Last week, I attended Zeta Tau Alpha's National Leadership Conference. For those of you who know me, you know how dedicated I am to ZTA. Because of my dedication to ZTA, some people would be surprised to find that I do have a passion greater than ZTA, the Alzheimer's Association.
During one of our break out sessions at NLC, we were asked to think about a watershed moment in our life. The definition they used for a watershed moment was "critical turning points and events that shape who you are, how you view the world, and how you lead others. They are sometimes single events and sometimes a series of related events." I sat there for a long time trying to come up with an event/series of events that have had a major impact on my life. I went through some moments in my life...graduating undergrad, starting my first "real" job, getting married, graduating grad school. These were all great accomplishments, but nothing extremely life altering. Then it hit me...of course...my grandpa being diagnosed with Alzheimer's and his progression through the various stages. After it hit me, I was embarrassed that this wasn't the first thought I had. I mean, as much time and dedication that I put into the Alzheimer's Association, you would think it would be in the forefront of my brain.
Now that I had identified my watershed moment, it was time to do the rest of the exercise. I know had to define how Grandpa's progression through the disease has changed my life. There were 4 categories to discuss.
1. How has this event changed you as an individual? I now do more for others and volunteer much more of my time. It also helped me become more family oriented.
2. How has this event shaped the way you view the world? I thought I had problems before, but I realized that my problems are nothing compared to those of other people. I have much more patience and compassion for others.
3. What value(s) has this event reinforced? The 2 biggest are dedication and perseverance.
4. How has this event affected the way you lead others? I can now teach people that they can get through their problems and can help them through those. I can teach them that other things are bigger than their problems. I teach these things while also exhibiting patience and compassion.
As I shared my watershed moment and the values and lessons I learned from it with the group, I couldn't hold back my tears. That's when I realized that I am a big advocate for the Alzheimer's Association, but I haven't really shared with many people the road that lead me to that point. This is me now sharing.
At the time of my grandpa's diagnosis, Alzheimer's was not a household topic. In fact, there were lots of signs pointing to the beginning of Alzheimer's for Grandpa. My grandma hid a lot from us. Unfortunately, she didn't really understand what was happening and wasn't that supportive of my grandpa. It wasn't until after her passing that the family got a real glimpse of what was happening. I was a sophomore in college at the time. Since I was away from home and away from Grandpa, I didn't yet understand the severity of what was happening. Like I said before, Alzheimer's still wasn't talked about much, so we didn't know much about what was to come.
I'll never forget the moment that everything changed for me, the moment that I understood and vowed to do something about this horrible disease. It was in August 2003. My family, some family friends, and I all went to St. Louis for a Cardinals game. Grandpa was the 2nd biggest Cardinal fan I'd ever met; 2nd only to his mom. We thought it would be a great treat for him to see the Cardinals while he could, hopefully, still enjoy it. At one point during the game, he looked at me and asked, "What is this game called again?" That moment broke my heart. This wonderful man, who loved baseball, who loved the Cardinals even more, who helped make all of our family Cardinal fans, who had once cherished his Stan Musial jersey hanging on his wall...this man no longer remembered what the game he so loved was called.
Unfortunately, it only went downhill from there.
I know how hard it was for my family; I can't imagine how hard it must have been for Grandpa. He knew that he didn't remember things, but he had no control over it. He tried his hardest to make sure we didn't know that he didn't remember us. During a portion of this time, he would always great me with "Hey babe, how's the family?" It was his way of trying to trick us into thinking he was ok.
A major stage that most Alzheimer's patients go through is paranoia. Grandpa would hide his wallet and glasses, because he thought someone was trying to steal them. Of course, he couldn't remember where he'd hidden them, so that strengthened his fear that someone had stolen them. This also had to be incredibly hard for him.
There is also a violent phase that some patients go through. Don't be alarmed if it happens to your loved one with Alzheimer's. It is tough to deal with, but you have to remember that it's just the disease talking. They have no control over their temper anymore.
