Another Christmas Celebration

The Christmas season has always been special for Kate and me. This year is no exception. Kate, of course, can’t have the same perspective. She doesn’t recognize it as a season, but that doesn’t take away from her pleasure. She enjoys each individual experience even if she can’t recognize and remember that it is the Christmas season. I know that we may not be able to enjoy the season in the same way next year, so I am savoring every moment and trying to make each one special.

We attended our first Christmas event the last of November with a luncheon with the seniors at our church. Since returning from Texas, we have played a lot of Christmas music and watched quite a number of Christmas concerts on YouTube. In addition, a good bit of the music I play at home is music of the season. Last Thursday at opera night at Casa Bella, one part of the program featured Christmas music. We were back at Casa Bella on Monday night for their annual Christmas dinner that also included a program of music. We will attend jazz night tonight. I am sure we will hear more of the same music in a different style.

Everything we have experienced until last night has involved traditional music. We joined friends at the Flat Rock Playhouse in North Carolina for a Christmas program featuring Asleep at the Wheel. Quite honestly, I had never heard of the group until a couple of months ago when a couple we met at Broadway night told us about them. Knowing that Kate is from Texas, they thought it would be something they would enjoy. I was hesitant but accepted their invitation thinking that Kate might like it and that it would be a good social occasion for both of us. I am glad I did.

For those of you who, like me, haven’t known about this band before, I should let you know that they are an Austin, Texas, band that has been around since 1970. Ironically, they started in West Virginia. They have won 10 Grammy awards over that time and have had quite a number of big hits and albums. Like all the other groups of that age, they have only one of the original members with them, their lead singer. The other members are all on the young side. That adds a good bit of vitality and quality to their performance, but it is still a classic Texas-style band. Even when they play traditional Christmas music, it has a Texas flavor.

Given that description, you might expect that it is not my kind of music, and I would say that it isn’t the kind of music that I would play at home. On the other hand, Kate and I loved it. We found the group to be very likeable personally and the rhythm of the music engaging. I found myself tapping my feet throughout the performance. Every time I looked at Kate, she was smiling. It was a good night to let your hair down and enjoy the season.

This will go down as a unique Christmas event for us and an interesting complement to the other seasonal events we are enjoying. It was also another reminder of the power of music to stir one’s emotions. The night before we had watched a memorial service with Itzhak Perlman and the Pittsburgh Symphony. They were honoring the memory of those killed at the Tree of Life Synagogue. It was a moving performance. The emotions aroused by that concert were quite a contrast with those we experienced last night. No wonder music has such impact. It has the ability to stir so many different feelings. It has touched our lives in many ways, and I expect it to do so in the future.

It began with a scream and ended with music.

About 4:30 yesterday morning, I was awakened with a loud scream. Kate had a bad dream. She was unable to tell me about it but was very frightened. This was a time to comfort her. I held her and told her she was all right, that she was safe and that I would take care of her. She calmed down and dosed off within fifteen minutes.

This was not the first time she has had a bad dream. Fortunately, they don’t happen often. Most of the dreams I have been aware of have been good ones. Until the past couple of years, she would talk while dreaming. They were always in a situation in which she was teaching children. I could easily see this as an outgrowth of her years as a school teacher and librarian/media specialist.

I stayed in bed until 5:10. I decided to let Kate sleep. She had responded so well to Valorie’s getting her up, showered and dressed last week that I felt comfortable letting her take care of her again. Before leaving, I told Kate I was going and that Valorie would take care of things. She seemed perfectly comfortable with that, and I left feeling good.

When I returned later in the afternoon, Valorie and Kate were in the family room having a serious conversation. They were talking about students and teaching. At least Kate was. Valorie appeared to be listening. I was pleased to see they were getting along well. They were talking as two friends might do. I am still surprised, but glad, that Kate is willing to let her help with her shower and getting dressed.

We ended the day with an annual Christmas dinner with music at Casa Bella. It was a wonderful evening. The meal was outstanding, and the conversation lively although it was hard for Kate to keep up. She couldn’t hear or understand much of what was being said. She frequently asked me to tell her what people had said. As I have been doing lately, I cut her meat (a very tender beef tenderloin) for her. That is something new within the past couple of weeks.

This was another bitter sweet occasion for me. I can’t predict the future, but I know that next Christmas will be very different from this one. I am glad that it went well. Kate and I both loved the music, and we ended the evening singing Christmas carols. We don’t know most of the sixty or guests who were there, but we are accustomed to seeing them for these musical nights throughout the year. It was a beautiful shared experience for everyone.

