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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  • VA home update

    We hold our breath, close is scheduled for this Friday I count as one of our blessings my cousin Kacey is handling things on our side She is keeping her keen, sharp eye, her talents applied, to seeing this through for us, making sure that our interests are properly managed We only have control of… Read more

  • Ernest

    In our darkest moments We don’t need solutions or advice What we yearn for is simple human connection A quiet presence, a gentle touch These small gestures are the anchors that hold us steady when life feels too much Please don’t try to fix me Don’t take my pain or push away my shadows Just… Read more

  • waiting

    Thank you all for your comments and support of yesterdays post “On a dime” Sunday Matt continues to sleep alot He shied away from group activity….we still had friends passing through after the events of the weekend With Corny’s support, I was able to be with all the friends who flew in for this, was… Read more

  • on a dime

    Things change here on a dime, quickly One day I am reporting Matt is doing ok The next, today, I am reporting he had a very bad day yesterday Matt loves to hike, so we continue to do that as often as we can Yesterday, we did one of our local favorites, Bartholomew It’s challenging… Read more

  • messy

    Sometimes it’s really hard to be patient Last night we went to the grocery store I had to pick up a few things for the party, get something quick and easy for dinner He was difficult, disoriented in the store He was driving the cart (as we say), wandered off, stood in the check out… Read more

  • update

    Matt’s doing pretty good right now Things seem to be somewhat stable He boxed 2 times this week, trying to get a routine down He had a great time with Barb last week while I was in VA The next few days Corny will be with us, with him, as I pay attention to the… Read more

  • Saying goodbye

    Mr. & Mrs. Skinner, If you are opening this card that means the keys to 114 are in your hands. We seriously hope and pray this will be an amazing home for you as it was for us. The long room in the heart of the house often hosted a table of 40+ family and… Read more

  • Angel Cecil

    I remember when I bot a semety two Chevy from Bruce Wayne’s granddaddy Cecil said that after an hour or so of picking through the garage Wait a minute, I said, if you bought a 72 Chevy from Bruce Wayne’s granddaddy, the you bought it from my granddaddy’s twin brother Ramos! (yes, in 1903, these… Read more

  • heart fissure

    My heart broke a little recently Matt asked “I don’t understand why I couldn’t go” I am in Virginia on a sprint of a trip, 48 hours, to get the final bits and pieces of our “stuff” out of the house Its not, in the scheme of things, a lot, but some of it has… Read more

  • Posting pace

    I am new to this writing thing It won’t be long till I post my 60th blog Who would have known? Not me! How this happens has definitely evolved, is evolving I struggle with that Shouldn’t I select one way and stick to it? I am so used to structure, accounting has structure I’m venturing… Read more

  • Tahoe

    A weekend in Tahoe, a special weekend We are so grateful for the time spent with family. Sisters, brothers, cousins The gift of family is intensely meaningful to both of us It always has been, even more so now Matt was surrounded by a dozen people who know and love him deeply, care immensely for… Read more

  • Language of love

    There is a poem, hand written, faded ink, in a frame: A Poem to Matthew He’s just a guy who can’t say no No matter what you ask Will you do this? can you do that? To him its not a task He does it with good humor He doe it with aplomb He always… Read more

  • Socialization

    The other thing that came out of the appointment with his new doc was the true benefit of exercise and socialization Matt and I have sorted out a good list of exercise that we both enjoy here Monday, Wednesday, and Friday he boxes with Rock Steady (most of the time) Most in the Rock Steady… Read more

  • Evening behaviors

    Early in the blogs I was screaming out about his evening behaviors We thought it was anxiety and/or sundowners The behaviors keep me on edge, raise my stress levels, cause us to have unpleasent exchanges So our prior doc thought it was Sundowner’s syndrome and prescribed an anti-anxiety med which he felt would not interfere… Read more

  • new doc

    We met our new California Neurologist this week Change can be good I learned more, got more informative answers then any other doc appointment I came in prepared, I had 4 areas of questions Clearly, part of the visit needed to focus on establishing a new relationship We met with him for a bit over… Read more

  • Word salad

    A lot of what Matt says now is nonsense As hard as it is to work through the mumbles Lean in to be closer to hear better Overcome my own hearing challenges (thanks Dad!) When I do hear his combo of words, they don’t often make sense Yesterday at breakfast, he was saying something about… Read more

  • collateral damage, update

    I submitted my truth to the Virginia Board of Accountancy in July I fell 30+ hours short of my education requirements due to the fact our lives were invaded by Uncle Lewy The VA Board of Accountancy had to determine what kind of disciplinary action they would take due to my self reported short fall… Read more

  • house, update

    We are under contract again It was a miracle, but something good did come out of the open house Saturday The current prospective buyers were the first ones to see it back in May Close date is mid-September, so fairly quick, no contingencies They used the home inspection from hell I am not holding my… Read more

  • Roller coaster

    This weekend was a bit of a roller coaster ride Some highs, some lows, a few unexpected turns Saturday began with a punch list review of fix it things for our California house Yes we are renting….so I am grateful this isn’t my punch list to manage, but it was still exhausting Then, our Virginia… Read more

  • prayers for the house

    It’s been quite the journey, trying to sell the Virginia house We still need to find a buyer A family to call the house a home Today is another open house, please pray obstacles, traffic, weather don’t keep that special family away Maybe they have a grandson who will be fascinated by the sand fiddlers… Read more