Quality care up to the last minute

These days “Mama Khoza” spends most of her weekends at graveyards, not really to honour those who have already moved on, but as she puts it “to bury the cream of Mamelodi”.

“I told someone last week. We are burying the cream of Mamelodi – youngsters who are in the process of completing their degrees,” says Veronica Khoza, a retired nurse, who now runs Tateni, a community-based home care project.

Started in 1995, Tateni’€™s home-based care activities are aimed mainly at caring for the many people dying of AIDS-related illnesses in Mamelodi on a daily basis.

Despite never being able to find sufficient funding, Khoza and her group of retired nurses and volunteers are managing to care for over 400 patients at one time.

In fact, they are so successful that the Gauteng Health Department is now looking to Tateni to provide the answers on caring for the thousands of terminal AIDS patients.

“In our case it is not really home care for the AIDS patient only. We end up caring for the whole family. Also, applying for social grants, poverty alleviation, finding a place for the children who are orphaned when their parents die and caring for the elderly who are desperately trying to care for their young children ravaged by AIDS,” Khoza says.

“What can we do? People arrive here. They have lost their jobs because of AIDS. They tell us they are hungry and they don’€™t have a place to sleep.”

It all started in 1994 when Khoza, who was working for the Pretoria City Council, realised the services needed to become more home and community based.

“People were being sent home from the hospital after being told nothing could be done for them.

“We did an informal survey and found that there were at least 427 people who were chronically ill and at home in Mamelodi at the time. They were being left at home while the rest of the family worked or they were being locked in.”

“We (Khoza and a group of retired nurses) knew we had the skills and we decided to do it. In retrospect I realise it was an emotional response to the problem, but something needed to be done.”

Khoza started training young volunteers on how to care for patients. Some volunteers included young girls Khoza had found hanging around outside escort agencies.

Now Khoza also refers to her volunteer programme as poverty relief as many youngsters are unemployed and need the little bit of money Khoza sometimes manages to pay them or the cup of tea and peanut butter sandwich that she can offer.

Some of the youngsters have gone back to school to redo matric others have become nurses and social workers.

But AIDS has not passed this group by. Khoza has lost five volunteers to AIDS.

“They don’€™t tell you they are HIV positive when they arrive. But it doesn’€™t take long to pick up the signs.

Now Tateni is caring for 407 patients. “The unfortunate part of this disease is that the young ones don’€™t live long. Many of them die quickly due to depression, stress or hunger” she says.

People with HIV and their families come to Tateni in a number of ways. Many arrive in search of services having heard about Tateni from others. Formal referrals are also received from local clinics, general practitioners and the Pretoria Academic Hospital.

Tateni’€™s activities aim to complement existing health care services rather than duplicating or competing with them.

The family and neighbours become the primary caregivers with Tateni volunteers training them on how to wash the patient, relieve pain or dress wounds.

They also assist with the funeral arrangements once the patient has died.

Financial support for Tateni comes entirely from local donors and the provincial government, although this sponsorship is not guaranteed.

There is currently no national or international funding.

Donors sponsor the medicines and nursing materials dispensed by Tateni. “There are many times when we use old sheets to bandage bedsores,” Khoza said.

HIV/AIDS prevention, education and surveillance are also important parts of the Tateni work.

Before going home for a well-deserved rest at the end of the day, Khoza stops at a small house. She walks around to a room at the back where she visits one of her favorite patients.

Khoza bends over Tshepo ‘€“ “How are you today? You seem to be doing well,” she says, smiling and squeezing his arm.

Too weak to pull himself up, Tsepho (29) gives her the thumbs-up sign.

His brother Andries hovers in the background as Khoza dresses and cleans the painful ulcers on Tshepo’€™s genitals.

“He’€™s a fighter,” Khoza says, looking at Tshepo, her eyes filled with compassion. “When we started caring for him he was a living corpse.”

A former petrol pump attendant Tshepo was told five years ago that he was HIV positive. His wife has since deserted him, but he manages to care for his six year-old twin daughters, in a tiny room at the back of a house.

“What can we do? We have to keep going. Where is this all going to end? Who knows?” Khoza says.

Anyone wishing to contacts Tateni can do so on 012-805-7638 or 083-289-0288.

For more information on home-based care, see related stories below.

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