Wednesday, December 23, 2009 13:03

Loving a schizophrenic

In Uncategorized • 1,085 views • 6 Comments

Raymond Anthony Fernando

I met Doris on Good Friday 1974. She was 20 years old, a young, sincere and caring woman. But three years before, she became stricken with schizophrenia.

Schizophrenia is perhaps the most distressing of all mental disorders. It is a complex illness that affects about 1 out of every 100 people during their lifetime. People with this disorder suffer from difficulties in their thought processes, which in turn lead to hallucinations, delusions, disordered thinking and unusual speech or behaviour. Its effects are confusing and often shocking to both families and friends.

(Above: Raymond and Doris – photo can be found on their website)

Despite knowing this, I decided to take Doris as my lifelong partner. We got married in November 1974, after she turned 21. I was 23 years old then.

Many people have asked me why I willingly married Doris despite knowing of her mental illness. My answer is a simple one: If schizophrenia is a part of the life of the woman I love, then it must surely be a part of mine too. I do not necessarily like what the illness does to her, but it is her person that I love. And that has, and will always be, the guiding, motivating force of my life.

Since I married Doris 35 years ago, I have gone through an extremely difficult and lonely journey in seeking to provide the necessary care and help for my wife. Even our own relatives have distanced themselves from us because they refuse to share in caregiving duties. Furthermore, the social stigma that plagues those who suffer from mental illnesses make it even harder for us to seek help from society.

Let’s face it – when you or your loved one is stricken with mental illness, you are all alone in this world.

Despite the many successes Singapore have achieved, the numerous ‘number one’ accolades – the best airport, the best port facilities and so on, our country and civil society comes up dramatically short when it comes to the mental health care system.

Finding employment is one area where people who suffer from mental illness experience huge difficulties. Many patients are unable to find work; most job application forms require job seekers to declare if he/she she has mental illness, thus placing sufferers of mental illness at a clear disadvantage.

But finding employment is an important part of the recovery process, and helps patients lead a better quality of life. When recovered patients find work, it gives them a sense of worthiness and allows them to be self-reliant. They could take up jobs that are not highly pressured, such as clerical or data entry work. Jobs in the food and beverage industry, cleaning and security could also be offered to these recovered patients.

Yet the requirement for patients to state their history of mental illness would almost certainly prevent them from securing a job.

The usefulness and necessity of this declaration needs to be looked into. Its removal perhaps would go a long way to help people who have suffered from mental illness find meaningful employment. If the public sector takes the lead and removes this clause, I have every confidence that the private sector will follow suit.

Financial problems are also very common to patients and their families. While charitable foundations raise funds on a national level for various illnesses, such as kidney failure, mental illnesses do not receive similar attention and support. I myself have made several appeals for money to be raised for the mentally ill, but my pleas have gone unheard.

Yet this is a group that is in dire need of financial assistance. Patients themselves, as I’ve already mentioned, would not be able to hold down a job. But those who look after them are also heavily burdened; caring for a loved one suffering from mental illness requires dedicated care round-the-clock. As a result, many caregivers have to give up their day jobs, further increasing their financial difficulties.

The government should consider ways of alleviating such financial stresses. One possibility is to offer grants for patients who have recovered from their mental illnesses that allows them to work from home. Patients who have literary or artistic skills could be provided with grants or sponsorship that pays for the publishing of their books or paintings, which will in turn help them to earn some income from royalties. They will feel uplifted and encouraged once people show support for their work.

My wife is a good example. She has benefited emotionally from the success of her books, and is motivated to continue writing. By doing so, it keeps her mind actively engaged, thus preventing dementia from also setting in.

Besides providing financial assistance to patients, the caregivers themselves will also benefit immensely from government aid. A caregiver’s allowance, for instance, would help alleviate any financial troubles they may have. Such a support scheme will help to raise the quality of caregiving, and should not be regarded as a handout.

But sadly, such grants are hard, if not impossible, to secure. Some organisations that I have approached, such as the Centre for Enabling Living, are reluctant to make the appeal on our behalf. Others such as the Lien Foundation and the Shaw Foundation have turned down my request for sponsorship after I wrote to them on an individual basis.

Such difficulties extend to other areas in our daily lives as well. When I wanted to take up a life and medical insurance policy for my wife, insurance companies turned me down. As my HDB flat underwent a lift upgrading programme, I had hoped that a day care centre could allow my wife to use their facilities, as the excessive noise could trigger a relapse of her mental illness. But my request was rejected; I was told that persons with mental illness are not allowed to use their facilities. Although the day care centre management eventually offered my wife the use of their facilities after I wrote a letter to My Paper, I had to decline as I was unable to afford their $900 monthly fee.

Many families who have relatives suffering from mental illness are finding it so hard to cope. I know this very well because I sit in support groups where caregivers often breakdown and cry uncontrollably when they have to struggle in caring for their stricken ones all alone.

Beyond the lack of material assistance, the equally-crucial element of emotional support for caregivers is also very weak. Having witnessed firsthand how my wife has suffered horrifically from schizophrenia, I personally have gone through much mental stress and anguish.

