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The Longest Slow Motion

OLD PEOPLE SITTING ON A COUCH

Nobody tells you that watching your parents age is a slow-motion version of every emergency you’ve ever prepared for, except there’s no emergency. There’s no single moment. There’s just Tuesday, and your dad is a little slower getting out of the chair than he was last Tuesday, and you notice, and you don’t say anything, and you drive home thinking about it for forty-five minutes.

I worked in long term care. I know what this looks like from the professional side. I’ve done the intake assessments. I’ve sat across the table from families who waited too long, and I’ve sat across the table from families who acted early, and the brutal truth is that the outcomes aren’t as different as you’d want them to be. The system isn’t built to catch people. It’s built to process them after they fall.

Here’s what I mean.

“Aging in place” is the goal. Everybody says it. Every geriatric care pamphlet, every AARP article, every well-meaning doctor. Stay in your home. Maintain independence. Age with dignity in the place you know. Great. Wonderful. I agree completely. Now try to actually make that happen.

The resources exist. On paper. There are programs for meal delivery, for home modification, for caregiver support, for transportation, for medication management. They exist. They are real. They are also buried under seventeen layers of bureaucracy, underfunded to the point of having six-month waitlists, and scattered across a patchwork of county, state, federal, and nonprofit jurisdictions that don’t talk to each other.

So what springs up to fill that gap? An industry. Companies that charge money — sometimes a lot of money — to help people find free resources. Let that sink in for a second. The services are free. Finding them costs money. Because nobody has funded the part where you actually connect a human being to the help that theoretically exists for them.

It’s like building a hospital and then not putting up a sign. The hospital is there. The doctors are there. But if you don’t already know where it is, good luck. And if you can’t afford the guy selling maps, even better luck.

I get angry about this and then I feel stupid for being angry, because I knew this. I’ve known this for years. I’ve been the person explaining it to other families. I’ve used phrases like “navigating the system” and “advocating for your loved one” as if those are normal things that people should have to do. As if the system shouldn’t just fucking work.

But now it’s my parents. And suddenly “navigating the system” isn’t a professional skill I’m deploying on someone’s behalf. It’s me, on hold with the Area Agency on Aging for the third time this month, trying to figure out if a program I heard about from someone who heard about it from their neighbor is actually still funded.

The thing that kills me — the thing I keep coming back to — is that the seniors themselves have to reach out. Or their families do. The system is opt-in. You have to know the help exists, know how to ask for it, know who to ask, and have the energy and cognitive capacity to follow through on a process that was designed by people who apparently have never met an 80-year-old.

My parents are capable, sharp people. They can do this. For now. But I’ve met a thousand families where the parents couldn’t, and the kids didn’t know they should, and by the time everyone figured out what was happening, the only option left was the one nobody wanted.

That’s not a failure of individual families. That’s a failure of infrastructure. We decided as a society that people should be able to age at home, and then we defunded every mechanism that makes that possible, and then we act surprised when people end up in facilities they didn’t choose and can’t afford.

I don’t have a solution. I have a spreadsheet with phone numbers and a working knowledge of which programs are actually functional versus which ones are just websites. I have the advantage of having done this professionally, which means I know the right questions to ask and the right tone of voice to use when you’ve been transferred four times. Most people don’t have that. Most people are just trying to figure out what happened to the person who used to never need help, and they’re doing it while holding down a job and raising kids and pretending they’re fine.

If you’re in this — if you’re watching it happen and feeling the specific helplessness of loving someone whose body is making decisions their mind hasn’t agreed to — I don’t have advice. I have solidarity. And I have the suggestion that you start the conversations now, before you need to, because the system sure as hell isn’t going to start them for you.

Take care of your people. Hug them while they’re here. And call your Area Agency on Aging before you need to, because the waitlist starts today.