An Unnurturing, Uncaring Love : Some Families React With Anger or Denial

WASHINGTON — His name was John, and he had come home to tell his parents he had AIDS.

His mother was furious. “Don’t ever mention this again,” she said, stalking out of the room. “And don’t ever tell your father.”

Until the end, John’s family continued to engage in denial. They declared not only to their friends, but also to themselves, that he was suffering from malaria and would recover.

And they insisted that he was not homosexual.

They entered his hospital room clothed in protective gowns, masks and gloves and never touched him while he lay dying. They said things to him like: “John--you can’t die yet, you haven’t given us a son,” or “You can’t die yet--you haven’t gone to church and you’ll go to hell.”

Hours after his death, they sat in his hospital room, still wearing their gowns, masks and gloves.

‘Incredible Pain’

“There’s no question they were in incredible pain,” said Jaak Hamilton, a Los Angeles therapist who treated John and witnessed the response of his family. “They loved him, but it was not a love that was nurturing, caring or giving. They loved him, provided he would be what they wanted him to be.”

Such stories are not typical, said Hamilton and others who have worked with families of AIDS patients during the six years of the epidemic. But they do occur.

“More often than not, families knew their son was gay,” said Dr. Robert T. (Chip) Schooley, an AIDS specialist at Massachusetts General Hospital in Boston. “When they find out he has AIDS, the reactions range from sorrow to ‘I knew for a long time this was coming.’

“That reaction is rare, but there is an element in many families that AIDS was a risk people took by being gay. They forget or don’t understand that people didn’t even know this virus existed eight or 10 years ago. These sorts of feelings certainly don’t help people deal with an illness as severe and chronic as AIDS.”

Schooley said that some of his patients, alienated from their families for years, “feel they can’t--or choose not to--involve their families in their disease. Sometimes (the families) find out near death or after and are destroyed by guilt because they’ve never had the opportunity to reconcile the problems that have built up over the years.”

Such was the case with David’s younger brother, a homosexual black dancer who died in New York around Christmas, 1985, at the age of 43. He had been thrown out of the house when he was 15 for announcing that he was homosexual, and he never told his family that he was dying.

David, who asked that his last name not be used, said he learned of his brother’s death from his telephone answering machine. The voice on the tape was remote and strange: “David, this is your mother, and I want you to know about your brother. He died. ‘By.”

David, who stayed in touch with his brother sporadically over the years, recalled recently: “His lover had called my sister; she contacted my mother, and that was the message my mother left for me.

‘Wanted to Spare Us’

“There was a lot of sibling rivalry, but I loved him more than any of my brothers and sisters. So, when I heard he had died of AIDS, one of the first things that went through my mind was anger--that he hadn’t told us. But then, after I thought about it, I began to admire him for his courage. He had always made a life of his own. Getting that blow before Christmas was devastating for all of us, but we only got it once. We didn’t have to go through the long agony. I don’t know how we would have handled that. I believe he wanted to spare us.”

But David said that his mother, who is 74, still tells everyone her son had cancer. “I’ve argued with her that people should be honest about AIDS--that people think it’s a social stigma, like being black,” he said. “But she continues to say it was cancer.”

Last Christmas, on the anniversary of his brother’s death, David said that he “put a blues song on the stereo--’Death Never Takes a Vacation in This Land’--poured myself a big glass of Scotch and toasted him.”

Hamilton believes that most families, given the opportunity, will respond with love and support.

“I have found that about 90% of the families put aside whatever biases or fears or prejudices they have because the love they have for the afflicted adult child transcends all other feelings,” he said. “And almost always they are there to hold a hand, massage a foot, cry and say: ‘I love you.’ ”