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Salivation

I am still in a quandary concerning Kate’s salivation problem. I have new information that gives me another slant on things but no solution. Yesterday at lunch and again at dinner, Kate had the “reflux/salivation” problem. At dinner, as she was trying to calmly wait it out, she said, “There it goes again. I asked her what she was talking about. She told me, “A hiccup.” I was surprised at the answer because I wasn’t hearing any noise that would suggest a hiccup. That led to my asking, “Do you mean that it was like a hiccup, or did you really have a hiccup?” She told me she really had the hiccups.

To me this really sheds a different light on the situation. Even though I have felt she wasn’t showing clear signs of reflux, I have given her omeprazole and Gascon which are intended to address reflux. No wonder they haven’t stopped the problem. I noticed something else last night. She had only taken only one or, possibly, two bites of food before encountering the problem. That alone made me question whether it is reflux.

As was the case on Sunday night, Kate went to bed after taking her evening medications. She seemed rather calm and went right to sleep. She slept well and is fine this morning. That makes me wonder if the hiccups induce some measure of anxiety that makes it hard to stop it.

The real question is what is causing the hiccups. I did an online search about it. Although hiccups are an annoyance, it doesn’t appear that they represent a serious medical issue. I noticed some of the old home remedies for hiccups. I got her to hold her breath as long as she could. I also got her to drink some water. Those didn’t work.

This morning I sent another message to her doctor telling him about the hiccups. Maybe he will have a thought about it.

Now I am wondering if the salivation and the hiccups could be a result of a common cause, or are they unrelated. It seems to me they are different issues altogether. I say that because she seems to have the salivation at all times of the day. The hiccups only seem to appear at meal time.

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Sundowners?

I have mentioned signs of possible sun downing in prior posts, but I don’t believe I have said anything in a while. Tonight Kate came in from outside without my calling her in. I suspect that was related to the heat. She has not been staying out very long lately.

Once inside, she said or did several things that in combination are somewhat unusual. First, she came into the bedroom where I was watching the news and asked, “What now?” I told her it was after 8:00 and that I was going to take my shower. She said she needed to take as shower as well. I told her she could go first. She had the clippers in her hand and walked toward the end table on her side of the bed and asked if she should put them in there. I told her I thought it would be better for her to put them in the laundry room where she would find them when she went outside.

She left the bedroom and came back in a few minutes. She stood by the bed, looked at me, and asked, “Are we sleeping here tonight?” I told her we were. She asked me what she could do. I told her it would be a good time for her to get her shower. She left to do that.

When she came back to the bedroom, she had taken her shower and put on a robe without a night gown. This is something she does fairly frequently when she can’t seem to find a night gown. I asked if she would like me to get her.a gown. She said she would, something that is a fairly typical response. That seems surprising since she continues to be as independent as possible. Maybe she is just tired at the end of the day.

She started picking up a few things on her side of the room. One of the things was a bra hat she picked up and threw to me. I must have looked surprised. She said, “Well, you said you would know where to put it.” Of course, this was one of those occasions when she thinks I have said something when we haven’t had any such discussion at all.

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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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Pulling Leaves

Last week Kate had several (four, I believe) bad days. She was frustrated with working puzzles on her iPad, and the weather was preventing much work pulling leaves. During the past couple of days, she has been able get outside. Monday was one of those. When I called her in to get ready for us to go to dinner, she seemed in a better mood than last week.

Yesterday we had light rain off and on (mostly on) all day. I was concerned about her not being able to work outside. Things worked out better than I expected, and I sensed again the therapeutic value of being outside. I think the key is having something that she is able to do and that she believes is worthwhile.

After returning from lunch, she remained outside. I called her in a little over four hours later. Her hair was wet as was the top she was wearing. Her shoes, not her yard shoes, were soaked. It didn’t bother her at all. In fact, she would have remained outside longer if I hadn’t called her to come in. Although I was happy that she was finding satisfaction outside, I couldn’t help feeling sorry for her.

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My Emotions

I like to think that I am getting along pretty well, and I really am. However, I try to be honest with myself and with others that I am not unemotional in my response to Kate’s AD. We are at Panera right now. We came in through a side door rather than the main entrance that is almost directly in front of the counter where you place your order. For that reason, I generally assume that no one sees us coming in.

As usual, I came in, picked out our regular table, arranged it so that Kate would be positioned with minimal glare on her iPad, put here iPad at her place, and then went to the counter to order. I was surprised that before I could order, the person behind the counter said she had my blueberry muffin. I said, “I can’t believe you saw me come in. Who saw me?” Two people’s hands went up.”
When I got back to the table with Kate’s muffin, I thought a moment. One of the young women who raised her hand is Kelcie. She is leaving this Saturday to go back to Idaho where her husband is an undergrad at Brigham Young University. She and others have been so very nice to us. I decided I should go back and express my appreciation. She was talking with three others behind the counter. Each of them was there when I ordered. I asked Kelcie if she knew that Kate has AD. She did not, but said she knew something was not right. I told her and the others with her that I like for people to know just in case something unusual were to happen. Then I said, “I just wanted you to know how much we appreciate how nice you have been to her and to me.” Without the slightest warning, tears welled up in my eyes, and I choked up so that I could hardly get the words out.

