Who cares for the caregiver?
A mind in chaos and the power of love
Raymond Anthony Fernando -Model Caregiver 2007 and Mental Health Champion 2010 shares his true story about his wife’s battle with schizophrenia and depression and arthritis
“Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover.”
– Mark Twain –
Introduction
The captioned words above of Mark Twain had long ago set me thinking as to whether I should take the road less travelled and become a voice for the thousands out there who are struggling with the stresses of life. I brushed away this thought, only to see it resurrected again during my journey as a caregiver to my wife, Doris Lau Siew Lang who has to struggle with schizophrenia and depression, amongst other health ailments.
My intention in raising the plight of the mentally ill and their caregivers over the last six years in the media was to seek understanding and support from the Government and society as a whole. I have also made some suggestions to improve our mental health care and I am encouraged that some progress has been made. However, we still have a long way to go before as far as mental health is concerned.
Many people in society, even educated ones, are still indifferent to the mentally ill. A large number of people choose to remain indifferent because of fear. Their fear and lack of understanding of mental illness often leave the afflicted shunned and discriminated against. This fear, when left unchecked, will continue to obstruct moves towards a more compassionate society, in which we care more humanely for the mentally ill within our community.
Though the story of my life with Doris is a touching one, caregivers do not need sympathy. What they need is support and understanding
Some data on mental illness. Worldwide, an estimated 800,000 sufferers of mental illness kill themselves every year. Another startling revelation: worldwide, mental illness strikes one in four people, and two-thirds go without treatment.
In Singapore, more people die from suicide than in road accidents. Of the more than 1,700 suicides between 2000 and 2004 (an average of 340 a year), up to seven in ten victims had some form of mental illness. Earlier studies indicate that one in six people suffer from some form of mental illness.
What is schizophrenia? Schizophrenia is one of the most distressing mental disorders. The illness first struck Doris at the tender age of 17. Today, my wife has to cope with several other chronic illnesses – severe arthritis that leaves her mobility impaired, diabetes, high cholesterol, incontinence and stomach problems. Managing Doris’ medication and taking her to see several doctors can be very stressful. She takes 43 tablets a day- 21 of these tablets relate to the control and treatment of the schizophrenia. During our 37 years union, my wife has suffered 11 relapses of her schizophrenia, and the price is just too high- financial, physical and emotional.
Schizophrenia alters the way people think and feel, so that perceptions may be changed and thinking can be disturbed. This is very disabling for them and very distressing for their families, who often become the primary caregivers.
One of the cruellest aspects of the disease is that the sufferers so easily alienate those closest to them before anyone knows that they are ill. It effectively robs them of the love and support that are vital in dealing with the devastation wrought by mental illness.
Additional Pain and misery brought upon by physical ailments. Even though Doris is currently coping well with her mental illness and many others can also be helped to control the condition with the right support, a relapse of her schizophrenia is always possible. It’s like walking in a mine field – you never know when the bomb will explode! This is because of her struggles with arthritis, which often leave her in severe pain and misery.
People with mental illness can relapse if a severe physical illness is not properly managed. Doris worries a great deal that one day she might not be able to walk. I have to constantly assure her that despite all her ailments, I will continue to care and love her to my last dying breath.
Caregiver strain and burnout. The strain of looking after my wife for more than three decades is badly affecting my own long term health I am experiencing nerve and eye problems. I worry a great deal. If my health suffers, who is going to look after my beloved wife, and I certainly do not want her to end up in a nursing home? This is why it is imperative for Government-led support for the mentally ill and their caregivers. I have suffered burnout countless times. The reality: When you are looking after a family member with mental illness, you are all alone in this world. Sitting in support groups has also made me realise that there are many caregivers who are suffering in silence. Some caregivers are looking after more than one person suffering from mental illness. This is the main reason why I have been pleading for support for caregivers. Many a time, the focus is on helping psychiatric patients and the caregivers are completely forgotten. When caregivers of the mentally ill do not get the vital structural support which they so badly need, they too can develop mental illness. It happened to me.
In 1995, stressed out by family life and work, I attempted suicide. I was fortunate to have been saved. But just imagine what would have happened to Doris if I had lost my life.
