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How quickly the memory fades.

We’re in Barnes & Noble right now. We came here after dropping off Kevin at the airport for his flight back home. A couple of minutes ago, we looked across the table at each other. She pointed to her iPad. The expression on her face signaled a question. At first, I couldn’t figure out what she wanted. Then I realized that she was asking if she could work another puzzle. I told her that would be fine. I wonder why she asked after she had been working them for a full hour or more? One more mystery.

As she went back to her iPad, I said, “I’ll bet Kevin is in the Atlanta airport right now.” She said, “Where?” I repeated myself and then said, “He is changing planes to catch a flight to Lubbock.” Then she said, “Who are his parents?” I said, “You and I.” Then she said, “What’s his name again?” I said, “Kevin.”

In a few minutes, I received a text from Kevin saying he was at the gate for his flight to Lubbock. When I told Kate, she asked, “Where is he going?” I said, “To Lubbock.” She said, “For a job?” I said, “No, he is going home. That’s where he lives.” She answered, “Where has he been?” I said, “Here.” She said, “Oh, that’s right.”

It always seems strange to observe how well she functions in many ways and then how quickly she can say or do something so revealing of her Alzheimer’s. I think of the connections in her brain like an electrical wire that is partially broken but hanging by a thread. Sometimes the electricity flows through despite the break. Other times it doesn’t. It’s hard to predict when each will happen.

As I was writing, she said something. I thought she was ready to go, but she was trying to solve a problem with her puzzle. I asked if I could help her and fully expected her to say yes. She surprised my by saying, “I got it.” Despite her growing dependence, perhaps because of it, she still works hard to do some things on her own.

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More Forgetting and Confusion

Our son, Kevin, arrives from Texas today. Since he learned about Kate’s diagnosis, he has visited us two or three times a year. Each time, he comes without his family and stays several days. That has enabled him to devote more time to be with Kate and see for himself how she’s doing. During each of his previous visits, he has felt good about how well she is getting along. He calls frequently, and I have been very open with him and our daughter. He is aware of how much her memory has declined. It is quite possible, however, that he may not observe any radical difference since we were with him and his family in January.

The reality is that she has experienced notable changes since his last visit in Knoxville this past September. I notice differences more than ever. One of those is her frequent asking me for the names of people and places. She seems to be developing a comfort level in expressing her difficulty remembering things. I suspect that she has had this problem for longer than I am aware because previously she didn’t ask for help recalling names. She is obviously working hard to remember them.

She has become very open about not knowing where she is at any given time. Frequently, wants to know what city we are in. Other times, it is the name of one of the restaurants we frequent so often. Several times over the past few days, I have mentioned that “our son will be with us on Saturday.” Each time she has paused a moment and then asked, “What is his name?” Yesterday she asked about his family. She couldn’t remember the names of any of them. I went through the names of each one, but recognized that she won’t remember them.

As I said in a post a few weeks ago, connecting the name with a person is one of the most superficial levels of knowing a person. I am confident that when she sees Kevin today, she will know exactly who he is. I also know that for someone with Alzheimer’s forgetting names is a first step in the process of not remembering the person. That makes me sad. It also makes me wonder when I will discover that she no longer remembers me.

Memory problems are not the only signs of change that I am observing. She also shows more confusion. She has greater difficulty putting her clothes on properly. Very often she puts her clothes on inside out or backwards. When we arrived at Panera yesterday, I noticed that she was wearing shoes that didn’t match. I didn’t say anything to her about it. I didn’t think it was that important. Before we went to dinner, I did mention it. She looked down at her feet. At first, she didn’t notice that she was wearing two different shoes. Then she said, “You’re right.” She went to change shoes. When she returned, she hadn’t changed shoes at all.

As we left the restaurant, I said something about being near our first house in Knoxville and also the house where Ellen had lived before her stroke two and a half years ago. I told her I would drive by both houses. I also said something about how long we had lived here. She then asked me if we were in Fort Worth.  I reminded her that we live in Knoxville.

