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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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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.

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Off to Fort Worth

Kate and I are at the Knoxville airport waiting to board a flight to Texas via Atlanta. This was not a planned trip. We were saddened this week with the death of one of Kate’s cousins, the senior member of the Franklin family who still live in Fort Worth. They are having a graveside service with the family tomorrow and a memorial service at the church Sunday afternoon.

As I was making the flight arrangements, I was attentive to the challenges of rushing Kate in the morning. I felt a 12:15 flight would present little trouble. I was mostly right, but it was a morning when Kate didn’t want to get up. Shortly after 9:00, I went in to wake her. With some gentle encouragement, she was up about 9:20. To make things as easy as possible, I laid out her clothes on the bed in her office. I had everything from underwear to shoes and socks.

I gave her enough time to have a leisurely shower. Then I went back to check on her. She hadn’t dressed, but she had thrown the clothes I put out into a pile on the bed. I showed her the clothes and left to give her time to dress. When she came out, she wasn’t wearing the top I picked out. It was a very light weight summer top. Knowing that we were heading into cold temperatures in Texas. I suggested she change tops. She groaned but agreed to comply.

She always walks very slowly, but this morning she seemed even slower. The person at the security check point noticed and asked if she would need a wheelchair. Kate was insulted. After going through security, I noticed that she was not wearing matching socks; so I knew she hadn’t worn the socks I put with her shoes. Then I looked more closely and saw that she was not wearing the shoes I picked out. Fortunately, these kinds of things are minor, but they also are a sign of the challenges of travel. I really don’t know how long we can take airline flights. I want to make one additional trip back to Texas in the spring. At the moment, I feel good about the possibility of being able to do it. That could easily be our last trip by plane.

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Thoughts on Future Travel

Travel has been a significant part of our marriage. When our children were 4 and 2, we made our first trip to Europe. We did it “on the cheap” as they used to say. We didn’t stay in a single place that had a full bathroom in our room. We always had to go down the hall to bathe. The remarkable part is that our son was still in diapers, and that was before disposable diapers were popular. Kate washed diapers by hand for six weeks. We spent one summer in South America when the children were 6 and 4. That was a time when I was involved with a program called Partners of the Americas. The children don’t remember much about it, but it was a great experience for us.

When the children left home, we began to travel a little more. We stepped that up a bit after Kate’s diagnosis in 2011. We knew, of course, that it couldn’t last. Our last international trip was to Switzerland in 2015, not including a Carribean cruise in January 2016. These last two trips signaled the end of our trips out of the country.

We have continued to travel longer than I expected when she was diagnosed. It seems like each trip we take now makes me believe that we are approaching the end of all but short car trips. That would include the trip we just completed. Kate, of course, does not remember anything about the trip; however, I am sensitive to the challenges it introduces for her as well as for me. I am determined to keep it up as long as it seems wise, but we are much closer to the end.

Even before our recent trip to Texas, I believed that would be our last. I wasn’t really sure we would make it until the past few months. Before we left, I was disappointed that we hadn’t been able to spend more time with Kate’s brother Ken, and his wife, Virginia. I began to think of making another trip back sometime in the spring. I’ve already mentioned this to them and to our son, Kevin. I would make it a combined trip to both Lubbock and San Angelo. One never knows exactly what lies ahead, but I believe it is important to make this one. I also believe we may be able to make an auto trip to Memphis to see our daughter and her family. That may also be in the spring. That is as far out as I am willing to project at this point.

I’m not ready to hazard a guess as to how long we will continue our visits with friends in Nashville. I intend to keep visiting as long as it is possible. I think those are important for Kate as well as for me.

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Coming Home

I am glad to report that our travel home yesterday was uneventful, that is, we had no trouble at all. Anytime we are facing activities or appointments that have definite time demands like airline flights, I worry a little about making sure Kate is ready. It may seem strange, but we actually encounter fewer problems like that now than in the past. I find that Kate really works harder to get ready than she used to. That is part of a general pattern. It is as though she recognizes that she is not in control and feels the need to work harder. I don’t mean that she appears frantic about it. It is just that she seems more attentive to doing things “the way they should be done.” For example, until Alzheimer’s began to take its toll, she always made up the bed shortly after she got up. Over the years I have heard her say, “My mother taught me to always make up the bed.” She stopped that for quite a while. Within the last six months she has begun to partially make it up once in a while, not daily and not completely. She pulls the covers over the bed and throws the pillows in their approximate places. She also hangs her clothes up more regularly though she doesn’t hang them in what I consider to be the “proper places.” Although it saddens me somewhat to see that she has to work hard to do the right thing, I believe it is a good thing that she is taking more responsibility. She still wants to be independent. I want that to continue.

