What does love have to do with it?

I found this poem about love being our salvation (and not) from April. It’s true. Love can’t stop the heartache, but we need it to just “keep on keepin’ on.”

Today, Burt had no problem letting me go. He called to check when and where we would meet later. Very agreeable.

Last night, my early to bed program was hoist on its own petard as it were. My fault.

I started him writing a weekend schedule late in our evening.

As with all things Burt, it took way longer than the few minutes it could have. There was checking and rewriting. I was sad to see that his scribbles made no sense.

Finally, I called “time” and was able to get us resituated in the bedroom. Night meds and the hope of sleep were before us, I hoped.

Burt was wound up.

He took the bedtime pills but just kept talking.

I lay down earlier than I had planned in the expectation that we would soon be asleep.

I don’t know where he gets all that juiced energy!

A problem in the making?

It’s very likely that this hat rack arrangement will lose its utility soon. It is a convenience, but for Burt, it has become an issue.

I knew it might be. He has begun humanizing animation on the TV and identifying with cars on the traffic cam station (FIOS 28). The other day, he asked who that was pointing to a hat (I think).

I created shoeboxes with games for us and stacked them on a table. He had been campaigning against the boxes I put together for some time. I was finally obliged to neaten up the display on “orders from the bosses.”

Burt will be the winner over the hats, especially if he finds them disturbing. Bosses’ orders.

Like a peach

Ok. We’ve entered the clingy era. We’ve been there before but not quite like this. “I want you.” “Stay with me.”

No. It is not gratifying. I would welcome his independence. I most certainly crave mine.

I may have mentioned that I can no longer “reason” that I need my time to stay well for him.

He no longer respects this even as doctor’s orders.

My only alternative is to absorb the anger and try to mitigate the agitation. Actually, his aide is left to deal with that. I leave.

Always, of course, with a promise to return. And a big I love you.

One thing

It’s never just one thing.

We are all of us, those afflicted with Lewy, those caring for them, those without a care in the world, complex human beings.

My honey’s fractured brain sees the fractures and dichotomies.

He splits them up, breaks us into  compartments of good and bad, nice and not nice. For him, it’s very personal. The bad one is not treating him nicely; it might be as small a misstep as having said no.

I am not just one person with moods and misjudgments, I am “that awful girl” who asked him not to shout in the night. Or the nice one who gave him comfort.

It’s never one thing that leads to his multiplying those attending to his needs. He has so many of us – wives, aides, and therapists – he keeps us guessing as who we might be.

A new approach?

Whatever I do, he can do better (I  believe this is attributable to the musical Annie Get Your Gun).

I have mentioned the zig zagging that winds up hi-jacking every narrative.

When I think I have a path out of a delusional trip that we’re on, I need to pause.  It’s easy to let self congratulations make an early appearance. Disappointment is likely around the bend.

That said, I began wondering if embracing the delusion wouldn’t make us both happier.

For instance, there are all these damned wives. Burt will often say, “You’re going to like her.” I fight this notion (probably on neo Puritan grounds). What if my response were “bet I will!”?

There, I already feel better.

Cyclin’

Anyone concerned over Burt’s immortal soul should take heart. This morning, he was thanking god. Repeatedly. Mostly for me; I qvell.

He was fast asleep before 6 last night and up about 5 this morning. We had an excellent time as he “discovered” we were married. “You’re so nice to me.”

He ate well, too. My leaving for the day, however, did not go so well. He’s agitated and wants to come with.

Ah well.

Proper (med) regimen


We have Emily Dickenson to thank for the wonderful image that gives hope all this lightness. We can always use some feathers whether we are caregiving or not.

It was definitely a better choice when I returned Burt to his morning meds first thing. He has, in consequence, returned to some measure of sharpness.

The delusions, hallucinations, and Capgras continue to keep him in his alternate universe. It just seems like a happier place.

He’s back to being impish.

Lewy lou-ie

I can do nothing to make Burt know who I am. I feel like I should be able to force the issue somehow.

It is heedless and needless to allow his who-are-you’s to distress me. It’s the disease.

I know who he is….

Our weekly outings are very exhausting. In the evening, when we get home, he has to ask me who I am. Which wife? is not a trivial question.

So much for “he will always know who you are.” We spouses of Lewy Body p.w.d.s are led to believe that we will always be recognized. Perhaps if it weren’t for Capgras….

So that too is exhausting. I am giving myself a 🌷⚘️🌿☘️🌷⚘️🌹🌷🌷🌹🌿🌹🌹⚘️🌹🌿

I am still grateful that our early to bed project continues to thrive.

Strength to deal with this disease lies in keeping a positive outlook.

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