Yesterday’s Lunch Conversation

I wasn’t at all surprised that Kate was up earlier than usual yesterday morning. She had rested plenty the day before. She was also alert and even called me by name. She got ready early enough for us to make a trip to Panera before leaving for lunch.

It was an unusually pleasant and leisurely lunch that was a beautiful example of how much pleasure one can have living in the world of a person with dementia. We had at least a thirty-minute conversation that a listener might have found interesting without realizing that Kate has Alzheimer’s.

It began when I said something about a memory of a sailing trip my brother and I took in the Virgin Islands with our two sons when they were about twelve or thirteen. Kate often responds to something like this by saying, “Why didn’t you take me?” That prompted me to say that except for business trips it was the only trip I had ever taken without her.

As I started to tell her the story of that trip, I mentioned Kevin’s name. Our conversation seemed so normal that I assumed she knew that she was Kevin’s mother. Then she said, “You’re a father?” I told her I was and said, “And you’re a mother.” She scowled and said, “No, I’m not.” That led me to ask how she thought we were related. She said, “Friends. Good friends.” I said, “Who are living together.” She frowned and said, “I would not express it like that. I’m surprised that you would even say that.” I said, “Why not? We live together.” She said, “Yes, but you know what I mean.” I said, “We’ve lived together for a long time.” She said, “That’s different.” I asked if she would ever think about having children. She said, “I would like to have children some day but not yet.” Then she said something funny, but I can’t remember what. I said, “That’s one of the things I like about you. You can be funny.” She said, “Only around you. When I am with my girl friends, they don’t think I’m funny.”

About that time, I suggested it was time to leave. I said, “I love you.” I read her lips. She said, “I love you too.” And we left for home.

Day 2 of our Trip to Nashville

Yesterday’s visit with the Greeleys turned out well though Kate had a rough start first thing in the morning. Morning confusion is becoming more common now. That is especially understandable when she wakes up in a strange place.

As usual, I had gotten up a good while before she awoke about 8:30. She said, “Hey.” I walked over to the bed, and she said, “Who are you?” I asked if I looked familiar to her. She said I did. I gave her my name and told her I am her husband. She said, “Who am I?” When I told her, she wanted to know where she was and then why we were there. I explained about our coming to Nashville to see the Jan and Scott. She said, “Who?” I gave her the background to our friendship and specifically that she and Scott had been friends her entire life. Nothing rang a bell. I didn’t say anything about our having been with them the previous afternoon or having dinner with them. I relied on something I frequently tell her when we are at home. “It’s early in the morning. Sometimes you are confused when you wake up, especially when you are in a strange place. Once you are up you’ll feel better.” Then I told her it was still early and asked if she would like to get up or rest a little longer. She wanted to rest. I told her I would be just across the room at the desk and that I wouldn’t leave her. She said, “Good.” She woke up again two hours later. As she did earlier, she asked where she was and then why we were there. I went through the same explanation as I had done previously.

We checked out of our room in time to meet the Greeleys at our hotel for lunch. I didn’t want Kate to have to walk to the car and back, so I kept our suitcase and computer case with us until they arrived. I made a mistake when Jan and Scott walked in. I should have said, “Look Kate, it’s Jan and Scott Greeley.” Instead I greeted them as I always have. That would have worked in the past, but this time Kate needed me to remind her of their names and that we were having lunch together. Of course, I had told Jan before they arrived, but she had forgotten. When I realized, I called them by name, and Jan gave her name. Then I suggested that I take our things to the car and for the group to wait a moment. That is when Kate got up and said, “I’ll go with him.” That prompted Scott to say, “You don’t have that much. Why don’t we just take them with us to our table.” That worked well.

The lunch also went well. It was a buffet, and Kate and Scott remained at the table while Jan and I got our food. I also brought Kate’s to her. Even though it was not crowded, it was much easier than her doing it herself. Kate accepts this very naturally. This was not one of those times for independence.

As happens so often now, Kate asked that we repeat ourselves a number of times. This is commonplace. It is difficult for her to follow conversations. Even when we are alone, she asks me to speak more slowly. Apart from that and the insecurity she showed when I was about to leave her to put our things in the car, she enjoyed herself as did the rest of us.

