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Lunch Conversation

During our lunch yesterday, Kate asked my name and then hers. She picked up the last name we have in common. Then I said, “Now, do you know how we are related?” (That’s something I don’t do very often. I never want to disturb her when she can’t answer, but she almost always engages in these conversations without any concern at all about not remembering.) This time she said, “Tell me.” When I did, she looked startled and said, “Excuse me?” I said, “That’s right. I’m your husband. You look puzzled.” I don’t recall exactly what she said. Here is what she was trying to say. “I was trying to think of the words I wanted to say but couldn’t. They are words I shouldn’t say.” She wasn’t clear, but I believe she was trying to say she was so surprised that she wanted to use profanity but couldn’t remember the words. I said, “Your surprised.” She said, “Don’t you think I should be surprised if we are married and I couldn’t remember?” I said, “Yes.” She said, “See, I’m smart.” I said, “I know you are. You are very perceptive and insightful.” She didn’t care for my translation and said, “I would say I’m smart.”

This was one of those times when she simultaneously shows that her memory is gone along with an intuitive sense about the situation. Her intuitive abilities permit her to see some things while her memory continues to fail.

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Taking Stock of Where We Are

I’ve read that one of the first questions most people ask after hearing their diagnosis is “How long do I have?” That was true for Kate. I think the best answer is “It’s hard to be sure.” Kate’s doctor said, “I’ve had patients who lived for another twelve years, but it can vary a lot.” I’ve heard the same figure other places and also 8-10 years.

I was among those who wanted to know “how long?” However, having learned that we had less time than I expected before her diagnosis, I found it more helpful to focus on the present. Kate and I wanted to make the most of that time. On a continuing basis, I have felt knowledge of the various stages of Alzheimer’s is useful.

There are at least two widely accepted models that identify the symptoms that are characteristic of each stage. One has three stages. The other has seven. If I use the 3-Stage model, I believe Kate is in the latter part of Stage 2. The Alzheimer’s Association says that is the longest stage and can last many years. That seems to fit with Kate’s experience.

I have paid more attention to the 7-Stage model. Perhaps that is because it seems somewhat more precise. I know that’s a bit strange to say in that both models describe general characteristics. Not everyone exhibits exactly the same symptoms. I would say that Kate has been in Stage 6 for more than a year. Her recent changes suggest that she is nearing Stage 7. Here is how WebMD describes the symptoms for these stages.

Stage 6: Severe Decline

As Alzheimer’s progresses, your loved one might recognize faces but forget names. He might also mistake a person for someone else, for instance, thinking his wife is his mother. Delusions might a set in, such as thinking he needs to go to work even though he no longer has a job.

You might need to help him go to the bathroom.

It might be hard to talk, but you can still connect with him through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.

Stage 7: Very Severe Decline

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period.

To get an idea of where Kate fits in these models, I think it is better to consider the kinds of behaviors that are now becoming commonplace. Here are a few things that have occurred in the past few days.

Confusion about Where She is

I don’t think she ever is quite sure of where she is with respect to the city of Knoxville. Increasingly, she doesn’t recognize that she is in her own house. She seems to ask where she is less frequently and assume that she is in Fort Worth. Leaving the restaurant the other night, she asked where her childhood home was located. I told her Fort Worth. She asked if I could drive by her house. I told her we would and planned to drive by one of our former houses in Knoxville. It turned out she forgot rather quickly. I just drove home. She never realized what happened. When we arrived home, we looked around the yard. Then I led her into the house. She asked if we were spending the night. I said yes. She wanted to know if I had everything we would need. I told her we did. She didn’t know it was our house. This is not a new experience. It is just more common now.

Having Milder, But More Frequent Moments of Anxiety

It’s been about ten months since Kate’s first attack of anxiety. It occurs when she seems to be aware that she doesn’t know where she is, who she is, or “what is going on.” Altogether she has had only five or six of them. Three occurred in the past week. One was yesterday morning.

She looked sad and/or slightly frightened when I woke her at 11:00. I asked if I could help her. She nodded. I asked her to tell me what was wrong. She didn’t say anything. She closed her eyes and looked so sad. I said, “I think I am your best friend. I would love for you to tell me what’s troubling you so that I can help.” She started to cry but didn’t. She didn’t say anything. I said, “I wonder if you might feel better if you got up and let me take you to lunch.” She nodded agreement. I proceeded to pull the covers back and help her out of bed. I walked her to the bathroom where she used the toilet and then brushed her teeth. Then we walked back to the bed where she sat down to get ready to dress. She said, “I am so glad you’re here.” I said, “You know that I will always be with you. We’re a team. We have been for almost 56 years. We always will be.” She said, “I know. We just clicked.” I said, “Yes, from our first date.” She again said, “I’m so glad I have you.” Then she said, “What is your name?” I told her, and she asked, “What is my name?”

