Contrasting Social Situations and Kate’s Response

It seems that Kate’s current behavior is, in part, related to the situations in which she finds herself. Yesterday, she reacted very differently to two social situations. The first was lunch with our senior pastor. As I had done when we met my Twitter friend last weekend, I made sure that she was seated directly across the table from him. He was also good about including her in our conversation. Kate responded accordingly. He and I did most of the talking, but she was also an active participant. Both of us enjoyed our time together. I doubt that our pastor could see much difference in her since we had lunch together two to three months ago.

Last night was an altogether different experience. We went to Casa Bella for Broadway night. We sat at a table for ten, and the talking was louder than usual. Often when we arrive there is only one other couple with whom we sit each time. That enables her to establish a comfort level. Last night, we were the first ones there. Shortly after, the rest of the group arrived. I think this was overwhelming for Kate even though everyone was good about speaking to her.

While we were waiting for our server to bring our meal, Kate started looking around the room. She looked very concerned. She said, “Where did she go?” I said, “Who do you mean?” She said, “The woman who came with us.” I told her it was just the two of us, that nobody came with us. She didn’t seem convinced.

Until the food arrived fifteen minutes later, she was very uncomfortable. She said that she was looking for her food. I told her they were preparing it, and it would be coming soon. She continued to be very bothered and wanted me to speak with the server. At one point, she caught the eye of our server and motioned for her to come to her. Before she could ask about our meal, I told the server we were fine, and she walked away. Kate’s distress continued until the meal arrived. Then she devoted her attention to eating.

On a typical music night, Kate would have loved the music. She did respond well to two or three numbers but expressed little enthusiasm for the overall program. The singers were outstanding, but they sang a lot of Sondheim’s music. It was not as melodic as she likes. She was glad when we left.

The whole experience made me wonder what the future holds in terms of our attendance at these music nights. They have played an important part in our lives for the past six or seven years. Last night, she did not enjoy herself the way she has in the past. She seemed to be bordering on causing a scene because her food had not arrived when she thought it should. I’ll just have to play this by ear in the future. If we are going to continue sitting at a large table, I may experiment by getting a table for two. Crowds appear to be a growing problem.

Changing Times

Kate and I were in Nashville this past weekend to visit our friend, Ellen, who now lives in memory care. We stayed in a hotel overnight to have a leisurely morning and lunch before visiting her. For most of the day, Kate was not herself. She slept later than I expected or wanted. When I got her up, we had less than an hour before checking out and our reservations for lunch. I tried not to rush her, but she felt rushed nonetheless. Her response was different than usual. I am always concerned about her having a panic attack, something that hasn’t happened in several years. Instead, she seemed frightened and pulled herself away from me a couple of times as I helped her with her clothes. I asked if I had scared her, and she said no.

When we got to the restaurant, she was friendly with the people she met. That is not unusual, but the way she spoke to people outside and inside the restaurant sounded like someone who might have had a little too much to drink.

She got along well once we were seated at our table, but her eyesight caused a few problems. She didn’t recognize it was bread in the bread basket. I picked out a couple of pieces and put them on her bread plate along with some butter which was already soft. In a few minutes, she picked up the butter with her hand and put it in her mouth. Apparently, she thought it was a piece of bread. She didn’t care for it and put it down, but she had a glob of butter on her fingers. I tried to help her wipe her hands on her napkin. I first explained what I was I was going to do, but she was confused and didn’t understand. That shook her up for a minute or two.

We both went to the restroom before leaving. When she came out, she had a paper towel in her hand and dropped it on the floor of the hallway. She apparently didn’t see where to deposit it in the bathroom. As we left, she told everyone goodbye in much the same manner as she had done when we entered.

The big surprise of the day came after we had arrived at Ellen’s memory care facility. We sat down with her in the activities room which was vacant at the time. This time we found that we could understand even less of what Ellen said than the last time. Very quickly Kate played a role that was very different than on our other visits. She took the role of caregiver. Ellen was the one she was caring for. She spoke to her as though Ellen were a child, and she was her caregiver. The tone of her voice was very much like that of an adult talking to a small child. She held Ellen’s hand and discovered that it was cold. She proceeded to explain how Ellen could rub her hands together to warm them up. It was much more of a leadership role than she would normally take. Although Ellen has great difficulty speaking, she seems to understand us quite well. She looked a little puzzled and almost laughed a few times as Kate took charge.

