We have been working with Jack’s new flash cards for several days now. I already see a difference. Jack is more animated, more talkative, more ‘here’. He has even gone out and worked for two days, even though it’s the weekend. I don’t know if that’s due to the flash cards, but I’d like to think so.

Tonight we worked on Activities (where you describe what the person is doing) and Categories (you name each object in a group and then name the category they belong to). I make it fun, like we’re playing a game. Jack is an oftentimes unruly student, mostly in a good natured way. He loves looking at the pictures and making up stories about them.

I started with a picture of a girl doing ballet. “What is she doing?” I asked.

“She’s—” Jack held up his arms, mimicking the pose. “And she’s–do-do-do-do-do-do-do-do.” He sang a series of noises to describe her turning around on her toes. “Like that.”

“Okay. And what is the ‘do-do-do-do-do-do-do-do’ called?” I wanted to know. We have our own language these days, but it helps him understand me.

“It’s called dancing.” Jack answered promptly. I nodded and held up another card.

“What is he doing?” It was a boy riding a skateboard. Jack studied the picture, frowning. Then his face lit up.

“Whoosh, whoosh!” he said, moving his hand back and forth. “He’s on the board.”

“And what type of board is it?” This was pushing it a bit, but I wanted him to think. Jack stared at the card, his forehead wrinkling.

“I don’t know.” he answered. So I told him. “Oh yeah, a skateboard! Why couldn’t I remember that?”

“You haven’t seen one in a while.” I held up a picture of a girl waving hello. “What is she doing?” Jack surveyed the picture, a devilish grin spreading across his face.

“She’s making out!” he exclaimed, the little boy pushing his boundaries. I gave him a look. “Well, she should be making out. With me!”

“I’m sure she should. But what is she actually doing?” I asked him. Jack gave me a look I knew well.

“She’s giving her teacher the finger.” he said, looking like butter wouldn’t melt in his mouth. I had to work hard not to laugh.

“No dear, she’s waving hello.” I said. Jack’s answer was an emphatic, “I knew that!”

We worked our way through the stack of forty cards. Then I moved on to Categories. The first card I held up was a giraffe.

“What’s this?” I asked.

“It’s a—it’s a—” And the noises began. Jack stuttered. He groped for the word. He blew raspberries (note to self—have tissues handy). He smacked his head with his hands. “It’s a ger—a ger—I can’t spit it out!”

“Well, you got the ‘ger’ part right.” I reassured him. “What comes after that?”

Jack thought. Then he thought some more. He repeated “Ger-ger-ger-” over and over to himself. Suddenly his face lit up.

“GERANIUM!!” he hollered, his entire face lighting up with a smile. “It’s a geranium!”

I didn’t have the heart to correct him. I was laughing too hard anyway.

Jack has always been stubborn. I knew that when I married him. At times, due to his dementia, he digs in his heels so hard that not even God can budge him. I am slowly learning to take a deep breath at those times and let him be.

Jack’s stubbornness is his biggest curse. Conversely, it is also his strongest asset. During his more lucid times, he is aware of what he’s losing, so he digs in his heels, determined not to let the dementia win. He fights against the confusion as hard as he can, vowing that he will subdue the Gremlin once and for all. That HE will win. That he will be able to drive again, and not have to depend on others. This is his ultimate goal.

I have promised him that I will do all I can to help him. I don’t always have the same faith in the outcome, but I won’t tell him that. My job, as I see it (and I know job is a poor term) is to help him remain independent for as long as he possibly can, in any way that I think may help him.

I’ve been told more than once that all my efforts will come to nothing. I’ve been assured that all I have to look forward to is a long, slow downward spiral. I don’t deny that’s possible. But when I’m sitting with Jack in the trailer and he tells me he wants to get better, then all bets are off. I will never tell him that fighting this won’t work.

Last week, Tim (Jack’s care person) quietly pointed out to me that Jack couldn’t remember how to make letters. Jack was signing a backlog of paperwork left by the previous care person (which involved writing his initials multiple times); and each time Tim had to show him where to write. He also had to show him HOW to write. He finally made a J and an A on a separate piece of paper for Jack to copy. This helped. But he then had to help Jack write and spell his name. Jack was both embarrassed and shocked, because he had no idea that this ability had left him. I hadn’t realized it either.

