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A Very Early and Unusual Start Yesterday

It seems like almost every day brings something new. It happened again yesterday morning. I got up to go the bathroom just before 4:30. When I got back into bed, Kate pointed toward the bathroom and said, “Is he still there?” I said, “No, he’s gone.” Then she started to get up. I thought she wanted to go to the bathroom. I asked if that was where she was going. She said, “No.” One of the interesting things was that she appeared to be wide awake. She showed no signs of grogginess the way she usually does when she wakes up. In this case, I don’t think she was really awake. I think she was sleep walking and talking in her sleep. The way she talked just didn’t sound the way she would normally talk. It was more like she and I had been in a conversation, and she was continuing it. I suppose it was more hallucination than anything else. Maybe she was having a dream.

Then she began to look for a light. She finally found the lamp on the table beside my bed and turned it on. I didn’t understand everything she was saying, but it seemed clear that she was planning to get up for the day. I told her it was 4:30 in the morning and that we ought to go back to sleep for a while. She turned off the light and went to the bathroom where she said she was going to brush her teeth. She took longer than I thought was necessary, and I got up to check on her. She had squeezed toothpaste into a plastic cup that she keeps on the counter and filled it with water. Then she started turning the mix with her tooth brush. I helped her get toothpaste on her brush and suggested we get to bed. Then she asked if someone was going to clean up the mess she had made. I told her to leave it and someone would take care of it. When she got up later, she seemed fine.

At lunch, I said something about our having lived in Raleigh after finishing graduate school at the University of Wisconsin. She asked, “What were we doing in Raleigh.” I told her that I was on the faculty at NC State. She said, “What did you teach?” It was telling that nothing rang a bell as I told her about our time there.

She was also a little confused at dinner. We ate at our regular Friday night pizza place. As we walked in, she said she liked their “Christmas lights.” There were no Christmas lights. In fact, I didn’t see anything that looked like lighting that she would have confused as Christmas lights. Fortunately, she didn’t turn that into a conversation. I don’t think I could have carried that off for very long. It wasn’t long before she said, “I think I’m going to miss this place.” I took that to mean Knoxville. It’s been a while since she has said much about our moving to Texas, but she has said several things lately that convey that is still on her mind.

When we got back home, she responded to our house as though it is not the house in which we are currently living. She wanted to brush her teeth and asked me where the bathroom is. I showed her. A little later, she specifically asked me who lived here. I told her it was our house and that we had lived here for 21 years. She found that puzzling. She didn’t remember it at all.

She was also very tired and got into bed a few minutes after 8:00. I hope that means she will get up early today. I’d rather not have to rush her. We are going to Nashville to visit her friend Ellen.

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A Conversation at Dinner Last Night

As Kate continues her recent decline, she is more cognizant of her deficits than I might have thought. I believe this is one reason she is expressing more attachment to me. She knows she needs and depends on me. At the same time, I am becoming more sensitive to the fact that I am slowly (and now not so slowly) losing her. Each of our responses to her changes were captured in a brief moment at dinner last night.

She had asked my name and where we were. Then she said, “I’m going to try to do better (remembering).” I said, “As we age, it’s just harder to remember things.” She looked at me and said very calmly, but seriously, “You know it’s more than that.” A moment later, she said, “I’m just glad I have you.” I said, “You know I will always be with you.” Then I added, “Till death do us part.” Then we both acknowledged our inability stop that ultimate separation.

I don’t know that she remembered that she has Alzheimer’s and didn’t pursue it. Her comment does reflect an awareness that her memory problem is not just a matter of getting old. It reminds me of how she felt as far back as 2006 when she believed she had Alzheimer’s. She knew then and she knows now that her problem is serious. It’s not something that everyone experiences.

My response to her also reflects my deeper feelings about losing her. I don’t want to let her go, but that is something I can’t control. I do want her to be secure in knowing that I really will be here for her “till death do us part.”

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From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

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She Knows Me. She Loves Me. But She’s Not Sure of My Name.

After the sitter left yesterday, I walked over to Kate and sat down on the ottoman in front of her chair. Here is a portion of our conversation.

RICHARD:    I’m glad to see you. I like being with you.

KATE:            I like being with you.

RICHARD:    I love you.

KATE:            I love you too.

She leaned over and kissed me.