Two Personal Experiences with the Power of Music

When I checked Twitter this morning, I saw a tweet about music and its “profound power, particularly when it comes to memory.” This observation is now commonplace among those who write about dementia and those who live with it. Kate and I have always been drawn to music. Our first date was to a performance of Handel’s Messiah. We have attended many musical events over our marriage. Regular visitors to this blog know that we have binged on music since her diagnosis. I don’t believe, however, that I have ever mentioned two early experiences that Kate and I had that illustrate the impact that music can have on people whose brains have been damaged through stroke and/or dementia.

The first occurred with Kate’s father in the Fall 1989. After experiencing a stroke on Veterans Day, he didn’t speak. Knowing that the stroke had damaged his brain, we wondered what he was able to process. Did he recognize us? Did he understand what we were saying? How was he feeling?

On a Sunday morning not too long after his stroke, we were visiting him along with Kate’s mother who turned on the television to the Sunday morning service at the family’s home church where her father grew up. Not long into the service, a longtime friend and member of the choir sang a solo. We looked over at her father and tears were running down his cheeks. I still choke up when I recount this story. It was a sign to us that although his brain had been damaged, he could still connect with us in some way.

The second story involved Kate’s mother. She, too, had experienced a stroke that affected her speech but not to the same extent. She didn’t speak much and that diminished over time. She hadn’t been able to attend church for at least a year or more. On one of our last visits with her in Fort Worth, Kate asked her mother’s pastor if he could come to the house to serve home communion for her mother.

He came out that Sunday afternoon. We sat around a table on the back porch where he conducted the service. At the end, he said, “The Bible says, ‘And then they sang a hymn.’” Then he led us in “Amazing Grace.” As we sang, we noticed her mother singing as though she did it every day. When we finished, she spoke right up and said, “I think we need something to break the solemnity of this occasion.” She burst into a children’s song. I think it was “This Little Light of Mine.” It was an emotional experience for all of us. Music spoke to her and through her to us. That was the last time I heard her speak or sing so well.

A Good Day

Yesterday morning, I walked into our bedroom at 11:00 to check on Kate. She looked like she was asleep but opened her eyes as I approached her. She smiled and asked, “Who are you?” I said, “Would you like to guess?” She said, “My husband?” I said, “We’re off to a good start?” She smiled. She asked my name and then hers. I told her and said I would like to take her to lunch. She said she was hungry but needed her clothes. I pointed them out to her and asked if she wanted to shower. She didn’t. That helped us get ready more quickly than usual.

She was in a good humor and showed a good understanding of my personality. As we walked out of the house, she spit on the floor of the garage. Then she said, “I know that bothers you.” I said, “What makes you think that?” She said, “You like everything just right.” I don’t say much about this, but she frequently says things about me (mostly my OCD tendencies) that are right on target. It continues to amaze me that her feelings for people and things are so strong even as her memory fades.

At home, in the car, at lunch, and the balance of the day, she frequently asked, “Where are we right now?” As I have said before, this is a common experience. It just occurred more yesterday.

The weather this week and next is supposed to be cold, so I wanted to get her a couple of new sweaters. I took her to a department store not far from the restaurant where we had lunch. I had mentioned this before lunch, and she frowned. She doesn’t care much for shopping. It could be that it is too confusing for her to look at her options and make a decision. After lunch I didn’t tell her where we were going. I just drove to the store. We got out and went directly to the sweaters. I picked out three things in the right size and asked how she liked them. They were fine. She wasn’t excited about having new clothes, but I felt better than we have more options now.

We had dinner with friends we had met at Casa Bella on their Broadway nights. We have gotten together with them on several other occasions. Kate was less active in our conversation than the three of us, but she enjoyed herself. We will be with them this coming Monday night at Casa Bella for their annual Christmas dinner and again next Wednesday for a concert a short drive from Knoxville. It’s good for both of us to expand our social connections.

When we got home, we watched a series of YouTube videos of Christmas music sung by the Tabernacle Choir. She was enthralled by them. When I turned off the music, she talked about how much she enjoyed our being able to share in the music together. As I helped her get ready for bed, we had another special moment. She thanked me “for all you do for me.” She said she thought we were a good match for each other.  It wasn’t until she said, “I think we are going to make a good team.” that I realized she was talking as though we were not married but anticipating it. She was optimistic about our future together and stumbled over her words. I said, “Do you mean ‘mature together?’” She said, “Yes, we’re going to mature together.” Then she mentioned that she was going to want children and thought I felt the same way. As we got into bed, she said, “This is the first time I have felt like a real grown up.” She continued to talk about how good she felt about us. It was interesting that she never asked my name, her name, or the names of her parents. She was absorbed in our relationship, and so was I.

