Friday, October 28, 2011

Highlight plight of caregivers: Raymond's letter to The New Paper

 My letter to on the above subject is published in The New Paper today, Friday, October 28, 2011, page 21.


I have been following the fortnightly articles by Prof Lee Wei Ling with much interest; the recent one being living a life with no regrets.



She talks about the lifestyle changes she now has to make to take care of her father, former prime minister Lee Kuan Yew who at 88, and recently widowed, is “less vigorous” than he was before 2008 when the late Mrs Lee had a stroke.


Coping with illnesses can be difficult. It can be draining for the caregiver when he or she has to take care of a loved one stricken with a chronic illness or worse, multiple chronic illnesses.


Often don't plan for these things to happen and when we are caught off guard, we feel lost, hopeless, isolated, distressed and trapped. 



Coping with long-term illness can be complex for both the caregiver and the care-receiver. The entire family's social life, emotional stability, financial resources and physical health will be affected.  


Family ties can also become strained when relatives do not want to share in caregiving responsibilities. 


Those who are financially secure can hire a maid or a nurse to care for the sick.  But if you are hard on cash, doing all the caregiving on your own can become a burden.


Actually, caregiving should be praised as a noble job and the media should highlight stories of Singaporeans struggling to cope with chronic illnesses.




RAYMOND ANTHONY FERNANDO




Wednesday, October 26, 2011

CEL's master plan : Where's structural support for mentally ill, caregivers?

My letter on the above subject is published in The New Paper today, Wed , Oct 26 ,2011, page 20.

In its Masterplan for 2012-2016, the Centre for Enabling Living (CEL) is endeavoring to identify the needs of persons with disabilities at every phase of life, and see where there are gaps.


I read the information on CEL's website, but was disappointed to discover that other than the mental capacity act, there is no provision that covers proper structural support for persons suffering from mental illness and their caregivers.


Mental illness, like a physical illness, can be disabling. Person with mental illness are just as entitled to support as persons with a serious physical illness. This is what makes for an inclusive society.


I would therefore like to know if there are plans to provide a good structural support system for caregivers of the mentally ill & their afflicted loved ones in CEL's master plan.


A secondary question: Is there anyone to represent psychiatric patients and their caregivers on the CEL sub-committees? And if so, who represents us?


Getting people who have walked the journey will enable the Government to fully understand the struggles and growing needs that the mentally ill and their families face in their lonely and isolated lives.


Singapore can become an inclusive society only if it looks after all sectors of the population.


RAYMOND ANTHONY FERNANDO






































Tuesday, October 25, 2011

CEL's master plan-2012-2016 : Is there a support plan for the mentally ill & their caregivers?


On September 20, 2011, the Ministry of Community Development, Youth and Sports (MCYS) announced a new Enabling Masterplan for 2012-2016, which will serve as the national roadmap for the development of programmes and services for persons with disabilities over that period. This Masterplan will endeavour to identify the needs of persons with disabilities at every phase of life, and see where there are gaps in the current landscape.

The Centre for Enabling Living (CEL, website at www.cel.sg) was conceived by MCYS as part of the national care network to coordinate care for persons needing care, and is the secretariat for the Enabling Masterplan.


I read the information on CEL’s website, but was disappointed to discover that other than the Mental Capacity Act, there appears to be no provision whatsoever for proper structural support for persons suffering from mental illness and their caregivers.


Mental illness, like a physical illness, can be disabling. Person with mental illness are just as entitled to support as persons with a serious physical illness. This is what is required for an inclusive society.


When I wrote to CEL two weeks ago, it seemed that no one there wanted to give me an answer. I also raised this issue with the Acting-Minister for Community Development, Youth and Sports. As expected, no answer was given.


I then called up CEL’s operations manager, and he told me that my request has to be cleared with the bosses “up there”.


In his first speech in the new Parliament, the Prime Minister assured all Singaporeans that no one will be left behind. The Government has also pledged to be more open and to engage Singaporeans. Yet it is so difficult to get answers and support for the mentally and their caregivers. Why?


It is little wonder then that Singaporeans are airing their hardships, frustrations and problems on the internet, because they feel their voices are not being heard. Under the PS21 Programme (Public Service 21), government agencies are supposed to reply to within 3-5 working days. I don’t see this happening.


The Government has to understand that people who are seriously ill are frustrated and distressed, and feel hopeless. This unhappiness often spills over to their caregivers as well.


I would therefore like to know if there are plans to provide a good structural support system for caregivers of the mentally ill and their afflicted loved ones, in the Enabling Masterplan for 2012-2016.


A secondary question: will psychiatric patients and their caregivers be represented on the three sub-commitees under the Enabling Masterplan? And if so, who would represent us?


Hearing from people who have walked this road and embarked on this journey will enable the Government to fully understand the struggles and growing needs faced by the mentally ill and their families, in their lonely and isolated lives. It seems that persons with physical disabilities are represented on the Enabling Masterplan sub-committees, but I have not heard of anyone representing psychiatric patients and their caregivers.


Singapore can only become an inclusive society if it looks after ALL sectors of the population.


Raymond Anthony Fernando


Sunday, October 23, 2011

Coping with chronic illness in a marriage - By Raymond Anthony Fernando




Beginning today, treat everyone you meet as if they were
going to be dead by midnight. Extend to them all the care,
kindness, and understanding you can muster, and do it
with no thought of any reward. Your life will never be
the same again.”
- Og Mandino -
I read with much interest Prof Lee Wei Ling's article, “Living a life with no regrets” Sunday Times Oct 23, 2011). It was a heart-warming article and I'm touched by her love and care for her 88-year-old dad whose energy level has been lowered because of age . 

