By Milene Lum Rui En & Neo Yee Pung
Caretakers. They are always the one giving love and care but not necessarily the ones who receive the most back despite how tiring and stressful the job can be.
A 2004 study by the National Council of Social Service (NCSS) stated that, “it is estimated that there were about 210,800 caregivers... The number is likely to have soared, given the ageing population.”
Amongst blocks of buildings, two caregivers who are also known as therapist-in-aids (TA), 41-year-old Mary Godeharda Aspillaga (Gode) and 23-year-old, Nann Wutyioo (Nann) , care for their respective teams consisting of at least 3 to 4 clients each day at the Red Cross Day Activity Centre for the Disabled (DAC) located at Jurong West.
Equipped with their face masks and hand gloves, Gode and Nann would usually start their day an hour earlier than their expected shift at 8.30 a.m. to disinfect commonly touched places such as tabletops, health and game equipment that they have touched throughout the day such as the cups, balls and mini bowling pins.
After disinfecting the wheelchairs, Gode and Nann would welcome clients into the centre by taking their temperature, blood pressure as well as disinfecting and giving hand rubs before conducting their different exercises which differ from day to day.
Caption: Red Cross therapist-in-aid Nann helping client Ahmad Fadley Bin Yusuf to get off from his plinth and onto the wheelchair in preparation for tea break where clients usually get a cup of hot milo and crackers. (PHOTO: Neo Yee Pung)
On the day that we arrived at the DAC, Nann was conducting a Passive Range of Motion (PROM) that exercises the arms and legs of clients when the clients are lying on the plinth also known as the “bed”.
Caption: Red Cross therapist-in-aid Nann helps client Vignesswaran S/O Anbaldgah (Vicky) to wash and clean his hands after he completed his activity in preparation for tea break. (PHOTO: Milene Lum Rui En)
While Nann was conducting the PROM, Gode was walking her client for a breather before returning soon after to prepare her own group of clients for tea break. Before eating, both Nann and Gode would bring their clients to the toilet to help them clean up and even during tea-break, Nann and Gode would have to assist clients by feeding them when they have difficulties in doing so.
Caption: Red Cross therapist-in-aid, Nann Wutyioo, helps 28-year-old Mohammad Fadly Bin who is diagnosed with Spastic Cerebral Palsy to stack and arrange cups that improves hand movements. (PHOTO: Neo Yee Pung)
Before the Covid-19 pandemic, Gode and Nann would usually conduct activities such as baking cookies, making sandwiches, and having wheelchair walks but with the current restrictions of the pandemic, Gode and Nann had to resort to leisure activities such as watching movies, mini dance sessions and simple hand exercises such as moving and stacking cups.
Obstacles & Challenges
However, not all things are smooth sailing for the caregivers as they are often faced with emotional hardships such as stress, frustration and pressure.
A 2014 study by the National Council of Social Service (NCSS) found that nearly half of caregivers of persons with disabilities experienced poor mental health. Four in 10 reported being psychologically distressed, with six in 10 feeling burdened by caregiving.
One of the biggest challenges a caregiver would often face while handling clients would be time management. Every patient has a different medical condition that requires careful and active monitoring; hence it takes time to cater to each and every needs of all the patients.
“Yup, I'm coming, I'm coming,” were words that echoed throughout the hall of the Day Activity Centre as Nann went from client to client to entertain all their needs and wants.
“Sometimes, I’m unable to do the things that I want to do in a day. There is only one of me attending to 6 people so it’s quite difficult for me to do all the things that I want to do for the clients. I can’t even go to the toilet (even when I’m really urgent) because I can’t leave the clients alone. There is always a pressure on me to always be there,” added 41-year-old Mary Godeharda Aspillaga.
The two therapist-in-aids would usually rotate between one another for their one-hour lunch break to ensure that there is at least one therapist on standby.
Caption: During mealtimes, Red Cross therapist-in-aid Gode has to help some of the clients eat and drink personally by feeding them and holding their cup as they drink. This is because some of the clients might have difficulties in doing so themselves. (PHOTO: Milene Lum Rui En)
Besides work stress, Red Cross therapists also face emotional stress where they are unable to tell their close friends and family since they’re working outside their home country.
For Gode, she would usually video-call her husband who is back in the Philippines on what had happened throughout the day to let off some stress that she faced and to fill the emotional void that she is missing while being away from her family.
Similarly, Nann who was born in Myanmar also faced the challenge of being away from her friends and family. To overcome this challenge, Nann would interact with her friends through social media, watching her favourite shows on the phone and giving herself some words of encouragement.
“I overcome it by reminding myself that everyone has difficulties doing their job and I am doing a good deed for the society,” said the 29-year-old.
Favourite moments
However, being a therapist-in-aid does come with its memorable moments for Nann and Gode.
Caption: As part of their daily activities, Gode joyfully clap her hands together with 24-year-old Nurul Syazwani Binte Sohrani who is diagnosed with Cerebral Palsy Spastic as they sing and dance along to songs. PHOTO: Neo Yee Pung
For Gode, she recalls the time before the pandemic when she went to Marina Bay Sands for a group outing with her clients.
