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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Yesterday’s Lunch-Time Conversation

At lunch yesterday, Kate asked my name and hers. I told her and then mentioned that we were married and have two children. Thinking that she might envision our children as little, I said, “They’re not really children now. Our daughter is fifty.” She was surprised and asked, “How old am I?” I told her we were both 78, and I would soon be 79. She said, “Well, you look it?” I said, “You think I look old?” She pointed at the hairline above my forehead and tried to say, “Look how your hair is receding.” She just couldn’t figure out how to say it.

Then she mentioned my glasses and asked if I always have to wear them. I said, “Only when I want to see you.” Then I told her I was getting new ones. She said, “Are they going to be bigger?” I said “The better to see you with, my dear.” She recognized the phrase and said, “Where did that come from?” I said, “Little Red Riding Hood” and recounted the portion of the story of the wolf in bed dressed up like Grandma. As I was telling it, I mentioned that the wolf had eaten Grandma. Kate reacted with horror and, rather loudly. said, “What?” Then I had second thoughts about the wolf’s having eaten her. I pulled out my phone and Googled “Little Red Riding Hood” and brought up the full story. I started reading it aloud to her. When I got to the part about the wolf, I quickly learned that I was right. The wolf really did eat Grandma. When I read that, she reacted exactly as she had before. It was quite noisy in the restaurant, so I don’t think anyone heard her. I didn’t see any need to get out “My Wife Has Alzheimer’s” cards. I continued to read. We were reminded that the wolf also ate Little Red Riding Hood, and the hunter cut open the wolf’s stomach and saved both Grandma and Red Riding Hood.

Kate was quite taken with the story and how gruesome it was. It’s hard for me to remember exactly what we said after that, but I said something about the changes in the way people look at such stories for children these days, that we take a more sanitized approach to them. It was not a conversation of great depth, but we did talk about how children generally accepted the gruesome elements as part of a fairy tail and focused on the entertaining aspects of the stories and their messages of morality. I was really taken by how engaged she was.

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A Note on Conversations

One of the things that caregivers of spouses say they miss most is everyday conversations with their loved ones. I understand that. Even in the early years after Kate’s diagnosis, conversation became more difficult. That’s because so much of our conversation involved specific pieces of information about other family members, friends, events, and other personal experiences we had shared recently and in the past. Because of her memory loss, Kate had less to talk about. One additional problem was how much more slowly she could process what I said. It required my repeating almost everything. I suspect that extra effort may have led to my talking less.

As recently as a year ago, I would have thought we might not have conversations at all. The truth is that we spent a lot of our time together in silence. Since then Kate has talked considerably more than she did before. That is closely linked to the time she stopped taking Trazadone. So many changes take place over the course of this disease, I can’t be sure that the change in her medication is responsible for her talking more. It does remain a possibility. I can say that her talking more has significantly changed the quality of our lives, and I am grateful for that.

There is another possible explanation for the increase in her talking. It was shortly after eliminating Trazadone that I read The Dementia Handbook in which the author, Judy Cornish, presents her ideas about rational and intuitive thought processes. She argues that caregivers need to focus on what people with dementia can do (things that involve intuitive abilities) rather than worrying about what they can’t do (things that involve their rational abilities). If you are a regular follower of this blog, you are well aware this has had a big impact on the way I approach caregiving. It helped me understand why Kate and I have gotten along so well. We had followed her advice without even knowing about it.

Once I became aware of her ideas, I began to apply them with greater intentionality. Now, I look at almost everything she and I do with a conscious effort to pick up on her intuitive abilities. As many people say, I try to “live in her world” not mine. What that means for conversation is that I support Kate’s ability to talk about feelings as opposed to facts. This narrows the range of things we talk about, but I find it rewarding to be able to converse with her again. I have every reason to believe that she is enjoying herself more because she is playing a more active role in our conversations.

So what do we talk about? Well, the kinds of things I have reported previously. They fall into several categories. She has strong feelings of respect and admiration for her parents and her extended family. She talks more about her mother than anyone else. She also has feelings of gratitude about her life with her family growing up and her life with me. She has feelings about others who have been less fortunate than she has been. She is kind-hearted, something that seems to have increased since Alzheimer’s entered our lives. This leads her to say more good things about people she encounters, friends and strangers alike. Our conversations are like a litany of expressions of these feelings, and they occur over and over again.

As I reflect on what I have said, I believe that almost all of the special moments we share involve these kinds of conversations. I like seeing her happy, and she is very happy when she expresses her feelings on these topics. That is why we have so many good days. The feelings she has are strong feelings. They endure. It makes me hopeful that we will be able to continue our conversations for a good while longer.

