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Confused Upon Waking

Adapting to Kate’s sleeping later may be getting more complicated. Yesterday, she was up early. That worked well because she and I had a 1:30 appointment to have our picture taken in connection with the foundation on whose board I served for nine years. Not having to wake her made it less stressful getting her ready so that we could have lunch before then.

Today, however, she slept late again, and it is a day for the sitter. I turned on some music at 10:15. Then at 10:45, I tried to wake her. She wanted to sleep a little longer. At 11:30, I tried again. I sat down beside her on the bed and put my hand on her shoulder. She opened her eyes and looked at me. She looked confused and asked, “Who are you?” When I told her my name and that I am her husband, she looked shocked. Here is my best effort to describe the conversation we had over the next twenty minutes or so.

RICHARD:              “Yes, I am your husband, Richard, and we have been married for 55 years.”

KATE:                       “What is your name?”

RICHARD:              “Richard Lee Creighton.”

KATE:                       “Say it slower.”

RICHARD:              “Richard <pause> Lee <pause> Creighton.”

KATE:                       “What is my name?”

RICHARD:              “Kate Franklin Creighton.”

KATE:                       “Say it again.”

RICHARD:              “Kate Franklin Creighton.”

KATE:                       “Let me say it. . . Kate . . . Wait a minute; say it again slowly.”

RICHARD:               “Kate <pause> Franklin <pause> Creighton.”

KATE:                       “Kate Franklin Creighton.”

RICHARD:              “Yes, and we have two children.”

KATE:                       “We do? <pause> What are their names?

RICHARD:              “Jesse Brewer and Kevin Creighton.”

KATE:                        “What is your name?”

RICHARD:               “Richard Lee Creighton, and I am your husband.”

KATE:                        “You are?” (with a look of disbelief)

RICHARD:              “It seems like you feel comfortable with me even though you don’t recognize me as your husband.”

KATE:                       “Yes.”

RICHARD:              “That’s probably because we have been together so long. We have been very happy together.”

KATE:                       “We have?” (with her first smile of the conversation)

RICHARD:              “Yes. I think we are a perfect match (she smiled with approval), and we have two children that we are very proud of.”

KATE:                       “We do? Why can’t I remember that?”

RICHARD:             “Well, sometimes our memory fades as we get older.”

KATE:                      “I don’t believe you, but it’s nice of you to say that.” (She is still perceptive.)

RICHARD:            “I love you, and I’d like to take you to lunch.”

KATE:                     “Where are my clothes?”

RICHARD:           “They’re right here on the chair.”

Then I helped her get up. When she was dressed, she said she wanted to go to the  bathroom. She said, ‘Where is it?” There was more than I have quoted above, but I think this captures the essence of the conversation. There was a good bit of repetition, both in her questions and my answers.

From this point on she did not appear to be confused though she was still unable to remember that we have children. That has been common for weeks, perhaps months, now.

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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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A Day of Names

Kate frequently asks me to tell her my name and the names of our children and grandchildren. Yesterday was different in that it occurred so much. I suspect if we hadn’t had a sitter in the afternoon she would have asked me more times. As we left for Panera yesterday, she said, “What is your name?” She asked again at Panera. She also asked, “Where are we?” That is something else that occurred more often than usual. I often answer, “Knoxville where we have lived for 47 years.” She always expresses surprise about the number of years. This happened several times yesterday. A few times were so close together that even I was surprised she had no recollection of how long we had lived here. She also asked me where she was born.

When we got into bed last night, she said, “Do we have children?” I said, “Yes.” She said, “Two.” She asked me to tell her their names. It was said as if she were testing me and not seeking information for herself. It was clear as we talked that she really couldn’t remember. In a few moments, she asked me to tell her the names of our children again. Then again in another few minutes. When I tell her, she almost always follows that by saying how proud we are of them.

She asks the names of our children far more than any other names. As I have noted before, I take that as a measure of a mother’s love. She loves them dearly and is trying to hold on to their names as Alzheimer’s ravages her brain.

Perhaps because she has slept late recently, she has been quite talkative once we got into bed the past two nights. Her conversation (as it does during the day) focuses on the things she can remember – her mother and father, our marriage, and our children. She finds comfort in talking about these things. She talks mostly about our marriage, about our being well-matched, about our being meant for each other, that she would marry me again if she could, and that we have been so fortunate. I share her feelings. It makes me think of my parents and her parents. It was the same with them.

