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Starting Family Conversations about Dementia with “Mist-Bound: How to Glue Back Grandpa”

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“Eyes, she had been told, are windows to the soul.

Were his windows just misted over? Was Grandpa actually inside, standing behind the clouded glass, knocking back at her, calling out to her, behind the fogged-up frames?

Or, instead of a window, was he underwater, trapped beneath a frozen lake, desperately trying to break through the layers of ice? Was he struggling, reaching out to her – her – a distant murky shadow from the surface out above?

Was he gasping for air? Was he screaming for help?

Scratching, clawing, banging from behind those misted windows…from where no one could hear you scream?

Was grandpa already broken?

Had he already…drowned?

Alexis shivered.

No, I refuse to believe that. You’re still in there and we’re going to pull you back out.”

This poignant yet gripping passage from Daryl Kho’s debut novel for middle grade readers, Mist-Bound: How to Glue Back Grandpa (“Mist-Bound”) demonstrates how works of fiction can sometimes be more powerful than non-fiction text in helping children to grasp difficult topics and themes. Published by Penguin Random House SEA and inspired by Daryl’s personal experience with his dad’s dementia, Mist-Bound is a good topical read in conjunction with World Alzheimer’s Month this September.

Understanding dementia

Dementia is a growing issue for many families today. It is often difficult to talk to young children about it in an insightful and thoughtful way. Through its premise, the book aims to be a starting point for family conversations, generating greater awareness of dementia (and dementia care) amongst the younger generation.

Mist-Bound is one of the rare works of fiction in this region, aimed at young readers aged 8 to 12 years, that features this topic. This child-friendly allegory of dementia tells of a little girl named Alexis, who races against time to find some very unusual ingredients for the Memory Glue needed to restore the shattered memories of her grandpa. Her search takes her to the enchanted land of Mist, where the fabled creatures from her grandpa’s folktales are alive in the flesh.

The thief of time

Daryl shares what inspired his story:

Writer Amadou Hampâté Bâ from Mali said that when an old person dies, a library burns down. Similarly, when a grandparent suffers from dementia, his or her life’s library gets set on fire. I experienced this first-hand in 2009 when, shortly before the birth of my only child, Alexis, my dad was felled by a second, major stroke. It took away his mobility and independence, and also caused vascular dementia.

The dementia robbed him of his memories and personality. My dad was my best friend. He was a cheerful, jolly man who could hit it off with any stranger. He was like a human Waze, or Google Maps. He could reproduce in detail the maps of nearly every small town he’d driven through, complete with traffic lights and landmarks. So, it was cruel irony that this strength – his photographic memory – was what dementia stole from him. It also reduced him to a quiet, depressed recluse; the opposite of the social butterfly he used to be.”

“Saving” Grandpa

This became Daryl’s main motivation to pen Mist-Bound.

“I felt immense regret that my daughter and her Grandpa never got to truly “meet” each other before the “mists” moved into his mind. The story was also a chance for my daughter to have an adventure with her Grandma, since they live in different countries and rarely see each other. Sadly, my dad’s condition continued to decline. He passed away before the book could be completed and read to him. I almost abandoned the project, but I’m glad I saw it through, as each time a child reads the story, it is a chance for Grandpa to be “saved” over and over and over again.”

Supporting our loved ones

We asked Daryl what he thinks our makchic readers can do for a family member with dementia. Readers with kids may appreciate the parallels drawn by Daryl between adults living with dementia and young children.

Daryl reflects, “Old age can be likened to a second childhood. As a baby or toddler, you’re pushed around in a pram and then in a wheelchair much later on in life. You sleep in a cot as an infant and when you’re old, you may sleep in a medical bed with railings. Babies wear diapers and you may also wear adult diapers when you’re old. Day care is available for both toddlers and the elderly. There are toys for kids, so why isn’t there a Toys R’ Us for elderly people?

Typically, care givers tend to sit older people living with dementia in front of a TV set, when what they really need are good toys and activities to keep them stimulated. For example, simple games that require them to practice hand-eye coordination, like “whack-a-mole” or handheld puzzles where you have to sort coloured beads into compartments by moving and sliding these around. Paint by numbers or connect the dots activity books are good too, or elder-friendly tabletop gardening kits. You might also like to get them exercise equipment like resistance bands or step machines. You can do these activities together with them.”

The glue that holds us together

“It would be great too if children can read a book like mine to their grandparents, especially those who have reading difficulties because of dementia, and then discuss the book as a family. Rather than a “children’s book”, I’d like my book to be a seen as a “family novel”, much like the “family movies” that we watch. A book about family, for the family to enjoy together. Because ultimately my book’s message is that the strongest “ingredient” are the bonds of family. It is family that keep us glued together.

Hopefully, in this way, children will be also encouraged to spend more time to build stronger bonds with their grandparents. Children should seek out the wealth of family histories, rich memories and profound life lessons that grandparents can share before it is too late.” Daryl adds.

Highlighting Asian storytelling

Mist-Bound is a welcome addition for parents seeking books with localised content. Featuring beautifully illustrated folktales, fables and mythical creatures, this book is a celebration of Asian stories and storytelling.

Many local children tend to be more familiar with Western myths and mythical creatures. Daryl hopes that his book will spark curiosity amongst Asian children to learn more about the myths and legends from their own backyard; drawing upon the collective memories of their family members and continuing to keep these local stories alive.

Cultivating the conversation

To help families gain a deeper insight into dementia, do check out the following websites and resources

Photos courtesy of Daryl Kho’s personal collection and illustrations (cover and book art) by SillyJellie.  To learn more about Mist-Bound, visit http://darylkho.com.

 

Li-Hsian left a career in corporate communications to become a full-time mum to twins. She is learning new things daily as she tries to balance the romance of motherhood with the messy realities of her latest role. She is also currently the co-facilitator of the Art Discovery Tours for Kids and coordinator of children's programmes at the ILHAM Gallery in KL.