Losing Two “Old Friends”

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

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 Recently, that has been replaced by a question.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

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

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

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

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

Kate’s Feelings about Things that Require “Rational Thought”

I have commented many times about the fact that people with dementia lose their rational thought processes. They gradually lose their memory of names, places, and procedures. On the other hand, they retain their intuitive abilities. They are able to enjoy music, beauty in nature and art, eating favorite foods, and socializing with friends and family. Kate and I have gotten along happily by focusing on her intuitive abilities and have minimized the importance of the rational ones that have diminished so greatly. Over time, I have begun to notice an interesting intersection of rational and intuitive thought and have been struck by this connection. Let me give you a few examples.

At lunch earlier this week, Kate and I talked about a friend of mine. She asked where he lives. I told her Columbia, South Carolina. She was curious about the name and wondered about its origin. I told her it was named after Christopher Columbus. She said, “Who is he?” I explained that he is often thought of as the one who “discovered” America. She was puzzled. That led to my trying to explain his attempting to find the East by sailing west. I mentioned that people used to think the world was flat. As you might expect, she was quickly overwhelmed by information and asked me to stop. Her rational thought processes were unable to absorb what I was telling her.

We had a similar experience another day this week. She said something funny. We both laughed. Then I said, “You can really be funny. I’ll be your straight man. We could put this show on the road.” I got a puzzled look. I could tell she didn’t know what I meant by “straight man.” Then I tried to explain it. I didn’t get very far at all. I told her about comedians who worked in pairs and that one would appear to be more serious and would say things to prompt the other person to respond with something funny. Then I foolishly mentioned Abbot and Costello, George Burns and Gracie Allen, and Dean Martin and Jerry Lewis. Naturally, she didn’t remember any of them. I told her we would look at some YouTube videos to help her understand. That diverted her attention, and we went on to something else. The important point is that she has an intuitive sense that leads her to want to know the answer to a question her rational thought can’t handle.

The jigsaw puzzles she works on her iPad represent the most relevant example in our lives. She loves working her puzzles. She often asks me what she can do after we come home from lunch, dinner, or other outing. I give her the same choices almost every time. No matter what options I give her she almost always chooses the puzzles. Once she starts them, she inevitably runs into a problem. Every problem arises from a failure of her rational ability. One of the most frequent ones is getting stuck in the store to buy more puzzles. There is a small green button with a shopping cart in the upper right-hand corner of the screen. She frequently touches it instead of the button that will take her to select the next puzzle. Similarly, when she is on the screen with the choices for her next puzzle, she often forgets that all she has to do is touch the puzzle she wants to work. She often asks me how to get to the next puzzle. Other times, she chooses the “Store” button instead.

This can be frustrating for her. She wants another puzzle, but she can’t remember how to get it. In other words, her intuitive thought exhibits a feeling of desire for a puzzle, but her rational ability doesn’t function well enough to do it consistently.

Another incident illustrates this intuitive desire to know without the rational ability to remember. Not long ago, she couldn’t remember my name. I said, I said, “That’s not important. You know who I am.” She quickly responded. “It is important. I should know your name.”

Now let me return to my comment about an intersection of rational and intuitive thought or abilities. It has been almost a year since I first read The Dementia Handbook in which the author, Judy Cornish, defines these concepts and explains their relevance for people with dementia and their caregivers. When I first learned about these concepts, I thought of them as completely independent abilities unrelated to each other. I am now discovering that is not so.

My error was failing to recognize an important intersection between the two. Our intuitive thought leads us to get the answers to questions or problems. That’s something every parent and school teacher observes on a daily basis. Very early infants and toddlers use their intuitive abilities to explore the world. Think about a young child who picks up an object, looks at it, puts it in his mouth, and/or bangs it against the floor. In each case, he is learning something about the world around him. The curiosity of children always intrigues me. Everything is new. They have very little in the way of rational abilities and want to learn about everything. Our rational abilities develop over a lifetime, and much of learning involves our intuitive thought that tells us this learning is important or interesting or both.

