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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.”

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Back to Panera

Increasingly, I find that I am no good at predicting what each morning will be like. Thankfully, we haven’t had any bad mornings. I’m mostly thinking about what time we will start the day. Overall, Kate gets up later than she did a year ago; however, she periodically surprises me like she did this morning. She was up at 7:30 to go to the bathroom. That’s not unusual although she usually does that a little earlier. This morning’s surprise was that she got up again at 8:30 and was ready to start the day.

Like the two previous mornings, she seemed alert, not groggy the way she often is. I asked if she wanted to shower. She did. I was glad as she hadn’t showered in two days. I thought I would have to coax her, but we avoided that. I left her after she was in the shower and went back to the kitchen. My next surprise was that she didn’t take as long to shower as usual. She often showers for fifteen minutes or so.

I went back to show her the clothes I had put out for her. It seems that no matter where I put them she doesn’t see them and has to asked me for them. That was the case this morning. I was fully prepared for her to get back in bed, but she didn’t. She was ready to dress.

As I helped her dress, she said, “What’s your name?” That was the first sign of any memory loss or confusion. Otherwise, she seemed perfectly normal except for needing my help finding the bathroom and getting her clothes. It made me think again about how easy it is for someone with dementia to get by in brief social encounters without anyone’s suspecting the diagnosis. As usual, she asked my name in much the same way that she might have asked, “What’s on TV?” She is perfectly natural and doesn’t appear to be bothered in any way by not remembering.

After I told her my name, she tried to repeat it but couldn’t. She tried to say “Creighton.” I repeated it for her, and she tried again. She got it on the third or fourth try and repeated it several times in succession. Then I said, “Do you know who I am?” She hesitated and tried to think but didn’t say anything. I told her, and she smiled. I said, “Don’t you believe me?” She said, “I believe you.” She seemed comfortable with that, but didn’t express any special enthusiasm.

We got ready more quickly than usual and arrived at Panera by 9:30. We haven’t done that many times in the past 8-10 months. She is working happily on her puzzles as I write this post. That reminds me of another surprise. This involves her puzzles. Last night she asked me for help. When I looked at the puzzle, I noticed that she had completed all the edge pieces and was starting to place the others. That struck me because I have suggested for weeks that she start by finding the edge pieces and putting them in place. They are easier to identify. Once placed it is easier to place the others. That is especially true when you are working with 16-piece puzzles.

A little later, I was also surprised when she needed help finding the last remaining piece. This time it was because she couldn’t find the piece itself. She was able to see the “hole” in the center of the puzzle where the piece should go. I frequently show her the piece and the empty space, but she has never been able to see it. That has been a big “puzzle” for me. I can only chalk it up to her Alzheimer’s.  Both of these surprises tell that she is able to learn some things that I thought she couldn’t. Her rational ability has not totally vanished.

Unfortunately, it’s a quiet morning at Panera. We haven’t see anyone we know except the staff, but Kate enjoyed her muffin and is now enjoying her puzzles. It’s also a nice break from our regular routine. It looks like another good day.

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Back to Our Routine

We said goodbye to Kevin and his family night before last, and they left yesterday morning. We were back to a regular routine. That doesn’t mean that everything went the way I would have liked. Once again, Kate had a slow start. It was another morning when she didn’t recognize me as her husband. It seems this is becoming a pattern. When this happens, I don’t try to convince her, I redirect the conversation to something else. This morning I did something I don’t usually do. I said, “Could I ask you a question?” She said, “Yes.” I said, “If you don’t think I am your husband, who do you think I am?” She said, “I don’t know.” I said, “Do you think of me as someone you can trust?” She looked at me, hesitated a moment, and then said, “Yes.” I told her I was glad to hear that and wanted her to count on me for anything she needs.

On the way to lunch, I mentioned that we had met at TCU and that was where we had our first date. That led to a few other recollections of our past together. By the time we got to the restaurant for lunch, she seemed to be herself. I don’t mean that she knew my name or hers, but she seemed comfortable with me and our surroundings including our server.

