Contributors
Almost a decade ago, in 2009, my dad was 71 when he was diagnosed with dementia at Tan Tock Seng Hospital. Although he never had many friends, he started to isolate himself and avoided family gatherings. He started losing track of time, dates and days, and slept at weird hours for lengthy periods. For instance, he would sleep at 7am and wake up at 3pm, sleep at 6pm and wake up at 10pm. His sense of day and night was terribly off, and he would wake up at 10pm wanting to have breakfast. He was in denial and refused to believe that he had dementia, and even ignored the need to take his medication.
In that same year that my dad was diagnosed with dementia, my mum at age 66 was also diagnosed with stage 3B breast cancer. I felt like my whole world had collapsed. It felt like winning the Razzie Award (honouring the worst in the film industry) twice in a single seating! I was barely 30 years old, only in my second job, and taking home S$2,500 a month – it was barely enough to cover our living expenses of S$800 per person. Medical bills were piling up.
Before my dad had dementia – he was a business owner who retired way too early to become a caregiver for his own mother who passed on in 2005. He had three fat zeros in his Central Provident Fund (CPF) account, this meant that he never had much money stashed away for any rainy day. Additionally, my mum – a former nurse – never believed in the importance of medical insurance. That was when it hit me – I was the sole breadwinner, and we were in financial hardship.
Unprepared
Being the only child, I felt like the invisible third patient in a family of three. And being young – what did I know about caregiving? The burden of our financial difficulties was lurking in my mind 24/7. I was under a tremendous amount of physical and psychological stress. It was driving me up the wall. I would breakdown and cry because I felt helpless and I really didn’t know what to do.
To cope, I was eating way too much junk food, and had grown out of shape. I was awfully negative, and often in denial with a “why me?” attitude. I was highly irritable, impatient and at times, aggressive. I did not get enough rest. I slept very little each night. I was angry at both my parents and started socially isolating myself. I lost some very close friends during this period, and some could not understand and comprehend why I was behaving in this way. As resources became strained from balancing work and caregiving, my well-being was also impacted tremendously. I knew my behaviour and mindset had changed for the worst. Furthermore, my dementia knowledge was limited and information on dementia at that time wasn’t readily available.
I also thought of leaving my full-time job to become the full-time caregiver to my parents. Looking back, I am glad that I didn’t. I perfectly understood that my job was the only thing putting food on the table. I did not have a better option at all, it was crazy to say or even think of becoming a full-time caregiver in my situation.
As my father’s dementia progressed, my role as a caregiver became even more challenging. I initiated a conversation with my former manager and told him about my role, responsibilities and needs as a caregiver to my parents. He understood – and so did the senior management of the organisation I was working for. To be candid, I said, I can choose my job and my career, but I can’t choose the family I am born into.
As a caregiver, it is crucial to speak out and allow others into our perplexed world. So speak out – because it really helps. It not only allows others to understand why we are like this, it also gives us that emotional booster to be able to share our story with people around us. I spoke with so many colleagues back then about my situation, and not only did they understood, showered their concern, they rallied behind me, and even went the extra mile to raise funds for my family. Beautiful, isn’t it?
Balancing work & caregiving
Being a working caregiver meant that I used up most of my annual leave to care for my parents. Fortunately, after speaking out – I was given some flexible work arrangement at my job.
Here’s an example of how my day was like as a caregiver: I would come into the office right after mum and dad had their breakfast about 8am. Then, I would leave early for lunch around 11.45am. For weeks, I took extended lunch hours. During those lunch hours, I would pick up my parents and head for the hospital – where my dad would go for geriatric tests and assessments while my mum went for radiotherapy and chemotherapy. After sending them home, I would return to work around 3pm, and stay until 7pm when I had to go get takeaway dinner for my parents at home. My promise to dad and mum was that I would have breakfast and dinner with them for as long as I could.
Our financial situation was still tough. The gig economy didn’t even exist back then. There was no Uber, or Grab, which I could have driven for to earn a precious side income. But I had a car, which I used to ferry my parents to their hospital appointments. In the evening, I would put my parents to bed at 9.30pm. Then, I would head out to pick up friends and colleagues who needed a ride home after work or after a night out in town. They would put money into a little tin container in my car and say, “Daniel, this is for the petrol”. I am glad I had support that way. I also took on part-time jobs such as a mall mascot and gave out flyers on the streets.
A caring organisation
Even while being a caregiver, achievements at work meant a lot to me. I was working for the LaSalle College of the Arts (2005 to 2010) back then, and I was fortunate that not only did my employers understand what I was going through, they also did not let my caregiving get in the way of my career progression. I was tasked with individual work that I was good at and they did not set me up to fail with group/team contribution type work, in short, I became an individual contributor.
They went as far as to encourage me to apply for a scholarship to fund my further studies, which I did. And with their support, I got it! I felt a great sense of gratitude towards them, and that drove me to work hard and attain a distinction for my MBA. With their support, I was able to achieve success at work. A win at work was a win at home. I was only able to do this because my employer knew about my situation, and because I was honest and transparent about my family’s needs.
Even after I served my time with LaSalle, my new employers gave me similar opportunities to work on exciting projects that greatly benefitted the local education industry, and embark on further training and studies. Looking back on the last 10 years – I never stopped learning, upgrading my professional skills, and meeting new people.
Back at that initial and critical period, I had to put everything in my life on hold for my parents. I did not have a life back then. But the support I got at work helped me to improve the quality of care and life for my parents. In my opinion, it’s about enabling dad to be able to do the things he wants to do for as long as he wants to, enablement provides him with the dignity to live his life.
Today, mum is actively engaged with her exercise routine which includes helping the seniors in our estate, teaching them warm-up routines in the community centre and learning Mandarin classes. She also attends classes on how to use Facebook and Instagram. She no longer cooks much now, which is something I miss very much. As for dad, he is tasked with duties which he takes pride in doing such as washing the dishes after every meal and ensuring the toilet floors are dry. He still sings often with his siblings. However, he has been unusually emotional and down this week as he is mourning the loss of his sibling aka his karaoke buddy.
As for me, I am a StrengthsFinder coach and a LEGOSeriousPlay facilitator, and I have a full-time professional career with a not-for-profit US accounting association serving in a business development role. Yet, as a caregiver – I still face very real challenges on a daily basis. I try to balance my caregiving with other demands, including having a career and maintaining personal relationships. Caring for a person with dementia is more stressful than what many would realise – and juggling that with work is a diverse and complex challenge.
When I share my caregiving journey with others for the first time, they usually ask me: “How do you even keep your sanity in check?”, and “How do you find that balance?”. What I do is ask for help, and actively seek for it. It’s ok to say “I can’t handle it anymore”, which is what I do these days. So step up, and speak out. You’ll be surprised at the outcome.
Daniel Lim is passionate about enabling his parents to continue to do the things they love for as long as they love. Turning 38 this year, he continues to be gainfully employed, working full-time in a not-for-profit accounting association and is the sole breadwinner for his family.
** EDITOR’S NOTE: If you haven’t read Daniel’s other story sharing more about balancing work with caregiving, click HERE.