Kate was an English teacher for three years and a librarian for the balance of her career. Like other educators, learning (and this means a lot of rational thought processes) is something she values highly. She admires and respects people who have achieved high levels of knowledge in any field of study. Even at this late stage of her Alzheimer’s, this feeling about knowledge is strong. She expresses it when she overhears a report on the evening news and wants me to explain it. The sad part is that she is no longer able to learn the way she did before. The surprising thing is that she isn’t frustrated all the time.

Another Good Experience with the Sitter

I don’t have a good explanation, but Kate has seemed to accept the sitter happily over the past three weeks or so. Yesterday’s experience was the best yet. It reminded me of another experience in that I didn’t leave immediately after Mary arrived. I was trying to take care of some last-minute tax business and continued working at least another thirty minutes. I was in the kitchen and could hear the two of them talking but had no idea what they were talking about.

When I was ready to leave, I walked into the family room where Kate and Mary were seated side by side on the love seat. They were looking at one of Kate’s photo books. I assumed it was one of the family books. When I got closer, I could see that it was a photo book I had made two years ago with photos taken during several of our summer visits to Chautauqua. I stopped a minute and just listened. Kate was telling her about the beauty of the places in the photos. She came to one and said, “I don’t know what this is?” I told her.

Knowing that recently Kate has been unable to remember Chautauqua, I couldn’t help but wonder what she had been telling Mary. It was clear that she was saying something about the various pictures. I was just happy to leave her while she was having such a good time.

When I got home, they were seated in exactly the same place. This time they were looking at photos from an old album that I believe her father had put together. Kate said, “You should have gotten here earlier. We needed you.” I said, “What for?” She said, “To help us identify who all these people are.” I identified her mother and father. Before Mary left, she told me that they had taken a break during the afternoon. Kate took a nap. Then they went back to their photos. I felt good knowing that Kate had been perfectly comfortable while I was away. The way I saw them interacting was just like two friends talking. I consider that a real victory.

After Mary left, I sat down with Kate. We spent the next fifteen minutes looking at photos before she said she was getting tired. It was getting close to dinner time, so I suggested we get ready for our Friday night pizza.

I should add that one thing Kate has lacked the past four years is a close friend. Prior to that she and her friend Ellen ate lunch every Monday while I was at Rotary. They also got together one or two other times during the week. Ellen’s stroke changed everything. The stroke occurred while she was visiting her daughter in Nashville. She was never able to return to home and has been in memory care for almost two years. Kate and I visit her regularly, but that is very different from the kind of relationship the two of them had for so many years. Thus, the development of a closer relationship with the sitters could go a long way in filling the vacuum that Ellen left behind. I don’t expect the relationship to be the same as it was with her, but I feel encouraged by the way things are going.

A Different Day Yesterday

Kate has been unusually cheerful the past two weeks. Yesterday was different. It’s not that she was in a bad mood. She just wasn’t especially cheerful. Getting her up earlier than usual may have had something to do with that. On the other hand, it may have been one of those things that we can never explain.

We had a busy day that started with my appointment for labs prior to seeing my doctor next week. Until the past year, I have always had the earliest appointment I could get. Since Kate sleeps later than she used to, I have changed to 11:00. That is still early for Kate, but I am eager to eat as soon as I am up. I woke Kate at 9:15 in order to give her time to get ready without rushing too much. It was one of those days when she didn’t want to get up. She told me to go on without her. I told her I didn’t want to leave her alone. I apologized for getting her up and explained the reason. She still didn’t get up. I asked her to do it for me. She agreed and did so well getting ready that we had time for a quick stop for a muffin at a Panera not too far from my doctor’s office.

From the doctor’s office we went directly to lunch with one of our associate pastors. We had a nice time, but Kate was not very talkative and cheerful. She actually snapped at me as I offered my hand to assist her in getting up as we were leaving. She had a hangnail on her left thumb and thought I was going to grab it. It was a nice lunch, but Kate wasn’t at her best.

We had a couple of hours before taking her for a massage. She rested at home most of that time but got up easily when I told her it was time to go. The past couple of times she has said she didn’t want to get a massage. This time she didn’t say a word. She went happily.

