In one of many tender scenes in “Holding Moses”, Randi Rader’s arm is wrapped around her sobbing son, his shock of curls obscuring part of her face. She presses his small palm against her nose and mouth, eyes shut, and rocks him gently. The camera’s angle shifts to reveal Moses’s profile smooshed against his mother’s, his disabled body wrapped in her protective, enabling embrace. Over the course of this 16-minute documentary, directors Rivkah Beth Medow and Jen Rainin unravel an intimate reel of a family living with disability. The lens lingers as silent witness to Rader and Moses’s familial expressions of love, capturing moments of play, rest and solitude as they navigate and negotiate the other; holding, touching, kissing and exploring. It is a delicate portrait of a single mother learning to care for her child with a rare genetic disorder—a powerful and authentic snapshot of life as a caregiver.
“It feels like such a heavy, heavy burden that I did not know how to hold, and I felt unequipped to handle [it],” said Rader in a voice-over narration. “I felt like I was losing my independence, and my ability to be the person that I wanted to be in the world.”
These raw sentiments, while shared by many, barely scratch the surface of the caregiving experience, which even if rewarding for some is more often than not challenging, isolating and thankless. Is it any surprise that caregivers so frequently speak of the conflicting feelings of love/guilt, sorrow/joy, duty/resentment, fulfilment/frustration, empathy/antipathy.
Rader—a mother—easily fits societal stereotypes of the role. But within the same film is another segment of the caregiving population that frequently goes unnoticed and hence, doesn’t get the support that it needs. Rader has two daughters, and the film captures briefly her eldest child interacting with Moses in the kitchen. The gentle gesture of her reaching out to hug and kiss her brother shifts the focus, if fleetingly, to another family member in his orbit.
What is she saying? How does she factor into the daily routines carved out by her mother? Where does she fit into the wider family dynamic, as the older sibling to a disabled brother who, through no design of his own, will require a significant proportion of their mother’s attention? To posit these questions is to wonder how a child might be obliged to contribute to the caregiving role that adults perform at home. Children are less likely to be involved in the visible, physically demanding duties of unpaid service; more often drawn in as caregivers in subtler, indistinct ways.
Caregiving work has been at the core of human existence throughout history and entails substantial social, labour and material resources. Broadly speaking, a caregiver is “a person who is responsible for looking after another person.” This might be someone with short- or long-term limitations due to disability, illness, injury, frailty or a mental health problem. They could be a family member, partner, relative, friend, or even a neighbour. Caregiving tasks include: feeding; toileting; household chores; providing health and medical needs, like bringing someone to the doctor’s; and simply offering someone a listening ear. Each caregiving situation demands more of some people than others, hence the traditional distinction between the “primary” caregiver and the “secondary” one(s).
According to the International Alliance of Carer Organizations, there are more than 63m carers globally. In Singapore, the figure was estimated at more than 210,000 in 2021, and is expected to rise significantly as the population ages and life spans lengthen. Informal caregiving has become an increasingly important aspect of society, alleviating the pressure on an overloaded healthcare system.
Due to gender socialisation, this responsibility has mostly fallen on women. In 2022, of all residents 15 and over who were outside the labour force due to caregiving and housework, 96 percent were women, according to the Association of Women for Action and Research (AWARE). This, it said, stemmed from age-old, gender role stereotypes and patriarchal norms of women being primary caregivers, while men are breadwinners.
The more contemporary dynamic is the growing responsibility of caregiving on the young. As a result of factors like people having children later, family sizes shrinking, a growing number of single-parent families, and most recently, the pandemic, the burden of unpaid care is becoming more widely shared by children and young people, a trend evidenced in the US, and likely elsewhere. The 2020 Global Carer Well-Being Index by Embracing Carers found that 20 percent of the over 9,000 respondents surveyed across 12 countries were new to caregiving, of which 60 percent were Gen Z or millennials.
