Thought for the Day

Yesterday morning I saw this tweet from Judy Cornish (The Dementia Handbook). She is a vocal advocate of the importance of tapping into the intuitive abilities of people with dementia. I believe this particular tweet is also relevant for our other social relationships.

Whenever I am with someone experiencing #dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy.

Cornish also quotes Maya Angelou who said, “People will never forget how you made them feel.”

Three in a Row

The other day I mentioned one of the statistical measures related to my blog. The first three years following Kate’s diagnosis, I averaged 64 entries a year. In 2018, I had 549. That was up 232% from 2017 when I made 236 entries and 412% over 2016 when I made 133. I suggested that this increase was mostly related to the actual changes in Kate’s Alzheimer’s. I simply had more to write about.

In that post I also mentioned that I have a few other measures as well. The only other one I think is especially relevant involves the various categories to which I assign each post. I assigned the most, 246,  of the 1361 posts to the category “Good Things/Good Times.” That is 18.1% of all my posts and contrasts with only 62 (4.6%) I coded negatively (“Bad Times).

I should add that many of the other posts contain specific items that could have been assigned to either category. I chose, however, to assign a post to one of these categories when I thought the central message was either “Good” or “Bad.” I don’t intend to go back through all the posts and get a more precise measure of the ratio of “Good” to “Bad” incidents, but I suspect I would find the figure for each would be closer together. That’s because I have included many specific symptoms that I might want to consider negative. I believe the way I put posts in categories is a stronger measure of my “feelings” about the way things are going even with the negative things than happen all the time. Let me give you an example.

Yesterday Kate and I went to our usual Saturday lunch at the Bluefish Café. It wasn’t long after we took our seats that Kate asked, “What is my name?” When I told her, she wanted to know my name and then how we were related. This is the kind of conversation that has become commonplace. I suspect most people overhearing our conversation might interpret it as a bad thing, very sad. That’s the way I felt the first few times she was unable to remember our names. Even now, I view her memory loss as sad; however, I interpret the whole conversation quite differently. We were having a good time. There were things she wanted to know, and I was glad that I could be the one to tell her.

After we had eaten and paid the check, we had an especially tender moment. It started when she wanted to know her parents’ names. Then she wanted me to tell her something about her mother. We held hands across the table as I told her she had a very special mother and explained why I felt that way. I talked about her kindness to people and her years as a volunteer teaching adults to read. I also told her about her mother’s having taught Sunday school for almost forty years and what a good friend she had been to so many people. She loved hearing about her mother. When I paused, she said, “Did I get to know her?” I told her she did and that her mother loved her dearly. I reminded her of photos we have of her and her mother and that the love was visible in mother’s smiles. Then I said, “And the best thing is that when she was no longer able to take care of herself, you got to care for her during the last five and a half years of her life.” I told her about her managing a staff of paid caregivers, coordinating her medical care, as well as preparing meals. She was so happy, and, as so frequently happens these days, her eyes filled with tears. I was touched by her response. It does make me sad that her memory of her mother is virtually gone, but it makes me happy to know that her feelings for her are still alive and that I have the opportunity to fill in the details she no longer remembers.

If that were all that happened, I would say we had a very good day. As it turned out there was more. When we got home, she asked what she could do. I suggested we spend some time together in the family room. I mentioned her photo books and that she could look through some of them. I pointed to the “Big Sister” album on the table between our two chairs. She picked it up and sat down to look at it. I stood behind her as she flipped the pages and read the text for her and identified the people she did not recognize. She was entranced and went through the entire 140 pages. Her brother Ken will be glad to hear that this is a gift that keeps on giving. It is a gift to me as well. I enjoy the photos, but I am especially happy just being with her in such happy moments.

Yes, we’ve had three good days in a row. I guess you know the category in which I’ll file this one and why. <g>

Another Good Day

I guess I was so happy about our previous day that yesterday’s posts didn’t mention that Kate showed almost no signs of a cold. Wednesday was her best day in the past two weeks. I was relieved that we had avoided anything more serious. Yesterday she was even better.

