Confusion Yesterday Morning

Kate woke up around 7:30 yesterday morning to go to the bathroom. She seemed rather alert. I didn’t ask, but she acted as though she knew exactly who I am. I realize, however, that appearances don’t necessarily jibe with reality. She went back to bed and slept until 10:30. This time she was confused.

I asked if she was ready to get up. She said, “I don’t know.” She didn’t look disturbed or frightened. It wasn’t the way she has been when she has had anxiety attacks. I asked if I could help her. She said, “I don’t know.” No matter what I said she said “I don’t know.” Then I suggested that she take a shower and that might help to wake her up. She didn’t want to shower.

I took another tack. I told her she should get dressed, and we could go to the family room where I might be able to show her something that would help. As she was dressing, she asked my name and her own several times. When she was finished, we went to the family room where I picked up the “Big Sister” album. We spent about about twenty minutes looking through it before going to lunch. She didn’t recognize the cover photo of herself with her brother. When we opened to the first page of pictures, she didn’t recognize herself, or her parents. As she has done in the past, she didn’t recognize her father after I identified her mother who was sitting with him. Although she didn’t show any improvement in recognizing her family, she did seem more comfortable than before. Her intuitive abilities were working.

As we drove to lunch, she seemed normal, and I was beginning to think she knew who I was. When we walked from the car to the restaurant, she asked my name. Similar moments like this over the past week suggest that she is close to losing the ability to remember my name and relationship to her. I am not expecting this to happen suddenly, but it is becoming more and more difficult for her to remember my name. I know it will only get worse. I still take satisfaction that she recognizes me as someone she trusts.

Yesterday on Twitter I exchanged several message related to the important of feeling safe among those living with Alzheimer’s. I am also encouraged that she continues to say that she feels safe with me. When this first started occurring, I didn’t know what to make of it. The more I have watched her decline and the more I have read, I have come to realize how frightening it must be not to where one is, who one is with, and “who I am?” I don’t think I would feel safe either.

When we got home, we had about twenty minutes before our sitter, Mary, arrived. Kate wanted to know what she could do. I showed her the three-ring binder with a lot of personal and family information. She was interested. When I left for the Y, she and Mary were seated side by side on the sofa going through the information. I was encouraged.

When I got home Kate was resting on the sofa while Mary sat in a chair across from her. Mary said that she and Kate had spent most of the time looking through the binder and then a couple of the photo books. She said Kate had been resting about an hour.

The rest of the day was uneventful. Kate indicated she was glad I was home and wanted to know “What next?” I told her it was time for dinner. When we returned home, she worked on her iPad until time for bed. She needed my help periodically but never showed any sense of frustration.

She got to bed a little earlier than usual but was still awake when I joined her an hour later. This morning she was up at 8:30 and took a shower. She didn’t show any signs of confusion or grogginess and acted normally toward me. I had her clothes out for her, but she went back to bed where she is resting/sleeping now. We don’t have any special obligations today. I will let her sleep until 11:00 if she doesn’t get up earlier.

The big event of the day actually comes tonight. Kate’s brother, Kevin and his wife, Virginia, are flying in for a short visit. Their flight doesn’t arrive until 7:00 this evening. They are renting a car and will meet us at the restaurant where I have made dinner reservations. Kate has changed a good bit since their visit in the fall, but I am optimistic that it will go well. I will be eager for the two of them to have some time together as they did on their previous visit. We have plenty of photo books to inspire good conversation. I am looking forward to having them with us.

A Good Day

After resting so much the day before, I hoped that Kate would be up a little earlier yesterday. I got my wish. I didn’t have to wake her. She wasn’t up early enough for Panera, but we did get to lunch shortly after 11:30. She was happy, and we enjoyed our lunch time together.

It didn’t surprise me that she wanted to rest as soon as we got home. She is doing that quite regularly these days. We had hair appointments at 3:00. About 2:25, I reminded her of that, and she got up right away. She took a little time to brush her teeth and use the bathroom, but we arrived for our appointments almost ten minutes early.