“The great variability among caregivers in the experience of caregiving suggests that caregiving is an idiosyncratic process,” wrote Montgomery and Kosloski (2009). In the absence of an “average” caregiver, each caregiving situation necessarily reflects the “unique histories and circumstances that accrue to individuals situated in a specific family, in a specific culture, at a particular historical time.”
Twenty-three-year-old Tasneem Abdul Majeed’s younger brother was diagnosed with autism spectrum disorder when he was two years old and she was five. “I couldn’t understand why he got all this attention,” she said. “I was confused and started to feel a bit of envy…Sometimes I would cry to try to get their [parents’] attention. That jealousy caused a bit of rivalry, although I did try to play with him.” At school, Tasneem would feel left out, “upset whenever my friends would talk about their neurotypical siblings. They would go to restaurants and study together. I couldn’t relate to that.”
Her brother’s condition also influenced her family’s routines. To accommodate his needs, they would avoid crowded places, shopping online for instance: “We’ve never been to a cinema as a family ever. We have gone to the same shopping mall on weekends for the past 10 years to have that sense of consistency.”
Shy when young, adolescent Tasneem experienced “imaginary audience” syndrome when her brother had meltdowns in public due to sensory overload. She would think that “everybody was looking at us,” and “started to get very self-conscious…and really frustrated whenever these episodes would happen.”
Despite struggling with these thoughts, Tasneem began to help her parents, easing the pressure of them being full-time carers. When out with her family, she would help pick up things that her brother might have accidentally knocked over, or if he spilled a drink, she would clean it up and apologise to the staff. Holidays abroad involved more administrative work, like printing out individual itineraries and personal documents, calling up airports before departing to ask about special assistance services, as well as explaining her brother’s condition and needs to whomever they met.
Given such circumstances, does the stereotypical image of a family caregiver still hold? Is the hierarchical differentiation between primary and secondary caregivers relevant anymore? These terms can further limit the inclusion of caregivers—already a deeply invisible community—who might not fall neatly into either bucket, and hence aren’t recognised, or don’t identify as caregivers. Both conditions threaten a carer’s ability to manage caregiver burden—the mental, physical, social and financial impact of informal caregiving—leading to negative consequences, like severe burnout.
Children and young people who take on supportive caregiving duties are particularly vulnerable. Research shows that caregiving can “lead children to experience social withdrawal, declining school performance, stress, mental health problems and a decline in physical well-being.” Many caregiving situations demand of children a level of emotional and psychological maturity that's beyond their years. Childhoods are prematurely shortened in the process; time normally reserved for play, socialising and extracurricular activities are instead replaced with care responsibilities. (And the refrain: “I can’t, because I have to go home to help my mum/dad/gran.”) A young carer’s world expands even as it shrinks: having to contend with the realities of adulting; while dealing with a growing isolation from their peers.
In the throes of the pandemic, Sarah Pang (not her real name), 26, became a caregiver to her younger sister, who had just been diagnosed with schizophrenia. Sarah had noticed her sibling’s personality changing at the end of 2019 and early 2020. “She locked herself in the room and kept herself in dark spaces. She didn’t want to interact with us. And when we tried to pull her out [of the room], she would get a little violent.”
No one thought anything more of it, until her sister became more isolated, had trouble sleeping at night and her grades started to suffer. Sarah’s parents took her to a primary care doctor who believed that she might be experiencing a form of psychosis. The symptoms worsened. She started hallucinating. “I was her room buddy and observed all this [change in behaviour]. It was very odd for me and quite scary,” said Sarah. “I didn’t recognise her anymore. Like physically she was there, but I felt like a part of her died.”
Sarah was overwhelmed, but didn’t know whom to share her feelings with and how to express it. “It got to a point where my mental health was affected…and I had thoughts about whether life was really worth living anymore,” she recounted.
