Aug 232013

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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  44 Responses to “Alzheimer’s, Nana and Me”

  1. You are a kind and loving grandchild, hope they find some way to stop this horrific disease soon. My Mom suffered with this and I only hope you and your grandma don't have to experience the end stages. Keep making those memories, and do speak for her and all with Alzheimer's .

  2. you are a brave fighter. I have seen what this disease can do to a person. My grandmother died in 1992 after having it for about 2 years. That final year she didn't know who any of us were or where she was. I am now dealing with it with my grandfather. Each day is different one day he knows who I am and the next day he thinks I am my mother. It makes me feel better to see you at such a young age be such an advocate. Keep up the amazing work.

  3. Thank you for sharing.. I find that, very difficult

  4. God bless you. Your advise is worth more than all the other things "authorities" may say. You are doing the right thing, continue creating memories and bringing back old ones with pictures and music.

  5. Beautiful story, many adults can learn alot from this young man. Keep making those memories with your grandma. God's blessings to the family.

  6. God bless you!!!!!!

  7. Synott you are awesome! Keep on doing what you are doing AND enjoy being a teenager.

  8. What a wonderful young man!!!!!!!! Alzheimer's is such a sad thing. Such compassion for a young man. God bless him!!

  9. Synott, you are a very special young man…you have always and will always be in my heart…Thank you taking care of Nana your grandmother and my little sister…and remember god loves you also and will help you in the bads times. Love Aunt Sharon

  10. Beautifully written Synott. I lost my Mom after a 14 year battle with Alzheimers. I was only 30 when she died and I couldn't agree more that you need to make the memories. God bless.

  11. Your Nana is a sweetheart and YOU are precious to love her so much. She is easy to love so she makes your job easy. I don’t know you but I want you to know that the love and devotion you give to your Nana will resonate long after the night has ended. You have opened up the hearts of many who probably have not given the time they should to “their” Nana’s. I love how you love. God bless you AND God bless Nana.

  12. Bless you young man!!!! your Grandma is VERY PROUD of you –I'm sure!!!

  13. To Jaime and Matt … Please read …. I love you!

  14. My mother had this horrible disease for three years. She forgot everyone, including me. I took care of her

    til the end. It was so hard because she thought I was her ‘mom’.

    I miss her so much. I love her. No one knows this disease unless they live

    through it.

    • I agree that no one has a clue about what the families go through. They can imagine, but it is not the same. My only comfort was that my Mom was in her own little world. It is just a devastating disease for the family and care givers.

  15. God bless you for all your caring for your grandmother & for your fight for her against Alzheimer's. Not many young people would take an interest in this. You are special as is you Nana!

  16. This is one amazing young man, he has a very kind hart. His family should be very proud of him.

  17. What a wonderful story! We just laid my father to rest in heaven…..he fought for almost 5 years with this terrible disease called Alzheimer's the last weeks of his life was the worst thing I have ever had to witness! I pray they find a cure soon!!

  18. Synott, you are very special young man. Thanks for all you do for your Nana.

  19. Where can I find the alzheimer's bracelet?

  20. You are a very special young man. My dad had Alzheimer's and it was wonderful spending time with him and I will never forget those times. He passed away 2 yrs. ago and I miss him so much.
    God bless you and your Nana.

  21. You just broke my heart please enjoy every second and minute you can my mom had Alzheimer’s and her short term memory was pretty much gone but knew me I was my mom’s care giver for the whole time the Aug. 31 will be 10 months since my mom my best friend has left me. And not second goes by that I don’t miss her and hearing a repeat question over and over and asking something that makes no sense well I rather have that then nothing. Hope her tight and kiss her all the time. She might be in her own world you just have to step onto her world to help her. Tell her you love her over and over. You are awesome for this great job. I’m proud of what you wrote

  22. I was about your age when my grandpa told the family he had it but now he’s dead it’s been about 3 years. But I did all that stuff before he got worse and now I always give to Alzheimer’s association. It’s very important to me that others learn what it is and how it affects a person. That’s one reason why I want to be a psychologist so I can help family’s with things like this.

  23. my grandmother had alzheimers also, we called her g.g. she was the 2nd youngest of 11 siblings,7 of which had the disease.
    I was her full time caretaker and my aunt her guardian. we took her to movies an October fest as well as out tot eat just to mention a few. she was a vibrant woman who made sourdough donuts from scratch, cut tin cans into art sewed and so much more .in the end she had a tube in her stomach to eat and had to be washed when made a mess . I wouldn't trade
    one memory with her ,because she helped make me who I am. I miss her every day of the last 10 years I look forward to seeing her again. I am here if anyone needs to talk.

