"Get out! My Mammy takes better care of me than you!"
That was last night- the worst so far as Casper and I deal with the ravages of Lewy Bodies in her brain. She was on the floor, next to our bed. It was the second fall in ten minutes. She couldn't get up without help, yet she slapped my hand and arm as I tried to lift her from behind.
I'd learned my lesson the last time- no more approaching from the front or even the side when Casper isn't Casper and the Casper inhabiting her body is angry. Earlier that day Casper's nurse Jenni visited, and she remarked that Casper was a "seething ball of angry." So true, that description. Casper wanted her car keys (nope), permission to go anywhere (yes- but with an escort and equipment in case she got tired), and validation that she could be who she used to be so long as Casper felt she could manage it. The conversation wasn't pretty, and Jenni told me later that I could "throw her under the bus" anytime I needed to in order to deflect the anger ball from me.
And her we were again that night. Pure, seething rage. Nothing MY Casper would ever show, much less target toward me. When we met she talked about how hard she's worked to change her approach to people. How she never wanted to be angry the way she saw anger as a child, and didn't want to be like one sibling in particular. She didn't drink, she rarely cussed, she was a prankster who loved holiday decorations and quiet time at home. She promised there would never, ever be a raised voice toward me not a hand in anger. Ever.
And yet here we were. She was on the floor. She needed help. She was, in fact, helpless. Her eyes were like daggers, along with her words. And then, the next statement:"You are tired of me. You don't love me anymore." As her brother Jay and our daughter Kerry were running into the room in response to my yells for help, the real issue, through the fog of dementia and the fear in engenders, finally explained the words.
I'm falling. I need help. I can't drive. I can't work. Intimacy is holding hands and kisses. You work too much to take care of us. I hate needing help with everything. I hate needing a bath aide. I hate raised toilet seats, fall mats, walkers, wheelchairs. I want my life back. I want you to remember me when I opened doors for you, put your coat over your shoulders, even made sure you had paper towels waiting in restrooms.
All that helplessness and feeling useless, while on the floor. No wonder you don't want me to pick you up. Add in hallucinations and delusions and the fear that you have lost your mind... Why would you want your wife of ten days to see you like this?
And so I left the room. I had a brief pity party. And then the rest of us laughed after she was safe and quiet, for five hot minutes. It was a night from hell. The morning was no better the next day. But I could laugh.
When she said she needed to get to me, I discovered i was in Kentucky, and Casper needed buckles to find me. What did I do? Asked friends on FB what buckles meant. The ideas included a horse, a Harley, and fear of Casper on a horse.
Lewy bodies are mean little critters. They will happily destroy your life as they are taking apart the brain of the one you love. They kept me up all night, and I spent lunch napping in Sun City today so I could drive safely (that's never an easy feat. An entire city of seniors on Citizen's Watch. I apparently looked very suspicious...). Tonight Casper was back to my Casper, and she had no memory or any of it. She did confirm her fear that I would abandon her as this gets tougher and her personality changes. We put that to rest the old fashioned way (you figure that out...). Then the Lewies started back. The noise came back. Her grip got stronger on my hand and arm. But this time as she was slipping into deeper and deeper dementia and delusions, I reminded her in time that I loved her, and she would never ever be abandoned. And tonight she sleeps. At least for a while.
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