Tuesday, May 3, 2016

Book Review: "Surviving Alzheimer's: With Friends, Facebook, And A Really Big Glass of Wine"

I read this book in one sitting. I could have written this entire book word for word. 

Not many people understand the heartache, the long drawn out goodbye, or the need for support...even if it comes in the way of a Facebook comment. Dayna Steele understands all of this too well.

Dayna chronicles the journey of her Mother's Alzheimer's diagnosis as she goes from Assisted Living to Memory Units to Memory Homes through her facebook updates and the corresponding comments she received. This is exactly what I love about Facebook and social media in general. In a Q and A session Dayna was asked: 
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.

Facebook is also my support network. Between Facebook, this blog and the Alzheimer's Association I have been introduced to so many women, moms in particular, who are going through exactly what I am. It helps you feel less alone and what she said about it being cathartic could not be more true. I can post about Mom and it is a release, I am getting it off my chest and out of my heart. She used Facebook to keep her family up to date the way I use this blog. Because when asked 1000 times how is your mom you start to run out of good explanations for what stage she is in. And if we kept quiet about this disease it would be a disservice not just to our Mothers but the whole End Alzheimer's movement.

I wanted to highlight a few parts that really got to me.

December 13, 2013: "A simple explanation of this horrific disease: You go from beginning to infant to toddler to teenager to adult. When the "long goodbye" starts you go from adult to teenager to toddler to infant to end". She uses a conversation with her Mom where she is refusing to put on her shoes and drink her water but then offers her candy, and gets a YES please. We are in this exact phase with my Mother. My Dad walks her into daycare every day. He purchases depends. He hires babysitters. He is doing all the same things I am doing with a 5 and 1.5 year old.

April 25, 2014: "There are a lot of firsts and lasts with this. The first time you realize you will never get your special birthday cake from her ever again. The first time she forgets your name. The first time she asks how she knows you. The first time you tell your son to be sure to and get a picture because it might be the last. Yeah that one was hard". Holidays are the hardest. Last year I celebrated my birthday at their house with some of my girlfriends from Charlotte. I was hanging a birthday banner when Mom asked what it said and who was it for. I had to tell her it was my birthday all weekend. 

May 13, 2014: "Mom was just over for dinner. My aunt and uncle were over as well. After they all left it hit me, I can't hear her old voice. It is so overwhelming; I can't remember what she was like before this. Sad. Very sad." I told one of my friends this the other day and she said of course you can..but the truth is, I can't. I can't remember what she was like. I just remember this. This infantile shuffling person that has stolen my mother's mind.

I want to thank Dayna Steele for writing this book. And I want her to know I love her for sharing her story and for her love of wine. If you or someone you love is dealing with Alzheimer's I urge you to order this book today. I'm not saying that to make money, I'm saying that because not everyone can be as public as Dayna (and myself) have been about this disease. Some people mourn quietly. But this book and the comments on her posts will make you realize you are not alone in this tragic and brutal battle against Alzheimer's. And just for Flo's sake, I'm going to buy a Lottery Ticket.

(special thanks to Erin Carroll for forwarding me this opportunity!)


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