KUALA LUMPUR, Nov 24 – My grandmother passed away unexpectedly in Mecca, Saudi Arabia, in 2011. A year later, my grandfather had a fall and sustained a spinal injury which led to his admission into hospital.
On his first night of admission, he became seriously ill. My grandfather appeared confused and had problems with his balance and walking before he vomited a black substance that resembled coffee grounds.
A CT scan the next morning revealed he had a stroke and had developed dementia and Parkinson’s disease. Over the next few days, he was in the hospital’s intensive care unit.
One neurologist suggested performing surgery to stop the bleeding in my grandfather’s brain. But, like most older patients, the odds of surviving and recovering from surgery for my then 77-year-old grandfather were slim. Another option was to keep him “comfortable”.
Doctors said there were still chances – albeit small – that the bleeding would stop on its own. After considering both options, the family, with a heavy heart, opted for the latter.
My grandfather remained in hospital for about ten weeks. The medical bill for the whole episode amounted to RM80,000. He was then moved to an extended care facility as my mom and her two siblings worked out a plan to bring my grandfather home.
The family home in Petaling Jaya, Selangor, that was built in the 1960s and designed by my grandfather was not in an ideal condition for home care. Makeshift changes do little to offer the “care he deserved”, my mom would say.
“It was a split-level design where the rooms on the ground floor were elevated. It was not accessible for his condition,” mom recalled. “It would be difficult to manoeuvre his hospital bed, his wheelchair – basically, to cater to his medical needs.”
It was decided between my mom, aunt, and uncle that the home they grew up in had to be replaced with a more conducive house that would facilitate my grandfather’s recovery. “We were still hopeful he would recover at the time. His vital signs were still strong.”
Making It Work For Everyone
The entire process of buying a new house and reconfiguring it to meet my grandfather’s new needs took over a year and a half. Preparations for home care also included the purchase of basic medical items such as a hospital bed, a ripple mattress, a blood pressure monitor, and a pulse oximeter.
The family also had to stock up on disposable underpads, adult diapers, surgical gloves, and feeding formula, which would later add over RM1,500 to the monthly household budget.
Amid preparations at home, care for my bedridden grandfather continued at the extended care facility at an average cost of RM12,000 per month, which covered service fees for doctors and nurses, physiotherapy, in addition to room and board charges.
Eventually, we brought grandpa home. But his chances of recovery now were near zero.
This new care arrangement involved two families living under the same roof, the employment of two domestic helpers, and a 24-hour nurse service.
The additional help meant that everyone in the family could support each other in the caregiving journey with minimal disruption to our daily lives and commitments.
My father continued to work from 9 to 5, my sister and I were in university, my cousin was in college, and my aunt was able to care for her four-year-old preschooler while running her business at home. My mom could also look into my brother’s schooling. He was nine.
For many – mostly for women – caring for our vulnerable elders often means having to choose between caregiving and work.
A study published last year by researchers at the Ministry of Health’s National Institutes of Health found that 61.7 per cent of caregivers in Malaysia were female and that 5.7 per cent of the adult population were informal caregivers – people who provide care for family or friends, usually without payment.
Another study published in 2020 on caregiver burden among informal caregivers to palliative patients, or people living with a serious illness, found that nearly 30 per cent of caregivers had anxiety, while one in four reported symptoms of depression.
Previous studies have linked caregiver burden to being female, spending long hours giving care, social isolation, and having financial constraints.
“[We] must remember that grandpa had all his financials in place, and so, he had the best care anyone could wish for in his condition,” my aunt told me. “There are many families out there who cannot afford the health care [he] received.
“Even home care is financially, physically, and emotionally challenging for many families with physical and mental health ailments.”
To reduce muscle stiffness from his stroke and bed-bound condition, my grandfather’s care regimen also included daily house call physiotherapy. There were also weekly doctor visits every Monday to evaluate his condition and to assess if he was well looked after.
This arrangement went on for nearly two years until our domestic helpers returned home.
“We had to put grandpa back in extended care after that. Without additional helpers at home, there was no one to assist the nurse or to help out with the household chores. Everyone in the family was either working or in school,” mom explained.
“At the extended care facility, there were doctors and nurses available round the clock to monitor his condition and to help with cleaning him up or changing his position – you would need a lot of strength to do that. It’s not a one-person job and it’s something you have to do every two, three hours or so to prevent bedsores.”
My grandfather remained at the extended care facility until his passing in 2016. His total medical costs over four and a half years (2012-2016) accrued to about RM900,000. This RM900,000 amount excludes the purchase and reconfiguration of the new house that was budgeted separately.
“And this is what we call, a satisfactory, comfortable care,” mom said.
Concerns For The Next Generation
If there is a word to describe our family’s caregiving experience is that we were ‘lucky’. “Grandma always said ‘look after each other’ and ‘save for rainy days’. And I’ve always believed that her charitable deeds helped ease our affairs in many different ways,” mom said.
“But there’s no guarantee we will have the same privileges the next time around.”
As inflation persists, everything will get more expensive. High living costs mean there is little to no savings for many, especially for young families and sandwich generations who are already squished between caring for their parents and children.
With more than five million workers turning to their retirement plans for cash due to Covid, many are unprepared for their own retirement, what more to care for their elders.
“Caregiving itself comes with all sorts of physical, emotional, and financial challenges. With jobs being more demanding and living costs being so high, who can take that sort of load? I’m worried that the next generation will have a mental breakdown,” mom said.
As I reflect on my family’s caregiving journey, I can’t help but wonder if I will be as lucky to afford the same level of care for my parents, or even for myself.
Like many young people today, I have no assets other than my six-year-old Proton Iriz to liquidate should the need for emergency cash arise. The high cost of living also does not leave much room for savings, if any. In other words, I am woefully unprepared.
My faith tells me I will manage, somehow. But my balance sheet is less promising.
While the future seems bleak, I am hopeful that broader awareness and interest in health will see proactive policies on aged care and mental health being implemented.
To start, I’m glad that all three major coalitions have made health a priority in their election pledges and have, to some extent, recognised Malaysia’s status as an ageing nation.
Pakatan Harapan’s (PH) 15th general election manifesto titled “Kita Boleh! Harapan GE15 Action Plan” dedicates an entire chapter to reforming caregiving for the elderly via a National Care Economy and Ageing Community Preparedness Plan (SiagaJaga), and another chapter on comfortable retirement.
To a lesser degree, aged care is also featured in Barisan Nasional (BN) and Perikatan Nasional’s (PN) election manifestos. However, details are scant, if not contradictory.
While greater clarity is needed on what BN’s “Elderly Care Act” entails, PN’s proposal to allow another round of withdrawals from the Employees Provident Fund (EPF) poses a problem, instead of a solution, to aged care.
Perak BN’s state manifesto does better by proposing to increase medical funds and expand health insurance for senior citizens in Perak. Still, with no details on where funds will come from, the plan appears to be for the short term.