Today was one of those days where any strength and conviction I thought I had went right out the window. My daughter and I spent a few blissful days in Chicago for Thanksgiving, and I knew returning to reality would be no picnic. However, I wasn’t at all prepared for this humdinger of a homecoming.
To be honest, I’m not sure what tomorrow holds. Have you ever felt like you didn’t want to go to sleep for the sole reason that you didn’t want to have to wake up? That’s where I am right now. At one point today, I stepped outside to take a phone call and found myself walking aimlessly, tears streaming down my face. Somehow the freezing cold air was comforting; I could have kept right on going, walking for hours. Getting lost for the next several years sounded like a pretty attractive option.
I’ll be on the phone first thing tomorrow morning trying to formulate some sort of plan – again. The meds are not working, and today I felt a level of desperation that I haven’t experienced in awhile. Complete and utter helplessness and hopelessness. As I sat and tried to console my inconsolable mother, I felt like a mouse in a complex, convoluted, never ending maze. No matter which way I turned in my mind, I hit a dead end.
Memory Loss: Just the Tip of the Iceberg
If I don’t do another worthwhile thing, I’m determined that educating the world about Alzheimer’s and dementia will be my life’s mission. The perception that these horrific diseases are primarily about memory loss has got to be replaced by an understanding of the absolute torture they force upon their victims. Alzheimer’s is not forgetfulness or senility, and it is most certainly not a normal part of aging. This debilitating disease is cruel beyond words, and watching my mother suffer as it ravages her mind and body is brutal. I’ve never felt so helpless.
Today, as I listened to her tormented screams and watched as she hit and pinched herself, I was completely powerless. It continued for hours on end until she was absolutely exhausted. So worn out that she was barely able to sit up, yet she couldn’t settle down. I don’t even know how it’s physically possible to be quite honest. And then, during a moment of clarity, she uttered two of the most heartbreaking words I’ve ever heard. “Help me.”
I can hold her hand, stroke her head, and tell her over and over again that I love her, but it’s not enough. If I’m lucky, I can provide a moment of comfort here or there, but her suffering continues. The look of anguish on her face is enough to make anyone cry an ocean of tears. This disease is wretched and unfair. What is its purpose? Why must it exist?
First Step: Understanding
I suppose I’ll likely spend the rest of my days searching for answers to the questions that weigh on my mind. But in the meantime, I can only hope that sharing our experience will help others to understand the havoc this disease wreaks on its innocent victims. Simply put, not finding a cure is just not an option. No one should have to suffer this way…no one.