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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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Today It Was Hard to Get Going

This morning Kate was still sleeping/resting in bed when I reminded her that this is the morning of our monthly Y breakfast. She seemed very groggy. I told her she did not need to go, but she got up. In a few minutes the called for me. When I got to her, she said, “I don’t have anything to wear.” I gave her 2 pair of black slacks which she immediately took to her room. In a minute or two she came into the kitchen and asked if we were going somewhere this morning. I told her we were going to the Y breakfast. She again said she didn’t have anything to wear. I told her I had given her 2 pair of slacks. She asked where they were. I told her I had given them to her. She got into our bed and said they were probably on the bed in her bedroom. I checked. That is where they were. I gave them to her. In a few minutes, she came back and asked where we were going. I told her again. She told me she thought she would stay home. I told her that would be fine. I reminded her that our housekeeper would be coming around 8:30 and that the Robinsons would be here around 11:15. She groaned and got into the bed again. She asked what she could wear. I told her she had the 2 pair of slacks I have given her and I also had a pair of cream colored slacks we had recently bought. She asked that I put them on a chair in our bedroom.

8:25 pm

When I got home from breakfast she was still in bed. About an hour before the Robinsons were scheduled to arrive, I told her it was time to get up. She asked what she could wear. I got the cream colored slacks and gave them along with a top she had worn for the first time yesterday although we had bought it a year or so ago. It was nice one and still had the tags. When she came out dressed she wasn’t wearing the top I had given her. She couldn’t remember that I had given it to her or where she had put it and asked me to find it. I did so. What disturbed me most about all of this was how upset Kate had gotten. She was just so confused and could see it herself or she wouldn’t have asked for my help with her clothes. What I sense is that when she looks at her clothes, she just sees a lot of “stuff.” Nothing specific jump out at her. It is overwhelming, and she doesn’t know what to do. It is so very sad. I am always hurt to see her like this, and it is getting worse. Clothes have been a central issue for us from way back, but now it is continually leading to greater frustration for her and for me.

As it turned out, the day went well. I haven’t had a chance to communicate with the Robinsons since they left, but I suspect they did not see much if any difference in Kate from the last time we were together. We had a good lunch and good conversation at the restaurant and at home. The day ended beautifully. We had dinner at our favorite Mexican restaurant. When we got home, I asked her if she would like to watch one episode of a BBC series I had recorded. She said she would rather relax, got her iPad, and sat in the family room working puzzles until a few minutes ago.

I can’t remember if I reported that I found her computer late Saturday. I had been considering buying her a new one but decided to make a more thorough search of the house before doing so. I found it in a corner of her room behind a table with the printer on it. I have a hard time believing she had put it there. I think Libby must have done that 2-3 weeks ago. I had thought Kate was simply losing interest in the computer (that may be correct) but now I am wondering if she just didn’t know where it was. I charged it and put it where she would see it. I wanted to see if she had remembered it was missing because she was very disturbed that she might have left it at Panera’s. I haven’t seen her using it since she has had it back. It may be that she is losing interest in it meaning that it is becoming more difficult for her to use.

From my standpoint the big issue we are facing is Kate and her clothes. She is turning to me to help when she can’t find anything to wear, but it is hard to prevent the problem. I knew this was coming, but it is a little sooner than I thought it would be.

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Back Home One Week

Now that we have been home from our cruise a full week, I feel even more strongly that it is easier for me to take care of Kate here than on a big trip like our trip to Switzerland last May or the cruise we just finished. This isn’t because her symptoms are any less. It is because neither of us has to think about as many deadlines. In addition, I think the fact that we are in our own home where there is a certain degree of comfort means less stress for both of us. In some respects this seems obvious. After all at any point in our lives, we find that we have more adjustment to changes while we travel as opposed to staying at home. On the other hand, I had thought that being on a cruise would be easier than it was because we (I) knew (1) the meals were taken care of and (2) that there were opportunities for many diversions to address Kate’s boredom and (3) the ship offered attractive places for us to relax. All of that is true, but her Alzheimer’s has reached the point at which none of these things seems to have great appeal. I have not contacted the cruise line to cancel our trip in May, but I intend to do so this coming week.