When we returned home, she worked on her iPad until time for dinner. That was a little over an hour. She continues to have trouble with the puzzles but did pretty well.

The best part of the day occurred at home after dinner. I have mentioned before that Kate often says, “That goes in the book.” She does that whenever we are talking about things that happened in the past. Almost a year ago, I jotted down a number of things that I thought were of importance to her. That includes the names of her family (grandparents, parents, brother and his wife, our children and grandchildren) our courtship and marriage, places we have lived and traveled, as well as a couple of letters I had sent to my parents when we were dating, one from Kate’s mother to my parents during that same period of time, and another from our son that he sent to us after our 50th anniversary. I put the information in a three-ring binder and included some family photos in the back.

After dinner, I asked Kate if she would like to look at it while I watched the news. She did and enjoyed it. It was difficult for her to read, and she asked me to read parts to her. I was pleased that she was interested. She hasn’t expressed much interest until the past few days. She prefers her photo books. I suspect her memory loss may play a part in the recent appeal of reading about things that have been so much a part of her life.

Going through the book gave a little more understanding of the challenges she has with reading and her photo books. For example, I read the letter from our son. I, of course, told her it was from Kevin. In addition, he talks about us and our marriage from his perspective throughout the letter. When I finished with “Love, Kevin,” she was almost in tears. She said it was beautiful and thanked me for writing it. It’s another illustration of the weakness of her rational abilities and the strength of her intuitive ones. She couldn’t remember that it was from Kevin nor pick up that it was from him by what he said. She was, however, able to pick up on the feelings expressed. She may have assumed it was from me since I read it to her.

Another example involved four photographs I had just added to the binder. One of those is of her grandmother that was taken in Lucerne, Switzerland in the mid-1930s. The other is one of us taken in the same spot in 2015. I had them enlarged to 8 x 10s so that she could see them more easily. I told her who the people were and asked if she noticed anything about where the pictures were taken. She didn’t understand what I was asking. I said, “Do you see anything similar about the two pictures?” It took a lot of help on my part for her to see they were taken at the same place. She would never have noticed without my help.

The other two pictures were of her mother taken on the boardwalk in Quebec City with the Chateau Frontenac Hotel in the background and one of Kate taken in the same place. Her parents had stayed at the hotel on their honeymoon in 1936. We stayed there our on our 41st anniversary in 2004. I went through the same routine with these pictures. I’m not sure she ever understood what they had in common. If she did, it didn’t generate any interest. She was, however, interested in the binder’s overall contents. I am glad about that because it gives her something else to enjoy besides her puzzles and photo books. I also intend to add more information. There is plenty of material I can add. The challenge is how to package it in such a way that it is not overwhelming.

By the way, I originally printed it in a 14-pt. font. I have gradually increased it to 36. I think that may be where I stop. She seemed to be able to read that.

A Day of Rest

Yesterday I left Kate with the sitter fully confident that they were headed to lunch. I had waked her moments before Cindy arrived. When she walked in, I said, “Your Monday lunch date has arrived.” Kate greeted her warmly. I left feeling like I had set things up beautifully and that they would have good time at lunch while I was at Rotary. The big surprise came when I arrived home.

Kate and Cindy were seated in the family room. Kate was looking through a TCU magazine. I got the impression that she had just opened it. I asked about lunch, and Cindy said they never got to lunch. Kate told her she wanted to rest. She apparently did so until near the time I got home.

I walked Cindy to her car and told her I was disappointed that Kate had not had lunch and that she had napped so long. I started to encourage her to be more assertive with her next time. Then she said she tried several times to get her up, but Kate preferred to rest. I told her that she did the right thing. I didn’t want her to force her. She suggested that next time I might walk to the car with them and that she might be more responsive to me than to her. I’ll think about that. I do think this particular sitter is a bit timid. I am sure the person she replaced would have gotten her there.

After Cindy left, I figured that Kate would be ready to get out of the house. It didn’t happen. She said she wanted to rest. She proceeded to rest for another hour before we left for dinner. When we returned from our Monday night Mexican meal, she worked puzzles for about an hour. Then we adjourned to our bedroom where she spent another hour looking through the “Big Sister Album.” This was the first time that I have been aware of her spending so much time by herself with the album. I usually look along with her but decided to see how she would do without my help. I was glad to see that she could appreciate what she was seeing; however, she did call on me frequently to identify people and to read some of the text.

I was a bit concerned about her having trouble going to sleep, but we went to bed at the usual time. After all the rest she got yesterday, I expect that she will be ready to start the day a little earlier today. I hope so, but I also sense that her recent erratic habits with sleep and rest are another sign of the decline she is experiencing.

An Early Morning Start Leads to More Sleep

Kate got up at 6:15 this morning. She went to the bathroom. Then she asked what she should do. I told her it was still early and thought she might like to go back to bed. She accepted my suggestion and stayed there until 7:30 when she got up again. I went to the bedroom to see if she needed anything. She wanted to know if she had something to do. She wasn’t specific, but it seemed like she thought she might have an obligation to be someplace. I told her the only thing on her agenda was to have lunch with Cindy. She is the sitter that I have tried to position as a friend who takes her to lunch while I go to Rotary. Of course, she stays longer than it takes for lunch, but Kate doesn’t have a sense of time.

Then Kate asked what she could do “right now.” I told her I could take her to Panera for a muffin. She liked the idea. As we drove up to the restaurant, she said, “We’ve been here before.” We stayed less than an hour before she wanted to go home.

When we got home, we sat down on the sofa in the family room to look at one of her photo books. I chose the “Big Sister” Album. We started with the front cover. I said, “Do you know who they are?” She pointed to the girl and said, “Moi.” Then I asked about the boy. She said, “My brother.” I asked if she knew his name. She said, “What is it?”,

We looked at a photo of her mother and father with Kate nestled in between them. I pointed to her mother and asked if she knew who that was. She hesitated a moment and then said, “My mother.” I asked if she knew her name. She said, “Kate.” I said, “That’s your name. She laughed, and I said, “Your mother’s name is Elizabeth.” Then I pointed to her father and asked who he was. She didn’t know but guessed that he was an uncle.

We didn’t get but a couple of pages before she said she was tired and asked if we could look at the album later. I told her that would be fine, and she lay down on the sofa. She said, “I might not see you for three hours.” I wasn’t surprised. She had gotten up much earlier than usual. She needed the sleep.

Our Easter

Since our friend Ellen had her stroke almost four years ago, Easter has been a bit different for us. For years she hosted her church choir for lunch at her house. That is now a thing of the past, and we have replaced that custom by eating at a restaurant. That makes it pretty much the same as other days.

The day started slowly when Kate didn’t want to get up. That is the second time in the past three days. She insisted that I go without her, but I told her I didn’t feel comfortable leaving her. This comes at the same time she is beginning to rest a little more in the afternoon.

We went to lunch at a place that has an Easter buffet. That has become more difficult for her, but I seated her before going to the buffet to get her food. This required two trips as it is a bit cumbersome for me to maneuver two plates around the four or five different serving tables and then back to our own. In addition, it required me to leave Kate while I went to a separate room where the buffet was located. The meal was good, but I don’t think I will do this again. It is much easier to go where there is wait service.

Kate was in a good mood despite her not wanting to get up. That’s one of the good things about memory loss. She quickly forgets moments like this. As we were eating, she said, “What’s your name?” I said, “Richard Creighton.” She repeated it. Then I said “And I’m your husband.” She gave me a dirty look and said, “I know that.” A few minutes later, she asked, “Are  we married?” I said, “Yes.” She said, “I thought so.”

We went home after lunch. Kate said she wanted to rest and remained in bed for almost three hours. By then, it was close to dinner time. As we drove out of the driveway to the restaurant, she said, “I like this place, but I’m ready to go home.” I said, “It’s always nice to be at home.”

