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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.

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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.

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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.

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A Few Things From Yesterday

Kate woke up at 5:00 and said, “Hey.” I looked over and saw her looking at me. I asked if she needed help. She said, “Where’s the thingy?” I asked if she wanted to go to the bathroom. She did. After she got back in bed, I was wide awake and decided to stay up.

Around 8:30, I noticed on the video cam that she had gotten up. When I reached the bedroom, she was just coming out of the bedroom. She seemed awake. I asked if she was planning to get up for the day. She said she was. I asked if she was going to take a shower. She shook her head to say no. Then she said, “Do you want me to take one?” I told her it would be a good idea, that she had missed one the day before. She said, “Okay.”

After the shower, she went back to bed and slept for an hour before I woke her. She wasn’t eager to get up but did so anyway without lingering or protesting.

I took her to the hair dresser’s at 2:00. I was about to offer her my hand as she stepped onto the walkway but realized there was less than a two-inch elevation from the pavement. I said, “I was going to offer you my hand, but there’s not much of a curb here.” She took my hand and said, “That’s all right. I wouldn’t know where to go without it.”  Afterwards as we walked out, she said, “Take my hand.” I did, and she said, “I don’t really need it, but I feel more secure.”

I see signs of her need for security in other things she is doing. A good example is that she more frequently asks me what she can do when we get home. I guess it is getting harder for her to remember what her options are. That is similar to her waiting to follow me each time we get home. She never remembers where to go. With few exceptions (I can’t remember any.), she always asks me where the bathroom is.

We had about two hours to pass before leaving for dinner. We spent the first hour relaxing in the family room. She started out working on her iPad. After less than thirty minutes, she put it down, closed her eyes, and rested in her chair for another thirty minutes. I told her we had another hour before dinner and asked if she would like to go to Barnes & Noble. She hesitated. It looked like she thought I might want to go. I told her I was fine staying at home. She did as well. This is becoming more common now. For such a long time, she rarely wanted to spend much time at home. Now as she is feeling the need for rest, she is less likely to accept an opportunity to go out. It’s just one more sign of how she and our lives are changing.

We ended the day with dinner at Bonefish Grill where we had a good social experience. We ran into a man who was a very good friend and admirer of my dad. They had both been students in a writing class for several years. They struck up a friendship that lasted until Dad’s passing in 2013. It was an interesting relationship since this friend is just one year older than I am and 26 years younger than my dad.

He was with his significant other who has dementia and just moved to Knoxville from New York City. She has been quite involved with the performing arts and had a neighbor with her who operates a ballet school. The conversation broke down into one between the dancer and me and Kate and our friends. I was glad to see Kate so actively involved in conversation. I don’t know what she said, but at one point she turned to me and asked how long we had been married. Our friends had obviously asked her, and she didn’t know. We both left the restaurant feeling energized. Eating out continues to offer us such experiences.

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A Slow Day Yesterday

Kate has gotten up early on four or five days over the past two weeks. On the days when I felt I needed to wake her, I haven’t had any trouble. That changed yesterday when I tried to get her up for lunch with the sitter. She wanted me to leave her. I could, of course, have let her continue sleeping, but I felt she had slept enough. In addition, she hasn’t been as accepting of Cindy’s getting her up. On two occasions when I have done that, she has remained in bed too long. Once she didn’t get up at all while Cindy was here. The other time she got up so late that she didn’t have lunch until 3:00.

By the time I got her up and dressed yesterday, Cindy had been here over twenty minutes. When I got home, Kate was on the sofa resting. I’m not sure how long she had been there. She continued resting while I put up a few groceries and checked email.

At dinner, she asked if I knew what she was going to do when we got home. I said, “Go to bed?” She said, “That’s right.” I told her I suspected she would get her second wind after dinner. That is what usually happens. As we drove home, she said, “What can I do when we get home?” I told her she might like to work on her puzzles. She liked the idea and did so for almost an hour as I watched the news.

