By: Barbara Christ
My father passed away on April 6, 2018 after a 15 year battle with Alzheimer’s disease. I watched him go from an intelligent, out-going man who loved to walk five miles a day to someone who was unable to move independently or speak coherently.
Although my dad passed away in April, I lost the ability to share life with him many years before. Although I felt it while he was alive, it is only now since he’s passed that I’m angry at this disease for taking the years that I could travel with my dad to Fenway Park to see the Red Sox, or to go to the ocean with him, or to take him to see this beautiful country that he loved so much. Alzheimer’s robbed him and me of his retirement years. Not having him at my son’s wedding or my children’s college graduations (even though he was still alive) really hurt. Not being able to have him participate in other life events really hurt. There are a lot of people that have life events where a loved one can’t be there because they have passed before the event. Alzheimer’s is a disease that robs people of those life events even before they pass.
My dad was one of 10 children. I have lost two aunts, two uncles and my dad to this disease. Another aunt and uncle died of something else but both had started showing signs of Alzheimer’s before they passed. That is seven children out of 10. I’m guessing that the Perkins family has not seen the end of this disease. I have 31 first cousins as well as two siblings, two nieces, two nephews and two children who will NOT go unaffected by Alzheimer’s during their lifetime. The Walk to End Alzheimer’s is important to me because Alzheimer’s is not recognized as the killer that it is. The fact that there is not ONE SINGLE SURVIVOR is heartbreaking.
This will be my 5th year walking in the Naperville Walk to End Alzheimer’s, but my walk experience started in Lancaster, PA in 2013. That will always be my favorite Walk because it is the first and only walk where I was able to participate in with my dad. Although he didn’t really understand why we were there or what our purpose for walking was, he was more than happy to walk – because he loved to walk! He has always been on my walk team, Mission ISpossible, as an honorary walker and he always got his Champion medal for raising $500. I always looked forward to visiting with him after the Walk and giving him his medal. He will ALWAYS be my champion.
The word Alzheimer’s needs to invoke the same emotional reaction that cancer does, and I don’t think it does yet. When someone tells you that they have cancer, your first thought is that they could die. But then there is the hope that with the right treatment and care, they could survive. When someone tells you that their loved one has Alzheimer’s, I think that the first thought is, “oh, I’m sorry” but not that they WILL die from this disease and that at the moment, there is NO HOPE to be a survivor. Today, right now, a diagnosis is a death sentence. The person diagnosed will die from complications of this disease. Whether it be your body not being able to fend off other diseases or because your brain stops telling your body to even function properly. I think that people that have not experienced Alzheimer’s first hand know that eventually your loved one will lose their ability to recognize you or do things for themselves, but they do not understand that it is a slow, painful process for both the person with Alzheimer’s and the family watching. Those are the questions that I get asked the most.”How do you die from Alzheimer’s?” And the people that I answer seem shocked when I tell them. They need to understand that it is the 6th leading cause of death in the US and the only disease in the top 10 that does NOT have a prevention, treatment or cure AND that if a breakthrough is NOT found, Alzheimer’s will continue to increase exponentially until the cost of care bankrupts our healthcare system.
If you haven’t experienced Alzheimer’s firsthand yet, it probably won’t be long before you do. I walked in a Breast Cancer walk in 2008 before my Grandmother and Mother were diagnosed with breast cancer, and can tell you that it was a moving experience even before it became a reality in my life. The Walk to End Alzheimer’s is 100 times more moving because you know that almost everyone there has been affected by Alzheimer’s. It’s pretty evident during the flowers ceremony. I am always overwhelmed at the number of blue flowers that are lifted into the air. I will have an emotional meltdown the day that a white flower is finally lifted, signifying that Alzheimer’s now has a survivor! That is why I walk…to help us get to that white flower!
To register for the Walk to End Alzheimer’s or sign up as a volunteer, visit alz.org/Illinois.