32-year-old Singaporean with ALS dies 8 years after diagnosis; parents converted bedroom into ICU to care for her

ASIA ONE NEWS

APRIL 03, 2022

PUBLISHED AT 12:40 PM

By CANDICE CAI

32-year-old Singaporean with ALS dies 8 years after diagnosis; parents converted bedroom into 'ICU' to care for her

At the age of 24, Carolyn Chan felt unwell, developed muscle weakness and had difficulty swallowing and talking. She lost 15kg within a year, and was later diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS.

Carolyn Chan

Carolyn Chan loved animals when she was alive 

Within a year of her diagnosis, she was paralysed. But with dedicated round-the-clock care by her parents, who even converted their room at home into a makeshift 'intensive care unit' (ICU), they got to spend another eight years with their daughter.

According to ALS.org, the average life expectancy of a person suffering from the disease ranges from two to five years. Chan was 32 years old when she died peacefully at home on March 16 this year.

Speaking to Shin Min Daily News, Chan's mother Ginette Kwek, a housewife, described the family's devastation when they first learned about their daughter's diagnosis.

Chan was working as a social worker in Canada at the time after graduating from high school and university there. 

After the diagnosis, Kwek flew to Canada for three months to be with her daughter. They consulted more doctors back in Singapore when they returned but still faced with the sobering reality of the incurable condition.

Despite the devastating prognosis, Kwek said Chan remained optimistic and co-operated on treatment plans. "She never once complained," said Kwek.

While Chan could still take care of herself initially, she gradually lost the ability to breathe and eat on her own and became bedridden.

Not wanting their daughter to spend the rest of her life in a hospital, Kwek and her husband decided to care for her at home.

The couple converted their bedroom into a makeshift ICU and bought equipment such as a ventilator, oxygen concentrator and a hospital bed, so that they could be beside her as she slept.

The couple live with their two other daughters at home and also rely on a live-in helper to help care for Chan, as she required attention every 15 minutes.

As Chan's mental capacities remained intact, the family would bring her out for a movie or to enjoy the outdoors whenever her physical condition allowed.

An outdoor trip 

Before every trip out however, they would have to make sure to bring the necessary medical equipment. Chan would also have to be lifted out of her bed by a hoist while being assisted by three others.

Moving Carolyn from her bed to the wheelchair 

Chan's condition gradually deteriorated over the years and she died peacefully at home last month.

Kwek described how even though Chan could not speak or raise her hand, she could still communicate through electronic devices. Through this method, she was able to wish them goodnight and say "I love you".

But in the later stages when her eye muscles degenerated and there were times she could not even open her eyelids, Chan had to rely on moving her eyeballs left and right to signal her intention. This continued for several years.

"Seeing our daughter suffer was painful, but we had to be strong and not give up hope," Kwek shared, adding that Chan was "not able to talk or express her pain".

"We would only realise she was uncomfortable when she teared up. It upset us to see that, but if we were to show our sadness she would be upset too, so we had to remain strong and take care of her to the best of our ability."

Kwek hopes to raise people's awareness of the debilitating condition by sharing her daughter's story, and that it would inspire others not to lose hope.

She shared that if expectations are well-managed and adequate assistance is provided, prolonging the lives of ALS patients is possible.

"The disease has no effect on patients' cognitive and sensory abilities, so they may experience persistent discomfort from the pain and itch. They can also feel a sense of guilt towards their caregivers or for the financial liabilities their condition brings and be depressed or distressed," said Kwek.

"My daughter was always optimistic despite her condition. We were all by her side when she passed and she went peacefully. I believe she is in another wonderful place now," Kwek told the Chinese evening daily.

candicecai@asiaone.com

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Notes:

Carolyn Chan great great grandfather were Neo Pee Wan and Khoo Teng Hin, Goh Choon Tye, all of whom are buried in Bukit Brown

Together in life, together in death - the tomb of Mr and Mrs Tay Geok Teat

In Bukit Brown,  there lies a family cluster of tombs transferred from Alexandra Road.

If one is to take a closer look at the tomb,  there is no distinguishing feature of the husband and wife behind one of the tombs.