We tried to converse for over thirty minutes before I decided to pull out my iPad and play a few YouTube videos of Rodgers and Hammerstein musicals from past BBC PROMS concerts. Initially, both Kate and Ellen were interested. Then Kate saw a few small pieces of debris from a plant in the center of the table. This started a re-run of an experience she had the night of our anniversary dinner in Knoxville when she mistook the tiny bread crumbs as insects and took pleasure in trying to catch them moving. She did exactly the same thing at Ellen’s. The difference was that she became much more absorbed than she had on our anniversary. She completely tuned out of the YouTube videos to watch “the insects.” She was fixated on them for the next 10-15 minutes. In the meantime, Ellen went to sleep. That left me as the only one watching the videos.

I looked at my watch and saw that it was close to the time for a guest to lead the residents at their Sunday afternoon music time. I suggested we join the crowd. What happened then was my biggest surprise of the day. As we walked in, the woman in charge of the program was playing the piano while the residents and a few staff sang. Kate very quickly joined in. She not only sang; she also danced. The leader played a series of very upbeat and familiar tunes to a group our age. Most of them, however, were further along in their dementia than Kate who became the most active participant. Periodically during the songs and at the end of a song, she said in a very loud voice “Woooooe.” It was loud enough that no one could miss it. A mother and her two teenage daughters were standing near us and got a kick out of Kate’s participation. I am sure the leader was pleased. She probably would have liked everyone to respond in a similar way.

So how did I feel about this? I was pleased. It was good to see her enjoy herself so much. As I have mentioned before, she and I often sing in the car. Sometimes I can push her into dancing a little at home, but she was completely unleashed at Ellen’s. Her filter was off. She responded the way she felt. I liked that, and in this situation it was perfectly acceptable. I would have felt very differently if this happened at one of our music nights at Casa Bella. In Ellen’s memory care facility it was one of our joyful moments.

At the same time, I was sad because this was the first time in a public situation that Kate behaved so much like a person with dementia. Until recently, she has gotten along well. In casual contacts, most people would never suspect that she has Alzheimer’s. That is changing now. She seemed a little like the residents around her. Kate is not at their stage yet, but all the signs suggest she is not far away.

Another Social Experience

Kate and I are in Nashville today where we plan to meet our friend, Ellen, who is in a memory facility here. Because Kate sleeps so late in the morning, we came yesterday afternoon to have dinner and spend the night before our visit this afternoon. I have found that works better than rushing her in the morning so that we can make it a day trip.

For the second time in two weeks, I had arranged to meet another Twitter friend, Joan, who lives on the east side of Nashville. We met at a Cracker Barrel about 3:15 and chatted for a little over an hour before going to our hotel. I am glad to say this was another social situation in which Kate was quite at ease and talkative. It was as though she had been yearning to talk with someone and found a good listener. Once she started, it was hard for her to stop. It was good to see her so engaged in conversation.

As I reflect, I think there were several things that made our meeting such a success. First, there was just one other person with us. That meant there was no distracting conversation that can occur when there are four or more people. Second, the way we were seated lent itself to more conversation between Kate and my friend. When we took our seats, I deliberately put Kate directly across the table from Joan. I sat beside Kate. Third, Joan is a very warm, friendly person. She immediately gave her attention to Kate who became a key person in the conversation. Fourth, one of the good things about initial meetings like this one is that people discover things they have in common. It wasn’t long before we learned that Joan had been a librarian. That opened the door for Kate to talk about her own experience in the field.

Since Joan and I have been Twitter friends, I would have enjoyed talking more with her about her own experience as a caregiver as well as her blog. I was glad, however, to let that go in order for Kate to have such a good experience.

