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I love it when things go well with the sitter.

Recently, Kate has indicated that she likes being with me and that she feels “safe” with me. I suspect that she means something more than safe. I think she is expressing her dependence on me. She feels secure with me because she can ask me anything. I don’t  believe she feels the same way with our sitters. Several times lately, she has given me a scowl as I left her with them. She has been very careful not to convey this to the sitters themselves, at least when I am there.

Yesterday, when I got back from Rotary and a meeting at the Y, I found Kate and Anita sitting on the sofa in the family room going through one of her family photo books. This one focused on her mother’s family. While I was bringing in some things from the store and looking at our mail, the two of them continued for another ten minutes. They both seemed to be happy. That really made me feel good.

A little later at Barnes & Noble, Kate was working on her iPad when she needed help with several of her puzzles. This was far from the first time, but the specific problems suggest how difficult they are getting. She gave up on two of them and let me finish them for her. On another, she had only three pieces to complete the puzzle and was stumped. This is a 16-piece puzzle, so the pieces are large. One of the pieces was a corner. I showed her the piece and explained that it had two flat sides and would have to go in one of the corners. Then I showed her the three corners that were already filled and pointed to the empty space at the bottom right corner. I told her the piece would go in that spot. She didn’t understand. I put it in for her.

Next, I showed her the empty adjoining spaces and the two pieces that would go there. She couldn’t tell which one went where. This must be getting frustrating for her. I do hope that she doesn’t have to give up her puzzles.

It wasn’t long before she asked my name. I told her. She started to repeat it. Then she said, “Tell me again.” I told her. Within minutes, she asked again. I told her. She asked again. I told her again. Then she said, “And I am?”

We went straight from Barnes & Noble to Chalupas for dinner. Then we came back home. She went to brush her teeth. When she didn’t come into the family room, I looked for her. I found her in the hallway. I said, “There you are. I was looking for you.” She said, “Where do you want me?” I told her our bedroom and that she might want to get ready for bed. She asked me to get her something to wear. When I got back to her room, I found that she had been in bed in the guest room next to our bedroom. It was obvious that she had gotten confused about where she was to go.

At dinner, she told me she was tired and not likely to last long. She was right. She called it a night just before 9:00. Before she got to sleep, I walked into the bedroom humming something. She laughed and said, “You’re cute.” Then she said, “What’s your name?” And then, “What’s my name?” A few minutes later she said, “Where are we?”

It was a nice day, but I really wish she didn’t have to go through this.

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A Nice Day, But More Confusion

Kate surprised me by getting up early yesterday. She has always been slow to wake up, but I notice more confusion upon waking now. I walked in while she was brushing her teeth. Her first words to me were, “Who are you?” I gave her my name. Then she said, “What’s my name?” When I told her, she said, “You got it.” Then I wasn’t sure if she was just playing with me or if she really didn’t remember her name.

I think her confusion is why it takes her so long to get ready in the morning. Just taking a shower (usually short) and getting dressed sometimes takes over an hour. It often takes her longer to dry off after a shower than to take it. Since I am selecting her clothes, that doesn’t require much time except when she decides to wear something other than what I have chosen. The difficult part is getting the clothes on the right way. In the morning, I usually let her do that on her own. At night, however, I am usually with her when she undresses and puts on her night gown. It is not unusual for her to ask for my help. I see how challenging that is. That leads me to imagine greater difficulty getting fully dressed. I have started checking on her when she is getting dressed and ask if she would like my help. Sometimes she says she would. Most of the time, she likes me to leave her alone to take care of it.

Because Kate was up early, we got to Panera for the second day in a row. We were a little late, however, to see many people we know. Only two of the group from the Catholic church were there. They told us they had had a big crowd that morning.

At lunch, I said something that I wish I hadn’t. Our server asked us if we had done anything special during the week. At first, I said no. then I said, “Well, we watched Les Misérables for the seventh time in about seven weeks.” Kate was surprised. After the server left, she asked, “Did we really watch it seven times?” I told her we had. Then she said, “How could I forget that?” I said, “I don’t know.” Nothing more was said, and I saw no sign of any lingering concern on her part. I do wish I hadn’t said that. I don’t like to do anything that might cause her any additional anguish.

