As I hopped into bed last night, after a pretty good day, a small voice from the blankets beside me asked, “Who are you?” I looked to see if it was a joke, because “Who are you?” has been a joke/defense that Don has used for years, ever since diagnosis. But no, this time it was serious. I explained that I lived with him as his wife. A blank stare was my only response. I went into the bathroom, hoping that things would “reset” if we started over.
No such luck. My introduction and explanations were met with more blank and slightly suspicious stares. Finally I said, “Well, I don’t have anywhere else to sleep tonight. Do you mind if I just lay down beside you?”
This was greeted by a reluctant, “I guess that’s all right,” and he turned away and went to sleep. I lay awake most of the night, wondering what the morning would bring.
The next morning was very normal and he knew who I was, except he had no idea what my name was. Interesting.
Overall, the last two weeks since the doctor lowered the dose of donepezil, as part of taking him off it altogether, have been a major improvement. No major blowouts, and much less anxious repetition. I can even clank a pot in the kitchen without him rushing to ask, Are you hurt? Now he asks, Is everything all right? indicating less ominous dread. He is however, still convinced that something mysterious is going to come out of the clouds and kill us all, but is resigned that there is nothing we can do about it.
All the caregivers are reporting better times, sometimes even enjoyable times, and the few blow outs have been minor and quickly averted, sometimes with a small extra bit of quetiapine.
We are not walking on eggshells anymore, so the stress levels are going down. But there is still an underlying madness, a delusional anger that sometimes suddenly pokes through. One caregiver describes it as just as if something “flipped” out of nowhere. He can be fine, sunny, even enjoying himself one moment and the next, scowling and irritated, potentially ready to blow.