Hospice `angels of death' become partners in survival

MAMELODI, South Africa -- Petunia Nkele Laka lay quietly in the bedroom of her family's four-room cement block home, the warm morning light pressing in.

At 23, she weighed just 57 pounds; AIDS had taken the rest. Death lay at her side.

Her eyes darted anxiously about the room, then settled on Linky Mathabe , 51, a nurse supervisor from a local hospice, who had just walked in. Linky approached slowly, as she could sense the young woman's fear. Also, her hope.

``I think I will get better," Petunia said, weakly.

``You are going to be OK," Linky replied, looking her in the eye. ``This is just a virus. You are stronger than a virus."

In homes like this, Africans, at last, are getting stronger than the AIDS virus.

Patients with access to antiretroviral drugs are gaining years of life, and the world of hospice caregivers like Linky Mathabe has been upended in a welcome, but also challenging way.

Hospice care, here as around the world, has long meant helping the desperately ill manage their pain and find a good death. But, increasingly, hospice workers in places like Mamelodi have become escorts back into life.

``We used to be the angels of death, but no more," said Mary Mothupi , 56, another Mamelodi Hospice nurse supervisor and Linky's frequent partner. ``We're keeping people alive now."

It amounts to a revolution in the way workers like Mathabe and Mothupi go about their jobs. Once the hospice workers referred almost all their patients to the hospital, where they died within days; now the caregivers do most of their work in patients' shacks and homes, bringing a message of life but also encountering all the entanglements and troubles and needs of the living.

One day that might mean tracking down a teenage runaway, or teaching parenting skills to young mothers, or demystifying the numbing paperwork of government bureaucracy, or defusing a family feud.

Sometimes, as well, they come just to sing -- or pray -- if that is the comfort needed.

The need for hospice care on the continent is immense, and will grow exponentially as more HIV-positive people become ill, a fact that African governments and foreign aid donors, like the United States, are slowly awakening to. Africa's first hospice opened in Zimbabwe a quarter-century ago, and there are now 140 throughout sub-Saharan Africa, or one for every 5 million people; the United States has 3,300 hospices, one for every 82,000 people. AIDS kills an estimated 2.4 million Africans each year, but increasingly, the story is about the many learning to live with the virus.

A Globe reporter accompanied Linky Mathabe and her co-workers over the course of 10 months -- and watched them contend with a world of sudden calamities: an overwhelmed mother who could no longer take care of her two HIV-positive children; an alcoholic father who was frittering away his monthly disability checks on beer; a 15-year-old HIV-positive girl who kept running away from home into a world of drugs and sex.

And Petunia Nkele Laka, too, who never failed to surprise.

Mamelodi is a sprawling township of roughly 2 million people, about 5 miles east of the South African capital, Pretoria, crowded with tin-roofed shacks and simple houses. The hospice, which serves about 250 people (220 with AIDS), is in a block of brick one-story municipal offices, a small oasis of quiet near the township's busy center, with its train station, minibus stands, and a street market that sells everything from cucumbers to cellphones. The township population is almost entirely black.

The hospice opened in 1994, the same year that white-minority rule and its system of racial separation known as apartheid gave way to multiparty democracy. Apartheid planners developed Mamelodi as a dormitory town for the city's black workers. The community still grows because of the proximity to the city, and the jobs there. Many residents here work in service positions, or as gardeners or maids for white families or for South Africa's growing black middle and upper class. For decades, Linky's mother was a housekeeper for a white family.

The hospice began with just three workers, who were trained in the basics of end-of-life care. Now, it has four rooms and 19 staff members -- all women, except for the driver. They have one van, one computer, one printer, and one fax machine, although no one knows how to work the fax, and the computer always seems to be turned off.

From this modest center, the hospice workers fan out into the community, where they do all of their work. They find patients mostly through referrals, which is how Linky met Petunia.

