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An Indicator of Change

Numbers have played an important role in my professional career in market research. The vast majority of the reports and presentations of research findings were filled with charts and tables containing lots of statistics. As a result, I have often yearned for a chart that would summarize our experiences since Kate’s diagnosis eight years ago.

That would have been possible if I had kept statistical records along the way. During the early years after the diagnosis, I didn’t even think of doing that. As time progressed, I felt I didn’t have time to keep an accurate statistical record. I settled for what we researchers call a qualitative approach. I simply describe in words what our lives have been like. Most people can relate to that more easily anyway.

The problem is that words don’t always convey the changes that occur over time. For example, I find that my early posts talked about how short her memory was. Some of my recent entries say essentially the same thing, and yet I know that her short-term memory is vastly shorter now that it was then. I do try to call attention to symptoms the first time they appear. I also try to give some approximate time indicators. For example, I often say that Kate’s sleeping pattern started changing during the spring of last year or the approximate number of months since the pattern started changing. For the most part, however, this blog consists almost entirely of my descriptions of our experiences.

Having said this, I have discovered that launching the journal as a blog one year ago has provided statistical data. Only one of those gives me much information that relates to our experience with Alzheimer’s, and it is very limited. The WordPress software I use organizes all of the posts by year. I put that together in the chart below. It doesn’t begin to do justice to what has gone on the past eight years; however, it does show how the progression of Kate’s Alzheimer’s has affected my writing.

During the first three years (2011, 2012, and 2013), our lives didn’t change much. I didn’t have as many things to write about. That began changing in the years 2014, 2015, and 2016. I remember that 2014 was the year I felt I should tell our children and close friends about Kate’s diagnosis. Early that same year, we went to New Zealand. I knew then that our traveling travelling days were numbered. It was becoming increasingly difficult to manage everything on long trips. We took our last overseas trip (Switzerland) in 2015. In 2016, I saw more signs of change. I believed that our annual trip to Chautauqua would be our last. Fortunately, we were able to make one more trip in 2017. That year I wrote 77% more posts than the preceding year. The big jump occurred last year. Our lives changed substantially as did the number of my posts. They were up 132% last year. Of course, that was the first year of my blog. I know I was more diligent in writing. Even with that, however, I have always tried to write when I had something I wanted to say (not necessarily what readers might want to hear <g>). In 2018, that happened more often.

So, what is in store for 2019? The answer is I don’t know. As in previous years that will depend on what happens next. If I were to guess, I would say that the posts will level out for a while and, possibly, decline. Through the first 36 days of the current year I am averaging one and a third posts a day. I expect that Kate will sleep more, and we will be less active this year than last. That might mean fewer things for me to report. As with so many things, time will tell.

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A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

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Definite Progress

Yesterday was clearly a day of improvement for Kate. There has been no sign of wheezing since Friday evening. She is also coughing less. Those were the two most obvious signs of her being sick. She has had to clear her nose more than usual, but it has been less of a problem.

She has been so tired during the past eleven days, that I was surprised when she got up about 8:30. She wasn’t as groggy as she often is. For the first time in several weeks, we arrived at Panera about 10:15. That gave us plenty of time for a muffin and lunch before the sitter came at noon.

When Valorie arrived, she gave her a friendly greeting. I mentioned that I had put in a DVD of Fiddler on the Roof. At first, she said she wanted to rest. Then she changed her mind and wanted to watch. When I told her I was leaving for Rotary and the Y, she said, “You’re leaving? Why don’t you stay here with us and watch?” I explained that I needed to get my exercise and would be back later. She didn’t complain, and she didn’t look sad. It was clear by the look on her face, however, that she really wanted me to stay. As I left, Kate and Valorie were watching Fiddler. I wondered if Kate would make it through the entire movie without resting. When I returned, Valorie said she watched the whole thing without napping at all. I was happy to hear that.

The big disappointment of the day was learning a little later that Valorie will no longer be coming. She is the sitter I liked the most and would have loved having all the time. The agency didn’t give any explanation. Given the privacy laws, I can understand that, but I would really like to know if she left the agency or they shifted her to another client. I have her phone number and plan to call her tomorrow.

In the meantime, they are sending the new sitter that came last week while I attended a luncheon. I felt she was all right, but Kate slept the whole time I was gone. I did introduce the two of them before leaving, but I wish Kate had had more time to get somewhat accustomed to a new person. This is one of the challenges of our time. There is a lot of transition in positions like this. It makes me realize how fortunate we were with the team of caregivers we had with Kate’s mother. After the first month or two, we settled into a team seven or eight people who were with us until her death. That was almost five and a half years.

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Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

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Making Progress?

