Our Easter

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

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

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

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

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

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

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

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

The Fickle Nature of Memory

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

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

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

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

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

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

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

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

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

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

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

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

Kate:              “Me.”

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

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

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

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

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

Kate:              “I don’t know.”

Richard:        “Those are you.”

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

Richard:        “Each one of those is you.”

Kate:              “That one too?”

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

A Page Later

Kate:              “Oooh. That’s wonderful.”

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

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

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

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

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

Brief Conversation This Morning

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

Richard:        “I love you.”

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

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

Kate:              “What?”

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

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

Growing Confusion

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

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

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

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

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

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

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

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

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

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

An Unusual Start This Morning

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

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

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

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

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

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

An Example of Kate’s Rational and Intuitive Thinking

Shortly after 7:00 this morning, I looked at the video cam and noticed that Kate was up. I went to the bedroom just as she was coming out of the bathroom. She gave me a nice smile. I hugged and greeted her. Then she got back in bed. As I was about to leave the room, we had this brief conversation.

Kate:              “Where are we?”

Richard:        “In our home in Knoxville.”

Kate:              “It’s nice.”

Richard:        “Yes, there’s no place like home.”

Kate added: “With you.” <pause> “What’s your name?”

I didn’t try to determine if she knew that I am her husband. Based on recent experience, I would say there was a 50/50 chance, but her intuitive ability enables her to respond to me as someone she recognizes and cares about. Something very similar occurred last night when we went to bed. She moved close to me and put her arm across my chest. She said, “I love you. Good Night.”  Then she asked my name and hers.

A Taste of This Morning’s Conversation

At almost 9:00 this morning, I saw that Kate was getting out of bed. I went to her and asked what I could do for her. She asked me to get her clothes. I asked if she wanted to take a shower first. She did, and we walked to the bathroom. As I started to get the shower ready for her, she took off her night gown, and we had the following conversation.

Kate:              “What is your name?”

Richard:        “Richard.”

Kate:              “What’s your full name?”

Richard:        “Richard Lee Creighton.”

Kate:              “What’s my name?”

Richard:        “Katherine Franklin Creighton.”

Kate:              “That sounds right. And who are you?”

Richard:        “I’m your husband.”

Kate:              “Noooo.”

Richard:        “Let’s talk about that later. Why don’t you take your shower now.”

Kate:              (Getting into the shower) “Who are you?”

Richard:        “Do you think I’m a friendly guy?”

Kate:              “Yes.”

Richard:        “I’m your husband.”

Kate:              (Puzzled look) “Okay. <pause> What’s your name?”

Richard:        “Richard Lee Creighton.”

Kate:              “What should I call you?”

Richard:        “Richard.”

After her shower, she went back to bed for about forty-five minutes. Then she got up to dress. She didn’t ask my name or who I am. She acted as though she knew. I wanted to ask but didn’t. I think she knew.

Sunday’s Lunch Conversation

Just a short note to say that Kate and I had another interesting conversation at lunch on Sunday. We ate at Andriana’s. Before we reached our seats, she pointed to a photo of Frank Sinatra. I told her who he was. That began our customary conversation about him. She asked if I had told her about the time she and her mother had eaten there. She hadn’t. No surprise. Her mother died before we started eating there. She pointed to a photo of Sinatra and proceeded to tell me that her mother looked it and asked who it was. Kate told her it was Sinatra. She said her mother was vaguely familiar with him. She told her about his relationships with women, and that was all her mother needed to know. They didn’t go any further.

It is interesting to me how much she is drawn to his pictures. There are other pictures and art work in the restaurant. The only other thing she has been curious about is a large poster of a bottle of Cinzano vermouth. Even that has only come up in the past six months. It came up again Sunday. She always wants to know what it is. I tell her, but, of course, it is impossible for her to remember.

Kate is at least occasionally aware that she frequently asks me about Sinatra. Yesterday she said, “I know I’ve asked you before. I don’t know why I can’t remember.”

