Mourning The Loss

There are things we used to do.

Little things. Big things. Ordinary, everyday things that didn’t feel special at the time—until they quietly slipped away.

We used to have long conversations that bounced effortlessly from topic to topic. We used to make spontaneous plans. We used to share inside jokes that didn’t need explaining. Quoting movies was our “thang” which often garnered strange looks from people. Hey, we get it! We used to argue about totally stupid sh!t (and then laugh about it later). We used to walk side by side, both of us fully present in the same moment.

At first, I didn’t realize they were disappearing. They didn’t leave all at once or with any kind of announcement. They slipped away quietly—one canceled plan here, one shortened conversation there. What used to feel like a temporary adjustment slowly became our new normal.

These weren’t just activities or routines. They were pieces of a shared life. Trips we assumed we’d always take, like Hawaii every few years. Dinners we didn’t think twice about. Conversations that flowed easily, without effort or confusion. They were the moments that stitched our relationship together in ways I never thought to name - then Lewy entered out life.

We used to enjoy swimming, anywhere and whenever we had opportunity. Laps in the evenings in CA. Suddenly everything no longer “clicked”. He totally got “lost” under water in the pool in Hawaii and panicked (as did I).

LBD brain does some crazy things …

When LBD entered our lives, it didn’t arrive with a single defining moment. There was no clear line between before and after. Instead, it crept in gradually, changing the rhythm of our days and the way we moved through the world together. What once felt familiar began to feel uncertain. What once felt easy began to require planning, patience, and grace.

And somewhere along the way, I realized I was grieving.

“Crying is the way your eyes speak when your mouth can’t explain how broken your heart is.”

(Japanese saying, author unknown)

What We Used To Be

Not in the way people expect. Not loudly. Not all at once. But in small, steady waves—mourning the loss of the things we used to do, the life we assumed we were building, and the version of our relationship that existed before dementia reshaped it.

This kind of grief is complicated. It lives alongside love. It shows up even on good days. And it often goes unnamed—especially for caregivers, who are expected to be strong, adaptable, and endlessly patient.

But it’s real. And it deserves space.

Not the dramatic kind. Not the kind that arrives with a single event or diagnosis date circled on a calendar. This grief comes quietly, in moments of realization, when you understand that some things are no longer just difficult … they’re no longer possible.

It’s the moment you stop suggesting a trip because you already know the answer or having to gently say “no” because you know you’re not up to the challenge (that’s both of us). The moment you choose the quieter restaurant without discussion. The moment you realize you’re adjusting your expectations before you even say them out loud.

That recognition hurts.

Life Has Evolved

Our relationship is different now. Not worse. Not better. Just … different.

Conversations look different. They’re shorter. Simpler. Sometimes repetitive. Sometimes surprising. Sometimes tender in ways they never were before. There’s less back-and-forth and more listening. Less explaining and more reassuring.

We don’t plan far ahead anymore. We live closer to the moment. Today matters. This hour matters. This smile matters. And somehow, that has softened the edges of life.

There’s humor too—because if you don’t laugh, you’ll cry, and sometimes you do both at the same time. We laugh at the unexpected comments, the sudden observations, the moments that make absolutely no sense but somehow feel perfectly right.

I miss the things we used to do. I miss the person he used to be. I miss the version of “us” that existed before Lewy changed the rules.

Because it’s not just about activities we can’t do anymore. It’s about acknowledging that the life we once moved through carefree and enthusiastically has changed. Permanently. It’s about letting go of the idea “maybe next time”.

This grief is layered. It’s grief for the experiences we imagined we’d share. Grief for the ease we once took for granted. Grief for the partnership that allowed us to face the world together without calculating energy levels, noise, confusion, or recovery time.

And there’s guilt woven into it too. The guilt for missing those things while still loving the person in front of you. Guilt for mourning what’s gone while trying to be grateful for what remains.

As caregivers, we don’t always give ourselves permission to name this grief. Honestly, if I give it a name, I’m giving it a life that I know I can’t “control”.

We tell ourselves we should be strong. Flexible. Understanding. We remind ourselves that it could be worse. And all of that may be true, but it doesn’t erase the loss.

Recognition is the turning point.

Recognition is when you stop fighting reality and start grieving it. It’s when you acknowledge that adjustments to life aren’t temporary, they are a permanent part of life now. And while that acceptance can eventually bring a kind of peace, it also brings sadness.

Because every recognition is also a bit of a “fare thee well”, small goodbye.

And yet, our love remains. It doesn’t cancel the grief at all, but finds a little place to tuck it in and just “be”.

Recognizing grief teaches us how to hold both the mourning for what we’ve lost and the tenderness for what still is.

That is the quiet work of caregiving.

I love the version of us that exists now.

The love didn’t disappear when the routines changed. It just learned new ways to show up. In patience. In presence. In holding hands instead of holding conversations. In shared silence that doesn’t need fixing.

LBD has taken a lot from our life. There’s no denying that. But it hasn’t taken the heart of our relationship. It’s just asked us to rewrite it, one day at a time.

So yes, we don’t do the things we used to do.

But we’re still here. Still connected. Still loving. Still finding our way—together.

Feeling Grief is human

It doesn’t mean we’re ungrateful, impatient, or not loving enough. It means we are human—walking through ongoing loss while still showing up every day. The grief we carry as caregivers is real, even when it’s quiet, even when no one else sees it.

There will be days when the sadness feels heavier than the adaptation. Days when the recognition of what we can’t do anymore hits harder than expected. When that happens, know this: you are not weak for feeling it. You are not alone in it.

Grief was never meant to be carried in isolation.

Support can look many different ways. It might be a caregiver support group—online or in person—where you don’t have to explain yourself. It might be a counselor who understands ambiguous loss. It might be a trusted friend who listens without trying to fix things. Sometimes, it’s simply reading the words of someone who gets it and realizing, me too.

Don’t Shoulder The Burden Alone

If you’re carrying this quietly, I hope you’ll reach out. Find a space where your grief is allowed to exist alongside your love; because both deserve room.

We may not do the things we used to do anymore.

But we are still worthy of support, understanding, and compassion—every step of the way.