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More Confusion, But a Good Day

Yesterday we went to Nashville to visit our friend, Ellen, who had a stroke three years ago next month. She had lived in Knoxville until that time. She had the stroke while visiting her daughter in Nashville and has never returned home. We try to visit about once a month. She is now living in a memory care facility. This is the fifth place she has lived since we started visiting her.

Kate got up a little later than I had wanted, so we ate lunch before leaving. When I hadn’t heard any signs that she was up, I went back to the bedroom to check on her. I discovered that she was up and taking a shower. I glanced in the bathroom door to see a mound of clothes on the floor in front of the shower. She often takes her clothes for the day into the bathroom while she showers. What was unusual this time was that she had a variety of clothes, mostly winter clothes. They also included four or five tops and a couple of pants. I came back to the kitchen. When I went back fifteen minutes later, she was sitting on the bed. The clothes that were previously on the floor of the bathroom were now on the bed. It turned out that she had everything but her underwear. I asked if she would like me to get them. She did. When I returned, she said, “Thank you, whatever your name is.” I asked if she would like me to tell her my name. She said yes, and I did. On the way to lunch, she asked my name. I told her and then said, “What is your name?” She took a moment to think and then answered correctly.

She was very quiet on the way to see Ellen. When we arrived, she said, “Does this place have a name?” I told her we were in Nashville and gave her the name of the facility. This way of asking for a name is becoming more frequent now. Mostly, she says, “Where are we?” She has a similar expression when we are at restaurants. She says, “Does this place serve food?” This is a sign that she is ready to eat and thinks the restaurant is taking too long. She has no concept of time, so usually, it hasn’t been long since we ordered that she asks the question. Sometimes it occurs right after the server has walked away after taking our order.

Our visit with Ellen was one of the best we have had. I wish I could say that is because Ellen has improved. That wasn’t the case. In fact, her speech seemed to be worse than the last time we visited a month ago. At the time of our first couple of visits almost three years ago it was very difficult to understand her at all. Over the next year, she improved a good bit, but I would say we were still unable to understand about a fourth of what she said. In February of this year, she had a couple of seizures. They affected her mobility and her speech. Yesterday we could understand very little of what she said.

We got off to a good start. When we walked into her room, Ellen was lying down on her bed. Although I know her daughter had told her we were coming, she had forgotten. She was quite surprised to see us and very emotional about our being there. I don’t know that I have mentioned that Ellen is a very outgoing, take charge kind of person who had many friends in Knoxville. Because so many of her friends are about her age and travel to Nashville is a bit much for many of them, she has had practically no visits from them. We know of only one other couple from Knoxville who has visited her. In addition, most of the others in her memory care unit are unable to converse much. She must be starved for conversation with friends.

It was interesting to watch Kate’s interaction with Ellen. She took much more initiative in the conversation than she has done previously. She brought up the fact that the two of them used to have lunch together every Monday while I was at Rotary. It is interesting that this memory has not disappeared. She remembers other things about our relationship with Ellen and her husband, Gordon, but only when I bring them up. The Monday lunch is more firmly embedded in her memory. Something else was different about Kate yesterday. There were quite a few times when Ellen struggled getting her words out. In almost every instance, Kate tried to encourage her. She said, “Just relax. Take your time. You’ll get it.”

After we had been there a good while, I asked Ellen if the staff played much music for the residents. She said they didn’t. I suspect she just doesn’t remember. Ellen had been a choir director for almost 40 years. She was also a singer and played the piano. We began to talk about music. I mentioned that I remembered her son’s singing “Danny Boy” at a piano recital when our children were taking lessons. Then I remembered that I had a recording of “Danny Boy” on my phone. I played it for her. All three of us enjoyed it. That led to my playing several other pieces. It was a nice interlude in our visit. The music was beautiful. Conversation for Ellen was challenging. We let the music speak for us. At one point, Ellen reached her hand out to Kate who clutched it. I could see tears in their eyes. It was a touching moment to watch and be a part of.

