Jack was admiring my ability to open a box of cereal this morning. I was caught between loving his admiration and feeling sad that he thought it was natural that he doesn’t know how. Then I realized that it was actually a good thing. It meant I’ve been focusing on the right things.

Jack is past the point of feeling embarrassed that he has trouble. He thinks it’s perfectly normal to not know how to put a shirt on or deal with shoes and belts. He blames the manufacturers for ‘making things the wrong way’ or ‘making things too complicated’. I’d like to think it’s because I don’t make a big deal out of his inability to understand.

But my not making a big deal out of his inability to understand is a hard won trait that has grown out of hundreds of small, daily choices. I believe that how I choose to perceive and interact with Jack has a lot to do with this. Jack is still Jack, after all, at an essential level, and he still has feelings and needs. I have to choose repeatedly, however, to see him in this way, rather than viewing his dementia as a tragedy that has taken him away from me.

I am not saying that what happened isn’t a tragedy. When I see this intelligent man sitting at the table wondering what his cereal bowl is, I want to cry. When he marvels at my ability to change a light bulb or wonders if I have enough experience to use a knife, I feel overwhelmed by our new reality. Sometimes the weight of that reality is very heavy indeed.

But in that moment, and in countless others like it, I have a choice. I can see Jack as having lost so much and succumb to the feeling that life is unfair (sometimes I do). Or I can choose to see Jack as having a new and unique way of experiencing his world, one that I can learn from and understand. I can look past the ‘normal’ to the deeper place where Jack is still the same human with the same feelings. I will leave you to guess which choice makes things easier.

I would like to think that this constant daily choosing makes it easier for Jack to see himself as being normal in how he perceives his world. I don’t ever want him to feel like he’s deficient in any way. I want him to be comfortable asking me for help no matter what he struggles with. I don’t want him to feel like there’s something wrong with him.

I try to accept his perceptions as normal, to the best of my ability. I am not always good at it. But it seems to make it easier for both of us. I can give him the gift of acceptance even if I can’t give him much else.

My day began at five. I woke partway to something heavy falling across my legs. Jack’s yell of surprise woke me fully. I sat up to see our legs buried under his clothes bins. He had kicked them in his sleep and knocked them over.

“Help! I can’t move!” Jack hollered, flinging an arm out and hitting me in the nose. “Get me out of here!”

“Hang on a sec, dear. It’s okay.” I yanked my legs free and got up to restack the bins, grateful they hadn’t spilled. As I knelt on the edge of the bed to grab the back bins, I realized there was no edge. It was just blankets. I slid and tried to catch myself, and my foot got caught in the milk crate by the door. I felt my toe crunch and pop as I hit the floor. Fortunately it was the nerve damaged foot so it didn’t really hurt.

“What are you doing down there? I need help!” Jack said, trying to sit up in bed. “Can’t you see I’m stuck?”

“I’ll fix it, dear; just give me a second.” I said. I pulled myself up, sat on the edge of the bed, propped my foot on my knee, and put my toe back where it was supposed to be. Then I picked up the clothes bins and put them back in place.

“What was all that?” Jack asked. He was propped up on his elbows, watching me work. “How did that happen?”

“You kicked the bins in your sleep and they fell over. It’s not a big deal.” I answered, putting the last bin back in place. Then I crawled back under the blankets, hoping to get a little more sleep. Just as I was starting to doze off, Jack nudged me with his elbow.

“I have to get up.” he said. I confess I grumbled a bit as I got up to let him out of bed. Jack went to the bathroom, came back, plopped himself down on my legs (I was back under the covers) and started to look for clothes.

“What are you doing, dear?” I asked, worming out from under him. “It’s only six-o-clock. You don’t have to get up yet.”

“I have to find my clothes.” Jack answered, pulling a bin out and starting to unpack it. I gave up on sleeping and got out of bed myself.

Now we are having breakfast. Jack is in full uniform, keys around his neck, looking like he’s raring to go. I have one eye partway open and am slurping coffee as fast as I can get it down, hoping it will get me going. I have a busy day ahead.

“Are you going to help me today?” I asked Jack, as he wolfed his Special K. Jack looked up, chin dripping, and shook his head.

“Nope.” he answered promptly. “I QUIT!”

The joys of dementia…SIGH. Think I’ll have another cup of coffee!

It’s been raining all morning. Jack and I have been having a conversation about our future, which is rare these days. Our conversation gave me a deeper insight into how he sees things. It also removed a load I didn’t know I was carrying.