Petunia's family almost waited too long. At their first meeting in January, Linky learned that Petunia's CD4 count was 14. The count is a blood test that measures the immune system's capacity to fight off diseases; a healthy person's is 800, and health officials recommend that those infected with HIV start antiretroviral drugs once it dips below 200.

Two months after taking the medicines, Petunia was feeling better. She weighed 88 pounds; her cheeks were puffy, and she no longer expected death. ``I've put on so much weight some of my clothes don't fit me anymore," she told Linky.

Linky laughed. ``I think you'll live a long time," she said.

Petunia had suffered a stroke several months earlier, which doctors told her was related to AIDS. She had limited movement in her left arm and leg; she had used her right hand to paint teal fingernail polish on her left, but the left hand couldn't do the same for the right, leaving it unadorned. Despite her condition, she was planning ahead -- finishing 12th grade, going to college, and becoming a private investigator. She was adamant about the last point.

``I want to investigate rape," she said.

Several weeks later, Linky found out why: Petunia had been raped in 2001.

In her family's living room, Petunia told them the story in a halting voice, her lower lip trembling. Her anger flared only when she described how police did nothing about her complaint.

``You still need counseling, Petunia," Linky said.

``I cannot forget this," Petunia said, weeping.

But dealing with rape was just one of her troubles. At home, her father, mother, and grandmother descended, almost daily, into drunken fits of bickering and anger. Early one afternoon in April, hospice social worker Neria Ledwaba, 35, arrived at Petunia's house to talk to her about the rape. They were soon distracted by an argument in the living room.

Her grandmother, Violet Laka , 83, was screaming at her daughter-in-law, Wilhemina Laka , 50.

She held a glass of beer in her hand as she staggered toward Wilhemina: ``She doesn't do anything in this house!" the grandmother said. ``And she's always swearing at her daughter!"

The old woman threw the beer on Wilhemina, drenching her face, hair, and dress. Petunia hobbled outside to get out of the way. Wilhemina wept in her seat. The grandmother continued to shout. And the social worker stood between Petunia's grandmother and mother, flustered, not saying a word.

Several days later Linky talked to the three people about their drinking.

``I know, it's not good for Petunia," said Alfred Daka , Petunia's father, pouring himself another glass of Black Label beer. ``We will try our best to stop drinking. Just after today."

Linky, a mother of two, has worked for 26 years as a health professional -- 22 years as a hospital nurse. Mary, her frequent partner on the job, has 30 years of health care experience. They each earn a monthly salary of $900; others in the hospice without nursing degrees earn much less, about $330 a month.

Both joined the hospice recently -- Linky in 2004, Mary a year ago. And both liked working with the other. Mary, with her round face and sparkling eyes, has the softer personality; Linky was more intense. But both knew the key to their jobs lay in careful calibration of how to deal with each client.

``I feel I am a chameleon," Linky said. ``I keep changing my colors. When the situation demands it, I become tough, but I also become very, very soft when I need to be."

On one morning in February, they stopped by a house belonging to Thabiso Lebese , 37, an HIV-positive patient who also had rebounded after taking antiretroviral drugs. Family members told them Thabiso was spending his $130 monthly disability grant on alcohol, cigarettes, and marijuana, leaving almost nothing for his girlfriend or 5 -year-old son.

On the drive to his house, the two women decided they had to be stern and confront him, one after the other, like tag-team wrestlers.

Thabiso, extraordinarily thin and wearing a wool cap even though the temperature was in the 80s, greeted them with a wide smile, but Mary was all business.

``You know the meaning of the grant, Thabiso," she said. ``It's to look after you and your family. It's not a lot of money. You must use it faithfully. If you use it for the wrong reasons, there's a problem here."

``We would have to investigate," Linky said.

``If social workers discover you are using it for alcohol, they can take the money," Mary added.

``We are worried about you, Thabiso," Linky said.

Thabiso raised his hands in surrender, but the women weren't through.

