From time to time, I’ve said I wish my memory would allow me to report more clearly the things that Kate and I experience while “Living with Alzheimer’s.” That has never been truer than the following account of what happened yesterday. The best I can do is to sketch what happened without the full details that would enable you to get a better feeling for what it was like.
It is unusual for Kate to get up during the night, but the day began at 1:00 a.m. when Kate said she wanted to go to the bathroom. We took care of that without any difficulty and returned to bedroom. I don’t think either of us was awake too long after that.
At 5:00, Kate was awake again and said, “What do we do now?” I told her it was early and that it would be good to go back to sleep. I think she did. I know I did and woke up for good about 6:15.
I had just finished combing my hair when she came to the bathroom door. She was looking for something. She had already gone to the hallway and family room just outside our bedroom and turned on the lights. I don’t remember what she said, but she had the impression that guests were coming to the house, and she needed to prepare for them. Typically, when she gets up, she is a little groggy. This time she seemed awake and on a mission.
I suggested that she use the toilet so long as she was there, and she agreed. Then she said, “What now?” I told her it was still early and that going back to bed would be a good idea. She was very compliant, and I got her back to bed. I went back to the bathroom to shave and then got dressed.
I had finished my breakfast and was about to take my walk when I heard her call. I went to the bedroom and found her ready to get up for the day. She was concerned about the guests who were coming and wanted to make sure the house was in order. I got her dressed and invited her to breakfast. I had a fruit muffin left over from our takeout meal the night before and heated it in the microwave for her. Although she said she was interested in joining me for breakfast, it was difficult to get her to the table. It was another example of the passive aggressive response she has given when I wanted her to get up, and she wanted to stay in bed. As she has done in those cases, she hears me but ignores me.
I heated her muffin in the microwave and invited her to the table. She said she was coming, but she didn’t come to the kitchen. Instead, she walked around the house looking over things to see if they were in order. She keeps some of the paper doilies she picks up from one of the restaurants we visit regularly on her dresser in our bedroom. Before leaving the bedroom, she meticulously rearranged them along with a hairbrush. She continued this effort in the family room and kitchen.
It took several requests before she sat down. I was both puzzled and frustrated that she didn’t come right away. Ultimately, she came, but she only ate a portion of her muffin and some sliced peaches.
From the time she got up, she was concerned about being ready for our guests. She didn’t seem to know anything about them. She repeatedly asked me their names and what time they were coming. I told her she had plenty of time as they weren’t coming for two or three hours. She expressed mild initial relief. Then she completely forgot and started her questions again.
Kate was much more talkative, and her aphasia was evident. I had great difficulty understanding much of what she said. That was true the entire day.
When it became clear that she was not going to finish her breakfast, I suggested we spend time together in the family room. I got her to take a seat beside me on the sofa and picked up her “Big Sister” album that her brother had given her two years ago. We spent a long time with it, and the distraction worked beautifully. She forgot about our guests and getting ready for their arrival.
Our daughter called while we were looking through the album. Kate talked a lot, and Jesse was able respond appropriately. By that, I mean that she only made facilitative responses to Kate’s sometime unintelligible comments. That kept Kate going. I was happy because Kate was enjoying herself.
It was soon time for lunch. I wanted something quick and easy and chose the Brunswick stew I had purchased late last week. We had a pleasant lunch, and she wanted to rest. I was surprised she hadn’t rested during the morning because she had gotten less sleep the night before and assumed she would rest a long time.
She didn’t rest long before she seemed wide awake. We spent more time with photo books. She was getting along quite well. I told her I wanted to show her something in the living room. I am beginning to sound like a tour guide, as I take her through all of the items that were in her parents’ home. I don’t think that was the key at all, but she was very moved by everything I showed her. It was a moving experience for her.
When we finished the tour, we sat on the sofa. She was very emotional and said, “I feel so good. I can’t remember having a day so good.” She repeated this with variations for a few minutes. It was a special moment for me as well. We still had time before dinner, and she was tired and wanted to rest.
I took that opportunity to get on my laptop and sit in a chair directly across from the sofa where she was resting. I wanted to write this post. I had a second thought and decided I would send an email to Jesse and Kevin to let them know that we were having such a good day. I also thought that would provide a good start for writing a blog post.
I didn’t get far before Kate was finishing her brief rest. That made me think about getting something for dinner. I told Kate I would be in the kitchen and would call her when it was ready. While I was in the kitchen, she got up and started wandering around the family room. She called to me. (Yes, she used my name and did so most of the day.) I found her attempting to disconnect the router. She had already unplugged the cable that powers her lift chair. I told her not to touch the router and attempted to explain while knowing she could not understand. This was a frustrating moment because I had been heating some bean soup that had overflowed on the stove top.
I went back to the kitchen. She called again. She was working on the router. I reminded her that she should not touch it. I left for the kitchen. As I was cleaning up the mess, she called again. She had forgotten about not touching the router. I reiterated how important it was to stay away from it and suggested she come into the kitchen with me.
She wanted to help me, but I couldn’t figure out anything useful for her to do. She wandered around the kitchen picking up things. I keep a stack of bills and other communication that deserve attention on my desk. She separated those and arrange them on the desk.
She was back in the family room when I put the food on the table and called her to dinner. She said she was coming but didn’t. I went to her and told her the food was ready, and she could join me. I went back to the table, but she didn’t come. I tried another time and she came.
She was very talkative. It began when she look at something across from her and thought it was a person. Some of her comments were addressed to her and some to me. She talked and talked, but she wasn’t eating. Her aphasia was active. I couldn’t understand much of what she said.
I began to think she might have a urinary tract infection (UTI). I called her doctor’s office. No one answered, not even the answering service. I tried to contact the nearest urgent care center. They had closed for the day. I called Virginia, Kate’s brother’s wife. She is a retired pharmacist with a good knowledge of health and medical issues. I wanted advice on how to proceed. She said she would probably go to a 24-hour urgent care center if one were available. I looked and didn’t find one in our area.
I went back to the table where Kate was still sitting quietly in front of her food. I decided to give her a breakfast bar. She was very calm, nothing like she had been minutes before. That made me think it was not a UTI but Alzheimer’s that was causing the problem.
I cleaned up, and we went back to the bedroom where I got her ready for bed. She had a little difficulty knowing what she should do next and understanding what I told her, but that is normal. She was in bed rather quickly, and I put on an Andre Rieu concert from Maastricht. She relaxed and listened to the music. Nothing eventful happened after that. When I got in bed a couple of hours later, she was either awake or I waked her. She was as loving an affectionate as usual.
It was quite a day. Kate was confused and busy all day. I didn’t get my walk. I didn’t check email. I didn’t write a blog post. The possibility of a UTI was disturbing on a Sunday evening. I have often said that when Kate is happy, I am happy. The converse is also true. We had quite a mixture of happy and disturbed yesterday. I was up with her, and I was down with her. On the other hand, a large part of the day was as good a day as it can be including the end of it. I am very grateful for those “Happy Moments.” They offset the difficulties encountered the rest of the day.