Here are a couple of experiences today that illustrate where we are at this point. Each Saturday morning I work on my Sunday school lesson. After taking my morning walk and checking email, I prepared myself to take care of my lesson. As I started, I heard her call for me. I went to the back of the house. She was heading my way dressed in sweat pants that a church friend had given to me because they the legs were too long for him. She also had a sweat shirt on over another shirt. This is the kind of attire that she typically wears when she is outside; so I made the assumption that she was on her way to work in the yard. Then she asked, “Where are we going?” I asked her if she wanted to go someplace. She said she wanted to go to Panera. I told her that would be fine and asked if she wanted to change clothes. She said, “No.” I told her I would need a moment to get ready. She said that would be fine and went outside. When I was ready (in a few minutes), I went outside to ask if she wanted to take her computer as well as her iPad. She said she would; so I went back in the house and got both for her. I also got cups for both of us.

After we had been at Panera for about 10-15 minutes, she said she was ready to go. She hadn’t even gotten her computer and/or iPad out of the case. I told her that would be fine, and we went back home where she immediately started working in the yard. At 12:30, I went out to get her for lunch. She was surprised at the time and said she would be right in. When she hadn’t come in by 12:50, I looked out the kitchen window and saw her sitting down on the ground working in the flower bed along the drive way. I went out again. It appeared that she never remembered I had been out before because she was surprised again at the time of day. She came in 10 minutes later.

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Getting Upset With Me

As we were getting ready for our last dinner on the cruise, Kate got upset with me. She said, “I guess I’ll have to wear my tennis shoes.” She gave me a dirty look. She had given me a clue about this yesterday. She told me that she wanted me to ask her before helping her with anything. She specifically mentioned packing her suitcase and indicated that it was something she was capable of doing. I didn’t know what she was talking about and told her I would try to do better. This afternoon she followed her mention about wearing her tennis shoes to dinner by saying she didn’t know why I took her other shoes out of her suitcase. She told me it was just stupid. Then I understood that this is one of those occasions when she believes I’ve said or done something that I have not said or done. I made no effort to contradict her. It would have been foolish and might even have made her feel bad about herself. The truth is that she only packed her tennis shoes for the trip and no other shoes. That meant that even on the formal nights when she was more formally dressed, she wore her casual (not really tennis) shoes.

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A Pleasant Day at Sea

Today has been a very pleasant day. It is interesting that it comes at a time when I am seriously considering cancelling our May cruise. As I think about it, I don’t see that Kate is enjoying the cruise sufficiently for me to go through what it takes to have a successful trip. I find that I have to constantly keep her in mind all the time. This, of course, is not different than at home. The difference is that I have to coordinate going up and down stairs, ordering meals, handling conversations, seeing that she is properly dressed, and that her hair is combed, clothes cleaned etc. All of these things are simpler at home. I would hesitate to do all that is necessary if I were convinced she is getting sufficient pleasure out of the trip. It is clear that she says she is enjoying the trip, but she seems to get the most pleasure out of resting in our room.

She has had a pretty full day today. We got her something to eat around 9:15. We went to a movie at 10:00. We went to lunch after the movie. After lunch she wanted to rest. About 15 minutes after she got in bed, I discovered that she had a Swedish massage scheduled for 1:30. I got her up for that. She finished around 3:00. She was thirsty; so we went to the Lido for something to drink. Then it was back to our room where she got into bed. She just woke up and is on the iPad now. In another hour, we will go to dinner.

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Last Day of the Cruise

I woke up at 5:25 this morning. Kate also woke up and asked the time. I told her. We both remained in bed. Just before 6:00, I got up to get ready for breakfast. I left the room just before 6:30. Kate asked that I bring her something.

When I got back to the room, she had opened the drapes and was on her iPad in the bed. I turned on the TV and put her breakfast open the table. She got out of bed and ate everything I brought (yogurt, a muffin, smoked salmon, apple juice). The she got right back in the bed. She pulled the covers over her and appears to be going back to sleep.

When I told her earlier that this is the last day of our cruise, she expressed surprise and said it had been a nice trip. She then said she would like to get back to her yard. As she ate her breakfast, she also mentioned getting back to her bed and bathrooms, etc. This follows a comment yesterday that she was going to spend time in the yard when she got home.

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Signs of Being Tired or Bored

Just after 11:30 this morning we went to the Observation Lounge where we spent a little more than an hour. Kate moved even more slowly than she usually does. She looked very tired as though she might fall with every step. She worked jigsaw puzzles on her iPad. I read the New York Times, checked email, and read a portion of a Jon Meachan book on religion in American history.

We went to the Lido for lunch. I pointed out the options. She decided, without much interest, for me to get her some roast chicken. I got that accompanied by mixed vegetables and tomatoes. We had a generous helping of bread pudding for dessert.