It was the second day in a row that she got up early, took a shower, and went back to bed. This is a time when I could have let her stay in bed longer, but I wanted to have lunch with her before the sitter arrived. I was glad I did. We had a nice lunch and were back home in time for me to set up the TV in our bedroom with YouTube videos. I chose Andrea Bocelli. I also showed Mary how to search for other videos if they wanted something else. Kate said she wanted to rest a while and got in bed.

While I was at the Y, I checked the video cam several times. Each time they were still in the bedroom watching videos. The same was true when I returned home four hours later. Kate had been up a while and was fully engaged with the music. So was Mary.

Setting up the TV for YouTube or DVDs before I leave has become a regular thing now. That seems to have replaced their afternoon trip to Panera. I still mention the possibility of their going to Panera, but Kate isn’t responsive to that. Yesterday was an exception. She was excited about going but wanted to rest first. After resting, she only wanted to watch Bocelli.

Because my primary focus is on Kate, I don’t say much about other things I do while the sitter is here. Of course, I have my Monday Rotary meeting and my trip to the Y on Monday, Wednesday, and Friday, but I also meet my friend Mark Harrington every Friday afternoon at Starbucks. We hadn’t met the past two weeks because of Kate’s cold. In both cases, I had forgotten to let him know I wasn’t coming. That’s just one of the things I discover that I have slipped up on lately. I find more things slip through the cracks than they used to. I know some of that might have occurred just because of my age, but I feel sure that my responsibilities for Kate also play a large part.

Anyway, it was good to see Mark again. He’s an interesting man, and we always have a lot to share. He is the one who takes care of the technical issues in connection with the blog. Right now he and I have been working on a book I am editing. The first half consists of three and a half years of emails that I wrote under my dad’s name after his stroke that left him unable to use his computer. The second half is devoted to over 100 pages of Dad’s own biographical notes that he had written for a writing class he attended several years prior to his stroke. We’re close to printing time now. When it is finished, I plan to give copies to the family and a few close friends. That would have happened long before now if I hadn’t found it difficult to work in with my other responsibilities.

Every few weeks I also meet with a church friend whose daughter was diagnosed with frontotemporal dementia in her fifties. We met for coffee Wednesday afternoon. Our experiences are vastly different. Talking with him underscores how fortunate Kate and I have been not to have other complicating factors beyond the illness itself. Despite our differences, we also have a lot of common experiences. I enjoy being with him. I hope our lack of complications don’t make it less enjoyable for him.

While we were out for our Friday night pizza, we bumped into one of my long-term clients and his wife. They sat down with us and chatted about forty-five minutes. It was good to catch up with them. Kate also enjoyed it. These experiences continue to reinforce my belief that the primary benefit of eating out is that it is a social occasion. Most importantly, it is the type of social occasion that Kate handles quite well. The time is short. We exchange pleasantries and are on our way. It is good for her and for me.

We Take So Much for Granted.

Most of the things we do during the course of an ordinary day we do without even thinking. We’ve learned to do what is appropriate in the vast majority of situations. We come to this through explicit and implicit training from parents, teachers, and everyone else around us. To be sure, the daily news is filled with the most egregious violations of customs or the law, but most of us abide by the norms most of the time. It’s through our rational ability that we learn to follow the rules for both big and little things.

As I have noted before, dementia robs a person of that rational ability. People with dementia often say or do things they would not have done prior to their disease. We generally understand this, but caregivers are always facing new things we didn’t expect. That happened to me tonight.

As Kate prepared for bed, she walked into the bathroom. She saw a tube of toothpaste, picked it up, lifted her arm, and motioning with hand signals asked if she should put it under her arms. I explained that it was for her teeth. Then I showed her the deodorant and told her that was for under her arms. Moments later I saw that she had put toothpaste on her neck.

Although I was surprised, Now that I have reflected a bit, I find her question understandable. This is a sign that she is reaching another stage of her Alzheimer’s. Things like brushing her teeth and using deodorant are regular habits that we do automatically. That is a strong habit for Kate and has lasted a long time, but even that is now fading away. Earlier in the day she had given me the same hand signals without lifting her arm. That time I correctly thought she was asking if she should brush her teeth. Like most habits that weaken, the process is usually a gradual one. I am sure I will see more of this in the future.

