this is our life

On the side

Things happen as we get engrossed and distracted by caregiving.

I managed to misplace (a polite way to say lose) our marriage certificate.

I feel a lot better about it since Googling that replacement can be done easily and online.

Looking for the missing item also gave me an opportunity to sort through documents.

The rearrangement may result in panic down the road when I wonder where I put everything.

I do know for and at this moment what we have and where it be.

The urgency in the search was necessitated by Burt’s wanting proof.

Burt isn’t sure who I am when I go in and out of the room. Who’s this he asks. My honest answer has him adding up Tamaras as I reenter.

Yesterday, he said, laughing as I repeated my name, “There are 60 of you.”

Why do we need documentation? I always reiterate that I am his wife.

He doesn’t know me. He requests proof. Naturally, he wants a wedding certificate and a doctor’s note.

Where our lives diverge

It’s another one of those losses. We once went to movies, watched TV series, and enjoyed outings together.

Burt would have enjoyed The Marvelous Mrs Maisel with me. Now I’m seeing it as respite when he’s asleep. He can no longer follow any plot. He’s way past the point where he would get the humor.

It’s sad. Which is not to say that I am thoroughly engrossed.

My repertoire recently expanded to include not just Grace and Frankie but also Schitt’s Creek. Mrs Maisel remains top draw for my limited but rapt attention.

Diversions are a necessity. Stay diverted.

You know the phrase

I love him to pieces. You 
Know that feeling. You've
Said it before. Now, I also
Say, "I love him in pieces."
As he falls away, stumbles
In his mind, loses his way.
Reasoning is gone, his and
Mine; I, too, am less rational
I, too, am lost or losing my
Path forward. I, too, am so
Emotional that I can cry in 
An instant, flare up in anger
At what I can’t fix or change.
Is there a purpose, of course,
I see it in caring for him, us,
Holding on so he doesn’t slip
Away. I love him to pieces.

Psychosis

Cognitive function, executive function, bradyfrenia, autonomic system, bradykinesia. There are so many impairments as Lewy bodies take over, and our loved one declines.

Psychoses. There’s a scary word. And those are the hardest aspects of LBD to manage.

I watch out for falls. Hold onto him for dear life sometimes to maneuver him onto a seat he looks like he’s going to miss.

What can I do when he’s in the thrust of a delusion?

Delusions will not be denied.

In the midst of these, I hold on tight too.

Stay calm

My role as a caregiver to a person with [Lewy Body] dementia demands I get acquainted with psychosis. A calm and contained demeanor is preferred to one in which I freak out.

In a tour of an exhibit in which art and psychiatry crossed paths, it became clear to me that the psychotic makes me very uncomfortable.

Auguste Forestier, patient and sculptor.

Francesc Tosquelles, a Spanish psychiatrist, was able to channel the creativity of his patients.

Just a slight exposure (and no live patients with whom to deal), yet I felt that frisson of “is this right for me.” In fairness to myself, I cope better with Burt’s actual behaviors and issues.

Nonetheless, the awareness was a good eye-opener.

In a serendipitous moment, I was able to benefit from a webinar on Managing Lewy right after my visit to the American Folk Art Museum.

Julia Wood of LBDA laid out the more difficult aspects, the hallucinations, the delusions, the illusions.

These are the psychoses that plague us (as caregivers) and our pwd loved ones on our journey.

Insight Memory Care Centet is support based in Virginia, which provides programming on dementia. They hosted this informative guidance yesterday afternoon. Check their website to participate in future events.

Also, look to the Lewy Body Dementia Association for information. They offer print brochures outlining the unique signs and symptoms of LBD and lots of other forms of assistance.

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.