Life of a caregiver: Husband, 2 children all struck with devastating illnesses

SINGAPORE - What is it like to be the mother of a sick child?  The New Paper speaks to a mother of three, two of whom have life-long illnesses, to find out about the challenges of a caregiver.

They seem like any ordinary family you'd find in the heartland of Singapore. They live in a modestly furnished four-room HDB flat in Tampines, which Mrs Lim Chaun Song, a housewife, keeps spick and span.

But walk into the kitchen and you see plastic bags carrying the logos of different hospitals placed neatly on the kitchen cabinet. They are full of medicine.

Like the young mother in the West Coast case, Mrs Lim, who turned 50 recently, has had to deal with the stresses of being a caregiver.

Her youngest child, Stella, 13, suffers from biliary atresia, a rare chronic liver disease. She was born without ducts that drain the bile from the liver.

In 2008, Mrs Lim's second daughter, Jessie, who was in Primary 5, returned home after a routine school health check-up with bad news.

Jessie, now 16, was diagnosed as suffering from idiopathic scoliosis, which meant her spine was bent sideways. While this is not life-threatening, she had to wear a back brace to straighten her curved spine for 18 hours a day.

Mrs Lim says: "But thankfully, she could remove the brace last year since her condition has improved."

Her eldest child, Derick, 18, was diagnosed in 2011 with ankylosing spondylitis, an arthritic condition that affects the joints of the spine, causing inflammation, severe pain and stiffness in the back.

As the condition progresses, the inflammation of the spinal joints may cause the entire spine to fuse together, causing severe immobility and deformity.

Her husband, 51, who works as a packer-cum-delivery man for a pork seller, has had kidney failure since 2007.

"He had to start kidney dialysis right away, three times a week," says the petite, bespectacled woman softly.

Struggle to come to terms 

Struggle to come to terms

Mrs Lim can rattle off the medications that each family member needs, their medical appointments and explain the complexities of their conditions.

Ask her if she feels that life has been cruel to her and she does not evade the question or break down.

Yet, you can hear the pain and sadness in her voice, and you can detect a sense of frustration from how the odds seem constantly stacked against her.

“Sometimes, I ask myself why God is not fair to me. Why did He give me a family of sickness? I am just one person and I have to take care of so many people."

“I’ve blamed God before, but I also know I cannot do anything. Since He wants to give me this, I just have to accept it and try to overcome,” she says.

She struggled with coming to terms with the situation in the beginning, she admits.

“I could be washing clothes in the toilet or in the shower, and I’d just cry and cry soundlessly because I didn’t want to worry the others.”

It started in December 1999, right after Stella was born. Within days, she and her husband noticed that something was very wrong.

Stella wasn’t shaking off her jaundice. Her skin colour was like “charcoal”.

“Her poo was pale and the colour of tea, but because we had not encountered something like that, we were not aware how bad it was,” Mrs Lim says.

 The start of her ordeal

Her ordeal

After several tests, ultrasound scans and later, a biopsy, doctors told her that her daughter had to go for an operation.

When Stella was five weeks old – on the eve of Chinese New Year in 2000 – she went through a major operation in which doctors joined the intestines directly to the liver.

Still, Stella has not been given a clear bill of good health.

A sickly child took a toll on the family.

There were bills to pay.  And two other children to bring up.  Stella was in and out of hospital, sometimes, for weeks at a time.

Desperate for a cure, Mrs Lim tried everything, including changing her child’s name in the belief that it could help change her fate. Then, a temple medium she consulted told Mrs Lim to abandon Stella.

She reaches over and places one hand over her daughter’s.

“But I carried her for nine months. I couldn’t do that. No matter how difficult my life is, I must be the one to bring her up. I am her mother, she is my daughter. There was no way I was going to abandon her just because she is sick,” she says.

So she soldiered on.

Stella does not have a clean bill of health even today. This year alone, she has been in hospital four times.

Soldiering on

Her lowest

Mrs Lim says: “Right now, only one third of her liver is functioning but doctors have told us that a liver transplant is not yet necessary.”

When Derick’s condition became apparent in 2011, it was another blow.

She says it is a life-long condition and he must have medication for the rest of his life.

“But I carried her for nine months. I couldn’t do that. No matter how difficult my life is, I must be the one to bring her up. I am her mother, she is my daughter. There was no way i was going to abandon her just because she is sick.”

The first four years after the operation, things went fine. But in 2004, Stella went “in and out of hospital” and spent just a few weeks that year at home.

That was the year she just started nursery school. “But because she could be in hospital for 10 days to two weeks, she lost out in her education,” says Mrs Lim.

Even though Stella’s condition stabilised for the next few years, it still wasn’t easy because the family could not go anywhere that was too crowded. Then, there were the monthly check-ups that Stella had to go for.