Months ago I reported that she almost always asked me if she could work in the yard when we came home. That has gone away since she hasn’t been working in the yard. She is doing something similar. She seems to be unsure about doing things that one would not expect to be unsure of. For example, when we came home from lunch yesterday, she pointed to the bathroom off the laundry room. She was asking if she could use the bathroom. When we arrived at the restaurant tonight, she asked if she should take her cup with her. I told her they would have glasses for us. Just before leaving a restaurant the other night, she asked if she should take her glass with her or leave it on the table. Last night at dinner she asked (again with hand signals) if she could drink her Dr. Pepper. All off these things suggest that she is confused as to what is the right thing to do, and she is looking to me for guidance. She is more confused than I had guessed.

Despite that confusion, we ran into three couples from our church at dinner last night. She was able to greet them as easily and naturally as if she didn’t have Alzheimer’s. That seems to be well ingrained in her. I hope that continues for much longer.

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Noticing Lots of Things

Since starting this journal in 2011, I have not kept a regular schedule for my entries. I write when something catches my attention. As I have looked back to the early years, I notice that I didn’t write nearly as often. I think that’s because Kate wasn’t experiencing as many changes. Our lives weren’t significantly different than they were before the diagnosis. Now there are so many things occurring that I find it impossible for me to remember them all.

That has been particularly true over the past few months. While I don’t know what life will be like in the next six to twelve months, I do have a distinct impression that Kate is going through a transition period. The most prominent sign of that is her forgetting close family and friends. It also includes a failure to recognize where she is. A year ago, she had difficulty remembering where we were when we traveled to another city like Asheville or Fort Worth. Now she doesn’t remember where she is when we are right here in Knoxville. As we drove to Chalupas for dinner last night, she asked, “Does this city have a name?” When I told her, she said, “I know that. It just slipped my mind.” Unlike the early days, she didn’t sound very frustrated that she hadn’t remembered.

As we left the restaurant, she asked, “Where are we right now.” I told her again that we were in Knoxville. Then I mentioned that we had lived here 47 years and that was much longer than we had lived any other place. She said, “What’s the name again?” Once more I told her. She repeated the name several times. About a mile down the road, she asked me to tell her again.

It’s not just people and places she is having trouble with. On the way to lunch yesterday, I commented on the seeing the first blossoms of Lady Banks roses. She said, “You’re going to have to tell me the names of all of the flowers later when I am more awake.” I felt a touch of sadness hearing her say this. She has always loved these roses and the other flowering trees and plants are be beginning to come out. What a shame to see her lose these memories.

Although I said she doesn’t seem to express a high degree of frustration when these things happen, she often says things like, “I know you get tired of my asking you.” That let’s me know that she recognizes that she keeps asking the same questions. I keep giving her the same answer, “That’s what I am here for. I want you to ask as often as you want to. Remember I am your ‘MM.’” That is the nickname she gave to me some time ago. It stands for “My Memory.”

One of the other changes that I have noticed is that she is more sentimental than she used to be. In the last few weeks, I have seen her with tears in her eyes several times. This is a rather dramatic change from the past. She has never been one to cry. Since her diagnosis, two different types of situations have brought her to tears. At first, it was the panic attacks she had when I was trying to get her to hurry to get someplace. I quickly adapted by trying to avoid any time deadlines, when possible. On several occasions, when we might have to rush to get to a concert, I would simply choose not to attend. For quite a while, I have tried not to schedule anything in the morning. Now I have become more rigid. I don’t schedule anything before noon. I even changed the office we go to for her doctor’s appointments. Now we go to one on the other side of town so that she could have afternoon appointments.

Her recent tears have occurred when thinking of good things that have touched her. One of those is music. The other is her family. As her memory of other things began to fade, she talked a lot about her family. That was particularly common when we were with friends. I think that was because her memory made it difficult to remember everyday things like events in the news or other things that were happening with our friends. That interest in family continues but with a different twist. Now she talks with me about her parents and their families as well as our own immediate family.

Yesterday afternoon I mentioned something about a cousin of hers who recently passed away. That prompted her to reflect on her mother and father and then her aunts and uncles. Her father was one of eight children, so she had plenty of aunts and uncles. Six of them lived in Fort Worth where Kate grew up. Another lived a short distance away in Dallas. Only one lived out of state. That meant she had many childhood experiences with her larger family. As she talked, she got more sentimental. She kept saying, “That’s all I’m going to say.” A second later she would continue. Mostly she said the same things again. As she did, I could see the tears welling up in her eyes.

