Young Alzheimer’s advocate is devoted to grandmother with the disease
http://blog.alz.org/alzheimers-nana-and-me/
Alzheimer’s has an impact on entire families, not just the person living with the disease. Synott Embry-Salas, 14, knows this all too well. He lives with his grandparents on the weekends; one of them is Libby Embry, 65, who was diagnosed with younger-onset Alzheimer’s four years ago.
Read Synott’s story >>
I was 9 when I saw my mom and my Da crying, and I thought my Nana must be sick. When I asked no one would tell me anything.
Then one weekend, when Nana and I were going to watch movies all night and eat popcorn, I asked her if she was sick. She explained to me that her body was not sick, but her brain was. It was the first time I had ever heard the word Alzheimer’s.
I was so sad. I asked my Nana, “Will you forget me?” She cried and told me, “I don’t think God would ever let me forget someone as special as you are to me.” That made me feel better, but I was still upset. So, Nana said we should talk about the things that had made us happy in our life together.
We talked about all the fun trips we had taken together: Six Flags Over Texas, Schlitterbahn waterpark, Great Wolf Lodge and Sea World. We’ve traveled to seven states together!
Then we practiced all the fairy tales she had told me through the years. (We used our character voices.) And we sang all the lullabies she had sang me as a baby. Nana wanted me to remember all the stories and songs for the grandchildren she might not know in her future. I promised that I would. And, I will.
That summer, we found pictures from all of our good times and put them in an album. I will have that to remember her by, too.
If someone asked me for advice about how to deal with having a grandparent with Alzheimer’s, I would say this: Spend as much time with your grandparents as you can before the disease gets worse. You have to be strong because it will never get better. You have to be prepared for that. Study the disease; know what is going to happen; and make memories while you can.
My Nana and I continue to make memories.
She started making speeches to raise awareness for Alzheimer’s and became a national spokesperson. I started going to speeches with her so I could help her out if she needed me. I even answered questions at her speeches.
I also help out every year at Walk to End Alzheimer’s. I sell the Walk bracelets at school and give the money to the Alzheimer’s Association in my Nana’s name.
My grandmother’s family carries the gene for this disease, so that is why she works so hard. She wants to make sure her children and her grandchildren don’t get the disease.
I have made my Nana a promise: When she can no longer speak about the disease, I will speak for her. I consider myself one of the youngest Alzheimer’s advocates, and I will fight for her! She means so much to me.
About the blog author: Synott lives with his grandparents, Jerry and Libby Embry. He is 14 and is a freshman in high school this year. In addition to be a passionate Alzheimer’s advocate, he loves spending time with his younger brother, Xander.
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http://www.optimumseniorcare.com/services/alzheimerscare.php