Prior to the trip, Scott and I had exchanged emails in which he and I mentioned continuing care retirement communities. He told me that they were looking at one, and I told him about the commitment I had made to one in Knoxville. After lunch, I asked if he and Jan could drive us by the CCRC he had mentioned in his message. I might have expected that it would mean little to Kate, but it turned out to be a good thing. We not only drove around the campus, but we went into the main building. Kate loved the beauty of the place and took special note of the flowers both inside and outside. As I reflect on it, this was the kind of experience in which she can enjoy herself in the company of others without any pressure at all. She was free to walk around on her own and take in things without our pointing them out. It took away all the pressure that conversation represents for her. It may seem strange, but it reminds me of trips to the zoo. She enjoys looking around at things of beauty or special interest to her.

When we left for home, she mentioned how much she had enjoyed the Greeleys. She always has. I knew she would this time. It just took a little longer to feel at ease. I take that as another sign of the progression of her Alzheimer’s.

After dinner last night, we spent some time in the family room looking at the “Big Sister” album that Kate’s brother Ken had made for her a year ago. That has become far more important to her than he could ever imagine. She is enthralled by the cover picture of the two of them. She spends more time with that particular photo book more than any of the others. Last night, she went through it twice with me. I left to take a shower, and she started on it a third time. After my shower, she was still looking at it. I told her it was getting time for us to get ready for bed. She asked if she could take it with her. She held it in her arms and said, “I love it.” She was tired, however, and didn’t look at it again. She got ready and got in bed. She had had a full day and, except for her confusion in the morning, enjoyed every minute.

Kate was in an especially good mood yesterday.

Most of the time Kate is good-natured. That is one of the reasons life has gone so well for us. There are times when she is low. Those are usually times when she is more mindful of lack of memory and inability to function the way she should. There are other times when she is unusually upbeat. Most of the time, she is somewhere in between the two extremes.

Yesterday she was in an especially good mood, and it lasted the entire day. I’m having difficulty thinking of a word that captures it. There are two things that were different. The first is that she smiled a lot. The second is that she was very agreeable and easily “rolled with the punches” when things didn’t go her way. Yesterday was the first time she has had a sitter in three weeks. I wondered if she would feel uncomfortable when the sitter arrived and I left. That was no problem at all. She seemed happy to see the sitter and not bothered in the least when I left. The same was true when I got home. She was glad to see me, there was no sign of relief as sometimes happens. She just seemed happy and nothing could change that. Above all, I didn’t see any sign of concern over Alzheimer’s symptoms.

This is not to say that her memory was any better. In fact, she seemed so happy that I found myself thinking of her the way she was before Alzheimer’s. That was quickly erased when she would ask me something like “Where is the bathroom?” in our house. I did, however, get the impression that she remembered I was her husband all day or close to it. As we neared time for bed, she said, “I want to thank you for your patience with me.” I think that was prompted by my helping a number of times with her puzzles. Shortly after that she said something that clearly acknowledged that we were married. Just as quickly that was followed by her asking my name and hers. I was just grateful to see her so at ease and happy all day.

The Value of Social Connections

Maintaining social connections has been a major part of our therapy since Kate’s diagnosis. I have found it especially important in recent months as Kate has declined more significantly. Although she enjoys being with others as much I do, her pleasure is strictly in the moment. On the other hand, I enjoy the anticipation, the moment, and the memories. As a caregiver, being with other people lifts my spirits. I never heard my dad express it, but I know he must have felt the same way as he cared for my mother who had dementia.

Yesterday we drove to Asheville for what turned out to be a better than expected variety of social experiences. As I mentioned in my previous post, I thought it could be our last one and wanted to see a couple of people who had meant a lot to us on our previous visits. A few days before leaving, I learned that one of my Twitter friends and her husband were in Asheville and would be driving back home Sunday afternoon. I asked if we might meet before they left. We decided to get together at our hotel as soon as we arrived.