We do not have a system in place where the caregiver is given unconditional support when a loved one suffers a relapse. Each time Doris suffered from a relapse and had to be warded in the Institute of Mental Health, I go through enormous emotional pain. There was no one to comfort me during these most depressing moments. Many a time as she went through electro-convulsive therapy to bring her back to a stable condition, I am left alone without any emotional support.

Even the media is not very supportive. Local television for instance helps feed the prevalent social stigma against people who suffer from mental illness. Mandarin television programmes often use the phrase ‘shen jing bing’, which translates as ‘crazy’, in local Chinese dramas and this insensitive language aired during prime time is not helping to de-stigmatise mental illness in Singapore.

Little wonder why persons suffering from mental illness are always shunned and isolated. And even though I have raised this issue, such as by writing to a newspaper, I still hear this remark being used frequently on television. There needs to be greater public sensitivity to the emotional damage such phrases can do to people whose lives are already greatly strained by mental illnesses.

***

Raymond and Doris’s website: http://www.rayofhope.per.sg

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6 Comments

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3rdKlassCitizam
Dec 23, 2009 15:50

Excellent article on the social acceptance of a mental patient.

I have too a closed relative who is suffering from schizophrenia. It is tough for an outsider to understanding the difficulty faced by the caregivers. It starts from making the patient to realise his illness, making him to seek medical help, and making him to take medication regularly. It is a tough long road.

We glad we did not seek any religious help as I know there are family resisting the idea of visiting a mental health institution. There is a huge stigma attached to a mental patient. The affected family members prefer to make him go for religious consultation. Often, without medication, the illness get worsen.

I would like to take this opportunity to tell the public about removing the bad name of mental illness.

1) Brain is one of the most complex organ in a human body. The heart, kidney, liver, etc can go wrong sometime. So do the brain. Please don’t see mental patient with a biased mind. It is the chemical unbalance in the brain. The patient needs seek help early and he/she will be cured early. (This applies to depression, bipolar, oppressive compulsive behavior, etc).

2) Only a very small percent of the mental patient is violent. Please do not overly behave as if they will hurt you.

3) Avoid using words like ‘crazy’ or the such. Brain aliment such as Alzheimer, parkinson’s disease or dementia may catch us up one day when we are old. Be compassionate and help the unfortunate today.

sloo
Dec 23, 2009 21:22

I can only say bravo to all your tireless and supportive love for your wife. Truly you are an inspiration not only to your wife but to many people who take love and their lives for granted. Your continuing fight for society to accept the mentally ill is also truly admirable.

Jackson Tan
Dec 24, 2009 21:36

Raymond, your devotion to your love and your wife is most touching. It takes tremendous courage to take the step you took, to marry her even as you at the age of starting out in life on your own.

True enough, there is insufficient awareness of the multitudes of mental illnesses, and often Singapore society has a tendency to ridicule or avoid them. Perhaps it all comes down to compassion — I don’t know really — but I think Singaporeans can certainly do more, even if in just their behaviour.

Considering the woeful situation of medical welfare in Singapore, I’m afraid most of the help will have to come from NGOs and kind people out there.

leesjuanpat
Dec 25, 2009 6:32

Kudos to you Raymond A. F. for your untiring effort to higlight the difficulties faced by patients and caregivers. And i must really take off my hat to you for the dedication, care and love bestowed on your wife, Doris.

The cold-faced society of ours has much to do with the octracism. The social stigma as you said, attached to it, is another heart-shattering reality.

A country like Singapore, with a high cost of living, can be even more stressful, to the sufferers and the care-givers given that minimum support is available. Our government may not be going much in this area to alleviate their lives.

Public awareness of mental illness and schizophrenia is least understood. And superstition also plays a part in the illiterates, to view this illness as a possession by some sort of evil.

Greater empathy and compassion must be shown and social acceptance is the first step to integrate these sufferers back into society. It has to begin with employers lifting the barrier, to accept employment for them.

In the early years of my childhood, we were brought up by grandmother’s tales of not going near a ‘mad’ person because they are dangerous. Those were the days of absolute ignorance of beyond. In today’s world with medical science and cure, sufferers can lead a normal life with the right medicines. Society should change the mindset on these people.

The cosmic vastness of creation brings forth lives into this world where many treasure it as a gift of God.

We are living in an era of the extremes in this modern world. Many a life seems worthless, with daily death and terrorists sucide. Many innocent lives perished.

And many who want to live a decent life are not given a fair change. Sufferers of mental illness are not criminals and for all fairness, they are as human as we are, they have a right to be among us.

Raymond, loving a schizophrenic is not a crime and for that matter your wife of 35 years from day one and before. I salute your greatness of mind and spirit. Love her through eternity.

“We love the human race, it is the human that betrays many a human”. -leesjuan

agongkia
Dec 26, 2009 10:27

Raymond,I am touched by your article.

I too had that experience before.Sad to note that they are often neglected and had been shun by many.They also do not enjoy much priviledge .Many people not only avoid them,they also make fun of them without knowing their condition.Reminded me of a case where someone took a picture of a man clad only in red underwear,put his back photograph that he captured and put it in STXXX..Some innocent readers even even comment “ang ang kakilarng”.

Its a good reminder to those people to show more compassion to these people .

we
Dec 29, 2009 4:24

the world will never be able to love a schizophrenic, and you can’t change it. But you are the greatest gift the creator has given to her, and perhaps that is good enuf for her.

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