  24. My beloved father in law had alzheimers for over 10 years. When he got to the last 3 or so years, his behaviour became very erratic. We would bring out pictures of us and him when we first got married and say "Dad, do you remember when we took this picture? Look how handsome you are." and we would hold the picture next to our faces and say "Have we changed much?" And he would connect us with the people he remembered in the photos. He never got confused who I was – he always had called me babe and continued to do so until the end stroke. Even in the depths of the disease, he knew us – I think because we talked about things that made him happy and we never argued with him if he made a mistake. It didn't matter as long as he was happy. I miss him terribly and it's been 9 years since he died.

  25. Synott is one awesome dude! My Dad and father in law both had Alzheimer's and died in 2011! I miss them both ver much! You are right to help your Nana and I ma impressed with your courage and grit in fighting the worst disease I know! Only cancer comes close! Great job!

  26. This is a very heartfelt story and one that makes me cry.. Just to know that this 14 year old loves his grandma and grandpa so Much and wants to help. You don't find that too much anymore and I have to say that I hope my three grandchildren will always want to Remember me and help me in any way. I do not have Alzheimer's Disease but just knowing that this young boy is so caring is Amazing. God Bless him and I am sure the memories they make WILL last his whole lifetime.

  27. I very grown up 14 y/o. Keep up the good work! It's an important topic and message to be shared.

  28. Synott should be very proud of what he is doing for his Nana. We are facing the same problem and some days are wonderful and some days are very disconcerting. I have procrastinated about making the picture journal because I am not ready to face the time when my love one will no longer remember me, his children. grandchildren and great grandchild. I know we were blessed to have the 45 years we've had so far and I am praying that we have a few more before Alzheimer's takes over our lives.

  29. You are very brave! You have to speak for them when they no longer can!

  30. Dear Synott,
    Your awesome letter about your love and special relationship with your Nana touched my heart. I admire your efforts to help her and others by being an Alzheimer's advocate. Like you and your Nana, I have a strong bond with my granddaughter. We have been to Great Wolf Lodge, Schlitterbahn, Sea World together several times. I do not have Alzheimer's but the gene is in my father's family. I lost my dad six months ago to the disease. I have been involved in the Walk to End Alzheimer's for several years and have tried to educate myself as much as possible about the disease. Is your Nana still making speeches and if so, could you tell me where? I would like to hear her speak. I am very proud of you, Synott. I pray that there will be a cure for this insidious disease, if not in your Nana and my life time but in your life time, my granddaughter's and all those children whose families carry the gene. Thank you for your blog about Alzheimer's disease.

  31. God bless your Nana and your family!

  32. Just Great,This is Sat. and a bit of a tear day, but what a charming story, I 'm going to call my Nana and tell her I love her…..

  33. Synott, you are a ROCK STAR in the realms of Alzheimer's awareness, advocacy, and research. I always say your Nana is the brave one, but it looks like you inherited her spark. Fight on!!!

  34. Dear Synott

    You have touched my heart, your compassion, love and understanding is so magnificent in one so young. If, if only if, the world could have just a very little of your outstanding qualities I would love to live forever. May my grandsons love me as you love your Nana.

    May God shower many blessings on you and may you grow to be an amazing man.

  35. My mom has always been a bitter, mean person. Now that she has developed dementia, she is even more aggressive, mean, and almost intolerable. Noone wants to be around her. I don't know what to do.

    • I heard a dementia expert say one time, that as a loved one's dementia gets worse, you should spend less time with them. She was basically giving family members permission to reduce their own stress by relying more and more on professional caregivers (in home, or in a facility, when it's time). You want your time with your mom to be as pleasant as possible, and that may mean very brief visits. And if you are her caregiver, it sounds like it is time to get help.

  36. Sounds like an awesome kid! Keep up the good work and love your grandmother / Nana. Remember even when she can't speak anymore she will always love you!!! Love and blessings OXO

  37. synott, I've heard this story from your Nana a couple of times and it always makes me cry. Your version did as well. Richard, Chris and I are all very proud of you writing skills, your care for Nana and that you are a part of our lives. I've share your story with many of my friends. They are all very impressed. You and Nana continue your fight. You are both making a big difference!

  38. Bless you, you are an incredible human being. As an adult I am awed by your strength. Bless you and all your family.

  39. This reminds me of my grandmother, I hope the best for you and your family. I wrote an Alzheimer's piece on my blog If people could give me pointers that would be great, I'm trying to show people how Alzheimer's affects people's thinking through story-telling.

  40. really very beautiful story.

  41. What an amazing young man!

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