Coping With ‘the Most Terrible of All Losses’ : Mothers of AIDS Patients Find Solace Among One Another
When Barbara Cleaver’s son was suffering from AIDS three years ago, she wished she knew another woman in the same situation--confronting a frightening and unfamiliar disease and agonizing over it as it progressively took the life of her child.
“When my son was sick, I wanted another mother to confide in,” said Cleaver, a Torrance resident who was working as a hairdresser in a Palos Verdes Peninsula salon.
She recalled her fears that she might lose her clientele if anyone knew her son--who lived in San Francisco--had AIDS. “I was going to work, but I was stretched, trying to be perky and up,” she said.
A few miles away in Rancho Palos Verdes, Mary Jane Edwards faced the same sense of isolation.
Edwards, the wife of an emergency physician at Daniel Freeman Memorial Hospital in Inglewood, said her son, who was a theatrical lighting and stage director, was in and out of the hospital and denied to himself that he had AIDS almost to the end of his life.
“I was sort of in limbo,” said Edwards. And after her son died in her home nearly a month after his last hospitalization, she said, “I had an overwhelming feeling that I had to tell my story to someone. I was hurting and I didn’t want this to spill over into my husband’s or my life.”
But the two women did not meet until many months after their sons had died, when Cleaver called AIDS Project Los Angeles (APLA), which provides AIDS education and services to people with the disease. Pleading “for another mother to talk to,” she was given Edwards’ phone number. And because they met, AIDS mothers no longer have to go it alone.
Last spring, the two were instrumental in organizing Mothers of AIDS Patients Los Angeles (MAP). The loosely structured group is patterned after one started in San Diego by Barbara Peabody, who last year told her son’s AIDS story in a book entitled “The Screaming Room,” a grim story laced with courage and hope for survival despite ever-worsening odds.
An early and very active member of MAP who lives in Valencia but asked not to be identified, said that when her son has AIDS, a mother becomes accustomed to going back and forth to hospitals, trying to find a doctor who can help, trying to find drugs that can help.
“We thought that with something like MAP, maybe parents would not have to struggle through finding out,” she said. “We know which doctors are working with AIDS, what drugs are in and what drugs are out. We can give people some answers.”
Cecily Kahn, supervising social worker at Daniel Freeman Hospital who has referred several women to MAP, said the group is able to help mothers “through the most painful of all losses,” the death of a child.
“Only another mother will understand exactly the kind of thing a mother is going through. They give help no one else can offer,” she said.,
AIDS, she said, has “dimensions of sadness and tragedy different from other kinds of illnesses.” Sometimes the AIDS diagnosis is the first inkling families have that their sons are homosexual or intravenous drug users, the two highest-risk groups for AIDS. And then, she said, because patients “tend to come back on a chronic basis . . . (families) have to watch their deterioration, which is a very painful thing to be a part of.”
Sally Jue, APLA mental health program manager who helped the mothers organize MAP, said it is vital for “family members to know they’re not the only families going through this” because without support for themselves, they cannot effectively help their child who is fighting for his life.
(AIDS, or Acquired Immune Deficiency Syndrome, which is caused by a virus, depresses the immune system and leaves the body vulnerable to numerous infections and cancers that it normally fights off. According to the county Department of Health Services, there have been 2,559 cases in the county and 1,560 deaths since the first AIDS diagnosis in 1981. Nationally, according to the federal Centers for Disease Control, there have been 29,435 cases with a 57% death rate.)
The heart of MAP is self-help and support for women caught up in the agonies of AIDS or trying to get over the pain of their child’s death.
“Women can say what they want, and it’s confidential,” said the Valencia woman. “Sometimes people only want to come a couple of times and say what they need to say. Sometimes they come back for emotional support. If they don’t want to talk, they don’t have to.”
BettyClare Moffatt , a MAP member who last year published a book about living with AIDS based on her son’s illness, said that when you are an AIDS mother, “you take care of your child, and you also are faced with ‘How am I going to work, take care of my husband, and go through my own inner feelings.’ ”
At a recent meeting, a woman said she was furious that her son--who almost died in September--was refused AZT, an experimental drug that stops the spread of the AIDS virus and is being given to some patients on a controlled basis. Others at the meeting said there are doctors who can obtain it and they would try to find them.
There also was a lively discussion about whether they should tell people their sons have AIDS or, as some have, say they have cancer. One said that outside of the family, it is nobody’s business, while another said she has no problem about being open, but her husband does.
“My husband says telling people at work would create problems,” she said. “He has not told a soul except his brother. I told him I am not ashamed, but he said he is.”
‘A Personal Choice’
Said one woman: “It should be a personal choice, but it is less of a burden the more you share. Dishonesty does eat away at us like a cancer.”
