November 23, 2023

John has been at Crescent Landing for a month now. He's adjusted to it pretty well, and is part of the rhythm of the place. He's moving to a single room soon, but I don't have a date yet. I'll need to buy a few more things to make the larger space homey. The room is the same size, but he'll have it all to himself. The room has doors instead of a window and I like that. We can open the door to walk into the garden, or just to get fresh air quickly. Today is Thanksgiving and I've been off work all week so I've been able to visit John at different times of the day. I brought him home for family events today as well as 2 days ago. The other day I brought him home for the evening. I think that was a mistake. He was very tired, more so as the evening progressed. As usual he paced around the whole time, but by the end of the evening he was leaning against the railing on the staircase and was practically asleep standing up. I tried to get him to sit down but he refused. He also refused to walk to the car. It took 4 of us, and about 15 minutes, to walk him to the car and get him inside. He wasn't upset about leaving, he was simply tired, confused, and unwilling to comply. Once we arrived at CL he stepped out of the car without issue, but then walked very slowly, with his eyes closed, back to his room. Today was more successful. He was home for about 6 hours, during the day, and he was more alert. He paced around all day and I had to move the appetizers out of his reach so he didn't feast on them continually! At one point I realized he was out of sight so his brother and I quickly went to look for him. His brother found him just in time - John was about to pee in Ben's bedroom. At CL John pee's wherever he chooses. Sometimes he'll use the toilet. Sometimes he'll pee (and occassionally poop) in the garden, or in another person's room, or on his shoes which are set to the side in his room. I'm not sure how to go about bringing him home for family events. He doesn't seem to respond to it in any way. And people really don't try to engage with him too much - granted it's not easy because he doesn't understand what is happening especially when there's a lot going on in the house. I guess we just continue to try a few things and see what might work best. It's difficult for me to be vigilant and take good care of him while I'm hosting something at our house, and trying to visit with everyone. So it's a lot, but it's nice to have him at home with us.

November 12, 2023

It seems we are through the worst of the transition period. John is sleeping better now, and I think he's more comfortable with the caregivers there, and they with him. He paces around whenever he's awake, so it's a lot. Danielle said yesterday after a visit that she thought he was the best she'd seen him. He continued leaning to the left like the Leaning Tower of Pisa for about 2 weeks, but that seems to be resolved now. For the past week his feet, but mostly his left foot, have been swollen. The palliative care nurse believes it is Edema, so they're treating him for that, and trying to get him to put his feet up as much as possible. That's nearly impossible though because he's up pacing around so much of the time. There doesn't seem to be a good explanation for the left leaning or the swollen feet, so heck if I know. At least both are better now. The pallitative care staff have checked on him regularly and call me often with updates. I continue to feel the need to keep very close tabs on John, so I've visited him every day except one (when I went out of town for a girls trip - a beautiful weekend of wine tasting in Paso Robles). Maybe I'm having trouble giving up a little control. Or maybe I'm being vigilant. It's probably somewhere in between. I still feel the weight of responsibility for him and worry about him constantly. I've gone at different times of the day to see how things are. The staff are patient and positive with the residents. They told me they'll have a private room available for John soon. He won't care much about that, but it'll be a little nicer to visit when he has a room of his own. They keep the residents in the common area most of the time though - people are not hanging out in their rooms by themselves. But I take him to his room each time to check on things, take care of some grooming, and then before I leave we go back to the common area. It's also good to walk around the garden with him since the weather has been nice.