Few would realize that underneath the tomb lies one of the foremost merchant before the turn of the 19th century, importers of European goods of every description...

here is the story of one of the many tombs in Bukit Brown, waiting to be discovered:

From Song Ong Siang "One Hundred Years' History of the Chinese in Singapore"



Tay Geok Teat was born in Malacca in 1832, being the son of  Tay Song Quee, a native of Cheangchew, China, who emigrated to the Straits and settle down as a trader in Malacca in the early part of last century. Mr Geok Teat came to Singapore when he was quite a boy. He was for a brief period a member of the Municipal Commission.  In 1871 he took his  son Tay Kim Tee into his business, and on his death on the 21 Apr 1893 Mr Kim Tee continued to run the firm of Geok  Teat and Co with much success until 1906 ......

The Late Mr Geok Teat  was a well known and widely respected resident in Singapore, having been connected with the place during the greater portion of his career.

Born in Malacca about sixty years ago, in 1868, he commenced business as a shopkeeper on his own account.  And he gradually rose by his own exertions until he had attained his present position.  Being of a retiring disposition he shunned publicity, and at no time took a very active part in public business. 

He was a member of the Municipal Commission for some time, resigning only on account of the death of his wife which he appears to have felt deeply as he is said never to

have been the same man since. 

He left behind him an only son and partner in his business, Mr Tay Kim Tee. The godown in

Battery Road was closed during the day

--Singapore Free Press and Mercantile Advertiser 21, Apr 1893, pg 2 - The Late Mr Geok Teat

A plan of Geok Teat & Co in Raffles Place

Pic from PICAS.  I believe the godown of Geok Teat & Co is among the row of buildings here

Tay Geok Teat owned properties 78, 79, 80 Amoy Street, 41 Havelock Road, 2 Pearl Hill Road, 15 Pasir Panjang Rd etc

He was also a contractor for Pulau Ubin granite

In 1863, Chia Ann Siang was his partner in his firm Geok Teat & Co

His firm as advertised in those day "Importers of every description of

European goods"

In 1883, Lee Cheng Yan toured Europe with Tay Geok Teat,

paying special attention to the manufacturing towns in England. The local press billed the two businessmen as the first Straits-born Chinese to visit Britain for commercial purposes.

According to Brenda Yeoh, in 1892, Tay Geok Teat, applied for permission from the Municipal Board to make 2 graves, one for his recently deceased wife, and one for himself, on a piece of land in Telok Blangah where nine family graves were already sited (MPMCOM, 26 Oct 1892)

His wife Madam Khoo has died in Oct 1892.  He died six months later on 21st Apr 1983 at the age of 60

He was laid to rest on his family burial ground on 10 Jun 1893. 

A Chinese band

"The performers attended by permission of Mr Tay Kim Tee, and were his children who with some others composed " the family drum and fife band" of the late Mr Tay Geok Teat. The eldest performer (clarionet player) is 14 years of age, and the youngest is 7 years of age.  To the eldest, falls the duty of transcribing the piano music to the band scores.

The members of the band were taught and trained by Mr Tay Geok Teat, and certainly their performances yesterday did great credit to that deceased gentleman's tuition.  The performers kept very good time, and the way the drummer handled his instrument would have gladdened the hearts of some admirers of that instrument in the Philharmonic Society...

extracted from ST, 8 Feb 1894, pg 3 A Chinese Band

Origin of historical boundary marker found near Adam Drive puzzles researchers

Origin of historical boundary marker found near Adam Drive puzzles researchers

Heritage enthusiasts (from left) Soh Ah Beng, Raymond Goh and Peter Pak pose with the Gim Bee marker in Adam Drive. ST PHOTO: ARIFFIN JAMAR

SINGAPORE - A historical boundary marker found near Adam Drive could shed light on the area's history prior to World War II, when it was part of the British Sime Road Camp.

It was discovered last August by Mr Raymond Goh, 58, a pharmacist, along with Mr Peter Pak, 49, an IT project manager, and Mr Soh Ah Beng, 58, a cemetery caretaker.

The marker resembles two that were extracted by the National Heritage Board (NHB) from Dover Forest last October.

Mr Goh, along with his brother Charles, 54, a safety officer, are well known in the heritage community as tomb hunters.

Mr Raymond Goh told The Straits Times he had stumbled upon the marker last year while exploring the area with his friends.

The rectangular marker is about 17cm wide and about 11cm thick. Its exposed surfaces are about 42cm high. On two sides, the marker bears the Chinese characters "Jin Mei Jie", indicating that it was used to demarcate the boundary of land relating to an entity named "Jin Mei", or "Gim Bee" in Hokkien.

However, identifying the marker's original owner has thus far proven to be a challenge for the Goh brothers, who purchased historical documents from the Singapore Land Authority (SLA) to dig deeper into the history of the land surrounding the marker.

