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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.

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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.

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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.

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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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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.

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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.

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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.

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Still Recovering from the Flu

We continue to make incremental steps forward in our recovery; however that isn’t the most important thing about which I’d like to comment. That relates to her mood today. She has been a little depressed, something that I don’t see that often. Part of the reason it made an impression on me is that she had a very good night’s sleep. She got up close to noon on Saturday and 11:00 yesterday. Today, I finally woke her up at 12:20. I didn’t rush her. She got up slowly, and we didn’t get to Panera until 2:00. Earlier this morning, I decided not to go to Rotary and to cancel the sitter. I think I did the right thing.

When she was ready, she was not cheerful. I didn’t think much about that at first. She is often not ready to engage in conversation when she gets up. She needs a little time. We were at Panera about an hour before I looked across the table and noticed that she was looking bored. I knew she was ready to go home. I asked to make sure, and she confirmed my suspicions.

It was about 3:15 when we arrived home. Recognizing that she was a little depressed, I asked if she would like to work in the yard. It’s not a beautiful day, but the temperature is warmer than we have had in a while. She indicated that she did not. I suggested that we might find a movie on TV or Netflix and watch it. She said okay without any enthusiasm. While she went to the bathroom to brush her teeth, I explored movies. I suggested an old Cary Grant and Audrey Hepburn movie. She indicated she didn’t want to watch a movie. I asked if she would like to look at some of our old photos from or past travels. She didn’t want that either. Then I gave her the iPad and told her to work on it in the family room, and I would find something. I found some old family photos her father had taken along with a couple of albums of our own and took them to the family room.

I sat down beside her and told her I wanted to show her something. I gave her the album with her father’s photos and let her look through them while I watched along with her. She enjoyed seeing them and took her time moving from one page to another. I was feeling good.

When she finished, I said, “Now let me show you something else.” I reached for a box of photos of our own and was going to show them to her. She said, “Do we have to do this now?” I told her no. I had already put on some music that I thought she would like and said we could enjoy the music while she worked on her iPad. She got up and went to the kitchen. In a minute, she had gone outside. I thought that might be a good thing. She hasn’t worked in the yard for more than a week. I think that is mostly because of the weather week before last. Last week, it was the flu.

She was outside for about twenty minutes before coming back inside. She asked if I were ready to go. I told her to give me a minute, and we would go. So here we are back at Panera where we are likely to stay for another 20-30 minutes before we head to Chalupas for dinner. I surely hope she feels better before bedtime tonight.

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Reflecting on Kate’s Social Isolation

Much is written about the social isolation faced by people with dementia and their caregivers. Isolation has had a significant impact on Kate. Until her diagnosis, she was a very active volunteer librarian at our church. She took this position after working  as a librarian/media specialist with the Knoxville schools. She derived much satisfaction working at the church. Even though she was a volunteer, she spent a lot of time there and developed a good relationship with the staff. She was included in their staff meetings and social activities. She often went to lunch with several of the staff on a regular basis.

In addition to the staff, she also got to know a lot of the church members and their children. Sunday school teachers often came to her for resources for their classes. If she didn’t have anything in the church library, she would find the appropriate material elsewhere and get it to the teacher. She developed a strong collection of books and media for children. As our church has a lot of young married couples, we added lots of children. Parents brought their children to the library. Kate loves children and cultivated relationships with them. She offered story time for children in Sunday school and in our weekly day school. Kate’s volunteer work at church became a central focus of her life. She only gave it up when she recognized the symptoms of Alzheimer’s made it difficult to manage her responsibilities the way she wanted.

After her resignation, I invited her to join the Sunday school class that I was teaching. She tried it periodically but never fully engaged. We had a lot of class discussion. I think she found it too difficult to follow.

Beside the church, she had two other important social connections. One of those was her very close friend, Ellen Seacrest. Gordon and Ellen had been good friends since the early 1970s. Our children grew up together, and we spent a lot of time together socially. They were the couple with whom we celebrated New Year’s Eve many years. After leaving her volunteer position at church, the relationship between Kate and Ellen grew stronger. Then after Gordon died in 2013, they became even closer friends. Except for Kate’s brother and his wife, Ellen is still the only person she has told about her Alzheimer’s. Two and a half years ago, Ellen had a stroke while visiting her daughter in Nashville. She was in the hospital followed by rehab. Several months passed before she moved into assisted living in Nashville. Although we visit her almost monthly, it is not the same as having her in town. In addition, Ellen’s speech was affected by the stroke, and it is very difficult to understand what she is saying.

I should add that Kate has had three other close relationships since we have lived in Knoxville. One of those died quite a few years ago. Another, Ann Davis, moved out of state for a number of years. She and her husband now live in Nashville. We often stop to see them when we are there to visit Ellen. The third close friend moved to Arkansas following her marriage after the death of her previous husband with whom we were also close friends.

There is one other social connection that was important to Kate but is now broken. That’s PEO. She had been involved with them for more years than I remember, At one time she was their chapter’s President. She frequently hosted meetings in our home and was occasionally in charge of the program. She was never close friends with any individual members, but she enjoyed and respected the members and valued PEO’s mission. She was especially supportive of PEO’s grants and scholarship program for women to attend college. Over time Kate’s memory of the members began to fade. That was especially true since they only meet once a month. The result was that she no longer felt comfortable going to meetings. For a while, I encouraged her to go, and she agreed to do so. Eventually, I sensed that when she was with other members, the conversation didn’t involve her as much. She didn’t know who was talking or grasp what they were saying. She simply couldn’t keep up. One time when I reminded her of her next meeting, she told me she had resigned and wasn’t going anymore. I never pushed her after that. I spoke with one of the past president’s who had been sending me all communications since Kate did not read her email. I informed her that I thought it best if Kate resigned. She suggested that she simply go on inactive status. I agreed to that. We still pay her annual dues as well as making a contribution to their annual fund drive, but Kate is no longer involved.

This is a sad story. Kate, who had had several very strong social connections, now found herself without a close friend in Knoxville. I know that she is not the only person with Alzheimer’s who has faced this problem. It can be hard to avoid and requires some initiative and creativity. The good news is I have found ways to address her isolation. I’ll say more about that later.