Thursday, May 19, 2011

She has schizophrenia and depression ….and I love her

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.

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 37 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 5 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 (or ECT) as it is commonly known, 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


CT said...

Take heart Mr Fernando. I believe strongly in your cause and am deeply touched by your sharing. I do hope you find the motivation and strength to continue in your journey with Doris. You are a shining example of what true love means. I'm sure other couples who divorce after months of marriage should feel very ashamed of themselves that they couldn't even afford to keep their marriage tgt when tides struck. But you have stuck with her despite the rocky waves. It would be nice if you continued writing Mr Fernando. I really enjoyed reading your books and would really like to read more of them. =)

rayhope said...

Thank you, CT for your encouragement & support. Certainly, I will continue to love and support my dear Doris. God Bless!

CT said...

Just wondering Mr Fernando, why not pursue fictional writing more deeply in the future? I really enjoyed reading your ghost stories. If possible why not try writing full length stories? I think I'd be very keen to read them! =)

rayhope said...

CT: Thanks for your encouragement. I'm glad you enjoy reading my books. As much as my wife and I love writing, we face a barrage of problems in contributing to the literary culture here in Singapore. It is so hard to secure sponsorship or funding for the books that we write. Self-publishing means we have to fork out betwwen $6,000 to $7,000 for 500 copies of the book that we write. After it is written, I face more obstacles- many churchs turn me away when I request to sell the books at their masses. Out of the 30 Catholic Churches, only a handful (3- 4) allow me to do so. They do not realise that I am trying to earn a decent living to provide for the multiple needs for my beloved wife. I do not ask for handouts, but I'm trying to work for a living.

Doris' need are increasing day by day & I have to care for her 24/7. The support mechanism for caregivers for the mentally ill here in Singapore is so very weak. Thus, we may have to "hang up our pens" for an indefinite period until such time when there is more support and compassion for people like us. Singapore will never be an inclusive society so long as the growing needs of the mentally ill & their caregivers are neglected.

CT said...

I am sorry to hear that there are so many barriers to the pursuit of your passion Mr Fernando. If only there could be a way for you and Doris' writing passion to be supported in a country like Singapore. What's the reason so many churches turn you away? Is it because the parish priests are too busy?

rayhope said...

CT: I will never know the reason. They never give reasons. Some tell me to leave it in their bookshops, but I don't do this because , very few people visit the bookshops. Perhaps, they do not want to create a precedence- If they allow me, then they will have to allow others etc. It is really sad that these things are happening, when all I want is to earn a decent living.

CT said...

I see... do take heart Mr Fernando. I do hope God blesses you and Doris with the strength and support to keep pursuing your cause. Do keep writing on your blog though. I find it very inspirational to read and it definately lifts my spirit to read about how you and Doris cope with your struggles. The difficulties you face are far greater than mine and I am ashamed that I get so worked up over the little difficulties in my life.