When she had almost finished dressing, she said, “I’m feeling better now.” I said, “I think it was good for you to get up and dressed.” She said, “Yes, but I think it was also talking with you and knowing that you are always with me.” That was one of the many times that I was fighting back tears. We went on to have a nice day.

Recognizing Our Relationship

My guess is that she can’t remember my name or hers most of the time. About six months ago, I would have said she remembers that I am her husband about half the time. I would say that has dropped to 25% of the time. The good news is that she still responds to me as someone she “knows and trusts.”

Heightened Emotions

As she has lost almost all her rational abilities, her intuitive ones have become much more apparent. Her feelings for the beauty of nature, especially trees, are much more noticeable. I had someone refill the pots on our  patio and front porch with new flowering plants. She loves them. I did the same thing last year and hardly got a reaction.

She has stronger feelings about normal items in our environment and wants to take them with her when we go out. The other night she picked up one of the decorative pillows from our bed and took it to the car with us. When we got in the car, she asked what to do with it. I told her I would put it in the back seat. Last night, she wrapped her nightgown around her arm as though it were an injured arm. She was planning to take it to dinner with us.

There are numerous other examples of her emotional attachment and feelings about things. She has developed a ritual of looking at her ceramic cat and a photo of her father each time we are about to leave the house. On only a few occasions has she recognized him as her father.

She has been sensitive to sudden noises for a long time. Now she is frightened even by noises that are not loud. She is bothered by music in restaurants much more than in the past. It seems like almost anything can frighten her.

Music is even more important. She likes for us to sing together. Yesterday, we went to lunch at Applebee’s. It’s just a short drive from our house. I told her I was going to play some music she would like and turned on “Edelweiss.” It hadn’t finished when we arrived at the restaurant. As we walked to the entrance, I started singing it for her. She joined in. We didn’t get far before we stopped. The fellow serving as host opened the door for us. Once we had ordered, Kate wanted us to sing again. I hesitated for a moment. We were early, and there was no one seated around us. I started singing “Edelweiss.” She sang along, carefully following the words as I sang them. It was another touching moment.

She responds with sadness to the news or any other information that involves people who experience some kind of trauma. At Casa Bella this past Thursday, the woman sitting next to her told us about a fire that occurred in the restaurant years ago. Kate didn’t grasp that this was an old incident. She immediately took the woman’s hand with her own hands. She had such a sad look on her face. It looked like she was about to cry. I explained that this was something in the distant past. Then she was all right.

She also responds with a sad look and tears in her eyes when good things happen. Her response to her Mother’s Day cards is a good example. Another would be her response when I tell her I love her.

The heightened intuitive abilities have also been accompanied by changes in her aesthetic tastes. As we go through the laundry room to our garage, she often stops and looks at the items on the counter and admires the arrangement of things. Sometimes she moves some of them to other places she likes better. At restaurant, she sometimes uses her napkin as a place mat and carefully places her flatware on it.

Feeling More Dependence on Me

She asks me for directions on many things she would not have had to do before. For example, last night she asked me where to put her iPad after she had finished using it. Normally, she would just leave it wherever she was at the time. She has a greater sense of not knowing what is the right thing to do. She sometimes asks if she should take all the pills I put out for her. In restaurant, she sometimes asks me where to put her napkin. Over the past month or two, I have started cutting her meat for her. She likes that and has shown no effort to retain her independence.

At the same time I see her adapting well with the sitters, I also see signs of greater dependence. When we arrived home after lunch yesterday, the sitter was waiting for us. Kate said, “Who is that?” I said, “That’s Mary. This is my day to go to the Y. Mary is the one who will be staying with you while I am gone.” She looked disappointed and said, “How long will you be gone?” I said, “A couple of hours.” It’s nearly four hours that I am gone, but I know that she can’t tell how much time has passed. I think “a couple of hours” sounds better than “four.” When she heard that, she shrugged, and we got out of the car. Mary had gotten out of her car and greeted us. Kate responded like she was a longtime friend. Naturally, I felt good about that.

