A Schedule Gone Awry

If you read my previous post, you may remember that Kate rested for about two hours yesterday afternoon. That was after sleeping until 10:30 yesterday morning. Even though she had never had a problem before, I began to worry that she wouldn’t be able to go to sleep last night. We got to bed a little later. Kate was in bed at 10:00. I followed her at 10:35. Sometime after midnight, I heard her turn over and realized she was awake. I’m not sure that she had been asleep at all, but she was very wide awake and talkative. That led to a long conversation during which we both reminisced about our relationship, our children, her parents, our travels. These are all things that we talk about regularly. I don’t think there was a thing that was new including our agreement that we have been a very lucky couple.

Interlaced with the discussion were some of the usual questions about names. Early in the conversation, she mentioned how proud she was of our children. A little later, she asked if we have children. Then she wanted to know all about them. As she often does, she asked me to tell her where we first met.

Knowing that I was likely to be up early, I didn’t play as big a role in the conversation as I might normally do. I felt the need to get to sleep. Finally, at 2:35, I said something about going to sleep. She took the not-so-subtle hint and said she thought she would go to sleep as well. That’s the last thing I remember.

During our conversation, I had decided I would sleep late this morning. Habit got me. I was up at 5:35. I dressed for my walk, ate breakfast, and was out the door a few minutes after 6:30. I walked just over 4 miles and returned home at 8:00. To my surprise, I saw that Kate had gotten up. There are only a few times that she has gotten up that early in the past couple of years, and that was after a good night’s sleep. I was sure that she would sleep until I woke her for lunch. As it turned out, she was ready for Panera before 9:30. That is where we are right now.

The lack of sleep may be having an effect on her. She just asked, “What is your nome?” She knew that wasn’t right and repeated it. She still couldn’t say “name.” I gave her my name. Then she asked her name. Moments later she asked my name again. I just gave her my first name, but she wanted the whole thing. Then she said, “What’s my name again?” She asked where we lived. When I told her, she tried to say “Knoxville.” As she did with “name” earlier, she pronounced it in a funny way. All of this is not dramatically different from what goes on every day, but the look on her face and the way she is speaking makes me think she is more confused than usual.

Today is my Rotary day. That means the sitter comes at noon instead of 1:00. I like for Kate to get her lunch around 11:00 so that we can easily get back home in time to meet Anita. I have frequently had to call her and tell her to meet us here, but that won’t happen today. I suspect Kate is going to be tired. I’ll get her a sandwich in another twenty minutes. Then we’ll go back home. My guess is that she will take a nap.

After Rotary, I will go to the Y. That will keep me awake. I hope we will get our sleeping back to normal tonight.

Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.

Who am I? (I’ve watched Les Miserables so many times over the past several weeks that I want to answer Jean Valjean.)

We’ve been at Panera for thirty minutes. Kate is working jigsaw puzzles. I’ve been checking and responding to email. A minute ago, we had the following conversation.

KATE: “Who are you?”

RICHARD: “I’m your husband.”

KATE: “But what is your name?”

RICHARD: (Knowing she wants my full name.) “Do you want my first name?”

Kate gives me a dirty look.

RICHARD: “My name is Richard.”

KATE: “What else?”

RICHARD: “Creighton.”

KATE: “Oh, I knew that; I just forgot. What is my name?”

RICHARD: “Maybe I should ask you that?”

Kate gives me another dirty look.

RICHARD: “Kate Creighton.”

KATE: “That’s right.”

We play this game frequently. I am reasonably sure that sometimes she doesn’t remember her own name. (I know she doesn’t always remember mine.) I am never sure at the particular time if she is just playing the game with me and really knows her name or if she really doesn’t (at that moment). This was one of those times when I’m not sure.

I hope the tone of this exchange comes through the way I intended it. There is a serious undertone because she really does forget my name. On the other hand, the way she enters into this “game” seems very light-hearted and innocent. It is very much the way a small child might play a pretend game. I often wonder if she feels this is a safer way for her to find out my name than to ask me in a more serious fashion. I guess that is one of those things for which I’ll never have an answer.

Bedtime Conversation

Kate got into bed to work a few more puzzles before going to sleep.

KATE: “I like it here.”

RICHARD: “I do too.”

Five Minutes Later

KATE: “What’s the name of this hotel?”

RICHARD: “This is our house.”

KATE: “You could have fooled me.”

Another Five Minutes Later

KATE: “I just like your being here even if we aren’t talking.”

RICHARD: “Me, too. It would be lonely without you.”

KATE: “Do you know my name?”

RICHARD: “Yes. Do you?”

KATE: “Kate. What is your name?”

RICHARD: “Richard.”

KATE: “Oh, I knew that. I just couldn’t think of it.”

