The “Long Hello” of Dementia
Learning new ways to know someone you’ve always known - again and again
Theme: The Beauty
Quick Take:
It was never perfect - and it turns out it doesn’t need to be in dementia
Love adapts
She forgets names. She doesn’t forget how to feel.
It was never perfect
My mother and I didn’t have a perfect mother-daughter relationship before dementia. I wouldn’t call her my best friend, and we are very different.
Some of her values were rooted in fear - fear of what might happen, fear of what people might think - and I often didn’t share her way of seeing the world. It created distance between us and sometimes made things difficult.
But alongside that, there was something constant: she loved me, deeply and in her own way. Even when we didn’t understand each other, that love was always there.
And I think that matters now.
What matters now
Milly’s love for me helps us every day. And whilst dementia has taken certain things away, it has also softened some of those edges. The fear that once influenced so much of how she responded to life doesn’t show up in the same way. Life is simpler. She is more open.
For me, that has made it easier to step forward and care for her without carrying quite as much of the past.
There’s less need to agree. Less need to resolve old differences. More space to accept what is in front of me now.
It most definitely isn’t perfect, and it doesn’t erase what came before. But it is real. And it is enough.
“I’ve already lost them”
People often say, “It’s like I’ve already lost them.” Adverts highlight this feeling.
I understand why people say it. I really do. Dementia changes a person. Conversations shift. Memories disappear. Familiar roles fade. There is grief in that, and it’s real.
But I want to say this gently, because this is only my story:
Milly is not gone.
Milly is still here.
Milly is still present
She hardly remembers my birthday but she always remembers her mother’s. She can hardly remember her grandchildren, let alone her great-grandchildren. She is overwhelmed by personal care. She often says she wants to go back to her home and asks why she needs to keep living with us.
She insists she is independent and could manage alone, yet she needs full support with most daily tasks. Eating and drinking and walking all need gentle reminders and encouragement.
And yet - she is still present.
Milly is still present in the way she feels things, in the way she responds, in the small moments between us every single day.
Our relationship has changed. Of course it has. It had to.
I can’t expect the same conversations, the same awareness, or the same independence. If I hold on to what used to be, I will feel like I’m losing her over and over again.
So instead, I adjusted.
I meet her where she is now, not where she used to be.
And in doing that, something important happened and continues to happen. Our relationship doesn’t end. It keeps evolving.
The things we still share
We still share warmth. We still share comfort. We always share laughter. There are still moments of closeness that are very real, even if they look different from before.
When people say someone with dementia is “already gone,” I think what they often mean is that they don’t yet know how to reach them in the way they used to.
But that’s not the same thing as them not being there.
A note on my perspective
I try always to hold in mind when I write this blog that I’m in a particular position - caring for my mother in a relationship that is, in many ways, more naturally defined. Dementia must feel very different for younger people, or for those caring for partners, where the relationship and future together are so different.
I am also aware that Milly is at a different stage of dementia from many people. She still masks remarkably well and there are hours, sometimes even whole days, when she feels almost like her old self.
Social interactions take a great deal out of her, and I see a very different Milly when she is tired or overwhelmed. I try to build plenty of rest into her days because without it she becomes more confused and less herself. She now spends around sixteen to eighteen hours out of every twenty-four asleep or dozing in bed.
Early days
The way I respond to dementia matters. If I approach it through loss, I close myself off. I become impatient or sad in ways that don’t help either of us.
But when I adapt - my expectations, my communication - our connection doesn’t disappear. It changes shape.
There are hard days. Very hard days. And I can feel deeply sad.
But there are also moments of lightness I didn’t expect.
Lately, Milly often says she is a spy - that she may look old or confused, but it is all part of her disguise. We laugh a lot. She’ll try to explain why she can’t do something, or where she is, and then conclude she is “putting them off the scent.”
And in those moments, she is right.
Yep. She is still here.