Caregivers are individuals who are involved in caring for someone who needs help. They can be the primary caregiver who provides direct care to the care recipient, or a secondary caregiver who is a surrogate decision maker. With Singapore’s ageing population, caregiving is in greater demand now as compared to before. In 2016, a paper from Duke NUS showed that life expectancy at age 65 has increased from 8.4 years in 1970 to 20.8 years in 2016, which means that our seniors are now living longer. In fact, the number of elderly has been projected to reach a number of 900,000 by the year 2030. With birth rates dropping from four children to one per female from the 1960s to 2015, it is expected that there would be a greater number of elderly in the population, leading towards a greying population. With people living longer, this would mean that they would likely have to endure more chronic conditions, and will inevitably require care from family or care providers. It has been estimated that there are more than 210,000 caregivers within Singapore, caring for their loved ones.
As our loved ones get older, or develop conditions which impact their life functions, we may have to adopt a caregiver role ourselves someday. For Ashley*, this was a journey which started for her at the cusp of adulthood after graduating from university. She unwittingly found herself in this role as her grandmother and father were struck with breast cancer and terminal cancer respectively, at the same time.
“Balancing the role of being a caregiver to ensure my grandmother goes for her appointments, managing the family finances to pay for the treatments, and having two younger sisters to explain and process what was going on with our father… there were just so many things to deal with,” said Ashley. This is a common sentiment among caregivers. With caregiving being a complex role, what are some of the challenges and pain points caregivers face?
One of the common challenges a caregiver faces is the increase in finances needed to care for their loved ones. With additional medical charges to pay for, and the potential loss of a breadwinner because of the illness, caregivers often feel the added burden of having to manage this extra expense. Even if the illness tides over and the elderly person recovers, some adaptations may have to be made to the home to ensure that it is elderly-friendly and accommodates for the elderly’s independence and safety. Bathroom handles, anti-slip tiles, and walking sticks may be some adaptations required, and will cost money to install them. Additional supplements such as nutrient-rich milk formulas or liquids to supplement the elderly’s diet can be expensive as well. However, there are grants and subsidies available to alleviate the financial burden, which Ashley tapped on.
The toll of taking care of someone, be it physically or mentally, is real to caregivers. With having to care for a loved one round-the-clock, assist with moving them around, and ensuring their safety, a caregiver is prone to spend a high amount of energy on these activities which may lead to exhaustion.
“I recall when I was caring for my father, our days were fairly unpredictable as we did not know when we would need to call for an ambulance to send him to A&E for medical emergencies. We would spend late hours at the hospital, and I would be trying to arrange for my work schedule the next day,” Ashley shared.
“I was so tired, and really wanted more rest – working the day after a late night call to A&E meant that I was prone to be unproductive at work.”
Besides late nights at the hospital, caregiver exhaustion can be increased by having to assist with activities of daily living of the individual. Simple tasks like bathing and going from room to room may need physical assistance and caretaking, and the caregiver may find much of his or her time spent on menial physical tasks which can be tiring. If the elderly are bedridden or wheelchair-bound, an ample amount of physical strength may be required to transfer from wheelchairs to beds, or chairs. Moreover, if the caregiver themselves are ageing, they may not have the required strength and physical capabilities to fully assist them.
“As my father’s illness progressed into the palliative stage, my mother was his main caregiver for getting about the house and his daily activities of living. My mom had to help with showering, getting him dressed, and transfers to his bed. She is quite a petite person, and is also ageing herself – that took a great toll on her.” Ashley quipped.
“It would have been helpful to have a trained caregiver who could provide round-the-clock care for him to help with the more physical aspects of caregiving, and also to bring him for appointments from time to time.” Homage provides night care and medical escort services for care recipients, which can help to relieve some of the load you as a caregiver is facing.
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When caring for someone with a medical condition, there are several medical aspects which the layperson is not trained in, and may not be able to identify as an issue. Lack of knowledge in observing more subtle signs and symptoms of the care recipient could cause the caregiver to be unaware of potentially dangerous medical issues. This would require a trained eye, or someone with experience in the medical field to help caregivers spot when their care recipients may be affected by a life-threatening issue.
For Ashley, there were several close calls where the family did not have the knowledge to identify that her father was facing a medical issue, until a trained professional with caregiving and medical experience explained to them about it. Caregivers and nurses in Homage are trained to spot such conditions in case of medical emergencies.
“My father was actually experiencing fluid retention in his lungs, which could be life-threatening if not dealt with in a critical period of time. Only when a nurse came to care for him, did she point out to us the signs that he may be experiencing fluid retention in his lungs. This knowledge helped us to be able to identify these crucial moments, and know when to call for medical help.”
