Taking stock of where we are

As I mentioned before, my moods change with Kate’s moods and behavior. At the moment, I am in a somewhat sad mood. This relates directly to what I perceive as a shift that Kate is making to the kind of behavior that we commonly associate with someone who has Alzheimer’s. She seems more distant than usual. This is difficult to tell because she has exhibited signs of distance from things going on around her for a long time. It just seems like they are even “deeper” or more distant than in the past. I find this understandable since she has so little short-term memory, her long-term memory is also poor, and she is unable to comprehend so much of what goes on around her (TV, movies, plays, conversation).

My feelings right now are at least partially associated with a couple of things that happened during the week. The first involved my brother Larry. He came to Knoxville last Sunday afternoon. We had dinner together. The next morning we met him at Panera. The three of us talked for a while. Then we came back to the house where Kate remained outside to pull leaves while Larry and I talked. I left to attend Rotary. Larry was preparing to leave for his farm but went outside to chat with Kate before leaving. When I got home after Rotary, I asked her when Larry left. She didn’t know. I probed a bit, but she was unable to tell me anything. She did not appear to remember that he had been here.

The next day we visited our friends the Davises in Nashville before visiting with Ellen. I had told Kate several times over the previous two or three days that we would be going to see the Davises. I reminded her the morning we left. We talked about it in the car as we left. When we arrived at their house, she didn’t know where we were and asked, “What now?” I told her we would go inside and visit with the Davises. She said, “Tell me their names again.” I did. We went inside and talked for about an hour. Then we went to lunch for another hour. When we got in the car to leave, she told me how much she enjoyed the visit. Then she asked me to tell her their names again. A little later she asked, “What is your brother’s name again?”

Today we went to a Live in HD at The Met production of Der Rosenkavalier. This was Rene Fleming’s last Met performance. It was outstanding, but Kate wanted to leave at the end of the first act which we did. I had noticed she seemed bored. She yawned audibly two or three times during the first act. Although she was not very loud, the people in front and in back of us could certainly hear her.

We have now seen quite a few operas. It was the Live in HD productions that really generated her interest in opera. Today it made no difference. I knew that she was tired going in, but I suspect it was more than being tired. It was a complex comic opera. I know she must have been confused and tuned out. I fear this is just the beginning of things to come.

Another Example of Short-Term Memory

After getting home from a Y breakfast and a stop at Lowe’s for plants, I told Kate to let me know if she would like to go to Panera. She indicated she would. I might not have mentioned Panera, but Libby is at the house. We had left for the breakfast before 8:00, and I knew Kate would want to rest. After 15 minutes, Kate came into the kitchen where I was working on the computer. She was hot. I asked again if she would like to go to Panera. She said she just wanted to get cool. I suggested she turn on the fan in the family room. She went into the family room. In a few minutes, I went through the family room and saw that the fan was not on. She was working on her iPad. I turned he fan on for her. I also told her if she wanted to go to Panera that we would want to go soon because it would be time for lunch in a little while. I went back to the kitchen. In a minute, she was ready to go to Panera. I got things together. As we were turning off of Garners Ferry Road, she said, “Surprise.” I said, “You guessed we were going to Panera?” She nodded affirmatively. It was clear that she hadn’t remembered. It was only when she saw where I was turning that we were going to Panera.

Back from Lubbock

We had a smooth trip back home on Wednesday. The only problem we encountered was that Kate left her iPad in the rental car. Unfortunately, we didn’t discover that she didn’t have it until we were already through security and settled in for lunch before our flight. I had what you might call a “false memory” experience. I was sure that I had seen her with it in her hand while we were in the security line. Had I thought about its being left in the car, I would have been less concerned because I would have thought the possibility of getting it back were greater than in the airport. As it turned out, I contacted the TSA at the security check point. They had not seen it. I also spoke with the airport lost and found office. They did not have it either. We got home assuming that we might not get it back. Yesterday morning I got a call from Avis informing me that they had found it. They sent it yesterday for delivery today.

This was a reminder of how important the iPad is to Kate. I was glad that I had mine along. She used it on the trip and continues to use it at home until hers arrives today.

Today is my birthday. Of course, Kate will not be able to remember. I did write it on our daily memo pad that I keep on the island in the kitchen. Every morning I write down all of our obligations including things that I am doing. For example, I write down the time I am going for my walk as well as my time to return, Today is a free day. We don’t have anything on our agenda. I just wrote down. “Richard’s Birthday.” It doesn’t bother me that she doesn’t remember except for its indicating something about the state of her mind. That does sadden me. It is not just that she doesn’t remember. It is when she doesn’t seem to care that is more troublesome for me.

