Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.