A Quiet but Nice Day

Kate slept a little later this morning, so we didn’t get to Panera until just after 11:00. Then Andriana’s turned out to be busier than usual. That meant it took a little longer for lunch which actually worked in our favor. This has been one of those days when Kate has asked more questions about our family (her father’s name, my father’s name, our children, and where we live). I took advantage of that time to reminisce with her. I was partially motivated by her anxiety attack week before last. That night she didn’t know who she who or where she was. Since then I have been trying to give her a little more information about her and her family.

Today’s conversation dealt largely with our attendance at so many live performances since our first date to Handel’s Messiah. I reminded her that we began our 50th anniversary celebration with a trip to New York City during the Christmas season where we attended Messiah at St. Thomas Episcopal Church.

Then I gave her a Cliff Notes’ summary of other performances we have enjoyed since we married. Most have involved musical theater. The first Broadway and Off-Broadway musicals we attended were on our first trip together to New York in 1967. We saw the original productions of Man of La Mancha and Cabaret. Since then we have seen as many as 30-40 shows there and many more here in Knoxville. We have also had season tickets to the Knoxville Symphony for 30 years. We haven’t generally attended some of the more popular entertainers, but we have been to concerts by Louis Armstrong, The Mamas and the Papas, Gloria Loring, Eartha Kitt, Jimmy Buffet, Marvin Hamlisch, Bette Midler, Billy Joel and Elton John, Tony Bennett, Paul McCartney, Art Garfunkel, and Willie Nelson. Opera has more recently entered our lives but is a favorite. We’ve enjoyed opera at The Met in NYC, Vienna, Berlin, Amsterdam, Zurich, and Sydney as well as quite a number of the Live in HD at The Met performances broadcast live in local theaters.

I went through these things knowing that she wouldn’t remember many, if any, of the things we had done. She does, however, remember that we have attended lots of events like these. More importantly, she was very attentive and seemed to enjoy my them bringing up. At the end of our reminiscing, she noted how fortunate we have been to have had so many good times together. I agree and will cherish the memories when we are no longer able to share them.

Changes in Conversation

I’ve heard other caregivers express sorrow over the changes in everyday conversation with their spouses. I’ve had the same experience with Kate. During the first two years after her diagnosis, our conversation was pretty much the same as it had always been. Gradually, we talked less and less. I think two things accounted for the change. First, I’ve always been a bigger talker than Kate. My parents were incessant talkers. I think my brother and I were heavily influenced by them. Kate has always been able to handle everyday social situations with ease, but she doesn’t have the same drive to talk that my brother and I have. When Alzheimer’s entered her life, she became quieter. We would go long stretches with silence, something that is a bit of a problem for me. I also found that when I would tell her something I was excited about, she didn’t respond in the way she would have previously. Our conversations became one-sided. Even talkers need a little encouragement to keep talking. She just didn’t provide it.

The second thing that accounts for this change is that a lot of conversation relies on memory. In almost any conversation, we refer to things that happened or that we talked about previously. As Kate’s memory declined, she lost the information she needed to carry on a conversation. Each time I would start a conversation, she would be puzzled because she couldn’t remember what I was referring to.

As a result, we talked very little. I felt especially uneasy when we were in restaurants. She wasn’t bothered at all. She could go through a whole meal without saying anything. Frequently, she would close her eyes as though she was going to sleep. Sometimes I wondered if people thought we were having some kind of marital problem. Over time, I learned to accept this, but I still missed our conversations.

Looking back, I believe I was slower to live in her world than I should have been. When she talked, her conversation related to her family. She has a deep love and admiration for her mother. Her long-term memory was still pretty good. What I have only grasped more recently is that feelings last much longer than specific facts. Gradually, we have both evolved into conversations that involve our feelings about both of our families and about our lives in general. We reflect on our friends, the places we have lived, the things we have done, our travel, and other highlights of our marriage.

This change in focus has had a significant impact on our conversation. It is still quite different than before Alzheimer’s, but it is enjoyable for both of us. It depends on my initiating the conversation. I bring up as many different things about our marriage and our families as I can remember. That provides a wealth of topics. The good news is that we can keep repeating them, and they are always new to her. I try to keep the focus on our feelings for the events of our lives rather than simply the facts. The facts provide a way to bring back the feelings. I admit it doesn’t always work the way I had intended. For example, last night I brought up her visit to the Jeu de Paume in Paris with our daughter in 1973. I told her they saw somebody special. Kate’s eyes lit up. It turned out that she didn’t remember the experience itself or that it was Julie Andrews and her daughter they had seen. On the other hand, she enjoyed the story I told her. That is true for almost all of the things I bring up. It’s not a loss, however. She experiences them in the moment I tell her. It’s the way children enjoy the stories their parents tell them. This is working for both of us.