There were a couple of other things worth noting. One is how well Kate was able to communicate without having a memory to draw on. Of course, that means that some of the things she said weren’t really true. For the most part, Joan probably didn’t notice though I did. Much of the conversation didn’t require much in the way facts. Kate could talk about her feelings for her work and her family.

The other thing is that Kate’s Texas pride has increased substantially in the past few years. As we were walking out, someone overhead Joan’s voice and asked where she was from. When she said, “Nashville,” the man told her she didn’t sound like it. Then she said she was originally from Long Island. That began a somewhat more extended conversation between the two of them. While they were talking, Kate tried to interrupt them to ask the man to guess where she was from. It was very much like what a child might do. I got her to hold back for a minute. When she finally asked her question, he said, “Where?” She couldn’t remember. I was standing behind her and whispered, “Fort Worth, Texas.” She repeated it in perfect timing. He might not have noticed her slip.

I was very glad that we stopped to meet Joan. My own purpose was to meet face to face with a woman I had known only through brief tweets. The bonus, like our meeting two weeks ago, was seeing how much Kate enjoyed herself.

Social Situations

Yesterday we were in two different social situations. The first was at lunch. The other at dinner. Kate responded to the two of them quite differently. Coincidentally, both occurred at Casa Bella.

We had lunch with a friend, Lillian, who is with the health foundation on whose board I served for nine years. Kate has met her on several occasions but can’t remember her. That didn’t matter. She got along quite well. We got off to a good start when we went inside the office to meet Lillian. We were warmly greeted by the receptionist whom I hadn’t seen in quite a while. That was followed by another staff member who passed through the reception area. We chatted briefly before Lillian came out. I should add that most of the staff is aware of Kate’s Alzheimer’s and have always been attentive and kind to her. When Lillian walked out, she was carrying a small basket of flowers for Kate who was thrilled to have them.

Although our lunchtime conversation involved a good bit of talk about the foundation, Lillian was good about speaking directly to Kate. That was especially true at the outset. That enabled Kate to feel she was an integral part of the conversation. I asked Lillian to tell us about her recent experience with neck surgery. One might think that it would have been difficult for Kate to follow and understand. I am sure that it was; however, she did grasp that Lillian was out of the office a while and that the recovery was not easy. Her eyes filled with tears as she reached out to take Lillian’s hand. Kate was touched.

A little later, Lillian invited us to an open house at a camp for deaf children supported by the foundation. She explained to Kate that we had paid for a number of children to attend. Kate was touched by that and wants to go.

Except for the few times she picked up or pointed to her glass of tea and asked if it was hers, an observer might not have recognized that she has Alzheimer’s. Lunch was a good experience for her.

Dinner was quite different. I think she was confused from the start. Although we sat with the same couple we always sit with, we were joined by three other people. At first, I was seated diagonally across from Kate. That meant that she forgot where I was several times. I moved to be next to her. She forgot that I always order for her and was nervous about ordering herself. I told her I would take care of it, but she couldn’t remember. She repeatedly picked up a separate bar menu and tried to read it. One time she asked the woman next to her to read it for her. Each time I explained that it was the bar menu and that I was taking care of or had ordered her meal. Once we had ordered and the menus were removed, she didn’t have to worry about that anymore.

Then we faced two additional problems. First, the noise was so great before the music started that it was hard to hear what others at the table were saying. In addition, Kate was in the middle seat of the three seats on our side of the table. No one was seated across from her. The noise was the greater problem, but I am sure she felt alone because of the seating arrangement.

The second problem of the evening was the music. It was jazz night. The musicians were outstanding, perhaps the best we have heard there. Typically, however, the program includes a predominance of old standards with the vocalist playing a central role. Last night, it was almost entirely instrumental. I think there were only three standards. Kate didn’t seem unhappy, but she didn’t express any of the enthusiasm that she normally does.

On the way home, she was fine. The contrast in the two situations was striking and illustrates the kind of situations that are easier for her than others. I may need to be more sensitive to this in the future. It is also possible that we might drop the jazz night before I feel the need to do that for the opera and Broadway nights. Coincidentally, I spoke with a church friend yesterday morning. She had mentioned our getting together for lunch. She said something about inviting a couple of other people. I told her that Kate does best with just one or two people besides us. I’m glad I said that.