From there we went back to the room where she got into bed. I checked email and the day’s printed schedule. Then I thought this might be a good time for me to go to the exercise room. I was up there an hour. When I returned she was still in bed. Now she was working on her iPad. She seemed forlorn. I asked if she were bored. She said she was. I asked if she might like to get out and get some ice cream. She accepted.

We walked up the stairs to the Lido. It took her forever. She seemed even more tired than this morning. I found a seat for her and told her I would get her some ice cream. When she was almost finished, she saw a man walk by with cookies. I asked if she would like some as well. She did. I got them.

I asked if she thought the trip was wearing her out. She was offended and indicated that it did not. I dropped the subject. I had hesitated asking her because I thought that might be her reaction, but periodically I decide I should try that approach. The reality is that she just can’t discuss her condition and doesn’t want to.

She is now back on her iPad while I am writing this post. We have dinner at Canaletto at 6:30. I will probably take her back to the room and then go to the evening’s entertainment, two illusionists.

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Too Tired for Evening Performances

One of the things that Kate and I have enjoyed on previous cruises is the nightly entertainment following dinner. We have now had 5 nights, and she has attended only 1 show. She has just felt too tired. I have not pushed her. I had wanted the trip to be as leisurely as possible. To force her would serve no purpose at all. I still feel comfortable leaving her alone in the cabin. I am not sure that I will feel that way next time (May). If I can’t leave her, I will just remain in the room with her and miss the shows myself.

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First Full Day on Cruise

It has been a reasonably good day today. For me it has been better than for Kate although even my enjoyment of the day has been lessened by her being so tired. I am hoping that is a result of my giving her a Dramamine this morning to prevent seasickness.

Yesterday we had gotten to the port for embarkation just before 1:00 p.m. We quickly learned that the cruise ship had gotten in some five hours late as a result of the Coast Guard’s having told them to help in a search and rescue operation. A boat with at least 10 passengers was missing or in trouble. As dawn came, the Coast Guard let our ship go and started using planes. They ultimately found ten men.

We waited with the other passengers in a hangar-like structure that seemed anything but what you would imagine for people going on a dream cruise. Many, if not most, of us had not eaten lunch. Finally, they brought in cookies, cheese and peanut butter cracker, and other snacks.

We boarded shortly after 4:00. Then we had to go through the safety drill. After that, the ship discovered an electrical problem. We didn’t leave until 9:00 or so. Kate was asleep by the time we left. We are in open seating on this trip. We went to eat at 6:00 and got a table with a couple (father and daughter) from Cincinnati and Maryland.

This morning I got up shortly before seven. I had breakfast. When I came back Kate was getting ready. She had slept almost 11 hours. I continue to notice her need to rest and am trying to see that she gets it on this trip. She wanted some breakfast; so I took her up to the breakfast buffet where we sat with a couple from Cincinnati. They were both interesting people. He was a retired counseling psychologist who had spent a large part of his career as a forensic psychologist working with the FBI and other law enforcement agencies. His specialty was in hypnosis. He had some interesting stories.

We got back to the room at 9:28, and Kate immediately got into bed and pulled the covers over her. We had planned to go to a 10:00 presentation on the shore excursions. She was resting so well at 9:55 that I asked her if she would like to stay or go. She nodded that she wanted to stay.

When I got back, I knew she might be hungry and asked her if she would like to go to a café on the Observation Deck where she could get a bite and something to eat. She seemed very lethargic and walked unusually slowly as we went to the other end (bow) of the ship and up two flights. She seemed a bit in a fog when I was trying to determine what she wanted. She had a Coke and a small piece of lemon cake. She found a place to sit, and I brought the Coke and cake to her. She ate the cake quickly and asked for “another muffin.” I went back and got her a small cupcake. By the time I returned with it, she seemed to be perking up. I had planned to go upstairs and use the treadmill while she worked jigsaw puzzles on her iPad and crossword puzzles. I felt a little uncomfortable leaving her because I thought she might be experiencing seasickness. In a few minutes she seemed to be better. I decided not to go to the exercise room but to walk around the ship instead. After each trip I came back to check on her. That seemed to work. After walking 45 minutes, I went back and got her for lunch.

She seemed in a daze as we looked at the various options in the buffet line. She ultimately got blackened Mahi Mahi and rice, nothing else. I got a salad. When we finished, we went to a movie. It had already started and we could only find single seats. I sat on the front row, she in the back. It was quite warm; so I worried about her comfort the entire movie. I was concerned that she might need to leave, not recall where I was seated, walk out, and get lost. As it turned out, she was warm but had been interested in the movie. She said, “I can’t wait to read the book.” She frequently says this after a movie but never does. In fact, she reads almost nothing.