Two weeks ago when she had her last massage, I talked with one of the staff in the front office. I told them I thought we might be coming to the end of her massages. I told them I would like to try at least once more. We talked again this time. Kate had been so accepting that time, I thought it would be good to try again. I scheduled yesterday’s appointment. When I went back to pick her up, I waited a few minutes. Then the woman who gives her the massage came out and told me that they had finished, and she had left Kate to get dressed. When she went back, Kate was lying down on the table and had not dressed. I went back and helped her. She was confused. I don’t think she realized that she was supposed to get dressed. When she was ready, we walked back to the front desk where I discreetly cancelled the next appointment. I don’t plan to schedule any more.

The highlight of the day came when we returned home. Kate noticed the photo of her and her brother on the cover of her “Big Sister” album and said, “I just love that picture.” She commented on the smiles of the two children. I said, “Do you know who they are?” She did. I asked if she would like to look through the book. For the next hour we went through most, but not all, of it. She expressed more enthusiasm than she had all day.

I continue to find mystery in the way her brain works and doesn’t work. As we looked at pictures of her family, she sometimes recognized her mother, father, and brother. Other times, she had no idea who they were. Often she looked at two pictures of her father that were side by side on the same page. She asked, “Who is he?” I told her, and she asked, “What’s his name?” I told her. Then she looked at the other picture and asked the identical questions. We went through the book for an hour repeating these questions and answers. Of course, some of the confusion involves the fact that the way people look changes significantly over time, but the big problem is Alzheimer’s. I’m just glad she had that hour to really enjoy herself.

Last night we went to Casa Bella for jazz night. That is always a hit. She enjoyed it, but the experience wasn’t as good as usual. We always sit with the same couple. Often no one else joins us. If so, it’s just one other couple. Last night we were at a table with seven other people three of whom we hadn’t met before. This made conversation a bit more challenging. Kate was quieter than usual. She enjoyed the music, but I am sure she was uncomfortable in the larger group.

Looking back, it wasn’t a bad day at all. It just wasn’t like the ones we have had recently. Most days are very good. I’m sure we will have many more in the days ahead.

Anxiety Attack Is Over

As in the past, Kate’s anxiety attack didn’t last long. It was over before she went back to sleep. When she awoke, she was just fine. We enjoyed ourselves at lunch. I didn’t ask if he knew my name, but I believe she probably did and that I am her husband.

This is our day for a sitter. When I left, she and Mary were seated on the sofa looking at a photo album of Kate’s father’s family. The only thing Kate said when I said goodbye was “What are we going to do?” I told her she could look at photo albums, work jigsaw puzzles, watch DVDs or YouTube video, or go to Panera. That satisfied her. She was just fine. In fact, she has reacted very positively to her sitters the past two weeks. I love it.

Another Anxiety Attack

In the past I’ve suggested that it is hard to predict exactly what lies ahead in our future. That is true for everyone, but it seems to be especially noticeable in the lives of people living with Alzheimer’s. It certainly is for us. I was reminded of that around 6:30 this morning. I had just gotten up and entered our bathroom when I heard Kate say, “Hey.” I opened the bathroom door and saw that she was sitting up in bed looking at me. She looked as if something were wrong. I asked if she were all right. She said, “I don’t know. I want to go to the bathroom.” She was shaking and uneasy on her feet. She held my hand most of the way to the bathroom before she felt secure enough to let go. On the way, she asked, “Where are we?” I told her we were at our own home in Knoxville.

When she got up from the toilet, she wanted to brush her teeth. As she walked to the sink, she said, “I’m not myself.” She repeated that several times over the next few minutes. She finished brushing and said, “I’ll be glad when this is all over.” I’ve heard her say this several times in the past and don’t know what she means. I’ve asked before though not this time. She always says, “You know.” Over the next few minutes she said, “I’m not myself. I don’t know what’s going on with me.” I can’t remember what it was, but she said something else that was a clear recognition that something is wrong with her.

