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Quiet Time With My Music

We had our usual lunch at Bluefish today. We had missed last week because of our trip to Fort Worth for her cousin’s funeral. I had thought about calling our server to let her know we wouldn’t be there but was caught up in all the preparations for the trip. I wondered if she would be worried. It turns out she was. She told us she has a number of customers who come in on a regular basis, but we are the most predictable. She knows about Kate’s diagnosis and wondered if we had run into a problem of some kind. (I tell most of our servers about Kate. I feel it is important for them to know in case something unusual happens. The most common thing is getting lost on her return from the restroom.) Anyway, our server was relieved that we were all right and gave us our usual hugs as we came in and when we left. The only other server who does that is the one at the restaurant where we eat on Sunday.

Kate didn’t talk at all on the way to and from Bluefish. Nor did she say anything during lunch except in response to our server, and that was minimal. As soon as we returned to the house, she brushed her teeth and then got into bed. It’s been almost an hour and a half, and she is still in bed. This would not have been unusual two or three years ago, but since that time she has not been napping until very recently, especially since we got back from Fort Worth. I have noted previously that she has recently shown other signs of decline. I can’t help wondering if we are in for something more in the upcoming months. We have been fortunate that her decline has been so gradual up to this point, but I am well aware that this can change at any time. Two friends who have lost their spouses in the past year to Alzheimer’s after they experienced a more sudden change that occurred in the last months of their lives.

I had washed clothes this morning and put them in the dryer before we left for lunch. When Kate started her nap, I put on a Chris Botti album, Impressions, and folded the clothes. As I have mentioned before, music has always been important to me. That has been especially true since Kate’s diagnosis. I find it very comforting. It’s also been a pleasant way to make a few last-minute edits to my blog for its launch tomorrow.

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A Humorous Moment

Before coming to Panera, I noticed that Kate had put on her pants inside-out. I mentioned it to he rand  then went to get her iPad to take with us. When I returned to the kitchen, she had already gone to the car. After we had been at Panera almost an hour, she got up, and smiled, and said, “I think I should put my pants on the right way.” That was the first time that I had noticed she hadn’t changed at the house. When she hadn’t returned to the table in the time I expected, I got up to look for her. It is not unusual for her to forget where we are and take a seat at another table until I find her. I didn’t see her and turned around to return to our table. When I did, I saw her walking toward me. I said, “I guess you got your pants taken care of.” She chuckled and said, “Why do you think I went to the restroom?” This is one of those light-hearted moments we have frequently even though it could be frustrating to Kate and sad for me. It is one of the ways we both cope.

That reminds me of a phone call I received from a friend yesterday. I have known him in connection with our volunteer service for many years. We first met at Junior Achievement when we served on its board. Later, we worked together at United Way and then the foundation of the UT Medical Center. His wife was an Alzheimer’s patient who died a year ago. He calls once in a while to check on me. This time he let me know that he is going to get married in May.

As we talked, I filled him in on our lives. I said something about Kate’s asking me things (for example, names of family members or close friends) that she would not be as likely to ask other people. It was interesting to hear his response. He knew exactly what I was talking about and the feeling you get when that happens. We both feel that it comes from the trust she feels because of the closeness of our relationship. In that respect, he and I both acknowledged a sense of gratitude and closeness that we feel when these things happen.

For me, it is especially interesting in that Kate still does not talk about her Alzheimer’s in any direct way. She never mentions it anymore, but she is not at all guarded or hesitant to say many things that are obviously symptoms of the disease. I often wonder if she makes any connection between her symptoms and her diagnosis. I really think she doesn’t. I would like to know, but I feel it doesn’t serve any good purpose for me to inquire. She is happy. I want her to stay that way.

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A Very Good Day

Kate got up somewhat later yesterday morning, about 8:45. We were at Panera just before 10:00. She worked quietly on her iPad until a little before 11:00 when she was ready to go home. This is a time when she usually would work outside until lunch, but she came inside and lay down in bed. I think she was still a little tired from our trip last weekend. In addition, she had gotten to bed a little later the night before. The weather has improved but is still somewhat cool. That may have also played a part.

I wondered how long she might rest. I didn’t want her to take too long because we had planned a trip to Nashville for a late afternoon visit with Ann and Jeff Davis. Fortunately, she got up at 11:30 and was ready to go. Originally, we had also planned to see Ellen, but her daughter sent me a text the night before saying that she was sick. We hadn’t seen the Davises since before Christmas; so I decided to go ahead.