Noticing Lots of Things

Since starting this journal in 2011, I have not kept a regular schedule for my entries. I write when something catches my attention. As I have looked back to the early years, I notice that I didn’t write nearly as often. I think that’s because Kate wasn’t experiencing as many changes. Our lives weren’t significantly different than they were before the diagnosis. Now there are so many things occurring that I find it impossible for me to remember them all.

That has been particularly true over the past few months. While I don’t know what life will be like in the next six to twelve months, I do have a distinct impression that Kate is going through a transition period. The most prominent sign of that is her forgetting close family and friends. It also includes a failure to recognize where she is. A year ago, she had difficulty remembering where we were when we traveled to another city like Asheville or Fort Worth. Now she doesn’t remember where she is when we are right here in Knoxville. As we drove to Chalupas for dinner last night, she asked, “Does this city have a name?” When I told her, she said, “I know that. It just slipped my mind.” Unlike the early days, she didn’t sound very frustrated that she hadn’t remembered.

As we left the restaurant, she asked, “Where are we right now.” I told her again that we were in Knoxville. Then I mentioned that we had lived here 47 years and that was much longer than we had lived any other place. She said, “What’s the name again?” Once more I told her. She repeated the name several times. About a mile down the road, she asked me to tell her again.

It’s not just people and places she is having trouble with. On the way to lunch yesterday, I commented on the seeing the first blossoms of Lady Banks roses. She said, “You’re going to have to tell me the names of all of the flowers later when I am more awake.” I felt a touch of sadness hearing her say this. She has always loved these roses and the other flowering trees and plants are be beginning to come out. What a shame to see her lose these memories.

Although I said she doesn’t seem to express a high degree of frustration when these things happen, she often says things like, “I know you get tired of my asking you.” That let’s me know that she recognizes that she keeps asking the same questions. I keep giving her the same answer, “That’s what I am here for. I want you to ask as often as you want to. Remember I am your ‘MM.’” That is the nickname she gave to me some time ago. It stands for “My Memory.”

One of the other changes that I have noticed is that she is more sentimental than she used to be. In the last few weeks, I have seen her with tears in her eyes several times. This is a rather dramatic change from the past. She has never been one to cry. Since her diagnosis, two different types of situations have brought her to tears. At first, it was the panic attacks she had when I was trying to get her to hurry to get someplace. I quickly adapted by trying to avoid any time deadlines, when possible. On several occasions, when we might have to rush to get to a concert, I would simply choose not to attend. For quite a while, I have tried not to schedule anything in the morning. Now I have become more rigid. I don’t schedule anything before noon. I even changed the office we go to for her doctor’s appointments. Now we go to one on the other side of town so that she could have afternoon appointments.

Her recent tears have occurred when thinking of good things that have touched her. One of those is music. The other is her family. As her memory of other things began to fade, she talked a lot about her family. That was particularly common when we were with friends. I think that was because her memory made it difficult to remember everyday things like events in the news or other things that were happening with our friends. That interest in family continues but with a different twist. Now she talks with me about her parents and their families as well as our own immediate family.

Yesterday afternoon I mentioned something about a cousin of hers who recently passed away. That prompted her to reflect on her mother and father and then her aunts and uncles. Her father was one of eight children, so she had plenty of aunts and uncles. Six of them lived in Fort Worth where Kate grew up. Another lived a short distance away in Dallas. Only one lived out of state. That meant she had many childhood experiences with her larger family. As she talked, she got more sentimental. She kept saying, “That’s all I’m going to say.” A second later she would continue. Mostly she said the same things again. As she did, I could see the tears welling up in her eyes.

She seems to be working hard to hold on to what remains of her memory and her ability to handle life. One example is her asking me to tell her the names of people and friends. I can also tell that in moments when she has been quiet, she has been thinking of someone’s name. For example, yesterday in the car, she said, “Ken Franklin.” That is her brother. One other time she said her mother’s name. I asked if she had been trying to think of the name. She said, “I knew the name. It just wouldn’t come to me.”

She has always been careful to make up the bed every morning. She once told me that her mother had emphasized that was something she should always do right away. Two or three years ago, she stopped. Recently, she has started again. She doesn’t do it perfectly. The important thing is that she does it. I see it as another effort to take control of some aspects of her life.

She has become so open about not remembering names that I did something I have avoided doing until today. Without her asking, I asked her if she knew what city we were in. She said very calmly without conveying any sense of being troubled, “No.” I told her once again, “We live in Knoxville.”

Special Moments

For most of the progression of Kate’s Alzheimer’s, she has been less talkative than she used to be. That has meant a significant change in our conversations. We often spend most of our time together in silence whether at home, during meals, or in the car. That has required an adjustment on my part since I am more of a talker. My parents talked constantly. I recall times when they had talked while my dad was getting ready to leave for work. and then again as soon as he reached the shop.

