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Dementia and Anticipation

Our son Kevin and his family are coming for a visit tomorrow. Kevin comes about three times a year, but this will be the first time the rest of his family has been here in five years. That and the fact that our lives could be very different the next time they are here makes this one special.

Since I learned about their visit, I have periodically told Kate they would be with us. She is always happy to learn they are coming, but her memory doesn’t allow her to retain it. For the first time, I have been more mindful that dementia doesn’t just remove the past from one’s memory. It also prevents the joy of anticipating the future.

I don’t think I am alone in failing to think about this loss. I’ve read a lot of books by caregivers and people with dementia. I’ve also been in touch with a large number of others via social media, especially Twitter and Facebook. I’ve heard many stories about forgetting people, important events, and the difficulty with conversation because it depends so much on memory. They all deal with the past. I don’t recall any that dealt with the loss of the future.

Everyone derives pleasure from anticipation. The first thing that comes to my mind is my father’s excitement as he approached his 100th birthday. He started talking about it and making preparations as soon as his 99th birthday party was over. Our lives are filled with anticipation of things, big and small. – the birth of a child, a teenager’s getting a driver’s license, college graduations, weddings, reunions, vacations, anniversaries, weekends, starting a new job, moving to a new home, many different sources entertainment (concerts by a favorite singer or group, a popular Broadway play, the latest Star Wars movie), and visits with family and friends.

Looking back, I can’t recall when Kate lost this ability. I know it’s been a long time. I regret that she hasn’t been able to experience the joy of knowing she will see her grandchildren tomorrow or other special moments like our being at Casa Bella for music nights. I am glad, however, that she is still able to experience things in the moment. Those have been very important to us. In fact, they have made the difference in how I feel about the way things are going.

The ability to anticipate the future does not always bring pleasure. The only good thing about knowing Kate’s future, and that has been very important, is that it has caused us to make the very best of our time together. I am glad she is unable to anticipate or imagine what her life will be like in the days ahead. That’s something I don’t like to think about, but it’s hard to escape.

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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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“This is not my best day.”

Kate was up a little earlier yesterday. That gave us time to spend an hour at Panera before leaving for lunch at Andriana’s. Other than the time she got up, Kate seemed pretty much the way she usually is, perhaps a little less groggy. After we took our seats at Panera, I discovered something that established a pattern for the rest of the day. Here’s an excerpt of our conversation.

Kate:              “What’s my name?

Richard:        “Katherine Franklin Creighton.”

Kate:              (Looks puzzled) “Creighton? Where did I get that?”

Richard:        “From me.”

Kate:              “Are you my father?”

Richard:        “No.”

Kate:              “Who is my father?”

Richard:        “Charles Franklin.”

Kate:              “Charles Franklin. Who is he?”

Richard:        “He’s your father.”

Kate:              “Is he married?”

Richard:        “Yes. He married Virginia Franklin.”

Kate:              “Wait. Tell me that again.

Richard:        Your parents are Virginia and Charles Franklin.”

Kate:              “Do they have any children besides me?”

Richard:        “Yes. You have a brother.”

Kate:              “What’s his name?

Richard:        “Ken Franklin.”

Kate:              (Now on overload) “Stop. You’ll have to tell me again, but later.”

In some ways this conversation was no different than others we have all the time. What struck me about this one was that nothing I said appeared to spark the least sign of recognition. Normally, upon hearing her father’s name, she might say something like “He was a nice man.” In this conversation she was always searching for something that sounded familiar and not finding anything. She just kept asking questions until she couldn’t process any more.

From Panera we went directly to lunch at Andriana’s. She continued to have memory problems. The big surprise was the first time (of many) that she pointed to the mug shot of Frank Sinatra and asked me who he was. I fully expected her to say, “I don’t like him.” She has been saying that or some variation the past few years we have eaten there. This time she didn’t say anything. It was about the third time she asked that she said, “Is he a nice guy?” I tried to get around this by saying that he was very popular. She pushed a little harder, and I told her that his ex-wives and girl friends might not think so. She didn’t pick up on that. Subsequently, she just asked his name, and I told her without her expressing any evaluation. That is a big change from the past.

Before we got our food, she asked about her name and mine. That led to asking about our relationship. When I told her I was her husband, she was surprised. She couldn’t understand how that could be, but she did believe me. It was one of those times when she was glad to know we were married. Despite her confusion, we had a very nice lunch and conversation.

