Symptoms

It has now been an hour since I went outside to get Kate. About 20 minutes ago, she had gotten out of the shower and was walking into our bedroom in her robe. I had thought that she would be dressed for dinner. I went into the bedroom. She said, “I did what you told me.” I said, “What was that?” She said, “To come in here.” (As you may have guessed, I hadn’t given her any instructions about what she was to do. I only brought her in so that we could get a shower and go to dinner.) She then picked up her iPad and asked (by motions, not words) if she could get in bed and work on it. I said that would be fine and that I would check in a few minutes to see if she was ready to eat. I have now done that, and she went back to her room to dress. My expectation is that she will return dressed and ready to go out. Will I be right?

Symptoms

Yesterday our daughter Jesse called to coordinate plans for a couple of trips to see her and her family. Kate had just taken a shower and was getting dressed. I put the phone on speaker and walked back to her room. I told her it was Jesse on the phone. She said, “”Hi, Jesse.” Then she waved me out so that she could finish dressing. When she was ready, she walked by me as I was talking. Then she went outside to pull leaves. Before her Alzheimer’s, she would never have done this. She would have eagerly gotten to the phone and enjoyed a conversation with her daughter

I called Kate’s doctor’s office shortly after 9:00 this morning. I left a message for the nurse. Her doctor was out of the office today. They said the nurse would get back to me. I then called the agency that provides the sitter who was to have been here at noon. I let them know that we might have to go to a doctor’s appointment and that we might not need a sitter. They understood.

After getting up a second time this morning, Kate got dressed to go out for her muffin. She was moving very slowly and acted the same way she had been a good bit of the past 3 days, but we went ahead to Panera. We stayed for about an hour. When we got home, she went back to bed. At noon, I asked if she felt like eating. She said no. This was the first time she had not wanted to eat at mealtime during her illness. Before I ran out to get a sandwich, I received a call from the doctor’s nurse saying we could see another doctor at 1:30. I told her we would be there

Kate got up when I told her we had an appointment, but she was moving very slowly, once again walking as though she was very unsure of herself. They took us in right away and took her vital signs. Everything looked fine. The doctor asked for me to give an account of what had been going on. I did. She said they wanted to draw blood and get a urine sample and that the results would be available tomorrow

When we left, Kate seemed much better. We stopped by Panera to get her a sandwich and stayed an hour. As we reached the house, she asked, “What can I do?” I told her that she could work in the yard. Then she asked me, “Where?” I told her she could start in the back if she wanted to. Then we both came inside a few minutes. Then she asked, “Now what?” Before I could answer, she asked, “”My room or the bedroom?” I assumed she had decided to work on her iPad inside.” I told her that I thought she had said she wanted to work outside. She said, “”I would like to.” She was outside for about an hour before I went out to see if she wanted to get ready for dinner. She said she was just about to come inside anyway. When she is ready, we will go to Chalupas for dinner.

Still Not Feeling Well

About 11:30 yesterday morning, I checked to see if Kate wanted some lunch, she indicated that she did. She got up from bed pretty quickly but was moving very slowly and showed no improvement since getting up this morning. We went to our usual place which is about 20 minutes from home. She was very quiet on the way, during lunch, and returning home. As soon as she walked inside, she got into bed again. She stayed there for about an hour, perhaps a little longer. Then she came into the family room where I was seated and asked, “”What can I do?” Before I could answer, she said, “”I could go around front.” It was stated like a question. I told her I thought that might be good therapy. I really meant it as it was the first time since Friday that she had shown any interest in going outside.

She remained outside for about an hour. Then she came in to take a shower. She appeared normal. I said something to her about being glad to see her feeling fine again. She acted as though she had never been sick. When she had dressed, she was ready to get out of the house. We went to Panera for another hour before going to dinner. She was quiet, but she ate well. Upon our arrival home, she put on a night gown and got into bed with her iPad.

At 8:00, she said, “”Good night.” I said I would go in the other room, but she wanted me to stay with her. I did for the next hour or so. Then I went into the family room and reviewed Memory People posts on Facebook. When I went to bed, she woke up and sounded normal. I told her I felt better now. She didn’t understand. I told her that she had felt sick for a couple of days. She didn’t remember.

