Senior Citizens Bill: Family Caregivers Shed Light On Issues Plaguing Elderly Care

Family caregivers speak about abuse by carers (both hired and family members), balancing work, and providing care. Costs associated with domestic helpers and elderly homes can easily reach at least RM4,000 per month.

KUALA LUMPUR, May 3 – In early 2022, Mrs Maria (pseudonym) was forcibly admitted to an elderly home in Petaling Jaya, Selangor, despite expressing her desire to remain in her own home.

She had spent her entire married life as a homemaker, and at the time, was dealing with mild to moderate stage dementia – a stage where cognitive decline and memory loss have progressed beyond what is considered normal ageing. Her family, including her children and in-laws, made the inequitable decision to move her to the care facility.

Mrs Maria’s condition was in part exacerbated by Covid-19 lockdowns in 2020 and the lack of support from her family. Her family did not fully understand her needs as a person living with dementia and failed to provide the necessary support she required as a mother and senior member in the family, including financial assistance for bills, household expenses, and regular “pocket money”.

Despite her struggles with dementia, Mrs Maria would drive herself to her children’s home, located some 10 minutes away, for meals or a place to stay overnight due to her fear of being alone at night, said Lina (pseudonym), Mrs Maria’s daughter, who works overseas.

In the initial stages of Mrs Maria’s admission to the elderly home and her subsequent one-week stay in a psychiatric ward without a recommendation letter from a doctor or geriatrician, Lina and some of Mrs Maria’s friends, were unable to locate her.

“I only found out through one of my mother’s friends that my sibling and her spouse had secretly sent her to a private old folks’ home, but we didn’t know which one. One of her former neighbours tried to find out from my mother’s in-laws, but to no avail. Some of her friends tried to reach her earlier, but couldn’t. 

“She has been practically cut off from society since early 2022, which has made it difficult for her to return to her own house and remember where she lives,” said Lina when contacted by CodeBlue recently. CodeBlue had issued a public call for Malaysians to share their views about the government’s proposed Senior Citizens Bill, to which Lina responded.

According to Lina, her sister, Anita, only informed her that Mrs Maria had been admitted to the hospital for observation in early 2022, after Mrs Maria became unreachable. Her other sibling, Liza, did not provide any information when questioned about their mother’s situation.

In February 2022, Lina said someone recognised Mrs Maria in one of the private elderly residences in Petaling Jaya and witnessed her being forcefully carried into the building, despite her resistance and protests of “I don’t want”.

When confronted about Mrs Maria’s move to an elderly home, Anita accused Mrs Maria of attempting to harm Liza and had physically assaulted Anita, which Lina believes to be false.

Lina shared that her mother’s admission to the elderly home followed a series of concerning incidents within the family. In early 2021, Mrs Maria was escorted by police for overnight observation at a hospital after her son-in-law made a call to report her behaviour. 

This occurred after her daughter Anita refused to return her mother’s identity card, causing significant distress for Mrs Maria. Lina learned of this upsetting episode from her mother’s account, as her sister Anita had not shared this information with her.

Less than two months before her admission to the elderly home, Mrs Maria was living with Lina in a rented room abroad. Lina had a job at the time and had taken in her mother after discovering that Mrs Maria was being neglected by her other children in Malaysia.

According to Lina, Mrs Maria was not receiving the meals that were expected to be delivered by her children back in Kuala Lumpur. In some cases, Lina claimed that although one of her siblings would deliver lunch, she often left the meal at the window without ensuring that Mrs Maria had received it or had eaten her meal.

In addition, Mrs Maria was still required to drive to her children’s homes before evening for overnight stays on a rotating basis, while during the day she had to return to her own home and be alone.

Whenever Lina was in town, her siblings would cut all communications with their mother, leaving Lina to take care of their mother on her own. “Every time my mother tried to call them, they wouldn’t answer her calls or call back, especially Liza. Anita kept diverting the conversation, saying she was very busy,” Lina said.

But life as a sole caregiver proved to be a challenge for Lina, who is single, especially as imported domestic helpers were banned in Malaysia for two years during the Covid-19 pandemic, and there was a lack of local support for caring for the elderly. 

In addition, Lina had to cope with staying in a rented room with restrictions, shouldering the physical and financial care of her mother without any support from her family, and balancing work demands and pressures.

With job uncertainty and being the only income provider, Lina eventually had to have Mrs Maria sent back home. Lina was unable to return to Kuala Lumpur at the time as she still needed to work. 

“This is a very common situation in Malaysia where siblings tend to pass on the responsibility of caring or financial support to their other siblings, particularly those who are not married, with the perception that singles have no worries or commitments, which is far from true,” Lina said. 