During our meal, Kate said she was tired. I thought that she might rest when we got home, but she didn’t. We spent the afternoon there. Late in the afternoon, we called our oldest grandson, Brian, who was 20 yesterday. Before we placed the call, Kate said, “I’ll just let you talk to him.” I don’t ever recall her saying anything like that before. I suspect it is another reflection of her insecurity. She is quite aware that her memory is poor. It does make conversation more difficult for her. We had a nice conversation with him and then talked with our granddaughter as well.

After the called ended, I asked if she would like to go to Barnes & Noble. She said, “What would we do there?” I told her she could work on her iPad. She didn’t want to go. Now that I reflect on it, I suspect she had forgotten that we normally go there to pass time in the afternoon. She seemed a little bored, and I thought it would be good to get out of the house. Instead we remained at home for another 45 minutes and then had an early dinner.

She wasn’t as chatty at dinner. She didn’t even ask my name or where we were. She was also little confused at home. She is clearly getting mixed up on the rooms and where she is to go. The previous night we had finished most of Les Miserables. I put it on and backed up about 45 minutes that we had watched earlier. Once again, she was enraptured right away. When it was over, we were off to bed. It was a little earlier than usual, but I thought that might help in getting her up this morning.

Just before 7:00 this morning, I heard her and went to the bedroom. She had just come out of the bathroom. I asked if she needed anything. She said she didn’t know. Then she said, “I think I’m supposed to go someplace.” I told her I couldn’t think of anything. She said, “I think it was to get my hair done.” I told her that wouldn’t be until next week and that it wasn’t yet 7:00, so she could rest a little more. About thirty minutes ago, I started some music. She hadn’t stirred, so I sat down on the bed. She looked up, and I told her I would like to take her to lunch. She said, “Okay.” I went back again at 10:35. She was awake but still in bed. I told her again that I would like to take her to lunch. She said she would like that. Then I said, “Of course, you would have to get up.” She said, “What will I wear?” I pointed to the clothes I had put on the chair beside her bed. I told her I had the shower all ready for her and pointed in the direction of our bathroom. She looked puzzled and said, “There?” I said yes. She didn’t look like she believed that was the bathroom. I told her to come with me, and I would show her. She got up and must now be in the shower. We’re running a little late, but we will make it. I’ll probably ask Anita to meet us at Panera.

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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.

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Kate and Conversation

Over the past couple of months, Kate has been far more talkative than at any time since the first year or two after her diagnosis. We discontinued her Trazadone in late May or early June. I think that might account for the change. It doesn’t help to fret, but it makes me wonder if we should have done this a lot earlier. It’s been a long time, but I remember times when she was so tired that she kept her eyes closed when we were at restaurants waiting for our food. I used to feel a little embarrassed about what others looking at the two of us might be thinking. Did they think I had hurt her in some way? She often looked so sad. That might have been avoided if I had connected it to her medication.

Talking a lot more is not the only change. As her memory has declined, she has had less to talk about. When the two of us talk, we stick largely to how we feel about our life together as well as our families. She speaks frequently about her mother and expresses very positive feelings but very few details about her. She also feels that we are very fortunate people. Again, she can remember few details. She most often mentions how fortunate we are to have been happily married for so long and to be so proud of our children. I fill in the facts on all of these things. I tell her about her mother and father, the things we have done, and what our children are doing.

Increasingly, she is asking more questions. That was especially true yesterday. At lunch at Applebee’s, she looked at me and asked, “Are you my father or my husband?” I told her I was her husband. Then she said, “I was afraid of that.” (Yesterday was also a day when she teased me a lot.) A minute later, she asked, “What is your name?” I told her and moments later, she asked again. That was followed by “Where are we?”