Now I feel relieved. I was really worried that we might be facing something more problematic. This doesn’t necessarily mean that all is well. A few minutes ago, she came into the kitchen to get some juice and yogurt. She gave me quite a scowl. This is not entirely unusual. She is this way in the morning periodically. I tried to speak to her, but she didn’t want to engage in conversation. She has gone back to the bedroom. I’ll give her time to get going in her own time. It is common for her to go back to sleep after getting up for her juice and yogurt.

Symptoms/Markers

I have continued to monitor Kate’s behavior with an effort to determine how much is related to her Alzheimer’s and how much, if any, is related to her having a specific illness. This decision is clearly made more difficult by her Alzheimer’s. She is unable to explain how she feels except to say that she feels tired. After receiving an email from her doctor Friday afternoon and watching her yesterday, I began to think it is an infection of some type. The fact that she acted like she was going to throw up and did actual spit up some of her pizza Friday night reinforced this thinking.

Yesterday morning I was encouraged when she first got up. She got dressed reasonably early and was ready to go to Panera by 9:00. We were there about an hour before she wanted to go home. I did notice that she didn’t finish her muffin, the first time that has ever happened. At home, she went back to bed, and I let her rest over an hour before if she would like to go to lunch. She did. We went to Bluefish for lunch. She was quiet on the way out and the way back. She said nothing while there except a comment or two to the server. When we got home from lunch, she went right back to bed. Similarly, when we got home from dinner, she got ready for bed. She woke up at midnight and had difficulty going back to sleep. I suspect this is a result of having slept so much over the previous 24-36 hours.

She has seemed unsure of herself when walking. She walks very slowly, significantly slower than usual. I thought she might feel unsteady because she was happy to grab my hand and she would reach for something to steady herself. When we got home from dinner last night, she balanced herself by keeping her hand on the car until she was close to the door to the house. I asked if she felt unsteady. She said no that she was just tired.

Yesterday morning I asked her if she wanted to see a movie in the afternoon, Victoria and Abdul. She did. I bought tickets online before we went to lunch. As we returned home from lunch, I asked again if she felt up to it. She said she did. When it was time to leave, I asked again if she wanted to go. Once again she confirmed her interest, and we went. During the first part of the movie, she looked at me with a smile on her face that suggested she was enjoying the movie. She wasn’‘t smiling when it ended. I asked specifically if she had enjoyed it. She nodded that she hadn’t. I didn’t pursue any discussion, and she didn’t want to talk.

This experience reinforces what I had already been thinking. Movies are becoming a thing of the past for us. I think this particular movie had a good shot at being one she would like. I now have a string of failed attempts at movies going back at least to the spring. I am not saying I won’t try again, but I will be increasingly careful in selecting one.

When we came home from the movie, she went back to bed. About an hour later, I asked if she wanted something to eat. She did. We went to one of our regular places. She did a respectable job of eating her dinner. I didn’t observe any notable differences in how much she ate.

At dinner, she reached across the table twice to take a drink my iced tea. I noticed that she hadn’t drunk any of her Dr. Pepper. The second time I asked her if the Dr. Pepper was bad. She said, “”Oh, I forgot.” While I don’t remember her doing exactly this same thing before, for a long time she has not noticed things that are right in front of her.

She got up early to go to the bathroom. I asked how she was feeling. She indicated her stomach felt strange but that she was not feeling any pain. I gave her some Tums to see if that might help. She went back to sleep.

She was ready for Panera and her muffin at 9:00. She was still walking slowly and didn’t look sure of herself. I asked how she felt. She said, “”Hungry.” We went to Panera and stayed an hour before she asked if we could go home. For the second day in a row, she had not finished her muffin. I asked about that, and she said she said she was full. That made me think again about her stomach.

She has been resting since we got home. I will soon check to see if she wants any lunch.

Symptoms/Unusual Behavior/Markers

After the “panic” attacks night before last, Kate slept until 11:05 a.m. when I woke her up. I knew that the sitter was coming at 1:00 and that Kate would need something to eat before she came. It was clear that when she was up that she had not recovered from the night before. She seemed weak. I had planned to take her to Panera for lunch but hesitated because she didn’t seem up to it. I suggested bringing something home for her. She didn’t want that. She wanted to get out of the house.

