Nov 212014
 

Grandma always made you feel she had been waiting to see just you all day and now the day was complete. ~Marcy DeMaree

My grandmother was diagnosed with the early stages of Alzheimer’s disease when I was in fifth grade. At that point in my life, I was a kid. I was selfish as all kids are, so I didn’t think twice about it. I had no idea how it would eventually affect my life, as well as my family, in such a large way.

I have a very tight-knit family, and my grammy is the glue that holds us together. I remember going to my grandparents’ farmhouse every moment I could when I was a kid. My grammy would always make me chocolate milk and a peanut butter and Fluff sandwich. We would watch Winnie the Pooh movies and color—my grammy and I both love the smell of a new box of crayons. Sometimes, if I were lucky, she would take me to the barn to feed the calves or to see the new kittens. Little did I know, these would be the memories of my childhood that I would miss the most.hands

As I grew up, I noticed my grammy changing. At first, it was just little things. She would forget where she set her book, or she couldn’t find her purse. Once again, I didn’t think it was serious. I could never have guessed how it would progress, transforming my grammy into someone I could hardly recognize.

There was one incident in particular that was my wake-up call. I remember thinking, “This isn’t a joke, and my grammy isn’t my grammy anymore. This is a serious disease.”

About three years ago, a tornado went through our town. Although it was heading straight for my grandparents’ farmhouse, it died down before destroying my childhood sanctuary. My father and I went to visit my grandparents the day after the storm, just to make sure they were okay. I went inside to find Grammy. I gave her a hug and took my regular seat on the couch across from her. We passed the time by talking for hours on end, about anything and everything that was on our minds. The power was out, and it got dark in what seemed like a matter of minutes.

Then, Grammy turned to me, and with empty eyes that stared right past me, asked, “Now you’re graduating this year, aren’t you?” I was a freshman, so I was confused why she was asking me about graduation. Grammy was the type of person who could tell you the exact date and time when every one of her grandchildren came into this world. Her innocent question caught me off guard. I assured her that no, I was not yet a senior; I still had a few years until graduation, and casually moved the conversation along.

Soon, my father asked if I was ready to go home. I silently nodded my head yes, and we headed out. As soon as I got into the car, I started to cry. My father asked me what was wrong, and all I could manage to blurt out was, “Is Grammy going to be at my graduation?”

It took him a long time to come up with a response, and when he finally did, I heard the sadness in his voice. “Yes. She may not know where she is, but she will be there, no matter what.” I looked at my father, and I saw a tear running down his cheek. I had never seen him cry. The rest of the car ride home was silent. When we finally arrived home, I went straight to my room. I locked my door and I cried for hours. That night made me realize that things were going to start changing fast.

Ever since that talk with my grammy, I have matured and stepped up. Her Alzheimer’s has progressed to about stage 3 now. She is at the point that she can’t see what is directly in front of her. When I see her get that look that says, “I don’t know where I am or what I am doing,” it’s my automatic response to help her by getting her a plate of food or easing her into a chair.

At first, I didn’t notice the strange looks I got from the other members of my family. Then, last summer, when I was cutting Grammy’s food at a family picnic, I looked up and saw all my aunts, uncles and cousins looking at me. I just ignored them for the moment and went back to helping Grammy. Later on, I asked my mother why they looked at me like that. She explained that they still picture my grandmother as the one who takes care of everyone else. They had not yet realized that the roles had switched; after years of being the sole caregiver of the family, she was the one who needed their help.


Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

Now, at sixteen, I have a better understanding of Alzheimer’s disease. My grammy’s deterioration has had a huge impact on my family and has put a lot of stress on us all. It greatly upsets me to know that one day Grammy will no longer be able to look at me and say, “That is my granddaughter, Kayla.”

At my graduation, when I am sitting on the stage waiting to receive my diploma, I will look out over the crowded gym and see Grammy there, sitting with the rest of my family. She may not understand what is going on, but she will be there. After the ceremony, I will find Grammy in the huge swarm of people, and I will hug her. I know she will forget me someday, but I am not dwelling on that fact. For now, I try to cherish the good days and to get through the bad days as best I can. She will always be my grammy and I will always be her granddaughter.

 

Author: K. Thorp

Author’s note: Since the original version of this story was written in 2011, I graduated from high school. I am happy to report that I was able to give my grammy a hug as I walked out of the gym. As my father promised, she made it to my graduation.

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

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