Apart from Sinatra, we had another interesting, though brief, conversation. It grew out of something one of us said about our having grown up so far apart. That led to a discussion of how the choices we make can open or close doors for us. Before choosing to go to TCU, I had considered going to college in Florida where I grew up. Kate chose to go out of state her freshman year but returned home and to TCU for the rest of her college education. From there we talked about other choices that we and others make about our life styles and health and nutrition. This was not a deep conversation, but it was another reminder of the kinds of things that she is still able to do without a memory.

Yesterday’s Mid-Day Conversations

Before, during, and after lunch yesterday, Kate was quite talkative. Not just talkative but engaging in conversation that might surprise someone who knows that she has Alzheimer’s and that her diagnosis was over eight years ago. Even I was a bit surprised. It began in the car when I played a Louis Armstrong album, What a Wonderful World. I said, ‘Isn’t it ironic that he sang that song while most of his life he couldn’t even stay in the same hotels where white celebrities stayed.” She asked why, and I explained about segregation. That led to a conversation about the civil rights movement. I knew she couldn’t remember any details, but she did have a recollection of that period of time and had strong feelings about it. She couldn’t understand why life was so segregated. We talked about the integration of public schools and how frightened the first black children must have felt as they entered their new schools. She said, “We’ve come a long way, but there is still a long way to go.”

At the restaurant I ordered the same salad I get every Saturday. It has mixed greens that I like, but yesterday it was different. It was overwhelmingly one particular type. The good news was it was one I like. One of the first times I had the salad I asked our server what it was. She didn’t know and asked several other staff who didn’t know either. Yesterday we had a new server. I asked her if she knew what it was. She didn’t and said she would ask the kitchen staff. Before she got back with their answer (No.), I googled types of greens and thought it might be endive. Then I googled “pictures of endive.” Bingo! That was it.

That led to another brief conversation. I said, “That’s a good illustration of how many things we don’t know, but we encounter every day.” That made me think about the curiosity of little children and how quickly they learn about the world around them. I mentioned that to Kate, and she agreed. Then she went on to talk about how children touch or pick up things that are new to them. She also talked about their asking questions of their parents. It was fascinating to listen to her. Her memory for names and places is virtually gone, but she clearly retains a memory for some general patterns of behavior like those of children. It’s no wonder that people with dementia can get along for such a long time before others recognize the problem.

On the way home, she kidded me about something. Then she said, “I think I’ve been around you too long.” She obviously remembered that I joke a good bit. I said, “Do you know how long?” She didn’t. I said, “In two months it will be fifty-six years since we married, and we dated a year and a half before then.” She said, “And I still love you.” I said, “And I love you.” There was a pause as I thought about the fact that she hadn’t asked my name since she got up. I rarely test her, but I said, “And I bet you remember my name.” It was her time to think. She finally gave up and said, “What is it?” I said, “Richard.” Then she said, “Richard Lee Creighton.” It isn’t often that my first name is all the prompt she needs to get the rest of my name, but it worked this time.

In our conversations, I see what Kate can (intuitive abilities) and can’t do (rational abilities). I am grateful that we derive so much pleasure from the intuitive ones.

An Early Morning Conversation

Kate got up at 4:30 this morning to go to the bathroom. As I walked her back to bed, she started a conversation that lasted about fifteen minutes. Here’s an excerpt.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “Really? It’s a nice place.”

I got back in bed.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “It is?”

Richard:        “It really is.”

Kate laughs loudly when she realizes she hasn’t recognized her own house.

Richard:        “I love you.”

Kate:              “I love you, too. <pause> What’s your name?”

Richard:        “Richard.”

Kate:              “What’s my name?”

Richard:        “Kate, and we are a pair.”

Kate:              “We’re a good pair. Where are we?”

Richard:        “We’re in our house in Knoxville, Tennessee.”

Kate:              “I like it. We’re lucky.”

Richard:        “We’re very lucky.”

Kate:              “Where are we?”

I love our conversations. We are lucky.