As we approached the restaurant, Kate said, “Are you married?” I said, “Are you?” She said, “No.” She said, “Are you?” I said, “Yes. I married a sweet gal named Kate Franklin.” Kate said, “So we are married?” I asked how she felt about that. She said she was fine. I said, “That’s good because we’ve been married a long time.” Since we were close to the restaurant, we didn’t pursue it further.

On the way back, she said, “What can I do when we get home?” For the first time, it struck me that she said “home.” I hadn’t thought about it before, but I usually feel that she doesn’t know where we are or where we are going. I think I am right most of the time, but we do go directly home after eating meals. That must be stored deep within her memory.  I suggested that we look at one of her photo books. She thought that was a good idea, and we spent well over an hour looking at one of her father’s family. She enjoyed every minute but was getting tired. We adjourned to the bedroom where she worked on her iPad until it was time to go to bed. I have had to encourage her to get to bed many nights lately, but that wasn’t necessary this time.

Even though she was in bed a good portion of the entire day, we enjoyed ourselves. After we were in bed, we talked briefly about the day and agreed it had been a good one.

The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

Brief Conversation This Morning

Kate had just returned from the bathroom and got into bed. I pulled the covers over her and kissed her on the cheek. That led to the following conversation.

Richard:        “I love you.”

Kate:             “I love you too. <pause> And I don’t even know who you are.”

Richard:        “I’m Richard Creighton, and I’m your husband.”

Kate:              “What?”

Richard:        “I’m your husband. What do you think of that?”

Kate didn’t say anything. She just smiled and closed her eyes. I’ll take that as a positive sign.

Emotions

Most of the time since her diagnosis, Kate has been more sensitive to a number of things than she was in the past. For example, she was more easily frightened. I learned rather quickly to say, “Hello, I’m home.” as soon as I came in the house after being away. She has also been bothered by loud noises, especially sudden ones. Now that I have become more aware of the importance of her intuitive abilities, I am also paying more attention to her emotional responses to almost everything.

As a result, I have noticed a significant change in her emotions as she loses more of her rational abilities. She expresses her emotions in a stronger way than she used to. Here are several examples.

Since we eat out all the time, I notice this most often in restaurants. It’s not the general noise level. It’s the sudden noises that occur. The most typical example would be in a place like Panera where one of the employees comes around to pick up all the dirty dishes. He makes noise as he stacks them. The other night at Bonefish we were seated near the bar when the bartender knocked over a couple of glasses. Kate responded with a loud noise of her own. Several people at the surrounding tables took note. I told them she was all right. It could have been a time for one of my Alzheimer’s cards, but I didn’t think this situation called for that. Kate loves children, but sometimes they squeal or cry. She jumps and makes her own noise that is usually audible for those nearby. All of these things have been an issue for a long time. She is even more sensitive now, and her responses are more noticeable to others.

She is frightened by other things as well. She is very cautious when we walk up and over curbs and across streets and parking lots. One of the restaurants we frequent has a flagstone walkway leading to the restaurant. She often takes my hand and comments about how “dangerous” it is. On several occasions in a restaurant, she has mentioned how dangerous a welcome mat is. I think the big issue is her eyesight. I think she has a problem with her depth perception and thinks the shapes and colors represent different heights rather than being flat or close to it.

Other things generate more positive responses. Kate’s interest in children has increased lately. She almost always stops to say hello to the children she sees. A typical situation would be on our way in or out of a restaurant. In both cases, I usually lead the way. I look back frequently to make sure she is still with me. Often I see that she has stopped to talk with a child. She always tells the parents how adorable the child is. Like other things, this is not new except for the intensity of the emotion that she expresses.

As large a role as music has played in our lives, Kate seems to get even more pleasure now. I notice this most when we are in the car. After leaving Casa Bella the other night, I played a CD of Beethoven’s Piano Concerto No. 5. The first movement ended as we got home. On the way to lunch the next day, I played the second movement. We hadn’t heard but a few notes, and she said, “Oh, that is so beautiful.” It is beautiful, but this immediate response is something I would never have expected before. I’m not even sure that she recognized the piece. Of course, I am learning that her memory for music is far greater than I had thought. I am amazed at her recognition of so many pieces of popular music, including some lyrics, from the 50s and 60s.