The longer you care for a family member with Alzheimer's, the more your definition of a good day changes. That day Grandpa didn't remember the name of baseball was devastating for me. Towards the end, I would have given anything to have that man back. Towards the end, if he said anything at all while you were visiting it was a good day. About a year ago, my mom and I went to visit him. During lunch, he said 2 sentences: "We need to color our family." and "She's all boilered up." An outsider looking at that would have been horrified, just like we were at the beginning. Instead, we were so happy because he was saying something, anything, and he was saying it in "complete" sentences.
What is even better is when Grandpa would say something and it completely went with what you were saying. You know in your head that it was random and a coincidence, but your heart loves it. One day, I walked into Grandpa's room and he had a Cubs hat (a CUBS hat) on. Me: "Grandpa, why are you wearing a Cubs hat? You know our family doesn't like the Cubs." Grandpa: "I bet you think I'm crazy, don't you?" That memory always makes me smile! Anyone who wears a Cubs hat is crazy! In my heart, I'll always know that he knew what I was talking about. I still think that the person that put that Cubs hat in his room is an evil person! :)
My mom and I were talking recently and came to the conclusion that we were learning about the stages of Alzheimer's along with the Alzheimer's Association. At the time, we didn't know what to expect. Things weren't freely advertised. I'm so thankful that there are now resources available that will help guide caregivers and families through the progression of this disease. I'm also very thankful that I can share my knowledge and help others not be as scared as I once was.
I'm also ashamed to admit that at the beginning, I was embarrassed to tell anyone about Grandpa's Alzheimer's. I thought that people would just think that he was crazy. It's amazing what time and experiences will do to you. Now, I shout from the rooftops about Alzheimer's. I've even been defriended on facebook for preaching too much about Alzheimer's, but I don't care. People need to know!
If you have a loved one that's been diagnosed with Alzheimer's, please provide them with major love and support. They are the same person they always were, they just have a debilitating disease. They are not stupid, so don't treat them that way. If they lash out at you, it's just the disease speaking. What they need more than anything in the world is you! It is sad to see how people's opinions of them change. I wanted to cry this past Christmas when I realized that Grandpa had received 2 Christmas cards, 1 from John & me and the other from the class that visited the nursing home. They might not realize the card is from you, but at least they can look at it, have the nurses read it, and have some enjoyment from the little token of your love.
Here is a list of examples of my dedication and perseverance, values that I learned and try to live everyday.
* Participated in 5 Alzheimer's Association Memory Walks (now the Walk to End Alzheimer's)
* Registered for my 6th Walk to End Alzheimer's on November 12th at AutoZone Park
* Raised over $6,000 for the Alzheimer's Association through these events
* Raising funds for this year's event in memory of Ed Cecil
This is the first year that I will be walking in memory of Ed Cecil instead of in honor of Ed Cecil. This will be very tough for me. I hope to raise at least $2,000 this year in his memory. To donate, please visit: http://2011walktoendalz.kintera.org/faf/donorReg/donorPledge.asp?ievent=457023&lis=1&kntae457023=B7EE3DF1A890459E97D288D6F41501D7&supId=293082473
* Lobbied for the Alzheimer's Associations at 2 Alzheimer's Association Day on the Hill
Unfortunately, this year's Alzheimer's Association Day on the Hill was just a couple weeks after the passing of my grandpa. Everything was too fresh and my emotions were too raw to go this year.
* Ran the 2010 Chicago Marathon in honor of my grandpa to help raise money for the Alzheimer's Association
* Sent countless e-mails and facebook posts to educate as many people as possible about Alzheimer's disease and the wonderful efforts of the Alzheimer's Association.
and most importantly,
* Provided my mom with the support she needed during this tough time. I can't even imagine what it's like to be a Daddy's Girl and not have Daddy remember you anymore.
I WILL NOT STOP UNTIL THERE IS AN END TO ALZHEIMER'S.
After writing this, I have come to the realization that my passion for the Alzheimer's Association didn't just start because of my grandpa's diagnosis...it started well before that, I just didn't know it at the time. Grandpa was a truly great man. He taught his children, who in turn taught their children (me included) how to be great people. Him being a great person has helped mold me into the person that I am today. Grandpa told Dad one time that God would never give you more than you can handle. It wasn't his Alzheimer's that taught me the values of dedication and perseverance, it was him.