Earlier this summer I noticed that sometimes when I spoke to Michael he would look right through me…not only as if I hadn’t said anything but if I wasn’t even there. At one point I became angry and even then he didn’t respond. Something seemed wrong.

For someone who was always moving fast, he suddenly slowed down. He would dawdle in the middle of Manhattan. He would forget his belt and his pants would start falling down out in public. He would zone out with the boys on the golf course. We had all noticed it. Was it early alzheimers? My son Michael and I had talked about it the night before Michael’s seizure. The boys were telling me to take him to a doctor. And I kept asking, “And say what? He seems forgetful?” But I had intended to speak to him about it.

After Michael’s seizure, the ER doctor asked me if I noticed anything unusual and I told him about this. He asked when I had noticed it and I said since the end of June.

It was the middle of September. He wanted to know why I hadn’t had him checked out. For zoning out? For this nebulous spaced out thing he was doing? The man has extreme ADHD and I didn’t know if this was it getting worse. I told the doctor I had considered it might be early Alzheimers. And you didn’t get him to a doctor? he said. “For walking slower? For sometimes forgetting his belt? For zoning out?” I could just see me saying to Michael, “get in the car, we’re going to the doctor, you keep forgetting your belt.” He would have laughed himself off the couch.

Michael is an independent man who rarely, if ever, went to the doctor. He used to joke that doctors were for people who took care of themselves. And what doctor is going to order a CT scan or MRI (and have it approved by insurance) for occasional zoning and forgetfulness? Getting him in the car would be one hurdle. Getting a doctor to take it seriously would have been another.

After it seemed like the doctor was accusing me of not getting the help he needed, I broke down. All my kids and my friends assured me that no one was getting Michael into the doctor if he didn’t want to go. And we all knew he wouldn’t have gone.

But when he was in the hospital, the nurses would yell at him to get up, get dressed, take this pill and take that pill, eat this, do this and that. They treated him like a 3 year old. And his response was to “go dead” like he didn’t hear them. He wouldn’t respond and he wouldn’t move. It was his rebellion. And I’ve never seen him like that. He is not passive aggressive which is what “going dead” is. It truly upset me when I saw it.

The physical therapist thought he doesn’t do it on purpose. She thinks it’s the brain tumor. Or maybe it’s a little of both. Maybe the brain tumor makes it easier for him to go dead like that.

Now he does it to me when he doesn’t want to get up. When we’re out in public I can see he needs help and he needs guidance but when he’s home he seems pretty normal to me. But then it’s time to go to bed and he doesn’t want to go. So he stays on the couch looking through me. And sometimes I yell and sometimes I pull his arm and he doesn’t like it.

He told me today that he’s sorry but he’s still upset over all the bossy nurses and doesn’t want me bossing him around. He felt embarrassed and humiliated and stripped of his dignity in the hospital and doesn’t want to feel that in his own home. He doesn’t like to be told by anyone it’s time to go to bed. He doesn’t like that I can’t trust him on the couch, that he won’t have a seizure. He likes to watch TV late into the night and always stayed on the couch when I would go to bed.

Those days are over.

And I feel frustrated that I have to make him come upstairs, and frustrated that he “goes dead” on me and frustrated that I yell.

At the end of a long day caring for him and making sure he gets fed and gets his meds and has everything that he needs, I don’t want to fight with him. We never had a power struggle like this, EVER, in our relationship. And I hate it.

I don’t want to spend his final months ever being upset with him but I can’t move him when he does that and I can’t get to bed and get my rest, which I need. I hate it.

And I hate the brain tumor.

More each day.

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