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Matt’s environmental dependence activities in the evening seem to have calmed down a bit I wonder if me letting him clean the dinner dishes helps I say “clean”, what I really probably truly mean is letting him go through the “act” of cleaning, being helpful He will wash them in the sink, sort of He… Read more
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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
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We have had a visitor he last few days Sheba has had a few slumber party nights Coco, our next door neighbors standard poodle, has been with us It was supposed to be a single over night stay…..but life happens A trip to the hospital happened for our neighbors So Coco and Sheba have been… Read more
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No pun intended, but certainly one noticed, ever since I got back from Virginia, where the deep freeze happened, I feel like I have taken a chill pill It really came into focus this morning Matt was knocking about the kitchen, banging, clanging Typically I would spring up to supervise But I realized this morning… Read more
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Matt’s birthday party was a success Success being measured in his positive anticipation, number of smiles from him, all the love that surrounded him Thank you to everyone for being there We came home and he crawled right in bed, stayed there most of Sunday too I admit, I was equally exhausted Having the crab… Read more
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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
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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
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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
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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
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*****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
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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
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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
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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
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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
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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
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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
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.
Uncle Lewy 