March 26, 2009
Mum, where have you gone?
A son describes the heartrending moments as his mother lapses deeper into Alzheimer's disease. JUNE CHEONG reports
There were times when management consultant Wong Chai Kee was afraid to visit his ailing but fiercely independent mother at her flat in MacPherson estate.
Mr Wong, 56, by most counts a filial son, would take his mother, Madam Lee Chye Yuen, out for meals thrice a week and would often pray beside her.
However, her battle with Alzheimer's disease took its toll on him too.
Diagnosed with it in 2004, she died two years later at the age of 93. He said: 'When her episodes were horrible, I dared not visit her.
'I remember one day, before visiting her, I had to first calm myself for an hour in the car.'
Despite her heartbreaking lapses into incoherence, he believes his late mother's condition was a blessing in disguise, for he ended up writing a book, Even When She Forgot My Name, describing his experience caring for her.
The book was launched yesterday at the 24th Conference of Alzheimer's Disease International at Suntec Singapore. The event ends on Saturday.
Alzheimer's disease is a progressive and fatal brain disease that slowly destroys memory and thinking skills and, eventually, one's ability to carry out daily activities. It has no cure.
Mr Wong, who is married to a junior college chemistry teacher and has one son, said: 'The book is a celebration of Alzheimer's disease. There were more positives than negatives in my mother's case.
'It brought the family together.'
There are eight siblings in the Wong family. Mr Wong's father died in 1989 at the age of 84 from a stroke.
Although Madam Lee was officially diagnosed with Alzheimer's in 2004, there were already signs of it in 2001.
Between 2001 and 2004, she went from walking with the aid of a cane to sitting in a wheelchair, and was finally bedridden. She also lost interest in cooking and sorting out her bills - trademarks of her independence.
Mr Wong said: 'On one visit in 2001, she smiled at me like I was a stranger.
'She sat me down formally and we chatted idly for half an hour. Suddenly she said 'You're my son'. Back then, I wanted to deny the reality of her condition.'
Three months after Madam Lee's diagnosis, Mr Wong's brother, Bert, 55, who lives in New Zealand, returned to Singapore for three weeks to help care for her.
During Bert's stay, Madam Lee's condition took a turn for the worse.
Mr Wong said: 'After dinner, she'd want to sit up but she just kept sliding down her chair. For hours, she'd rock her body and call for help.
'That was when the reality of the diagnosis sank in.'
He enrolled her in day care but that arrangement did not last long as she complained of boredom with the floral arrangement classes and the 1950s music piped over the sound system.
He said: 'My good intentions caused her suffering.
'She showed irritation, frustration, extreme reluctance and resistance whenever I tried persuading her to go for further sessions.
'I saw her unhappiness myself when I spent a morning with her at the centre. She smiled brightly whenever the centre's staff passed by but her smile faded the moment the staff went away.'
In the end, Madam Lee's family agreed that she would be unhappy if moved to a nursing home as she treasured her independence. Her live-in maid Karma became her full-time caregiver.
Mr Wong said: 'I learnt that when you deal with Alzheimer's patients, you must keep trying various options. Every Alzheimer's patient is different.'
In June 2004, Mr Wong's sister, See Fah, 72, who lives in China, visited Singapore for a month to help care for their mother. It was a heartrending experience.
Madam Lee neither registered her daughter's presence nor recognised her throughout the month.
Mr Wong said: 'When my sister left, she tried to say goodbye to our mother but there was no goodbye because there was no hello to begin with.'
He added: 'It was eerily scary whenever my mother was catatonic. She'd look through me almost like she was dead.'
Comparing his mother's struggle with Alzheimer's disease to a roller-coaster ride, he said: 'My moods were pulled and pushed around like a plaything. When my mother was in a good state, I'd fear it would not last.
'When she was in a bad state, I'd fear it would get worse.'
She see-sawed between uncontrollable bouts of confused wailing and quiet moments of lucidity.
Once, Mr Wong quizzed her on his name. She reprimanded him: 'I'm your mother. You're my son. Isn't that enough?'
Later, she softened and said: 'Your name is in my heart. That's the most important thing. Other things don't matter.'
He recalled: 'Those words went straight to my heart. That was the re-emergence of my mother.'
He relied on his Christian faith to help him cope with her physical and mental deterioration, often leading her in prayers together.
Asked what he missed most about his mother before the disease struck, he said: 'I miss the banter. We would talk politics; watching television was never a silent affair.'
As her disease progressed, she became a woman of few words.
In October 2004, she told him while they waited outside the doctor's office for her regular check-up that her mind was in chaos and she felt she was going mad.
That was when he practically begged the doctor to give her something to halt the progress of the disease.
The doctor prescribed Reminyl, a drug which treats symptoms of mild to moderate Alzheimer's disease and is believed to improve the patient's cognitive function and ability to perform daily activities.
The drug, which cost between $400 and $500 for three months' supply, worked for Madam Lee and she regained her cheery, chatty self.
She also got her wish to see her family all together one last time.
A month before she died on Jan 31, 2006, all eight siblings gathered at her flat to celebrate Chinese New Year.
Mr Wong said: 'My mother recognised See Fah this time. She could even sit up in her wheelchair and clink glasses with us all.'
Even When She Forgot My Name is available at leading bookstores at $15.80 (without GST).
Your name is in my heart. That's the most important thing. Other things don't matter.
Madam Lee, when Mr Wong quizzed her on his name on one occasion