Our meeting went off without a hitch. I was eager to meet my friend and was eager to introduce her to Kate. This could have easily been a conversation between my friend and me, but she immediately looked straight at Kate and engaged in conversation with her. I was pleased to see that. It illustrated her sensitivity and comfort level with people with dementia. More importantly, she quickly established rapport with Kate. That set the stage for an hour-long conversation before they had to leave. As we were saying our goodbyes, my friend said something nice to Kate who was unable to respond verbally. The tears in her eyes said it all. She was touched by someone who entered her life as a stranger but left her feeling as though she were a longtime friend.

Our experience at dinner turned out to be another touching experience. We had another anniversary celebration. This time at a new restaurant but with a server who has taken care of us at three different places over the past few years. It was good to see her again. Just as I am telling you about her, she had told her associates, including the manager, about us. We met several of them and were very well-cared for. The meal itself was outstanding. At the end of the meal, we had quite a surprise. Our server said the evening was “on her.” She didn’t even accept a tip.

Experiences like these are bright spots in our lives. They sustain us through difficult times, and we have enough of them to keep us going. I feel grateful.

A Great Day

It seems like it’s been a while since I reported on having a great day. I’m really happy to report that we had one of those yesterday. It was a day of simple pleasures, but Kate was in a particularly good mood. She was happy and talkative. The only rough spot we had was when she got up. The first thing she said was “I want to get out of here.” I explained that we were at home and got her to look out the window to the back yard. She remembered it but said again that she wanted “to get out of here.”

Apart from that she got dressed, and she seemed to have forgotten about her eagerness to leave. In fact, she was ready to leave earlier than I wanted as the restaurant where we were having lunch doesn’t open until 11:30. I stalled a little bit. She waited happily until I was ready.

We had a 1:30 appointment at Starbucks with a representative of TCU. He was in town meeting with alumni. By chance, I noticed him at Carla’s where we had lunch. He was wearing a TCU lapel pin. Kate was excited to meet someone from TCU, and we spoke briefly while he waited to see another graduate.

We went home. It was during that time that she spent time with her Mother’s Day cards that I mentioned in my previous post. She closed her eyes for about ten minutes. I feared it might be difficult for her to get up when it was time to leave, but she got up quickly.

The day before I had sent the TCU rep an email letting him know about Kate’s Alzheimer’s. I didn’t want to depend on slipping him a card if she did or said something he might think strange. As it turned out, that was a good thing. As we talked, she forgot he was from TCU. Something came up about his job with the university. She was excited to learn (once again) that he worked there. He showed us pictures of his family and told us the names of his wife and three children. It wasn’t long after that when Kate asked his wife’s name again. That would probably gone unnoticed if she hadn’t asked his wife’s name three or four other times after that.

After I had ordered drinks for Kate and me, she whispered in my ear “How am I related to you?” I said, “I am your husband.” She said, “I was hoping you would say that.” During our meeting, she was very talkative and, for the most part, what she said was accurate. I believe it was knowing his connection to TCU that sparked her enthusiasm. We chatted for an hour, and I believe she talked at least as much as I did. I think she may have talked more. I deliberately held back a number of times to let her say what she had on her mind. I love seeing her when she is so enthusiastic.

She remained cheerful the balance of the day. She has seemed more childlike in the past few days. That was definitely so yesterday. That is sad as I know that is another sign of change. On the other hand, it is good to see her happy.

She commented on death a couple of times yesterday. One occurred as we walked from the car to the hair salon where she got a shampoo. I don’t remember what she said, but it started with “When I’m gone, I want you to . . .” I think I was so taken by the way she said it that I blanked on what she wanted me to do. During our meeting with the TCU rep, she said, “We all have to die. We might as well accept that.” It didn’t seem to fit in context with what we were talking about. I believe I may be overly sensitive about her recognition that something is wrong with her. When she talks about death, it makes me wonder if that is prompted by that recognition. Since she can’t remember things for very long, I doubt it. At the same time, her intuitive abilities are still sharp. Maybe she subconsciously senses she will go before me.

After dinner, we watched a YouTube video of a PROMS concert of music by Rodgers and Hammerstein. It was a good way to finish a very good day.

I hope today will be as good. She was up at 2:00 this morning and seemed rather clear-headed for that time of morning. She even called me by name a couple of times. As I walked her back to bed, she said, “Thank you. I really appreciate all that you do for me.” I said, “I do it because I love you. We’re a team. We always will be.” She agreed and said, “We’ll get through this.” That is something she says periodically. On several occasions, I have asked her what she meant. She said, “You know.” But I don’t. Could it mean her Alzheimer’s?

