Daring to care

by C.D. Walter
Staff Writer
Prism Magazine, Spring 1993

Like a raging fire, AIDS devastates its victims, relentlessly reducing lives to rubble. But amid those ashes, a human spirit glows like live coals, igniting love and compassion in those daring to draw near.

Social work senior Bryce Reed took that dare. He volunteers two or three days each month to cook dinner and clean for AIDS patient Terry Bailey.

Reed works on a 12-member care team through Tarrant County AIDS Interfaith Network (TCAIN), which provides non-medical services for AIDS patients with a six-month or less life expectancy.

"I’ve learned a lot, Reed said. "here he is—very sick—and still determined to live. I’ve learned a lot about life and how different people look at life differently."

Reed also received friendship from Bailey. Though TCAIN volunteer training advises maintaining a certain distance, Reed believes it’s impossible to avoid closeness in these circumstances.

He realizes this friendship will make Bailey’s death more painful, but he is preparing himself for the inevitable.

"I really haven’t lost anyone close to me yet, but I think I’ll be able to deal with it," Reed said. "I try to visualize things happening and then maybe I’ll be more prepared when it happens."

Since his diagnosis in 1987, Bailey has reflected greatly on the subject of death.

"If you’re HIV-positive, you may as well say you’ve got AIDS," he said. "You sure can’t take a pill for it or a shot. It’s like signing your own death warrant."

Bailey prepared his will—everything goes to his companion—and his living will. "I don’t care to have some machine breathing into me when I’m not even alive," he said.

Bailey has faced death several times, once with an accidental Phenobarbital overdose and another time during a bout with pneumonia during which he shrank to 110 pounds.

"He amazes me," Reed said of Bailey. "I thought we were going to lose him. Since then, he’s gained weight. He has no T-cells. It must be his determination to live. Because he’s been through a lot." 
 
Bailey isn’t sure what is keeping him alive, though he credits medication. But he feels sure that no AIDS cure will be found in his lifetime.

"I had a friend who died in Dallas," he said, his eyes filling with tears. "We went to see him and he looked like a skeleton. I had to walk out. I knew I’d say the wrong thing, and I did. ‘How you been doing?’ Stupidest damn question you could ever ask." Seeing friends die forces Bailey to confront his own mortality.
 
"I like life, and I don’t want to die," he said. "But that’s the way it is. I’m more or less ready. I believe in God and Jesus, so they’ll take care of me when my time comes."

"Terry’s pretty stubborn," Reed said. "He likes to fool the doctors. They told his family he wouldn’t see his next birthday. Now he’s past that one almost to the next one."

Bailey turns 40 in September.

Death is the most obvious result of the disease. Victims live to see their whole ways of life transformed. They are robbed of dignity in a thousand little ways — loss of means to support themselves, loss of strength and physical beauty, loss of memory.

The most tragic loss is family and friends.

After announcing that he had AIS during a television interview, some friends from his small West Texas hometown turned their backs on him.

"I think they act silly," Bailey said. "All people do, unless they’re gay or they have AIDS. I don’t like that, but that’s the way it is in this old world."

Bailey said his mother has been supportive through the ordeal.

"I hate that I have to put her through this," he said. "When my father died, it almost killed her."

His father died of Hodgkin’s disease in 1956, when Bailey was 3.

Though his mother is understanding, the rest of his family took time to recover from the shock. Bailey’s older brother, a Southern Baptists music minister, was cold until a 50-year-old lady in his church was diagnosed with AIDS.

"I think it hit him pretty hard then," Bailey said. "He turned out to be a pretty nice person."
 
Bailey believes most people turn harsh because they fear catching the disease. "They think it’s going to jump right off me onto them."

But Bailey has more cause to fear them. With a T-cell count of zero, the common cold becomes an emergency. Care team members stay away when they feel the slightest illness. Reed didn’t see Bailey for almost a month while battling a cold.

AIDS patients watch carefully for signs of infection, particularly in the bloodstream. Pneumonia kills many patients who have no immunities.

"I don’t think I’d live through another case of pneumonia," Bailey said.

Bailey experiences side effects of both the disease and the medication, including sluggishness, muscle weakness, sensitivity to smells, hair loss and teeth deterioration. Retinitis pigmentosa is causing him to lose his sight.
 
