Happy Ketua Rumah’s Day: The unexpected rise of young caregivers in times of MCO
by Hidayah Hisham
Like most people celebrating Mother’s Day in MCO this year, my mother and I spent an entire evening at home together doing cognitive memory exercises.
Just a couple of months ago, my mother was recently diagnosed with onset dementia and clinical depression at the age of 57, and her degrees of cognitive declination varied from day to day - while she can play level 500 of Candy Crush, she can barely remember where the switch to the lights are in the home she has stayed in for 12 years. There are days where she can recall an entire plotline of a movie she saw a while ago - but there are also days she can’t fully remember my late dad’s name.
Up until her diagnosis, my sister and I had already assumed responsibilities of managing the household and family matters - from sorting the bills to scheduling her meals, we mitigated the responsibilities and schedules between us to make sure that with either both of us having school and work each - mom wouldn’t be alone at home for long periods of time. We were just gaining some form of momentum in balancing school and work while dealing with mom, and then the Movement Controlled Order happened.
The challenges of being a new caregiver while navigating the new rules of MCO were unique, all plans for medical treatment and doctor appointments had taken a stall – I was forced to look for other resources in treating my mother’s symptoms. The medical routine was fairly simple to figure out with some hours of research, but finding ways to split my new hours of working from home while managing my mother’s care had required more effort. I was shoved to adapt to new situations on top of strange situations while navigating through a thick fog of uncertainty and doubt that was the pandemic.
It wasn’t until the second week of MCO it was announced ‘Ketua Rumah’ were only allowed to run these errands. When it came to breaking down what this meant for managing household duties during MCO, social media users brought up concerns and doubts. I found one Reddit thread dedicated to the general confusion of Malaysians when it came to the term; one user aptly named Gadget Hater pointed out, “Usually the adults would be ketua rumah. How can this be confusing tho?”.
Everyone else on social media was quick to quip about unsuspecting fathers in grocery runs - TESCO Malaysia was quick to make guidelines for befuddled fathers/husbands to aid them with their grocery conquests. Initially, I scoffed at the sexism - and then I was ultimately disheartened.
By loose definition, I was a Ketua Rumah too - long before MCO took place. I hadn’t been one to care for semantics, but I felt like a minority in a sea of full-formed male adults running errands for their families. However, I was also glad to know that I wasn’t the only one.
“It’s this unspoken fear that drives my responsibility.”
Young caregivers: an unrecognized community
Although considered to be a hidden subgroup within the community, the possibility of shouldering caregiving responsibilities under the age of 25 is now more likely than ever. Retrospectively, this is due to the demographic transition in developed Asian countries such as Singapore and Malaysia - where the aging population of 60 and above is predicted to outnumber age groups of five years and below by 0.6% in 2020. Consequently, as the aging population grows - their children are expected to start their caregiving journey at a much younger age.
Nazierah, 23-year-old junior marketing from KL is one of these children. While she had just started her employment at a marketing firm a little over a year ago, she had long been tending to both of her parents’ medical conditions since her high school years.
“It’s this unspoken fear that drives my responsibility,” Nazierah admitted to me over a video call we had. “Because their medical conditions advance with their age, I’m in constant fear of losing them.”
When MCO hit, it was another dilemma for Nazierah. As both parents were elderly and marked with high risks of contracting COVID, she had to take precautions when it came to bringing them to hospital visits and picking up medicines.
“It feels like a double-edged sword.” She lamented, “I’m risking both my life and theirs when we go to the hospital for medical check-ups, but it’s the only way.”
Similarly, Atiqa, 27, a paralegal from Seremban also faced this predicament. Raised by her grandmother, she had been aware as early as her middle school years about the potential health struggles her grandmother would face as she grew older. Whether it’s sorting out her grandmother’s pension applications to treating her osteoarthritis, Atiqah had taken up the mantle in sorting out her grandmother’s care right until her graduation from law school in 2016.
As the years went by, Atiqa became more confident and assured as her grandmother had moved in with an uncle in Ipoh - until MCO happened. On the day of the announcement, Atiqa had rushed back to Ipoh after work to pick her grandmother up and brought her back to Atiqa’s home in Seremban.
“I couldn’t risk the chances of not being able to be there for her when she needs me,” she said. At least in Seremban, she could keep an eye on her grandmother’s medical needs and still be close to her job.
“I just had a gut feeling that MCO was going to get in the way of my usual care routine for her,” she added. Her anxieties were assured when the banning of interstate travelling had been imposed for 3 months.
Young, ambitious, and financially insecure
Combined with MCO anxiety, young family caregivers like Atiqa and Nazierah are at higher risk of burnout and depression from the stress of juggling both roles as caregiver and employee. While working from home has allowed them to spend more time with their respective care recipients, managing their workload and personal boundaries in a new setting are emotionally distressing. Additionally, these feelings can also be exacerbated by financial insecurities brought upon by the pandemic.