Later when I told her I was going to take a shower. I suggested she come to the bedroom with me. She started to follow me but went to the bathroom for the guest room next to ours. I went to look for her when she didn’t return. I found her in the guest room under the covers with her clothes on and the light off. I suggested she come into our bedroom. She came with me.

I put on a DVD of Les Miserables. She sat down in her chair with her iPad. It wasn’t long before she put the iPad down. She started to put on her night gown. Then she got in bed and lay down. She had been very lethargic all day, but she didn’t go to sleep. She was still awake when I got in bed an hour later.

It was another day when she wasn’t cheerful. She just seemed tired, but it was also a day when she appeared to know me as her husband. As we drove home from dinner, she said something about my being a creature of habit. I said, “You think you know me pretty well.” She said, “I should.” I said, “Do you know my name?” She didn’t, but it didn’t bother her at all. She just wanted me to tell her, and we moved on.

I’m hoping for a more cheerful day today.

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Losing Two “Old Friends”

Like other people with dementia, Kate’s memory is progressively worse all the time. At the time of her diagnosis, we were told that she would remember the things that were most important the longest. I’d say that’s the way it has worked out. This week I have seen the signs that two of her favorites are now dropping from her memory.

One of those is Willie Nelson. I think her fondness for him relates mostly to the fact that he’s a Texan. For years, her eyes have brightened at the mention of his name. Recently, that has been replaced by a question. “Who is he?” I don’t mean that he is completely forgotten. I expect there will be other times when she responds the way she used to; however, the fact that she hasn’t known a few times suggests that his name is gradually receding from her memory bank.

Willie hasn’t been nearly as important as something else in Kate’s life – Dr. Pepper. That’s a popular drink in Texas and with her family. Her cousin played an important role in the establishment of the Dr. Pepper Museum. She has a variety of Dr. Pepper memorabilia at our house. It has been her preferred drink for as long as I have known her. That is now changing.

She has always been particular about the mixture of seltzer to syrup when she gets a Dr. Pepper from a fountain like they have at many self-serve locations. She likes it to match what she gets in cans. Over the past year or so and especially the past few months, she hasn’t liked the Dr. Pepper she is served in restaurants. She has asked me to taste them, and I can’t tell any difference. Although I am not as sensitive as she is, I believe it is her taste that is changing and not the drinks themselves.

The big surprise, however, came last night when we went to dinner. As she got out of the car, she said, “What am I going to have to drink?” I don’t recall her ever asking that before, especially before we have entered the restaurant. I told her they probably had Dr. Pepper and, if not, she could have her half-sweet and half-unsweetened tea. She said, “What is Dr. Pepper?” I was shocked. That was the first time she has failed to recognize her favorite drink. When the server asked what she would like to drink, I looked at Kate and said, “Dr. Pepper?” She gave a frown. I told the server to bring her iced tea.

It may seem a bit trivial to others, but I look at this as yet another marker on this journey.

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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.

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Changes in the Wind

Over the past week I have been glad to report that we have had so many good moments. After a confusing start (the second day in a row), the string of good days continued through yesterday. Despite these good days, I am also noticing increasing signs of decline. Kate’s dependence on me is even greater now than before. She seems uneasy when I am not immediately in sight. Sometimes this happens in the house as it did last night after returning home from dinner. She went to the bathroom to brush her teeth while I went to another room. When she came out and didn’t see me, she called my name. (Yes, my name. Although she often can’t remember it. Often she is able to remember it when she needs me. If she can’t, she just says, “Hey.”) When I got to her she gave a sigh of relief and said, “I’m glad to see you.” This kind of experience happens more often outside the home. At Casa Bella the other night, I was walking ahead of her when she stopped to speak to someone. When she turned around, she didn’t see me. I heard her say, “Where’s my husband?” I turned around and walked toward her. She was very relieved when she saw me.

