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Visiting the Zoo

I have been increasingly concerned about Kate’s mobility in recent weeks. She has been unusually slow getting into and out of chairs and the car. She is also slower going up and down curbs and stairs. Thinking it might be her arthritis flaring up again, I’ve asked her if she is experiencing pain. Each time she tells me that she feels no pain at all, that she is just being careful. I can’t help thinking this is a result of her limited physical activity. When she used to work in the yard, she moved around from place to place. It wasn’t like walking for exercise, but it was much better than remaining in a sitting or lying position all day.

Lately, I have thought about getting her to the zoo or to a couple of the museums in town. Yesterday was the perfect day to try out the idea. The temperature was in the lower-70s without a cloud in the sky. After returning home from lunch, I told Kate it was such a beautiful day that I thought we should get out. She agreed.

She didn’t ask where we were going. She just got in the car as though we were going to Panera or Barnes & Noble. When we drove into the parking lot at the zoo, she said, “Where are we?” I told her we were at the zoo. A number of times I have mentioned the possibility of going to the zoo, and she wasn’t interested. That is why I didn’t tell her where we were going until we got there. Even then, I told her that I needed to renew our membership. That was true. Then I said, “We might as well take a look around.” She followed me in without raising any protest at all.

We hadn’t walked far when she said, “I don’t want to walk much.” I told her we wouldn’t stay long. I went prepared to leave after a short time if that were necessary, but it wasn’t. We had gotten there about 3:30, and they closed at 5:00. That worked out well. She loved everything. You would naturally expect her to be taken by the animals, and she was. Given her experience with gardening and the fact that the zoo has invested heavily in landscaping, it was no surprise that she really loved the trees, shrubs, and other greenery.

One of the highlights, as it has been on previous visits, was the Lorikeet exhibit. As you enter the area with its net covering the entire space, you are given a small cup of nectar to feed the birds. Since it was late in the day, they weren’t as hungry as they usually are. Only two birds came to drink from my cup and one to Kate. Another bird accidentally got into the back of the top Kate was wearing. I didn’t see it happen. I only heard Kate shriek. The bird got out quickly, and everything was fine. We had a great time. Kate was like a little child. We’ll definitely go back while the weather is still good.

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Hyper in the Morning. Mellow in the Afternoon.

Kate’s behavior was been a bit unusual yesterday morning. It started when she got up on the early side again. We even got to Panera in time to see some of our regular friends there. It had been almost two weeks since we had seen them. She was wide awake and seemed almost hyper. She was quite talkative, mostly kidding me about the usual things, my name, my nose, and my graying hair.

It started as we stepped from our laundry room into the garage. I handed her a sweater. As she was about to put it on, I said, “You could put it on before you get in the car.” She said, “Men.” She followed that with something like, “You say the dumbest things.” Once we were in the car, she asked my name. When I told her, she just laughed.

When we walked into Panera, we saw the group from the Catholic Church sitting across from the table where we usually sit. Normally, Kate would walk directly to the drink machine while I greet our friends. This time she said “Good Morning, Everyone” in a loud voice. Then she started talking about me. She was telling them that I am a big talker. They seemed surprised at the bold way in which she spoke since she is normally rather quiet.

Her talkative mood continued during lunch. Soon after we sat down at our table, she looked at me and said, “It’s a good thing you have a good personality.” I interpreted this to mean that I don’t look so good. As she frequently does, she commented on my nose and gray hair. We left the restaurant a little over an hour later. As we walked to the door, something unusual happened. Her mood changed dramatically. She gave me a serious look and said, “Are you going to divorce me?” I told her I love her and would never divorce her. In the car she said, “I want to thank you for your patience. You are very patient with me.” I am sure she had reflected on what she had been saying and was concerned about my feelings. It’s another good illustration of how well her senses are still working. The balance of the day she was in good spirits.

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Examples of Confusion/Memory Problems

On the way home from dinner last night, Kate said, “It’s been a nice trip.” I said, “Yes, it really has.” She said nothing else the rest of the evening that she suggested she thought we were on a trip.

