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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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A Sound of Music Evening

Although we have had a lot of things to take care of before our trip to Memphis today, we both enjoyed seeing the Sound of Music last night. I suspect the audience knew more of the music from this musical than any other musical. I know that is the case for us. It made for a good holiday treat. It was also a good night socially. As usual in Knoxville, we saw a number of people we know. One of those was Kate’s physician, Dr. Reynold’s.

We also had  a good experience at dinner. Kate had the chicken parmigiana. I had a spinach salad with grilled chicken a poached pears. We also spoke to a couple of people we know. I believe this aspect of small-city life has been good for us because of all the social connections.

The only noteworthy thing that happened last night was a new sign of Kate’s insecurity. When we arrived at the Bijou Theater, we both decided to make stop by the restroom before the performance. I walked her to the ladies room. I told her I was going to the men’s room and to wait for me right where I was leaving her if I wasn’t back when she was through. She quickly and sternly said, “Wait right here until I come out.” I did. To me, this is not only an indication of insecurity but recognition (at least partial) of her condition.

 Kate was enthusiastic about the musical. I was especially glad to see her continued interest in live performances since she doesn’t enjoy movies as much anymore.

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Going to Memphis for Thanksgiving

This morning we left for Memphis where we are spending Thanksgiving with our daughter, Jesse, and her family. We usually break up the trip by stopping for lunch in Nashville to visit one of several friends who live there. This time we had a short visit with  Angie and Tom Robinson, a couple we have known since our undergraduate days at TCU. She is a retired English teacher with the public school system. He is a retired philosophy prof from Vanderbilt. Tom and I are two of three TCU grads who have kept up and for a number of years have kept up an active daily email correspondence.

We  met them at a local Tex-Mex restaurant where we spent about an hour and a half catching up on our lives. They are both very much aware of Kate’s AD. Of course, Kate is not aware that they know. That has not been a problem since they never say anything that would even hint of any awareness. Of course, this is almost always the case with everyone. It would be a rare person who would say anything to a person who has AD.

Although were not together long, we had a pleasant visit. When we left, Kate specifically mentioned how well it had gone. She even noted that everyone got to talk, something she is sensitive to, at least with respect to her getting left out.

The rest of the trip wasn’t as pleasant. Not too far out of Nashville, we ran into heavy traffic on I-40. One lane going West was blocked for construction. That exacerbated the problem created by the holiday traffic. It took us almost an hour longer than normal to get to Memphis.

We all went to dinner at a pizza place Jesse and Greg thought we would like. It is one of those down home places with a lot of character in one of the older sections of Memphis. Jesse knows we like places like this and has taken us to quite a few on our previous visits. When we returned to the house, we didn’t waste any time in calling it a night. Although the drive from Nashville to Memphis wasn’t so pleasant, the visits with the Robinsons and our evening with Jesse’s family more than made up for it. It was another nice day.

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Odds and Ends

This is the Tuesday before Thanksgiving. We leave tomorrow for Memphis where we will spend the holiday with Jesse and her family. I am less prepared for the trip than I would like. I haven’t packed anything. Neither have I spoken with Jesse for a few weeks, so we haven’t coordinated on anything. I suspect neither of us is too worried there. We both know that she will be bearing the lion’s share of the load. The past few years she has been the one to cook the turkey in the Big Green Egg that she gave to Greg a couple of years ago. Since he travels a lot, she has been the one to use it.

This morning I took care of things like paying some bills and communicating with someone at United Way regarding a committee project on which I am working. We made our usual trip to Panera. Kate was up early again. We were there before 8:30 and back home by 9:30. We had haircuts at 11:00. We went to lunch from there. We had a 1:30 appointment to sign some papers at the bank and got back home about 2:15. Kate worked outside while I went to the grocery to get a few things to take to Jesse. Shortly after getting back, Kate came in from outside and wanted to go to Panera again. We will leave here in a few minutes to get ready for the evening. We are going to see a production of Sound of Music at 7:30 and will have dinner prior to that.

The day has gone well thus far. Kate’s good mood continues. Tomorrow we will stop in Nashville for lunch with the Robinsons, old friends from TCU. He is a retired philosophy professor at Vanderbilt. We won’t have time for a long visit, but it will be nice to see them. I sent a text to Jesse telling her to expect us between 5:00 and 6:00 tomorrow afternoon.

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Little Things That Add Up

During the past few weeks, I have looked back at the entries I made during the first year after Kate’s diagnosis. I have been struck by the similarity of symptoms then and now. If you are someone who has read the early posts as well as recent ones, you may be thinking Kate hasn’t changed very much. That is definitely not the case. She is unquestionably worse now than almost seven years ago. The difference now is the number and type of symptoms that occur. The progression of her illness has been very gradual. Were that not the case, she would be in a very different place today.

Last night and this afternoon, I observed two instances of behavior patterns that are very similar to what she has been doing but with subtle differences. They may be subtle, but they keep accumulating and make a difference for the long run.

