An Interesting and Very Nice Day

Despite the fact that Kate was up at 6:00 yesterday, she was in a very good mood all day. In that respect, she was nothing like she was the day before. In fact, except for a little normal confusion immediately after getting up, she displayed relatively few of the obvious signs of her Alzheimer’s the way she has done in the past. She did ask my name once or twice at Panera but not once the rest of the day. In addition, she also mentioned our grandson, Brian, by name in an afternoon conversation without my saying anything to prompt her. She didn’t asked me where we are or the names of anyone else. She did ask me the name of the restaurant where we had lunch two or three times while we were there.

Of greater significance, is that we had a very good conversation when we got home after lunch. This is one of those times I wish I had a better memory. I would love to tell you exactly what she said. I’ll do the best I can to capture the moment.

As we drove up to our house, she said, “I remember this place.” I couldn’t be sure of what she meant. Right before this, she was talking about Madison. Did she think this was our place in Madison or simply that she recognized the house we live in now. Once in the house my uncertainty continued. She said something similar about the family room when we walked inside.

She was especially drawn to the back of the house and the trees on the property of the neighbor who live behind us. We sat down in the family room. Each of us had an iPad, but she continued to talk. I wanted to listen and support the conversation. She talked about our years in Madison when I was a graduate student. She commented about it’s having had a great impact on both of us. She said it was a time when we both grew up. Much of what she said comes from things I have said to her in the past, though not recently.

As in most other conversations, she talked about our marriage and how fortunate we have been, but there was something very different. In recent conversations, she has sounded like a nervous talker, just chattering away. This time she was so very normal and thoughtful as she spoke. There was no sign of concern or worry or fear about her memory loss. In many respects, she seemed quite normal. There was one difference that has become more common recently. The struggles with finding the right words to communicate what she wants to say. Often she says, “You know what I mean.” In most cases, she hasn’t told me enough for me to know. I find myself guessing what it was she wanted to say. More than half the time I guess after a few attempts. Other times, I don’t. Then she either drops the point she wanted to make or she goes on with the larger message she is talking about.

I found the conversation to be as rewarding as I found other recent ones to be sad. It was a good reminder that changes are not usually abrupt. They are gradual. They begin with something that happens on a single occasion and gradually become more commonplace.

We ended the day at Casa Bella for jazz night. We both enjoyed ourselves though as on other occasions, Kate was very quiet. There were six of us at our table, and four of us are talkers. Kate and one other woman tend to be on the quiet side.

I would love to see another day like that today.

Our Day So Far

I went to the bedroom to check on Kate about 10:30 this morning. I met her in the hallway as she was about to enter the bath off the guest room next to our bedroom. That is where she fell out of the shower the other day. I stopped her and suggested she shower in our bathroom. I feel it is safer and have steered her toward it each morning since her fall. I walked her into the bathroom and showed her the towels I had gotten out for her. As I was doing that she said, “What’s my name?” I told her and then left her to shower.

We left for lunch right after noon. As we drove to the restaurant, she asked my name. In a few minutes, she asked again. She asked again at the restaurant. Then she asked her name. After that, she asked if we have children. That led into a lot of reminiscing about our family and our marriage. Earlier this morning, I had seen a picture of a couple dining in the early evening on the riverside in Prague with the Charles River Bridge lit in the background. It reminded me of our trip there more than ten years ago. I told her a story of our sitting on the patio of a restaurant near where our friends’ picture was taken. Each table had a cup filled with peanuts. I looked at the table beside us and saw a bird eating the nuts on that table. Kate didn’t remember it but got a kick out of the story.

Over the course of our marriage, we have discovered that many special moments occur serendipitously in ordinary situations. This was one of those times. She seemed to enjoy my recounting of some of our travel experiences. I enjoyed remembering those good times myself. For the first time in quite a while, she addressed me as “MM,” My Memory. I told her I was happy to play that role.

On the way home, she reached over and put her hand on my arm and said, “You know what that means?” I said, “I do, and I feel the same way about you.” Then she said, “And I don’t even know my own name?”

It’s amazing how quickly the memory comes and goes.

