December 28, 2023

John came home on Christmas Eve since that's when most of our kids could be together. He was tired, but the day went all right. When I arrived at Crescent Landing I could see him down at the end of the hallway. He was peeing on the floor. Fortunately that meant he wouldn't need to pee for a bit at our house! He did later though, on my new bathroom rug. He made it to the right room - the rug was washable, so not all that bad I guess. Once it was time to head back he was pretty tired and was dozing on the couch. That caused more confusion so it ended up taking 2 of us to get him off the couch and into the car. It was easier getting him out of the car once we arrived at Crescent Landing. The hospice nurse called me the day after Christmas to report that John was really tired again. She suggested a couple changed that make sense, so hopefully that will help. But then last night around 9pm I received a call from the Med Tech saying they'd witness John falling. He'd been pacing around, but fell asleep standing up and then fell down, hitting his head. They'd already called an ambulance and the EMTs were taking him to the ER. I asked if it was too late to stop them, and it was. Danielle got to St Jude pretty quickly, and found that John was already in a bed in the ER, so the EMTs had left. He was alone and confused. I got there a bit later (I was driving home and on the west side of LA when I received the call) and the ER staff was beginning to run a bunch of tests. They ran blood tests, including one to see if he'd had a heart attack, they took a chest Xray, CT scan of his head, an EKG, and flu, RSV and Covid tests. They also wanted to check for a UTI but that involved a catheter so we refused that test. All in all, they poked and prodded, doing due diligence, and found nothing except that John has Influenza A, but no fever. They finally discharged him and called for an ambulence to take him back to Crescent Landing because he was asleep and moving him in my car would have been extremely difficult. We got there after 2am and once he was settled in bed I went home. I understand that the staff at Crescent Landing are following their protocols. But the whole process causes increased confusion for John and must be terrifying. Our goal is to provide him with as much comfort care as possible, so the trip to the ER (the 2nd one in 15 days) is too much for John unless it's truely necessary. Today I spoke with the director at Crescent Landing about my concerns. He agreed to ask the staff to call me when the ambulance arrives so that I can talk to the EMTs about the necessity to take John to the ER. Hopefully I'll be able to limit those trips to when they're really necessary, and save him the agitating and bewildering experience in the ER whenever we can. We also discussed discontinuing the 3rd of the 3 nightly checks that the aides do. The 3rd check occurs around 4:30am and sometimes John wakes up and stays awake from then on. Hopefully he'll be able to sleep longer now without that interruption. We're also going to look for ways to improve his sleep schedule so he sleeps better at night and is more alert during the day. Hopefully he'll recover from the flu quickly and feel stronger as a result. He wasn't realy showing flu symptoms so we're not sure where he's at in the cycle of the flu. Hopefully he's on the tail end. He hasn't had a fever so that's a good sign. And hopefully John, Danielle and I can catch up on our lost sleep tonight!