‘When do I live?’ What caring for a relative with schizophrenia costs families

When someone lives with a severe mental illness, their care often falls onto their family members. The cost, says researcher Bongwekazi Rapiya, is not measured only in lost rand. It is measured in lost time

“When do I live?”

A 32-year-old man in the Eastern Cape asked us this question while crying as he described taking care of his younger brother, who has schizophrenia.

The man was talking about the sacrifices he makes for his brother and the other relatives he supports. Winter was coming, he said, and he needed to buy things for them. Sometimes, he has to buy necessities like food and clothing on credit.

“I sacrifice stuff for my siblings,” he told us.

I have thought about that question many times since we talked to him and other family members who care for those living with severe mental conditions such as schizophrenia, a chronic and highly stigmatised mental health condition that changes how people perceive reality.

The hallmark of the condition is that it causes episodes of psychosis: delusions, meaning those with the diagnosis believe things are true even when shown evidence to the contrary, and hallucinations, where they see or hear things that aren’t there.

When do I live?

It’s a question that takes us beyond the diagnosis of the person with severe mental health conditions and towards the lives of the people who care for them.

Less is known about the ways it affects those responsible for them.

Our study, which was published in BMC Psychiatry, involved 22 interviews with primary caregivers of people who experience psychosis in low-income communities in Nelson Mandela Bay in the Eastern Cape. We asked them about their experiences of caregiving, how they coped and whether they would want to participate in peer-led support groups, where others caring for people with severe mental conditions were the ones guiding the discussion.

What they told us was about much more than mental illness.

This matters because caring for someone with a severe mental health condition often involves much more than taking them to a clinic. The caregivers we spoke to described cooking, cleaning, helping with personal hygiene and reminding their relatives to take medication.

They also learnt to recognise the early signs that their family members were becoming unwell.

When a relative's condition worsened, for example, when they didn’t take their medication and they wanted to hurt themselves or others, some caregivers described needing an ambulance or the police to help get the person to hospital.

Caregivers also had their own ideas about what “recovery” for their loved one should look like.

For many, it meant that their relatives would be able to better manage their own condition and become more stable and independent, find employment and contribute to the household.

But recovery was not simply about wanting their family members to work.

For some, greater independence meant their loved one would be able to have their own relationships, social life and purpose — something that also meant the caregivers could regain some of the time and freedom they had lost.

“I would be relaxed, no depression and no stress and be normal, there is nothing else. I want him to work, because I also want him to have a wife and children and all of that, the normal life I know.”

Some were unemployed and depended on social grants or pensions. Others were responsible for food, transport, medical supplies and supporting other members of their households.

Some older caregivers were supporting unemployed adult children while also caring for a relative with a severe mental health condition.

“No one will want to come help you, it becomes your own burden … as a caregiver … they don’t help, even those people from church, those maybe who can come visit and give support and show love.”

This is where the burden of caregiving becomes difficult to separate from the circumstances in which people live. A caregiver who has limited income is not only managing the practical demands of mental illness, they are also trying to make a household function.

And the burden is not measured only in rand.

It is measured in time. It is measured in the family gatherings missed, the social activities abandoned and the personal plans put on hold.

Some caregivers told us that they avoided family gatherings, traditional ceremonies and community events because of the stigma associated with their relative's mental health condition.

“I also don’t feel comfortable even going to pay respects or condolences to grieving neighbours anymore because people will be pointing … that you come from that mad people house. It makes me uncomfortable because they also believe that I am mentally ill, too.”

One of the things that struck me about these interviews was how often the caregiver's own life seemed to shrink around their caring responsibilities. There was less time to socialise. Less time to rest. Less time to do something simply because it brought them pleasure. And sometimes less contact with the people who might have offered support.

“It feels like you are doing this alone. Until something goes very wrong, then the system notices.”

The caregivers interviewed had found different ways of managing the pressures they faced. Some sought support from other people. Others exercised. For some, faith was important. But other caregivers described coping strategies that could potentially cause harm.

“When you stress, you think about everything like your veins are throbbing in a sore way, so I would feel like taking painkillers and sleeping.”

They wanted to meet other people who understood what caregiving was like. They wanted somewhere to talk about their experiences, share advice and feel less alone. They also wanted practical information about treatment, financial assistance and other resources that could help them navigate the responsibilities of caring for someone with a severe mental health condition.

One participant described the kind of group she imagined: “Sit in one place, have a group where we give each other advice.”

She suggested that caregivers could come together, bring the people they cared for, cook, have fun and get support. That description is important because it tells us that support does not always have to look like another clinical appointment. Sometimes people need a place where others understand.

But there was also a practical warning in the interviews. Some caregivers said they would not be able to participate in support groups because of work or other responsibilities.

When we design support around caregivers' needs, we have to think about when and where that support is offered; otherwise, the people who need it most may be unable to attend.

We should also recognise that caregivers themselves have knowledge.

They know what happens when their relative becomes unwell. They know the early warning signs. They know what helps and what makes things worse. They know where the gaps in services are because they encounter those gaps while trying to get care for someone they love.

That knowledge should be part of how community mental health services are designed.

A woman telling us that she had little time for herself.

A caregiver avoiding family gatherings because of stigma.

Someone using alcohol or medication to cope with stress.

And a 32-year-old man, crying as he asked a question that I believe should sit at the centre of conversations about community mental healthcare: “When do I live?”

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Bongwekazi Rapiya is a researcher in the Mental Health, Alcohol, Substance Use and Tobacco Research Unit at the South African Medical Research Council and the lead author of the study. The caregivers’ research is part of a larger study, Peer-led Recovery Groups for People with Psychosis in South Africa, known as Prize, and led by the South African Medical Research Council and the University of Nottingham.