Not long after that one of the staff came in to get Ellen up for dinner. I asked if she knew Ellen was a musician. She didn’t know a thing about her background in music. When I told her she was surprised. She said she was glad to know and would pass that along to the activities director so that she could take advantage of that. I wonder how many people in places like this are not fully appreciated because the people working there have no knowledge of who they were before their memory problems. I suspect this is true for most.

We left Ellen’s and went directly to dinner before driving back home. We stopped at McCormick and Schmick’s. As we waited for our meal, Kate looked across at me, put her hands around her mouth like a megaphone, and mouthed the words “I love you.” I told her I love her too. Then she said, “Tell me your name.”

The ride home was unusual. Normally, we drive this distance with very few words. I usually play music that I know Kate will enjoy. Last night, she was talkative. In fact, we talked most of the way back home. It got its start as we were leaving the restaurant. Our daughter, Jesse, called to check in. She updated us on her family’s recent trip to Florida. Kate was happy to hear from her and to know they had a good trip with the family. That must have prompted her to think about the good things in our lives. She talked about our marriage and how fortunate we are to have found each other. She talked about both of our children. I reminded her that our son, Kevin, and his family have just returned from an exciting trip to the Grand Canyon, Bryce Canyon, and Zion National Park. It makes both of us happy to see our children enjoying life and moments like these with their children.

As we neared our home, Kate said she was tired. Then she mentioned she wanted “to do some work” before going to bed. She quickly added, “You know the kind of work I mean.” I did know, working on jigsaw puzzles on her iPad. We had had another good day.

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Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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This time I got the right answer.

You may recall that I recently mentioned we had had a strange experience at dinner last Saturday night. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.”

At Panera yesterday, she asked the same question. This time it wasn’t in the context of something I was saying. We had both been silent when she said, “You know what I’m thinking?” This time I took a moment to carefully consider my answer. Then I said, “That you’re glad we got married.” She smiled and said, “That’s it.” I said, “Me too.”

I felt like I had scored a victory. She often says that she is glad she married me. That is why I guessed correctly this time. I think I missed it the previous time because it followed something I had told her. The context in which she asks her questions is often relevant to understanding what she is thinking. If I can’t figure out what she wants, she doesn’t help me. She just gives up. I wish I always said the right thing. I guess that is too much  to ask for.

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Another Good Day

It really makes me happy to say we had another good day yesterday. First, Kate was up in just as good a mood as she did the day before. She was alert and cheerful from the beginning to the end of the day. She was also up a little earlier. I liked that because it gave us more time together.

She always enjoys watching children wherever we go. That is another pleasure deriving from her intuitive abilities. There are limits, however. She loves watching them play and explore their surroundings. She is taken with the things they say, especially when they express they wants to their parents. She was enjoying one little boy who wanted to run around. The mother tried to restrain him. That was cute until the boy screamed. Kate finds screams or any sudden noise startling and offensive. When the boy screamed, she jerked in her chair and said, “Now that’s not cute.”

We had lunch at the Bluefish Grill. It is almost 25 minutes away from where we live. On the drive, I always play music that I think she will enjoy. Yesterday I played selected songs from Les Miserables. Once again, she loved it. I played another album on the way back. She loved it as well.

We spent almost two hours at home after lunch. Kate went through an old photo book of her family. Then she worked jigsaw puzzles on her iPad. Of course, I had music that we both enjoy playing all the time. It was a pleasant time. Then she was ready to leave the house. We don’t often stay here for more than a couple of hours. There was still a good while before dinner, so I took her to Marble Slab for ice cream. We had stopped there earlier in the week. It is next to Panera, and we love ice cream. It’s surprising that we hadn’t been there in almost three years. I don’t intend to wait so long again. Then we went to Barnes & Noble where we remained until dinner.

We had a strange at dinner. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.” We went on with our conversation and had a good time.

She was unusually talkative last night. She talked mostly about us and our marriage, how happy we had been, how well-matched we are. That continued after we got home. She talked about how comfortable she felt with me and how much she liked being with me no matter what we are doing. I told her I felt exactly the same way about her.

I am happy to hear her talking and being so expressive. At the same time, I keep wondering about what is motivating her right now. I sense that she feels her world is getting smaller. She remembers fewer things, and that increases the value of the things she does know and can appreciate. That leads to the conclusion of our day.

