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When the dying process is long — living in the in-between

Your mother has been dying for three months. Or six. Or a year. At some point it stops being a crisis and becomes a condition. You've had time to adjust to the reality. You know where the bathroom is. You know how the machines work. You know the visiting hours. You know the staff. You've settled into it the way you'd settle into any other life, except the life ends with someone you love ceasing to exist.

This is a different kind of suffering than sudden loss. This is sustained uncertainty. This is waiting. This is living suspended between normal and not normal, between hope and despair, between person and ghost. This is the hard part that people don't talk about.

The waiting that becomes everything

When the doctor said "weeks to months," they meant you'd be here for weeks, or months, or they didn't know. Nobody knows. Death doesn't work on a schedule. Some people die faster than anyone expected. Some linger for longer than seems possible. Some get a little better, and hope flickers, and then they decline again. Some people are on hospice for six months. Some last three days. There's no way to know.

So you live in the not-knowing. You can't plan. You can't move forward. You can't grieve properly because they're still here. But you can't live normally either because they're dying. You're stuck in the in-between, and the in-between is exhausting.

You're tired in a way that sleep doesn't fix. You're tired of the hospital room. You're tired of the visiting. You're tired of the hope and the disappointment. You're tired of the small indignities of dying and the small moments of care and the love that never stops, even when you're tired.

The guilt about wanting it to end

Somewhere in this long process, you might have a thought that horrifies you. You might think: I hope she dies soon. Not because you want her gone. Not because you don't love her. But because you cannot watch this anymore. Because her suffering is unbearable. Because you're exhausted. Because living in this in-between has become a kind of torture.

Then you feel monstrous for thinking it. You're not a good child. You're not a good person. You're wishing your mother was dead.

But here's the thing: love and wanting the suffering to end are the same thing, sometimes. Wishing death on someone you love is not cruelty. It's the opposite of cruelty. It's seeing that they're suffering and knowing that death is the only thing that will stop it. It's being exhausted and not being able to continue, and that too is not cruelty. That's just being human.

The worst part about this guilt is that you can't talk about it. You can't say to your family, "I think it's time for her to die." You can't say, "I can't do this anymore." They might judge you. They might not understand. So you sit with the guilt, and the thought, and the shame, and nobody knows you're thinking it.

But most people who sit with a dying person think this. Most adult children wonder how much longer. Most spouses want the end. Most people who love someone who's dying have a moment where they wish, with all their heart, that it would finally be over. This doesn't make you evil. It makes you exhausted. It makes you human.

How to live suspended

One thing people learn, if they have to wait with dying, is that you have to let go of normal. Normal is when everyone is healthy and working and living toward the future. That's gone now. So you have to create a new normal, one that's smaller, slower, more uncertain.

This means accepting that you will not be productive in the way you usually are. You might not work. You might not cook elaborate meals. You might not keep your house clean. You might not do the things you thought you'd do. You live in the space that dying creates, and it doesn't have room for normal productivity.

It also means accepting the day. Not trying to control it or know what's coming. Just living the day in front of you. Is your parent awake? Then you're together. Are they sleeping? Then you sit. Is this a day when their breathing is labored? You sit with that. Is this a day when they seemed almost okay? You don't let yourself believe they're getting better. You just accept that today was a day they seemed okay.

Some days you get moments. A conversation. A lucid interaction. Your parent making a joke. A hug. These moments become enormous because they're rare. They also become something you treasure even while they're happening, because you don't know if there will be more.

You might also find that you stop pretending with your parent. If they're dying, there's no point in maintaining the usual politeness, the usual boundaries. You can tell them things you've never told them. You can ask things you've always wanted to know. You can argue, or cry, or sit in silence. The usual rules don't apply. And sometimes, in that freedom, you get closer to your parent than you've ever been.

Moments that feel like life

Somewhere in the long dying, there will be moments of actual joy. Not the joy of false hope. But the joy of connection. Your mother will laugh at a joke. Your father will take your hand and squeeze it. Your parent will remember something and tell you a story. You'll play music they love. You'll sit in the sun on the back porch. You'll remember that you love them, not as an obligation, but as a feeling.

These moments don't erase the dying. They don't make it okay. But they're something. They're proof that this person still exists, still has preferences, still has a sense of humor, still knows love. These moments are the reason you keep showing up.

You might also have moments of unexpected peace. A realization that you're here, that they're here, that you have this time together even if it's painful. A sense that the love is still there, even surrounded by all this suffering. A quiet moment where it all makes sense, not the dying, but the being together. That sense of being where you need to be, doing what you need to do, with the person you need to do it with.

The long dying teaches you things about yourself. That you're stronger than you thought. That you can do things you thought you couldn't do. That you can sit with suffering without breaking, even though it breaks your heart. That love is deeper than comfort. That presence matters, even when you can't fix anything.

When your parent finally dies, when the long waiting is over, you'll be devastated. But you'll also be relieved. And you'll feel guilty about the relief. And you'll miss the in-between, which makes no sense because it was awful. But you'll miss knowing they were still here. You'll miss the chance to sit with them. You'll miss the possibility of one more conversation, one more moment, one more chance to say you love them.

For now, though, you're in the in-between. You're living suspended. You're tired. You're guilty. You're sad. You're present. That's the job. That's the only job. To keep showing up, to keep loving, to let yourself feel whatever you feel. To live through it, even though it feels impossible.

How To Help Your Elders is an informational resource for families working through aging and elder care. We are not medical professionals, attorneys, or financial advisors. The information provided here is for educational purposes and should not replace professional consultation. Every family's situation is unique, and rules, costs, and availability vary by location and circumstance.