The Wall Street Journal - July 22, 1996
Marilyn Chase

The AIDS epidemic has cast a new light on this universal condition. Because it threatens adults in their prime, AIDS has thrust millions of friends and loved ones into intensive care-giving a generation ahead of schedule.

During the 11th International Conference on AIDS in Vancouver, care-givers talked about how to sustain this difficult and draining role. Many say they discovered a strength and a competency for caring that they are using outside the epidemic as their parents or others fall ill.

Care-giving isn't just hand-holding. It embraces everything from moral support to practical chores such as cooking and cleaning. It can be spiritual or as mundane as chicken soup.

Mental-health expert Robert Washington of the St. Francis Center in Washington, D.C., says the essence of care-giving is leaving your agenda at the door and "being present" for whatever a person needs. He says this tells them: "You're important enough for me to walk this journey with you."

As executive director of the Gay Men's Health Crisis in New York in the '80s, Rodger McFarlane forged new skills answering hot lines and visiting the bedsides of stricken friends. He mastered a repertoire, including "arguing with doctors, filing insurance claims and talking to lawyers."

When his father fell ill with heart disease and cancer in Alabama, Mr. McFarlane took his expertise back home. Rallying his family and borrowing tips from hospice nurses (like melting Compazine in the breakfast grits), he enabled his father to die in comfort at home.

"I was able to give it back to my family," he says. "I realized everybody goes through this. I was, ironically, fortunate to know what to do. I never felt more capable and useful in my life."

MR. MCFARLANE'S belief that the care-giver's art can reach beyond the particular tragedy of AIDS is articulated in "Everyday Angels: A No-Nonsense Guide to Caring for the Seriously Ill and the Dying," (Simon & Schuster) due out in January.

Sharing his skills had another bonus for Mr. McFarlane. "Passing it on," he says, "was the only way to make sense" of the epidemic.

Charles Garfield, who has lectured and written on the psychology of care-giving, founded San Francisco's Shanti Project of volunteer support for AIDS patients. He then went on to work with a group, Kairos Support for Care-givers, that focuses on the needs of the care-giver.

A psychology professor at the University of California School of Medicine, Dr. Garfield says one of the subtlest skills is knowing "when to encourage someone to fight for life and when to accompany them to death's door."

Spencer Cox, a 28-year-old New York AIDS activist, concurs. "The hardest part of care-giving is that it's not like `Love Story,' where someone gets sick, worsens and dies. It's unpredictable. You roll with it."

But care-givers themselves need care, too. Replenish yourself in the midst of grief and fatigue, before your empathy runs dry, was the advice offered by many during the Vancouver conference.

M. Lyndon Haviland, a program coordinator at Columbia University's School of Public Health, said the hardiest volunteers learn to break down their mission into small acts of care -- like preparing a meal -- rather than hurling themselves against existential brick walls.

Care-givers who neglect themselves face a spectrum of ills, from exhaustion and depression to burnout. "Burnout" occurs when a care-giver slips beyond exhaustion or depression into a state where he or she is "depersonalized," or past caring, says Ms. Haviland.

"It's really a reaction to repetitive stress," she says. Where some care-givers burn out, others get too involved, losing their boundaries, and neglecting themselves. "This person's dying, so where do my needs fit in?" she hears care-givers say.

CARE-GIVERS NEED to know how to delegate tasks, when to take breaks and vacations and how to obtain counseling or care for themselves when needed. "Breaks and vacations help you return to care-giving with a full heart," says Ms. Haviland.

Mr. McFarlane says he learned to spread around the work. Swimming, rowing and running help him recharge his batteries.

Yvette Perreault of Toronto says care-givers survive their losses by "constructing new meaning in the midst of sorrow."

"I don't wait for a better world to occur," she says. "Now I plant my bulbs in the fall and I take joy when they come up. You can harden around grief or you can soften."

The work has dividends. At 40, she is now helping her 63-year-old mother say goodbye to her 92-year-old grandmother. "She didn't know what to do, and I did," she adds.

Dr. Garfield founded Kairos Support for Care-givers in San Francisco to heal "wounded healers." AIDS service organizations in many cities also offer assistance.

Diverse care-givers' needs are addressed by groups like the American Cancer Society, American Diabetes Association, or American Heart Association. Likewise, relief may come from groups such as Catholic Charities, Jewish Family and Children's Services, the Well Spouse Foundation in New York City and the National Family Caregivers Association in Kensington, Md.

960722
WJ960713

Copyright © 1996 - The Wall Street Journal. Reproduction of this article (other than one copy for personal reference) must be cleared through the WSJ Permissions Desk.

Always watch for outdated information. This article first appeared in 1996. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1996. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .