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.

111

This is my 111th post

My one hundred and eleventh post (I just had to spell it out)

When I started this in June, I had no idea if I was going to be able to keep it up

I know I was desperately trying to shift my headspace to a new place

We had just gotten back from Virginia, a super frustrating time of trying to get stuff out of the house so it could be sold

I needed to find a new mental place where I could manage my emotions, reactions, fears, annoyances better

I don’t often go back and read where I have been

Same is true for the now 872 pages in my journal

While this blog is 6 months old, my journal started several years ago

When we didn’t know he and Uncle Lewy had hooked up

He was just doing weird things, viciously breaking my heart with bizarre, unbelievable accusations

There is a lot of pain, confusion, in the early part of those 872 pages

I don’t know if I will ever be able to go back and read them, what I wrote, relive what I felt

What I do know is that journaling, blogging, has made a huge difference, huge

The quiet time in the morning that I sit and write, sit and think, engage the whole of my brain

This is grounding, profound, settling

I can’t imagine how I could have made it to where we are today, alive, without this

It has brought many of our villagers closer to us, I will get a text from time to time saying how the post touched someone, or if it’s been awhile, a text checking in

I share a link with friends who read and catch up, they tell me they are reading, crying, laughing, experiencing the roller coaster that this is

This is so very meaningful, helps so much, to know you are there, aware, with us, even though you might be hundreds, thousands of miles away

During this holiday season, we’ve sat on the sidelines alot

Haven’t been able to do the things we used to like to do

Many things are in the evenings, not his best time

Thank God football is good this year!

UVA was playing pretty good, they are going to the Gater Bowl (unfortunately not the national championship play offs)

Thanks Dook!

49ers are recovering from injuries and are working there way into the playoffs

So we definitely have been enjoying that

Just not the boat parade, or any parade, holiday concerts, holiday events

Large groups are hard for Matt, the pace of normal conversation is often too fast for him to really follow

Smaller group settings work best

I know he is really looking forward to some one on one time with Steve monday

I am hoping Brittany, Steve’s girlfriend, and I can slip away and do some wine tasting or whatever she wants to do so Steve and Matt can hang

That’s the kind of holiday magic we look forward to these days, and that is perfectly ok

So I will keep journaling, blogging, it’s my RX, it’s my Dramamine for this never ending roller coaster ride

Thanks for reading, for being here with us, it means a lot, more than I can choose words to express

Merry Christmas!!!

3 responses to “111”

  1. I totally get it – journaling/blogging can be a lifeline when everything feels out of control. I did the same during our adoption journey, and I’m not exaggerating when I say it saved me. It gave me somewhere to put the fear, the hope, the exhaustion, all of it – without having to carry it alone.

    What you wrote about the quiet morning time, engaging your whole brain, really landed. That grounding space matters so much, especially when life narrows and you’re forced to redefine what “good days” look like. The way you’ve reframed holiday magic – smaller, quieter, more intentional – is incredibly powerful.

    Your words clearly matter to so many people. Even when you’re writing to survive, you’re also giving others language for things they don’t know how to say yet. That’s a gift.

    Sending you, Matt, and your whole village a lot of love this season. Merry Christmas 🤍

    Liked by 1 person

  2. I totally get it – journaling/blogging can be a lifeline when everything feels out of control. I did the same during our adoption journey, and I’m not exaggerating when I say it saved me. It gave me somewhere to put the fear, the hope, the exhaustion, all of it – without having to carry it alone.

    What you wrote about the quiet morning time, engaging your whole brain, really landed. That grounding space matters so much, especially when life narrows and you’re forced to redefine what “good days” look like. The way you’ve reframed holiday magic – smaller, quieter, more intentional – is incredibly powerful.

    Your words clearly matter to so many people. Even when you’re writing to survive, you’re also giving others language for things they don’t know how to say yet. That’s a gift.

    Sending you, Matt, and your whole village a lot of love this season. Merry Christmas 🤍

    Liked by 1 person

  3. wondrous268336d70c Avatar
    wondrous268336d70c

    Merry Christmas, beloved! Thank you for opening a window into your heart so that we can join you on this journey. Your experience is also helping those well beyond your own sphere. Love you both so much!

    Liked by 1 person

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