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Celebrating The Christmas Season

Last night, Kate and I attended a special Christmas dinner at Casa Bella. This is an annual event done in conjunction with Broadway Night. Christmas music makes up the entire musical program. That includes not only the musicians who entertain us, but also those who are in the audience. The formal program consisted of selected music from “The Winter Rose,” a cantata by Joseph Martin. Neither of us was familiar with the music, but we and the rest of the audience enjoyed it. Apart from the beautiful music, we sat once again with the same couple we usually sit with. They are both 93 and in great shape. We loved sharing another evening with them.

That was the second of a number of Christmas events we will be attending this week and next. I am happy that we are able to enjoy the season in this way. I only wish Kate were able to fully appreciate it. She does enjoy the specific events like last night, but her memory doesn’t permit her to retain any sense that it is the Christmas season and to reflect on how much we have enjoyed it in the past as well as the present. She doesn’t say anything about Christmas or anything about the outside decorations I have put up. Even when I showed her what I had done, she was only able to say, “That’s nice” without a lot of enthusiasm. This is another characteristic of her AD. She is simply much more even in her expression of emotions except for things that she especially likes or dislikes.

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It’s Beginning To Look A “Little” Like Christmas

Like everyone else Christmas is a special season of the year for Kate and me. We used to do all the things that usually accompany the season. Kate always loved these things, decorating the house, shopping for just the right gifts, and sending Christmas cards. Over the years, we have done less. Sending Christmas cards was the first thing to go. I don’t recall exactly when that happened. I am reasonably sure it preceded Kate’s diagnosis. Come to think of it, that might have been one of the earliest signs of her AD. I do know that it was things like that that caused me to recognize she was making changes that didn’t match her long-standing personality.

Since the diagnosis, decorating the house had become a priority only when we were entertaining during the Christmas season. We gave up hosting any Christmas events several years ago. For several Christmases, we have done next to no decorating. It was never something that I had been actively involved with. My responsibility was the tree and in the past four or five years an additional tree in the front yard. Our area garden club sponsors an annual Christmas tree sale and encourages everyone to put a Christmas tree in our front yards near the street. Apart from that and a wreath, I don’t think we put up any decorations last year. I know we haven’t had a real tree for a while.

This year, I felt like I should take the lead and do a little more. First, I tried to convince Kate to help by locating our decorations and going with me to buy a few things. She wasn’t interested; so I took care of this myself. I bought a new wreath and put it on the front door. I bought some red bows and ribbons and attached them to some greenery and put one in each of the windows on the front of the house. Yesterday afternoon, I also put up the outdoor tree and the lights. I located a small artificial tabletop tree for a table in the family room. I found several hangers for the mantel. Now if I can only find the stockings, we’ll be set. Years ago, Kate had bought a 3-foot Santa that she has always placed in the family room. I have done that. This is only a tenth of what Kate used to do, but it is something, and we plan to enjoy the Christmas season. We would have done that anyway, but I am thinking this may be the last Christmas that Kate will be able to appreciate. I’d like it to look a little like Christmas.

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A Nice Thanksgiving

We had a very pleasant Thanksgiving with Jesse and her family. Once again, we ate well. I suspect that is true for most of you reading this message. It was a relaxing day. The four adults were awake and downstairs before 8:30. The boys didn’t come down until a good bit later. Kate and I were mostly observers in the day’s activities. Jesse and Greg worked off and on the entire day. Jesse fixed everyone’s favorites. That meant mac ‘n cheese for Randy, bow tie pasta for Ron, and asparagus casserole for Kate and Jesse. The only sad part for me is that Kate no longer remembers that the casserole was a holiday dish that her mother made when she was growing up. She simply ate it without comment, and in the midst of all the activity, I forgot to tell her how much she had always enjoyed it. She loves reminiscing about her mother and would have liked thinking about other holiday favorites that she made for her family.

Like many families, we had the football games on all afternoon and into the evening. We didn’t sit down and watch any of them, but we kept up on the scores and periodically sat in front of the TV during critical portions of the games. After dinner last night, we watched Christmas with the Kranks. I hadn’t seen it before. It was one that Jesse’s family had seen before and loved. It was fun to watch as a family. Jesse and I were the primary viewers. Kate worked jigsaw puzzles on her iPad the entire time. She got in a lot of that yesterday. Greg had a football game on his the bedroom. Ron went back and forth from the movie to the game, and Randy was playing games on his phone. Despite the fact that we were not all watching the movie intensely, I felt it was a nice family time that allowed each person to pursue his personal interests while still being together.

