Working to preserve life Living with AIDS # 314

KHOPOTSO: That is particularly true for many who are ravaged by AIDS that conventional health services have given up hope of saving. This is often because testing for HIV has not yet caught on with most South Africans, so people find out about their HIV status when they are gravely ill. But, thankfully for some, it may not be the end of the road, says Sister Sibongile Mafata, co-ordinator of Soweto’€™s Mofolo Hospice.


SISTER SIBONGILE MAFATA: The introduction of antiretrovirals has really played a major, major role.


KHOPOTSO: Mofolo Hospice has more than 500 patients in its books, the majority of whom receive home-based care. Almost all of these are HIV-related ‘€“ a telling difference from the earlier conditions the hospice dealt with when it first opened its doors nine years ago.


SISTER SIBONGILE MAFATA: Yes, there has been a change in trends because when I first started in 1998 all the patients that we had in our programme were cancer patients. Presently, with these 500+ patients, I’€™d say 90% is HIV/AIDS patients and then, just about 10% or maybe 9% is cancer patients.


KHOPOTSO: Nonhlanhla Nyembe of Mofolo North was diagnosed with HIV eight years ago. In November last year she fell very ill and was admitted to the hospice.


NONHLANHLA NYEMBE: I survived from meningitis. I had a stroke’€¦ There was a time when I was feeling very bad. I couldn’€™t walk. I couldn’€™t do anything’€¦ I’€™m taking ARVs now’€¦ You know when you take ARVs, it’€™s all about AIDS now. I was diagnosed (with) cancer again. I’€™m surviving from all those difficult things, you know.


KHOPOTSO: She has lived up to her name, which means lucky one. Nonhlanhla is now an out-patient and goes to the hospice only once a week for a check-up and to participate in a support group, where she learns tips for survival.  


NONHLANHA NYEMBE: What I believe is that AIDS doesn’€™t kill’€¦The more you’€™ve got the stress, the more you have depression, the more you can’€™t even do other things. To avoid the stress you must be with other people. You must go to church. You must be around a lot of people and that thing will be out of mind. And if you’€™ve got a problem, you must speak out and you’€™ll find a way to deal with the situation.


KHOPOTSO: As most people with HIV and AIDS face social problems, including unemployment and poverty, Mofolo Hospice encourages those on the mend ‘€“ members of the support group – to participate in its income generation project.


NONHLANHLA NYEMBE: We’€™re doing shoes, beads, traditional things, sewing, whatever it is to keep our minds busy, to keep ourselves busy’€¦ We sell those things. Sometimes, we’€™ve got orders from tourists’€¦ They give us that little amount to thank us. It’€™s how we survive.


KHOPOTSO: Because of her improved condition, Nonhlanhla is classified as a Category One patient. Sister Mafata says it’€™s important to have such patients coming back for further assessment and support.


SISTER SIBONGILE MAFATA: We’€™ve got Category One – that will be a patient who has just minor symptoms, who’€™s not very sick. Then we’€™ve got Category Two – who’€™s got mild to moderate symptoms. And then, we’€™ve got Category Three. It’€™s a person who is very sick, who is bed-ridden’€¦ The patients who are Category One, we advise them to come to the day care, the support group. There is transport that is provided by Hospice, which collects them from their homes. So, on different days the transport will collect them from a different area of Soweto’€¦ They come here just to be with others, share with others whatever problems that they have, have ongoing education.


KHOPOTSO: Sister Mafata is happy that people like Nonhlanhla can have a second chance at life. She says, for those with AIDS, antiretrovirals have given a new meaning to palliative care. For a long time it has been understood as the process of preparing a patient for inevitable death. But not so, she says.


SISTER SIBONGILE MAFATA: (Smiling) Yes, that’€™s the concept that some people still have’€¦ You’€™ll find that some people would say, ‘€˜we don’€™t want to take our family member to hospice because when the person goes to hospice, it’€™s the end of the person’€™. It’€™s not true’€¦ Some people who come here come in because they were not getting proper care at home. They were not getting medication at the correct time. They were not eating proper food. So, you find that their conditions deteriorate. But we’€™ve had miracle stories. We had terminal patients coming out of this in-patient unit, going back home.      


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