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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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An Early Start Today

I don’t know what has happened, but Kate was up early again this morning. At 8:35, I heard her say, “Hey.” I was in the kitchen. Before I could get back to her, she had said “Hey” a couple of other times. Note that this is a new way to call me. Until the past few days, she has called my name. It may be that she is substituting “Hey” because he doesn’t remember my name. She was standing in the middle of our bedroom and wanted to know what she should do. I asked if she were ready to get up. She said she was, so I told her she might want to take a shower. She said, “Where?” I pointed to our bathroom. Then she asked about her clothes. This was a morning I had slipped and not put them out for her. I said I would be glad to get them. She said, “That would be nice.”

Fifteen minutes later, I checked on her. She was sitting in a chair across from the bed where I had laid out her clothes. I asked if she needed anything. She said no. Then she asked, “Who are you?” I gave her my name and said, “I am your husband.” She gave me her usual look of surprise. My curiosity got the better of me, and I asked, “Who did you think I was? Your boyfriend?” She said, “I don’t know.” I went to the bathroom to brush my teeth. When I returned, she said, “Are you my father?” I said, “No, I am your husband.” This time she didn’t look surprised and said, “I guess I’ll get used to it.”

I checked on her again at 9:40, she was in bed. It is not uncommon at all for her to get back in bed. Normally, she does this before dressing. I could see her top and pants on the floor. I asked if I could help her. She said, “Get me some clothes.” That was not said as a command but as an answer to my question. I handed her the top and pants. I asked if she were wearing her underwear. She said no. I found them and gave them to her. Her shoes and socks were on the bedside table. I said, “I’m going to leave you and let you dress.” She said, “Don’t leave me.” This, too, was not said with the sound of an order but as a plea. It turned out that she thought I was going to leave the house, and she would be alone. That sent me an important message about the value of having a sitter. She may prefer having me to having a sitter, but she doesn’t want to be left alone.

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Miscellaneous Notes from Yesterday

For the second day in a row, Kate got up on her own, this time about 10:25. She didn’t shower, so we made it to Panera shortly after 11:00. She was in a very cheerful mood. On the way to Panera, she whispered, “Tell me your full name.” That is the first time I recall her whispering in the car. She does it periodically at home. I’m not sure why. I suspect it is because she either thinks we have guests in the house or that we are staying in someone else’s home.

At lunch, she said, “What’s the name of this restaurant?” I told her, “Applebee’s.” In the next few minutes she asked two other times. The last time she said, “I know I’ve asked you before. I should remember that.” I said, “That’s all right. You can ask as many times as you want.” Then she asked my name. I told her and reminded her we have been married 55 years. She said, “Do we have children?” I told her we do, and she asked their names. I am no longer surprised at these conversations. They happen every day. I am just happy that she is able to ask so naturally without being too self-conscious about it. That is so much better than those moments when she is completely disoriented and has an attack of anxiety.

Following the experience we had last night, we spent some time in the family room. When I was ready to take my shower, Kate told me she was getting tired and having a little trouble with her puzzles. I told her I would put on some music in our bedroom, and she could get ready for bed. I brought her a night gown and put it on the bed. She was unsure of what she should do and asked, “What do I do now?” I told her to take off her clothes and put on her gown. She was still confused. I walked her through each step. When we were finished, she said, “I am glad I have you. I know that if something goes wrong, I know you will take care of it.” I definitely feel appreciated. I know that some caregivers work faithfully and don’t hear words like that. That’s another reason to be grateful.

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Waking Up This Morning

Kate was sleeping soundly when I woke her this morning. I put on some music, but she continued to sleep, so I went into the room and sat down on the bed beside her. She opened her eyes but didn’t say anything. I asked if she would like me to take her to lunch. She nodded. I sat there a few moments. Then we had the following conversation.

KATE:  “What’s your name?”

RICHARD: “Richard Creighton.”

KATE: “Richard Creighton.” (pause) “Say it again.”

RICHARD:  “Richard Creighton.”

KATE:  “Richard Creighton.” (pause) “Who are you?”

RICHARD: “I’m your husband.”