It’s not uncommon for people who are thrown into a caregiving situation to experience ambiguous loss, which refers to loss that’s unclear and lacks closure. Those affected can feel a profound sense of sadness and unresolved grief. “When I think of grief I think of funerals and death. My heart was broken. I felt like I had lost someone very dear to me,” Sarah explained. “It took me some time to understand not to hold on to who my sister used to be…Rather I’ve learnt to accept her for who she is now—my sister who is recovering—and being excited for her growth.”
These days, the Pang family are united in caring for their youngest daughter, each playing their own role. Sarah watches out for her mother who is the main caregiver, and continues to be a confidant to her sister, cheering her on when needed, and making sure she takes her medication. Even her two brothers are showing more care towards their younger sister; spending more time with her, so that Sarah can take time out to recalibrate. “My sister drew our family even closer, because there’s a common goal of wanting to help care for each other and my sister through this journey.”
In the evolution of their respective roles and collective approach, the Pang family is a microcosm of the idea that “caregiving is universal,” in the words of Rosalynn Carter, the former US first lady and a champion for the welfare of caregivers. She also famously declared: “There are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Finding an equilibrium as a caregiver takes time. Young people at the crossroads of their lives, as they enter adulthood, are confronted with the daunting prospect of establishing their selfhood; understanding who they are, what they want, and how to achieve their aspirations. They have greater independence, but also have to manage caregiving responsibilities. The idea of simply wanting to enjoy their youth can trigger waves of guilt.
“It feels very bad to say, but there was a time that I felt like my life was stolen from me,” said Iman Hakim, 29, until recently a caregiver to his grandaunt, who passed away after battling diabetes and Alzheimer’s for years. His caregiving responsibilities started in late 2016, when he was barely out of National Service and grappling with his newfound freedom. He was working as an assistant theatre educator, and about to start a part-time degree, when his grandaunt was hospitalised after surviving a fall. It left her unable to move independently and requiring round-the-clock care. With his mother and elder sister working full-time, his two younger sisters still in school, the momentous responsibility of caregiving fell on his youthful shoulders.
His grandaunt, or “nenek”, ("grandmother" in Malay), as he preferred to call her, had lived with his family since he was a boy, and looked after him while his parents were out working. Their roles were now reversed: Iman fed and bathed her, changed her dressing and diapers, administered her medicine, moved her regularly so that she wouldn’t develop bedsores, and brought her to the hospital for check-ups. Despite his best efforts to remain optimistic, the physical and emotional strain of his caregiving tasks wore him down eventually, and he collapsed in tears in front of his younger sister.
“I felt so alone on this journey,” he said. “This is where the resentment comes in, because you’re young, you want to explore things in life. Then suddenly you have this huge responsibility. And that’s when I feel left behind because the world passes by so fast.”
The breakdown proved to be a blessing of sorts. After attending a counselling session in school, Iman realised that caregiving was not a one-person job, and reached out to his family for help. After almost two years as the sole caregiver to his grandaunt, his mother and sister started helping out every evening.
“At the beginning I had this naivety, like I’m going to give up my time, I can take care of my grandaunt [alone]. But as time progresses, I realised that there is a need for me to have time for myself. It’s important for your mental health,” he said. He finally had time to focus on his studies. There was also the question of him getting a job. Until then his mother had given him an allowance but that didn’t allow him the financial independence he craved.
Financial independence is one of the major stress points for young adult caregivers, who have to put their life on hold in order to fulfil their caregiving duties. While his peers have had several years to save towards an imagined future, Iman, who graduates soon, will only begin to build his life as he approaches 30, the excitement of working full-time and earning an income dampened by the nagging fear of not being able to find a job. “Thinking about the future scares me. How am I going to prepare for it? How will I look after my siblings [and parents]? It gives me anxiety.”
