Social Situations

January 18, 2019January 19, 2019

A Day of Confusion

For the second time this week Kate did not recognize me when she woke up. These occurrences come only days after my saying that she almost always recognizes me as someone she knows and trusts. That is still true, but it makes me question my optimism as to how long this will last.

As I have seen so often, this failure to recognize me came with a mixture of other signs that she sensed more familiarity than her rational ability could express. She didn’t display any sense of surprise when I walked into the room. She appeared to respond to me as she normally does. Then she said, “Who are you?” I said, “Do you recognize me at all?” She said she didn’t, and I gave her my name and told her I am her husband.” She seemed more puzzled than usual by this news. She didn’t recognize either my name or that I am her husband.

At that point, I decided not to make this a point of discussion. I was confident that with a little time she would put it all together. I suggested that she get up and let me take her to lunch. She responded the way she always does and got up. She let me help her dress. She went to brush her teeth, and I went to the kitchen. In a few minutes, I heard her say, “Hey, where are you?” That, too, is very normal. She doesn’t know her way around the house and looks to me to tell her where she should go. As I walked toward the family room, I said, “I’m in the kitchen.” She was standing in the doorway coming into the family room from our bedroom and saw me. We went back to the kitchen where I had her morning meds waiting for her. When she had taken them, I picked up our iPads and cups and we left for lunch at Panera.

While waiting for our order, she asked my name. I told her and said, “I am your husband.” She seemed puzzled and asked how long we had been married. I told her. She didn’t question me. Instead, she asked me her name. That led to her asking if we have children. When I told her, she wanted to know their names. That led to further conversation about our marriage. I told her we had had many good times during our marriage. She agreed and asked me to tell her some of them. After that, I didn’t see any obvious signs that she didn’t know me.

We stayed at Panera about an hour and a half and then returned home where Kate rested almost two hours. Then we went back to dealership to pick up my car that I left the other day. When the service rep walked us to our car, I walked directly to my side. Normally, I would have opened the door for Kate and helped her get settled in with her seat belt. Before I got in the car, I looked back and she was standing at the rear of the car waiting for me to tell her where to go. It is very common for her not to know which side of the car she should use. I know this but had fallen down on the job. I walked her to the passenger’s door. Once she had gotten in she didn’t know where to put her cup. The service rep was waiting for me at the driver’s door. She is the same one I had given my first “Alzheimer’s card” two days before. If I hadn’t already given her one, I would have this time. There was no need now. She understood.

Last night was Broadway night at Casa Bella. Kate’s confusion continued. She was seated beside the woman whose mother started the restaurant almost 79 years ago. We sit with Signora Rizzo and her husband for all the music nights. We hadn’t been there too long before Kate leaned over to the Signora and said, “What’s the name of this restaurant?” Everyone at the table is aware of Kate’s diagnosis, and Signora Rizzo responded beautifully. She told Kate the name of the restaurant and that her mother had started it. She also gave her a little of the restaurant’s history. Kate was surprised and interested in what she had to say.

I’m not sure why, but it took longer to get our meals last night. Several times after we had ordered, Kate asked me if we had ordered and when we were going to eat. Finally, she said, “Does this place serve food?” Signore Rizzo, who was seated beside me, said, “I was wondering the same thing, Kate.” We have always enjoyed sitting with this couple. The way each of them responded to Kate last night is consistent with the kind of people they are. I hope we have many more music nights together.

These little public incidents of Kate’s confusion are trivial. No one was embarrassed or disturbed, but they do make me wonder what lies ahead.

December 16, 2018

Some things work out without much effort on my part.

Although I try to avoid or minimize making any morning obligations, I have not eliminated them entirely. One of those occurred last week when I had to go for my labs at the doctor’s office. Another occurred yesterday. I had made plans to take Betty Shiffron, a church friend, to see La Traviata at one of the Live in HD at the Met performances. Kate and I usually eat at the Bluefish Grill on Saturday, and it is short walk to the theater. The last time we did this was in the spring just before Kate began sleeping so late in the morning. I told Betty we would pick her up shortly after 11:00 unless Kate were having any trouble getting up. I was concerned that I might have a problem, so I decided to start early. When I went to the bedroom around 9:00, I found that Kate had already gotten up. From there it was smooth sailing. We even had enough time to get her a muffin at Panera before leaving for Betty’s house.

