LIVING or Existing with Lewy Body`s ?? ,,,,,,,,,,, Please share
Opening my eyes after another long dark night I just knew it had been a bad one. The horrific memories of the night before came flooding back like a river bursting its banks, the horrors of people being hurt in the most awful way, being trapped in a burning building a mile high and the building swaying side to side, children, and “MY” Children fleeing from an invisible evil force a my legs turned to lead as I try to protect them, screaming out into the night in a high pitched voice, one I cannot repeat whilst awake, and I have tried, but worst of all, thrashing and fighting whilst the love of my life tries to put a pillow between us to stop any harm coming to both of us
Welcome to not my world, but OUR WORLD …………………
This doesn’t include the hallucinations where I run through the house, fighting and screaming at who I have called “The Shadow Man” as he taunts me, goads me and hangs over me like a cloak of evil, destroying my mind slowly and trying to drive me insane, whilst all the time my “Angel Elaine” follows me through the house, watching me, making sure I don’t hurt myself if possible and being there for me when my hallucinations stop and I stand there staring into space as if nothing’s happened and no idea where I am or how I got there.
When does this happen?? Some nights? Most nights Once a week?? Yes to all of the above questions, there is no pattern to this, no rhyme or reason, it JUST Happens. Every presentation I do I always say I have no idea how Elaine or any of you wonderful carers survive, but, THANK GOD YOU DO , because if you didn’t ???
“”SHUDDER “”” It doesn’t bear thinking about
Norrms, Diagnosed with dementia aged 50, just 7 years ago, have Lewy Body’s disease dementia, and so very grateful to each and every carer out there
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