As soon as we got home, she wanted to take a nap. She rested about an hour. Then she came to the family room and started work on her iPad. It wasn’t long before she saw the “Big Sister” album on the coffee table. She picked it up and started to go through it. I was seated across from her with my laptop. She spent about twenty minutes before asking if I could help her. I took a seat beside her on the sofa. She asked me to tell her all the names of the people in the photos. She didn’t mean on a single page or several pages. She meant all the people in all the photos in the book. Most of them are of her, her brother, her mother and father, and occasionally other extended family members. She never appeared to recognize them from one photo to another. Each time I said, “This is your Daddy” she said, “What’s his name?” The same was true for her mother. Frequently, one photo was beside the other. I still needed to tell her their names. We hadn’t gone through more than four or five pages before her brain was on overload. That’s when she said, “I think we should stop. This is not my best day.” Once again, I was struck by how well she understood that she was not having a good day. I should add that she didn’t display any sense of frustration, confusion, or anxiety. She simply recognized her brain was not working as well as it should. She was right.

I suggested we leave for dinner. She said, “Maybe that would help.” She sometimes says the same thing before taking a nap. On the way to the restaurant, she asked, “Are we in Texas?” I told her we were in Tennessee. She said, “Where is TCU?” I said, “In Texas.” She said, “I know that, but where is it around here?” She hadn’t remembered I had just told her we were in Tennessee.

We had a nice time at dinner. We didn’t talk a lot, but we did converse off and on throughout the meal. She had salmon and talked about how good it was. When she had almost finished, she said she was getting full and wanted to know if I wanted the rest. I took a small piece, and she said, “It’s all right but not really that good.” This change in evaluations is not unusual. This happens frequently and makes it difficult to know if she really likes or dislikes things.

When we stood up to leave the restaurant, she said, “I want you to know I’ve enjoyed being with you. You’re a nice guy.” It sounded like I was her boyfriend, and she was about to dump me. I said, “Thank you, I enjoy being with you too.” In the car I mentioned something about our son and his family’s being in town next weekend. She said, “What do you mean our son?” I explained that we are married. She gave one of her most common responses, “How did that happen?” I told her and said, “Are you unhappy about that?” She said, “No, I’m glad. You’re a nice guy.”

Back at the house she picked up her iPad and worked puzzles for the balance of the evening. That is not to say it was easy. She ran into problems working puzzles all day. At one point last night, she closed the iPad and put it down. I could tell she was a bit frustrated and asked if she would like to look at one of her photo albums. She said she would. I brought her the “Big Sister” Album. She expressed only mild interest in the cover photo that she loves so much. In a few minutes, she said, “What do I do now?” She had never opened the album. I went over to her and opened to the first page of photos. She didn’t express much interest. I couldn’t believe it. I told her who the people were, but that didn’t make any difference in her response. She said, “What do I do now?” I told her she should just look at the pictures. I started to step away when I noticed that she was pressing a photo. She was treating the album as though it was her iPad with jigsaw puzzles. She thought when she pressed a photo, it would scatter the pieces so that she could put them back together. She was confused when nothing happened. I told her they weren’t puzzles but pictures. She was disappointed and said, “Then what do I do with it (the album)?” I told her she could just look at the pictures and enjoy seeing her and her family. She must have had it so deeply imprinted on her mind that it was an iPad with puzzles that she couldn’t relate to it as a photo album. I said, “It sounds like you would rather work puzzles now.” She nodded. I picked up her iPad and gave it to her.

While she was working on her iPad, I played a variety of YouTube videos starting with Tony Bennett and Diana Krall. She expressed only modest interest until I pulled up a Julie Andrews concert. She enjoyed that so much that she put her iPad down and watched. That led automatically to a portion of a BBC PROMS concert from 2010. It featured the music of Rogers and Hammerstein. She was fully engaged. Once again, music made a difference.

She was so engaged that she didn’t want to go to bed. She finally did and slept until 1:45 this morning. She sat up in bed. I asked if she wanted to go to the bathroom. She said yes and asked, “Should I go to my bathroom?” and pointed to our bathroom. She seemed rather alert and got up on her own and walked to the bathroom. I was afraid I might go back to sleep before she returned to bed, so I got up. After using the toilet, she spent about ten minutes brushing her teeth and cleaning her face.

I walked her back to the bedroom. As she was getting into bed, she said, “Well, we did it. <pause> Once again.” I didn’t ask what she was talking about. I just agreed that we had done it again. Once we were in bed, she laughed and said, “If we told our friends about this, they wouldn’t believe it. <pause> I almost don’t believe it myself.” She repeated this several times before we went to sleep. She is still sleeping. I wish I knew what she was talking about.