We had a very pleasant lunch although it seemed to be a more challenging experience for Kate than I expected. She wanted to be engaged in the conversation but had trouble understanding what we were talking about and remembering things we had already said. Quite a few times, she said things like, “Who are you talking about?” or “What are you talking about?” It didn’t present a problem for Betty and me, but I felt sorry for Kate. Betty is not as accustomed to being with Kate and is not as sensitive about her difficulty following conversations. It was a “sink-or-swim” experience for Kate.

The Live in HD at The Met performances significantly increased Kate’s enjoyment of opera. Although we had attended operas before then, I think she went more for my benefit than hers. Seeing opera on the big screen with the camera work that brings the viewer up close has made her enthusiastic. She has changed a lot since the spring, and I wondered how she would respond. Several years ago I had a “walk-on” role in La Traviata when a European opera company came to Knoxville. In addition, Kate and I attended a performance of the opera in Zurich during our last international trip in 2015. I didn’t expect her to remember the opera, but I did hope that she might recognize some of the music. She did enjoy the music, but the overall experience was not what I had hoped. She was very confused about what was going on. During the first intermission, she wanted me to explain it to her. It was simply too complex for her to grasp.

This was a good illustration of the fact that the intuitive” part of her mind still values “rational” thinking. I had wanted her to focus on the music which I knew she could enjoy and not worry about the plot and precisely what was going on. This is not something that is new at all. That is what is behind her efforts to know people’s names, where she is, and what they are saying on the news. It is easier for me to let go and let her enjoy life through her intuitive abilities than it is for her. Situations like this are good reminders to me that there is an intersection of the rational and intuitive processes.

After the opera, Betty wanted to take us to get ice cream. When we entered the shop, there were only a couple of open tables. I took Kate to one and asked her to stay with the table while we ordered. While we were in line she left the table and approached us. She never went back to the table. I’m not sure whether it was a result of confusion over what I had asked or that she felt more secure being near us. I think she was confused. I do know that she frequently is confused by almost any instruction she is given.

Similarly, at dinner I asked her to take one of two tables while I went to the counter to order. She wanted to go with me. When we walked to the counter, she wanted to go to a table. This is also a common occurrence. At one moment she wants one thing. The next she wants something else.

As I mentioned in a recent post, she is beginning to have trouble with words in her speech. Last night as we left dinner, I played a CD in the car. She said, “They wear this a lot.” I said, “What?” She said, “This song. They put it on a lot.”

Despite these things, we had a very nice day. Being with Betty was also good for both of us. She is 90 and quite fit and very active. She is also a big talker and speaks quickly. She also walks quickly. It was a good finish to a week of social and musical experiences.

December 11, 2018

It began with a scream and ended with music.

About 4:30 yesterday morning, I was awakened with a loud scream. Kate had a bad dream. She was unable to tell me about it but was very frightened. This was a time to comfort her. I held her and told her she was all right, that she was safe and that I would take care of her. She calmed down and dosed off within fifteen minutes.

This was not the first time she has had a bad dream. Fortunately, they don’t happen often. Most of the dreams I have been aware of have been good ones. Until the past couple of years, she would talk while dreaming. They were always in a situation in which she was teaching children. I could easily see this as an outgrowth of her years as a school teacher and librarian/media specialist.

I stayed in bed until 5:10. I decided to let Kate sleep. She had responded so well to Valorie’s getting her up, showered and dressed last week that I felt comfortable letting her take care of her again. Before leaving, I told Kate I was going and that Valorie would take care of things. She seemed perfectly comfortable with that, and I left feeling good.

When I returned later in the afternoon, Valorie and Kate were in the family room having a serious conversation. They were talking about students and teaching. At least Kate was. Valorie appeared to be listening. I was pleased to see they were getting along well. They were talking as two friends might do. I am still surprised, but glad, that Kate is willing to let her help with her shower and getting dressed.

We ended the day with an annual Christmas dinner with music at Casa Bella. It was a wonderful evening. The meal was outstanding, and the conversation lively although it was hard for Kate to keep up. She couldn’t hear or understand much of what was being said. She frequently asked me to tell her what people had said. As I have been doing lately, I cut her meat (a very tender beef tenderloin) for her. That is something new within the past couple of weeks.

