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.

The Sitter as Guard

201711-01 (9:01 pm).

Things continue to go well with the sitter. There are two actually, one on Monday and another who comes on Wednesday and Friday. For a variety of reasons, this is the first week that I have had someone for all three of those days. Today Mary was on duty. She had greeted Kate outside before checking in with me. I gave her a gift card that she could use if she and Kate wanted to go over to Panera. Mary went outside to be with Kate while I got myself ready to leave to donate platelets.

Before driving off, I went out to the yard to say goodbye. Kate was on the ground cleaning out a flower bed. I told her I was leaving and said, “ don’t have to worry about you, do I?” She answered emphatically, but with humor, and pointing to Mary, “No, I have a guard.” I left feeling all was well. I’m feeling good.

Miscellaneous

Our first day back in Nashville was a pleasant one. Kate’s good mood has continued. The sitter came in the afternoon. I didn’t mention to Kate that she was coming. She arrived while Kate was in the backyard, and I was getting ready to leave for the Y. Once again, Kate received her warmly, and I was off. Before leaving, I told the sitter that she had a 5:00 appointment for a massage. I asked her to make sure that Kate came to get ready around 4:00. When I returned, they were both sitting in the family room where Kate was looking at one of her family albums.

As we finished our dinner last night, I asked her if she would like dessert. She often gets a scoop of homemade gelato that we share. She told me that she had had enough and would skip the dessert. Then she asked me. I told her that I had eaten so much on our trip that it would be good for me to pass it up. Just then, our server approached the table and asked if we wanted dessert. Kate immediately asked, “What do you have?” Of course, she ended up with her gelato. This is not an unusual event. She frequently says she is going to do something and then turns around and does something else. This is hard for those of us with a memory to understand, but for her, it is as natural as breathing.

On the way home, out of the blue she asked, “Are we moving into the new house tomorrow?” I hesitated a moment. Then I said, “We won’t be moving right away.” I didn’t pursue the topic. I don’t know what motivated it. She must have been thinking again that we had talked about moving into a new house.

Incidental Happenings

2017-10-23 (7:44 pm)

Yesterday afternoon Kate and I went to a skilled nursing facility for a visit with the mother of a friend who lives near us in Tennessee. The friend’s mother invited us to have a seat. Kate took hers on a love seat with a table beside it. The friends mother had glass of water on the table. Apparently, she had been drinking it before we arrived. As we were talking, Kate up the glass and took a drink out of it. Our friends mother picked it up and took it to the kitchen and brought Kate a fresh glass of water. I chuckled to myself because I have had this experience quite a number of times.

Tonight we are staying in a hotel near the airport in Nashville where we will catch our plane home in the morning. We drove to a pizza place near the hotel. When I opened the door to the car for Kate, I noticed that she had taken her glass from the restaurant. I called attention to it and returned it. This is not the first time this has happened. It is not a typical thing but there have been as many as five times she has done this at restaurants.

Thoughts on Caregiving

Over the past two days, I have heard the stories of two different caregivers of people with dementia. I have identified with both of them. In each instance, the dominant message involved their loving relationships. This is in striking contrast to the many posts that I read on the Caregivers Forum on the Alzheimer’s Association website and the Memory People group on Facebook. I have trouble identifying with so many of those because they are written by people whose patience has reached its limits. They are tired, frustrated, and often angry, if not at the person with dementia, with other family members.

I have stated many times in this journal that Kate and I have been very fortunate. While we face many of the classic issues accompanying Alzheimer’s (forgetfulness, losing things, dressing, toilet issues, etc.), we have not had to deal with problems created by family members, having to simultaneously work and also care for the person with dementia (PWD), and trying personality issues.

This is a reminder to me that the situations in which the caregiver and PWD find themselves are as different as those that all families encounter. When things go well (as they have for Kate and me), one is prone to believe there is something special about the way we have handled the situation. It often leads to our telling others how they should do things.

I don’t want this journal to be guilty of that. I feel for those who have faced the greatest of challenges with this disease. If there is something that others might glean from our experiences, I am happy. I don’t, however, want to suggest that others should do what we have done or that what has worked for us will work for everyone. All of us begin with our own assets and liabilities. From there we try work out the best plan for ourselves. That is what we have done.  I think that is all any of us can do. As I have said, Kate and I are fortunate. We have faced many of the typical trials and tribulations of Alzheimer’s, but we have not (yet) faced some of the most difficult ones. My heart goes out to those of you who find yourselves in a very different situation.

