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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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Sleeping Late Again

In recent weeks I have noted that Kate has been sleeping later that has been her custom for quite a while. In the past few days, however, she has been getting up at what I would consider an ideal time, around 9:00. That gives her what has usually been an adequate amount of sleep, 12-13 hours. It also gives me time to take care of a few things before she is awake.

Just when I thought she might be establishing a new pattern, she changed again. This morning, she was still in bed at 9:15. I checked on her a little later and discovered that she had gotten up from our bed and gone back to sleep in her room. Just before 11:00, I checked once again. She was back in our bed. At 11:25, she had gotten up and was making up the bed. Then she went to take a shower and dress. It was getting close to 1:00 when we got to Panera for lunch. I felt a little pushed because she had an appointment for a facial at 2:00. I tried not to rush her. I must have been successful because she didn’t express any irritation or have a panic attack. A couple of times she did say, “Just a minute” when I checked to see if she were ready.

As a caregiver, I am always trying to determine what, if anything, Kate’s current behavior signals for the future. In this case, I know that people with dementia require more sleep as the disease progresses. Sooner or later, I know that might happen with Kate. Am I seeing the first signs of this change? Is this judge a random shift from her regular sleep habits? Is there something else that I haven’t identified that might be causing the change? At the moment, I would answer “I don’t know” for each question. Because I am seeing so many other signs of change, I suspect this is part of a normal progression, and that will gradually sleep more than she used to. I will be looking closely to see if there is another explanation.

I had already been avoiding any commitments in the morning. Just last week, I changed the location of her next doctor’s appointment to a less convenient office so that she could see him in the afternoon. I will continue to be more rigid about this in the future. It will be easier for both of us.

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One Other Change That I Notice

Since my post yesterday afternoon, I remembered one other recent change in Kate’s behavior. She has become unusually sensitive to the music played in many restaurants and also sudden noises. I’m not sure if this has anything to do with her Alzheimer’s, but it is a very noticeable change from the past. This is not brand new. She began to be bothered by these things several years ago after her diagnosis. The difference now is the degree of sensitivity. It doesn’t take her long when we are in a restaurant to comment on the type of music being played. Again, it’s not just that she doesn’t like it. It’s that she seems so annoyed by it, almost like the reaction that some people have to the scraping of fingernails on a chalk board. (Is that still a problem in this age of digital technology?) Similarly, when we were at Barnes & Noble yesterday, the woman who was fixing the drinks in the café bumped a ceramic dish with something. The noise wasn’t that loud, but it was audible throughout the café. Kate responded physically and audibly. Almost all the other tables were taken. No one else seemed to notice. A little later, I bumped my stainless steel coffee cup against the table. No one else around us even responded at all. Kate certainly did. On at least one occasion recently, a young woman dropped her keys on the floor. Kate jerked and made a noise. The woman apologized. It was nothing for the rest of us, just Kate.

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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.