She seems to be working hard to hold on to what remains of her memory and her ability to handle life. One example is her asking me to tell her the names of people and friends. I can also tell that in moments when she has been quiet, she has been thinking of someone’s name. For example, yesterday in the car, she said, “Ken Franklin.” That is her brother. One other time she said her mother’s name. I asked if she had been trying to think of the name. She said, “I knew the name. It just wouldn’t come to me.”

She has always been careful to make up the bed every morning. She once told me that her mother had emphasized that was something she should always do right away. Two or three years ago, she stopped. Recently, she has started again. She doesn’t do it perfectly. The important thing is that she does it. I see it as another effort to take control of some aspects of her life.

She has become so open about not remembering names that I did something I have avoided doing until today. Without her asking, I asked her if she knew what city we were in. She said very calmly without conveying any sense of being troubled, “No.” I told her once again, “We live in Knoxville.”

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Forgetting Family

Yesterday my brother, Larry, who lives in Birmingham dropped by on his way to his farm near Rogersville. This was the first time we had seen him in six months or more. For that reason, I was particularly interested in Kate’s memory of him. As she has done for other family members, she has asked me his name on several occasions. When he arrived, she didn’t get right up and greet him, but she did appear to recognize him. We had a nice conversation for a short while before leaving for the restaurant. As we walked out to the car, Kate pulled me aside and whispered, “Is he my brother?” I said, “He’s my brother, Larry.” We went on to the restaurant where we had a nice meal and good conversation. Nothing happened that would suggest that Kate’s memory was as poor as it is.

Before Larry left for his hotel last night, we decided to meet him at Panera this morning. As Kate and I left for Panera, I reminded her that we were meeting my brother. She said, “What’s his name?” I told her. Almost immediately, she asked again. I told her again. Then she repeated it several times. She works so hard to remember things, but her brain just won’t retain the information. I doubt that she remembers our having dinner together last night.

She got along fine this morning. The only obvious sign of her Alzheimer’s occurred when we were talking about young people and college. This related to Larry’s saying he had a number of friends whose children started in one college and changed to another. Kate indicated she had done that. Larry asked her where she had gone before TCU. She couldn’t remember. She said she thought it was someplace in Arkansas. It was really Oklahoma.

The visit with Larry is one of the few times that I was definitely aware that she was having difficulty remembering a family member. I don’t mean just forgetting a name. She has often done that with grandchildren. In this case, when she initially saw Larry she didn’t recognize him and thought he might be her brother, Ken. That suggests that she would probably have difficulty recognizing her brother as well. I had been considering another trip to Texas to see him knowing that could easily be her last trip back home. The experience with Larry encourages me to start making plans for a visit. Time is running out.

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Simple Pleasures

Recently, I have connected with a number of other caregivers on Twitter. Most of them are authors who have written about their experiences as caregivers. Others are people who are working to educate the public about the variety of issues surrounding Alzheimer’s and other forms of dementia.

It has been especially encouraging for me to discover how many other caregivers are able to find moments of pleasure in the midst of the changes that are ongoing for the ones they care for. It is not that everything is rosy or that no one has experienced frustrations and other challenges. It’s that there are always moments of pleasure as well.

It’s almost 2:30 p.m., and Kate and I have faced both the good moments and more challenging ones today. Her good mood from the very beginning of this day is sufficient to make me say it’s been a good day, but there is much more for which we are both grateful. It’s a cool, rainy day, and we are sitting in front of the fireplace in our family room, something we both enjoy but don’t take advantage of very often. Of course, I have music playing in the background. She is working puzzles on her iPad while I write this entry for my blog. All is well right now, and I am confident the rest of the day will be the same.

At the same time, we have had a few moments I would have preferred not to have experienced. Even though she’s been in a good mood, she has gotten irritated with me a few times. One of those was when she thought I was taking too long to get ready for Panera this morning. When we got in the car, instead of saying something like, “Give me a break. I’ve been waiting two hours for you to get up,” I said, “I guess I do keep you waiting sometimes.” She responded in a very forgiving way and said, “You don’t keep me waiting very often.” Her irritation was over.

