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Good days/Seeking explanations

This morning when I finished my post I wondered if the day would continue to be a good one. I am happy to report that it has. Kate has been in a good mood all day right up to and including a moment ago. That is when she called out to me asking where I was. I am in the family room listening to music, checking email, and reading Memory People posts on Facebook. I quickly went to the bedroom to check on her. I told her where I was and that I would be joining her shortly. She said, “That’s all right. I just wondered where you were. I was feeling a little lonely. I’m all right now.” All day she has been just that agreeable. It has been wonderful.

I also think I may have discovered the source of her problem over the past several days. I discovered one open yogurt container that was partially eaten with a label showing it was out of date, Today is October 10. It had a sell by date of September 29. I noticed that there was another unopened container with the same date. I threw both of the out. I am surprised that this would be the problem. On the other hand, her upset stomach was minimal. She never threw up. She only had one episode of actually spitting up. Her primary issue was an unsettled stomach. The only thing I could observe was her telling me that she was tired and that she seemed weak and uncomfortable. Since her vitals were all right yesterday, and she came out of it quickly, I suspect it was the yogurt. She may have eaten some of it two days in a row. I can’t be sure as I only found one open container

I feel bad about this as it is my responsibility to take care of the yogurt. I always buy yogurt with the date that gives me the longest time period in which she can eat it. What happened this time was that she went a week without eating as much yogurt as she normally does. I’m just glad that she is all right and that we have had a very good day.

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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.

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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.

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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.

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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.

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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.

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Salivation Problem

This afternoon Kate and I went to a movie, Columbus, at The Flick. This is the second time at there this week. Two days ago is when I made the entry about her being angry with me over not recognizing her salivation issue that lasted for the entire movie. Today I went with a minor concern over whether or not she would like the film, not thinking about salivation. After picking up our tickets and ordering soft drinks, we started to enter the theater when Kate asked for a napkin. I went back to the lobby and picked up several of them knowing that one would never be enough.

We went through the introductory video with recognition of the donors and some advertising as well as the previews. She used one napkin and asked for another about the time the film started. That left me with only one. At that point I knew she would not have enough to get through the movie, but I didn’t worry because she doesn’t usually have napkins throughout a movie. Today I was more sensitive to her salivation than two days ago. She was obviously struggling. She burped out loud a number of times and had used up her last napkin. I was getting concerned about burping and the possibility that it was loud enough to be annoying to others. I asked her if she thought we should leave. She nodded. We got up and left. As we walked to the car, I asked if she could explain what she was feeling. I asked if it seemed just like ordinary saliva. She said it was. I then asked if it was coming up from the throat or within her mouth. With her hands, she indicated that it was coming up from the throat. I then asked if she were able to swallow the saliva. She tried and was successful. I told her to keep doing that and see if that helped. She did. I didn’t say anything more.

She continued to have the problem all the way home but did not burp again. She did stop swallowing the saliva and kept a napkin to her mouth until we reached home. When we got home, she wanted to know if she could work outside. I told her that would be fine. As she is accustomed to doing now, she asked if she could use the clippers. Then she asked me where she could go. I told her she could choose to start any place she would like. She said the thought she would start out front and looked to see if that were all right. I told her that would be fine. We were now back to normal.

I should comment on what I mean by normal. It still appears that she doesn’t swallow her saliva most of the time. As I noted a week or two ago, she does periodically stop. I suspect that when for some unknown reason she thinks about the salivation, she stops swallowing. In the case of the movie, she is very inactive and, perhaps, that heightens her awareness of salivation. Then she has a reaction like many I have witnessed before. The interesting thing is that she uses paper products to wipe away the saliva all the time; however, she doesn’t always have the negative emotional response that she had on Wednesday and today. I don’t yet have an explanation for that.

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Déjà vu

It has been a good while since I mentioned anything about Kate’s Deja vu experiences. I am only doing so now to indicate that they still continue. For example, as we sat at a stop light coming to Panera this morning, a man walked across the street in front of us. Kate said, “There he goes again.” She also continues to see people she “remembers” at the restaurants we frequent. I typically say, “So you’ve seen him/her/them before.”

