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 dementia changed the rules.

We all know IT. Stephen King made sure of that.

His IT lurked in the shadows, waiting to jump out and terrify us when we least expected it.

But the IT that lives in our house is different.

Our IT is Lewy body dementia.

One day, you’re helping your loved one with appointments, medications, reminders, and logistics. The next, you’re helping with personal care—bathing, dressing, toileting, grooming. Tasks that are deeply private. Tasks that many of us never imagined doing for someone we love.

It’s most important getting the right diagnosis as it helps caregivers know what to expect—and how best to support their loved one.

It feels like I’m pushing uphill, against a wall that’s too heavy to move, every single day. And I’m not alone. I hear it from other caregivers, too: the care team interactions can be exhausting and, more often than not, feel like a fight.

This big, lovable goofball burst into our lives with energy, curiosity, and a stubborn streak that rivals mine. I’ll be honest - my heart wasn’t ready.

Maneuvering that all-too-familiar pause between “real life” and “hospital life”

That breath of air comes when I’m in my garden; my hands in the dirt, the sun on my face, watching life quietly unfurl itself. It doesn’t erase the caregiving journey I’m walking — it simply gives me a moment to breathe on my own.

When you’re dealing with a serious, ongoing, or life-limiting health issue, you don’t need someone who’s just checking boxes or following a flowchart. You need someone who gets you — the real you — not just the patient sitting in front of them.

I know people mean well when they say it. They're trying to offer comfort, trying to wrap a hard situation in something that sounds like strength and hope.

It’s hard to believe how much life can shift in less than two years.

Coping mechanisms get a bad rap sometimes. They’re treated like fallback plans—those things we turn to when everything else has fallen apart.

Understanding people with chronic disease

Clarice slides in with big feet and a big heart

For additional information on caregiving, CareGiver.com is a great resource.