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Yesterday’s Lunch-Time Conversation

At lunch yesterday, Kate asked my name and hers. I told her and then mentioned that we were married and have two children. Thinking that she might envision our children as little, I said, “They’re not really children now. Our daughter is fifty.” She was surprised and asked, “How old am I?” I told her we were both 78, and I would soon be 79. She said, “Well, you look it?” I said, “You think I look old?” She pointed at the hairline above my forehead and tried to say, “Look how your hair is receding.” She just couldn’t figure out how to say it.

Then she mentioned my glasses and asked if I always have to wear them. I said, “Only when I want to see you.” Then I told her I was getting new ones. She said, “Are they going to be bigger?” I said “The better to see you with, my dear.” She recognized the phrase and said, “Where did that come from?” I said, “Little Red Riding Hood” and recounted the portion of the story of the wolf in bed dressed up like Grandma. As I was telling it, I mentioned that the wolf had eaten Grandma. Kate reacted with horror and, rather loudly. said, “What?” Then I had second thoughts about the wolf’s having eaten her. I pulled out my phone and Googled “Little Red Riding Hood” and brought up the full story. I started reading it aloud to her. When I got to the part about the wolf, I quickly learned that I was right. The wolf really did eat Grandma. When I read that, she reacted exactly as she had before. It was quite noisy in the restaurant, so I don’t think anyone heard her. I didn’t see any need to get out “My Wife Has Alzheimer’s” cards. I continued to read. We were reminded that the wolf also ate Little Red Riding Hood, and the hunter cut open the wolf’s stomach and saved both Grandma and Red Riding Hood.

Kate was quite taken with the story and how gruesome it was. It’s hard for me to remember exactly what we said after that, but I said something about the changes in the way people look at such stories for children these days, that we take a more sanitized approach to them. It was not a conversation of great depth, but we did talk about how children generally accepted the gruesome elements as part of a fairy tail and focused on the entertaining aspects of the stories and their messages of morality. I was really taken by how engaged she was.

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What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.

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A Tender Moment This Morning

I looked at the clock. It was 5:45. As I rolled over to get up, I heard a soft chuckle. Kate often does this when she recognizes that I’m awake. I think it’s her way of saying, “Hello, I’m awake too, but I’m not ready for conversation.” I reached over and touched her arm. She pulled my arm around her. It was a loving response. She didn’t appear to be afraid. She just wanted to be held. Neither of us said a word. I held her until 6:15 when I got up.

As I was finishing up in the bathroom, she came in. When she was ready to go back to bed, she said, “What do I do now?” I told her it was still early and that she should go back to bed. She said, “Where is it?” I walked her to the bed. She sat down and said, “Thank you.” I said, “I love you.” She smiled and said, “I love you too.” Then, as so often happens, she said, “What’s your name?” This is just another example of the loss of her rational abilities while retaining those that are intuitive. In this case, her feelings for me. Tender moments like this continue to sustain me as her life and mine keep changing in ways I wish I could stop.

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A Winning Streak

We often hear about winning streaks in sports, but all of us have streaks in our everyday lives. We just don’t keep statistics in the same way. In the first place, we don’t usually categorize the various aspects of our lives. In sports we have such categories as consecutive wins, completed passes, passes without an interception, games with a hit, etc. Even if we did, we don’t go to the trouble of keeping records.

I’m thinking of streaks right now because Kate and I have had a streak of good days for over a week since she got over her cold. She’s still asleep, but I am optimistic that we will continue that streak today. A lot of little things make me feel a day has been good. Her happiness is probably at the top of the list. Something that goes along with that is the nature of our relationship. I work to avoid days when I have to push her to get places. Fortunately, she is good-natured. We work together well. Each of us wants to please the other.

The other day I saw something on Twitter that suggested a caregiver would do well to foster a sense of teamwork between himself and the person for whom he cares. I think that is very much the way Kate and I have worked together. When I push too much, she resists. She has her own sense of time and cannot hurry no matter what. Two days this past week, she had appointments with her ophthalmologist at 11:00 or shortly thereafter. For months, getting up that early has been a problem for her. This week I had no trouble at all. She was very cooperative even though she couldn’t remember why she had to see the eye doctor.