Coordination Issues/Problems

I know I must have previously written about my newly discovered appreciation of short-term memory. When Kate was first diagnosed, she had some difficulty remembering things from one week to the next or sometimes one day to the next. These are not unlike all of us. I think it may have been more of an irritation to Kate than to me.

What was a minor thing then has become a significant issue in coordinating plans. This is something I never thought about until it occurred. Let me give you a couple of examples, one from yesterday afternoon, the other from this morning.

Kate and I went to Lowe’s to buy more plants after we finished lunch yesterday. I was motivated to do this because I knew that today I have an 11:30 meeting of the executive committee at the foundation followed by an afternoon at our Rotary golf tournament where I will be a volunteer for a beverage cart. I thought that would give her something to plant while I am away for about six hours or so.

When we got home, she wanted to go outside to work in the yard. She stayed outside the balance of the afternoon. We normally go to eat around six o’clock. When she hadn’t come in at 5:50, I went outside to let her know the time. I was careful not to rush her. I just asked if she were getting hungry. She said she was. I told her the time and she said she be right in. I went out again at 6:20. Once again, she said she was coming in. Finally, I went out at 6:50 and told her we should probably get ready for dinner. She came in, and I expected her to get ready rather quickly. Sometimes she does when we are not going out for a special evening which calls for something dressier. This was one of those nights when she took a long time. We finally left for dinner at 7:50. We returned home just before nine.

Our son sent me a text right about 6:00, shortly after I had gone outside the first time to let Kate know it was getting time to eat. He wanted to chat by phone concerning a meeting he is going to have this coming Friday with the owners of his company. He is exploring the possibility of his buying the company and wanted to discuss it with me. I responded to his text and told him Kate was coming in, and we would be going to dinner. I indicated I would text him when we got home. At that time I was thinking we would leave for dinner around 6:30 and return home shortly after 7:30. As it turned out, I could have spoken with Kevin at that time, but it was 9:30 before we actually did speak. (I normally go to bed about 9:15.) We didn’t finish until after 10:30.

Normally I would leave for the Y on Monday morning at 6:30 am and get home around nine. I decided not to go to the Y because of how late I got to bed and wanting to be with Kate as much this morning as I could before meeting my obligations of the day. I got up at 5:15 and had breakfast before taking a walk for an hour. I was back at the house by 7:35. Before leaving for my walk, I wrote the daily schedule on the memo board that I keep on the island in the kitchen. I noted the time I would be back from my walk, that we would go to Panera at 9:30, and that I would leave at 11:15 for the balance of the day and where I would be.

When I got back from my walk, Kate was dressed and headed outside to work in the yard. I reminded her that I will be leaving at 11:15 but didn’t stop her from working in the yard. I tried to work things out so that I could keep her busy this morning. Now I wonder if she will want to spend an equal amount of time in the yard this afternoon. If not, she may be left without something to do. That will happen if she puts in her new plants this morning. So far it doesn’t look like she is doing any planting. That is good. All in all this is a good illustration of how hard I work trying to see that things go smoothly for her only to discover that her short-term memory keeps her from going with the plan.

Short-Term Memory

This morning Kate has a PEO meeting. Last night I mentioned it and where it is going to take place. Before she went to sleep (early again), she asked if she could use my computer this morning. I told her she could but wondered if she had a problem with hers. She then said, “I guess I could use mine.” I believe she thought hers was not working. This has happened before.

This morning I reminded her about the meeting. That was early – around 6:00 a.m. At 7:15 after my walk, I told her that she had 2 hours until we leave. Around 8:00, she came into the kitchen dressed in her sweats. I reminded her when we were leaving. She asked, “Where are we going?” I told her. At 8:30, she was still not dressed. I told her I was going to get ready. She told me goodbye. When I told her she was going with me, she asked, “Where are we going?” I told her and reminded her that we would be leaving about 30 minutes. I checked on her at 8:50. She was still not dressed. Once again she had forgotten that she had PEO. Three minutes ago she called to me and came into the family room. She was carrying her laptop and her iPad in her arms. I asked if she thought she would need those. She looked puzzled and asked, “Where are we going?” I told her. She had forgotten yet again.

A Day With Family

Yesterday Kate and I remained at the hotel until shortly after 11:00 when we drove over to Kevin’s. After a rocky start with the bad dream around 5:30 a.m., she rested a while, had a little breakfast, and went back to bed as she often (usually) does. I think it was good for her to get up leisurely in this way. We still had plenty of time to be with Kevin’s family.