Stress on marriages. Often marriages are put to the test when couples are confronted with financial problems or if a spouse is stricken with chronic illnesses. Divorce cases are going up In Singapore and are expected to rise as the stresses of life find people simply giving up. Many couples don’t have the resources physically, emotionally or financially give their troubled marriages as fighting chance. I have seen the rewards of sticking by my wife through thick and thin. Strange as it may seem, I have grown to love Doris more and more as I see her suffer and struggle with so many illnesses.
Embracing hope. Despite facing adversities, I continuously look out for new directions and opportunities in my life and that of my beloved Doris so that I will have the financial means to support my wife, and for her to break free from schizophrenia and depression which has ravaged more than half of her life.
I hope that our love story will inspire, motivate and encourage caregivers not to give up in caring for their own stricken family members.
I am a regular contributor to the forum page in the newspapers and I have been putting forward informed proposals for improving the mental health care system in Singapore. To-date, I have written 102 letters to the press on mental illness and other social issues. In addition to the obstacles and hardships I have personally experienced in caring for my wife I have also personally come across cases where families live in dire straits and read of others in the media. The culmination was that I felt a calling to speak out on issues that may improve their well-being. All these efforts, I hope, will translate into giving our marginalised communities the support, which they are in dire and urgent need of. I hope in the future others will not feel as helpless as I do when I see Doris in pain – both physically and mentally.
Certainly, our journey will definitely be made much easier if Singapore has a good caregiver structural support system in place. If we aim to be the leading mental health care system in Asia by 2012, then we must also have this good caregiver support system in place. This is an area which I hope the Government will give more attention to.
Even though I had to give up my job ten years ago to care full-time for my wife I did not allow such circumstances to dictate my life because I fervently believe that, “Sometimes something good can come out of something bad.”
Bouncing Back
In 2004, I managed to bounce back, and decided to write about my wife’s struggle with schizophrenia in a novel entitled, “Loving a schizophrenic”. This is a true story written by me about my wife who suffers from depression and Schizophrenia. (The names have been changed to protect the characters in the story from prejudice and discrimination). A heart-warming story of the healing power of love, this book chronicles the trials and tribulations of our courtship and 30-year marriage. It also provides an insightful peek into caring for a loved one stricken with mental illness. This is the first time that a caregiver in Singapore has written such a book and it is intended to raise awareness of mental illness.
This book eventually went on to become a best-seller and moved hundreds of readers, including those from overseas.
Later, I went onto author ten other books. Then another “window” was opened. With much emotional support and love Doris, has been helped by me to become an author herself of not one, but five successful books. This is truly a remarkable achievement for someone suffering from a serious mental disorder.
Readers who wish to purchase this book and help me find the means to support my wife and I, can do so via my blog spot, see below, or at the Reform Party Open House and other events. The book costs $15.
Charting new directions
This novel was the turning point for me. From here, I went on to chart new directions in life.
I have counselled troubled youths and adults on FACEBOOK and even invited caregivers and patients into our home to encourage them to go for treatment by using my own wife’s coping skills to motivate them.
To give people who face challenges in life, hope, I give motivational talks all over Singapore encouraging my audience to walk the journey if and when they are confronted with difficulties. I would like to reach out to the heartlands where many cases of suicide and persons suffering from mental illnesses are troubling.
As a further means to encourage people to stay resilient and happy despite facing adversities, I have shared our life story on national television 6 times, 3 times on radio and in many occasions in the press.
My wish list
I hope that my plight, as with journey of other patients and their caregivers will help bring about more support for us, and here’s part of my wish list:
( a ) Raise funds for the mentally ill on a national level
We must understand that those with mental illness and their caregivers face great challenges: stigma, financial and social support, employability, housing difficulties, crisis intervention and high rate of relapses.
This is why I have been pleading, through the media, for the Government to raise funds for the mentally ill and their caregivers on a national level. If we can raise funds on a national level for physical illnesses such as cancer, heart diseases, kidney ailments etc, then why can’t we do so for mental illness, given that it is never easy for persons with mental illness to secure jobs. Caregivers too may have to give up their full-time jobs to look after their stricken ones. This means a loss of income.
