Being a young caregiver while growing up wasn’t something I planned for. But I’ve learned how to manage stress, how to take charge, and how to care for someone with love and patience.
Contributed by William Stuart Koh
Early Signs of Dementia
When I think of my mum, one of the first images that comes to mind is us in the kitchen. Baking, mixing batter, cracking eggs, the smell of vanilla in the air. Vanilla sponge cake was her favourite to make, and we’d often bake one together. These days, it’s harder to do so, but I still try to bake with her when I can to bond.
In 2023, my mum was diagnosed with young-onset dementia. She was just 64. It wasn’t an easy diagnosis to reach. There were months of MRI scans, hospital visits, and psychological assessments. It was quite a tedious process. But during a hospital visit for something else, the doctor noted in a memo that she showed signs of early Alzheimer’s.
I felt two things at once: relief and sadness. Relief because we finally had a name for what was happening, and sadness because she would be living with this for a long time.
Dementia Affects Everyday Life
Before all of this, I had no idea what dementia really meant. I thought it just meant memory loss. But then I began to notice other issues. I observed her becoming physically weaker, experiencing urinary incontinence, and forgetting how to carry out everyday tasks.
Once, my mom forgot her credit card PIN, and after too many wrong attempts, the card got frozen. Another time, I found out the utility bills weren’t being paid because she had forgotten all about them. That was when I realised I had to step in and take over. I supported her by sorting out her banking, paying the bills, and setting up GIRO.
She used to love going out for long walks or meeting friends, but now she hardly leaves the house unless it’s for church or when I take her out.
Back then, I had just started Junior College. Balancing school and caregiving was quite challenging. I would receive calls from the hospital during my classes, either from my mom or the doctor, to get updates about her condition. I remember approaching my form teacher for help because I didn’t know how to manage some of the situations.
One of the hardest things is how my mum’s personality has changed. She’s not the same as she used to be. She could feel agitated when we talk about dementia, and I’ve learned not to use the word around her. Sometimes, she refuses to shower even when she’s sweaty and gets upset if we bring it up. She used to love going out for long walks or meeting friends, but now she hardly leaves the house unless it’s for church or when I take her out. Still, I do what I can.
The Power of Support
Reflecting on the early days of the diagnosis, one person who truly supported me was my school counsellor, Ms. Noelle Soh. She connected me to people who knew what support was out there. That’s how I found out about the Home Caregiving Grant provided by the Agency of Integrated Care (AIC) and the severe disability benefit. I have also learned a lot just by talking to others who were going through the same thing. It is important to seek support and not be afraid to ask for help. The financial support made a big difference to us.
We need workplaces to be more understanding, to give time off when someone has to bring a parent to the doctor or respond to an emergency.
If there’s one thing I’ve learned, it is that caregivers need more financial support. The $400 a month caregiving grant from the government helps, but it is not enough for families who have to give up jobs to care for someone. We also need more education about dementia so that people know what signs to look for and how to help. We need workplaces to be more understanding and to provide time off when someone has to bring a parent to the doctor or respond to an emergency.
Now that I’m in NS, I am her secondary caregiver, while my helper takes care of most day-to-day support. I’m still the one making significant decisions, such as scheduling doctor appointments, managing financial matters, and helping her stay active.
The Small Things Matter
Being a caregiver while growing up wasn’t something I planned for. But I have learned how to manage stress, how to take charge, and how to care for someone with love and patience.
Most of all, I have learned that sometimes, the small things matter the most, like baking a cake together, or just sitting beside her while she watches her favourite show.
These are the moments I continue to hold onto.