Kate was getting up on her own about 11:45 yesterday when I saw her on the video cam. I went to the bedroom and asked her how she was feeling. She looked puzzled and said, “Why do you ask?” I don’t think she thought she was sick. In fact, over the past nine days she has only recognized that she coughed and had to blow her nose and that, of course, only in the moment they happened. I had told her she had a cold, but she never remembered it. Day before yesterday, she definitely felt sick. That was when I heard her wheezing. I don’t believe she has had a conception of her being sick over a few days.

The good news is that I listened for her wheezing and didn’t hear anything. Then I asked her to take a deep breath and blow out through her mouth. She did that a couple of times. I still did not hear a wheeze. That made me feel a lot better. I didn’t want to see this advance to pneumonia. Of course, both of us have had the pneumonia shots, but we all know they don’t always work the way they are supposed to. Like many others, we had a light case of the flu last year even though we had the flu shot.

In addition to not wheezing, it was a good while before she coughed after getting up. Excluding her Alzheimer’s symptoms, she also seemed more normal. When I walked in she said, “Are you my daddy?” When I told her I was her husband, she couldn’t believe it. I decided it was best not to go into an explanation and suggested she take a shower. She asked where the bathroom was, and I took her. She took a long shower, dried off, and got back in bed.

After I got her up and helped her dress, she seemed fine. She wasn’t coughing. I decided to go out to lunch When I backed he car out of the garage, she coughed several times. Then I had doubts about going out. When she stopped, I decided to go ahead. Except for a couple of briefs coughs, she was fine at lunch.

Several times she asked where we were. Of course, she has been doing that for a long time. Now there is a new twist. When I tell her we are in Knoxville, Tennessee, she often asks, “What is Knoxville?” Then I explain that it is a city and that Tennessee is the state. It is only in the past few months that she has commonly asked this. It is another sign of the subtle changes that are constantly taking place. Mixed with her questions about our location, she also thought at times we were in Fort Worth. I suspected this on the way to lunch. She commented on remembering many things she saw along the way.

We came back home after lunch. When I got out of the car, she asked if she could help bring things in. I am sure she thought we were traveling and needed to unload the car. I told her I could get everything. Let me digress a moment.

(This is something new that I have mentioned before. Over the course of her Alzheimer’s, she has rarely asked if she could help me. In the past few weeks, she has asked if she could help me fold and put up the laundry, unload the dishwasher, and now unload the car. I also mentioned in a previous post that the other night she asked if there were anything she could do to help me. In that case, she was worried that I was carrying a heavy load and wanted to ease my burden. These may seem like very little things, but they are totally different from the norm the past ten years or so. She was letting me do things even before her diagnosis.)

She said she was tired and wanted to rest but brushed her teeth first. After brushing, she walked back to me in the kitchen. I could tell by the look on her face that she wanted to know what she could do next. That is a very common thing for her to do. I gave her the iPad and said she could sit in the family room and work puzzles, and I would be there in a minute. I went back to my computer. When I had finished what I was doing, she was walking out of the family room to the back of the house. I don’t believe she even sat down to work her puzzles. Shortly, I went back to one of the guest rooms where she was resting on the bed. She has definitely been more tired since catching her cold.

About two hours later, she came into the kitchen with her iPad under her arm and stood beside me. She didn’t say anything. This, too, is a very common experience. I knew that meant she wanted to get out of the house. We went to Barnes & Noble. We had been there fifteen minutes when Kate looked up at me and said, “I forgot they had this here.” I said, “What do you mean?” She pointed to her iPad and the puzzle she was working. By now I shouldn’t be surprised that she doesn’t recognize her own iPad, but I am. This was one of those times. I wonder what could have made her think it belonged to Barnes & Noble. This is similar to what frequently happens in restaurants. As we are about to leave, she often asks if the cup or glass is hers or belongs to the restaurant. It always makes me think about how she perceives the world. I simply can’t imagine how confusing for her it must be not to know where she is, what is hers, where we are going, and what she is supposed to do. There is so much I don’t understand. No wonder she gets confused.

We had another beautiful end to our day. I had chosen a YouTube video of choral music. In its cycle from one video to the next, we landed on a series of videos by a church choir. I didn’t see any identifiers as to what church or where it is located. I will have to check today. I do know that Kate was taken with everything they sang, and almost all their music was unfamiliar to either of us. She didn’t want me to stop the videos to go to bed. Finally, I turned them off and help her get ready to bed. I had to assure her that this was not a live concert we were watching, and we could pick where we left off tonight.

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Day 9: The Cold Becomes Something More

I was interested in getting an idea of how Kate was doing yesterday morning, so I tried to get her up for lunch. That would have given us time to be together as she was getting ready as well as at lunch. This was one of the many occasions when she just wanted to remain in bed. The first time I walked into the bedroom, she was lying in bed awake. I took a glass of water and asked if she would like some. She said, “In a minute.” She looked mildly confused or disturbed. When I asked if something were wrong, she held her hand up to let me know she didn’t want to talk about it. I sat down on the bed and said, “It looks like something is bothering you. Could you tell me about it?” She shook her head no. Then I asked if she would like me to let her rest a little longer. She did. I told her I would be in the kitchen if she needed anything.

