Caring for caregivers: New book offers a lifeline for self-care and support 

SINGAPORE – Ms Julia Chan had always envisioned a life where she could balance family and career.

But reality took a different turn when her elder son was diagnosed with autism at four, and her younger son began showing signs of attention deficit hyperactivity disorder (ADHD) at nine.

When her older son Jedi, now 12, was first diagnosed, Ms Chan’s mind swirled with self-blame. She questioned everything from her pregnancy to potential external causes.

“Could I have done anything to prevent it or did I do something to cause his development to be this way?” she remembers asking.

She watched Jedi struggle to speak and respond, fearing he might never fully communicate or live independently.

“At that point in time, he was parroting. If you said something to him, he would repeat it back to you. But if you asked him, ‘What do you want to eat?’, he wouldn’t answer because he didn’t know how to pull that response from the back of his mind,” says the 40-year-old, whose husband, 42, works as an executive in facilities management. 

Their younger son, Javian, is now 10. They are waiting to hear from the Ministry of Education on a possible ADHD diagnosis for him. 

Her experiences as a caregiver dealing with stress led her to write The Healing Journal: A Caregiver’s Path To Self-Care, a 200-page book published by CaringSG.

The non-profit supports caregivers of persons with special needs, estimating that there are more than 350,000 informal or family caregivers in Singapore.

The book is one of several initiatives supporting caregivers and seeking to give them respite from their responsibilities.

Jedi was diagnosed with autism in 2016. Ms Chan, who was handling social media for a company, felt the cumulative weight of his medical appointments, therapies and caregiving. Although her employer offered flexible hours, the anxiety of potentially losing her job pushed her to work tirelessly to prove her worth. 

The pressure took a toll and she started having tension headaches, sleepless nights and stress-induced breathing difficulties.

At times, relationships with some family members became strained. She felt her husband was not meeting her expectations in household and caregiving responsibilities.

“In hindsight, I realised I had unrealistic expectations. I became a nagging wife who was hard to be around. It’s not fun coming home to someone who’s constantly pointing out what wasn’t done,” she says. 

She realised that while she could not change her circumstances, she could change how she approached them.

One of her first steps was listing out every caregiving task she and her husband handled. 

From driving to errands, she noted down everything, big or small. She circled the duties she disliked most, then talked with her husband about an “exchange” arrangement. 

He would handle tasks she found unbearable, like catching cockroaches, while she managed chores he loathed, such as laundry. This mutual understanding eased the tension in their marriage.

Inspired to write a book for caregivers

In 2018, Ms Chan came across and joined a WhatsApp group chat for caregivers. 

“I witnessed the impact made by caregivers, who even in the midst of their own difficulties, generously shared their advice, resources, networks and even financial support to other caregivers in need,” she says. 

She started compiling the resources she had gathered over the years and created an informal database. The resources included books on parenting children with special needs, strategies for communicating with them effectively and self-care tips for caregivers.

“Some people ask me for (the database), so I send them the link or e-mail it to them. Then I realised, if one day I’m not around, where will people look for these resources? There are an estimated 350,000 caregivers in Singapore and I wanted to share these resources with as many of them as possible,” says Ms Chan.

This inspired her to write her book, which provides guidance, encouragement and practical toolkits to help caregivers navigate challenges, find balance and heal emotionally, mentally and physically.

The activity she did with her husband on exchanging unpleasant tasks to mitigate the strain of caregiving is also detailed in her book.

She includes exercises that guide caregivers to identify their own needs before addressing others.

“Caregivers are often the invisible help. This journal is a reminder that we need to care for ourselves first,” she adds.

In November, the book was distributed to a few caregivers and donors of CaringSG as part of a soft launch. It will be officially launched at the CAREforward event by CaringSG at Punggol Regional Library on Dec 1. 

Ms Susan Chia, whose 16-year-old son has ADHD, says the book has been a “great help”.

She says caring for him can sometimes be stressful, and she often questions why this happened to her son. At times, she also feels depressed, but makes a conscious effort to maintain a positive mindset.

“The book guides me on writing notes on self-love and self-care, and when I look at them during low moments, they help me feel better. It gives me a boost,” says the 42-year-old, who is married and works as a supervisor in a restaurant.

The healing activities in the book have also benefited her. 

“When I’m stressed or struggling with low self-esteem, it can be difficult to think of activities that help relax the mind. The book offers reminders of therapeutic options like bonding with loved ones over games, watching comedies and going for a massage. These are simple yet effective ways to lift our spirits and improve mental well-being,” says Ms Chia.