Once inside, Kate followed me to the bathroom where I was brushing my teeth. While she brushed her teeth, I went to the family room where Mary had taken a seat. Before I could say anything, Kate walked in and with a smile on her face said, “Richard said I could go with him.” I hated to tell her I was leaving, but that was the only thing to do. Fortunately, she accepted without protest though she looked disappointed.

There are two other things I should add. One is that she didn’t have as good a time at Casa Bella the other night. We were seated at a larger table with three other couples. That is just too much for her. At first, she seemed to try to be a part of the conversation. She ultimately sat back quietly. I hope that we will be at our regular table in the future.

The other thing is that she has seemed much more childlike in the past few weeks. That’s a little hard to describe, but it is evident in the way she expresses herself.

The rapidity with which the changes are occurring suggests to me that it won’t be much longer before she will be in the late stages regardless of whether I use the 3-Stage or the 7-Stage model. We have gotten along “remarkably well” during the earlier ones. I am hopeful that will be true as we go forward, but it is the stage everyone wishes would never come. I am no exception.

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A Special Moment to Start the Day

Being Kate’s care partner brings with it the full range of emotional experiences from joy to sadness. As I have said so many times, we have been fortunate to share far more of those at the joyful end of the scale than the other end. Sometimes joy and sadness are intertwined. We had one of those moments a few minutes ago.

I was in the kitchen (my office) when I heard her say, “Hey.” I looked up at the display on my iPad. I didn’t see any sign of her. Then I heard a louder “Hey!” She wasn’t in the bedroom at all. She had gotten up without my seeing her on the video cam. I walked to the back and said, “Where are you?” She said, “I’m here. Where are you?” I walked down the hallway and heard her say, “Here” just before I saw her coming out of the guest room. I said, “I wondered where you were.” She said, “I didn’t know where you were.” I said, “I love you.” She said, “I love you too.” I gave her a hug and said, “Doesn’t it feel good to be with someone you love.” She agreed, and I said, “I hope I am your favorite husband.” She laughed and said, “Who are you?” I told her, and she said, “Who am I?” I said, “Kate Creighton, and you’re my wife.” She said, “I am?”

We started to walk back to the bedroom when I saw pictures of her maternal grandparents. I pointed them out and told her these were special people to her. She asked who they were, and I told her. She was quite interested and wanted to know more about them. I told her they were her mother’s parents. She asked her grandparents names one at a time, and I told her again. Across from those pictures is a photo of the home in which her father grew up. I told her this was an important place for her and explained the significance.

I walked her a little farther and showed her a picture of her father. I said, “This is a very special man in your life. Can you guess you that might be?” She couldn’t. I told her, and she said, “He looks like a good man.” I told her he was. Then showed her a photo of paternal grandfather and her uncle taken with managers of her grandfather’s lumber business. She didn’t recognize them or the photo but was keenly interested.

The next photo was of her mother when she was in her late teens, I believe. It is my favorite picture of her. I told her that she was also someone special in her life. She didn’t know who it was before I told her. It is a photo she likes as well. She said, “She’s pretty.” The last photo was of her father’s mother. Kate had no recollection of her at all. When I explained that she was her grandmother and that she was the first member of the family to attend TCU, she was excited.

It doesn’t seem that long ago that Kate could have walked along this hallway and told the same stories to accompany these pictures. It is sad that her memory is now virtually gone. She can’t remember them at all. At the same time, it was a moment of joy for me to tell her these stories and for her to hear them. It is moments like this that sustain both of as we move into the later stages of our journey.

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More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.

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Understanding What’s Going on in Kate’s Head

You might think that by now I would have a pretty good grasp of what Kate is thinking and feeling. I spend almost all of my time with her. I try to be a careful observer. I’ve read a good bit about others experiences and their insights, but what strikes me most is how little I really understand. I often relate my impressions and my guesses as to why she does what she does. I hope, however, that I never suggest that I have a firm understanding of everything. I don’t. Yesterday morning I had an experience that illustrates how wrong I can be.

Kate got up for the day about 8:15. She was happy and seemed very clear-headed. I didn’t see any sign of grogginess. She called me by name at least twice after getting up. I never asked, but I was confident that it was one of those times when she knew my name and hers and that I am her husband. Except for helping her dress, it seemed like a morning we could have had pre-Alzheimer’s.