Given all these things, how do I assess the day? Clearly her memory was worse than any other day I can recall. In that respect, it was a bad day. To make matters worse, I know that this is part of a transition to even greater memory loss. I don’t like that. For the most part, Kate’s decline has been very gradual. The most striking changes have been since last spring. I know from others that people with dementia sometimes have sudden changes. Should I expect to see more of this in the next few days? Weeks?

On the other hand, she was happy all day except for a little frustration with her puzzles last night. We had a good time together. For that reason, I think of it as a good day. I really mean that. It reminds me of a professional and Facebook friend whose child has Down’s Syndrome. I know she is troubled by her daughter’s diagnosis and wishes she weren’t disabled in this way; however, she relates to her daughter as she would do with a normal child and enjoys her immensely. It’s much the same with Kate and me. Having Alzheimer’s is the worst thing that has ever happened in either of our lives. I find it especially difficult to watch her lose more and more of her abilities, but I try to look on the positive side (what she can do and what we can do together) and be grateful for those special moments we experience together.

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A Thought about Dementia and Learning

I doubt that I am the only caregiver who frequently tries to teach something to his love one. One of the things caregivers are told is to accept the fact that people with dementia lose their rational abilities. That makes it difficult to remember names, facts, and procedures. That’s hard for caregivers to get that through our heads. Ultimately, I suspect that most of us do give up trying, but that can take a while. I think I am there now; however, there are some kind of situations in which I can’t resist. One of those involves Kate and her puzzles.

She has been working jigsaw puzzles on her iPad as much as six to eight hours a day for several years. In the past few months she has begun to have trouble. Sometimes she forgets what to do after finishing one puzzle or to begin a new one. Sometimes she looks at the scattered puzzle pieces and can’t remember what to do with them. When this happens, she asks for my help. Occasionally, she wants me to put the pieces in place for her. Most often, she wants me to solve the problem for her. That usually means getting her out of the store to buy more puzzles or to bring up the next one. Sometimes she wants help completing a puzzle. When this happens, I find myself giving her instructions. For example, I suggest that she locate the pieces that go along each border. That is difficult for her. To help I tell her to look for the pieces that have flat sides. When I do this, I am trying to teach her. So far, I have had zero success. This makes me feel that she can’t learn, but I was wrong. Here’s how I discovered that.

I’ve been putting drops in Kate’s eyes for the past three weeks. The first week or so Kate was frightened by my doing this. She frequently closed her eyes right before a drop went in her eye. After a successful drop, she usually said, “That wasn’t bad.” Other than those words, she had virtually no response to the actual drops. It was the anticipation that troubled her. I was beginning to dread giving her drops another few weeks when she stopped being afraid. Now when I tell her it’s time for her eye drops she isn’t afraid at all. She has obviously learned that it is nothing to be afraid of.

This does not appear to be tapping into her rational thought processes but her intuitive ones. I say that because she almost always forgets that she takes drops. When I tell her it’s time for her drops, she either asks why or puts our her hand for me to place a pill in it. She still doesn’t remember that she has had the surgery, and I have told her almost every time I have given her drops. This confirms the fact that she can’t learn what requires rational thought or ability, but she can learn things that depend on her intuitive thought or ability.

As I reflect a little more, I believe those who work with larger numbers of residents in skilled nursing and memory care facilities could tell many stories that illustrate this kind of learning. Having spent a good amount of time with my dad during his last 3 ½ years in a skilled nursing facility, I am well aware that there are many routines in places like that. There are regular eating times, times for activities, ice cream treats, and meds. Most residents fall into those routines quite easily.

I hadn’t really thought much about this before. Recognizing it strengthens my belief in the value of music and photo albums for Kate. It makes me think even more about the power of our relationship. I am only now beginning to fully appreciate what we have created together. I’ll give an example of that in another post.

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A Day of Rest

Normally, I have sitters for Kate Monday, Wednesday, and Friday afternoons. Yesterday was a rare exception. I had an early luncheon meeting across town and arranged for our Monday sitter, Cindy, to stay with Kate from 10:00 to 2:00. I knew when I made the arrangements that Kate might be sleeping when I left, but I hoped she might at least be ready to get up. As it turned out, she was not.

When Cindy arrived, I took her into our bedroom and told Kate that she would be there to help her with anything she needed. I pointed out Kate’s clothes to Cindy and started to leave. She asked if she should try to get Kate up. I told her that she had been up very early yesterday but that she should try to get her up at 11:30.

