When a Parent with Dementia Forgets Your Name
The day a parent with dementia doesn't know your name is one of the hardest in the long goodbye. What one daughter learned — and how to hold on to who they are.
No one tells you about the specific afternoon.
They tell you about the diagnosis. They hand you leaflets and phone numbers and the word — dementia — said in that careful voice doctors keep for it. Nobody sits you down and says: one ordinary Tuesday, your mother will look up at you from her chair, pleased and a little shy, and ask, politely, who you are.
Mine asked if I was the woman who comes on Thursdays.
I said yes. I still don't know why I said yes — it seemed kinder than the truth, and anyway the truth had gone suddenly negotiable, the two of us standing there with my coat still on.
I want to tell you what I've learned since, though learned is far too tidy a word. It comes and goes. I understand it on the good days and mislay it on the bad ones, which is, I've come to think, its own small rude joke at my expense: the same thing happening to me, in miniature, that's happening to her.
She hasn't lost me. She's lost the word for me.
It isn't the love that goes first. It's the filing. The name, the fact, the place I hold on the family tree — daughter — that one card slides out of the drawer, and she reaches for it, and it isn't there.
But something stays. She can't say my name, and still, when I walk in, her face does something. Opens. She doesn't know I'm her daughter. She knows I'm someone good who's about to sit down with her. On the bad days I tell myself that isn't much. On the good days I know it's very nearly everything.
I stopped correcting her.
At first I couldn't help it. Mum, it's me, it's Alina. Every single time. As if, said firmly enough, the card would slot back into place. It never did. What it did was frighten her — I could see it, the flicker, the shame of a test she could feel herself failing — and then I'd have spent the whole visit taking something from her instead of bringing something.
So now I don't. Now I'm the Thursday woman, if that's who she needs me to be. And I'll be honest with you: the Thursday woman gets treated rather well. She gets the good biscuits and a proper welcome and none of the thirty years of complicated history the daughter always dragged in with her. I sit down. I let her tell me things, some of which aren't true anymore, and I let those be true too. I go home lighter than I ever did in the years I still won.
What I do now, quietly, for later
Here's the practical part. I nearly left it out, because it sounds like a project and this is the opposite of a project. But.
On the good afternoons — and there are still good afternoons — I leave the phone on the table, recording, while she talks. Nothing formal. The garden she had in the sixties. A neighbour I never met. The way bread used to be. I'm not doing it for the facts. I'm doing it for the sound of her saying them, because the thing I'm most frightened of losing isn't a date or a story. It's her voice. The exact one. The way she leans on certain words. That goes too, and no photograph holds it.
I write things down as well. The phrases only she says. How she says my name — said my name — on the days it still comes.
Somewhere to keep her
That's the plain reason I use Stella Memoria. A place to gather this — her stories, her voice, the small ordinary ones, a little at a time, kept for the family who'll want all of her and not just these last, hardest chapters. It doesn't fix anything. It won't hand her back my name. But it holds on to who she is, while there's still so much of her here to hold. And on the afternoons she asks whether I'm the Thursday woman, I have somewhere to go and be reminded that she was — is — my mother, in her own words.
Some days that is the only thing that helps. Some days it is enough.
Somewhere to keep it
Stella Memoria is a page in memory of someone you loved — their photographs, their story, and what other people remember about them, kept together in one place. You write it a little at a time, and it stays online.