Taking it to the streets

We are still scheduled to walk virtually with CaringKind on Oct 19th in CentralPark. You may throw some support to Team Burt here at the link for a fundraising page for sponsorship of our  passive walking:

https://give.caringkindnyc.org/fundraiser/5610000

Promoting or joining othet walks: 

The Alzheimer’s Association has walks all across the country. Their Manhattan walk is on Nov 16; Ridgefield, NY, is Sept 5th. For the NYC area, there are walks in SI in Bklyn in Qns. Look it up.

LBDA is walking on Sep 29th in PA and virtually. To give you more opportunities to support agencies dedicated to  dementia care, here’s the sign up for the Lewy Body Dementia Association walk.

Thank you.

My plan for now is to participate virtually but keep the option to get out into the Central Park with Burt in reserve. Our Team Burt fundraising sign up is here.

Who?

I was going to stop posting or post more discriminately. Then…

This morning, Burt was doing his who are you little darling routine. It’s his memory game in which I hear about the other wives and often how badly I treat him.

Today, we reconciled. I recounted our many years together. So far, all quite business as usual. “Why can’t I remember you?,” he asked.

“I’m losing my mind.” Burt’s tone is always so darn matter of fact.

We talked more. I kept also kept my tone  matter of fact as well. When his aide came in, he repeated his observations. She patiently told him I had been with him many years and that I would be home later to be with him again.

Need I mention how sad this is?

Burt meeting me in our lobby in the afternoon.

The chapter in which Burt worries he’s losing his mind…

Last night, he again mentioned losing his mind, and this a.m. [Wed] he said, “You have to help me. I am losing my mind.” Me: I will always help you. I am here to help you. He: “You are? Really? Thank you.”

On Repeat

This is our life is getting to be a bit repetitious. We manufacture our own excitement when dealing with Lewy but there’s all that shucking and diving, ducking and jiving. And lots of calls to say again.

On Saturday I ignored  Burt who did not settle down again last night and listened to 2 Conan O’Brien podcasts with earphones.
The on again off again sleep pattern … will be addressed soon. (🤞) I don’t guarantee that we’ll soon find a solution for the hallucinations.

Oh. And yes, I removed the hats and umbrellas from that rack.

Drama

Who needs the theater when Burt is so dramatic.*

His declaration that we’ll all be dead if we go this way or that might (or not) be out of a sincere fear.

It is, however, always on cue.

At least he liked the Apple and Eve juice.

Going out is still fraught with lord knows what, but he doesn’t fail at making it an event.

Complaints about how long we’ll be out and that wherever we are is crowded lace the outing like tight running shoes.

Today, since he said he did not want to go to the pickle ball court, we tracked through the streets to sit to eat.

He would not. At home, he told me that he was looking forward to going to see pickle ball next week.

*I told him that (that his drama had taken the place of my going to the theater. Later, (relatedly?) he offered to take me to a show.

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.

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