Yesterday morning I left Kate in the kitchen to take her morning meds. In a moment, she called, “Richard.” I went in to see what she needed. She pointed to the pills. That was her hand signal asking if she was to take them. This (asking if she should take the pills I had just given her) is not unusual. What I noted was that she very easily called my name. That has happened on a few other occasions. In each instance, it seems like it occurred when she needed something. I wonder if the extent to which she needs me helps to trigger my name.

Not long after that we got out of the car at Panera. She asked my name. Then she repeated it several times. It’s unusual that she is able to do that. After taking our table, she asked my name three more times. Interestingly, I don’t recall her asking another time yesterday. Of course, we had a sitter for four hours, but we did go to dinner together and spent the evening at home together as well.

At the last minute, I decided to have a more special meal and went to Emilia. We didn’t even split a meal as we often do. Naturally, we topped it off with a dessert as well. It was a nice change from our usual Friday night meal. It felt good to do something special.

When we got home, she picked up the photo album her brother had made for her. I looked along with her. That turns out to be a good thing since she doesn’t always recognize the people in the photos. Most notably, it’s pictures of herself that she seems to be unsure of, but it is also true of just about everyone else. Of course, all of us have changed over time. It’s not as though we still look the same. She thoroughly enjoyed  going through it and turned back to the beginning immediately after spending about thirty minutes the first time. As in the past, there are several pictures of which she is especially fond. One is the cover photo of her and her brother. The other is a picture of her and her mother. She is particularly attentive to her mother’s smile but also comments on the smiles of others including herself. It made for a nice end of the day. I didn’t even select a DVD for us to watch. We relaxed a little in the bedroom before turning in for the night.

Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.

An Interesting Experience while Donating Platelets

While the sitter was with Kate yesterday, I donated platelets. I’ve been donating platelets for about three years following many years of whole blood donations, so I am acquainted with most of the people who work in that section of the department, and they know me. That makes the donation time a bit of a social occasion as well. Yesterday I got a bonus.

About an hour after I had been there, a woman took the chair (lounge?) next to me. Since my last visit two weeks ago, they have added individual TVs at each chair. I decided to pick out a DVD of Seabiscuit to pass the time instead of reading. It turned out the person getting me hooked up couldn’t get the TV working. I put the DVD beside me on the chair. The woman noticed the title and said it’s a good movie.

That led to a very pleasant hour of conversation. Because she had asked about Seabiscuit, I asked if she was “into” horses. She answered affirmatively, and we were “off to the races.” I didn’t mean to imply that I know much about horses and the culture surrounding them. I know next to nothing. I recently read Motherhood: Lost and Found by Ann Campanella. That may seem like an unlikely book for me, but it is her story of being a caregiver to her aging parents at the same time she was trying unsuccessfully to have a baby. So where do horses fit in? Well, it turns out that she has a passion for horses. She weaves stories of her and her horse along with her own story about her mother’s Alzheimer’s. As you can see, and Kate would confirm, I digress. I just wanted to say that was the extent of my knowledge of the horse world.

While I don’t know anything about horses, I do enjoy learning about the variety of things to which people devote themselves. So it turns out this woman, Irene, I believe, has been involved with horses most of her adult life. I had one question after another, and she had one informative answer after another.
It turns out that she is a fox hunter though retired for two years. She opened up a whole new world. I knew nothing about fox hunting clubs, the procedures followed on a hunt, that the people who run the clubs know where the foxes live, and that the foxes become accustomed to being hunted, and especially that some clubs don’t even use foxes at all but the scent of a fox to attract the dogs. I asked some dumb questions like “Do you actually kill the fox?” They don’t. (You probably knew that.) I found the conversation to be fascinating.

Beyond her interest in horses and fox hunting, she has owned her own construction business. Most recently, she has been a subcontractor in the construction of a power plant. I was glad that the TV was not working. This conversation was much more interesting.

As I left, I couldn’t help thinking of my dad. He would have enjoyed this conversation himself. He, too, was fascinated by such things. I might add that my brother, Larry, has similarly broad interests. The Creighton boys are easily entertained.

Yesterday was a nice day.

I hope my previous report didn’t make you think our days are no longer filled with good things to report. I think we’ll always experience good things. I am sure they will be different, but we’ll have them. In the meantime, we still derive a good bit of pleasure out of each day.

