She knew.
On the well-meaning words that don’t quite land — and what caregivers actually need to hear
When Lee was still able to play golf, we sometimes played with one or two other people. When his frustrations would bubble up — with his game, with the effort it took just to get through a round — he would sometimes snap at me. Sharp words. A flash of anger that wasn’t really anger, not the way it looked from the outside.
One afternoon, when this happened, the two other players exchanged a glance. Why is he yelling at her? One of them, a friend who knew about the Alzheimer’s, said quietly: That’s the disease talking.
She was right. She was also someone who had lived it — her father had Alzheimer’s, lived with her sister until he died. She had watched what the disease does. She knew.
She replayed this scene to me recently over dinner, years later. And then she said the words I’ve heard more times than I can count, offered always with the best of intentions:
I know how you feel. I’ve been there too.
I smiled. I nodded. And later, driving home, I sat with why those words — kind, generous, lovingly meant — had stayed with me in a way that didn’t quite settle.
The Research Behind the Feeling
It turns out there’s a name for what I was experiencing.
💡Studies on shared life experience show that when we’ve been through something similar to another person’s pain, we instinctively reach for our own memory of it. We access our own grief, our own struggle, our own story — and in doing so, we can inadvertently shift the focus away from the person in front of us and toward ourselves.
The research is careful to note that this isn’t selfishness. It’s human. When we hear something that echoes our own experience, our nervous system responds. We re-enter our own pain. And from inside that pain, it becomes harder — not easier — to truly hear the unique emotional landscape of the person sharing with us.
I know how you feel is an act of connection. It is also, sometimes, an act of substitution — replacing their experience with ours, however gently, however lovingly.
What She Didn’t See
My friend knew a great deal. She knew what it looks like when a dementia patient loses patience on a golf course. She knew the particular exhaustion of watching someone you love disappear in stages. She knew the way a family reorganizes itself around a diagnosis, the toll it takes, the way normal life goes on hold until it doesn’t.
But she didn’t see the tearful apology later that afternoon.
Lee, quieter by then, coming to find me. So ashamed. So heartbroken at what he’d done — at snapping at Vicki, his wife, his life partner, his best friend. He couldn’t always help it. The disease had its own weather, and sometimes it stormed. But he hated it. In his clearer moments, he hated it deeply.
She didn’t know about those moments. Nobody did, except us. And that is the point.
Every dementia patient travels their own path. And when the primary caregiver is a spouse — not a child, not a sibling, but the person who chose you, and whom you chose — that journey has a singular shape. A weight that sits differently. A grief that is tangled up with love in a way that is almost impossible to separate.
Nobody has been there too. Not in the exact same way. Not in your way.
And when someone says they have — even someone who has genuinely lived something similar — what it can do, unintentionally, is compress your experience into something smaller than it is. Summarize the unsummarizable. Fold years of complexity into a shared nod and a knowing look.
Your story deserves more than that.
What Caregivers Actually Move Through
There is no playbook for spousal caregiving. There is no sequence of stages that applies to everyone, no tidy arc from diagnosis to grief and out the other side. What there is, instead, is a relentless series of transitions — roles you move through without choosing them, losses you absorb before you’ve finished absorbing the last one.
The emotional toll can be profound. “Cleaning, comforting, taking him to appointments—it all takes time. But the disappointment is when his health keeps deteriorating,” one caregiver says. “You do your best, but the emotions are persistent. You think about losing someone you love—and how one day, they won’t be there anymore.” Spousal Caregivers Face Greater Strain—Here’s What the Data Shows
You start as a wife. A partner. A friend. The person who knows how he takes his coffee and which side of the bed is his and what makes him laugh until his eyes water.
And then, gradually, almost without noticing, you become something else. The keeper of the medication schedule. The buffer between him and a world that moves too fast. The advocate for his dignity in the rooms where decisions are made. The one who holds everything together while quietly falling apart.
And finally — when the time comes — the one who lets go.
Each of these transitions is its own grief. Each one asks something different of you. And the range and depth of emotions that live inside that journey — the anger, the guilt, the confusion, the love that never wavers even when everything else does — cannot be summarized. Cannot be contained in a shared look across a dinner table, however warm.
Loss takes many forms, and none are worse than the others. Sudden loss is its own kind of shattering — a brick wall, met without warning. Loss through Alzheimer’s is also a brick wall. Met over and over again, in smaller pieces, across years. Different, but no less devastating. No less real.
What I Want Her to Know
My friend who knew — she was not wrong to say what she said. She was reaching for me in the way she knew how, with the tools she had. And I love her for it. I love that she was there on that golf course, that she saw what was happening, that she has sat across dinner tables with me and tried to understand.
What stayed with me wasn’t anger. It was grief of a different kind — for every caregiver who has finished the journey and found that the world has moved on, largely without noticing what they carried. The strength that was tested daily. The identity that was rebuilt slowly. The person who came through it, quietly extraordinary, rarely acknowledged as such. The person who found their sense of belonging again.
Every caregiver who has walked this road has been measured. Tested. Stretched to places they didn’t know they could reach. And they survived — not because it was manageable, but because they managed it anyway. Because there was no other choice, and they made it through anyway, and that matters more than most people will ever understand.
That deserves more than I’ve been there too.
What it deserves is this: Tell me your story. I’m listening. All of it — the parts that don’t make sense, the parts that still haunt you, the parts that were also beautiful. I’m not going anywhere. Tell me.
That is what caregivers need to hear. Not that someone else has been there. But that someone is here — right now, fully present, making room for the whole complicated, unrepeatable truth of what you lived through.
Have you ever had a well-meaning comment land in a way that didn’t quite sit right? I’d love to hear about it in the comments — and what you wish had been said instead.