She was still sleeping soundly yesterday morning at 8:15 when I woke her up. Kevin came over for a short visit before we went to the airport. She didn’t want to get up, but she did without a complaint. Kevin dropped by at 9:15. She was ready, and I had everything packed. That gave us a brief time to be together before leaving at 10:00.

The rest of the trip went smoothly. We arrived in plenty of time. I had been a little worried that we might be rushed, but we had sufficient time to gas up the rental car, return it to Avis, check in, have lunch, and still be early enough to have some waiting time before boarding. This eliminated any potential stress that might have occurred otherwise.

We stopped by our favorite Mexican restaurant on the way home from the airport. Our server last night was a comparatively new one. It turns out that she is from Venezuela. I had a nice conversation with her entirely in Spanish. We told her that we had visited Venezuela many years ago. I think she liked that. We also bumped into an acquaintance from the Y. He was with his wife, children, and grandchildren. We had a nice conversation with them as well. For me it was just another reminder of the value of eating out.

Kate got into her night clothes pretty quickly and right into bed. She worked puzzles on her iPad for well over an hour before calling it quits for the evening. She and I both slept well although she coughed a good bit during the night. She seems better this morning, but we are both still struggling from the cold we got three to four weeks ago.

We got right back into our routine this morning. We made it to Panera about 9:30. Kate was ready to come home at 10:30. After a short break, she wanted to work in the yard despite the fact that it was 36 degrees. At least the sun is shining brightly. She has been out there almost an hour. I am about to call her in so that we can make our way to lunch.

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Boredom and the Need for a Change

Over the past few years I have come to recognize the value of a routine for Kate. As someone with a touch of OCD, I have always liked routine, but that is something that does not come natural to Kate. As I have assumed a greater role as the person in charge, I have guided us into a regular daily pattern of activities. That involves letting her sleep as long as she wants. Learning very early that she likes to get a change of scenery, I started taking her to Panera to get a muffin. This soon became a habit that she latched on to with ease. She likes getting out of the house. She likes the muffin, and the bonus is the social activity there. She doesn’t like to stay any one place for long whether she is at home or someplace else. If we get to Panera early, we are likely to get back home for a break before lunch. If the weather is agreeable, she will work outside until I let her know that it is lunch time. I established lunch to match my own preferences. We go anywhere between 11:30 and noon, sometimes slightly later. After lunch, she is likely to go back outside. She used to stay out as long as three to four hours. Nowadays, she is not outside longer than an hour and a half to two hours. That often leaves a span of time during which she likes to leave the house again. At first, I took her back to Panera. More recently, I have sometimes taken her to Barnes & Noble. We go to dinner between 5:30 and 6:00 and are usually back home between 6:45 and 7:15. Then comes the most relaxing part of the day for both of us. We go back to our bedroom. She usually gets ready for bed and takes a seat in her chair and works on her iPad. I sit in mine and watch the PBS Newshour that I record every night. Anywhere between 8:00 and 8:45, Kate is ready to get in bed. Sometimes she continues to work on her iPad in bed. Other times, she puts it up and goes to sleep.

My point is that this routine seems to minimize and relieve the boredom she feels if she spends too long at one task. That is especially true because there are so few things she is able to do on her own. I can easily understand. If I could only work on my iPad and go outside to pull leaves off the shrubs, I would be bored as well. It is remarkable to me that she is able to spend so much time on her iPad. It is only possible because we are changing locations throughout the day.

This brings me to comment about travel. At home the schedule takes care of itself. She gets along pretty well. When she is bored, we move to something else. That seems to work very well. When we are traveling to visit family, the routine is different. Often there is no set routine because our time is viewed as an opportunity to simply enjoy time together. The problem for her is that she is unable to fully participate in most of our group activities that involve conversation, games, or things like watching a football game.

