Plight of the caregivers


Melissa attends to one of her patients.

BEING a caregiver over the past four years has really taken its toll, physically and mentally, on 68-year-old Chan Phui Ying.

She began caring for her mother after the latter fell and broke her thigh bone.

Phui Ying’s mother then became bedridden and since then, she had to rely on others for help in basic needs like bathing, taking bathroom breaks and having meals.

Before the incident, Phui Ying was a hawker – her siblings had full-time jobs and some were living outside Sarawak.

“In the early stage, my mother was still full of pride – she insisted on going to the bathroom by herself, but still needed help to be carried there.

“It was a back-breaking task for me to do it alone. As she became more and more immobile, she began complaining about having a sore back, as a result of sitting and lying down for long hours.

“She would nag constantly, complaining of discomfort and her grumpiness did annoy those around her, but I had put up with it… She’s my mother and I loved her,” Phui Ying told thesundaypost in Miri.

The drastic change of character in her mother became even more intimidating last year, gradually putting more strain on her.

“I knew my siblings had to work, therefore it would be impossible to get them come by often to help out, but having them around from time to time did help a lot.”

Going in and out of hospital had become part of Phui Ying’s routine, but that by itself had not been a pleasant experience as despite her mother being in so much pain, the doctors at the time were still unable to provide the most accurate diagnosis.

“Geriatric illness can be complicated. While we’re worried about her health, the hospital bills scared us even more. We’re worried about not being able to settle the bills.

“That said, the option of hiring a private nurse on night shift was out of the question – for the nurse’s service from 8pm to 5am, the fee was over RM5,000 per month!

“The Covid-19 pandemic badly affected the incomes of my siblings, so it’s not ideal to spend money in exchange for just a good few hours of sleep at night. There were other expenses that must be covered too, such as adult diapers, lotion, formulated milk and food, which amounted to a few thousands of ringgit per month.

“We did survey some nursing homes in Miri, but my mother rejected the idea – she told us that she’d rather die than be sent there,” said Phui Ying, whose mother passed away in February this year.

In her final moment, she called out Phui Ying’s name, which she was not able to do when she was bedridden, and thanked Phui Ying for everything.

‘Many ups and downs’

“There were many ups and downs; there were times when I scolded my mother out of frustration, then I realised it was just her being lonely and in need of companionship,” said Phui Ying.

“Being my mother’s caregiver for several years taught me the importance of time and patience.

“That experience made me understand the Chinese saying: ‘There are no filial children by the sickbed for the long haul’.

“It’s a brutal reality that could happen to anyone, and caregiving could affect a family if not handled carefully. Negligence could happen.”

Phui Ying says being her mother’s caregiver for several years has taught her the importance of time and patience.

Phui Ying earlier believed that she had done her best, but the mixed feelings of guilt, anger and sadness began to slowly build up in her after her mother’s passing, leading her to think if there was anything that she could have done differently to help her mother.

“I knew I needed time to relieve those feelings.”

The lack of help and support from the government and the community, she felt, had forced many key family caregivers to choose between making a living and caring for a family member with long-term illnesses full time.

Even more unfortunate, she said, was that whatever choice was made, the burden of blame would still fall on the caregiver.

“Being a family’s breadwinner is hard enough, especially when the economy is bad; the lack of resources causes many people struggling to make ends meet.

“Caring for sick or elderly family members could be the final straw that breaks a caregiver’s spirit.”

‘Tough decisions’

Haniyah Sidi took up the role as her mother’s sole caregiver after the latter was diagnosed with rectal adenocarcinoma (rectal cancer) in November last year.

Little did she realise that the task was going to be far more challenging than anything that she had ever expected.

She has to deal not only with the financial challenges of purchasing expensive medical supplies, but also the stress from dealing with her mother’s behavior.

(From left) Haniyah with her mother, during home visit by Melissa.

“Before the diagnosis, my mother was already a bit senile; her behaviour’s a bit child-like.

“After the diagnosis, we made some decisions in her best interest, which included her undergoing colostomy and having a stoma bag installed.

“She still does not fully understand what’s happening to her health. The itchiness at the stoma bag’s opening and the dry skin are just too much for her; many times, she would just rip open the stoma bag just to relief that itchy feeling, and this resulted in the faeces collected in the bag to be scattered all over the floor,” said the 61-year-old.

This and the lack of sleep have forced Haniyah to have her mother strapped at certain times.

“It always breaks my heart to do this, especially seeing her confused and cry for help whenever we restrain her hands to the bed – the guilt is real.

“Not many could understand this,” she told thesundaypost.

