I remember…I remember the look on my Nana’s face when she saw family pull into the driveway. I remember the look on her face when she caught my cousin and I sneaking into the house late one summer night well after curfew.
And, I remember the look on her face the first time she saw me and didn’t know who I was.
My story is not dissimilar from the millions of people who have watched Alzheimer’s slowly take away a loved one and felt powerless to stop it. We struggle to find an answer to the question, “What can I do?” For me, the answer came in the form of making a film…and this is the story of that journey.
Going home for me has always meant taking a trip back in time, without the assistance of a Flux Capacitor-powered Delorean. My family is from a tiny, turn of the century mill town hidden in the mountains of West Virginia named Cass.
Cass is a magical place…a preserved memory of a different era complete with an old steam locomotive that once hauled timber down from the top of Back Mountain, but now takes tourists from all over the world for a ride through history. It offers us a glimpse of what life was like before smart phones and highspeed internet, and entertainment was found not on a laptop, but on our neighbor’s front porch.
For Nana, it was the only place she wanted to be. No matter where she was, she could strike up a conversation with anyone about it usually beginning with, “I’m Dess Kane from Cass, WV,” followed quickly by, “Have you ever been to ride the train?”
She would launch into a story about how beautiful it was and invite complete strangers to come visit anytime. She was so proud of this place and this community that she always wanted to share it with the world.
Though I grew up in Pennsylvania, when I look back on my childhood and the stories and events that define who I am as a person, almost all of them can be found in those mountains. It is more “home” than any other place I have lived. Whether it was holidays with my whole family, or the summers when it was just Nana and me, every trip I took home to spend time with her brought me closer to the person I am today.
I learned the basics: make your bed in the morning and turn your socks right-side out before they go in the wash. And I learned the big things that would carry me through the rough times, like the importance of community.
A walk to the Post Office was not just to get the mail, it was to check in on everyone in town and say hello. If she knew someone had been sick, it was to stop in and see how they were feeling–see if they needed anything. And when her health took a turn, her neighbors, friends and family returned the favor. They came to sit with her, talk with her, be with her.
The idea of home is a powerful thing. It can bring comfort and happiness, but it can also bring stress and sadness. Though Nana had lived on her own for many years after my grandfather’s passing in 1980, the progression of her Alzheimer’s during the last few years of her life slowly but surely brought us closer to an inevitable decision that so many families face today: what do we do when she can’t be alone anymore?
The answer to that question is unique to every family and going through that decision process with my Mom (who, after all this, cemented her place as one of the strongest people in the world) was extremely hard on everyone involved. We brought Nana to stay with my folks in Pennsylvania on a trial basis, but before we got even an hour away from Cass she was already asking, “When can I go home?”
The longer she was there, the more insistent she became. As her memory continued to deteriorate, this sense of home was the only thing she wanted. She reached a point where the patterns of daily life were no longer helping and she wandered her own house, unable to recognize the place that she had been living in for over 60 years asking the same question, “When can I go home?”
Though the nurses visited every day, and the community surrounded her with support, we made the decision in early 2008 to move her into assisted living. She went…begrudgingly, of course. The day my Mom took her over to the hospital, Nana asked her how long she would have to stay. “Just until you get a little bit better,” she told her. “Then I can go home?” Nana asked. “Then you can go home,” my Mom told her…knowing it wasn’t true, but that it was the only answer that was appropriate in that moment.
My next trip home in September of that year would be for her funeral. Though in many ways we had been saying good-bye for a very long time, her passing left a void for us that will never be filled. The morning after her funeral I took a long wander and, as I walked the streets and thought of all the stories she had shared over the years on our walks together, I was struck by how her life, including how her battle with this disease, was written all over every nook and cranny of this town.
As a filmmaker, I am always searching for projects that mean something, projects that will have the power to make an impact. During this walk around town, I started to see a story that would allow me to both carry on the legacy that Nana left behind of sharing this place, and also raise awareness about this disease in a way that we hadn’t seen before. A story that would show how it affects both those suffering from it and the family and friends around them who are watching their loved ones slowly disappear.
Fast forward three years and, thanks to an extraordinary partnership with the West Virginia Chapter of the Alzheimer’s Association, we are working to raise the last part of our budget to make not only a beautiful film, but one that we dedicate to all those who have been touched by this disease. We hope and believe that it will inspire others to take action and join the fight.
I can honestly say I have never worked harder on anything in my entire life…but, when I think about what Nana went through, I work a little harder.
When I think about what our family and friends went through while she and other members of our community struggled with this disease, I work a little harder.
And when I think about all of the people out there who have their own stories…who are dealing with this disease every day in their own lives as husbands, wives, children, grandchildren, family, friends, caregivers…I work a little harder.
Our little train keeps moving up the mountain…pushing toward production later this year and powered by an ever growing Army of Angels.
You can text ANGELS to 85944 to make a $10 donation right from your cell phone (be sure to reply YES when you get the confirmation message) or visit our website for more details.
I know the view from the top of the mountain is going to be beautiful. I hope you’ll consider joining us.