On the way to Panera, we talked a little about our marriage. As we drove up to the restaurant, she said, “And what is my name?” I told her and she repeated it. She quickly forgot and asked me again. Then she said, “If someone should ask, how should I introduce him?” I said, “Who?” She said, “Him sitting across from me.” I said, “This is Richard Creighton.” It turns out that’s what she wanted, my name, but she was asking in what she thought was an indirect way. All the while she behaved as though her memory was perfectly normal. She fools me like this on a regular basis. No wonder she can be with other people without their sensing how far along she is or that she has Alzheimer’s at all. How many people with dementia do you suppose we confront during the course of our daily lives without suspecting a thing?

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Ken’s Arrival

Like so many things, especially when it comes to airline travel, Kate’s brother, Ken, and his wife, Virginia, experienced a delay in their arrival yesterday. We were to have had dinner with them last night, but their flight didn’t get here until close to 9:00. I regretted not having that time with them but invited them to drop by our house on the way to their hotel.

They arrived at the house just after 9:30. Kate and I were in the family room when I heard them at them at the door. I got up to greet them. Kate stayed in her chair where she was working a puzzle. Ken and Virginia entered the family room ahead of me and said hello to Kate. They hugged, and she greeted them warmly. Everything seemed perfectly normal. It was a beautiful reconnection with her brother.

We talked about the day’s travel experience and laughed. They were both able to take it in stride. We caught up with their children and grandchildren. We talked a little about our courtship and a letter that her mother had sent to my mother talking about our “friendship.” There were times when Kate was confused and asked for clarification and spoke very little. Otherwise, she was enjoying the conversation along with the rest of us.

After an hour, Ken and Virginia left for their hotel. As soon as they walked out, and I had closed the door, Kate whispered to me, “Who are they, and what are they doing here?” I told her their names. She didn’t recognize them. Then I explained that Ken is her brother, and Virginia is his wife. I was floored that Kate had not realized this. She must have spent the entire time without knowing who they are.

This experience is a good illustration of a couple of things. First, it shows that even someone (me) who knows her condition best makes mistakes in judgment. I know that her memory is gone, but in many ways she still seems very normal to me. That often leads me to expect more of her than I should.

Looking back, I see that I didn’t handle the situation the way I should have. We had been sitting in the family room for over an hour without my reminding her that they were on the way and would be here soon. Of course, she forgot about our earlier conversations about their upcoming visit. I can’t remember exactly what I said when I heard them at the back door. It was probably something like, “They’re here.” That would mean nothing to Kate. In my haste to welcome them, I didn’t even walk ahead and tell Kate, “Your brother Ken and Virginia are here.”

The experience is also an example of how poor Kate’s memory (rational ability) is and how well she is able to handle a social situation through her intuitive abilities. Ken and Virginia are well-informed about Kate’s current decline. I am sure they noticed some changes since their last visit. On the whole, however, my guess is that they didn’t sense just how poor her memory is. I will be eager to get a chance to find out today.

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Confusion Yesterday Morning

Kate woke up around 7:30 yesterday morning to go to the bathroom. She seemed rather alert. I didn’t ask, but she acted as though she knew exactly who I am. I realize, however, that appearances don’t necessarily jibe with reality. She went back to bed and slept until 10:30. This time she was confused.

I asked if she was ready to get up. She said, “I don’t know.” She didn’t look disturbed or frightened. It wasn’t the way she has been when she has had anxiety attacks. I asked if I could help her. She said, “I don’t know.” No matter what I said she said “I don’t know.” Then I suggested that she take a shower and that might help to wake her up. She didn’t want to shower.

I took another tack. I told her she should get dressed, and we could go to the family room where I might be able to show her something that would help. As she was dressing, she asked my name and her own several times. When she was finished, we went to the family room where I picked up the “Big Sister” album. We spent about about twenty minutes looking through it before going to lunch. She didn’t recognize the cover photo of herself with her brother. When we opened to the first page of pictures, she didn’t recognize herself, or her parents. As she has done in the past, she didn’t recognize her father after I identified her mother who was sitting with him. Although she didn’t show any improvement in recognizing her family, she did seem more comfortable than before. Her intuitive abilities were working.

As we drove to lunch, she seemed normal, and I was beginning to think she knew who I was. When we walked from the car to the restaurant, she asked my name. Similar moments like this over the past week suggest that she is close to losing the ability to remember my name and relationship to her. I am not expecting this to happen suddenly, but it is becoming more and more difficult for her to remember my name. I know it will only get worse. I still take satisfaction that she recognizes me as someone she trusts.