Still Having Fun

A little while ago, I posted a picture on Facebook. It was of Kate and me taken at lunch on Sunday with a rather large piece of chocolate cake in front of us. A friend asked if it was a special occasion. I replied that we make every day a special occasion. I really meant it as a playful response, but we really do make everyday situations special. In the middle of all Kate’s changes, we continue to have fun.

At the moment, I am thinking of experiences we had at lunch time today.
As we walked along the restaurant’s outside patio, I heard a song that was popular in the 60s and asked Kate if she would like to dance. She said, “No, but you can.” I took her up on it and started dancing while she watched. The song ended, and she applauded. We both laughed and opened the door. That’s when we saw several servers who had been watching us through the window. I felt a little silly, but they seemed to get a kick out of this old couple having a good time.

We had another moment of laughter when Kate asked the name of the restaurant. I said, “Tony’s Kitchen.” She tried to repeat it and said, “Tony’s Chicken.” That led to a few minutes during which I attempted to teach her that it was “Kitchen” not “Chicken.” I was never successful, but we both enjoyed a good laugh.

It’s spring, and Kate loves the azaleas. It is impossible for her to remember what they are called. She refers to them as “those pink flowers.” She has always enjoyed “the green” of trees, shrubs, and vines. The new growth of leaves on the trees has added to her pleasure. The beauty of spring makes even a routine drive to and from a restaurant special.

Moments like these are good for both of us. They help us maintain a positive outlook while “Living with Alzheimer’s.”

Our Weekend Trip to Nashville

Kate and I don’t travel much any more, but we did make an overnight trip to Nashville this past weekend. I have pretty much ruled out trips of anything more than a couple of days, so I’m glad to say that this one went well. We had a nice dinner at McCormick and Schmick’s after leaving the Davises. Kate turned in early while I watched the Texas Tech/Michigan State game.

When Kate woke up Sunday morning, she looked over at me at the desk where I was working on my laptop. I got up from my chair and walked toward her. She said, “Richard?” I said, “Yes, did you think I was someone else?” She said, “I was hoping it was you.” I said, “That must have been scary if you thought I might be someone else.” She said, “Not really scary, but . . .” She couldn’t think of the words to say what it was like, but she was definitely relieved to know it was me. This is just one more occasion when I try to imagine what it is like to wake up and not have any idea of where you are. Even though this happens to her at home, I feel sure there is a certain amount of comfort in being in “familiar” surroundings. Being in a hotel doesn’t offer that.

From there we went to brunch at Maggiano’s. When we checked in at the hostess stand, the managing partner was standing there. I don’t know what he said, but he and Kate got into a brief exchange in which each was kidding the other. I had a difficult time getting her away to follow the hostess to our table. It was one of those times that I pulled out one of my Alzheimer’s cards. Shortly after we were seated, the manager came to our table and thanked me. He said he had an aunt with dementia, and something Kate had said made him think she might as well.

Kate had brought a TCU magazine with her. He noticed that and said that he had worked in several restaurants in Texas. He and Kate connected once again. She enjoyed hearing him talk about her home state, especially since he had enjoyed his time there. Our server was very helpful with the menus that included both brunch and regular menu items. She was also very attentive. We were off to a good start. About mid-way through our meal, an assistant manager dropped by to check on us. We had a good conversation with her. When she left, she dropped a card for a free dessert. We took advantage of the offer and had an enormous piece of flowerless chocolate cake.

After eating, we were off to Ellen’s memory care facility. We had another good visit with her. We chatted for about an hour before turning to YouTube for music. This time we viewed segments from several Andre Rieu concerts. Once again, music played an important role in our visit. That is becoming more important as her ability to talk continues to decline though not too much since last time.

It was a successful trip. I will consider making Nashville an overnight trip in the future – at least as long as it works for Kate. Seeing friends in the afternoon, having a nice dinner that night, brunching at Maggiano’s, and visiting Ellen makes for a nice weekend.