As I have noted on other trips, large blocks of time can be a problem for Kate. She doesn’t like to stay in one place for an extended period of time. That is an issue whether at home or on the road; however, it is easier to change locations at home. For example, we can run to Panera or Barnes & Noble. She can work in the yard. We are always moving from one place to another. This desire to change locations is compounded when we travel because she is also confused about where we are and when we are going home. Early in the day yesterday, she asked me when we are going home. I told her we were going home “tomorrow.”

During the middle of the day we played Uno with Jesse and the boys. We had a good time and had a few laughs as well. I didn’t grow up playing lots of games at home, but I have come to recognize how good they are at facilitating group engagement. Everybody has fun most of the time except when someone loses too much. Playing with Kate adds a special dimension to games. She can’t remember the rules, and when I would try to help her, she would resent being helped. She had a real sense that we didn’t believe she could do anything right. At one point, we all knew that she had a “wild card” in her hand with a good opportunity to use it. We kept telling her what a wild card is and when to use it, but she never recognized that she had one in her hand. It was only one of three cards. She simply didn’t perceive it. Despite this issue, the game was a success.

Sometime during the night, Kate screamed, “Help!” I asked what was wrong. She said something about “her.” I asked, “Who is she?” She said, “My helper.” I had been thinking things were going so well with the sitter. Suddenly, I wondered if she had been afraid of the sitter. I asked if she had done something to make her afraid. She said, “No.” The she told me the sitter was with her. There was apparently something else that had scared both of them. I asked what had happened. She said, “I don’t know.” She mumbled a bit. Then for the next few minutes, she periodically said something about her (the sitter) as though she were concerned about her safety. I told her everything was all right, that it was just a dream. She said, “I hope so. I would feel better.”

Dreams like this are not typical for Kate, but she does occasionally have them. Fortunately, most of them involve her days in the classroom. She is always giving instructions to her students in a very kind way.

It is now 9:30 a.m. Kate has not yet come downstairs, and I want to leave in the next 30-45 minutes. I think I will go upstairs to check on her. Jesse has gone to work. The boys are still sleeping. It’s been another good holiday with family.

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Happy Thanksgiving

Kate and I are in Memphis where we are celebrating the holiday with Jesse and her family. It is a cold morning (26 degrees) but warming up to the mid-40s. The sun is shining brightly. I am in the kitchen where Jesse and Greg are making preparations for our Thanksgiving dinner around 3:00 this afternoon. They are cooking a turkey on the Big Green Egg. From past experience I know how good that is. Jesse is quite a cook. I probably haven’t mentioned that she is a vegetarian and has been for over 25 years. That makes it a little surprising that she cooks meat, but the rest of her family have never adopted her veggie habits.

Our friend Nancy Hardwick sent a text this week telling us that Charlie is now on hospice. He was diagnosed with dementia before Kate. When we visited them in Dallas last month, I never would have predicted this. He was very quiet at that time, but I observed no signs of his rapid decline. She said he started going down shortly after we left. He lost his mobility and has stopped eating.

Her message reminds me that there are many of you whose Thanksgiving will not be as joyful as our own. We are very grateful for all our own blessings and are mindful of those who are dealing with the more severe aspects of this disease. I also know that our time is still coming. I just don’t know when. I know it will be sooner than I want.

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Halloween in Our Neighborhood

I don’t think I have ever commented on Halloween in our neighborhood. It’s a very big deal. We moved into our house in July 1997. Not long after that, I met some of our neighbors during one of my morning walks. They asked if the previous owners of our house had told us about Halloween. They hadn’t, but they informed me of the large crowds of children that descend on our street. I appreciated the warning but still didn’t buy enough candy. I had to run out to buy more an hour into the evening. I didn’t count the trick-or-treaters, but based on the amount of candy I had bought, I guessed it to be nearly 300. It has dipped a little in years when we have had inclement weather, but it has grown tremendously since then. Last night was our biggest crowed. I estimate that we had over 800 before running out of candy at 8:15.

Prior to living in our current house, we had lived on a busy street and rarely had more than 5-10 trick-or-treaters. Knowing that Halloween would be a quite different in our new home, Kate suggested that we also offer water. I laughed and made fun of what I thought was a silly suggestion. After all, what child would want water on Halloween. Kate got the last laugh on this one. I discovered that plenty of children and their parents appreciated having water as well as candy. I estimate that about a third of the total number also have water.

The success of the water and the candy has required us (me) to focus on the logistics of serving such large numbers. First of all, we need to remain outside the entire time. There are simply too many people. There is an almost constant stream. Sometimes tey are in groups of 10, 15, or even 20. We also have to have plenty of cups, a 5-gallon water container, a table for the container and cups, and a method of dispensing as efficiently as possible, and a plan for refilling the water and supply of candy. Kate has been the dispenser of water while I take care of the candy.