I took the approach of comforting her without any attempted explanations. When she said, “I’m not myself,” I said, “I can tell that, but I want you to know that I am here to help you. I will always be with you.” We walked back to the bed. I helped her in. I told her I would stay in bed with her. She said, “Oh, good.”

For the next forty-five minutes, we lay in bed facing each other. She wanted to hold my hand. We spoke very little. She asked my name one time. I said, “Richard. Richard Creighton, and I am your husband. You are Kate Creighton, my wife of almost fifty-six years.” She looked puzzled but didn’t say anything. In a while, she said she was feeling better. When I could tell that she was asleep, I got up. She is still sleeping as I finish this post.

These attacks and milder experiences of knowing something is wrong remind me of my mother who had dementia. I remember so well her saying, “I don’t know what’s wrong with me. I can’t remember anything.” I also recall times when I’ve heard people say, “At least, she doesn’t know.” I’ve realized all along that people with dementia often know that something is wrong even if they don’t know what it is. And it bothers them. What I didn’t expect was that Kate would have these experiences so late in her journey. At this point, I doubt that she has a concept of Alzheimer’s or dementia, but she is able to tell that “I’m not myself.” Those are the moments that are hardest for her. They are for me as well.

Still Having Fun

A little while ago, I posted a picture on Facebook. It was of Kate and me taken at lunch on Sunday with a rather large piece of chocolate cake in front of us. A friend asked if it was a special occasion. I replied that we make every day a special occasion. I really meant it as a playful response, but we really do make everyday situations special. In the middle of all Kate’s changes, we continue to have fun.

At the moment, I am thinking of experiences we had at lunch time today.
As we walked along the restaurant’s outside patio, I heard a song that was popular in the 60s and asked Kate if she would like to dance. She said, “No, but you can.” I took her up on it and started dancing while she watched. The song ended, and she applauded. We both laughed and opened the door. That’s when we saw several servers who had been watching us through the window. I felt a little silly, but they seemed to get a kick out of this old couple having a good time.

We had another moment of laughter when Kate asked the name of the restaurant. I said, “Tony’s Kitchen.” She tried to repeat it and said, “Tony’s Chicken.” That led to a few minutes during which I attempted to teach her that it was “Kitchen” not “Chicken.” I was never successful, but we both enjoyed a good laugh.

It’s spring, and Kate loves the azaleas. It is impossible for her to remember what they are called. She refers to them as “those pink flowers.” She has always enjoyed “the green” of trees, shrubs, and vines. The new growth of leaves on the trees has added to her pleasure. The beauty of spring makes even a routine drive to and from a restaurant special.

Moments like these are good for both of us. They help us maintain a positive outlook while “Living with Alzheimer’s.”

Our Weekend Trip to Nashville

Kate and I don’t travel much any more, but we did make an overnight trip to Nashville this past weekend. I have pretty much ruled out trips of anything more than a couple of days, so I’m glad to say that this one went well. We had a nice dinner at McCormick and Schmick’s after leaving the Davises. Kate turned in early while I watched the Texas Tech/Michigan State game.

When Kate woke up Sunday morning, she looked over at me at the desk where I was working on my laptop. I got up from my chair and walked toward her. She said, “Richard?” I said, “Yes, did you think I was someone else?” She said, “I was hoping it was you.” I said, “That must have been scary if you thought I might be someone else.” She said, “Not really scary, but . . .” She couldn’t think of the words to say what it was like, but she was definitely relieved to know it was me. This is just one more occasion when I try to imagine what it is like to wake up and not have any idea of where you are. Even though this happens to her at home, I feel sure there is a certain amount of comfort in being in “familiar” surroundings. Being in a hotel doesn’t offer that.

From there we went to brunch at Maggiano’s. When we checked in at the hostess stand, the managing partner was standing there. I don’t know what he said, but he and Kate got into a brief exchange in which each was kidding the other. I had a difficult time getting her away to follow the hostess to our table. It was one of those times that I pulled out one of my Alzheimer’s cards. Shortly after we were seated, the manager came to our table and thanked me. He said he had an aunt with dementia, and something Kate had said made him think she might as well.

