When Janet Tulloch talks, each syllable seems an effort. A victim of cerebral palsy, her words sound as if they were being uttered underwater. The meaning behind them, however, is anything but murky.
"The real function of the nursing home is to be the last stop before you die," she says. "That's more or less what everybody knows, but we don't say it openly."
Tulloch, 62, has lived in the same D.C. nursing home for the last 19 years. Even aside from her length of stay -- the average long-term resident is in a home for only 2 1/2 years -- she is unusual: an outspoken advocate in a situation where most patients are understandably quite timid.
"Some residents are afraid to complain, and people who are sick and old become naturally passive," she says. "It's part of a very ancient taboo against people who are old and have imperfect bodies. It's hard to feel as if you're heard."
Over the past two decades, Tulloch has been heard. She's testified in Congress, written a book titled A Home Is Not a Home and become a board member of the National Citizens' Coalition for Nursing Home Reform, all in pursuit of better care for nursing home patients.
A recent Senate Special Committee on Aging report said a nursing home could be dangerous indeed, asserting that many "more closely resemble 19th-century asylums than modern health care facilities."
"It's hard to imagine a more vulnerable group of consumers," says committee investigator David Schulke. "Their relatives often aren't alive or are far away, which makes it easier for people with bad intent to take advantage of them, and for accidents to go uncorrected."
According to the report, almost one-third of the country's 8,852 skilled nursing facilities "failed to meet at least one basic federal standard to assure the health and safety of residents in 1984. Almost a thousand failed to meet three or more such standards."
The nursing home industry has not exactly given the report its seal of approval. Paul Willging, executive vice president of the American Health Care Association, a nursing home trade group, labels it "sophomoric." The report, he charges, "utilized a manipulation of data to make assertions that are not borne out by the facts."
Out of 541 regulated elements of care, the committee evaluated compliance with the 25 it deemed most critical. If, for instance, a daily medication form had not been filled out, the home was marked as negligent, whether or not the patient actually had received the medicine.
The report "assumes that deficiencies in paperwork constitute poor quality care," Willging argues. "There are some bad nursing homes, but there aren't anywhere near the number suggested."
Schulke counters that "we did everything we could to have a very conservative method of analysis. These were anticipated inspections, when the homes would be on their best behavior . . . And proper recording of medication is essential. Many patients are on four to seven at the same time. If they're not written down, the chance becomes much greater of missing something, or getting it twice."
Anne Hart, the District's long-term-care ombudsman, is the official advocate of the residents in the 16 licensed nursing homes here. "I get uncomfortable about quoting numbers" of deficient homes, she says. "They all potentially could have problems. We've got to be monitoring all of them, all the time. But we also have to get past the sensational aspect and move on to the commitment part."
Tulloch thinks the problems in nursing homes are more subtle than the report indicates.
"It's not being hit, neglected, beaten, abused or forced to lie in your feces all day," she says. "It's not as dramatic as that. A big abuse, you can call up someone and report. But if someone walks into my bathroom when I'm on the toilet and tries to give me my medication then, it's hard to tell people how horrible that is."
Most abuse in homes comes from frustration rather than intent to hurt, says Barbara Frank, associate director of the National Citizens' Coalition for Nursing Home Reform.
"A home is a lonely place to live and a lonely place to work," she says. "Most homes don't acknowledge that and don't work to change it. The employes don't look at a resident and build on their strengths, or say how to make the person better. They look at the weaknesses and ask what they have to care for. That sets up a loaded relationship."
Says Tulloch: "On one level, they want to keep you independent, because then you can do things like feed yourself. But often they dampen your spirit. If someone cuts my meat, they cut it real small, like for a 2-year-old, whereas I have an adult mouth. It's done with good intentions, but you wouldn't do it outside the nursing home."
Traditionally, nursing home residents have been frail rather than sick. New limits on Medicare payments to hospitals, however, have shortened the time a patient can stay there. As a result, many homes now have short-term residents who are still recuperating.
"The hours it takes to care for these patients is much greater, and the skill level of the nursing aides has had to be upgraded," says a Maryland nursing home administrator who asked not to be named. "States that haven't done this can have homes in big trouble."
Maryland, he notes, has tightened its regulations, a condition reflected in the Senate Aging report, which shows a below-average incidence of chronic deficiencies in the state's skilled nursing facilities (Virginia and D.C. are also below average). Part of what needs to be done, he adds, is "developing internal programs not only for residents but for staff, where both can work together for a homey atmosphere."
Asked how many homes in Maryland did that, and how many were places in which he would want a loved one, he responded: "85 percent." In the country as a whole: "65 percent."
