“Right then, it dawned on Alexis that tonight’s walk could be the last that she would ever have with her grandfather.
No more of his booming laughter. Or his loving pats on her head. No more silly stories.
She coughed and swallowed the hurt that had built up at the back of her tongue, like a giant bitter pill crawling slowly down her parched throat.
He’s right here in front of me, but why does it feel like Grandpa has left and gone away?”
A Story Of Hope, Love And Family
This heartrending quote is from a newly debut family novel for children, their grandparents, and the people in between. It’s a story inspired by the author, Daryl Kho’s personal experience as a caregiver and how his Pa’s dementia robbed him of memories and personality.
The book was completed after Daryl’s father passed away and each time a child reads the story, it is a chance for Grandpa to be “saved”, over and over again.
Our elders are like living libraries, filled with stories, experiences, wisdom, and knowledge
The Long And Winding Road
In Mist-Bound: How to Glue Back Grandpa, we follow the adventures of Alexis and grandma as they try to revive grandpa’s memories. They race against time to find the key ingredients for the Memory Glue to help restore the fractured memories of grandpa. While the quest was unexpectedly long, winding and bumpy, grandma walked beside Alexis at every step of the way—helping her vanquish the treacherous creatures that came their way.
We asked Daryl to share the inception and deep meaning to the book.
“There’s a quote by a Malian author Amidou Hampate Ba: “when an old person dies, a library burns to the ground” that prefaces my novel. This line has served as a North Star for my book, as it gave me a perfect metaphor for what I felt about my dad and dementia.
It captures the fact that our elders are like living libraries, filled with stories, experiences, wisdom, and knowledge. And it occurred to me that dementia was like the fire that was actively burning those books and shelves in front of our very eyes. I wanted readers to value and appreciate their elders while they’re still around, and to go “borrow” the books and seek out their stories from within their minds before it’s too late.
So much is lost, so much is wasted, when death and dementia burn those shelves to ash and smoke. That deep sense of loss was something I tried to capture in my story.
Not just due to dementia, but basic human mortality. Especially now with covid-19 which can suddenly snatch the ones you love away without giving a chance to even say goodbye in person.”
My Secret Ingredient To Caregiving?
In the same vein, caring for a loved one living with dementia is a tedious quest. It’s a series of unexpected challenges needing you to constantly switch your mind to adjust to the situation at hand. You experience an emotional rollercoaster of extreme highs and lows, leaving you overwhelmed, anxious and sometimes even intimidated by your duties.
Like Alexis and her grandma in the story of Mist-Bound, finding the “secret” ingredients to caring for a person living with dementia is definitely not a walk in the park.
Daryl shares, “Of all the magical ingredients needed to save Grandpa in my book, the most critical ingredient is the love of one’s family: that it is the bonds of family that keep us glued together.”
We couldn’t agree more. For many caregivers, love is the solid underpinning that sustains them. This love is not one-sided, it flows deeply between both the caregiver and the one receiving care. The unbreakable bond created through years of caregiving could also be viewed as a form of connection to your loved one as life slows from the fast pace of the outside world to the slow time of giving care at home.
The simple activities of feeding, showering, toileting, taking a walk together helps you form an unhurried pace that can provide you a space to transform caregiving to something even more precious. As you encounter tricky situations, we hope that love will eventually help you navigate them gracefully.
For many caregivers, love is the solid underpinning that sustains them
Form Your Support System
Don’t struggle alone. Many caregivers feel ashamed to ask for help from others. It makes them feel vulnerable as they view it as a sign of weakness. This mentality, over time, will eventually cause the caregiver to withdraw from others and delve into social isolation.
As a caregiver himself, Daryl shares the importance of seeking help especially through organisations such as Dementia Singapore who recently launched Dementia Hub, a one-stop resource portal on dementia.
“Whether it be for training e.g how to safely lift or carry another person, how to talk to PWDs and calm them down, how to retrofit or “dementia-proof” your home (Lien Foundation and IKEA had a really cool “Hack Care” series), food (e.g. food delivery services like TOUCH Community Services’ Meals on Wheels program). Or just some much-needed personal time-off. Personally, dementia daycare was such a God-send for both my parents. My dad, for mental and social stimulation beyond being glued all day to a TV set, and for Mum, time off to work, to run errands, and basically to have a life of her own as well.”
Your Story Matters
Turning his personal family caregiving experience into a family novel, the book marries Asian storytelling, dementia and family bonds. Daryl hopes that his book will continue to cultivate conversations on intergenerational communication and spark children to have genuine interest in forming bonds with their grandparents.
If you are a caregiver and would like to share your personal story to inspire and encourage others, please reach out to us at firstname.lastname@example.org.
Daryl’s book Mist-Bound: How to Glue back Grandpa is available in all major bookstores. Visit darylkho.com for more info on the book!