it. When someone says, "let me know if I can do anything," take it literally. Reply by asking "could you take my shopping list to the grocery store next time you go?" Or "could you relieve me next Tuesday afternoon so I can go to the dentist?" A network of friends who’ll each do one small task once a month can make a big difference.
UC Berkeley Wellness Letter, December 2000