“They do not even consider that, when a person is single and grows older, their financial resources may be depleted and they may have to shoulder the burden alone without anyone to provide for them financially.”

In 2022, Lina made a brief return to Kuala Lumpur to check on her mother. With the help of some friends, she decided to track down her mother’s location by posing as church visitors or parcel delivery personnel to find out the exact home her mother was in. “We didn’t know which home she was in as there were a few under the same company.”

After successfully identifying the home, Lina discovered that the private elderly care facility that Mrs Maria was in did not allow visitors, including her mother’s next-of-kin, as per her sibling’s instruction.

“Private elderly care facilities are afraid of losing clients. They listen to whoever is admitting the elderly person. They do not care if the person who is admitting the elderly individual is truly the person’s child, next-of-kin, or an imposter. As long as the person provides payment and claims guardianship or representation, the elderly person is admitted.

“Once the elderly person is admitted, they cannot leave the facility compound. It is like being locked in prison,” said Lina. Despite the visitation ban, Lina managed to find a way through one of the home’s staff to visit her mother discreetly.

However, it did not take long for her sibling to discover the secret visits and subsequently moved Mrs Maria to another private elderly care facility, this time run by Filipinos. “That one is even stricter. They do not allow you to see or talk to her at all,” said Lina. “I have not seen her since June (last year) until now.”

Lina also found out that her other sibling, Liza, had made withdrawals from their mother’s savings in a joint bank account.

“I noticed that there were withdrawals made from my mother’s account. The bank claimed that my mother applied for an ATM card and withdrew the money, but my mother has never had an ATM card. She doesn’t even know how to use an ATM machine,” said Lina.

Lina attempted to seek legal assistance but was met with disappointment. Despite having video evidence of her mother being forced into an elderly care facility, a counsel at a public law firm told her that there was a lack of intent to pursue legal action.

“The lawyer said if things were 50-50 and could not guarantee a win, they would not do it. They would not help,” Lina said. The lawyer recommended that Lina reach out to a private lawyer instead. 

Lina then sought assistance from a private law firm, and was informed that her case would need to be brought to the High Court, with a minimum fee of RM10,000.

“After a few months, I inquired about the next steps, and the response was along the lines of ‘see what you want to do, lah, see what the next step is.’ It seemed like a never-ending process,” Lina said. “It felt like they were taking advantage of vulnerable people, and I don’t think it’s right.”

Mrs Maria’s dementia progressed rapidly after her forced admissions to two different old folks’ homes, according to Lina. During their last meeting, Mrs Maria had forgotten both her home address and phone number, which Lina noted as the “two things she never forgets”.

Key Provisions The Senior Citizens Bill Must Consider

Picture by truthseeker08/Pixabay.

Last month, when Prime Minister Anwar Ibrahim’s coalition government announced plans to introduce a Senior Citizens Bill in Parliament, Lina drew on her personal experiences to identify some key provisions that would help safeguard vulnerable elders, especially those who are no longer mentally capable due to conditions such as dementia or stroke.

Citing Singapore as an example, Lina highlighted the need to provide legal representation to senior citizens, particularly those who are mentally incapable, to enable them to seek financial compensation or allowances from their well-to-do children to receive proper care. 

She also underlined the importance of having a good network of social workers, like the home care services provided by Singapore’s Agency for Integrated Care (AIC), who can provide emotional and physical support to the elderly through home visits, mitigate feelings of social isolation, and help them appeal for aid from various bodies.

Lina said during a stakeholder engagement for the Health White Paper held last year, examples from Singapore’s elderly care support system such as the AIC, were raised.

Malaysia should also follow Singapore’s example of offering subsidies to Singapore’s elderly citizens for long-term elderly care services, which include nursing home services, inpatient hospice palliative care services, and psychiatric rehabilitation homes. 

For instance, Singapore offers a much lower levy of SGD60 (about RM200) per month for a foreign domestic helper, compared to the standard levy of SGD300 per month. Singapore also provides tax relief of SGD9,000 for elderly citizens who are healthy, and a tax relief of SGD14,000 for elderly citizens with disabilities, Lina said.

“If you’re familiar with the Malaysian market, it’s easy to find elderly care facilities that charge over RM3,000 or RM4,000. Some charge as high as RM6,000, which is very expensive.

“And if you’re talking about daycare for mentally challenged individuals, such as those with dementia, they often hire foreign workers because Malaysians don’t want to do these kinds of jobs. The cost of hiring a worker for daycare is at least RM4,000 or RM4,500 and above.

