Field Notes

You Keep Finishing Her Sentences

You snapped at your spouse last week over nothing, and you sat in the car afterward, trying to figure out what just happened. Not the snapping part. The part where you couldn’t shake it for the rest of the night.

If you’re caring for a parent or a spouse with dementia, you’ve probably had a version of that night. Maybe it’s the kitchen, or the bathroom with the water running so nobody hears you, or just a long pause of staring at nothing before you go back in the room and act like everything is fine.

Nobody warns you about that part. The neurologist talks about the disease. The pamphlet in the waiting room talks about stages and symptoms. Nobody sits you down and says, by the way, this is also going to happen to you.

Here’s what I mean, and I want to be specific. You are starting to finish her sentences. Not because you’re impatient, but because watching her search for the word is hard to sit through. Jumping in and helping her feels like help. It’s faster. It moves things along.

You took over the checkbook after one mistake. One mistake. It made sense at the time, there was an error, there could be more, and the stakes are too high to risk it. So you just quietly took it over and didn’t make a thing of it.

You stopped asking what he wants for dinner, because that conversation takes up so much time and usually just ends in frustration anyway. Easier to just decide. He eats what you make. Seems fine with it.

Mace and Rabins, who wrote The 36-Hour Day, put their finger on something similar years ago. They were writing about bathing and dressing, the moment a caregiver starts helping with something a person has done for themselves their whole life, alone, in private, since they were a child. When you step in to help with that, they point out, you are saying something bigger than you mean to. You are telling the person they can no longer do the thing everyone does for themselves. The checkbook is that. Dinner is that. Finishing her sentence is that.

Every one of those choices made sense in the moment. Every one came from love, or exhaustion, or both, usually both. And I want to tell you something that took me a long time in this field to really sit with: every one of them also took something from your parent that they don’t get back.

Tom Kitwood, who spent his career studying dementia, called this the involutionary spiral. Every time someone with dementia is denied the chance to act, decide, or struggle toward a word, they lose a little more of their ability to hold onto who they are. And once that capacity shrinks, it gets easier for the people around them to step in further. Which shrinks it more. There’s no floor to it. It doesn’t stop on its own.

Kitwood was careful about something, and I think it carries a lot of weight. The people driving this spiral aren’t cruel. They’re not neglectful. In families, they’re almost always the ones who show up every single day, who rearrange their whole life around someone they love. This isn’t coming from indifference. It’s coming from instinct, the instinct to fix, to smooth, to spare somebody pain.

That instinct, left unchecked, is still costing your parent something real. Piece by piece, in moments that each looked exactly like love.

You probably already feel some version of this. Guilty for being angry, then angry at yourself for feeling guilty. Wondering if you’re doing enough, then wondering if you’re doing too much. Grieving the parent you used to have while you’re still very much taking care of the one in front of you. Those things don’t cancel each other out. They just sit there together, all the time.

I want to be clear. I’m not saying to let things crash. I’m not saying to let her struggle. I’m saying there’s a difference between the struggle that takes away dignity and the struggle that preserves it. Most families don’t know the difference. When do you step in, and when should you wait just a few more seconds? Sometimes, asking what he wants for dinner is worth it, even if it takes him a while to answer. Why? Because being asked the question tells him his preferences still matter.

I won’t pretend that’s easy when you’re already running on fumes. But the relationship around a person with dementia genuinely shapes how the disease unfolds. That’s not always a comfortable thing to hear. It’s also one of the only places you actually have some power in all this.

This is the work I do. Acadiana Dementia Navigator exists for the person sitting in the car in the driveway. For the adult child holding it together and quietly coming apart at the same time. For the spouse grieving someone who is still right there in the room.

I help families understand what is actually happening and why, and how to move through it without losing themselves in the process. Not clinical care. Not a hotline. Just someone who has spent a long time in this world and knows the terrain, walking it with you.

If you’re in Acadiana and any of this sounds familiar, reach out. The path forward is there. It helps to have someone who can show you where it is.

Why I Started This

About four years ago I was jogging with a friend in Hattiesburg. I was in a transitional period of my life, the kind where you have a lot of time to think and not much certainty about what comes next. My friend was a few months removed from the hardest thing he’d ever been through, and he was telling me about the ripple effects, specifically about what it did to his family.

His daughter was struggling. Other family members too. They were trying to navigate a crisis they hadn’t been trained for and didn’t have a map to. So they hired someone. Not a therapist, not a case manager, but a consultant, an advocate, someone who knew the terrain and could walk through it with them. He said it worked. That this person changed the trajectory of what might have happened. He was still grateful for it.

He was telling me this because I was fretting about how I was going to support my family. The idea seemed interesting, but I couldn’t see it for myself. Not then. There were too many things still unresolved, and I was probably more optimistic about how quickly those things would sort themselves out than the facts warranted. I was wrong about that. But the idea didn’t leave.

It just sat there, and over the next few years it started attaching itself to something more specific. Not mental health navigation in the general sense. Dementia. Informal caregivers. Families in Acadiana trying to manage a constant crisis cycle without anyone in their corner who actually understood what they were dealing with.

I had spent more than a decade in psychiatric and geriatric care before any of this. Mostly working alongside families navigating dementia with behavioral complications, watching what happened when families were left to figure things out on their own, and watching what happened when they weren’t. The difference was not subtle. The families who had someone in their corner, someone who could explain what was happening and why, who could help them understand their options and think through decisions before a crisis forced one, those families fared differently. Not because the disease progressed differently. Because they did.

There is no one in Lafayette doing this work the way it needs to be done. Not for informal caregivers, not in a sustained and structured way, not grounded in any real understanding of what dementia actually is and what it does to the people around the person who has it. That gap has been there for a long time. I kept waiting for someone to fill it.

About six months ago it became clear that person was going to be me.

My name is Mark deClouet. I spent more than a decade working alongside families navigating dementia and serious mental illness, and I hold a Certified Dementia Practitioner credential. Acadiana Dementia Navigator is the practice I built for this specific gap, the one I recognized on that jogging trail in Hattiesburg and couldn’t stop thinking about.

The work I do is caregiver education and navigation. I help families understand what is actually happening and how to move through it without losing themselves in the process. It’s not clinical care. It’s not a hotline. I’m just someone who knows this terrain and is willing to walk it with you.

I need to call that friend in Hattiesburg and tell him where this landed. That conversation was the beginning of it. Neither of us knew that at the time.