About 8:15 last night, I told Kate that I was going to take a shower. She wanted to know what she should do, and I told her it would be a good time for her to put on her night gown and prepare for bed. She got up from her chair and went to her room to get her gown. When she returned, she was wearing a robe and was carrying a pair of slacks. Coming back to our bedroom in a robe rather than a night gown has become a rather frequent occurrence. I asked if she felt better in a robe than a gown. She looked puzzled. Then I clarified why I was asking. I told her that I had noticed that she frequently came back in a robe than a gown. Again, she looked puzzled. I asked if she would like me to get her a gown. She said she would appreciate that. I gave her a hug and told her I would be glad to do that. She thanked me. Like many things, I will never know why she doesn’t get a gown. She has any number that are hanging in her closet. I suspect that she may forget why she has gone into the closet, her eyes catch a robe, and she pulls it off the rack. She almost always wants a gown when I ask.

As we drove up to the house following lunch, Kate asked, “What can I do now?” I told her she could work outside or she could stay inside and work on her iPad. She indicated that she wanted to work outside, but first, she wanted to brush her teeth. I told her that would be fine. It is really a great day for outside. It is a bright sunny day and in the low-60s.

I came inside and hung my jacket in the closet. I was walking toward the kitchen when she came out. She asked, “What do I do now?” I reminded her that she had said she wanted to work outside. She said, “I was just making sure.” This may not be the first time this has happened, but it is at least the first time it has struck me that she must have forgotten what she had said she was going to do and wanted me to tell her. In the past, she would have forgotten and just done whatever she wanted at that moment.

Something else happened this morning that sensitizes me to Kate’s prospects for more serious declines. I got a text from a college friend, Nancy Hardwick, who lives in Denton, Texas. Kate and I had dinner with her and her husband, Charlie, in October when we went to our 65th class reunion at TCU. She indicated that Charlie, who also has dementia, had declined rapidly in the past few weeks, had not eaten in two weeks, and might go on hospice as early as tomorrow. I had known from Nancy and could tell by observation that Charlie was ahead of Kate in the progression of his dementia, but I never imagined that a few weeks later, he would be going into hospice care.

This news reminded me of a similar situation with a friend in Nashville. A year ago in August, I saw her at a luncheon here in Knoxville. I was aware of her Alzheimer’s and that she might be a little ahead of Kate. A month or two later, I learned that she had made a sudden decline and was on hospice. She died in February.

As I noted above, Kate has not experienced a rapid change of this nature. Knowing about these two friends, however, makes me more aware of that possibility.

In addition to these things, I have wondered about Kate’s behavior patterns over the past six weeks. She has been in an unusually good mood. She has been very compliant. I am wondering about two different things. First, could it be that she is moving deeper into the “fog” that accompanies this illness and is not experiencing the frustrations that have nagged her in the past. The second is something of a statistical nature. I have often observed certain kinds of events occurring with greater frequency are often followed by a corresponding lessening. The most vivid illustration comes from my business experience. If we have a month in which business increases dramatically, that is often followed by a slower month.

I don’t spend much time worrying about these things, but I do wonder. Among all the possibilities that I have considered, a sudden decline anytime soon is not among them.

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Nearing the End of Movies

For some reason I had not made plans for anything special today. While we were having our Saturday lunch at Bluefish Grill, I thought about the fact that we would have a full afternoon without anything specific. I decided to see what movies were playing and noticed that a new movie that supposed to be a good family movie, Wonder, was playing across from the restaurant. They had a showing at 1:10 which fit our schedule beautifully.

For months, I have been attempting with minimal success to find movies that Kate can enjoy. It is only in the past year or so that has become a challenge. We had had great success with Jane last week. I thought surely this would be one she would enjoy. It is a very touching movie with a number of emotional moments. It focuses on a young boy who was born with a condition that has caused serious problems. After numerous surgeries, his face was scarred which makes it hard for him as he enters school after several years in which his mother had home-schooled him. The overriding premise to the movie is the value of kindness.

As always, I periodically looked over to see how she was reacting but couldn’t be sure until we left after the movie how she felt about it. I quickly found out that she was not enthusiastic. She indicated that she had been very sleepy, or she might have enjoyed it. I was very disappointed because I didn’t feel that she needed to be able to follow the plot that the children, especially the stars, would capture her attention. I have often heard that people with dementia can sense emotions longer than they are able to understand what is literally happening around them. I have had the impression that has been true for Kate because up until the past year, she was enjoying most of the movies we have seen. That didn’t work today. This was a movie filled with emotion, just the kind that should have touched and would have in the past.

Although I am disappointed and saddened by the phasing out of our movie-going, I don’t intend to stop trying. On the other hand, I must admit to more than a bit of pessimism that I will have much luck. When movies go, the next thing could be live theater and opera. Life is closing in around us.