KATE:            What’s your name?

RICHARD:    Richard Lee Creighton

KATE:            What’s my name?

This conversation is something else I never expected when we learned of Kate’s diagnosis. Had I known at the time, I would have been sad just thinking about it. Now I am living with it every day, but I find that I am not sad. How could that be? I’m not entirely sure. I think that is largely because her changes have been so gradual. That has given me time to adapt to each change. That doesn’t mean I meet each change without any sadness. The first few times I see signs of change, I do feel sad. So far that has been followed by the discovery that we still are able to enjoy ourselves. I know that will not always be the case. From the beginning we both understood how this is likely to end. I don’t mean specifically of course, but we know from experience how it usually unfolds. I am especially mindful of that right now as she slowly drifts away. I find myself experiencing a strange mixture of sadness and joy. Fortunately, our good times still outweigh the sad ones. We will hold on to these as long as we can.

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Very Chatty in the Afternoon

Yesterday afternoon, Kate took a nap and slept almost two hours. I think she was catching up for lost sleep over the past few days. She was definitely wide awake when she got up. We decided to go to Panera. In the car she said something about being very independent. We didn’t get very far before she recanted and said, “Well, you do drive me places, and shop for groceries, and take me out to eat, and take me to far away places.” When she finished her list, she said, “And, I don’t even know your name.” I told her. Then she said, “I knew that. It just wouldn’t come to me.” I said, “That happens sometimes.” I was interested that this occurred without her showing any signs of concern, anxiety, or fear.

When we got out of the car, she asked, “Did you know my mother?” I told her I did. Then she said, “What is her name?” I told her her, and she said, “You got it.” Once inside, I opened my iPad to write another post about a conversation we had had at lunch. Before I wrote anything, she asked me how many children her father’s parents had. When I told her, she wanted to know who they were. I went down the list of the 8 children who had lived. The first died in infancy. She began to reflect on all her aunts and uncles. That began a conversation (with her doing most of the talking) that continued for almost fifty minutes. It was interesting because she really couldn’t remember any specific facts, but she could remember qualities about them, at least how she remembered them. My only part in the conversation was answering her questions and agreeing with her memories.

In the course of our conversation she periodically said, “That goes in the book.” This is a photo book that she started to work on 5-7 years ago. For a couple of years, she edited photos on her computer, but she never got around to assembling them into a book. About three years ago, she stopped using the computer. She never said, but I think it just got too difficult for her. Her intention to create the book never ceased and continues to this day.

This time she talked more earnestly about the book. She noted that she had said she was going to write the book before. Then she said, “This time I’m going to do it.” She paused a moment and added, “And you’re going to help me do it.” I know it will never happen, but I believe it is good for her to have something for which she can aspire.

We finished the day with an evening of jazz at Casa Bella. It was an especially good evening. The vocalist is a member of our church, and we saw several other church members there. Kate didn’t participate much in the conversation at our table, but she enjoyed the music.

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A Conversation at Panera

Kate’s being up so early this morning meant that that we also got to Panera early. I think this was the fourth day in a row that she was in a particularly good mood. She clearly recognized where we were as we drove up to the restaurant. When I gave her my hand to help her up the curb to the sidewalk, she didn’t want it. Then she quickly changed her mind, saying, “I didn’t really need it, but it helps.”

As usual, I got her situated at our table and went to the counter to order our drinks and her muffin. When I returned with the muffin, she noticed that I didn’t have anything at my place and wondered why. I explained that I had already eaten an omelet at home. She teased me a little saying, “You just had to have something healthy, didn’t you?” What was striking about this is that, except for lunch, I have only gotten something to eat two or three times in all the years we have been going there. This was the first time she has said anything.

For thirty minutes or so, she worked on her iPad while I worked on my earlier post. Then, I think I said something about her mother. I know that she asked her mother’s name. I told her. Kate said, “She was quite a woman.” and I said, “Your mother would be proud of you. Then she said, “Do you think so?” I said, “I know so.”