About 9:00 last night, I brought Kate her night gown and told her it was getting close to bedtime. I was about to put it on the bed where I usually put it, but she wanted me to put in on the ottoman near the chair where she was sitting. Fifteen minutes later, she got up and went to the bathroom to put it on. She came out in a few minutes with the gown in her hand and asked if she was to put it on. I told her she was. By the time she walked across the room to her chair, she had asked me three additional times if she should put it on.

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Our Visit With the Robinsons

As I had expected, our visit with the Robinsons went very well. I received a call from them saying they were almost to our house as we were preparing to leave Panera. They arrived a few minutes before we did. It was just like old times. We came inside and chatted about fifteen minutes before leaving for lunch at Carla’s. We had a good lunch as well as conversation despite their having a very popular brunch that brought out a bigger crowd than we are used to on weekdays.

Kate handled herself well, but I suspect Angie and Tom noticed more changes in her behavior this time. Several times she asked who we were talking about because she had forgotten from moments before. She also asked to us to repeat ourselves a number of times as well. This could have related to the noise in the restaurant, but I know it is very common for her to forget who or what I am talking about within seconds. At times she was also asking because the conversation moved too quickly for her to follow.

I’ll have to hear from Tom about this, but they may have noticed more of her comments to or about me that are characteristic of her light-heartedness these days. At one point, she said something like “Men are like that.” I looked at Tom and said, “Remember that.” I will explain in an email to him later today. In recent weeks, Kate has made quite a few comments about men and women. They all tend to be statements about men’s views of women and the role women play in the world. I don’t ever recall her saying things like this at any other time during our marriage. Neither one of us has made sweeping generalizations about the other’s gender. It just hasn’t been part of our normal conversation. I’m not sure what has prompted this.

After lunch, we came back to the house. After a while, Kate’s eyes were closed as if she were napping. I see this as a normal response to the difficulty she has following conversations. It becomes too much for her, and she bows out for a while. I am glad she feels comfortable doing this.

After the Robinsons left, we went to Barnes & Noble. We were there two hours before leaving for dinner. Kate worked on her iPad without a break. She would have continued if I had not made early dinner reservations at Emilia. It’s a nicer place than most of the places where we eat on a daily basis. We enjoyed excellent meals in a quiet setting and then returned to the house.

At home, I watched part of the UT football game while Kate worked on her iPad. She was so engaged with her puzzles that she didn’t want to get ready for bed. She must have been well-rested from the previous two nights. I encouraged her to get in bed, but she said, “Let me finish this one.” She frequently says this, but she can never remember that she has said that, so I always have to stop her at some point. Last night, I decided she might come to bed if I got in bed first. That worked. We got to sleep quickly.

I was up at 5:30 this morning. Kate was up at 9:00 and has just finished her shower. This makes several days in a row that I haven’t had to be concerned about her sleeping too late. Funny how that happened just as I was ready to give in to her sleeping late. Now I wonder what will happen this week. One thing I know; it’s good to be flexible.

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Another Nice Day. Confusion is a Constant

We didn’t do anything special, but yesterday was another nice day. Kate was cheerful all day. She got up rather easily around 10:00. I had turned on some music about 30 minutes earlier. I think she was awake most of the time between then and when I got her up. We got her muffin at Panera and then went to lunch at Applebee’s.

She was especially interested in my name, her name, and the names of her parents at both places. This was another of those times she was also confused about who I am and not just my name. This came up when she asked her name. When I told her, she said, “Where did Creighton come from?” I told her that was my last name and that she had taken it when we married. As on other occasions, she was surprised that we are married. This time she said, “Well, I guess it could be worse?”