This brings me to this afternoon. We didn’t arrive at Kevin’s house this morning until it was getting to be time for lunch. All of us went out for a nice lunch and came back to the house. I was hoping that Kate would take interest in a game Kevin’s family had learned from Kate’s cousin, Tina. She was never able to become engaged and went into the family room to work on her iPad. After playing the game a while, I went in to check on her. Her look conveyed she wanted to move on. I’ve learned to recognize it at home, at Panera, Barnes & Noble or visiting family on holidays. I decided it would be best for us to leave and took her to Panera. She was just fine. Before we were there an hour, she gave me the same look. I asked if she would like to return to the hotel. She did. We’ve been here about forty-five minutes. A few minutes ago, she closed her iPad and is resting on the sofa. She asked me not to let her go to sleep. We will leave soon for Kevin’s and then go to dinner.

I have heard other caregivers talk about the challenges of traveling with their loved ones. We have been very fortunate to travel as long as we have, but now I see that we are approaching the time when that will be a thing of the past. It is hard on her and demands a lot of me to watch out for her. It is also very confusing for her. She still is not sure where we are. Today at Kevin’s, she pulled away for a moment and asked, “Where do they live?” I told her once again that they live in Lubbock. Tonight at their home, she asked, “Who lives in this house?” I told her that Kevin and Rachel live there. As she was getting ready to turn out the light and go to bed, she asked, “Where is this?” I asked if she meant the city. She said yes. I told her again that it is Lubbock, but that she would not have to worry about where she was tomorrow when we were back home.

 

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Lost, But Only Momentarily

Kate and I are still in the breakfast area of the hotel though I expect to leave for Panera shortly. A few minutes ago, she asked the location of the restrooms. I told her and pointed in the direction of the hallway off the dining area. I watched as she walked away and noticed that she followed my directions and went down the hallway. I didn’t watch to see if she had any trouble finding the restroom. This was a replay of what happened yesterday. I watched for her to return and found that she had walked by the dining area into the main part of the lobby and was circling back. As she walked, she looked from right to left and back again trying to find me. Finally, our eyes met and she walked over. I said, “You found me.” She proudly acknowledged that she had. Then she smiled and said, “Well, I made one wrong turn.” Even though I was watching for her, I wasn’t worried about her. This is a fairly small area. I knew she would find me. Of course, by keeping an eye out, I could have quickly jumped in to steer her back on course.

This is a frequent occurrence. She never seems to be concerned. She just calmly looks around. In the event that she does not see me, she takes a seat and waits for me to find her. I have done so a number of times, sometimes with help. Recently, a server at a restaurant where we were dining approached my table and asked if my wife was with me. When I said yes, he told me she was sitting in a booth in the next room. I walked over where she was calmly waiting for me and brought her back to our table.

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A Common Occurrence

Kate and I are in the dining area of our hotel where she is having some juice and yogurt. She has her iPad with her as do I. She is still waking up even though she has been up almost an hour and had her shower. That is quite a contrast with my own morning pattern. I wake up ready to go immediately. This sometimes (often?) leads me to spring into conversation more quickly than she would like. That is especially true with her Alzheimer’s. She is much slower getting ready for social interaction in the morning. So here’s what happened a few minutes ago.

Last night I received an email from Ken in which he thanked Kevin and Rachel for hosting the Christmas dinner. He included several photos taken yesterday and attached them to his email. I hadn’t shown them to Kate last night because she had already gone to bed. While Kate was working a jigsaw puzzle on her iPad and eating her breakfast, I remembered the pictures and showed them to her. There were only four or five and had gotten through two or three when she said, “Do we have to do this now? Can’t we do it later?” I quickly realized I had misunderstood her priorities at that moment. She just wanted to relax quietly with her breakfast and iPad. I thought she would be eager to see the pictures. Once again, I was seeing things from my own perspective and not hers. She even said, “You always want to do things when you want to do them.” Herein lies one of the challenges for a caregiver of a person with dementia. You are always working to think of things to help but discovering that you aren’t always able to see things from the perspective of the one you want to help.