Kate and Conversation

Like other caregivers I know, I often miss the kind of conversations Kate and I used to have. Much of our ordinary conversation requires remembering things she can no longer retain in her memory. All is not lost, however. Caregivers learn to talk about things that their loved ones can also talk about. On an average day, I’m not sure that Kate and I talk any less than we did before Alzheimer’s, but the content of those conversations is different and repetitive. We are both happy with this approach.

Social situations can be very difficult for people with dementia. I wish I could fully understand what’s going on in Kate’s head when we are in large groups. I know it can be very confusing for her. Saturday we attended an 80th birthday party of a man who had been a close friend of my dad’s. There was a large crowd, and we knew only three people besides Dad’s friend. It was wall-to-wall people. She sat in a chair and was mostly silent the hour or so we were there. Withdrawing is one way to handle situations like this. I stood by her the whole time to prevent her being anxious.

My brother, Larry came over for the birthday party. We had planned to go out to dinner with him, but the weather kept us inside that night. We ordered a pizza and ate right here at home. I can’t remember the last time we had done that. I would say at least six or seven years.

We hadn’t seen Larry in quite a while. He and I immediately entered into a conversation that wasn’t of interest to Kate. She worked on her iPad until we ate dinner. I felt bad about that. Fortunately, the conversation took a different turn over pizza. Larry has a farm and brought some fresh blueberries for Kate. That led to a conversation in which he pulled out his phone and showed us pictures of his blueberry and raspberry plants as well as his asparagus. At first, I thought this might not be of interest to Kate, but she seem quite interested. She even asked questions that got Larry talking more about the farm. Again, I felt Kate’s interest might be short-lived, but she seemed quite engaged. I know it was impossible for her to follow everything he said, but she didn’t tune out. It turned out to be a good experience. My own view is that she was an important part of the conversation. She wasn’t being overlooked the way she had been before dinner. I let the two of them talk together while I cleaned up the dishes. I was happy to see her enjoying herself.

Yesterday morning, Larry, who had spent the night at a hotel, came back to the house around 9:45. That gave us some time to catch up on a variety of things that would have been of little interest to Kate. She slept until almost 11:00. Then the three of went to lunch. Everything went well until the end of our meal. As we were talking, Kate got confused over some of the things Larry talked about. At times, I tried to interject and explain. It was a time when it appeared that she really wanted to understand but couldn’t, and her confusion escalated. I feel reasonably sure that at that point in the conversation she didn’t know that Larry was my brother. She asked him directly, “Who are you?” I explained that he is my brother. She asked him his name, and he told her. I can’t remember, but she may have asked mine as well. She must have because I remember her asking my last name. She didn’t realize that I had the same last name as Larry. (That is not unusual. It is typical. This happens all the time when we are going through her family photo albums.) The server dropped by the table. She and Larry talked a bit. Kate pointed to Larry and asked me who he was. When I told her he was my brother Larry, she said, “What’s his last name?” When I told her, she burst out laughing. The server asked what was funny. Kate said, “His last name is Creighton.” She said this as though it was a silly name. Then, looking at the people at the table across from us, she said something about his name. I don’t remember what she said.

Despite her laughter, Kate was irritated with my brother. I can’t explain it. I have a hunch that she somehow felt like an outsider to our conversation. She was rather abrupt with him and made some reference to the way the two of us (Larry and me) act when we are together. She was not in a good humor as we made our way to the door. When we got outside, she immediately apologized to Larry and said something like, “You’ll have to forgive me. I’m trying to not to be this way.” It was as though she were carrying a grudge from the past. I don’t understand.

When we got in the car, she told me she didn’t want to talk. I told her I would turn on some music that she would like. I didn’t say a word until we got home. When we were a few blocks away, I reached over and squeezed her hand and held it a moment or two. She squeezed back and smiled at me. She was herself again.

