Uncle Lewy

Living out loud with Lewy Body Dementia

Memory Care Visit

Tuesday I took Matt to see the memory care community that has risen to the top of my list

I have seen at least 10 different places and there are so many more, thank God I have the help of Eloise and Cara

I have a spreadsheet, a list of things that are important in my mind, ranking each aspect for each visited community so I can get a summary score

This really helps, and it did confirm the one in my brain that I thought rose to the top as the top contender

Ample wandering space, types of fellow community members already there, geographical location, ease of outdoor space access, availability of a single room, level of staffing, financial….there is a lot to consider

I can’t help but think there must be a blind spot to my analysis……

It was easy enough to compel him to go on a road trip to Petaluma, to see the top contender: I told him we’d have lunch at the Lagunitas Brewery, one of his favorite beer brands

The brewery is a bit more than a mile north of this community….important info for future visits if he were to move there

We walked in and immediately Matt found the cloach containing the lemon bars, he helped himself to a few, leaving a nice gooey yellow blob on the floor for the cleaning crew to find later

As we sat in the waiting room, we saw several family members sign in to visit their person

All very normal looking folks, kind smiles on their faces when they looked our way

We were escorted into a conference room by Suzanne, the sales director

The next half hour or so Matt was interviewed by an RN to understand his needs a bit more

It’s so much guesswork…..Matt still says he can do most everything….but that’s not the case really—I quietly outside of sight range of Matt shake my head no

I have been prone to say his ADLs are non-binary: it’s not that he can or can’t, it just depends, so it’s sometimes

The nice RN, male, lead us on a tour

I have been there 2 times before, so this was really a tour for Matt

One aspect I like about this community is that it’s currently 40% male

Many communities are more heavily female

The men are ambulatory like Matt, one was wandering around looking for his car, worried about this crises or that crises

They are converting a library room now to a “man cave” with a TV for watching football games and the like

The footprint is like a big square donut, which is good for walking and wandering which Matt is still very prone to do

I dropped back for a few minutes and let the RN guide Matt without me near

When I caught up with them, they were almost 3/4th around the donut, getting close to where we started

Matt grabbed my arm gently and said “Get me out of here. It’s bringing back bad memories.”

So we politely wrapped up our tour and conversation and took our leave, next stop was the brewery

I haven’t posted this for a few days because I needed to sit on it, wait to see if anything further manifested from Matt’s experience, put everything in perspective

I had to think this through now that we had taken this step

His reaction, honestly, was substantially better than my worst fear, even though I felt sorely disappointed when it happened

He has had severe delusions of being “taken away” to an institution in the early days of this disease

I didn’t feel like he deluded at all, he had a normal and understandable reaction to being introduced to a new place, a type of place he has several years of experiential memories of taking care of his father

No doubt he has a level of understanding about this, what this visit was, so the fact he quietly pulled on me to exit politely is actually a good thing, I guess

Wednesday evening, as I continued to ponder this, I engaged in a conversation with ChatGPT about it all

Specifically, I asked Chat to summarize what the most likely next changes in Matt’s abilities would be as he progresses in this disease

This turned into a valuable conversation of how the house we are currently in will begin to present some real logistical challenges as he looses certain abilities, the least of which is ease of walking unassisted

I hadn’t really given this much thought, direct thought, intense thought, so it was a good exercise

I have modified our living conditions to fit his situation as he is now…..but hadn’t thought about bigger changes we should reasonably expect going forward

This, plus we only have a lease till March of next year—so there is a move one way or the other looming on the horizon— certainly underscores the path I have us on has tons of merit

Nora, his main caregiver, agrees it’s time to consider this move for him

He still has the ability to freely move, acclimate in his own way before he begins to loose more capabilities

And there is really no way to know exactly what capabilities will leave him when, it’s only predictable that he is likely to loose them more and more as time goes on

What’s next you ask? I am going to be going on a trip to see my mom soon, see friends and family

While I am gone, his sisters will be spending a lot of time with him

I hope that they, with their own experiences and own unique relationships, can engage him in some chats about all this, I have asked for their input, engagement on this

While this all seems to be focused on what he needs, what’s best for him, there is another piece of this: what do I need?

In my support group we just learned one of our members, a spousal caregiver who is probably my age and likely even healthier than me, had a heart attack

Another who is older, when helping her husband get into the house from their garage, fell on their cement floor on her back, him on top of her, off a step or 2 up

She has been 7 weeks in severe pain recovering— because of whuch she had to move him immediately to a memory care community

Can you imagine being in severe pain yourself and going thru this kind of move for your compromised spouse? OMG… nightmare

It gave me pause to think what would happen if either scenario happens to us……I don’t want to go there….but suffice it to say, I do not think Matt would be capable of calling 911

So there is my health and safety to consider too…….

No big jolting decisions here, just a ton to think about, important things to think about

With the research well underway, it’s certainly easier than if we were in a full blown crises with no research done

But it’s still very hard to know, to be sure, the decisions are the right ones to be making, the timing right….its all so hard

This story continues to continue…..

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One response to “Memory Care Visit”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

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