After another moment or two:

KATE:  “Where am I?”

RICHARD:  “At home in your bed.”

KATE:  “Where’s my home?”

RICHARD:  “Knoxville, Tennessee.”

Shortly after that, she got up and is now taking her shower.

I relate this incident to convey just how much of her memory she has lost in the past few months. There is something else. I am amazed at how well she adapts to having so little memory. Except for several attacks of anxiety mentioned in other posts, I haven’t noticed any display of anguish. That doesn’t mean I haven’t observed anything else that might be a symptom of her concern. Day before yesterday, she was quiet most of the time I was with her (until bedtime when she was talkative). When she has her quiet moments, I wonder what she is thinking. Is she thinking about herself and what she can’t remember? Is she wondering what is the matter with her? I suspect so. She is very perceptive and insightful. I am still surprised when she makes comments about me that are very much on target. She can’t remember my name. Sometimes she doesn’t recall that I am her husband, but she has a good grasp of who I am in terms of personality. She knows my OCD tendencies. She has always been a good observer of her own qualities. That makes me think that she may be suffering more inside than she lets on.

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Another First

When I turn off the main road into the shopping center where Panera is located, Kate often says something like, “Surprise. Surprise.” or “I know where you’re going.” Not so this morning. Instead, she said, “Where are we going?” Thinking that she would soon catch on, I said, “I think I’ll let you guess.” As we got closer, I asked, “Do recognize anything now?” She didn’t answer. When I pulled into a parking space, she said, “Panera.” I said, “You got it.” She said, “Well, I saw the sign.” This is a little thing, but it’s another sign that the connections with familiar places are weakening.

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A Trip Forgotten

Yesterday morning, Kate was worn out from the weekend trip to Raleigh and Chapel Hill. I finally woke her at almost 11:00 so that we could get bite to eat and take a quick look at several places in Chapel Hill that I hoped would bring back memories for both of us. It worked for me but not for Kate. Her memories of people and places come and go. They have been going more lately. That was the case for Chapel Hill. I had looked forward to rekindling the feelings of the past, but it was not to be. I don’t mean that she didn’t enjoy the experiences we had. That would be especially for our time with the Stones and Evelyn Schmidt. The problem was that she was never able to remember our connections to these friends nor this part of the country where we spent three years early in our marriage.

It was, however, very important to me. I remember our time there when we were much younger, and I remember this past weekend. Yesterday, Kate didn’t even remember that we had been there over the weekend. As she continues her decline, I find myself more frequently reflecting on our past but also trying to keep in mind that we are still creating new memories. I know that I will reflect on them in the years ahead.

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Kate’s memory is fading quickly.

There is no way that I can measure the speed at which Kate’s recent decline in memory has occurred. I only know that she has changed more in the past two months than I can recall for any period since her diagnosis. It is no wonder that she has periodic attacks of anxiety. It’s harder to understand why she hasn’t had more.

Her sense of direction has always been poor, but her difficulty knowing where to go in the house has surprised me. I hadn’t really thought about this before. I guess I assumed she would be on autopilot in the house forever. To some extent, she still is. Yesterday, for example, she said, “Where is the bathroom?” I told her I would show her and walked her toward our bedroom. As we were leaving the family room, she turned and went into the guest bathroom. That is the one she has used most often. She must have recognized where she was the moment she walked out of the family room.

Earlier today at Panera, I asked someone I know at a nearby table to watch her a minute while I went next door to make an appointment for Kate to get her nails done. When I came back, she said, “What’s my name?” I gave her the full name, and she asked me to repeat it.

She got along well yesterday. I don’t mean that her memory was any better. I mean that she isn’t showing any sign of unusual worry or concern over her memory. I sat in the waiting area of the nail salon while she is finishing up. She  handled herself well with the person taking care of her. When I left her, there was a brief moment when she seemed to be concerned that I was leaving her. I told her I would be next door at Panera. On the whole, it is still amazing how well she gets along in brief social encounters.