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It’s Getting Hard to Remember Names of Family Members

Yesterday while we were having lunch at Applebee’s, I had mentioned that one week from now we would be returning from Memphis. She looked surprised and asked, “What’s in Memphis?” I told her we were spending Thanksgiving with our daughter, Jesse, and Greg and the twins. She then asked me the boys’ names. She said, “You’re going to have to help me tell which one is which.” At first, I said that Ron is the one who is usually playing a video game on the TV in the family room and that Randy is frequently working on his Rubik’s Cube. I knew before it came out of my mouth that this was not going to work. Then she asked me to describe them. I told her a better way would be to show her pictures. I got out my phone and found several pictures I had taken on last February. I said Ron is the one on your left and Randy is the one on your right. Then she pointed to Ron and asked his name again. I told her. Then she point to Randy and asked the same thing. I told her. Then she went back to Ron. I didn’t really expect that this would help her remember them when we are there next week or even after lunch. I wasn’t even very surprised when she couldn’t remember them immediately after my telling her. We went over the names several times, and she never got them right.

Then I showed her pictures of our Texas grandchildren with a similar outcome. At one point, I asked her their parents’ names. She couldn’t tell me. I told her as I did before our trip to Texas in October. She really does know all of them. She just can’t attach names to them. I haven’t tested her, but I suspect she would have trouble just naming our son and daughter and their spouses. It would really be difficult to get the grandchildren’s names.

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Looking For My Guidance

Kate’s asking what to do or when to do is not a new thing, but it almost always catches me by surprise. In this respect, I am almost like someone who is unfamiliar with her habits. This afternoon before I left her with Mary, the sitter, she presented me with one of those times. As usual, I had not mentioned that the sitter would be coming and I would be going to the Y. I’m not quite sure why I don’t. It may involve several factors. One is that I know she won’t remember even if I tell her. Another is a slight fear that she might not react in the positive way she has done thus far. The latter is not a serious concern since she has reacted so well on every previous occurrence. Maybe I will get over this soon.

When Mary arrived, Kate was in our bedroom working on her iPad. Mary went back to say hello and to let her know that she was here. Then she came back into the family room and took a seat. I went back to say goodbye to Kate. When I approached her, she motioned me to come over to her. When I did, she started to whisper something. I thought she might be about to ask her name. She surprised me when she asked what I wanted her to do. I told her she could continue working on her iPad or she could work outside or they could go to Panera. She acted surprised that she was free to do these things. I have had this impression a few times before. It is as if having a sitter restricts what she can do. I have tried to be very clear that I want her to do the things she wants to do while I am gone. The thought also strikes me that it may not be the sitter that is the cause of this sense of a restriction on her activities. I have mentioned that when we return from home during the day, whether it is from Panera in the morning or from lunch in the afternoon, she frequently asks if she can work outside, where she can work outside (the front, the back, or all around), and if she can use her clippers. I have never restricted her with respect to any of these things, but she always reacts with surprise when I say “yes” to each of her questions. Thus, it may be that she still sees me as setting boundaries for her even when the sitter is here. While I hate for her to feel that I control her in this way, I must admit that also makes compliance work well, something that is increasingly evident when I do want or need her to do something like coming inside to get ready, to wear clothes that are most appropriate for the occasion, etc.

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Acknowledging the Impact of Dependence

I envy those who seem to be able to recall the exact words of conversations. It is just about impossible for me. In this journal, I have tried to capture exact quote where I can. In many case, I have retained the spirit of the words that Kate and I have spoken, but they aren’t always the same exact words we have uttered. The notable exception is the mention of phrases that are common place like “Let’s not talk about it” or “Tell me tomorrow.” All of this is to say that we just had an exchange that I wish I could capture in the literal words in which they were spoken. Here’s what happened.

As we walked out of Panera to return home, the sun was shining brightly. Kate put her hand up to protect her eyes. I said, “This is a good day for sunglasses.” Then I remembered that she had lost the two pair of sunglasses I had bought her recently. As it turned out, I found one hanging on a shrub the other day. After returning it to her, one of the lenses fell out. I told Kate I would have to see about getting her new ones.

When we got in the car, she said, “If I had a car, I could get my own.” Then she mentioned other things she could do if she had a car. I told her I knew that she missed having a car. We exchanged a few comments about my willingness to take her places. Then she said, “How would you feel if you were the one without a car, and I had to take you everywhere.?” I told her I wouldn’t like and would feel dependent. As I continued to talk, she said, “I’m not listening.” It wasn’t mean-spirited, but I knew it was clear that she wanted me to stop.

What I think is significant is that Kate does not talk much at all about how she is feeling. Much of what I know about her feelings I pick up from observation. This particular conversation is an indication of her continued struggle to hold on to her independence. This goes far beyond having a car, but it seems like the car is an obvious symbol of her dependence. I should not be surprised at this. I do recognize that having the freedom that a car provides is very important for many of us who are aging.