Mental illness: Caregivers are forgotten collateral damage

Schizophrenia remains an enigma and the resolve of caregivers is to be admired.
By Chong Siow Ann, Published The Straits Times, 29 Nov 2014

WHEN Ms Danielle Lim's maternal uncle, Seng, was taken by the police to a mental hospital, he was attended to by a psychiatrist with a shaky command of Hokkien. The psychiatrist tried to convey to Ms Lim's grandmother that her son had schizophrenia. The elderly woman, who spoke only Hokkien, was baffled. "He has sch..," the psychiatrist started again before abandoning it completely.

He then went on to suggest electro-convulsive therapy, but this terrorised Seng's mother into checking him out of the hospital without any treatment. A string of spiritual healers was consulted in an increasingly desperate search for a cure, which depleted the family's savings.

Ms Lim recounted this first encounter with a psychiatrist in her book, The Sound Of Sch, published by Ethos Books, launched last month to coincide with World Mental Health Day on Oct 10.

She describes her uncle's descent into psychosis and the travails of her mother, Chu, who became the main caregiver. The unwelcome epiphany dawned on Chu "with a mighty shudder that schizophrenia, with whatever in the world it encompassed, and the world, with whatever contempt for schizophrenia it encompassed, (had) fallen on her shoulders... because if she doesn't take care of him, no one will".

The objective of commemorating World Mental Health Day - as the World Health Organisation (WHO) states on its website - is to raise awareness of mental health issues around the world and to mobilise efforts in support of mental health. This year's theme was "Living with schizophrenia".

Schizophrenia strikes one in about 100 people. WHO has estimated that 26 million people worldwide are living with schizophrenia, but the effects of the illness affect far more people - particularly the families who often have to look after them.

For Chu, caregiving meant years riven with a conflicting concoction of love, pity, anger and sadness interspersed with casual heartbreaks and unpredictable disruptions; and of ambition thwarted when she placed the needs of her ill brother over hers.

There is also that disconcerting sense of the unknown, when it comes to the course of the illness, and the agony of not knowing what to expect. Such was the case for Mrs Elise Ting, whose son was stricken with schizophrenia on the cusp of adulthood.

Mrs Ting is a formidable mother and woman. Childhood polio left her lower limbs paralysed. She remembers the stigma of being physically handicapped, but she learnt to deal with that - she went to school, worked, married and had children.

When schizophrenia stole her son - who became inexplicably hostile towards her - she went through the inevitable soul-seeking: Was she not a good enough mother? Why didn't she see any signs of trouble and help him earlier? But at the same time, she was also indignant: Why must the family suffer this illness?

Alongside the grief was anger - but the anger was also a form of energy which galvanised her to fight to reclaim her son. Today, he is free of symptoms, though on daily medication. He works full time and has grown even closer to her. Mrs Ting has also taken the step of coming out in the open about her situation, and is an advocate for mentally ill people. This is no small matter when mental illness has such a baggage of stigma. But she feels it is the right thing to do. Just as she had fought and overcome the stigma of being a polio victim many years ago, she is now engaged in an even bigger battle, fighting for people with mental illness and their families.

The enigma of schizophrenia

THE term "schizophrenia" was coined in 1908 by Swiss psychiatrist Eugen Bleuler, from two Greek words meaning "a split mind".

The popular misconception of schizophrenia is that it is a state of "split personality", in reality, it is a severe form of mental disorder that causes a person to lose touch with reality. Hearing and seeing non-existent things are common, as are irrational and false beliefs. It affects the brain regions essential for language, abstract thinking and appropriate social behaviour, and can be very debilitating.

This illness typically has its onset at that crucial stage where a young person is getting to be independent of his family, forming romantic attachments and making important decisions regarding his future. Its emergence can subvert the ability to carry out these important tasks, and in many cases, it impairs that young person for life. The causes are still unknown, and despite decades of research which has advanced understanding of this illness, its core mystery and many of the problems it engenders remain obdurate.

Burden of care

IN THE practice of medicine where the patient is the focus, it is easy to forget - to use a military metaphor - "the collateral damage" on the family.

In scholarly literature, this is often referred to as the "burden of care", which is of two categories, the "objective" and the "subjective" burden.

Objective burden includes the impact and consequences of the illness on family life that can be observed and verified, including marital conflicts, curtailment of social and leisure activities due to fears of stigma, and financial difficulties.

Subjective burden refers to the raft of feelings the caregiver experiences - sorrow, anger, anxiety and guilt.

The last is particularly pervasive among parents - they wonder if they had bequeathed some aberrant genes to their child or did something wrong in bringing up the child.

Studies have shown that during the acute phases of a serious mental illness, one in 10 caregivers experiences a distressing breakdown in communication. When patients became well again, their relationship with caregivers usually improves. But this is not a given. Sometimes, the hurt, the anger, the fear and the disappointment permeate the relationship.

Hard work is needed to resolve these destructive feelings.

Schizophrenia does not necessarily mean endless suffering. The outcome is extremely variable, and some patients recover completely. In most instances, predicting its outcome is treacherous.

But those with caregivers who walk that long road with them, and cope with whatever might come their way, stand a better chance of doing better.

We admire the grit and resolve of caregivers like Chu and Mrs Ting and are moved by their deep and abiding love.

But we should not expect nor demand that every caregiver be like them, and think less of them if they falter and fall short.

In Aleksandr Solzhenitsyn's One Day In The Life Of Ivan Denisovich, a question was posed: "Can a man who is warm understand a man who is freezing?"

Perhaps, until someone we love becomes mentally ill and we become caregivers ourselves, we might not truly know and understand what it would take to be like Chu or Mrs Ting.

The writer is the vice-chairman, medical board (research), at the Institute of Mental Health.

Opportunity costs of caregiving

IN HIS commentary ("Mental illness: Caregivers are forgotten collateral damage"; last Saturday), Associate Professor Chong Siow Ann described the stoic dedication of two caregivers of people with schizophrenia.

The "objective burden" he mentioned, such as the impact on marital relations and social isolation, is very real and evident in the cases we handle at the Caregiving Welfare Association.

With Singapore's ageing population, we are on the cusp of an inverse pyramid where the burden of care grows bigger while the support of able-bodied caregivers shrinks because of smaller family units.

Caregiving is still a filial obligation that most families try their best to fulfil. But as the needs of the patient increase, the opportunity costs of caring for a loved one at home also rise. This can be in the form of time off work or forgoing of career opportunities.

There is also a social consequence: Younger caregivers who literally dedicate their lives to caring for their parents or siblings at home, missing out on opportunities to socialise. They tend to remain single or delay plans to start their own families, compounding our population woes.

The converse is also true: Families that consider caregiving too much of a burden choose institutional care as the default option. In this instance, the opportunity cost falls on the Government, which has to continue building more infrastructure to cope with demand.

In either scenario, society ends up paying the price - either socially (with even slower population growth) or financially (to fund more nursing homes).

The time may be ripe to think of developing the caregiving service sector because not all aspects of caregiving require a health-care professional. There is also a need for intermediaries like caregiver aides, who are prepared to look after the personal daily needs of the patient at home, besides ensuring compliance with medication.

Whatever form the caregiving service may evolve into, we hope it will be able to serve our caregivers sufficiently well, to give them sufficient peace of mind so they can live their own lives without the "subjective burden" of guilt or anxiety.

Daniel Tan (Dr)
President
Caregiving Welfare Association
ST Forum, 3 Dec 2014