Teo You Yenn, associate professor of sociology at Nanyang Technological University, noted in a speech at last year’s Singapore Economic Policy Forum that regardless of one’s age and role in a household, most people are “entangled in the tensions between wage work and the responsibilities of care.” For children, their formative years are invariably impacted by their parents’ work lives and economic status. It affects “what time they have for homework, tuition and enrichment activities, what kind of leisure they do or do not have, and how and with whom they spend their days,” said Teo, who’s also the author of This is what inequality looks like.
On a similar note, Corrina Lim, AWARE executive director, told Jom that young caregivers might have less time to accumulate savings than those who started caregiving later in their careers, and are at greater risk of financial insecurity in the long run, especially if “they cannot maintain steady employment due to caregiving responsibilities.” Considering that young caregivers are likely to become sandwiched caregivers in their 40s, she said, i.e. those who also have children to care for, the situation is likely to be exacerbated. “These problems may persist and indeed compound when the caregivers themselves age and require care,” Lim explained. “Caregivers and care recipients alike should not be forced to age into poverty. Thus, it is extremely important that the government strengthens its efforts to support all caregivers.”
Look no further than Australia, Germany and the UK for best practice national approaches, including strategies, laws and policies, to support family caregivers. In Australia and Germany, care leave enables employees to take time away from work for caregiving responsibilities. And in all three countries, caregivers can receive an income that’s tax-payer funded for time spent caregiving—direct payments to those who qualify, or indirect payments to care recipients who can then pass this on to their carers.
Most developed countries also offer some type of coverage for family care. In 1968, The Netherlands became one of the first to make funding for long-term care mandatory, and has advocated for personal care budgets since the 1990s. The latter supports medical and non-medical care services, such as cleaning, preparing meals and other home chores. By dedicating funding and prioritising long-term care, care recipients have the flexibility to choose how they want to receive their care. It also diverts caregiving responsibilities away from informal caregivers, who tend to be the women in the family.
AWARE has called for the Singapore government to mandate flexible working arrangements and six days of paid family care leave. It has also suggested introducing a caregiver support grant to alleviate some of the financial burden of caregivers, particularly for those unable to work outside. Lim urged the government to provide more subsidies for family caregivers or migrant domestic workers employed for caregiving purposes. Guaranteeing access to respite care services, she said, would help caregivers take a break and reduce their risk of burnout. “Ensuring that all caregivers, no matter their age, have access to informational and emotional support resources can also alleviate caregivers’ sense of helplessness when they encounter unfamiliar care-related situations.”
The Ministry of Health announced in its 2023 action plan for ageing that it would increase the quantum of the (means-tested) enhanced Home Caregiving Grant from S$200 per month to either S$250 or S$400 per month, depending on the recipient’s needs. But given the rising costs of living, driven by a hike in the goods and services tax and core inflation at record highs, will this sufficiently improve the financial security of those in need?
For young people like Iman, who are unable to earn enough to make ends meet, the idea of a taxpayer-funded salary is compelling. After all, it could be argued that they are providing a form of service and labour to the country. “[Informal] caregiving should be recognised as a legitimate job…You can’t put a price on caregiving. But at the same time, there’s a need to recognise and compensate caregivers for what they’re doing. Because I need to survive too.”
Prashant Pundrik, 52, disagreed with the idea of using taxpayers’ money to pay informal caregivers a wage. “Taxes are usually used for public, not private good,” said the father of twin daughters. Another way of reducing the financial burden on caregivers might be to expand insurance coverage, he said.
In Germany, for instance, an insurance-based, integrated financial payment with access to services would automatically activate allowing care recipients to transfer payments to their caregivers, said Shailey Hingorani, AWARE’s former head of research and advocacy. “Upon receiving payments, caregivers are entitled to four weeks of respite care and contributions to their pension and accident insurance,” she explained.
The government could also start a training academy, suggested Prashant, which would subsidise existing caregivers to become professional caregivers—possibly boosting their earnings and the supply of trained caregivers in society. “At some point in time, everyone is going to be a caregiver,” he said. “Doling out money to caregivers is not a sustainable solution. We should find solutions to generate employment and create a win-win solution for everybody.”
