“I had mental depression way back in 1994. I was so depressed and withdrawn I even suspended myself from work. It felt like people had lost interest in me. I even started hallucinating.”
But then Daniel Choshi (43), a vibrant and passionate home-based caregiver in the Capricorn district of Polokwane in Limpopo, recovered and started helping others who were mentally and physically ill.
He now teaches HIV/Aids caregivers — people who provide basic informal or formal nursing care to patients in their own homes — how to care for the sick, after he realised that caregivers needed to be “empowered with the right skills”.
Choshi was one of 456 caregivers who attended a workshop on depression organised by the South African Depression and Anxiety Group (Sadag), at the Mkhulu community hall in Polokwane this week.
The workshop was arranged after research, conducted by Sadag, showed that almost 66% of caregivers in South Africa were suffering from depression and only 6% acknowledged that they were depressed.
Friday brings another World Aids Day, and while some aspects of the disease are relatively under control in South Africa — such as the roll-out of antiretroviral treatment — the epidemic has created ripple effects of complex issues that go unnoticed.
One of these issues is the high rate of depression among HIV/Aids caregivers — the people who keep most of the more than five million people in South Africa infected with HIV alive.
Difficult job
Home-based caregivers look after between four and 15 patients, and can sometimes visit up to six homes a day.
Letta Makoela, a supervisor and trainer at Redeem Training Provider, an organisation in Polokwane that supports and guides caregivers, says being a home-based caregiver is a very difficult job because, among other hard tasks, “almost every day, [caregivers] are faced with someone that’s dying”.
“They [home-based caregivers] are exposed to difficult things. Sometimes patients still believe they are bewitched and the caregiver has to explain to them and say, ‘No, you are sick.’ Most caregivers are traumatised … they sympathise with the patient rather than empathise with them, and then caregivers take those problems home,” she says.
Lilly Kubayi (34), a caregiver at Phuthanany, a home-based caregiver organisation in Mankweng knows of such trauma from experience. There was a time when she couldn’t eat her food because she saw “blood and sores all day”. Now she can change nappies and bathe her patients without vomiting.
“Homes are not hospitals,” says Makoela, explaining how caregivers have to improvise with what there is at hand. To clean wounds, caregivers use boiled water with salt and to combat diarrhoea “without electrolytes or drips” they use boiled water with sugar and salt.
Keeping spirits high
During the workshop, when discussing the causes of depression, a woman says to murmurs of agreement from the mostly female gathering: “When you’re looking after a patient and they’re not getting better, it makes you depressed.”
But caregivers such as Choshi find ways of keeping their spirits high and avoiding depression. “You develop a friendship with your patient. If one patient depresses you now, the second patient you visit afterwards can heal you; maybe he’s feeling better and he all of a sudden greets you with a smile,” says Choshi.
For Gladys Mmurwa (38), a caregiver with three years’ experience, it’s returning home to her family that keeps her from depression. It’s her other home that depresses her — one of 15 homes for which she cares. It houses a family of five — a mother, father, grandmother, baby and an orphaned child that the family has adopted — who are all HIV-positive.
“The saddest thing is when one of my clients [the HIV-positive, 15-month-old baby] is crying and if she’s infected by the parent that’s breastfeeding her. I don’t like to see small children suffer,” she says.
Mmurwa visits the family’s home as often as she can and encourages the parents to “keep on condomising, avoid stress and eat green vegetables and fruit”.
“As I visit them, I feel like I’m at my place. I enjoy the company we share together and they are free to tell me everything,” she says.
Religion
Most caregivers are staunch believers in God and use the Bible to comfort both themselves and their patients. One caregiver said during the workshop that when patients hint at committing suicide, she tells them that “God is against it”.
Although depression groups such as Sadag do not encourage such a method — Sadag says it’s important not to make a suicidal person feel guilty — most of the caregivers at the workshop agreed. But when one is watching people die almost every day, questions — even to God — surface.
Soft-spoken Julia Dikobo (25), a caregiver who earns R500 a month, says it’s difficult when “you have to meet the chronicle disease [sic]”.
“You may end up questioning and asking, ‘This person is going where?’ Sometimes I tell myself there is God somewhere for this person,” she says, barely audible amid the chatting of hundreds of caregivers queuing for a chicken and pap lunch.
For many it’s the sense of belonging and doing something “to help the people” and to share “life’s soul with the sick”, as Dikobo puts it, that gives meaning to their work.
“They [patients] like the love we give them and they love us,” says Dikobo.
Others find it difficult to let go of patients that have touched their hearts in some way. Kubayi says she will never be able to forget a male patient she once had, calling him “a miracle”.
“He suffered from tuberculosis. Sometimes I would find that his wife wasn’t buying him food or feeding him. So when I arrived at the house he paid me a lot of attention. He told me I was his child, and then he passed away.”
Advice
At the workshop Sadag encouraged caregivers to stay away from thoughts such as “I can’t make a difference; nothing ever changes” and replace them with “I can change the system one person at a time”.
Choshi admits there have been many mornings when he has woken up and not wanted to take care of people. But if he speaks to someone about it — “Just phone a friend and say, ‘Eish! I’m struggling today. Can you fill in for me?'” — he feels better. “If you feel you are down, just be open, talk to other people and if they are up, they will try to pick you up as well.”
Sadag encouraged caregivers to start support groups (“sharing your experience and feelings with people with similar issues can help you”) and provided sign-up lists to start or join support groups at the end of the workshop.
The table that was used to sign caregivers to support groups was swamped; a sign that even carers need to be cared for.
The reporter was a guest of Sadag on the trip to Polokwane