She doesn’t remember the layout of our house or the names of the different rooms, but she can find her way by trial and error. She prefers that I tell her or lead her where she wants to go. That is almost always the bathroom. When we return home after lunch, she often asks me where she should be, not just the room but the place to sit as well.

Another sign of her dependence is her comments on feeling safe with me. A few nights ago, I brought her nightgown to her and started to go to another room. She asked me to stay. She said, “I’ll feel better if you are with me.” We stood in the hallway while she undressed and put on her gown. Then we walked back to the bedroom. I don’t understand why she felt she needed me. My best guess is that she wanted to make sure she put her gown on the way it is supposed to go. She has had problem for quite a while getting into it so that it is not backwards. She is now confusing the sleeves with the opening for her head. I am usually with her when she does this. She must have felt uneasy because I was going to leave it in her hands. At any rate, she is feeling more insecure when left on her own.

This past Sunday as we walked from the car to the restaurant, she said, “I feel better when I am with you.” She was holding my hand and added, “I don’t know how to say it, but I feel “safe” with you.” She frequently uses the word “safe” when she talks about being with me.

She also asks to hold my hand more often than in the past. For a long time, she has only wanted to do that in especially challenging situations. She often says, “I didn’t have to have it, but it is nicer.” She is in an “in between” stage right now. Sometimes she wants my hand; other times she doesn’t. She almost always wants me to hold her hand when stepping off a curb and crossing the street. This is similar to other behavior when she sometimes wants help dressing but not others.

I’ve been reporting for some time that she has difficulty with her puzzles. In the past week or so it has become even harder for her. Part of that is her eye sight. She can’t easily spot the places she needs to touch in order to leave a puzzle she has just completed or to select a new puzzle.

Over the weekend, we had unfortunate problem with the iPad. It has been operating much slower in the past few weeks. It came to a virtual halt on Saturday because the storage was completely full. I deleted a number of apps. She really didn’t need them since the only one she uses is for her jigsaw puzzles. That didn’t solve the problem. I ended up deleting the puzzle app and reinstalling it. That solved the problem but created another.

She is now using a newer version which means that the size and location of the different buttons are different than the version she had been using. Not only that, but I’ve been unable to locate the old puzzles in her library. Kate hasn’t noticed that, but she is having more trouble going from the puzzle she has just finished to the next one. The size of the “buttons” she has to push are much smaller which adds additional problems.

I’ve taken pictures of each of the pages where she needs to tap the right button. I have enlarged them and put them on 8 1/2 x 11 paper. I included my finger in each picture to show her where to tap. I am going to use a colored marker to make arrows that also point to the right spot. I should have that finished today.

Altogether these things have caused her to ask for my help much more than in the past. I’ve been helping a long time, but the frequency with which she asks for help has increased geometrically. Each time she needs help, I get up from my chair and walk over to her. It now occurs so frequently that I have only been seated a few minutes before she is calling again. That is because she needs help after completing each puzzle. It is almost comical. I have spoken with both sitters to make sure they understand the problems she is having and help her while I am gone.

Let me close on a higher note. Last night was opera night at Casa Bella. She and I had a wonderful time. We had not heard either of the two singers, and they were outstanding as were the pieces they sang. Most of the arias were ones we had not heard, but they were great on a first listen. We ended the day happily once again.

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A Rocky Start with a Nice Finish

Yesterday morning I had two surprises. I was happy about the first one. Not so for the second. First, the good news. I saw on the video cam that Kate was up, and it was about 8:00. I always like it when she gets up without my having to wake her. That is especially true on a day that we have a sitter. That insures that I don’t have to rush her before the sitter arrives. It’s even better on Monday because the sitter comes at noon instead of 1:00.

When I got to the bedroom, she had just come out of the bathroom. She seemed alert and showed no signs of confusion. I asked if she was going to take a shower. She said she was. I knew that she would want to rest a while after her shower, but I also knew that we had plenty of time and still might be able to get to Panera for her muffin, something that is a rarity these days. As expected, she got her shower and went back to bed.

