Teenager opted for home-schooling to help care for bedridden sister

Amanda Ng has been caring for her sister Amelia, who has a rare genetic disorder that has since robbed her of the ability to talk, chew or urinate. PHOTO: COURTESY OF AMANDA NG

SINGAPORE - Five years ago, when Ms Amanda Ng was 14, she decided to switch to homeschooling so that she could help her parents care for her bedridden sister, who has a rare genetic disorder.

That was when Amelia’s condition deteriorated to the extent that she – then 11 – started to have life-threatening episodes, one of which helped to cement the elder sister’s decision.

“When I came home from school one day, I saw my mum shouting and my helper panicking, trying to get Amelia to breathe again,” Ms Ng said.

“My dad was trying to make her sit up. We didn’t know how to do bagging (rescue breathing) then. She survived, but it really shook me up. If I know my younger sister’s life would not be as long as others’, what am I waiting for?”

Amelia was intubated at 12 and has been relying on a ventilator to breathe ever since.

The transition to home-schooling was very hard for Ms Ng, a self-described social butterfly who was in a school band and on the school council, but she persevered.

On Wednesday, she was among the eight recipients – all females – of the Singapore Patient Caregiver Award at the annual Singapore Patient Action Award.

The award honours caregivers for their strength, resilience and unwavering dedication in caring for another person amid challenges.

HCA Hospice’s palliative homecare nurse for Star Pals (Paediatric Advanced Life Support), Ms Poh Ya Nee, who nominated Ms Ng, said the teenager helps her sister in all daily activities of care, including tube feeding, suctioning and urinary catheterisation, among other duties.

Ms Ng would also coordinate life-saving resuscitation during emergency episodes and participate in end-of-life conversations, she said.

Last year, when Amelia was 15, it became clear that the neurodegenerative disorder she has is infantile neuroaxonal dystrophy, and most children with this disease do not live past 10.

“The most challenging thing for me is that I won’t be able to see my sister in my life forever. I’ll never be able to do a lot of things with her,” said Ms Ng.

“I know the time is limited. What we hold on to are the memories. We talk about death with her.”

Ms Ng is now in university, her mother works part-time, and her father is a senior executive at an engineering company.

“I tell her, ‘When you’re tired, tell Jie Jie (elder sister in Chinese) when you’re ready to go.’ I tell her, ‘You’re dying but even when you go to heaven, our hearts will still be connected.’”

This year’s patient caregiver award recipients also included four mothers, two of whom are in their 80s.

Since Madam Tan Sng Muay’s daughter suffered a serious accident while in university 14 years ago, the 83-year-old has been caring for her and attending to her every need.

Madam Phat Yock Chan, 81, has cared for her daughter, who was born with Down syndrome, for 46 years now.

Her daughter is now bed-bound and was recently diagnosed with early onset dementia, but the support from a community care team enables the older woman to continue living at home with her daughter.

Another mother, Madam Tahirah Mohamed, 45, has devoted the past 15 years to caring for her nine children, seven of whom have different special needs, including autism spectrum disorder and obsessive-compulsive disorder.

For Madam Tonia Chan Oi Choo, 52, caring for her daughter, Gloria, 22, who has autism spectrum disorder, took a toll on her when she suffered a stroke and was diagnosed with a rare disorder that affects the blood vessels in the brain.

It was a group of friends who helped her through her depression.

One recipient, Ms Nadia Daeng, 39, who transitioned into a primary caregiver role when her mother who used to take care of her intellectually disabled sister had a stroke and then developed dementia, spoke about burnout and the need for self-care.

The other caregiver award recipients are Ms Ratnasari Yawieriin, who is caring for her sister; and Madam Doh Tong Kiok, who has been caring for her neighbour for more than a decade.

Tan Tock Seng Hospital has been giving out the Singapore Patient Action Awards since 2015. This year, the awards were given to 10 individuals and five groups that have made a positive difference to the community.

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