Kate was slow getting up again yesterday. We skipped Panera for the second day in a row and went directly to lunch. For about the third or fourth time in a row, we had dessert. I see a habit developing. Our server is now automatically telling us what they have and any special desserts for the day. There was a time that we rarely had a dessert after a meal. Now we have dessert at five of the restaurants we visit weekly.

Yesterday afternoon we went to our oldest community theater where they were performing Beauty and the Beast. Each summer they do a play or musical primarily for children. When our grandchildren used to visit, we would take them. Now we go by ourselves. Kate loved it.

From there we went straight to dinner at a Thai restaurant that is becoming our favorite Sunday night place. I ordered a dish that we have had before. This time I selected shrimp instead of chicken. Kate couldn’t stop talking about how good the sauce was. She loves rice, and I had saturated it with the sauce. I make a point of this because she rarely comments much about the meals we have except for the desserts. Her taste buds are still working.

Saturday night, we watched the first half of the 25th Anniversary concert of Les Miserables. Last night, we watched the second half. Kate was as taken with it as she was the first time she saw it. This was the fourth time we have seen it in four weeks.

We’re off to a good start this morning. Kate was up early enough for us to get to Panera right after 10:00. She is in a cheerful mood. Sometimes she likes to tease me. She is sitting across the table from me right now. A minute ago, she said, “If you just didn’t wear glasses, you’d be perfect.” I like that better than when she says, “You’re a nice guy, but you’re not handsome.”

As I was writing that last sentence, she said, “What is your name?” I told her. Within seconds, she said, “What’s the first name again?” Then she asked a third time. I told her, smiled, and said, “I love you.” She said, “I love you too.”

Kate’s father’s home movies were a hit again last night.

We had an early dinner last night. That worked out well because it gave us a little extra time before going to bed. We took part of that time to relax in the family room. After an hour, we decided to watch another DVD of her father’s home movies. The portion we watched last night was taken in the mid-to-late 1930s. Although that was before Kate’s birth in 1941, she had known almost all of the people. She was especially excited to see moving pictures of her mother and father. She also enjoyed seeing her grandmother who hosted a big family lunch on Sunday. She had eight children, most whom we married with children at this time, so there was always quite a crowd. We counted over fifteen who are no longer with us. Afterward they adjourned outside to relax and watch the children play. It was fun to see the people she has known as adults playing as children. It was another special way to close the day.

Sometimes the best moments are in the evening.

During the past few years, the evening has been our most consistently good time of the day. I say that in spite of the two recent anxiety attacks Kate has experienced. Mornings are a little different. Kate normally needs some time to fully wake up. I think that is one reason going to Panera has worked out well for her. She is able to eat her muffin leisurely while working on her iPad. She doesn’t have to enter into conversation except for the greeting of people we see there. Those are short-term encounters that give her a lift. That gives her a good hour or two to wake up Then she is ready for lunch. When she gets up unusually early, she sometimes wants to come back to the house to nap a little more. That used to happen frequently, not so often now.

I don’t know exactly why the time after dinner goes so well. I do know that I am more relaxed. I believe that is because I don’t feel as strong a need to entertain her. I think of this as a cooling down time. I’ve wondered if Kate doesn’t feel the same way. My recent purchase of DVDs of musicals and operas has certainly given us a regular activity for that time. When we don’t watch one of those, we spend an hour or so in the family room. I always put on some relaxing music that Kate and I both like.

Last night, I had something new for her. When we visited Kate’s brother and his wife in May, they gave us three VHS cassettes with home movies and videos for me to have converted to DVDs. They arrived yesterday. We watched one of them after coming home from our Monday night Mexican dinner.

This particular one consisted of highlights of a Franklin family reunion in 1982. I didn’t recall having seen this video before. I know that Kate didn’t remember. We both enjoyed seeing her parents as well as her aunts and cousins. As you would expect after 36 years, many of them have passed on. The children are grown up with families. It was a special treat for Kate and for me. When we finished, I noticed that she was still moved by what she had seen. I walked over to her chair, and we reminisced about her family and the good times we had with them. It was a beautiful way to spend the evening. What is best is that we have two others, each of which is a good bit longer. That should take care of us for several nights.