Questions about our family and names of places dominate her questions, but she also asks more surprising questions. For example, shortly after asking where we were, she asked how many Applebee’s there are. That didn’t surprise me. She has asked quite a few times before though not enough for me to remember. I always pull out my phone and get the answer. It isn’t limited to Applebee’s. As you might expect, she also asks about the number of Paneras and other franchises. One time she wondered how many times we had driven on the street that leads to our neighborhood. I did some quick calculations and came up with a “guesstimate” of 40,000. She’s asked a similar question about the main road that leads from town to our house. I haven’t calculated that one.

I find it interesting that she retains some interest in news events. That occurs when I am either watching the news on TV or on the radio in the car. She picks up something that is said and doesn’t understand it. In those cases, she wants me to explain. I always try but am often unsuccessful. Those conversations frequently end when she says, “Why don’t you tell me about it later when I’m more alert.”

On the way home from lunch, she asked, “Where is our house?” I told her Knoxville, but she wanted to where in Knoxville. I gave her the name of a hospital that is near the house. That worked. Once home, she stopped in the kitchen and said, “I’ll follow you.” That is always a sign that she doesn’t know where to go.

After dinner, we spent some time in the family room relaxing. She worked on her iPad and periodically looked out on the dense growth of trees on our neighbor’s property behind our house. She loves that view. At that point last night, she may have still thought we were staying someplace other than our home as she had earlier.

After I took a shower, she came back to our bedroom where I turned on a DVD of Sound of Music that we had started earlier in the week. I thought that she might immediately take an interest, but she was more interested in her jigsaw puzzles. That led me to see if she would react differently to Les Miserables. I didn’t say a word to her. I just took out Sound of Music and inserted Les Miserables. As soon as the music came on she looked up. Shortly thereafter, she put way her iPad and devoted her attention to the music.

I was hoping to turn it off before 9:30 so that she could get to bed. When I mentioned that to her, she said she wanted to watch a little more. At 10:00, I stopped it and suggested that she get ready for bed. She agreed even though she would have continued watching for a good while. This was the seventh time we have watched it recently. Her response was as enthusiastic as it was the first time.

We were in bed around 10:15. I was the one who was ready to go to sleep. She was in a talkative mood. She talked a lot about how fortunate we had been as a couple. Although she has forgotten a lot of details, she does remember some important things. For example, she mentioned the fact that her parents and my parents had long and happy marriages. Her parents and mine really were devoted to each other. She said, as she has many times before, “The most important thing is that we have had a good marriage, and we are proud of our children.” That is interesting in that earlier in the day I had said something about our children. She said, “I have children?” The last time I glanced at the clock it was 11:00. She was still going but slowing down. I don’t remember much after that.

Although she has been more talkative with me, she is less talkative in groups. Except for greeting people when we get to Casa Bella for their music nights, she talks very little. I would have to say that it can be a challenge. We often sit with three couples. All three of the men are talkers. I don’t think, however, it is just that. She simply doesn’t remember enough things that people are talking about to make a comment. When people ask her direct questions, she usually looks to me to provide the answer.

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After Dinner Last Night

Kate had gone to brush her teeth after returning home from dinner last night. I took the clothes out of the dryer. In a minute, I heard her call to me. When I reached her, she was in the bathroom and said, “I like this place where we’re staying. It’s so spacious and attractive.” I said, “Yes, it is.” I didn’t say anything about its being our home.

A little bit later she took a seat in the family room. She looked out to the back yard and said, “This is a nice place. Look at the trees. They’re so beautiful.” I agreed, of course. Once again, I didn’t say anything to suggest that she was confused.

Before going to bed, Kate went to a bathroom off the guest room next to our bedroom. She seemed to take an unusually long time. Then I heard her call my name. When I answered, she said, “Where are you?” I said, “In our bedroom.” She said something that made me realize that she didn’t know where that was.  I said, “I’m right here.” Then I walked to the hallway where she was standing. It wasn’t until she saw me that she knew where to go. I wonder how long she had been looking for me.

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Increasing Difficulty Dressing

I checked on Kate at 8:45 this morning. She had just gotten up. In her arms she had gathered the clothes I put out for her. She was headed to take a shower. I asked if she would like to use the one in our bathroom. She said it didn’t matter, so I suggested she use ours. I got everything ready for her.

