What We’re Saying to Each Other Before the Words Are Gone

Shasta Nelson is a keynote speaker, author, and leading expert on friendship and human connection. Married to her husband Greg for over 20 years, she is now navigating the early stages of his Alzheimer’s diagnosis as his primary caregiver.

When my husband Greg was diagnosed with early-stage Alzheimer’s on Valentine’s Day, I braced myself for heartbreak. And there has been plenty of that. But what I didn’t expect — what no one told me to look for — was how profoundly this diagnosis would deepen our conversations.

One of the reasons I’m so grateful Greg was willing to pursue testing early is that we’re still in a window where his memory is strong and his personality fully intact. That gift — the gift of time — has allowed us to talk. Really talk. About death. About what might be coming. About how we want to walk through it together.

We’ve always valued meaningful conversation in our 20+ years of marriage, but nothing quite prepares you for the intimacy that arises when one of you has a degenerative brain disease. In a strange and sacred way, this diagnosis cracked us open.

We’ve read books together about other couples’ Alzheimer’s journeys, and paused to ask each other: What would we do in that situation? Would you want me to say that? Do that? How should we approach it differently? These aren’t theoretical musings anymore. They’re blueprints.

We’ve had big, raw conversations with friends and family — ones where we cried and laughed and received people’s well-intended (and sometimes awkward) attempts at comfort. And afterward, we processed. What helped? What didn’t? What do we want to ask for next time?

We’ve read support group threads online. Honestly, they’re overwhelming. People share devastating stories: how their partner no longer recognizes them, how hard the bathroom routines have become, how exhausted and invisible they feel. These glimpses into the future are jarring. But they also offer something else: a chance for me to be seen for what I may one day go through. Greg has read some of the stories and basically apologized for possible future behavior. For things he might say or do one day that he would never choose to say now. “I’m sorry for who I might become,” he told me once, eyes filling with tears. Of course, there’s nothing he needs to apologize for. But it’s strangely comforting to me, his future caregiver, to know that even if he won’t be able to thank me later or express regret, he would if he could. And in a way, he already has.

These conversations don’t make the grief disappear. But they allow us to face it together. I don’t feel alone. And I think that’s one of the most sacred opportunities of early-stage Alzheimer’s: the chance to say things now that may not be sayable later.

Another thing that’s helped me tremendously is journaling, especially writing to my future self. I sat down a few weeks after Greg’s diagnosis and penned a letter to the woman I’ll become. The one who will wake up each day with more responsibility, more fear, and, hopefully, more grace.

I reminded her how deeply Greg loves her.

I reminded her that taking care of herself is not selfish — it’s essential. Greg wouldn’t want her to martyr herself or burn out trying to do it all.

I reminded her that she made a quiet deal with the universe: “If I have to walk through hell, may I at least become a softer, kinder, more loving person on the other side.”

Because the truth is, I know this will get harder. Everyone who’s walked this road before says, “It’s harder than you can imagine.” So I believe them. But I also want to believe something else: that I can go through this in a way that brings out the best in me. That I can show up for Greg with tenderness and patience, even when things are painful and messy. That I can let this season shape me — not just scar me.

Early caregiving may not look dramatic from the outside. We’re not dealing with wandering or incontinence or middle-of-the-night confusion. Not yet. Right now, we’re just two people walking around holding a silent, invisible grief. And yet, the weight of that grief can be heavy.

So if you’re in this early stage too — if you’ve just gotten the news and don’t quite know what to do next — I want to offer this: talk.

Say the things.

Ask the hard questions.

Write your future self a love letter.

Cry together.

Let this diagnosis bring you closer, not drive you apart.

Because right now, you still can.

And someday, when the conversations fade, I think we’ll be so grateful we had them.