Hospice – Being Elderly Part 2 – Heads up – No newsletter next week

Readers and Friends –

Welcome to my fifth newsletter. (Number 4 was just sent because … I’d thought I sent it last week… you’ll understand why below)

Thank you for reading. You can read all of my previous newsletters at archive at my blog – blog.sbdavis.com.

I hope you’ll treat this letter as one side of our “asynchronous conversation” … I really want to hear from you.

If you like this, please share, if not – let me know – this is a work in progress… and if this newsletter isn’t a good fit, definitely unsubscribe and I wish you all my best (perhaps we’ll reconnect some other day or some other way).

If someone shared this newsletter with you and you like it, subscribing is easy.

As of today, there are 3 of you – thank you all again. Time to apply the Bootstrapper Ratio of product work and sales & marketing! (but not this week!)

I’m (slipping a bit) for my target with one article and one newsletter a week – thank you for helping keep me on track!

BTW, I’d appreciate a note if I forget to send my newsletter…if I can do something similar to help you keep yourself accountable, let me know!)

… EXCEPT, given everything that is going on, I am pretty sure I won’t get a newsletter out next week.

… the newsletters are doing OK (barring hitting the “SEND” button!) … my other work is being stalled by moving… and LIFE STUFF…

Hospice

Last Friday afternoon, my mom was admitted to hospice.

I’m not sure if you’ve gone through this for a close family member where you are THE or one of the responsible parties.

First of all, hospice is not “irreversible”. You can exit hospice without dying. It simply means that dying may be coming soon and there are additional support services that become available (they are free as hospice is a not-for-profit service).

(My macabre sense of humor would put the Monty Python line “I’m not dead yet” here somewhere)

Hospice doesn’t cover everything however.

If I was to speculate, I think there are two reasons to “get” into hospice:

  • crisis of health
  • crisis of support

The first, most obvious, scenario is if your health is severely declining for some reason. Hospice has a different focus than traditional healthcare in that it focuses on making sure you’re comfortable (palliative care) rather than trying to “fix” or “cure” you.

The second, and I THINK our case, is a crisis of support. Where your support systems get out of whack with what you need. In my parents case, this was because things were changing, but slowly. We’ve all experienced this with kids where you are going along and then all of a sudden they’ve grown a mustache and want to borrow your car.

For us, it was the opposite, a slow accretion of problems and issues and other things until all of a sudden, things aren’t working anymore (in our case, for both of my parents, but specifically for my mom).

With the benefit of 20-20 hindsight, this has been building up for at least 3 years (1 year before my parents moved into assisted living).

It doesn’t matter. We are here.

The other thing that has been keeping me busy is that hospice doesn’t solve everything. I’ve kind of moved into the “quarterback” role for my parents – making sure that whatever needs to be done, gets put in place and is done, while not taking away their independence.

(I’ve become kind of literally their external brain)

So, I’ve been lining up caregivers, dealing with changing support with their facility, hiring a doctor with more of a geriatric focus for my mom in case she does graduate from hospice,….lots of stuff that needs to happen somewhere between immediately and quickly.

Hiccups, of course, but I think we are on the right track.

… our Move approaches

We are a week out from moving, so, lots of things need to happen.

We’re in pretty good shape on packing. Our new landlord is supposed to let us start moving boxes into the garage this weekend, which will hopefully make things go smoothly.

The biggest “win” this week was to get our kids registered for school. Absurd amounts of documentation and fat-fingering of documents (it is bad when fax machines look progressive).

The school district person who was processing our materials said they have to do this for “security” reasons.

As “security” used to be my thing, I said, “Nope”. It is simply that no one has bothered to spend even modest amounts of money to make these systems work better or securely.

… probably why I’m not doing security anymore!

The number of places you need to change your address is insane. I suspect it is a problem no one will fix because there just isn’t enough of a financial reason for things to work better.

“TV isn’t on TV any more”

Everything seems to be on a premium premium service now (it isn’t HBO, it’s HBO Max or Disney+ or FillInYourNetworkCompany+Max+Extreme++). I think a big reason is that the major new and existing companies want to bypass the cable companies and, if they’re smart, build a direct relationship with their customers.

I’ve convinced my wife to say goodbye to cable. We’re going 100% Roku and HD TV. Have any of you thought about that? At first blush, our out of pocket expenses are going down.

I’ll let you know how it goes.

… unfortunately, I couldn’t get rid of Comcast/Xfinity entirely, they have the “best” data service by far in our new neighborhood (which is pretty unimpressive in high-tech Palo Alto).

I tried several talking to other companies, but they mostly seem to be riding on AT&T’s DSL infrastructure – they were busy telling me about their awesome fiber backbone, but it kind of doesn’t matter if the last mile is legacy copper. I didn’t see any sensible high speed wireless WAN options.

I’m kind of suprised no one has forced the cable companies to allow other businesses to ride on their coax infrastructure.

The only upside of all of these calls and online forms is that I’ve definitely memorized our new address.

(I will say it is surprising how many businesses DON’T have change of address online forms – SAS opportunity? embedded widget? certainly cheaper than a call).

Next week… the big move.

​Systems Collection

Work and social media were basically my sanity break this week.

So, thank you for your connections and interactions, they were a wonderful distraction!

Only one more system this week for my systems collection on Notes Processing. I think there may be too much attention to the archival part of notetaking systems and not enough attention to the actual process of raw note taking… also the “what next” piece once you’ve taken them, but that may come later.

Tyler King had a super article on “The Thriving Wage” that is becoming part of my “rethink” about what is the purpose (or purposes) of a business. Questions I’m asking – what is the relationship of our businesses to our communities? to our employees? to our society?

Big thoughts are swirling.

Podcasts

Speaking of Tyler, his podcast “Startup to Last” with Rick Lindquist hit 100 episodes – which is really impressive. Lots of good lessons learned about why you should have a podcast. I’d love to get back into podcasting (my podcast, Disability Democracy, lasted eleven episodes before I put it on “hiatus”).

They nailed part of my problem. I was scripting the podcast, recording it, then editing it, as a monologue. Three hours for a less than 20 minute show…. which was basically an audio newsletter… so, back to newsletter for me until I figure out how to podcast again (which was definitely fun).

Indie Hackers had a super episode with Arvid Kahl on audience. He’s got a new book out called “The Embedded Entrepreneur“. Really smart, systematic approach, at least from his discussion with Courtland Allen. I’ve picked up the book and just started reading it.

Games, Disability, and Social Media

I started my “audience building by being super helpful” on Twitter this week with my GamesByHand account. Twitter is also working pretty well for me with my Disability Media Wire account. I’ve done some interesting networking and made some cool connections… we’ll see where it goes.

I do think it is helpful to build separate accounts for different “personas”. The GamesByHand account and Disability Media Wire account can be super focused and serve their audiences while I can pretty much chat about anything on my personal account.

I do have an overall “unrelentingly positive and helpful” view of social media. Not that I don’t talk critically about serious issues, but always with a positive solution focus.

I call it my “Rainbow Mayberry” strategy 🙂

Clojure

No programming time, but a couple of videos. Time to start programming (after the move of course). My first project, an asynchronous game platform for Battleship Poker inspired by Water Cooler Trivia (which I heard about in another episode of Indie Hackers). This is on a leisurely schedule as part of my overall “Game Plan”.

Back to packing and parents.

All my best.

Steve

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