A little later I checked on her again. She had showered and was starting to get dressed. I looked in the bathroom and discovered she had used the two towels I put out for her. In addition, however, she had gotten into two drawers of other towels. She had tossed at least three different hand towels on the floor, only one of which appeared to have been used. In addition, she had pulled out another bath mat that was on the floor along with several wash cloths. She continued to dress while I took care of the bathroom.

After another 45 minutes, I checked, and she was still not dressed. She had misplaced several things and was searching for them. This is becoming common. Although I have each item laid out so that she can see each one, she seems to pick up one thing and put it someplace else. The items are usually thrown someplace so that it they can be hard to find. That is particular hard when something like black socks are thrown on our dark blue rug. It can be difficult to find them.

We are in one of those in between stages. She is already accepting my help in picking out her clothes, but she still likes to dress herself. I can understand that. I think I would be the same way. I am trying to let her do just that but checking on her periodically so that I can find the things she has misplaced. I suspect that is a major reason it takes her so long to dress. I know that some of that time is trying to identify the front from the back of her top and pants and then to put them on correctly, but some of it has to be trying to locate the things I had put out for her. We are, of course, moving toward the time that I will play a major role in her dressing. At the rate we are going, that won’t be long. In the meantime, we’ll stick with what we are doing now. I want her to retain as much independence as she can.

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An Interesting Support Group for People with Dementia

A few weeks ago, I posted a conversation that I had with Kate’s brother, Ken. In that conversation, we focused on his diagnosis of Alzheimer’s at age 70, the same age at which Kate was diagnosed. Unlike Kate, he has chosen to be more public. For example, he told his children right away. Kate has told only one person, her best friend Ellen.

Another example of being more public is that Ken joined an Early Memory Loss support group rather quickly. That was in 2014, and he is still participating. Originally, Kate didn’t want to be in a support group. A few years later, she changed her mind. I told her I would look for one. I found that there are many groups for caregivers but not for people with dementia/Alzheimer’s. I even contacted the national office of the Alzheimer’s Association. They told me they had experimented with them, but they had never had much success.

Thus, when Ken mentioned his support group, I was eager to learn more. Last week we had a conversation about it. I’d like to share it with you.

RICHARD: Ken, you have previously told me about your early memory loss support group. I’m preparing a new blog post and wanted to learn a little more about it. How did you find out about it? Did you inquire with your local Alzheimer’s Association or some other organization?

KEN: Well, it turned out to be pretty easy. We learned about it from my neurologist. He encouraged us to call them to gather information and to arrange a visit to their different programs.

RICHARD: Is this group part of a state-supported program. Do you know of similar groups in other places?

KEN: No, it is a local non-profit agency program that depends on both professionals and volunteers who are responsible for different parts of our regular agenda. I’m not aware of other groups here, but I have heard there are some in Austin as well as other major cities.

RICHARD: Tell me a little more about your group and how it works.

KEN: The program has two groups. One is for those who are in the early stages of the disease. That’s the one I’m in. The other is for those in the more advanced stages. We meet in a local church every Friday from 9:30 to 2:30. That may seem like a long time, but we have a regular agenda that we follow. Each part is designed to address the various needs of people with dementia.

RICHARD: Who leads the group?

KEN: We have several people who are responsible for different parts of our agenda. Some are volunteers from the community. There is a paid director who is in charge of the program and usually a social worker in charge of the individual group meetings.

RICHARD: I’m curious to learn more about what you do over five hours.

KEN: I’d be glad to fill you in on that. The first two hours we deal with current events. We have a couple of volunteers, one of whom is a radio talk show host, who come in with a collection of news articles they think would be of interest. They cover a variety of topics that have been in the news over the past couple of weeks. They are not intended to be a summary of the current news, but things of personal interest that are intended to generate discussion. They are distributed in print form to everyone in the group. We take turns reading to the rest of the group. We often have a lot of discussion as well. Of course, that varies with the topic. When we are finished with one article, we go to the next one.

