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Lots To Think About

We are now at Panera, something I had planned for the morning though it didn’t happen quite the way I intended. That is one of the commonplace occurrences in our lives nowadays. Each day I list the day of the week, the date, and our activities for the day. Except for meeting and other appointment times, I am flexible though I put down a specific time. This morning I put down 10:00 for Panera. Most days Kate isn’t ready before that time. Once in a while, she is. Today was one of those days. It is also an example of how short-term memory affects coordination. Shortly after 8:00, I mentioned that we might go to Panera this morning and have an early lunch before a United Way communications meeting I have at noon. Here is how things turned out.

At 9:15, Kate walked into the kitchen and said, “Well, I think I will work outside for a while.” She sounded as though it was not something she was excited about, just something to pass time. I said, “I thought we were going to Panera.”  She smiled and said, “Oh, I forgot.” Then she turned around to go back to her room to change. She looked happy that we were coming here.

At that point, I was still in my walking clothes and needed to change for the day since we would not be coming back home in time for me to get ready for my meeting at noon. It turned out she got ready very quickly but she had only changed clothes. She had not gotten her iPad that she uses while at Panera or her cup that she also uses for her drink. I also noticed that she didn’t have a sweater, and it is usually a little cool at Panera in the morning. So I gathered all my things as well as these things for her, and we left at 9:35.

All of this occurred without any angst on her part or mine. I have learned to consider these kinds of things normal. She is always ready to do something that she likes. Most of the time Panera fits the bill, especially if it is in the morning. First of all, I think she considers the blueberry muffin to be a treat. Second, it is a comfortable location to pass time. We almost always see people we know.

My intention in writing down this experience is to convey that this is the kind of thing that happens multiple times during a day. They are not horror stories in any way, but they are examples of how the caregiver is always shifting gears and trying to head off or solve a problem. There are so many of them that I find myself slipping.

A good example is a phone call I placed this morning. About a month ago, I took Kate to see a neurologist who said he would need her to get an MRI. We did that a few days after the appointment. I expected to hear from the Doctor the next week that he had the results and wanted to schedule an appointment. I have thought of this a number of times since then but never remembered to call the doctor. It turns out that the doctor has never received the results. His office is going to call today. Then we will schedule a follow up appointment with him. This is the kind of thing that I could and should have taken care of right away, but it somehow just didn’t rise to the top of my list of things to do. That is happening with many of my obligations.

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Everyday Mix-Up

I called Kate in from the yard about 25 minutes ago. She came in and took a shower. A minute ago she called to me. I went into the family room where she was standing. She asked, “You want to eat outside?” I told her I thought we would eat out. Then she told me that she thought I had said something else and indicated she was probably wrong. This is one of the many little things that are not of any great consequence but can be a coordination problem, especially if they occur where there is a time deadline that is approaching.

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Imagining and Other Things

I don’t mention it regularly, but Kate continues to have Deja vu experiences. They tend to be in the same places or situations. She says, “There he/she is again.” as we pass by someone while we are driving. The person is normally walking or running, but sometimes it is a person standing at a bus stop or something similar. By far the most typical experiences occur in restaurants where she very regularly says, “See that family?” or “Notice that man.” Then she will say, “You’ll see him/her/them again.”

She also experiences periodic false memories. This morning she came into the kitchen and said, “I’m ready.” I asked if she wanted to go to Panera, and she did. I told her I wanted to finish writing an email message and then we would go. I finished and then took a few minutes to get our things together (iPads, my computer, cups for drinks, etc.). On this occasion (a rare one), she seemed eager to leave and asked, “I thought you wanted to get me out of here while Libby (our cleaning lady) is here.” I hadn’t even discussed leaving the house or said anything to her about Libby except that she was coming this morning. Ah, it is just now coming together as I write this. Kate was in bed when I returned from my walk shortly after 8:00 this morning. I told her I was back and that Libby would be coming soon. She must have interpreted that to mean I wanted her to get up so that we could go to Panera.

Before leaving Kate brought out a few things to give to Libby. She often does this. This time I noticed that she had put out a pair of her shoes. She saw my look of surprise and asked, “Is something wrong?” I told her that those were shoes we had recently bought. She said, “You told me they were too small.” She took the shoes back to her room.

