Taken from: The Electric Newpaper
http://newpaper.asia1.com.sg/news/story/0,4136,101940,00.html?NEVER LET ME GO TRUE LOVE #1
AH POH, TILL DEATH DO US PART No flowers, no chocolates. But every day is Valentine's Day for this man who gave up his job to care for his wife in hospital day and night By Maureen Koh
February 13, 2006
ON Tuesday, Mr Roland Lee will spend Valentine's Day in Ward 43 of the National University Hospital.
The clinical six-bed ward is devoid of any Valentine's Day frills like heart-shaped cards, expensive chocolates or flowers.
There, he will celebrate the true meaning of love, devotion and sacrifice - just as he has done almost every waking moment of the past three years.
He will, as usual, cut a lone figure in the corner of the B2-class ward, a familiar face who has made that corner his home away from home.
He has hardly ever left that corner. When he does, it is to run quick, urgent errands.
He has quit his job as a security manager. He has quit a normal lifestyle.
He is intent on giving his all to the woman he watches over, day and night.
She is Madam Soh Hong Kiaw, or Ah Poh, as Mr Lee calls his wife of more than 16 years.
Ah Poh is 52, frail and bed-ridden.
In the hospital bed, her fragile frame is shrivelled.
She is suffering from a rare medical condition known as Melas (mitochondrial encephalopathy, lactic acidosis, stroke) syndrome, which has caused her to be bedridden with stroke-like symptoms.
There are only five such known cases in Singapore, and she is one of two patients at NUH with the illness. (See report on page 4).
Roland knows almost as much about her illness as doctors.
He provided us with a stack of A4-sized printouts of research information he has culled from the Internet and books.
'This will help you understand the disease better.'
The 54-year-old could rattle off names of the medication, its uses, even statistics and relevant details.
Ah Poh, who turns 53 in exactly two weeks, suffered her first seizure in November 2002.
There were no warning signs.
Roland recalled: 'She was just like anyone of us before it happened.
'The illness was so rare with hardly any symptoms.
'Blood tests did not reflect any sign of diabetes, hypertension or high cholesterol.
'By the time a CT scan was ordered for Ah Poh, it was too late.'
A scan later revealed a block in her lower left side of her brain.
She subsequently slipped into a coma that lasted for 48 days.
When she recovered, Ah Poh was only half physically able.
And she had lost 30 per cent of her mental capacity.
Today, her life is a routine of shuttling between the hospital and their home.
She had been in hospital for as long as 82 days in 2003.
This time, as of today, she's been warded for 15 days.
And he would be there, by her side, every step of the way...
NEVER GETS IRRITATED
SHE calls out occasionally to him, rattling off words that are barely intelligible to anyone. He responds tenderly in Hokkien: 'Ho, ho... will tell the nurse, will call the doctor.'
At times, she grumbles incoherently. But he takes it in his stride and continues to massage her hand soothingly, smiling indulgently at his wife: 'Ok, ok... I know, I know...'
This goes on many times in the four hours that The New Paper on Sunday spent with Roland.
Not once did he show any irritation. Instead he laughs and tries to explain to us that it is Ah Poh's way of getting his attention.
'Ah Poh is just scolding me. She always complains, lao de hen hui jiang hua (the old one is very talkative in Mandarin).
'She's annoyed that I'm talking too much and in doing so, I'm 'neglecting' her,' he said in English.
Roland, who worked as a security manager at the Woodlands Regional Library when Ah Poh first fell sick, would take the first MRT train from his 3-room HDB flat in Bukit Batok to the hospital at 6.15 every morning.
He would chat with his wife and share his schedule for the day while giving her gentle massages until about 10.30am.
He would then head to work till 9pm, when he'd make his way back to the hospital and accompany her until 11pm before heading home.
Roland said: 'Ah Poh used to ask me, lao gong (meaning husband), why are you so good to me?
'I told her, simply because I'm her husband. I took the vows we had exchanged seriously - that we would love and cherish each other, in health and in sickness, till death do us part.'
SHE SAVED HIM FROM DESPAIR
AH Poh was a friend of Roland's younger sister.
She came into his life when he was at his lowest point.
'My girlfriend of seven years had just broken off with me, after another unsuccessful attempt to register our marriage (because of immigration problems).'
He was then dabbling in some trading business.
Roland turned to drinking.
He was on an emotional roller coaster - until he met Ah Poh at his sister's home, where they had arranged to play mahjong.
That was in 1988.
Dates were fuss-free, said Roland. 'We'd meet for mahjong games at first.
'When I was gradually drawn to her cheerfulness, we started to go on movie dates.
'One of the dearest qualities about Ah Poh was, she never demanded to be pampered.
'She had a big heart - she was filled with compassion.