In June, Ms Chan quit her job and joined CaringSG. She currently contributes to community events, social media marketing and membership.

Training caregivers to support one another

Ms Teo Hui Fang, who is the head of programmes at CaringSG, says its caregiver volunteer training programme has trained 66 caregivers as CAREbuddies or CAREchampions since 2021. 

CAREbuddies provide emotional support and a listening ear to fellow caregivers, while CAREchampions support a fellow caregiver as a peer in group settings at community events.

To widen the programme’s reach, CaringSG is in talks with social service agencies, such as the Early Intervention Programme for Infants and Children Centre, and special education schools to train their parent volunteers to support fellow caregivers, says Ms Teo.

CaringSG aims to engage at least five social service agencies to implement this programme, aiming to train 160 caregiver volunteers by March 2026, she adds.

The programme, offered free of charge, runs for 24 hours over a three-month period. Participants learn various skills such as effective communication strategies and problem-solving skills to help caregivers manage challenges. 

It is open to Singaporeans and permanent residents aged 18 to 65, who are caregivers of individuals with special needs. The course is delivered through e-learning modules and live sessions on Zoom.

Piano teacher Vanecia Er, who has a 12-year-old son with autism, became a CAREbuddy in 2022, after she found out about the programme on CaringSG’s website.

After undergoing training, she was assigned to a fellow caregiver who has a child with special needs.

To stay connected, Ms Er uses methods such as Zoom sessions, face-to-face meetups and texting.

“My aim is to remind them that they are not alone and to encourage them to share their challenges. We are all in this together, offering mutual support and understanding,” says Ms Er, who is married and has an eight-year-old daughter.

Ms Er has found the experience mutually rewarding.

“Before becoming a CAREbuddy, I rarely talked to others and struggled to find someone to share my thoughts and experiences with. Through this programme, I met other parent caregivers who, like me, mostly needed a listening ear and someone who understood their journey,” she adds.

Relief with a retreat

Supporting caregivers is crucial, as they often bear a heavy emotional, physical and financial burden while caring for loved ones with special needs or mental health challenges. 

Caregivers Alliance Limited (CAL) chief executive Tim Lee says, according to programme managers who have been training mental health caregivers since CAL’s inception in 2011, caregivers frequently face challenges like limited flexible work arrangements, a lack of respite, insufficient emotional support and financial difficulties.

To address the need for respite, CAL launched a pilot Respite & Resilience Retreat. 

The first retreat took place in May, followed by a second one in October, supporting around 30 mental health and dementia caregivers.

These caregivers, overwhelmed by burnout, isolation and the constant demands of caregiving, were provided with the space to recharge, reset and build resilience, says Mr Lee. 

The retreats, which required a $50 registration fee, were held at Montfort Centre in Upper Bukit Timah Road. 

The majority of the participants were females aged 40 to 60, and were caregivers to children and parents with conditions such as depression, dementia and schizophrenia.

In October, Ms Janet Yeo joined the retreat, seeking respite from her caregiving duties.

The partner in an interior architecture firm is a caregiver to her 86-year-old mother with dementia as well as her own husband, who is in his 70s and recovering from cancer. 

The period from July to September was particularly challenging for Ms Yeo. Her husband had surgery and was undergoing treatment, and her mother was taken to a hospital’s accident and emergency department for urinary issues.

“I didn’t know I was on the brink of burnout until I attended the retreat,” says Ms Yeo, who is in her 50s and has a 19-year-old daughter. 

The retreat made her realise that she needed to take care of herself too. “I took steps to change that by setting aside time to exercise and ensuring I got enough sleep,” she says.

The two-day, one-night retreat was a home away from home for caregivers, says Mr Lee. 

“They learnt to be intentional about self-care, experienced the benefits of stepping away from their caregiving tasks, reconnected with themselves and, importantly, found social support through the new friends they made,” he adds.

The retreat has a waiting list, and CAL is in discussions with a corporate partner to fund its third run. The retreat is open to all mental health caregivers in need of a break.

Mr Lee says it takes a village to support people with mental health conditions and their caregivers.

He hopes that more employers in both public and private organisations will recognise that their employees are, or may become, caregivers. As such, they need compassionate and flexible work arrangements and support to thrive in the workplace while continuing to be dedicated caregivers to their loved ones at home.

“As Singapore continues to strengthen its mental health ecosystem, we hope more companies will step forward to collaborate with us. For example, allocating a budget to send their employees, who are also caregivers, on such company-funded retreats could serve as an additional measure to support mental well-being in the workplace,” says Mr Lee.