More Confusion, But a Good Day

Yesterday we went to Nashville to visit our friend, Ellen, who had a stroke three years ago next month. She had lived in Knoxville until that time. She had the stroke while visiting her daughter in Nashville and has never returned home. We try to visit about once a month. She is now living in a memory care facility. This is the fifth place she has lived since we started visiting her.

Kate got up a little later than I had wanted, so we ate lunch before leaving. When I hadn’t heard any signs that she was up, I went back to the bedroom to check on her. I discovered that she was up and taking a shower. I glanced in the bathroom door to see a mound of clothes on the floor in front of the shower. She often takes her clothes for the day into the bathroom while she showers. What was unusual this time was that she had a variety of clothes, mostly winter clothes. They also included four or five tops and a couple of pants. I came back to the kitchen. When I went back fifteen minutes later, she was sitting on the bed. The clothes that were previously on the floor of the bathroom were now on the bed. It turned out that she had everything but her underwear. I asked if she would like me to get them. She did. When I returned, she said, “Thank you, whatever your name is.” I asked if she would like me to tell her my name. She said yes, and I did. On the way to lunch, she asked my name. I told her and then said, “What is your name?” She took a moment to think and then answered correctly.

She was very quiet on the way to see Ellen. When we arrived, she said, “Does this place have a name?” I told her we were in Nashville and gave her the name of the facility. This way of asking for a name is becoming more frequent now. Mostly, she says, “Where are we?” She has a similar expression when we are at restaurants. She says, “Does this place serve food?” This is a sign that she is ready to eat and thinks the restaurant is taking too long. She has no concept of time, so usually, it hasn’t been long since we ordered that she asks the question. Sometimes it occurs right after the server has walked away after taking our order.

Our visit with Ellen was one of the best we have had. I wish I could say that is because Ellen has improved. That wasn’t the case. In fact, her speech seemed to be worse than the last time we visited a month ago. At the time of our first couple of visits almost three years ago it was very difficult to understand her at all. Over the next year, she improved a good bit, but I would say we were still unable to understand about a fourth of what she said. In February of this year, she had a couple of seizures. They affected her mobility and her speech. Yesterday we could understand very little of what she said.

We got off to a good start. When we walked into her room, Ellen was lying down on her bed. Although I know her daughter had told her we were coming, she had forgotten. She was quite surprised to see us and very emotional about our being there. I don’t know that I have mentioned that Ellen is a very outgoing, take charge kind of person who had many friends in Knoxville. Because so many of her friends are about her age and travel to Nashville is a bit much for many of them, she has had practically no visits from them. We know of only one other couple from Knoxville who has visited her. In addition, most of the others in her memory care unit are unable to converse much. She must be starved for conversation with friends.

It was interesting to watch Kate’s interaction with Ellen. She took much more initiative in the conversation than she has done previously. She brought up the fact that the two of them used to have lunch together every Monday while I was at Rotary. It is interesting that this memory has not disappeared. She remembers other things about our relationship with Ellen and her husband, Gordon, but only when I bring them up. The Monday lunch is more firmly embedded in her memory. Something else was different about Kate yesterday. There were quite a few times when Ellen struggled getting her words out. In almost every instance, Kate tried to encourage her. She said, “Just relax. Take your time. You’ll get it.”

After we had been there a good while, I asked Ellen if the staff played much music for the residents. She said they didn’t. I suspect she just doesn’t remember. Ellen had been a choir director for almost 40 years. She was also a singer and played the piano. We began to talk about music. I mentioned that I remembered her son’s singing “Danny Boy” at a piano recital when our children were taking lessons. Then I remembered that I had a recording of “Danny Boy” on my phone. I played it for her. All three of us enjoyed it. That led to my playing several other pieces. It was a nice interlude in our visit. The music was beautiful. Conversation for Ellen was challenging. We let the music speak for us. At one point, Ellen reached her hand out to Kate who clutched it. I could see tears in their eyes. It was a touching moment to watch and be a part of.