Finding a balance between different roles
The caregiving role is complex and multifaceted. Not only is the caregiver a caregiver to the care recipient, but the caregiver may be a parent, employee, child, or partner to someone else. If a caregiver is a parent, it is often stressful and painful to have to consider forgoing opportunities and education plans for their children in view of having to pay for the financial expenses of the care recipient. Moreover, the multiple roles and identities of a caregiver are often forgotten in view of their primary role as a caregiver, in the eyes of others.
Ashley recounts a particular trip where she had accompanied her grandmother for a chemotherapy session at the hospital. She was assisting her grandmother to walk to the bench to take a rest, when her grandmother fell down in front of everyone in the waiting area, causing her to fall as well.
“I knew that we were going to fall, so I tried to lessen the impact for my grandmother by turning my body to ensure I would land first and help to cushion the fall. After the fall, everyone rushed to pick my grandmother up and chided me for letting my grandmother walk right after chemotherapy, where she would not be in a good state,”
“I was also hurt from the fall, and had bruises on my knee. However, all attention was focused on my grandmother, and no one cared about the fact I fell as well,” She recalled, as her face tightened slightly from the recollection of this memory.
“Besides being a caregiver to my grandmother, I was also a daughter supporting my mom through this tough period, an elder sister to my two younger sisters who looked to me for guidance, and an employee trying to carve out a career for myself, just having started working,”
“During that period, work was the rock I could go back to; it created some normalcy in my life – everyone my age were starting to work and focusing on their careers, and having a job to escape from caregiving and things at home gave some sense of relief to me as well.”
Caregivers have private lives to live, and other roles to play too. Clearly demarcating the role to an external caregiver may be helpful, which is what Homage can help in creating clearer role distinctions and easing the stress on the caregiver, allowing them to pursue some of their personal aspirations.
Emotional stress and burden
Lastly, caregivers often face high levels of emotional stress and burden from caring for their loved ones. Oftentimes, caregivers will want to offer and provide their best to their care recipients, and place a high amount of stress on themselves to achieve this.
As Ashley’s grandmother had osteoporosis aside from breast cancer and was prone to falling, Ashley and her family were on tenterhooks every night, anxiously trying to listen out for any movement from her grandmother getting up to walk to the bathroom.
“Once, my grandmother had a fall and no one was home. That incident left us with a lot of guilt and fear of her falling and having no one around, and now we are always looking out for her.”
Spending significant amounts of time caring for a care recipient can cause added tensions, and also result in greater isolation for the caregiver, as they have minimised social contact with others. Moreover, it can be very upsetting to watch a loved one’s condition deteriorate, knowing there is little one can do to help besides try to ease the discomfort.
It can also be frustrating dealing with the personalities of the care recipient, as personality or mood changes fluctuate and change during the course of treatment. Ashley’s grandmother was adamant that she wanted to continue cleaning the house, even though she had weakness after chemotherapy, and her family found it difficult to negotiate with her to stop doing the chores. This could add to the greater burden and emotional stress in caring for the care recipient.
“We knew it was part of her effort to maintain normalcy and gain a sense of worth, but it would also cause us to feel extremely worried that she would fall down and hurt herself again. It was also frustrating to have our words of taking precautions fall on deaf ears, as she would climb high and low to clean every nook and cranny of the house.”
Some ways of managing this would be to have someone else do the cleaning, like a helper or caregiver. Also, ensuring that the care recipient has a constant individual (like a helper) near them to accompany them to vent their frustrations, or to check on what they are doing, could help to manage the care recipient’s emotions and hence the caregiver’s as well.
There are many pain points and stresses a caregiver may face in the course of caring for their loved ones. Having a care recipient may alter life drastically for the caregiver. What may help to alleviate some of these challenges would be to seek assistance from an external caregiver. Some of the duties and burden can be handed over to someone more professional and well trained for the course as well, for the best care of the care recipient too.
Special thanks to Ashley*, who took her time out for conducting this interview and contributing this valuable perspective.
*Name changed for privacy
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- Centre For Ageing and Research Organization. (2018, November). Research Brief Series : 6 Caregivers of Older Adults in Singapore: An Overview and Synthesis of Empirical Studies. https://www.duke-nus.edu.sg/docs/librariesprovider3/research-policy-brief-docs/care-research-brief-6—caregivers-of-older-adults-in-singapore—an-overview-and-synthesis-of-empirical-studies-(online).pdf?sfvrsn=d3098e53_4
- Palmer, A. (2021, March 30). The Challenges Facing A Family Caregiver | ASC Blog. Senior Living & Nursing Homes in Indiana | ASC. https://www.asccare.com/the-challenges-facing-a-family-caregiver/
- Soh, C. (2021, April 21). Caregiver Stress – How To Prevent Burnout And Deal With Fatigue? SeniorCare – Singapore’s Most Reliable Online Elderly Store. https://seniorcare.com.sg/caregiver-stress-prevent-burnout-fatigue/
- TODAY Online. (2021, March 9). The Big Read in short: Answering the silent cry of caregivers. https://www.todayonline.com/big-read/big-read-short-answering-silent-cry-caregivers