The Agelessness of AIDS
Carolyn Williams life has always been tumultuous. An incest survivor and the child of alcoholic parents, she began drinking at a very early age. To escape the chaos of her family, she married when she was still a teenager. After three failed marriages and a history of abusive relationships, she moved in with a junkie and became addicted to heroin in a matter of days.Neither Williams nor her live-in boyfriend knew he was HIV-positive until he developed full-blown AIDS. He died shortly afterward. She was later diagnosed with HIV. "I was having unprotected sex with him and I was using," she says. "Neither behavior was safe. Both of us thought, 'It's not going to come around here.' People always think it's not going to affect them."Williams' history certainly fits the profile of someone in a high-risk group for HIV/AIDS. Yet, there is one major way she does not fit our image of who gets AIDS: Carolyn Williams is 57 years old; she is a grandmother.Unfortunately, Williams is not alone in her age group. In fact, she is part of a growing segment of the AIDS epidemic. According to the Centers for Disease Control, people 50 and older represent the fastest-growing infected population; the center reported a 71 percent increase in such AIDS cases between 1992 and 1994. Nationally, people over age 50 account for 10 percent of all reported AIDS cases. At least 25 percent of those cases are people over 60, and 4 percent are over 70. The New York City Aging Task Force predicts that by the beginning of the new millennium, some 100,000 children and teenagers will be orphaned because they lost one or both parents to AIDS. Nearly half of them will go to live with their grandparents, some of whom will be HIV-positive as well. More than a decade of the epidemic has spawned a great variety of myths -- among them, that AIDS does not enter the social circles of the white, middle-class, heterosexual majority, and that all people with AIDS are young.Because it is a sexually-transmitted disease, HIV/AIDS has become, in many circles of conversation, a subject that is off-limits. The only thing considered more taboo is the idea that older people have sex, and that they, too, may be vulnerable to contracting the virus. Sure, none of us wants to imagine our parents or grandparents engaged in a passionate act of coitus. Perhaps it is difficult to see the aged population in a sexual light because of our collective ideas that sex is for the young and virile. Thus, it is no great surprise that older people with HIV/AIDS are a neglected group.Until very recently, educators in the field of AIDS awareness have contributed to the myth that AIDS afflicts only young people by focusing their safe-sex campaigns primarily on youth. Despite growing numbers of HIV-infected people over 50, as yet there have been no AIDS awareness posters portraying people who suffer from HIV/AIDS with wrinkled faces and graying hair. Statistics from the American Association of Retired Persons reveal that elderly people who are sexually active are five times less likely to be tested for HIV and six times less likely to use condoms than younger people. Marie Nazon, a former social worker at Hunter College's Brookdale Center on Aging in Brooklyn, N.Y., organized New York's Task Force for the Elderly and HIV last year. She agrees that the elderly population have long been ignored on this issue. "Anyone who has sex is at risk for AIDS, and as we know, 90-year-olds have sex," she says matter-of-factly.Owen Borda, executive director of the Westchester County AIDS Council, agrees. "There is a great myth young people have that when you get old you stop being sexual," he remarks. "Anyone who's been on the floor of a nursing home, or in a geriatric ward in a hospital, knows that you don't stop being sexual until you die." Yet as sexual as older people are, they often fail to protect themselves from the disease, assuming they are somehow immune because of their age. Interestingly, despite the much-preserved myth that older people don't have sex, most elderly people with HIV/AIDS in this country become infected through sexual transmission. Homosexual men over the age of 50 comprise the largest group of people who have been diagnosed with AIDS in the older population, followed by IV-drug users -- most of whom are men. Moreover, 11 percent of all AIDS cases among people over 50 years old are women, and the figure is growing steadily. Of this percentage, one-half are minorities. An estimated 85,000 mid-life and older women in the nation have been infected with HIV. This population has steadily been on the rise in the past three years. Further, there is reason to believe that more older women may be HIV-positive than estimated. One recent study conducted by Columbia University determined that 8.9 percent of