Haniyah quit from her office job last year, and has since devoted her time looking after her mother. Her siblings are unable to help much – one of them also has cancer, while the others are living outside Sarawak.

Nevertheless, she would get the much-needed break once in a while.

“My daughter helps out when I need relief time for a couple of hours.

“I also appreciate my ex-colleagues’ companionship too.”

However, Haniyah’s current situation worries her.

She has to restock the expensive medical items every month. Her own savings and retirement fund are just enough to cover her own livelihood.

“The bills are stressing her out, and I cannot get any help because I’m not qualified as B40 (low-income earners).

“I have relatives helping out by giving some supplies, but having to spend at least a few hundreds of ringgit for medical supplies is burdensome,” she said, hoping that the government’s red tapes could be removed so that more people like her could receive help.

Currently, Haniyah’s mother receives regular visits from the nurses of the Palliative Care Association of Miri (PCAM).

‘Keeping one’s mental, emotional health in check’

Emotional attachment is among the challenges that any palliative care nurse has to deal with.

“Unlike those working in a typical hospital or clinic, where the environment is pretty much under control, a palliative nurse needs to do home visitations to attend to patients under palliative care.

“Often times, the home environment is pretty raw, because patients tend to show their truest emotions when communicating with the family caregivers.

Apart from providing medical support, the palliative team members also conduct constant checks on the caregivers’ mental health to ensure that they are able to get help whenever it is needed.

“Tensions do happen frequently between the patient and the family, even during a home visitation.

“I witnessed many, including one that I will never forget.

“It was an elderly man who hid his cancer diagnosis from his wife of over 30 years, thinking that she might not be able to handle the truth.

“He was in constant pain as the medication could no longer provide relief; he kept throwing tantrums. It was dreadful seeing two people who used to be so close, torn apart by an illness.

“Nothing could mediate such a situation easily, but having a good support network could help relieve the stress and the tension,” said Melissa Desmond Reynold, who has been a palliative nurse for 10 years now.

PCAM palliative nurses seen during a home visit, with the patient’s caregiver present.

Melissa was scouted by PCAM’s former president Dr Loh Yunn Hua, to help patients under the association’s care in Miri.

Adding on, Melissa said quite a number of nurses resigned because they could not cope with the emotional stress – some broke down after the patients whom they had attended to, passed away.

“They were palliative patients who outlived the doctors’ prediction of how many years they had left to live, and we became friends.

“When they passed away, it affected us too.”

According to Melissa, PCAM is facing severe shortage of manpower, especially volunteers.

“A 30-minute home visit could extend to one hour or longer whenever we notice that the patient or the caregiver needs more help like cleaning the house.

“We help out because it is in our conscience to do so. It would be great to have more volunteers with us, though; they could help mediate whatever the situation is during a home visit.”

Currently, PCAM is only able to accommodate cancer-related palliative cases – the non-cancer cases would have to be referred to other relevant agencies or non-governmental organisations (NGOs).

‘Getting self-care is not being selfish’

Caregivers are allowed to have time for self-care and they must never feel guilty about it, said Jacqueline Buri, a counsellor and vice-president of PCAM.

“Take a walk, have a cup of coffee, talk to a friend, get a massage, or even enjoy a movie time for a couple of hours – it’s not too much and nobody must feel guilty about it.

“It is not unusual when a caregiver experiences difficulties in sleeping, anger, stress and anxiousness. What’s important is that they must learn to ask for help when help is needed.

“It is a common scenario where they’d feel guilty if they were to ask for help, but they must understand that when situation becomes too overwhelming, they would need others to step in,” Jacqueline told thesundaypost.

Jacqueline says a caregiver is allowed to have time for self-care and one must never feel guilty about it.

Learning to say ‘no’ when a task becomes too much for them, is allowed too.

“Set your own priority right,” said Jacqueline.

“Drawing the boundaries is crucial because when other family members demand too much from the caregiver, burnout and anxiety would be the results of them being pushed too far.

“In fact, a caregiver doesn’t necessarily or only refer to a person caring for a sick or elderly person; they can be anyone who cares for others, like a parent.”

A volunteer for PCAM for over 18 years, Jacqueline stressed that self-care must not be seen as ‘being selfish’.

“Charge and recharge will allow you to reset yourself, to become a better version of yourself.”

She also suggested any caregiver to allow themselves time to grieve after their loved ones had passed on.

“Validate your emotions, give yourself time to cry, embrace memories, and then, move on.

“It is not ideal to stop there for too long, because grief can turn into depression.”

Jacqueline also said the people surrounding a caregiver could provide companionship.

“Upon noticing any unusual behaviour, lending an ear or a shoulder to cry on can help a lot,” she added.