Seems like one pretty common life trajectory is that you eventually hit some speed bump (chronic illness in self or child, relative incapable of living unassisted, &c.) that requires you to take on an additional full-time job as a DIY guerilla bureaucrat.

When people tell me stories about it I figure that it would just about crush me flat, and the lifetime odds of encountering it at some point are pretty good.

Realistically, people are pretty resilient and can get used to a lot.

Is anyone working on this problem? Seems like there's a lot of extremely niche domain knowledge about how to cope with these systems that's passed down informally through caregivers and social workers.

In fact as I understand it a big part of what a good social worker does is just shepherding you around the damage caused by other parts of the system. Some of the system's employees get paid to show you how to scam the system enough for the whole thing to function at all.

Said system probably haven gotten that way over generations of scams and counter-scams and counter-counter-scams, with ad-hoc rules hastily written in to prevent some enterprising Nigerian prince from getting mailed a million social security checks a month 30 years ago.

But now your mom's in the hospital and dealing with the billing rules is like getting thrown into the Battle of the Somme as reenacted by accountants.

My intellectual hubris actually stops short of persuading me I have any idea how to solve this.

But it's sobering to remember that, at any moment, anyone can just fall through a trap door into a private hell of bureaucratic propitiation.