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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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Lost in the Atlanta Airport

About 2:15, Kate went into the restroom at the Atlanta airport. As is my custom, I waited for her right at the entrance where she walked in. Ten or fifteen minutes passed (which is not unusual), and I began to be concerned. Our flight was scheduled to depart at 3:00. I started to look around the area to see if she might somehow have gotten out without my seeing her or her seeing me. That seemed impossible. Then I looked to my left and noticed another entrance/exit to the restroom. It hit me. She had come out that exit. Since she didn’t see me, she just walked out. Where she went was the question. I asked a couple of women who were going into the restroom to make sure she wasn’t still there. Then I approached an airport employee who suggested I ask a Delta agent. I walked over to the gate across from the restroom and saw two other airport employees. They both went into the restroom looking for her and calling her name. No luck.

In the meantime, I walked all the way down to the gate where our flight to Dallas was to board. Because her habit is to wait for me to find her, I looked at and around the seating area at each gate. I didn’t find her. Next the airport employee suggested that we page her. We went to a Delta help desk where they did that.

I decided to walk down to our gate one more time and look for her along the way. I discovered that our flight was about ten minutes late in boarding. That made me feel a little better. The employee who had been helping me walked to the gate. Then the two of us headed in the direction of the restroom, each of us looking at and around the seating areas. As we were nearing the restroom where all this drama began, I saw her sitting in one of these areas. She was very calm. She was simply waiting patiently for me to find her. What a relief.

By then, I thought surely we were too late to board, but we walked back to the gate. We got there as they were loading the last few passengers. As we waited in line to get on the plane, I asked Kate if she had been worried. She said she hadn’t, that she knew I would find her. I told her I had had her paged. She said, “I heard it. I thought it was a come on. Didn’t you think of that?” I told her I hadn’t. She said proudly, “Well, that was the first thing I thought of.” We got on the plane without anyone’s realizing there was a problem. We are now in our seats, and the plane is taxiing to the runway for departure. A near catastrophe averted.

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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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Still Appreciating Live Performances

Over the fifty-four-and-a-half years of our marriage, Kate and I have attended a wide range of live performances from Willie Nelson to Bette Miller to Billy Joel to Itzhak Perlman and Renee Fleming. Since Kate’s diagnosis seven years ago next week, we have made a special effort to enjoy the performing arts. We’ve also enjoyed movies, but as I have noted before, Kate is less and less able to appreciate them. That has made me wonder how long she would like the various musical performances we attend so often. I still don’t know the answer to that question, but I am optimistic that it will last a while.

We are now attending three musical events a month in addition to periodic events throughout the year. The three regular programs are opera on the first Thursday of the month, jazz on the second Thursday, and Broadway on the third Thursday. Last week it was opera. Tonight it was jazz. Kate thoroughly enjoys each one. Tonight as well as the previous jazz nights, we have known the clarinetist and trumpet player. They are both retired music faculty at UT and are well-known locally. Although she didn’t talk much with the people at our table, Kate also enjoyed being with them. We sat with two couples. One we sit with every time. The other couple was new to us, and we thoroughly enjoyed them. Programs like this give us both a lift. I am optimistic that we will continue to enjoy them in the future.

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Something’s on her mind.

I am sitting across the table from Kate at Panera. She is working a jigsaw puzzle. No surprises so far. A minute ago she said, “You know, you are the one person I trust.” I told her I wanted her to trust me always. She closed her eyes a minute. I asked if she were tired. She said she was, but she didn’t want to go home. Then she said, “I know your name.” There was a very slight pause, and she said, “Richard Creighton.” She hasn’t said anything since. She looks very tired. I wonder what she is thinking? What is on her mind? I would really like to know.

It is now a few minutes later. Kate said, “I’ll get out of it.” I stopped and looked at her and said, “Is there something I could help you with?” She said no.  Then she said, “i’m just kinda out of it.” In another few minutes, she said, “Lawrence Willcox.” He was a friend of ours at TCU. She didn’t say anything about him, just his name. I asked how she happened to think of him. She said, “I don’t know. It just came to me.” She seems to be in a very reflective mood.

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I’m surprised.

