When Sharon Bailey was young, she used to watch TV performer Loretta Young sweep through her double French doors, chiffon flowing, to introduce her program.
“The stories were always about her being rich and pretty in a suit or dress and going to help someone less fortunate,” Bailey says. “And that’s what I wanted to do, to be in a position to help other people in a real romantic, Hollywood kind of way. After I started with RAIN, I realized I wasn’t wearing the chiffon, but I was helping.”
RAIN is the acronym for the Regional AIDS Interfaith Network, a cooperative effort by churches, synagogues and other religious communities to provide non-medical help for people who have HIV or AIDS. Bailey, 46, is one of hundreds of volunteers across the country who clean, cook, run errands, talk, listen and hold hands with people who are living and dying with the virus.
And there’s nothing romantic about it. Bailey has found herself scrubbing floors, doing dishes and changing soiled linen for someone who was until recently a stranger. Sometimes the client is someone she would like as a friend. Other times, it is someone who is demanding and difficult.
The first client served by Bailey and her team of volunteers was the difficult kind. He was so angry about dying that he lashed out at nearly everyone who tried to help him. He had alienated nearly all of the social service programs in the community, even Meals on Wheels, and he depended on his RAIN team completely.
“He was a hard guy to like,” Bailey says. “He was very persnickety, and his family wasn’t interested in helping him, so we were the only help he had. We cleaned his house, we did his laundry, we bought his groceries. He fired some of the volunteers from cooking because he didn’t like the way they cooked. Some days he didn’t want to talk; some days he talked constantly.”
Anita Durrenberger, co-leader with Bailey of the RAIN team sponsored by the Missouri United Methodist Church here, says she is grateful for what she learned from that client.
“There were a lot of demands placed on us, but that was a reflection of his struggle,” Durrenberger says. “I was angry about it at the time, but I could face it with a lot more patience now. He was used to having so much control, and now he had none. I don’t think we understood that then.”
Other clients are a pleasure to help, and that makes their death all the more painful. Bailey’s second client was friendly to the end. “We’d go over, and there would always be people there, family and friends from the community. We had some really good times with him when he was still well enough to walk around and talk and laugh.”
Bailey was there when the client died at home with his doctor, friends, family members and other members of his care team around his bed. “His favorite Elton John CD was blaring in the background, and we all had a lot of time to crawl up on the bed with him and hold his hand and put water to his lips and talk to him,” she says.
Durrenberger also had a client she really cared about. “Being with him made me think of his losses, that this was someone who had been in the prime of life and I didn’t know him then,” she says. “You never know the person who was. You might catch glimpses of it, but you know them after they’ve been changed by this illness. I always think, `I wish I’d known you when you were at the height of what you used to be.’ “
There are more than 2,000 AIDS ministries across the country, most of them run by women. The RAIN program evolved out of work in Louisiana and Arkansas and has spread to Oklahoma, Oregon and Missouri.
For all of the volunteers, one of the tough parts is watching the client die.
“Everybody who’s in it is grieving,” says Susan Geissler, executive director of RAIN here. “We’re dealing with it as an ongoing issue. And it’s painful, but liberating.”
Bailey, who has had two clients die and is now working with a third, agrees. “When I meet our clients I know they’re dying, so I don’t get connected with them the way I might,” she says. “It’s still sad, it’s frustrating, I think about them and miss them, but I’m prepared or it. I believe that there are a lot of things worse than death, and AIDS is one of them. They’re so sick, it’s just a relief for them to die.”
As Durrenberger says, everything about the volunteer/client relationship is extreme. “You’re working with people and relationships that often are a lot more intense within a short period of time than relationships you would experience with other people,” she says. “It’s a time of sacred trust. You know you’re facing something with them that takes a lot of courage on their part. How do you help them through that? You don’t always. Sometimes they help you through it.”
Most of the people who volunteer for this type of work have known someone who has been touched by AIDS. Others simply feel that they are doing God`s work.
“We have a belief that if we call ourselves spiritual people, there is an obligation to conduct ourselves in a way different from the way a lot of so-called religious people do in the face of this disease,” Durrenberger says. “We find it outrageous that people can believe they’re morally righteous when they’re turning away from people in need.”
RAIN team members must also justify their commitment to family and friends, as must most volunteers. But with AIDS work, there’s a twist.
“It’s different from other volunteer work because it’s not just that people resent the time you’re devoting, there is also the ever-so-slight risk of transmission,” Geissler says.
Durrenberger doesn’t even worry about it anymore, she says. “I think in terms of universal precautions and remain sensible.” But Bailey admits that it makes her nervous. “Every time I’m around my client, I remind myself to be careful. Because as much of a good feeling as it is to help people, I’m still not sure they know everything, and I don’t want to be Miss Nice Guy and then get sick.”
Over the last two years she has learned to set limits. “When it gets to the bodily fluids part, and it did with our first client, I said, `This is too much,’ and the team leader said, `Fine.’ Being a woman and being a caretaker, it’s hard to say `no,’ but I`ve gotten better at it.”
Durrenberger, 36, has two children and is going to nursing school part time.
“It’s really a result of this ministry and the frustration I felt being with clients and seeing them suffer,” she says. “All I can do is hold their hands, and then you see the health-care profesionals come in and actually relieve some pain.”
But team members do relieve some psychological pain, and they certainly help with practicalities.
“The people who are drawn to this ministry are giving people,” Durrenberger says. “I think they’ve got more than an ordinary amount of courage and a willingness to stand up and do what they think is right.”