women ages 60-79 who live in high-risk communities are HIV-positive."There seem to be two major categories of elderly patients with AIDS," says Borda. "Homosexual Latino men and grandmothers." The term, "grandmother," he says, refers to women in their late 50s and 60s who have had children and have been in monogamous relationships with husbands who are IV-drug users. Often, they contract the disease through sexual intercourse. Women over 50 seem the most vulnerable in the elderly population for several reasons. Aside from inadequate education designed to raise awareness, post-menopausal women are more likely to become infected because of physiological changes. Drier vaginal walls increase the possibility for abrasions during sexual intercourse, thus giving the virus greater access to the bloodstream. According to research conducted by AARP, after menopause sexual desire increases in women and many tend to want to have sex more frequently since they are no longer at risk of getting pregnant. Since contraception is no longer needed, older women in relationships with men may mistakenly think they no longer need to protect themselves.Dr. Ernest Atlas of Norwalk Hospital in Norwalk, Conn., recalls a man he treated with AIDS who was 67 years old when he was diagnosed. "He was married for 43 years," recalls Atlas. "Once, he decided to see what it would be like to have sex with a man. His wife kicked him out of the house. He contracted AIDS and died a year and a half later."Emily Rudolph, a registered nurse at the Mid-Fairfield Hospice in Norwalk, Conn., had two older patients who died of AIDS in the last few years. "The last individual I treated was in his late 60s. He got AIDS sexually," says Rudolph. "He had been widowed. I never pressed him on specifically how -- whether it was that he visited a prostitute or something. He didn't know he was infected until he had surgery and he was tested. He was still asymptomatic. He was devastated. His children were devastated. You don't think that would happen to your parents."Rudolph says she also treated a man who was in his late 60s when he found out he was HIV-positive. "He was bisexual for the last five to 10 years of his marriage," she says. "That really blew the family apart. His wife knew, but his sons did not. I think his macho sons -- particularly -- are distraught over discovering how their father died." Rudolph says she has seen a few cases of AIDS in elderly individuals who are IV-drug users, but attributes most cases to sexual transmission. She admits most older people do not consider AIDS to be an issue of concern for them. "People in their 60s think, 'Oh, that's a young people's problem,' " Rudolph says. "They started out with a different ethic 30 or 40 years ago. The elderly are more resistant to education, but safe-sex lectures are certainly a good idea for the elderly or the young."If there remains any doubt as to the impact of AIDS cases among the elderly, consider a particularly disturbing statistic provided by the American Medical Association: In 1998, the death toll attributable to AIDS among older Americans will approach the number of Americans killed during the Vietnam War."People are sexual until they die," says Phil Christian, M.D., an HIV/AIDS educator who was interviewed on a recent AARP video designed to raise AIDS awareness among older people. "It may be uncomfortable to think of grandma and grandpa in a sexual sense, but it is a reality."Frequently, AIDS in elderly patients does not get diagnosed, because symptoms of the virus can often be mistaken for normal symptoms associated with aging. For example, there have been situations in which Alzheimer's Disease -- a common affliction among the elderly in which memory and brain function progressively deteriorate -- has been confused with AIDS-related dementia. Since AIDS is an assault on the body's immune system, it attacks an elderly person -- whose immune system may already be vulnerable -- with greater ferocity than it does a young person. Moreover, the drugs used to treat AIDS are often much more debilitating to an older person's aging body.Protease-inhibitors -- a new classification of drugs which have had excellent results -- especially take their toll on an aging person, according to Kathleen Nokes, a registered nurse and editor of a recently-released book entitled, HIV/AIDS and the Older Adult, published by Taylor & Francis. "These medicines cause significant problems to the liver and pancreas," Nokes reports. "Toxicity is an issue, especially if a person already has diabetes or kidney failure. Only a healthy person would be able to sustain such drugs."Despite the fact that AIDS sufferers who are now in their 50s and 60s came of age during the sexual revolution, some are not willing to openly discuss their sexuality or their illness."I