Living with schizophrenia: a caregiver’s perspective

Living with schizophrenia is extremely challenging for the individual who has it, as well as their family. Kevin*, a 65-year-old retiree, has an adult daughter with schizophrenia whom he cares for at home. This is their story:

My daughter (now aged 36) was diagnosed with schizophrenia when she was 19 years old. The first signs were incoherent speech, muddled thinking, and catatonic behaviour, which led to her being hospitalised. The diagnosis took three months, and her doctors said the cause was genetic. It was difficult to accept in the beginning and I was devastated.

I had hopes and dreams for her life, but schizophrenia shattered them. I had to create a new, compassionate vision for her. Over time, I’ve come to accept her fully, value her contribution to my life and our family, and am better able to manage her, with her mother’s help.

Schizophrenia treatment

When my daughter was hospitalised, she was put on the correct medication, including mood stabilisers and antipsychotics. She sees a psychiatrist every two months and attends support groups, which she finds beneficial because she can socialise with other people who have the same condition.

During the early years of her mental illness, she struggled with personal hygiene, tended to overeat, and was not productive. However, things have become easier for her over time. Seventeen years later, she takes care of herself, is more aware of overeating because of the medication, cleans up after herself, and does her own washing.

Because of her illness, she is unable to obtain employment. To occupy her time, she volunteers at a charity project that organises the recycling of paper. She finds volunteer work stimulating and enjoys socialising.

I make sure she takes her medication every day, remind her about daily self-care, and help her manage her emotions. I try to always speak to her in a kind way and encourage her whenever the opportunity presents itself. Although she receives a grant, I subsidise her with necessities, such as clothing, transport, and whatever else she may need.

Learning through caring

Even though circumstances can become painful and stressful, I’ve learnt to be patient, but firm when necessary. Establishing firm boundaries, rewarding good behaviour and discouraging dysfunctional behaviour are all very important. I’ve also realised that my daughter functions best when she maintains a routine, does moderate exercise, such as walking, and observes regular bedtimes. This helps her stay motivated and boosts her self-esteem.

It’s sad to think of, but I know that sound financial planning and having my will in order are vital for the time when I’m no longer around to care for my daughter. But meanwhile, on the brighter side, I’ve learnt the value of good communication, as well as the importance of looking after myself too. I’ve disciplined myself to take time out and watch my health, which helps me to go out and enjoy my life.

*Not his real name.

Mediclinic is prioritising mental wellbeing by making mental health services more accessible to the broader community. We have dedicated mental health units in Welkom, George, Newcastle, Pretoria, Legae, and Cape Town. Smaller in-hospital care options also exist within some of the acute facilities.