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Dedicated caregiver to wife with schizophrenia shares his heart-wrenching journey

schizophrenia

Contributed by RAYMOND ANTHONY FERNANDO – 

Schizophrenia is the most distressing of all mental disorders. Doris had battled schizophrenia for 44 years – 4 years before I married her and 40 years after I took her as my wife.

It is an illness that is often camouflaged and many people who are inexperienced in managing this illness may at first believe that the sufferer showing irritable, moody and suspicious behaviour has a bad personality or is ill behaved.

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Flashback: “With this ring, I thee wed!” Doris and Raymond tied the knot on 26th November 1974

This brain disease first struck Doris at the tender age of 17.  Many people found it very hard to believe that I married her despite her mental illness.  In caring for Doris for four decades, I had grown to love her more and more each day.  I have seen this illness ravage more than half her life and the journey, though very difficult, was very rewarding when I saw her enjoy and live life to the fullest.

Writing Is Healing

Doris’ very first book – a cookbook that has to date sold more than 1,600 copies. The success of this book inspired and motivated Doris to churn out 7 more books.

I always believe that work therapy works for the mentally ill. With my strong emotional support and encouragement, I had managed to motivate Doris into writing not one, but 8 books, three of which are cookbooks because my wife is a pretty good cook.  From cookbooks, she ventured into writing novels and children’s stories.

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Writing can be therapeutic for the mentally ill

Out of the four books that Doris had written, three have attained bestseller status.  This is a remarkable performance for someone who had to grapple with six chronic illnesses. Such achievements are possible if there is strong emotional support from the caregiver, as well as encouragement from the community.

“Never make people with mental illness feel that they are useless or cannot contribute to society, because God has blessed all of us with a gift. It is how we use that gift to bring out the best in ourselves.”

The Throes of Schizophrenia

Doris had been hospitalised in the Institute of Mental Health (IMH) 12 times during our 40 years’ marriage and I had witnessed all her delusions, hallucinations, depression and fears.  Seeing Doris struggling with the “demons in her mind” had been extremely painful for me.

My long hours at work saw her spending many days and nights all alone. The loneliness and the isolation resulted in her missing out on her medications, leading to relapses of schizophrenia.

When Doris was in a stable condition, she is a loving and kind-hearted person.  But during her relapses, I became her emotional punching bag.  I had taken all her emotional outbursts quietly, allowing her to scold, shout and nag at me because I fully understood how this illness tormented her and how it frustrated her.  Over the years, I had learnt to forgive my wife as I fully understood that it is the illness; and not her.  Through my experience in caring for Doris, I had learnt to completely separate the two.

Many people, including our family members do not really understand the specialised care that the mentally ill need or the unremitting emotional wear and tear that caregivers have to endure everyday of their lives.  This illness is terrifying because it is unpredictable.  It requires 24-hour, minute-to-minute care.

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Medication is a must for those with severe mental illnesses

Before she passed on, Doris was consuming 51 tablets a day – half of which was to manage her schizophrenia illness and the rest of the medications were to treat her severe arthritis, diabetes and high cholesterol.

To ensure that the correct dosage/tablets were given, I typed out a list of all her medications on a piece of paper and displayed it in the kitchen cabinet.  In this way, I was able to counter-check the medications to ensure that Doris took the correct dosage.  It is always better to give the medications at fixed hours of the day so that this habit becomes ingrained in both patients and their caregivers.

Caregivers need to observe the symptoms of mental illnesses.  And if they are able to pick up some of the first few warning signs, a relapse can be prevented if the doctors are informed at an early stage.

“In managing a loved one with mental illness, it is important to observe the 3 Ps–Patience, Perseverance and Prayer.”

The Advocacy Trail

I have faced death right smack in the face in 1995 over a failed suicide attempt, but I am glad I survived.  Perhaps my survival gave me the strength to be a “voice” for the thousands out there who are suffering in silence.  Or perhaps, it was a mission that I was fated to undertake.

And having seen the growing number of people, both foreigners and locals lose the will to live, I decided to start lobbying for better support for the mentally ill and their caregivers as far back as 2005.  In fact, it was the birth of my novel, “Loving A Schizophrenic” that spurred me on to write to the media and raise awareness of mental illness and to seek better support for psychiatric patients and their caregivers.

Though advocating for the mentally ill is a seemingly thankless task, somebody has got to speak out for these neglected citizens. Perhaps it is because I have seen how schizophrenia and depression had ravaged my wife’s life that I have this on-going passion to speak up for both psychiatric patients and their caregivers, many of whom are suffering in silence.

Besides writing to the media, I have gone on national television 11 times to create more awareness of schizophrenia and speak of the pain of looking after a loved one struggling with this horrifying illness. On four of these TV programmes, Doris was also brave enough to talk about her battle with this brain disease.

I have been uplifted by the encouragement that I have received from so many people.

And as age catches up on us, one worry kept me wide awake at night:  “Who is going to take care of my wife if I should die before her?”

Most of us feel very uncomfortable to talk about death – just like we feel uncomfortable to talk about mental health issues.  Yet death is something we can never avoid.  A priest once said that life on earth is temporary, but the eternal life where there is joy and full of happiness is in heaven.  Given my wife’s most distressing mental disorder – schizophrenia and her advanced arthritis condition which left her mobility severely impaired, I had often prayed to God that when the time comes, let my wife go first – for the simple reason that she will never be able to take care of herself.

Doris was called to the Lord on Maundy Thursday 17th April 2014 – the eve of Good Friday after she was diagnosed with pneumonia.  I guess in a strange sort of way, God had answered my prayers by bringing her to His Home first.

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Though advocacy work is a seemingly thankless task, somebody has got to speak out for these neglected citizens

Many people, including the journalists from the press and television, staff from the Institute of Mental Health, the other the mental health providers and friends have asked me if I will continue to speak out for the mentally ill and their caregivers now that Doris has passed on. My answer to them is a resounding “YES”!

In fact, my advocacy efforts will now become more intense with Doris’ passing.  For it would be a grave injustice to Doris and all those in her condition if I were to stop now.  It would also be a clear signal that I am defeated.  And I am one person who does not believe in the word, defeat.

As part of my healing from grief, I wrote a book on my wife’s passing entitled, “She Said Goodbye, With A Rose.”   It is my way of paying tribute to the woman whom I had grown to love so deeply and who herself was a staunch advocate for patients with mental illness.  I am happy to report that the book is selling very well.

I accepted the invitation to come on board CLUB  HEAL’s Executive Committee early this year after Dr Radiah Salim – President of CLUB HEAL made the request to me one Sunday afternoon in March 2014.  Doris gave her blessings.  Now that my wife is safe with God, I will devote more time to doing charity work and this includes lending bigger support to CLUB HEAL’s activities and programmes.

 

By Raymond Anthony Fernando – 

Raymond Anthony Fernando is an advocate for the mentally ill. He volunteers with the Singapore Association for Mental Health, Silver Ribbon Singapore, CLUB HEAL and the Institute of Mental Health. He is Model Caregiver 2007 and Mental Health Champion 2010. Raymond attributes his success to his beloved wife, Doris, who has always been his greatest inspiration.

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