Hidden Heroes

“There are only four kinds of people in the world — those that have been caregivers, those that are caregivers, those who will be caregivers, and those who will need caregivers.”
_{Rosalynn Carter, former First Lady of the United States}

Caregiver:

"A person who has taken on the responsibility of looking after someone who is unable to care for himself or herself due to illness, frailty, disability or a mental health issue."
_{(Agency of Integrated Care, 2023)}

This is Nadia.

Growing up, Nadia Daeng spent her twenties and thirties helping her widowed mother care for Nadia’s elder sister, who faces mental health issues and an intellectual disability.

After her mother suffered a stroke in 2019 which progressed to dementia in 2022, Nadia also became a primary caregiver amid the COVID-19 lockdowns.

She quit her job in public relations to attend to her mother’s needs. Nadia found herself overwhelmed as a full-time caregiver, even with the support of her two brothers. “I could not have a full night’s sleep for three solid years,” the now 40-year-old said.

Nadia recounted only having four hours of personal time three days a week during the pandemic. Although it has been over a year since her mother died, Nadia says she is still recovering from the trauma of those heavy years.

“I feel like I am still teaching myself to put myself first. I feel like I am still teaching myself to enjoy life again,” she said.

Nadia Daeng (Photo: Vernon Kow)

For many caregivers, anxiety and stress are constant companions as they manage their daily lives.

Nadia juggled between being her mother’s dietician, nurse and in-house physiotherapist — all day, at the same time. Being her sister’s secondary caregiver in her early adult years and her mother’s primary caregiver afterwards gave Nadia a bleak outlook on life:

“I had come to terms with the fact that all the fun that I had, all of the carefree fun I had was in my late teens just before my father passed away. And then a lot of my adult life was anxiety, anxiety, anxiety.”

The demands took a toll on Nadia’s emotional well-being. She remembers being constantly on edge during the pandemic, worrying if her mother was doing well and if she ate the right medication. The cumulative stress resulted in a period of caregiver burnout for Nadia, where she began to display symptoms of depression.

Nadia's struggles with caregiver burnout.

Caregivers like Nadia go through these stresses all for the sake of seeing their loved ones safe and well. Yet, in doing so they may neglect their well-being.

Veena Nanthakumar, Outreach Manager at Caregivers Alliance Limited (CAL), describes how selfless caregivers are. “When you really love someone, you really go the extra mile for them. And that’s what caregiving is about, especially for a loved one with a mental health condition,” she said. Veena is a trained counsellor with over 13 years of experience in mental health support.

Still, caring for those with mental health challenges requires a leap of faith without any certainty of recovery. Many caregivers do their best to support their loved ones even without an end of improvement in sight. Caregivers often feel lost or in crisis as a result and need to understand how to care for themselves too, as they "cannot pour from an empty cup".

In Nadia's case, she often felt guilty at times as a caregiver and had to remind herself to practise self-care:

“You think that anything that you do for yourself is selfish, which is clearly not true because at the end of the day if you are not well, then how can you possibly care for another human being who is dependent on you?”

Veena Nanthakumar, Outreach Manager, Caregivers Alliance Limited (Photo: Caregivers Alliance Limited)

Three-quarters of caregivers expressed a need for temporary separation from the person they care for.
(Singapore Management University, 2020)

Photo: Bruno Aguirre on Unsplash

Caregivers may not exercise self-care because many do not even see themselves as caregivers.

A survey conducted by the Agency of Integrated Care (2023) found that only 49 per cent of caregivers in Singapore identify as one. Not recognising you are a caregiver leaves you unaware of the demands of your role and the mental health challenges that come with it.

Some only associate caregivers as domestic helpers or housekeepers and do not identify as such despite taking responsibility for looking after someone else. To others, caregiving is an expected family duty, and they may set aside their well-being for the sake of their loved ones.