I proceeded to tell her one of the things that I knew her mother admired about her, the 19 years she served as the volunteer librarian at our church. As I have done a couple of other times recently, I told her about her work a little like telling a story. She was surprised to know she had served so long. I explained that she had the perfect combination of training, personal experience, and personality for the position and that no one filling that position had had each of those qualities. I told her how well-acquainted she became with the parents and children as well as the teachers and other church members. I also told her about the many people she had helped to find materials for some special purpose. My mention of specific things she had done, jogged her memory a bit. That led to her adding other things she remembered from those 19 years. It was a beautiful conversation, and I loved seeing how good she felt about the contribution she had made. The library really had become a vital place under her direction, and her mother really would have been proud.

Our conversation caused me to reflect a moment. Could memory loss affect my self-esteem? I always try to imagine what it must be like not to have a memory. I do know that Kate has said a few things over the past year that suggest many other people have something about which they can be proud and that she doesn’t. It is easy for me to imagine that if I had forgotten everything about myself, I wouldn’t be able to think of anything that makes me special. I might feel somewhat inferior to other people. This is an aspect of the disease I hadn’t thought about before. Kate hasn’t forgotten everything about herself, but she remembers less and less all the time. I try to bolster her ego in every way I can, but I plan to be more sensitive to this issue in the future. I want her to remember what makes her special.

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A Surreal Conversation

Kate and I just returned from dinner where we had the most (only) surreal conversation of our 55-year marriage. On a number of occasions, I have said that I wished I could remember the exact details of our conversations. That was never truer than right now. It began as we were backing out of our garage. She commented on “this whole area” where we live. I asked if she meant the house or the neighborhood. She said everything. Then she added, “I would like to live here if we move back.” Those last two words were the clincher for me. I knew that she thought we were in her home town of Fort Worth. I didn’t correct her. As we drove down the street, she commented on the trees and specific houses that she liked. Then she asked if she had “lived here before.” I started to tell her she lived here now. Instead, I said, “Yes.” She said, “On the way home, I want you to show me which house.” Before we arrived at the restaurant, she asked where we were. This time I told her Knoxville, Tennessee. She repeated “Tennessee” and said she liked it.

Once we were seated at the restaurant and placed our order, she said something else that made me believe that we were in Fort Worth. There was a pause in our conversation. Then she said, “Who is my mother?” After I told her, we began a conversation much like one I described earlier this week. She said, “Tell me about her. What was she like?” I shifted into my storyteller role and told her about her mother’s being from Michigan and that her father and mother had met there one summer when he had traveled there with his mother. I talked about her mother’s family and her parents’ courtship that led to their marriage and making their home in Fort Worth. My story was punctuated by her expressions of surprise at everything I said. That was very unusual. Typically, when I tell her things like this, she displays some sense of recognition. The only part of the story that struck a chord was when I talked about how well-liked and respected her mother was. I mentioned that her mother had come to Fort Worth as a stranger but was welcomed into the family, and she loved them back.

Then she redirected the conversation. First she said, “And they (her family) welcomed you into the family too.” Then she shifted gears again saying, “I want to thank you for being so understanding. You never rush me.” I do think I am pretty understanding. I also know that I try not to rush her. On the other hand, I know that she feels I rush her more than occasionally. I recognize, however, that when we are not in one of those “rushing” moments, she is very generous with her compliments. This was one of those times. I would like to say that my modesty prevents my telling you other things she said, but, alas, it’s my memory that’s the culprit. I do recall that immediately after saying such good things about me, she said, “What’s your name?”

From there, she found herself struggling for the right words. She asked the name of the university located here. I thought she might be thinking of TCU, but I told her the truth and said, “the University of Tennessee.” It turned out that I was right, but she accepted my answer without question. There were moments when she was slipping back and forth between thinking we were in Texas and then Tennessee. For me, it was like being in someone else’s dream. She moved so seamlessly from reality to imagination. It was surreal, and it lasted so long.

Later, as we turned into our drive, I asked if she recognized our house. She didn’t. This was the only time that I have been aware that she failed to recognize and say something about how much she liked it. There have been times when she thought it was a former house or a house in Fort Worth, but she has always recognized it before.

After our conversation, I might have expected her to want my help in directing her where to go when we got inside. This time, however, she walked straight to the bathroom to brush her teeth. After that, she didn’t say or do anything that suggested any confusion. She seemed perfectly normal.