According to Gentwenty, a self-care online portal for twenty-somethings, the process of managing medical-related and insurance costs for the care recipient would require financial information and aid – resources a twenty-year-old caregiver would be required to attain before being considered capable of caregiving responsibility by medical professionals. Ultimately, this puts a bigger strain on dealing with the quality of care their dependents would receive – something that greatly concerns most caregivers.
On top of attempting to achieve some form of financial credibility to ensure proper care, this is especially more burdensome for young professionals who have just started to embark on their employment journey in a post-pandemic world. As Malaysia and the rest of the world takes a nosedive in an economic crisis, the looming threat of unemployment affects young professionals in varying degrees of fear and insecurity, especially those who have dependents. Having just started employment while caregiving sick family members, UK data supports that financial stress among young caregivers are valid as they are more likely to face poverty in comparison to their peers.
Before anyone can say “But there’s Bantuan Sara Hidup tho?”, the existing financial aid in place solely recognizes the struggles faced by B40 groups. Contradictorily, these financial aids don’t take into account different expenditures in most households. Nazierah and Atiqa, although making RM 3000 above, spend more than they earn when they have medical expenditures added to their monthly spendings. The lack of effort by the government in recognizing unique socioeconomic situations such as these questions our visibility.
I have to keep convincing [my mother] that I’m fit for a role that I’m barely ready for.
The shift in child-parent dynamic is another complicating factor. While managing my mother’s anxiety with MCO, I have to keep convincing her that I’m fit for a role that I’m barely ready for, as she keeps insisting on running her errands on her own. When describing these transitions, Atiqa and Nazierah also pointed out another similar feeling - insecurity. Normally illustrated as male and financially secure, the notion of being recognized as a Ketua Rumah while having none of those qualities feels like a massive displacement in an already unprecedented situation of taking over your parent’s role in the middle of a global health crisis.
Taking charge has been the biggest anxiety for me coming into this introductory chapter of caregiving and MCO, convincing my mother and other adults that I can cope with this has been an uphill battle. I’m not even entirely convinced I’m qualified to be Ketua Rumah anyway. I’m only here because the situation calls for it, and I have clumsily rose to the occasion the best I can.
“I’m not cancelling anything. They’re just on hold for now.”
Self-care while giving care
Being a caregiver at a young age is already a challenge without the MCO. While the pandemic already puts a lot of career and personal ambitions on hold, young caregivers still fear over the possibility of missing out on the opportunity of growing up and chasing after their goals.
“I was stuck with a dilemma,” Nazierah told me. “On one hand, I know that getting some form of recognition at work requires longer hours - but then, I can’t fully dedicate my energy and time to building my career when I have to also take care of both of my parents.”
Likewise for Atiqa, she finds that while caring for her grandmother had been her utmost priority growing up - she still had ambitions of working abroad.
“I’m not cancelling anything,” Atiqa affirmed when asked if she still carried these plans despite her caregiving commitments and MCO. “They’re just on hold for now, I’m still young and there’s still time.”
Additionally, both Atiqa and Nazierah emphasized on one key thing when it comes to caregiving – self-care. While carrying out caregiving duties requires a substantial chunk of one’s time and attention in dedicating to others, accomplishing your personal needs and wants are just as important and attainable. Caring is already a delicate profession, especially in times of isolation when it requires even more love and patience, not just on the ones we’re caring for, but on ourselves too. Thus, support systems are vital in lessening the emotional and physical burden of carrying these responsibilities, in which reaching out to members outside the family such as friends or support groups can help regain a sense of personal space.
For me, I found that staying home has personally helped with understanding my mother’s illness – we spend more time together, taking walks around the neighbourhood and doing daily memory exercises in between my work breaks to give her back some grasp of reality. As much as I can help her with tending to her medical needs, being there for her emotionally has helped her even more – and this would not be the case if it wasn’t for MCO.
If there’s one thing I wished I realized sooner when I first started this caregiving journey, it’s the fact that I’m not always alone in this. And I would like to reiterate this to anyone else who feels the grief and emotional burden in the profession of caring in the middle of a crisis – you’re never alone in this, at least not entirely.
This article was written a year ago, when the first MCO was called. Things are still the same - cases are ever rising, MCO 3.0 was just announced a day ago. So this year, I will be celebrating Mother's Day at home, again. A year later, the whole ketua rumah furor seems like an out-of-place interlude in a rather long, dark piece of music; but for many, like washing our hands and wearing our masks, it has become a mainstay, hasn't it?
I only hope it has become easier. Happy Ketua Rumah's Day to all of you.
In the scheme of life for young people, wills are really not of the top of the list. Simply because we have so many other things to worry about, from bills to simply generating income.