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Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

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Our 59th Anniversary

Kate and I celebrated our 59th wedding anniversary on May 31 last week. We gave up giving presents to each other many years ago. We concentrate on sharing special experiences together. That has often involved travel. Alzheimer’s ended that, but we always seem to find other ways to celebrate by being together. This anniversary week brought us an abundance of joyful moments.

It was highlighted by several particular events. One of those happened a week ago Saturday afternoon. I had just returned from lunch. Kate was resting in her recliner. I pulled up a chair beside her and started playing some of our favorite songs. For almost an hour, we held hands as we listened to the music. She closed her eyes, smiled, and ran her fingers over my hand. We forgot all that is going on in the world around us and enjoyed the music and being together.

Another happened on the following Tuesday, the day of our anniversary. I’ve looked forward to this for some time and have reminded Kate frequently over the past few weeks. She couldn’t remember, of course, but I hoped that my reminders might ring a bell when I wished her a Happy Anniversary. It was National Smile Day, and she smiled all day long. She was awake early, more alert, and more talkative. The following day was similar, so the day after she needed to rest and did so pretty much all day. She bounced back the next day.

Another thing made the week an especially good one. We had a new caregiver (Regina) Monday through Thursday. She had been with us one other time for just a couple of hours, and I had been impressed with the way she related to Kate. She sang and talked with her. That was most unusual. We’ve had only two or three others that I know have taken the time to connect with her.

Last week, she was here for four 8-hour days. At first, it looked like Kate was a little unsure of her, but on the third day, I got a surprise. I had been working on my computer in another room when I took a break to check on her. Regina had pulled up a chair beside Kate’s recliner, and they were holding hands. She told me that Kate had initiated the contact. It was a beautiful thing to see. Kate seemed perfectly comfortable with her. It reminded me of the way she relates to me.

There were more good times throughout the weekend. Kate had an especially joyful experience with music on Saturday. We had just returned to the apartment after an early dinner. I turned on one of her favorite albums by the Susquehanna Chorale. It includes songs like ”Loch Lomond,” “Danny Boy,” “Shenandoah,” ”Swing Low, Sweet Chariot,” and “Deep River.” She attempted to mouth the words of the songs and moved her head with the rhythm of the music. She was deeply moved by the music. I took pictures of her response along with several videos that I passed along to our family. It’s hard for me to express how wonderful it is for me to see her so happy. Music continues to be a powerful source of pleasure and therapy for both of us.

My expectations for our anniversary celebration were not high, but it was a week punctuated with joyful moments. “Living with Alzheimer’s” is not easy, but moments like those we experienced last week lift our spirits and sustain us during more challenging times. I am very grateful.

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Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

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The Value of Social Connections

Maintaining social connections has been a major part of our therapy since Kate’s diagnosis. I have found it especially important in recent months as Kate has declined more significantly. Although she enjoys being with others as much I do, her pleasure is strictly in the moment. On the other hand, I enjoy the anticipation, the moment, and the memories. As a caregiver, being with other people lifts my spirits. I never heard my dad express it, but I know he must have felt the same way as he cared for my mother who had dementia.

Yesterday we drove to Asheville for what turned out to be a better than expected variety of social experiences. As I mentioned in my previous post, I thought it could be our last one and wanted to see a couple of people who had meant a lot to us on our previous visits. A few days before leaving, I learned that one of my Twitter friends and her husband were in Asheville and would be driving back home Sunday afternoon. I asked if we might meet before they left. We decided to get together at our hotel as soon as we arrived.

Our meeting went off without a hitch. I was eager to meet my friend and was eager to introduce her to Kate. This could have easily been a conversation between my friend and me, but she immediately looked straight at Kate and engaged in conversation with her. I was pleased to see that. It illustrated her sensitivity and comfort level with people with dementia. More importantly, she quickly established rapport with Kate. That set the stage for an hour-long conversation before they had to leave. As we were saying our goodbyes, my friend said something nice to Kate who was unable to respond verbally. The tears in her eyes said it all. She was touched by someone who entered her life as a stranger but left her feeling as though she were a longtime friend.

Our experience at dinner turned out to be another touching experience. We had another anniversary celebration. This time at a new restaurant but with a server who has taken care of us at three different places over the past few years. It was good to see her again. Just as I am telling you about her, she had told her associates, including the manager, about us. We met several of them and were very well-cared for. The meal itself was outstanding. At the end of the meal, we had quite a surprise. Our server said the evening was “on her.” She didn’t even accept a tip.

Experiences like these are bright spots in our lives. They sustain us through difficult times, and we have enough of them to keep us going. I feel grateful.

