A mother struggles to care for ailing son

Eta shows how she takes care of Ronnie.

ETA Ngindang, a jobless divorced mother, is afraid to think of the future. She said she just can’t see one – not for herself but for her ailing son.

“I don’t know how long it will be for me or my son to go on living. What if I go first? Who is going to take care of him?” the 46-year-old asked.

Her 24-year-old son Ronnie Kalong Robert is suffering from Lennox Gastaut Syndrome (LGS) – a form of severe epilepsy that causes paralysis and intellectual disability.

He depends on more than 10 types of medicine, including for bowel movements and epilepsy, as well as sleeping pills and vitamins to make him as comfortable as possible.

Eta uses towels and plastic sheets as diapers for Ronnie.

Eta has to go to Lanang Health Clinic every month to get Ronnie’s medicine supply.

Leaving a disabled person at home alone is not a good idea but she has no one else to help her, not even a family member.

Ronnie is Eta’s second child from her second husband. They were living in Miri when Ronnie was born.

LGS caused Ronnie to have multiple seizures soon after birth. At three years old, he had already lost the ability to walk.

Eta’s alcoholic husband neglected her. Desiring a better life, she divorced him and went back to her longhouse in Kanowit.

Ronnie was only about eight months old at that time.

As there was no work in the village, she moved to Sibu and found jobs in coffeeshops. In her absence, Ronnie was looked after by his grandmother.

Hard times

Being separated from her son was agonising for Eta. She cried every night thinking of Ronnie.

One thing she dreaded was phone calls from her village as it was bad news every time. And she got such calls almost every month.

“I’d go home for maybe two weeks – sometimes just a few days. I had to work in different coffeeshops because I got sacked many times. The owners could not accept that I needed to frequently go back to the longhouse,” she said.

Eta blends porridge with chicken and carrots to ensure Ronnie gets the nutrition he needs.

Though she could not keep a steady job, Eta was able to earn about RM600 almost every month and she got by with the amount plus aid of RM300 from the government.

With the money, she could send the prescriptions back to Ronnie and also some food for her family as a gesture of appreciation for taking care of her son.

Everything was working well until Eta’s father passed away. Ronnie was 14 years old at the time.

Not on good terms with her brother, Eta decided to take care of Ronnie herself.

“I carried him to the boat. No one helped me. I peddled to Kanowit town, and took a taxi to Sibu. I can see him every day and know his condition – whether he is in pain or not,” she said.

Both mother and son are currently living in a room at Laichee Lane, Sibu, at a monthly rent of RM180. The room has a living space, kitchen, and bathroom.

It’s a simple home with a TV, cupboards, a washing machine, and a fridge, which she bought after winning the lottery many years ago.

A photo of Ronnie in the living room.

She set up a bedroom at a corner of the kitchen and padded the four corner walls with mattresses to prevent Ronnie from hurting himself.

She sleeps in the living room – sometimes in the kitchen.

Daily routine

During the day, Eta feeds Ronnie, cleans him and gives him his medication on time.

As she cannot afford disposable diapers for Ronnie, she buys towels instead for use as ‘cloth diapers’.

She cuts thick plastic material into the shape of a diaper cover, places six towels in it and puts it on Ronnie.

“Normally, I buy two metres of the plastic material for RM6. I can cut three pieces of diaper covers from it. They can be used for about a month. I try to be careful so that they won’t tear so fast,” she said.

Eta has to change the ‘diapers’ five times a day and wash them.

“The people who just moved into the neighbourhood must be wondering why there are so many towels hanging outside. They probably think I have a baby.”

Sometimes, there are not enough towels to go round, especially on rainy days. So she has to constantly wash and keep them dry.

Despite having her hands full, she always makes it a point to keep the room clean.

After finishing the house chores and after getting Ronnie to bed in the evening, she goes to work.

Dengue fever

Everything seemed to be working well until two years ago when Ronnie fell sick.

Eta thought it was just common flu but Ronnie did not get better. In fact, he got worse – much worse. He wasn’t down with the common flu but something more serious – dengue haemorrhagic fever.

Eta turned to her neighbours for help as she could see something was not right with Ronnie. He didn’t get better but kept vomiting and she feared for him.

Her neighbours asked her to call the ambulance. When the hospital personnel came, they confirmed Ronnie had dengue haemorrhagic fever.

He was bleeding in the face – from the eyes, ears and nose – and had difficulties breathing.

Ronnie was admitted to intensive care unit in hospital fighting for his life.

The doctor decided to perform tracheostomy and nasogastric (NG) intubation to save him.

Tracheostomy is a procedure to create an opening through the neck into the trachea to provide an airway and remove secretions from the lungs.

NG intubation is the insertion of a tube into the stomach through the nose – enabling the patient to eat and get nutritional support.

Gave up

Eta was required to sign a consent form for the doctors to operate. But she refused to sign. She just gave up.

“I saw him lying in the hospital bed in pain. He could hardly breathe. It hurt me so much that I didn’t want him to go through all the suffering anymore.

“I ran out of the hospital. I couldn’t bear to watch what was happening. I didn’t want to sign. I gave up,” she recalled.

The memory still haunts her. It was a day of so much regret and hopelessness – a day she lost the will to fight.

All her life, she has been living in poverty and she wouldn’t mind being poor but because of the suffering of her son, she was not willing to carry on and just gave up.

However, after some persuasion from her cousin, she relented and agreed to sign and then went back to see Ronnie.

He was crying profusely. Up to that day, he had cried only twice in his life.

The first time was when Eta brought him from her village to Sibu. That cry was for his grandmother. He missed her.

That day at the hospital, the cry was for his mother.

“That was when I realised he might be disabled but he can feel and he knows I’m his mother. At that instant, I knew he was begging me not to leave him.

“All my life, I’ve never left him. That was the first time,” she recalled.

Photo shows Ronnie’s prescriptions.

Pulled through

Eta promised her son she would never leave him again and assured him everything was going to be all right.

Ronnie pulled through, and 15 days later, was discharged. But Eta could no longer go to work.

With NG intubation, Ronnie has to be fed every three hours and a nurse will come every two weeks to change the feeding tube.

Mother and son are now surviving on RM350 monthly aid from the government.

Eta said the first thing she did after receiving the money was to pay the rent and bills.

“We will be here for the rest of our lives. We cannot afford to get thrown out. Sometimes, the nurse gives me some money – some generous people too. If I don’t have enough money to buy food, I just go and find vegetables.

“I don’t mind if I don’t eat as long as Ronnie is okay, I’m happy.”

She said Ronnie needs two eggs daily, so whenever she has a little extra from generous people, she would buy eggs.

Eta sewed a pair of gloves to cover Ronnie’s hands and a scarf to cover the left side of his face to make sure he will not disturb the tube.

Photo shows Ronnie’s sleeping chart, which Eta has to keep track of.

Hanging in the balance

As age is catching up with Eta, their lives are hanging in the balance.

“My body is not as strong as before. There were times I forced myself to take care of Ronnie, especially when I was sick. I fear that one day I won’t be able to take care of him anymore and what is going to happen to him,” she sighed.

Such thoughts keep her awake almost every night. Prayers are all she has in hoping for a miracle.

“I don’t know what will happen tomorrow or the day after. I will do whatever I can to take care of Ronnie. But for how long, I don’t know. Only God knows,” she said.

 

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