Uncle Lewy

Living out loud with Lewy Body Dementia

January 2026

  • Back from the east

    Arrived back from a week east Visited with Mom, got a break from Sully I had some great plans, all started well, till Snowmaggetten forecasts ruled the conversations….canceled almost everything Wednesday was fun, I got to see family briefly in Richmond, peeps from the office, join into the 757 Angels 10th year anniversary party All… Read more

  • Arts and craft project

    So this morning after breakfast and meds Matt seemed to embark on an arts and craft project First, he gathered 3 clean cloth napkins, to which he found and added a dirty sock, a pair of underwear…most likely dirty He wandered around looking, looking….. Then he found 3 old bread bags in the kitchen garbage… Read more

  • The only time I ever heard about social workers before was on shows like CSI They were always the ones taking children from parents Mind you, usually the parents were in a big pickle, one thing or another, but still, my image of the profession was generally over worked cranky old ladies So when several… Read more

  • Sully walks

    Its 6:11 am, my quiet time I’m with my thoughts, my journal, my first cup of coffee, my herbal tea I am just getting snuggled into my corner, blanket in my lap, reading glasses on Deciding which insence I want for my morning Sully walks out, sees me from the kitchen Yesterday’s mock turtle neck… Read more

  • Crab

    Matt loves crab as much, we’ll almost as much, as I do I saw it at Sonoma Market, asked the butcher “Is it local?” “Yes” “2 please!” What a fun surprise to bring home to Matt I think At dinner time I out the crab out, melted butter, lemon, Caesar salad I ask “do you… Read more

  • New Phase

    So a new phase begins A phase that is trying to honor the new Matt, trying to meet him where he is I know I don’t have all the answers for this new phase, it’s definitely way outside of my wheelhouse All I can do is experiment, try things, take in advice of those who… Read more

  • Mind set change

    *****sadness warning issued on this post******* I am sadly realizing, digesting, the mindset change I need to make It seems to me in this moment it is so key to getting to a better place for both of us This won’t be easy for me to write, it won’t be easy for some to read… Read more

  • He fell out of bed

    It’s something I could see coming We talked to the occupational therapist about being worried about that We lowered the bed by removing the box springs The occupational therapist worked with him on techniques to get in and out of bed He tends to sleep, for what reason I have no idea, on the edge… Read more

  • Changes

    Things seem to be changing, shifting a bit Not long ago, when we visited places or classes which were focused on helping either Parkinson related issues or dementia related issues, group things like classes, etc, all Matt saw were a bunch of old people who he couldn’t identify with Not long ago he felt he… Read more

  • Sully

    No one on the medical team helps with this piece What do you do when a 67 year old man affected by Uncle Lewy acts like a child? Do you get to treat them like one? If not…..then what? This morning I embarked on the daunting post holiday Sunday am refrigerator clean up Not just… Read more

  • Help is on the way….

    This was a doozie of a week You already know of the head spinning drama of the last post or 2 I my effort to execute on my now defined problem statement, I planned to meet up with Mark and his colleague Kirsten outside of the house so we could talk freely, without concerns Matt… Read more

  • Power of a phone call

    I learned a huge huge lesson yesterday A phone call at the right moment can be so powerful, so transformative I am, I admit, a texter, it’s quick, efficient, respectfully lets the other party choose the time they want to respond But a phone call, a moment of focus between 2 humans, sooo much more… Read more

  • ADL’s

    Activities of daily living (ADL’s) Instrumental activities of daily living (IADL’s) Conceptually, I knew about ADL’s, but if you put a gun to my head, I may not have gotten them all right before today I didn’t know IADL’s were defined as such a thing…..but they are Instrumental Activities of Daily Living At this moment… Read more

  • Accountability

    Accountability is important in any relationship, IMHO When you dial it in, it can be a beautiful thing, a thing easily taken for granted Add Uncle Lewy into the equation and it gets confusing Our situation, our marriage, has always been the merger of 2 independent people So in the early years we had to… Read more

  • 68.8

    That’s how many CPE hours I needed to log, take, before New Years I had this on my to do list all fall November I took 8 hours, so when I looked at it, in crises mode, second week of December, I still needed 60 hours Being a numbers person, I calculated how many hours… Read more