Uncle Lewy

Living out loud with Lewy Body Dementia

Update 3.22.26

Its been 10+ days since I landed a post here, all is pretty good, just a lot going on in Matt’s Village

It was when I was packing for my trip to Charlotte area that I found the wandering abalone shell

Matt moved it from the top of the dresser to the drawer, immediately under where I kept it

The problem was I never opened that drawer all the way……so I never saw it

It was because I was looking for a travel pouch for my items that I opened it wide and there it was

One of those unexplainable things that he does, hide and seek, except it always isn’t as fun as it was when I was 4 years old

Little victories however manufactured are appreciated!

Barb came to stay with Matt while I took my trip east to be with friends, watch ACC basketball in ACC territory

That said…..I guess Northern California is ACC territory these days with Berkeley and Stanford in it……I digress

Corny was here also, staying with Nelia, so between her and Barb, Matt was busy with impromptu family dinners and things

It certainly makes me relax deeper into my break knowing he is in such great hands, in the larger embrace of the family

That said, I am always a bit jealous, my FOMO gets engaged (fear of missing out)

But being with my besties was great; we didn’t do much

I’d share a picture of all 3 of us but I don’t think we took one

Most of the weekend was just hanging out, being together

Supporting each other with whatever we were dealing with in our lives

And there is a lot going on in each life

Our weekly routine at home includes 2 days where Loata, a lovely caregiver originally from Fiji, comes to be with Matt

Now, we have added, as of Friday, Jenna to our home

Jenna replaces the role that Courtney had last year

There is always a time of adjustment as things begin, so we’ll be sorting out schedules and all that in the next days and weeks

She is here as much to give me extra times to get away but also to help with the household management, cleaning, all that

My long time friend from Sausalito, Debbie is living near by for the next few months and she’s been helping a lot

Either swinging by with her cutie pie Dolly Parton to visit or drop off for a dog sit, or coming to hang out with us, or hang out with Matt so I can go off to paddle or do something

Excitement continues when the neighbors get involved with their dog Coca

Jenna has a small Dorkie mix named Cocoa and the neighbors have a standard poodle named Coco Channel

So we have little Cocoa and big Coco who met yesterday to make sure they’d get along

Tonight big Coco stays over….hence the pre game warm up yesterday

With all this help dialed in, with the weather warming up, I’m getting out to paddle with the outrigger group in Napa more consistently now

We paddle Monday and Wednesday evenings and Saturday mornings

Each boat has 6 people and each seat has a role to play

Here is a pic of the boats as they rest between practices; there are 4 hulls here with their outrigger and ama (arm that holds the outrigger to the hull)

We paddle on the Napa River which, IMHO, is a hidden gem, under appreciated, local asset

While I did a bit of this when we lived in Smithfield, this group in Napa is certainly bigger, carries more authentic feeling tradition

The thing that is so amazing, after consideration of the water time and exercise which is so important to me, the spirit of the ‘Ohana team is very clearly embraced

‘Ohana in Hawaiian transcends the simple definition of “family”; it represents interconnectedness, a sense of belonging, and an unwavering commitment to mutual support, love, and responsibility

To that end, the name of the team is ‘Ohana and one tenant they embrace is everyone knowing everyone else’s name, in a real sense, all this begins there

So when I started dropping in, hands reached out eagerly to say, Hi, my name is xxx, what’s your name? Over and over

The next time it was “hi CJ”, “hey CJ”, “Good to see you CJ”

These little things in the midst of whatever life we have going on are so so so amazingly wonderful

So my challenge is of course returning this wonderful favor and learning, remembering, greeting everyone in the group by name

Did I tell you sometimes there are more than 20 people paddling on a given day? And not always the same 20 as the practice before? So this is a cognitive exercise to be sure!

I continue to learn the ‘Ohana spirit, their customs, rituals and yesterday, got a full lesson along with 2 other beautiful novice women on boat techniques from 2 of the team coaches

Both Tom and Sean are from Hawaii, so the instructions feel very authentic, very with the spirit of ‘Ohana

Sheba has responded well to her new regime of meds and supplements the vet prescribed

She has been pain free for the last 2 weeks; this week we’ll call the vet to see if they think she is ready to join us for a hike, which I have tentatively scheduled for Tuesday around the lakes

Matt is upset with me because I have taken over feeding Sheba from him

I honestly don’t know how to handle this; evidence is clear that he doesn’t remember how to consistently feed her properly without supervision

I’d have to grow a few more angel wings and feathers to find the extra gallon of patience to enable him to feed her and supervise that

Its more complex now that she has meds that can’t be accidentally mis-dosed

There are so many ways in which he has tried and made huge mistakes in feeding her; some of which I have shared, some of which would not be good for her at all

It makes me sad I have to be heavy handed, not let him feed her as it upsets him that I don’t trust him to feed her

All this to say, I think we, Matt, Sheba and I seem to in a good place, certainly we have challenges, but in a general good place given the cards we have been dealt

Most moments that get rough eventually end up in a hug, a long hug and an “I love you”

Random things happen on the daily, you seriously can’t even try to anticipate around here…..like the Roku remote went AWOL last night……so I am under pressure to resolve that one way or the other before UVA plays Tennessee at 3:10 PST today……

3 responses to “Update 3.22.26”

  1. You can download the Roku app on your phone. It has a remote control in it that you can use for everything except for the volume.

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    1. Thanks. Found that…….the other thing it can’t do is turn the TV off, which was annoying in the middle of the night… promos kept spontaneously coming on, at solid volume! Found remote in his pocket after he had been walking around all day with it in there! Baggy shorts ….

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  2. Really great post CJ, hearing about your paddling club and their Ohana hearts and priorities and how it feels to join them, Sheba’s responding to meds (hurray!), your trip, evolving help network and working through lost and found episodes. You’re taking all this on with real grace, honeybun.

    It’s funny in a way the suddenly missing things…that’s been happening now with Dad, where one day it’s his electric toothbrush evaporated from the tiny apartment and another day I can’t find his 30-year-old coveted Maui Jim sunglasses in their usual drawer or aaaaanywhere…

    You are finding that patience you seek through the surrealness of it all, I see those wings Ceej XXOOO

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