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.

Wandering and agitation

Restlessness and agitation: LBD can cause a general state of restlessness, leading individuals to fidget, pace, or make repetitive movements. This can be triggered by anxiety, confusion, or even just a need to move around.

Cognitive impairment problems with thinking, memory and decision making can lead to confusion and disorientation. This manifests as pacing as individuals search for something familiar or try to make sense of their surroundings.

Sometimes, often, in the evening, Matt will not be able to sit still

He will walk from here to there, take off a single shoe, rearrange the furniture, etc

I try to distract him with TV, Star Trek is good for that (thanks Brad!!)

But it doesn’t often work as well or as quickly as I might want

He is on edge, he causes me to be on edge

I act like I am not watching, letting him have his freedom

But I am on high alert, my ears are dialed into the sounds, ready to jump up if something sounds like it could lead to danger

Like the clicks of the gas ignition on the stove, or the sound of the oven kicking on

Him banging the top of a beer can with a knife because he can’t figure out how to work the pull tab

Of course that leads to me immediately jumping up to stop that activity

In the morning I find strange things in odd places, my task of sorting out the mysteries begins

This morning there are 3 beer bottles, each half full, on a window sill

He explains he didn’t do that, other people who live here did that

We do now have anti-anxiety meds to take as needed, but that doesn’t always work

My initial thought was that since he has lost so much control over his world, driving, ability to figure things out, the moving of things was a way of him exerting control over his environment

The second piece of the above quote supports that

Seeing the initial clinical explanation here, connecting anxiety to this behavior may help explain it too

I have been reluctant to give him anti anxiety meds because I can’t say I really know how to identify anxiety in myself, so much someone else

There is so much to always learn, figure out, and then something new happens…..and the cycle starts again

Coming back to these statements, as above, seems grounding. The glove fits better after some OTJ.

3 responses to “Wandering and agitation”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    OTJ?

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    1. OTJ = on the job training…nothing beats hands on experience for being able to apply clinical theory to reality

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      1. mentalitysensationallyfc14c86ab9 Avatar
        mentalitysensationallyfc14c86ab9

        Ah, NOW I get it! 👍

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