One woman, who is divorced, said she has encountered another problem. “Half the men I meet are afraid I have AIDS because I cared for my son,” she said. She told a story about the time she was walking with a man: “He said, ‘There’s a rhinoceros between us.’ I looked around and said, ‘I don’t see it,’ and he said, ‘It’s AIDS.’ ”
MAP also plays the role of advocate for AIDS patients, who, they say, are still stigmatized--losing jobs, homes and insurance--and treated badly in some hospitals. The women are pushing for more money for AIDS research and improved care for people who have the disease.
There are now about 20 MAP members, from the South Bay to the northern San Fernando Valley. Their telephones are busy daily, as they talk to each other and to AIDS mothers they know only as telephone voices: women referred to them by APLA, hospitals treating AIDS patients, and patients themselves. They also correspond with women across the country--and in one instance, Australia.
Moffatt said she visits mothers whose sons are patients at St. John’s Hospital in Santa Monica. “They call me when out-of-town mothers come in and know no one,” she said. “I come in and see them, and the first thing they say is, ‘People don’t understand,’ and I can say, ‘I understand. I had a son named Michael, and he died of AIDS.’ ”
Kahn, the social worker at Daniel Freeman, recalled one woman she referred to MAP. Her son was hospitalized several times, each time closer and closer to death. It was not until he was diagnosed as having AIDS that he shared his homosexuality with her and his grandmother.
“They accepted that,” said Kahn, adding that his mother continued to be the strength of his support until he died two weeks ago. “She has done quite well and is able to move on because of the support of other women.”
MAP has no budget, there is no fund-raising and no officers. APLA paid for the group’s letter-sized brochure and the women finance their own letter-writing and telephoning which, they say, can run as high as $200 to $400 a month. (MAP may be contacted at P.O. Box 1763, Lomita, Calif. 90717-9998.)
But the women believe the time has come for more organization. The group plans to incorporate, so it may begin formal fund-raising, and elect officers and a board.
One agency that refers women to MAP said this will be a step in the right direction. “It’s fabulous what they’re doing,” said Ron Rose, who is on the board of Aid for AIDS, a West Hollywood-based group that provides direct financial assistance to persons with AIDS. “Unfortunately, they need more organizing, which I can see happening. Actually, they would be able to help a lot more people if they had the resources.”
While reaching out to mothers, and anyone else in the family who wants help, the women also work with AIDS patients, becoming their second--or in some cases, only--mothers: visiting with them, cutting their hair, helping them pay bills, and dealing with the bureaucracy to get them on disability or medical aid programs.
MAP women say many families are caring, but one talked about abandonment. “There are a great many who have no one coming to see them,” the Valencia woman said. “Some families actually change their phone numbers so the kids can’t get hold of them.”
‘I Hugged Him’
Edwards recalled that after she gave a speech at a fund-raiser for an AIDS organization, several young men came up and asked her to send a copy to their mothers because it was important that they know what she had to say. “One said, ‘My mom is afraid to hug me,’ ” said Edwards. “I hugged him, and he said it was the first time a mom had hugged him in six months.”
She added, “We can help others learn to give them love, which is what they need the most.”
Women who have lost sons to AIDS say they stay active in MAP because it makes them feel better about a loss they will never forget.
“I find that people who do not talk to other people are still in mourning,” said a mother whose son died in 1985. “You don’t get over it. It just gets better, but for it to get better, you have to associate yourself with helping somebody.”
Pain Still There
Although her son died in September, 1984, Edwards said, “The hurt is still with me . . . there are some days when I feel his presence, and some days when I even get mad, and say, ‘How come you did something so foolish and went off and left me?’ Two years down the road and I still run the gamut of emotions.”
Cleaver said she suspects there are many other women who are still grieving after several years who could find help in MAP. “Some will still be feeling isolated because they have never shared with anyone,” she said.
Despite AIDS statistics, MAP members accentuate the positive, although some still shed tears when talking about their children. Some resent the presentation of AIDS in the news media as an automatic death sentence. “We try not to be negative or downbeat,” said Cleaver. “There is hope until hope is gone.”
Said one mother, “My son’s illness taught me a lot about living and a lot about dying. He was content with himself.”
Mother From Minneapolis
Tobie Starr of Minneapolis was a newcomer at the last MAP meeting, held in a Bel-Air living room with a panoramic view of the Westside. She said she came out to visit her son nearly a year ago and he was diagnosed as having AIDS a few days later. Except for a few trips home, she has lived with him in the Wilshire area ever since.
“We are bound and determined we are going to make it,” she said, explaining that her son has been hospitalized twice for Pneumocystis carinii pneumonia, a form of pneumonia associated with AIDS. She said his biggest problem now is fighting anemia and keeping his weight up.
“I would like to go back to MAP,” she said. “It was very rewarding to see so much love.”