Nadia found herself consumed by her daily responsibilities as a primary caregiver and frequently blamed herself as a “terrible unfilial child” when she was unable to cope. Nadia was stuck living alone with her mother during the pandemic and caught up in the day-to-day stresses, thus initially unaware of the resources and support available to her:

“It’s not just a matter of, oh you’re not putting enough messages (for caregiver resources) out there. It really is because, for some of us, caregiving can be an extremely isolating experience.”

How can you support caregivers?
^{(Ang, 2021)}

• Encourage them in their efforts for their loved ones.
• Offer help in small daily tasks like washing dishes.
• Listen and attempt to understand their needs.
• Remind them of the importance of self-care.
• Assure them that help is available and they are not alone.

Photo by Jackson David on Unsplash

Photo: upklyak on Freepik

Nadia eventually confided in her best friend about her struggles and was persuaded to seek professional support. She started attending talk therapy sessions with a counsellor and support group sessions at CAL, where she found much-needed help.

CAL’s flagship programme is their Caregivers-to-Caregivers training programme (C2C). Caregivers like Nadia get to hear each other’s struggles in a safe space and be equipped with knowledge and skills around mental health, self-care and healthy boundaries.

“I found a support group of people who were going through the same thing as me and my family,” Nadia said. She was surprised to find people from all walks of life attending the C2C programme and was comforted knowing she was not alone in her struggles.

Furthermore, CAL conducts training and awareness workshops for businesses and youth on mental health. Veena finds CAL’s programmes empowering for caregivers, allowing them to find joy in their role:

“They don’t have to hide away in shame, but they can say it loud and proud — Yes, I’m a caregiver, and I’m happy to be one.”

Veena conducting a mock C2C session (Photo: Caregivers Alliance Limited)

Fireside Chat by CAL on youth mental health (Photo: Caregivers Alliance Limited)

Peggy Ng, Assistant Manager, Filos Community Services (Photo: Hannah Chua)

Filos Community Services at a mental health awareness exhibition (Photo: Filos Community Services)

In addition to emotional support for caregivers, having access to practical support is also crucial. Filos Community Services and Caregivers Alliance Limited form a network of social service agencies (SSAs) to support people like caregivers in various areas.

Peggy Ng, who works in the community mental health team at Filos Community Services, coordinates with the broader society to help caregivers. “We need to collaborate with other agencies to provide timely and relevant services that the caregiver may need for themselves or their (loved ones),” she said.

Filos Community Services works with community nurses from local hospitals to advise caregivers of loved ones who require medical support. They also provide financial aid to those in the community who may have given up their jobs to care for family members. Discounts for private-hire transport services are also offered should it be difficult for caregivers to escort their loved ones to medical appointments.

Peggy's team works with numerous other facets of society, including the Institute of Mental Health (IMH), town councils, government agencies, and even the families and friends of cases they work with. Such whole-of-society support is necessary, especially for complex cases of individuals facing mental health challenges. However, it is not easy to bring together sectors with different priorities, according to Peggy:

“In the past, people from the social service community would say (to those facing mental health challenges) to go to the hospital, but when they go to the hospital they end up being told to go back to social services.” That has changed, however, as agencies like Filos Community Services serve to integrate support from various areas. SSA workers like Peggy have the challenge of building trust with these stakeholders and creating a network where help can be provided more easily and efficiently.

Many who find support from SSAs like Filos Community Services and CAL come on board as volunteers or even full-time staff themselves, wanting to help others like them in turn. Nadia now works full-time as a Program Manager at CAL and feels grateful for the work she does.

“Nothing can take away the joy and privilege and satisfaction from knowing that the work you do helps other families and makes the world a better place.”

More than half of CAL’s current staff base are caregivers who have received support from CAL’s programmes. Veena notices visible transformations in caregivers who eventually volunteer to run the very events they have benefited from, drawing from their life experiences and working behind the scenes — “selfless hidden heroes”, as she calls them.

