OK, We tried everything the doctor, staff, and daycare prescribed. Nothing fixed it, and everything we tried made it worse. We have been fighting sundowners and hallucinations for months now (sound familiar?)
We have even recently started looking into LTC that doesn't throw the pharmacy at them, because his Dr said it was time to start looking.
I just recently read about a nightcare program in NY that caters to their changed sleeping cycle. The Dr said it was a horrible idea and that his hallucinations, irritability, etc.. would just get worse by allowing him to sleep during the day and stay up nights...... We tried it anyway!
We got him prepared for bed as soon as he looked drowsy, let him sleep as long as he wanted. No matter what time it was.
Gave him some things to do by himself at night when he was awake and remain safe.
Took away the wheelchair so he wouldn't be wandering around, and stay in bed.
logged his sleep hours via nannycam.
He has gone from 4-5 total sleep hours per day to 9 hrs total sleep for two days now.
Improved mood, cognition, alertness, everything! It's like it turned back the clock on 3 years of decline!!!, and no Shadow creatures are attacking him at night now!!!!
We have adjusted our schedule to cater to his sleep pattern to assure he gets the sleep he needs everyday. We decided that Daycare is not worth cancelling as it provides a valuable service to our schedule, but set his bedtime for 6pm right after dinner and shower following daycare (he is sleepy about that time anyway).
Dropping his sleep aid (Melatonin) as he is already sleepy anyway.
He should wake about 1-2am, have plenty of things he can do by himself alone while we sleep, I get up about that time on a bathroom run anyway, great time to change him and get him set up.
Let him take a pre-daycare nap at sunup, and start the cycle again.
He gets his rest, we get ours, and no more little creatures attacking him at night and waking up the whole house.
And he can live at home for many more years to come hopefully.
I'm not sure why Doctors don't tell you that the hallucinations are most likely a result of sleep deprivation, had we have known we would have done this months ago.