We drove over to Panera. On the way over, it seemed clear to me that she wasn’t feeling well enough to be out. I told her I was going to take her home. Then I would bring something home. She agreed. I returned home with some soup. I was beginning to think that she had an upset stomach and wanted something that would not be too rough on her stomach. Kate didn’t want the soup.

I arrived home just before the sitter. I hadn’t told Kate the sitter was coming. I just said, “Mary is here.” Kate received her warmly although she was noticeably tired and or weak. She wanted to get out of the house. I suggested that all three of us go to Panera and that Kate ride with Mary and I would drive separately so that I could leave if it seemed appropriate. I got Kate a muffin. The three of us sat at a table for about 15 minutes. Then I came back to the house. It wasn’t long before Kate and Mary came back as well.

Kate was tired and went back to the bedroom and got into bed. I left to run some errands and meet a friend for coffee. When I returned, Mary said that Kate was resting but that she had been outside twice.

After Mary left, Kate wanted to go back to Panera for a while. We stayed there about 45 minutes before she wanted to leave. I asked if she wanted to eat. She did. We normally go out for pizza on Friday night, but I was uneasy about her eating pizza if her stomach was upset. She said she was all right and would like the pizza. We got the pizza. She did fine as far as eating goes, but she continued to look weak and said she was tired.

After getting home, she got right into bed. This would have been before 7:00. She got up around 8:00 and asked, “What now?” I told her it was beginning to get closer to bedtime and that it would good to get her night clothes on. She said okay. I got her a gown. As she was undressing, she raced to the bathroom and spit up in the sink. It appeared that she was going to throw up, but not much came up. When she left the bathroom, she got into bed and is still there. She did get up to go to the bathroom around 6:00 this morning but went back to bed.

I heard from the doctor who said she might have an infection. Yesterday I got her some Tums Smoothies and gave her a couple after she had spit up. Since she had no other occurrences during the night, they may have helped
I intend to let her sleep as long as she wants this morning. When she wakes up I am hoping she feels better.

This whole set of events is something very different from most of the things I have observed over the course of her Alzheimer’s. Yesterday I was wondering if this could be a sudden shift downward in her condition. Right now I am guessing that she really did have something physical that has affected her stomach and that interacted with her mental state which doesn’t permit her to respond in a normal way. She is confused and just knows she doesn’t feel right.

Not Feeling Well

Yesterday afternoon about 3:30, Kate wanted to get out of the house. I decided it was best to go back to Panera because it is close, and we would be able to get back home by 5:00 to get ready for dinner at Casa Bella. After an hour, Kate indicated that she was ready to go home. She seemed a little frustrated. I assumed that she might have had trouble with her puzzles on the iPad. That continues as an issue.

As we were leaving the parking lot, a car turned into the lot right beside us and startled her. I didn’t think much of it. She is often startled by sudden noises or movements. In just a few seconds, I looked over at her and saw that she had a napkin up to her mouth and seemed to be holding back tears. I asked, “What is wrong?” She said in a loud, almost defiant tone, “I don’t know.” Now she was crying but trying to hold it back. Crying has never been something she likes to do. She cried all the way home which, fortunately, is only 4-5 minutes at the most. It was very clear to me that this response was something totally uncharacteristic of her. I got out of the car in the garage and went around to help her. She got out very slowly. She was almost shaking and looked confused and feeble. It was almost as if she were wondering, “What is going on? Where am I?”

We walked back to our bedroom. I noticed that when she looked at me it was as if she didn’t know who I was. I spontaneously said, “Do you recognize me?” That brought an angry response. She said, “Of course I know you.” I didn’t push for any further explanations. I told her she was having a panic attack and it was probably best for her to simply lie down on the bed and relax. Then she sat on the bed and started to undress. As she did, she said she wanted to take a shower. She asked me not to leave her. I helped her into the bathroom and turned on the shower. She got in while I got a towel and waited for her. During the shower, she started to regain her composure and said she was feeling better.

