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.

Jack came back yesterday. Last night and this morning, he was almost his old self. We were together again, a couple. I have no words for how good that felt.

It was different for Jack. For that brief time, he saw clearly how much of his life he’d lost. He realized how he was. He saw (I think) his future.

We talked for two hours last night. It was an intense conversation. He was angry, sad and scared. He had questions, so many questions. I tried to answer truthfully without being fully truthful. I wouldn’t take away his hope.

“What happened to me?” Jack asked, shaken at his insight. “I can’t remember anything. My whole life is gone.”

“You have something called dementia.” I said. “It makes your brain not work right.” Jack nodded. He understood that much.

“Where did my life go?” he wanted to know. I took a deep breath, praying for the right words.

“Imagine your whole life is a picture on a blackboard.” I said. “Can you see that?” He nodded. “Dementia is like an eraser. It erased big parts of your life off the chalkboard and they’re gone. That’s what the blank spaces are.”

“I know they’re in there but I can’t find them any more.” Jack said, meaning his memories. Then he changed the subject.

“Is it going to get better? Will I get better?” he asked. I wanted to say yes and I couldn’t say no.

“We can always hope.” I said. It was the best I could come up with and it wasn’t enough. Jack’s shoulders slumped; his eyes filled with tears.

“Then it’s over.” he said, his voice breaking. “I don’t think it’s going to get better. I’m not going to be able to drive again.” He cried silently for several minutes. Then he burst out, “Why did this happen to me? What did I do?”

“You didn’t do anything. This just happened. You can’t control that.” I answered. Jack nodded, still fighting tears, letting my words sink in. Then he squared his shoulders and looked at me.

“You need to get your schooling done.” he said, his eyes intense. “Then you need to lock me in a room and leave me there. You can live wherever you want.” His voice wavered, then cracked. “Just come and visit me once in a while.”

“I’m not leaving you.” I told him. But he shook his head.

“I’m no good. I can’t do anything!” he said. “You need to put me away somewhere.” I swallowed the lump in my throat and took a deep breath.

“You don’t need to do anything to earn my love.” I told him. “I didn’t marry you for what you can do. I married you because I love you. And I’m not leaving. I’m not putting you away. We’re walking this road together. You’re not doing this alone.”

Jack’s shoulders sagged again, this time with relief. He wrapped his arms around me so tight I couldn’t breathe. He buried his face in my shoulder and burst into tears.

“Thank you.” he said, his voice raw. “Thank you.”

I held him tightly, not speaking. I was crying too.

This morning, Jack was still here. He bounced out of bed, said “Good morning, sweetheart.” and put his clothes on. He got his shoes on the right feet. He said, “I love you.” several times. He even kissed me.

I felt him across the table from me as we ate. Some of you will understand that.

“We need to get this apartment quickly so I’ll know I’m safe.” Jack said, as we dug in to our eggs and cereal. I told him Tim was coming at ten to drive us over. Jack nodded, munched, swallowed and tapped me with his fork.

“We need to get this apartment quickly so I’ll know I’m safe.” he repeated.

“Tim’s coming at ten, darling. We’re dropping the papers off this morning.” I said again. Jack nodded, reassured.

“Good.” he said.

We drove to the apartments. Tim joked with Jack on the way, and Jack actually joked back. He was chatty and happy, saying how nice it would be to have a real place to live. Tim was amazed at his clarity and awareness. It was a lively ride.

We brought the papers to the office. The lady interviewed us for an hour; then we all relaxed and chatted as she reviewed everything. She wrote a few things down and typed something on the computer. Then she looked up from the screen.

“Everything looks good. We’ll call you when a place opens up.” she said. “You’re number ten on the list now, so it might be a while. But you should be in some time next year.”

I looked over at Jack, smiling. I saw the blankness rising in his eyes, and I knew that he was gone.