A place of dignity and hope

A young couple, Patience Mavata, a trained nurse, and her husband Zimele Mavata, who was left physically challenged by polio at the age of four, describe their efforts to provide love and care to terminally ill people in their community in the Valley of a Thousand Hills, near Durban. The former shebeen (drinking hall) they are using is now called Ikhaya Lobomi – the “Home of Life”.

It was sometime in June when we realised there was a need for a place to keep ill people. We, and a group of volunteers, had been running a home-based care programme for some time, but we saw that it was not enough for us to visit them and leave them in the same environment, since we knew they needed 24-hour observation, love and caring. So a journey to find a suitable place for this particular work started. All our volunteers were ready but we couldn’t find a nice place; also we did not have money to rent or buy a place that we knew was needed.

We ended up meeting a lady to negotiate about her old building. She told us that the place had been a shebeen before. She said she appreciated what we were doing but she laughed at us because we had no money or anything to start with, but she agreed to let us have it temporarily. The Hillcrest AIDS Centre was helping with funding proposals. We managed to get some beds and Entabeni Hospital gave us some linen.

We were not discouraged by the state of the building but looked forward to making ends meet. The local chief, the community, and others helped to carry out some repairs. Everything was restricted here, including the use of electricity, because the card finished very quickly, but we knew that candles would make it. What about food? They would share from ours. A toilet? We had to buy some blocks and other things bit by bit and build a long-drop. We had a tap for clean water, a toilet, one bedpan, four beds and linen, so we started straight away by admitting the first patient at the beginning of September 2001. So our plan was implemented and we were all very happy that we had made it.

Now we faced different kinds of challenges. More money was needed to run it and I was out of work because of my pregnancy, and my husband's disability grant, which had been stopped for a while, had to be renewed. But we carried on because the need was there. This place met a demand because many people needed it. Our first patient was discharged in a very satisfactory condition, but there were still others. We then, started to encounter a problem that patients came in drinking only glucose and water; the next day they wanted porridge and the day after chicken! This was discouraging, but also encouraging.

We found that others were dying. But, thank God, they were dying with dignity. At least they had received caring and love. Hope for the future of their children blossomed. They were not scared or restless, because they knew that, since we had kept them and loved them, we were also going to try to help their children. So they rest peacefully.

There are different reasons for people needing accommodation with us. Sometimes, for example, it is environmental. The person is sick but must stay in a polluted environment, sleeping near the fire made for cooking; they might be dysphonic (having difficulty breathing) and hungry for clean air but their lungs are being filled with smoke from the wood; or they may have a fever and all the windows are closed – or maybe there are no windows – in a very dark room. For others it is because of isolation. They may be left by themselves when others are rushing somewhere – and forgetting to give them a bath or to clean them when they have soiled themselves. They lose their dignity by finding themselves being given a bed bath by a 13-year-old boy. What a trauma for the child too!

So pressure was on us to enjoy taking this old shebeen: a place that was dangerous but is becoming a resource for many families and a .place of guidance Although we don’t have much, we can still use our hands and minds. We can improvise. We can allow our brothers and sisters to die with dignity and we can offer some sort of hope to our community. They know that Ikhaya Lobaini – the Home of Life – is a real place, a real home for them and their desperate families. It is a place of life reconstruction, because our plan is to assist in decreasing illness in the Valley of a Thousand Hills and in KwaZulu-Natal. Maybe the whole of South Africa can do the same.

This feature: ChildrenFIRST vol.6 no.41 February/March issue 2002