A staff member of the Soweto Home Based Caregivers Cooperative cares for an AIDS patient at his home in the former township. |
A group of mostly women caregivers in
Two women from the Soweto Home Based Caregivers Cooperative were in
On going funding for the group since 2004 has come from the Primate's World Relief and Development Fund, and a group at Christ Church Cathedral in Vancouver took on the job of raising $96,000 to build a proper clinic in the Jabavu district of Soweto, an area of former segregated townships now incorporated into the city of Johannesburg.
Currently the cooperative's 30 staff and volunteers operate out of a four meter long shipping container, equipped as an office. They visit some 250 patients daily, bringing medicines to relieve suffering of often terminally ill victims of the HIV/AIDS. About 100 are too weak to feed or bath themselves.
The coordinator, Mabel Mashego, said that much of the work is sitting down and being with their very sick patients, and allowing them to die with dignity..
"I tell them, 'I love you - and will always love you till the day you die," she said.
A container wwith offices of the cooperative. Purchased with the assistance of the Canadian International Development Agency, it should soon be replaced. |
The cooperative works with the nearby city government-run Jabavu Clinic. Each day the caregivers start at the clinic picking up the medicine for their patients. The day is spent visiting up to a dozen people in their homes.
The need is overwhelming - the caregiver's caseload has more than doubled in the last few years. There is still a huge stigma attached to the dreaded disease. "Many people are dying because they are so scared to come to the clinic and get medication."
The public perception of HIV/AIDS has not been helped by the attitude of the South African government, which for years denied it was a serious problem. And it affects the caregivers.
Matshidiso Letladi said that many
The cooperative actually began with the need to treat people suffering from tuberculosis, said Mashego. "My elder brother had TB in 1997. He had a problem when his medicine ran out. I needed to go to the clinic so I could help him." (Her brother did recover.) Likewise Letladi got involved when a close relative was sick.
The two women and others in 1998 formed a cooperative - an idea which came from a Canadian working in
Almost all the work in the early days was a volunteer effort. In 2004 the Primate's Fund agreed to grant the cooperative $35,000 a year on a continuing basis, which has been funding for 15 people. Even in
Matshidiso Letladi and Mabel Mashego of the Soweto Home Based Caregivers Cooperative told of challenges in |
Now that the funding for their own small clinic is in place, a contractor and architect have been working on plans. City building permits have taken longer than expected.Once built, the group will have more than office space. They'll have one or two consulting rooms for patients and nurses, a meeting room for training workers, washrooms, and space for patients to come and stay for a while during the day - getting out of their homes.
The new centre should allow the group to apply for and obtain retroviral medicines that can slow or even stop the progress of HIV/AIDS. But these very powerful drugs have to be combined with proper nutrition and education.
"The problem and its solution are more complex than just giving drugs to people," said Zaida Bastos of the Primate's Fund, who accompanied the
"The root cause of all the HIV/AIDS in
Many challenges remain. There is a need for posters and manuals for education. "We need female condoms, but they are very expensive. Most of the men don't want to use a condom. It's just better for the women if they can get female condoms," said Mashego.
And there is lots of stress on the caregivers. "We need time to do in-house training, to tend to our spiritual needs, to debrief."
Still, in the face of often overwhelming problems, the Soweto Home Based Caregivers Cooperative continues on - with Canadian and Anglican assistance.
"It's hard when I just look at suffering and can do nothing," says Matshidiso Letladi. "It helps me when I am able to help."
For more information about the Soweto Home Based Caregivers Cooperative contact the Rev. James McCullum, chair, the Cathedral's Justice and Peace Unit, 604 682-3848, or Peter Goodwin, diocesan PWRDF chair, 604 985-1688.