We both enjoyed visiting with Ann and Jeff. Our relationship goes back to Madison when Jeff and I were both grad students in sociology. Later, we both joined the faculty at UT. Both couples had daughters the same age, and we used to get together very frequently until they moved away. We have continued to enjoy periodic visits with them either in Nashville or Knoxville. During the past few years, I have tried to be more deliberate in arranging visits because it means a lot to Kate and to me. I realize that it won’t be much longer until our visits are much different than in the past. Of course, they aren’t the same now. Yesterday, Kate said very little, but she was comfortable. It appeared that she was getting along well. On the way home, she confirmed that it had been a nice visit. I agreed. It had been another nice day.

Kate’s recent decline in memory has increased my motivation to arrange other visits with the Robinsons and the Greeleys. Both couples live in Nashville as well. As I look to the future, I am unable to predict just how Kate will change and how that will impact our activities. I do remember that my dad took my mom with him wherever he went except his Kiwanis meetings up until her last week or so when she was bed ridden. In his case, they were not traveling out of town. My plan for us is to continue taking it one day at a time. That has worked for us so far. I hope it will serve us well in the months ahead.

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Very Tired Today

Kate was in bed by 7:30 last night and was up about 8:45 this morning. She was in a very pleasant mood when we made our morning trip to Panera. She did something unusual. She brought three books with her. That is interesting because she doesn’t read. It also surprised me that she was taking them to Panera where she spends her time working jigsaw puzzles on her iPad. She only took one of them inside, It was a book about the history of our church. She did actually spend a short time looking through it. After an hour there, she said she was ready to go home. As soon as she came inside, she went directly to our bedroom where she took off her coat and got into bed. That is the second time she has done that since we returned from Texas Monday night. While this was a very common occurrence a few years back, this is most unusual nowadays. In fact, occasionally when I have thought she was tired and asked if she would like to lie down, she has said she feared sleeping too long.

She is clearly acting differently. She is having more trouble with names and shows some confusion. Yesterday she received a touching letter from her brother, Ken, along with a gift of a spinner. He noted that one of his sons gave him one for his last birthday. He keeps it by the coffee pot and spins it each time he makes coffee. He also indicated that it is a time of reflection in which he thinks about “family, friends, and the ‘circles of life’ that have brought me to my current understanding of my life.” He says it is a time for counting blessings and giving thanks. Then he suggested to Kate that “every time you ‘take a spin,’ think of the people you love. And know that I will be thinking of you and Richard every time I spin.”

Before leaving for Panera, I read the letter to Kate and showed her the spinner. We were both moved by his loving words. For me, it was especially touching as I realize just how far Kate is into her journey with Alzheimer’s and that Ken is at an earlier stage of this journey. Life and the people we love are more precious to all of us who travel this path, and we have lots of sentimental moments.

When I finished reading the letter to Kate, she said, “Now who is this from?” This was a painful moment that reminds me of the reality of this disease and where we are. Life is not the way it used to be, and the toughest part remains ahead.

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Post-Trip Symptoms

Kate was very tired when she returned home on Monday. She was in bed with eyes closed before 7:30. Yesterday she was up at 7:30 and ready for Panera shortly after 8:30. She wanted to come back home after an hour and got back in the bed where she remained another hour before wanting to go back to Panera. During the balance of the day she got along normally. She was in bed about her usual time last night, around 8:30. This morning she slept until after 10:00. We were so late getting to Panera that I ordered lunch along with Kate’s usual muffin.

This was the day for the sitter, so I made sure that we were back home before her arrival just before 1:00. I went to the Y and then made a stop by the grocery before meeting Mark Harrington for coffee. We talked about my blog that I intend to launch this Sunday, the seventh anniversary of Kate’s diagnosis.

When I got home and the sitter had left, Kate was ready to leave the house. She picked up her iPad and got her coat. She didn’t say anything. I know the signs. They signal she wants/expects us to leave for someplace, usually Panera. This has become something of a habit on the days when the sitter comes. I am sure that is because a good bit of her time with the sitter is spent at the house, especially right now when the weather is quite cold. My presence is her sign that she can go back to Panera. Often it is only 30-45 minutes before we go to dinner. That was the case today.

Until this point, I felt everything was going well. At dinner, however, she asked me where we were. I thought she meant the restaurant and told her. She gave me a look that told me that wasn’t it. I said, “We’re in Knoxville.” To the best of my knowledge she has only asked that question when we were traveling in another city; so I was surprised. During the meal, she asked me the name of the restaurant and the owners of the restaurant. She never remembers these, so I wasn’t surprised at that. As we were finishing our meal, she asked me the way we would walk out of the restaurant. I pointed to the front door. In another minute, she asked me where we were. Once again, I told her we were in Knoxville. After paying the check, she again asked me where we would leave the restaurant. I pointed to the front door and got up. I said, “Follow me. I’ll show you.”

