Uncle Lewy

Living out loud with Lewy Body Dementia

Daily Life

  • Update 3.7.26

    Things are generally good here, now Some of Matt’s evening behaviors that were so stressful (for me) have calmed down quite a bit, I think it has to do with the shift in med timing, consistency of med taking He still grabs stuff, moves it to places I later find, thinks the trash can is… Read more

  • Update 02.11.26

    Things seem to be in a relatively good place right now Our in home therapy’s will discharge fully today We have had the benefit of 8 weeks of help from physical and occupational therapists, nurses, social workers Soon we will begin to experiment with a new program Medicare launched in 2024 called GUIDE which sole… Read more

  • Visits

    Ohhhhh I am so excited the calendar is getting visits on it! My brother is coming a few weeks Not long after that I am going to play with my girlfriends in Flagstaff and Barb will be hanging with Matt Not so long after that Marni and Anna fly in for a wedding and we… Read more

  • 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

  • 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

  • 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