Kate had brought a TCU magazine with her. He noticed that and said that he had worked in several restaurants in Texas. He and Kate connected once again. She enjoyed hearing him talk about her home state, especially since he had enjoyed his time there. Our server was very helpful with the menus that included both brunch and regular menu items. She was also very attentive. We were off to a good start. About mid-way through our meal, an assistant manager dropped by to check on us. We had a good conversation with her. When she left, she dropped a card for a free dessert. We took advantage of the offer and had an enormous piece of flowerless chocolate cake.

After eating, we were off to Ellen’s memory care facility. We had another good visit with her. We chatted for about an hour before turning to YouTube for music. This time we viewed segments from several Andre Rieu concerts. Once again, music played an important role in our visit. That is becoming more important as her ability to talk continues to decline though not too much since last time.

It was a successful trip. I will consider making Nashville an overnight trip in the future – at least as long as it works for Kate. Seeing friends in the afternoon, having a nice dinner that night, brunching at Maggiano’s, and visiting Ellen makes for a nice weekend.

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.

A Nice Visit with Longtime Friends

Several of our longtime friends live in Nashville, and we have visited all of them periodically for many years. During the past six to eight months, we haven’t done as well. We have continued to see our friend Ellen who is in memory care there, but I have not been good about arranging visits with the others. I miss seeing them and need to make a serious effort to see them more during the rest of the year.

As a first start, I arranged for us to see Ann and Jeff Davis in connection with our regular visit to see Ellen. Because Kate has often slept so late, we have been getting to Nashville late in the day to see her. That puts us back in Knoxville later than I like. This time I decided to visit the Davises in the afternoon and stay overnight at a hotel. That way Kate can sleep late, and we will be able to see her earlier. So far that is working well.

Even though she can’t remember, I always tell Kate where we are going and who we will see. I did that the day before we left, the morning we left, and even in the car on the way. When we parked at their house, I said, “This is the Ann and Jeff Davis’s new house. She said, “Who are they again?” I explained a little about our history together and told her that she and Ann had been very close when they lived in Knoxville. She surprised me when she said, “She and I used to talk a lot about our daughters.” That was the first time in recent memory that I can remember her recalling something like that. She didn’t say anything more specific, but I remember they talked about their daughters who are the same age and attended the same schools during middle school and high school.

In advance of our visit, Ann and I had several email communications. She had asked advice about engaging in conversation with Kate. I gave her a few suggestions and explained how well she has been able to get along and that I expected it would be the same on this visit. We got off to a good start when Kate noticed the flowers planted around their house. Ann and Jeff had seen us coming up the walk and came out to greet us. Ann and Kate had a few minutes to connect as they talked about the flowers and trees at the back of the house.

As we walked inside, we took a tour of their new home. It wasn’t planned at all, but we divided up so that Ann took Kate and Jeff took me. I think that made for a good beginning. I believe that gave Kate a chance to reconnect with Ann before the four of us sat down to visit. Kate took great interest in their home. For the next two hours we sat on their sun porch and talked.

Some of the conversation was between Ann and Kate and some between Jeff and me. For the most part, however, it was the four of us. Kate was not especially talkative, but she was comfortable and participated without any problem. As in other conversations, Kate said things that are not correct. For example, Ann asked if we used our pool very much. Kate told her that she used it more than I. The truth is that neither of us has used in much in recent years and that I am the one who occasionally takes a swim. In fact, I have recently suggested that we use it more this summer. Each time I’ve mentioned it, she has balked. I don’t mean to suggest that Kate wasn’t telling the truth. She just can’t remember. In conversation, her imagination takes over.

We could have talked much longer, but I felt it was time for us to check into our hotel and have dinner. As soon as we closed the doors to our car, Kate said, “I like them.” Once again, I thought about Kate’s intuitive abilities. Kate and Ann had been very close friends. Kate can’t remember that, at least not very well, but her feelings for Ann were rekindled just by being together. I don’t think it relates to something special that Ann said to her. I think there was something Kate was able to pick up intuitively that made the difference. Once again, I am struck by the power of her intuitive thought. It has carried us a long way.