“So, even middle-income households earning RM8,000 or RM10,000 per month, will not be able to afford these services because at that income bracket, your tax rate makes up a significant portion of your earnings,” Lina said.

Lina explained that financial care for the elderly goes beyond daily living expenses and covers other basic needs such as adult diapers, supplements, and healthy foods that can help slow down cognitive decline. “You will also need a wheelchair and some other equipment to help carry the elderly as they will eventually be bedridden.”

Medical expenses, including specialist fees and medication, as well as regular follow-ups with geriatricians, are also part of this care.

Lina shared a troubling experience in Malaysia where she was overcharged twice by the same private geriatrician without any clear explanation or justification. 

In addition to being charged the maximum consultation fee, Lina was charged a few hundred extra ringgit in “education fee”, resulting in a total cost of almost RM1,000 without being prescribed any medication for dementia – such as Memantine, Rivastigmine or Exelon – that could help slow her mother’s cognitive decline.

Malaysia’s Senior Citizens Bill should also include laws that govern old folks’ homes and elderly care centres, Lina said. Admissions into any type of elderly care or psychiatric facility should require a doctor’s letter. 

These facilities should also be regulated to ensure that the level of care provided meets international standards and that visitation rights of the elderly’s next-of-kin are not unjustly blocked.

Lina said the government should also make it mandatory for guardians to have power of attorney, particularly for elderly individuals who are no longer mentally capable.

“In Singapore, they have a system where a geriatric doctor certifies a trusted individual to become a guardian for an Alzheimer’s patient – someone the patient trusts. 

“This guardian is responsible for taking care of the patient, but not necessarily shouldering all financial burdens. Rather, they act on behalf of the patient and manage their finances and other matters,” Lina said.

Caring For The Elderly A Monumental Task

Picture by belajatiraihanfahrizi/Pixabay.

While specifics of the Senior Citizens Bill proposed by the government remain undisclosed, Deputy Minister of Women, Family and Community Development (KPWKM) Aiman Athirah Sabu has indicated that the legislation, expected to be introduced next year, may include penalties for individuals who send their elderly parents to care facilities or retirement homes.

For Dr Ashaari Imran Azman Shah, who has been involved in aged care in England in the last few years, he said the government first needs to recognise that looking after the elderly or providing geriatric care is “very hard”, even with proper training.

“I think the government should be looking seriously at what kind of planning they have. Looking after elderly parents is very hard. It is a skill. Are we looking at training our health care staff around the subtleties of geriatric care? 

“At present, I would suggest that this training is almost non-existent, certainly when I was doing housemanship training which was 2014-2016. Even with good training, there is a considerable amount of abuse of the elderly, both by health care workers in care homes and by children or close relatives. As we know, abuse is often perpetrated by those known to the victim.

“We need to consider the concept of ‘safeguarding for adults’ since abuse of the elderly can take different forms such as coercive control, financial abuse, neglect, sexual abuse, and physical abuse,” Dr Ashaari Imran told CodeBlue.

He further explained that as life expectancy increases, the children of ageing parents are also growing older, which can make providing physical care for their parents more challenging.

“For example, if your parents live until they are 80, 90, or even older, their children may already have their own health, back, joint problems by the time they are in their 60s. This can make it difficult in practice to care for ageing parents,” Dr Ashaari Imran said.

Dr Ashaari Imran also pointed out that due to the increasing level of brain drain and the tendency for people to work far away from their parents, it is becoming more common for children to live thousands of kilometres away from their ageing parents.

“Most people work away from parents now, and with increasing brain drain, children may literally be thousands of kilometres away – like myself.

“This situation makes it impractical to enforce fines or other penalties, as children who work in Malaysia will be unfairly penalised over those who work abroad,” Dr Ashaari Imran said.

Different People, Different Circumstances

Picture by Andrzej Rembowski/Pixabay.

Foong CK, who is 70 years old, shared Dr Ashaari Imran’s concern on whether politicians understand the reasons why some adult children choose to place their elderly parents in care homes.

“As you are aware, our population is classified under B40, M40 and T20 groups,” Foong told CodeBlue. He said typically households in the bottom 40 per cent (B40) income bracket will not be able to afford to send their elderly parents to care homes.

“This is because they are already struggling to make ends meet on their meagre monthly income and therefore cannot afford to spend a minimum of RM1,000 per month to send each of their parents to care homes. Hence, this category of population will not likely send their elderly parents to care homes,” said Foong, a Petaling Jaya resident.

Among the middle 40 per cent (M40) income group, those who can afford it are likely to send their elderly parents to care homes so that they can continue working to earn a living.