A Funny Incident

2017-10-17 (4:47 am) 

Something funny

About 45 minutes ago, I got up to go to the bathroom. When I got back in bed, Kate was up. Nothing unusual about that. She frequently gets up to go to the bathroom at this time of morning. Then I heard her in the kitchen. Next thing I knew was that she had come back into the bedroom with a glass of apple juice in one hand and a container of yogurt in the other. This was at 4:15 a.m. She turned on the light followed by the TV. I looked over at her and asked (in a very non-threatening way), “What are you doing?” She answered, “Having my breakfast.” I pointed out that it was 4:15. She said, “So?” About five minutes later, she was again ready for bed, turned off the TV and light, and got under the covers as if this were the regular routine.

This brought back quite a few funny moments with my dad. He frequently woke up in the middle of the night and didn’t realize what time it was. When he did, I, along with my brother and two or three close friends, received phone calls from him. I’m glad that all of us were able to accept this habit humorously.

We leave for Texas today, and there are still a few odds and ends that I need to take care of before going to the airport. This will give me a little time for that.

 

Two Interesting Things

2017-10-16 (10:31 am)      

I have been a frequent reader of the posts of the members of Memory People, a closed group of people with dementia, their caregivers, or anyone else with an interest in dementia. Last night I read one that caught my attention. Many of the posts are written by caregivers expressing a range of emotions from sadness, to frustration, to anger as well as a modest share of more touching stories about the ones for whom they care. This one falls in the latter category. I was especially happy to read it because it sounded so much like something I could have written about Kate and me.

I replied to his post and thanked him. He replied to me and mentioned that he had planned to go to Wake Forest but ended up at the University of Wisconsin because of a nice scholarship they awarded. I suspect he must have checked my Facebook profile and seen that I had graduated from Wake. I responded to him and said that Wake and Wisconsin had been special places for us as Kate and I had met at Wake, and our first move was to Madison. What an interesting coincidence.

I checked further to learn that he is pastor of a Baptist church within a 100 miles of Nashville. I wonder if we will have other communications. I will certainly look for other posts he writes.

The second experience occurred this morning at Panera. Upon our arrival, we stopped at a table where two regulars were seated. We got into a conversation. At one point, one of the men mentioned to the other that we were getting ready to make a trip to Wake Forest. Kate had a big look of surprise and said enthusiastically, “We are? You didn’t tell me that!”

Her response surprised me, not because she had forgotten that we were leaving tomorrow. Even tomorrow morning, she won’t remember when we are going. I did, however, think that she would remember that we were going soon. We have been talking about it and the fact that she will be seeing cousins, her grandson who is a freshman, our son, and a number of friends from elementary school. It was humorous as well because I knew that the man who brought it up knew that I had told Kate about the trip. 

 

Our Story

Kate and I met in the fall of 1960 while students at Texas Christian University. I was a junior. She was a sophomore transfer from Stetson. We met at a Sunday night social at the home of another student and high school friend of Kate’s. Apart from meeting, neither of us remembers anything else about that night or any contact that we had between then and December 19, 1961, when we had our first date. I took her to a performance of Handel’s Messiah. We had no idea that would be married almost 18 months later.

In some ways, we were from two different worlds. Kate was born and raised in Fort Worth, Texas. I was born and raised in West Palm Beach, Florida. Her father was from a family of 8 children, 6 of them lived their entire lives in Fort Worth. Only one of the eight children lived out of state. That meant Kate grew up with lots of aunts, uncles, and cousins. I, on the other hand, had no relatives living in my home town except my mother, father, and brother. I had grandparents who lived in Tallahassee along with an uncle and two cousins, but we rarely saw them. My other grandmother lived in St. Louis and stayed with us during the winter. We both grew up in Methodist families, but her family was more actively involved in church than mine. In addition, West Palm Beach was a much more secular place than Fort Worth.