“One time when we brought them (clients) out for an outing at Marina Bay Sands, they were so excited that they would take many pictures. Seeing them so happy made me happy as well,” said Gode with a huge grin on her face.
Nann, on the other hand, felt that her greatest joy came from the improvements that she sees from her clients.
“I feel really happy when I see improvements in them. For example, some who previously weren’t able to do certain tasks would gradually get better to the point where I wouldn’t have to help them as much as before.”
“For instance, there is a client who would sometimes help to clean the tabletops for us when we are busy. She would also take the initiative to help us feed other clients who are unable to do so themselves, seeing this really makes us happy because it’s always good to see them helping one another out,” added Nann.
What it takes
Caption: Therapist-in-aid,Gode helps 28 year-old Ahmad Fahmi Bin Yusof, who is diagnosed with Microcephaly with delayed development, epilepsy up the Red Cross vehicle to be transported home before dinner. Photo: Neo Yee Pung
When asked what is the greatest trait needed to be a caregiver, both Nann and Gode agreed that without a doubt, patience is the most important as they are constantly dealing with patients who are intellectually disabled which means that they are also slower when learning or doing tasks.
“I feel like our patience has grown while being on this job as I would usually have to wait for them to finish doing their activities even though they might take a while,” answered Nann.
Even though it was hard for Nann and Gode to understand their clients at first, it slowly became easier for them as they started spending more time with their clients.
Gode felt that since every client has a “different form of communication” it was important to put herself in the shoes of her client to understand what their needs and wants are.
Besides spending time, both Nann and Gode felt that “hand signs and verbal shouting” were really useful in understanding what the client wants because they would signal to the therapists whenever they need help with something.
After a day at work, the two therapists-in-aid would look back on what they have done for the day and reflect on how they can better serve their clients tomorrow.
Caption: Dynamic duo, Gode and Nann smiling vividly behind their masks as they finish their 9-hour shift PHOTO: Neo Yee Pung
An advice that Gode and Nann have for future caregivers would be, “be patient whenever you can and put yourself in their shoes” and “it will be tough but it gets better.” This may seem as simple to many but hard to execute when the time calls for it.
Parent as a Caregiver
Most people do not plan on becoming a caregiver, especially parents with children diagnosed with various developmental issues and needs. They become “special parents” without any sort of training or lessons unlike professional caregivers.
Caregiving for the developmentally impaired can be challenging and tiring. Caregivers may become “hidden patients” who toll behind the scenes unconditionally at the expense of their own mental and physical health due to constant fatigue as well as daily physical and emotional exhaustion.
When the child faces prejudice and judgement from others, their parents are often included too. The public might not think that they know how to parent their child properly. The “naughty” behaviour as mental disabilities tend to be hidden and categorised as an odd behaviour by others whereas physical disabilities are easier to detect and understand.
Mother of a 7-year-old autistic child, Michelle Ang, recalled: “My son used to have meltdowns in public and people would look at us weirdly. Sometimes, the older folks would scold us and say things like, why we never teach him properly or why he is so naughty. They would misunderstand and think that he’s throwing a tantrum.”
Obstacles & Stress
(7-year-old Jozen Lum Zheng Rui who is diagnosed with Autism Spectrum Disorder (ASD), making cupcakes for himself as part of his activity with his parents. PHOTO: Courtesy of Michelle Ang)
Aside from being the sole caregiver of their child, they also face stress and pressure from the added financial burdens and heavy worries they carry in their heart. Being a parent and caregiver at the same time means they have to think about their child’s lifelong future, especially in the financial aspect.
Afterall, some individuals might require full income support for the entire duration of their lives as they might not be able to earn an income for themselves and this income support usually comes from their parents. Hence, parents have to do careful financial planning ahead as they might not be able to work so much when they grow older.
Parents also constantly worry about what will happen to their child after they pass on. “What if they can’t take care of themselves and there’s no one there for them when we pass on. I think all parents (of special needs) feel the same. That’s our biggest worry,” said the housewife who is a mother of three.
However, being a caregiver to their child does not take away their parental joys; they still have their proud and lovable moments. “When I see improvements in him, I feel proud, even if they are small ones. When he says “I love you” and hugs me, you know his intentions are genuine because he doesn’t lie so it really warms my heart,” said Michelle with content in her eyes.
(The 44-year-old mother brought her 7-year-old son to Shanghai Disneyland in China for their once in a blue moon trip. PHOTO: Courtesy of Michelle Ang)
Unconditioned Love
Unlike employed caregivers, parents who are taking care of their own child do not have an off-day where they are able to take a break from caring. They often put their child’s well-being above their own which might lead to burnouts due to insufficient rest.
To take good care of their loved ones, caregivers must be in good shape themselves. After all, their personal well-being does have a direct impact on the ones they are caring for.
Caregivers can find support through emotional connection with their friends and family or fellow caregivers who are in a similar situation. They can provide encouragement to caregivers as well as help them seek professional help when it’s necessary.
Most importantly, let us not forget to care for our caregivers. They need as much love and care as much the ones they are taking care of.
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