After my luncheon at 1:00, I checked the video cam and noticed that Kate was not up. When I arrived home, I discovered that Cindy had tried to interest her in getting up at 11:30 and again at 1:00. Neither time did Kate want to get up.

When I went to the bedroom, I found that Kate was awake but still in bed. She was quite relaxed and smiled as I came in the room. I walked over to the bed and asked if she would like to get up. At first, she said she didn’t. Then I told her it was getting late and I thought it would be good for her to get up and get a shower. She agreed and got up without a problem.

I was disappointed that she hadn’t gotten up for Cindy. My suspicion is that she didn’t remember her and, thus, did not feel comfortable getting up for her. I think she felt secure staying in bed the whole four hours. Knowing her memory is so short, I know that she couldn’t have remembered that Cindy was there or that I was gone. I imagine it was one of those moments of confusion for her, and she didn’t know what to do except stay right where she was.

She seemed to recognize me from the time I walked in. She didn’t ask my name or how we were related at all. When she was dressed, she was ready to eat. That was no surprise. By then, it was 3:00. I took her to Panera for a muffin and half a sandwich. She was very cheerful and talkative when we entered the restaurant. I don’t remember doing this before, but we both walked to the counter where I placed our order. I said hello to the young woman employee. Kate said, “My name is Kate, and this is my uncle.” I said, “Are you sure?” She said, “You are, aren’t you?” I told her I was her husband. Then she said, “If you say so.” She left to get her drink. Then I asked the woman who is a new staff member if she knew that Kate has Alzheimer’s. She didn’t. I didn’t have to go any further she understood the situation.

I was eager to see if she had picked out a table and, if so, which one she chose. She never remembers the two tables where we typically sit. When I reached her, she was standing at a table where a young man was working on his laptop. She was talking with him. When she saw me, she said to the man, “This is my uncle.” I didn’t contradict her. I began to open the puzzle app on her iPad and place on the table across from the man. She continued talking with him. He was trying to ignore her. He kept on working. We left after forty minutes for her to get her hair shampooed. This was the first time I have taken her just for a shampoo. I did so because I don’t think she is shampooing regularly at home. As we were walking out, she stopped to talk to a young boy about seven or eight who was seated across the table from a man I believe was his tutor. The boy’s backpack was sitting on a chair between the two of them. Kate thought the backpack was a baby and asked the boy if that was his brother. They quickly cleared up the mistake. The man was black and the boy white. Then Kate looked at the man and said, “You must be his mother.” Of course, the man said he wasn’t. Before we walked away, I pulled out one of “My wife has Alzheimer’s” cards and slipped to him.

From there we went to the hair salon. When Kate was finished, she walked to the front with her stylist and said, “She’s really good.” Then she looked at the stylist and said, “What’s your name?” She told her, Kate repeated it. Then she asked her again. After that she said, “You may have to tell me again.” The stylist has long known about Kate’s Alzheimer’s and handled the situation perfectly.

We had a nice dinner experience at Casa Bella. This wasn’t a music night for us. We sat in the front section where we have eaten for years until they started having music nights on Thursdays. We’ve been eating there for almost forty-seven years, but she forgot the name of the restaurant sometime during the past year. Last night she probably asked the “name of this place” seven or eight times.

She talked a good bit about feeling glad to be with me. She specifically mentioned that she wouldn’t know how to get home. I discovered in the process that she was interested in knowing the name of the restaurant in case she were to get lost. She would be able to tell someone where she had been.

Soon after we had ordered, she wanted to go to the restroom. I took her and waited outside the door for her. I told her not to lock the door that I would make sure no one else went in. When we returned to the table, she thanked me and said she would never have been able to find her way back. It’s only when she says things like this that I get a grasp of the fact that she still recognizes her own disabilities.

Near the end of our meal, a couple we know from Broadway nights were seated in the booth next to us. We had a nice conversation with them for a few minutes. It was another of those brief social encounters that enrich so many of our meal times.

Off and on throughout dinner, Kate said she was tired and wanted to get to bed early. She often says this but doesn’t follow through when we get home. As usual, she worked on her iPad for a while but was tired and called it a day shortly after 8:00. That is at least an hour earlier than normal. She was still awake when I got in bed at 9:45. It was a very short day for her but a happy one.