Not long after that one of the staff came in to get Ellen up for dinner. I asked if she knew Ellen was a musician. She didn’t know a thing about her background in music. When I told her she was surprised. She said she was glad to know and would pass that along to the activities director so that she could take advantage of that. I wonder how many people in places like this are not fully appreciated because the people working there have no knowledge of who they were before their memory problems. I suspect this is true for most.

We left Ellen’s and went directly to dinner before driving back home. We stopped at McCormick and Schmick’s. As we waited for our meal, Kate looked across at me, put her hands around her mouth like a megaphone, and mouthed the words “I love you.” I told her I love her too. Then she said, “Tell me your name.”

The ride home was unusual. Normally, we drive this distance with very few words. I usually play music that I know Kate will enjoy. Last night, she was talkative. In fact, we talked most of the way back home. It got its start as we were leaving the restaurant. Our daughter, Jesse, called to check in. She updated us on her family’s recent trip to Florida. Kate was happy to hear from her and to know they had a good trip with the family. That must have prompted her to think about the good things in our lives. She talked about our marriage and how fortunate we are to have found each other. She talked about both of our children. I reminded her that our son, Kevin, and his family have just returned from an exciting trip to the Grand Canyon, Bryce Canyon, and Zion National Park. It makes both of us happy to see our children enjoying life and moments like these with their children.

As we neared our home, Kate said she was tired. Then she mentioned she wanted “to do some work” before going to bed. She quickly added, “You know the kind of work I mean.” I did know, working on jigsaw puzzles on her iPad. We had had another good day.

Another Good Day

It really makes me happy to say we had another good day yesterday. First, Kate was up in just as good a mood as she did the day before. She was alert and cheerful from the beginning to the end of the day. She was also up a little earlier. I liked that because it gave us more time together.

She always enjoys watching children wherever we go. That is another pleasure deriving from her intuitive abilities. There are limits, however. She loves watching them play and explore their surroundings. She is taken with the things they say, especially when they express they wants to their parents. She was enjoying one little boy who wanted to run around. The mother tried to restrain him. That was cute until the boy screamed. Kate finds screams or any sudden noise startling and offensive. When the boy screamed, she jerked in her chair and said, “Now that’s not cute.”

We had lunch at the Bluefish Grill. It is almost 25 minutes away from where we live. On the drive, I always play music that I think she will enjoy. Yesterday I played selected songs from Les Miserables. Once again, she loved it. I played another album on the way back. She loved it as well.

We spent almost two hours at home after lunch. Kate went through an old photo book of her family. Then she worked jigsaw puzzles on her iPad. Of course, I had music that we both enjoy playing all the time. It was a pleasant time. Then she was ready to leave the house. We don’t often stay here for more than a couple of hours. There was still a good while before dinner, so I took her to Marble Slab for ice cream. We had stopped there earlier in the week. It is next to Panera, and we love ice cream. It’s surprising that we hadn’t been there in almost three years. I don’t intend to wait so long again. Then we went to Barnes & Noble where we remained until dinner.

We had a strange at dinner. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.” We went on with our conversation and had a good time.

She was unusually talkative last night. She talked mostly about us and our marriage, how happy we had been, how well-matched we are. That continued after we got home. She talked about how comfortable she felt with me and how much she liked being with me no matter what we are doing. I told her I felt exactly the same way about her.

I am happy to hear her talking and being so expressive. At the same time, I keep wondering about what is motivating her right now. I sense that she feels her world is getting smaller. She remembers fewer things, and that increases the value of the things she does know and can appreciate. That leads to the conclusion of our day.

We had started watching a DVD of Sound of Music the previous night. We had only watched about forty-five minutes of it before she was sleepy. We watched another hour of it last night. She loved Julie Andrews and talked about her looks, smile, and singing but couldn’t remember her name. She repeatedly asked me her name. I reminded her of the time she was at the Jeu de Paume and saw Julie with her daughter. She had no memory at all.

She loved the scenery in the movie as well as the acting. She was talking during the movie. At one point, she said, “I know this is silly, but I feel like God sent you to me.” I said, “I know what you mean. I feel the same way about you.”

A few minutes later, she said, “You know, you give me energy.” It didn’t last though. She was sleepy. We decided to stop the movie right there and pick it up tonight. She had had a good day. So had I.