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A Very Tender Moment for Both of Us

People who know each other well often find that they understand the thoughts and feelings of the other without the expression of words at all. Last night, Kate and I had what I believe is one of those experiences. We went to our regular pizza place for dinner. We normally go on Friday night, but we went to a more special place that night. It is a much more romantic place than where we have our pizza. The pizza place is something of a dive, a really down home place where they specialize in all the Italian comfort foods – lasagna, spaghetti and meatballs, baked zita, etc. There is nothing romantic about it, but that is where we had a very touching moment.

We took a seat in a booth on the side of the dining room near the back. At first, Kate was quiet, not saying a word. Then with a touch of sadness she reached her hand across the table to me. I took her hand in mine, and she said, “Thank you.” I said, “For what?” She answered, “For taking such good care of me. You’re a good man.” At that moment, tears welled up in her eyes and in mine. I said, “We’re both getting sentimental, aren’t we?” She nodded. We didn’t say another word. We were silent for a few minutes. Then we went ahead as though that moment hadn’t happened.

I can’t be sure of exactly what was going through her mind, but here is what I think. She thanks me frequently, but last night was different. I believe she recognizes the fact that her memory is getting weaker and that it’s not going to get better, only worse. I don’t believe she remembers that she has Alzheimer’s or even remembers what that is. She only knows she is not functioning the way she should. I believe she knows our lives will not be the same again. Even if that is not precisely what she intended, I interpret her words as a way of saying goodbye.

Will I ever know what she was really communicating? Probably not, but it made me think of an experience our TCU friends Nancy and Charlie Hardwick had a few weeks before he died. He had shown signs of dementia a year or two before Kate. He looked up from his bed into Nancy’s eyes and said, “You know I’m dying, don’t you?” She did know, but she was surprised at his clarity in recognizing it himself.

I doubt that Kate goes so far as to see her present condition as a step in the dying process, but I believe she is coming to the conclusion that she won’t get better and is grateful that I am committed to caring for her whatever lies ahead. What makes me believe this? There are several things.

First, is that she has previously conveyed her awareness of her memory loss. Though it doesn’t happen often, she even says things like, “I don’t know what’s wrong with me?”  Second, she not only recognizes that she has a problem, she works hard every day to remember my name, the names of our children and grandchildren, what city we live in, the names of the restaurants we visit. She tries, often unsuccessfully, to repeat them as if she were trying to imprint them in her brain. She obviously cares. Third, although not all the time, she is bothered by her memory problem. Her two or three anxiety attacks have been ample evidence for me. Fourth, she frequently demonstrates an ability to correctly read what is happening around her. She understands matters of life and death and suffering. She is very responsive to news reports. While she can’t grasp the explanations of news, she frequently exhibits the appropriate emotional responses to them.

Finally, the emotional way in which she expressed her appreciation last night communicates that her sense of what is happening is far deeper than a casual instance of having a problem with one of her jigsaw puzzles and my helping her solve it. She knows she has a serious problem.

It wasn’t very long ago that I thought she would simply drift away without suffering any anguish over her illness. That is clearly not true. Now I am asking “How long will this last?” I really don’t want to see her enter the next stage, but I don’t like seeing her suffer.

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A Few Moments Ago at Panera

KATE: What’s your name?
RICHARD: Richard Creighton.
KATE: Your full name.
RICHARD: Richard Lee Creighton.
KATE: Richard . . . (Trying to think of the middle name)
RICHARD: It begins with an ‘’L.”
KATE: (No response. Still thinking.)
RICHARD: Lee.
KATE: Richard Lee Creighton. That’s not so hard. (Puzzled look on her face.)
RICHARD: Not too hard.
KATE: What’s my name?

I can’t imagine what it must be like to work so hard day in and day out to know something as important to her as her husband’s name as well as her own. Fortunately, this is one of the times that she doesn’t seem very frustrated or disturbed about not remembering though her puzzled look suggests a bit of concern.

Just as I was about to upload this to my blog, she asked again.

KATE: What’s your name?”
RICHARD: Richard Lee Creighton
KATE: I knew that. (But meaning, “I just couldn’t call it at that moment.)

One of the clues that convey the importance of my name to her is that all this time she has been diligently (it appears) working on her jigsaw puzzles. Then out of the blue, she looks across the table at me and says, “What’s your name?” It is obviously on her mind a lot. She wants to get it right.

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An Interesting and Very Nice Day

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

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

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

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

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

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

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

I would love to see another day like that today.