When she got out and had dried herself, she seemed fine. It was then that I told her she seemed better and wondered if going ahead to opera night would make her feel better. She indicated she thought it would.

We had another pleasant evening at Casa Bella or so I thought. When the program was over and we had said our goodbyes, she walked out to the car very slowly. She told me she was very tired and wanted to get to bed right away when we got home. It was 8:35 then.

Before we got home, she began to tear up again. I helped her out of the car when we arrived at home. She held on to me and didn’t want me to let go of her. We walked directly back to the bedroom where she seemed to be frightened. As with the earlier episode, she looked confused and was shaking very slightly. I got her a night gown while she undressed. She wanted me to get into bed with her. I did. She wanted to be held and finally went to sleep.

Shortly after 4:30 a.m., she woke up and appeared to be having another attack. She asked me where the bathroom was. I got up and walked her to the bathroom. When she had finished, I walked her back to the bed. As before, she wanted me to hold her. I did. After a while it appeared that she was asleep; so I pulled away from her. When I did, she pulled me back. I remained that way for another 45 minutes when I got up for breakfast and a short walk. She remained very calm.

When I got back from my walk about 45 minutes had passed. I checked on her. She was still sleeping. She woke up around 8:00 and went to the bathroom. Then she went back to bed. I told her I would be in the kitchen if she needed me. I just went back to check on her. She is sleeping.

This experience leaves me wondering if this is something that might recur today or some other time in the future. Will it get worse? We have been so free of complications during this long, slow transition. I wonder what lies ahead and what we can do about it. Of course, I plan to contact her doctor. I may also check the caregivers forum on the Alzheimer’s Association website and the Memory People page on Facebook. This reminds me of the Alzheimer’s Association help line. That may be something else to explore.

Sad Moment

We’ve had a great time with Kevin over the past few days. We dropped him off at the airport a couple of hours ago. There were several highlights while he was here. One of those was the Knoxville Opera concert on Saturday night. Another was a trip to the zoo yesterday afternoon. We had gone to the zoo in March when Kevin was here with Taylor. Kate had loved it, and I had been looking for a good time to return. It was too hot during most of the summer. The weather cooled off when Kevin came, and I thought it would be worth a try again. It really worked. She was as fascinated with the animals as any child would have been. I will certainly think about another visit to the zoo this fall
After returning from the airport, Kate remained outside. She got a little warm in less than an hour and came inside. It wasn’t long before she came to the kitchen with her iPad and a look of boredom on her face. I said, “You’d like to go someplace.” She nodded. I got my iPad and two cups for drink. We headed for Panera.

As we entered the parking lot, I noticed that she was wearing one brown shoe and one black shoe. I didn’t say anything. Once we were seated, she looked down at her shoes and noticed they didn’t match. She said, “I have one brown and one black shoe.” I told her that would be all right. She looked bothered but didn’t say anything. I watched her for another moment, and she started to cry. I said, “I don’t want you to be bothered. It’s all right.” She pulled herself together, but it was clear to me that it was one of those moments when she realizes that she is changing. It is so sad to watch this. I feel much better when she doesn’t recognize the symptoms.

Morning Confusion

A little earlier Kate was in the bed working on her iPad. I heard her express some frustration and say something about not being able to get this “thing” working. I asked if I could help. Then I walked over to her. She handed the iPad to me. I saw immediately that she was not in her jigsaw puzzle app but in photos instead. I got her back to her puzzles, and she said, “I can’t live without you.” I said, “You don’t have to; I will always be here for you.” I doubt that she can envision what the future holds, but moments like these are full of meaning for me.

Recently I have been struck by the fact that it seems like she has the most trouble with her iPad during the morning, especially while we are at Panera. At other times of the day, for example at night when you might expect her to be worn out, she is able to work on the iPad for long periods of time without needing my help. I wonder if it is just a morning grogginess that is the basis of the morning confusion.

