catherineldf: (Default)
[personal profile] catherineldf

 Namely, this last week.

This will be rough - please skip if you’re not in a place for rough end of life/dementia stuff.

It kicked off with my discovery that Jana had been refusing to get out of bed and wouldn’t eat or drink for a couple of days. And it was not the first time, though the previous time had been about a day in length. Her regular PCA (the one I pay to check on her) was of the opinion that it was time to 
look at hospice care and we brought in the social worker I pay to guide me through the maelstrom for a confirmation. She met with the staff and then she and I had a very upsetting (to me) conversation about time, money and energy, none of which I possess in great abundance after the last few years and how I “could keep her going” if I just did more. So she is currently nonverbal (except for the word “coffee”) or makes random noises, has no interest in books, most music, conversation, art on screen, art in books and minimal interest in TV, which she can’t process, far as I can tell. Even her PCA is having trouble getting her to engage at all in the crafts that she still loved months ago. Visits are an absolute torment for me at this point, which is why I keep her PCA on (also so there’s additional advocacy for her). I can’t take her out, originally due to her being “a flight risk” and now because I’m worried that she’ll fall. Gosh, yes, let’s “keep her going” because you see her every 6-8 months and just “know” that she’s still in there. At any rate, I was very clear about what I could do and could not do  and explained emotional, physical and financial burnout in fairly brutal terms. I talked to her CADI social worker the next day and got a much more affirming response about where she’s at (closer to hospice than my advisor thinks). But the long and short of it is that she apparently has to stop eating long enough for it to be recognized as a problem and then I can get her assessed for hospice. I am not thrilled, but there’s nothing more I can do at the moment because she’s in the midst of a “rally” right now and therefore “fine.” Dementia sucks pointy rocks.

Anyway, so that’s where that’s at for the moment. On a brighter, cheerier note, Queen of Swords Press, my little queer science fiction, fantasy and horror press, is a finalist for the Independent Book Publishers Association’s Innovative Voices publishing program! It comes with mentorship, discounts and access to a bunch of things we are still too small to afford at this stage. In short, it could really help us level up. That said, they announce the 5 winners next week and the company we’re in is pretty stellar so please keep your fingers crossed for us! 

I was hoping to have the next volume, Point of Dreams, in the Astreiant Series created by Melissa Scott and Lisa A. Barnett out this month, but we had way too many shenanigans so pushing that out until 10/10. Preorders will go up this weekend around Columbia Heights Pride, where we will be tomorrow, and St. Cloud Pride, where my wonderful assistant Alexa will be peddling our books while I deal with other things. Onward and upward, as they say.



Date: 2024-09-20 09:58 pm (UTC)
marthawells: Murderbot with helmet (Default)
From: [personal profile] marthawells
Oh god, I'm so sorry. :so many hugs:

Date: 2024-09-20 11:02 pm (UTC)
sartorias: (Default)
From: [personal profile] sartorias
Such a tough spot to be in. (I know. My sister and I were there with mom.) Wishing you tons of strength--it really sounds like you are doing exactly what you can, in advocating for you both.

Date: 2024-09-21 12:47 am (UTC)
jenett: Big and Little Dipper constellations on a blue watercolor background (Default)
From: [personal profile] jenett
I'm so sorry - it's such an awful place to be in. (But I'm glad you've got multiple points of perspective, and at least more info about what the next steps might look like.)

I'm so glad Queen of Swords Press is getting the attention it deserves, and may that continue!

Date: 2024-09-21 03:07 am (UTC)
jenett: Big and Little Dipper constellations on a blue watercolor background (Default)
From: [personal profile] jenett
Yay for the enjoyment! That's always the goal here!
(screened comment)

Date: 2024-09-21 04:14 pm (UTC)
heavenscalyx: (Default)
From: [personal profile] heavenscalyx
Ugh, I’m so sorry, that’s a terrible place to be in. I’m glad you have her PCA still

Date: 2024-09-21 04:32 pm (UTC)
radiantfracture: Beadwork bunny head (Default)
From: [personal profile] radiantfracture
I'm so sorry that social worker was so cruel.

Congratulations on the finalist status! Fingers crossed.

Date: 2024-09-25 06:01 pm (UTC)
annathepiper: (Thinking)
From: [personal profile] annathepiper
Jana's situation sucks so much and I'm sorry. But I'm at least glad to hear that you're getting what seems like decent enough advice on how to proceed. Love to you and Jana both.

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