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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  • meta

    May you be healthy May you find joy May you be safe May you live your life with ease One of the gifts Cheryl Hutto gave me during my coaching sessions in 2024 was this Meta meditation The line that took me to my knees was about living with ease I could feel it, taste… Read more

  • I didn’t need that!

    Woke up to a voicemail from the Isle of Wight Sheriff’s Office Called the number provided for the deputy, got his voicemail On my way to my annual physical with my doc, sheriff’s office calls back Apparently, I didn’t show up for a grand jury hearing, failed to do my civic duty Sorry, what? Mam,… Read more

  • Gus, the therapy dog

    Gus is Lori & Mark’s dog He is a beautiful golden retriever Still a bit of a puppy, only 2 1/2 years old They came for a poolside happy hour Lori warned me as soon as Gus got into the pool gate, he would be immediately in the pool And she was right, not a… Read more

  • courage

    I run up against courage limitations in the strangest places There are many resources out there for “adult day care” or “respite” offerings Most are at senior type centers News flash: both Matt and I don’t see ourselves as seniors….but we do appreciate the Tuesday discount at the grocery and hardware store (a dose of… Read more

  • Turn, turn, turn

    I love getting into morning conversations with myself Matt’s continuing to relax in bed Sheba is in and out of the house I sit in my little corner, my nest, doing my thing Journaling, reading, digesting, conversing with myself Using my whole brain, not just the front left lobe which wants to take over and… Read more

  • nap time

    There is something about an afternoon nap Matt dozes off on the regular, in the car, sitting up right on the couch For me, that doesn’t work well…… I need the full horizontal, covers on Is it age or is it a desire to hide from the world, shut down? Probably all the above Most… Read more

  • vicarious living

    When a friend shares a wonderful piece of their life with me, it helps lift me up from my immediate circumstances Mary fully retired end of June She is traveling in beautiful places Italy’s lake region Shores of Croatia Seeing them thru pictures shared, explore, enjoy, be happy, is a gift shared Gary just shared… Read more

  • Delicious Ambiquity

    The antidote to much anguish is sheer connectedness. People are terrified by what they cannot understand, but meaning and hope are most easily found in the company of others. “Having permission to NOT find a solution has helped me enjoy the time I spend with my mom—just as she is and who she is now.… Read more

  • collateral damage

    It’s hard to say exactly when this journey began We know when we got the diagnosis, when we had enough info to frame questions, make decisions It’s been 20 months since December 2023, almost 2 years Focus has been on processing the news, learning about the disease, planning the road ahead It took all my… Read more

  • few days

    it’s been a few days since my last post Thank you to those of you who checked in We had a nice string of days that we had family with us, so we are trying to settle back into our routine No big drama……which is often the source of a post No big drama….until yesterday,… Read more

  • Matt’s lucky

    Even though Uncle Lewy is in the house, making a mess of our lives Matt is lucky Counting the ways seems therapeautic He has family who move heaven and earth to help him That definitely includes me, I’d realign the stars, sun and moon for him His sisters have been here right along side of… Read more

  • half

    How do you love parts and pieces of a person? Or how do you love a whole person, but not certain parts and pieces? I want to take an eraser and rub out Uncle Lewy Scrub and scrub Make Uncle Lewy go away Make loving Matt easier Make him loving me easier. Read more

  • good place

    At the moment, I am in a good place Same usual things are present: chair relocated to a strange location, unsure what I will find when I open a cabinet But, in this moment, I have let the frustrations I might have with those annoyances go Its my morning quiet time right now Matt sleeps… Read more

  • contract

    We are under contract to sell the Virginia house now Took longer than average but I guess the right next family wasn’t ready Close isn’t for another 45 days, so we wait We will have one final chance to say goodbye, there is still time So many great memories of family times there This journey… Read more

  • purpose

    What was I put on earth to do? Is this it? ok Read more

  • Next

    I sometimes worry about what’s next Then I stop myself Then I worry about what’s next Then I stop myself And so it goes….. Read more

  • True love

    True love is a complex emotion characterized by deep affection, intimacy, and commitment, often involving selfless giving and a desire for well-being of the other person. It encompasses both strong emotional attraction and willingness to nurture, support, and respect the other person, even through challenges. Its good to be reminded of definitions sometimes Go back… Read more

  • The harder path

    It might be easier sometimes to weald a power of attorney so I can make all the money decisions myself Things like selling the house, paying Matt’s bills, managing his money Its hard for him to do those things now We have had to make some big decisions on selling the house in Virginia I… Read more

  • What’s Best?

    I struggle with deciding what is best for Matt sometimes Some of this is because he isn’t exactly the same everyday I am learning that, daily Some is the balance of maintaining as much normalacy as possible Enabling him to do the things that he enjoys For him, that is hiking and other outdoor activities… Read more

  • Gifts

    Yesterday we met up with friends to paddle board and kayak on the Russian River I have driven by the Russian River so often on the way to Sea Ranch, but never have put in Lois and Mark suggested joining them at a particular beach, that was a gift they gave to us EB was… Read more