Update on Sleeping

The time is 11:39 a.m. as I begin this post. Exactly one hour ago, I tried to wake Kate up so that we could have lunch before the sitter arrives at 1:00. She finally got up about five minutes ago. As I have noted in recent posts, she has been sleeping later over the past couple of weeks. One Saturday, I let her sleep until 11:30. Another day I woke her at 12:20. In each of those cases, she got up without a problem. I can’t account for why it has been so difficult for her to get up today. She went to bed around the same time as usual. The past couple of days she has slept until ten o’clock. At first, I was associating her sleeping later to the impact of having had the flu. Now I am wondering if this might not be another of those normal symptoms of her Alzheimer’s. Of course, it could be some combination of the two.

This morning, I received a reminder that I have an ophthalmologist’s appointment at 10:15 Friday morning. That makes me wonder how much trouble I may have getting her up and ready to go with me. I don’t want to leave her alone. At the time I made the appointment, I would not have thought it would be a problem for Kate to be ready that early in the day. At least we are not going out the night before.

This is just one more of the many little things that crop up that would have been of no consequence before Alzheimer’s.

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.

Movies Becoming a Thing of the Past

Movies have been an important part of our activities during our marriage. They have been especially important during the seven years since Kate’s diagnosis. For at least a year now, it has become much harder for her to enjoy them. I continue to try to find something that might appeal to her, and sometimes I am successful. The last one she enjoyed was a recent one, Darkest Hour. I had hesitated to try it, but when I told her what it was about, she wanted to see it. I think it must have been impossible for her to follow. I am sure that she understood that it was about Churchill and World War II. I am also confident that she could sense the drama involved. These are the things that must have caused her to like the film.

Today at lunch I checked to see if there might be another film that we could try. I saw that one of our theaters was showing The Philadelphia Story with Katharine Hepburn, Cary Grant, and Jimmy Stewart. Knowing that Kate has always liked old movies and each of those stars, I asked if she would like to go. She jumped on it. I bought the tickets right then. We finished our meal and went directly to the theater.

It is a film that is certainly dated, but it is also a classic. It came out in 1940, the year I was born. I thought it was fun to see these stars at such an early stage of their careers. Several times during the movie, I heard Kate yawn audibly. I didn’t think that was an encouraging sign. It wasn’t until we got in the car that I asked what she thought of the movie. She said, “I don’t even know what it was about.” I told her she was a good sport, that I appreciated her trying movies even if they didn’t turn out to be winners. She said, “Well, you can’t expect every one to be hit.” So true. I am finding that the hits are fewer and farther between these days. We still have plenty of things that entertain us, but I hate losing something that has been so important in the past.

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.

Working Jigsaw Puzzles at Barnes & Noble (For Hours)

It is 5:06 p.m. We’ve been at Barnes & Nobel for almost three hours. When we got here, I thought we might be here no more than a couple of hours, perhaps less. What is amazing is that as I look across the table at Kate, I see that she is working intently on her iPad. She hasn’t moved since we arrived. She is doing the only thing she does on her iPad, working jigsaw puzzles. Over the past two-to-three weeks, she has spent almost no time in the yard. She must average 6-8 hours a day.

(At this point, she looked at me and gave me the look that says, “It’s time to go.”  We decided to go to the restroom and then to have an early dinner.)

Here’s the rest of the story that started at Barnes & Noble. I was saying that Kate has not been working outside much in the past few weeks. That means her only activity is working jigsaw puzzles on her iPad. Starting as much as a year ago, she began to have some difficulties with the puzzles. This meant she relied on me to straighten things out every time she got in trouble. That has improved substantially in recent weeks. It is nice to report that something is better. I have a tendency to think that everything only gets worse.

My concern now is that if she lost interest in her puzzles, she would be left with nothing. That would be a serious problem. Watching her today gives me renewed hope that she will continue to pursue this activity for the indefinite future.

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.

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.

The Magic of Music

For those who have been active readers of this blog, you will understand how important live performances (theatrical and musical) have been to Kate and me. During the past year, the appeal of movies has declined substantially for Kate. I hate that. For most of our marriage, they have been almost as important as seeing events on stage. I wonder if and when the same will occur for live performances. I feel optimistic that it will be a while, especially after last night.

It was Broadway night at Casa Bella. We shared our usual table with the parents of the woman who currently operates the restaurant and another couple with whom we have sat on several other occasions. It was a terrific social occasion with them, and the program was outstanding. In recognition of Valentine’s Day, the music featured love songs from the past like Irving Berlin’s “Always,”  “Moon River,” and “The Twelfth of Never.” Since the audience was made up largely of people in our generation, you know it was a happy crowd.

What makes the difference for me, of course, is how Kate responded. Once again, she loved it. She exclaimed, “Wow” after every piece with enthusiastic applause. We’ve been attending these musical evenings at Casa Bella for almost five years. She has loved every one. We always leave very happy as we did last night. It is wonderful to know that we have three nights like this every month.

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.

Happy Valentine’s Day

I didn’t need a special holiday to celebrate our bouncing back from the flu. It is enough just to feel better. Today is clearly our best day in almost two weeks.
First, let me follow up on my previous post. In that one, I commented on the fact that Kate had not been in a good mood up until near dinner time. I am glad to say that she cheered up at dinner. She takes special pleasure in going to Chalupas where we eat on Monday nights. As I have described elsewhere, it is an especially friendly place where she feel very comfortable.

After that, we came back to the house where we adjourned to the bedroom where I watched the evening news, and she worked on her iPad. That has come to be a very good time of the day for us. We are both relaxed and without any obligations and know that we can go to bed any time we want.
Yesterday was a good catch up day. The only item on our agenda was haircuts at 3:00. Kate was up much earlier yesterday; so we arrived at Panera early. We stayed there about an hour and then came back to the house for another hour before going to lunch. After lunch, she was tired. She rested until time for haircuts. It was a quiet day but a nice one.

Today the sitter is coming again. I had cancelled last Wednesday and Friday because of the flu. I will go to the Y and then have coffee with Mark. We’ll have a Valentine’s dinner at 5:30 since they are booked up later. It should be another nice day.