We are back at Panera for the second time today. We spent about two hours here this morning. We were back home by noon. It is a much warmer day today, so Kate wanted to work outside. She came in after a couple of hours and took a shower. Then she was ready to leave again. We arrived here about fifteen minutes ago and had a conversation with a medical student whom we had met before Christmas when he was here studying for his exams. When he left, Kate looked at me and asked, “What’s the name of this place?” I told her. Then she said, “I don’t know why I can’t remember that.” Then she tried to repeat but asked me to tell her the name again. She was having a hard time pronouncing it as though this were the first time she had ever heard the word. She was trying to pronounce it with a “T” rather than a “P.” I corrected her and she practiced saying it several times.

In some ways, I feel I shouldn’t be surprised. After all, she forgets most things. On the other hand, Panera is such a large part of our lives that it seems like a name she would hold on to for a while longer.

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Kate’s not the only one who forgets.

Kate has a nickname for me, “MM,” “My Memory.” I don’t really have a great memory, but she thinks so. Of course, compared to hers, it is fantastic. I am able to help her with most things she forgets. It is not unusual, however, for me to slip up. I did just that this afternoon. I completely forgot about our 3:00 appointments for haircuts. Fortunately, Dawn called about 3:05 to ask if she had made a mistake. I checked my calendar. I had entered it correctly. I just hadn’t looked at it.

Her phone call broke into a very peaceful and unusual moment. Kate and I had returned from lunch a few minutes before 2:00. It is the first nice day after almost a week of cold temperatures. For that reason, I fully expected Kate to head straight for the yard when we got home. Instead she came in the house and brushed her teeth. Then she brought her iPad into the family room and took a seat. When I saw her, I told her I would come in and join her. I put on some piano music by Andre Previn and sat down on the sofa with my laptop where I made my previous journal entry. We don’t have many moments like that. I think we were both enjoying it. I know I was. Thus, I had mixed feelings about Dawn’s call. I knew we had made a commitment to be there. I needed to have my haircut, and Kate was due for color. On the other hand, I hated to break the spell. I’ll remember that as a special time during which we didn’t say a word to each other. We just enjoyed quietly passing time together.

As I reflect on what I just said, I have to contradict myself. Every evening we have a similar experience when we return home from dinner. We go back to our bedroom where I sit in my chair and watch the PBS Newshour. Kate sits in her chair and works on her iPad. It is a very peaceful way to end the day. I think what struck me this afternoon was having the experience at that time of the day. Typically, when we are at home, Kate is outside, and I am inside.

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My Blog

It’s been a while since I have mentioned my blog. I am doing so now because I plan to launch it on January 21. That day will mark seven years since Kate’s diagnosis. I don’t know exactly when I decided to start a blog. I know that I had the idea in the early days of this journal. It wasn’t a serious thought at the time. I only intended to keep a record of our lives since the diagnosis. I didn’t know if or when I might make anything public.

My dad spent his last three and a half years in a skilled nursing facility following a stroke and several seizures. Prior to that, he had been a very active email correspondent. The stroke left him unable to use his computer. He had a list of 40-50 people to whom he sent email, mostly the kind that others had forwarded to him. I decided to keep up with these people by sending regular emails updating them on his life and how he was doing. I did this under his name with “And Scribe” typed under his name. In an early message, I explained that it was I who was writing the messages based on what I thought he might say if he could type them himself. I kept that up until the day he died. When I looked back at those emails, I saw that it was a beautiful account of his last years. It was filled with all the highs and lows of his life as well as everything in between. I copied all of them and the replies in a Word file with the thought that I might some day put them in a book. I actually did create an electronic book  although I have never published nor distributed it. That is something I still intend to do, probably on his next birthday on which he would have been 105. It was those emails that initiated my serious thoughts about a blog to capture our own experiences living with Alzheimer’s.

About two years ago, the idea began to take shape. I had read more about others’ experiences with Alzheimer’s and also talked with more people about our own. Upon hearing that I was keeping a journal, people often said, “You ought to write a book.” That provided an additional impetus to publish the journal in some form. Given today’s online world, a blog seemed a natural way to share it.

