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Kusinda Kwehlela: A Heavy Burden

My name is Nonzuzo Mbokazi I am a senior researcher on the Family Caregiving of Older Person in South Africa programme. A part of my responsibilities is sampling participants for the research study. One of the research study sites is KwaZulu-Natal, Nkanyezi. Nkanyezi is a rural settlement under the traditional leadership of Chief Ngwenya.

What has made me familiar with Nkanyezi is that my father was raised here. I frequently visited my paternal grandmother in this area throughout my life until her passing away in 2011. Nkanyezi can be considered a disadvantaged rural settlement; and provides us with a rural understanding of caregiving experiences of family caregiving of older persons. The site is predominantly IsiZulu speaking. I met with multiple members of 15 households. Care givers and care receivers were interviewed. In many households this involved two or more caregivers.

Due to Nkanyezi being ancestral land to my paternal family, and my paternal relatives having lived in the area for over 3 generations, some of the research participants recognised my surname and subsequently had some knowledge about family members and relatives who had grown up in the area. However, they did not know me at all. A social worker Sinawe Mthiyane who lives in the area and works in the rural settlement was able to share a list of six households with me. She had their permission to share their contact details with me. I then had to call the households to arrange a meeting date with them, on that date go to the households to introduce myself and the programme.

Nkanyezi as a rural settlement, is centred by traditionalism. Thus, there were certain protocols I had to observe, for instance, when you speak to a peer, they expect you to take them as a sister or brother. When you speak to someone by age who is a mother, father, grandmother, or grandfather, that is how you relate and engage with them; doing this shows an understanding of the setting and most importantly, respect.

What was stark for me in conducting this fieldwork is that caregiving for older persons not only affects the life of the care receiver, but it also affects the care giver and family. It affects relationships, as well as the overall functioning of the family. The care giving demands are strenuous, physically, mentally, emotionally, and financially. This piece will try to map out what contributes to these strains.

Water and Poor Roads – Impact on care receivers

Caring for older persons, requires water. A basic condition for care but something that is not guaranteed in all settings. It took 27 years for Nkanyezi rural settlement to have access to running water, even then, it is a very small pocket of people of the 155.68 km² area have access to running water. The project has been put on hold since March 2023. This is a very long time as local councillors had said the water instalment would resume in April; but the wait for running water in a large part of the community continues since 1994.  All the 15 households in this research did not have access to running water. The households relied on water delivered by a water truck, which delivers water in the area every Thursday (a collaborative effort of the Chief of Nkanyezi, and the Local Municipality). There are water points throughout the rural settlement, people use wheelbarrows to take buckets and other water containers to collect water from the water truck. There are some instances where the truck does not come, and people will have to rely on rainwater or collect water from a river nearby. The water in this river is unclean and used by cattle, so it cannot be used for consumption.

For older persons who need more water due to frequent linen and clothing change, this is often a challenge, and they must ask neighbours if they run out of water. In the Mhlangu household who participated in this research study, the care receiver was 90 years old, she was no longer able to use the toilet herself and often had accidents and this was a challenge. The caregiver Thoko explained that she would collect more water containers to accommodate for this (25 litres x4), and the usual number of containers they used to take is 25 litres (x8). This meant that Thoko had more containers to move to and back from the water point. She had added to this work by 4 containers. A total of 6 trips using a wheelbarrow. Luckily, there is no strict water allocation for households at least not yet.

Poor road infrastructure has been a challenge in Nkanyezi, 29 years after democracy, it is still something that local government has not been able to attend to. As a result, when people are sick and call the ambulance, there are certain areas the ambulance will not drive to due to not wanting to have a breakdown. Consequently, the care receiver in the Mntimande household, had to be wheel barrowed by her daughter, her caregiver, Zanele, to the stop of the ambulance when she was struggling with her health or if she needed to get to a hired car to access the clinic or hospital. The Mntimande house is at the bottom of a valley and is very rocky, and an ambulance had once broken down going to collect her.

As someone who had the opportunity to see this road and walk to the Mntimande home; I can say that the road is in bad condition and is not car friendly. I can only imagine the difficulty Zanele must face, wheel barrowing her mother up a hill to get to the ambulance.

Distance to the health facility

The clinic is quite far (approx. 20km) which means caregivers and older persons need to take a taxi to get there (costing R20) or hire a vehicle (at R100 round trip). For patients who need to get to the clinic in Sundumbili township, they must budget R20 from the rural area to the township, when they get to the taxi rank at the township, they need to take a taxi to the clinic which is R15. This is a R35 cost. If older persons need to be accompanied by a caregiver, it will be R70, the cost for two people.  These amounts may seem reasonable but for a low-income family, this is financially stretching as this money could be added towards food. Throughout the 15 households the cost of transport came up as a real challenge.

Scarcity of Medical Supplies

Medical supplies were reported as a challenge. In the Mhlangu household, if adult incontinence products for the 90-year-old care receiver ran out, sometimes the Community Health Worker (CHW) would not have them and must wait to collect the supply from Department of Health. This waiting could be up to 6 weeks.  This would mean the Mhlangu household incurring an out-of-pocket expense of borrowing money from a neighbour. The care receiver from the Mhlangu household Gcina passed away; I had the opportunity to touch base with her care giver Thoko a week afterwards and she shared that as stressed and anxious as she was towards the end of her mother’s life; she has a sense of relief that her mother is no longer suffering and having to cope with not having the quality of care she required especially incontinence products which can maintain her dignity. The CHW Nonhle was also interviewed, and she shared that she was aware that sometimes she cannot respond to needs of households as efficiently as she would like to, but this is because she also needs to correspond with the Department of Health; this is a stumbling block because the department is often overloaded with requests. The CHW also expressed that she was overwhelmed as the only CHW serving the entire Nkanyezi area, approximately 32,322 number of persons, serving not only older persons but also people living with HIV, TB, and Non-Communicable Diseases (NCDs).

My experience

Conducting this research in Nkanyezi has been a very emotional one, learning about the struggles of care receivers and care givers and the minimal resources which they must manage and cope with paints the grim picture that household’s live with and live by. Kusinda kwehlela, it is a heavy burden that these households need to carry to provide care for the older persons in their families to live a life with dignity while struggling with water scarcity, poor road infrastructure and the cost of accessing health facilities. I realised that access to basic infrastructure such as running water, roads and reliable health services is only the start of building a better care infrastructure. The absence of such infrastructure is experienced daily by care receivers and care givers.

NOTE: Certain information in this blog has been changed to protect the identity of those who have agreed to participate in The Family Caregiving of Older Persons in Southern Africa research study. 

This blog is in conversation with our Research Study, released in August 2023 and written by Dr. Nonzuzo Mbokazi 


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