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Great Review of “What My Grandma Means to Say” in Fifty-five Plus Magazine

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 Houseis 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/.”

 

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“What My Grandma Means to Say” plays in Thunder Bay

Professional actors took JC’s play into local elementary schools in March through a project for which the Alzheimer Society of Thunder Bay (ASTB) received an $8000 grant from the Thunder Bay Community Foundation.

JC welcomed the new partnership with ASTB and applauded the Society’s initiative to engage elementary school-aged students in learning together about dementia through “What My Grandma Means to Say.”  ASTB donated a copy of the storybook about Jake and his grandma to each school’s library.

The project includes an art dimension by giving each student the opportunity to contribute a square that will be assembled into a memory quilt, one for each school. Here’s a link to media coverage of the program in Thunder Bay. http://www.tbnewswatch.com/entertainment/196736/Living-with-Alzheimer%27s. Shaw media posted its coverage on YouTube at http://www.youtube.com/watch?v=4_I-HKvPkuE.

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My Care Journey features “What My Grandma Means to Say”

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.

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Talking with Kids about Alzheimer’s: “What My Grandma Means to Say,” a new video.

Here’s a video that shows how to stage “What My Grandma Means to Say” as a play for elementary school-aged students. Performed last October by actors from Prince Edward Collegiate Institute in Picton, Ontario, for 200 students from C.M.L. Snider School in Wellington, Ontario, the play kick-starts discussions to which kids bring their questions, their own perceptions and their experiences about supporting someone who is living with Alzheimer’s. The production was made possible by a community partnership between the Alzheimer Society of Prince Edward County, Prince Edward Collegiate Institute and JC Sulzenko and by financial support from The Community Foundation of Ottawa and The Organix Foundation, Montreal. The March issue of Canadian Teacher Magazine profiled the video among news items on page  34. http://www.canadianteachermagazine.com/pdf/CTM-MarApr12.pdf

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“A gem of a story” says City Mom about “What My Grandma means to Say”

Do read City Mom’s review today of JC ‘s storybook. Not only does City Mom call the story “amazing” and “a gem,” she says it spoke to her on “such an intimate level.”

Her own history with grandparents who were living with dementia is “almost identical to Jake’s.” she admits. She wishes that “What My Grandma Means to Say” had been in circulation at that time in her life.

Go to www.citymom.ca/2012/01/grandma-means-helping-kids-understand-alzheimers-disease to read the full review.

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Canadian Dementia Knowledge Translation Network: a featured interview with JC

The Canadian Dementia Knowledge Translation Network (CDKTN) interviewed JC about “What My Grandma Means to Say” and just posted extracts from that discussion on its website (www.LifeandMinds.ca).

JC is delighted that CDKTN recommends “What My Grandma Means to Say.” As LifeandMinds.ca states: “it provides another excellent resource for families.”

JC welcomes that endorsement. “I know that sharing information with researchers, caregivers and policy makers in the Network will bring the focus to children, who are often drawn into the role of caregivers when a family is affected by Alzheimer’s or related dementias.”   That reality is at the heart of  the project which includes a 10-minute play, a discussion guide for teachers, the illustrated storybook about Jake and his grandmother and a video project, for which fundraising is underway.

LifeandMinds.ca is the web publication of the CDKTN.  “Established on March 31, 2008 through a 5-year CIHR grant, the CDKTN is a network for knowledge translation (KT) and exchange (KE) of research in Alzheimer’s disease and dementia. In a nutshell, KT is the adaptation of research findings into effective treatments, services, and products. KE is collaborative information sharing and problem solving between researchers, caregivers, and policy makers.” (As described on the Network’s website.)

 

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“What My Grandma Means to Say:” Get your copy through this website

JC Sulzenko’s 48-page storybook adaptation of her one-act play about  11 year-old Jake and his grandma, who is living with Alzheimer’s disease, is now available from this website.  Just send your request to info@jcsulzenko.com, and you will receive instructions on how and where to place your order. (The book is still available in hard copy and  sells for $12.95 plus shipping and handling. The e-book will be re-listed at major sites soon.)

Illustrated in full colour by Gary Frederick, the book lets young readers, ages 8-12, and their families, share Jake’s experience as he watches his grandma change from world traveller, expert birder and best cookie baker to someone who forgets where she lives and cannot remember his name.  Once Grandma moves to a long-term care residence, Jake becomes her regular Saturday visitor. He develops a routine and knows what to expect when he is with her, until an extraordinary conversation makes him think she is cured. Read More »

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JC’s Op Ed Article on talking with Children about Alzheimer’s disease

Please go to this link at the Hamilton Spectator of January 17, 2011, to read JC’s article, which appeared in papers across Canada, from the Montreal Gazette to the Calgary Herald.
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