Our Trip to the “Doc-in-a-Box”

The other day I wrote about Kate and conversation and mentioned that I wondered if she might not have a buildup of wax in her ears. This has been a persistent issue for her since childhood. Yesterday seemed like a perfect time to find out if wax had been a primary source of her hearing problem. On one other occasion, I took her to a local clinic (Doc-in-a-Box) to have her ears washed out. Since then, I had learned that you can go online and book an appointment. They will call you thirty minutes before they are able to see you, so that’s what I did. It was interesting that they ask if this was something that would require a nurse or a doctor. I indicated a nurse figuring that would make it easier to get in.

Except for a brief sign-in procedure to update our/their records, we waited only a few minutes. In less than ten minutes, they checked Kate’s vitals and put us in an examination room. Shortly thereafter, a physician’s assistant came into the room to take a look at Kate’s ears. She quickly discovered a good bit of wax in both ears. She left and someone else came in to handle the task of cleaning it out.

The interesting part of the experience was Kate’s response. After the PA came in and introduced herself, I introduced myself and said, “This is my wife, Kate.” To my surprise, she said, “And I am smart. <pause> That’s what my mother and daddy tell me.” Later, during the examination, she repeated that she is smart.

Once she was on the examination table and the PA started to look into her ears, she became anxious. She wanted me beside her and to hold her hand. Both the PA and the person who did the cleaning were very gentle and non-threatening, but the exam itself scared her. This has to be another consequence of her Alzheimer’s. Even though I told her where we were going and why, she couldn’t remember where we were or why. This was only the second time we had been in this office, and that was three or four years ago. In addition, she didn’t seem to understand the instructions she was given. For example, when she was asked to lie down on her side so the attendant could put drops in her ears, it was very difficult for her to understand. I wonder now if part of the reason was that her ears were blocked up.

After she had gotten the drops in one ear, she had to lie on her side for fifteen minutes. Then the attendant came in to “irrigate” the ear and put drops in the other ear. Once again, I could see the power of music. She wasn’t fully at ease yet, so I got my phone out and played one of her favorite songs, “Send in the Clowns” from A Little Night Music. She loved it and seemed to relax. I was surprised that she was able to mouth some of the lyrics before they were sung. From there, I played a variety of songs from folk to opera.

It took a little longer than might have been expected because they weren’t able to remove all of the wax on the first try. Kate got a little restless, and several times, she asked when we could go. While we were waiting, she asked, “Who are you?” I told her I was her husband. As frequently happens, she was surprised and didn’t believe me. A few minutes later, she asked, “Are you my daddy?”

As we were about to leave, the PA asked what we were doing for Thanksgiving. I told her we were going to Texas to be with our son and his family. Kate said, “What’s his name?” I am sure the PA understood the situation. Their records should have shown that she has Alzheimer’s. To make sure, I told the attendant who took Kate’s vitals. As I said earlier, they were very understanding.

Music and Time with Friends

After returning from the museum yesterday, I decided to make dinner reservations at Casa Bella. I knew it was one of their Broadway nights and that they were having another performance of the music from Les Miserables. We had already seen it once, so I wanted to see if we could eat in the front room that is separated from the music. To my surprise, they told me that I had reservations for four people in the room with the music. At first, I started to decline. Then I thought it might be fun to go and take someone with us. We’d been to dinner with Angela and Marvin Green a couple of weeks ago and have talked with them about the music nights at Casa Bella several times. I called, and they were able to go with us.

Kate and I had a wonderful time. Both the conversation and music were “as good as it gets.” It was a lively audience. That meant it was noisier before the music started. That didn’t prevent our own lively conversation. I do think it was harder for Kate to understand what was being said, but she enjoyed herself as much as the rest of us. She was moved by the music and expressed her joy audibly though softly enough that only those seated close to her could hear.

It was a day that could have been an ordinary Thursday, but it turned out to be special. The visit to the museum and the dinner and music with good friends were the highlight. I make a point of this because so many of my recent posts have focused on Kate’s decline, and I like to communicate that we continue to enjoy life. I don’t mean to minimize the sadness that accompanies Kate’s Alzheimer’s, but the stimulation of getting out as much as we can makes a significant difference in how well we are able to adapt. It works.

