Posted on

The Sitters, Music, and YouTube

What Kate and the sitters do has changed since I first engaged them a year and four months ago. That was a time when Kate and I were accustomed to going to Panera more frequently. We went almost every morning and some afternoons. When I arranged for a sitter, I bought a Panera gift card and told Kate and the sitter that they could go to Panera anytime they wanted. I remember how Kate’s eyes would light up when I said that. She looked at Panera as an outing. That was true even when it was just the two of us. With the sitter, I think it was also a way of breaking up the time until I returned.

That worked beautifully for almost a year. It began to change when Kate started sleeping later, and we weren’t going to Panera as often. I might have guessed that would make an afternoon trip even more appealing, but it didn’t. Like many things, I am not sure why. When I returned home, I often found that Kate was resting or had rested a lot while I was gone. That bothered me because I felt she wasn’t getting enough stimulation.

At the same time, I was looking for other ways to entertain Kate in the evening when we returned home from dinner. Our regular routine was for me to watch the evening news while she worked jigsaw puzzles on her iPad. I wanted her to have something else to entertain her, especially since she was beginning to have difficulty working her puzzles. I bought about ten DVDs of musicals that I thought she might enjoy. We would watch about an hour a night. Watching musicals like Les Misérables and Fiddler on the Roof could easily take us six nights. Kate loved it. She clearly has favorites. We watched Les Misérables seven times in one seven-week stretch last summer.

As I became more concerned about Kate’s time with the sitter, I decided to try the DVDs when the sitter was here. That also worked well. It was entertaining for both Kate and the sitter. I liked the idea of their engaging in something together even if it was a passive activity.

Gradually, I expanded the musical performances we watch at night by going to YouTube. Their selections are endless and growing all the time. The key is finding something that Kate will enjoy. During the fall, that meant a lot of Christmas music. I also discovered that The Tabernacle Choir seems to have one of the largest libraries of music videos. There are plenty of others as well. I often search for a particular singer, for example, Julie Andrews, Barbra Streisand, Sarah Brightman, Andrea Bocelli, The Three Tenors, etc.

My next step was to set up the YouTube videos for the sitter and Kate to watch. That has also worked well. One time during the Christmas season, I had set up one of the Christmas videos by the Tabernacle Choir. It was about an hour in length. I told the sitter she could turn it off at the end of the program. I also mentioned that if she didn’t, it would continue with other videos. When I got home four hours later, they were still watching Tabernacle Choir videos. They hadn’t stopped the entire time I was gone. They were both happy.

Since then I have been preparing something for them to watch at least once a week, sometimes more. Yesterday was one of those days. I selected a Bill Moyers documentary about the hymn “Amazing Grace.” It was about an hour and twenty minutes. As I have done before, I told the sitter that she could turn off the TV after the program was over or let it roll over to other videos. When I got home, they were both still watching the videos. “Amazing Grace” was over long before. They were now watching musical flash mobs. This is something I hadn’t thought about. If I had, I would have probably searched for them. Instead, they had simply come up according to the algorithm used by YouTube.

Mary told me that Kate rested a couple of times during the videos but kept coming back. I suspect that was a result of her liking some more than others. The important thing is that I have found a source of amusement for Kate apart from her iPad. The bonus is that it also helps her pass the time while I am gone. At the moment I am not planning to have a video every time the sitter comes, but once or twice a week might work well.

Posted on

Follow-Up to Yesterday’s Shaky Start

As Kate had wanted, I went back to the bedroom to wake her about 10:30. Although she was sound asleep, she woke up easily. I reminded her that she had asked me to wake her, something I don’t recall her doing before. (I jumped on that opportunity.) She was a little groggy but got right up with a little help. I walked her into the bathroom for her shower and turned on the water. As she took off her night gown, she asked my name. I gave her my name but didn’t mention that I am her husband. She didn’t ask.

