You called your mother today.
She answered on the fourth ring. She sounded like herself for a moment — that lift in her voice when she recognizes you. Then, three sentences in, she asked how your son is doing at school.
Your son is 38. He hasn't been in school for almost 20 years.
You corrected her gently. She laughed and moved on. You did too. But after you hung up, you sat in the car in the parking lot for a while, and you didn't know why you were crying.
You're grieving her. You know she's still here. But some part of her isn't, and some part of you already knows it. And there isn't really a word for that in most of our lives.
There is one, actually. It's called anticipatory grief. And if you've been carrying it in silence for months or years, this post is about naming it out loud.
What Anticipatory Grief Actually Is
Anticipatory grief is grief that starts before someone dies. It's most common with dementia, but it happens with cancer, ALS, long declines from heart failure or Parkinson's — any illness where the person is slowly leaving before the body does.
But the textbook definition doesn't capture what makes this kind of grief so specifically brutal. Here's what does:
You're not losing them once. You're losing them in pieces, over years. And every piece hurts separately.
You lose the shared memories first. They can't reminisce about your childhood the way they used to. You lose the person who used to give you advice — now you're the one telling them what to do. You lose their independence, one piece at a time: the driving, the cooking, the ability to be alone in the house.
You lose their recognition of specific things — a joke you always shared, a phrase they used to say, a story they used to tell. You lose the way they laughed at something only the two of you found funny.
Eventually, sometimes, you lose their recognition of you.
And under all of it, quieter but heavier: you lose the relationship you thought you'd have as they aged. The wisdom you thought they'd share into their eighties. The grandparent you thought your kids would know. The version of them you were counting on being there for the next chapter of your own life.
Here's what needs saying: each of these is a real loss. They're not "not-real-losses because they're still alive." Grief without a body is still grief.
You're not being dramatic. You're not grieving too early. You're grieving what's actually happening.
Why This Kind of Grief Is So Isolating
Anticipatory grief is uniquely lonely, and it's worth naming why.
There's no permission structure. When someone dies, people bring casseroles. Cards arrive. Coworkers say "I'm so sorry." There's a ritual for that grief. There is no ritual for "my mother is still alive but I lost her last Tuesday when she stopped knowing what year it is." Nobody sends a card for that.
It's ongoing. Regular grief has a starting point. Anticipatory grief has no starting point — it's already been happening for months when you notice it, and it will keep happening for months or years more. You can't fall apart, because you can't fall apart for that long.
It gets tangled up with guilt. You feel the grief, and immediately feel guilty for feeling it. They're still here. I should be grateful for that. But feeling grief doesn't mean you're not grateful. It means you're paying attention to what's changing.
It's invisible to almost everyone. Your friends see your parent at Christmas dinner and say "she seems fine!" — because she can still hold a short pleasant conversation. They didn't see the eight repeated questions in the previous hour. They didn't see the missing name. They see the surface. You've been watching the underside for years.
Which brings us to the loneliest part of the whole thing:
You're grieving someone who is still, in most of the world's eyes, alive and well. So you grieve alone. And that's part of why it hurts as much as it does.
What Anticipatory Grief Actually Looks Like
Anticipatory grief doesn't always feel like sadness. It shows up in ways caregivers often don't recognize as grief at all:
Random tears in the car after a phone call. You don't know why you're crying, but you can't stop for a few minutes.
Sudden waves of tenderness. You find a photo from ten years ago and can't quite breathe.
Numbness. Sometimes it feels like nothing at all. That's grief too — it's protection.
Irritation at small things. Dishes in the sink. A delayed appointment. A cashier who's slow. That's grief coming out sideways because it can't come out straight.
Preemptive mourning for your kids' future. Knowing they won't know your parent the way you knew them.
Watching them sleep and feeling relief that it's a quiet moment. Then feeling horrified that you felt relief.
Rehearsing their funeral in your head. Sometimes accidentally, sometimes on purpose, and always with shame afterward.
All of these are normal. All of these are grief. None of them mean you love them less.
If you're reading this and recognizing yourself in three or more of these, you're not losing your mind. You're grieving.
What Actually Helps
There isn't a five-step plan to "get through" anticipatory grief. Nothing overcomes it. What follows is what actually helps you carry it.
Name it out loud. Say the words to yourself, and if you can, to one other person: "I'm grieving my mother, and she's still alive." Naming it is the first thing that makes it survivable. Silence is what makes it crushing.
Let yourself grieve the specific losses. When your father can't tell the story he used to tell, grieve that story. When your mother doesn't recognize your kids anymore, grieve that recognition. Don't wait for the "big" grief to give yourself permission. The small griefs are real too, and they need their own tears.
Find people who understand. The Alzheimer's Association Heart of America Chapter, which serves both Kansas and Missouri, runs support groups for dementia caregivers across the KC metro. Local hospice organizations often have bereavement groups that welcome anticipatory grief too. Being in a room with people who get what you're carrying does more than most professional help, because they don't need it explained.
Talk to a therapist if you can. Anticipatory grief is heavy. It compounds over years. If it's affecting your sleep, your work, or your other relationships, this is worth professional support. It's not a character flaw. It's a load that's genuinely too heavy to carry alone.
Take the moments that are still there. They're not the parent you remember. But they're still your parent. A hand held for an hour. A song they still remember the words to. A shared cup of coffee where nothing needs to be said. Those moments are not consolation prizes. They're their own thing. They're worth showing up for.
One Last Thing
You will keep losing them, piece by piece, for however long this takes. And when they eventually pass, you will grieve again — differently, but genuinely. Some people are surprised by that. They assume all the anticipatory grief already used up the grief. It doesn't. There's more after.
But knowing that this — right now — is real grief helps. It stops you from wondering what's wrong with you. It gives you language for the tears in the parking lot. It lets you tell your friends, when they ask how you are, "I'm grieving my mom, even though she's still here. It's hard to explain. But that's what's happening."
And it lets you be gentler with yourself. Because someone who's grieving deserves gentleness, whether the person they're grieving is gone or not.
I think about the times my mother could walk through a grocery store and tell you within pennies what the total would be before we got to the register. Those moments are gone. And I grieve them. But I also treasure them — because they were her, all the way down.
You're not making this up. You're not being dramatic. You're carrying something almost nobody around you can see.
You're not alone.
If you're finding it hard to hold this weight on your own, our Caregiver Toolkit has resources for support, and our What About Me? page is built for exactly this kind of moment.
Frequently Asked Questions
Is it normal to grieve a parent with dementia before they die?
Yes. This is called anticipatory grief, and it's one of the most common — and most invisible — parts of dementia caregiving. You're grieving the loss of the person as they were, the relationship you had, and pieces of them that are already gone even while their body is still here. This is a well-recognized form of grief, not something you're imagining.
Will I still grieve when my parent actually passes, or does anticipatory grief use it up?
You'll still grieve. Anticipatory grief doesn't replace the grief that comes after death — it's a different grief entirely. Many people are surprised by how much sadness surfaces after the passing, even when they've been mourning pieces of the person for years. Both griefs are real, and both need space.
Is anticipatory grief the same as depression?
They can look similar, but they're not the same. Anticipatory grief is a response to real, ongoing loss — you're not sad for no reason, you're actively mourning. That said, prolonged anticipatory grief can turn into depression if it's not acknowledged and supported. If you're struggling to sleep, work, or find any moments of relief at all, a therapist can help you figure out which one you're carrying.
The Kansas City Caregiver Guide is a local, family-built resource for KC-area families navigating elder care. We are not a national directory. We are your neighbors.