It also looks like she has come to see me as the person responsible for washing the clothes. Last night she brought some dirty clothes into laundry room and dropped them in the washing machine. I was in the kitchen. She called out to me, “The washing machine is full.” I took this to mean that she was letting me know it was time for me to wash. I said, “I’ll take care of it.” Then I did. She never said anything. To her it must have seemed like an everyday occurrence.

Despite these kinds of things, I still say that we are getting along well under the circumstances. I am trying to keep us busy. We still go to as many movies as we can. The believe the number she will like is smaller than I would want it to be.

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Transitioning

As I have mentioned on a couple of occasions, perhaps more, I have noticed that Kate is looking to me to take charge of things she had controlled in the past. Specifically, I have commented on her willingness (though reluctantly) to receive and even ask for my help finding the right clothes to wear.

There are a couple of recent things that I have not made a point of. Yesterday evening, for example, when we drove into the garage from dinner, she asked in the style of a little child, “Can I go around to the side of the house and work for a little while?” I told her I would be happy for her to do that.

After she came in, she brought a handful of clothes into the kitchen and said, “These are wet. You might want to wash them right now.”

These things are especially striking to me since she is also more frequently commenting on how much I want to control her life. She occasionally refers to me as “Master” in a derogatory sense. And despite the fact that I am constantly thinking of the things that will make her happy or not in an effort to keep her upbeat, she occasionally remarks that “You don’t think of me. If you were the one who is hot, you would see that the air conditioner (in the car) is on right away.” I take these things as part of the transition to a period of greater dependence on me. This is something to which I do not look forward. I treasure the fact that we have been able to enjoy ourselves so much since her diagnosis. I will always be grateful for this time. I would also like to postpone as long as possible the stages that remain ahead.

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Continues To Be Tired

When I hadn’t heard from Kate to pick her up from her PEO meeting, I drove over to the house where the meeting was held. I waited for about 40 minutes Then she came out to the street with two of her friends. I wasn’t sure whether she had arranged for one of them to take her home. I started the car and moved up to where she was entering the street. She got in the car with me as though we had arranged it along. In the car I asked her if she had planned to call me. She said yes. That may have been the case. I’ll never know.

When I had dropped her off earlier, I gave her my business card with my cell number written on it. She was offended. I was just remembering that the last time she was confused.

She seemed tired on the way home. I asked her how the meeting went. She said, “Fine.” She was not talkative. I didn’t push it.

She came home and rested for about an hour before we went for haircuts. She was tired on the way home and rested for another hour before getting up for us to go to dinner and a play at the Bijou. She dressed in something unusually casual. She told me that I had told her she could wear anything she wanted because we wouldn’t see anyone we know. I told her I couldn’t guarantee that and that we were going to Bijou. When I said that, she immediately decided she was too casual and has gone to change.

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Social Withdrawal?

This morning Kate has her monthly PEO meeting. Last night when I mentioned it to her, she groaned. I recall that she has shown less enthusiasm about going to PEO over the past 6-12 months, but this is the first time that her response made it sound like a chore. A few minutes ago I got back from my morning walk. I went into her room to remind her that this was her PEO day. She groaned again saying, “I know.” I said, “You’ve always enjoyed going.” She went on to say that she wasn’t enjoying it the way she used to. Then I went back to my computer to see if this is a day when they have lunch. It turns out that it is. I went back to Kate and told her this was a day when they are having a lunch at the home of the hostess. She said, “That’s even worse.”

For some time I have felt that there has been a change in the way she fits in with the group. Sometimes she is waiting outside for me to pick her up. Typically she would remain in the house socializing until I arrived. She also hasn’t appeared to have enjoyed the meeting. They have taken in several new members in the past few years. They have also lost a few that she really liked. I suspect Kate is feeling like she is a stranger in her club. She doesn’t know the new people, and she can’t remember all the older members. I feel sorry for her. I am especially concerned because it would be the loss of another social contact that could be good for her. On the other hand, if she isn’t enjoying herself, why keep it up.

