I find it hard to share when I’m struggling. That little voice in my head tells me it’s better to keep it to myself because no one wants to hear it. But I’ve had a really hard day today. And I haven’t said anything.

I don’t want to share. Which is why I need to. When I write, the darkness has no power. So, this post:

Christmas Day sucked this year. When I gave Jack his gifts (DVDs that he’d left in CT), he looked blank.

“What are these?” he asked. I told him they were for him. “What do you want me to do with them?”

“You can open them. They’re yours.” I answered. Jack picked a box up and shook his head.

“I don’t know how. You do it.” he said.

I cut the tape without a word and showed him the contents. He was pleased, in a blank sort of way. And that was our Christmas day.

Except for his bath. Did I mention the agoraphobia? Jack now has it because of his dementia. He will no longer leave the trailer unless I’m with him. He won’t go shopping without me, nor will he enter a store. He won’t enter stores, period. No more doctors either. And he absolutely will not go to the shower house any more, end of story. He is done, exclamation point. And that’s his final word.

So I’ve been bathing him in the trailer. And he got a Christmas bath. This was no small feat, since we don’t have a workable shower. It took planning and effort. Fortunately, I’m getting used to the routine.

I pulled the curtains first and put absorbent pads on the bed and floor. Then I rounded up towels, washcloths and buckets (small for soap, large for rinsing). I filled the buckets with hot water and put them by the bed. I found the soap. I got an extra towel for my knees (kneeling on linoleum hurts). Finally, I undressed Jack.

Jack’s bath proper took an hour and a half. To keep him warm, I wet, soaped, rinsed and dried one part of him at a time. I also aimed the heater at him. This kept him comfortable, but left me looking like I’d been swimming. I was soaked when I was through,

As I worked, I told Jack what I was doing, step by step. This way he wasn’t surprised. He was quite perky after his bath, especially after I dressed him. I, on the other hand, was ready for a nap. But it was time to make his lunch.

It takes energy to care. Today I had none. I didn’t stop caring; I just did it slower. But I felt worn out and overwhelmed. When Tim came and set up a movie for Jack, (Star Wars. Volume maxed.) I had to leave. I grabbed my journal, hid in the laundry room, and tried to write. But I was too tired to write. I started to cry and found I was also too tired to cry.

I am not tired because of Jack. I am tired because of my thoughts about Jack and of what lies ahead. When I look at 2018, which is now breathing down my collar, I don’t want it. All I see is this same treadmill, this day after day slog of feeding, dressing, bathing, wiping his bottom, cleaning spills and telling him how to use the bathroom every single time he goes in. I see me going on every shopping trip because he won’t go without me. I see no room for myself in my own life. Jack’s insistence on being with me means my me time has dropped to zero.

And further ahead? Just more worse, faster, until he dies. I have the skills to care for him; I don’t plan to stop. He will not be the first dying person I’ve helped. But he will be the first dying husband I’ve helped. It is my joy, my honor, my love…and my albatross.

When I see what’s next on this journey, I don’t want it. I want to stop time right now, to freeze the calender right where it is. I don’t want to look ahead, because I dread what’s coming. How do I plan a year knowing I will be watching Jack die? How do I find anything to hope for?

In this moment I have no clue. All I see when I look ahead is Jack’s life winding to a close. He will keep fading from my life until he disappears into darkness. And on this night, when this treadmill to oblivion is all my mind can see, I can’t think of anything to look forward to. I don’t even have the energy to try.