Our first date came near the end of the first semester of my senior year. I had taken a part time job at a funeral home at the beginning of the second semester. This job turned out to play a central role in our courtship. I was on a tight budget; so I didn’t have much money to spend on dating. The funeral home offered a couple of perks that helped me. First, as flowers were transported from the funeral home to the cemetery, there were always some that came loose from the bouquets or stands on which they were fixed. Sometimes I would pick up a carnation or rose and drop by the campus to place it in the driver’s seat of Kate’s car. Another benefit involved my occasional trips to another city to pick up a body and bring it back to the funeral home for a service and burial. When I was on these trips, the company paid for my meals. They let me take Kate along and picked up her meal as well. We would have a nice dinner. Then we stopped by the funeral home to pick up the body, and bring it back to Fort Worth. Looking back, it’s hard for me to believe that Kate’s parents never had a problem with this. At least they never said anything.

Kate and I married on May 31, 1963, and lived in Fort Worth the next two years. We both pursued master’s degrees at TCU, she in English and I in sociology. She taught English at a local high school. I had an assistantship in sociology for which I taught a couple of introductory courses. Upon the completion of my M.A. in the summer of 1965, we moved to Madison, Wisconsin,  where I started a Ph.D. program in sociology at the University of Wisconsin. Kate took a job as a secretary to the director of graduate admissions in the English department while finishing her master’s thesis. She received her M.A. in 1967. We both considered our three years in Madison as a very special period in our marriage. We felt like this was the first time for us to be on our own since we had lived our first two years in Kate’s hometown. Neither of us had ever been to Madison before that July afternoon we drove into the city. The university, the town, and the friends we made there changed our lives in lasting ways.

Because there were so many spouses applying for teaching positions in the public schools in that area, Kate was unable to get a teaching job. That turned out to be a good thing. She became a secretary to the director of graduate admissions in the Department of English. He was quite a scholar and a very interesting man. He and his parents, German Jews, left their home country in 1938 as Hitler’s persecution of Jews intensified. Several years later, one of her friends at TCU married her boss, and Kate kept up with him until his death in 2015. This relationship provided Kate with a strong bond to the university even though she was not a student there.

In July 1968, we moved to Raleigh, North Carolina where I took a position as Assistant Professor of Sociology at NC State. Like the move to Madison, this one signaled the opening of a new chapter of our lives. I was beginning my professional career, and Kate was pregnant with our first child, a daughter, when we made the move. Two years later our son was born. During the Spring of 1971, I joined the faculty of the Department of Sociology at the University of Tennessee. So off we went to a new adventure in Knoxville where we have lived for the past 47 years.

I taught at the university for seven years while Kate cared for our two children at home until they were in preschool. Like most other parents, our lives were wrapped up with our children. Kate, who didn’t cook at all before marriage, became quite a cook afterwards. Just about everything she learned came from her mother who had reputation as an excellent cook and hostess. Not everything she knew about cooking came from her mother though. During the early 1970s, she became a fan of Adele Davis. She also took great interest in our childrens’ diets. She wanted them to have snacks that were nutritional. She used to make homemade yogurt regularly and mixed it with orange juice for frozen popsicles. She made homemade whole wheat bread and pizza with whole wheat crusts.

When our second child was about a year away from first grade, she enrolled in a master’s program in library science. She completed her second master’s degree in 1977 and began a career as a librarian/media specialist with the public school system. As she did, I left teaching to embark on a career in my own market research business that continued until my retirement in 2012.

In 1990, shortly after her father died, Kate retired from the public school system and became a volunteer librarian at our church. This turned out to be a fulfilling position for her. She was well qualified professionally with an M.A. in English and a second master’s in Library Science. Beyond this her background in church and her personality made her a natural for this position. She loved working with the staff and the members, especially the children. She served in this position 19 years. Her only reason for retiring was her Alzheimer’s. That made her work more challenging. She just couldn’t handle it in the way she had done in the past.

As a volunteer, her work provided her a good bit of flexibility that she hadn’t had with the school system. That is important because my professional career involved a lot of travel. Occasionally, especially if I had a meeting in New York, she would travel with me. Either before or after my business obligations, we would enjoy ourselves. In New York that meant attending Broadway shows.

It was also a time when both of our children had graduated from college and establishing their own families. In 1998, our first grandchild was born. Since that time we have added 4 others, twin boys for our daughter and her husband and 2 sons and a daughter for our son and his wife. Up until the oldest was 15 or 16, they visited us one child at a time for a week each summer except for our daughter’s twins. They always came together.

