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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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Changing Attire for Bed

Up until the past six months or so, Kate’s choices of things to wear to bed have been the same as they were throughout our marriage. She has always been very conventional. She has several night gowns as well as a collection of robes. Her general pattern was to put on a robe over a gown and read before going to bed. Then she would take off her robe when she went to bed. More recently, she has made a change.

This began several months ago when she would bring a robe, but no gown, into our bedroom. When I noticed this, I asked if she would like me to get her a gown. She would either say yes or tell me that she would get one. After this happened a few times, I started getting a gown in advance and putting on her side of the bed. She often chose to wear what I was selecting but sometimes ignored what I had brought. In those instances she would get a robe.

For a while, I continued to select a gown for her, but it appeared from what she actually wore to bed that she preferred to sleep in a robe. I asked her if there were something about a robe that she preferred over a gown. That was silly for me to ask. Naturally, she was unable to explain and didn’t want to talk about it.

Since then, she has been following a fairly consistent routine. She usually sleeps in a robe, but once in a while she picks out a gown. There have been a few times when she has slept in her clothes. Last night, however, she made another change. We had come back from opera night at Casa Bella around 9:15. She got ready for bed pretty quickly. I got her medications. She brushed her teeth. Then she undressed. Instead of getting a robe or a gown, she put on the cardigan sweater that she had worn over her top when we went to Casa Bella. As I often do, I am wondering where this is going.

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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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Kate’s Changing Response to the Sitter

The other day I mentioned that I continue to feel a degree of uneasiness when I leave Kate with the sitter. I also mentioned that this might simply have related to Kate’s mood last week and that I would be carefully observing this week to see if there might be more to it. I’m far from saying that I know what’s going on, but today was the third day in a row that she failed to display the kind of enthusiasm she has exhibited in the past. I had grown accustomed to her warmly greeting the sitter upon her arrival and also thanking her and saying goodbye when she leaves. She hasn’t responded this way for the past three visits.

Kate has also changed in two other ways. First, she has been sleeping later. As a consequence, there has been much less time between the time she gets up and the arrival of the sitter. As her caregiver, I have felt it was a little bit abrupt to hand her off to the sitter when we had not spent much time together. I hasten to say that I don’t know that Kate feels the same way. It’s just that I have felt our spending some time together at Panera has been a good way for her to fully wake up and enjoy the day. When I wake up, I am ready to go. Kate has always liked a little time with very little talking before she is ready for the day.

The second change is that she hasn’t wanted to spend much time with the sitter at Panera. Last Wednesday and today, the sitter met us at Panera because we had arrived so late. In both instances, the sitter told me that Kate hadn’t wanted to stay long after I had left. Neither did she express an interest in going back later. This past Friday they didn’t go to Panera at all. The sitter told me she had suggested it, but Kate had not wanted to go. This is quite a change from the past. Upon the arrival of the sitter, I have often mentioned that they could go to Panera if they wanted, and Kate has been excited and wanted to go immediately.

I should add that after the sitter has left, she has been ready to go to either Panera or Barnes & Noble. That leads me to believe they are both still appealing places for her to spend some time.

These changes do not cause me to think about changing sitters. These are the same ones who have been coming for six months, and Kate has liked them. It does, however, make it harder on me when I leave.

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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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Kate’s Changing World

I imagine those who read this blog on a regular basis would say that Kate and I have maintained an active lifestyle throughout the period since her diagnosis. You are right. We are busy. Upon receiving the diagnosis, we made a commitment to do as much as we could with our remaining time. I think we’ve done pretty well. I have become an event planner for our daily lives. That doesn’t mean planning lots of special activities although there have been plenty of those. It means making the everyday activities special. Things like our morning visits to Panera as well as eating out for lunch and dinner have become highlights of every day.

We do live full lives; however, that doesn’t mean that life is the same as it used to be. Even before Kate’s diagnosis, she gave up her most fulfilling activity as our church librarian because the early symptoms were keeping her from performing her duties as she knew they should be done. She had served faithfully for 19 years and had made the library the “go-to place” for Sunday school teachers and children. Her academic credentials (M.A. in English and second Master’s in Library Science) combined with her professional background as an English teacher and school librarian made her a perfect fit for her position at the church. She took great interest in helping everyone who was looking for just the right book(s) for a particular occasion or person. She worked nearly fulltime as a volunteer. Stepping down from this position was a major change in her life.

At the time of Kate’s diagnosis, she was still driving. She continued to drive another two and a half years before having an accident. Until then, she was free to do pretty much what she wanted. She and her friend, Ellen, had lunch together every Monday when I was at Rotary. They also got together at other times during the week and often went shopping together. They shopped for plants. They shopped for clothes. They shopped for knick knacks for their homes.

I know from looking back at my journal that Kate experienced lots of frustrations related to her worsening memory, but there were no outward manifestations that anything was wrong. It was only after three years that Kate told Ellen about her diagnosis. Ellen had not even suspected.

After an auto accident in which she totaled her car, Kate’s world became much smaller. She was now dependent on me to get her where she wanted to go. Of course, she also got around with Ellen, but it wasn’t like having the personal freedom that driving her own car had given her.

