Here are quotes from another great review of JC’s book for children about Alzheimer’s and the link to the site:
“Read To Me, a new series on Open Book, showcases those magical children’s books that kids will ask you to read multiple times, and that you’ll love reading…
THE BOOK: This book, perfect for children in grades 3 and 4, is comprised of characters who share the feelings and questions families face when dealing with the challenges of supporting a loved-one with Alzheimer’s disease and dementia.
WHY KIDS WILL LOVE IT: The relationship between the boy and his grandma is one many children can relate to. The abundance of anecdotes and descriptive narrative provide ongoing reassurance for young readers. The main character, Jake, uses a conversational tone, creating a connection with the reader and a safe place for information and discussion about a sensitive topic. Children can relate to Jake, which builds trust and the strength to talk about what they’re feeling. The illustrations and the dialogue bring Jake to life, as well as his mother and grandmother, enabling children to reflect on their own experiences and family situations while reading the story.
WHY GROWN UPS WILL LOVE IT: This is an intimate story about what children can experience when their grandparent is living with Alzheimer’s disease and dementia. What My Grandma Means to Say encourages family discussion about the challenges associated with the care of a loved one. This story takes the reader on a journey with Jake through his experiences with his grandmother. This story concludes with a list of frequently asked questions to provide further information and guidance for readers.
“Although children can’t have Alzheimer’s, millions of children suffer from it, as they watch beloved grandparents descend into dementia. Other family members may struggle to explain what is happening. Help is at hand with this book, which tells the story of Jake, his mom and his grandmother, who sometimes needs Jake to explain What My Grandma Means to Say.
“Written by Canadian author JC Sulzenko and published by General Store Publishing House, the book is a high-quality paperback. Not exactly a chapter book, it is divided into readable chunks. A dozen or so illustrations by Gary Frederick add charm.
“It wouldn’t be accurate to say that this is the first book for children with Alzheimer’s in their family… What sets this book apart is the voice of the narrator, a voice which author Sulzenko said pushed her out of the way when she began writing the play. In addition, few books for children have factual material of the breadth of that which Sulzenko includes.
“Just so that you won’t be caught unawares, the informative nature of What My Grandma Means to Say does not negate its emotional wallop. It’s a rare reader who won’t shed a few tears before the final page.”
JC’s storybook for children and their families about dementia was just reviewed on-line by Together Magazine at www.togetherfamily.ca/news/what-my-grandma-means-to-say-by-jc-sulzenko/.
The review states that this book for 8-12 year olds and their families provides “the perfect way of exploring this dramatic change to a family as it follows twelve-year-old Jake through the discovery of his grandma’s recent disease….” Here are other quotes from the review.
“JC Sulzenko portrays a brilliant point of view on an issue so common that Sulzenko says that an estimated one in eleven Canadians over sixty-five will be diagnosed with Alzheimer’s or a related form of dementia. This and many other facts are provided in the back pages of her book under a FAQ section about Alzheimer’s.
“The story is comprehensive and a lesson to anyone who may have to deal with any similar situations. What My Grandma Means To Say is good for any parent who isn’t quite sure how to explain the changes that are about to come.”
Copies of the book are still available from General Store Publishing House and on-line through Chapters/Indigo and Amazon.ca. An ebook of “What My Grandma Means to Say” will be published this summer.
The current issue of Fifty-Five Plus Magazine at newsstands and on-line features a fine and sensitive review of JC Sulzenko’s book for children and families, “What My Grandma Means to Say.” Here is the link to the article: http://www.fifty-five-plus.com/intentional_grandparenting_-_grandma_and_dementia.
In their column “Intentional Grandparenting, Peggy Edwards and Mary Jane Sterne agree with JC that when a grandparent or relative has dementia, it’s a family affair.
Here are some extracts from the review:
“Since life expectancy is increasing and advanced age is the number one risk factor for Alzheimer’s disease, the number of people who have it will grow significantly in the coming years. This means more and more families will face such challenges. Three and sometimes four generations will be involved. Muma’s children who are all in their 60s are struggling with how best to cope, as are her grown-up grandchildren and their children—Muma’s great-grandchildren. Children, parents and grandparents will all benefit from increased understanding and open conversation about what everyone in the family is experiencing when a loved one has dementia.