Things went very well with the sitter. Mary was waiting for us when we returned from lunch. Kate asked who that was. I told her it was Mary who stays with her when I go to the Y on Wednesdays and Fridays. She didn’t express any displeasure at that. She greeted Mary warmly when we got out of the car. I set up YouTube videos of the Tabernacle Choir for them to watch. Kate was especially eager to watch them. When I got home four hours later, they were still watching. I was surprised. It is a very rare event if Kate remains in one place for four hours. I suspect she didn’t even go to the bathroom. Right after Mary left, Kate said, “I want to go to the bathroom. Where is it?” I haven’t mentioned this before, but on a number of other occasions she has asked the location of the bathroom. Once she called me as she was walking to the bathroom to ask if the toilet was working. That may have been prompted by a plumbers visit three weeks ago.

She got up on her own today. That enabled us to get to Panera at 10:45 for her muffin. I was glad we got off to a good start since Tom and Angie Robinson are coming in for a visit today. They should be here by 11:30. We’ll meet at our house and then go out to eat. We have been visiting back and forth for almost 50 years. We have experienced a lot of changes over the years. I remember when we used to pack up all the children’s paraphernalia and stay overnight. We simplified that later on. Now we just make day trips. We eat out, enjoy one another’s company, and return home. As always, I will be interested in how Kate handles herself. She has changed a lot since they were first aware of her Alzheimer’s, but she still seems to mange well in social situations. There will come a time when she doesn’t. I don’t expect that to happen today.

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A Nice Day, But More Confusion

Right after we sat down for lunch yesterday, Kate said, “Who are you?” I told her, and she asked, “What’s my name?” Then she asked, “Are we related?” I said, “Yes, we’re married.” She looked at me in disbelief and said, “Married?” This led into questions about children. When I mentioned our having a daughter, she was equally shocked. She looked so puzzled that I was afraid to say too much. I thought that might be more disturbing than helpful. Most of the time we have this kind of conversation she simply accepts what I say. This was one of several times she seemed disturbed about not remembering.

We returned to the house after lunch. We had about an hour before her appointment for a massage. I thought she might work on her iPad during that time, but she was tired. She sat down in a chair with her iPad but immediately closed her eyes and went to sleep. That is something else that is not typical. She often rests but rarely goes to sleep, especially sitting in a chair. She usually moves to our sofa or to our bed.

We came back to the house after her massage. As we turned on to the road leading to our neighborhood, she said, “I used to live around here.” When we approached our house, she pointed to it. I said, “Does that look familiar?” She said, “Our house.” She said this in a way that made me think she knew it is where we live now. I pulled into the garage, and she saw her collection of Dr. Pepper signs and knick knacks. She said, “Oh, I remember these. I think I used to live here.” Once we were inside, she commented on the family room and said something about having lived here in the past. I told her it was where we live right now. She expressed some surprise but not the kind of disbelief she had shown in our lunch conversation.

I gave the iPad to her, and she took a seat in the family room. Instead of working on her iPad, she picked up her Big Sister photo book. She spent about ten minutes looking at it when she received a phone call from Meg Wright, a longtime friend from Dallas. She was a bridesmaid in our wedding. I had shown Kate the picture just before she called. That turned out to be a good opening for their conversation. She handled herself beautifully. She was very natural. If I hadn’t known better, I would have thought she was perfectly normal.

When she ended her phone call, she picked up the photo book again and spent another twenty minutes going through it. I have heard other people talk about the value of a memory book, but I am getting a better appreciation now. Going through multiple photographs of various family members jars her memory in a way that is much more powerful than my telling her about her father, mother and other members of her family. Once again, it reinforces the impact that her intuitive qualities have. I saw no sign of puzzlement as she leafed through the pages. She continues to identify specific pictures that she especially likes. They aren’t random choices. She keeps noting the same ones. She really connects with them.

We topped off the day with dinner at Casa Bella. This is the second week they are featuring music from Les Miserables. Since we had attended a performance last week, we ate in a separate dining room than where the music performed. We had a good meal, but I did find it sad that she is completely forgetting all of our memories of the years we have eaten there. She asked me the name of the restaurant, but the look on her face told me there was no recognition. During the meal, however, she did say, “I remember being here before.” When she asked about dessert, I told her we were going to have the Amaretto cheesecake. We’ve eaten this dessert 90% of the times we eaten there. She didn’t recall it, but she did love it.