“My other two children were very young then, and I had to take care of them as well.”

But just when the mother thought she could breathe easy, she suffered two blows in 2007.

She is grateful for medical social workers from Club Rainbow, who take time to visit and counsel her. And for her neighbours. At her lowest, she contemplated suicide, she admits.

“It’s so easy for caregivers to get depressed and stressed, or even to wallow in self-pity, but if you start to give up, what is going to happen to the sick person?"

“I’d contemplated suicide but then, how can I give up on my own family? So whenever I’m depressed, I walk over to my neighbours and chat with them.”

Surviving on a household income of just $1,250

Surviving on a household income of just $1,250

Right now, she hopes to find a part-time job to help supplement the family’s monthly household income of $1,250. Her husband is the sole breadwinner.

“It’s also to prepare for an emergency in case my husband’s condition worsens and he can no longer work,” Mrs Lim says.

She is realistic, however, about her chances of getting a job which would allow her to drop anything should Stella develop a fever.

While most children recover, Stella’s condition means the fever could be signalling something more sinister, and often she has to be rushed to hospital.

Yet, it is important to Mrs Lim that there be no pity for her or her family.

For example, just this year, Stella has been in and out of hospital four times.

She says: “It’s very difficult to survive but we try and do manage. I am so thankful that all the medical bills are fully subsidised by the various hospitals.”

Her two younger children get some food coupons in their schools. They are hoping for a bursary to help cope with their son’s polytechnic education.

Mrs Lim, however, chooses to look on the bright side. She says: “Our financial situation is very tight and we are struggling, but luckily, my children don’t have any demands.”

Stella, who has defied all odds, is now in Secondary 2.

It is clear that the young girl knows of the sacrifices her mother has made for her. She says, with tears in her eyes: “I know it has been very tough for my mum. She has gone through so much for me, for this family.”

Understanding her difficulties

Understanding her difficulties

Ask her if she wants anything for herself and the shy young girl replies quietly she does not need anything.

But she has one wish: That she has the means to take her family on a holiday, even if it’s for a one day-one night trip to Malaysia .

The Lims have taken a family holiday only once before – a trip to Bintan that was sponsored by Club Rainbow, which Stella belongs to, many years ago.

They have also never been to a restaurant. Special occasions are celebrated with a visit to the zhi char stall at a neighbourhood coffee shop.

Stella is wishing she can take her mother out on her birthday next week.

She says: “My mother has done so much for me in this short life journey. But I want her to know that her job is not just to take care of us. She must also take care of her own health. I hope she will stay healthy and smile always.”

When Mrs Lim Chaun Song shared the challenges she faces as a caregiver with this newspaper, she did not expect overwhelming kindness and support from readers.

The New Paper on Sunday readers were moved by the story of this woman with extraordinary strength. At least 60 of them have contacted us and many wanted to do something for Mrs Lim.

Some wanted to fulfil Stella's wish to take the family out for a meal at a restaurant.

The frugal family has never eaten at a restaurant. They celebrate special occasions with a visit to the zi char stall at a neighbourhood coffee shop.

Other offers have poured in to help the family in cash and kind.

The readers tell us that they were moved by the extraordinary strength of this caregiver. Mr Arthur Seah, 61, said: "It's really not easy taking care of one sick person, but she has to take care of three."

Help

Others like Madam Bessie Gan, a 42-year-old housewife, offered token sums of encouragement in cash and in vouchers. Madam Gan, said her daughter, 14, had wanted to do something for Stella. Their family put together vouchers from a family restaurant, a supermarket and a bookstore for Mrs Lim's family.

Ms Imelda Lim wrote in to say that she and her husband were "very touched by the strength and perseverance of the mother and wife, Mrs Lim Chaun Song, for keeping the family together. A very tough and strong caregiver, who gives her all and still has to be the pillar of strength for her family."

Reader Pang Boon Tien said: "I cannot imagine the stress and pain she has to go through taking care of her family."

Ms Janice Lim, said that Mrs Lim "touched me greatly and I am sure other readers felt the same way".

A civil servant, who wishes to remain anonymous, said that the "very real and heartwarming" story "shed light on heroism and by my account, Mrs Lim and family are very successful people". He added: "They have more social and spiritual wealth than many people." Two girls volunteered to send part of their savings, while other readers have offered to help send the family on a short family holiday - which they have not been on for a long time.

Mrs Lim and her family were overwhelmed by the initial reaction. They are cautiously working through the options for financial help. She is very humbled by the attention and offers of help.

She says: "We didn't expect this. I just shared my story so that other caregivers would feel encouraged too and not to give up on themselves or their family members.

"I am so very grateful that the readers want to encourage me to go on." Mrs Lim adds: "This proves one other very important thing: Singaporeans are very generous and big-hearted."

maureenk@sph.com.sg

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