Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey……

Matt, CJ and Sheba……

If you are here to understand, catch up or just be with us for a moment,

you’re in the right place


Recent moments as this journey continues…..

  • Ok, so I have to intersperce some humor in all this We have a peach pick’n dog! This is an AI generated image (thanks to Mary) of what we captured on video this week Sheba, being a lab, is very food oriented, stating the very obvious here Introduce a fruit laden tree and its inevitable… Read more

  • Slippery Slope

    This is what I worry about these days From all we have learned from those who have tread this path before us, there will be something that happens in the future that will send Matt down a slippery slope It happens often with diagnosis like his, a virus, an infection, a fall begins that downward… Read more

  • So What Happened?

    After yesterday’s post, you might be wondering if we went to the Bands at the Basin I struggled with this decision all morning About noon, I decided if we go, we are definitely going to try to watch from the Petaluma Yacht Club dock, if we can, if not we’d use chairs I’d put in… Read more

  • Play it Safe?

    Do we live or do we play it safe? Is there a middle ground somewhere? That’s the question I face alot Today, as I write this, Saturday, there is a “Bands on the Bay” event happening in the turning basin in Petaluma BYOFD, meaning: bring your own floatation device Think paddle boards, kayaks, rubber canoes,… Read more

  • Radio Recall

    I took a chance last night in my quest to get Matt out a bit more I bought tickets to a local performance called “Radio Recall” It is part of a summer series here in Sonoma, performed in a beautiful outdoor stage as the sun sets The show was a reliving of the “soundtrack of… Read more

  • Sista Visit

    Barb came up Tuesday to hang with Matt There is a lot going on in her life, yet she made the time to trek up here to “lay eyes” on her bro We both truly value and appreciate her making time for us Her drive is about 2 hours each way, it would have been… Read more

  • 200

    That’s a pretty big number, if you are counting cantaloups, antelopes, or telescopes Pretty big number in blog posts too, which is what today’s post it…..numero 200 Month 14 as well…..my first entry was June 2025 I think back at all that has changed in those 14 months We were settling into life in Sonoma… Read more

  • Poolside Visit

    Terri came by yesterday, brought a yummy sandwich for Matt We all sat by the pool and caught up, enjoyed our lunches At some point, Matt got up, he was a little bit anxious He made it a handful of steps and the next thing we new, he was down on the ground He didn’t… Read more

  • Cuz’n Time

    Matt had a great afternoon with his cousins Tuesday First, we dropped by Mag’s Yogurt in Larkspur to taste Elliott’s new Dubai Chocolate flavor My favorite there is always the vanilla with diced almonds But when he has pistachio, that’s my ultimate favorite with almonds added Matt had both kinds of chocolate, regular and Dubai,… Read more

  • Update 6.30.26

    I hope you had as much fun reading the SIPS BOR as I had creating it It genuinely brought amazing levity to my days as that was rolling out and allowed me many moments of rising above all that we deal with daily as we live with Uncle Lewy After the VA trip, Matt was… Read more

  • This shall be considered Amendment #7 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: The caregiver shall retain the right to remember that Uncle Lewy is a guest in this household. An unwelcome guest, to be sure. But a guest nonetheless. It is hereby recognized that: Household Standing While it is… Read more

  • This shall be considered Amendment #6 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: The caregiver shall retain the right to have dirty dishes located in any room, on any surface, and in any location where dirty dishes would not normally be expected to occur. Protected locations may include: The presence… Read more

  • This shall be considered Amendment #5 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: The caregiver has the right to laugh at situations that, by all reasonable standards, are not funny The caregiver may laugh when the remote control is found in the freezer, when furniture is rearranged for the third… Read more

  • This shall be considered Amendment #4 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: The spouse living with Lewy body dementia shall retain the right to erase a substantial portion of the day’s frustrations through the timely application of a sincere hug and an “I love you.” This amendment recognizes that:… Read more

  • This shall be considered Amendment #3 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: The household dog, Sheba, shall retain the inalienable right to patrol the perimeter of the yard and pursue squirrels along the fence line. This right shall remain protected provided that: Furthermore, it shall be recognized that: The… Read more

  • This shall be considered Amendment #2 to the Spousal Immunities and Protections for Sanity (SIPS) Bill of Rights: Amendment #2: The Right to a Good Night’s Sleep The caregiver has the right to expect that nighttime is, in fact, for sleeping. This amendment recognizes that: The caregiver shall be entitled to at least one uninterrupted… Read more

  • I am having a bit of fun this morning, giggling quietly in my quiet place After suffering a few inequities, including the complete disruption of a night of sleep Friday night And the unapproved, unauthorized use of MY coffee cup by you know who….. I felt the creation of a Bill of Rights was in… Read more

  • My Friend Chat

    Last night was rough, Matt was up and down, more so than usual I moved to my alternative bed, in the sunroom, and it wasn’t long before he found me, joined me there I need to probably provide a bit of insight into what all that looks like, is now When Matt tries to get… Read more

  • Sweet Treat

    In the midst of this journey, there are brief moments of delight The thing that can be hard is seeing them, savoring them Yesterday we went to one of our favorite places, VJB Winery in Kenwood It’s run by the Belemonte family, 3 generations are involved We often see the OG, what I call the… Read more

  • Our Angels

    We are so so lucky, we have a family of angels, in heaven and here with us on earth Matt woke up Monday morning and after Nora got here, got in a bit of a tangle with her He was resisting his usual medicine routine, was refusing to let Nora put his patch on, Nora… Read more