After dropping the Greens off at their home last night, Kate said, “Are we legal?” I said, “Do you mean ‘Are we legally married?’” I told her we are, and she said, “Good.” Later, when we got in bed, she said, “I love you.” I said, “And, we’re legal.”

Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

No Wake Up Call Necessary Yesterday

After having to wake her for five consecutive days, Kate got up on her own shortly after 10:00 yesterday. About 10:45, I checked on her and found that she had taken her shower and gotten back in bed. At 11:20, I checked again. She was still in bed and said she needed clothes. When she went to take her shower, she had her clothes in her arms. I went to the bathroom and brought them to her. She asked for her underwear. I couldn’t find them but knew that she had them earlier. I pulled back the sheet where she had been resting. There they were.

I went back to the bathroom to straighten up. She had used the two bath towels I had  out for her, but she had gotten into the drawer where I keep the wash cloths and hand towels. She had pulled out several of each that were thrown on the floor.

She put on her top. I reached up and straightened it for her. She shrugged and said, “You have to remember that I am capable of some things.”  As she started to put on her shoes, I was about to leave. She said, “Wait a minute. Don’t leave until I tell you.” These words sound harsher in written form than they were to me. She was trying to say, “I might need your help.” I stayed for a few minutes. When she appeared to be getting along fine, I said I was going to the kitchen. She didn’t stop me. A few minutes later, I heard her say, “Hey.” When I got to the bedroom, she wasn’t wearing her pants. She didn’t say a word, she knew I would understand. She couldn’t find them. I walked over to the chair in which she had been sitting and picked up the pants and gave them to her. She gave me a sheepish look and said, “Thank you.” For the rest of the day she was fine.

Since it was past noon, we skipped her muffin at Panera and went directly to lunch. Afterward, we came home for about forty minutes. She took that opportunity for a nap. She seems to have been tired all week, but not necessarily at bedtime. It makes me think about her sleep patterns as a sign of significant change. This started at the end of March when she started sleeping later in the morning. Since then her sleep as been erratic. She definitely gets up later than she used to, but once every week or so she surprises me and gets up early. That hasn’t happened over the past week.

Her sleep pattern has been accompanied by greater memory problems, confusion, greater dependence on me, and minor discomfort at my leaving her with a sitter. I know greater change is ahead. I just don’t know how quickly it will occur. If the current decline continues at the same pace, I am afraid it will be sooner rather than later. We are now less than four weeks away from our trip to Texas for Thanksgiving. Despite the changes that are occurring, it seems to me that we will be able to make it.

I have detected another minor change this week. Until the last day or two, she has called me by name when I was in another room and she needed something. Several times this week, she has just said, “Hey.” I take that as a sign that it is getting harder for her to think of my name. That would not be a big surprise. I have been well aware that she can’t remember my name most of the time. It’s just that she has been able to remember when she needs something. That may be going away.

Although she still asks me my name, her name, and the names of our children, she is more frequently asking, “Where are we?” This is something she done for a long time. It’s just happening more frequently. Coming home from Casa Bella last night, she asked me several times where we were.

Speaking of Casa Bella, we were there for Broadway night last night. This was a more spectacular program than others we have attended there. That’s an overstatement since the only accompaniment was a keyboard, no sets, and singers used music. There were, however, six singers instead of the customary two. All the music was from Les Miserables. Regular readers will remember that this is our favorite musical, and Kate was as taken by this production as she has been by the 25th anniversary concert in London. While there is no comparison between last night’s program and that one, the music is always good, and the singers were outstanding. Kate responded with tears and soft, but audible, Continue reading “No Wake Up Call Necessary Yesterday”

The Power of Music (Again)

As Kate loses more of her memory and experiences more confusion, I am happy to say that music continues to be uplifting for her and, of course, for me. I enjoy both the music and seeing her derive so much pleasure. It has led me to experiment a little more. As I mentioned in a previous post, I replaced a DVD of Sound of Music when she didn’t put down her iPad to watch. I wondered if she would respond differently to Les Miserables, her (and my) favorite musical. She responded immediately by putting down the iPad and watching intently. Last night, I picked up where we left off the previous night. Once again, she was quickly engaged. Periodically, she audibly expressed her pleasure. At one point she said, “I know we’ve seen this before, but I’m enjoying it just as much as this time.” That was the first time I recall her indicating that she had seen it before. I didn’t tell her it was the seventh time in the past seven or eight weeks.

