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Another Slow Start, Confusion in the Evening

Once again, Kate slept late, and, once again, I had difficulty getting her up. Since I knew the sitter was coming at 1:00 and that I was trying to get to the Red Cross for my platelet donation, I pushed a little harder to get her up. That may account for the fact that she was grumpier than yesterday. As we prepared to walk out of the house, she apologized twice. We left for lunch at 12:30. I called Mary and asked that she meet us as Panera so that I could eat and go directly to my donation.

Before Mary arrived, I reminded Kate that this was the day for my platelet donation and that Mary would meet us and take her home. That didn’t seem to bother her at all. I was glad about that. When I got home, Kate and Mary were in the family room. Kate was working on her iPad. After Mary left, I walked over to Kate, and she rolled her eyes. It was clear that she didn’t like being left with a sitter, but she didn’t make an issue of it.

It wasn’t long before we went to dinner. Near the end of the meal, she said, “We were really lucky to have those women who took care of him.” I didn’t know who she was talking about. She continued. It sounded like she was talking about her sitters. Then she mentioned how much I helped her. She said, “I could have done it without you, but you made it so much easier.” I asked who she was talking about and discovered she was talking about the helpers who took care of her mother.

She continued to talk about the good care her mother had gotten and how glad she was that we had been able to keep her in our home. She kept repeating the same things over and over for about 10-15 minutes. Then we got up to leave. As we walked by the hostess station, we said goodbye to the owner of the restaurant. Kate said, “I’m so glad we were able take care of my mother.” She said this as though the owner had been a part of our conversation at the table.

Once in the car, she kept repeating how much I had helped her, that she could have done it herself but it was easier because of me. As in all conversations, she did not mention any specifics because she can’t remember, but she retains a strong feeling for her mother, the care she got in the last years of her life, and how good she feels about that. Even after getting home, she continued the conversation. What struck me most is that her feelings are so strong that she couldn’t let go of the topic. I don’t know anything else that can stick with her for such a long period of time.

I went into the kitchen to get something. When I came back, she was working on her iPad. I sat down to write this post. Twenty minutes later, she closed her iPad and said she was tired and that she can really “do this” (work on her puzzles) better during the day. I suggested we go to the bedroom, and I would find something on YouTube that she might enjoy. She liked that. On the way to the bedroom, she seemed confused. She said she didn’t know how she would get along without me. At first, I thought she was talking again about my support in caring for her mother. As she talked a little more, it was clear that she was talking about my caring for her.  She was depending on me to tell her exactly what she needed to do. I told her I would get her a night gown, and she could get ready for bed. She needed help getting her gown on and wanted me to tell her every step to take to get ready. Several times she repeated how much she needed me. This was one of those times when I experienced both a desire to help her as much as I could while at the same time feeling sad that she was recognizing her dependence. This was not as bad as watching her painful anxiety attacks. This was simply a recognition of her dependence, and I assured her that I would always be here for her. She seemed to be accepting her dependence without any fear but with gratitude. Once again, she said how much she needed me. Then,  just as naturally said, “What’s your name?”

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Everyday Life

At Rotary yesterday, several people asked me how Kate and I are getting along. My answer is very much the same as it has been as long as I can remember. I say “remarkably well.” I believe that is just as true as it was when I adopted that as my standard answer. Recently, I have modified it slightly to say that over the past few months she has declined more significantly than in the past. Depending on the situation and the person I am talking to, I may say something like “She is now having trouble remembering my name as well as her own.” Then I add that we continue to be active and are enjoying ourselves. I think that is a reasonable summary of where we are right now. It just doesn’t fill in the details of what is going on. I try to do that in this blog.

I think yesterday presents a good picture of our daily lives. It was our day for the sitter, and Kate slept later than I would like in order for me to take her to lunch before the sitter arrived. I tried to get her up at 9:30. She seemed very tired, but she was ready for lunch around 10:45. That made it easy for her to have her lunch and get back home. She was neither very cheerful nor grumpy and not very talkative. Shortly after sitting down at our table, she asked my name. I told her. Then she said, “Wait, a minute. Say it again.” I did. She repeated it. Not five minutes later, she asked again. I told her. Over the course of the next few minutes, she asked another two times.

I told her that I would be going to Rotary and that Marilyn would be with her while I was gone. She asked me several times in a row to repeat Marilyn’s name. She wanted to know her first and last name. She was never able to remember it, but she did not express any concern about not being able to remember or the fact that I would be leaving her. Marilyn was already there when we drove up. Kate greeted her cheerfully. We chatted a few minutes. Then I told Kate I was going and would be back later. She asked what she could do. I told her she could stay at home and work on her iPad, talk with Marilyn, or look at some of her photo albums. I also mentioned Panera. That seemed to interest her. When I said goodbye, Kate gave me a dirty look.

When I got home, they were in the family room where Kate was working on her iPad. Marilyn said they did not go to Panera. She mentioned that they looked at the photo book Kate’s brother had made for her and that Kate had also taken a nap. After Marilyn left, I walked over to where Kate was seated. She said, “I’m glad you’re back.” I said, “I’m glad to be back. I like being with you.” She said, “I like being with you.” She placed emphasis on “you” as if to say “and not the sitter.” I said something about Marilyn’s being nice. She said, “She’s all right.” I didn’t pursue the discussion. I think we’ll just have to live with this a while.