A few minutes after 10:00 I decided to get her up. That’s when I received the second surprise of the morning. She wasn’t asleep, but her eyes were closed. I asked if she would like me to take her to get a muffin. She gave me a strange look. She wasn’t the same alert Kate I had greeted earlier. She was clearly confused. When I said that I had her clothes out and would help her get dressed, she looked at me sternly and said, “Who are you?” I gave her my name and told her I was her husband. She was surprised. That is not unusual; however, she was obviously uncomfortable and pulled the covers up to her neck. I said, “You do recognize me, don’t you?” She didn’t and didn’t want me to help her dress. This was totally unlike any of our previous experiences. There wasn’t any way that I was going to explain this.

I didn’t push her. I told her I thought I could help her and got her “Big Sister” album. I showed her the photo of her and her brother on the cover. She didn’t show any sign of recognition until I pointed to her picture and said, “Who do you think this little girl is?” She hesitated and then said, “Me.” I turned to the first page and showed her a photo of her with her mother and daddy. Then I turned to a section that has a few of our wedding pictures. She didn’t remember anything.

I decided she just needed a little more time. I told her I wanted to take her to get a muffin. She asked about her clothes. I showed them to her and suggested she get dressed. By this time, she was beginning to feel more comfortable with me, but she still did not believe I was her husband. She did, however, let me help her dress.

When she was dressed, she noticed a wedding picture of our daughter, Jesse, on the dresser and said, “Who is she?” I explained that she was our daughter. She walked over to it and asked if she could take it with us. I told her she could. She asked where she could keep it. I told her this was our room and that she could keep it right there on the dresser if she liked. She still wanted to take it with her.

In the car on the way to Panera, I said, “You seem like you’re feeling less confused now.” She acknowledged that she was and said, “What’s your name?” I said, “Richard Lee Creighton.” Then she asked me her name. I said, “Katherine Franklin Creighton.” She frowned when she heard “Creighton.” I didn’t say anything.

When we got closer to Panera, she asked my name again. I told her and added that I was her husband. She wasn’t buying that. After we had been seated a while, she asked my name. I told her and said that I was her husband. She didn’t believe me. Again, I didn’t push.

We had been at Panera about forty minutes when I thought we needed to get home for the sitter. On the way I reached out my hand and touched her leg and said, “I love you.” She put her fingers to her lips and blew me a kiss and said, “I love you too.” I took that as a sign that she had finally recognized who I was.

The sitter arrived a few minutes after we were home, and Kate seemed perfectly normal. I said I was going to Rotary, and she said, “What are we going to do?” I told her that she and Cindy could go to lunch at either Applebee’s or Panera. She said, “Why don’t you go with us?” I explained that I needed to attend my meeting. She didn’t seem to mind that, but I was glad to see that she would have felt even better if I had stayed.

When I returned home, I was pleasantly surprised to see that Kate and Cindy were having a conversation in the family room. Kate seemed to be taking the lead. Cindy said they had gone to Applebee’s for lunch and come back to the house. She said Kate had not worked on her iPad at all and that they had been talking the whole time. That was another surprise and a welcome one. I was happy for two reasons. First, that she hadn’t had a nap. Second, because she was able to engage in conversation for such a long period of time and that she was doing a lot of the talking. I want Kate to develop a strong relationship with her. This was a dramatic contrast with her confusion this morning. I felt much better.

The rest of the day went very well. We spent about an hour and a half at Barnes & Noble and then went out for a Mexican meal at Chalupas. She spent the rest of the evening working on her iPad while I watched the news. Then I turned on a series of YouTube videos for her. Several times she needed help with her puzzles, but she seemed to get along well after that. When I told her it was bedtime, she was very cooperative. She slept through the night and is still sleeping as I finish this post at 7:30.

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“This is not my best day.”

Kate was up a little earlier yesterday. That gave us time to spend an hour at Panera before leaving for lunch at Andriana’s. Other than the time she got up, Kate seemed pretty much the way she usually is, perhaps a little less groggy. After we took our seats at Panera, I discovered something that established a pattern for the rest of the day. Here’s an excerpt of our conversation.

