On Wednesday we reduced H's midazolam from 25mg to 20mg, and on Thursday morning, after a difficult night, the nurse was very keen to increase it again but I refused. On Thursday night for the first time for over a week we weren't given a "hospice-at-home" nurse: I don't believe that's because of the disagreement, but I couldn't help considering the possibility. H didn't sleep at all, so nor did I very much. I consulted three of H's colleagues none of whom was against increasing the dose again, so now it's back to 25mg and we've got a nurse again tonight. The lead nurse from hospice at home came to visit this morning, and suggested that we should raise the dose further: she says that when patients are relaxed enough at night they often have moments of increased clarity during the day. I'm sceptical about that.
This afternoon I noticed that H's drugs line had more bubbles in it than usual. I watched it until the motor fired: the bubbles didn't move and a drop of syringe contents leaked from the top of the line. So I suppose H had been getting no drugs since the syringe was refilled hours earlier. I phoned for a nurse who came and sorted it out. Later, H was in some pain, and also unusually lucid: I don't think that's a coincidence. It seems to me that it might be best to reduce the dose of sedative for a few hours during the day and increase it at night, but no one's offering that option.
The lead nurse also told me that it's common for terminal patients to have a few days when they're more vigorous before the final decline. She advised me to talk to I&S about how little time there may be left.
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