Uncle Lewy

Living out loud with Lewy Body Dementia

Complexity

They say that there are 3 main, or top, reasons to consider moving a loved one who has dementia to memory care:

  • Wandering
  • Incontenience
  • Caregiver stress

This is a generic dementia list

What I am discovering is that LBD and “generic” dementia differ in many significant ways

The first item is rarely an issue with LBD, wandering

What is missing in this list is “environment complexity”

I’ve watched, you might call it studied, Matt over the last few days with some intention

What is he drawn to, what is he doing, what is ok, what is not ok?

Things that are not ok:

  • Playing with knives
  • Messing with Sheba or his medication weekly boxes
  • Responding to delusions in a way that puts me in danger

Ok, I expect alarms bells went off in your head just now: how is he making the environment dangerous for me?

Its just a one time thing, so far, but here is what I was specifically referring to:

One night recently, in the middle of the dark night, I was sleeping in the sunroom, him in the master bed room

He got up, wandered

I either heard him or needed to get up myself at some point so I got up and walked into the living room, towards the kitchen

As I stepped, I contacted a small glass prep dish on the floor

It didn’t break, but what the heck was it doing on the floor in the middle of the natural house traffic pattern?

I picked it up, then a few steps later my foot made contact with a wine glass, a delicate stemmed one (again, nothing broke)

Then a few feet later, another glass prep dish

I recall him being available for me to ask “what the heck” to at some point

His response was something having to do with safety, meaning the glass items were put in the path of some sort of delusion he was having, he created hazards to keep him safe from a boogey man of some sort

Like land mines, booby traps for his imagined monster

I now keep shoes by the bed and put them on if I get up in the middle of the night just in case this delusion and solution reoccur

But what will it be next time? How do I guage a unknown like “will there be a next time” and “what will happen next time” and “will I be so lucky next time”?

So the list of reasons for memory care above doesn’t include what I am beginning to believe is the biggest reason we might move him to a memory care facility, this isn’t science, this is just me thinking out loud

Complexity of the environment, that is what might warrant a move for him, IMHO

What I am witnessing is him engaging with an environment that may well be simply too complex

Too many things to process what to do with, or not

Too much noise. What is that noise? What does it mean?

Too many words being spoken all at once, too fast to process

That last bit, the caregiver indicated yesterday that when the house cleaners were here, when they were very efficiently cleaning the entire house (they do a great job); during that time he was anxious, wandering

Maybe he was processing what is going on: Who are these people? What are they doing? Why are they here? What are they saying (mostly spainish)?

I doubt it was a one time process, solution determined, move on thing

It was likely a loop that played over and over until they left

This home we have, this house, this property, may well be simply too complex for him to find comfort in it other than in bed

That may well be enough to justify the move…………or so I am pondering

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One response to “Complexity”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    I honestly think you are there, CJ, after reading the past several weeks of your blog.

    I had the most lovely, gentle dementia patient, who in his life had been a pediatrician. I never would have thought he would hurt me. One day I was helping him toilet himself and he had a delusion that I was a monster. He hit me so hard I ended up on the floor between the toilet and the wall. Because I was in a lock down unit, I had immediate help in the form of a panic button.

    Please, don’t wait too long. The transition from cognizance to delusion can be sudden and unexpected.

    I am not trying to scare you. I just know that most caregivers wait until a crisis before they place, and it’s usually anger or frustration that motivates them. It’s so much easier and kinder for the patient if the transition happens without trauma as the motivation.

    Like

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