When she finished her shower, she asked if she could lie down a little bit. I told her that would be fine. She asked me to come back and get her up. I came back about twenty minutes later. She got up willingly and asked about her clothes. I picked them up from the chair where I had put them earlier and put them beside her on the bed. I gave her a bra and said, “Let’s start with this.” She looked at it strangely. I explained that she could put it on over her head just like putting on a top. I told her it was easier than most bras. She looked at me and said, “How do you know so much about bras?” I chuckled and told her that I had observed her having some difficulty with her other bras that fasten in back and went online to find something easier. I found a company that makes clothing for seniors and ordered several of them.

Although she asked my name off and on throughout the day, she seemed to know that I am her husband. Again, I didn’t ask, but we did talk about her parents and our children. We relaxed at home in the family room after lunch. About forty-five minutes passed. Then she asked, “What is your full name?” I told her. She asked me to repeat it. I did and said, “I’m your ‘Hubby.’” She laughed, not in a way that suggested she didn’t believe but just the opposite.

She continued to work on her iPad for at least another hour before deciding to rest. I thought that was a good idea since we were going to an opera (Tosca) last night and would get home late. This was only the second time in about a year that we have attended an evening event this late. All the music nights at Casa Bella begin at 6:00 and end around 8:30. The opera started at 7:30. We didn’t get to bed until 11:30. That’s a good bit later than our normal routine.

I had been looking forward to the opera and enjoyed it; however, Kate’s experience and mine were quite different. We bumped into a number of people in the lobby we have known from various places around town. I enjoyed seeing everyone, but I think it was a bit overwhelming for Kate. She didn’t appear to recognize anyone. Fortunately, each of the encounters was brief. We were seated beside and behind people we knew. Kate talked with them at the intermission.

When it was over, she was eager to get home. She said she hadn’t been able to understand anything and had “just tuned out.” She said she enjoyed the music but didn’t know what was going on. That fit with my impression during the performance. Several times she responded enthusiastically to a number of the arias. Often she is able to enjoy various performances whose plot she can’t grasp. That happens when she can enjoy the characters or situations in which they are involved. That wasn’t the case last night. In two weeks we are going to see the Live in HD at The Met’s production of Carmen. That will be a good test. If she doesn’t enjoy that, live opera may soon be a thing of the past, not because of the music but a lack of understanding of the plot. I am hopeful that she will continue to enjoy opera night at Casa Bella for quite a while. In that case, the focus is on the music itself.

Posted on

A Nice Visit with Ellen

I try to arrange for us to visit about once a month with Kate’s good friend Ellen who lives in a memory care facility in Nashville. Our last visit was the Saturday before Christmas. On Friday, I realized that we are going to be tied up the next three Saturdays and scheduled a trip to see her yesterday. It was a day when everything seemed to go well. Kate surprised me by getting up around 10:30. That gave us time for lunch and still get away before 1:00. That gets us to Nashville later than I would like, but that works best for Kate.

The visit with Ellen was a good one. We chatted for about an hour. That is challenging because it is more difficult to understand her with each visit. We could only understand about  a quarter of what she said. Fortunately, her mind is clear enough to understand us. We ask lots of “yes-or-no” questions. She either speaks the words or nods to answer. Her son is a Facebook friend who went to Clemson. I brought up some of his recent posts that included photos of his children and his trip to the Clemson/Alabama game. She enjoyed seeing those.

As we have done on our visits over the past six months, I played some YouTube videos of musical performances. Yesterday I focused on opera. She wasn’t familiar with Kristine Opalais and Jonas Kaufmann, so I played several arias and a duet of theirs. She was entranced, and so was Kate. It’s a very touching experience for the three of us. Ellen and her husband, Gordon, were neighbors of ours in the early 1970s. Our children grew up together. We celebrated many birthdays, holidays, and other special events together. Ellen was Kate’s closest friend in Knoxville. After Gordon’s death in 2013, Kate and Ellen became even closer. They had lunch together every Monday while I was at Rotary and got together at other times as well. Ellen’s stroke almost three years ago changed both their lives. With Ellen’s limited ability to communicate, music has been a powerful way for us to connect. It is truly an emotional experience. Kate was moved to tears through much of the music yesterday and frequently reached out to grab my hand. It will no doubt become even more difficult in the future as both Ellen and Kate decline. In the meantime, I intend for us to continue our visits and sharing a connection that only music can provide.