When we got home, she picked up her iPad and took a seat in the family room. She continued working on it for over an hour before I told her it was time to get ready for bed. Earlier she had said she was very tired and wanted to get to bed early; however, she was so engaged with her puzzles that there is no telling how long she would have continued.

I got her a night gown and told her it was time to put it on. She took it and went to the bathroom next to our bedroom. I was working on this blog post when I realized it had been a while since she had left the room. I called to her. She responded but I didn’t see her. The lights were on in the bathroom and the room where she keeps her clothes. It was dark in the guest room. That’s where I found her. She was in bed under the covers wearing her clothes including her shoes and socks . Her gown was beside her on the bed. I told her I would like to have her join me in our bedroom. She got up, and we walked through the guest bath to the hallway to our room. She said, “I’ll follow you.” At that point, we were about 10-12 feet from the doorway to our bedroom. Even that close, she was unable to recognize where she was.

Once in the bedroom, I told her step by step what to do. She did, however, put on her gown without my help. She is sometimes unable to do that. That reminds me that this morning was the first time she has asked me to fasten her bra. I have been amazed that she has been able to do that until now. After putting on her gown, she went right to bed. She was worn out. I joined her in another fifteen minutes. She was asleep then. I hope that will make it easier for her to get up this morning.

As I say so often, it was a nice day; however, her confusion seems to get worse almost every day. She is fading away faster and faster, something I wish I could stop. I’m quite familiar with the last stage of this journey, but I don’t think there is a way to adequately prepare for it.

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Adapting to Changes in our Morning Routine: Part 2

Those who know me well understand that I don’t like change. I do, however, grasp that change occurs whether we like it or not, and the question is how to successfully adapt to it. Living with Alzheimer’s demands a lot of change. When I first noticed that Kate was sleeping late in the morning, I tried to determine why. What I really wanted was to be able to control it so that it didn’t impact our whole morning. I didn’t want a whole morning to myself.

That led me to do several things. The first was to consult her doctor. He suggested eliminating Trazadone from her daily meds. That resulted in her sleeping less time in a 24-hour period; however, it meant she went to bed a little later. Her pattern that had been so regular for years was disrupted.

Along with that has been a change in my whole morning routine. I was most concerned about her getting up early enough on the days we have a sitter. I wanted time for us to have lunch together before the sitter arrived. The other concern involved what time we eat lunch on the days we don’t have a sitter. We have eaten as late at 2:30 a number of times. Since I eat an early breakfast, I am ready to eat as early as 11:30 though eating between 11:30 and 12:30 works fine.

These two concerns led me to focus on getting her up earlier, not to get to Panera at the time we had been going but to be ready for lunch around noon. That meant that I let her sleep until 10:00 or 11:00 before attempting to wake her. Most of the time that gave her enough time to prevent her feeling rushed. Over the past week, it has been more difficult for her to get up.

Yesterday I tried something different. It was a day for the sitter to come at 1:00. At 10:15, I put on some music to gently wake her. About 15 minutes later, I checked on her. She was still in bed but awake. I asked if she would like me to take her to lunch. She said she would. I told her I had put her clothes out and the bathroom was already for her to shower. Then I left to give her a little time. When I returned thirty minutes later, she was sleeping soundly. I decided not to push her and try a little later even if it meant that the sitter took her to lunch. At noon, I checked again. She was awake but still in bed. I told her that this was a day for me to go to the Y and that Mary would be coming to stay with her. I asked if she would like to go to lunch. Again, she said yes.

After she was up and still having trouble getting going, I decided that I could ask Mary to meet us at Panera. I’ve done that a number of times before. As it turned out, we got to Panera only a few minutes before Mary, so I ate lunch with the two of them. When I finished, I left for the Y. I found that worked well and am prepared to do that on a regular basis if needed. It takes a load off me. I don’t have to be as concerned about waking her. It also allows Kate to do what she wants – sleep and take her time getting ready.