A Very Good Day

About 7:30 yesterday morning, the video cam alerted me that Kate was getting out of bed. I went to the bedroom and walked her to the bathroom. At first, she took my hand but then felt secure enough to walk without it. She did need me to show her the way. When she came out, I asked if she needed fresh underwear, and she did. I helped her with that, and she got back into bed. As she did, she looked at me and said, “I’m sorry you have to do all this for me.” I find it very touching when she says things like this. It makes me wonder just how much she senses the seriousness of her situation. It is clear that she recognizes she has a memory problem and that she is dependent on me. She almost never displays any sense of anxiety or distress; however, I do sometimes think that she recognizes that something is wrong with her. Later in the morning she said something else that struck me the same way.

I thought she might sleep until I woke her around 10:30 or 11:00. I was quite surprised when she had gotten out of bed at 9:30. I went to the bedroom and helped her get dressed, and we were at Panera before 10:00. This was the first time we had been there before lunch in quite a while.

It was a day when she had a lot of questions. They were all the usual ones, just asked a whole lot more. She had other questions as well. Instead of being bothered by her constant questions, I found that we had a good conversation. It was a time when she seemed eager to learn things that she had forgotten.

It began as she was working a puzzle of a picture of colorful tulips in The Netherlands. She turned it around for me to see. I said, “It reminds me of the trip we took during the tulip season.” She said, “How could we afford that?” I told her that we both had been working and had saved our money for the trip. She had forgotten that she worked and asked me what she did. That led me to tell her about her majoring in English and teaching English for three years and becoming a school librarian after getting her second master’s degree. She was quite interested and, at no time, did I sense that she remembered any of this.

The conversation took various turns as she asked questions that redirected me from one thing to another. She asked me to tell her about her parents. She continues to hold strong feelings (all positive) about them, but almost never recalls their names. She didn’t yesterday, but she sometimes asks me if I knew them.  As the conversation moved along, she asked where we were. I told her we were in Knoxville, Tennessee. She asked me to repeat it slowly two or three times.

Then she said, “I’m smart, you know, but I’m stupid.” I was surprised and asked what she meant. She said, “Forget it.” I told her I really wanted to know. Then she said she didn’t know what she meant. I asked myself, “Could she maintain a long-term sense that she is smart but recognizes how bazaar it is for her to repeatedly ask questions about things she should know?” I would love to know exactly what she thinks and feels.

We went back home for a short break before going to lunch with our pastor. This, too, was quite a good experience for both of us. He and I did most of the talking, but Kate also enjoyed it. His daughter is an undergraduate looking at a possible career in neurology. We talked a lot about the brain. I am sure much of this was puzzling to Kate, but many of the things we said involved music and its effect on people with Parkinson’s and other brain issues. There were plenty of things that she could appreciate even if she didn’t fully understand.

Kate  had a massage at 3:00, and we went to Casa Bella for opera night at 6:00. Last night’s program and musicians were especially good. Kate loved the evening. What a nice day we had. Who would have guessed this would be possible eight years after her diagnosis? Her rational abilities are very weak. But her senses are still working. They provide great pleasure for both of us.

Grasping to Remember

Kate’s memory has been worse this week. When she got up day before yesterday, her memory was as bad as the two previous days. She repeatedly asked the same questions – “Who are you?” “Who am I?” “Where are we?” She didn’t express any frustration as she asked. She did so quite naturally as though she were asking someone else where they were from.

We talked without ceasing at lunch. That is unusual. It would start with one question and lead to another. For example, I had given her our names and relationship. Then I said something about our children. That led her to ask questions about them, their names, where they live, etc. I mentioned her family, and she asked me to tell her about her mother and father. As I mentioned different pieces of information, that led her to ask further questions. That meant I kept giving her more and more information. Of course, that was overwhelming for her. It was actually a beautiful conversation because she was so interested in knowing about her family. At one point, her eyes were filled with tears as I told her about them.

When we got in the car to return home, she said, “You’re probably going to have to tell me all this again.” She said she would never be able to remember. I told her that would not be a problem, that I would remember for her. I asked if she remembered the nickname she had given me. She didn’t. I told her it was “MM” for “My Memory.” She not only didn’t remember, she didn’t understand what it meant. It took a while for her to understand.

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.

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.

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.

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.