This was another bitter sweet occasion for me. I can’t predict the future, but I know that next Christmas will be very different from this one. I am glad that it went well. Kate and I both loved the music, and we ended the evening singing Christmas carols. We don’t know most of the sixty or guests who were there, but we are accustomed to seeing them for these musical nights throughout the year. It was a beautiful shared experience for everyone.

December 5, 2018

A Good Day

Yesterday morning, I walked into our bedroom at 11:00 to check on Kate. She looked like she was asleep but opened her eyes as I approached her. She smiled and asked, “Who are you?” I said, “Would you like to guess?” She said, “My husband?” I said, “We’re off to a good start?” She smiled. She asked my name and then hers. I told her and said I would like to take her to lunch. She said she was hungry but needed her clothes. I pointed them out to her and asked if she wanted to shower. She didn’t. That helped us get ready more quickly than usual.

She was in a good humor and showed a good understanding of my personality. As we walked out of the house, she spit on the floor of the garage. Then she said, “I know that bothers you.” I said, “What makes you think that?” She said, “You like everything just right.” I don’t say much about this, but she frequently says things about me (mostly my OCD tendencies) that are right on target. It continues to amaze me that her feelings for people and things are so strong even as her memory fades.

At home, in the car, at lunch, and the balance of the day, she frequently asked, “Where are we right now?” As I have said before, this is a common experience. It just occurred more yesterday.

The weather this week and next is supposed to be cold, so I wanted to get her a couple of new sweaters. I took her to a department store not far from the restaurant where we had lunch. I had mentioned this before lunch, and she frowned. She doesn’t care much for shopping. It could be that it is too confusing for her to look at her options and make a decision. After lunch I didn’t tell her where we were going. I just drove to the store. We got out and went directly to the sweaters. I picked out three things in the right size and asked how she liked them. They were fine. She wasn’t excited about having new clothes, but I felt better than we have more options now.

We had dinner with friends we had met at Casa Bella on their Broadway nights. We have gotten together with them on several other occasions. Kate was less active in our conversation than the three of us, but she enjoyed herself. We will be with them this coming Monday night at Casa Bella for their annual Christmas dinner and again next Wednesday for a concert a short drive from Knoxville. It’s good for both of us to expand our social connections.

When we got home, we watched a series of YouTube videos of Christmas music sung by the Tabernacle Choir. She was enthralled by them. When I turned off the music, she talked about how much she enjoyed our being able to share in the music together. As I helped her get ready for bed, we had another special moment. She thanked me “for all you do for me.” She said she thought we were a good match for each other. It wasn’t until she said, “I think we are going to make a good team.” that I realized she was talking as though we were not married but anticipating it. She was optimistic about our future together and stumbled over her words. I said, “Do you mean ‘mature together?’” She said, “Yes, we’re going to mature together.” Then she mentioned that she was going to want children and thought I felt the same way. As we got into bed, she said, “This is the first time I have felt like a real grown up.” She continued to talk about how good she felt about us. It was interesting that she never asked my name, her name, or the names of her parents. She was absorbed in our relationship, and so was I.

November 28, 2018

Signs of Christmas

It’s beginning to look and feel a lot like Christmas. Our neighbors across the street started their decorating the week after Thanksgiving. When we returned from Texas, we noticed that the neighbors next door and one other put theirs up while we were gone. The past couple of years I haven’t done anything except to join all the neighbors in putting up a tree near the street in the front yard. All of us do that every year.

This could very well be the last Christmas that Kate and I will celebrate in a typical way. I felt like we should do more than in the past few years. I discovered that the wife of the man who has been helping to clean up the dead shrubs around the house is a former florist and decorator. I engaged her to put up greenery with red bows outside in each of the front windows. She also put garlands with white lights down the railings on either side of the front porch. I showed her some of the other decorations that Kate has used in the past. She use those along with a few new things and decorated our family room and the bay window in the kitchen. It is not elaborate but attractive. Kate was happy with what she had done. So was I.