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Our Fifty-Sixth Anniversary

We had a nice day yesterday. It was our 56th anniversary. Quite a few times, we have been out of town celebrating the occasion. Tomorrow we are making an overnight trip to Asheville, but we’ll be back the following day. The trip is really more for me than for Kate. She can’t remember that it was our anniversary or that we have often celebrated there, but I remember. This is likely our last trip. I would like to see a couple of people who have been especially kind to us on past visits. One is a woman who works behind the desk at the hotel. The other is a server who has taken care of us at three different restaurants and is now working at a fourth. They are like so many others we see on our daily visits to restaurants around here in Knoxville. I want them to know how important they are to people like Kate and me. They all play a vital role in our own “unrecognized” support system.

I did something different with our sitter yesterday. I asked her to meet us for lunch, and she could take Kate back home. After we sat down, Kate played the role of a hostess and said to her, “Tell me your name.” She said, “Mary.” Kate said, “That’s a nice name.” I should mention that Mary is the only sitter who has been with us since I engaged sitters a year and eight months ago. Then Kate proceeded to point to me and said, “I’m his daughter.” Neither of us corrected her.

When I returned home, I found the two of them in the family room where Kate was looking through her “Big Sister” album. I sat down with her, and we went through the rest of the book together. She continues to enjoy this album, but she never shows any improvement in her ability to recognize the people in every photo. She does generally recognize the photo of herself on the cover and often recognizes her brother who is seated beside her.

I had bought an anniversary card for her and written a short note printed with a 32-point font so that she might be able to read it. I read it for her but plan to put it in her memory book. We shared a tender moment as we reflected on our marriage and how fortunate we have been. Then we went to dinner and relaxed with music until bedtime.

She was in bed about thirty minutes before me. When I got in bed, I moved close to her and put my arm around her. I said, “We had another good day, didn’t we?” She agreed. I said, “We had a nice anniversary.” She said, “Anniversary for what?” I said, “It’s our wedding anniversary.” She laughed, something she has done quite a few times when she doesn’t remember that we are married. I said, “Don’t you believe we’re married?” She said she didn’t. I said, “Then how do you explain that we’re snuggled up in bed like this ?” She said, “Well, you’re very nice to talk with.” I said, “I love you.” She said, ‘I love you too.”

Life is different these days, but I hope you can tell that we still enjoy life and each other.

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A Slow Start, But a Good Finish

Yesterday Kevin and Rachel celebrated their 25th anniversary. It was a special opportunity to be with them and the grandchildren. I only wish Kate could have understood and been able to enjoy it. She got off to a rocky start. It was one of those few days that she didn’t know who I was when went in to wake her. I told her we were going to have lunch with Kevin. Knowing she can’t remember who he is, I was careful to tell her that he is our son. I don’t believe that fully registered with her. As she sat on the side of the bed before standing up, she gave me a puzzled look and said, “Who are you?” I told her, but she still looked confused.

She asked me what she was supposed to “do now.” I told her it was time for a shower and walked her into bathroom. She showered and dressed more quickly than usual. I sent a text to Kevin letting him know she was up. His family was as well, and they came over for a short visit at the house before we all went to lunch.

Kate was not in a good mood when she woke up and wasn’t interested in being with company. That and the fact that she had had trouble the day before led me to take the lead in our conversation. TCU is very important to her. I drew attention to the number of us who had graduated from TCU or were current students. Of the remaining two grandchildren, our granddaughter will be a freshman in the fall. I also mentioned that it was a special day, Kevin and Rachel’s 25th anniversary. My efforts fell flat. Kate was not ready to engage in conversation. I believe it was a combination of her mood as well as some insecurity. We had lunch together at a nearby deli. Kate was mostly quiet. I felt she was uncomfortable. After lunch, Kate and I came back to the house while Kevin’s family did some sightseeing.

We were home about forty minutes before we left for Kate’s dental appointment. She frowned when I told her where we were going. I was surprised. She has always liked her dentist. She was quiet all the way. We waited a few minutes in the lobby before the hygienist came to take her to the back for her cleaning. Even though Kate has known her for years, she didn’t display any emotion of recognition or pleasure at seeing her.

In a little while, the hygienist returned to speak to me. She said Kate resisted the X-Ray procedure. When she got to the polishing part, Kate seemed frightened. The hygienist didn’t go any further. I explained that she had not been in a good mood since getting up. Ironically, I had been considering taking her back for a cleaning every month or two. That doesn’t seem like a good thing. Besides that, she said Kate seemed to be doing a good job brushing. I told her I was a little surprised but that she brushes her teeth a lot during the day as well as when she gets up at night. She left and brought Kate back to the reception area where I took care of the bill.

As we drove away from the dentist’s office, she said, “Are you hungry?” By this time it was less than three hours since we had eaten lunch, but it is not uncommon for her to think she is hungry even sooner than that after a meal. I understand from what I have learned from others that this is quite common for people with dementia (PWD). I told her I wasn’t hungry, but I thought it was a good time for a treat and mentioned going to Marble Slab. She liked the idea.