Incidentally, I believe it is more than the music itself that causes Les Miserables to have such an impact on her. That musical is sometimes referred to as one of the most operatic of Broadway musicals. That is because virtually all the dialogue is sung the way it is in operas. That is especially true in the concert version that we have been watching. The production moves continuously from one song to another. That way she doesn’t get lost in the plot. All the other musicals we have are traditional in that there is a lot of dialogue in between songs. She can’t follow those. Thus, she can’t appreciate that part. Les Miserables allows her to simply enjoy the music without worrying about the plot at all.

In the past week, I have applied music to two other situations. The first is in the morning about 15-20 minutes before I would like her to get up. I’ve played a Joshua Bell album of very soft, melodic music. Yesterday, I asked if it bothered her. She said, “No, I love it.” It also seems to have the effect of gently waking her. I make sure that the volume is not too low, or she might sleep even longer.

That leads to my second experiment. I’ve always liked playing music at bedtime, but she has usually asked me to turn it off. The past few nights I have played an album of Russian sacred music. I had the volume turned down very low, but she noticed. She said, “That’s beautiful music. I like it.” It is ideal music for meditation, and I am hoping she finds it a relaxing way to drift off to sleep.

I have always told Kate that if I ever had a stroke I wanted her to make sure to play music for me. I went so far as to say that I was going to write down types of music and specific albums to play at different times of the day. I’ve never actually done that, but the advent of the iPod gave me the idea of storing my entire music library on one and creating the appropriate playlists. Now that technology has evolved even more, I do have my entire library on my phone. The funny thing is that with streaming there is little need for that. I still haven’t created those playlists, but I’m a lot closer to getting there. I never guessed that I would be playing music for Kate rather than her playing for me.

Much has been written about the power of music with people with dementia. I don’t need any formal studies to prove it to me. It has been great therapy for both of us.

Kate and Music

Yesterday’s musical experience with Ellen had gone so well that after we got home last night, I turned on our TV to YouTube. I did a quick search of several other types of music videos we might enjoy with her or just for ourselves. I noticed a performance of Dvorak’s “Symphony from the New World” by the New York Philharmonic. I’ve loved it since I was introduced to it in our high school band and orchestra. I turned it on while Kate was working jigsaw puzzles on her iPad. In a few minutes, I noticed that she had put the iPad down and was absorbed with the music. It was 43 minutes long, and she watched the entire performance and loved it.

I’ve often mentioned that music has played an important role in our marriage starting with our first date. I don’t believe I have ever said that Kate’s musical tastes have always been narrower than my own. She has always enjoyed some classical music, but it has been limited to a few familiar works. We have had season tickets to our local symphony since the late 1980s. She has always attended because I was drawn to the music. She was not. In recent years, she has been even less enthusiastic. I think we attended only one concert this past year. The primary reason is that she is often tired after dinner. Except for our music nights at Casa Bella that start at 6:00, we haven’t scheduled anything at night in a long time.

Given that she hasn’t enjoyed classical music as much as I do, I’ve been somewhat surprised and pleased that she now seems to enjoy a much broader range of music like the Dvorak symphony she watched/listened to last night. Even more surprising is her appreciation of some of my favorite sacred choral music. She has never liked what she refers to as my “monk” music. Just yesterday, I played an album of sacred music by a Russian choral group and asked how she liked it. She said, “It’s beautiful.” I couldn’t believe it.

I’ve begun to wonder why the change. Could it be that its because she has heard me play so much classical music over the years? That would be a reasonable guess and, perhaps, the correct answer. On the other hand, could it have something to do with her Alzheimer’s. Maybe she has become more dependent on music as she has lost her ability to engage in other types of pleasure like working in the yard or working on photo albums on her computer.

I don’t think I will ever know for sure, but I am inclined to think that our binging on music since her diagnosis has led to a greater appreciation of a broader range of musical genres. We’ve been attending opera night at Casa Bella for most of the time since her diagnosis. The same is true for attendance at both the Live in HD at the Met productions and live opera performances as well. In addition, as part of my own therapy, I play music virtually the entire time I am at home. Thus, she has been exposed to music more than ever before. To me, the “why” is not so important. It’s just something I wonder about. The best thing is that we are enjoying more music together than every before.

I should also add that she doesn’t like all music. She frequently comments about the music we hear in restaurants. She tends to prefer softer more melodic music. That includes a lot of older songs and ballads and songs from popular musicals. I am sensitive to these preferences in my own musical selections. It seems to work for both of us.