Veena is also encouraged to see the younger generation’s attitude toward mental health in CAL’s programmes. Together with the National Youth Council, CAL customised a C2C for young peer caregivers from ages 15 to 35 (Caregivers Alliance Limited, 2021). Veena notes how many of these young minds are more open about mental well-being and their own mental health challenges, which helps to break the stigma around these issues.

“It's very heartening for me,” she said. “I feel like they are more forthcoming than say, the people who are of the older demographic."

Caregivers' notes to express their gratefulness for CAL's support (Photo: Vernon Kow)

Nadia faced great challenges as a caregiver, experiencing burnout and developing mental health issues of her own. Yet, she does not regret those years caring for someone she loves, despite the difficulties.

Nadia’s mother eventually passed due to health complications in September of 2022, spending her last days in the hospital. Nadia and her siblings took turns staying by her side, making sure she was comfortable and saying their final goodbyes.

“So it was my turn, and it was just her and me in the hospital, and I was thinking back to the last three years of my life and I just hugged her and I told her, I said, thank you for being my mom.”

Nadia’s sister now stays at a residential facility where she receives support for her mental health challenges and integration into society. Nadia continues to be a secondary caregiver to her sister, accompanying her to medical appointments.

Nadia acknowledges those three years as her mother's primary caregiver were painful. The challenges she faced in her early adulthood helping to care for her sister also created tensions in the family. However, Nadia says she does not regret caring for her mother. More than anything, she finds herself grateful for the opportunity to care for a parent she loves.

“It was something that I was able to give back to her, for all the years that we were not on the same page.”

As a program manager at CAL, Nadia deeply values the support and training she received from CAL, which she says has made her a better caregiver to her sister and a better person. She says she has found her calling supporting other caregivers and strives to continue advocating for mental health causes.

“I want to live in a world where there is no need to look down on someone who needs help. You should want to be able to help others because it feels really good…you know, being nice feels good!”

Nadia looks back and recounts her last moments with her mother.

*Nadia at the 2022 Singapore Patient Action Awards (Photo: Caregivers Alliance Limited)*

*Nadia at the 2022 Singapore Patient Action Awards (Photo: Caregivers Alliance Limited)*

"Because I allowed myself to receive help, I have the support I need. I am a much better caregiver for my sister now, to ensure her quality of life in spite of her condition."
_{Nadia Daeng}

You are not alone. Help is available.

CAL

Filos

References:

Agency for Integrated Care. (2023, May 20). AIC kicks off campaign to appreciate and support caregivers. Agency for Integrated Care. https://www.aic.sg/about-us/Documents/Press%20Release/2023/AIC%20CG%20Media%20Release_20%20May%202023_newsroom.pdf
Ang, B. L. (2021, December 23). Caregiving another chapter in a journey and snuffing out burnout. Ministry of Social and Family Development. https://www.msf.gov.sg/what-we-do/odgsw/social-insights/Caregiving-Another-Chapter-in-a-Journey-and-Snuffing-Out-Burnout
Awang, N. (2021, March 6). The big read in short: Answering the silent cry of caregivers. TODAYonline. https://www.todayonline.com/big-read/big-read-short-answering-silent-cry-caregivers
Caregivers Alliance Limited. (2021, September 20). C2C training programme for young caregivers (PMHI). CAL Singapore. https://www.cal.org.sg/post/pmhi-c2c-training-programme-for-young-caregivers
Singapore Management University. (2020, December 9). 3 in 4 caregivers of persons with mental health issues highlight a need for temporary separation from the person they care for, Singapore’s first national survey on caregivers finds. SMU Newsroom. https://news.smu.edu.sg/news/2020/12/09/3-4-caregivers-persons-mental-health-issues-highlight-need-temporary-separation

Special Thanks & Credits:

Nadia Daeng, Veena Nanthakumar and Peggy Ng for availing their time as our interviewees
Cyan Khoo and Caregivers Alliance Limited for coordinating with our team and allowing us to film in their office space
Music: Vyncke, Arthur. Warm Solitude, Cold Loneliness, BreakingCopyright
Cover photo: 13on on Unsplash