``Don't disappoint us, Thabiso," Mary said. ``We want to be proud of you."

``Please consider that your family loves you," Linky said. ``It is why we are here. We love you, too."

``And don't forget to pray, Thabiso," Mary said.

``Pray for yourself and your family," Linky said.

With that, they drove off. A half-block away, they were laughing.

``He didn't have time to say anything," Linky said. ``But we had to be tough. Thabiso is naughty."

Mamelodi Hospice's guiding principle is to show HIV-positive patients that someone cares about them.

``They need that love," said Pauline Matalala , the longtime hospice director who retired in April. ``They are not outcasts. They are part of the community, part of the continent, part of us. If they have no clothes, we will give them secondhand clothes. If they have no food, we will give them food. If the family has no water, we must give it to them."

Once a week, the hospice invites its patients to the small headquarters. They call it ``day care," and provide a warm lunch and secondhand clothing. Scissors and magazines are handed out so patients can amuse themselves, creating scrapbooks.

One morning in March, Paballo Madisha , 15, entered the day-care session in a white halter top, snug stone-washed blue jeans, and with her hair shaved. The half-dozen male patients turned their heads toward her. Linky called her outside.

Paballo was among her most difficult cases. She viewed the young woman almost like her own daughter, but Paballo was rebellious.

``I have a soft spot for her," Linky had said earlier. ``Her home background is not OK. She's one of five children, so I decided if it was my child, I would want her in school. So I have had to push that for her."

Paballo, though, was not in school, and had recently run away from a ``safe" house for troubled teenagers outside Pretoria.

``Are you still doing drugs?" Linky asked her quietly.

``No."

``Not tempted?"

``No."

``Still going around with your friends?"

``No, I'm staying at home," Paballo said, looking off into the distance.

She was HIV-positive and frequently went around the township with other young women, who met men with money, drugs, and sex on their minds. In the seventh grade, she dropped out of school after learning she was infected. ``I was so stressed," Paballo said. ``I told myself, `Don't go to school. If my friends see me, they will know I'm infected and they'll laugh at me.' "

The young woman left to eat, leaving Linky worried. ``We just have to get her off the street quickly, or we'll lose her again," she told Mary. ``Paballo is giving me stress. I can't even sleep. I am so worried about her."

Mary looked with concern. ``You know, after families see that we do something, they start relaxing," she told her partner. ``But it's Paballo's mother's duty to see that Paballo goes to school. She's relying on you, Linky, to do that now."

``I know," Linky said. ``It's impossible for me to do it alone."

It wasn't unusual for the two caregivers to feel such pressure.

A few days later, they received a call from Gloria Macheke , a 25-year-old, HIV-positive mother of three children, who said she could no longer cope with two of them. Both were infected with HIV from birth and were always sick. The father had abandoned the family.

Complicating the situation was that a day earlier a health clinic nurse refused Gloria's request for antibiotics to treat the children's tuberculosis. The nurse had good reason: Three times Gloria failed to keep the children on the medication, raising the chances of drug resistance.

Linky and Mary picked up Gloria and the two children and drove to Stanza Bopape Community Health Clinic. The group went to the head nurse, who frowned at Gloria.

``For the sake of the children, we want them to go to a place of safety, to get treated," Linky pleaded with the nurse, motioning to Sharon, 6, and Sheila, 2. ``Both of them are sick. The mother has problems at home."

The clinic nurse's first response was to shout at the mother, saying that she was irresponsible, that she herself had endangered the life of the children. But she relented and signed papers for the children to go to another hospital, which would keep the children for their six months of TB treatment. After that, the children were to be placed in a foster home.

Outside the nurse's office, Linky slumped against a wall and smiled. ``Tonight, I will sleep well," she said to no one in particular. ``We accomplished something."

John Donnelly can be reached at donnelly@globe.com. Dominic Chavez can be reached at domchavez@globe.com