In addition to being cooperative, she is most appreciative. Those qualities are great reinforcers for me since I want to make her life as happy and trouble free as I can. Twice during the night we had experiences that illustrate how well this can go. The first occurred at 10:45 when she got up to go to the bathroom. I got up with her and walked with her. Then I did something that I haven’t done before and won’t do again. I usually wait with her. This time I decided to wait for her in bed. I didn’t expect to go back to sleep before she was finished, but I did. At 11:00, I looked up at the door to the bathroom and noticed that the door was closed. I got up to see if she was still in there. She wasn’t. I found her on the sofa in the family room. She couldn’t have been there long and was still awake. She was very glad to see me and said she didn’t know where to go. I said, “You must have been scared.” She said she was and thanked me. As we walked back to the bedroom, she thanked me again. All of this happened in the span of fifteen minutes, but it was an emotional experience for each of us. Each was glad to see the other, and we were happy as we got back in bed.

She got up a second time just before 6:00. I had just waked up myself and was about to get out of bed. I helped her to the bathroom and got her back to bed. As she always does, she repeatedly thanked me for showing her the way, helping her, and getting her back to bed. As she continues to decline, she is developing a greater sense of dependence on me. Her appreciative response makes me want to do the very best I can to make her life as easy and frustration free as possible.

So, after a string of good days, I don’t see any signs that it should be any different today. I won’t be keeping any statistics. They don’t really matter. What matters is that we are working together to make the very best of a diagnosis that no one wants. We’ve been successful thus far. I plan to keep that in mind as we approach the remaining part of our journey.

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Remarkably Upbeat and Alert

I’ll never know what caused Kate to be frightened yesterday morning or unusually upbeat and alert by the time we got to Panera for a muffin. The upbeat part made for a very nice day. I have already commented on our conversation at Panera. It was a special time for the two of us.

I should make clear that there was no difference in her memory. Her behavior was upbeat and normal, but her memory was essentially the same. Except for a few questions she was asked at her eye doctor’s appointment, she was never put on the spot to say anything related to any lost memories. She continued to ask where we are though she only asked my name and hers a few times during the whole day. In fact, she called me by name several times.

We had a special treat at lunch when our friends, the Greeleys from Nashville stopped for lunch on the way to visit friends in North Carolina. Kate handled the situation unusually well. Scott is Kate’s longest standing friend. Their relationship goes back to the cradle. When I told her that we were going to have lunch with Scott and Jan, her eyes lit up. She had a strong positive reaction, but she couldn’t really remember any specifics about them. Before meeting them, she asked me their names two or three times. After they arrived, we chatted briefly before they went to the restroom. Kate asked again what their names were. She did the same thing after we left the restaurant. On the other hand, she responded to them as warmly as ever. She clearly recognized them as good friends. They never put her on the spot to answer any questions. She also seemed to be unusually alert. She participated in the conversation and responded appropriately to things we talked about. Sometimes she asks a lot of questions because she can’t hear or follow the conversation. That did not happen at all. It may have helped that we sat in a relatively quiet section of the restaurant. I believe our conversation was very relaxed, not rapid paced as it is sometimes at our music nights at Casa Bella. She was obviously very comfortable and poised.

Another couple we know stopped by our table on their way out. We hadn’t seen them in quite a while. I am sure Kate didn’t know who they were, but I am equally sure she recognized the woman. She was just as natural and poised with them as with the Greeleys. Once again, she wasn’t put on the spot to test her memory. It was just a brief encounter with expressions of pleasantries that didn’t call for anything but a facility for light conversation. That is something Kate has always had.

We came back home where she rested on the sofa. She always likes looking at the trees and greenery in our back yard and the neighbor’s. She was unusually taken by them yesterday. As I do when she is enjoying music, I take great pleasure knowing that she finds such satisfaction in the beauty of nature. How grateful I am that she is able to enjoy life so much while living with Alzheimer’s.

After resting, she got up and said she was going outside to water her plants. I was stunned. I think it’s been two years since she expressed any interest in her plants. Prior to that it had been a passion of hers. She stopped during the winter two years ago and has never shown any interest until yesterday. Late this past spring or early summer, I had someone replant several pots on our patio. I thought that might rekindle her interest, but she has never shown the slightest sign that she cared about them.