“This group of population generally comprises middle-income wage earners or self-employed individuals. They have to work from 8.00am to 6.00pm daily to earn a living and therefore have no time to look after elderly parents, especially parents who are immobile, sick, or simply unable to function on their own. 

“For those who can afford it, they have no option but to send their elderly parents to care homes so they can work to earn a living. For those who cannot afford it, they will have to manage the best they can, even to the extent of leaving their elderly parents with friends or relatives,” Foong said.

When it comes to those in the top 20 percent (T20) income bracket, while they logically should have the means to care for their elderly parents in their own homes, the reality is that many do not. This is particularly true for non-Bumiputeras, as their children often have to go abroad to pursue tertiary education.

“This is because their children could not gain admission into local public universities, even though they had excellent results in their SPM or STPM examinations. The reason, of course, is due to discrimination and the quota system for admission to local public universities. 

“When these children graduate from overseas universities, the majority of them find employment in foreign countries and do not return to Malaysia. Hence, they are forced to send their elderly parents to care homes while they settle down abroad. 

“One may ask why not force these children to return to Malaysia? The simple answer is that it would be financially unfavourable or unviable for them to return. 

“Their parents had spent anywhere between RM800,000 to RM1 million to send them overseas to pursue tertiary education. If they return to Malaysia after graduation, engineers will earn RM4,000 per month, if they are lucky. 

“At this income level, it will take 17 years to save RM800,000 (assuming they do not spend a single cent of their monthly income) just to earn back the money that their parents had spent on their overseas education,” Foong said.

“As a matter of fact, all my friends who had sent their children overseas for tertiary education had asked their children not to return to Malaysia after graduation.”

Given the different circumstances, Foong disagrees with the proposed Bill to penalise adults who send their elderly parents to care homes.

“I think the Malaysian government should first study and understand why some adults send their elderly parents to care homes before introducing a bill to penalise them,” Foong said.

“The current situation, where adults can afford to send their elderly parents to care homes, is partly caused by the government’s education policy. If a Bill is necessary, it should only apply to adults who are capable of taking care of their elderly parents at home while also being able to work to earn a living,” he added.

Foong drew from his personal experience and shared that during the final six months of his mother’s life, she was in and out of the hospital regularly.

“I had to put her in a nursing home for the last three months before she passed on because it was just impossible for my wife and I to provide her with the level of nursing care that she needed such as inserting a urinary catheter, drips, injections, and changing of diapers. 

“To make matters worse, because of her condition, she was very frustrated and became abusive towards me when I denied her hawker food for fear of her getting food poisoning and contract diarrhoea. It was extremely difficult to manage her at home. 

“Eventually, I had no choice but to send her to a nursing home. However, I visited her every day to assure her that she was not abandoned,” Foong said.

Foong stressed that any bill aimed at penalising adults for sending their elderly parents to care homes must take into account prevailing circumstances. “Otherwise, the adults will be unnecessarily burdened with having to pay a penalty in addition to paying the costs to care for their elderly parents.”

Making Aged Care Facilities Accessible For Everyone

In 2016, HK Tan and his siblings had to make the difficult decision to place their paralysed mother, who suffered a massive stroke, in a nursing home.

“She was bedridden and couldn’t speak. She was fed through a feeding tube and required a urinary catheter inserted regularly. We were then all still working and would have needed to hire a maid trained as a nurse to take care of her if we were to take care of her,” said Tan, a 65-year-old resident in Bandar Utama.

Fortunately, Tan’s family found a nursing home that provided excellent care for his mother. “In the three years that my mum was there, she was taken care of very well by the trained nurses. I feel that she was better cared for at the nursing home. We never abandoned her at the nursing home as at least one of us would visit her daily,” Tan said.

Tan emphasised the importance of having aged care and nursing home facilities available, accessible, and affordable for everyone, as everyone may eventually need them.

“A wheelchair bound man was an MBPJ (Petaling Jaya City Council) councillor. He passed away recently. During his time as a councillor, he championed the need for wheelchair accessibility in public areas. I like what he told the other councillors about having wheelchair accessibility. 

“He told them, ‘One day, all of us will be invalid, the only difference is the degree of invalidity. So, having this wheelchair accessibility will help everyone eventually’. It is the same with age care and nursing home facilities – all of us may need it one day. 

“Instead [of enforcing penalties], the government should look into how to make these facilities more available, accessible and affordable,” Tan said.

“Everyone has different circumstances, and some will require such facilities to care for their aged parents. I guess the challenge is to ensure that children don’t abandon their parents at aged care and nursing homes, or ‘get rid’ of a problem by sending their parents to such facilities.”

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