When we got home, she got ready for bed, put up her iPad and got under the covers about 7:30. I am wondering if these things are in any way caused by our travel over the weekend, or if this is just another sign of her decline that would have occurred anyway. Regardless of the specific cause, for me it is a sign of change and in a direction that I don’t like. It tells me that 2018 is going to be a different kind of year.

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Memory, Confusion, and Dependence

Earlier today I mentioned an experience at lunch when she didn’t recall that her cousin Chester had died and that we had attended his funeral two days ago. That is a rather dramatic experience that she would have recalled several years ago. I am still somewhat surprised that it didn’t ring a bell at lunch.

Before going to dinner this evening, I told her again about the pictures I had sent her Ken and Virginia as well as our son. She said, “You should also send them to Chester.” I told her that he had died last week. She said, “We were just with him.” I assume she was referring to this past weekend and said, “We were there for his funeral service.” She hadn’t remembered. This is clearly a change from several months ago. I have been noticing the change and commenting on it, but it is still somewhat surprising when she says things like this.

Her increasing loss of short-term memory is not the only change. She seems more reflective. She talks more about the past, her family, our relationship, and about me specifically. She expresses more appreciation for the things I do for her. She is also much more accepting of my suggestions regarding her clothes or whether she can work outside and, if so, where and with the clippers.

In general, I would say there is a striking change in her dependence, acceptance of her dependence, on me. She accepts  my help more readily and even asks for it. That is especially true with respect to her clothes. For example, for quite some time, she has put on clothes that are backwards or inside-out. That seems to be more of a problem now than in the past. Today,  she has asked me to help her with her coat when she couldn’t easily put it on. Tonight, she started to put on her night gown. She said, “Wait a minute, I might need your help with this.” She was holding it up and trying to decide which was the top and which was the bottom of the gown as well as the front and back. She started getting frustrated and asked me to do it. I finally put my hand through each of the sleeves and grabbed her hands and guided them through. I can see that this is going to be worse very soon. She got into bed and then said, “I can’t live without you,” something she has said many times along the way. Right now, it takes on a more serious meaning.

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Special Moments

For most of the progression of Kate’s Alzheimer’s, she has been less talkative than she used to be. That has meant a significant change in our conversations. We often spend most of our time together in silence whether at home, during meals, or in the car. That has required an adjustment on my part since I am more of a talker. My parents talked constantly. I recall times when they had talked while my dad was getting ready to leave for work. and then again as soon as he reached the shop.

Kate’s and my conversations were never like those of my parents, but I would say they were probably similar to that of most couples. Talking requires too much of Kate. It is not uncommon for her to ask me tell her tomorrow what I was about to say right then. That ends the conversation.

Once in a while, however, she does want to talk. When she does, I welcome and encourage it. The subject matter is usually the same. She talks about her family and us as a couple. That was the case while we were at lunch today. I said something about the pictures I had taken over the weekend in Texas and mentioned her cousin Chester. When I did, she said something that let me know that she didn’t remember his passing away last week and attending his memorial service just two days ago. I often just let things like this pass, but I told her that Chester had died and that we had just returned from Texas. Then she said something about remembering being in Texas.

From that prompt, she said, “I’m really glad you got to know my family.” I told her I was glad too and that it had given me an appreciation for large, close-knit families. She continued the conversation talking about her father. She always speaks fondly of him, but she talks more about her mother. Then she talked about us. She mentioned how well things have always gone for us. I concurred. We both talked about Kate’s father having married a girl from out of state and her doing the same. We talked about the places we had lived and the excitement of each stage of our lives. Naturally, that included having children.

It was a very slow and tender conversation. I wasn’t just listening but participating. It is one of those special times that come along periodically. They always remind me that some of the best times we ever have are those that occur spontaneously and involve simple pleasures like today’s very ordinary lunch. She won’t remember it, but I will.

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Trip Report

We returned home just before 7:00 p.m. tonight after spending three nights in Fort Worth. As I have suggested in other posts while we were gone, I am very glad we made the trip. Kate enjoyed seeing her extended family. She didn’t, and still doesn’t, remember most of the names, but she has a strong emotional tie to her family. In recent years, as her short-term memory has faded away, much of her conversation with others has drifted toward family. Most of that has been about her mother but has included her father and her extended family. I didn’t imagine her having another opportunity to share special moments with them. While it is unfortunate that this one was prompted by her cousin Chester’s death, it is in times of loss that family ties seem especially important. In this respect, the weekend could not have been better.

