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.
The Long and Winding Road... 
I am so grateful for the emotional honesty with which you told your story. It’s what drew me to you and your work. That and my memory of my mother’s death from Alzheimer’s in 2007. By the time her heart gave out, there was nothing left but a bony comatose body in a fetal position. The worst heartache for her happened years before. It was a nightmare.
Having Vic die a year after my mom gave a clear comparison. His body was suffering horrible, but he was himself and even his very best and most developed self to the end. That was a gift and I knew it.
Please keep telling your story. It helps everyone, including you.
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Thank you for you kind words and continued support, Elaine. It’s interesting, even as my mother fell further and further into the haze of Alzheimer’s, her body remained very strong. It really wasn’t until the last few months when she stopped eating that she became physically weak. Even then, it was nearly impossible to keep her down. She wanted to be up and walking constantly, and by then she was a huge fall risk.
Conversely, as my dad’s physical condition has declined, his mind is as sharp as ever. I must say, after witnessing both, I would much rather the latter. If losing one’s mind meant being completely oblivious to the situation, it might be different. However, I’m convinced that almost until the end, my mom had moments of clarity that were absolutely agonizing for her. I’m certain that she had a very strong sense of what was happening to her, and I can’t imagine what that must have felt like…
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