(b ) Clause on declaration of mental illness on job application forms
I strongly feel that the clause requiring job seekers to declare that if he/she has/had any mental illness on the job application form is outdated and places those who are seeking treatment for depression and other forms of mental illness, at a clear disadvantage. If we want to give every citizen equal opportunity, then such a clause, inherited from the colonial days, should be removed.
( c) Provide tasty cooked meal delivery service for caregivers and their stricken ones
Until today, I cannot secure some tasty cooked meals for myself and my wife. When I was warded in Tan Tock Seng Hospital (TTSH) a few years ago for a prostrate operation, I was given some delicious nutritious meals at the C class wards. So, nursing homes can learn the skills of the cooks at TTSH. There are also far too many regulations, restrictions and obstacles that make home delivery for cooked meals impossible to secure. If I can get proper cooked meals delivered to us for just 3 times in a week, it will help me to find some respite, given that my wife can no longer do cook and do housework because her arthritis condition puts her at fall risks.
( d ) Transport costs
My wife who is unable to take the MRT or bus depends on travelling by taxis because as I mentioned earlier, she is at fall risks. On the average, her medical appointments, blood tests, X-rays etc., can be as much as 4 times in a single month. Quite a number of her medical appointments fall within the peak hour period- leaving me to incur additional taxi fee payments when the taxi surcharges and ERP charges set in. Given that I do not have a full-time job, I hope that people with disabilities can be exempted from these additional taxi charges. I have made appeals, but my repeated cries for help have been unsuccessful.
Conclusion
As Singapore journeys towards becoming an inclusive society and caring nation, it must bear in mind that there will always be people who may need more help. And undoubtedly, the mentally challenged, the lonely elderly and their families are some of those who need a great deal of help.
Many people have asked me why I willingly married Doris despite knowing of her mental illness. My answer to them is simple: “If schizophrenia and arthritis 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 illnesses do to her, but it is her that I love. And that has, and will always be, the guiding, motivating force of my life.”
Sincerely,
Raymond Anthony Fernando
Raymond’s blog: http://rayhope8.blogspot.com
http://rayhope8.blogspot.com/2011/01/next-book.html
See above for details on ordering Raymond’s books.
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The Ricebowl Singapore (TRS) 
Very interesting for me as a caregiver. I want to read more.
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@Raymond: It is understandable when facing something as disorientating as Schizophernia. All directions seem to have no direction and one feels left out of God’s plans. But have Faith bro. His loving Hand has been there for you and all of us.
Even for my family when my mother lost her hearing in one ear for no seeming reason some years back. Ironically, she listens better even with one ear today, through better attention.
I believe in time, my family, your wife and you and I will understand God’s will when He guides our situations and our society at large toward more stronger, empathetic and independent destinations to come. My deep conviction is God cares because He is Love and most of all, He is in you and me.
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What Jashorn mentioned about supportive church friends is very true. My wife, Doris and I get some measure of support from church friends. Very few people understand how schizophrenia can tear the mind & body of the sufferer.
Yesterday, I brought my wife to the polyclinic to do her blood & urine test for her diabetes treatment. After drinking several cups of water, I asked her to go to the toilet to place the urine in the bottle for the lab carry out the testing. What she told made me almost burst out crying. She told me that her mind sometimes cannot tell if she has the urge to go to the toilet. Although , she is stable, these are some of the painful struggles of the patient as well as the caregiver. I sometimes wonder why my wife has to suffer so much- she is a good, decent human being who has also contributed so much to the economy during the period when she was gainfully employed. She would not hesistate to help someone in need, although we are far from rich. She worked as a secretary in the 70s’.
Now who cares for her?
Raymond Anthony Fernando
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Empathy in our fast-paced, self-centred capitalistic “you die your business” society has been eroded tremendously since our society became so competitive that practically everyone strives rather than thrives these days. Other than our own Families, I feel that the two main Singaporean avenues for growing Empathy/Understanding for the disabled/less “advantaged” were our schooling days and national service/reservist days where we were actually faced with the reality of……treating people as people.
