June 2000

AIDS Care Teams at Work

By Trudy James

Although many people living with HIV/AIDS today have found renewed health and productivity from the new medical cocktails, others are living with debilitating side-effects from potent medications, profound fatigue, loss of their former productivity, and an uncertain future. Those who have survived while friends have died must live with ongoing grief, loss, and survivor guilt. In many communities, these challenges are compounded by stigma, ignorance, and fear. Depression and isolation are common problems.

An encouraging response to the ongoing afflictions of life with AIDS is the growing number of parish-based AIDS Care Teams in locations as diverse as Albany, New York, Laguna Beach, California, Austin, Texas, and Charlotte, North Carolina. Care-team programs recruit and train volunteers who work together in teams of 7 to 15 members. Each care team assists one individual or household living with AIDS; this is the team’s care partner. Some care partners are single men or women living alone; others are gay couples, heterosexual couples, or parents with young children.

Team activities include hospital visits, taking in meals, phone calls, dishwashing, rides, walks, helping care partners move, celebrating holidays, helping with children, going to church, just talking, greeting cards, phone calls, and a wide variety of food activities-potlucks, picnics, monthly dinners, eating out, brunches, and especially birthday parties. Especially the members of the teams listen. Through the presence and simple activities of the team, people living with AIDS receive encouragement, empowerment, acceptance, and hope. By their nonjudgmental presence, care teams represent a loving God to those who have often felt that faith groups believe they are sinful or being punished.

When asked on surveys which activities are most important to them, care partners mentioned things like “just visiting,” “encouraging me,” “the phone calls,” “taking me to the opera,” “going to a movie with someone,” “celebrating my birthday,” “knowing someone I can trust,” “someone to call for rides when I’m too fatigued to take the bus to my medical appointments,” “getting me outside,” “having real conversations,” “knowing there is someone to call in an emergency,” “attention for my children when I can’t get off the couch,” and “just hanging out.”

A care partner in Seattle, living with extreme fatigue, loss of friends, and increasing medical complications refers to his team members as “angels.” A young woman in North Carolina says, “Without them, I would not be alive today.”

Asking for help is difficult for almost all care partners (as it is for most people); they say they “don’t want to be a bother” or they “feel guilty about asking” -but they also say they get better at it when they see the warmth of the team members’ response.

Team members also tell of personal rewards and benefits:

  • Mary, a founding member of the growing care team program at St. Mary’s Episcopal Church in Laguna Beach says their four teams have “renewed the awareness of the parish of the ongoing AIDS epidemic and have also become a source of pride for our parish in the community at large.”

  • A woman in New York State says the deep relationships with fellow team members has been her reward.

  • “This is my way to seek and serve Christ in all people,” says a woman in Houston.

  • In Seattle a team with members from two Episcopal parishes recently held a 16th birthday party for their care partner, who has lived with HIV since birth and now struggles with both AIDS and cancer. “The phrase and many more had never been sung, or prayed, more fervently by any of us, writes a team member.” Being there that day, we felt that all of us and our care partners were God’s family to each other.

  • A retired woman on a team representing a small-town Episcopal mission in Arkansas sums up her service this: “thank you for this ministry opportunity. I would never have met our care partners if I hadn’t been on the team, and one of them became my closest friend before he died. I learned so much I did not know about AIDS. I learned so much I did not know about homosexuality. Most of all, I learned abut myself as a minister of God. I am very grateful.”

      • A parish can begin this hands-on ministry with one team or as a sponsor for a number of teams in the community. In many locations, Episcopal churches have led the way in AIDS housing and food ministries; now care teams are adding another option-an opportunity for lay people who want to do pastoral care. Teams are especially appropriate for today’s busy lifestyles: working as a team, each volunteer can make a significant different even though his or her time commitment may be limited.

      Medical professionals and social work case managers are vital to those living with AIDS, but they cannot become their friends. Some of those who suffer with AIDS were marginalized long before they contracted the virus by factors like racism, poverty, untreated addiction, or homophobia.

      Care teams fill the relationship gap; relationships are necessary to health and healing, and sometimes they introduce a quality of life never experienced before. Care partners themselves put it this way: “I didn’t know there were good people like them in the world.” “They give me a sense of belonging I’ve never known.” “They show me that it’s worthwhile to keep on living.” “I’m not just a sick person to them.” “I wish everyone in the world could be like them.”

      Episcopal care team resources in various regions of the country are listed below. Please feel free to call them with questions:

      Boston, MA: Peter Lee
      Albany, NY: Mike Losinger
      Little Rock, AK:
      Houston, TX:
      Laguna Beach, CA: Martha Davis

      NEAC board member Trudy James can be reached in Seattle, WA, at 206.767.4069 or at ConsultTJ@aol.com.