Retirement Hot Air Balloon Ride, Age 62
Today I was interviewed for a newspaper article promoting the upcoming Columbus Walk to End Alzheimer’s. We spent the better part of the hour talking about my experience in dealing with this horrific disease – the way it crept into our lives, the way it took hold of my beautiful, funny, independent mother, and ultimately, the way it rewrote our life story.
This evening, as I sat down to send the reporter a couple of things she asked for, I realized something. It struck me that I was trying desperately to show this stranger exactly who my mom was before Alzheimer’s as well as the precise manner in which this vile monster attacked her.
I was attempting the impossible. No matter how many stories, photographs, or videos I share, I will never succeed in conveying what I want so badly to convey. There aren’t enough words or pictures in the world to describe the havoc this disease wreaks on everyone it touches.
Following the example that Mom set, I try to focus on the positive. Her motto had always been, “If I don’t laugh, I’ll cry.”
I tell caregivers that it’s okay to laugh; in fact, sometimes laughter is the only thing that gets us through the day. I tell them to live in the “now,” and savor the time they have left with their loved one. I try to be upbeat, providing some sense of encouragement and hope because I believe attitude is critical to overall wellbeing. And the reality is that despite all the pain and heartache, there are still joyful moments to be had.
Circle of Life, Age 76
The other side of the coin, however, is that this disease is loathsome, and it’s unrelenting. Over the course of a typical Alzheimer’s journey, we often witness the unthinkable; things no one should have to live through (as the person living with Alzheimer’s) or witness (as the family caregiver). I can’t imagine another disease as unpredictable and emotionally draining. At times, it’s a living hell.
How can one possibly tell this complex, gut-wrenching story in a manner that renders understanding in even the most inexperienced bystanders? I suppose we just do the best we can and then let it go realizing the story is ours and ours alone. No matter what words or images we choose, we’re reaching for the unreachable. Finding a way to fully articulate this experience remains as elusive as the disease itself.
“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.” ― Brandon Sanderson
Back in 2010, I decided Thanksgiving would be just like old times if I cooked the traditional meal at Mom’s residential memory care home. That would solve everything; I actually convinced myself that if I tried hard enough, I could create holiday utopia. 
I was crushed, but I had broken the cardinal rule of dealing with dementia – I had created a fantasy that would have been impossible to live up to under the most ideal of circumstances. Simply put, I set myself up for major disappointment.
Set aside some quiet time to spend with your loved one on Thanksgiving. Prepare visitors ahead of time, especially if they aren’t accustomed to dealing with dementia and its challenges.
The Long and Winding Road... 