Empathy runs two-ways and has to be shared~> I wouldn’t be surprised if people would slowly, but surely, follow the example of a government that is much more caring and sympathetic to the needs of the people they were elected to serve. This is probably the reason why our people are that dramatically surprised and gratefully happy in response to even a simple act of receiving a MRT seat we witness these days. Rather than seeing faceless entities, we see fellow people whose point of view are gratefully shared.
Having Empathy + Compassion is the result of a good life education, both at home, in school and NS, whilst growing up. Having a faceless sprinting society of workers slaving away for glorious GDP figures is something I find unlikely amidst this current societal reality of gimme more Profits or you lose your living!
Time is not on our side, especially with so much global change and migrant mobility from everywhere.
I am single and not likely to afford children under the current system we’re in. I know someone who’s mildly Epileptic who has been ostrasized by employers, by girls he tries to date or even some friends who keep a distance. But I am greatly enheartened by how much his family, friends in church, and former school mates still reach out a helping hand without his asking on numerous occasions over the many years I’ve been his friend.
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@Jashorn. One of the problems I feel is that as a society we just don’t see or mix with people with disabilities whether those are visible disabilities, hidden ones, well recognised and understood conditions or relatively unknown and feared. I remember (back when I was still living in London ) that I would visit with my toddler son in a pushchair . It was so physically difficult to get anywhere. The first thing we asked ourselves was, “How does anyone in a wheelchair get around?” The second thing was, “Where are the people in wheelchairs by the way?” It is a matter of national shame that children with disabilities are denied an education . Even children with conditions such as Asperger’s syndrome who have average and above IQ’s are not catered for in our schools. They have to be home tutored unless you can afford an International School education and that will only be from secondary level.
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@Raymond: yours is an amazing story. Both of you are incredible individuals. All the best and please continue sharing and reaching out. We’ll never know if the voices in need are silent.
With regards to the general topic about disabilities, I think the issues are several fold:
1) It harks back to an outmoded way of thinking where the less abled are shunned. Did anyone read Lee Wei Ling’s article on Sunday?? I’m appalled.
2) Little has been done over the years to change the general public’s perception.
3) Little has been done to help those with disabilities lead as independent a life as they possibly can.
4) Not enough facilities or services to support the less abled.
Where this is concerned, SG is a developing country. But it’s possible to change things. The task is huge but it can be done. And I wouldn’t be saying this if I had not witnessed how the less abled get around in real developed countries.
Lastly, and I think this is of absolute importance too – respecting the abilities of the disabled and not over-protecting them. It’s a fine line, but I believe it’s important they’re able to hold their head high with dignity. I’ll clarify by saying that my father was horrified when he visited us overseas to see people in wheelchairs out on their own. One was even speeding down the equivalent of Orchard Road (I kid you not!). He thought it was just wrong – that there should be someone with them. I admire their independence and their attitude, but I know it’s society that has given them the abilities.
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@Kenneth: Your points are valid. The main aspect about our Society as noted by countless economists and sociologists is that we’ve been mobilised, “created” as a Society of Workers, and hardly a society of Caring/Empathetic People. That was why I think the late Dr Goh Keng Swee, our nation’s former social architect, was so concerned that even amongst his citing “CreativeThinking/Character/Morals” as the only ways to bring our society forward, he was of a strong conviction that good Morals were the key element that was clearly needed and unfortunately, missing. Morals that create the Empathy.
Combined with Character that is exemplifed in the Courage to step out and lend a helping hand regardless of public attention or what others say.
Our schools are I feel, currently, too much of pseudo car-Showrooms rather than places where a Love for Learning, and for loving all others is taught. No less worsened by the Kiasu relentless Tuition culture of today that so many of our children – our future adults – are put into by parents fearful that their children would be left out in the future. The irony is too many of us are indirectly “teaching” our children to leave out all else other than schoolwork – a Leaving out that subconsciously creates a mentality of self-centredness. Leaving out others such that ME comes first, period.
Our country desperately needs a revamp of Me into We, from young consumers into young and future adult Carers.
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Thanks for your support, Kenneth. Very much appreciated. God Bless!
Raymond Anthony Fernando
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