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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  • A Loss, A Win

    We suffered a loss, Courtney moved out For 2 months we had help, it seemed a good thing But there are things outside of our control, things outside of our reach For personal reasons she decided to go back to Kansas with no clear plan to return It’s a big set back I now know Read more

  • Prayer Topics

    Just going to come right out and define it, asking for this kind of help we need in a clear way I sooooo appreciate many of you who want to help but geography is a hurdle So for my prayer warriors out there who love and care for us, this post is for you I Read more

  • Yesterday

    Yesterday was a day I wanted to end as quickly as possible It started with the holdover of some interpersonal dynamics for the day before A realization that the PTSD formed in my childhood was still there, lurking dormently in the dark recesses of my brain I faced this head on early in our marriage Read more

  • Shorter Days

    With the shortening of days, the coolness setting in The loss seems more poignant, more profound I have gone days on days not leaving the house When Matt is off with Courtney or family, I am heads down with work or some clean up project At night, when I am with him, his words are Read more

  • Gratefulness

    ‘Tis the season to express gratefulness And I am, even in the midst of sadness and things we just can’t change or control I am grateful for family, those with us here, now, those still on earth, but further away, those who have been part of our lives but who have gone on, ahead Those Read more

  • Update 11.26.25

    Many of you ask how Matt is doing In my reflections of my journey as caregiver, you may get a glimpse Here is more of a more direct medical update: We are going through various tests to see if we can determine why he had the partial loss of leg control on a few hikes Read more

  • The Power of a Break

    Maybe I should have known this, maybe I did, but the truth is more real now to me Everyone said “you need to give yourself a break”, get some regular help, take care of yourself Yes, I agree, the how, when, who, the what all needed to get sorted out Yesterday’s paddle drove the truth Read more

  • Paddling

    I finally got to go out paddling on the Napa River Sunday on an outrigger canoe Courtney was with Matt, so I took off from the house around 8:15 am It was a sea layer day, no wind, not warm but not cold Actually, it was perfect weather to be outside There were 14 people, Read more

  • Adventures

    Matt has been going on adventures Pt Reyes, Stinson, museum in Santa Rosa It’s cool, he and Courtney sometimes decide on the spur of the moment Sheba likes it too I am off doing whatever, or at home working These two are exploring Love it! She is new to the area, full of energy and Read more

  • Bubbles

    Bubbles: Another sign the universe giggles From the “Grateful AF” card set True that Brought to mind the best giggler out there, my Aunt Dolly Not only did she have a good giggle, she had a mischievous look to go with it Heart warming to receive that moment of feeling her again, here, near me, Read more

  • Big shout out to Ken!

    Talk about leaning in…… As I was making the decision to bring Courtney into our home, I called Corny and Barb to get their sage input They’d both stayed in the room, en-suite, upstairs that we would be leasing to her They suggested that a door for privacy at the top of the stairs would Read more

  • 2 Rights don’t make a left

    I just never know what I miss Seriously, seems like everything is up for grabs Matt and I took a road trip down to Capitola to visit friends Sunday Then we stayed the night with his sister Barb and hub Ken near by Sunday night We did quite a bit of walking around on Sunday Read more

  • Driftwood

    Driftwood is proof you can go through some shit and be even more beautiful for it My card for today from a adorable box Barb gave me for my birthday The box is called “Grateful AF” Each card has an item the author is grateful for, the other side of the card is an explanation Read more

  • My Birthday

    I thought it was going to be a bust My hopes were fairly simple, I just wanted to sail on my Hobie, we’d play off of China Camp Village Beach Picnic, hang, sail, kayak, hang, be Whoever could come, drop by, casual But a couple days before, I caught a nasty cold Energy levels plummeted, Read more

  • Kate

    We took Kate out yesterday Kate is Matt’s first cousin, the daughter to Matt’s father Walter’s twin brother Bob Kate lives nearby in an assisted care facility She and Matt share history growing up, the details of which I know little about It’s really a blessing we moved to Sonoma, I didn’t see the full Read more

  • A Shave

    Brad gave Matt an electric razor this summer This was such kind, thoughtful gift, as Matt was knicking himself up pretty bad with razors For the last few months he’d pick up the razor and walk around the house shaving randomly during the day After several months now he is showing a bunch of dry Read more

  • Words Matter

    It’s been a bit of a mixed ride the last few days While it’s been remarkably nice to have a smart, kind, funny, energetic additional sole in the house Matt has been in full form in the evenings He has this thing that kicks in in the late afternoon / early evening called “environmental dependence” Read more

  • Yesterday

    Yesterday didn’t go quite as planned, hoped It was supposed to be a 4 hour shift for Courtney so I could work Matt was uneasy for some reason So I adjusted my plans, we all went on a hike around the lake I feel it’s important to get back into some routine that includes him Read more

  • 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