think the generation gap is an issue," asserts Nokes. "You can't talk to an older person about HIV and sex the way you talk to younger people. They often become angry or offended. You must start with a very neutral topic, like their grand-children."Communication is an issue for both the educator and the older individual. While many of the older generation consider AIDS a young person's disease, those elderly people with AIDS who do seek counseling do not find the support systems they need. Even in group situations for those who are HIV-positive or who have AIDS, older people with HIV/AIDS complain that they cannot find empathy. "I don't think I have anything in common with younger people," says a 72-year-old HIV-positive man who calls himself George and attends HIV/AIDS support groups at the Jeffrey Goodman Care Center in Los Angeles. "Younger patients have a 'You've already lived your life' attitude."Susan Saunders of Fort Lauderdale, Fla., was diagnosed with AIDS at age 58. She is a mother of four and divorced from her husband of 30 years. She has been intimate with only one man since her divorce -- her longtime boyfriend. Healthy-looking, but with a compelling, serious face, she takes a combination therapy of AZT and protease-inhibitors. Saunders has already endured several AIDS- related infections."People in America don't want to talk about sex," she says. "This is a disease caused by sex, but we don't want to talk about that." Saunders says her diagnosis changed her whole family's life. "My second son is furious," she admits. "My other three kids are understanding. A lot of people are very prejudiced. My high school friends avoid me. They are afraid of me because I remind them of their mortality."She admits she feels isolated from other people who have HIV and AIDS, because she is female and heterosexual. Her present and all-consuming goal is to educate people her age. "Get tested," she advises. "Use a condom if you're going to have sex; use a clean needle if you're going to do drugs. If I can get it, anyone can."Nokes says there is an entire sub-culture of older adults who use IV drugs. "There are older people who have used heroin for 30, 35 years. They have a house, a family, a seemingly normal life," she says. "The culture of the older heroin user is that they just don't talk about it."The onslaught of the crack epidemic in the last few years has caused the street value of stolen goods to crash, thus making it more difficult for the heroin-addicted adult to acquire the drug, Nokes explains. "An older person might therefore become more desperate and be inclined to share needles," she says. "If they were able to sustain their habit by some illegal activity, or by just working, they'd be OK. But if they meet with a financial crisis, or they go into retirement, they may turn to less discretionary means."Nokes adds that one myth about drug addiction is that most addicts are homeless and destitute. "The majority of drug users are not on the street nodding out," she says.Homosexual men make up the greatest percentage of AIDS cases among the elderly. Some in this category inadvertently put their spouses -- most often women over 50 -- at risk. Having come of age in an era when homosexuality and bisexuality were not acceptable, some men in this age group are not open about their sexual preferences. Many have married, but engage in extra-marital affairs, thereby increasing their partners' risk for exposure to the virus.Growing up in a generation in which homosexuality was shunned is not the only reason some older homosexual men hide their sexual identity; culture is also an issue. Borda says that the Latino population tends to be particularly closeted, and some in the community live secret lives for many years until they experience acute symptoms of the virus. "They may have been infected in their 40s and they did not come for help until they were very ill," he explains. "In Latino culture, homosexuality is taboo. None of this is confirmed; no one has ever studied it, but it makes sense that they would be afraid their peers or their church would find out. They are not advocates for themselves, because they are afraid. Education is really important for this population."Sixty-one-year-old Rev. Howard Warren was in denial for years about his sexual preference. When he first discovered he had HIV, he says he was unable to speak to anyone. "It took me about two months before I told anyone," he said in the AARP video. "At night, I felt waves of panic, anxiety and fear. Along with that, I felt tremendous feelings of guilt and shame. But [after quite some time passed,] I read the book of Job, and I then realized that AIDS wasn't a judgment, a punishment of God, but a new path for me in the ministry." The majority of Rev. Warren's congregation now consists of