Twice at lunch she asked me “Where are we?” I told her Knoxville. The second time I added, “Would you like to guess what state?” She quickly said, “Tennessee” and added, “See, I’m smarter than you think I am.” It saddens me when I see her unable to easily identify where we are when we are not traveling. Just a few months ago, this would not have been a problem.

When I ordered a kale salad at lunch, our server told me they were out of kale. I ordered another salad and asked if I could have a serving of brisket with it. As she walked away, Kate said, “What was that all about?” She hadn’t been able to follow our very brief and simply conversation. When I see instances of her being confused over normal things like this, I have a greater appreciation of her inability to understand what is happening in movies or plays. She is able to enjoy musical theater and opera because of the music itself even if she doesn’t have any idea of the plot or who are the primary characters.
I know all too well that in the long run that many of life’s current pleasures will not provide the same enjoyment they do now. For now, we live in the moment and are grateful.

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Kate works so hard to remember names and places.

Although she still doesn’t talk about her Alzheimer’s, it is obvious that she is struggling to remember the names of people and places and where she is at any given moment. For example, this morning as we pulled into a parking space at Panera she said her mother’s full name. I said, “That’s right.” She said, “We’re both right.”

Another example occurred after lunch, she asked, “North Carolina or Tennessee?” I answered, “Tennessee. Knoxville, Tennessee.” Since both of these exchanges were not prompted by me, I have to believe she was thinking about both of them and wanting to be sure. I wonder how much time she spends trying to think where she is and what are the names of her family and close friends.

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More Examples of Kate’s Memory Loss

This is a follow up to my previous post in which I noted some of the changes in Kate’s memory. Since then, I have observed several other examples. One occurred at lunch when she asked, “Does this place have a name?” This was at Carla’s Trattoria where we eat lunch once a week. This afternoon as we were leaving for her monthly massage she asked, “Are we still in Tennessee?” Of course, this is the correct answer, but the question showed she wasn’t sure. And we have lived here almost 47 years. This is much more a commentary on the weakness of her long-term memory as opposed to her short-term memory.

When I picked her up from her massage, we drove directly to get our haircuts. As we were leaving from getting our haircuts, I told her we had a little more than an hour before it would be time to leave for opera night at Casa Bella. I asked if she would like to go home or stop by Panera. She said she wanted something to eat. I suggested we go to Panera and get a bagel. That suited her. Just a few moments later, she asked where we were going. She had already forgotten.

Once at Panera, I selected a table and she went to the restroom before taking a seat that was in a different section of the restaurant. Knowing that she would not immediately find me, I stood up where I could see her, and she might see me. In a minute, I saw her. She was looking all around. She had absolutely no memory of where the table was. I waved my hand, and she noticed me. Then she gave me a dirty look and shook her head as she walked toward me. She was obviously annoyed that I hadn’t made it easier for her to find me.

That reminds me of something else. On several occasions recently, she has asked me to wait for her outside the restroom at a restaurant. Those are the first times I ever recall her doing that. That in itself shows a greater recognition that she won’t be able to find her way back to where we were sitting.

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Reflecting on Change

When Kate was diagnosed seven years ago, I did not expect that we would be as active as we are today. That is not because her condition has not changed since then. It has changed considerably. I don’t think I have always captured the changes as well as I might have. In preparation for creating this blog, I have re-read every entry posted in the Archives and have been surprised at how much of my description of Kate’s symptoms seem to be the same as they are today. For the most part, I believe that relates to what I would say is the lack of precision in the words I have used. For example, early on I made many references to problems with her short-term memory (STM). Today, I am saying the same thing; however, the changes between then and now are dramatic. If I had been able to use a mathematical scale (like doctors use when they ask patients the level of pain they are experiencing) instead of words, I might have been using numbers like 6, 7, or 8 where higher numbers indicate better STM. Today I would use numbers like 2 or 3 to reflect her STM.

To give you a better idea of what I mean, yesterday she asked me to tell her my name. I told her. She said she knew that. Then I asked her to tell me my middle name. She couldn’t do it. I told her. Less than a minute later, she could not recall it.