She continued to be active in PEO. She attended their monthly meetings, hosted meetings at our house, and occasionally presented the program. She also served on a scholarship committee that had responsibility for interviewing and recommending candidates for scholarships and grants through the national office. She began to forget meetings and found it difficult to fulfill her obligations on the scholarship committee. As her memory worsened, she couldn’t remember the other members. I suspect that she had difficulty participating in the conversations. She no longer wanted to attend and ultimately dropped out.

That is when two of her existing activities came to dominate her life. The first was the yard. She had always enjoyed tending to her plants. Now she could devote more time to that interest. The other was her computer. For a number years she had enjoyed working on photos and had started work on a couple of family albums. She never came close to completing one, but she was very active in picking out and editing photos. Even today, when someone asks her what she is doing, she tells them she is working on her family albums. Like most of us, she also used her computer for emailing.

At some point, I gave her an iPad and introduced her to several jigsaw puzzle apps. Little did I know how important these would become in the years ahead. With the progression of her Alzheimer’s, working on the computer became more difficult. She was frustrated. She stopped checking emails. Gradually, she stopped using the computer.

That left two activities she could do on her own, pruning the shrubbery and working jigsaw puzzles on the iPad. She had no trouble filling an entire day between these two activities. They were things she could do without having to experience the challenges of coordinating with other people. She could work at her own speed, and nobody was telling her what to do.

Her friendship with Ellen was her only close personal relationship. Our children had grown up together in the same neighborhood. Ellen and her husband, Gordon, were our very closest friends in Knoxville. Then in 2013, Gordon died. Two years later in August 2015, Ellen had a stroke while visiting her daughter in Nashville. She has never been able to return and is now in memory care. We try to visit her once a month, but the relationship can’t be the same now.

So Alzheimer’s cost Kate her volunteer job at church. Then she had to give up driving. She lost the ability to use the computer. She lost her best friend to a stroke. Her world has shifted from one of high involvement to only working in the yard and on her iPad.

One of my concerns right now, is that she has been spending less time in the yard than she used to. The weather accounts for part of it, but I think it is more than that. Three years ago, we were visiting Lowe’s two to three times a week for plants. She spent a good bit of her time planting them. Finally, she was running out of places for new ones. She could, however, continue to prune. She started her pruning a year before my dad’s 100th birthday party in October 2013. Gradually that turned into just “pulling leaves.” Right now there are few leaves left on any of our shrubs. That may also play a part in why she is not spending time in the yard. Spring will be here soon. I am eager to see if her interest in the yard will return to the passion it was before. I fear that it won’t. That will leave only her jigsaw puzzles. Everything else she does is dependent on me. She needs me more than ever. Yes, I keep her busy, but there is no denying that her life is dramatically different than it was before Alzheimer’s.

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Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

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Sleeping Changes

It is 11:22, and Kate is just getting up. Even that is only after I started gently waking her about 10:50. I hate to wake her, but the sitter will be coming at 1:00, and we need to get lunch before then. As I have noted before, since coming down with the flu, she has been sleeping more. That has meant getting up later since she has still be in going to bed about the same time. Last night we went to Casa Bella for dinner and didn’t get home until 9:00. Still, this is unusually late for her to get up.

Although I think she should be over with the flu now, it may be that this is one of the aspects that is hanging on. She is not coughing much at all now, but once in a while she does. It sounds very much the way she did when she got sick almost two weeks ago. Her being tired may be another residual symptom.

I’ll continue to monitor her sleeping to see if this represents a more permanent change. I have to remind myself that two or three years ago, she was sleeping more than she has in recent years. The difference is that she was taking both morning and afternoon naps. She gave that up a good while back though she had a long nap while the sitter was here two days ago.

I have very carefully arranged for the sitter to come in the afternoon so that Kate and I could spend the mornings together. If she starts sleeping this late every day, I will spend much less time with her. On a day like today, I will have about an hour or so with her for lunch. Then the sitter will have her for four hours. When I return, it will be within an hour of dinner time. Then we are winding down for the day. That would be a big change for me. I’m not sure I am ready for that.

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Getting Back to Life as Usual

Yesterday Kate and I took what I would call our first steps in getting back to normal after the flu. Kate was up somewhat earlier, and we got to Panera before 10:30. The best news of the day was that Kate’s cough has virtually stopped. That made for a much nicer day. We went directly from Panera to lunch and were back home in time for the sitter. Kate is still tired. She got right into bed when we got home. That is where she was when the sitter arrived. I brought Mary in to say hello and told Kate I was off to the Y. She remained in bed and stayed there another two hours or more according to the Mary. That is the first time I recall her resting so long with the sitter here.

I went to the bedroom about fifteen minutes ago to see if she were still sleeping. I saw that she was up. When I walked into the bathroom, I noticed that she had had another accident and went to get a towel to clean it up. When I returned, she was standing by our bed with her underwear and a pair of pants in her hands looking a bit confused. I asked if I could help her, she nodded. I asked what she needed. She said, “Something to wear.” In moments like these she looks so helpless. It is painful to watch. I went to her closet and picked out a top to go with the pants she had picked out (the ones she had worn yesterday and thrown over a chair beside the bed). I gave her the top, and she proceeded to the bathroom to take a shower. She can be very groggy in the morning anyway, but the kind of confusion I saw this morning can only be another sign of Alzheimer’s. It is just a little thing, but I see little things like this making their way into our lives. There’s no way to stop it.

This afternoon Kate has a facial at 2:00. Then we have Broadway night at Casa Bella this evening at 6:00. I am optimistic about our having a nice day.