other people who are dealing with chronic illness, confronting questions of their own mortality and receiving support from him and from one another.Carolyn Williams sits forward on one of the kitchen chairs in her apartment in rural Brooklyn, Conn. Her chin is propped decisively in her hands. She wears jeans and a T-shirt with the words "Together, We Can Make It" emblazoned on it in red lettering. A white sweater is draped over her narrow shoulders. She wears dangley silver earrings, and around her neck on a silver chain hangs a crystal given to her by a Native American holy man. "I always wear this," she says, fingering the stone. "I have become very spiritual."Williams attributes her spirituality to several significant occurrences in her life. Certainly one is living for 13 years with the AIDS virus. She has never had any AIDS-related infections and she takes no medication, except natural vitamins, homeopathic remedies and herbs. She does say, however, that her doctor has finally convinced her to try protease-inhibitors, which are known to reduce the virus to nil in the bloodstream. Williams' doctor has recommended a restricted diet which compels her to avoid flour products and to be a dedicated vegetarian.She meditates daily in her small apartment, which has a picture window and a serene view of the woods beyond. Stained glass and plants fill up the space in front of the window. A Navajo rug graces the floor. Evidence of Williams' newly-discovered creativity -- her paintings and drawings -- fill her living room. A collection of harlequin masks hangs on one entire wall of her bedroom. "I bought them during my first year of recovery [from heroin addiction]," she says. "I wanted them to remind me that my whole life I had always worn a mask."These days, Williams has a different attitude toward her life. She refuses to give in to the image of illness that is so often associated with AIDS. She travels around to local schools and tells her story, always educating and encouraging others to talk about their illness. "I am out there," she says. "People I know are not open about the virus because they fear the stigma. But the more of us who come out and talk about it, the freer they're going to feel. People think that everyone who has the virus is sick. That image has to change. I am completely free of secrets and I feel like a new person because of it. I think their silence makes them sicker."Williams admits she has felt isolated at times, particularly because of her age. Every summer she attends a week-long retreat at Camp Chrysalis in Camden, Maine, where she works mostly with children who have HIV and AIDS, and their families. She is known as "the grandmother," because she is one of the oldest people there with HIV. Yet, she says she has become a vital source of support for younger people with the virus.The discrimination she has had to deal with has been difficult, as well. The owners of the apartment complex where she once lived in Putnam, Conn., tried to evict her when they discovered she had HIV. After being off heroin for nine months, she says, the pressure drove her back to drug use. "I ended up overdosing and the doctors declared me dead," she recalls. "I really liked where I was; it was so peaceful and quiet. There were stars all around me. I finally felt loved for the first time in that place. I was really angry that they took me out of it."This near-death experience convinced her of a higher existence and caused her to look differently at herself and the disease, she says. Williams no longer fears death, and she believes this has kept her alive. "It took me four years to get to where I am today," Williams acknowledges. "It's a horrible thing to fight, but once you conquer it -- boy."Williams eventually won a lawsuit against the apartment building's owners. "I fought and won," she says triumphantly. "Then I moved," she adds, laughing.Williams' children are reluctant to accept that she has HIV. "My kids are in big denial about it," she says. "Just recently, they have accepted my going public about this. At 42, it was very upsetting for them that they lost me to drugs. They seem to think this is a problem of youth. That's not true." She says her grandchildren are aware that she has HIV. "Sometimes they'll look at me and ask me if I'm sick," she says. "Sometimes I have to stay away from them because they are sick."Despite the apparent positive changes Williams has made, she makes a point that she is not deluded about the seriousness of her situation. "Just because I have been healthy, I don't want people to get the wrong idea," she says. "Even though I haven't been ill, I know I have a disease that will kill me. I don't fear dying, but I sure as hell fear the process. I live with that fear almost constantly. I don't really think about tomorrow anymore."