It’s that time again — NancyCamp Christmas. I have a calendar of activities for the children — a variety of seasonal events that we’ll do together. In the summer we went to museums, did art projects, took boat, train and taxi rides, looked at bugs, dinosaurs, and snakes, and went to concerts and plays. Now our Christmas schedule is different. While Jon stays with Bo, Justin and Victoria and I will go out together every Saturday and Sunday — even a couple of evenings.
The fun began last Friday evening when the whole family rode around looking at Christmas lights. Bo was in the front seat beside Jon, not really sure what we were doing but in good spirits. Jon turned the Christmas carols up loud and Bo began to hum and tap his hand to the music. It was a great time — a carload of Christmas spirit.
On Saturday I took the kids to Philadelphia to visit the Dickens Village and traditional light show at Macy’s, then the light show at the Comcast Building. In between? Subway sandwiches and taxis because it was raining. (They like taxis.) On Sunday we had tickets to see “A Christmas Carol” at the Walnut Street Theater.
Jon, of course, was home with Bo, who unfortunately developed a respiratory infection and has had a particularly bad week. In fact, when his hospice nurse came today, she was quite shocked to see his severe decline in just one week. He is shuffling, off-balance, listing to one side, wants to put his head down, speaks little — often gibberish — and is so weak he can hardly go from one chair to another. He falls asleep as soon as he sits, and has to be fed much of his meals. Is it the infection or is it sudden end-stage decline? We wonder and compare this to the decline several months ago when he was hospitalized. Ronnie made changes in his medicine and we’ll see what happens in a week.
At the same time, Bo has begun serious sundowning — not sleeping at night, anxious and unable to stop his mind, moving from one thing to another, unable to be still in bed. I was up with him all night several nights in a row, so last night Jon stayed up, finally getting him to sleep about 5:30 this morning, while I slept in the guest room. It’s a scenario I hadn’t really planned for. He’s been a good sleeper and I hoped that by keeping him on a schedule we could stave off sundowning. We tried medications but they had the reverse effect from what was needed. I’m so afraid that this is a permanent change and I need to think through how we’ll handle it. Will I hire more help to stay at night?
Tomorrow will be another good day with Justin and Victoria. We begin at 10 with a recital at Settlement Music School, then we’re going to the Cherry Hill Mall so they can shop for their parents and one another, and tomorrow night we’ll get dressed up to go to a dance showcase at a nearby ballroom where I’ll introduce them to “my world.” A lot of children will be in the show so it should be fun.
But what will Bo’s day be like? Will his decline continue?