Kate:              “What’s my name?

Richard:        “Katherine Franklin Creighton.”

Kate:              (Looks puzzled) “Creighton? Where did I get that?”

Richard:        “From me.”

Kate:              “Are you my father?”

Richard:        “No.”

Kate:              “Who is my father?”

Richard:        “Charles Franklin.”

Kate:              “Charles Franklin. Who is he?”

Richard:        “He’s your father.”

Kate:              “Is he married?”

Richard:        “Yes. He married Virginia Franklin.”

Kate:              “Wait. Tell me that again.

Richard:        Your parents are Virginia and Charles Franklin.”

Kate:              “Do they have any children besides me?”

Richard:        “Yes. You have a brother.”

Kate:              “What’s his name?

Richard:        “Ken Franklin.”

Kate:              (Now on overload) “Stop. You’ll have to tell me again, but later.”

In some ways this conversation was no different than others we have all the time. What struck me about this one was that nothing I said appeared to spark the least sign of recognition. Normally, upon hearing her father’s name, she might say something like “He was a nice man.” In this conversation she was always searching for something that sounded familiar and not finding anything. She just kept asking questions until she couldn’t process any more.

From Panera we went directly to lunch at Andriana’s. She continued to have memory problems. The big surprise was the first time (of many) that she pointed to the mug shot of Frank Sinatra and asked me who he was. I fully expected her to say, “I don’t like him.” She has been saying that or some variation the past few years we have eaten there. This time she didn’t say anything. It was about the third time she asked that she said, “Is he a nice guy?” I tried to get around this by saying that he was very popular. She pushed a little harder, and I told her that his ex-wives and girl friends might not think so. She didn’t pick up on that. Subsequently, she just asked his name, and I told her without her expressing any evaluation. That is a big change from the past.

Before we got our food, she asked about her name and mine. That led to asking about our relationship. When I told her I was her husband, she was surprised. She couldn’t understand how that could be, but she did believe me. It was one of those times when she was glad to know we were married. Despite her confusion, we had a very nice lunch and conversation.

As soon as we got home, she wanted to take a nap. She rested about an hour. Then she came to the family room and started work on her iPad. It wasn’t long before she saw the “Big Sister” album on the coffee table. She picked it up and started to go through it. I was seated across from her with my laptop. She spent about twenty minutes before asking if I could help her. I took a seat beside her on the sofa. She asked me to tell her all the names of the people in the photos. She didn’t mean on a single page or several pages. She meant all the people in all the photos in the book. Most of them are of her, her brother, her mother and father, and occasionally other extended family members. She never appeared to recognize them from one photo to another. Each time I said, “This is your Daddy” she said, “What’s his name?” The same was true for her mother. Frequently, one photo was beside the other. I still needed to tell her their names. We hadn’t gone through more than four or five pages before her brain was on overload. That’s when she said, “I think we should stop. This is not my best day.” Once again, I was struck by how well she understood that she was not having a good day. I should add that she didn’t display any sense of frustration, confusion, or anxiety. She simply recognized her brain was not working as well as it should. She was right.

I suggested we leave for dinner. She said, “Maybe that would help.” She sometimes says the same thing before taking a nap. On the way to the restaurant, she asked, “Are we in Texas?” I told her we were in Tennessee. She said, “Where is TCU?” I said, “In Texas.” She said, “I know that, but where is it around here?” She hadn’t remembered I had just told her we were in Tennessee.

We had a nice time at dinner. We didn’t talk a lot, but we did converse off and on throughout the meal. She had salmon and talked about how good it was. When she had almost finished, she said she was getting full and wanted to know if I wanted the rest. I took a small piece, and she said, “It’s all right but not really that good.” This change in evaluations is not unusual. This happens frequently and makes it difficult to know if she really likes or dislikes things.