We had started watching a DVD of Sound of Music the previous night. We had only watched about forty-five minutes of it before she was sleepy. We watched another hour of it last night. She loved Julie Andrews and talked about her looks, smile, and singing but couldn’t remember her name. She repeatedly asked me her name. I reminded her of the time she was at the Jeu de Paume and saw Julie with her daughter. She had no memory at all.

She loved the scenery in the movie as well as the acting. She was talking during the movie. At one point, she said, “I know this is silly, but I feel like God sent you to me.” I said, “I know what you mean. I feel the same way about you.”

A few minutes later, she said, “You know, you give me energy.” It didn’t last though. She was sleepy. We decided to stop the movie right there and pick it up tonight. She had had a good day. So had I.

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Enjoying Special Moments and the Power of Music

Yesterday afternoon, I was reading an author’s essay describing why she had written a book after losing her mother to Alzheimer’s. She said that she wanted to lead others toward happiness that one often misses because of the sadness that is also a part of the journey. She felt she had let that sadness prevent her from fully appreciating the “happy moments.”

Her words made me think of another experience Kate and I had with music a little bit earlier. We returned home from lunch. We sat down in the family room, and I put on an album of the last half of Les Miserables. Since we had seen the DVD and listened to the audio over the past few days, I intended to select one or two songs that I knew were among Kate’s favorites. Once it started, I saw that she was taken by it and just let it play through to the end. Initially, she was working jigsaw puzzles on her iPad. Then she became more engaged in the music, and put the iPad down. I could see that she was moved. She said, “It’s so beautiful.” I agreed. Before the end of the finale, tears welled up in her eyes. She got up from her chair and walked over to sit beside me on the sofa. She was crying, not out of any sadness. She was solely moved by the beauty of the music. I put my arm around her. She put her head on my shoulder. We savored the last notes.

We sat quietly for a moment. I decided to put on another album I thought she would like. One by John Rutter. We continued to sit there another fifteen minutes enjoying the music. As I have said before, we have both enjoyed music together since our first date, but I believe the pleasure she derives from music has increased substantially. I am glad that we continue to enjoy happy moments like this. They have been able to override the sadness that I sometimes feel.

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Follow-Up on Dependence

Yesterday when I returned home to relieve the sitter, Kate was resting on the sofa in the family room. I walked Anita to her car to find out how things had gone. She said they had had a good day. She had met us at Panera but she said they didn’t stay long after I left. I was pleased to hear her say that they had spent a long time going through the photobook that Kate’s brother had made for her. She said that Kate enjoyed telling her about all the people in the pictures. This made me especially happy because I had been concerned that Kate was not enjoying her time with Anita as much as she does with Mary.

Anita told me that Kate had asked about me a couple of times, wondering when I would be home. That is the first time Anita has said anything like this. I took note because Mary has also mentioned Kate’s asking about me. Kate had wanted to be home when I got there. These are little things and may have no significance, but I think they are consistent with her increasing sense of dependence on me. It is more than just the things I do for her. From what she tells me, she just feels better when we are together.

After Anita left, Kate continued to rest a little longer. Then she was ready to go out. We went to Panera. We had been seated for about fifteen minutes, when she said, “I like Panera.” Then she commented on the general atmosphere and the people who were there. She continued working her jigsaw puzzles on her iPad. In a few minutes she stopped. She said, “I like being here with you.” I said, “I’m glad. I like being with you.” As she often does, she moved her lips to say, “I love you.” At the same time, she brings her index finger to her lips and then points to me. Then I said, “We’ve done many special things over the years. Many of them, like being together at Panera, have been ordinary things, but they’ve been special to us. And we’re going to have many more.”

I still see signs of Kate’s desire to be independent. At home after dinner, she brought out clothes for her to wear today. She had a pair of pants, a top, underwear, 3 pair of socks, and 2 pair of shoes. She does this once in a while. I take it as further recognition that it is confusing to get her things together at the last minute. This way it’s done for her when she wake up. Her dependence on me is even reflected in this simple act of preparation. She asked me to check her and make sure she had everything. I assured her that did. Moments like are very touching.

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A Quiet but Nice Day

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

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

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

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