Hold Back the Night : Whether it’s a hand to hold, a massage, a soothing voice or an attentive ear, Night Light volunteers offer bedside comfort to those dying from AIDS.
There are dark moments in the middle of the night when Jay Nagoshiner, an AIDS patient, cannot sleep. There, alone in bed, he wonders if he’ll wake up in the morning.
On this particular night, those worries are allayed by two bedside visitors.
One, a tall woman in a dress, climbs next to him in bed and begins to massage his temples, then his hands and his feet. The three share a bite of corn bread.
Hours later, he thanks his guests for their thoughtfulness, and they hug goodby. A smile crosses his face when they promise to return.
Nagoshiner’s companions for the evening are not relatives or even close friends, but volunteers from Project Night Light, a pilot program at the Los Angeles Center for Living in West Hollywood. There, about 50 people are learning how to comfort patients who are terminally ill with acquired immune deficiency syndrome.
Sometimes that means giving a back massage or listening with an open mind. Other times, it means staying by someone through the night or holding them as they near death. Although the “night lighters” stop short of offering medical services, they do provide human contact to people who might otherwise die alone.
“People need guidance in the last moments of life,” says Night Light founder Cassandra Christenson. “We need to embrace death, not fear it. And we must honor the dignity of one who is ill.”
Although several organizations in Los Angeles County provide home health care for AIDS patients, most have difficulty keeping up with their clients’ psychological needs. Social workers provided by groups, such as AIDS Project Los Angeles, are often overloaded with 60 or more clients.
Project Night Light, though it is small, is helping to relieve some of the pressure. It now serves about a dozen people in homes, hospitals and hospices. Christenson hopes eventually to serve 100 people. She envisions 200 volunteers, along with members of local community organizations, churches and synagogues, providing round-the-clock attention.
Clients find out about the program through the Center for Living, through referrals from various AIDS organizations or by word of mouth. Because the two-month-old program is so new, many AIDS groups do not know that it exists.
For Nagoshiner and others, the program has been a blessing. Night lighters have made a number of visits to Nagoshiner in the hospital and at the hospice to which he recently moved. On some visits, they have talked and joked with him. Other times, the volunteers have given him massages.
Nagoshiner, 37, said he appreciates the respect shown by his visitors. His conversations with them about death have helped relieve some of his own fears, he says, and rejuvenated his spirit.
“It’s nice to know that someone is here out of love, not out of pity or because they’re being paid,” Nagoshiner said. “There aren’t too many people you can call at 4 o’clock in the morning to hold your hand. The night lighters will send someone. I always feel better after they’ve been here.”
Visiting clients also has a profound impact on the volunteers, who describe their work as intensely spiritual. Many speak of the elation they feel.
“I see myself as a surrender partner,” said Susan Rome, an actress. “I choose to spend time with this person because his fight gives me courage. Even though he is full of fear, he is so lovely, so full of dignity.”
The work also allows many to explore hidden memories and fears. For others, it helps settle emotional scars from past losses. Most of the volunteers, such as Jay Harris, say they are learning to confront their own feelings toward AIDS and death.
As director of a Westside mortuary, Harris deals with dead bodies and grieving families every day. His duties, however, demand that he remain detached from the people he serves. He joined Project Night Light in search of an emotional connection to death.
Harris is the only one in the group to stay overnight with a client so far. The experience, he says, gave him butterflies at first. Harris gave the man a massage, and they looked at photo albums in the middle of the night. Harris changed the man’s diaper the next morning.
“I want to be involved with people while they are in the process of dying,” Harris said. “For the first time, I’m asking myself if I can be there for this person and do what he needs in the last moments of his life.”
Not all the participants are so accustomed to death and dying. For some, a first-time visit can be unnerving. When Judy Courtney, a Los Angeles casting director, made her first visit, she found her client incoherent, sitting in a pool of diarrhea beneath his dining room table. She recalls being terrified and uncertain of what to do or say.
“I wanted to make even a moment of this man’s life better,” she recalled. “I feared that I would not be able to provide for him. I felt inadequate.”
The Night Light group meets every Thursday night to discuss such reactions and to allow participants a chance to tell their personal stories. Some speak of near-death experiences. Others speak of loved ones they have lost to AIDS. The meetings, accented by candles, take on a spiritual tone.
They also are educational forums, part of a three-month training process. Each week Christenson, a registered nurse, teaches the group something new about caring for AIDS patients. At a recent meeting she covered safety precautions, handing out rubber gloves and showing participants how to protect themselves from open sores on their clients.
Another week, she taught the group about legal documents, including wills and durable powers of attorney. The volunteers suggest to their clients that they take care of such legal matters. Perhaps most important, the group is exposed to new perspectives on death.
“Maybe it’s a passage, like birth,” Dan Butler, a participant, said during a recent class. “Yes there is the sorrow of someone leaving. But what if it’s good that their suffering is relieved? Who knows, maybe we choke off death because we don’t know where it is leading us.”
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