Our church sponsored a Christmas luncheon for seniors that we attended yesterday. We were supposed to be at church at 11:15 to catch a bus to the restaurant where it was held. That made me a little nervous since it can easily be 11:30 or noon before Kate can get ready. Fortunately, that was not a problem. I woke her around 9:30. She got up easily, and we were there in plenty of time. I was happy about that because we have been very irregular in our church attendance for at least a year. I believe it is good for both of us to maintain our ties. This luncheon was a good opportunity with a group of people we have known for a long time.

Kate handled herself well as usual. After we arrived, I left Kate with a couple of friends while I went to a table to make name tags for us. I was gone only a short time when I noticed that she was looking around the room. I knew she was looking for me. I walked over to her. She said, “I didn’t know where you were.” The only thing I know that she couldn’t handle was how to answer a woman’s question as to where she lives. She turned to me and asked me to tell her. This was a woman we don’t know well and probably doesn’t know about Kate’s Alzheimer’s. She must have thought it strange. We had a brief conversation with another woman Kate didn’t remember. The woman said she had trouble with names herself. Then Kate proceeded to tell her she has the same problem. She went on to describe how she turns to me, points to someone she should remember, and asks me the person’s name.

We came back home after lunch. Kate rested for about almost an hour before we left to get our hair cut. They cut Kate’s hair first and then mine. Kate worked on her iPad while I was getting my hair cut. When I was through and ready to leave, she was in the middle of a puzzle and wanted to finish. I sat down with my iPad and did a little reading. The next thing I knew thirty minutes had passed. I asked if she were ready to leave. She said she wasn’t. She had gotten comfortable and was enjoying herself in much the same way she does at Panera or Barnes & Noble. I waited a few more minutes and then told her I thought it was time to go.

From there, we went to Target where I was looking for a hanger for the wreath for our front door. They didn’t have what I needed, but Kate walked very patiently through the store with me and back to the car.

It was getting close to dinner time, so we went to eat before going back home. We had a nice dinner. Then we returned home and relaxed until 9:00 when we started getting ready for bed.

Kate’s brother and his wife arrive from Texas this afternoon. As we left the restaurant last night, I reminded her of that. As I expected, she hadn’t remembered and asked their names. We went through them a couple of times. Then she asked when they were coming. When I told her this afternoon, she asked, “Where are they staying?” I told her they were staying in a hotel near us. She had a look of relief as she realized she didn’t have to do anything to get the house ready. I was pleased to see that. It is one of the few signs I have seen suggesting that she might feel some responsibility for taking care of things like that. Something similar happened yesterday afternoon. We drove up to our house, and I said, “Look at all the leaves, and (the person who cuts the grass) was just here last week.” Kate said, “I guess I’ll have to get out and rake them.” She has done a little raking in the past but never often. I was surprised that she assumed it would be her responsibility.

November 23, 2018

Thanksgiving Day

We had a nice day. It was a little different from past visits. For the second day in a row, I had to wash clothes before leaving the hotel. I am sure this is one of the things that discourages many caregivers from traveling with their loved ones. During the morning, we remained at the hotel until time to get to Kevin’s for the Thanksgiving meal. Kate was especially relaxed. After being awake around 6:30, she went back to sleep and didn’t get up until I woke her around 10:30. We were here last in May. That was just before Kate’s sleeping became more erratic. Since then it has been difficult to plan things before noon or 1:00. I stayed in touch with Kevin concerning our progress in getting ready, and we arrived at his house pretty much on time.

We got off to a good start. Kate seemed very much herself and greeted our son and his family as she always has. Rachel’s parents, Lila and Jerry Livingston were also with us. I know Kate could not remember them, but she carried off the initial moments quite well. It wasn’t until we were eating that she seemed to work hard to be a part of the conversation. It’s hard for me to explain, but she didn’t seem like herself. She was like a child seeking attention. At one point, she made several impolite remarks to Lila, and even suggested that Lila might be lying. The rest of us were silent. No one knew quite what to say. The fortunate thing is that everyone is aware of Kate’s Alzheimer’s and has been around Kate long before the diagnosis. I feel sure they understood this wasn’t Kate speaking. It was the Alzheimer’s. It was similar to the way she was in a conversation at Barnes & Noble a week or two ago. I hope this doesn’t become a habit. If it does, I may have to create some small cards explaining that she has Alzheimer’s. I could slip them to people we encounter in public situations.