I have alluded to her audible responses to music we hear at live performances like those at Casa Bella. The other night she reacted audibly to almost every song. She wasn’t loud. Only those sitting next to her or across from her could hear, but I keep wondering if this might become a problem in the future. It’s not a problem at Casa Bella since all of the people with whom we sit are aware of her Alzheimer’s. It could be a problem elsewhere.

Two other examples of her more intense emotional reactions occurred during the past week or two. One of those involved the fire at Notre Dame. The first time I mentioned it to her she had a strong reaction to the news. It looked as though tears were about to flow. Later she caught some of the TV news. By that time, she and I had talked about it several times. She never remembered from one time to the next. Each time, whether the source was the news or our conversation, she was quite moved.

Another illustration involves her parents and occurred in two different situations. When she has asked about her parents, I have never tried to hide the fact that they died some time ago. On at least two occasions recently, she has been very sad when I told her. That has led me to be more careful. When she asks where her parents are, I usually say, “In Fort Worth.” There are other times I tell her “they are gone, but they lived long and happy lives.” So far that seems to work. When she talks about them as if they are alive, I don’t tell her otherwise.

The other times she has an emotional reaction to them is when looking at one of her photo albums. In these cases, she is not sad because they are no longer alive. Her response is sign of her love for them. Sometimes she responds to me in a similar way when I tell her I love her. She gets a sad look on her face and tears well up in her eyes.

Alzheimer’s has definitely made her more emotional in her reactions. The fortunate thing is that she has not exhibited the kinds of emotional reactions that people sometimes associate with dementia. She has had moments of irritability that are unlike her, but I haven’t seen the slightest indication of anger or violent behavior. On the contrary, she frequently apologizes after she has said something that is a more irritable response than is characteristic of her.

Growing Confusion

I can’t say that I am observing any new symptoms of Kate’s Alzheimer’s; however, I sense that she is sinking deeper into confusion. The things I report below may sound familiar to you. Just try to imagine that the way she looks and the way she says things suggest something more serious than before.

One of those things is a more consistent failure to realize she is at home. She is routinely ready to take her toothbrush and toothpaste whenever we leave the house. I think she believes we are leaving a hotel. It is becoming commonplace for her to ask where we are when she wakes up.

It also involves an increase in the frequency with which she doesn’t know I am her husband as well as the length of time it takes for her to accept that I am. As we walked from the car to the restaurant for lunch day before yesterday, she said, “Who are you?” I said, “Richard Creighton.” She said, “I know that. Who are you?” I said, “I’m your husband.” She said, “Oh.” There was no other indication of surprise, uneasiness, or enthusiasm. She got the information she wanted and accepted it. While we were eating, she said, “Are you the owner of this place?” I don’t think I have mentioned this before, but she often attributes things to me with which I have no connection. The most common one occurs when we are listening to music in the car. She often says, “Is that you singing?”

At lunch yesterday, she asked my name and then hers. Then she asked, “Who are you?” When I told her, she didn’t believe me. I decided to tell her about our first date and our courtship while I was working at the funeral home. As I recited these experiences she began recognize them. Then I told her we would celebrate our fifty-sixth anniversary next month. I don’t mean to suggest that all her memories came back. It was just enough for her to accept that we are married. Then she asked if we have children.

She is much needier now. She is comfortable with Mary, our sitter; however, when I arrived home that same afternoon, Kate was especially glad to see me. She asked where we were and wanted to get away. She was was relieved when I told her we were at home. I don’t think she feels as comfortable asking Mary where she is.

On the way to dinner that night, she told me she really needs me. She has said this many times before, but it seems different now. Her facial and vocal expressions convey a greater need than the way she used to say it.