I am a naturally tender kind of person; so choking up is not unheard of for me. I am touched by lots of things like movies, plays, funerals, and music. This happened to me when the doctor first told us about Kate’s diagnosis. It happened when I told my staff about her. After living with this for so long now, I don’t have this kind of experience very often. When I do it is typically when I am alone or in an audience. For that reason, I was surprised when this happened. It caught me off guard.

This is a personal reminder of how sensitive I am. That’s probably a good thing.

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More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

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Frustration and Boredom

My follow up to yesterday is only to say that it things didn’t get better for the second day in a row. As always, I try to figure out why when things are not going well. Sometimes I have a clearer idea than others. Often I’m just not sure. Yesterday, for example, she seemed to start out with a less cheerful demeanor. That was even before any particular event occurred that might have brought her down.

That was different once we got to Panera where she was working on her jigsaw puzzles. Repeatedly she kept hitting something that took her out of her puzzle. That particular screen has a “Back” arrow in the top left-hand corner, but she doesn’t see it. I just hit it, and she is back to the puzzle. Other times, it is a little more difficult, and I just hit the “Home” button on the iPad. That takes me to the screen with all the app icons. I select the one she had been working on (if I can remember it), select it, and give it back to her. As noted in the past, she never asks for my help. She just closes the iPad, puts it on the table, and looks frustrated.

To make matters worse, we had a rainy day. That meant that she couldn’t work in the yard. Since her two main activities were not available, she spent more time in bed. I tried to interest her in a movie, but she didn’t want to go at least to the one that I thought might be the best possibility for her.

We went to our regular place for pizza. When we returned, I put on a Katherine Hepburn movie. She seemed eager to watch. A few minutes into it, she said she was sleepy and got into bed fully clothed. She didn’t get up until this morning. She seems normal this morning. That means she isn’t in a bad mood although we got off to a rough start when she had dressed in some clothes that I didn’t think she would have wanted to wear since we are driving to Nashville to have lunch with our friends Tom and Angie Robinson. This was one of those times I put clothes on the bed for her. I took her to the room and left her to put them on.

When she came out she was wearing the same thing she had been wearing. That happened two times before we got it right. You might think the easy answer is for me to stay with her while she dresses; however, she doesn’t like for me to do that. She feels she doesn’t need my help.

We are now at Panera before driving to Nashville. On the way here, I decided to tell her that today is my birthday. (Jesse had sent me a text and plans to call while we are on the way to Nashville. I didn’t want Kate to learn about my birthday that way because I feared that she might feel bad for not remembering.) I said, “Today is my birthday. I am 77. Did you ever think you would be married to someone that old?” She said, “I was just thinking that.” That is all she said. No surprise. No emotion. It doesn’t make me sad for me, but for her.

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Ups and Downs

After that rough day on Monday, Tuesday turned out to be a good day. All day she seemed to be in a better mood.

Yesterday  was another matter. Once again, it involved (at least partially) her problems with the iPad. She continues to hit something that take her to a different screen (window) from the puzzle on which she was working. In almost every instance I have been able to see a button that will get her back to the puzzle. I hand it back to her, and she goes back to the puzzle. Eventually, sometimes in minutes, she encounters the same problem. It does no good to explain how to get back to her puzzle because she can’t remember what I say. In addition, I can’t explain how she got out of the puzzle because I am not working the puzzles and don’t know the layout. Even if I did, she wouldn’t remember it.

We went to Panera three times again yesterday. Kate got up early and was ready to leave before 8:00. We got there about 7:45. By 10:00, she wanted to leave. We came back home where she pulled leaves for a while. Then she came in. She asked me what she could do. I asked if she wanted to go back to Panera. She said she did. We remained there until 11:30 when we went to lunch.

When we came home she pulled leaves for a short while. Then she came inside and worked on her iPad. She grew bored again and wanted to get out of the house. We went back to Panera where we remained until shortly after 4:30. We were home until 5:30 when we left for Casa Bella for Broadway night. At home she worked a while on leaves until I called her into the house to get ready to leave. She forgot and remained outside. I had to go back two other times. When I reminded her we were going out, she said she didn’t know what she would wear. I told her I picked out her clothes. She came in and started to take a shower. I told her we didn’t have time for that. She then asked again about her clothes. I took her to her room where I had put the clothes on the bed along with her shoes and socks. I left her to get dressed. Soon I heard the shower. I went in, and she was about to get in the shower. I reminded her we needed to leave. I took her back into her room. She had not remembered that I had put out clothes. I remained with her while she dressed. At one point, she apologized for making me wait. I told her I didn’t want her to worry about that, and that I was fine. I told her we were going out to have a good time together.