As she prepared to go outside, I noticed that she had put on a pair of brand new shoes that I had received in the mail that very day. I suggested that we might find an older pair, and she gladly consented to change. Then she said, “Where shall we start?” That was the first hint I had that I might be a participant. I didn’t ask any questions. I said, “Why don’t we start out front. There are some things on the front porch that need water.”

When we got outside, I turned on the water. She did the watering. A lot of her watering was the bare dirt where I had some dead shrubs removed this past summer. The other focus was the grass and a few shrubs that were beginning to blossom. We had both gone out without jackets. It wasn’t long before she felt it was too cold to stay outside. I was glad because I had made dinner reservations and knew that it was about time for us to leave. The real accomplishment was not getting the plants watered. It was seeing her enjoying herself outside once again. As the weather improves, I wonder if she will want to do more of this. I hope so.

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From Fear to Joy in 60 Minutes

At 9:45 this morning, I saw on the video cam that Kate was awake and went to the bedroom. When I got to her, I discovered that she was scared. It turned out that she had been awake for a while and wondered where I was. She never called for me, or I would have gone to her right away. I also did not detect any movement that would suggest she was at all worried. When I apologized, she said, “Don’t ever do that again.” I told her I wanted her to know that I would never leave her alone and that I wanted her to call me if it happened again. She said, “I didn’t know where you were or where I was or what was happening.” Her memory of this fearful experience lasted a much longer time that I would have imagined. After she was dressed and taking her meds before leaving the house, she mentioned this again. This would have been about thirty minutes later. She said very sweetly, “I know you didn’t mean it, but don’t ever do that again – whatever your name is.”

Before leaving she saw a piece of ceramic tile that one of our grandsons had painted as a marker for our dog Chico’s ashes. We used to keep in a flower bed in our back yard where we had scattered his ashes. She didn’t know what it was, but she thought it was pretty and asked me if she could take it with her in the car. Of course, I said she could. We had enough time to stop by Panera for a muffin before an 11:20 appointment with her ophthalmologist . She asked if it would be all right to take it in the restaurant. I told her that would be fine. We put it on our table.

At Panera we had one of those nice conversations that occur periodically. She was in a very good humor and talkative. We talked about our lives and how fortunate we have been. She again showed how perceptive she can be when she said, “If you are with someone you like, it doesn’t matter where you are.” I agreed. After all, this was one of those moments that are special. We were just at Panera having a blueberry muffin, but it is the kind of moment I will treasure in the days ahead. How grateful I am that this is possible so late in her journey.

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Success With the New Sitter

Last week I was very disappointed to learn that we were losing our Monday sitter. She had been my favorite. A couple of weeks ago, we had a new sitter, Cindy, when I had a luncheon to attend. She had an easy job since Kate was still in bed when I got home. She had been asleep the entire time I was gone. I did introduce her to Cindy before I left, but they had no chance to get acquainted.

Cindy got the assignment to sit with Kate yesterday while I went to Rotary and a United Way meeting. I was comfortable having her but was a little uneasy as I wondered how Kate might respond to someone she didn’t know. I decided it would be best to wake her early enough to get her dressed and ready for lunch. Then the two of them could go to lunch at Panera. That would give them a little time to get acquainted.

I didn’t say anything to Kate about my leaving or Cindy’s coming. I waited until she arrived. I met her at the door and walked her to the kitchen where Kate was taking her morning meds. I introduced Cindy to Kate and told Kate that Cindy had come by to see her a couple of weeks ago, but she was asleep. I went on to say that she was back and that they could go to lunch together. Kate received her just the way I would have wanted. She was happy that they could go to lunch.

Then I told her I was going. She said, “Why don’t you eat lunch with us?” I told her it was my day for Rotary. She gave me a slight frown and then turned to Cindy and said something like, “Well, we’ll just have good time ourselves.”

Before leaving, I set up the TV to watch YouTube videos of the Tabernacle Choir. When I returned home, they were watching intently. This is one of the few times that I have used the video cam to check on things while I was away. I checked between Rotary and my United Way meeting. They had apparently just gotten back from Panera and were starting the video. I checked again after my UW meeting. They were still watching.

