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.

  • Pooh Days

    Today was a difficult day, says Pooh Do you want to talk about it? Asked Piglet No, I don’t think so That’s ok, says Piglet, I know what difficult days are like. I quite often don’t feel like talking about it on my difficult days either But goodness, Piglet continues, difficult days are so much Read more

  • Merry Christmas

    Its Christmas morning, quiet morning here, fresh air from the rain last night The place we stayed the last 2 nights is nestled in the redwoods, in Santa Cruz mountains Its, in a word, beautiful here, I love being face to face with nature, the elements (as long as those elements aren’t too hot or Read more

  • 111

    This is my 111th post My one hundred and eleventh post (I just had to spell it out) When I started this in June, I had no idea if I was going to be able to keep it up I know I was desperately trying to shift my headspace to a new place We had Read more

  • Heart rate

    We had quite the week this past week Once our doc approved us for in home therapies, we have seen a physical therapist, occupational therapist, speech therapist and social worker It’s been overwhelming for Matt Many of them were assessments, so that a treatment plan could be worked up We could have started the actual Read more

  • cookies

    It’s never been easy to convince Matt to go shopping with me You know, mill about, looky here, looky there, girl fun shopping I do, however, have a great memory of him going with me to Barcelino in Sausalito He wanted to buy me something special So we had a bit of a little fashion Read more

  • 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

  • ‘Splain Dat!

    I used to love it when Desi used to come home and find Lucy had been up to something Her eyes were always big, hoping she wouldn’t get caught, his hands on his hips, knowing she’d been up to something “Explain” the word, was closer to “eh-splain”” when he said it In other words, ‘splain Read more

  • 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

  • Update 11.02.25

    I think I am going to try to do a symptom/ health update about Matt at least once a month now Many folks ask, are genuinely interested, we greatly appreciate that We go to see the neurologist later this month, a return visit, we think highly of him Matt has gotten skin check, teeth checked, Read more