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Rubbing the stigma away with care
Di Caelers. 17 November 2003. The Star. Republished courtesy of Independent Newspapers (Pty) Ltd.
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There's little time for Mandisa Manina to dwell on her HIV status as she cares for her two children as well as her late sister's pair, struggling to make ends meet on a R700 monthly disability grant.
So when home-based carer Sindiswa Ngculu fills a tub with water and slowly cleans and massages Manina's swollen feet and legs in Manina's lounge, it's like a visit from a guardian angel.
Just that morning Manina, who is in the advanced stages of AIDS, woke up with such a splitting headache that she felt she couldn't lift her head off her pillow.
Up and about later in the morning after Ngculu's help, Manina says: "There's a lot of fear in people like me that if something happens to us nobody will notice. "I don't live alone, but for those who do, they fear they may die and no one would even know.
"And then the home-based carer comes knocking on your door, and you know you're not alone," Manina says.
Ngculu is one of a group of 16 exceptional women who visit HIV-positive people in Gugulethu and Langa regularly, usually three times a week, offering the essential care and concern that often turns around lives, building stamina along with self-esteem.
At the helm of this group of home-based carers is Sister Ency Litsoane, who explains that their existence is the result of a collaboration between St Luke's Hospice, based in Kenilworth, and JL Zwane Presbyterian Church in Gugulethu. St Luke's now has a satellite office on the church grounds.
Litsoane is showing off the work of her group to mark Home-based Care Awareness Month this month, and explains the depth of her job which involves her keeping close, daily connections with the 16 women who go out into the community, caring for and supporting hundreds of people with HIV/AIDS in Gugulethu and Langa. Together they assess the person's needs, and although they don't supply medical care, they do refer to either the local clinic, or in severe cases, to the St Luke's Hospice ward dedicated to the care of people with HIV/AIDS at Conradie Hospital.
"We used to work on the basis of referrals from hospitals and clinics, but since we joined forces with the JL Zwane church we've got in touch with so many more people who need our help.
"Word of mouth is also very powerful in this area where there are a few streets which have an HIV-positive person living in almost every house," Litsoane says.
They have also established a support group which has 92 members who get together every Tuesday to do gardening and beadwork in a bid to help supplement their incomes.
"We also try to empower these people, breaking that terrible dependency on the disability grant that is entirely lost to families when the HIV-positive person dies," she says.
Their youngest client is 17, a young woman from Langa, and the oldest is 54. The importance of the work of the home-based carers is more than evident as they gather in Manina's home, discussing her condition, her fears and giving her the footrub that offers her a little time to forget about the heavy responsibilities she bears every day.
Manina was diagnosed HIV-positive in 2001, three years after both her younger sister and her mother had died within a week of each other. Just a month ago her boyfriend died of AIDS after living with HIV for 13 years. One of Manina's brothers is in prison and the other is unemployed and lives with her in their mother's house, with the four children, aged nine to 19.
"It worries the children, especially the little ones, what would happen to them if I wasn't here. But at least they can see that everyone around us accepts my status and that there isn't any more of the rejection that was going on when I was first diagnosed," Manina says.
So it's absolutely understandable that she goes on to say that the homecarers play such a vital role. "If something's worrying you, you just wait for her to arrive and then you can discuss it and get the answers you need. It makes me feel less stressed, to have somebody to trust."
For more information about St Luke's Hospice, call them at 021 797 5335, or visit their website at: www.stlukes.co.za
Aims of the home visits:The healthcare worker may visit the home for a variety of reasons:
- To introduce themselves to the person living with HIV/AIDS and the family within a familiar environment.
- To explain to the person and the family the purpose of providing home-based care.
- To make an holistic assessment.
- To plan care and support by including the person living with HIV/AIDS and the family in all stages of the planning.
- To evaluate educational and training needs of the entire family, and to plan to meet those needs.
- To evaluate the need for human, material and social resources.
- To identify actual and potential problems.
- To assess whether other agencies should be involved.
- To manage pain and other symptoms.
- To identify children in distress and plan for their care and support.
- To identify actual and potential bereavement issues, and to provide necessary counselling, including after any death.
- To ensure a safe environment for the person living with HIV/AIDS and the family, including control of infections.
- To provide the best possible quality of life for the infected person, and to empower the entire family to become as independent as possible in aspects of care and self-care.
Rules for staying well:For people with HIV and Aids, diet is extremely important for good health. Here are a few basic rules:
- Make starchy foods the basis of each meal. Bread, porridge, pap, rice, potatoes, samp, millet, mealies, sorghum and pasta are relatively cheap, and supply a lot of energy.
- Use unrefined, unprocessed foods. Unrefined means, for example, that bread should be wholewheat, rice should be unpolished, maize meal should be stoneground. This kind of food is more nutritious than refined food.
- Use fresh vegetables and fruit, since they provide more vitamins and minerals. What is grown locally is better than what has to be transported over long distances, because it loses many nutrients.
- Add protein in the form of beans, lentils, peas, peanuts, soya, chicken and fish. These are low in fat, but give the necessary building material for the body. Sources of protein such as mopani worms might also be added.
- Avoid too much fat, sugar, colouring, preservatives and stimulants. If the person has thrush, sugar should be avoided. If a person is losing weight, the fat and sugar intake should increase. Also, avoid alcohol since it damages the liver and interferes with the absorption of nutrients.
- Use yoghurt, sour milk and other dairy products frequently. Eggs are also highly nutritious.
>- From Home-based HIV/AIDS Care (Oxford Southern Africa), by Leana Uys and Sue Cameron.
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