brainwane: A silhouette of a woman in a billowing trenchcoat, leaning against a pole (shadow)

My mother died this year, after a long decline in her health, and I was one of the main people who helped take care of her. (Here’s her obituary.) While caring for her, preparing for her death, and handling logistics afterwards, I learned a lot from online resources, various professionals, and friends. So I'm trying to pass on some things I learned by sharing them in a new blog post: Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned.

Topics:

You HAVE to take care of yourself: what happens if you don’t, the minimum you have to do, and checking for emergency levels of stress.

Changes to expect in the months, weeks, and days before death: read this free guide.

Checklists for before and just after death: a few free lists and workbooks to help you plan things and take care of logistics.

Wills, powers of attorney, and advance health care directives: start before you need them, and LegalZoom is fine.

Easy-to-eat food, and letting your friends help you: MealTrain, deliveries, and what food is easiest.

Hospital chaplains can do a lot: even if you’re not Christian, they can connect you to useful people and resources.

Patient advocacy (which means catching mistakes): the medical team will probably accidentally miss stuff unless you remind them.

Medical notetaking at appointments and the bedside: be a patient advocate, provide continuity of care, and prevent mistakes; make and bring basic records, and keep up during a hospital stay.

Researching specific treatments and how to perform at-home procedures: look up science and instructions by professionals so you can know what’s happening and how to troubleshoot.

Organ and body donation, and donating unused medicine: try to do paperwork before death, and have a Plan B.

Palliative care, hospice, insurance (including Medicare), and hospice facility eligibility: the doctors are giving you subtext you need to understand.

Delirium and persuasion: it’s hard to be with someone who’s losing connection with reality, but I have some tips.

Music for comfort: calming playlists can calm agitation, and be solace if you’re not there.

Books and blogs that helped me prepare for this: I recommend some memoirs and how-tos.


This was, at times, hard to write. Hope it helps. Please feel free to share it publicly and widely.

brainwane: My smiling face, including a small gold bindi (Default)
I've just written some thoughts on my reflections on the ethics of using Whisper, a new speech-recognition tool that derives its power from machine learning. (The post also has some how-to guidance on how to use it, and examples of how I use it.) Might be interesting to folks here.
brainwane: The last page of the zine (cat)
As I celebrate my fifteenth wedding anniversary and think about the long durable things we work on, I am thinking about patience.

"Somebody Will". "I am willing to sacrifice something I don't have / For something I won't have / but somebody will someday."

I've been attempting to work on my patience. I'm working on a book which will be the longest document I've ever written, and which will probably go through more and longer editing and revision passes than anything I've ever made. I'm doing this because I see an infrastructural need in free and open source software, and even if this book succeeds it will take years to change the field. The project of FLOSS, itself, trying to liberate people from being programmed by the software we use, is so huge and slow. And that's only one of the wheels against which I want to put my shoulder; there are so many gross, exploitative, destructive systems I want to smite.

I'm sustained by words by Tressie McMillan Cottom:

"You just have to know that they won your lifetime. It doesn’t mean you don’t try or work or whatever but you have to learn to fight for wins you won’t experience. That’s life, I think. That’s what I get from old Black people. You do it because it needs to be done, not because it’s being done for you."

and by João Costa Vargas:

“Once we accept that we are not wanted. Once we accept that we are not loved. It is very liberating. .... once we accept the logic of the runaway slave.... we can begin to do the work of abolition.”

I am loved; the support of loving friends -- like my spouse -- makes it more possible to accept the possibility, the reality, that I/we have opponents and that they do not love me/us. And to plant seeds that I hope the next generation can harvest.
brainwane: several colorful scribbles in the vague shape of a jellyfish (jellyfish)
A few days ago I read a Huffington Post article about pandemic burnout and a therapist suggested that people should try to identify the biggest things stressing them out and set some limits around them. So I asked my friend the other day if he and I could have a call and sort of help me talk through that exercise, and so we did that last night.

Cirbus advises her patients to first identify the things stressing them out the most — maybe it’s the news, a job, or toxic convos with a friend — and make a plan to address them and set some healthy boundaries. From there, she recommends focusing on one or two things a day that you can accomplish.


I'm working on a book proposal and it is kind of a drag. Right now I'm in the phase of rewriting and reformatting stuff so it fits in various publishers' templates, which is tedious.

My friend and I talked about when I had last taken something of a vacation (a staycation of course). I haven't really intentionally taken multiple days OFF from work (even if it's unpaid work on the book) since like September, I think. I feel like I tried to take some time off in late December -- I made a vid, after all, so I must not have been trying to do client or book work -- but also that was during the Biden-has-not-yet-been-inaugurated-oh-God-what's-going-to-happen-next political mood which was not particularly conducive to relaxation.

So once I finish and send off this book proposal I'm going to take a week off and, like, make fanvids and read some "I've been meaning to read those for years, I'm sure I'd enjoy them" books, like Max Gladstone's Craft series and/or Becky Chambers's books. Maybe binge-watch a TV show.
brainwane: My smiling face, including a small gold bindi (Default)
I am writing a book about open source maintainership. I had planned to get the book to editors/agents by the end of this year; I have made very little progress on it this year so now my goal is to have a small self-published early version of the book available by the end of the year.

Recently I wrote up a blog post about how the hobby writing project I did Sept-Oct felt doable for me, and how to apply those lessons to my book project I've been procrastinating on. Having a little writing prompt every day feels like it will help. I'm also planning on blogging stuff as I write it, or posting it publicly somewhere. Maybe a GitLab repo to start?

November -- there's NaNoWriMo. It's for novels. I saw that there are some rebels who use it for nonfiction, but I don't want to deliberately contravene the goals of NaNoWriMo so I'm not signing up for it formally, but I am committing to writing each day in November as a way to accumulate a lot of progress and momentum for the book.

Today I sat down with Leonard and he helped me restore my faith in my current outline, and I developed a template for each chapter which will make it easier for me to write them, and I wrote seven writing prompts so now I have writing exercises/chapters to start for each day in the coming week.

I also signed up for a daily words community on Dreamwidth, [community profile] thedailywriter, to give myself people I am accountable to. I will also tell y'all: I want to write 400 words per day in November, as a minimal goal. On good days I know I will blow way past that! But just -- every day I want to write at least 400 words.

Any of you doing daily writing in November? If you're posting daily "I wrote [number] words!" then where are you doing that? (Edited to add: Or whatever your writing goal is -- duration-based, for instance.) I'd like to join in.

[Cross-posted to Cogito, Ergo Sumana]
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