The surest thing about nursing homes is how many people will soon need them, and how much our society will switch its focus to the elderly. By 2040, in fact, it's estimated that as many as 20 percent of those age 65 to 74 will have a living parent.
Sheer numbers are already causing some researchers to divide the elderly into three groups: the young old (65 to 74), the middle old (75 to 84) and the old old (85 and up) -- or yoppies, moppies and oops.
It's the oops group that is increasing the most. Between 1980 and '85, according to the Census Bureau, the number of those 85 and older grew by 21 percent, from 2.24 million to 2.71 million. That's just the beginning: by 2000, there'll be 4.9 million oops; by 2020, 7.1 million; by 2040, 12.8 million.
"There have been amazing strides in problems of mortality, but not as much improvement in morbidity," says Willging. "So we live longer, but still suffer the same diseases. Thirty years ago, if you had Alzheimer's, you would only live for a year or two. Now you can have a chronic disease and live for six or seven more years."
The National Institute on Aging estimates that 50 to 60 percent of the nation's 1.3 million nursing home patients have some form of severe dementia, usually Alzheimer's. The older you are, the more likely you are to get it. As the number of oops skyrockets, so will the number of Alzheimer's patients.
Experiences like Anne Sibrava's are already becoming typical. In 1982, she and her 65-year-old husband Robert moved from New York to Gaithersburg, where her daughter lives, after it became apparent that he had Alzheimer's.
"After living with him for nine months, no one could tolerate him," she says. "I was screaming at him to open his mouth so I could feed him. He was belligerent and forgetful . . . like a child, a little baby."
Sibrava, now 66, moved her husband to a nursing home 25 miles away. "When I left him there, I cried for a week. We weren't holding hands and madly passionate, but we had always been together. I always thought that I'd be the one to go first."
The home seemed good to the residents, she says, adding: "I'm not feeling guilty, but I can't say I went to see him as often as I could. Every time I saw him, I broke down . . . Each time, he got worse."
Robert's 20-month stay was expensive, as nursing homes usually are if you're not broke enough to qualify for Medicaid (Medicare and private insurance have an extremely limited role in paying for nursing homes). "It cost me $40,000," Sibrava says. "It takes a hell of a long time to save that much. All the fun and games we could have had with it -- it all went down the toilet."
It's an uphill struggle for both residents and workers to make a nursing home a good place to live. The residents give up control over their own lives in nearly every way: what they eat, how long they sleep, their privacy. No matter how homey, it's still no place like home.
Some of the happiest nursing home residents Senate investigator Schulke ever saw were ones who finally got their toaster repaired. The administrator would not fix it, so on visiting day, the residents festooned the walls with burnt toast.
"They got the toaster fixed that week," Schulke says. "The surest way for a resident to be happy is to participate in the home's management, through its resident counsel."
Another relatively simple way to make nursing homes better, says the Citizens' Coalition's Frank, is to offer support to workers as well as residents -- "to give them the opportunity, the time and the money to do something other than just feed the residents and wipe them off. You can't pay people minimum wage and then expect them to do more complex work, especially when they're not properly trained or supervised."
To move out of that limited role takes money. "We're hardly at a point where we're asking for a Cadillac," says Frank. "We're asking for a car that works -- the basics of nursing care and interpersonal skills."
If nursing homes should be modeled on anything, their advocates say, it should be the schools. While most people don't even know where their local homes are, schools are a matter of public pride: People attend functions there, belong to the PTA, know who is on their school board.
"Yes, probably most people go to nursing homes to die, and for that reason, we're afraid of them," says ombudsman Hart, who changed her college major from English to gerontology when an elderly friend went into a nursing home and mysteriously died. "But we're all aging, and there's a likelihood we all might need this at some point. We have to take responsibility for it."
Critics charge that too much emphasis and energy is now spent on just maintaining the status quo in nursing homes -- on getting the residents through the day with a minimum of disruption and strain. It's a process that removes all motivation, says Hart.
"Why should you keep on living in a nursing home? What's to get up for in the morning?" she asks. "Just because your body is deteriorating the rest of you isn't."
The staff doesn't want to put you down, but it's in the system, says Tulloch. "There's an attempt not to treat us as children, but there's still a lot of head patting and 'be a good girl.' They're not equipped to encourage you."
The negative relationship cuts both ways, she adds: "We only see the people who care for us as care givers and not as persons. It should balance."
If people would only look, Hart says, they'd see the potential for learning. One idea she'd like to see tried is putting day care centers in homes. The residents could help, and the staff would have a place for their own kids.
"Life is not over until the last day, until the last hour," she says. "Look at all these people have given us. They've done your job, my job. They're our parents, our friends.
"The fact that someone's given us something -- doesn't that mean we owe them?"