"If I went blind, I don’t think I’d want to live,’ he said. "I wouldn’t want someone to have to lead me around."

A recurring theme in his conversations is the loss of independence.

"I’m lucky to have AIDS and still be able to do things," he said. "But I can’t walk far before my legs give out."

When he recently tried to help move a washing machine, Bailey discovered how much the disease has changed him.

"It makes you so weak. I used to life weights, so it kind of hurts my pride. When you try to go back to what you were used to, it just don’t work that way."

He tried to return to his old ways a few months ago when a medication made him forgetful. He got up every day and prepared to go to work, forgetting he no longer has a job. His companion had to send him back to change.
"I miss getting up and going to my job," Bailey said. "I’ve been doing it all my life."

The disease also affects the brain and nervous system, causing the most disconcerting of consequences — forgetfulness and confusion. Bailey’s overdose occurred when he took the drug twice because he couldn’t remember taking it.

Now his companion, "D," who asked to remain unnamed, prepares Bailey’s dosage daily in a little black cup.
If he can’t remember taking it, he looks to see if the cup is empty.

Bailey said he didn’t know what he would do without his companion to care for him. Nursing care costs about $70-$120 a day, according to Nursefinder administrator Maureen Buergler. She said her agency charges roughly $35 an hour. Twenty-four hour care could cost $840.

"For that reason, we teach family members and volunteers as much as possible about medical care to reduce costs," Buergler said.

D, who tests HIV-negative, prepares Bailey’s IV catheter, shots and medications.

"People carry on about how courageous I am," D said. "I don’t know if it’s a compliment or if they’re telling me I’m crazy. We fight and carry on like anyone else, but it’s the commitment we made to each other. He gave me the option to leave when he first told me he was sick."

D discovered Bailey’s illness six months after diagnosis when a seizure sent him to the hospital. When he arrived at Bailey’s hospital room, the stickers plastering the door and the cart filled with masks, gowns and gloves revealed the situation clearly.

"I figured he’d leave and that would be the end of it," Bailey said. But five years later, D remains, caring for him in a way paid strangers never could.

D, showing maturity for his 28 years, said it hasn’t been easy. AIDS has become their whole life, dominating every conversation. He said many friends find it depressing and quit coming around.

"You know the saying goes, ‘I wouldn’t wish this on my worst enemy?’ This is one of those things. It’s awful—emotionally and physically. And I’m not even the one who’s sick," D said.

They lowered their standard of living, moving into a trailer and spending carefully.

"But it’s been worth it if we can keep him out of a shelter," D said.

D appreciates the help TCAIN offers through its care team program. Though they don’t help with medical needs, their cooking and cleaning up while D works has been helpful.

"We worried that, since it was a religious group, they would come preaching and Bible thumping," D said. "But they’ve been great."

Though Bailey later joined the church that produced this care team, he did so without team member coercion.

According to TCAIN Executive Director Duane Bidwell, many volunteers consider their work a mission, though the organization is not evangelical in nature. During training, instructors tell volunteers to share their beliefs only if clients request information.

The main focus of the respite-care program is to help AIDS patients who are nearing death and their loved ones.

"We do a little of everything," Bidwell said. "Volunteers cook, clean, feed, diaper — anything to keep them (clients) out of the hospital so they can die at home if they want to."

Bidwell said TCAIN currently cares for 62 clients with about 350 care team members. Clients waiting for a care team fill a long list. "Sometimes people die on the waiting list," he said. "The demand is much greater than we are able to fill."

The organization also offers an HIV wellness program for newly infected people, and volunteer chaplains staff HIV clinics and hospital floors.

"What I like about our program is that it’s a community program," Bidwell said. "It works at a very humane level. And it helps the volunteer sometimes more than the client. It can promote spiritual growth—and personal growth."

But care team volunteering is not for everyone.

"There’s no dishonor in trying it and saying, "I can’t stomach this. It doesn’t happen often, but it has happened," Bidwell said.

Because Reed can handle it, he has the opportunity to know Bailey. "I think we’ve gotten to be pretty good friends," Reed said. "I’ve learned a lot about how people deal with things from Terry."

And Bailey has 12 new friends, including Reed.

"He’s a good person all around," Bailey said. "Me and Joyce (Palmer, another care team member) went down and heard him play. He sure can play them drums."


Author's Note: Terry Bailey died in October, 1993, about six months after this article was published.