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