That has gone rather well until the past few years when the number of trick-or-treaters reached 500 or more. This year it was clear that Kate will not be able to handle the water in the future. Indeed, I suspect that by next year, she may not even sit outside with me. If so, I will arrange for someone else to help with the water. Even before her diagnosis, she was having difficulty doing things that required a designated series of steps, like those required for fixing a meal. Thus, she had some difficulty getting water served without spilling it, pouring water in the unused cups as opposed to those that were used and then placed back on the table, locating the supply of cups even though it was in clear sight of her, etc.

The good thing is that she never displayed any sense of frustration. It took much longer to serve the water than it should have, but it didn’t bother her or the people who were waiting for water. The latter is another indicator of the importance of the water itself. They were willing to wait, often with as many as 8-10 people in line.

As we have every year in the past, Kate and I both had a good time. I am glad we had another successful Halloween although I am sad thinking that it won’t be the same next year.

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Travel Report Chautauqua 2017

Today was our last day at Chautauqua. It was probably our last time here together. That thought has saddened me deeply today. At various times during the day (sitting on the porch for breakfast and checking email, walking the brick walk to and from the Hall of Philosophy, having lunch at La Familia and dinner at the Afterwards Cafe) I have thought, “This is the last time we will experience this together.”

Even with the sadness, I believe that I made the right decision to come this year and to leave after only one week. Today was another good day for us, but Kate was worn out last night. She was in bed at or before 9:00 last night and didn’t get up until about 11:00 this morning. Not only that but between lunch and the 2:00 lecture, she went back to bed. I had to get her up to attend the lecture. She would have preferred staying in bed but got up anyway, something that she has been doing for the past 6-12 months. Prior to that, it was very difficult to get her up. She gets up much more quickly now.

Returning from the 2:00 lecture at the Hall of Philosophy, she walked even more slowly than usual. We stopped by the apartment for a short time and then went to see the play “Noises Off.” Again, she walked very slowly to and from the play. She seemed to enjoy the play despite the fact that it is a farce. She generally doesn’t like that type of humor. This is something we have seen three other times. She enjoyed it each of those times.

It is almost impossible for me to imagine coming back with her if she declines as much in the upcoming year as this past year. There would be problems on multiple fronts. Just the travel itself would be trying. I know that it would be difficult for her to enjoy herself once we are on the grounds. That would affect my enjoyment as well. I would need to have help to take care of her. That can be arranged here. My contact at the Chautauqua Foundation has indicated that she could help in that regard. At the moment, I feel that it would be best not to come at all. It may be that it would work out for me during the following year although everything depends on Kate. It is simply too early to be planning anything too specific.

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In Asheville

This year I have planned an unusually leisurely few days while in Asheville. A year ago, I had done somewhat the same. At that time I was not expecting to be here this year. We are fortunate this has worked out. I have great difficulty imagining, however, that we will return next year. As I have noted in other posts, I believe she is feeling further detached from all that is going on around her. That makes the total experience for both of us less rewarding than it has been in the past. On the other hand, we are able to enjoy meals out and catch a few performances. I enjoyed Waiting for Godot yesterday. Although Kate did not feel the same way (She said, ”This was not my kind of play.”), she never seemed bored as she sometimes does; so I feel it worked out.

This morning I noticed that the door to our room was not fully closed. It appeared that she had tried to open the door and was stopped by the security latch that I had engaged last night. One of the things that scares me a bit is the possibility of her leaving the room at night without my hearing her. I don’t believe she can operate the security latch. At the same time, I never know; so traveling like this has a few extra stressful times.

We are both enjoying being back at the Haywood Park Hotel. As we walked up to the front desk, the woman on duty recognized us and greeted us by name.

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Last day at Chautauqua

This is Friday morning. Our last day at Chautauqua. Not the last day for this visit; the last time we will ever make this trip – at least together. If we had left last week, I believe I would have been sadder. The fact that I decided on a third week was a good decision, but it has also given me the feeling that it is time to get back home. I suspect the fact that Kate has been so tired the past few days (Is it almost a week?), has influenced me. She has only been to the evening entertainment once or twice in the three weeks we have been here. Yesterday she missed the morning lecture. I think it is time for her to be home even though she gets bored there. I believe this is simply a natural step in the evolution of her Alzheimer’s. I will always be glad that we had this much time here.