For several weeks now, Jack has been saying he wants to go home. All we need to do, he said, would be to get a car and he could drive us home in two days. I assumed he meant back to PA where our new life began, so I’ve been wracking my brains trying to figure out how to make it work. But nothing would come together.

I also felt no urge to leave. The thought of having to uproot us and somehow move ourselves back across the country was overwhelming to think about. It didn’t feel right. I struggled with guilt, feeling like I was letting Jack down. I was berating myself for not moving fast enough.

This morning all of that is gone. After listening to Jack for over an hour, I finally understood and was able to help him articulate where he was mentally. This, in turn, calmed him down because he had finally made himself heard. Now he isn’t insisting that we pack up and leave. I am grateful for the clarity I gained by taking the time to listen.

Jack wants to go home. But the home he longs for exists only in his mind. It is the clearest memory he has right now, and it is familiar. He wants to go back to that place, where he is surrounded by family and our current world doesn’t exist.

He has lost huge chunks of his life. He no longer remembers driving us across the country. He doesn’t remember how proud he was to work here. He barely remembers the life we had in CT, which is probably a blessing. I don’t want to remember much of that either.

He remembers our wedding, sort of. He said this morning that he only married me because no one else was around. I doubt he means it. Our courtship has been erased too, so our wedding probably feels very sudden to him now.

In his mind, he was home one minute, raising a family. The next minute, he was trapped in a trailer in a place he doesn’t recognize, with no way to get back home. Since his newer memories are gone, it probably does feel like it happened that way. It gave me insight into how he sees his world now, even if I can’t fix it.

The bad news is, I can never take him to the home he longs for. I can’t give him back what he craves. But the good news is, I no longer have to figure out how to get him back home. That burden, whose heaviness I ignored, has been lifted. There is a certain relief in that.

I suspect that someday soon Jack will forget he wants to go home. While I dread that day, it will also be a relief, because he won’t be tormented by a wish for something he can’t have. I dread the day and I hope it comes soon. It’s been a hard road for Jack and he deserves to have some peace.

I chose this title as a way of illustrating how Jack sees the world. I am not doing this to make fun of him. It is a normal part of dementia which can be exhausting.

Everything is a crisis in Jack’s world. I attribute this to the loss of his inability to…it’s hard to find the right word. Anything that goes missing, whether it’s a button or an important document, is seen as a crisis and reacted to accordingly. Which means…

“Somebody stole it.” Jack declares. This is his usual conclusion. “They came in here when I wasn’t looking and they stole it. I’m never going to get it back. The whole world’s gone crazy!” He sits on the bed, his shoulders slumped, the picture of frustration.” Why does this always happen to me?”

A person without dementia can size up a situation and respond accordingly. But Jack no longer has that ability to size things up. So everything is treated as a full fledged emergency. If I don’t address it quickly enough, his frustration turns to anxiety. If that is unchecked, he panics. If that happens it takes a long time to calm him down. I learned this the hard way. It’s not fun.

Right now our marriage certificate is missing. Jack has been upset about it for two days. I find it baffling that he can forget he’s just eaten, yet he will obsess about something missing for literally days until it’s found. It’s one thing about dementia that I’ll probably never understand. But I digress.

We need the marriage certificate for the VA application, which I should have sent in last week. But I haven’t been able to find it, since Jack put it in one of his safe places. Since one of his ‘safe places’ is the garbage can, I’m a bit worried. But it’s not a catastrophe. All I have to do if I don’t find it is have our old town hall fax me a release, which I will sign and fax back, and then they will mail me a copy and I will send them $20. Or something like that. I talked with an unhelpful lady who said I would have to come in and pick the document up because “we don’t send personal documents through the mail”. So I’m not sure how I will actually get one.

But Jack, true to form, is insisting that “somebody stole it”. They came into the trailer when he wasn’t looking and took it away. Or else someone in the bank took it out of our safe deposit box so they could use it for themselves. I would laugh about the whole thing if I wasn’t busy pulling my hair out.

Anyway. My job for today, according to Jack, is taking apart the trailer to find this document. And I need to do this RIGHT AWAY, before I’ve eaten breakfast or had coffee. This is a real emergency, he says, for the fifteenth time since his eyes opened. We need to drop everything and FIND. THAT. PAPER.

It isn’t a fun way to start the day. But as trying as it is for me, it is much harder for him. I can’t begin to imagine the hell of seeing one’s whole life as a life or death matter.

I take that back—I can. I live with someone who does. And it’s no fun for either of us.

When I was growing up, I learned to ask permission before I did anything. This habit was ingrained for many years. It carried over into our marriage without my realizing it. If I wanted to do something solo, I asked Jack’s permission first.