Yesterday on Twitter I exchanged several message related to the important of feeling safe among those living with Alzheimer’s. I am also encouraged that she continues to say that she feels safe with me. When this first started occurring, I didn’t know what to make of it. The more I have watched her decline and the more I have read, I have come to realize how frightening it must be not to where one is, who one is with, and “who I am?” I don’t think I would feel safe either.

When we got home, we had about twenty minutes before our sitter, Mary, arrived. Kate wanted to know what she could do. I showed her the three-ring binder with a lot of personal and family information. She was interested. When I left for the Y, she and Mary were seated side by side on the sofa going through the information. I was encouraged.

When I got home Kate was resting on the sofa while Mary sat in a chair across from her. Mary said that she and Kate had spent most of the time looking through the binder and then a couple of the photo books. She said Kate had been resting about an hour.

The rest of the day was uneventful. Kate indicated she was glad I was home and wanted to know “What next?” I told her it was time for dinner. When we returned home, she worked on her iPad until time for bed. She needed my help periodically but never showed any sense of frustration.

She got to bed a little earlier than usual but was still awake when I joined her an hour later. This morning she was up at 8:30 and took a shower. She didn’t show any signs of confusion or grogginess and acted normally toward me. I had her clothes out for her, but she went back to bed where she is resting/sleeping now. We don’t have any special obligations today. I will let her sleep until 11:00 if she doesn’t get up earlier.

The big event of the day actually comes tonight. Kate’s brother, Kevin and his wife, Virginia, are flying in for a short visit. Their flight doesn’t arrive until 7:00 this evening. They are renting a car and will meet us at the restaurant where I have made dinner reservations. Kate has changed a good bit since their visit in the fall, but I am optimistic that it will go well. I will be eager for the two of them to have some time together as they did on their previous visit. We have plenty of photo books to inspire good conversation. I am looking forward to having them with us.

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Our Easter

Since our friend Ellen had her stroke almost four years ago, Easter has been a bit different for us. For years she hosted her church choir for lunch at her house. That is now a thing of the past, and we have replaced that custom by eating at a restaurant. That makes it pretty much the same as other days.

The day started slowly when Kate didn’t want to get up. That is the second time in the past three days. She insisted that I go without her, but I told her I didn’t feel comfortable leaving her. This comes at the same time she is beginning to rest a little more in the afternoon.

We went to lunch at a place that has an Easter buffet. That has become more difficult for her, but I seated her before going to the buffet to get her food. This required two trips as it is a bit cumbersome for me to maneuver two plates around the four or five different serving tables and then back to our own. In addition, it required me to leave Kate while I went to a separate room where the buffet was located. The meal was good, but I don’t think I will do this again. It is much easier to go where there is wait service.

Kate was in a good mood despite her not wanting to get up. That’s one of the good things about memory loss. She quickly forgets moments like this. As we were eating, she said, “What’s your name?” I said, “Richard Creighton.” She repeated it. Then I said “And I’m your husband.” She gave me a dirty look and said, “I know that.” A few minutes later, she asked, “Are  we married?” I said, “Yes.” She said, “I thought so.”

We went home after lunch. Kate said she wanted to rest and remained in bed for almost three hours. By then, it was close to dinner time. As we drove out of the driveway to the restaurant, she said, “I like this place, but I’m ready to go home.” I said, “It’s always nice to be at home.”

As we approached the restaurant, Kate said, “Are you married?” I said, “Are you?” She said, “No.” She said, “Are you?” I said, “Yes. I married a sweet gal named Kate Franklin.” Kate said, “So we are married?” I asked how she felt about that. She said she was fine. I said, “That’s good because we’ve been married a long time.” Since we were close to the restaurant, we didn’t pursue it further.

On the way back, she said, “What can I do when we get home?” For the first time, it struck me that she said “home.” I hadn’t thought about it before, but I usually feel that she doesn’t know where we are or where we are going. I think I am right most of the time, but we do go directly home after eating meals. That must be stored deep within her memory.  I suggested that we look at one of her photo books. She thought that was a good idea, and we spent well over an hour looking at one of her father’s family. She enjoyed every minute but was getting tired. We adjourned to the bedroom where she worked on her iPad until it was time to go to bed. I have had to encourage her to get to bed many nights lately, but that wasn’t necessary this time.

Even though she was in bed a good portion of the entire day, we enjoyed ourselves. After we were in bed, we talked briefly about the day and agreed it had been a good one.

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The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

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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.