I Stay, But I Don’t Disappear

On caregiving, complicated love, and the grief that doesn’t arrive all at once.

Sitting in a hospital room, I find myself here again.

Seventeen months later.

When my father survived the first stroke, we knew this might happen again. Not if—but when. We just didn’t know when.

A part of me knew this wasn’t over. That something in his brain was fragile in a way we couldn’t control. And now I am back inside a familiar, disorienting landscape—one I thought I had already walked through, or at least moved beyond.

Grief doesn’t move in straight lines. It circles. It returns. It asks new questions. And this time, the questions feel different. Because now there is more context.

They’ve told me he has Cerebral Amyloid Angiopathy—CAA. A condition that weakens the blood vessels in the brain over time. One that doesn’t just affect the body, but the mind—regulation, mood, personality. And so I find myself asking something I never could before.

Was it him? Or was it his brain? Or was it always some complicated mix of both?

The disease develops slowly. Quietly. Over years.

Which makes me wonder about earlier—the moments that felt sharp, the reactions that felt disproportionate, the way I learned to read him, to adjust, to become the mirror of his moods.

Was that who he was? Or was something already shifting beneath the surface?

I know now that the first stroke he had—the one that changed everything—may not have been random. It may have been part of this. The beginning of something that was already quietly unfolding. The same thing that, over time, left him with the cognitive changes we would later call dementia.

I don’t know that I’ll ever have a clean answer. What I do know is this. Because alongside the questions, there is something else that doesn’t feel new—just clearer now.

I have always felt sorry for him. I don’t know if that’s the right word—but it’s the closest I have.

It began the moment we left, when I was nine. Something in me turned back toward him, even as I was walking away. And it stayed. Quietly. In the background of everything. Not loud enough to name. Not strong enough to override what I experienced. But present.

And now, seeing him like this, it rises again—more visible, more undeniable. Not in a way that erases the past or rewrites what I experienced. But in a way that recognizes how disorienting it must be to live inside a mind that is changing—losing its ability to filter, to regulate, to hold. To feel things more intensely than you can contain. To become someone you may not even fully recognize.

Some people sit quietly at the bedside, keeping vigil. I sit there too. And I write. It is how I release. How I make sense of what has no clear shape.

Because I am alone in this in a way I wasn’t before. I don’t have my mother to call. To tell her everything that is happening in real time. To have her understand—not just intellectually, but viscerally—because she would have felt it too.

Now, it is just me. And my thoughts. So I write. And maybe that will help.

Being back in the hospital again feels like a kind of sensory overload I can’t fully escape.

The yelling in the hallways. Voices calling out for help. The constant beeping of machines. The interruptions. The urgency. The unpredictability—a low hum of distress that never quite turns off.

And as someone who feels everything deeply, it becomes almost unbearable.

The first time, I didn’t know how to protect myself from it. I felt everything. Everyone. Their fear. Their confusion. Their pain. It drained me. Exhausted me. Left me disoriented in ways I couldn’t name. I didn’t have anything to shield me from it.

This time is different. I am still here. Still present. Still beside my father. But I am also protecting my energy. I step away when I need to. I don’t take on what isn’t mine to carry.

I stay—but I don’t disappear.

The one place I still feel myself soften—where the boundary isn’t as clear—is with him.

I can feel what he feels. Or at least, it feels that way. I sense that somewhere inside, he knows what is happening. And there is something in that knowing that feels heavy… tired. Like he doesn’t want to live this way.

And if I’m honest, I don’t want that for him either.

I don’t want him to be trapped inside a body or a mind that no longer feels like his own. He has fought for a long time. And now, more than anything, I find myself wanting peace for him. Not an ending defined by struggle—but one that is gentle. One that allows him to rest.

I don’t know what the next days will bring. But I also know this time is different.

He survived the first. This time… I don’t think he will. The question is no longer if—but how long.

I find myself wondering things I never used to— whether he will see his 75th birthday, whether somehow both of my parents will have left this world at the same age.

And sometimes, quietly, I wonder if my mother is already there, preparing him in a way I can’t see.

And yet, here we are—48 hours in, and he is still here. Eating a little. Drinking a little. But in many ways, back at the beginning—quiet, not speaking much, unable to walk.

Like something in him refuses to let go.

There is a part of me that sees the strength in that—something almost like a phoenix, rising again But there is another part of me that wonders… to what end?

Could he survive this again?

And if he does—is it fair for him to keep living inside a mind that no longer feels like his own?

When my mother died, my grief felt like I was being swallowed whole. Like quicksand—slow, consuming, pulling me under while I struggled for air I couldn’t find.

This feels different. Quieter. But no less complex. I’m not even sure who I’m grieving.

My father, as he is now. The longing for my mother. Or the version of us that never quite got the chance to exist.

A friend said to me recently, does it matter? You have now. Just ride the wave for what it is. How you will feel afterwards—we can’t predict that.

And maybe she’s right.

Because when a parent lives with a chronic condition like this—something that changes them slowly—you begin grieving them long before they are gone.

And then, in these final chapters, something rises again. A kind of residual grief. Not new, but not fully named either. It sits somewhere between what was, what is, and what never got to be.

And I’m not sure I have the words for it yet. Only the feeling.

And for now, that feels like enough.

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