Yesterday’s Roller Coaster Ride

One week ago today, Kate had her most difficult day. Yesterday was another day, the third in a week, that Kate has experienced similar symptoms. She was very tired, confused, and troubled/sad. She was smiling when I got her up. I helped her dress without a problem.

Everything was fine until we started to leave for lunch. I walked ahead of her from the bedroom toward the kitchen. She was coming out of the bathroom and didn’t see where I had gone and called to me. I turned around and went back. She was frightened. She said, “I know you wouldn’t leave me, but I didn’t know where you were.” That set the tone for getting to the car for lunch as well as leaving the restaurant and getting in the car there. She was simply frightened but didn’t know why. As she had done the day before, she said, “Help me. Help me.” as she got in the car. She got along well at lunch.

The worst time was during the afternoon after she had been resting for almost two hours. After that, I suggested that I read to her. That appealed to her, and I read a little from Charlotte’s Web. Her eyes were open, but it didn’t appear that she was paying attention. I stopped and asked if she was enjoying my reading to her. She seemed to be in a trance. I told her I would stop if she wanted me to. When she didn’t respond, I said in a louder voice, “Can you hear me?” Although she had her eyes open, she responded as though I had waked her from a deep sleep. Then I repeated my questions. She didn’t want me to read. She was tired and wanted to rest.

I agreed to that and remained in my chair close to her recliner. She became talkative but was delusional. I told her she looked frightened. She said she was. I asked if she could tell me why. She said, “I don’t know.” I told her I would like to help her. She said, “They want to kill me.” I asked who, but she didn’t know. We had just finished a chapter in Charlotte’s Web in which they talked about Zuckerman’s intent to kill Wilbur. I suggested she might have gotten the idea from that. She acted like that might have been a possibility. I feel sure it was.

Once again, she said she was tired. I felt like I should do something to divert her attention to whatever she was afraid of. Instead I let her rest a little while. It wasn’t long before she was talking about the house. It was obvious she didn’t realize we were at home. I shifted gears and told her I would like to show her something and asked her to come with me.

I took her hand and walked her to the living room where I pointed out several things that had come from her parents’ home. She was interested but sad because she said, “I never got to know my parents.” Then she went on to say that they had had a rough life and grew up poor. She also said she couldn’t remember anything about them.

She was most interested in a fresco we had bought in Italy fifteen years ago. It was the first time in the past year or two that I recall her being taken with it, even more so than some of the things that had belonged to her parents. She wanted to sit down on the sofa. Then she began to talk about the room. She said she “liked what they had done to the room.” My reminding her that we bought the fresco did not convince to her that this was our house.

It was very clear, however, that her mood was changing. By the time we got to the dining room, she was quite interested in several other items that had come from her parents home. It wasn’t quite 5:00, but I suggested that we get ready for dinner.

She was a little bit skittish getting in and out of the car and from the car to the restaurant, but she seemed fine otherwise. When we got home, I suggested that we sit together on the sofa in the family room and go through one of her photo books that features a family wedding veil that had been purchased by one of her aunts for her wedding in 1924. She was enraptured.

When we finished, we began a conversation about our marriage and the happy times we have had. It was a touching moment for both of us. Earlier I had made several recordings. I am especially glad that I recorded this one. There is quite a contrast between this conversation and the others. She was happy again.

When we finished, we went back to the bedroom where I put on some YouTube videos and helped her prepare for bed. Everything went smoothly. She was fine, but we had had some rocky moments. It was another successful example of diverting her attention from whatever was bothering her. It also reinforces my previous guesses that when she is passive, her mind wanders. She begins to imagine things that are problematic. Yesterday, it was women who were out to get her. I don’t know how long I’ll be able to divert her. I am glad that I have a number of different things that help – music, photo books, tours around the house, conversations about family and our marriage. I can’t depend on just one to come to the rescue now. The good thing is that it is still possible to turn her around, but it’s getting harder.

I was very disturbed by her rambling during the afternoon and suspect I haven’t seen the last of this. She is entering a new phase of this disease, one I don’t like. When she bounced back, I did as well. We had an especially good time with the photo book, and the day ended on a high note.

Although I feel better now, I believe she has taken a sudden decline. I have read other caregivers accounts of similar declines. In fact, one of those was reported in a Facebook post yesterday. I also know of a former college roommate who took a steep decline and died about a month after Kate and I had been with him and his wife. I know someone else with dementia who died less than six months after I last saw her and thought she was doing quite well. While I am not ready to let her go, I would prefer that she go quickly rather than lingering for years. I have suspected the latter since she currently has no other medical conditions that might shorten her life. That, of course, is beyond my control. I will continue to focus on keeping her happy and secure.