What I’ve Learned as a Dementia Care Partner
When I first stepped into the role of care partner, I had no idea how much it would stretch me—emotionally, mentally, and spiritually. Like many others, I came in with love, good intentions, and a deep desire to “do the right thing.” But what I’ve learned—what dementia has taught me—is that being a care partner requires something even deeper than love. It requires surrender.
The hardest lesson?
We have to let go of expectations.
We have to let go of who the person used to be, the unresolved issues we hoped to fix, and the desire to be understood in the way we used to be. Dementia changes the rules, and if we don’t change with it, everyone suffers.
In the beginning, I would ask myself: “Is this them or the dementia?”
But over time, I’ve realized the answer is almost always: it’s the dementia.
It’s the dementia that makes them forget your birthday.
It’s the dementia that causes them to lash out.
It’s the dementia that makes them unable to recognize your efforts—or even your face.
Their brain is damaged. Full stop.
Impulse control, reasoning, empathy—those parts of the brain no longer function the way they used to. That means we can’t hold them accountable in the way we would someone who is fully able. It’s not fair to them, and it only leads to heartbreak for us.
We can’t expect anything from them.
And that’s the hardest part. Because we do want something. We want appreciation. We want acknowledgment. We want connection and reciprocity. But for most people living with dementia, that’s no longer something they can give consistently—or at all.
So what do we do?
We become the source of all those things.
We become the patience, the understanding, the reason, and the forgiveness.
It’s an enormous responsibility, and it doesn’t always feel fair.
Because when something goes wrong, we are the ones who have to take responsibility.
We are the ones who have to adjust, to change, to try again.
And that? That is an uphill battle.
But I’ve also learned something else: we are not alone.
With love, support, and compassion—from others who understand this journey—we can do it.
We can find moments of joy, moments of connection, and moments of peace.
We can reframe success, celebrate the small wins, and hold space for the grief and the grace.
Being a dementia care partner isn’t about fixing—it’s about being present.
It’s not about control—it’s about connection.
And it’s not about what we’ve lost—it’s about what we can still give and receive, even in new and unfamiliar ways.
If you’re on this path, know this:
You’re doing an incredible job—even on the days it doesn’t feel like it.
Keep going. You’re not alone.
Looking for support or resources?
We invite you to join our monthly virtual support group, held on the first Wednesday of every month at 6 PM.
You can sign up at https://dementiafamilysupport.org/education/
Let’s keep lifting each other up. One step at a time.