I’ve especially enjoyed this part of the program. The topics are interesting and the people in the group have a variety of opinions they are glad to share.

Then we have thirty minutes of exercise. It consists of a series of chair exercises that all of us are able to do. It involves a lot of stretching and bending. It just keeps us limber.

At noon, we have a working lunch that lasts for two hours. This is more like what you might expect in a support group. The leader generally opens the meeting by asking if there is anything in particular that anyone would like to talk about. Sometimes there is. Sometimes there isn’t. In either case, the leader always has a topic for us. We talk about a lot of things that are of general interest to people with dementia.

The last hour of the day we focus on the arts, especially music and art, but we also include special topics of general interest. This portion of the program is led by someone who has skills and knowledge on a particular topic. For example, we had an interesting program by a woman who was knowledgeable about the history of butlers in England. That is something we knew little about and made for an interesting presentation.

RICHARD: I want to thank you for taking time to help me learn a little about your group. I can easily see why you have enjoyed it. I only wish there were more programs like it.

KEN: It’s been a pleasure, Richard. I’ll look forward to talking with you again.

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Last Night and This Morning

I was glad to see Kate get to bed a little earlier last night (9:00). That is something I am trying to encourage as a way of getting her to wake up earlier in the morning. I joined her about 45 minutes later. The other day, she told me the Russian choral music I like was beautiful. That and the fact that she was still awake led me to play that album as we went to sleep. It is very relaxing. I often play it while I meditate. I don’t know how long it was before we were asleep. I know that we only heard a portion of the album and that Kate mentioned several times how beautiful the music was.

This morning Kate gently opened my closet door where I was getting dressed. She was a bit groggy as she usually is when she gets up. She was looking for the bathroom. This is the first time I have been aware of her not remembering where the bathroom is. Of course, I am usually in the kitchen when she gets out of bed, so I wouldn’t know. Anyway, she was very confused. She was still dressed in her night gown but carrying the top she had worn yesterday. She said something about getting dressed. I told her it was still early (6:30) and that she might want to go back to bed after using the toilet.

I wondered how long she would sleep. It wasn’t long until I knew. She was up about 8:30. She had already taken her shower when I asked if I could help her. She told me I could get her something to wear. I put her clothes on the bed and showed her where they were and left her to get dressed. She was ready to go about 9:45 wearing exactly what I had picked out except for the shoes and socks. I considered that a small victory.

She has been in an unusually good humor this morning. As we drove away from the house, she said, “You’re a good guy. And you’re a good husband.” The she added, “What is your name?” When I told her, she said, “I knew that.” Then she asked my full name. I said, “Richard Lee Creighton.” She started to repeat it. Then she asked me to tell her again. When we arrived at Panera a few minutes later, she said, “Richard Lee Creighton.” She was beaming. We’re off to a good start.

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One of Those Sad Moments

At lunch today, I said something to Kate about her mother. Then she said something that suggested that her mother was still alive. I said, “Your mother passed away.” She looked shocked, and I said, “Yes, she died in 2005, and you can feel good about the way you took care of her the last years of her life.” Then I said, “You were a very faithful daughter.” She said, “I’m her daughter?” She looked very sad, and her eyes filled with tears. I gave her the whole story of how she had made arrangements for her mother to move to Knoxville to live with us. I talked about a conversation we had one night that led to her contacting a friend about an agency that had provided in-home care for her husband who had recently died. I also told her that the caregiver who was in the house to greet her when her mother arrived was holding one hand when her mother died and that Kate and I were holding her mother’s other hand. She seemed to be comforted by this.

This was the first time she has ever given any sign of not remembering her mother’s death, so it caught me off guard. It raises the question I have read others talking about. Should I have told her the truth? In this case, I didn’t have time to consider the best way to respond. I believe I did the right thing. I suspect that she will forget again sometime, but I expect that she will remember most of the time, at least for a while. If she were further along, I would probably let the subject slide by without saying anything at all.

Regardless of what was or wasn’t right about the way I handled the situation, it was sad to see the memory of her mother’s death slipping away as well as the sadness she experienced when I told her.

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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.