A SOURCE OF SUPPORT
Throughout this time, I remained optimistic for my dad’s recovery, as he was diligently doing active rehabilitation three times a week.
But after about a year, the occupational therapist told me that she would be moving my dad to maintenance rehabilitation.
To me, this meant the odds of recovery just plunged. It was a huge blow for the both of us.
It took me a while to recover from the shock and accept this development. As cliched as it sounds, I had to remain positive.
After that, caregiving was about finding activities to occupy him, as he was no longer able to do many of the activities he enjoyed.
However, it was painful for me to see how rehabilitation took a toll on the dad that I knew.
He slid into depression, and stopped hanging out with his friends and refused to answer their calls. In 2020, the lack of social interaction due to Covid-19 worsened his mood.
It hit me hard to hear him say to me that he was better off dead.
I made sure to spend more time with him. If I was not busy with my online classes, I would sit with him to watch TV together and talk to him, something that we never used to do previously.
FINDING THE RIGHT SUPPORT NETWORKS
After my father’s discharge from the hospital in November 2017, there were many things that I had to settle.
First, I hired a helper who could care for him at home.
The initial placement fee came up to S$5,000, but thankfully, my uncle and aunt helped with the upfront cost. Learning how to ask for help made a huge difference, and it was a humbling experience for me.
Taking after my dad’s spirit of quiet resilience, I often find it difficult to ask for help.
For example, when my helper had to go on long leave, I was simply unable to take time out as I was working full-time. I called multiple nursing homes and weighed out the costs of different options before deciding on the one to engage.
However, I still needed someone to open the door for the help to enter and deliver food for my father. I had no choice but to approach my relatives for help again despite their busy schedules.
Without any hesitation, they agreed to help take turns to offer their help.
For a caregiver, having strong support and help from other family members is truly invaluable.
What also helped me was having a social worker to take me through the options I had available. She also helped us with the application of various financial grants and schemes.
I learnt about the Agency for Integrated Care’s (AIC) Caregivers Training Grant and the Migrant Domestic Worker Levy Concession. The latter helped to offset the cost of hiring a helper due to my father’s disability, and we only had to pay S$60 monthly instead of S$350.
AIC’s Home Caregiving Grant, which gives eligible caregivers a cash payout to support those with at least permanent moderate disability, was a lifesaver. In March this year, it was increased to S$400, which helped greatly to offset some caregiving costs, especially since my dad’s payout for ElderShield was ending.
The social worker also helped us to apply for the Assistive Technology Fund (ATF), which provided us with some subsidies for assistive technology devices, such as a wheelchair for my dad.
It was important to me that my dad could remain engaged and active at home.
Initially, I tried signing my dad up for various community activities available in the neighbourhood, but it was difficult to find one that was stroke-friendly.
I then learnt about the Stroke Support Station (S3) at the Enabling Village, a disability services and support organisation.
Because it was quite far from where we lived, we had to get there via the train during the peak travel periods in the morning.
It was a difficult routine for my father to get used to, because people would sometimes stare at my dad on his wheelchair in the crowded train which made him uncomfortable.
He protested going out a few times for this reason. Thankfully, we recently got to know about S3’s transport voucher where we would pay a subsidised rate to take a cab.
It makes travelling to the Enabling Village easier and my dad is more willing to attend the activities.
THE IMPORTANCE OF SELF-CARE
As a caregiver, it is easy to get consumed into wanting to do more and more for someone you love. No one prepares you for that guilt you experience every time you take a break.
When I got married, I felt very reluctant to move out of my father’s place. I was beset with anxiety over whether my dad would be well taken care of by my helper, or whether he was doing his daily walks and eating healthily.
Eventually, I moved out in December 2022 because I felt that I needed to grow as a person. I needed to be fair to my husband and build a life of our own, whereas my father preferred to stay at his own place.
While I was glad to have my own space and time now, there will always be that nagging sense of worry at the back of my mind.
Whenever I take time off for a trip, I can’t help but feel a sense of guilt. How could I go off to see the world and soak up new experiences, when my dad is limited by his disability?
But I had to remind myself that I am my own person, and I need to live my life as well, considering that I am still young.
I realised I needed to give credit to my own efforts and also to give myself a much-needed break.
It took me a few years to find that balance as a caregiver, and as my own person.
To young caregivers that are going through something similar, I would like to share one of my favourite quotes by the novelist Haruki Murakami:
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.”
You will learn that you are capable of things far beyond what you can imagine.
ABOUT THE AUTHOR:
Pauline Teo, 30, is a full-time tuition teacher. As a caregiver to her father, a stroke survivor, she is also a recipient of the Home Caregiving Grant administered by AIC. The agency recently launched the “We See You Care” campaign to raise awareness on what it means to be a caregiver and highlight support for them to tap on.