Friday, April 25, 2014

The Truth


If you are reading this there is a good chance that you know someone who has Alzheimer's Disease. It may even be you. If you are reading this because you have stumbled on it, or you know me, or someone asked you to read it, then I ask you to read with an open heart and an open mind, or with as much of it that wants to work today. (Yes, we can joke about the disease.) I am going to toss some facts at you. Facts that are important but that can be downright terrifying.

People react to Alzheimer's today as they reacted to cancer decades ago. People often do not want to talk about it or admit that is has taken hold of someone they love. Yes, Alzheimer’s is scary. It is awful. It is a thief. It empties the mind of memories, it stops mental processes, and it steals life's moments and meaning. When it affects a loved one, most of us will do what is human. We will be fearful. We rightfully fear the disease, but fear may lead to ignorance and ignorance to denial. We cannot allow ourselves to be in denial. We cannot allow ourselves to pretend that Alzheimer’s is not happening.

Take 75 sec and watch this video. https://www.youtube.com/watch?v=waeuks1-3Z4

You done? While watching that video, at least one more person developed Alzheimer's or dementia. Do I have your attention now? In another minute and 7 seconds another person will be afflicted. And another, then another, then another …. It never stops. Never. Read on, please.

There are more than five million people with Alzheimer's in the United States at this moment and my mom is one of them. Having faced the effects of this disease head on, I have learned that most people have very little true knowledge about Alzheimer's disease. They think that victims somehow just become more forgetful. Actor Seth Rogen recently went before a United States Senate committee and stated that before he knew his in-laws, he thought that the disease showed itself via “...forgotten keys, mismatched shoes and being asked the same question over and over,” which he admits is because this is how TV and movies portray the disease. This lack of knowledge by the public at large hurts us all. The disease has become an epidemic.

I know how this works. Whatever tragedy, crisis, or disease that happens to have personally struck you or those close to you is what you pay attention to. These are the causes that we usually are willing to back: to donate money, to go on the fundraising walks, to take part in the golf outings and silent auctions. And I know that we are bombarded with requests for money for charity events all the time. After a while, none of it seems important anymore; the calls for action are just so much noise in the constant roar of information.

Am I saying that Alzheimer's Disease is more important than any other disease? Absolutely not. Each disease brings its own stories of tragedy, heartache, and pain, but among the stories are tales of individual triumphs over the diseases by people who go on living. Right now, those with Alzheimer's do not have that option. Alzheimer's Disease cannot be prevented, cured, or even slowed down. There is no happy ending. Ever.

My husband and I always tell our kids that if you are going to complain about something, you better be willing to do something to change it. I am willing to fight Alzheimer's head on. As part of that fight, I know that people need to gain awareness. Awareness of what the disease truly is. Awareness of its ferocity. So, what do I do?

I write. I write with brutal honesty about my mom and about my journey with her, our journey, hoping that my writing will resonate with others, will help some people feel less alone, will provide a no-holds-barred picture of how the disease savages its victims and leaves nothing but an empty husk. Brutal honesty, I said. I also write this way to help my soul heal, knowing that I am in the fight.

My writings are shared monthly through the Alzheimer's Association of Greater Indiana and also periodically on my blog. One of the stories I wrote about my mom is featured in Chicken Soup for the Soul: Living with Alzheimer's & Other Forms of Dementia, which is the latest entry in this series of publications on topics that affect all of us. I will have some book signings locally that will help raise money and awareness. My first one is May 17th at Black Dog Books in Zionsville, IN.

This summer my family will be participating in The Longest Day and I have signed up for Blondes vs. Brunettes. Don’t know what these things are all about?

The Longest Day is a 16 hour fundraiser, which is on June 21 this year. Before you think, “No way. I can't do anything for 16 hours,” read on and all will be explained. What really drew me to this event is that it can be done with people all over the country. Participants do not have to be in the same spot at the same time. This is perfect for a family like mine. I live in Indiana, my sister is in North Carolina, and my dad is in Virginia. All of us will do this event, on the same day, for my mom, without anyone having to travel.

Okay, more explanation. Each team member picks an activity or activities that he or she will engage in during The Longest Day, but each person does not do the activity for 16 hours. The time is divided between team members. These aspects of the fundraiser appeal to all ages, skill levels, and interests. For example, my mom has always loved art, so my dad plans to visit an art museum in my home town, where my mom lived for many years, and see an art exhibit in her honor. I probably will walk and look at flowers and gardens. These are things she not only loved to do, but still loves to do. Because she and I now live in the same town, I plan to have her walk with me, at least part of the time. If somehow she could know what we are doing that day, she would love that we are able to find a way to actively involve her in the event.

Your team registers online. You and others are able to track your progress online. They can visit your page, donate, read stories, and gather information. You also can see what other teams are doing. What a fun and convenient way to raise money and awareness for Alzheimer's!

Because of my love of sports and all things active, I have wanted to do Blondes vs. Brunettes for a few years, but my schedule didn't allow for it until this year. It’s just a good old flag football game between women’s teams to, again, help raise money for and awareness of Alzheimer's. We will have five practices and game day will commence on June 28 at Eli Lily & Co. Colonel Field. Kickoff is at 1:15! I look forward to having some fun and walking away with a few bruises, all in the name of kicking Alzheimer's Disease's butt!

So, I ask you, what can you do to help raise awareness of Alzheimer's? If we want to defeat Alzheimer’s, we can’t sit on the sidelines and ignore the truth. This disease kills more people than breast cancer and prostate cancer combined and there is NO CURE. Almost 2/3 of Americans with Alzheimer's are women and 60 % of Alzheimer's and dementia caregivers are women. Nothing will prevent the disease or slow it from ravaging our loved ones' brains. And the cost? It is said that in 2014 alone, Alzheimer's will cost our nation $214 billion and that does not even include the $220.2 billion of unpaid care given by caregivers like myself.

Even if I don't want to listen to all the statistics, the dollar amounts, and the hours it takes to care for someone with Alzheimer's disease, I can't forget that one person who gives me the courage and determination to fight Alzheimer’s. My mom. Unfortunately, and like me, almost everyone will sooner or later have a connection to someone with Alzheimer's- a dad, a mom, a sister, a best friend, an aunt, a coach, a neighbor. Tick, tock, every 67 seconds there is another victim. Help fight Alzheimer’s and find a cure before that someone is you.

If you would like to donate to one of my causes, you can click the following links:

The Longest Day: Team “Lee's Legion”

Blondes Vs. Brunettes