About twenty minutes later, I went back to let her know that I would be going to the Y a little later and wondered if she would like to go to lunch with me or let the sitter help her dress and take her. She opted to stay in bed and let Mary handle things. Then I noticed she was wheezing slightly. It wasn’t much, but I took that as a warning sign and called her doctor. Unfortunately, they had just closed for lunch, but her doctor’s nurse called me back as soon as she returned to the office. She advised us to go to an urgent care center to have her checked.

We went to a nearby office that has quite a few locations in various parts of town. We have been to one of their other offices in the past. I like the fact that you can schedule appointments online and wait at home until they text you thirty minutes before your appointment. That doesn’t mean that you don’t wait in the waiting room, but the wait is significantly shorter. I also like that they have a TV that lists the order in which patients will be called. Both times we have used this system, Kate has been the next person called. That happened again yesterday.

This was a time I could have used my cards indicating that she has Alzheimer’s, but I forgot. Instead, I discretely told the woman at the front desk and the nurse who led us to the examination room. That was good because Kate had trouble following very simple directions like stepping on the scale to be weighed and where to sit. I knew that when we got to the x-ray room, she was going to have a problem. It worked out fine, but she did get confused and spoke fairly strongly (for her) to the nurse to be clearer about what she was supposed to do.

Her vitals were just fine. Her blood pressure (139/80) was higher than it used to be, but her temperature was 98, and here blood work showed no sign of an infection. She had lost five pounds since her last doctor’s appointment in the fall. Of course, scales can vary, but I couldn’t help thinking that might be a result of eating fewer blueberry muffins. That doesn’t happen nearly as much now that we are not at Panera every day. The x-ray, however, did show congestion in the bronchioles. Although it appears that she does not have a bacterial infection, the doctor put her on an antibiotic and advised us to contact her doctor on Monday.

She slept well through the night and had only one coughing spell that occurred shortly after going to bed. She was up at 6:30 to go to the bathroom. I took the opportunity to give her the next antibiotic and Mucinex. I didn’t detect any wheezing; however, a few minutes ago, I went to her beside and listened carefully. She was wheezing very slightly, less than she was yesterday. I hope we will see some improvement today.

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The Cold on Day 8

I am gaining a better perspective on the lives of other caregivers who deal simultaneously with dementia and other health issues at the same time. To be sure, I am getting only a small taste of what others live with, but it does reinforce what I have said before. Kate and I have been fortunate in many ways since her diagnosis. The fact that both of us have been healthy is one of those. Both of us have had colds before, but it is more challenging at this stage of her Alzheimer’s. In the past it was easier for her to manage her own care with limited help from me. The only thing she can do now is blow her nose and spit out the phlegm that accumulates in her throat.

Despite this, her cold has not been especially serious. Her cough is still infrequent. She coughed just after going to bed and didn’t cough again until 1:45. She coughed on and off for about fifteen minutes and stopped. I haven’t heard any coughing until a few minutes ago, and it is now 9:30. What I do hear is her nasal congestion, but it is not constant. I’ve mentioned the sensitivity of the audio from the video cam monitor. Depending on the volume of the music I am playing in the kitchen, I can hear her breathing. When she coughs, I can hear it over any of the music I might be playing.

Apart from the cough and nasal drippage, the only sign of how she feels is that she seems more tired than usual. As I mentioned in a previous post, she slept until 2:00 on Tuesday. Yesterday, I woke her up at noon because she had a massage at 2:00 and a haircut at 3:15. She got along fine. When we returned home, she rested an hour and a half before I got her up for dinner.

She had more trouble working her jigsaw puzzles last night. Part of her problem is visual. Even when there is only one piece left, she has a difficult time locating where to put it. Each puzzle is on a solid-colored background. When the pieces are scattered, the background color is displayed where the pieces go. Thus, when there is only one piece missing, there is a picture with a rather glaring space colored like the background. To any of us, it would be immediately obvious where the last remaining piece should go. It isn’t obvious to her at all. Even when I put my finger on the piece and then on the spot where it goes, she often doesn’t know where to put it. One additional problem that is easier to understand is that she sometimes puts a piece in place but not precisely in place. Kate can’t tell that, and the app does not indicate that the puzzle is complete. Then she calls me. I locate the piece that is causing the problem and push it into place. Then she goes on to the next puzzle.

When she started working her puzzles a few years ago, she chose those with 42 pieces. Over time, I have selected the number of pieces for her. I dropped the number to 25, then 16. I think it is time to go 9 pieces. That’s the fewest available with this particular app. I hope that it will be easier for her after her cataract surgery on February 12.