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A Very Good Day

My video cam continues to help me monitor Kate in the morning. About 7:30 yesterday, I saw that she was about to get up and went to the bedroom. When she saw me, she said, “Do I have a meeting I have to go to?” I told her she didn’t. She asked if I was sure. I assured her she had no obligations and could rest a little longer. I took her to the bathroom and then back to bed. She asked again if she had a meeting. She must have had a dream that she did. She was glad to be able to return to bed.

About 9:30, I saw that she was getting up again. When I got to the bedroom, she said she wanted “to get out of here.” I helped her up and to the bathroom and turned on the shower. Before getting in the shower, she said, “You’re really nice to do this.” I said, “I’m glad to help you whenever I can. I love you.” She hadn’t said anything that would indicate that she remembered my name or that I am her husband, but I felt that she did.

As she was getting dressed, she joked with me about something. I said, “You have quite a sense of humor.” She said, “So do you.” I said, “I guess that’s why we’ve gotten along so well.” Then I asked if she knew how long we had been together. She guessed fifty years. I told her we had been married for fifty-five years. Then I added “Fifty-five great years.” She didn’t express any surprise and said that we had done a lot of great things. Before walking out of the bedroom, she saw a wedding photo of our daughter and asked who she was. I told her that was our daughter. Again, she didn’t act surprised.

We had a little time before a lunch and dropped by Panera for a muffin. In the car she said, “What is my name?” I told her. Then she asked my name. After I told her, I asked, “Do you know how we’re related?” She said she didn’t. I told her we were married. She said, “When did that happen?” I told her it was fifty-five years ago. She found that hard to believe. I told her we had a daughter who is fifty and a son who is forty-eight. She didn’t respond with any alarm or elation. After we were seated, she asked me to tell her my name. I gave her my name and told her I was her husband.She expressed surprise. I said, “Does that bother you?” She said, “No, I’m glad. You’re a nice guy.”

From Panera, we went to our church where the seniors were having a Mardi Gras luncheon. The entertainment was a saxophone player playing music closely identified with New Orleans. She enjoyed it. About mid-way in the program, she tapped me on my shoulder. I leaned toward her so that she could whisper in my ear. She said, “What’s your name?” A few minutes later, she said. “Where in the world are we?” When I told her we were at our church, she gave me a strange look. I quickly realized she didn’t think it looked much like a church since we were in our fellowship hall that used to double as a gym.

We both enjoyed seeing people we know but hadn’t seen in a while. The seniors meet once a month, but I somehow forget to make reservations. This time someone called to remind me. The highlight for Kate came when the saxophonist played some Dixieland music, and his wife led a conga line around the room. Only fifteen or so participated. I was one of them. Kate got a real kick out of seeing me dance around the room.

Later, as we walked to our car that was parked in front of the sanctuary, she asked, “What’s the name of this church?” I told her. She had no recognition. Then I told her this was where she had been the volunteer church librarian. At first, she didn’t remember. Then I told her what a good job she had done there. That jogged her memory, and she mentioned a few things she had done in that position. On the way home, she said, “I love you.” She followed that by asking my name. She was remarkably at ease during each of these moments her memory failed her.

It had been over a month since her last pedicure. I was beginning to feel a little guilty so I made an appointment shortly after getting home. It was no surprise that she didn’t remember anything about the procedures involved. I helped her into her chair. She commented on the water. I left her in the hands of the attendant but waited in an area where I could watch her. She hadn’t been seated long before I heard her say, “What’s the name of this place?” The woman attending her answered. Then she asked what kind of place it was. As I watched, it looked like something she must have enjoyed. When I asked her afterwards if she had enjoyed it, she shrugged. I suspect by that time she didn’t remember even though we were just outside the door to the salon.

We went back home where she rested in the family room for an hour. Then she picked up a photo album of her father’s family. She had not looked at it recently and was taken with it. While she had to ask me the names of all the people multiple times, I felt the major problem was not her vision but the Alzheimer’s impact on here sight. She seemed to have a keen recollection of most of her family except some of those who had moved away from the Fort Worth area.

The best part of the day occurred when a childhood friend from Fort Worth called. Kate was quite alert. A few minutes before the call I told her the friend was calling, but I didn’t expect Kate to remember her. If she didn’t remember, she fooled me. She handled the call with poise. I sat beside her during the call and chimed in from time to time. The biggest surprise was when she remembered the name of another childhood friend.