This was the first time I’ve seen her respond this way with anyone. It wasn’t just a momentary reflex. She was bothered over a period of minutes. She was obviously offended. My best guess is that Larry and I drifted into a conversation that was of greater interest to us, and Kate felt excluded. This will make me more sensitive about conversations in the future. I don’t want Kate to feel this way again.

Changes Abound

Since Kate’s diagnosis, she has declined very gradually, imperceptibly at each moment but clearer at the end of each year. The pace stepped up about a year ago and again in the past few weeks or months. I lose track. For a long time, she and I have rehearsed the names of people we will see when we go out. Recently, she seems more concerned about remembering them. I am not surprised. It is impossible for her. She doesn’t do well repeating them back in our “rehearsals” in the car. The desire to get them right, however, is still strong even though most of the situations don’t require the use of names at all.

Last night was opera night at Casa Bella, and I did something different as we met people we know on our way in and as others who came in after us. Typically, I have said, “Kate you remember Paula and Bill” or whomever. This time I simply said, “Kate, this is Paula and Bill.” To me it took the emphasis off of her failure to remember and gave her the sense that she was meeting them for the first time. From her perspective, she was. All of the people I introduced know about her Alzheimer’s and have been very kind to her. I am sure each one recognized that I was trying to be kind to her myself.

That wasn’t the only difference last night. She is also getting more insecure about doing the right things when we are out. Even though I have been ordering her meals for years, she has started taking an interest in looking at the menu. It’s hard for her to read, and she gets frustrated with all the selections. She then turns to me and asks what I recommend for her or says, “What am I going to have?” Of course, she can’t remember my answer. That requires asking multiple times. Last night was the first time I recall her doing this with other people present. When she asked, I said, “I think we should get the veal piccata. It’s always been our favorite.” She said, “Order for me.” She asked at least a couple of additional times before our server took the order.

Something else occurred, but no one else would have noticed. I was seated diagonally across the table from her during the music. I noticed her looking very carefully at the man directly across from her. She was puzzled. She looked to her left and to her right. In a moment, her eyes caught mine. She gave a very subtle sigh of relief. Then she smiled. I knew that she didn’t know where I was. She was uneasy. I have definitely become her security blanket.

Yesterday in an email to my friends Tom Robinson and Bruce Morton, I mentioned something about Kate’s frequently overlooking food on her plate. I often point out half a sandwich or a significant part of her entrée that she hasn’t eaten. This is an issue with her eyesight that seems to be a result of her Alzheimer’s. Her ophthalmologist hasn’t located anything in her eyes that should account for it. There is something else that plays a part. She never remembers what I order or what she is eating except when she sees it. She forgets between bites. Thus, she lacks a memory that might clue her into recognizing she hasn’t eaten her entrée. This happened just this past Saturday. She had eaten half of her sweet potato fries before I reminded her of her salmon. She hadn’t remembered it, and she didn’t notice even though it was right in front of her.

It is impossible for us to fully understand what it is like for someone with dementia. We can only try.

The Challenges of Conversation

Kate has always been adept at handling conversations in ordinary social situations even though she is a bit introverted. Her mother was very gifted in the same way. In addition, she grew up in a large family, many of whom lived in the same town and went to the same church. Her life was filled with many experiences that enabled her to develop her conversational skills.

The skills she developed over the years served her well when Alzheimer’s entered the picture. She was able to get along quite well without feeling insecure or revealing her Alzheimer’s to other people. That has gradually changed over the years. She is now handicapped in three ways. First, the loss of memory deprives her of a significant amount of information that is useful in conversation. Think a moment. When you bump into a friend or acquaintance, you are usually able to call them by name or remember the connection you had with that person (someone you worked with, played bridge with, was a member of your same book club, etc.). You probably remember if that person is married, has children, has a particular interest, and many more bits of information. When Kate encounters someone, she has none of those things to go on.

The second deficit she has is that she has difficulty understanding the conversations in which she finds herself. That leaves her unable to follow up on something the other people have said. These days her participation is heavily oriented to questions that ask who or what is being talked about and asking for explanations of the content or specific words. Her vocabulary has decreased significantly. That has to add another measure of confusion.

