A drawing of Connie at the piano I traced and shaded on my iPad. A print of it sits at her bedside. A birthday gift for my dad Feb 12.
It’s been a long time since posting here. But time is strange. January 2025 felt like the longest year of my life, and now February is over.
Right now Mom is in a delirious post-anesthesia rest after a surgery to put in a semi-permanent catheter. It’s tough for Dad to experience because she’s not awake, yet she sees and reacts to people and images in front of her closed eyes. He will sit with her as much as he can. The doctors say this will wear off.
We’ve had two meetings with the doctors in the last couple months. The first one they feigned the positive outlook at the possibility of eventual progress. But most of her specialists and people that worked with her day-to-day were not present. Some of those people don’t even work there anymore.
The next meeting we had with them, earlier in February, the team said outright that she is “plateauing;” That she’s nearing a point where she won’t make many strides. This has been tough to swallow because she’s not “herself” yet. Certainly she has aphasia, where she can’t remember words. But stranger than that, she still has many delusions and confabulations.
She doesn’t have a sense of self awareness. She’s not able to think and talk about the last six months from an objective perspective. She has memories. She will surprise you with what she can pull from the ether. And then she will tell you a made up story about going to the grocery store yesterday and the nice people she met.
It’s sad because we haven’t been able to truthfully tell her that her favorite Aunt Margie recently passed away in her 90s. We didn’t tell her when beloved Auntie Jennie passed away last month. We’re protecting her from reality, when all we want in this world is for her to be based in reality.
My biggest disappointment is that since November when I was there, she hasn’t gone near the piano. I watched the piano reconnect pathways in her brain. I saw her use two hands and sing. But the care team told us this wasn’t “measurable.” It’s not part of their practice. And she hasn’t had the ambition, even when Dad and her bandmates ask her if she wants to play.
So since she’s on this plateau, and the rehabilitation folks have run out of tricks and ideas, the time has come to begin the process to move to 24-hour care, close to Dad, close to family, close to friends, close to the home in Cortland, New York. But she isn’t going home, so to speak. She’s going to a skilled nursing facility. The internet ratings are quite low for all of the local options. But other people I trust say they’re great places. Certainly whatever daily “rehabilitation” that’s been in her practice is going to suffer. But in exchange for more visitors. More friendly familiar faces. More family. Maybe more outings. Maybe more music.
She’s on some waiting lists. We’ll inform you when a plan is solidified.
I’ll be home with her for the month of June.
Love you all. I’ll give an update when we know what the next chapter brings. We’ll let you know when she’s more herself after this recent surgery.
-Luka