The next day, after we had finished lunch, Jack blurted out, “I need you to help me with my writing. I can’t remember how to write.” I wasn’t sure exactly what he needed, so I got a piece of paper and put it in front of him.

“Do you want to try writing the letters first?” I asked. Jack nodded. “Okay. Write an A…now write a B…”

We got as far as G and Jack drew a blank. “I can’t remember how to do it.” he said, looking anxious. His entire body was tense and he was holding his breath.

“It’s okay, darling. This isn’t a test. We’re just exploring what you can do so we know where to start.” I reassured him. Jack nodded, some of his anxiety fading.

“But I still can’t remember.” he said. “It was there and now it’s all gone. Why can’t I remember?” Then, without waiting for an answer, he added, “I can’t talk either and I don’t know why. I was better before. I need to go back to that place so I can learn to talk again.” He meant the speech therapist. “She wasn’t great but she helped me. I have to get better.”

“Well—” I began. Then I thought of something, and picked up my phone. “Hang on—I have an idea.” I was already doing a search on Amazon. Everything his speech therapist had used in their half an hour a week sessions was available to buy. And I had much more than half an hour a week. “I can get everything she had and we can practice right here. Would you like that?” Jack nodded.

“I have to get better.” he said. “I want to talk right again so I can drive.”

Everything I need will be here Monday. I ordered sets of flash cards, a set of story cards (to practice sequencing), a magnetic whiteboard with magnetic words for making sentences, and more. Jack is all excited because he will be learning to talk again. I’m excited because I found another way to help him.

I am well aware that this isn’t a permanent solution. But it is a solution that works for now. It’s another tool in my arsenal of ways to help Jack maintain his independence. As long as he is determined to fight, I will be fighting right beside him.

This post is not about Jack. This post is about me. I seldom write about myself, as most of my life takes place in relation to Jack and what he needs. But once in a while my own dark places pay a visit, forcing me to look them in the eye and stare them down. Tonight I am staring them down with my words.

I am far from suicidal. But in this moment, as I try to balance self care with caring for Jack, I am stuck in a hole. On the surface, you could say my vitamin D is off, or that I haven’t been getting enough rest. But that is just the surface. It is my own fear that has caught me.

I stare down my fears at night, more than anyone knows. I wrestle with the what ifs. I struggle to comprehend a someday without Jack in it. (That feels too big to fathom.) I lie awake at night, terrified beyond words at the thought of my vibrant, happy husband disappearing in front of me. But that has already happened in many ways, so that should no longer scare me. It still does.

I miss Jack most after dark. He is still here, of course. But his presence isnt, if that makes sense. What I miss are the long conversations, the talks in bed, the falling asleep in each other’s arms, the easy companionship, and the wordless energetic connections. All of that is gone now. I don’t love him any less, but I don’t know if he understands.

I dwell on my own shortcomings at night. This is a long-standing habit that shows up more often than I care to admit. It is worst at three in the morning, when I lie there with Jack snoring beside me and I can’t get back to sleep. I think of everything I haven’t done, or have to do, or didn’t do, or did wrong. I question myself constantly. I wonder if I’ve done anything right at all.

And then there are the times I outright hate myself. This usually happens at night after Jack has woken me up for the fourth time because he needs to pee. Or else he refuses to put his CPAP on and I have to listen to him snore. Or else he goes into sundowning mode, and I am short on patience and frustrated and get upset rather than distracting him. At these times, I am ashamed of the thoughts in my head. I feel like he would be better off without me.

I feel guilty because I can’t fix him. When he begs me to stop what’s happening to him, I cry because I can’t. I don’t cry in front of him, of course. I find ways to reassure him, and I tell him I will never leave no matter what happens. The tears come later. Like everything else, they show up in the dark, usually when I should be asleep.

But somehow, even in the darkness, I find the strength to continue. When I pray for help to stay patient, the patience comes, and the angry thoughts (usually) stay in my head. When I ask God for strength, it always comes. By some miracle, I can stay patient longer, find more humor even in the darkest times. And on nights like this, when the darkness seems too strong, it is the act of writing that reminds me it isn’t. I will always be thankful for that.