When I got home, Kate was resting on the sofa. Mary said they had stayed at Panera for a while before Kate wanted to come home. I gathered Kate had been resting a good bit of the time I was gone. That is another of my concerns. She seems to be using the time with the sitter to sleep. It’s hard for the sitter to control that, and that might easily explain something else that is happening.

Every change brings about responses that lead to other changes. My concern now is letting her sleep so much during the day that she can’t sleep at night. Until the last few days, that has not been an issue. During the past three nights, however, she has gone to bed early but was still awake an hour or two later. I want to avoid that’s becoming a pattern.

So, where does that leave me? The ideal resolution of the problem for me would be to wake her up at an earlier time. That should help her get to sleep more easily. I think I will try that for a few days and see how she responds. It seems worth a try. I may also be able to take advantage of those few times she gets up on her own. She did that a few minutes ago. She’s in the shower, and its only 10:10. That’s not a bad start.

Looking ahead, I believe that I will engage a sitter for at least a couple of mornings a week. I am not ready to do that just yet. Kate is just beginning to require help getting dressed, and I am not sure she would like someone new helping her. One thing is for sure. The changes are not going to stop. I will need to adapt.

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Sleep Again

After getting up very early (just before 7:45) two days ago, Kate slept late yesterday. I checked on her at 10:30. She was coming out of the bathroom. I thought she was going to get ready for the day, but she went back to bed. I checked on her again at 11:30. She was still in bed but resting. I asked her if she would like me to take her to lunch. She nodded and said, “I’ll need some clothes.” I told her I had put them on her chair. She was still groggy, but she got up. She skipped her shower, so we were able to get to lunch a little after 12:30.

We both had appointments for haircuts at 3:00. When we returned home, she picked up one of her family photo albums and looked through it for about thirty minutes. Then she lay down on the sofa and rested for almost an hour. I’m not sure, but I think she was actually asleep part of that time. She was tired after dinner but stayed up until about 8:30 when she called it quits for the day.

I continue to believe the change in her sleep pattern is a general sign of the other changes that she is experiencing. Over what is now seven years and nine months since her diagnosis, the changes have been very gradual. The past six months have been quite different. The fact that she asks so many questions about the names of our family members and where we are suggests that she is working hard to preserve whatever memory remains. It is hard. It is common for her to ask my name several times in succession and still not be able to repeat it. Over a day’s time, it must be very taxing for her.

I’m not making any predictions about the future, but I feel confident that we will make our trip to Texas for Thanksgiving with our son and his family. As for everything else, I intend for us to follow the same approach we’ve had from the beginning. We’ll take it a day at a time and enjoy every moment we can.

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Kate’s Humor

Although Kate appreciates humor, she has never been one to joke or kid with people. It has only been in the latter stages of her Alzheimer’s that she has taken an interest in kidding me. I often think of kidding as an “art.” Not literally, of course. What I mean is that it requires the kidder to have a sense of when and when not to kid, who and who not to kid, and the way to kid. That is something Kate hasn’t mastered. What has happened is that she has lost her ability to filter what she says. Fortunately, I am the only one she kids, and I understand that she never means to hurt me. She is trying to be playful in the same way that I have been with her.

That does lead to her kidding me in a way that an observer would interpret as sometimes “mean-spirited.” That is especially true in her comments about our last name as well as my looks. One example that comes up frequently is when she asks my name. If I only give her my first name, she asks for my full name. When I tell her, she gives me a painful look when I say Creighton. She has a strong preference for her maiden name, Franklin, and says something like, “What was I thinking about?” Sometimes she says, “Richard Lee sounds all right, but Creighton?”

