Dear Vanessa,
My sisters and I have been caring for our father who has dementia. We all love him deeply, but lately it feels like we’re constantly arguing—about routines, doctors, little decisions. I’ve also noticed the same thing with some professionals we’ve hired. Everyone thinks their way is the “right” way. I’m wondering... how do we move past this? How do we really center what’s best for my dad?
Carmen
Dear Carmen,
Thank you for your brave and heartfelt question. Your honesty reflects something I’ve seen play out time and time again in caregiving, something we rarely name out loud: EGO.
After spending half my life in this field, walking alongside families and caregivers through some of life’s most tender, painful, and beautiful moments, I’ve learned one truth that never fades. It’s not expertise that makes someone a good caregiver. It’s not how many years you’ve worked in the field, or how many books you’ve read. It’s the ability to soften. To remain open. To set your ego aside, even when it’s hard.
Ego doesn’t always show up wearing a crown. Sometimes it wears the face of love. It sounds like, “I know what’s best,” or “He wouldn’t want that.” It looks like two sisters fighting over a medication schedule because both are terrified of losing the father they once knew. Ego clings—not because it is cruel, but because it is afraid. It tries to protect. But in doing so, it can push away the very people trying to help.
In dementia care especially, ego must take a back seat. The person we’re caring for is changing. Their likes, dislikes, and needs evolve, sometimes quickly, sometimes overnight. And yet, I’ve heard so many family members say, “But my mom hated that,” or “He would never wear that kind of clothing.” And maybe that’s true—maybe that was true. But dementia reshapes the brain, the body, the self. What was once true may no longer be. And when we care from memory instead of presence, we risk overlooking the person in front of us.
For professionals like myself, ego can be just as dangerous. We sometimes hide behind our titles, our years of training, our experience. We think we’ve seen it all. But I’ve learned, and sometimes relearned, the hard way that no degree can replace the intuition of a daughter who has sat by her father’s side for hours, who notices the tiniest shifts, who senses discomfort long before a nurse might chart it. If we don’t listen to those voices, we miss vital parts of the story.
You see, ego isn’t always loud. Sometimes, it’s the quiet voice that says, “I don’t need help.” Or “I can’t let go.” Or “They’re wrong and I’m right.” And caregiving, true, soul-centered caregiving, asks us to do something radical. It asks us to let go of being right, in order to be real. To listen. To adapt. To make space for others, even when it’s uncomfortable.
As we imagine a more dementia-friendly society, we often talk about resources, policies, and community programs. But we cannot forget that the foundation of that vision starts here, in moments like these, with people willing to do the inner work. To pause. To ask, “Is this decision really about what’s best for my loved one? Or is it about my fear, my pride, my need to control?”
Carmen, the fact that you’re choosing to reflect instead of react, that you’re asking how to center your father’s well-being despite the noise, is the beginning of something beautiful. The best care doesn’t come from being perfect. It comes from being present. From being brave enough to admit, “Maybe I don’t know everything.” And generous enough to say, “Let’s figure it out together.”
Warmly, Vanessa