Sometime around 2006 Kate began to exhibit the first signs of Alzheimer’s. She recognized  that her memory was not as good as it used to be. I tried to reassure her and repeatedly told her that we all develop greater diffculty remembering things as we age. I wasn’t just saying this; I really believed it. As time passed, I noticed other things that were signs that she wasn’t the same. I couldn’t put my finger on it. I just thought that her behavior patterns didn’t seem as functional as they used to be. For example, we ate dinner out more frequently now that the children were away, but now she wasn’t preparing for dinner on a regular basis. That led me to start a little cooking myself. I also began to take out food from several different restaurants. She wasn’t as careful about clutter around the house. In addition, she was frequently misplacing or losing things.

Kate has always been directionally challenged. Now, however, she was having difficulty remembering how to get to places that she had grown accustomed to going in the past. I would received calls at the office that she was lost and seeking my help getting her where she wanted to go.

By the summer of 2011, both of us began to realize her symptoms were more than what we should expect with aging. We decided she should have a discussion with her doctor at her next appointment in December.  Her doctor recommended that she get a PET scan and arrange a psychological analysis with someone who specializes in diagnosing dementia.

Her doctor arranged these appointments. On January 21, 2011, we both went to see her doctor who was to tell us the results of her scan. That is when we received confirmation of what we had been suspecting a long time. She had Alzheimer’s disease.

We couldn’t imagine the changes that we would face in the years ahead., but we immediately committed ourselves to making the most of our time together. That included taking care of a variety practical matters as well as the really important things like what we wanted our lives to be like in the years ahead.

I will have to say that Kate is the one who was determined to get a diagnosis. I didn’t fully understand what a difference that knowing would make as we planned for the future. It turned out that knowing for sure that she had Alzheimer’s, changed my outlook toward Kate and her behavior. I now understood that she couldn’t control the things she was doing or not doing. I stopped blaming her. Knowing that our time was going to be shorter than I had thought caused me to value more deeply all our moments together. It also led me to take much more initiative in planning things we could do. That included travel, attending many concerts and theatrical performances, eating out more frequently and making mealtime a social occasion, and spending time with friends.

At the time of this writing, I believe Kate is in the early part of Stage 6 of the 7-stage model of Alzheimer’s. (See the Alzheimer’s Association’s website for more information.) I am satisfied that we have achieved our goals. Of course, we haven’t been able to avoid the changes that Kate has made as a result of the Alzheimer’s. We have, however, been able to live full lives.  In this respect, we have been more fortunate than many couples who face this disease. We have enjoyed life throughout our marriage and have been doing the same as we continue Living With Alzheimer’s.

Strange Behavior

We got back home from dinner about 25 minutes ago. After we got inside I asked Kate if she would like to watch one of the BBC programs I had recorded. She said she would. I turned the TV on and moved the chairs in front of the TV in the family room. A few minutes later she walked through the family room with her pill box, toothpaste, and night guard. I thought she said, “I’m going to take my medicine.” As I was sitting here in front of the TV, she came into the family room and said, “I’m taking my underwear.” I looked up and saw that she had underwear in her hand. She also had a pair of men’s trousers in her arms. I had bought them for her to wear outside when she works in the yard. I told her we weren’t going anywhere. She said, “Oh, that’s good.” Then she turned around and went back to her room. I haven’t heard from her since. That has been about 10 minutes. This is not the first time she has imagined my telling her we were either going somewhere, that someone was coming here, or something similar. I am beginning to wonder if this might not be something I see more of in the months ahead.

Closing the Day

I just got home from a United Way dinner where they recognize the humanitarian of the year. I was there along with a number of others from the foundation because our previous board chair was this year’s selection.

At any rate when I got home at 10:00, I was surprised when I walked into the bedroom to discover that Kate was awake. When I expressed my surprise, She told me it had been hard to stay awake, that she had gotten up and walked around and also gotten a Dr. Pepper, but she stayed awake because I wanted her to. When I explored this a little, I learned that she thought I had told her to stay awake until I got home. We hadn’t even talked about it though I had joked at dinner and said, “Now don’t get into any trouble while I am gone.” I suspect this led to her incorrectly remembering what I had said and altered it to be that I told her not to go to sleep.

Now she has been wide awake. She has been a little irritated because it is my fault that she is awake. She said she was going to tell my next wife what I am like. As in most situations like this, she doesn’t sound serious. It’s her way of kidding me, but it does have a tone of seriousness as well. This is different from those times when she gets angry with me because she thinks I am rushing her to get ready to go someplace. That is definitely serious.