Resources needed for caring for people living with HIV


Date: June 26, 2012
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Home based care is being seen a key strategy to care for people living with AIDS, yet the needed resources for careworkers to do their jobs are often lacking.

My name is Bongiwe Gwebu nee Dlamini. I am 32 years of age and married. I started doing care work in 2000. I cared for my in-laws who had both suffered a stroke.
At first, it was tough, because I did not know what to do. It was not until I got help from one of the nurses in Piggs Peak government hospital, who taught me what I should do when we got home, that I had any idea how to help my in-laws.
I would wake up early in the morning and do my household chores, then around 5:30 a.m. I would clean my mother-in-law’s room, cook her breakfast and draw water for a bath. I bathed her and fed her before giving her medication to her.   I used to feed my father-in-law and my husband would bath him. I washed both their clothes.
After the death of my in-laws, my sister-in-law, who was HIV-positive, developed AIDS and was bedridden.   I also took care of her until she passed away. I did this out of love. I looked at my husband’s family as if they were my own.
The love of caring for people grew in my heart, so I continued caring for people, especially those who were living with HIV/AIDS in my community.
Horo Clinic supplies us with disposable gloves and painkillers like ‘panados.’ Later on, I joined Membatsise Home Based Care organisation. There are more than 60 members in the organisation. In each constituency, there are 10 home-based care workers. Thembalethu Home Based Care organisation from South Africa funded Membatsise HBC.
Thembalethu Home Based Care group trained me towards the end of 2001 and it was my first training in care work. I learned how to counsel my patients to use condoms, to eat before taking medication and the importance of living in a clean room with fresh air. I also learnt how to wash their clothes and bath them.
I also learnt how to recognise the symptoms of HIV/AIDS and tuberculosis. Above all, I learnt to have love and patience towards my patients.
I have 16 patients: seven are in critical condition and two have died this week. I also have a 10-year-old schoolchild who is on antiretroviral medication. He is in Grade 3 at a nearby primary school. He stays with his grandmother when neither my husband nor I are able to pick him up on time.
I don’t have transport but I normally travel by public transport to take critically ill patients to hospital. People are dying here because there are no resources.
Last week, one of my patients died. I had to put her in a body bag and wait until morning so that she could be buried the following day.
We had to break a door from her hut in order to make a simple coffin. The nearest clinic-Horo Clinic-was too far away. Sometimes if a patient needs to go to hospital, we push her or him on a wheelbarrow just to get to the main road so that we get public transport to hospital. Normally, we take our patients to either Piggs Peak or Dvokolowako Health Centre.
I usually take three hours with each patient, but sometimes I end up taking more if that particular patient is in a critical condition.
I talk about care work in community meetings. They usually allocate 10 minutes to talk about this. Thembalethu empowered me because they not only provided training, but we were also paid monthly salaries of R250, with R50 for transport.
They also provided us with disposable napkins, gloves, mackintosh, body bags, soaps, jik, Vaseline, food package (power meal) with micro nutrients and medication. They also provided us with coffins. This happened from 2002 to February 2007.
As of now, Horo Clinic is providing us with some of the items but they sometimes run out of disposable napkins. In such instances, we then take an old blanket cut it into pieces then cover the patient. We don’t receive anything from the government.
Sometimes we are faced with difficulties because some patients don’t want to take medication. In other cases, the patient wants to take the medication, but they have no food to take with them.
Food is a big problem in almost all of the constituencies because we, the caregivers, end up having to provide our own food. This is often very difficult for someone like me who has so many patients.
Most patients die of hunger. It is very common for patients to take medication on an empty stomach. This makes the patient get worse.
In one instance, a colleague had to donate 20kg of maize meal while I donated money to take it for grinding. Fortunately, my husband is supportive, especially when I donate food to my patients.
One major problem of working as a caregiver is when you must wake up in the middle of the night to assist a patient. Sometimes you get men who do not want to take care of their wives and relatives and want to push them to us. They do not even want to touch patients who are in critical conditions.
I would be happy if government could recognise caregivers and give us compensation of at least R500 a month. They should also build a clinic at Timpisini and provide caregivers with medication and all the tools that we need. We need transport to ferry our patients to hospital.
I love working as a caregiver but without receiving basic resources or acknowledgement of the work we do, it is becoming increasingly difficult to serve patients.
This article is part of a special series created for the Gender and Media Southern Africa (GEMSA) Network’s “Making Care Work CountÀ campaign, and is being carried by the Gender Links Opinion and Commentary Service as a partnership in the campaign.


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