My first step was to secure an appropriate URL (LivingWithAlzheimer’s.com). I did that in November 2016. Since then I have been waiting for the right time to launch the site. Originally, I thought it would be in late summer or early Fall 2017. I soon discovered there were lots of things I had to do or consider before that would be possible. I enlisted the help of a friend and former colleague, Mark Harrington. He is a multi-talented guy who early in his career worked for a publisher before working as a writer in my company. He left us to work on his own as a writer and IT consultant. It is through him that I have been able to make it a reality. Mark has taken care of all the technical aspects to get the blog online. He has also been a great sounding board for me as I dealt with the many details that are required.

One of the things he recommended was that I read what I had written, something I had never done. I felt that he was right, but it is now over a thousand pages. That’s a lot of reading, and I haven’t yet read everything. In its present state, the site has the look it will have when it is launched to the online community. As of today, Mark has uploaded 706 journal entries. Among those, I have read, edited, and “published” 426. That leaves me with another 280 to read and edit before publishing. Mark has about a year and a half of entries to upload so that I can do my review and editing. There is no way that I will be able to do this before the launch date, but I am trying to get as much as possible done before then. I could, of course, change the launch date; however, I decided that many people will just read the current posts. I don’t expect many to start at the beginning in 2011 and read consecutively through the entire journal. No one is likely to do that.

I expect that 600 or more posts will be ready by the launch date. In addition to posting new entries, I will continue publishing the older posts that I have not completed by that time. Readers (assuming there are some) will be able to read just the new posts or read older posts by selecting them by date or category. I hope that will enable readers to pursue the subject matter that best matches their interests.

I have no idea how many people will visit the site. Even if no one does, I will feel good knowing that I have created an account of what living with Alzheimer’s has been like for Kate and me. It would be nice, however, if at least a few found it relevant to their own lives.

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Coordination Problems and Confusion

For someone like me having a schedule is helpful in getting things done. Since our return from Texas, Kate has been getting up later. That has meant getting to Panera has been later. That hasn’t presented a problem since I haven’t had any meetings or other obligations during the holidays. Today is different. I go back to Rotary. That means the sitter comes at noon instead of 1:00.
Today is different in another way. Kate got up earlier, probably related to the fact that she went to bed shortly after 7:00 last night. That influenced our morning schedule. We got to Panera earlier, and she wanted to come home before lunch. I generally try to get her to lunch at 11:00 so that we can be back for the sitter in plenty of time. When I went to our bedroom at 11:00, she was resting in bed. I asked if she would like a sandwich. She said she would rather stay in bed. I decided to let her remain in bed and that the sitter could take her to lunch.

A little after 11:15, she came into the kitchen with her coat on and iPad under her arm. She was ready to go back to Panera. Knowing that we might have difficulty getting back home in time for the sitter, I called the agency and asked the sitter to meet us at Panera, something I may establish as a regular routine. That would be a better way of handling the situation rather than rushing Kate.

Before leaving the house, she took a can of Dr. Pepper out of the refrigerator to take with her. She is particular about the mixture of Dr. Pepper she often gets out of the machine at Panera. When we got out of the car, I took the can of Dr. Pepper. When we got inside, I offered to get some ice. When I came back to the table, I pulled the can of Dr. Pepper out of my pocket and poured it into her cup. She said, “Aren’t you smart.” When I asked why, she indicated it was because I brought the Dr. Pepper for her. She had forgotten that it was she who had actually thought to bring it.

Then I left to go to the counter where I ordered her sandwich. As I returned to the table, I noticed Kate at the drink machine. She had emptied the Dr. Pepper, replaced the ice, and was getting another drink from the machine. When I asked about her Dr. Pepper, she had no recollection of having had one. I don’t know why she poured it out. I just let it go. She took a sip out of her drink. She didn’t like it and gave it to me to taste. She had gotten carbonated water. I went back to the machine and got her an Arnold Palmer. She is now happily working on her iPad while eating her lunch. She seems happy. So am I.

The major learning in this episode for me is that I should be prepared to let the sitter meet us here every week unless there are other reasons for doing otherwise. I can’t be too rigid with my own desire to stick to a regular schedule. By letting go, I will save myself a little stress.