After tasting the first bite, she raved about how good it was. I agreed. She continued to express her pleasure until she had finished. She was a changed person. All signs of moodiness had vanished in an instant. She talked about having another serving, and I felt the same way but didn’t give in. I knew that we would soon be having a big dinner.

Coincidentally, I had read a relevant section of Dementia With Dignity by Judy Cornish earlier that morning. It is a companion piece to her Dementia Handbook in which she outlines the importance of focusing on the intuitive abilities of people with dementia (PWD). Her latest book gives more details on how to apply her theoretical framework presented in her earlier work.

The part I read emphasizes the importance of managing the moods of those with dementia. She notes that PWD regularly fail at tasks and conversation and are unable to “understand where they are, why they are there, and who they are with.”  She goes on to say that these experiences often lead to negative feelings. Her point is that caregivers can play a major role in redirecting their moods. I hadn’t been successful with that when we were with Kevin’s family earlier in the day, but taking her out for ice cream did the trick.

That was good preparation for dinner. We came back to the house where she wanted to rest. Not long after that, Kevin sent a text asking if we were home. He and the children came over for an hour or so. We played Mille Bornes while Kate continued to rest. They left around 5:00 to get ready for our 6:00 dinner.

The dinner went very well even though it was a challenge for Kate to keep up with the conversation. She had to ask us to repeat ourselves a number of times. After I offered a toast to Kevin and Rachel, she leaned over to me and whispered, “Whose anniversary is it?” Despite these things, I was encouraged she was trying to understand and didn’t appear to be withdrawn.

So the day ended on a high note. I am glad about that but also disappointed that Kate was unable to fully enjoy what was a very special visit with Kevin’s family.

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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.

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Signs of Christmas

It’s beginning to look and feel a lot like Christmas. Our neighbors across the street started their decorating the week after Thanksgiving. When we returned from Texas, we noticed that the neighbors next door and one other put theirs up while we were gone. The past couple of years I haven’t done anything except to join all the neighbors in putting up a tree near the street in the front yard. All of us do that every year.

This could very well be the last Christmas that Kate and I will celebrate in a typical way. I felt like we should do more than in the past few years. I discovered that the wife of the man who has been helping to clean up the dead shrubs around the house is a former florist and decorator. I engaged her to put up greenery with red bows outside in each of the front windows. She also put garlands with white lights down the railings on either side of the front porch. I showed her some of the other decorations that Kate has used in the past. She use those along with a few new things and decorated our family room and the bay window in the kitchen. It is not elaborate but attractive. Kate was happy with what she had done. So was I.

Our church sponsored a Christmas luncheon for seniors that we attended yesterday. We were supposed to be at church at 11:15 to catch a bus to the restaurant where it was held. That made me a little nervous since it can easily be 11:30 or noon before Kate can get ready. Fortunately, that was not a problem. I woke her around 9:30. She got up easily, and we were there in plenty of time. I was happy about that because we have been very irregular in our church attendance for at least a year. I believe it is good for both of us to maintain our ties. This luncheon was a good opportunity with a group of people we have known for a long time.

Kate handled herself well as usual. After we arrived, I left Kate with a couple of friends while I went to a table to make name tags for us. I was gone only a short time when I noticed that she was looking around the room. I knew she was looking for me. I walked over to her. She said, “I didn’t know where you were.” The only thing I know that she couldn’t handle was how to answer a woman’s question as to where she lives. She turned to me and asked me to tell her. This was a woman we don’t know well and probably doesn’t know about Kate’s Alzheimer’s. She must have thought it strange. We had a brief conversation with another woman Kate didn’t remember. The woman said she had trouble with names herself. Then Kate proceeded to tell her she has the same problem. She went on to describe how she turns to me, points to someone she should remember, and asks me the person’s name.

We came back home after lunch. Kate rested for about almost an hour before we left to get our hair cut. They cut Kate’s hair first and then mine. Kate worked on her iPad while I was getting my hair cut. When I was through and ready to leave, she was in the middle of a puzzle and wanted to finish. I sat down with my iPad and did a little reading. The next thing I knew thirty minutes had passed. I asked if she were ready to leave. She said she wasn’t. She had gotten comfortable and was enjoying herself in much the same way she does at Panera or Barnes & Noble. I waited a few more minutes and then told her I thought it was time to go.

From there, we went to Target where I was looking for a hanger for the wreath for our front door. They didn’t have what I needed, but Kate walked very patiently through the store with me and back to the car.

It was getting close to dinner time, so we went to eat before going back home. We had a nice dinner. Then we returned home and relaxed until 9:00 when we started getting ready for bed.

