by Dayna Steele
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- The book chronicles your mother’s illness through your Facebook posts. Did you include every post in the book? What was the selection process like?
My co-author Heather Rossiello kept a database of every single post and every comment – there were literally thousands of comments on some posts. We went through them all after I lost Mom and tried to keep only the posts and comments that 1) Included informative information for caregivers 2) made us laugh out loud, and, 3) made us think.
- After each post you include comments that your community left. Did you pick those or did you have other people help you?
We went through every comment, sometimes two or three times, to make sure we adhered to our own guidelines above. This book wasn’t a memoir so much as a help tool for others in the future.
- What was your relationship with Alzheimer’s disease before your mother’s diagnosis? Did you have any preconceptions about the illness before you started this journey with her?
I like to think I am a fairly well educated and informed person. I knew what Alzheimer’s was and I knew it was called “The Long Goodbye.” Then the diagnosis – and I realized I had no idea how stressful, sad, irritating, confusing, etc this disease is. No one tells you the really rough stuff like the possible violence or cleaning up your own mother’s feces or any number of things like this. You also don’t realize how all encompassing it becomes physically and mentally until you actually have to live it.
- How did the support of your Facebook community impact you through this hard time?
Facebook became my support group. My Facebook community gave me ideas, information, suggestions and laughter and love. And, once I wrote a particularly hard post, I would let go of the negative emotions. It was very cathartic to write and share.
- When did you get the idea to turn your Facebook posts into a book?
Literally when so many people started commenting. “I hope you put this in a book.” In fact, the first couple of pages in the book are those words of encouragement from so many followers.
- How has your Facebook and local community supported you through the creation of the book?
Just constantly encouraging me to compile it all in a book. And giving me permission to laugh and cry and get mad – over and over and over.
- How did you decide what materials to include in the second half of the book?
The second half of the book is all resources I wish I had at the beginning. There are sections written by people who helped me along the way: a neurologist, document expert, Long Term Care insurance rep, an assisted living advisor and more. I also included a list of questions everyone should ask their loved ones and a section where caregivers and their caregivers talk about what it is like on that side.
- You coauthored the book with Heather Rossiello. What was her role in the book’s process?
I found I could not live it and relive it at the same time – it was too daunting and depressing. Heather came in about half way through the journey for a totally unrelated reason – she had some copies of my In the Classroom book she wanted signed for teachers and we met for coffee. She asked what I was working on and I told her about the book idea and my challenges with getting it done. She asked if she could take a look and see what could be done – and then did it!
- What are you hoping readers will get out of Surviving Alzheimer’s?
Someone once said to me there isn’t a users’ manual on what to do or what is going to happen when you get this diagnosis. I hope this book does become the manual for what to do and how to do it for caregivers everywhere.
- You’ve been named the spokesperson for Caring.com. How do you hope to aid those dealing with Alzheimer’s in this role? *Please note it is Caring.com not Care.com
As the Chief Caring Expert for Caring.com, I hope to be able to guide others to this great resource I wish I had known about early on. Not only would I have been able to read the reviews and make a better informed decision on where to put mom but I also would have had access to so much content for caregivers. There is an answer to just about every question you may have as well as support groups for Alzheimer’s and even more on the site. And, it’s free. Alzheimer’s is a very expensive disease and when you can find any sort of fee help, that’s the best.