This is a love letter to all the heroes out there. The ones who should be getting parades in their honor, monuments to their glory and applause everywhere they go. They are the caregivers for someone they love with memory loss, and I can promise you that not one of them is living a life of their choosing. Somehow, someway, everything else in their lives becomes subordinate to Alzheimer’s disease.
Once you’ve been touched by Alzheimer’s disease, it begins to color your world in ways you’ve never imagined and expects you to deliver in ways you could have never expected. I’ve been re-reading the book, The Power of Now by Eckhart Tolle. I seem to get stuck at some point every time I pick it up. It’s a difficult concept for me — that we are NOT our thoughts, our essence — our true selves is something not controlled by our minds.
Try telling that to someone who is losing their mind — steadily, surely, like death in slow motion. Tell someone with Alzheimer’s disease that we are not our thoughts. We value what is rare in our culture — oil, diamonds, certain wines — if it is in short supply, we cherish it. For someone losing their memory, thoughts are more valuable than all the world’s treasures. They hold the memories being stolen by the thief called Alzheimer’s who breaks into your brain and randomly begins to rewrite your version of your life. It’s like being asked to count backwards and you know you are a getting closer to zero.
Eckhart Tolle says in his book that the trick is to be able to detach from our thoughts and observe the thinker. It’s all part of the letting go process that is so difficult for us to do — to trust that the universal power knows what it is doing. Honestly, I struggle with this. Life’s mysteries are nowhere more profound than when trying to explain this cruel disease.
But heroes don’t worry about explanations — and they don’t wait. They take action — they do what is necessary and they do it fearlessly (or at least it seems to outsiders) as Franklin P. Jones wrote: “Bravery is being the only one who knows you’re afraid.”
Heroes keep moving forward — like the wife who is up at 2 am again because her husband is wandering and she’s worried and exhausted. Or the daughter who spends every lunch hour at the office searching the Internet trying to find answers; trying to find hope. Or the ones who quit their jobs so they can move back home with mom and dad to help their parent die. The heroes are the ones who look in the mirror and wonder where they will get the energy, the patience, the perseverance and the sanity to make it through just one more day.
As a caregiver, what seems routine to others may be terribly frightening to you. Others may sympathize with the inconvenience and emotional toll, but can they identify with the icy terror of such a responsibility? Can they possibly imagine the long and scary road most caregivers look down every waking minute? A road that just goes on and on, never slowing for a respite, an oasis, a weigh station or rest stop? I know friends, colleagues and loved ones make an honest effort to “get it” but in reality, it takes another solider from the army to understand how heartbreakingly lonely it can feel.
So, this month especially, I extend my admiration and my heart to those brave souls who show up for duty every day. Having been in the trenches with you, I know that caring for someone who is forgetting is sometimes a hellish existence. And I also know it can be the transformative gift of a lifetime. Worthy of a hero.