No Place I Would Rather Be

By Gregg Fous

Otter Cottage sits on the Nottley River in a bend where the water speeds and the trees open up. When the sun is right over the upper part of the river it looks like cascading diamonds flowing toward our home. Gail and I found it years ago and never left. We have a handful of neighbors close enough to matter, a river room where the light comes through the windows in the morning, and just lately, a bin of new chicks in the corner that has become the latest excuse to invite someone over for drinks. Like I need an excuse.

Herb and Becky came over a few evenings ago. This is a regular thing when I can manage it, two or three times a week: cocktails and conversation at our house. The river room is new to the routine, the chicks newer still, rustling around in their bin doing whatever chicks do. I had been working on getting Gail dressed every day lately, a small thing that matters more than it sounds, and that evening she was dressed and present and the four of us were sitting together talking about nothing important. Which is the best kind of talking.

About twenty minutes in, Gail got up.

I assumed she went to the bathroom. The conversation kept going. A few minutes passed. I asked Becky where Gail had gone.

“I don’t know,” she said. “I think the bathroom?”

I went upstairs to find her.

She was standing in the bedroom with the look. Caregivers know the look. It is not fear, exactly. It is the absence of the thread that connects where you are to where you were. She was not hiding anything. She never tries to hide it anymore. She had simply forgotten that we were downstairs. Forgotten Herb and Becky. Forgotten the chicks. Forgotten the drinks in our hands and the afternoon light and all of it.

“Come on,” I said, taking her hand. “Let’s go back downstairs.”

She came. We were fine.

What I had forgotten was the Post-it note. Mostly because she was with me.

Every time I leave a room, I put a whiteboard note on her nightstand or at the foot of the bed. It tells her exactly where I am. When I go to the river room, there is a Post-it note on the door. Gregg is in the river room. Simple. It works.

That evening I had not done it. I had guests and chicks and the easy feeling of a normal evening, and I forgot.

The anxiety I felt walking upstairs is what this article is about.

Let me describe something, and hold it for a moment before I name it.

You are a young mother. Your daughter is five or six years old, full of opinions and no sense of danger. You are in an airport. You need to use the restroom. She goes in ahead of you, or you go in and she waits, and for ninety seconds she is out of your direct line of sight.

You know she is fine. You are fifteen feet away. Nothing is going to happen.

But something happens to you anyway. Something in your chest. A low hum of not-quite-right that does not respond to logic, because logic is not what is driving it. You are monitoring a signal you cannot turn off. The moment she is back in sight, it stops.

That is what I feel when I am not with Gail.

Not every minute. Not when I know exactly where she is and she is safe and settled. But when she is out of my sight and I am not certain, the signal starts. It does not respond to reason. It does not care that she is home in her own bed or that a neighbor is with her or that the Ring camera shows her sleeping peacefully. The hum is still there. The thread between us feels too thin for comfort.

I mentioned this to a friend. His wife is in a more advanced stage than Gail. She no longer communicates. He has caregivers now, which helps, but he told me without hesitation: I know exactly what you mean. He did not need me to explain it. He had been living it longer than I had.

One thing I want to say plainly: comparing a spouse with dementia to a child is not accurate, and it is not what I mean.

Gail is not a child. She is a woman of depth and grace, and in her lucid moments, which still come, she is completely herself. This morning she and I had a conversation about what it feels like when I am away from her. I told her: even when I leave the room, I get anxious. Even when someone else is with you. She listened. She understood. She did not remember it two minutes later, but in the moment, she understood.

What I wanted her to understand that morning was this: the anxiety runs both ways.

Her anxiety is not about missing me. It is about losing the thread. When I am not with her, she loses the narrative of where we have been, where we are, where we are going next. I am the story she lives inside. When I leave the room, the story goes with me.

My anxiety is the mirror image. I am not just worried about her safety. I am worried about causing that feeling in her. The not-knowing. The look. I leave a room and somewhere in the back of my mind I am already calculating: does she know where I am? Does she have what she needs to stay calm until I come back?

Two people. Two different kinds of anxious. Same separation.

When I told her that, she relaxed a little. Maybe it helped to know she was not carrying it alone. I know it helped me to say it out loud.

What I am describing is not a parent-child relationship. It is a guardian-and-charge dynamic that caregivers develop not by choice but by necessity. The person you love most in the world becomes someone you can never fully stop monitoring, because the cost of not monitoring has become real. You have seen the look. You know what the look means. Your nervous system has learned to scan for it whether you tell it to or not.

There is a specific kind of loneliness in this that I do not think gets talked about enough.

People who care about me want me to rest. My daughter and her husband want me to leave Gail for a while, go have a beer, watch a football game, take a break. I love them for wanting that. But what they do not fully understand yet is that it does not matter who is with Gail when I am not there. I am not just missing her. I am monitoring a frequency they cannot hear. I am waiting for a signal I cannot ignore.

The truth is, when I want a break, I take it in the chair next to Gail’s bed while she rests. I read quietly, or I just sit there with her. I do not need to go anywhere. Otter Cottage is our world, and I have made my peace with that. The river room and the chicks and Herb and Becky a few times a week. That is enough. That is, most days, more than enough. I tell Gail this over and over: there is no place I would rather be, and no person I would rather be with, than right here with you, right now. And I mean it.

Anxiety does not take days off. And for caregivers reading this who feel the same way, I want to say plainly: you are not being irrational. You are not being overprotective. You are not failing to practice self-care or set healthy boundaries or any of the other things the wellness industry tells caregivers they should be doing.

You are doing what every person does when they love someone who cannot fully protect themselves. You are staying on. You are keeping watch.

The evening with Herb and Becky ended well. We went back downstairs, all four of us, and sat with the chicks until the light was gone. Gail was present and comfortable and herself. She laughed at something Herb said, and I watched her laugh, and for that hour everything was fine.

The Post-it note is back on the door now.

I will not forget it again.

Gregg