The experience also reminded me of a book written by Martin Schreiber, My Two Elaines. His choice for a title emphasized the personality differences between his wife before and after her Alzheimer’s. Until recently, I hadn’t experienced anything like this with Kate. As with so many things, I wonder what lies ahead.

Following lunch, we turned on the Cowboys/Redskins ball game. For twenty or thirty minutes, Kate looked through a photo book of Kevin’s family trip to several national parks in the West. Brian, Kevin’s son, explained what she was seeing. She went through the entire book and enjoyed it. After that, she withdrew from the group. She rested in her chair with her eyes closed for a long time. I doubt that she was asleep but may have dosed periodically. After a while, I went out to the car and got her iPad and brought it to her. She is usually quick to accept it and work on it for a long period of time. That wasn’t so yesterday. She simply kept it beside her.

Coincidentally, I was involved in a short Twitter exchange this week that involved the challenges of being in groups for people with dementia. I commented that Kate does best with just one other couple and even better one-on-one. Yesterday’s experience adds to all the other changes I have noticed over the past few months. It even makes me a bit more cautious about our plans to be with Jesse and her family for Christmas.

After eating some of the leftover turkey and brisket, we came back to the hotel. Kate quickly got into her puzzles on the iPad. I checked email, Twitter, and started my draft of this post. I tried to find the last of the football game on our TV but stopped on the Discovery Channel instead. We both enjoyed the featured program on animal behavior.

Kate seemed to be herself. She was tired and got to bed a little earlier than the past few nights. She is still sleeping now at 7:50. I think we will take it easy this morning. I’ll be in touch with Kevin about possibilities for lunch and the afternoon.

November 9, 2018

Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

September 14, 2018

An Interesting and Very Nice Day

Despite the fact that Kate was up at 6:00 yesterday, she was in a very good mood all day. In that respect, she was nothing like she was the day before. In fact, except for a little normal confusion immediately after getting up, she displayed relatively few of the obvious signs of her Alzheimer’s the way she has done in the past. She did ask my name once or twice at Panera but not once the rest of the day. In addition, she also mentioned our grandson, Brian, by name in an afternoon conversation without my saying anything to prompt her. She didn’t asked me where we are or the names of anyone else. She did ask me the name of the restaurant where we had lunch two or three times while we were there.

Of greater significance, is that we had a very good conversation when we got home after lunch. This is one of those times I wish I had a better memory. I would love to tell you exactly what she said. I’ll do the best I can to capture the moment.

As we drove up to our house, she said, “I remember this place.” I couldn’t be sure of what she meant. Right before this, she was talking about Madison. Did she think this was our place in Madison or simply that she recognized the house we live in now. Once in the house my uncertainty continued. She said something similar about the family room when we walked inside.

She was especially drawn to the back of the house and the trees on the property of the neighbor who live behind us. We sat down in the family room. Each of us had an iPad, but she continued to talk. I wanted to listen and support the conversation. She talked about our years in Madison when I was a graduate student. She commented about it’s having had a great impact on both of us. She said it was a time when we both grew up. Much of what she said comes from things I have said to her in the past, though not recently.

As in most other conversations, she talked about our marriage and how fortunate we have been, but there was something very different. In recent conversations, she has sounded like a nervous talker, just chattering away. This time she was so very normal and thoughtful as she spoke. There was no sign of concern or worry or fear about her memory loss. In many respects, she seemed quite normal. There was one difference that has become more common recently. The struggles with finding the right words to communicate what she wants to say. Often she says, “You know what I mean.” In most cases, she hasn’t told me enough for me to know. I find myself guessing what it was she wanted to say. More than half the time I guess after a few attempts. Other times, I don’t. Then she either drops the point she wanted to make or she goes on with the larger message she is talking about.

I found the conversation to be as rewarding as I found other recent ones to be sad. It was a good reminder that changes are not usually abrupt. They are gradual. They begin with something that happens on a single occasion and gradually become more commonplace.

We ended the day at Casa Bella for jazz night. We both enjoyed ourselves though as on other occasions, Kate was very quiet. There were six of us at our table, and four of us are talkers. Kate and one other woman tend to be on the quiet side.

I would love to see another day like that today.