It is much more common for her to say something about my looks. Yesterday at lunch, she said, “You know, you’re a nice guy. You’re not handsome, but you’re nice.” She got more specific and mentioned my nose and receding hairline. About that time, a man in a hat walked by our table. I told Kate that maybe I should wear a hat. She said, “That won’t help. If it weren’t for your personality, you would still be living off your parents.” Should I have counted that as a victory?

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Confusion, Gratitude, Dependence

After returning home to relieve the sitter yesterday, Kate and I went to Panera for about an hour before going to dinner. While we were there, we had another of those touching experiences that occur so spontaneously from time to time. And it seems like they occur in such unglamorous places. It began with her saying, “You’re a nice guy.” She made several other complimentary remarks and then asked my name. I said, “I love you.” Her response surprised me. She said, “You do?” I said, “Very much.” Then her eyes filled with tears. She wanted to say more but couldn’t. She just reached both hands across the table, and we held hands for a few moments without saying a word. I wondered why she was so touched. She’s heard me say that countless times before without a tear. I don’t want to overreach in my interpretation, but I believe it is another sign of her recognition that she is losing her ability to do so many things.

I said something about our having been married for 55 years. That brought on another surprise. She couldn’t believe we are married. Very much like she did the last time this happened, she asked if we were really married or just living like a married couple. I assured her we are married. She accepted it but couldn’t understand not being able to remember. Her puzzlement caused me to rethink my efforts to help her retain whatever little memory remains. When I told her we have been married 55 years, I was trying to be helpful in keeping that memory alive. It wasn’t reassuring to Kate. She said, “Are you sure? I should remember that.” Her comment and the look on her face told me it could also be a harsh reminder of how bad her memory is. I don’t intend to make any abrupt changes in what I tell her, but I am going to be more careful of the things I say and when I say them. I will certainly answer her questions directly, but I want to avoid bombarding her with information that might exacerbate her anxiety.

During the time we were at Panera and again at dinner, Kate was very tired. She had gotten up unusually early (before 7:45). That could easily account for her being tired; however, I don’t ever recall her looking or expressing being tired the way she did this time. I thought about how difficult it has been for her to get up the past few days. She has slept that late before, but she has always been able to get up more easily. Once again, I see this as part of a pattern of change is taking place.

At dinner, she said she was ready for bed. When we arrived at home, she said, “Just tell me what to do.” I brought her to our bedroom and suggested she brush her teeth and that I would get her night clothes. It didn’t take her long to get in her gown with my help, something she often delays until later in the evening. She got into bed with her iPad.

For a while, she worked quietly on her iPad while I watched the news. Then she started making periodic comments. At first, she talked about how much I do for her and how much she appreciated it. Before putting on her gown, she asked me if we would be staying here another night. I told her we were. Later when she was in bed, she said she had learned a lot during our marriage and began to talk as though we were in a foreign country. She talked about the advantages we have in the US compared to the people we were seeing. She said she was glad she was with me and proud of the way I was able to relate to the people. She made reference to a group of men that were “working with” me. I wondered if she thought we were part of a work crew cleaning up after a disaster. She said she was proud of the work I was doing and asked if her brother, Ken, knew what I was doing. I told her I hadn’t spoken with him. She asked that I send him an email tomorrow.

Around 7:30, she put down the iPad and said good night. I put on some music and told her I would stay there in the room with her. When I came to bed at 9:45, she was still awake. I suspect she had dosed on and off for two hours. When I got in bed, she was very talkative. At first, I didn’t understand what she was talking about. That’s because she began with an assumption that I already knew. One of the first things she said was, “Weddings can be a lot of work, but they can be worth it.” It took me a while to figure out that she thought we were at a wedding. Several times, it sounded like she might be talking about our own wedding, but I was never sure. She also talked about marriage, pointing out that a husbands and wives will find things on which they don’t agree, but they need to learn how to work them out. She repeated this theme several times. Except for the fact that she appeared to be imagining an experience that wasn’t/didn’t happen and that she was devoting so much attention to it, what she said were very rational, sensible observations about married life.