You Lose Them Twice: Anticipatory Grief, Dementia, and the Caregiver No One Asks About

My dad is Coach Gerke. Not was. Is.

Basketball coach. History teacher. Life of the party, quick with a joke, and the kind of disciplinarian you did not negotiate with. When I was a teenager and asked to stay out later, the deal only moved one direction. I’d ask for 10:30. He’d say 9. That was my dad.

He treated his four kids fairly, never equally, because he understood we were all different. He taught me to speak up when something was right, and when something was wrong. What he stands for became my governor. I still hear it.

Here’s the part almost nobody knew about him. Every year, he taught his high school seniors a class on death and dying. He became a hospice volunteer. Long before I ever taught any of this, my father was already teaching people how to face loss.

And then dementia came for him. The man who taught teenagers how to meet death began to lose his own story, one piece at a time.

You lose them twice

Here is what no one prepares you for. With dementia, you lose someone twice. Once at the diagnosis. Once at the death. And the years in between are their own kind of grief—the kind most people have no language for.

You are mourning someone who has not died. You are grieving in advance, and in public, while everyone around you carries on as if nothing has happened, because technically, no one is gone.

There’s a name for the grief that arrives before the loss does: anticipatory grief. The grief before the grief. It’s real, even though the person is still here. It’s real, even though there is nothing yet to bury.

The grief the world doesn’t quite recognize

People showed up for us. They brought food. They checked in and visited. Us kids rotated, each of us taking a week of the month to stay with Mom and Dad. There was love all around us.

But almost no one had words for the grief itself. So they reached for the phrases we all reach for when we don’t know what to say:

• “At least he’s still here.”
• “If only they’d caught it sooner.”
• “He doesn’t really know what’s going on.”

Every one of them well-meaning. Every one of them landing just to the side of the real grief, and missing it.

Grief experts call this disenfranchised grief: grief the world doesn’t quite recognize, so it goes unnamed. You feel it fully. The people around you can love you and still not find the word for it. And so you learn to carry it a little alone, even in a house full of help.

The person everyone forgets to ask about

There is someone in this story who is easy to miss. The caregiver. My mother. Grieving her husband while he was still alive, holding him together and losing him in slow motion, day after day.

People asked how Dad was doing. Fewer thought to ask how she was. And when they reached for something to say to her, it was often “You’re so strong,” or “You’re so caring,” or “I can’t imagine what you’re going through.” Kind words, every one of them. But “I can’t imagine” is the tell. People can imagine. They just don’t want to. It’s easier to admire her from a safe distance than to step close to something this heavy. And so the praise quietly hands her a role to perform instead of permission to fall apart.

She is not rare. An estimated 63 million Americans are caring for a family member right now, and 6 in 10 of them are women (AARP/NAC, 2025). Most of them are carrying a grief that no one around them knows how to name.

What I learned, and what I teach now

Do not reduce a person to their diagnosis. My dad was never “a dementia patient.” He is Coach Gerke, all the way through, even when the disease was winning. See the person. Not the condition.

You don’t have to wait for a death to acknowledge a loss. When someone is caring for a person who is slipping away, know this: they are already grieving. You can name it now.

You don’t need the perfect words. You need to stop pretending nothing is happening. Try:

“I’ve been thinking about you and your dad.”  Or simply: “How are you? Not the logistics—just you.”

If you love someone in the long middle of this—or you sit across from them at work, in a meeting, in a waiting room—you are closer to helping than you think. Grief is a universal experience. It’s just not yet a universal language. So we’re building one, one honest sentence at a time.

The loss is already here. So is the person carrying it. See them both.

Learn the language of loss. Kathi helps leaders, teams, and financial professionals find the words for the moments most of us were never taught how to speak into. Download the free Grief-Ready Advisor Field Guide, or book a conversation with Kathi.