Afterword

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Afterword

T oni Morrison said, “If there’s a book you really want to read, but it hasn’t been written yet, then you must write it.” We are so fortunate that here at Chicken Soup for the Soul we can do just that — see a need and fill it!

This book, for people who have been diagnosed with Alzheimer’s or other dementias, and for their caregivers and loved ones, provides the kind of support and advice that we believe is delivered best through storytelling. After all, mankind has been passing on wisdom through storytelling for thousands of years. I think we all learn best when we hear real stories from real people who have already “been there, done that,” so that’s what we have provided you in this collection — personal stories, best practices, coping strategies and tips from one hundred people, each facing Alzheimer’s or dementia from a different point of view. I’m sure you learned a lot and found stories that were particularly applicable to your situation.

And we are happy that we are able to support the good work of the Alzheimer’s Association with this book. More than half the story contributors asked us to give their writing fees to the Alzheimer’s Association, and all royalties from the book will go to the Association to continue its work. You can read about the Alzheimer’s Association’s programs throughout this book, as many of the story writers talk about what the Association has done for them and their families.

We are lucky that we have a variety of vehicles with which to raise money for worthy causes — our books, our comfort food line, our pet food, and our other products. Charitable giving has been a big part of Chicken Soup for the Soul’s mission throughout its twenty-year history.

Last year, we published Chicken Soup for the Soul: Raising Kids on the Spectrum, with a portion of the proceeds going to the Kennedy Krieger Institute, which helps children and adolescents with disorders of the brain, spinal cord and musculoskeletal system, including autism. That book provides much needed support and advice to parents of children diagnosed with autism and Asperger’s. And later this year, we will publish Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries. Millions of people in the United States have suffered TBIs, whether from military service, sports, or accidents. That book will have a foreword by Lee Woodruff and proceeds from book sales will help the Bob Woodruff Foundation in its work with veterans.

We don’t just give money to organizations that support research and care of people with brain injuries or disorders. Last year we also published Chicken Soup for the Soul: Think Positive for Kids, with royalties going to my coauthor Kevin Sorbo’s children’s education program, and we are also using proceeds from the 20th Anniversary Edition of Chicken Soup for the Soul to benefit several charities, including the Humpty Dumpty Institute. Humpty Dumpty runs programs all over the world promoting literacy, fighting poverty, disease and hunger, and enabling conservation programs for animals. Chicken Soup for the Soul provides support to Humpty Dumpty through all its books and other products.

This book about Alzheimer’s is the biggest collaboration we have done so far with a non-profit. The idea came about when I was a speaker last year at a book festival that benefited the Alzheimer’s Association. Kristen Cusato, then the Southwest Regional Director of the Alzheimer’s Association Connecticut Chapter, was there and she spoke beautifully about her mother, who had dementia with Lewy bodies. Kristen connected me to the Association’s national office and we started to develop the plan for this book. Kristen’s own wisdom is passed along to you in this book in story 18, which starts off Chapter 3.

Then I met Cristin Marandino, the editor of Greenwich Magazine, who lost her mom to Alzheimer’s three years ago, at age 74. Cristin is very active in the Alzheimer’s Association and she furthered my resolve to help this wonderful organization and all the people affected by Alzheimer’s by collaborating on this book. I’d like to share an excerpt from a speech that Cristin gave at a benefit she chaired for the Alzheimer’s Association Connecticut Chapter last year:

My mother was the most giving person I will ever meet, so to see so much taken from her was heartbreaking.

Alzheimer’s is an insidious disease. It crept in and slowly robbed my mom of her memory and eventually her personality. But the most painful thing is that she knew. She knew she was slipping away and that there was absolutely nothing she could do to prevent it.

Imagine being trapped under water, just beneath the surface. Your lungs are constricted and you can’t breathe, but you know — and can see — that just a few inches away there is oxygen. If you could only get to the surface. Imagine the helplessness and fear you would feel. That level of suffering is unacceptable.

The Alzheimer’s Association is helping break through the surface. They are educating healthcare workers, providing care and services and funding the research. They are a lifeboat in a very scary storm.

One gift I was given was the ability to be with my mom at the end of her battle. She had been in intensive care for ten days and was in and out of consciousness. She had not spoken for days. It became clear that it was time to bring in hospice so that she could leave the suffering behind.

When the hospice nurses arrived, she was very aware that they were there and that it meant we gave our permission for her to move on. The doctors said that it would be at least a few days until she passed away. Just two hours after the hospice nurses arrived, my mother opened her eyes and looked at us and said: “I love you.”

She then literally took her last breath.

I share this because it is a powerful reminder. It is a reminder that although Alzheimer’s robs its victims of so much, it does not — and can not — rob them of their spirit.

Cristin’s speech is a powerful reminder of why we are all working so hard to make life better for those affected by Alzheimer’s and other dementias, and why we are putting so many resources into finding a cure. With this book, we at Chicken Soup for the Soul are making our own small contribution to this cause.

~Amy Newmark

Publisher and Author

Chicken Soup for the Soul

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