The Wheel Comes Around

What you're learning from them, and what your kids are learning from you.

You know the version of this article I'm not going to write. The one where a woman cares for her dying mother and learns to cherish every precious moment, and there's a line at the end about angels.

You'd throw your phone/laptop across the room.

So let's start somewhere honest. You didn't choose this. If somebody offered to take it all back tomorrow, most of you would say yes before they finished the sentence. Nothing here is worth what it's costing you, and I'm not going to pretend otherwise.

But you are learning things. Not because suffering is a good teacher, it mostly isn't. Because you're standing close to something most people spend their whole lives avoiding, and you can't look away. Things get clear at that distance. It doesn't make the loss worth it. It's just true.

Here's what tends to be in there.

They're still in there

Ask anyone who they are and they'll tell you what they do. The job. The kids they raised. The house they keep standing.

Take all of it away and most of us couldn't say what's left.

You've watched it get taken. She can't remember your name. She can't follow the recipe she made every Christmas for forty years. By every measure anybody uses to decide a life is going well, there's nothing there.

Then a song comes on and she knows every word. Or she laughs at something on the television in exactly the way she's laughed since you were six years old. And there she is.

Hold onto that, because you're going to need it for yourself. On the days you get nothing done but keeping one person clean and fed, you'll call it a wasted day. You're measuring with a ruler you have already watched break.

You can win the argument and still lose

She says she hasn't eaten. She ate an hour ago. The plate is in the sink and you can prove it.

So prove it, and watch what happens. She gets angry, or she gets ashamed, and now you've lost the whole afternoon and she still doesn't believe you.

She wasn't asking about lunch. She was scared, or embarrassed, or holding onto one thing she still gets to be right about. Answer that instead and the room goes quiet.

Once you can see it, you see it everywhere. The kid who's technically wrong about curfew. The brother who won't help and has bad reasons for it. Almost nobody is arguing about the thing they're arguing about. You learned that arguing about a plate in the sink, and you'll use it for the rest of your life.

They can hear how you sound

Words go before feeling does. Somebody who can't follow a sentence can still read your face in about a second.

Come in braced and rushing and they get agitated, and neither of you knows why. Come in slow, even when you're faking it, and something settles.

Which ought to give the rest of us pause. If tone is what's left standing after the words are gone, tone was probably always carrying the load. Every conversation you've had with your children, they remember how the room felt more than what you actually said.

It comes down to very small things

When somebody's world shrinks down to two rooms, you find out what still gets through.

A warm drink. Sun through the window in the afternoon. One song from 1958. A dog's head on a knee. A hand on your back that isn't in a hurry to be somewhere else.

That's it. That's the whole list of what it takes to give somebody a decent hour, and it's a lot shorter than any of us were led to expect.

This is not a case for suffering being beautiful. It isn't. It's that you're standing there watching somebody take real pleasure in things you walk past ten times a day on your way to something you'll have forgotten by Friday.

You are looking at your own future

Here's the part nobody says out loud.

That's you in the chair. Not as a metaphor. You, in thirty years or fifteen or five, and somebody will be standing over you deciding whether you can still be trusted on the stairs.

You know things now that most people don't find out until it's too late to use them. You know which paperwork never got filled out. You know what it's like to stand in a hallway at two in the morning guessing what somebody would have wanted, and then carry that guess around forever.

So use it. Write down what you want. Name the person who gets to speak for you. Say it out loud to your kids now, while it's a conversation instead of an emergency.

And the rest of it counts too. The knee you keep meaning to get fixed. The trip you'll take when things calm down. The sister you stopped speaking to over something you can't fully reconstruct anymore. You have evidence, up close, that the window closes without announcing itself. Everybody else gets to pretend. You don't. It's a terrible gift and it's still a gift.

Somebody is watching you do this

Now the karma part, and I mean the ordinary kind, not the cosmic kind.

Your kids are watching. Maybe they're grown. Maybe they're teenagers who appear to notice nothing. They're watching. They're learning what a person does when somebody gets old and inconvenient and hard to love, and they're learning it from you. In forty years they'll run it back without ever deciding to.

That is not a reason to be a martyr, and I want to be clear about it, because guilt is already doing enough damage around here. A kid who watches you disappear into this learns that disappearing is what's required. Then either they do it and it wrecks them, or they don't and they feel like garbage for the rest of their life. Neither one is something you want to hand down.

What they should see is somebody being decent to a person who can't give anything back. And also somebody who says out loud that this is hard, who asks for help, who doesn't vanish entirely into it. That's the thing worth passing on. Not the endurance. The whole picture.

The wheel turns. You're teaching the people behind you how to turn it.

Who actually showed up

You found out things about your family that you'd rather not know.

Somebody who should have helped didn't. Somebody said let me know if you need anything eleven times and never once picked up a phone. And then a neighbor you barely knew started leaving food on Wednesdays, and a cousin you hadn't spoken to in years started calling every Sunday and never missed one.

It hurts. It's also information, and most people never get it this clearly. Some of those absences are worth a hard conversation, because people are cowards more often than they're cruel, and sometimes they just need to be told. Some of them are a permanent answer to the question of who gets your time when this is over.

You'll know which is which. You probably already do.

The part that isn't a lesson

Now I have to take some of this back, or at least fence it in.

Not all of it means anything. A lot of it is just loss.

Dementia is not a spiritual journey. Disability is not a gift. Mental illness is not a lesson plan, and the person you're caring for is not a supporting character in your personal development. They are a whole human being living through the worst years of their own life, and whatever you learned sitting next to them is a side effect, not the point of it.

You don't owe anybody a silver lining. If somebody tells you this is all happening for a reason, you're allowed to decide that's nonsense and keep every bit of your anger. Some people find meaning later, on their own schedule. Nobody has to find it on a deadline and nobody has to find it at all.

Two things can be true. This can be pointless and grinding and unfair, and you can still walk out of it as somebody you'd never have become otherwise.

For now

You don't have to do anything with this today. It isn't homework and you have plenty of that already.

If you do one thing, do the paperwork. Write down what you'd want. Tell somebody. That one has a clock on it, and you of all people know what happens when it runs out.

The rest will keep. You're not supposed to be gathering wisdom right now. You're supposed to be getting through Tuesday, and that counts as plenty.

Florence for Caregivers publishes general information for family caregivers. It is not medical, legal, or financial advice, and it is not a substitute for talking with a doctor, attorney, or licensed professional about your own situation. Programs, eligibility rules, and phone numbers change, so confirm details before you rely on them.