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A caring lifeline


Arepacho home-based caregiver Lilita Sitoe visits Marta Ernesto Mandlate at least once a day to make sure she is taking her medication and eating well. Photo: Joel Chiziane/OxfamAUS

For many people living with HIV, ignorance, isolation and loneliness can kill quicker than the virus itself. But in Mozambique, home-based caregivers are making vital connections that are saving lives.

“If this caregiver hadn’t helped me, today I would be dead. I would actually be dead.”

Marta Ernesto Mandlate, 52, lies on a blanket on the floor of the small two-room house she shares with two of her six children and a grandson in the neighbourhood of Fidel Castro, on the outskirts of Xai Xai, Mozambique.

Today is not a good day for Marta. Diagnosed with HIV two years ago, she is feeling unwell and finds it difficult to turn from the position where she rests. Her caregiver, Lilita Sitoe from our local partner organisation Arepacho, sits beside her, holding her hand, wiping her forehead with a cool cloth and giving her some water to drink.

While Marta appreciates the care, comfort and support that Lilita provides, it’s the companionship that she values most.

“She visits me every day and sometimes twice a day. I really appreciate this because I am here lying down and I don’t have anyone to talk to,” Marta says emotionally wiping tears from her eyes.

It is the all-consuming isolation and loneliness that comes from living with HIV — and the fear, stigma, discrimination and ignorance that accompanies it — that is the real killer.

“A sick person living with HIV needs a lot of company,” Marta’s daughter Arselia Joao Nboane, 22, says, “because the isolation can kill them quicker than the illness”.

Marta is one of 1.8 million Mozambicans who are living with HIV — the epidemic that has swept through Africa, ravaging villages and towns, orphaning millions of children and crippling already vastly under-resourced healthcare systems.

But HIV is not the death sentence that it once was. With regular antiretroviral medication, a nutritious diet and proper care, many people with HIV are able to become healthy again, return to work and live long and positive lives.

This is why home-based care, like that provided by our local partners Arepacho and Tinhena, is so vital — it provides practical, lifesaving healthcare and support at the grassroots level, while also raising vital awareness about HIV and AIDS to breakdown ignorance and stigma. And it is this work, combined with the prevention and education activities that we also support that will help address the HIV and AIDS crisis in the long-term.

The main thing I have learnt is that HIV or AIDS does not condemn you to death — it can be controlled through medication and diet...

Typically, carers help people access vital antiretroviral medication; provide basic healthcare and wound management; dispense medicines; deliver food to ensure clients get the nutrients they need; provide important social contact, companionship and psychological and spiritual support; accompany patients to doctor’s check-ups, hospital appointments and HIV testing centres; and help with household chores, such as cooking, cleaning, fetching water and caring for the children.

As Amelia Jame Cubassa, of Chongoene Sede, says emphatically, home-based care “gave me back my life … and motivated me to fight for my life and my children’s life”.

Sitting on a straw mat underneath the shade of a tree, Amelia’s peaceful, laughing face belies memories of intense pain, when she was weak, bed-ridden and felt too sick to move.

“It was very difficult, as I was dependent on the hospital and that is far away. It was very sad to see my eldest daughter of 15 not knowing what to do when I was in a lot of pain,” Amelia says.

“When my test came back positive, Arepacho helped me to get antiretroviral treatment, and now that I’m having treatment, I feel that my health is already starting to get better.”

Arepacho caregiver Hortencia Anonio Ndima, visited Amelia every day when she was sick — bathing her, cooking for her, bringing her food, making sure she took her antiretroviral medication and kept her doctors’ appointments. But now that Amelia’s health is improving, she visits three times a week.

“[Without home-based care] I would lose hope for life,” Amelia says tearfully. “The improvement of my health is because of the support I’ve received from Arepacho.

“The main thing I have learnt is that HIV or AIDS does not condemn you to death — it can be controlled through medication and diet and I feel that I should pass this learning onto others who are in my situation and think that living with HIV is just counting down the days to die.”

Home-based care not only provides essential support for people living with HIV, but for their families as well; especially children such as Hortencia Mandlate, 15, from Nhocoene, who watched helplessly as her mother Olinda’s health deteriorated.


Since Cidalia Tsenane, of Maputo, Mozambique (right) started receiving home-based care from Tinhena caregiver Angelina Pelembe, her health has improved. ”The visits and care ... helped me to recuperate my health. Today I am a strong person.“ Photo: Joel Chiziane/OxfamAUS.

“I am the person who looked after my mother, always taking her to hospital, but never seeing any improvement… when she would get worse, I could only look at her and pray to God to not to let my mother die. And when she would get really bad, I would just cry because I didn’t know what to do,” Hortencia says.

“[With home-based care] my mother has improved physically and emotionally. For example she has started to make plans for the future … I see that my mother thinks about positive things now and this is good as it also brings me happiness.”

Educating families and communities is a vital part of the caregiver’s work and is crucial to address the stigma, discrimination and ignorance that surrounds HIV and AIDS.

“As a caregiver I really like encouraging those who are sick to take the HIV test, giving family talks so that everyone understands and gains knowledge about HIV,” Amelia’s caregiver Hortencia explains.

“I am motivated to know that people depend on me, in part, to survive, and to overcome the prejudice against HIV. It’s important for me to know that a simple gesture can save a life; this motivates me because this is what I’d want others to do for me.”

It is undoubtedly the multiple roles that caregivers take on — that of nurse, counsellor, friend, mother, confidante, priest and motivator — that is their greatest value.

“She is a person that I can count on at any moment of my life,” Lina Daniel Moore, who lives on the outskirts of Maputo, says of her caregiver Angelina from our local partner Tinhena. “When I was very sick she did everything for me.

“Without the visits from Angelina I think that I would still be very sick or even would have already died — not just for lack of medications, but for lack of someone that understands me, for lack of company.

“Now I know that HIV does not kill, but ignorance does.”

It is this strength of mind and spirit, this sense of hope for the future and a determination to live healthier fuller lives, that is the common thread which runs through all home-based care clients — even Marta, back in Fidel Castro, who lies sick in her bed.

“Now I live positively and I know that I can save myself if I follow treatment and eat well,” Marta says. “I will get better. I’ll get better because I want to live more and teach others about this illness of HIV.”