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Still Tired

We had a nice trip home from Memphis yesterday. It was a full day. We stopped for lunch at a Cracker Barrel west of Nashville. Then we stopped in Nashville to visit with Ellen for a couple of hours. While Kate and Ellen were talking I ran over to the Courtyard Inn where we had stayed last Friday night. I had left my backpack with camera and supply of medications. I also neglected to clean out the closet. I left my belt as well as a sweater set and khaki slacks of Kate’s. As we came into Knoxville, we stopped for dinner. It was just about 7:30 when we got home, 11 hours after leaving Jesse’s house. Kate stayed awake the entire time. She often closes her eyes even if she doesn’t sleep. This time her eyes were awake the whole time.

Today she has been quite tired. This is the day for us to attend the Shepherd’s Center. Our first class begins at 9:00. Kate had gotten up as I came back from a morning walk. She had a glass of apple juice with her medications. Then she went back to bed. At 8:00 am, I went in to let her know we would need to leave in 45 minutes. She was quite groggy. I asked her if she still wanted to go. She did and got up. She came into the kitchen and got some yogurt. Then she went back to her room to get ready. I checked on her at 8:30. She wasn’t ready. She got a little irritated that I was rushing her. I backed off and decided to let her take her time. A few minutes before 9:30, she came into the kitchen where I was working on my computer. I asked if she were ready. She nodded that she was. Knowing that the Holocaust class had started at 9:00 and that it would take 15 minutes for us to get there, I told her the Holocaust class had already begun but that we could take a few minutes to stop by Panera and get a muffin. Then we could catch the other two classes. She was disappointed and said, “That’s the class I really wanted to go to. Was it my fault?” I looked at her. Before I could say anything, she said, “Why didn’t you make me get ready?” I told her I had tried.

We went to Panera and she seemed all right except that she seemed very tired. We sat in on the first class and then went to the second one on classic movies. When we arrived the teacher was not there. We took a seat. A gentleman who had been in the previous class with us sat next to her. I started a conversation with him. Kate got up and left the room. I assumed she was going to the rest room. Shortly after that, the teacher arrived and set up the DVD. Then she started the movie. I got up to check on Kate who hadn’t returned. I looked around in the hallway outside our classroom but didn’t see her. I walked down the hall and found her in a room that had a variety of books and other things. I told her the class was beginning. She came along with me. We went back to our seats. During the class, she appeared to be bored. She was looking around the room most of the time. We were watching The Americanization of Emily starring James Garner and Julie Andrews. We had watched part of it last week. At one point when Julie Andrews appeared on the screen she said, “She reminds me so much of Julie Andrews.” I told her it was Julie. She said, “I thought so.” I tried to imagine what was going through her mind as we watched the film. It must be so mystifying not to be able to follow what’s going on, what the teacher is saying, etc. She is working so hard understand the world around her.

As we were walking to the car, she said, “I really like old movies.” It was obvious that she derived some element of pleasure even though she didn’t understand much of what was happening.

On the way to lunch she closed her eyes. She looked very tired. When we sat down at a booth at the restaurant, she closed her eyes again and leaned her head on her hand with her elbow on the table. She looked so forlorn.

When we left the restaurant, I told her I would take her to Lowe’s. She was pleased. Then we got a call from an electrician who was coming out to the house to fix a light in Kate’s closet; so we went home. I told her I would take her after the electrician left. When he was finished, she was in bed resting. I asked her about Lowe’s. She said she would like to go later. That was over an hour ago. She is still resting.

This makes me think that the trip demanded more of her than I thought. I’ve heard many older people say it takes a while to rest up after their children leave or after a trip. Perhaps this is what Kate is experiencing. Life just wears her out.