Third, dementia makes it harder for a person to process information. It is never easy to understand what is said, but it is especially difficult given the normal speed with which people speak. While Kate is trying to process the first bit of information someone is saying, the other person is already on to the second, third, fourth, or fifth bit of information. It is simply overwhelming. In restaurants where Kate experiences most conversations, there are also many distractions that occur simultaneously. The noise level itself can present a problem understanding what others in your party are saying. Sometimes a serving tray overturns or the server comes to the table to take your order. All these things make it hard for Kate and others with dementia to process information.

I’m thinking of these things because Kate and I had dinner the other night with a couple we know from our music nights at Casa Bella. Apart from sitting with them at Casa Bella, we have eaten out with them at least six or eight times in the past eight months. Two of those times were overnight trips to Flat Rock, NC, where we had dinner and attended a show at the Playhouse. She cannot remember them at all. I’ve never seen any sign that she recognizes them – even intuitively.

That night we went to a new restaurant and had an excellent meal. The other couple and I are the talkers. The restaurant was very noisy, and we sat near a server’s station where they dropped dirty dishes on top of one another. Kate hardly spoke during the entire evening. I believe the only words she spoke were questions regarding the menu or for clarification about something that was said. We ordered a cheese and hors d’oeuvres platter. Her vision problem prevented her being able to identify some things. Kate and I shared a large platter of paella for our entrée. She liked it but said nothing about it. I worried about how she was getting along, but there was simply no way to make the situation much easier for her. When I asked how she enjoyed the evening after we left, she said it was a nice evening. By that time, I’m not sure she could even remember what it had been like.

That is just one of a few other similar occasions with friends. It is just one more marker on this journey. I am grateful that she has gotten along so well in the past, but I don’t like the direction in which we are moving. In addition, it feels like the changes are coming more quickly now.

This afternoon we are visiting our longtime friends Tom and Angie Robinson in Nashville. I will be eager to see how that goes.

Insecurity at Casa Bella

Yesterday was not a typical day. Kate seemed to be in a cheerful mood, but she was also irritable off and on throughout the day. I observed that very early when I told her I thought she should shower before getting dressed. It had been four days since her last one on Sunday. Each of the previous mornings I had encouraged her but let it go when she resisted. I did the same yesterday.

We commonly hear about anger and violence as symptoms of people with dementia. There is another school of thought that suggests that such behavior is not a direct symptom itself but a bi-product of symptoms like confusion and misperception. According to this interpretation, anger and violence are or can be natural responses to the way the brains of people with dementia work (or don’t work).

If I employ this line of thinking to what happened between Kate and me yesterday, I would say that Kate wasn’t just in a bad mood, she may have been responding to the way I told her it would be good for her to take a shower. In fact, I don’t believe I was as gentle in my suggestion as I usually am. If I had thought of a gentler way to do it, she might have willingly agreed to shower. Instead, she dug in her heals. I didn’t push her.

I told her I had her clothes for her, and she thanked me. When I started to help her dress, she was resistant. She said, “I can do that myself.” Ultimately, she had to have my help with her bra and her pants, but she was determined to be as independent as possible. As I helped her, she snapped at me. Then she felt bad and said, “I’m sorry. I shouldn’t have said that.” She clearly understood that was not typical for her. I think her reaction related to my not being gentle enough in my attempt to get her to shower.

While she went to the bathroom to brush her teeth, I went to the kitchen to get her morning meds. Shortly, I heard her call, “Daddy!” I called back from the kitchen, but she didn’t hear me. She called again. “Daddy!” I walked toward the bedroom and said, “Here I am.” This was a time when I thought it was best not to tell her that I am her husband. When I reached her, she looked a little frightened and said, “I didn’t know where you were.”

As we drove to lunch, I played some music that she likes. She didn’t talk much. When she did, it was to comment on the music. She enjoyed it. We had a pleasant lunch. It was as if the problems getting up had never happened. The afternoon also went well. We spent a couple of hours at home. She worked on her iPad a while and then rested on the sofa. After her rest, she wanted something to eat. It was ninety minutes before time to leave for opera night at Casa Bella. I took her to Panera for a bagel. We got home in time to change clothes and leave for dinner. That’s when another problem occurred.