Kate’s brother and his wife arrive from Texas this afternoon. As we left the restaurant last night, I reminded her of that. As I expected, she hadn’t remembered and asked their names. We went through them a couple of times. Then she asked when they were coming. When I told her this afternoon, she asked, “Where are they staying?” I told her they were staying in a hotel near us. She had a look of relief as she realized she didn’t have to do anything to get the house ready. I was pleased to see that. It is one of the few signs I have seen suggesting that she might feel some responsibility for taking care of things like that. Something similar happened yesterday afternoon. We drove up to our house, and I said, “Look at all the leaves, and (the person who cuts the grass) was just here last week.” Kate said, “I guess I’ll have to get out and rake them.” She has done a little raking in the past but never often. I was surprised that she assumed it would be her responsibility.

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Halloween on Our Street

Kate and I moved into our present house 21 years ago this past July. Not long after that, I chatted with some neighbors while I was out walking. They asked if anyone had told me about Halloween. I told them I hadn’t, so they proceeded to inform me. I don’t recall any specific numbers, but I was surprised to learn that we get a lot of trick-or-treaters. We got very few at our previous houses, and the last one was only a quarter of a mile from the new house.

Since that time, we have discovered just how big a deal Halloween can be. During our first year or two we had around 200, but each year it has grown. Last night, we set a new record with almost 850 children who stopped by the house before we ran out of candy at 8:15. You might think that’s a lot, but it’s far from a record on our street. Our neighbor across from us said they had around 1200. They had more candy and continued until after 9:00.

We may not have the highest total number of trick-or-treaters, but we’re the only ones serving water. Yes, that’s right. I said “water.” This is something about which Kate has taken great satisfaction over the years. As we were making plans the first year, she said, “I’ll make sure to have plenty of water.” I said, “Water? I can’t believe kids would like that. They’re after anything with sugar in it.” She insisted. We had water, and to my surprise, it was well-received. As the number of visitors increased, I decided to buy a 5-gallon cooler for the water. Even with that, we have to refill it once or twice. After running out of candy last year, we had up to 20 people at a time waiting in line for water. That would have happened last night if we hadn’t run out of cups, 350 of them. We refilled the cooler twice. We dispensed about 11-12 gallons of water, so I am acknowledging to all that Kate was right. There really is a market for water – even on Halloween night. You don’t suppose that it was Kate who provided that knowledge to all those companies that bottle and sell it everywhere we go?

As you might expect, all this requires a little planning and coordination. Our first year in the house, I realized we were going to run out of candy very early and quickly went back to Target for more. We still didn’t have enough. We also learned that it made no sense to stay in the house and wait for the doorbell to ring. We found it much easier and efficient to sit outside. Kate tends to the water and I give out the candy. Of course, there are times when I have to go back inside to replenish our supply. Sometimes Kate would be alone for a few minutes when a large number would arrive at the same time.

Although it’s been almost eight years since Kate’s diagnosis, last year was the first time I felt that she had any trouble with her role as the “Water Lady.” I suspected then that this year would be different, and it was. For several months, I had planned to get someone to help me and just let Kate enjoy the children. About six weeks ago, I discovered that a couple that has been helping us with some landscaping goes all out for Halloween. The husband told me he and his wife had heard about the large turnout we have on our street and wondered if his wife and daughter could come to the house to see first hand what it is like. I told him that would be great and that I could put them to work. That worked perfectly. The daughter took charge of giving out the candy, and  her mother assisted with the water. Kate started out the evening by filling the cups with water. She was very slow. Ultimately, I started filling the cups. I was also in charge of replenishing both water and candy as needed.

Kate got cold and wanted to go inside. That left my two helpers and me to take care of things which wasn’t a problem. It’s just that I was hoping Kate would derive more pleasure from being with us. I felt this was her last time to be a part of things. I doubt seriously that she is likely to participate at all next year. Perhaps, the saddest part for me is that she never seemed to recognize that she was behind our having water in the first place. She used to have fun reminding me that it was her idea, and that I was wrong about its popularity. Last night she expressed very little enthusiasm for the entire affair. She did enjoy seeing the children for a while but tired of that much earlier than I would have expected.

So it was a successful night for trick-or-treating but also sad to think that this long-standing tradition will not be the same again.

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Music Speaks Again

As expected, opera night at Casa Bella was outstanding. The two singers were unusually good. I don’t mean to take away from the singers we normally have. They are graduate students from the music school at UT. Last night, the soprano and the baritone have sung with opera companies in Europe. As you might expect, they were truly outstanding. The crowd, including Kate and me, loved them.

It had been three weeks since we had been together with the couple we sit with regularly. It was good to see them. Two other people sat with us. We had known each of them from other places around town, so it was also a nice social occasion as well. We also saw several other people we know from other musical circles.

Once again, the power of music spoke loudly. With all the changes that Kate is experiencing lately, music still has great impact. I am optimistic that it will be with us for a good while to come.