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At Home at Chautauqua

We arrived at Chautauqua yesterday afternoon around 3:00 p.m. We are staying in a new place this year, the Rose Cottage. It is a bit small but works well for us. The location couldn’t be better. We’re about 75 yards from the Amp (Amphitheater) and directly across the street from the Brick Walk Café where I get my coffee each morning along with muffins for both of us.

At dinner at the Brick Walk Café, Kate approached a couple at a table and asked if we could join them. Naturally, they accepted. It turned out to be a great Chautauqua experience. They are very interesting people from New Hampshire. This is their first time here. The husband has had a strong interest in Thomas Edison since he was six. They are here because Edison was married to one of the founders of Chautauqua. His wife is a musician. She taught music in the school system and also plays the piano, organ, and harp.

Our entertainment last night was The Temptations and The Four Tops, both Motown groups from the 50s and 60s. Kate really enjoyed herself despite being hot and the music loud. I believe she is so into performances that these things didn’t matter.

We’ve encountered no problems so far. I have told two of our neighbors and he owners of the Rose Cottage about Kate so that they will be attentive if they observe anything unusual.

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Kevin’s Visit

Last Friday night Kevin arrived for a long weekend visit with us. This is the third time he has come to visit us without his family. I hasten to add that nothing is wrong at his home, he has simply wanted to take advantage of the time he has with Kate. His plan is to visit twice a year. His first visit was last March. The second was in September. Assuming he sticks to this schedule we will see him here again this coming September.

The first thing to report is that it was another good visit. We went to one of our local theaters on Saturday to see Peter and the Starcatcher. We had dinner at Casa Bella beforehand. The dinner was good. The play so-so. Nonetheless, it was fun being together. Sunday we all went to Sunday school and church. In SS I showed 2 videos showing diverse ways of recognizing Holy Week. (We are in a series of lesson with the theme of diversity within Christianity.) The first video was the executive director of Jews for Jesus who was explaining the meaning and procedure for the Seder. The other talked about the Easter parade in Seville, Spain. We had a short, but good discussion. The class seemed to enjoy it.

After church, we went to lunch at Chalupes so that Kevin would be acquainted with our favorite Mexican restaurant. We were pleased that he liked the enchiladas even though they were not Tex-Mex. At 3:00 we went to the Bijou where we saw Steel Magnolias. We all enjoyed it.

There were two highlights of the weekend. The first was doing 4 video conversations with Kate. Kevin used his camera. The first two 25-minute conversations were with Kate and me. We talked a little about her family, our courtship, starting graduate school at TCU and our move to Madison. The next two were with Kevin and Kate. They talked a little more about her family but mostly focused on her work when he was a child, her retirement, and other things that included his own impression of things when he was a child. These conversations reminded me of those that are broadcast on NPR’s “Morning Edition” every Friday. They were quite natural. We were all at ease and simply talked about the subjects as we might have done if we had been sitting around in casual conversation. I am expecting these to be great oral history records and plan for us to do more in the future. I am going to investigate getting a video camera so that we can continue to do this on our own. It was also a very therapeutic thing for Kate. First of all, she got pleasure out of talking about the various aspects of her life. Second, I believe the act of talking itself was a good way of exercising her brain. She did very well. No one would have suspected she has Alzheimer’s.

The second highlight was our visit with Kevin’s piano teacher from the time he started playing (around 7 or 8) and his senior year in high school when she suggested he take from a professor of music at the UT. She has recently moved to a local retirement community with continuing care from cottages, apartments, to assisted living, skilled nursing, and dementia units. She wanted to hear Kevin play. She played some herself and got him to the piano. He has not played in a while, but we enjoyed hearing him as well.

It was a leisurely visit, but we did stay up a little later and didn’t make up for it by sleeping later than usual. Neither did Kate rest as much during the day. That changed today. She got up at 5:25 this morning to say goodbye to him. We left at 5:35. She went back to bed and didn’t get up until I got her up for lunch at 11:35. It is 3:01 pm right now. She went back to bed at 2:08.

She got along so well while Kevin was here that he didn’t notice much difference from when he last saw her in December. He had been a little concerned before getting here. He had spoken with Virginia Franklin and my brother. Both of them had told him how much she had declined since they had seen her last.

I told Kevin that Kate had had a good week before he arrived. His visit helped her sustain this pattern. Now that he is gone, I can see her taking a step back. It is as though she were on stage while Kevin was here. Now she doesn’t’ have to keep up pretenses. It’s really more than that though. We were busy while he was here. She didn’t have to rely on her iPad for entertainment. She didn’t get bored. That is different today. If only I could keep her entertained more steadily, she would be better. This is difficult with my other responsibilities. I hope I can get her to have some more video conversations. That might help.