Ka Wai Ola - Office of Hawaiian Affairs, Volume 31, Number 9, 1 Kepakemapa 2014 — Seeing Papa's Alzheimer's through a keiki's eyes [ARTICLE+ILLUSTRATION]

Seeing Papa's Alzheimer's through a keiki's eyes

By Lurline Wailana McGregor

Juvenna Chang had often thought about writing a children's book, but since she couldn't decide what it would be about, that was as far as she got. On the day of her retirement party from Kamehameha Schools in 2008, she started making a bucket list, and a vision of the story she wanted to tell eame to her. Motivated by her own situation as well as a children's book that TV journalist Maria Shriver had written, Chang was so clear about her idea that she immediately announced it to her friends: "My book is going to be about the relationship between a grandson and his grandpa and a child's perspective of Alzheimer's disease." Her book, W7ry Can 't Papa Retnetnber myName? , was self-published earlier this year. Chang, a graduate of Kamehameha Schools, is a lifelong educator, with both master's and doctoral degrees in educational administration. She has been both an educator and administrator throughout her lengthy career, working in various capacities at Kamehameha Schools and before that, as senior scholar with Pacific Resources for Education and Fearning, or PREF. Why Can 't Papa Remember my Name ?, a fictional story, was inspired by events

taking plaee in her and her family's lives. Her husband, Charlie Chang, a retired Army master sergeant, had owned a T-shirt printing company for more than two decades. During this time his oldest grandson, Kaiya, was born. Since the extended family lived together, grandson and Papa, as Grandpa Charlie was known, were close, and Kaiya's Papa knew his grandson's name well. When Kaiya was 3 years old, Charlie had to have his knee replaced. He suffered extensive physical pain during that time and started to heeome accusatory and forgetful, traits whieh were highly unlike him and whieh his family and doctors attributed to his pain. During the ensuing months Charlie's behavior didn't improve, and early the following year he was diagnosed with short-term memory loss. A year and a half later, his doctor determined that he was in an early stage of Alzheimer's disease. Juvenna Chang retired from her job to take care of her husband, and over the course of

the following three years he progressed through all the stages of the debilitating brain disease until he died in 2011 at age 83. With his wife as his f u 11 - 1 i me caretaker,

Charlie continued to live at home, where there were now more grandchildren. Watching their Papa's condition continue to worsen, Kaiya tried to help by doing things like putting name tags on himself and his brothers so Papa would remember their names. "My book is intended to teach children about Alzheimer's disease from a child's point of view, and that the mixed emotions of not understanding the changes taking plaee in their loved ones are valid," says Chang. "By explaining Alzheimer's in a way children ean understand, it ean help them to better adjust to the changes." Chang went back to work at Kamehameha Schools after her husband died and continued to work on her book. Maria Shriver had written a children's book about Alzheimer's disease, What's Happening to Grandpa, for middle school-age children. Chang felt that she could fill a niehe for even younger readers who need a resource and therefore geared her book to a third-grade audience. She researched how to write books for children while also learning more about the disease through the loeal Alzheimer's Association, where she had heeome an active member during her husband's illness. Robin Racoma, who had produced designs for Charlie's T-shirt business, created the book cover and the original sketches, whieh were later finished by another artist, Ronie Pios. When Chang got the first copy of her book, she read it to her grandsons. "They all had tears in their eyes as I read it to them," says Chang, "and when I finished, Kaiya's brothers said, 'So, Nana, when are you going to write a book about me?' " ■ Lwīine Waiīana McGregor is a writer, fiīmmaker and author o/Between the Deep Blue Sea and Me.

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WhyCan*tPapa Remember my NameP By Juvenna Chang 42 pages. Trafford Publishing. $19.57 softcover, $3.99 e-book. www.drjuvennachang.com.

Charlie and Juvenna Chang, holding Kaiya, Ihen a few months old, in their Kāne'ohe home. Kaiya will turn 1 2 years old this month. - Courtesy photos: Juvenna Chang

Kaiya and his Papa in 2004.