My mother died of a midbrain stroke after suffering with Lewy Body Dementia. When she could still talk she described it as being stuck in a dead body. The last week of her life, in a coma with only her brainstem functioning, she grimaced and her facial muscles made her look alternately angry and sad, and her arms (which hadn’t moved much in two years) clenched into fists and thrashed around. If we hadn’t known what was happening we could have convinced ourselves that she heard us or was upset or scared. The truth was, her body was trying to find a way to live without anything but a rudimentary brain. Her temperature rose and fell, her pulse raced and stopped, she was in Cheyne-Stokes breathing patterns 24 hours a day, and she lived a week like that with no nourishment or fluids. It was as if someone left a car with a full tank of gas running and walked away and an alien got in and tried to operate it without a clue how to do it. It just had to rev up and slow down and idle until it ran out of gas. LBD is my worst fear and my worst nightmare. I’d rather die a thousand other horrible deaths than that one. My family already knows that if this happens to me and there is no option for euthanasia I do not want to be kept alive one second longer than I have to be. It’s a cruel and dehumanizing disease and the only saving grace about it is that it kills you and doesn’t hold you in that horrific place for decades.
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