Her long-term memory (LTM) was still pretty good at the time of her diagnosis. It has gradually gotten worse over time. As far back as 3-4 years, I was aware that she was slipping on details about family events that had been important to her. Until the past six months or so, she talked a lot about her mother and her family. She is not doing that now. I think it is because they are fading from her memory. When I mention them to her, she responds very generally that conveys she remembers these past events. She does not say anything else about them.

In recent weeks, she has more frequently asked me to tell her names of people (including our children, grandchildren, and me). She also asks me to tell her “where we are.” Sometimes she is asking the name of the restaurant in which we are eating. More often she means, “What city are we in?” While at Panera two times this past week, she asked, “Does this place have a name?” As we were leaving Panera this morning, she asked, “Where are we?” I told her. Then she asked, “What state is it in?” These questions represent significant changes from even last year.

If I had known these symptoms seven years ago, I might have underestimated how much we can still enjoy ourselves. It saddens me to know how little memory she has now. At the same time, I am encouraged by the pleasure we get out of life. Tonight is Opera Night at Casa Bella. We will sit with the same people we have sat with the entire four or five years we have been going. Kate doesn’t remember their names and couldn’t tell you anything about them if you asked. On the other hand, she will feel comfortable with them even if she doesn’t say much. On top of that, she will love the music. How grateful I am for that. I know that, too, will change, but I am optimistic that will be a while.

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Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that.

I do know that when we were in the waiting room of her dentist’s office this morning that she asked, “What are we doing here?” I explained that she was there to see her dentist. She said, “I don’t even remember who she is?” I also know that I had to wake her up at 10:00 to get her ready for her appointment and that she was quite groggy when she got up.

I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

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What does it mean to know someone?

Yesterday afternoon we attended a memorial service for a former member of my Sunday school class. At the reception afterwards, another friend approached me and said that she had spoken with Kate. She said, “She seemed to recognize me, or is she just good at pretending?” I said, “Well, she is very gifted in social situations, and I am so glad that she is. It means she is able to function much better than one might expect.” This exchange brings to mind something to which I have alluded several times before. People often want to know “Will she know me?” Or “Did she really know me?” The answer depends on what one means by “know me.”

What does it mean to know someone? I have known the woman whose memorial service was yesterday afternoon for at least ten to twelve years, yet I learned things about her in the service I had never known at all. Did I know her? I would say “yes,” although there were many things I did not know about her.

When Kate and I are out various places, we run into people I have known through my business. I would say that I know them. That is, I recognize them as someone I have worked with and often know their names and a little bit about them – the organization they are with and the position they held. On the other hand, I can’t say that I know them well. There are plenty of times I recognize someone but can’t call the name. There are also a few occasions when I can’t recall the name or the connection that we have had.

I think when people wonder if Kate knows them, it is that kind of knowing they are talking about. They wonder if Kate recognizes them and remembers the connection they have had in the past, not necessarily the name. What I know about Kate is that she will almost never remember the name of a person she meets. For her, and, I suspect other people with dementia, that is the first thing to go. Think about it, that is a common experience for those of us who don’t have dementia.

On the other hand, when we meet people in public situations, we can pick up non-verbal cues that do communicate that this is someone we know. We respond with a degree of familiarity even if we can’t recall the specific connection – church, work, a place we exercise, etc.

That is exactly what happens with Kate a good bit of the time. The best illustration would be with family members. When we are together, she remembers them and that they are family. In particular, I believe she still recognizes our children in this way, but she is beginning to lose the connection with their names. The grandchildren are different. Her history with them is much shorter. We don’t see them regularly. And they are growing up and changing all the time. In this case, I am sure that she knows she should know them, but she has lost the connection except when they are in their own homes. That provides a cue that she needs to make the connection.

I also know that Kate is losing her memory for people even in this “emotional” sense. She encounters more situations now in which she has no idea who the people are who are greeting her warmly. Her social skill comes into play at this point. She knows the appropriate responses.

So going back to my friend at the reception. Did Kate know her? I suspect not. I suspect that she simply responded to the person in the same natural way that she responds to anyone she meets. To that person, it seems that she knows them. That makes me happy.