Lauren With a Side of Lewy

Lauren With a Side of Lewy post page

By Online Dementia JournalSeptember 15th, 2020

Lauren With a Side of Lewy


by Lauren U,

PAC Core Team Member

Everyone in the house is asleep except me. Eddy dreams and the dogs rest in peaceful slumber. All I want is to sleep. The house is full of activity even when it appears uninhabited. The howls and moans and whispers and pounding and laughter keep me scared and awake. They keep reminding me that all is not safe nor well. Reassurance means nothing if it doesn't stop the noise in my head, in my home, in my world. I only want to sleep. Nightmares lose their power once awake. There is no relief from the fear when it is provided for daily consumption. I cannot chase a monster I cannot touch. I cannot keep stuffing the edges to keep them out when it has been proven unsuccessful. Up and down. Up and down. All of the banging on the walls, groaning on the staircase, mocking me in my home and daring me to step forward is their daily task. I copy their words but don't know what I mean. I only want sleep.

8 Comments on “Lauren With a Side of Lewy”

  1. Blessings to you Lauren for sharing to help us to begin to understand the LBD world. My heart aches for you, but you are doing so much good. I wish I could hold your hand if it would give you some rest. Virtually, that is – ugh!

  2. i would come up to you and tell you I’m right here everything is going to be okay would you like a glass of warm milk and a snack and i’ll stay with you for a while and keep you safe.

  3. Ditto Sydney’s comment. I cannot begin to fathom what you experience. Bless you!!! Especially, in the night…

  4. This is so incredibly powerful, Lauren. I wish I could help you sleep, but I can at least tell you thank you: You gave me a better understanding of what keeps you awake at night. I know it will be helpful to the understanding of so many of my nursing staff walking the halls in facilities everywhere.

  5. Dear Lauren,
    My father suffers from Lewy Body. Your Journaling helps me understand what he is going through. Thank you very much.

  6. Bless you Lauren, and thank you for sharing your night’s insights. How so many of us wish there was a way to help with those awful LONG nights for you and so many others. I hope the work you do with/for PAC helps you cope, you are helping so many others.

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