Travel is, however, demanding for Kate, and I must admit something of a challenge for me as well. I envision that it is a combination of these things that will ultimately cause us to curtail it. For Kate, there is a certain amount of pressure or stress in being in strange places and with large numbers of people she doesn’t remember. She made it through Saturday beautifully. At the visitation on Saturday evening, one of her extended family members and I noticed her in conversation with another member of the family. She appeared to be an equal participant in the conversation. I suspect she didn’t know who she was talking with, but I am sure he conveyed either directly or indirectly that he is part of the family. She obviously was quite comfortable with him. This is also true for her with most people, especially if their interaction is brief.

Nonetheless, it requires a lot of effort to “perform” in this way. She has been very tired the past two days. She went to bed around 8:30 Saturday night. I had to wake her up at 10:00 Sunday morning so that we could meet several family members for a lunch to celebrate Kate’s 77th birthday. She didn’t want to get up, but she did. Slowly, but she got up, and we arrived in ample time for her celebration.

I had originally planned to stay in Fort Worth last night. Knowing that it is sometimes difficult for her to get going in the morning, I changed my mind and made reservations in a hotel near the airport in Dallas. That way there would be less rushing to make our flight at 12:15. That turned out to be a wise decision. She was asleep by 8:00 last night, and she slept until 9:00 when I woke her up this morning. Although she would have preferred to stay in bed, she was very cooperative in getting up, and we were able to leave for the airport at 10:00. That gave us time to get something to eat before our flight.

Everything else went smoothly on the way home. We arrived a few minutes early in Atlanta, and our flight from Atlanta to Knoxville was right on time. We stopped by Chalupas to get a bite to eat before coming home. It was almost 7:00 p.m. when we got to the house. I went back to our bedroom around 7:15. Kate was already in bed. She was wearing a robe that was inside-out as happens a good bit. Using hand signals, she asked me to get her a night gown. I brought one to her. She stood up to take off the robe and put the gown on. I started to unpack some things and noticed that she was putting on the robe again, the right way, and had not put on her gown. I mentioned it, and she put the gown on.

That kind of confusion is common, but I believe travel adds an extra measure of confusion because of the unfamiliar surroundings, especially when we are moving from one unfamiliar place to another as people do when they travel. She often asks where we are when we travel. That was different this time. I only recall two times that she asked, “Where are we?” One of those was at dinner at the hotel in Dallas last night. The other was when we got off the plane in Knoxville and were walking to baggage claim. As many times as we have walked through that airport, she didn’t recognize it.

It is impossible for me to understand how stressful travel is for her because she never talks about it. I don’t know how much of this relates to her general preference not to dwell on her Alzheimer’s or if she really doesn’t sense the stress. I believe it is the latter. I think she forgets she has Alzheimer’s except when it comes up at one of her doctor’s appointments. That makes me think that at the very least she doesn’t connect her diagnosis with her experiences.

For me, the most challenging aspect of travel involves airports. That includes going through security. I find myself focusing on getting all the things that need to go through the scanner unloaded and then putting those things back on or in my clothes on the other side. Kate is often confused by the instructions given by the personnel; so I have to watch for that. It is hard enough for me to remember to take everything of mine that has been scanned. Now I have to make sure I have her things as well.

I wish the security check were the most difficult part of travel for me. It is not. It is changing planes in Atlanta that is the challenge. I fear losing her as I did the other day. I can’t tell you how stressful that was. There are so many people and places that it is very hard to find someone.

Another concern is use of the restroom. It takes her a long time in the bathrooms at home, but in an airport there is a substantial challenge. I have already identified family restrooms in the Atlanta airport and may soon try those.

One additional issue with travel is getting from one place to another in a timely fashion. She has only one speed, and it is very slow. At home, I can control much of this because I try to avoid as many specific time commitments as I can. That works pretty well. When we are traveling, you have flight schedules that are not flexible. In addition, when other people are involved, it often involves a set time to meet. This always means planning in advance to make sure we are on time or reasonably close.

When you add up all these things, and I am not beginning to remember the many little things that come up when traveling, I can see why some people stop traveling long before we have. Even with that, I am not ready to call it quits. I still want to make at least one more trip to Texas. If that one is half as successful as the one we just took, I might think about another. My head tells me that it is unlikely that we will do any more airline travel after the next six months, but my head has been wrong before. I hope it will be once again.

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Kate’s 77th Birthday

Yesterday was Kate’s birthday, and I hadn’t envisioned much of a celebration since we were in Fort Worth for the memorial service and related events surrounding the passing of her cousin, Chester. It turned out, however, that we didn’t have anything scheduled until the family gathered together at 1:30 before the service at 2:00. Kate’s cousin Sharon asked if she could take Kate to lunch as a birthday treat. Together we turned that into a larger gathering to include Kate’s brother, Ken, and his wife, Virginia, as well as our son Kevin’s family. It was a special treat to have another cousin of Kate’s who is from Massachusetts. She hasn’t attended as many family gatherings over the years, and it was nice to visit with her.

