Where are we?

So since he returned from hospital, he has only really been awake for a day  about once out of four. That gorgeous smile (gorgeous to me and his caregivers) has only briefly appeared.

A couple of days ago the doctor took him off the pain killer, saying it was the most sedative of all his meds.

The first day was wonderful – up all day and smiling and laughing and being present. We danced and danced. Answering to his name. Sort of like in the hospital. “Responsive” i think is the word they use.  I ‎see his eyes are focused, although not necessarily on what i would like!

And that has continued but he has continued to fight desperately to protect himself whenever he needs care – washing, changing, clean clothes. It is all traumatic for everyone, him, the care staff, me. This is not new behaviour.

In the last few months he has developed a strategy, during this desperate fight to protect himself, of spreading his knees so the care aides can’t take his pants down. It is devastatingly funny. It is also in my opinion, brilliant. How in the midst of all this total loss of cognition did he figure that out?

I am secretly proud of him. This is the guy I picked. Not educated, no money, but so damn intelligent.

But this trauma day in day out continues and is basically disgusting. Drugs don’t help. Less drugs don’t help. He is strong and defending himself from any invasion of his body from changing shirts or socks to toileting. The care aides are sometimes hurt although not intentionally. What a way to live, in fear.

After the battle is over, he is usually fine. There are advantages to having zero memory!

But whether he will ever bounce back to his level of enjoyment of life before the pneumonia remains a big and troubling question. I am reluctant and afraid to predict.