The post I wrote earlier today was not the one I planned on writing. This one isn’t either. But I need a place to park things, and at times this is the place. It is easier than trying to write in my journal with a flashlight.

Jack is already in bed. He is sensitive to light now. He wakes up at sunrise and goes to bed as soon as it gets dark. His average bedtime is between seven thirty and eight.

I don’t like going to bed this early. But if I don’t go to bed with him, I have to wake him up later so I can get in. Waking up someone with dementia, I’ve learned, is a dicey thing. He is just as apt to wake up fighting as he is to welcome me into the blankets. So I go to bed when he does. It is easier that way.

That doesn’t mean I go to sleep, however. I am more apt to watch YouTube or check out a few Facebook posts until I start dozing off. Some nights, however, my brain doesn’t shut off, and the only way to settle it is to write what’s inside it. Tonight is one of those nights.

During the day I can push certain thoughts away. My days don’t allow much time for thinking, which is often a good thing. At night, however, when things are still and Jack is sleeping, my brain wakes up. All the thoughts I’ve tucked away come out for an evening stroll. This is not what I want when I’m trying to go to sleep.

Tonight my brain is pondering things that have no answer. Like, why did this happen? We came all the way across the country to start over, to build a new and better life. We dreamed of everything we would have and do. We had long conversations about our future, what we wanted it to look like. Why did it go so wrong, just when we were starting to turn our lives around?

Dementia wasn’t supposed to be a part of our lives, especially not after we’d learned to be husband and wife. We went through a lot of learning to become partners. A team. We decided things together; we planned our future together; we dreamed together. We learned through the hard times what really mattered—each other. By the time we left CT, we were partners and soulmates, ready to start over together.

We thought we would have many years together. We thought we would rebuild and go on to do greater things. And we were getting there. We had a new place to live, awesome jobs, and our own (admittedly small) home. We were building ties in the community. We were free of the financial stresses that had plagued us for so long. For the first time in our marriage, things were going well.

And then they fell apart again. Jack was diagnosed with Frontotemporal Dementia. We left the doctor’s office that day, determined not to let this thing wreck our future. How innocent we both were.

So now I sit here, wrestling with a why that will stay unanswered. My rage and sadness at the unfairness of it all won’t change what has happened—I must learn to make my peace with that. And I will. But it comes slowly. And on nights like this, as I sit in bed, listening to Jack breathe beside me, the enormity of what we have lost comes out to have its say. And all I can do is let it speak.