The highlight of our day occurred later that evening. I should point out that our time together late in the day until we go to bed seems to be the most consistently good time we have. That may relate to the fact that I am more relaxed. By that time our routine is consistent, and I don’t have to think too much about entertaining her. We have a pleasant dinner. We come back to the house where I usually watch the news while she works on her iPad. Then I put on a DVD of a musical or something similar. Last night, I decided to go to YouTube for some of their musical performances. That turned out to be a real winner. Kate loved it. When I decided it was time for us to call it a night, she said, “It’s been a great day” several times. I also thought we had been well-entertained, but I especially liked seeing Kate’s response. We sampled an assortment of music and performers starting with the video of Kevin Spacey and Billy Joel and “The Piano Man” that I had played for Ellen on Sunday. Then I played about thirty minutes of Andrea Bocelli followed by The Three Tenors (Pavarotti, Domingo, and Carrera).

Kate’s confusion seems to be getting worse. That was expressed in a number of ways yesterday. As we prepared for bed, Kate said, “Where are we exactly right now?” At first, I said Knoxville, but she wanted a more specific answer. I told her we were in our house. She reacted with surprise. She seems to be putting more emphasis on knowing where we are now. She has asked that a long time, but it seems to be more frequent now. I can tell by other things she says that she often thinks we are out of town. At dinner last night, she said, “Are we in Fort Worth?” I mention this as another illustration that she is frequently confused, but it doesn’t keep us from experiencing enjoying life. We’re getting along “remarkably well.”

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The Rest of the Story

Kate got up about 45 minutes after her confusion reported in my previous post. I am especially glad to report that she did not show any of the previous confusion. She didn’t ask my name or who I am. She was a little bit grumpy until we got to lunch. It was one of our days for a sitter, so I left for the Y about thirty minutes after we returned home. When I said goodbye, Kate looked a little disappointed and asked what she could do. I told her she and Mary could go to Panera or stay at home where she could work on her iPad. She said she would like to start by staying at home.

When I returned four hours later, Kate and Mary were in the family room. Kate was sleeping on the sofa. Mary said they had stayed at home the entire time. She said they had talked a little while, and Kate rested off and on. I was disappointed they had not gotten to Panera. I continue to think she feels more comfortable getting out with me than the sitter. I thought Kate would wake up when we were talking, but she didn’t. After I brought in a few things from the grocery, I went over to her. She opened her eyes. I asked if she would like to get up. She said she wanted to rest a little longer. After another thirty minutes, I asked if she would like to get a pizza. She did.

After dinner, I watched the news while she worked on her iPad. Then I played a portion of a DVD of My Fair Lady. She continued working on her iPad but seemed to enjoy the music. She went to bed shortly after 8:30. I was surprised after she had such a good rest during the afternoon.

It is now 9:00. She is still sleeping. We are going to Nashville today to visit our friend, Ellen Seacrest. She is in a memory care facility and has been declining very gradually over the past three years. Her most notable problem is her speech. It has been increasingly difficult to understand her. The last two times we have brought music into our visits. She responds positively to that. I may try that again this afternoon.

This time we are staying over night so that we can have lunch with a longtime friend from West Palm Beach. He is in Nashville for his brother’s 80th birthday celebration tonight. After our lunch, we’ll return to Knoxville. It should be a good weekend.

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Morning Confusion

About fifteen minutes ago, I thought I heard Kate and went to the bedroom to check on her. She was still in bed but awake and saw me as I walked in. She had a puzzled, even a bit fearful, look on her face. I sat down beside her on the bed. She said, “Where am I?” I told her she was in bed in our home. Then she asked, “Who are you?” Sometimes she asks and really means, “What is your name?” This time I sensed that she really didn’t recognize me. I told her my name and that I am her husband. She looked shocked. She said, “I don’t even know who I am?”

I told her I could help her. I told her that she was from Fort Worth and that her parents were Elizabeth and Charles Franklin. This was unlike other situations in which she was confused in that nothing I said seemed to make sense to her or to jog her memory. I continued to talk about family. I mentioned our children and a grandson who is now a student at TCU. The only thing that drew a spark of recognition was the mention of a couple of her aunts and one cousin. Her response seemed like something you might see in a movie when someone with amnesia is told about her life and doesn’t remember it. She didn’t say, but I imagined that Kate was thinking, “What’s wrong with me? I don’t remember any of these things.”

I asked if she wanted to get up and take a shower or to rest a little longer. She chose to rest. I told her I would come back to check on her. She said, “Please do.” Despite the fact that she didn’t know me, she seemed to trust what I was telling her. I believe that is another illustration of the power of her intuitive abilities as opposed to the rational ones she has lost. I am glad about that.

As with other signs along the way, I believe her not knowing any of her loved ones this morning is something that will not be true when she gets up or tomorrow. I do believe, however, that it is a sign of things to come.