When we stood up to leave the restaurant, she said, “I want you to know I’ve enjoyed being with you. You’re a nice guy.” It sounded like I was her boyfriend, and she was about to dump me. I said, “Thank you, I enjoy being with you too.” In the car I mentioned something about our son and his family’s being in town next weekend. She said, “What do you mean our son?” I explained that we are married. She gave one of her most common responses, “How did that happen?” I told her and said, “Are you unhappy about that?” She said, “No, I’m glad. You’re a nice guy.”

Back at the house she picked up her iPad and worked puzzles for the balance of the evening. That is not to say it was easy. She ran into problems working puzzles all day. At one point last night, she closed the iPad and put it down. I could tell she was a bit frustrated and asked if she would like to look at one of her photo albums. She said she would. I brought her the “Big Sister” Album. She expressed only mild interest in the cover photo that she loves so much. In a few minutes, she said, “What do I do now?” She had never opened the album. I went over to her and opened to the first page of photos. She didn’t express much interest. I couldn’t believe it. I told her who the people were, but that didn’t make any difference in her response. She said, “What do I do now?” I told her she should just look at the pictures. I started to step away when I noticed that she was pressing a photo. She was treating the album as though it was her iPad with jigsaw puzzles. She thought when she pressed a photo, it would scatter the pieces so that she could put them back together. She was confused when nothing happened. I told her they weren’t puzzles but pictures. She was disappointed and said, “Then what do I do with it (the album)?” I told her she could just look at the pictures and enjoy seeing her and her family. She must have had it so deeply imprinted on her mind that it was an iPad with puzzles that she couldn’t relate to it as a photo album. I said, “It sounds like you would rather work puzzles now.” She nodded. I picked up her iPad and gave it to her.

While she was working on her iPad, I played a variety of YouTube videos starting with Tony Bennett and Diana Krall. She expressed only modest interest until I pulled up a Julie Andrews concert. She enjoyed that so much that she put her iPad down and watched. That led automatically to a portion of a BBC PROMS concert from 2010. It featured the music of Rogers and Hammerstein. She was fully engaged. Once again, music made a difference.

She was so engaged that she didn’t want to go to bed. She finally did and slept until 1:45 this morning. She sat up in bed. I asked if she wanted to go to the bathroom. She said yes and asked, “Should I go to my bathroom?” and pointed to our bathroom. She seemed rather alert and got up on her own and walked to the bathroom. I was afraid I might go back to sleep before she returned to bed, so I got up. After using the toilet, she spent about ten minutes brushing her teeth and cleaning her face.

I walked her back to the bedroom. As she was getting into bed, she said, “Well, we did it. <pause> Once again.” I didn’t ask what she was talking about. I just agreed that we had done it again. Once we were in bed, she laughed and said, “If we told our friends about this, they wouldn’t believe it. <pause> I almost don’t believe it myself.” She repeated this several times before we went to sleep. She is still sleeping. I wish I knew what she was talking about.

Given all these things, how do I assess the day? Clearly her memory was worse than any other day I can recall. In that respect, it was a bad day. To make matters worse, I know that this is part of a transition to even greater memory loss. I don’t like that. For the most part, Kate’s decline has been very gradual. The most striking changes have been since last spring. I know from others that people with dementia sometimes have sudden changes. Should I expect to see more of this in the next few days? Weeks?

On the other hand, she was happy all day except for a little frustration with her puzzles last night. We had a good time together. For that reason, I think of it as a good day. I really mean that. It reminds me of a professional and Facebook friend whose child has Down’s Syndrome. I know she is troubled by her daughter’s diagnosis and wishes she weren’t disabled in this way; however, she relates to her daughter as she would do with a normal child and enjoys her immensely. It’s much the same with Kate and me. Having Alzheimer’s is the worst thing that has ever happened in either of our lives. I find it especially difficult to watch her lose more and more of her abilities, but I try to look on the positive side (what she can do and what we can do together) and be grateful for those special moments we experience together.