In addition to being so “with it,” she was unusually expressive in her appreciation to me. That was true even for things I had nothing to do with. One of those involved the photo album of her family. She gave me credit for everything I had done. I told her I hadn’t done it, but she said I had assisted in getting it done. Actually, I had nothing to do with it. It was put together entirely by her brother Ken.

The rest of the day went smoothly. She was in a good mood all day. Except for the various questions she asked about names and places, no one would have ever suspected she is into her ninth year of Alzheimer’s and what I estimate to be the middle of Stage 6 of the Seven-Stage Model of the Progression of Alzheimer’s. How lucky we are.

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“Are you my Daddy?”

After being up at 1:30 and again at 7:45 yesterday, Kate got up for good before 9:30. She seemed rested and didn’t show the same degree of confusion she had shown earlier. She still didn’t recognize me as her husband but wasn’t disturbed by it. She was very much like she was the previous night when she thought of me as a good friend.

We made it to Panera for a muffin just after 10:00. Soon after getting into the car, she asked if I were her daddy. I told her I would be happy to be her daddy. She frowned and said, “So you’re not gonna tell me.” I said, “Do you think of me as your daddy?” She said she did. I said, “Well, I am.” We had a similar exchange at Panera. When I told her I would be happy to be her daddy, she said, “You’re not my daddy.”

A little later at lunch, she said, “What is your real name?” I told her and she said, “You could be my adopted daddy.” I said, “I like that.” She asked my name again. Then she told me that she could introduce me to our server as her adopted daddy. That didn’t happen. By the time the server came back she had forgotten altogether. My interpretation is that she was accepting that I was not her daddy, but she didn’t think of me as her husband. To her it must have seemed appropriate to think of me as someone close enough to be her daddy, hence the idea of her adopted daddy. That may be a nice transition from being her husband. I could live happily with that.

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Dinner Conversation

Several times I’ve mentioned that Kate sometimes thinks I am her daddy. Usually, she asks, “Are you my daddy?” when she doesn’t remember who I am. On other occasions, she says something like, “Okay, Daddy. Whatever you say.” These words are less clear in their meaning. It could mean that she was teasing me when she thinks I am treating her like a child. Often I am left in doubt as to what she means.

Last night at dinner we had a conversation that illustrates how she can move seamlessly between understanding and not understanding. I can’t remember the exact words, but here’s my reconstruction of our conversation.

It started when she asked where we were. I told her we were in Knoxville where we had lived for forty-seven years. She said, “And I’ve never had a boyfriend.” I said, “I could be your boyfriend.” She said, “You’re my daddy.” Then she paused a moment to think and said, “I would say that any girl would be happy to have you as her boyfriend.” I thanked her for the compliment. Neither of us said anything for a minute or two. Then she asked asked where we were. Once again, I told her we were in Knoxville. This time I added, “And this is where our two children grew up. They were almost 3 and 1 when we moved here.” Sometimes she expresses surprise. Not this time. She just said, “What are their names?” From this point on we continued the conversation without any sign of her thinking I was her daddy. To me it was a good example of how easily her perceptions seemed to drift from one “reality” to another in such a short span of time.

A related example occurred when we had finished our meal. I asked if she wanted dessert. She said she was full and just couldn’t. I told her I felt the same way. Moments later the server approached the table and asked if we were ready for dessert. Kate said, “What do you have?” I knew then she had made a different decision, and, of course, I enjoyed the fudge brownie and ice cream with her. We’re living in the moment and loving it.

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Grasping to Remember

Kate’s memory has been worse this week. When she got up day before yesterday, her memory was as bad as the two previous days. She repeatedly asked the same questions – “Who are you?” “Who am I?” “Where are we?” She didn’t express any frustration as she asked. She did so quite naturally as though she were asking someone else where they were from.

We talked without ceasing at lunch. That is unusual. It would start with one question and lead to another. For example, I had given her our names and relationship. Then I said something about our children. That led her to ask questions about them, their names, where they live, etc. I mentioned her family, and she asked me to tell her about her mother and father. As I mentioned different pieces of information, that led her to ask further questions. That meant I kept giving her more and more information. Of course, that was overwhelming for her. It was actually a beautiful conversation because she was so interested in knowing about her family. At one point, her eyes were filled with tears as I told her about them.

When we got in the car to return home, she said, “You’re probably going to have to tell me all this again.” She said she would never be able to remember. I told her that would not be a problem, that I would remember for her. I asked if she remembered the nickname she had given me. She didn’t. I told her it was “MM” for “My Memory.” She not only didn’t remember, she didn’t understand what it meant. It took a while for her to understand.

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A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.