Yesterday’s Mid-Day Conversations

Before, during, and after lunch yesterday, Kate was quite talkative. Not just talkative but engaging in conversation that might surprise someone who knows that she has Alzheimer’s and that her diagnosis was over eight years ago. Even I was a bit surprised. It began in the car when I played a Louis Armstrong album, What a Wonderful World. I said, ‘Isn’t it ironic that he sang that song while most of his life he couldn’t even stay in the same hotels where white celebrities stayed.” She asked why, and I explained about segregation. That led to a conversation about the civil rights movement. I knew she couldn’t remember any details, but she did have a recollection of that period of time and had strong feelings about it. She couldn’t understand why life was so segregated. We talked about the integration of public schools and how frightened the first black children must have felt as they entered their new schools. She said, “We’ve come a long way, but there is still a long way to go.”

At the restaurant I ordered the same salad I get every Saturday. It has mixed greens that I like, but yesterday it was different. It was overwhelmingly one particular type. The good news was it was one I like. One of the first times I had the salad I asked our server what it was. She didn’t know and asked several other staff who didn’t know either. Yesterday we had a new server. I asked her if she knew what it was. She didn’t and said she would ask the kitchen staff. Before she got back with their answer (No.), I googled types of greens and thought it might be endive. Then I googled “pictures of endive.” Bingo! That was it.

That led to another brief conversation. I said, “That’s a good illustration of how many things we don’t know, but we encounter every day.” That made me think about the curiosity of little children and how quickly they learn about the world around them. I mentioned that to Kate, and she agreed. Then she went on to talk about how children touch or pick up things that are new to them. She also talked about their asking questions of their parents. It was fascinating to listen to her. Her memory for names and places is virtually gone, but she clearly retains a memory for some general patterns of behavior like those of children. It’s no wonder that people with dementia can get along for such a long time before others recognize the problem.

On the way home, she kidded me about something. Then she said, “I think I’ve been around you too long.” She obviously remembered that I joke a good bit. I said, “Do you know how long?” She didn’t. I said, “In two months it will be fifty-six years since we married, and we dated a year and a half before then.” She said, “And I still love you.” I said, “And I love you.” There was a pause as I thought about the fact that she hadn’t asked my name since she got up. I rarely test her, but I said, “And I bet you remember my name.” It was her time to think. She finally gave up and said, “What is it?” I said, “Richard.” Then she said, “Richard Lee Creighton.” It isn’t often that my first name is all the prompt she needs to get the rest of my name, but it worked this time.

In our conversations, I see what Kate can (intuitive abilities) and can’t do (rational abilities). I am grateful that we derive so much pleasure from the intuitive ones.

A Nice End to a Good Week

It’s Sunday morning. Kate is still sleeping. I’m thinking about the good times we’ have had this week. Kate has experienced her normal confusion, but we have been active. Both of us have enjoyed ourselves. After our trip to Flatrock to see Jeanne Robertson, we arrived in Knoxville in time for our regular lunch at Bluefish. As the server walked away with our check, she stopped at the booth behind us and asked if they wanted dessert. Kate thought she was speaking to us and said, “What do you have?” Rather than call the server back, I told Kate that I would take her to Marble Slab on the way home. She thought that was a great idea. After eating our favorite ice cream concoctions, we went to the house. Kate was ready to rest. That was followed by working puzzles before going to dinner. Once home, we had a quiet evening watching YouTube video segments of Andre Rieu concerts. When we got into bed, we talked about what a good day it had been and how many good days we’ve had during our marriage. We finished the day like any other married couple would do. I said, “I love you.” She said, “I love you too.”

I treasure days like this.

Another Day of “Happy-Sad” Moments

For the second day in a row, Kate got up early. I was especially glad because she had a 10:30 appointment with her ophthalmologist. It was her final follow-up visit after her cataract surgery. I planned to wake her about 9:00. I knew even that might cause her to rush. I also assumed we wouldn’t have time to get her a muffin before the appointment. It turned out we didn’t need to rush at all. She got up at 8:00. That enabled us to stop by Panera for her muffin and work a few jigsaw puzzles before hand. We were early enough to see several people in the Catholic group that comes regularly after morning mass. It has been several months since we have seen the Baptists who have Bible study on Tuesdays from 9:30 to 10:30. I have heard indirectly that they have been asking about us.

