
Dayna
Steele
Author of Surviving Alzheimer’s With Friends,
Facebook, and A Really Big Glass of Wine
1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7.
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.
8.
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! (book link )
9.
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.
10. 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.