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SINGAPORE - Ms Margaret Ong remembers the last time her husband said he loved her. It was 2018, nine years after Mr Leslie Ng was diagnosed with schizophrenia.
Since then, the 60-year-old's condition has made him ignore Ms Ong's existence. His paranoia and anxiety also make it difficult for them to converse or have meals together.
Yet, for most of their three decades of marriage, Mr Ng was "a true romantic", says Ms Ong, who turns 59 this year.
"In his good years, when he could express his feelings better, he would frequently say: 'I love you,'" she tells The Straits Times. "Even when I was brushing my teeth, he would come up behind me, hug me warmly and whisper into my ears, 'I love you.' These are the memories I cherish dearly."
Schizophrenia is a psychotic disorder, a mental illness caused by changes in neurotransmitters in the brain. It affects how a person perceives the world, behaves and feels. People with schizophrenia may develop hallucinations or delusions of being persecuted. They may lose interest or pleasure in life and become less expressive.
About one in 100 people globally develops schizophrenia, experts say. A study by the Institute of Mental Health (IMH) published last year in the journal Frontiers In Psychiatry found that 2.3 per cent of adults living in the community - not medical institutions - had a diagnosis of schizophrenia or other psychotic disorders.
Early detection and treatment can help patients lead a normal life, but the average Singaporean is less likely to be able to recognise schizophrenia than other illnesses that affect the brain. An IMH study released in 2015 found that schizophrenia was the least recognised of five illnesses in a list including dementia, alcohol abuse, major depressive disorder and obsessive compulsive disorder.
This gap in mental health literacy means that the symptoms displayed by a person with schizophrenia may be dismissed as personality traits rather than treatable conditions. People with schizophrenia are vulnerable to job loss. Their relationships may break under the stress.
Ms Ong was determined that her husband's diagnosis would not end their marriage. She also learnt to find her identity beyond being a wife and caregiver. However, as she details in her book One Husband Two Men, published late last year by Word Image, it has not been an easy journey.
The last time Ms Margaret Ong heard her husband say he loved her was 2018. ST PHOTO: GAVIN FOO
When Ms Ong and Mr Ng had their customary wedding in 1992, two years after registering their marriage, it stunned their friends who had witnessed a five-year courtship marked by squabbles. "They thought we wouldn't last," she says.
They met at a business lunch when they were in their mid-20s. Ms Ong was a forex broker and Mr Ng a forex trader in a bank. He asked her out.
"He liked me for my independent nature and unassuming personality. I liked his quick-wittedness, boldness and hidden gentle and caring nature," recalls Ms Ong, who is now managing partner with a venture capital firm.
They were both strong-willed and independent, characteristics that drew them to each other and also fuelled their arguments. While arguing over tennis once, Ms Ong threw down her racket and walked off the court. Another time, Mr Ng was upset that her work kept her late.
The couple registered their marriage in 1990 and had a customary wedding ceremony in 1992. ST PHOTO: GAVIN FOO
Yet, he ran the household while she travelled for work. They agreed on the big issues: the importance of education, saving money and how to raise their two sons.
Mr Ng knew where to buy the best and best-priced groceries. He planned family outings and insisted they holiday as a couple at least once a year. He booked the vacations, usually at beach resorts.
They ended each year with a New Year's Eve date, where they had a frank discussion over wine about how the year had gone for them and how they could make things better in the year to come.
Mr Leslie Ng and their sons in Tasmania, pictured in 2005. ST PHOTO: GAVIN FOO
Their last such date was to welcome 2008. "I can still vividly remember, we were talking about our silver wedding anniversary. We were wondering if we wanted to renew our vows and go through the ceremony again with our children and family," Ms Ong says.
Things changed soon after.
In August 2008, Mr Ng began asking their elder son, then 12, to stand watch outside the front door of their Bukit Batok flat. Mr Ng suspected the neighbour was sabotaging the public utilities meters.
Wanting their son to focus on studying for the PSLE instead, Ms Ong suggested installing a camera at the door. Soon, Mr Ng had rented high-tech cameras for every spot vulnerable to an outsider's gaze, such as the balcony, living room and windows.
Eventually, his concern grew so strong that the family had to sell their flat and move to a new one in Clementi. Even there, he was convinced he was being stalked and monitored, and decided to hire a private investigator.
Schizophrenia affects thinking, perception and emotion, says Dr Sutapa Basu, senior consultant at IMH's early psychosis intervention programme, department of psychosis.
"Persons with schizophrenia have difficulty distinguishing what is real from what is not and may be unable to think logically, which may lead to them having trouble relating to other people," she adds.
"When the family members and loved ones are unaware of what the person is going through and the reason behind the change, they are unable to understand this change in his or her behaviour. This may lead to a break in communication and misunderstandings, anger, fear and ostracising the person with the illness."
Ms Margaret Ong in her home in Queenstown, on March 10, 2022. ST PHOTO: GAVIN FOO
In 2008, Ms Ong was too annoyed and angry to realise there might be medical reasons for her husband's behaviour. It was the private investigator they hired who, after finding no evidence to back up Mr Ng's fear of stalkers, suggested to Ms Ong that they consult a psychiatrist.
Mr Ng was resistant to the idea, though he finally agreed and was diagnosed with schizophrenia in 2009.
He often resisted treatment in the years to come, leading to screaming matches with his wife and upsetting their sons, then pre-teens. Both are now in their 20s and declined to be featured in this article.
Mr Leslie Ng and Ms Margaret Ong on a trip to Hawaii in 2011. ST PHOTO: GAVIN FOO
Dr Ang Yong Guan, a consultant psychiatrist, has treated Mr Ng since 2011. He urged Ms Ong to share her experiences in a book to help other caregivers in similar situations.
