A daughter tells us she sits in the parking lots and cries after visiting her mother at the nursing home.

I don’t know what to say.

A woman tells us that she is afraid of her husband. He has dementia. Sometimes he gets confused and thinks she’s an intruder. She worries he will attack her.

I don’t know what to say.

A mother says she doesn’t have enough energy to care for her teenage kids as well as her own mother who lives with Alzheimer’s.

I don’t know what to say.

Someone who has been recently diagnosed with Alzheimer’s tells us he went to a counselor who told him that “motivation” would be the key to beating this disease.

I don’t know what to say.

And that’s okay. Sometimes there are no “right” words. There is no advice to be given. Sometimes it’s enough to be there.

To listen.

Many of us are people of action. We want to fix. Dementia isn’t fixable.

We didn’t cause it. And we can’t fix it.

But there are these small victories along the way.

A man tells us that his wife who lives with dementia has discovered that she really enjoys painting. He buys her supplies, and she’s engaged all day.

I smile.

A son says that his mother no longer remembers who he is but rather thinks he is an old friend who’s driven across the country just to visit her. She gets excited when he walks in, and they have great visits.

I smile.

Someone mentions that they put up a sign in their house that directs their grandmother to the bathroom. She’s having fewer accidents.

I smile.

My smile doesn’t change anything, but I share in their celebration. I love celebrating those small wins with people.

That’s what it’s about. Being there for the bad stuff. Celebrating the good stuff–no matter how small or inconsequential it might be to the rest of the world.

I think about what my team and I do, and it’s a lot (because my team is amazing and ambitious). Dementia simulations. Dementia Friends trainings. Making businesses and organizations dementia friendly. Having resource tables at community events. Creating folders for healthcare providers to give to patients living with dementia and their families. Hosting a weekly support group.

But, in a way, we’ve never changed anything. We’ve never cured dementia in a single person. We’ve never prevented anyone from having dementia. Caregivers still experience stress and depression. They still struggle. They still burnout.

We’ve been ineffective in changing any of that.

And, if I can say this, we are good at what we do.

But what is that we do?

Sometimes we don’t know what to say, and we listen. We smile with people when they get a win.

We really don’t change anything. But we are there.

That’s the thing. Dementia is hard.

But you don’t have to be alone in this.