It is now 10:30 a.m. Kate is sleeping soundly. She got in bed last night before 10:00 and went to sleep quickly. She did awaken when I got in bed closer to 11:00. She was up around around 8:45 and took a shower. After the shower, she returned to bed. I waited on her for a while so that we could both go down to breakfast at our hotel. She was sleeping so well that I finally went down to breakfast on my own. When I returned, she was dressed but back in bed asleep. Check out time is noon; so I am going to let her sleep a while longer.
A Good Day (10:36 pm)
I am writing from our hotel room in Buffalo, NY. We have had a long but leisurely trip from Knoxville. Kate was up early this morning and ready for Panera at 7:30. I had been up since 5:18 and had a walk. I was then taking care of those things that have to be done at the last minute. She wasn’t dressed exactly the way I had intended. I told her I would like for her to change the pants she was wearing. She was quite agreeable,
As it turned out, it worked out well that she was ready so early. That enabled us to get to Panera early and relax before leaving for the airport about 9:50. Our flight left on time. We had a planned layover of three hours in Atlanta. Our flight was delayed fifty minutes waiting on the incoming flight. That meant virtually four hours in the airport. We had nice lunch and then spent the balance of our time on our iPads.
When we arrived in Buffalo, we came directly to the hotel and checked into our room. We got a recommendation of a place to eat from a man at the front desk. We ate at Bravo Cucina. It was a good meal but not great. What made the whole thing special was that Kate was more talkative than I have seen her in a while. She talked about mostly about our marriage. She spoke about how fortunate we have been and how we recognized our good fortune. She also talked about the travel we had done and what a wide variety of travel experiences we had had. She said she was tired and would go right to bed when we got back to the hotel. She was right about that. She is sound asleep right now.
Tomorrow morning we will take it easy. I intend for us to have a light breakfast either here at the hotel or at a Starbucks that is across the parking lot. We are planning to stop for lunch at the Italian Fisherman at Bemus Point on Chautauqua Lake. We have done this each of the past four or five times we have come to Chautauqua.
Kate said several times that we are off to a good start on this trip to Chautauqua. I couldn’t agree more. I hope the balance of the trip goes as well.
Pulling Leaves, Plants and Strange Behavior
We are now approaching the middle of the summer, and we have not made a trip to Lowe’s for plants. Last year and the year before we were making such trips almost twice weekly. The last time Kate expressed an interest was during the winter. We went there but found they didn’t have much and said they would start getting things in late February. On several occasions, I have asked Kate if she would like to go. She has said with a groan, “Not now.” I have even suggested that she might want to put some plants in the pots beside the spa as well as some others for the patio and front porch. She has unenthusiastically agreed that it would be nice but has never picked up it so as to take action. I take this as a critical sign in the progression of her illness. It is equivalent to her giving up her computer (email, Facebook, and finally, her photobooks). Fortunately, she is still pulling leaves although our recent weather has meant that she comes in after being outside for a short time. It also means for showers and changes of clothes.
I have also made a change. I am no longer suggesting that she wear work clothes outside. I just let her wear whatever she has on when she decides to pull leaves.
I have mentioned several strange behaviors of Kate’s, but I don’t think I have mentioned that she has been taking paper napkins from the restaurants we frequent. At first, she was doing this to have them in the car when she might need something for her salivation problem. Now, however, she is tearing them up (along with the paper towels she has used in the house) and put them in a basket in the garage. It is similar to her collecting hickory nuts and putting them in the basket on our island. The big difference is that she is using the nuts as a decorative effect. I didn’t realize what she was doing at first. I thought she was tearing up napkins to put in her compost. When checked the compost, I didn’t find any. I do find an occasional Dr. Pepper can and yogurt containers as well as the tops of the containers. I haven’t asked her to explain why she is doing this. She wouldn’t remember. On at least two occasions, I have been walking out the door of the kitchen on the way to the car when she starts to take a yogurt container to the compost. In those instances, I have pointed out that they go in recycling and not the compost.
The combination of the increasing problems she is having with her puzzles on the iPad and the heat is that she seems to be more restless (behaviorally speaking). What I mean is that she spends a little time at Panera until her frustration pushes her to go home. Then she works outside for a little while until she gets hot. That is exactly what has happened this morning. We were at Panera for a little less than an hour between 9:00 and 10:00. We went home where she pulled leaves. She came in and took a shower. She came into the family room where I was writing this post for my journal and said, “Are you coming?” She was ready to go back to Panera. That is where we are right now. It is 11:19 a.m. I think we will just work a while on our devices until around noon when we will have lunch. Then I imagine we will go back home. I feel sure she will pull leaves a while until we are back here since we don’t have any other plans until 5:00 when we have a visitation for a former neighbor.
