Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

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  • He has a tail

    His pants and belts are projects now A lot of time is spent fiddling with them Eventually, sometimes, he gives up and lets me pull the button thru the hole, buckle his belt Today, he put his swim suit on backwards. He put his jeans on top. His drawstring for his swimsuit dangles over the… Read more

  • Tears

    They were never near before I was a tough girl Emotions were distracting, paralysing I had things to do Tears only got in the way Now, tears fall Maybe one, or two Karen read my blog so far Day 1 of being published She read the whole thing She cried for us She tole me… Read more

  • The Lewy Lean

    Its wierd Gravity doesn’t work that way He leans to the right Right is downhill He slows down But he is okay for now Its just wierd We keep walking The path we are on is uneven I am growing concerned He says he is fine But he is leaning severely from the waist, to… Read more

  • If I publish

    If I publish, share these writings in some form There must be white space A lot of it Distractions removed Pages turn slowly Reflection Allowing sensory response, allowing that response to be noticed digested converted to realization whatever that means to the reader Slowing down Focusing on the art of description has been powerful to… Read more

  • My respite

    I shower outside I take my robe off and feel the sun caress my back It’s like a golden goddess is saying I love you Rays permenate thru my skin to my soul I want to linger here, in this moment of being loved by the sun The sun understands me The sun does not… Read more

  • other people

    There are a few recurring characters It often starts with: how long before I need to move out? You should be ashamed of yourself! Where is the title to the house? Is his name on it? Our relationship is deteriorating….. There is no special time and place for this It’s just lands like a sucker… Read more

  • mustard

    Why is the mustard in the china cabinet? Why is there dog food in the coffee grinder? Why is the bamboo cutting board in the freezer? Where is my favorite kitchen knife? Why is there garbage in the recycling bin, recycling in the garbage bin? Read more

  • Family

    They care They do Some are self starters Some need stimulation, permission They do care They touch the deepest part of my heart They hold my heart in their hands, cradling the most delicate part My eyes fill with water They care They are beautiful Each in a different way A garden of vegtables growing… Read more

  • Does it matter?

    Does it matter Matt wears the same clothes day after day? Does it matter that he used to wear shorts as long as possible, now he wears pants in the summer? Does it matter that he spends a good part of the day pulling his pants up and fumbling with his belt? Does it matter… Read more

  • Slaw

    I made a beautiful slaw He put it in the dog’s dish He doesn’t know why I am pissed Read more

  • But he came anyway There is no way to kick him out So I have to accept this reality He is a bad influence on Matt Uncle Lewy wasn’t invited I want to tell him to leave But I know he will take Matt with him if he goes I can’t bear that Uncle Lewy… Read more