An oasis for caregivers and patients with mental illness
Families living with mental health conditions find advice and solace from a community nurtured by KPSI, an NGO in Indonesia.
No time to read? Here’s a quick summary
Caregivers of people with mental illness often deal with stigma in society and discrimination, finding themselves alone with little support from the community. KPSI in Indonesia was set up by Bagus Utomo in 2007 to provide guidance to families living with schizophrenia. To date it has supported hundreds of families through counselling, skills training, information on mental health, as well as advice on government assistance and treatments available. KPSI continues to uplift caregivers like Titien, who has found a community she shares her life with and gains strength and courage to continue to take care of her son, Patrick.
She remembers hiding in her neighbour’s house, afraid to return home after her teenage son started shouting and throwing a fit. This was not the first time 58-year-old Indonesian Titien Herlina found herself in a precarious situation with her son Patrick Matthew Godlee, who was given to angry outbursts. But it did not make dealing with it any easier.
A single mother, Titien has been Patrick’s primary caregiver since he was diagnosed with schizophrenia in 2014. But he had developed symptoms more than a year earlier when he was 13 years old.
Recalls Titien, “He showed signs like doing homework very slowly and talking to himself. Eventually he started having conversations with someone invisible. He would hear sounds when there were none.” She adds, “I was confused, what happened to this child? I thought he was possessed or something. I didn’t understand what was the problem.”
Patrick would also say unimaginably rude and hurtful things and sometimes hit her.
“I screamed and begged him to stop. I reminded him that I’m his mother,” she explains. “But when he has these episodes, it’s like he forgets. After some time, he would calm down and apologise. That’s how it always plays out.”
The idea that Patrick was possessed is not an unusual one in Indonesia, where people living with mental illness Jakarta Post has reported that a 2018 survey by the Indonesian Psychiatric Association showed that around 9 million Indonesians suffer from mental illnesses, with 400,000 having schizophrenia.
Read the news article often deal with stigma, superstition and discrimination. Thousands are subjected to abuse, neglect and ‘pasung’, where individuals with noticeable psychosocial problems are shackled or locked up in confined spaces According to Human Rights Watch, in 2018, the number of Indonesians diagnosed with mental illness and living in pasung dropped to 12,800 from 18,800 in 2016. This was due to efforts by the Indonesian government to end the practice.
Read the report , keeping them isolated from society. This is despite the fact that the Indonesian government had banned the practice in 1977.
According to Bagus Utomo, himself a caregiver to a family member with a mental illness, fear, pseudo-science and ignorance are factors that have stopped many living with mental illness from getting the medical treatment they need to recover.
“Because of this ignorance, if a family member suffers from schizophrenia, they will be...shown to a witch doctor, shaman, or religious figure,” explains Bagus. “I read somewhere that in Indonesia the patients are brought for medical help three years late. The family will waste their resources — money, energy, attention, and time, until they are desperate and choose to shackle or abandon the patient.”
Having experienced how hard it was to get accurate information and medical advice about mental illness, Bagus saw the need to start a movement to create awareness and provide support to other families like his.
He says, “My second oldest brother had a schizophrenic episode when he was 29 going on 30. This was in 1995, information about mental illness and schizophrenia was very scarce. It was like dealing with an invisible enemy. We sought alternative healing for around 10 years with no results.
“One day my brother had a major episode and I thought I cannot do this anymore. We decided to collect money to take my brother to a rehab centre in South Jakarta. Over there I saw that a complete recovery is possible....I realised that it’s so important for Indonesians to receive education about mental health.”
In 2007, he started an online movement called KPSI (Komunitas Peduli Skizofrenia Indonesia), or Indonesia Community Care for Schizophrenia KPSI has opened branches in over 10 cities and rural areas across Indonesia, educating and supporting families living with schizophrenia. It has built a safe and tight-knit community, where members of all ages, religions and socio-economic backgrounds can reach out for support and encouragement.
Visit KPSI’s Facebook page, to tackle the burden of stigma and create awareness around mental health.
