A "House of Life" cares for the dying

A TV music channel blares as a passing nurse swings her hips to pop rhythms, cheered on by patients in rickety hospital beds. At first glance Ikhaya Lobomi ("House of Life") seems to do its name justice but, on closer examination, it becomes clear that this is a place for the rejected and the dying. The intense smell of sickness mixed with the odour of decay lingers in the air of this AIDS hospice, located in the lush green Kwanyuswa area in the Valley of a Thousand Hills in South Africa's eastern province of KwaZulu-Natal. In one of the beds lie the remains of Mandla Ngcobo (not his real name), covered only by a white sheet. He died three days ago but nobody has come to claim his body, and it has now begun to fester in the 30ºC heat of the humid coastal province. Ngcobo's family refuses to be associated with a relative who died of AIDS. It is now up to the hospice to bury the deceased, but a funeral costs more than the volunteer-run clinic can afford. Until the next donation comes in, Ngcobo's body will have to stay where it is. "A private funeral parlour has to collect the body, which costs more than R300 (approximately US $46)," explained Zimele Mavata, a church minister, who runs the hospice with his wife Patience, a nurse. "On top of all that, we have to buy a coffin and pay for the funeral," he said. "Government-run mortuaries don't accept people that have died a natural death." Technically the municipality should provide for a pauper's funeral, but the sheer numbers of AIDS-related deaths has meant it has shirked that responsibility. Hiring a minibus taxi to take the corpse to a funeral parlour would not be an option, said Zimele. If a taxi willing to transport the body could be found, in addition to the fare, the hospice would also be charged the price of a goat to cleanse the vehicle of "bad spirits". Stigma makes it seem as if nobody in Kwanyuswa wants anything to do with the hospice. If Ikhaya Lobomi has an emergency, ambulances often deliberately ignore its calls because they know the patient is HIV-positive, said Zimele. Money is always a problem for a hospice run solely on donations. "Our bank account is always zero because, whenever we get money, a long overdue bill is waiting to be paid," Zimele told IRIN. The most pressing concerns are to pay water and electricity bills. Patience and Zimele have to make do with whatever is given to them. Sometimes the hospice sits with boxes of oranges but not a grain of rice, or with bottles of antiseptic lotion but not a single roll of toilet paper. Most donated medication has usually expired. If the pills are just a few months over the use-by date they can still be used, said Patience, but if they are just too old, she uses the organic ones as fertiliser for the garden. Most of the people who come to Ikhaya Lobomi have nowhere else to go. Few patients have visitors - their next of kin have abandoned them, as if ridding themselves of the burden and disgrace of an HIV-positive relative. Public hospitals can also discard people with full-blown AIDS on the grounds that "nothing more can be done for them", said Patience. The lucky ones find peace and caring at Ikhaya Lobomi in their last days; for the others, the only remaining option is the street. In the bed next to the dead Ngcobo there is a grey-skinned boy far too small for his age, his wide eyes full of apprehension - he has seen many beds fill and empty since he came here. "The child's health was improving, but he is traumatised by the many deaths he had to witness and now his status is declining again," said Patience. Another problem the husband and wife team have to deal with is that many of their poor and rural patients do not have identification documents. Without a death certificate the deceased's children cannot prove they are orphans, which in turn means they cannot receive government grants. "Most of these kids end up on the streets and become criminals," said Patience. Ikhaya Lobomi has 23 helpers whose only pay is food, some medication, and the knowledge that they have helped the desperate. In addition to the hospice, the Mavatas run a home-based care system with the help of 70 volunteers. "Our biggest wish is for the South African cabinet ministers to change roles with our volunteers for just one month, to feel what it's like to work day and night without pay," said Zimele. "The government always says we need volunteers to improve our country, yet they do little to support us." Patience and Zimele Mavata founded Ikhaya Lobomi in September 2001 with four beds in a former shebeen (beer hall). Two beds were donated by a nearby community, and the other two were the couple's own. Little by little, more beds, linen, dishes, medication and food were donated. Nine months ago the couple got permission to move the hospice to a bigger building on the premises of the Don McKenzie tuberculosis clinic, just a few kilometres away. They now have 21 beds and, for the first time, separate wards for men and women. When the couple first arrived in the Kwanyuswa valley several years ago, they recognised that the community was suffering from two major problems: they were poor, and lacked information and awareness about HIV/AIDS. "People were condemned for being infected with the pandemic," commented Patience, who recounted how she once saw a father berating his dying daughter for being a 'sinner'. God cannot forgive me because my father cannot forgive me, the girl told Patience. Soon afterwards she died. "That's when I knew we needed a quiet space, a hospice," Patience said.