Back in early May, Jack began saying he wanted to go home. I assumed he meant back to the East Coast, and I wracked my brain trying to figure out how we would do it. Neither one of us drives; we don’t have a vehicle; and money has been tight (especially since I went back to school). I felt like I was letting him down since I couldn’t give him what he seemed to want.

Then one day, Jack started talking about the home he wanted to go to. “Do you remember the woman who lived behind us?” he said. “She had a big house out in back and she couldn’t take care of it. She was taking care of her mother.” I soon realized he was remembering a different time in his life, when he was married to his first wife. He vividly described the town, how everyone had known him, how happy he was. “That’s where I want to go.” he said. “Maybe I can be a policeman again.” It was bittersweet to learn that the home he wanted to go back to existed only in his mind and that I could never take him there.

But it didn’t last. ‘Home’ has changed several times since then, as Jack’s memory continues to fade. From this idyllic period, his mind went to wherever he had lived after he came home from Vietnam. I never figured out where that was, but during that time his PTSD was in full effect. He had nightmares on and off, was very jumpy, and his sundowning was a nightly issue. When he couldn’t sleep he would wake me up too. I got used to being permanently tired.

That settled after several weeks. But then Jack started talking about New York, where he had lived during his earlier years. This was the hardest time yet, requiring every tool I had; because he became a sullen, angry teenager who spoke with a sneer and was ready to pick a fight at a moment’s notice. His favorite phrases during that time were, “All you have to do is—” and “You think you’re so smart.” I got a very clear picture of how his dad must have been. It wasn’t pretty.

Whenever he talked about home then, he would always end the same way—he would bang his fist on the table and declare, “I hate New York. I’m never going back!” I would reassure him that he never had to. I repeated this many times, hoping it would sink in.

I thought I would never survive this period. But last week I realized that Jack’s definition of home has changed again, perhaps for the last time. We were looking at photos of some of his old homes and his family, and he didn’t know any of them. He just shook his head, even when I reminded him. “I don’t know any of these people.” he said, as he flipped through them. “I don’t remember these places.” It was a bittersweet moment, because while it meant he was freed from missing both, it meant the dementia was progressing. I would be lying if I said I wasn’t saddened by that.

Today, when Jack talked about wanting to go home, I asked him to tell me about the home he wanted to go to. His face lit up at the question, even as he struggled to express himself.

“It’s up on top, but not too high.” he said, using his hands to make a mountain shape. “We can buy a house there, one that belongs to us. There is no cars and no crazy people. You can go to your school any time you want. All we have to do is get in the car and we’ll have everything we need.” I nodded as a light bulb went off in my head.

“You want a place where you feel safe and you know where everything is.” I guessed. Jack nodded, looking both wistful and delighted.

“Yes!” he said, happy that I’d understood. Then his mood shifted as it often does. “And YOU will always be there. I’ll always know where you are.”

I swallowed hard. “Do you feel safer when you know where I am?” I asked. Jack nodded.

“Yes.” he said simply. “Because then I know you won’t leave me.”

I realized then that Jack’s idea of ‘home’ has returned to his first two homes: his foster home, and before that, the one he had as a baby. He remembers the feelings of safety and comfort, where he knows where everything is and everything makes sense. It is a place free of things like cars and ‘crazy people’, of anything that makes him anxious. Home has once again become a retreat from a life he no longer understands.

Home has become the place where Jack is safe with mommy. But this time ‘mommy’ is me.

I’ve been having a hard time these last few days. I’ve been waking up angry, going to sleep crying, and feeling fed up in between. This is so far from my usual self that (up until last night) I was baffled. Was it hormones? My diet? The full moon?

When I shared how I was feeling with my caregiving support group, two wise women who have walked the path put it clearly. “You’ve hit the wall.” they both said. As soon as I heard the words, I realized how well they fit.

I’ve long been familiar with the term “hitting the wall” as it applies to running. In running, you hit a point where your muscles are starving for oxygen and you physically feel like you can’t move. It literally feels like you have slammed into a wall, and it takes effort to keep moving. Your entire body is screaming at you to stop.

It’s a bit harder to see when that wall is emotional. I didn’t realize it had happened at first. All I knew was that I was suddenly more tired than usual; I was losing patience with everything, and I was flying off the handle at myself for stupid stuff (“you stupid a$$hole—you didn’t flip the eggs right!”). I chalked it up to going through The Change and waited for it to pass. It didn’t.

The outside stresses seemed to mount. A friend died unexpectedly. My insurance said cataract surgery wasn’t covered. Jack had a slew of bad days that pushed me to the limits of my patience. Tim broke the news that he was leaving. I had a payment issue with my classes that resulted in a fairly large (for me) credit card bill. I am still paying that down.

I started waking up at five. Then at four. My brain was loudly reminding me of everything I should be/shouldn’t be doing when I was trying to sleep. I would lie there trying to organize all the to do lists into coherency so I could get some rest. I finally got up one morning and dumped the whole thing into my journal. It filled, so help me, two and a half pages.