I made a complete change of clothes and had picked out a different top for her. She didn’t want to change and snapped at me. I tried not to push her. She consented, but she wasn’t happy.

As usual, she enjoyed the evening of music. The man with whom we share a table commented several times about her enthusiasm. He and his wife got to observe an example of Kate’s memory problems when she looked at me and said, “And what is your name?” I said, “Richard.” She frowned. I knew that meant she wanted my full name and said, “Richard Creighton.” She frowned again. I said, “Richard Lee Creighton.” That was the right answer.

The biggest problem of the day occurred just before we left. I was seated across the table from her. The seat to my left was empty. I was seated with my back to the singers and moved to the empty seat and turned halfway to the right so that I could see them. When the program ended, I looked at Kate who was disconcerted. She looked at me and said, “Is that you?” It turned out that she had lost sight of me even though I was only four feet diagonally across from her. She was quite relieved to see me.

The man in the seat to my right got up, and I started to follow him out. He stopped to help his wife with her walker. The two of them were standing between Kate and me. I chatted briefly with a man at the next table. When I finished, I went around the couple to see Kate. That’s when I saw that the couple and another man who had been at our table were trying to comfort her. She had been very disturbed because she didn’t know where I was. When she saw me, she said sternly, “Don’t ever do that to me again.” I am sure the three people who were trying to soothe her were shocked that these words expressed so strongly came out of the mouth of someone they had no doubt viewed as very soft spoken.

It amazed me that she had become so anxious in such a short span of time. It couldn’t have been more than a couple of minutes. Of course, with no perception of time, it could have seemed much longer to Kate. I was standing within six feet of her the whole time, but she couldn’t see me. I apologized and told her I would never leave her. As we walked through the restaurant to leave, she continued to be a little upset. My apology must have been too light-hearted because she said, “This is no laughing matter.” By the time we got to the car, she was fine. I played several pieces of music she loved on the way home. That made her even happier. The crisis was over.

It is obvious that Kate’s insecurity is increasing and that I am her “security blanket.” I also think the events of the day illustrate how much her emotional reactions are tied directly to her perceptions of the events around her. Her rational abilities are not working well enough understand what is going on. That misunderstanding leads to insecurity that is sometimes expressed in behavior that is not typical of her.

Ken’s Arrival

Like so many things, especially when it comes to airline travel, Kate’s brother, Ken, and his wife, Virginia, experienced a delay in their arrival yesterday. We were to have had dinner with them last night, but their flight didn’t get here until close to 9:00. I regretted not having that time with them but invited them to drop by our house on the way to their hotel.

They arrived at the house just after 9:30. Kate and I were in the family room when I heard them at them at the door. I got up to greet them. Kate stayed in her chair where she was working a puzzle. Ken and Virginia entered the family room ahead of me and said hello to Kate. They hugged, and she greeted them warmly. Everything seemed perfectly normal. It was a beautiful reconnection with her brother.

We talked about the day’s travel experience and laughed. They were both able to take it in stride. We caught up with their children and grandchildren. We talked a little about our courtship and a letter that her mother had sent to my mother talking about our “friendship.” There were times when Kate was confused and asked for clarification and spoke very little. Otherwise, she was enjoying the conversation along with the rest of us.

After an hour, Ken and Virginia left for their hotel. As soon as they walked out, and I had closed the door, Kate whispered to me, “Who are they, and what are they doing here?” I told her their names. She didn’t recognize them. Then I explained that Ken is her brother, and Virginia is his wife. I was floored that Kate had not realized this. She must have spent the entire time without knowing who they are.

This experience is a good illustration of a couple of things. First, it shows that even someone (me) who knows her condition best makes mistakes in judgment. I know that her memory is gone, but in many ways she still seems very normal to me. That often leads me to expect more of her than I should.

