“I have lived with two grandparents diagnosed with dementia. When I was 8 years old, I lived with my maternal grandmother. At 21 years old, I was a secondary caregiver to my paternal grandfather.” Cheryl Ng shares how she learnt to understand dementia from a young age.
By Cheryl Ng, Renee Tan
My maternal grandmother had been through multiple strokes. She needed someone to care for her. Hence, when I was 8 years old, I started living with her. I only knew her after she was diagnosed with dementia; after her behavioural changes. It is difficult to differentiate between my grandmother before and after the behavioural changes — I am never really sure where to draw the line.
Struggling to understand why she was acting this way
With my grandmother, I was too young to fathom the idea of dementia. She had behavioural symptoms, which I liked to call quirks, that she could not help but express. I could not understand why she did what she did. There was a lot to take in and navigate around.
For example, my grandmother still believed she lived in Johor Bahru, Malaysia, even though the last time she lived there was 40 years ago. She would bang on our house’s gate, and demand that our family let her out so she can go home. She required the aid of a walking stick but she would also make use of it to whack everyone. She did this for an entire year.
When my family gave my grandmother some clothes to fold, she started wearing my child-sized clothes. Although the clothes were clearly too small for her, she was very insistent that they belonged to her. This often confused me and I struggled to understand why she was acting this way.
I always thought that grandma would get better one day.
Feeling like we always needed to be on the lookout
In the afternoons, while watching television together with my grandmother, she would stand up suddenly, without the support of her walking stick. She would also often be found wearing my slippers even though it’s too small for her, trying to walk around the house. This was very scary and I felt like we needed to always be on the lookout for her. We would never know if and when she would fall and injure herself.
My grandmother would also wake up in the middle of the night to cook. As a family, we never knew that this was happening, until one night, when my father visited the bathroom at 5 AM and discovered her cooking in the kitchen. This was dangerous because my grandmother could forget that the fire was on.
My ‘normal’ may not have been her ‘normal’
At that age, I had very little understanding of dementia as a condition. Some days were more difficult to navigate than others, but I always thought that my grandmother would get better one day. It was only a few years after my grandmother passed away, and when I had more understanding about dementia, that I really understood what dementia is, and made the connection between my grandmother’s experience and the diagnosis.
I now know that my grandmother was living with a condition that impaired her memory and personality. I also realise she had little control during the times she acted differently from what I thought was ‘normal’.
I think my biggest learning is in recognising that my ‘normal’ may not have been her ‘normal’ in those situations of confusion. This has taught me the need to adapt to my loved one’s reality, and gave me the ability to truly engage with my grandfather when I started caring for him later on.