KPSI provides patients, caregivers and survivors with the tools they need to get better KPSI provides mental health facts and corrects misconceptions and disinformation, tips on tackling challenges in everyday life, such as stigma and discrimination, professional advice on types of treatment available and guidance in applying for government assistance, like national health coverage. Its role is especially important in Indonesia’s rural and remote areas, where access to mental healthcare is scarce and difficult.
Read about the future of mental healthcare in Indonesia
While offline, Bagus and his team of volunteers organise events that bring people together to share their experiences, support one another, and connect them to doctors (psychiatrists and psychologists) who offer advice and direction. It also conducts art therapy sessions to teach new skills to its members.
Emotional relief for caregivers
Through its activities, KPSI has brought emotional relief and respite to hundreds of caregivers, like Titien, who found herself alone and estranged from her family.
“There’s usually pressure from family. In the beginning they blamed me, I raised him wrong or something,” she says. “I felt guilty, was it really because of me. But I asked the doctor and he said that’s not a factor.”
People who provide care to those with mental health issues are often isolated and invisible, with their needs often going unnoticed, leading to caregiver burnout Symptoms of caregiver burnout include, anxiety, depression, feeling exhausted, overwhelmed and helpless. This applies to people who give care to patients with a variety of medical conditions, including mental illness.
Find out more here . This is compounded by the fact that mental illness is considered taboo in many cultures, leading to an inability to talk openly about it.
When Patrick was diagnosed with schizophrenia, Titien says that she felt helpless. She was also very concerned about her son’s future, as they were both alone in the world.
“As a caregiver, I would think what will happen to my child if I’m not there. He has no siblings. I had all this burden in my mind and I felt despair...Why does fate have this in store for me? I only have one child and he has this illness,” she says.
She turned to KPSI, having stumbled across them when searching for resources on schizophrenia online. Through them she found the strength and courage to deal with her challenges.
“After meeting KPSI I felt very happy and relieved. It turns out many people are going through the same experiences as me, being a caregiver. Some have it worse, where the patient is refusing medicines. My son takes his medicine. I no longer felt like I was the most unfortunate person. I no longer felt alone.”
She also benefited from advice that Bagus gave about how to deal with Patrick’s behaviour, and recommended that she bring him to KPSI so he could meet others with the same illness.
“Titien adapted to Patrick's condition and...felt more confident when dealing with him. Patrick became more relaxed. He accepted his weaknesses and strengths. When we asked him to join our activities, he was happy. He became more open and receptive,” says Bagus.
“We see that when treatment and counseling goes well, eventually the situation can be managed well and there is significant progress towards recovery.”
Having been bullied in school and called ‘crazy’ by other students, Patrick has finally been accepted by his new-found friends at KPSI.
Says Patrick, “I feel like the people there had the same problems and illness. There’s not much difference between what they are going through and what I’m going through. I’ve received advice on how to grow and progress. I can develop myself here. They are very supportive of people with special needs.”
His relationship with his mum has also deepened.
“She is everything to me. Someone I can talk to about anything,” confides Patrick. “I love my mom so much. Without my mum, I would not be where I am today. She’s like an angel for me.”
Titien agrees that KPSI has changed their lives, saying that she has become more patient through the process of learning to be a better caregiver from other families dealing with mental illness.
“Patrick tells me that I’m nicer. I don’t get angry anymore and I’m more patient. We’re closer now,” she says.
In turn, Titien is giving back to society, by sharing her story with other caregivers through a community group set up at church.
“Because I opened up, they opened up as well. Other families are telling me about their own struggles. I’m grateful that it has helped other families deal with situations similar to ours,” says Titien.
Step into the shoes of a caregiver
Explore our first multi-plot interactive video, A Quiet Ripple, that shows what a mental health caregiver might experience - from dilemmas, to a need for support. The choices you make will impact how the story ends. Experience it to better understand the lives of caregivers.
👋🏻 Are you a caregiver or know someone who is one?
What challenges do you or someone you know face as a caregiver to a person with mental illness? What advice or tips can you share?