Looking back, I see that I didn’t handle the situation the way I should have. We had been sitting in the family room for over an hour without my reminding her that they were on the way and would be here soon. Of course, she forgot about our earlier conversations about their upcoming visit. I can’t remember exactly what I said when I heard them at the back door. It was probably something like, “They’re here.” That would mean nothing to Kate. In my haste to welcome them, I didn’t even walk ahead and tell Kate, “Your brother Ken and Virginia are here.”

The experience is also an example of how poor Kate’s memory (rational ability) is and how well she is able to handle a social situation through her intuitive abilities. Ken and Virginia are well-informed about Kate’s current decline. I am sure they noticed some changes since their last visit. On the whole, however, my guess is that they didn’t sense just how poor her memory is. I will be eager to get a chance to find out today.

A Different Day Yesterday

Kate has been unusually cheerful the past two weeks. Yesterday was different. It’s not that she was in a bad mood. She just wasn’t especially cheerful. Getting her up earlier than usual may have had something to do with that. On the other hand, it may have been one of those things that we can never explain.

We had a busy day that started with my appointment for labs prior to seeing my doctor next week. Until the past year, I have always had the earliest appointment I could get. Since Kate sleeps later than she used to, I have changed to 11:00. That is still early for Kate, but I am eager to eat as soon as I am up. I woke Kate at 9:15 in order to give her time to get ready without rushing too much. It was one of those days when she didn’t want to get up. She told me to go on without her. I told her I didn’t want to leave her alone. I apologized for getting her up and explained the reason. She still didn’t get up. I asked her to do it for me. She agreed and did so well getting ready that we had time for a quick stop for a muffin at a Panera not too far from my doctor’s office.

From the doctor’s office we went directly to lunch with one of our associate pastors. We had a nice time, but Kate was not very talkative and cheerful. She actually snapped at me as I offered my hand to assist her in getting up as we were leaving. She had a hangnail on her left thumb and thought I was going to grab it. It was a nice lunch, but Kate wasn’t at her best.

We had a couple of hours before taking her for a massage. She rested at home most of that time but got up easily when I told her it was time to go. The past couple of times she has said she didn’t want to get a massage. This time she didn’t say a word. She went happily.

Two weeks ago when she had her last massage, I talked with one of the staff in the front office. I told them I thought we might be coming to the end of her massages. I told them I would like to try at least once more. We talked again this time. Kate had been so accepting that time, I thought it would be good to try again. I scheduled yesterday’s appointment. When I went back to pick her up, I waited a few minutes. Then the woman who gives her the massage came out and told me that they had finished, and she had left Kate to get dressed. When she went back, Kate was lying down on the table and had not dressed. I went back and helped her. She was confused. I don’t think she realized that she was supposed to get dressed. When she was ready, we walked back to the front desk where I discreetly cancelled the next appointment. I don’t plan to schedule any more.

The highlight of the day came when we returned home. Kate noticed the photo of her and her brother on the cover of her “Big Sister” album and said, “I just love that picture.” She commented on the smiles of the two children. I said, “Do you know who they are?” She did. I asked if she would like to look through the book. For the next hour we went through most, but not all, of it. She expressed more enthusiasm than she had all day.

I continue to find mystery in the way her brain works and doesn’t work. As we looked at pictures of her family, she sometimes recognized her mother, father, and brother. Other times, she had no idea who they were. Often she looked at two pictures of her father that were side by side on the same page. She asked, “Who is he?” I told her, and she asked, “What’s his name?” I told her. Then she looked at the other picture and asked the identical questions. We went through the book for an hour repeating these questions and answers. Of course, some of the confusion involves the fact that the way people look changes significantly over time, but the big problem is Alzheimer’s. I’m just glad she had that hour to really enjoy herself.

Last night we went to Casa Bella for jazz night. That is always a hit. She enjoyed it, but the experience wasn’t as good as usual. We always sit with the same couple. Often no one else joins us. If so, it’s just one other couple. Last night we were at a table with seven other people three of whom we hadn’t met before. This made conversation a bit more challenging. Kate was quieter than usual. She enjoyed the music, but I am sure she was uncomfortable in the larger group.

Looking back, it wasn’t a bad day at all. It just wasn’t like the ones we have had recently. Most days are very good. I’m sure we will have many more in the days ahead.