I suspect that those who haven’t spent time with someone with dementia might think it strange or boring to engage in conversations like this. I look at it the way most of us do when talking with young children. Parents and grandparents normally love to enter the world of a child. I feel the same way about entering Kate’s world. Thus far, it doesn’t involve a lot of “make believe.” Almost all of our conversations relate to real feelings about real people and experiences. More importantly, I share Kate’s feelings, and I believe the expression of these particular feelings are healthy, even therapeutic, for us. They maintain our focus on all the positive things in our lives and not the negative and help turn what is ordinary into something special. That is one reason I say we have so many good days.

Yesterday was another one. Her memory wasn’t much better than usual. The key was her engaging in conversation with me. We had a very simple lunch at Eggs Up. She had a chicken sandwich, and I had a Greek omelet, but it wasn’t the food or the ambiance that made it special. It was the simple pleasure of a husband and wife talking about little things that mean a lot to us.

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A Rocky Start, But a Grand Finish

When I went in to wake Kate yesterday, I wasn’t sure what kind of day it would be. She opened her eyes as I approached the bed and gave me a very warm smile. It looked like a time when she knew me. I said good morning and told her I loved her. Then I said, “I hate to get you up. You look so comfortable.” Her face turned to sadness, and she said, “This isn’t easy.” I didn’t know what she meant and asked what was wrong. She hesitated and said, “It’s hard to put in words.” I encouraged her to help me understand. Then I said, “I want to help you.” She said, “What can you do?” I said, “I can be your friend and comfort you.” She said, “I like that,” but she didn’t say anything more. I let it go. I suggested she get up and take a shower. She accepted the suggestion and seemed all right for the balance of the day.

She periodically has these moments of worry or anxiety. When she says things like “This isn’t easy,” I can only wonder if she is talking about her Alzheimer’s. It always sounds like it, but I can’t be sure. I am confident that she no longer knows she has the disease; however, I know she recognizes her memory is gone. She sometimes expresses concern about it. More frequently, she says, “Don’t tell me more. I won’t remember it.” Sometimes she stops working her puzzles when she knows she is not thinking clearly. She says she is tired. Yesterday she had a similar experience with her “Big Sister” album. She can only process so much information. These moments are the hardest ones for me.

I am often amazed at how quickly she can forget. At lunch, she said, “What is your full name?” I said, “Richard Lee Creighton.” She said it and then tried to say it again and couldn’t. She asked me to say it again slowly. After I did, she said, “Now let me say it.” She said it twice, took a slight pause and said, “What is it again?” She had forgotten again in a split second. It’s like turning a light switch on and off.

I don’t know if she knew me as her husband earlier that morning, but I know she did when we returned home after getting haircuts. She wanted something to drink. I told her we had apple juice and water. She eagerly said, “Can I have apple juice?” I told her she could and added, “I only let my best girl friends have apple juice.” She quickly said, “I better be your only girlfriend. We’re married you know.” A quick response like this is not uncommon. I was playing a CD of A Chorus Line. I know that she enjoys the music, but I was surprised at her laughter at the lyrics of one of the songs. Apart from that I had no sense of her listening to the lyrics. I thought it was just the music she paid attention to. There are also moments when she does something that I don’t like. She will say, “I know that bothers you.” Then I say something like, “No, that’s just fine.” She follows that with “I know you’re just trying to be nice.” She is still insightful.

The highlight of the day for both of us was our weekly dinner at Bonefish Grill. As the host was showing us to our table, we passed someone I hadn’t seen in several years. He and my dad were good friends who met in a seniors’ writing class. Dad was 26 years his senior and he (like many others) took an interest in the fact that Dad seemed so much younger than his years. He introduced us to his lady friend and told us that she was moving from New York City to live with him. We chatted a few minutes. Then they invited us to join them. We accepted their invitation and had an interesting time catching up and learning about his new friend. They had been college sweethearts at the University of Illinois in the late 50s and early 60s. They had lost touch since college, and each had married other people. Their spouses had died, and he looked her up and found her. That was several months ago. Kate and I have traveled to New York quite a few times. That and the warmth of the couple enabled her to feel comfortable in participating in the conversation. We had a great evening together and talked about our getting together again when she makes her move in March. At one point while the two women were talking, I had an opportunity to ask my friend if I had told him about Kate’s Alzheimer’s. He said I had and told me that his friend is facing the same thing. It’s just one more reminder of how common this disease is. I plan to stay in touch with him.

It was a week ago yesterday that Kate had her cataract surgery. It is clearer to me that she is able to see more easily now. Her vision is far from perfect, but now I am reasonably sure it is the Alzheimer’s and not her actual vision that is the problem. Yesterday she picked up her “Big Sister” album. The cover photo had caught her as eye as she walked by it in the family room. She thought the picture of her brother was our son, but that is definitely related to her Alzheimer’s. As she leafed through the pages, she tried to read the text. In the past, she has just looked at the pictures. I feel good about our going ahead with her surgery. I am sure it will continue to have a payoff even as she declines further. Our son and his family are coming for a visit during their spring break. Her improved vision should enhance her experience with them. It is difficult enough to have lost memory, but to lose her ability to see could have made a major difference in her quality of life.