Caregiver stress and burnout: Looking after an adult son with schizophrenia

 For over 20 years now, 42-year-old Kevin Otieno has been confined to his mother’s three-bedroom house in Nubian Estate, Kisumu. In all these years, he has mastered his mother’s footsteps and sound, which have become his source of comfort.

As his mother, Margaret Akinyi, does the housework, Kevin mostly sits on the couch, remote in hand, glued to the television. Were it not for schizophrenia, Margaret's joyful son would be a banker. She discloses that her son scored 400 marks in primary school and later joined Kisumu Boys High School.

Margaret often thinks about what his son’s life would be like — him probably married and the grandchildren making their grandmother happy.

But the reality is grim. At the couch, Kevin only murmurs a word or two once in a while while moving rhythmically to music.

Margaret had to leave her business to take care of her ailing son.

Trouble started in 2001 when Kevin was in Form Two. He would complain of severe headaches, which would go on for days despite being on medication. Every time he complained of the headache, his mother would take him to the nearest health facility, where doctors would administer painkillers.

“When school opened for term two, my son, who was then in Form Four, refused to go back to school, saying he had cleared Form Four,” says Margaret, adding that his sentiments left the family worried.

When he was forced to go back to school, he became agitated, insulting those around him while threatening to assault them. Unfortunately, Kevin’s father died a couple of days after his son started portraying his strange behaviour. Soon after the burial, Kevin’s mental health deteriorated even further, pushing his mother to seek medical attention.

“I managed to convince my son, who was then 18 years old, to accompany me to the health centre for a medical check-up,” she says.

After assessment, doctors informed Margaret that her son was suffering from schizophrenia. This is a mental health disorder that affects one’s ability to think, feel and behave normally.

According to the World Health Organization (WHO), the mental disorder is characterised by significant impairment of perception and changes in behaviour. Schizophrenia affects one in every 300 people worldwide, with those affected showing symptoms such as persistent delusions, hallucinations, extreme agitation and disorganised thinking.

“The doctor also informed me that my son's condition was permanent and could only be managed using daily drugs,” says Margaret.

She was heartbroken. The pain of her son giving up on his dreams and being dependent on those around him for care and support weighed heavily on her.
Kevin started being violent, chasing his siblings out of the house whenever he had a relapse. “Sometimes I had to control myself whenever he got agitated due to the fear that he could also attack me,” says Margaret.

Getting Kevin’s daily medication was tough. He was placed on a drug prescription to be taken twice in a day, with a single dose costing up to Sh3, 000.

In the beginning, purchasing the drugs was easier since Margaret had saved part of the contributions that had been channelled towards her husband’s burial. With time however, she was running out of cash and could no longer sustain her shoe selling business to provide for her other three children.

“Sometimes I would lack money to buy the drugs and my son would relapse,” she says.

Despite his condition, however, Kevin was able to go back to school until he finally sat his Kenya Certificate of Secondary Education in 2004, scoring a D+.

Unable to continue with his education, he stayed at home as his mother automatically became his caregiver. Margaret tells Healthy Nation that the caregiving role is overwhelming and requires the strongest of hearts. This, she says, is because over the years, the mental condition rendered her son unable to carry out the chores he could easily engage in before the diagnosis.

Clean boy

Growing up, Kevin was a sharp and clean boy. He would also help his mother by handling some household chores.

But now his mother has to cook for him, wash his soiled clothes, and administer his daily drugs while keeping a close eye on him just in case he leaves the house unnoticed and is reported missing. A couple of years ago, he went missing for close to a month and in the process, his mother got conned more than two times while looking for him.

“He has to be forced to do almost everything and still gets wild sometimes. Sometimes I have to invite the police to intervene,” says Margaret.

Meanwhile, due to financial constraints, Margaret often relies on financial help from church members and friends to buy drugs.

“The government gives us Sh2, 000 as caregivers to take care of loved ones suffering from mental conditions, but this amount can barely buy a single dose of the daily medication,” she says. Although the mother of four says she has accepted her son's condition, sometimes the pressure gets too much. She cannot afford counselling sessions and her fall back plan is going to church.

“I have been cleaning the church for the longest time. Whenever I am stressed, I always find time to whisper a prayer and pour out my heart to my creator,” she says.

Because of what she does, she has been receiving invitations to speak in a mental health caregiver’s forum while sharing the journey of taking care of her son. The platform offers her relief while making her feel that she is not alone in the journey.

“I believe that my son will regain his mental stability one day, but until then, I can only hope that I will be alive to take care of him because no one can handle him in the best way like I do,” she says.

Arthur Gichuru, head of Clinical and Corporate Wellness at Sereni Minds Wellness, defines schizophrenia as a chronic and severe mental health disorder that affects how a person thinks, feels and behaves. He says that individuals with schizophrenia may seem like they have lost touch with reality, which can be distressing for them and their loved ones.

The exact cause of schizophrenia is unknown, but it is believed to result from a combination of genetic, brain chemistry and environmental factors. They include family history, abnormalities in brain structure, exposure to viruses, malnutrition before birth, or psychosocial factors and substance use particularly during adolescence and early adulthood.

“Symptoms of schizophrenia are generally categorised into positive, negative and cognitive. Positive symptoms include hearing or seeing things that are not present, strongly held false beliefs that are not grounded in reality, unusual or dysfunctional ways of thinking and agitated body movements or lack of movement,” he explains.

“Negative symptoms include reduced expression of emotions via facial expressions or voice tone, decrease in the ability to initiate and sustain activities, lack of interest or pleasure in everyday activities and reduced speaking," he adds.

Such patients, says Arthur, may experience difficulty in understanding information and using it to make decisions. They may have trouble focusing or paying attention and difficulty in using information immediately after learning it.

Contrary to the common myth that schizophrenia means having a split or multiple personalities, Arthur says the disease means that there is a split from reality. He explains that while many believe that people with schizophrenia are inherently violent, most individuals with the condition are not violent and are more often victims of violence than perpetrators.

“Some think that people with schizophrenia can never lead a normal life. While challenging, many with proper treatment and support can lead fulfilling lives. Schizophrenia does not imply low intelligence. While cognitive impairments may exist, they do not equate to a lack of intelligence,” he explains

He details that caregivers of patients with schizophrenia are bound to be emotionally drained due to dealing with the unpredictable nature of symptoms. They are also likely to experience financial strain as the cost of treatment and potential loss of income can be significant. Social stigma can also lead to isolation and lack of support.

The physical demands of caregiving can affect the caregiver's physical health, coupled with frustrations from finding and coordinating appropriate care. “Caregivers can receive support by understanding schizophrenia and learning caregiving skills to help manage challenges more effectively, joining support groups for emotional support and getting respite care to allow for rest and recharge,” says Arthur.

“Therapy for caregivers can address stress, depression and anxiety, seeking financial aid or subsidies can help manage the costs of care, and utilising community resources such as mental health organisations can provide additional support and services.” He adds.

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