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.

  • New beginning

    Today will be a new beginning Courtney will be arriving mid morning It’s been several years now of handling Uncle Lewy mostly single handedly I have had the blessing of some respite along the way to be sure, for which I am extremely grateful Respite, till now, this new beginning, came once in a while, Read more

  • Most frequent word

    “What?” has been, for quite some time, the most frequently used word in our home Mostly my fault, my heredity hearing that went to shit in my late 40’s Matt mumbles too, so we are co-conspirators in this trouble My hearing aides are currently going on the fritz…..time to replace them, that isn’t helping at Read more

  • Sea Ranch Myth

    Matt had often mentioned that the land where Sea Ranch is now was a Dole pineapple plantation before I never really questioned it, I might have even repeated it I figured with his dad’s connection, his family’s involvement, he’d know At the place we rented this weekend, we were hanging out, chilling We had gone Read more

  • Sea Ranch Too

    The most difficult task was to find a way for people to inhabit this magnificent and natural system in numbers without destroying the very reason for people to come here. Lawrence Halprin, The Sea Ranch-Diary of an Idea First, I believe that this nation should commit itself to achieving the goal, before this decade is Read more

  • Sea Ranch

    I stood on the bluff and looked down the coast to where we exchanges vows I could see the stairs we went down Mind you, these were no sissy stairs And also know, we had family members in their late 70’s, 80’s and maybe 90’s navigate them The last 7 feet practically have to be Read more

  • Mind Blowing Blessings

    For those of you in our village sending out prayers on our behalf, please know they are working My mind is currently reeling from the potential of 2 blessings that just arrived on our doorstep of life First, we are potentially within weeks of having live in help here Through the connectedness of Lisa and Read more

  • The Daily

    Matt sleeps a lot more these days I get a nice long private time in the morning since I get up early and he stays in bed several more hours Typically, I have to encourage him to leave the bed for breakfast around 10 ish During the day, his stamina is definitely less by a Read more

  • Abundance

    Last year about now, we flew from Virginia to the Bay Area to figure out our way forward In the mix, we celebrated our anniversary at Sea Ranch where we exchanged vows We house hunted, found the farm house I sit in now crafting this post We celebrated my birthday in Bolinas It was a Read more

  • Can’t Fix That

    Refilled my coffee cup this morning It was sweet, I drink my coffee black as night Matt put sugar in the coffee kraft, not his cup He doesn’t realize he did that, can’t “own” it What you don’t understand, I guess, you can’t own While he did put sugar in the coffee kraft (Sheba certainly Read more

  • new phone

    I am setting up a new phone for Matt Simplified, just basic functionality, designed for someone in his situation He isn’t into social media, never was He doesn’t surf the net any more, never really did much of that All the gizmos and gadgets on his current phone are too much So much, he can’t Read more

  • fervor

    I saw his smile yesterday Full force, reflecting happy Eyes bright Such a salve for my soul We were dancing towards the end of Elliot’s band set Everyone who was still there got up and danced by the pool Matt grabbed both of my hands and wanted to dance face to face We have always Read more

  • new cell

    Yesterday was a bit sobering Typically I am with Matt or Matt is with a sister or cousin All communication is either in person or thru those with him I went swimming with Lori Friday afternoon Wasn’t planning on being gone too long, turned on Star Trek to keep him company (thanks Brad!) We had Read more

  • What’s next

    We have been through a lot in the last year to adjust ourselves to the new reality of Uncle Lewy living with us I left a job I was really enjoying, found a new place to call home, packed up and drove across the country, settled into the new home, executed a plan to prepare Read more

  • tight spring

    Sometimes I feel like I am sitting on top of a tightly wound up spring Ready to “poing” up instantly if I hear or see Matt do something unusual Since he does unusual things a lot, I seem to sit on that tightly wound coil often these days This morning I have been thinking about Read more

  • We closed

    We closed We closed We closed That’s all I got to say today! Hooray!!! Read more

  • VA home update

    We hold our breath, close is scheduled for this Friday I count as one of our blessings my cousin Kacey is handling things on our side She is keeping her keen, sharp eye, her talents applied, to seeing this through for us, making sure that our interests are properly managed We only have control of Read more

  • Ernest

    In our darkest moments We don’t need solutions or advice What we yearn for is simple human connection A quiet presence, a gentle touch These small gestures are the anchors that hold us steady when life feels too much Please don’t try to fix me Don’t take my pain or push away my shadows Just Read more

  • waiting

    Thank you all for your comments and support of yesterdays post “On a dime” Sunday Matt continues to sleep alot He shied away from group activity….we still had friends passing through after the events of the weekend With Corny’s support, I was able to be with all the friends who flew in for this, was Read more

  • on a dime

    Things change here on a dime, quickly One day I am reporting Matt is doing ok The next, today, I am reporting he had a very bad day yesterday Matt loves to hike, so we continue to do that as often as we can Yesterday, we did one of our local favorites, Bartholomew It’s challenging Read more

  • messy

    Sometimes it’s really hard to be patient Last night we went to the grocery store I had to pick up a few things for the party, get something quick and easy for dinner He was difficult, disoriented in the store He was driving the cart (as we say), wandered off, stood in the check out Read more