Hi everyone. I did not post for the past couple of weeks because things had gotten a bit worse. Michael was in a perpetual fog with some moments of clarity where he knows that he’s completely confused the rest of the time.

One day he put on the shower but never took a shower and hours later I heard the water and the floor and downstairs ceiling was soaked.

One day he was walking around the kitchen, in a circle, and I walked over to him and said, “Is there something I can help you with?” He looked at me. Big, sad, brown eyes. He said, “I don’t want to be like this anymore.”

I said ‘I know’ and gave him a big hug. He just looks so lost when he’s aware of how confused he gets.

My son Nick came down to take him fishing a couple of weeks ago. I said that was GREAT and something he would love, but after spending a lot of time with him, Nick realized it would be dangerous. It’s not easy to redirect him and sometimes he has no idea what is going on.

It was his daughter Theresa’s birthday on November 8th and we kept trying to get him to understand that and call her and he kept thinking she was coming through the door. She lives in Indiana so of course she wasn’t. He said, “I’ll tell her when she gets here. She’ll be here anytime now.”

Most days he’s confused about day and night and stares out the window looking for something. I’ve read that it’s normal for brain tumor patients to do that but sometimes he moves from window to window just looking intently as if something is out there. There’s not.

Some days he’s very unsteady on his feet. He walks around in circles a lot. He stares into space.

The space that exists between us. It seems so real and so unyielding. To me. To him. To both of us.

Other days he’ll practically bound out of bed and I think, “He’s BACK!” and he will be energetic and lively and lucid. He knows what is going on and is funny and sweet. The man I fell in love with. And then he’s gone within a short amount of time.

It starts with a shuffle. When he’s moving his feet across the floor like a Thorazine patient, I know he’s gone again. He always recognizes me but sometimes I think I must seem far away to him or that it feels like one or both of us are underwater.

Sometimes he seems to try to bat the fog away with his hands….as if he can just wade through the fog that envelops his memory, his actions and reactions.

I can’t break through the fog most days. I try to joke with him and he sometimes gets it and sometimes doesn’t. He asks me to sit with him and I do and the next minute he is gone. He sleeps about 20 hours a day.

I went out one afternoon and when I came back he said, “I missed you. Those kids don’t talk to me.” which of course they do but in his fog I’m the only one he can even begin to see, the only one that ever gets through. And I sometimes feel disloyal if I am not here when the fog temporarily lifts and he needs to talk. Or I feel guilty if he says “Come here a minute” and I’m busy doing something.

I was talking to a friend yesterday and said there’s so much I feel that I can’t even begin to process. I am a grief counselor and need to do my work but I can’t even begin to think about how much I miss him or how he will not always be here. I feel that if I even get near it I will scream and scream and never stop screaming.

My ever processing psyche does link him up to my brother Edward who was the only person when I was growing up that I ever felt connected to. When I was adopted and he stayed with our biological mother, I longed for him, pined for him….waited for that connection with someone. Someone I would “click” with. When I looked for my biological family in my early 30s, Edward was gone, having died just a few years early. To this day I still process my grief around him and never having had that family connection…and I sometimes have difficulty getting close with my two remaining brothers.

When I met Michael there was the “click” that I had never experienced with anyone else except for Edward. Of course I tried to stay away from the connection of them in my head for the longest time. But it’s starting to surface…and I want to scream and scream that something so precious and rare in my life would be taken from me once again.

But for now it’s time to go to radiation and give meds and try to penetrate the fog in any way I can.

The time for screaming about the unfairness of it all will have to wait.

For now.

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