Unpredictability

Yesterday started out early – about 8:30. What was even better is that Kate was cheerful and showed no signs of anxiety. She was quite confused and was especially dependent on me to tell her exactly what to do when she went to the bathroom and then dressed.

Because she was ready so early, we went to Panera for her muffin rather than going directly to lunch. We were there shortly after 9:00 and stayed for an hour before returning home. She was quite tired and immediately lay down on the sofa. It wasn’t long before she was asleep. (I wasn’t surprised. The night before she woke up around 2:00. She was confused about where she was. We talked for almost an hour as I tried to tell her about us and our children. She was awake for a while around 4:00 as well. When I got up at 6:30, she wanted to go to the bathroom. Then she went back to bed until 8:30 when she got up for good.)

About 11:15, she opened her eyes. I thought that was a good sign that she might be ready for lunch. In some ways it was. She let me help her into a sitting position right after I mentioned lunch. Very quickly I realized that she didn’t seem fully awake. She was in more of a fog than she is most mornings. She said, “I don’t know what’s wrong with me.” After she was on her feet, she asked if she could stay at home. I told her I thought she just needed a little time to wake up and might feel better if we went ahead to lunch. She didn’t protest. After we were in the car, she asked again if she could stay home. I reassured her she would feel better when we got to the restaurant.

When we walked in the restaurant, the server had just put our drinks on the table. She walked to us and gave us a hug. As she and Kate broke their embrace, I said, “I think she really appreciates that hug today.” That led the server to give her another hug. This time when they released the hug, Kate started to cry. It was over quickly, but it was a good indication of her emotions for the next couple of hours. Near the end of lunch, she reached out her hand to me and asked me to hold it. I said, “Sometimes it’s just nice to touch someone you know who loves you.” She had tears in her eyes and nodded.

On the way home, she started to whimper and said, “I don’t know why I am crying. I don’t feel sad.” I suggested that sometimes either happy things or sad things can prompt cause us to be teary. I also told her that at our age we begin to recognize that we are much nearer the end of life, and we realize how . . . I hesitated a moment. She said, “How precious?” and I finished the sentence “our time is.”

I didn’t say what else I was thinking. She may feel happy, but I see signs of sadness. I try not to read too much into this, but I know she recognizes that she has problems that are well beyond what is normal. I experience sadness myself when I see her decline. I see my losing a little bit more of her each day. During her attacks of the past week, she has looked like someone in her last days on hospice.

She was very tired after we got home and wanted to rest. She rested the balance of the afternoon. She may have slept a little, but most of the time she was awake with her eyes closed. I suggested we leave for dinner. She asked where we were going. I told her, and she said, “I don’t have any money.” I told her that was no problem. I would pay for it. She said, “Well, I’ll pay you back.” At the time, I thought she must remember that I am her husband, but I didn’t say anything to be sure.

Before leaving the house, she mentioned another two or three times that she didn’t have any money. Each time I assured her that was no problem, but she wanted me to know that she would pay me back. I finally said, “You don’t have to pay me back. We are married. The money belongs to both of us.” She gave me a mildly defiant look and shook her that meant “We are not married.” I didn’t pursue it anymore.

After we arrived at the restaurant, she thanked me for helping her from the car and seating her. I told her I liked caring for her and mentioned that we had been together a long time. She asked how long. That led me into telling her the story of our meeting, our courtship, marriage, and having children. As I did this, she began to recognize me as her husband. She didn’t make any specific reference to things she could recall, but she asked me questions and reacted positively to my answers. She didn’t question anything I said.

I thought that would have cleared things up for the remainder of the day, but I was wrong. She was tired when we got home and wanted to rest again. We decided to go to the bedroom. She wanted to undress, so I took this as a good opportunity to get her ready for bed.

After brushing her teeth, she struggled for more than an hour over what she thought were bugs that get on her body and in-between her teeth. She worked to brush them off and to clean them from her teeth. She kept talking about how smart they are and that they know when you are looking at them. She asked me to look over her body and see if I could find them. I didn’t see anything. She had gotten wet while brushing her teeth and tried to dry herself off. She felt she wasn’t succeeding and was concerned that the bugs (she never referred to them as bugs) liked wet areas. She wanted me to help her get dry. I tried with a towel. Then I got the hair dryer. She felt dry, but she was still concerned about “them.”

All the time this was going on she periodically thanked me for being patient. She actually called me by name several times. At one point, I got the floss and tried to make sure there was nothing between her teeth. I never found anything. Finally, I think she must have gotten tired and quit. She said she wanted something to “read.” I gave her a photo book and her iPad. She chose the iPad, but she never opened it. She continued to pick at her teeth and her fingernails in an effort to get rid of the bugs. Once asleep, she slept until I was getting up at 5:45 this morning. She wanted to go to the bathroom.

She was very confused and frightened. She wanted to know where she was and who I was. I gave her my name and told her she was going to be all right, that I would help her with anything she needed. When I got her back to bed, she was still uneasy. I asked if she would like me to get back in bed with her. She did. I put on some soothing music. We talked a little while and I held her in my arms. Within thirty minutes she was calm. I asked if she was all right. She said she was. I told her I was going to get up unless she needed me. She said that would be fine. She is sleeping now, but I don’t know what lies ahead when she wakes up.

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