As I wrote last week Michael was sleeping all the time and impossible to wake. He was saying he was anxious especially about me going back to work. They prescribed Ativan for this anxiety.

We had taken all the meds away except for the seizure meds (Keppra) and then slowly put them back, adding the Ativan.

When I left for work on Monday he was sluggish and out of it. I worked all day feeling badly and almost in tears (on my first day!). They were going to re-add the Decadron (steroids) to see if it would stimulate his appetite and alertness (it always does). But too much gives him too much energy and he’s bouncing around the house at 3 am. Because he has the brain tumor, he’s not quite sure what he is doing and some of the things he does can be dangerous. He’s also quiet…always has been…so he can get into mischief without so much as making a sound. So we cut back the Decadron at the end of last week when he was up and about during the night and added it back slowly to see how we could moderate both the sleepiness and the spinning like a top. A happy medium would be nice but we can’t seem to find it.

On Monday after work I walked to the train station and bought a roast beef sandwich as I always did before. When I was working I bought one at the deli every night and ate half on the way home and gave Michael the other half when I got home. It was habit.

So Monday night, out of habit and without thinking, I bought it and ate half. Then I sat staring at the other half and it hit me. There was no one to give my half sandwich to. So I threw the other half away and felt perfectly horrible…like part of me was going in the garbage. The whole roast beef sandwich thing was such a thing with us. I loved buying them because his face lit up like I had just given him a car. He was always like that. Easy to please in certain, predictable ways.

Michael was always very predictable in almost every way. Now I didn’t know what I would find when I got home.

When I got off the train I faced the thing I had been dreading. Watching other people get picked up by loved ones. I got into the car and tears started streaming down my face. I would never have that again.

I came home and he was sleeping. I bent over and kissed him and his eyes sprang open. “Hi honey!” I said enthusiastically. He sat up and started talking to me. I asked him if he was hungry. He hadn’t eaten in 3 days. He said yes. I made him some food and sat and talked to him about my day. It was so nice. He was back.

The next day he was moderately good. He was alert and eating and paying attention to everyone and everything.

On Wednesday he started to get antsy. Talkative in a nasty way. Saying things he would have never said when he was well. Unpredictable.

On Thursday morning he woke up at 3 am and made himself a breakfast of watermelon, spaghetti and whipped cream. Then he poured corn starch all over the couches and then he turned on all the lights and all the water faucets. Unpredictable.

There was more but I’ll stop there.

When I asked him to come upstairs and call me if he needed something and not knock around by himself, he yelled at me in a way he never had before. He practically spit the words at me. Telling me he wasn’t a child and he knew what he was doing. I tried to calmly explain that I wanted to help him with whatever but he was angry. Unpredictable.

When Michael was well I could predict everything he would do and everything he would say. I think I said, “I knew you would say that…” a dozen times a day. He was like clockwork with everything. He was not a surprise. Ever. He was the most dependable and loving and wonderful person I’ve ever known. And I could predict that it would be there, strong and steady, every single day. He was never odd or moody or do things that was unlike him. He had ADHD and sometimes I could predict the behavior of that (ADHD is a thing unto itself) but even with ADHD I knew what he would do and not do (ADHD people are fairly predictable). It was nice to know what he would and would not do. I would know how he would react to anything.

He rarely got mad and never stayed mad because he would forget what he was mad at (that was a benefit of ADHD). One time when we were first married I was in the bedroom reading on a Saturday afternoon and all 5 kids were home. The kids did something…I don’t know what…and he came into the room like a man on a mission…definitely unhappy. He came in and said, “HON!” in sort of an angry voice, that he was about to tell me what had happened. I braced myself for some kind of argument based on his tone of voice.

As he came into the bedroom he spied something on the dresser and said, in a normal curious voice, “Oh, when did you get this?” I said the other day and he said, “Oh.” I waited a few minutes and he just stood there looking at it. I said, “Was there something you wanted to tell me when you came in here?” He looked up, rolled his eyes around and then looked at me and said, “I have no idea what it was….” and he went back out. That was the beauty side of ADHD. There’s a non-beauty side as anyone who has ever lived with anyone who has it knows. But that was the beauty side.

