Loving a schizophrenic

The story of one man's love for his mentally ill wife as they tide through with inadequate assistance in Raymond Fernando's own words.

This article is written by Caregiver Raymond Anthony Fernando and has first been been posted on The Online Citizen website on 23rd December 2009.


I met Doris on Good Friday 1974. She was 20 years, 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.

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 to them is a simple one: If schizophrenia is part of the life of the woman I love, then it must surely be part of mine too. I do not necessarily like what the illness does to her, but it is her that I love. And that has, and will always be, the guiding, motivation 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 harder for us to seek help from society,

Let's face it - when you are looking after a loved one 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 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 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 mental illness 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 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 Anthony Fernando
Caregiver to Doris

Raymond's letter to the New Paper: IMPROVING LIVES OF CITIZENS: Why not have an NMP with disabilities?

My letter to the New Paper is published in the New Paper today, Tuesday 29 December 2009, page 17. Check it out!

I refer to the report, “He always has time for us” (The New Paper on Sunday, 13 Dec).
Indeed, Mr Chiam has time for everyone. Even though I am not from his constituency, when I write to this opposition MP, he, his wife or his town council staff makes every effort to keep in touch with me.

Mr Chiam is very sympathetic to my wife's disabilities and my struggles as a sole caregiver. This is what makes for an outstanding MP.

I fully agree with the Prime Minister that the Government cannot solve all problems and that Singaporeans must play their part in nation-building.

But over the last year there has been so many reports of Singaporeans committing suicide and struggling with the stresses of life.

This is why I have been raising issues of the mentally ill, the elderly and the sick through the wonderful support of the newspapers who have walked alongside me for several years. Indeed, the media too have contributed to nation-building.

But what is equally important is for government agencies to respond when citizens put up suggestions and ideas that can help to improve the lives of all our people.

Though critics have called on Mr Chiam to retire because of his age and his stroke last year, this dynamic MP has proven that age or illness is no barrier to being a force to be reckoned with. Certainly more opposition MPs of Mr Chiam's calibre, who can provide alternative views, will improve the lives of all our citizens.

Recently I met an ambassador who told me me that a disabled person was elected into Parliament in a western country. And because of his political influence, he was able to secure better benefits for people struggling with disabilities.

If an NMP(Nominated Member of Parliament with disabilities can find his/her way into the Singapore Parliament, he/she may be able to further champion the plight of all those with disabilities, including mental illness. Surely, this is an idea for the Singapore Government to mull over.

RAYMOND ANTHONY FERNANDO

Catholics brought the joy of Christmas to us

For my wife, Christmas is enjoyable when she is able to attend mass, sing the beautiful Christmas hymns and admire the decorations and flowers at our church. She is a simple person with simple needs.

The people who brought the joy of Christmas to us this year (December 2009) were kind-hearted Catholics like the newly wedded couple who treated us to a delicious dinner at a Chinese restaurant and a tour of Suntec City to see the bright Christmas lights and lovely decorations. They have pledged to spend Christmas every year with us, and it is a virtue that my wife and I will always look forward to and treasure.

Our church volunteers from the Church Of Holy Spirit took us for a seafood dinner and also a tour of Orchard Road to see the dazzling Christmas lights and decorations on 6th December. They also organised a fun-filled Christmas party and presented my wife and I with lovely gifts. The church choir came by our home on 23rd December and sang Christmas carols that brought sheer delight to my wife, who continues to struggle with five chronic illnesses, including schizophrenia and arthritis. The choir went the extra mile and presented my wife with a nice Christmas gift. The joys of Christmas was made possible by our Parish Priest, Reverend Father Andrew Wong who is able to feel the suffering of those who are in less than fortunate circumstances.

Two days before Christmas I bumped into Reverend Father John Bosco Pereria at Thomson Plaza. The first thing he asked me was how my wife and I were coping. I was deeply touched by Rev Fr John Bosco's care and concern. Undoubtedly, this is yet another Catholic who has shown compassion and kindness to us in the midst of the many uncertainties we face in our daily lives.

I am also encouraged that CARITAS has plans to initiate a new group for mental health over the next three years.

We are happy that with the continuing support of the Catholic community, we will no longer have a Silent night come 24th December every year.

I wish all our readers a Happy and Prosperous New Year.

Raymond Anthony Fernando
Singapore 560601
27th December 2009

Fine, Jail for failing to maintain windows:Raymond's letter to the New Paper:

Raymond's letter to the press is published today in the New Paper, Wed, 23 Dec 2009, page 21. Check it out!

I refer to the article, “More cases of falling windows” (The New Paper, 12 Dec ).

The move of HDB and the Building and Construction Authority to impose a fine of $10,000 or a one-year jail sentence, or both on homeowners who fail to maintain their windows is heavy handed.

It will cause more hardship to Singaporeans who may not be able to afford to replace their aliminium rivets and screws with stainless steel parts.

Unlike flat owners, offices have maintenance staff who can monitor the windows in buildings.

Many Singaporeans are still struggling to pay the mortgages on their HDB flats and for those earning below $1,500, the $10,000 fine can be as much as they spend on household expenses for a whole year.