The other night after dinner, she wanted to know what to do. This, too, is becoming more common. I told her she could work on puzzles while I watched the news. She did that for almost an hour. Then she got frustrated. I suggested she look at her “Big Sister” photo album. She did for a while but stopped when I put on a DVD of Les Miserables.

Last night as we walked along the sidewalk to Casa Bella, she said something nice that prompted me to remind her that we have been together a long time. She asked how long. I told her almost 56 years since our wedding. She gave me a funny look and said, “Whose wedding?” I repeated that it was ours. She said, “No. You shouldn’t even joke about that.” This time I didn’t try to convince her as I did earlier at lunch.

There are lots of little things that suggest her increasing dependence. One of those is wanting to hold my hand more often than in the past. She frequently says, “I don’t need to, but I feel better.” She also wants my hand to help her in and out of the car and accepts my help buckling her seat belt. During dinner last night, she repeatedly asked me if her iced tea and water was hers. This is not new, but it is more frequent now. She is unsure of what is hers and what is someone else’s. She recognizes that she makes mistakes and doesn’t want to drink one that belongs to another person.

I have been eager to celebrate the many good times we’ve had since Kate’s diagnosis. I’ve also tried to be honest about the problems we have faced. We still have many good moments, but there is no escaping what lies ahead. It saddens me deeply to watch her slowly drift away like this, but I am heartened by hearing from others about precious moments with their loved ones who are farther along on this journey than Kate. In addition, I feel a greater resolve to make the rest of her life as fulfilling as I can.

An Unusual Start This Morning

I was taking my walk around the house this morning when I noticed Kate start to get out of bed. That was about 7:15. I went to the bedroom. She sat up straight and said, “Good Morning!” She had a big smile on her face and seemed unusually alert. She sounded as though she had been awake and up for quite a while. Of course, I knew she hadn’t. I walked to her side of the bed. She reached her hand out for mine to lift her into a sitting position with her feet hanging over the side of the bed. She said, “You know it’s funny.” Then she paused as she tried to think of what she wanted to say. I wish I could remember exactly what she said, but here is the gist of it.

She began to talk about school children. She said they are really smart, and they know they are smart. She said they wanted to learn. At first, she appeared to be talking about learning in general, but she moved into her specialty as an English teacher and use of the English language. All of her teaching was primarily with high school students, but it sounded like she was probably talking about elementary school students. It was never clear. She emphasized that their parents were eager for them to learn as well. She talked a lot about her relationship with the students and her efforts to build that relationship as a means to being a more effective teacher.

After a few minutes, I decided this wasn’t going to be a short conversation. I sat down on the bed beside her and listened. The only comments I made were facilitative ones. “It sounds like they really want to learn.” “The teachers really seem to care.” “It sounds like you’re doing the right thing.” There was a clock on the bedside table. When I first looked at it, the time was 7:20. We closed the conversation when it was 8:08. My intention was to see how long she would talk, but when she slowed up a bit, I asked what she would like to do “now.” She wanted to get dressed. I suggested a shower, and she accepted that. The conversation was over.

I found three things of interest about this conversation. The first was how alert she seemed to be from the moment I entered the bedroom. That is very unusual. She displayed no sign of grogginess at all. She was cheerful and alert. The second thing is that the way she spoke didn’t sound like the way she would talk to me. I never asked, but I’m not sure she recognized me. In fact, when I led her to the bathroom, she wanted me to leave before she took off her night gown. She apparently forgot that when I offered to start the shower for her because she took off her gown and got into the shower before I walked out.

The third thing is that the nature of her conversation was very much like what I have heard her say on other occasions. One of those times she was talking with the woman who gives her a massage. That time, however, she was talking as though she were a teacher in a school in another country. I’ve always thought it might be Africa or South America because those are both places where we have visited schools. It also reminds me of several dreams she had as far back as four or five years. She occasionally would talk in her sleep. She talked like she was speaking to a class and giving instructions.

It’s now 9:10. She is out of the shower and back in bed. I think I’ll let her rest until sometime after 10:00. I expect she will be back to normal although it is hard for me to know or say what “normal” is these days.