We went to Lonestar Cheeseburger Company for hamburgers. We enjoyed ourselves, and I don’t recall anything unusual happening while we were there. We went back to Kevin’s, and Rachel prepared to go out with Heather. Kate went went along. I knew that they were going to a shop where Kate might want to buy something; so I talked privately with Rachel and gave her $40. I thought perhaps Kate wouldn’t think to ask me for money. That would mean she could ask Rachel to pay for what she wanted. I was wrong. Kate did ask me for the money; so I got it back from Rachel without Kate’s knowing.

While they were out shopping, Kevin and I went to Starbucks. I gave him an update on Kate. We discussed the future and Kate, his job, etc. When we returned to the house, the ladies had already finished their shopping. I asked Kate if she had been shopping. She said, “No.” I said something about thinking she was going shopping. She recalled, and said, “”Yes.” I asked if she bought anything. She first said no and then said a couple of things. I learned from Rachel that Kate had spent the $40 I had given her and another $20 she borrowed from Rachel. She said that Kate hadn’t bought anything nice and asked, “”I hope that is all right.” I told her it was and that that is how I look at her purchases from Lowe’s. It is therapy for her.

Later in the afternoon while we were watching TV, Kate got up from the sofa where she had been editing photos on her laptop. She said, “”Excuse me a minute.” She was gone for about an hour. I went upstairs to check on her and told Kevin that she was probably resting. I found her in Brian’s bed resting just as I thought. A short time later she came downstairs.

As we got ready to go out for a Mexican meal, we started to gather our things to take back to the hotel. Kate couldn’t find her shoes. Thinking that she probably took them off before she got into Brian’s bed, I went to his room to look for them. They were beside the bed. I also noticed the things she had bought that afternoon and picked them up. Kate had come upstairs behind me. I gave her the shoes. As we were walking toward the stairs, she asked, “”Where are our things?” I was puzzled and asked what things. Then she said, “”Our room.” I said, “”At the hotel.” She then gave me the customary look of remembering and said, “”Oh, yes.” These types of experiences are becoming more commonplace. It also bothers me because I sense that she is troubled by each occurrence. It is not something she sloughs off. She knows it is a sign of her Alzheimer’s.

This morning as we were about to walk out the door to go to breakfast, she was trying to recognize my taking care of so many things for her and said, “”My P.” Immediately she knew that was not correct and said, “”My M.” Then I jumped in and said, “”M whatever.” She then said, “MM. You take such good care of me.” MM” is what she sometimes calls me. It stands for “My Memory.”

Sad Moment

Yesterday morning shortly after I told Kate it was time to get ready for church, she came to me with an outfit and asked, “Is this all right?” This seems a simple enough question, but viewed in context, it is another sign of her decline. She has been and continues to want to be very independent. She often shows signs of resentment when I make suggestions about what she should wear. She does, periodically, ask my opinion. In this particular instance there was something about the way she asked the question that hit me. It sounded very childlike as though she had no idea of what to wear. I think the fact that she was preparing to dress for church which is such a routine event adds to my sense that she is changing.

As a caregiver, I have to be very sensitive about what to say, when to intervene, when to let her make her own decisions even when I know it may be different from what I believe is appropriate. I am trying very hard to minimize her boredom now. I am spending less time at the office so that I can be with her more. That permits such things as simply coming over to Panera Bread where we are right now. Here is an example.

Today I have a foundation lunch meeting that starts at 11:30. That means I need to get her lunch somewhat earlier than I would do typically when my Rotary club meets at 12:30. For that reason I decided to come home directly from my workout at the Y and take her to Panera where we could both work on our iPads and then get her lunch. Knowing that she often goes outside to work in the yard and that if she did this, we wouldn’t have much time together before I have to leave, I called from the Y to remind her that we were going to Panera. She had forgotten. When I got home, she was waiting in the driveway near the street. When she got in the car, she said, “I didn’t keep you waiting.” This led to a few comments related to her saying that I didn’t give her credit for anything. She then gave me commands as to how to get to Panera’s. She was mimicking the way I do with her. My point in telling the story is that I had simply tried to do something nice for her, but she hadn’t recognized that and, in fact, seemed a little put out with me.

During our time here, she said, “The Olive Tree. That is the name of the restaurant where we ate on Saturday with the Harringtons. She had asked me several times but couldn’t remember the name. Then she said, “Katherine.” That is Mark’s wife. That led to her repeating our address, my cell phone number, as well as the names of several high school friends. She was demonstrating that she still remembers things. This is another sign of her own recognition that she is getting more forgetful and is working hard to compensate (remember). That makes me sad too.

Another Example of Short-Term Memory Lapses

Kate and I were driving away from our house shortly after 10:30 this morning when we saw our next door neighbor walking to her car from the house. She has had significant flood damage from our recent storm; so I asked her how things were going. After she told us, she asked if we were still on for dinner at Casa Bella tomorrow night. We said yes. Then we drove over to Panera for Kate to get some lunch before I went to a luncheon at the foundation.