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A Few Observations

Kate came downstairs just before 9:00 this morning. She had some yogurt and juice. Then she went back upstairs to rest a bit before we went to  a local coffee shop where we often go in the morning while we are in Memphis. She came back down before 10:30, and we left. While there, she was sleepy and put her head down to rest. It seemed a little early for lunch; so I encouraged her to hold on 15 minutes or so which she did. Then we had a nice lunch at a pizza place by the waterfront. We had a nice lunch. She continued to feel a little tired up until our meal arrived. After eating, Kate said she wanted to go to the rest room. I pointed to the area where it is located. She gave me a scowl indicating she didn’t need my help. I watched as she went in that direction. When she got near, she looked at a sign beside a door. I believe it was the sign for the men’s room. She then turned and was out of sight, but I know the rest room was down that way. When she came back she apparently didn’t see me in the booth where we were eating. She walked right by and spoke with a family with a small child. Then she went toward the front of the restaurant. I finished taking care of the check. When I finished, I got up and saw her standing at the reception stand at the front of the restaurant. Then we walked out. I am sure she lost me and realized the best place was to wait at the front. She was right.

As we drove home, she closed her eyes and rested. When we got back, I told her she would have plenty of time to rest. We came in, and she walked with her iPad into the living room and sat down in a chair. I got my computer and sat with it in a chair near her. In a few minutes, she asked, “Is it all right if I go upstairs to rest.” I told her that would be fine. Then she said, “What if I want to go to sleep?” I told her again that it would be fine. She is so childlike when she does this. It doesn’t happen often, but it sounds as though she is really seeking my permission. I wonder if she does this because she can’t remember plans that we might have coming up and is making sure that her rest doesn’t interfere with whatever is on our agenda.

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Having a Pleasant Stay in Memphis

Yesterday was Mother’s Day. Jesse and her boys drove to Nashville with friends to see Lion King; so Kate and I had the day to ourselves. At first, Kate seemed a little bored in the short time after she woke up. She didn’t get up until 9:00 or so and wasn’t dressed for the day until 10:00. Because it was Mother’s Day we had reservations for lunch. It was jam packed when we arrived, but we were seated right away. We enjoyed our meal. Then we came back to the house where Kate rested for about an hour while I worked on the computer and read the paper.

After that we went to the an old cemetery where they were having special guided tour at 3:00. For some reason Kate had originally said she didn’t want to do the tour, just visit the garden. The tour had just started when we arrived, and she seemed to enjoy it. The cemetery is beautiful, very park-like. When we finished, it was 4:15. Kate expressed interest in eating. That surprised me somewhat because we had finished a big lunch at 1:00. I do know from the past that she often feels like she is hungry long before it would be a normal time to eat. I thought about going someplace just to have something to drink. Then Kevin called to wish Kate a happy Mother’s Day. While we were talking, I drove to the river front. After Kevin’s phone call, it was 4:45; so we went into a restaurant with the intent of getting a light dinner. It turned out we split a prime rib and followed that with a Boxcar Brownie. It was two fudge brownies with three scoops of ice cream. We were stuffed but happy.

We came back to the house where we watched a little TV until Jesse and the boys followed by by their dad. He had flown home after being gone for a month or so.

We got to bed around 10:00. We had had a good day.

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From Memphis

We had a leisurely trip to Memphis where we met Jesse and the boys for a Lacrosse game. Their team lost, but they didn’t seem too disturbed by it. They have been playing 4 years and enjoy it.

Kate has gotten along pretty well but does get confused when we are in different places. Yesterday morning as I was finishing up in the bathroom before running out to Starbucks for coffee and a couple of blueberry muffins for her, I heard the door to the room open. I opened the bathroom door and found that she had gotten out of bed and opened the front door looking for a bathroom. I told her she could come in (to the bathroom). She said, “That’s all right; I’ll just go to another bathroom.” She obviously thought she was at home.

I won’t take this time for a serious discussion of how I am adapting as Kate’s condition worsens. I will only say that I believe I am letting a number of things slip that are a result of trying to think of so many things in connection with Kate as well as my own obligations. On this trip I left my backpack with my camera and backup medications in the hotel room in Nashville along with some of Kate’s clothes and my black belt. Fortunately, they found the backpack. I will pick it up as we pass through Nashville on Tuesday. I made a subsequent call about the things in the closet, but I haven’t checked back to see if they found them. I am optimistic that they did since they found the backpack. We haven’t come close to the situation described in the 36-Hour Day, but I can easily see how one can feel there are not enough hours in the day to do it all.