Last night, we went to Casa Bella for Broadway night. We had another good evening, but it was a very challenging one for Kate. We sat at a larger table, and the entire crowd was noisy. There was absolutely no way that she could keep up with the conversation. At first, she tried. That required her asking others or me to repeat things just said. It didn’t take long before she just bowed out of the conversation.

When we got home, she walked to our bedroom without any problem. In a few minutes, I went to the bedroom. No lights were on. She was standing in the middle of the bedroom. She asked where she should go. I told her she could stay right there in the bedroom and that I would get a night gown for her. She went through the usual challenge of getting her clothes off and putting on her gown. Sequencing is a problem for those with dementia. Getting dressed or undressed involves sequencing. Now that I’m watching and helping her dress, I am getting a better understanding of this issue. I am beginning to help by telling her what to do at each step (take off your shoes, your socks, etc.).

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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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Forgetting Les Miserables

We went to Panera for lunch today. In the car, Kate asked my name. After telling her, I mentioned Jesse. She said, “Who?” I said, “Jesse is our daughter.” She said, “What’s her name again?” I told her. Then I told her the names of her husband and their sons. At lunch, she asked my name at least three or four times. She asked her father’s name and her own.

I told her that this afternoon I was going to meet with our insurance man who is retiring and wanted me to meet the man is taking his practice. I also mentioned a dental appointment after that. Then I told her that Mary would be staying with her and that I had set up the DVD player for them to play Les Miserables if they wanted to. She looked puzzled and asked the name again. When I told her, I was the one who was surprised. She didn’t remember the musical at all. She said she would try it but didn’t express any enthusiasm. It was hard to believe we have watched it so much over the past seven or eight weeks. It seems like her memory is getting worse each day.

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I love it when things go well with the sitter.

Recently, Kate has indicated that she likes being with me and that she feels “safe” with me. I suspect that she means something more than safe. I think she is expressing her dependence on me. She feels secure with me because she can ask me anything. I don’t  believe she feels the same way with our sitters. Several times lately, she has given me a scowl as I left her with them. She has been very careful not to convey this to the sitters themselves, at least when I am there.

Yesterday, when I got back from Rotary and a meeting at the Y, I found Kate and Anita sitting on the sofa in the family room going through one of her family photo books. This one focused on her mother’s family. While I was bringing in some things from the store and looking at our mail, the two of them continued for another ten minutes. They both seemed to be happy. That really made me feel good.

A little later at Barnes & Noble, Kate was working on her iPad when she needed help with several of her puzzles. This was far from the first time, but the specific problems suggest how difficult they are getting. She gave up on two of them and let me finish them for her. On another, she had only three pieces to complete the puzzle and was stumped. This is a 16-piece puzzle, so the pieces are large. One of the pieces was a corner. I showed her the piece and explained that it had two flat sides and would have to go in one of the corners. Then I showed her the three corners that were already filled and pointed to the empty space at the bottom right corner. I told her the piece would go in that spot. She didn’t understand. I put it in for her.

Next, I showed her the empty adjoining spaces and the two pieces that would go there. She couldn’t tell which one went where. This must be getting frustrating for her. I do hope that she doesn’t have to give up her puzzles.

It wasn’t long before she asked my name. I told her. She started to repeat it. Then she said, “Tell me again.” I told her. Within minutes, she asked again. I told her. She asked again. I told her again. Then she said, “And I am?”

We went straight from Barnes & Noble to Chalupas for dinner. Then we came back home. She went to brush her teeth. When she didn’t come into the family room, I looked for her. I found her in the hallway. I said, “There you are. I was looking for you.” She said, “Where do you want me?” I told her our bedroom and that she might want to get ready for bed. She asked me to get her something to wear. When I got back to her room, I found that she had been in bed in the guest room next to our bedroom. It was obvious that she had gotten confused about where she was to go.

At dinner, she told me she was tired and not likely to last long. She was right. She called it a night just before 9:00. Before she got to sleep, I walked into the bedroom humming something. She laughed and said, “You’re cute.” Then she said, “What’s your name?” And then, “What’s my name?” A few minutes later she said, “Where are we?”

It was a nice day, but I really wish she didn’t have to go through this.