Two More Good Days

Yesterday Kevin arrived for his quarterly visit. We met one of his high school friends and her mother for dinner. Afterwards, we went to a concert sponsored by the Knoxville Opera. It featured music from Porgy and Bess and a number of arias from familiar operas as well as several well-known songs from movies or Broadway shows. The included pieces like “I loves you, Porgy,” “Summertime,” “Somewhere over the Rainbow,” “Nessun Dorma,” and “Old Man River.” The singers were outstanding, and Kate was very enthusiastic.

We got to bed late last night; so we got up a little later this morning. I did get up for my walk. When I returned, Kevin got up, and we talked until Kate was up and ready for Panera. That was close to 10:00 a.m. We had some conversation with friends at a nearby table. It turns out that one of them is the mother of a high school friend of Kevin’s

From Panera, we went to church. Before going into the sanctuary, we stood around and chatted with friends. Kevin chatted with our pastor. Kate leaned over to me and asked me the pastor’s name. I told her, and she said, “I knew that.” We walked into the sanctuary and took a seat in one of the pews down front. As we sat down, Kate said, “Now I know where we are.” I asked her where. She said, “First Pres.” The she chucked softly and said, “I saw it on the sign.” She meant the screen at the front of the church that was scrolling upcoming events. We also spoke after the service with some friends we had not seen in a while. When we said goodbye, Kate asked who they were.

We went to lunch and then came back home for about 20 minutes before leaving to see The Hunchback of Notre Dame at one of our local community theaters. There were several very good singers in the large cast. We came back home where Kate worked in the yard for a while. Kevin and I came inside and talked about choices for dinner. We finally decided to go to a local seafood restaurant near downtown. We had a good meal and came back to the house. I put on a CD of Chris Botti. Kevin read a TCU magazine and Kate worked on her iPad. I joined them for a while. It was a pleasant respite after another good day.

As Kate readied herself to go to the room, she asked if she should connect her iPad to the charger. When I got to the room, she was getting into bed with her clothes on. I asked if she would like me to get a night gown. She said she would. When I got back she had taken her slacks off and asked me if she should put them on her chair beside the bed. I told her that would be fine. She said, “I thought so; I just wanted to be sure.” She is increasingly asking what she should do. In fact, she did just that as we got home from the theater. As she loses touch with more things, she looks to me for guidance to make sure she is doing the right thing. These are always things she would never have asked me about in the past.

This is one visit during which Kevin is bound to see more of the changes that Kate is exhibiting. She seems more childlike and less sensitive to the fact that Kevin will interpret her actions as something related to her diagnosis.

A Very Good Day

When I walked in the house yesterday afternoon, I found Kate and Mary seated in the family room. They were chatting though Kate had her iPad open to a puzzle she had been working on. I could see that they were getting along just fine. That made me happy.

The next step was to see that Kate got ready for dinner and the concert last night. It was then 4:45, and I had made 5:45 reservations at Casa Bella. From there I knew that we still had a long drive to the concert. Kate was in an especially good mood. When I told we would be leaving in 45 minutes, she got right up. She also asked me to get her something to wear while she showered. I did and put the clothes on her bed. She was ready in about 35 minutes. She had actually put on the clothes I had placed on the bed in her room. It wasn’t until later at the restaurant that I noticed that she was not wearing matching shoes, but they were both the same color.

Casa Bella is a restaurant we have frequented for over 40 years. We had our usual veal piccata. I had a glass of wine. We split an order of amoretto bread pudding. We almost always get the amoretto cheese cake, a longtime favorite of ours. Over the past year or two, I have noticed that she is forgetting that it is our favorite and occasionally order something else for a change.

Sitting there was just like old times. I could almost imagine that she didn’t have Alzheimer’s at all. If the evening had ended after dessert, I would have said it was a great day. As it was, the best was yet to come. The program was presented by Gentri, 3 tenors from Salt Lake City. They seem like a very wholesome trio. The theme for the evening was love. All of their songs carried out this theme. They sang a mixture of old and new music, some of which they had written themselves. The group was warmly received by the audience. What was important to me, however, was Kate’s reaction. She loved them. She was very enthusiastic. That is twice in a week that she has enjoyed a live performance, the earlier one was the play, An Act of God, that we saw in Asheville this past Sunday. Gentri closed with an encore of three songs from Les Misérables. It turned out to be a wonderful end to a very good day.