But the crowning blow came one night last week, again when I should have been sleeping. I was lying there thinking about everything I needed to do, and the one thought I’d been trying to ignore suddenly became crystal clear. “Jack isn’t going to get better. No matter what you do it won’t be enough.” How do I deal with a thought like that, especially at two-o-clock in the morning?

I didn’t realize until that moment that part of me was hoping that Jack would get better. Now reality has sunk in: he isn’t going to. How do I make peace with that?

My first response, as it always seemed to be, was to question everything I’d done up to that moment. Was there something I missed? Did I not work hard enough, feed him well enough, give him enough stimulation to keep his mind from slipping away? What did I do wrong?

The answer, hard as it is to take, is nothing. My love is not strong enough to keep him from going. But it is hard to accept that no matter how much effort I make, I can’t stop the progression of this disease. To quote my caregiving friend, “Now you see what’s on the other side of the wall. You will readjust your GPS and your cruise control and you will go on.”

Now I have to create the how. I have to decide how I will come to terms with this ‘elephant in the room’ and continue moving forward. I will have to find my own way because there is no caregiving map to follow. There are only guideposts placed by the ones who have gone before me. I will still have to make my own path.

I have a critical voice in my head. I seldom mention it. It has been part of my life for years. It got especially loud after Jack was diagnosed with dementia.

Most days I can ignore it. I know that what it says is usually rubbish. I have learned over time to question it, to apply logic to its accusations. That is often enough to shut it up.

This morning, though, it is relentless. It was already talking when I woke up. When I tried to reason it away, it dragged out the guilt. It knows where to set the hook.

As a result, I’ve so far spent the morning questioning every caregiving decision I’ve ever made or am planning to make. I would normally let the dialogue rage and I would live as if it wasn’t there. But I don’t feel like being normal today. I want to let some light in.

I am a lousy caregiver first of all, the voice says, because I have cooked the same meal for Jack for three nights in a row. (The shame!) Granted, it is chicken with rice and quinoa, but I served it without any vegetables. (Gasp!) Do I want him to die?? A REAL caregiver would not only give him vegetables at every meal; she would also make all his meals from scratch, using only organic ingredients. I am obviously not qualified to be a caregiver!

I am a bad caregiver because I am thinking about shutting Jack’s phone off permanently. But he doesn’t use it. He’s forgotten he has it. And no one calls him on it anyway. I’d rather put that monthly payment into the savings account so I can start building it up again. We need the money at this point more than he needs a phone.

I am a ‘terrible caregiver’ because I am thinking of cutting Jack’s vitamins down to the most important ones. Don’t I know (says Critical Voice) that I would be compromising his health if I did this? Again, do I want him to DIE?? But lately Jack has been grumbling about the amount of pills he’s taking, and some days he’s refusing them. And that reclaimed money could also go to the savings account. I wouldn’t just throw it away.

So far, I’ve held my own with Critical Voice. But it always saves the Big Accusation for last. I am a lousy caregiver, it says, because I am making Jack live in a trailer (of all things!). Not only that, but I am giving him substandard food (no veggies with each meal, remember?); I am not keeping the trailer spotless; I am not being a good wife and putting him first in everything like I ‘should’ be; and I am simply not doing enough and should be ashamed of myself. To this I have no answer, mainly because I’m tired of the debate.

But writing this has done one thing. It has made me laugh at the absurdity of even trying to debate, because none of the accusations are true. The truth is, I am doing the best I can under some very trying circumstances, and I can’t ask more than that of me. I ask enough of myself already.

Jack was fairly lucid yesterday. These days are a blessing to me, even if he forgets them later. On those days, he is able to help me understand how he sees the world. Those discussions are always eye opening.

Yesterday was no exception. I realized once again that inside, Jack is the same person. The difference is, he is unable to express it outwardly. I’ve seen this for a while.

What surprised me was that Jack had no idea he is doing things differently. He thinks he is the same as always.

“Why don’t you understand me?” he asked, at one point, when he’d gotten a little frustrated. “I’m making things perfectly clear. What’s wrong with you? I know you’re not stupid.”

I took a deep breath. “When you talk to me, you have a picture in your head, right?” I said. Jack nodded. “And you also hear the words you want to say.” Jack nodded again.

“I know what I want to say.” he agreed.

“And inside your head it’s perfectly clear.” I wanted to clarify this, because I had suddenly realized something. “You know all your words and how you want to say them.” Jack nodded. “What’s happening is, I’m not hearing them that way.” Jack looked puzzled.

“Explain.” he said. I took another deep breath.

“Let’s say you want to ask me where your hat is.” I said, speaking slowly to make sure he understood. “Your mind says, ‘Do you know where my hat is.’ ” Jack nodded. “The part of your brain that isn’t working right doesn’t let that question come out if your mouth. That part says, ‘Where is my thing that I had yesterday’. Jack looked shocked.

“I say that?” he asked. I nodded. “I don’t hear that at all!”

“You hear the question that’s in your head.” I said, and he nodded. “You hear yourself talking normally and you get mad because I can’t understand.”

Jack is inside his body. He thinks and feels as he always has. I’ve known this for a long time. But until yesterday, I didn’t realize that he has no awareness of how he talks now. In his mind, he is as normal as ever and he is talking just like the rest of us. No wonder he gets so frustrated.