'If he needs to go … we have to let him go': How a mother is coming to terms with her son’s terminal illness

SINGAPORE: When her son had a seizure and scans showed a growth inside his brain, she put up a strong front.

When he underwent surgery and woke up unable to speak or walk, she put on a brave face.

And when her husband had to do a heart bypass and her sickly mother was hospitalised, all in the same period, still she remained stoic.

“It was a lot,” said Madam Rima Melati. “When I wasn’t working, I was in and out of the hospital, running up and down to check on my husband, my mother and my son.”

“Some of my friends and colleagues, who knew what I was going through at the time, couldn’t believe that I still seemed so normal. But I had to, because I’m a mother. If I fall or break down, then who is going to manage things?”

But when tests confirmed that her son, 27-year-old Afif Yusli, had a terminal disease and could die in just a few months, the facade shattered and her world fell apart.

“I was stunned. I couldn’t believe that he might only have 18 months left,” said the 56-year-old, as her voice broke and tears welled up in her eyes. “I was so scared of losing him.”

"I PUT ASIDE MY OWN FEELINGS"

With her son embarking on an intensive regimen of chemotherapy and radiotherapy, Mdm Rima, who had been employed in retail as sales staff, decided to stop working to care for him.

“When I gave my boss my resignation letter, he refused to accept it and was very understanding. He told me to take a break for three months and then update him if I needed more," she said with a smile. "He wanted to keep the job for me."

“I told my husband and my two (other) children that I would accompany Afif to all his appointments and take care of him and that I wouldn’t disturb them even on their off days.

"I told them to focus on their work and to let me handle everything else,” said Mdm Rima.

“Since I stopped working, money has been a bit tight, so we just have to be more careful with money, especially when it comes to marketing and cut down on other expenditures.”

Her husband, who works as a security guard, and daughter, who works at the same company as hers, are currently the sole breadwinners of the family, earning a total of around S$3,000 (US$2,200) a month.

“None of us ever expected this to happen and I think it was especially emotional for my husband, but we never talked about our feelings,” said Mdm Rima.

“We knew we had to be strong for Afif and needed to stay positive, so I put aside my own feelings and focused on him."

“EVERYTHING WILL BE FINE, EVERYTHING WILL BE FINE”

But being a full-time caregiver to her terminally ill son has proved more challenging than the mother-of-three could imagine.

In the months that followed his diagnosis, Mr Afif fell into a deep depression and lost hope of living. This naturally worried Mdm Rima, who was also struggling with her own emotions.

“For the past few months, it has been quite tough to figure out what he needs and understand his sickness,” she said gently.

“Afif may look normal but he’s not, because something can happen anytime, and the scary part is not knowing what will happen and when.

“He’s also become more sensitive and emotional, so I have to be more aware of how he’s feeling and be more mindful in the way I speak, even in my intonations," she added.

“When he doesn’t have any appetite, I still have to try to find a way to get him to eat, because he needs the energy.”

It's been even harder forcing herself to allow him to leave the house on his own.

“I'm always concerned ... because sometimes he has problems with his vision. I worry about what happens if he accidentally bangs into someone and they get angry with him or pick a fight.

“So, before he goes out, I always ask him if he’s okay and if he says he is, I have to let him go out by himself, because I want him to have a normal life and to go out with his friends. I don’t want to cling on to him," said Mdm Rima.

“But I feel very helpless because all I can do is to focus on feeding him well.

“So I just keep praying and telling myself that everything will be fine; everything will be fine. That’s what I’ve been doing ever since he was diagnosed,” she added, her voice cracking.

Hearing his mother crying in the living room during her interview, Mr Afif, who had been resting in his room, walked in. Quietly, he sank into a sofa behind her and looked at her with concern.

The pair exchanged glances, with the 27-year-old unsure of how to comfort his mother.

Perhaps seeing her son reminded Mdm Rima of her undertaking and gave her the strength she needed. When she spoke again, her voice was steady; she now wore a small grin on her face.

“Afif used to get very emotional and say ‘I’m going to die anyway’,” she said, casting a look of mock annoyance towards her son.

“You know how frustrating it is to hear that as a parent, when your son keeps reminding you that he is going to die?” she tutted, trying to lighten the situation.

Mr Afif smiled and went back to his room.

“He’s more positive now and doesn’t say this so much now, thankfully,” said Mdm Rima.

“It does get physically tiring, but if you tell yourself you're tired, then you feel tired. So I have to stay positive and not think that I’m tired."

When the going was most difficult, she sought solace in her daily prayers, where she would "let out everything, release everything".

“Sometimes, when I do my cooking or my chores, I also listen to calm and happy music and that brings me peace. I just focus on enjoying the music and not think about anything else,” she beamed.

“After that, somehow, I always feel much better."

"I LEARNT A LOT ABOUT HOW TO BE A MOTHER"

The slightest reminder of how she might lose Mr Afif still, understandably, triggers an emotional response in Mdm Rima.

But she also insisted she has accepted things for how they are, and considers her and her husband blessed to have had him as a son.

“Afif is my eldest son and through him, I learnt a lot about how to be a mother. All my children taught me a lot of things and for that I’m so grateful,” she said, with her eyes moist.

“If it's fated that Afif should have this sickness, we just have to .... look forward and move on.”

Given the uncertainty of his disease – where a more specific prognosis remains difficult and varies for patients – Mr Afif’s condition has forced the family to confront their fears and start pondering end-of-life matters.

“Afif mentioned that if he goes into a coma, he wants me to put him in a hospice so that there's someone to take care of him, clean him, feed him and everything,” said Mdm Rima.

“If that's what he wants ... we have to discuss that with the whole family and see what benefits him.”

Yet it's clear that is not what she wants.

“I want him to be at home,” she said quietly, sharing how her mother also took care of her father until he passed away.

As the interview drew to a close, this reporter finally summoned the strength to ask the question she had been dreading to ask: How was Mdm Rima, a parent, coping with the knowledge that her child might die before her?

“If it’s time for him to go … ,” she trailed off as her voice strained again.

This time, and for the first time since meeting with CNA, Mdm Rima didn't stop to collect herself. The tears ran freely.

“If he needs to go, he has to go," she said, softly.

"God lent Afif to us, and when he wants to take him, we have to let him go.”

In the final part of the series, which will be published on Dec 9, CNA speaks to Mr Afif’s doctor and a charity organisation to find out how they help patients like him live meaningfully even as they grapple with death.