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.

Raymond Anthony Fernando
Model Caregiver 2007 & Mental Health Champion 2010

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