While we were at Panera, Kate told me she had seen our neighbor this morning and that they were looking forward to going with us to Casa Bella tomorrow night. It is possible that she actually had seen the neighbor earlier; however, I know she had not been out working in the yard this morning. That makes me think she forgot that we were together when we saw her. This is not the first time I have heard her tell me something like this though I think it is the first time I have reported it.

Signs of Distraction, Not Noticing Things

I got home a short time ago from donating platelets. It had been almost 4 hours since I left the house. Kate had been outside working in the flower beds at least 30 minutes before I left. I stopped as I drove in the driveway where she was working and asked if the heater man came while I was gone. It was a dumb question as I knew that he was on the way when I left. In addition, I called the company as I was leaving the Red Cross to give them my credit card information to pay for the services. In other words, I knew that he had been here. When I asked Kate the question, she looked puzzled and said, “I don’t know.” Then she asked me what he was doing. I told her he was here to fix the heater. (We had not had heat since returning from Memphis. The weather had not required heat or cooling until today when it was 38 this morning after 40 degrees the previous morning.) She looked puzzled again and tried to think. I told her I knew that he had come, and that I had talked with the office. She then said, “Yeah, I let him in the back.” This is another example of how faulty her memory can be and/or how little attention she pays to things. I believe both things are happening all the time. The important part of this is helping me try to understand how she must be feeling about things. She must feel less and less a part of things going on all around her. It is a withdrawal from life that I am witnessing.

Some of this keeps her from feeling a sense of anticipation about doing different things. Although I knew she wanted to attend Tina’s granddaughter’s wedding, she expressed very little enthusiasm as the time approached. In fact, I had no sense that she was ever thinking about the wedding except when I mentioned it as I did frequently.

Earlier today it dawned on me that I don’t believe I have mentioned anything (or much) about Kate’s moving things that are mine and putting them in places where I can’t easily find them. This morning I was looking for a box of business envelopes that I bought 6-8 weeks ago. I was replacing some that I used to keep here in a drawer in the kitchen (which subs as my office). They disappeared so I bought a new box. When I opened the drawer, they were not there. I went to Kate and asked if she knew anything about them or where I might look to find them. She had absolutely no recollection of them at all. I went to her office and started looking in places that I thought she might have put them. I opened a draw of a table that is by her chair in her office. I found a stack of envelopes that had disappeared earlier; so I took what I needed. I didn’t even try to explain that I didn’t find the ones that had just disappeared but the earlier ones. I simply said that I had found them. This is just one of a number of instances in which she has moved things that are mine.

Last night was our first meeting of the new year for our music club. Kate had been resting for an hour or so when I reminded her about the meeting. She was very lethargic. It was clear that she was not eager to attend. I asked her if she would like to stay home. She said no. At the social hour after the meeting, she seemed to be alone a good bit, but she did talk with several people including the pianist who performed for us. When we got home she said how much she had enjoyed being there. Fortunately, it appears that she gets some pleasure out of the activity of doing things like this even when she doesn’t want to do them in advance. I have noticed this on quite a few other occasions.

More Signs of Memory Problems

Although we continue to get along reasonably well, there are instances of memory problems that occur throughout the day. For example, we came to Panera to work on our computers this afternoon. We looked for a table with an electrical outlet so that we would have access when our batteries ran out. When Kate’s battery was out she started looking for an outlet. I reminded her that we had one with our table. Then she was bothered by the sun as it began to shift and shine directly on her computer screen. I suggested a couple of chairs with an outlet in between. We went over there. In a few minutes, the sun shifted to where we were sitting. I told Kate to watch a woman at a table about 20 feet across the room from us. There was an outlet under her table. In a few minutes, Kate noticed that the woman was leaving. We picked up our things to move, but Kate didn’t know where to go. I had to point out where we were going.

I normally eat lunch with Kate, but yesterday I had a meeting at 10, 11, then lunch, and then was going to donate platelets at 2:00. For that reason, I went to Panera to get her a sandwich for lunch. I asked her if she wanted me to put it on the island or in the refrigerator. She said the refrigerator. Between lunch and donating platelets, I called home to check on her. I asked her if she had eaten the sandwich. First she said yes. Then she hesitated and sounded frustrated the way she often does when she doesn’t know the answer to a question I have asked. I told her it didn’t matter. When I got home, I noticed that the sandwich was still sitting in the refrigerator. She had obviously forgotten about it. Of course, this is not surprising since so much time had passed since I had told her about it.