Covid-19 Caretakers’ Fatigue: When Caretaking Crushes Family Members

By Chan Xin Ying

September 2022 FEATURE
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AT THE PEAK of the health crisis, the news media were saturated with reports about medical professionals suffering from burnout and compassionate fatigue. The plight of family members of Covid-19 patients tasked to look after their infected loved ones remain outside the radar screen.

Worn out from caretaking demands, financial worries and emotional exhaustion, such caretakers soon find themselves crumbling under tremendous physical and mental stress.

When Covid-19 infections peaked in mid-2021, the health system experienced a breakdown, mainly in the form of a shortage of hospital beds and insufficient medical facilities. Patients who were turned away from hospitals were forced to quarantine at home and family members became their de facto caretakers.

Ee Ling, the daughter of a 76-year-old Covid-19 patient, recalls being at a loss for what to do at the time. There were no clearly stated procedures for taking care of a Covid-19 patient and it took her time and effort to obtain the information herself.

“The hotline was always occupied and sometimes they would point me to other departments. Luckily, I have a friend in the medical industry who eventually provided me with the relevant information. But I cannot imagine the fear and confusion those who don’t have anyone must’ve felt.”

Ee Ling and family reunited with her father after his recovery.

Ain Suraya, who was also the main caretaker of her Covid-positive father echoes Ee Ling’s sentiment—insufficient experience and knowledge regarding the disease had made the process more stressful than it needed to be. She added that Covid-19 symptoms vary among patients and some of the after-effects may last up to months, compounding the effort required in caregiving.

“It’s difficult when everything is so uncertain. While we know what Covid-19 is, we don’t necessarily know what to do when someone in our house is infected. My dad also suffered from long-lasting side effects and still couldn’t eat and was very weak three months after being discharged. I became very paranoid at any slight change in his condition; I can’t help worrying about him getting worse.”

The Country Manager of Homage Malaysia, PC Gan, points out the difference between professional caretakers and caretakers who are family members: caretaking, especially nursing care, is a set of skills performed by a professional. When undertaken by family members who are not professionally trained, it could be dangerous for both the patient and the caretaker.

“For example, when physically moving a bedridden patient, someone without skill and who does not know how to handle the weight of the patient might expose both themselves and the patient to danger.”

PC Gan, Country Manager, Homage Malaysia (Left). Jeffrey Leong, Northern Expansion Manager, Homage Malaysia (Right).

Jeffrey Leong, the Northern Expansion Manager of Homage Malaysia, believes that the “sandwich generation” is often the ones saddled with caretaking duties because they have to look after both their elderly parents and their young children. During the pandemic, caretakers face the additional element of fear of being infected.

Nur Hasanah took care of her husband at home as his condition was not severe enough to warrant hospital admission. “Taking care of a Covid-19 patient is different because other than focusing on his health, you also need to make sure that your house is clean so you will not get infected at the same time. The costs of disinfectants, oximeters and thermometers add up. I cannot imagine how a B40 family could afford all this.”

Things took a turn for the worse when Hasanah’s father too was infected one month after her husband recovered. Hasanah’s mental health took a big toll as apart from the stress of keeping herself safe, she was also forced to witness her loved ones’ health conditions deteriorate day by day. “Seeing a person who enjoys food so much lose their appetite is heartbreaking. And at that time, I couldn’t get help from my siblings because of the movement restrictions.”

Hasanah visiting her dad after his recovery.

During the Movement Control Order (MCO), family members were the first caregiving option because of limited medical resources and restricted movement. Caretaking fatigue does not only affect the caretakers themselves but also those who are around them. PC Gan claims that the stress will often be transferred to family members and potentially strain family relations when the frustration is not well-handled.

Family members are expected to take care of and support each other but it should be remembered that everyone needs their own space and downtime. Caretaking fatigue is real and has become more pronounced during the pandemic. Society as a whole needs to recognise that people who have sacrificed their time and energy to care for their loved ones should be appreciated and cared for in turn.

Chan Xin Ying

was previously the programme manager of the Family and Children Affairs Department in PWDC. Currently, she is a PhD student at the Department of Political Science, National University of Singapore and remains an advocate for family inclusiveness.