We got there on time and had a good evening. The Adairs, with whom we usually sit, were not there; so we sat with another couple that we had met a couple of times before. We had a good time although Kate did not appear to be as enthusiastic as she has been after some of these evenings. It makes me wonder if the difference was a change in Kate or, possibly, that we were sitting with people she didn’t know as well.

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Visiting Friends

Yesterday we visited Ellen, Kate’s best friend who now lives in Nashville. We have been visiting her every 4-5 weeks since she had a stroke two years ago this coming August. In February, she suffered a couple of seizures that have been a setback after she had been making a good recovery.

On Tuesday evening, I received a text from Jennifer, her daughter, letting me know that Ellen had declined noticeably since our previous visit a month ago. That visit was the first one we had made since her seizures and since she had been placed in memory care. At that time, we were not able to detect any memory issues, but it was clear that her speech had deteriorated since our previous visit. That makes conversation difficult. Prior to that we were getting about 60-75% of what she said.

During yesterdays visit, we were only able to understand about 20% of what she was saying, if that. We did best when asking her yes or no questions. Ellen’s decline comes at a time when Kate is also declining. I can’t help wondering how long we will continue these visits. My intention is to do so absolutely as long as possible. That would mean as long as it seems pleasurable to both of them.

Interestingly, Kate didn’t seem to notice the problem with Ellen’s speech to the extent that I did. That suggests to me that she doesn’t understand much anyway; so the fact that she can’t pick up all the words is hardly noticed. All-in-all it was a good visit. We enjoyed seeing her, and it appeared that she enjoyed seeing us.

Before returning home, we stopped to see Ann and Jeff Davis whom we first met at Wisconsin where Jeff and I were in grad school. Later Jeff and I were colleagues at UT. Our daughters are the same age, and Ann became Kate’s best friend before they moved away to Dayton, OH. They moved to Nashville about twenty years ago. We have not kept up with them until very recent years. I told them of Kate’s diagnosis about two year ago. Since that time we have made a deliberate effort to see them more regularly.

Yesterday’s visit with them was a good one. We went to dinner and the drove back home. We were in the restaurant almost three hours. At first, I was a little concerned because Ann seemed to be looking at me more than Kate. That has been an issue in other relationships we have. Some of that is rooted in the fact that I talk more than Kate. I believe Kate’s Alzheimer’s has also made it more challenging for Kate to assert herself in conversations. I imagine that this sometimes occurs because she is not following the conversation. Other times, it may be that she isn’t able to interject her comments quickly enough to be recognized. She is slow about everything; so I don’t find it surprising that she might have a longer latency period before being able to get her words out. Kate still has great admiration for Ann. I look forward to maintaining this relationship as long as possible.

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Not a good day

We have just returned from dinner at Chalupas, our favorite Mexican restaurant. We go there about once a week, usually on Monday night. Sometimes I think of it as a good place for Kate when she is down. Tonight was one of those occasions. I wish I could say that the experience uplifted her spirits. It’s not just the food. In fact, it’s not even primarily the food. We like the owner and his family, all of whom work there at least from time to time. School is out, and all three children were working tonight.

I wish I could explain why Kate has been down today. I do know that she seemed all right this morning when we were at Panera. The first sign came just before noon when I told her that it was time for me to leave for Rotary. She didn’t say a word, but she looked dejected. This follows a few recent signs that she is bothered when I need to go somewhere. She feels trapped at home.

The need to get out comes up periodically in the afternoon. She comes into the kitchen which I use as an office and asks, “What can I do now?” As I noted in a post yesterday or day before, I generally give her options. The one with which she connects is always going to Panera. That occurred without words this afternoon when I returned from Rotary. She met me in the kitchen and simply said, “I’ll meet you outside.” That is her instruction that she is ready to go to Panera. I told her I would be right with her. I packed up my computer, our iPads, our cups, and met her outside. We were at Panera about an hour when she was ready to leave. During the time we were there, she was experiencing frustration with her iPad. The problem continues to be that she hits a wrong button while she is working a puzzle. That takes her to a screen that she doesn’t want. She doesn’t know what to do. She never asks for my help. She just groans and/or closes her iPad and puts it on the table. Often she lets me (somewhat reluctantly it appears) to get her puzzle back. She then works a while longer until it occurs again. After several tries, she is ready to leave. That is exactly what happened this afternoon.

On the way home I told her that I would drop her off and then go to the AT&T store to see about a new cover for her iPad. She has an old one that won’t prop up so that she can more easily work puzzles. When I told her this, she told me she thought we were going to eat. At that time it was only 3:50. She looked dejected and made audible groans which is common. I tried to talk with her and look for a way to help. She didn’t want to talk at all. This is actually an extension of an old habit she had prior to Alzheimer’s.

When I got back home, she seemed even more discouraged. I asked if she would like me to play a recorded show of Golden Girls. She wasn’t excited about that but agreed. At 5:30, we went to eat.

Right now we are in our bedroom where I have the PBS Newshour on. Kate is in bed working on her iPad. She seems content at this moment. No groans. No dejected looks. I hope this continues. Ordinarily, we do this routine, and she seems to enjoy it. I hope that is the case tonight.