If we show love and compassion for a loved one who is not in the pink of health, God will bless us - in more ways than one.
Chronic illnesses can also see couples fall apart when a spouse who could be the primary caregiver, can no longer carry the responsibility of caring for his stricken loved one. Besides the illness taking a toll on the caregiver, there are also money problems such as mounting medical bills, loss of key social support that can contribute to lower marital satisfaction. The caregiver must not only slog to bring home the bacon, he must also do all the errands, the housework and whatever is necessary to care for his/her spouse. I am in this predicament, but I live with no regrets .
Caregiving for the chronically ill is an enormous burden and often both partners, isolated from the world, take out their frustrations on one another. And when they can no longer deal with this extremely difficult situation, divorce seems the only solution.
It takes a great person to provide love and support when a spouse develops a chronic illness. A friend once told me that “it takes a greater person to marry a woman who is already struggling with a chronic illness. More so, when they have a serious mental disorder such as schizophrenia- described to be one of the most devastating and disabling of all mental disorders.” I am uplifted by what this friend, David told me.
How many of us will marry someone who has a psychiatric condition? Especially when mental illness carries a nagging stigma. I have done that, and I have no regrets whatsoever because, my wife Doris is a “beautiful” human being. A very giving person. When I was courting Doris in the 70s', I saw how her domineering second sister would shout and scold her for the slightest thing. As a result of which, Doris became very fearful, timid and inward looking. I knew that I had to take her out of this unhealthy environment because it would not help in her condition. 

I also knew that it would not be an easy journey to care for her. Family members will run way, friends will disappear and you are left all by yourself to carry on this lonely and arduous journey. That's the reality because many in our society are still not ready to accept people with mental illness.

Dr Chua Hong Choon , CEO of IMH in his welcome address at IMH's World Mental Health Day 2011 celebrations mentioned how he was displeased with the unkind remarks some people (who sat next to his table in a restaurant) passed about the mentally ill.  I know that this is very common because I have myself heard such hurtful and unkind comments about the mentally ill.  But we must understand that no one chooses to have this brain disease.
One of Dr Chua's staff, an executive who has a lot of passion about her job also told me that when she passed some IMH postcards to some people at a Community Centre (CC), they felt awkward, with a few even sneering at her. I can understand this only too well. Because when I offered to give motivational talks on mental illness at CCs so that grassroots leaders can be trained on how to manage the illness, not a single one responded to my call to share my wealth of experience in helping my wife cope with schizophrenia. Coping so well that she is today an author of 6 books.
People who do not understand mental illness tend to be biased towards the sufferers. Hence public education on mental illness must be on-going. Once we are able to educate the public that mental illness is indeed treatable, perceptions can be changed. But it is going to be a long haul.
This is where the media can play an important and crucial role. Success stories on how those people coping with chronic illnesses have beaten the odds and overcome huge adversities need to highlighted.
It is so much easier to cope with chronic illnesses if you have money to pay for services such as a full-time nurse or maid, but it becomes much more difficult if you are hard on cash. Although Doris is coping well with schizophrenia, her arthritis condition that has troubled her for more than 8 years, often leaves her in severe pain and misery. She is also struggling with other chronic illnesses that includes diabetes, high cholesterol and incontinence.

I am deeply grateful to my wife because she has been instrumental in my advocating for the mentally ill and their caregivers and because I have done this, God has blessed me with a variety of 2nd careers- from writing 12 books, song writing, training, freelance TV acting, motivational speaking and even counselling those who are in distress.
Given that caregivers are facing huge challenges in taking care of their stricken ones, I would like to suggest that the Government considers setting up a Caregiver's Union which could look into providing better support measures and welfare for patients and their caregivers. Mental illness is creeping into churches, offices, homes , schools and into our homes, so let us take steps to ensure that we can manage mental illness before it manages us.
I hope Prof Lee Wei Ling who writes every fortnight to the Sunday Times will also talk about the common citizen who have had the courage and conviction to care for their loved ones coping with serious illnesses and suffering. Thank you.
Sincerely,

Raymond Anthony Fernando
Model Caregiver 2007 & Mental Health Champion 2010



Friday, October 14, 2011

DJ makes amends after remarks on mentally ill - Class 95FM: Please adopt IMH as charity

Raymond Anthony Fernando's letter on the above matter is published today in The New Paper, Friday 14th October 2011, page 23.

I refer to the report, “Glenn Ong offers to help IMH (The New Paper, Oct 11).

I am heartened that radio DJ Glenn Ong has offered to volunteer his time to help the cause of the mentally ill.
It is the right move and I urge IMH to accept Mr Ong's offer graciously
.
We all make mistakes, and I'm glad that the DJ is making amends weeks after his comments about the mentally ill that drew a flurry of criticism from psychiatric patients and their families - myself included.
To improve on the image of Class 95FM, I urge the management of Mediacorp Radio to show its support for the mentally ill and their families by adopting IMH as its next charity.
 
By doing so, Class 95FM will not only be providing the crucial financial support for this marginalised community, but also help to reduce the stigma that has plagued the mentally ill for decades.

RAYMOND ANTHONY FERNANDO