The challenges of caring for a relative at home

Earl Smith and Mary Bowden and her mother are three in 6 million. That's how many Americans have received care at home this year, rather than in nursing institutions. Some, like Mr. Smith and Ms. Bowden, are physically ailing; others, like Ms. Bowden's mother, have mental problems.

Contrary to popular belief, four times as many elderly Americans are cared for at home or in someone else's as are in nursing homes - 6 million vs. fewer than 1 million. Like Mr. Smith, more than half are being helped by wives or daughters. He was assisted by both.

``People would rather stay in their own homes than go to a nursing home,'' says Eric Shulman, legislative director of the National Council of Senior Citizens.

The annual cost of home health care in America has risen an estimated 20 to 25 percent in recent years. Three years ago individual Americans and medicaid together paid about $9 billion. By 1990 the annual cost of home care is expected to reach $16 billion, with no end in sight as America's population continues to grow older.

In every corner of the United States, people, like the Smiths and the Bowdens, are dealing with long-term care. (Caring for your parents, Page 24.) In a poll taken last year, 47 percent of the respondents said they had had some experience with long-term care. They were answering a poll taken for Long Term Care '88, a joint effort by the American Association of Retired Persons and the Villers Foundation to put long-term care on the national agenda.

Until recently Smith spent his days in a re cliner watching through the sliding glass door as Washington's seasons marched past. ``For the last six years, really, I've been caring'' for him, his wife said a few weeks before he died earlier this month.

The emotional, physical, and financial challenges the Smiths faced are typical for those caring for relatives at home.

The federal medicare program is supposed to help the elderly with medical costs. But it does not pay for most long-term home care or nursing-home care - only for skilled assistance, as from a physician or nurse. In cases like Smith's, the bulk of the help required is in ordinary activities like walking, dressing, and feeding.

That's why women like Mrs. Smith devote years, with little or no help, to caring for their husbands. They cannot afford any aid. And the government and most insurance companies have been unwilling to provide money unless these people spend so much of their own funds first that they become impoverished.

Mary Bowden and her mother are a case in point. They live in a modest public-housing apartment almost within sight of the gleaming buildings that house Congress and the Supreme Court.

Weekdays, a publicly provided aide cares for them, which isn't easy because Ms. Bowden's mother, who is in her 90s, is blind, incontinent, very confused, and has great difficulty walking.

At night and on weekends, Ms. Bowden provides the care, which is even more difficult: She is in her late 70s, has various health problems, and is also sightless. But she doesn't complain.

Many families cannot afford anything beyond what public funds can pay. Those families who can pay for home assistance, usually wind up with a blend of paid help and volunteer aid by relatives. One is the family of Alice L. of suburban New York. She can get around her apartment but needs a constant companion. From breakfast to supper during the week, a nurse aids her, paid for by the family. To keep the budget from breaking, her two daughters alternate caring for her, at night and on weekends. No one complains, but it's not easy: Both are married, have teen-age children, and work full time.

And that's part of the problem with trying to care for relatives at home. In many families, both husband and wife now have full-time jobs. When the need arises for someone to care for a relative at home, often the care-giver often has to quit working.

That's why one of the fastest-growing areas in health care is in organizations that, for a price, provide home care. Until recently, only a few of them existed; most were nonprofit like the Visiting Nurse Association of Washington, D.C. For instance, Judy Hyatt, a registered nurse with the association, regularly checked on Smith.

Today nearly 11,000 US organizations provide home care, says Val Halamandaris, president of the National Association of Home Care. ``We've known for years what to do'' to help people at home, he says. ``It's just a question of having the will to do it, and finding some method of financing it.''

The US House of Representatives is expected to vote shortly on the first of several major bills that deal, at least in part, with at-home care. Sponsored by Reps. Claude Pepper (D) of Florida and Edward Roybal (D) of California, it would provide federal funding through medicare for home care, not only for the elderly but for Americans of all ages. But most such proposals would carefully limit what care could be financed.

Such a government program would require a new bureaucracy, says Peter Ferrera, a policy analyst at the Heritage Foundation. He and others worry about costs and the quality of care. Checking on both quality and cost in millions of homes would be difficult for ``bureaucracy to cope with,'' he says. ``This is where a private-sector initiative properly could better deal with it.''

In many states there is little if any regulation of at-home care agencies and reports of poor care or even mistreatment by unqualified aides occasionally arise. Many experts are concerned that as services expand the quality could seriously deteriorate.

Mr. Halamandaris says care has generally been good: ``Only seven home-care providers have been convicted of fraud and abuse in the whole history'' of at-home care. But he concedes that ``we're starting to see some breakdown in quality'' among those organizations that essentially are brokers between people who need care and individuals who say they can provide it.

But for many families the quality of such care is irrelevant: They cannot afford anything beyond what public funds pay for, and that's often too little.

Early this spring the Smiths had moved into their daughter's apartment. Until then, Mrs. Smith says, she was so house bound ``I felt like climbing the walls. ... He just don't want me to get out of his sight five minutes.'' It's a typical problem: Many people who are dependent on care-givers become uneasy when they are not in view.

Efforts are under way in Congress to provide funds that would, in part, provide the Mrs. Smiths across America with time to do something outside the home - perhaps only an hour or two a week to shop, eat lunch with a friend, or just take a walk. Some new private insurance plans would also provide reimbursement for such respites.

But a family's decision to care for a loved one at home is not based on cost or personal effort or what the government does or does not do to help. It's based on love.

``Maybe I've just got a good heart. ``I love him. As long as I can stand up and I can take care of him, I'm going to ... 'cause I want to be with him as long as he's here,'' Mrs. Smith said recently.

How did Smith feel about that? ``I'm married to the most wonderful woman in the world,'' he said.

Fourth of five articles. Next: Continuing-care retirement facilities.