this is our life

The impact of dance

Dr. Julia Basso studies the effect dancing and movement have on brain health. She says (and I quote loosely) that even watching dance has a positive impact.

Watch this YouTube video interview for more from Dr. Basso on what she has documented about the healing power of movement.

Full disclosure Dr. Basso is my dear friend’s daughter-in-law. She is also a neuroscientist at Virginia Tech running The Embodied Brain Lab. Her research covers a wide range of neurological disorders, including dementia.

Burt’s on top of it

The “job search” seems to have ended in a mystery job. Mystery to me, at least, but it is vague to Burt as well.

He wants me to get him business cards (albeit they’re round, as he describes them).

He assigns numbers to his staff, and I am #1 tomorrow, then #2 the next day, etc. Ironically, I find this confusing, and he does not.

Burt reports that I will like this other wife. He says she’s a nice girl and takes good care of him. I say, “You’re a lucky man to have two of us so devoted to you.” He answers.”What?” I say again. He throws his hand in the air in an I-deserve-it gesture.

Going Up

Burt is cognitively more engaged these last couple of weeks. The rescheduled morning meds might be partially responsible.

Of course, I am grading on a curve.

Burt’s daughter asked me about the multiple wives over the weekend. This reminded me that it appeared that he recognized me more often. There are still occasions when he says, “Which wife, I have 6 or 7?”

It also reminded me that he had been a bit sharper as well.

He was back to repeating themes about how there were no jobs.

He was warning people off the stock market. He would say, “Wall Street hates uncertainty.”

He regained interest in a favorite task.

The little train that can may have just chugged up one of those inclines. Lewy down, Lewy up.

The ups are the moments we get a glimpse of what was.

Still working it out

The dominant theories right now include

He’s too warm [makes me feel a tad guilty]
He’s bored [that applies even more to staying home]
He’s genuinely afraid our aide won’t come back for him
He feels trapped in the wheelchair [a situation in which he has even less agency than on his walker]
A mispreception that the park is crowded [and all those people will interfere with our getting home]
Annoyance at having the other person [our aide] with us [he has a touch of paranoia over the aide’s role]
Resentment over the aide [he always resisted having a male caregiver]
Jealousy [“I thought it was just you and me”]
All of the above

We wound up with a little “river sit” which he seems to have enjoyed.

Feeling Useful

The desire to help out is about being able to still be a part of the life we had. It’s natural to want to contribute as you once did. This has been a thread in one of my support groups.

It has belatedly turned on that old light bulb (duh). “Aha, that explains why Burt wants a job.”

Ok, my aha moment is not so profound, except that it allowed me to humanize Burt. I regret having to put it that way, but it’s clear how much I was treating him as less-than.

He wants a job is not a punchline.

I should not allow myself to treat any of his sincereties or pleas for normalcy as funny. Yes, I need the humor to leaven the sadness and the losses, but he needs to feel helpful.

And he seems ready to return.

It’s very exciting that after he had spent months not wanting to do the laundry, he set a schedule to start again next week. He and his aide have decided Thursday will be the day.

I have agreed to his request for a two-dollar payment for his services. (You may join me in a little chuckle, but I admire his enterprise.)

If Burt’s quest for useful work continues, I will suggest he use his skills at giving advice and counsel. Talking to people is a job that Burt’s good at, and some of his suggestions can be useful. I ❤️ that he seems re-engaged.

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.