Almost 20 years ago it was safe to say my family slowly began the new process of letting pre-Alzheimers memories ring clear, while all of the memories we were yet to make with my grandfather as he progressed with this disease would soon become the memories we worked to remain foggy. You don't want to remember the moment they lost their way. The pain they felt when they could no longer provide for themselves. Or the confusion that sets in overtime, as they recognize your face, and forget your name. Soon your face too, will become a distant memory. This may seem difficult, but when you love a family member with Alzheimer's, you know this, is just the beginning.
When I was younger I thought my papa was the mysterious man with the newspaper in his hand and Nascar on the TV every single Sunday. He was also the first person to explain to me what a dragon fly was, and helped make it a little less terrifying to this little girl who was curious why not all dinosaurs were truly extinct. I'll never forget being that little girl in his arms when we went to his house, so excited to see my "Donald Duck." It was in our efforts to remember him throughout the years, that I really got to know him. During that time I found out a few things. He was a local legend as a wrestling coach... matter of fact, that very newspaper he was reading wrote about him many times. He was highly admired as teacher and coach for many sports, to the point where the amount of letters and words written to and about him are truly inspiring. After learning this I'll never forget years ago when I found the Dayton Daily News article with my papa's face plastered on
the front with the words "He's the Dean." He became something else to me in that moment, something I wish I could tell him, and now he will finally know. My papa, as my mom would say, "the leader of the band."
In my heart I grew to anticipate all my papa would forget. It went from him holding me in his arms as a little girl, to me holding him in mine as he would use all the strength he could as my mother helped him drink the one thing he never forgot he loved... a strawberry milkshake. For years I wondered why my papa had been chosen to make this journey. For years I questioned why something like Alzheimer's could even exist. Why would a man with such a full life, be set on a path to spend his last years forgetting it?
It will never be okay that this exists. It will never be okay that such an amazing man missed so much with us. But we are a family full of love, hope, and fight. When we knew he would not be the first to survive this, it became evident to support this cause, so that someday someone's papa can.
Many more than you may realize are effected by this disease. The wife. The daughter. The son. The sister. The brother. The nurses making less than they should to make sure my papa was comfortable as his memory faded away.
For years those Sundays that used to be spent with Nascar races became the day my mother would sit beside her father and feed him lunch. My dad always by her side. What I want you to hear is that this is not just a room within a facility my papa spent his last years in, this is a home for so many to wonder the halls, as their memory fades away. As you are buzzed into the Alzheimer's wing you're often times greeted by somebody's loved one, who has no idea the difference between you and their family member. When that happens, you realize in this community, in this fight, dividing lines and differences no longer exist, because you are all connected now... you are all a part of this journey together. Never once did I see a neighbor to my papa and not wonder about what time or what day their family member came to see them in effort to support them as they slowly passed, and at what point would it get to be too much to bear? You know at some point before they are gone you have to let them go. You have to step back, and visit less. You have to, because this is not who they are, and certainly not what they should be remembered by.
"A world without Alzheimer's, and all other dementia."
We see it. We dream it. We know it is possible. In their memory, we help others understand. This may never touch you by blood, but by compassion, it can encompass you. We all remind each other often of our freedom of speech and independent voices, my papa lost his a long while ago just as someone elses loved one did... it is in my greatest hope, that he passes in one of the final waves this disease will ever make.
I sometimes wonder why we call it "the walk to end Alzheimers." At the end of this journey with my papa, I realize this is because Alzheimer's is not a run. It is a walk. Where every step is a new lesson, you hope to only have to teach until this cure is found. Alzheimer's does not progress overnight. Alzheimer's can claim 15 years or more of your life, slowly and fully in which time your loved ones endure a slow goodbye to you. Alzheimer's, a reminder to remember, and a bigger reminder to support, love and care for one another, in these moments where we are blessed enough remember.
So this one's for you papa. The teacher. The coach. The hall of famer. You were always there to cheer on your team. Always there to offer your wisdom. I wish what I know about you now, could have come from you, but I am forever thankful that for so many, your impact rang among them first hand. And I'm sure we can talk all about it, someday when I get there.
I feel so happy for you now, that you can finally remember the amazing man you are, and all the lives you've touched.
You're a man who's put in his time, and now it's your time to live again.