Posted on

Some things work out without much effort on my part.

Although I try to avoid or minimize making any morning obligations, I have not eliminated them entirely. One of those occurred last week when I had to go for my labs at the doctor’s office. Another occurred yesterday. I had made plans to take Betty Shiffron, a church friend, to see La Traviata at one of the Live in HD at the Met performances. Kate and I usually eat at the Bluefish Grill on Saturday, and it is short walk to the theater. The last time we did this was in the spring just before Kate began sleeping so late in the morning. I told Betty we would pick her up shortly after 11:00 unless Kate were having any trouble getting up. I was concerned that I might have a problem, so I decided to start early. When I went to the bedroom around 9:00, I found that Kate had already gotten up. From there it was smooth sailing. We even had enough time to get her a muffin at Panera before leaving for Betty’s house.

We had a very pleasant lunch although it seemed to be a more challenging experience for Kate than I expected. She wanted to be engaged in the conversation but had trouble understanding what we were talking about and remembering things we had already said. Quite a few times, she said things like, “Who are you talking about?” or “What are you talking about?” It didn’t present a problem for Betty and me, but I felt sorry for Kate. Betty is not as accustomed to being with Kate and is not as sensitive about her difficulty following conversations. It was a “sink-or-swim” experience for Kate.

The Live in HD at The Met performances significantly increased Kate’s enjoyment of opera. Although we had attended operas before then, I think she went more for my benefit than hers. Seeing opera on the big screen with the camera work that brings the viewer up close has made her enthusiastic. She has changed a lot since the spring, and I wondered how she would respond. Several years ago I had a “walk-on” role in La Traviata when a European opera company came to Knoxville. In addition, Kate and I attended a performance of the opera in Zurich during our last international trip in 2015. I didn’t expect her to remember the opera, but I did hope that she might recognize some of the music. She did enjoy the music, but the overall experience was not what I had hoped. She was very confused about what was going on. During the first intermission, she wanted me to explain it to her. It was simply too complex for her to grasp.

This was a good illustration of the fact that the intuitive” part of her mind still values “rational” thinking. I had wanted her to focus on the music which I knew she could enjoy and not worry about the plot and precisely what was going on. This is not something that is new at all. That is what is behind her efforts to know people’s names, where she is, and what they are saying on the news. It is easier for me to let go and let her enjoy life through her intuitive abilities than it is for her. Situations like this are good reminders to me that there is an intersection of the rational and intuitive processes.

After the opera, Betty wanted to take us to get ice cream. When we entered the shop, there were only a couple of open tables. I took Kate to one and asked her to stay with the table while we ordered. While we were in line she left the table and approached us. She never went back to the table. I’m not sure whether it was a result of confusion over what I had asked or that she felt more secure being near us. I think she was confused. I do know that she frequently is confused by almost any instruction she is given.

Similarly, at dinner I asked her to take one of two tables while I went to the counter to order. She wanted to go with me. When we walked to the counter, she wanted to go to a table. This is also a common occurrence. At one moment she wants one thing. The next she wants something else.

As I mentioned in a recent post, she is beginning to have trouble with words in her speech. Last night as we left dinner, I played a CD in the car. She said, “They wear this a lot.” I said, “What?” She said, “This song. They put it on a lot.”

Despite these things, we had a very nice day. Being with Betty was also good for both of us. She is 90 and quite fit and very active. She is also a big talker and speaks quickly. She also walks quickly. It was a good finish to a week of social and musical experiences.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.”