To deduce the marker's original owner, the brothers have attempted to eliminate possibilities.

Based on their research, the marker lies between two plots of land, of which one, spanning about 14ha, was bought by Chinese merchant Lim Leack from the East India Company in 1858.

The Goh brothers had known about Lim's ownership of the land around Adam Drive and Sime Road prior to stumbling upon the marker. They had researched the area after they were approached by Mr Lim Soon Hoe - a sixth-generation descendant of the merchant - to identify a land plot mentioned in a legal document dated 1935.

Mr Lim, 62, retrieved this document in 2012 from the National Archives of Singapore while researching his family's history.

The other plot was bought by three persons from the Ong clan in 1872 from Wee Hee, a Chinese businessman.

A decade later in 1882, the British government introduced the Landmarks Ordinance, requiring landowners to install boundary markers to demarcate the extent of their land.

Mr Raymond Goh said the Ong clan's land, which was eventually used as a cemetery, was known as Seh Ong cemetery or Tai Yuan Shan to the Chinese.

Graves belonging to ancestors of the Ong clan still lie on this site, including on land in Adam Drive near the Gim Bee marker.

The boundary marker was discovered in August 2021 by Mr Raymond Goh, Mr Peter Pak and Mr Soh Ah Beng. ST PHOTO: ARIFFIN JAMAR

Mr Goh said it is unlikely that the Gim Bee marker could have belonged to the Ong clan, given that the term "Gim Bee" does not in any way resemble the Seh Ong cemetery's name.

Map research consultant Mok Ly Yng, 54, who was commissioned by NHB to research the history of the two Dover Forest markers, said another boundary marker bearing the "Tai Yuan" name was found previously, indicating that would have been the name engraved on Tai Yuan Shan's boundary markers, and not "Gim Bee".

Mr Mok, who purchased documents from SLA to look into the Adam Drive area's history, said it is likely that the Gim Bee marker was erected by someone who was in charge of Lim Leack's land after his death in 1875, which came before installing boundary markers was made compulsory by law.

The Goh brothers' research shows that Lim Leack's land was under the charge of several sets of trustees before it was sold to a rubber company in the mid-1930s by its trustees then - Lim Hong Siang, a great-grandson of Lim Leack, and two others.

Lim Hong Siang had been a trustee of the land from as early as 1906, while the other two were appointed trustees only from 1934.

Although boundary markers were made compulsory in the 1880s, Mr Mok said it was only from 1909 that the practice of erecting them was taken seriously, after a proper survey of Singapore's land was undertaken by the colonial government between 1902 and 1909.

Thus, he suspects that the marker could be associated with Lim Hong Siang, given the timing of his trusteeship, although research has so far not found evidence to prove this.

Mr Mok added that it is highly unlikely the Gim Bee marker is a sham, as its present geographical coordinates, recorded by the Goh brothers, correspond with land boundaries recorded in official survey maps from as early as 1935.

Shortly before the land was sold in the 1930s, the remains of Lim Leack's wife Yeo Im Neo and his eldest son Lim Teck Ghee - who were buried within Lim Leack's original land lot - were re-interred in Bukit Brown Cemetery in 1935.

Lim Leack's former land plot is today owned by the state and houses a cluster of bungalows. The area, including the forested parts where the Gim Bee marker stands, is zoned for residential use, subject to detailed planning.

The Goh brothers, who have stumbled upon about a dozen boundary markers over the past two decades, hope NHB will lend its research expertise to uncover the marker's ownership, but not remove it like it did with the Dover Forest markers.

Mr Raymond Goh said keeping the marker on-site is more meaningful than removing it from its context, especially as it is likely to still mark the limits of a present-day land lot based on its geographical coordinates.

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Notes

The 36 acre land was repurchased by Tan Hoon Chiang in 1906 and given in trust to the great grandsons of Lim Leack (Lim Liak). Tan Hoon Chiang was a business partner of the deceased Lim Liak (of which Lim Liak street was named after). The said land was to be used as a burial ground for the male descendants in the male line of the said Lim leack, until 21 years after the last known trustees have passed, upon which the trustees can sell and dispose of the said piece of land and to divide the net proceeds thereof among the grandsons and more remote male issue .

Given that Lim Leack and descandants came from Gim Lee, it is possible that the Gim Bee is a beautification of the Lee, an not uncommon practice in the past to beautify village names. That is 錦美界 Gim Bee Boundary demarcate the start of the burial land for Lim Liak family members, who hailed from the village of 錦里 Gim Lee