The single father is now the main caregiver to one of his daughters, who has a mental health condition. He wasn’t before. Pre-Covid-19, his other daughter had assumed the caregiving role—she was in the UK with her sibling, albeit at different universities. To equip herself with the necessary skills, she had signed up for a 12-week course at the Caregivers Alliance Limited (CAL), a caregivers peer support group. Prashant said that he didn’t find out about his daughter’s illness until during the pandemic when the twins returned to Singapore and the family were reunited.
Diagnosed with attention-deficit/hyperactivity disorder himself, Prashant acknowledged that he had been a fairly absent father until the Covid-19 lockdown, which forced the family to spend time with each other. He learnt to listen and to consider his daughters’ suggestions as to what was needed from him as a caregiver. The mutual exchange of knowledge democratised their father-daughter dynamic and brought them closer. “I became a better father, a better person,” he said.
Did he direct all his attention to one daughter at the expense of the other? “You involve her in the caregiving and the decision-making…That’s how you try to make the other person feel valued, not isolated,” explained Prashant. “I was lucky that she was grown-up and understood…I wasn’t giving more attention [to her sister] because I liked her more. There was someone in the family who needed help.”
Prashant’s experience with his daughters highlights the significance of considered communication: the tone and manner in which parents engage with their children, especially when one sibling is providing care to the other. Experts have emphasised the importance of acknowledging the child’s role (and possible sacrifices) in the caregiving experience. This, they noted, could make all the difference between the young carer developing empathy and resilience, or ending up with mental health and adjustment issues.
“The amount of support for siblings is almost non-existent around the world,” Tasneem lamented. “If you look at the research, siblings of children with disabilities have a higher risk of criminal activity, depression, PTSD, rebellion and conduct problems. It made me want to do something for the sibling community, to speak out more about my experience.” Today, she volunteers with CAL and the Rainbow Centre.
Support groups are important, she said. Young caregivers need a safe space to talk candidly without judgement: “A lot of us struggle with communicating how we feel to our parents. Something that worked for me, and I wish was available to other siblings, is this concept of a ‘safe adult’, who isn’t your parent.” Tasneem’s teachers and grandmother fulfilled that role for her. “They treated me as my own person and were willing to hear me out.”
Although Tasneem has found it hard to convey the high levels of anxiety and distress that she grappled with growing up, her family’s caregiving journey has strengthened the bond with her father. “It definitely brought me closer to my dad,” she said. “He works in the field of [forensic] psychology…I studied psychology. Every Saturday or Sunday, we’ll have these conversations at breakfast about the sector, about autism. He was the person who encouraged me to step into the field of autism advocacy. That’s one of the big positives that came out of the situation.”
Given the generational shifts in caregiving towards Gen Z, it seems inevitable that carers will experience at least two, if not three caregiver phases in their lives. It would benefit them to have policies and communities in place that cater to their caregiving needs at each point on this long journey, which starts in their most impressionable years.
Having lost his “nenek” since Jom first interviewed him, Iman’s in the midst of a major life transition. The “sense of loss” is palpable; it’s not just about “losing her presence”, he reflected, but also about having to relinquish his role and identity as a caregiver.
“It’s a form of grieving a part of you who has given so much to this person that it has become a part of your identity. When the person is gone, what happens to you?” Iman asked.
This piece can be read in conjunction with our photo essay, “The youthful faces of caregiving”, here.
Tsen-Waye Tay is Jom’s head of content. For this piece, she’s deeply grateful to Cyan Khoo and Tricia Lee from CAL, who were generous with their time and knowledge. They also introduced her to Prashant, Sarah and Tasneem.
Letters in response to this piece can be sent to sudhir@jom.media. All will be considered for publication on our “Letters to the editor” page.