Kate’s and my conversations were never like those of my parents, but I would say they were probably similar to that of most couples. Talking requires too much of Kate. It is not uncommon for her to ask me tell her tomorrow what I was about to say right then. That ends the conversation.

Once in a while, however, she does want to talk. When she does, I welcome and encourage it. The subject matter is usually the same. She talks about her family and us as a couple. That was the case while we were at lunch today. I said something about the pictures I had taken over the weekend in Texas and mentioned her cousin Chester. When I did, she said something that let me know that she didn’t remember his passing away last week and attending his memorial service just two days ago. I often just let things like this pass, but I told her that Chester had died and that we had just returned from Texas. Then she said something about remembering being in Texas.

From that prompt, she said, “I’m really glad you got to know my family.” I told her I was glad too and that it had given me an appreciation for large, close-knit families. She continued the conversation talking about her father. She always speaks fondly of him, but she talks more about her mother. Then she talked about us. She mentioned how well things have always gone for us. I concurred. We both talked about Kate’s father having married a girl from out of state and her doing the same. We talked about the places we had lived and the excitement of each stage of our lives. Naturally, that included having children.

It was a very slow and tender conversation. I wasn’t just listening but participating. It is one of those special times that come along periodically. They always remind me that some of the best times we ever have are those that occur spontaneously and involve simple pleasures like today’s very ordinary lunch. She won’t remember it, but I will.

Conversations

If you are caregiver for someone with dementia, you may relate to an experience Kate and I had last night. From the time of her diagnosis, we have spoken very little about her Alzheimer’s. Most of that came in the first year. Since that time most of what has been said is Kate’s saying that she thinks she is getting along pretty well and my agreeing.

In addition, conversation itself has been different. In the early years, we took time for conversation over many other things. We started regularly sitting down and talking on the patio or in our family room over a glass of wine. The conversations themselves often gravitated to the many memories of our lives together. Somewhere along the way we talked specifically about how fortunate we have been.

Over time, Kate’s memory has waned. That makes conversation for her more difficult. Most of our time together is spent in silence. I have to say this has been something of a challenge for me. I grew up with a mother and father who talked continuously. I am a big talker myself. It actually feels awkward for me to sit across the table from her at a restaurant in silence. Kate is gifted when it comes to ordinary social conversation but is not as driven to talk as I am. During our marriage, I have learned to appreciate her need for private time. Thus, I haven’t been surprised that with her Alzheimer’s, she often tells me not to talk or to “tell me about it tomorrow.” That is my intro to last night.

After we returned home from dinner, Kate dressed for bed and worked puzzles on her iPad. I turned on the TV to one of the football games. About an hour later, Kate said she was going to call it a night. She closed her iPad and went to the bathroom. In a few minutes, I heard her saying, “Oh . . . oh . . . oh . . .” I have never understood this, but it is something she says periodically. When I ask, as I did again last night, she says that nothing is wrong.

As she left the bathroom, she stopped in front of me and told me she loved me and how much she appreciated everything I do for her. Then she got into bed. As she lay there, I could hear her whimpering. I went to her and sat by her on the edge of the bed. I asked her if she were sure she was all right. Again, she said she was fine. I left her a moment and went to the bathroom where I noticed that she had hung her underwear on a towel to dry. I assumed she had had an accident. I went back to her and tried to comfort her. She couldn’t tell me anything except to say she had been reminiscing. I turned off the TV, turned out the lights, and got into bed with her. For the next 30-45 minutes, we talked about our lives together, our honeymoon, the places we had lived, our children and grandchildren, and our travels. It was a very special moment. I hadn’t heard her talk that much in a very long time. As we talked, she calmed down, and we fell asleep.

I’ll never be sure how to explain what happened to bring this on. I suspect, however, it is one of those times when she realizes how much she is declining and losing control. My own feelings were very mixed. I loved being able to have such an easy flowing conversation with her. On the other hand, I can’t help feeling sad to think of her recognition of her current state.

Today should be another bright spot in our Christmas season. We are driving to Asheville where we are going to see the musical Annie. We’ll have a couple of nice meals and enjoy another stay at the Haywood Park Hotel.

Talking About Her Mother

We are sitting here in the family room doing our separate things. She is working on her iPad. I am working on photos from Chautauqua before creating a slide show of our recent stay there. She just mentioned that we had done so many good things in our marriage. Then she said, “I know I’ve said this before, but I’m so glad we did what we did for my mother.” (She is referring to our bringing her mother to live with us in our home where she had 24/7 care for almost five and a half years.) This is a recurring theme I have heard for a long time. She also frequently says what a special person her mother was and how much she did for other people. There have also been times when she has imagined that someone has said something bad about her mother. In one instance, she said she was glad that I had stood up for her mother when some boys were saying things about her.

Her mother really was a special person. I think it is now that she is fully recognizing that.