In some ways this was a good thing. It laid the foundation for a marriage where we discussed everything and made all our major decisions together. In other ways it wasn’t such a good thing, because it meant that I unknowingly deferred to everything he wanted and put him first. As wife, I laid aside huge parts of myself “to make the marriage work”.

In this respect, Jack’s dementia has been a gift. I would never wish it on him; don’t get me wrong. It is hell to deal with, and worse to watch him go through it. It is not a path that either of us chose. But there is a gift in it that I have just recently discovered. It is the freedom to be my full self, for the first time in my life.

I realized that involving Jack in all the decisions is something that no longer works. This doesn’t mean I don’t tell him anything. He is still my husband and wants to be part of the decision making even though he no longer understands. I will never make him feel excluded.

What it does mean, though, is that I have let go of the need to explain my decisions, justify them, or ask his permission before I do something. He comprehends things at a child’s level. When that realization finally sank in, it was a light bulb moment.

You wouldn’t ask a child for permission to spend money. You wouldn’t ask a child’s permission before you made a financial or a medical decision for him. You wouldn’t involve him in complicated matters, like wills and POAs. If he asked what you were doing you would tell him and answer his questions. But you wouldn’t get his permission before you made said decision. The child might complain about a decision or say hurtful things, but this is due to his more limited perception and understanding. It is not because the child hates you.

Jack is a child in his understanding. This is hard to see, but it is also liberating. It means I don’t have to take his hurtful comments personally, nor do I have to alter my behavior to keep him happy. He no longer realizes what is in his best interest, and he is no longer fully able to care for himself. In that respect he is the child. And I am the parent who must care for him and make the decisions that are in his best interest, no matter how much he might complain or say unkind things.

This means that, for the first time, I can add myself to our marriage. I can take actions that benefit me as well as us. I can invest in myself and in my own future, and build a foundation that will support me after he is gone. And I don’t need to ask his permission or defer to him if he says no.

It is a bittersweet moment. Bitter because I have lost the partner who would celebrate my decision to go back to school. It was the one thing he always wanted me to do, but we never had the money. Now that we do, he wouldn’t understand my choice. The dementia, which breeds paranoia at times, makes him think I am stealing his money and that I am planning to leave him. So I didn’t tell him about this expense. It was not a choice I made lightly or happily.

But it is also sweet, because I am realizing that I matter. For the first time in my life, I can decide for myself without having to explain, justify,or ask permission. This moment for me has been a powerful awakening. It means that I am a person in my own right. And it is okay to be me.

Yesterday I realized I did something right. Despite the constant voice in my head that says I’m not doing enough, or I’m not doing it well enough or fast enough, I still did okay. I realized this when Jack made a comment. It wasn’t intended as a compliment, but it was the best compliment I ever got.

We had been talking for three days. I’d been trying to get to the bottom of his latest assertion that he’s done here and wants to leave. “All you have to do is buy a car and I can drive back home.” he kept saying. “It’s easy!” Never mind that he can’t drive, nor do we have resources to move. Nor does he understand all the expenses we would be saddled with if we did. All he knew was that he wanted something and I wasn’t giving it to him. In that respect it was a pretty tough week.

But I kept asking questions. I kept coming at it from different angles, trying to help him articulate what was really going on. This took time, patience and a lot of deep breaths. But it also helped me to realize what was really going on in his mind.

Jack wants his freedom. Part of him remembers when he could simply hop into a car and drive somewhere. He wants to be able to come and go as he likes. If we had a car, he would have a choice about leaving. At least he thinks so.

Right now he feels trapped. He hasn’t driven since February of 2016, when he voluntarily took himself off the road. He knew then that he wasn’t a safe driver, and he was wise enough to stop. Unfortunately those days are gone.

Jack thinks nothing is wrong with him and that he can drive just fine, but he can’t. He can barely dress himself. He insists that he no longer has dementia and that he is much better. (There is a medical term for this, but I can’t remember what it is). He is fine now, he tells me. It’s the rest of the world that’s gone crazy.

“Except for you.” That was what he said yesterday after we had been talking for an hour and a half. “The whole world has gone crazy except for you.” When he said that, time seemed to stop. There was so much underneath those few words.

That was the moment I knew that, despite all my perceived failings, I was doing things right. All the hours spent listening to Jack, looking past what he’s saying to what might be underneath, and seeking to understand his language are paying off. It may not be a huge victory, but it is confirmation that what I am doing for him makes a difference. And on these days, when he’s slipping away more and more, I can’t ask for more than that.