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Sophia, main caregiver for her father before his passing, reflects on the necessity of being flexible with truth when communicating with persons living with dementia.
When I was a child, I had to help out at my parents’ stall at the market, especially during festive seasons. As a primary school student, my mind was not always on the stall’s business, and I often sneaked off to look at toys. One afternoon, a fascinating storybook at the nearby emporium caught my eye. It was filled with colourful illustrations and cute characters, and I could barely put it down.
Unable to resist the temptation, I filched a $5-note from the till in our shop and ran off to buy it. But this did not go unnoticed by my eagle-eyed mum, especially when I had no means to hide the newly-acquired storybook or explain where it came from. Upon returning home, I was caned for stealing and promised never to steal or lie again.
Growing up, I learnt that the adult world has varying levels of what constitutes ‘truth’. Some people are ‘economical with the truth’, while others are so blunt that they offend whenever they speak. Even now as a middle-aged person, I have to take care navigating the intricate layers of social truthfulness with different people. With my parents, I was sometimes tactless to a fault because I thought that surely, one should be able to speak the absolute truth at home!
Little did I know this belief would be sorely tested as my parents advanced into old age. My father, for instance, became more and more forgetful in his late 70s. On one occasion, he asked me three or four times in a single day if I had eaten. I shouted at him, “Pa, how many times do you want to ask me the same question?”, to which he reacted with great surprise. Eventually, it was a friend who pointed out that he might have dementia.
After suffering a bad fall in 2018, he had to be admitted to hospital . I took the chance to ask doctors at the hospital to test him for dementia. He was eventually diagnosed with Alzheimer’s Disease, which explained why he had become more forgetful and acerbic than before. My mother complained about him offending customers at the stall because he made mistakes counting money and had forgotten social norms of politeness.
In November 2019, my father suffered a major stroke which exacerbated his condition. He needed to be hospitalized again, and my family started to look into home care for him. He forgot how to remove his dentures before bedtime, mistook me for my mother, and believed that he was looking into Tibet when he gazed out of the window. It was very painful watching the person who had brought me up become less and less of the man he used to be. One day, a nurse called to tell me that he had cried over “missing his childhood in China”, when he was in fact born and raised in Singapore. It was very distressing to hear him becoming confused and emotional over his early years.
Then one morning, when I was visiting my father in the hospital, he asked me, “Where’s your Second Uncle?” His younger brother, whom he had been very close to, had passed away a few years earlier. My heart sank at the realisation he could no longer remember such a significant event and worried that telling him the truth would send him into great shock and grief. What if he asked me the same question the following day, and become distraught all over again that his brother had ‘suddenly’ died?
“Oh, Second Uncle is busy at his shop. He’s not free to come and see you today,” I lied. I still remember this moment vividly even today. Although I told him this white lie to avoid hurting him, my face still burned hot with guilt, while I was trying to sound as casual as possible.
Subsequently, I had my father transferred to a hospital closer to home. A few days prior to the move he had another major stroke and mentioned his brother again: “Your Second Uncle asked me to get dressed, have breakfast and to go with him.” In the wee hours of 27th November 2019, my father passed away in the hospital, with our family by his side.
Mentoring Youth to Interact with Compassion
My experience caring for a person with dementia eventually led me to work for Dementia Singapore in a youth outreach project. There are days when I accompany student volunteers to our New Horizon Centres, where they get the opportunity to interact with senior clients living with dementia, a condition unfamiliar to many children of school-going age.
During our volunteer briefing sessions, we take students through the ‘do’s and don’ts’ of communicating with persons with dementia. This includes treating repeated sentences as a fresh interaction and how to redirect awkward conversations. I share with them my personal experience so that when they talk to persons living with dementia, they would know what to do and react in a calm manner even if they observe behaviours that “bend the truth”. If a client should decide to colour a panda yellow and green during an art and craft activity, it is less stressful to go along with it, than to insist that a panda is white and black!
In a way, this is a valuable lesson in learning how to let things go, rather than insisting on absolute truth that needlessly causes pain and grief to someone else.
Perhaps it is also my way of making peace with myself for being untruthful with my father before he passed away. I hope that he has forgiven me for my white lie.
ABOUT THE WRITER
SOPHIA TAN
Sophia Tan is a former teacher who taught at MOE schools, enrichment centres and a university. She cared for her late father for two years when he had Alzheimer’s Disease. In her free time, she enjoys reading, travelling and learning new languages. She hopes to publish a storybook one day.
