I’ve heard other caregivers talk about points on this journey in which their loved ones took a sudden downturn, but Kate’s decline has been very gradual until recently. During the past few weeks, I’ve noticed more changes that occur almost from one day to the next. Yesterday this pattern continued.
It started when I got her up for lunch. She was awake; she just didn’t want to get up. It took the better part of an hour get her to consent. When I walked her to the bathroom, she started shaking. In addition to holding my hand, she grabbed on to my arm with her other hand. She looked frightened just like she did the day before in Nashville. As I did then, I asked if she was afraid. She said she wasn’t. My best guess is that she didn’t know where she was and felt very insecure.
Once she was dressed, I decided to go to a place that is a little farther from home than we usually go. My purpose was to play music she likes in the car and let her begin to feel at ease. That worked, and we had a nice lunch. We had an especially friendly server and joked with him periodically throughout our meal.
When we got home, Kate asked what she could do. I gave the iPad to her and told her she could work her puzzles or look at her photo albums. She chose the iPad. That didn’t last long. She was very tired and asked if she could lie down on the sofa. I told her that would be fine. I let her rest for the next thirty minutes before getting her up for her hair appointment. Unlike the morning, she got up without a problem.
She seemed very needy as we drove away from the house. She said she liked me and liked being with me. She said something similar as we left the hair salon.
Back at the house, she started working puzzles. Very soon she was frustrated and asked me to help her. She looked depressed and was almost in tears. She had reached a point at which she didn’t know what to do. She wanted me to finish her puzzle for her. She asked me to work another. I explained what I was doing with every piece. Then I asked if she would like to work one. She did but wanted me to help her. We tried, but she seemed too tired to think. I said, “I love you and want you to know that I will always be with you.” She said, “I know that, and I need you.” She said she needed a break. I suggested we go to dinner. As she got up from her chair, she said, “You just tell me everything I should do.” This was a very sad moment. Once again, it reveals an awareness of her difficulties, and that is painful for both of us.
On the way, I played music that I knew she would like. That seemed to lift her spirits. We enjoyed our dinner. Near the end, however, she got very sad about the servers. She said she never had to work like that. That got her thinking more broadly about all the people who struggle to make ends meet. She said she grew up taking her life for granted. It is not unusual for her to express such feelings, but she doesn’t usually seem so depressed.
Typically when we arrive at home after dinner, Kate likes to sit in our family and work on the iPad. Last night, she said she was tired and wanted to go to the bedroom. I asked if she would like to watch our DVD of Les Miserables. I thought it would be a good idea because it is our favorite musical. I neglected to take into account the sadness it portrays. It wasn’t long before I could see that she was sad. I asked if she would like to watch something more upbeat. She did. I pulled up a series of segments from Andre Rieu concerts. In the meantime, she decided to go to bed. Fortunately, she sleeps well at night. It wasn’t a good night for me. I was awake at 1:00 and didn’t get back to sleep until after 3:00. I wonder what today will bring.