The stiff jail sentence will also cause more anxiety to our citizens when many are already worried about their jobs. A build-up up anxiety can lead to depression and other mental disorders.

Instead of setting out a blanket rule to penalise homeowners, the HDB with the assistance of grassroots leaders and the MP for the area should visit homes to find out why flat owners have not switched to the recommended rivets and screws.

For needy Singaporeans, can't an interest-free affordable instalment plan be worked out to fix the stainless steel rivets and screws?

Rather than fine people for this and that, the Government should look into the welfare of the needy, the elderly and the sick, many of whom are either cramped in one-room flats or are dying alone.

I also found the report on the elderly who live in one-room flats, “ I may also die alone” (The New Paper, 13 Dec) terribly upsetting.

Surely our old folks who have planted their roots here deserve better support.

RAYMOND ANTHONY FERNANDO

Killer litter: Raymond's letter to the Straits Times (ST)

My letter to the Straits Times on on the woman who displayed signs of bizzzare behaviour was published today, Friday 18th December 2009 in the ST Forum page, A30.

P.S. I will continue to wage an all out war againts those who discriminate and ill treat all people with mental illnesses, the sick and the elderly.

Thanks
Raymond Anthony Fernando

MY POINT

Killer litter:
“I refer to Tuesday's report, “Killer litter flowerpot injures guest at wedding”. People whose marriages break down are likely to fall into depression or become unstable. What I find disturbing is that although neighbours were aware that the 34-year-old woman was displaying signs of bizarre behaviour, no one bothered to get her help. The crowd that cheered and clapped as police led the woman away should feel ashamed of their behaviour. The mark of a civilised society is the way it treats its least privileged, the sick and the elderly.”

Raymond Anthony Fernando

Letter to the New Paper: Taking care of mental patients

Letter to the New Paper: More help and support needed

My letter to the New Paper was published today, Thursday 17 December 2009, Page 21

I refer to the report, “I am confused about how my wife died” (The New Paper, 11 Dec).

The depressing events surrounding Madam Hoon Ai Choo's death and how her confused husband did not realise that she had died, once again demonstrate the total isolation and lack of support psychiatric patients and their caregivers continue to face in their lives.

It must be heartbreaking for Madam Hooi's husband, Mr Lua to come to terms with her tragic end. I hope that he gets all the support that he badly needs.

Over the last few months, there have been many cases of people losing the will to live.

On the 8 Dec, a depressed widow of the bridegroom found dead outside the Hilton Singapore hours after their wedding banquet was rushed to hospital with cuts to both her wrists. Madam Kerin Peh had attempted suicide because she could not cope with the loss of her husband.

I was also deeply saddened to read of the report in which a 50-year-old Indian diver had committed suicide after his wife left him and when he faced financial problems regarding payments to his flat.

I relate well to these cases because as a caregiver to my wife who has mental illness, I face huge roadblocks in providing a safe haven for her.

On many occasions I had wanted to buy an insurance policy for my wife, but it was rejected because even notable insurance companies do not allow coverage for psychiatric patients. Why?

I had approached the newly set-up Centre for Enabling Living (CEL) twice to ask them to source for funding for the books that my wife and I can write, but the management flatly refused to help to put up the appeal on our behalf.

What is the point of setting up an organisation that refuses to attend to the needs of patients with disabilities, especially when we both have to write for a living?

The nationwide survey on mental health will take one year. In the meantime, what measures are there in place to save and rebuild lives?

RAYMOND ANTHONY FERNANDO

Mental health-care system needs major overhaul

Mental health advocate responds to the nationwide mental health survey: Mental health-care system needs major overhaul

Raymond Anthony Fernando's letter to the New Paper was published today, Wednesday 2 December 2009, Page 10.

I refer to the article on a nationwide mental health survey, “15,000 Singaporean adults to participate” (The New Paper, 25 Nov).

Due to the dearth of information on mental health, many people still believe that mental patients are a burden to society. Television dramas often portray mental patients as violent people who are trouble makers.

When we do not understand mental illness, we become biased against the sufferers.

With this survey, I hope that the Institute of Mental Health and the Government will make a concerted effort to provide better support for caregivers.

This is a group that is vulnerable into developing mental illness themselves because of the tremendous stress they face in caring for their loved ones.

In 2006, when my wife suffered her 11th relapse of schizophrenia, I was depressed and I could not get any support from any of the mental health providers.

One told me: “I'm sorry to hear that your wife has had a relapse. Please take care of yourself.”

A nurse manager suggested I see a psychiatrist and go back on medication for the depression that I struggled with in 1995. I refused to go back on medication because all I wanted was for someone to comfort me and walk me through that difficult period.

To tackle mental illness head on, a holistic approach, involving perspectives of doctors, patients and caregivers is needed because if you are a caregiver for the first time, you will be groping in the dark.

Even though I have wealth of experience in caring for my wife who has excelled in life through her literary skills and my encouragement, it has not been easy for me to change mindsets, even among mental health-care providers.

It is time to re-look the bridge to mental health care, for the system needs a major overhaul.

RAYMOND ANTHONY FERNANDO