When I got home they were both sitting in front of the TV. They had been well-entertained by the music, and I was feeling great that it had been a successful first visit with this sitter. Today I will confirm with the agency that she is to be our regular Monday sitter.

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A Special Moment Last Night

Before going to bed last night, I put on several YouTube videos. One of them was Andrea Bocelli singing “The Lord’s Prayer.” Kate was immediately engaged and put down her iPad to listen. The next one that came up was Alfie Boe singing “Bring Him Home.” The YouTube algorhythm must have selected it because it is a prayer from Les Misérables. I was seated in the chair by my side of the bed while she sat in a chair on the other side. I looked over at her and saw that she had closed her eyes and put her hands together in front of her in a praying position. She was fairly still, but I could see some physical responses in rhythm with the music. She was hanging on every word he was singing. She loves the highest note on the final word when he ends with the plea “Bring Him Home” (as does everybody else).  Before he got the word out, she was already mouthing it silently. She, too, was praying. I was touched. Music is bringing her so many special moments.

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The Day Kate Was Diagnosed With Alzheimer’s

Today is a day that is hard for me to forget. It was eight years ago that Kate was diagnosed with Alzheimer’s. I just finished a quick look at the posts I made during the first ten days after that. (http://livingwithalzheimers.com/the-diagnosis-and-following-ten-days/) At that time we were experiencing all the emotions that surround such news. Kate was initially relieved but very quickly became scared and also angry.  Fortunately, neither of the latter two emotions was long-lasting. Although we were not surprised with the doctor’s news, the reality shook us. We had to sort through those emotions and figure out how to move forward.

At that time the future seemed very blurry. We were simply trying to grasp the diagnosis. We experienced a lot of feelings. We talked about the diagnosis and our future and tried to understand its implications. We couldn’t escape thinking about all the negatives that go along with the disease.

One of the things that struck me was how quickly we went into planning mode. We have been there ever since. That’s not because our plans were wrong. It’s because the situation is always changing and requires answers to new questions or problems. Our initial plans focused on two general areas. First, we needed to address legal and financial issues. That meant meeting with our attorney, accountant, and insurance man. Second, we wanted a plan for our lives in order to take advantage of whatever quality time we had. Somewhere along the way we will probably discover things we overlooked, but that foundation has served us well so far. I thought we would have far less time for living than we have. I never expected that we would be getting along so well after eight years. That is largely because I didn’t understand how much pleasure we could have after Kate’s memory was almost gone.

As we thought about the things we wanted to do, we gravitated to the things we already enjoyed. That included music, theater, travel, and time with family and friends. Each of these has played a significant role in our “therapy.” What is even better is that we are still able to enjoy most of the things that have led to a very happy marriage.

Looking back, I am glad that we responded actively and not passively. At this moment in 2019, I realize how much life we can enjoy while “Living with Alzheimer’s.” I still don’t know how long our good times will last. I know that the time is diminishing rapidly now. We stopped all major travel in January 2016. We made what may have been our last trips to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas. Movies are almost a thing of the past. I sense that non-musical theater and opera are on the way out. Music and social occasions like dining out play an even larger role in our lives now, but Kate’s sleeping late has cut down on our morning social engagement at Panera and our afternoons at Barnes & Noble. I plan to continue our day trips to visit friends as long as we are able. I don’t see anything that would stop that right now.

I can’t help feeling sad as I watch Kate change and imagine what lies ahead. I also recognize that our own experience with Alzheimer’s has been far better than that of most others. The past eight years are among the best of our marriage. I am grateful for that. I also feel a strong sense of determination to see that we make the best of the future no matter what it may bring.

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A Day of Contrasts

At 9:25 yesterday, I walked down the hallway to get Kate’s clothes when I heard her say, “Hey.” Before I could respond, she said it again. I hear this a lot now. It can mean different things. Often it means she wants something. Sometimes she is just trying to find out where I am. Yesterday morning, she was just letting me know she was awake and, perhaps, that she needed clothes. When I got to the bedroom, I found that she was still in bed, awake but not ready to get up.