The good news about the doctor’s appointment is that she said Kate’s eye had healed nicely. She also removed a stitch she had put in to protect the implant if Kate had forgotten she wasn’t supposed to rub her eye. That turned out to be a good plan. Testing her eyesight is almost impossible. Although she tested at 20/50 a month ago, she didn’t do as well two weeks ago. Yesterday was even worse. It is hard for her to know how to follow instructions and where to focus. They finally took her to another room where they were able to test her through digital technology.

Yesterday afternoon, we drove to North Carolina, to attend a show at the Flatrock Playhouse. On the way, Kate repeatedly asked where we were and where we were going. At this stage of her Alzheimer’s, it is simply impossible for her to remember things like this. Her brain won’t “allow” it. We also had one of those conversations in which we talk about about our marriage, our families, and the many experiences we have had followed by her asking my name and her name. As usual, she asked without any sense of frustration or concern. She just wanted to know. I never mind her asking. It’s those times she is troubled by not knowing that bother me. We had one of those later in the evening.

We made this trip at the invitation of a couple we know from Casa Bella. We have attended one other show at the Playhouse with them in the fall. Kate, of course, never remembers them, but she enjoys being with them. They are friendly people, and she feels comfortable with them. Last night’s performance was the comedienne Jeanne Robertson. This was the first time time in our marriage that we had attended a performance by a comic other than as part of a variety show on a cruise. Kate doesn’t generally take to comedians, and I was worried that she wouldn’t enjoy her. Before accepting the invitation I looked at a couple of YouTube segments of some of her other shows and decided it was worth a chance. I’m glad I did. Kate thoroughly enjoyed it. I am sure she didn’t understand much of it, but a good comedian is successful for much more than the exact words. She enjoyed it so much that I was a bit surprised when we saw Robertson in the lobby talking with others who had attended, and Kate had no idea who she was. That was true even after I explained that she was the one we had seen on stage in the auditorium.

As we walked to dinner and from dinner to the Playhouse, Kate whispered to me, “Where are we?” She repeated her question a number of times as well as when we went to our hotel for the night. When we got to our room, she said, “I sure am glad I’m with you. I have no idea where I am.” That was the beginning of a lengthy conversation that continued off and on for about an hour. She said, “I want you to know how much I appreciate what you do for me.” I told her that everything I do for her is because I love her. She was a bit teary but never broke into a full cry.

During the early part of the conversation, it sounded like she understood that she has Alzheimer’s. She said things like, “You’re the only one who knows what I am going through, and I even have trouble remembering your name. I do sometimes, but . . .” As she talked a little more, I learned that she was disturbed because she has lost “so many of my family.” She was worried that she had not done enough for them. I tried to encourage her. I reminded her of the way she had cared for her mother and how good we both felt about having her in our home the last years of her life.

On this particular trip she seemed to be less at ease in a strange place than at any other time. I’ve been looking for this on our previous trips but haven’t observed it. I’m not even sure about this one, but a few times she said, “I’ll be glad when we get home.” One of the reasons it is hard to determine if it is uneasiness about being in a strange place is that she sometime says the same thing when we are at home. In those cases, I don’t know if she thinks we are in Texas and wants to go to Knoxville or if she understands we are in Knoxville and wants to go home to Texas.

When I got ready to shower, she asked if it would be all right if she worked on her iPad. I told her that would be fine. She said, “Are you sure?” I told her this was a time she could relax and do whatever she wanted. I reminded her that we had no commitments in the morning, and she could sleep as late as she wanted.

It wasn’t until we turned out the lights and were in bed that she said, “Thank you. I’m beginning to relax now.” She continued to talk for a while. Then she drifted off to sleep. She slept until 5:00 this morning when she got up to go to the bathroom. When she got back in bed, she wanted to know “Where are we?” I told her, but she asked several more times. It took her a good while to get back to sleep. It is now 9:45. She is still sleeping soundly. If she doesn’t wake before, I will get her up around 11:00 so that we can get home early in the afternoon.

Considering everything, it was a very good day. She was in a good humor and enjoyed herself. She seems comfortable with the friends who invited us and loved the show last night. What more could I ask this long after her diagnosis? We continue to have good times. How fortunate we are.