“The story is in a style that engages children right away. Jake shares his story as he watches his grandma change from awesome traveler, bird watcher, teacher, friend and brownie-baker to someone who can’t cook anymore and does not remember his name or where he lives. He talks about his feelings and frustrations. Jake says:
‘I have a story to tell you. It’s a story with a lot of truth in it. Once you’ve heard it, you can make up your own mind about whether it leaves you a little happy, hopeful or sad—or a mix of all three. That’s up to you.’
“Anyone who has lived with Alzheimer’s disease will relate to all of these feelings. And that is partly why it is so hard to talk about. JC suggests that we use a realistic and inclusive approach when talking with children. ‘Kids are up to it’, she says. ‘They need to know that the disease is not curable and that there are limitations on what they can do. They also need to know that they are welcome to be a part of what happens.’
“JC is encouraging us to open the door and be brave enough to engage in a meaningful way with the children and grandchildren in our lives who are affected by dementia in the family. The book also provides answers to frequently asked questions and a list of sources for further information to assist families and children in learning about Alzheimer’s disease and related dementias.
“The book –beautifully illustrated by Ottawa’s Gary Frederick and published by General Store Publishing House–is available at the public library, local bookstores (I bought five from Mother Tongue Books on Bank Street to give to family members) and online at www.chapters.indigo.ca/ and www.amazon.ca/.”
JC’s engaging interview with Open Book Ontario appears at www.openbookontario.com. The interview offers insights into JC’s writing process, with a focus on her play, “What My Grandma Means to Say” and how the book adaptation evolved from it to create the back story for Jake as Alzheimer’s changes relationships within his family. The interview also reveals some of the writing strategies JC uses in leading workshops for emerging writers of all ages. Thanks to Open Book Ontario for profiling JC and her work this way.
In the March/April issue of Capital Parent Newspaper appears a great feature on the YouTube video of the pilot performance of “What My Grandma Means to Say.” The paper is available free at Ottawa-area newsstands and also can be read on-line at http://server14a.pressmart.net/capitalparent/index.aspx Go to page 6 to read about the play.
For family caregivers, there can be no better site than Bart Mindszenthy’s www.mycarejourney.com.
Bart is one of Canada’s leading caregiver advocates and co-author of the best-selling book, “Parenting Your Parents.” The site is very user-friendly and provides family caregivers with a rich source of information and practical strategies to help them manage the challenges they face in caring for someone dear to them.
JC is very pleased that “What My Grandma Means to Say” is now listed among the resource books on this first-class site at http://www.mycarejourney.com/blog/?page_id=1053.
Daytime, a talk show on Channel 22 in Ottawa featured an interview with JC on Monday February 6. The show aired from 11AM-12 noon, at 5:00 PM and at 11: 00 PM. Here’s the link to the interview: http://www.rogerstv.com/page.aspx?lid=237&rid=4&gid=90689. The co-hosts explored with JC how the new video of a performance of the play “What My Grandma Means to Say” by high school students for elementary school-aged children enables both age groups to discuss Alzheimer’s disease. To screen the new video of the play, see below.
On Tuesday, January 17, at 1:00 p.m. (EST) Dr. Gordon Atherley from Toronto interviewed JC to learn how “What My Grandma Means to Say”, the play and the storybook, can enable family discussions about Alzheimer’s disease and related forms of dementia. Here is the link to the broadcast on VoiceAmerica:
Dr. Atherley invited JC to come on his program after reading one of her articles in the national media about the importance of including children in family discussions when someone in that family is living with Alzheimer’s disease. So often, families find it very difficult to speak among themselves about what is happening to someone about whom they care. So often, the need of children to understand their place in such a situation is not given attention by health care providers.
The discussion was far-ranging and included the important perspective offered by Kristen Irvine, a professional personal care worker who is very involved in supporting her own grandmother who is living with Alzheimer’s disease.
Having education programs in schools that focus on Alzheimer’s and the use of “What My Grandma Means to Say” in training health care providers were some of the issues which arose during the discussion.
At the site for the program is an e-mail address for comments on the broadcast which Dr. Atherley welcomes.