Speaking of things that continue, Kate is still not swallowing her saliva, and I have not heard from her doctor’s office since I left an email message for the doctor. I have called the office and left a message for the doctor’s nurse. She called me about 3-4 weeks ago. I explained my attempts to contact the doctor. Two weeks ago, I sent a letter to the doctor who started her practice. In that letter I told him about the events that had transpired since the end of June. I have not heard from him or Kate’s doctor. Something is really wrong with respect to communication. I am only glad that it does not appear to be a significant problem. It was a year ago this fall that I first mentioned the problem to Kate’s original doctor who is no longer in the practice.

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Salivation Crisis

I have mentioned on several occasions that Kate continues to have problems with salivation. The doctors have recommended several things over the past 6-8 months. Initially, we thought it was an acid reflux problem. That led to increasing her omeprazole. That didn’t work. We tried an antihistamine think it might relate to allergies. That didn’t work. Then Dr. Reasoner tried atropine. No luck. A month ago Dr. Reynolds gave her a prescription for glycopyrrolate. That doesn’t seem to have worked.

Since I could see no visible signs of acid reflux, I have been thinking she has just “forgotten” how to swallow her saliva. Increasingly, I have felt it is more than that.

Yesterday and today at lunch she has had difficulty eating. On both occasions, I thought it was acid reflux even though I couldn’t see some of the ordinary external signs that go along with that.

I gave her Gascon tablets to see if that would help. It didn’t. It is almost impossible to get her to tell me how it feels or give some some sign of a symptom so that I will be able to have some direction as to what to do or to tell the doctor. I finally got her to say one thing. She said her throat felt tight.

After she had taken the tablets, I asked if that was helping the problem. She asked, “What problem?” I don’t know whether she was temporarily forgetting her problem or that she didn’t think of it as a problem. When I tried to explain, she indicated that she still had trouble swallowing.

We remained at the table a long time. Finally, we left, but the problem was not over. It has continued all afternoon. I am at a loss as to what to do now. Tomorrow I will contact the doctor to let him know the situation and to say that she feels her throat is tight; so it is difficult for her to swallow. Maybe that will lead him to some other issue that can be addressed.

I am puzzled. I hope the doc has an answer, but I feel he won’t. This may be something that requires further testing.

I am also wondering if it could be a symptom of something more serious. I recall that on our trip to Machu Picchu and the Galapagos, someone traveling with us mentioned the serious of acid reflux and that left untreated, it could cause cancer of the throat. I am now wondering about that. That seems strange, however, as we have had the reflux under control for quite some time.

This is our first medical issue (if that is what it is) since her diagnosis. I hope it is nothing serious. I have just written a message to Kate’s doctor that he will get in the morning when he checks his email. I plan to call him as well.

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Salivation

I don’t think I have written much about Kate’s problem with salivation, but it has gone on for at least a couple of months, possibly more. The symptom that most people are likely to notice is that she goes through paper products right and left. When we are in a restaurant, she uses the paper napkins give to us. That includes both the napkin to use with the meal as well as the small cocktail napkin that often serves as a coaster for our drinks. She goes through hers rather quickly. Then she gets my cocktail napkin(s). At home she uses Kleenex and toilet paper and paper towels.

At first, I interpreted this as an acid reflux issue. I even sent a message to her doctor describing it as a reflux issue. Dr. Reasoner told me to double her reflux medication. If that didn’t work, she said to try an antihistamine which I did. She also suggested a diet change, but I’ve not tried that. I don’t think Kate is ready for that.

After months of this, I have decided that the problem is that Kate has forgotten that we swallow our saliva. She doesn’t like to do that. I decided this after watching her carefully all this time. I see no physical signs of reflux
A week ago I mentioned to Kate that she used to swallow her saliva. I also asked if this bothered her. She acknowledged that it does. She even agreed to try to swallow rather than spit. It seemed like she was having some success. It wasn’t that she swallowed all the time but that she at least did it sometimes. Now she seems to have gone back to her old ways. The big exception is when she focuses on something. Right now she is working a jigsaw puzzle on her iPad. She is not spitting out any saliva. I’ve observed her outside pulling leaves and pruning. It appears that she does not spit. It also seems like the most typical time for this is when we go out to eat. Of course, that is the time that I have the longest period to observe her.

At the moment, I don’t know what else to do. I think I will continue to mention that she can try to swallow and see what happens. Otherwise, it may simply run its course.