Uncle Lewy

Living out loud with Lewy Body Dementia

And Now….

So last weekend was rough, no other way to describe it

As the week evolved, things got better

Cornelia’s intuition kicked in and she drove down from Bend early last week to lay eyes on Matt, to see how he was doing herself

I appreciate her intuition, I appreciate all the sage input she shares, its always from her golden heart, from a place of love

She is a bit of a Matt “whisperer”, she is able to get him to talk about things in a way I can’t seem to

I found out a few things, which were very interesting!

Cameras: he said to Corny “do you know there are cameras all over the house?” to which she said yes

She asked what he thought they were there for, he said “so CJ can keep an eye on me”

Amazingly he seemed ok with that…..so I was quite pleased

Blog: he said to Corny “do you know about the blog”, she said yes, she reads it

He asked “what is it about” she told him it was about my experience in this journey and a little bit about how he’s doing

Again, he didn’t seem upset at all about it, seemed to take it in stride

Moving to a facility: she asked him about how he felt about moving to a facility that could take care of him

His response was: “I’ll do what I have to do”

No push back, no delusion trigger

These 3 things were amazing things to learn, a true piece of evidence that it definitely takes a village, this is not a good journey to be on alone as a couple

I am taking steps to try to find out what the available options are for a place that would be better for Matt

Redwoods informed me just a couple weeks ago that they don’t have any openings coming up, however, the consultant I am working with on Marin locations used to work there so I plan to ask her to call them and dig deeper

Is it that there is a wait list 5-6 deep from independent living residents that will have first priority if something opens up? Are we top of the outsiders list as I have been told? What are the real odds that we might ultimately be able to move Matt into the Redwoods in the next 6 months to a year?

I know I expressed concerns that the Redwoods might not be the best place for him, however, the consultant thought about it and believed it might well be a decent fit, so the Redwoods remains truly top of the list

But that doesn’t mean anything if there is no availablity when we need it

Corny and I went to visit a newly built community in Healdsburg, Enso Village

I have to say I was blown away! Its a beautiful community, complete independent living to assisted living to memory care

A joint venture with the SF Zen Center and a Quaker value based non profit, it has so many features that make it very attractive

The memory care section is beautiful, very thoughfully designed, the rooms very comfortable with large windows that look out to beautiful manicured spaces

The memory care section has a beautiful outdoor section that seems substantial in size so that the residents can be outside but yet still in the care area

Monday I tour a few places in Marin……I’m sure the next few weeks will be filled with tours of places the consultants want us to look at

Meanwhile, I’ve found the energy to start simplifying the house here, moving a few things to safe keeping, continuing to evolve our home here to accomodate Matt’s current tendencies to physically move and touch things constanly when he is not otherwise lying in one bed or the other

They say this is a roller coaster ride, and they are not wrong

While I have hope that maybe there is a better environment for him on the horizon, I also realize in the same thought that moving him to a place would be just the first of many dominos to fall which will substantially affect my life

Now I have him with me, even though he’s not the full picture of the man I married, I do have him with me

If he moves, I will be living alone……..that is a big domino

Am I truly ready for that? I don’t know, I need to think about that

If he moves, continuing to live in this farmhouse won’t make a ton of sense, so where will I move to next? What do I need in a next place, how long will I be in a next place?

Its not even been a year since I did the last bonzi trip back to Virginia to clear out the last things from our house before the sale closed

Do I have the energy to manage a big move and at the same time process yet another level of loss which comes with this journey?

So many other things to think about, I have a renewed appreciation why Matt finds the bed such a wonderful place of refuse…………..I want to hide in it too!

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