I am quite interested in seeing how things go tomorrow. We have another day at sea before reaching Sint Maarten day after tomorrow. One of the things I am considering is eating lunch in the dining room. That would make it easier for her and for me. We could simply give our order to the server and he would bring the food to us. I am still thinking about shore excursions. Several of the ones seem interesting, but I don’t want to rush her in getting up in the morning. Most seem to depart at 8:30 or 9:00. Anything before ten seems too early for her. I may try one just as an experiment. If it goes well, I might try another.

She has two symptoms that are of significance at the moment. One is being tired. She needs plenty of rest. To me this seems a bit of a sign of her drifting away. It is sad. The other is an inability to focus. Mostly, I am thinking of visual focus. It is as though she sees a thousand different things in front of her and can’t pick out the thing that she wants (for example, a good item) or that I want to show her. I believe this also involves auditory focus as well. I don’t think she hears a lot of what is said in conversations around her. She just doesn’t notice things that she would noticed in the past.

For example, I bought her a pair of slacks and two tops for the trip. I did this on my own without her and didn’t tell her. I packed them in my suitcase. When I unpacked last night, I hung them in the closet. This morning as she was getting ready to dress, I point out the two tops. She picked one of them to wear today. I didn’t tell her they were new or that I had bought them for her. She acted as though they were clothes she already had. For the first time, I am really seeing more dramatic symptoms of her illness. They are not surprises, but I find it very saddening because her decline has been so gradual that I almost expected it to last forever. Of course, not really.

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Summary Notes on Trip to Texas

We are nearing the end of our trip. Here are a few observations of things that have happened.

Kate has been confused about when and where we are going the entire time. Fortunately, she has not been frustrated or depressed., but she keeps asking me where we are. I know that has been a special problem because we have been going from one place to another visiting family and friends. We flew into Dallas where we visited two childhood friends, one of mine, Carter Owens, and one of hers, Meg Wright. Then we drove to San Angelo where we are stayed two nights with Kate’s brother, Ken, and his wife, Virginia.

From there we went to Lubbock to spend Christmas with our son, Kevin, and his family. Then we drove back to Fort Worth where we visited one of Kate’s cousins and his wife. We also made a day trip to Waco to visit the Magnolia Market that has gotten so much attention on HGTV. Considering all of this travel, it is not too surprising that Kate has been confused.

When she has had the opportunity, and she did almost every day, she has rested in the morning and the afternoon. She has also gone to bed at a decent hour. Only the first night in  San Angelo did she get to bed late as did I. That is a good thing. She has needed her rest.

One afternoon we called Laura Williams, a high school friend of Kate’s. She was uneasy about what to say to Laura when she got on the line. She didn’t want me to leave her alone in the hotel room to make the call to Laura without me. I stayed.

In a number of conversations she asked me to tell a story to others instead of telling it herself. She seems to remember the gist of stories but can’t remember enough details to relate them to others.

One of those stories goes back to the days of our dating. It involves a phone call that Kate’s grandmother took one night. As I recall the story, when the person asked for Kate, her grandmother (a very proper person) said, “She’s not here. She’s at a dinner party at the funeral home.” Recently Kate has been telling it as a call her mother received and that her mother said to the caller, “She’s not here. She’s at the funeral home.” One night at dinner with a former professor of mine she said that her mother received a call for her and her mother said, “She’s not here. She’s gone out of town with Richard to pick up a body.”

One morning in San Angelo before Kate came to the breakfast table, Virginia whispered in my ear that she really felt for me in terms of what we are going through. I told her we had been fortunate so far but that the tough times lay ahead. She nodded in agreement. I know that she is observing Kate’s behavior closely since Ken also has Alzheimer’s having received his diagnosis about three years after Kate.  That is about the same difference in their ages.

During the trip even this afternoon and evening she has expressed some irritation with me. This afternoon it involved shopping at the Magnolia Market in Waco. I told her she needed to set some priorities on what she bought because we were flying home tomorrow and would not have room for a lot of things. She also got annoyed when I was about to reach the checkout counter after waiting a while in line. Kate had wandered around. I saw where she was and called to her to come to me. She was irritated. We have not had a lot of moments like this, but they occur frequently enough for me to notice and comment on this behavior. I am wondering where this will lead.

While the trip has gone well, I am glad that I made the decision to make it. I believe we are likely to visit Lubbock and San Angelo again, but I am less confident about Fort Worth.

I continue to feel confident about our trip to the Caribbean in January and optimistic about the trip to Europe in May and Chautauqua in June-July. I don’t know after that.