In the car on the way over here, she pointed to her cup that was sitting in the cupholder and motioned to me as a way of asking if it were all right for her to take a drink. When we parked at Panera, she did the same thing only this time she was asking if she should take her cup into Panera, something we do every time we come here.
Asking Permission
I have noted a number of times that Kate asks permission to do certain things or what she should do. This is becoming a more common occurrence now. It seems, however, to center around the same things. The requests for permission are almost always if it is all right for her to work outside in the yard. This typically happens when we are approaching our house on the way back from Panera, lunch, or dinner. In addition, it includes whether she can use her clippers and which part of the yard she can go to. I still don’t ever recall telling her that she could not work in the yard or a certain part of the yard or not with her clippers. When I give permission, she gives me a look of surprise as though this is a rare occasion. I must admit I play the game myself. I say, “I guess I am in a good mood today” or “I’m really getting lenient.” I suppose this is a replacement for the game we played when she accused me of being “anal” in a teasing sort of way.
One of the other things she does is more understandable. She asks me if she should take her iPad when we go somewhere in the car. She does the same thing for her cup. This is not surprising because we are often going to Panera where she will need these things. Sometimes we are going where she won’t need them.
Less understandable is her asking me if she can use her iPad in the evening while I watch the PBS Newshour. Once again, this is something I have never told her she couldn’t do; so it seems strange that she would ask my permission. My interpretation is that this is just a matter of the transition from her complete independence to a growing dependence on me to tell her what she should do.
Under this same heading I should also note that she is more frequently asking, “What now?” Or “What can I do now?” This happens most often at night when she has come in from the yard. It also happens on days when because of rain or heat, she doesn’t spend as much time in the yard. When she has to spend extra time in the house, she gets bored and asks what she can do. I always take this as a sign that she wants to go to Panera. So far I have been right every time.
Good Visit with the Greeleys
Yesterday we went to Nashville for a visit with Greeleys. We arrived around 11:30. Jan prepared lunch for us followed a little later by Ben and Jerry’s ice cream. We had a great afternoon of conversation on many topics. It was refreshing that no mention was made of our current president who dominates the news these days.
As I probably have mentioned, Kate’s relationship with Scott extends back to the cradle. In fact, their mothers were good friends and pregnant at the same time. Although they didn’t live in the same town while growing up, their families maintained periodic contact during that time. As I understand it, the parents always thought it would be nice if the two of them became a couple. It just never happened.
Scott has, however, remained a very special friend to her. We have always had good visits with Greeleys. With this background in mind, I was eager for another visit. I was not disappointed. As it turned out, this was not just a good visit with them but another in a succession of good visits with friends in the past two weeks. Each of the couples with whom we visited are among our regular friends with whom we had had visits over a long period of time. It is a bit unusual, however, for us to visit so many of them in such a concentrated period of time. This was deliberate on my part. As I have noticed Kate’s transition to a time when her memory is even weaker than now, I have wanted to maximize her contact with our closest friends.
We went to dinner at Olive Garden before coming home. The Greeleys got to be a part of our lives at the end of the meal. Kate went to the restroom before we hit the road. I got up and went far enough with her that she could see the restroom door. Then I stood up beside our booth which enabled me to see Kate when she came out. Jan and Scott both got up and stood with me. As we chatted, we were facing the door to the restroom. It took a while for Kate to come out. Jan asked if she should go and check on her. I told her that Kate often takes a while and even mentioned waiting as long as twenty minutes for her to come out of the restroom on another occasion. We waited a little longer, and I conceded to Jan’s interest in checking on her. Jan came back and indicated that Kate wasn’t there. When she said that, I assumed she would be at the front of the restaurant waiting for us. The three of us headed there where we saw her seated at the bar drinking a glass of water. When she saw me, she calmly said, “I’m glad to see you.” I said, “I’m sorry. I let you slip by me.” That was all that was said. She got up from her chair. We walked over to the Greeleys and walked to the car. It was a good illustration of just how easily I can lose her. In this instance, we were in a place where we were not likely to experience any serious consequences; however, it reinforces my concern about traveling with her. On our previous trip to Lubbock, I got the locations of all of their family restrooms in the Atlanta airport so that we could use them on a future trip.
One week from today, we fly to Buffalo for our annual visit to Chautauqua, and no doubt our last. I will be especially attentive to how things go on the trip, both the travel portion and the time at Chautauqua. This will be especially influential in my plans for a trip to Fort Worth in mid-October. At the moment, I am doubtful that we will make it. I will make a concerted effort to do so as this would be Kate’s last trip home. In addition, it will be special because or grandson, Brian, will be a freshman at TCU this year. His family plans to come over from Lubbock. Kate’s brother and his wife also plan to come from San Angelo. It will be a special family time.
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.
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.
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.
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.
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.