Sharon made arrangements for lunch at a restaurant that was close to the church. The lunch turned out to be a perfect way to recognize Kate who hadn’t remembered it was her birthday. Ken and Virginia got us off to a good start by ordering Saganaki, a Greek flaming appetizer. That started the celebration with a little flare, or should I say flame. All of us got out our cameras/phones to capture the flames. That was followed by lots of visiting and good food. It was special for her to share those moments with people who are so special to her. When we got in the car to drive to the church, I said, “Happy Birthday.” Kate said, “Oh, is it my birthday? I didn’t know.”

We met in the Franklin Center of the Methodist church where Kate’s family had been members for so long. Her grandparents’ home had stood on a portion of the property now occupied by the church. The Center has a display of some of the things from the home. Kate loved looking at these things as if for the first time. In her mind it was exactly that.

It was a beautiful service and especially moving for Kate. Family has always been important to her, and Chester was significant for a number of reasons. He had remained in Fort Worth as the rest of the family had made their way to other places. Family was very important to him. We saw him as someone who kept the family memories alive in the place where Kate’s grandparents had made their mark in the early part of the twentieth century. Chester had also been very active in the community in a variety of ways. The church was packed to honor him.

Following the service we spent a little time with Ken and Virginia. Then they went back to their home in San Angelo. We checked into a hotel near the airport for our flight out shortly after noon today. Kate is sleeping soundly. I will probably wake her in another hour or so. I would like to leave for the airport around 10:00. As we leave today, I am feeling good that Kate has had this time with the larger family. That is not something I had thought would happen. She won’t remember it, but each moment meant a lot to her.

 

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Celebrating the Life of Kate’s Cousin

Our first day back in Fort Worth was a day filled with reunions with family, some we hadn’t seen in many years and a few we had never met. We were brought together to celebrate the life of Kate’s cousin, Chester Hendricks. We attended a private graveside service with family on a cold morning that was offset by the warmth of this family reunion. As someone who came from a very small family, my mother, father, and brother and a few others whom we rarely saw, I’ve always been struck by the emotional ties that bind the Franklin family together. Today’s gathering brought back memories of the early days when I was introduced to the family. By now, of course, those who were the senior generation are no longer with us, and the rest of us have spread to other places.

When we first heard the news of Chester’s passing, I knew this was a time for Kate to be with family. Chester was four years older than Kate, but they had grown up together and shared many family times. Despite the challenges of travel with Kate, yesterday’s experience confirmed that coming back was the right thing to do.

At the graveside service, about half of the family were seated under the canopy while others gathered around the edges. Kate and her cousin, Sharon Billings, took a seat. I started to join them but did not because I didn’t want to disturb the two oldest members of the family who were seated in two chairs I would have had to go through. As the minister made his remarks, I noticed that Kate was wiping tears from her eyes. Sharon reached in her purse for a tissue and then put her arm around Kate. There have only been a few occasions when I have seen Kate cry. She was obviously very moved. I felt a need to be beside her and made my way to her side.

I can never know exactly what she is thinking or feeling. I do know that she can’t remember most of the family who were in attendance or even that we are in Fort Worth. On the other hand, she understands she is with family, and, in that moment, she remembered Chester. While that emotion lasted only for the duration of the service, it was clear that she was saddened. Her tears brought back moments at Christmas when we were in Lubbock with Kevin’s family. She seemed to be experiencing a sense of melancholy as she reflected on the past.

Chester was buried in the family plot. After the service, Kate and I walked around to see the headstones of some of the other family members who are buried there. We lingered over those of her mother and father and an infant daughter who died two years before Kate was born. She didn’t remember the infant daughter’s death. Over the past few years she had talked about that daughter’s passing and that it was something she had not realized as a child. I pointed out the two spaces where our ashes are to be buried.

The family gathered for lunch at one of Chester’s favorite barbeque places. Then we returned to the hotel until 3:45 when we met Kevin and his family at a nearby Panera. We came back to the hotel to meet Ken and Virginia and one of Kate’s cousins, Ethel Longfort. From there we attended Chester’s visitation. There was a much larger crowd than the family we had been with earlier in the day. There were literally hundreds there to pay their respects to Chester who had been very active in business, church, and civic affairs in Fort Worth for all of his adult life. It had been a very good day. I am so glad Kate was able to be here.