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Confusion/Anxiety

I checked on Kate about 9:30. She was still in bed, but awake, and looking a little confused. I walked over to her and ask if she were getting up. She said, “I don’t know.” I could tell by the tone of her voice that she was confused. She seemed a bit calm, but she was similar to other times she has had an anxiety attack. I got into bed with her and asked if I could hold her. She nodded but didn’t say anything. I told her my name, that I was her husband, and would take care of her. I also said, “You are Kate Creighton. You and I have been married 55 years.” Not wanting to overwhelm her, in bits and pieces I also told her the names of her parents, her brother, and our children. I also mentioned our courtship and my working at the funeral home. Nothing clicked. Periodically, she asked my name and hers.

Then I put on some soft music. She said, “I like the music.” She didn’t say anything more and went back to sleep. I got out of the bed and told her that I would be back in a few minutes. I let Kevin know that I was going to be with her a while longer. It is approaching 10:30. She seems to be sleeping soundly. I have turned up the volume on the music. I’ll give her a little more time to sleep. Then I will see if I can gently wake her up.

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Anxiety Attack in the Middle of the Night

About 1:00 this morning, I heard Kate whimpering. She put her arm around me and said, “I need you.” I didn’t ask what was wrong. Although milder than what I have observed before, I recognize the symptoms now. She said, “Who are my parents?” That led to a conversation that continued for about an hour. I told her about her parents, their names, where they were from, how a Michigan girl and a Texas boy met and married. She also asked about our children. I told her a similar story about them and their children. When I finished, sometimes before I finished, she asked again. She didn’t ask, but I also told her who she and I are and about our meeting and our courtship and marriage. The more I told her, the calmer she got. At one point when I reminded her that our courtship had revolved around my work at a funeral home, she laughed. It was also clear that some of what I said jogged her memory. Finally, we both went back to sleep.

I thought that both of us might sleep a little later this morning, but it didn’t happen. I was up at 5:50. That wasn’t much of a surprise. The surprise was that Kate got up early enough to be ready for Panera about 8:00. She is doing fine. I am sure she doesn’t remember her anxiety during the night. That’s the only good thing about her memory loss.

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Our son is observing more signs of Kate’s Alzheimer’s.

It was sometime after Kate’s diagnosis that I learned what it meant to “lose one’s filter.” My own interpretation would be that people, especially those with dementia, fail to consider their audience when expressing themselves and can easily say things that might not otherwise say. I can’t say that this has been a special problem for Kate, but she is definitely more likely to express her honest thoughts now than before Alzheimer’s.

During Kevin’s visit, I have seen new evidence of not filtering what she says. Up until now, it has only been with me that she has expressed her memory problems. Yesterday she did the same in his presence. Twice she asked my name. She also asked, “Where are we?” In the afternoon, we attended a stage production of West Side Story. Before the show, she asked me someone’s name. She immediately forgot it and then asked again. This is the kind of thing about which she once would have been careful not to do in front of someone else.

During the morning, there were other signs of her Alzheimer’s. I had asked Kevin to lock his bathroom door because Kate often uses that one rather than our own. I made sure that he had clean towels and that the bathroom was in order. I had everything ready for Kate to shower in our bathroom. Kevin had breakfast and went back to take a shower. He came back to the kitchen in a few minutes and said that Kate was showering in his bathroom. We waited for her to finish. Then I went to check on the bathroom. I found that she had used both his bath and hand towels plus at least two other towels she had thrown on the floor. I was surprised because she was up so early and that she had had to enter the bathroom from Kevin’s bedroom because he had locked the bathroom door as I had suggested.

At church they served communion by intinction. For those who may be from another tradition, members of the congregation form a line and go to one of several stations where one person holds the bread and another a cup of the wine. I knew Kate would not remember what she should do and asked her to watch me. It was a little too much for her to absorb. I had to coach her quietly, and it worked out fine. It just took us longer than everyone else. I am sure the people behind us wondered about her. I am also sure that some of those are aware of her Alzheimer’s and recognized the problem. That was one of the few times she has done something in public that might cause people to suspect. That is remarkable given how long it has been since her diagnosis. She continues to get along well in public situations. That is a major factor in our ability to continue so much social activity, another thing for which I am 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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A Surreal Conversation

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

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

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

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

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

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

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Yesterday Morning Conversation at the Residence Inn, Raleigh, NC

KATE:  Are you my father?

RICHARD:  No.

KATE:  Who is my father?

RICHARD:  Charles Franklin

KATE:  He’s nice.

RICHARD:  Very nice.

KATE:  Does he have children?

RICHARD:  Yes.

KATE:  Who are they?

RICHARD:  Katherine (Kate) Franklin Creighton

KATE:   She’s nice.

RICHARD.  Very.

KATE:  Who’s my father?

RICHARD:  Charles Franklin, and who would that make me?

KATE:  (No answer.)

RICHARD:  I’m your husband.

KATE:  (with a grimace, but joking) Oh, no.

RICHARD:  Yes, for 55 years.

KATE:  That can’t be.