Last summer when the tumor was affecting his personality (but I didn’t know it was a tumor) he started to get angry about the same thing over and over. For 12 years I could explain something to Michael and he would go, “Oh okay…” and I’d never hear about the issue again. Last summer he was peculiarly repetitive. He kept saying he didn’t like not having any money. I explained to him that I gave him cash each week, he had full use of the American Express card and he never had to worry about bills or making the budget, I did that. Normally if I gave him that explanation, pat and logical, I would have never heard it again. But he repeated this assertion all summer. It was annoying and I got angry. A lot. Over it. It was so un-Michael like to be harping on something over and over again. I knew something was going on, but I didn’t know what.

For 12 years he had been predictable and slowly over the summer he started to behave in ways I hadn’t seen before. I thought he had early Alzheimers I was almost prepared for that…but I wasn’t prepared for this. Now he’s unpredictable almost every single day and strange in ways I have never seen before.

We decided to cut back on the Decadron. Last night I left it out of his nightly meds but he was up at 6 am and turned on all the burners of the stove. He was angry when I came down that no one would cook eggs for him. We don’t have any eggs. In 12 years I’ve never seen him cook eggs. He’ll have some if someone else makes them or we’re out but never have I seen him cook eggs or ask for eggs. Weird.

I gave him his morning meds. He was very upset. By 2 pm he was out of it and like last weekend, I couldn’t rouse him all day. He wet the bed and I couldn’t move him to change him. I just sat next to the bed and cried softly. In sickness and in health. I tried to change him again. It wasn’t successful so I took the wet stuff and pulled it down and covered it with dry stuff. I’m unclear what to do about anything.

I have glimpses of Michael when he is alert. They don’t last that long. When he’s hopped up on steroids he’s either combative or acting like an energetic Alzheimers patient…overly active and dangerous. When he’s not, he’s practically comatose.

I don’t know which one is better. I don’t like either of them and can’t stand to see the man I love reduced to these two states. I swing between the rock and the hard place. I try to get the medication right but it doesn’t seem to work no matter what I do. I want to find the happy medium, the place where I can see my Michael and he can be who he is.

I know him…he has always been exactly who he is. No put ons with this guy. Since Day One he told me exactly who he was and has never been anyone else until last summer. That is special and wonderful and rare.

And it’s gone from me and from him. I want him back for him more than for me. He was the type of person who loved life, who had that inner joy that only comes from someone who simply does what he enjoys and hangs with people he enjoys and can’t be bothered with anything or anyone else.

There were no surprises with him. His tastes and preferences and dictates were few and predictable. He watched Nascar every Sunday. “My race is on…” he would say if we were out somewhere or planning to be out somewhere. He fished as much as he could. “I’m going fishing hon…” he said almost every day he could. He loved Harleys and trucks and cars. He loved pool and one of the first things I did when I started working as a lawyer was buy him a commercial grade pool table. He loved it. He was honest, open and dependable.

I knew who he was and though we have almost nothing in common (except for the Harleys), I knew what would make him happy. It didn’t take a lot. Most times it was something as small as a half of a roast beef sandwich. He would say “Awesome!” when I gave him that half of sandwich. And when he was finished, “Thanks hon, that was good.” And smile and wink at me. So easy to please. So grateful for the smallest things. And if I was running late and couldn’t stop for the sandwich he never made a fuss. Just was happy when it was there. No expectations.

Because he was someone who required so little when he was well, I want to just allow him to be who he is and give him whatever I can now. Most of all I want him to be who he is. I can’t seem to do that. I don’t know the magic formula. I want the magic formula. I want some combination of pills to restore him for a little while. For him and for me.

And I’m lonely. I’m lonely for the man who was my husband for 12 years. I’m lonely for the person I shared things with. When I’m unable to wake him, I’m sad. When he’s knocking around and being argumentative, I’m angry. I don’t know what I feel half the time anymore. I am in some in between world that doesn’t make any sense. I don’t know and I’m not sure.

Sometimes he’s here and sometimes he’s not here. But mostly he’s not.

I miss having him here. Actually I ache for the person who was once here and who is no longer. I wish I could make him comfortable. I can’t imagine that it’s easy for him to bounce back and forth between these two states. I look for glimpses of how he used to be and I occasionally see them. I feel like I’m living for those glimpses. I don’t know. I don’t really know what I feel.

I miss the life I knew before when I was working and came home to share my day with him. I miss sharing my roast beef sandwich and being greeted at the station.

I miss.

That’s all I really know.

Advertisements