It was a morning when she wasn’t in a particularly good mood. She acted as though I had said something that annoyed her. A little later, I asked her if I had said something that bothered her. She said, “No, but you probably will.”

Nothing that Kate said or did indicated that she was happy to see me. I chose to ignore this and simply help her get ready for the day. From past experience, I have learned that she won’t maintain that mood for long. I don’t know what precipitates these moods. I believe that her feelings may be a result of my control over so much of her life. I know that she doesn’t always like that. I also know that I often have to work to get her up or to get ready to go places. It could be that when she sees me come to her bedside in the morning, she naturally thinks that means trouble.

It turned out that I made the right choice to avoid a discussion with her and to help her getting up. I helped her dress, got her medicine for her, got her cup and iPad to take to Panera, got her jacket, and helped her into the car. The results weren’t immediate but did occur rather quickly. My own analysis of the situation is that focusing on the every-morning tasks provides Kate with an opportunity to experience some of the things I can help with and for which she recognizes she needs help. When that happens, she is more appreciative. In the meantime, she forgets that she was irritated, and life goes back to normal.

Because she was up early and did not shower, we got to Panera in time for her to have a muffin and enjoy time to work on her iPad before going to lunch. By the time we got there (a 4-minute drive from our house), her mood was vastly different. She was back to normal. As we started to walk across the parking lot to the door of the restaurant, she automatically reached for and grasped my hand. At that point, I felt sorry for her. Not too long before that, she had expressed irritation with me. Now she needed me for security.

We faced a more dramatic expression of her dependence on me when I was about to leave for the Y after the sitter arrived yesterday. When we got home from lunch, she said she wanted to relax in the family room. She picked up a 3-ring binder of family information and photos I had made for her several months ago. It has the names of parents and grandparents as well as information about us, our marriage, and our children. She hadn’t taken much interest in it until yesterday. I am sure she didn’t even recognize what it was when she picked it up and sat down on the sofa. Even though I used a very large font, it is hard for her to read. As she looked down one of the pages, she said, “Hey, here’s your name.” I walked over so that she could show me. I stood beside her as she looked at the information on that page, and I read it for her. She was quite interested.

About that time, Mary arrived. After greeting her, Kate asked her to sit on the sofa with her to look along with her. Then I told them I would be leaving for the Y. When I said that, Kate got a very sad look on her face and said, “You’re leaving? Can’t you stay with us?” It was a radical contrast with her enthusiasm for the information she was looking at. I suggested that Mary could read it to her. She said, “But this is something you would enjoy too.” It may be my imagination, but I think she looked even sadder when she said, “Why can’t you stay? I want you to.”

As with so many things that happen, I had to make a snap decision. I knew it wouldn’t be long before we could read the entire book. I stayed, and I am glad I did. Kate and Mary sat side by side on the sofa while I stood behind them looking at the book over their shoulders. I had written the book in a bullet-point style to make it easier for Kate to read. Because I was with them as they went through it, I could elaborate on much of the information. Kate loved it. It was just like the pleasure of a young child as her parent reads a favorite children’s book to her.

When we finished, I could tell it was a moment when I could make an easy exit. When I said I was going to the Y, Kate didn’t make any effort to stop me. She was happy, and I was on my way.

One other thing happened after dinner that I thought was both interesting and informative. We had walked to the car after leaving the restaurant. I have been helping Kate with her seat belt recently because she has had more trouble getting buckled up. When I started to help her last night, she stopped me and said, “I can do that.” That led to a very brief conversation. I said, “I’m sorry. I know that I sometimes try to do too much for you.” She said, “Yes, you do, but I know you’re just trying to help.” I said, “I will try to do better.” Then she said something that surprised me. “No, don’t change. It’s better if you do too much than if you do too little.” What surprised me was that her instruction to me involved a higher level of rational thinking than I believed possible at this point. This was not simply an expression of a feeling of need arising from her intuitive ability. It did involve that, but she had to put that together with another thought, that if I did less, she might need help when I didn’t provide it. This may be a little thing, but I was glad to see that she put these together and expressed it so clearly. As she sometimes says (though not in a long time), “Don’t count me out yet.”