Dr Ang tells ST: "Taking care of the mentally ill is very challenging and is different from that of the physically ill. For the physically ill, the symptoms and signs are, most of the time, objective, quantifiable and measurable. But not so for the mentally ill."
It is even more challenging when the patient is in denial of his or her illness, he adds.
Early treatment is important. Dr Basu of IMH says that if schizophrenia is "left untreated, brain cells may be permanently damaged and the structure of the brain altered".
Early and adequate treatment can greatly improve a patient's condition.
Dr Basu treated a young woman who lost her job after developing auditory hallucinations, delusions of being persecuted and disordered thinking. Her treatment involved taking anti-psychotic medication as well as being in the care of a diverse team, where professionals educated her about her condition and how to manage it. She has recovered and is now asymptomatic, employed and planning to get married this year.
Says Dr Basu: "Regular and optimum treatment is the key to keeping the symptoms at bay and improving functioning."
However, she adds, some 34 per cent of patients with schizophrenia continue to experience symptoms despite treatment.
The couple pictured on another holiday trip to Japan in 2016. PHOTO: MARGARET ONG
Mr Ng was often in denial and refused to take his medication. When Ms Ong travelled for work, their young sons had to step in as caregivers. Mr Ng's wariness of strangers also made it difficult for the boys to have friends over.
Another difficult adjustment was taking over Mr Ng's managing of the household. In the past, Ms Ong tells ST, "I didn't have to lift a finger. He could tell me where things were fresher and cheaper. After 2008, I had to learn how to organise the household and financial matters".
The stress of caregiving often made it difficult for mother and sons to communicate clearly and support one another. But the support of family, friends and medical professionals helped.
Dr Ang explained schizophrenia to the boys and suggested how they could help their mother. Family and friends provided safe spaces where mother and sons could vent, and also safe spaces to enjoy social occasions with Mr Ng.
The couple pictured on holiday in Kashmir in 2011. ST PHOTO: GAVIN FOO
The past 13 years have been bitter but also sweet for Ms Ong. She smiles and recalls a time when Mr Ng wore a Bluetooth headset so that his conversations - with people others could not see - would not be met with odd looks.
They continued to travel as a couple and family. They went horseback riding in northern India in 2011, camped in durian plantations in Malaysia in 2014, and embraced for photos in Japan in 2016.
However, in 2017, his condition began to decline. By 2018, he began to ignore her existence.
In 2020, Mr Ng entered IMH as a long-stay patient. Covid-19 restrictions on visits have made it difficult for the family to visit as often as they would like to. The last time Ms Ong saw her husband was in January this year.
She is at peace with the transition, while also hoping that Mr Ng will get better and return home one day.
"Presently, I have shifted my focus and priorities to supporting my children and growing in my Christian faith," she says. She also finds purpose and meaning in raising awareness of mental illness and advocating for the caregivers community.
Until next month, 40 per cent of proceeds from the sale of her book go to Caregivers Alliance, a non-profit organisation supporting caregivers through training and other services.
In her book, Ms Margaret Ong shares her experience of being both wife and caregiver to a husband with schizophrenia. PHOTO: WORD IMAGE
She and her sons have talked about their lives at online forums and video conferences. She hopes it will reduce the stigma around schizophrenia and make it easier for others to find support.
Flipping through old photo albums of her and Mr Ng on beach holidays, she recalls the many ways in which he made her feel loved and cherished.
"I am very thankful and grateful that God has allowed me to experience the many joyful moments. With this reservoir of memories, I can live life without bitterness and assure myself that I have truly enjoyed my life with Leslie."
She adds: "My life was never as all rounded as my husband's. He introduced me to diving, fishing and music.
"When I go on a picnic, I would just bring myself. My husband would take care of the rest, such as the mat, food, drinks and fruit. His personality has always been this way."
One Husband Two Men by Margaret Ong is available from this website.
Schizophrenia is a mental illness that affects thinking, emotion and behaviour, says Dr Hatta Santoso Ong, consultant at Changi General Hospital's (CGH) department of psychological medicine.
It is caused by the overactivity of a neurotransmitter called dopamine. This results in altered brain function, which can manifest as disordered thinking, delusions and loss of drive or interest in life.
Dr Ong adds that people mistakenly fear those with schizophrenia. Patients are vulnerable and require the care of medical professionals and society.
Globally, one in 100 people develop schizophrenia, says Dr Sutapa Basu, senior consultant at the Institute of Mental Health's early psychosis intervention programme, department of psychosis.
An IMH study published last year found that 2.3 per cent of adults in the community here had a diagnosis of schizophrenia or other psychotic disorders.
Dr Basu says the illness affects men and women equally and usually manifests in the young. Peak incidence is around age 21, though women tend to develop it later than men, between the ages of 25 and 35.
People can seek help at any government restructured hospital or via general practitioners and polyclinics, who will provide referrals to specialists.
IMH specialises in the early detection and management of psychotic disorders. Dr Basu says a treatment team may include a psychiatrist, pharmacist, nurses and case manager, as well as an occupational therapist to improve the patient's function, and a peer support specialist, usually someone who has recovered from a similar condition.
At CGH, Dr Ong says treatment includes medication, psychological therapy, functional rehabilitation and social interventions. Psychiatrists work with community partners, including family services centres, to support patients and their families with home visits or vocational training.
Ms Sarah Lee, a medical social worker at CGH, helps patients and their families overcome practical problems such as financial strain, holding down a job or managing care needs.
She says: "Having strong social support is important in promoting good mental health for people with schizophrenia and their families." Neighbours and friends can help by lending an ear or even doing household errands.