'And everything she did, she had her siblings in her mind and heart.'
'I knew she was the woman I wanted to spend the rest of my life with.'
In November 1989, the couple registered their marriage.
They could not have any children because Ah Poh had gone through several operations for incontinence which, they finally realised, was the first hint of the Melas syndrome.
Continued on next page
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HE QUITS JOB AFTER WIFE'S TRAGEDY
LIFE after marriage had been simple but blissful.
Mr Roland Lee tried to provide the best for his wife Ah Poh and, knowing that she loved to travel, he scrimped and saved.
They've been to the Gold Coast in Australia and Yunnan, China.
But that was before the Melas syndrome struck in 2002.
'Yet I did not give up. I was confident. I prayed that Ah Poh would recover one day,' he said.
A near-tragedy in March 2003 jolted Roland into making another sacrifice: He quit his job as a security manager, which he had held for two years, to devote himself to caring for his wife.
'Melas syndrome causes a patient to feel disoriented. And so, even when Ah Poh is lying in bed, she'd think she was being turned upside down.
'Then she would struggle to put herself into the right position.'
To prevent her tossing and risking a nasty fall, hospital staff decided to tie her to the bed. Roland was anguished by this, even though he knew it was necessary.
Tears welled up as he recalled: 'I felt her pain and I was so frustrated that I could do nothing to ease her.'
He had a rude shock one morning when he reached the hospital.
'I found her entangled in all the strings; they were almost strangling her. Because she had lost so much weight, her head was caught between the railings.'
It was then that he made up his mind to be by her side every waking moment:
'Only I could give her the full attention she needed. I decided to quit my job and devote myself whole-
heartedly to caring for Ah Poh.'
It was difficult. 'I did not have any help. Everything was a learning curve. There were times when I felt so desperate that I felt like banging my head against the wall.'
'I had to repeatedly remind myself that I could not collapse because Ah Poh needed me - more than I needed anyone.' He sleeps about two to three hours at most a night.
He hardly leaves Ah Poh's bedside, even when she is in the hospital. A blue foldable PVC bed sits by the side table in the ward. Buddhist sutras play from a portable radio on the table.
Roland said firmly: 'I will not give up. I'm not ready to succumb to this battle.'
The scene repeats itself even when Ah Poh is allowed to return home. Daily meals for him consist of a kopi-o kosong (black coffee without sugar) for breakfast, followed by a packet of rice to last him for lunch and dinner. On days when Ah Poh is well enough to be home, he would cook simple dishes.
'When I have to see the doctor, or if there are really any urgent errands to run, my younger sister takes over for a couple of hours,' said Roland, who has been a Type 2 diabetic for 15 years, and relies on medication to control his condition.
His only past-time, he said matter-of-factly, is taking care of Ah Poh and chanting Buddhist sutras.
Top of his list of worries is the financial bind that they are in now.
NO MORE SAVINGS
Their savings have dried up.
He has lost count of how much he's paid for his wife's medical bills. She doesn't have insurance cover.
One prolonged hospital stay came up to over $23,000, but the bill, which was reduced to $4,000 after subsidies, was paid for by Medisave and Medishield.
'My wife's Medisave is down to slightly above $800 and mine is exactly $666.30 left,' he said.
He admitted that he was initially frustrated by the seeming lack of assistance from Ah Poh's other nine siblings.
'Yes, there was some bitterness in the beginning - I'd be lying if I said otherwise - but that's all buried now.
'I want my wife's final journey to be an easy one... I don't want her to feel that she's been a burden to me.'
A nurse had once asked Roland: 'What if you meet someone now who is drawn to your devotion and is willing to look after your wife, and be with you?
'Would you accept her?'
His reply? 'No one can predict the future but the answer is 'no' right now. I just want to devote my full attention and love on my wife.
'Ah Poh is all that matters to me at this point.'
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Malnourished as she can't retain food
PATIENTS with Melas develop brain dysfunction with seizures and headaches, as well as muscle disease with a build-up of lactic acid in the blood, temporary local paralysis and abnormal thinking.
In Ah Poh's case, the main complications she has suffered recently are related to her inability to retain food, causing malnutrition.
'This has included extreme weight loss, skin and chest infections,' said Dr Philip Iau, a consultant in NUH's Department of Surgery.
It has also resulted in neurological deterioration, fits, and tremors.
Ah Poh needs intravenous nutritional support as she cannot eat.
There is no known treatment for Melas syndrome which is progressive and fatal.
A witness to Roland's devotion is nurse manager Ms V Bathmavathi, who first got to know the couple in January last year, when she was posted to Ward 43.
She said: 'He never once sighs or gets tired in giving continuous love and care to his beloved wife.'
