Good morning all,
I'm finally home. All the condolences have been said, the lingering, sympathetic hugs have been given and we have said our goodbyes. It was a long weekend. One filled with sadness, loneliness, grief, rejoicing, reminiscing, and camaraderie. Such is the time spent when a brother is buried.
All of these are normal human emotions, most would be concerned if at least some of these emotions were not displayed. But this is not the point of my post. You all know these emotions only to well. My point is to give you another view, that of the DLB patient. At least this DLB patient. Things vary greatly between each of us.
Of course I felt all of those emotions. Throughout my life my brother has been my hero, my best friend, one of the very few people I turned to in time of need. But I also felt terror, I felt trapped, bombarded, and overwhelmed. As my disease has progressed I have become increasingly sensitive to the claustrophobic feel of crowds, the overwhelming crush of the quiet din of the crowd, the intrusive feel of every kind touch. I feel as though every fiber of my soul is being bombarded from every conceivable direction, that the air is literally being sucked from my lungs. It is the ultimate in sensory overload to an already less than clear mind. The result is that every fiber of my being is yelling at me, "HEY! This is not good! We can't do this! Get me out of here!". Repeating, over and over again, becoming overwhelming in and of itself...
So, in addition to the normal emotions this is what we, at least I, deal with. If we appear anxious or as if we're trying to claw our way out of the situation it is because we most likely are. We're trying to breath.
That's it. That's the whole nightmare. Add that to the normal grief and loss and you have the makings of a scrambled mind.
Thanks for letting me explain,