As soon as we returned home, she wanted to rest. It wasn’t long before our sitter arrived. I gave her an update on the past few days. Then she went back to the bedroom to say hello to Kate. I followed in a few minutes and told her I was going to the Y and would see her later. She was very comfortable with Mary and fine with my leaving. I left with a good feeling.

When I got home, they were watching the last part of Les Miserables. They were both enjoying it. Mary left, and Kate and I watched the last thirty minutes together. She was as engaged as she has ever been. I was happy to see that since the last time I had put it on, she wasn’t as excited. That was the only time she has failed to respond with enthusiasm.

After dinner, I watched the news and then switched to several music videos that I knew Kate would like. She worked on her iPad and didn’t want to stop when I said it was time for us to get ready for bed. She said she wanted to finish the puzzle she was working on before putting on her night gown. I know from experience she can’t remember to stop when she finishes a puzzle. It was thirty minutes later before I told her it was time to get to bed. She didn’t want to stop. I told her I wanted to get to bed myself, but I didn’t want to do that if she wasn’t in bed. She reluctantly agreed to stop.

Once she was ready, she asked if she could work on her puzzles in bed. I told her that would be fine. That turned out to be a mistake. As I tried to get to sleep, she kept talking to me. She would tell me how well she was doing and wanted to show me the completed puzzles. As usual, she also wanted my help completing several of them. Despite the cataract surgery, her Alzheimer’s still affects her vision. Off and on she thinks she has finished a puzzle when one or two pieces are not exactly in place. When that happens, the app won’t indicate that the puzzle is solved. That means she can’t start another one. This continued for about thirty minutes before she called it a night. This was a time that I suspected the amount of sleep she had the night before and her afternoon nap made it hard to go to sleep. I have expected this to happen before, but it hasn’t. I hope this doesn’t signal a new routine.

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Our Sunday

Yesterday morning Kate got up to use the bathroom about 7:00 and went back to bed. I was in the bathroom when she got up. She was quite cheerful and seemed more awake than usual, especially at that hour. When she hadn’t stirred by 11:30, I checked on her. She was lying in bed awake. We spoke to each other, but she didn’t seem as clear-headed as she was earlier. I asked if she were confused. She said she was. I said, “I think I could help you? Would you like me to start with who I am?” She said yes, and I said, I am Richard Creighton.” She said softly, “I know that.” I said, “Do you know I am your husband?” Again she answered, “Yes.” “Do you know you are Kate Creighton?” She also knew that. I decided to go in a different direction. I said, “I have an idea. I think if you get up and we go to lunch, you’ll find things will clear up. We’ll have a nice meal and a good dessert.” Then I suggested the first thing would be to take a shower and that would help to wake her up. That’s what she did. Although she wanted some guidance from me, she still expressed a little independence. She didn’t want me to help her out of bed or to the bathroom. She just wanted me to tell her where the bathroom was.

Following her shower, she got back in bed but she didn’t seem confused at all. By the time she had rested a little longer and gotten dressed, it was after 1:00. We got to Andriana’s shortly after 1:30. She was particularly concerned with Frank Sinatra’s name yesterday. We had been there only a few minutes when she pointed to his picture and asked him name. That was the first of many. One time when she asked his name, I said, “Frank Sinatra.” She replied, “Frank Sinatra. You’ll probably have to tell me again. What’s his name?” She wasn’t kidding.

We were back home a little after 3:30 and spent the balance of the afternoon relaxing by a fire in the family room. Not too long before dinner we had a nice phone call from our son, Kevin. Then we went to dinner and returned home where I watched the Patriots and Chiefs game. She worked on her iPad until just before 10:00. It was a nice day.

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Getting Back to Normal

As I expected, we had a rather quiet day yesterday. Kate slept until almost 11:00. She was in a good humor and smiled at me when I walked to her bedside. At first, I felt that she must have known me. I asked if she were hungry. She was and wanted her clothes. I pointed them out on the chair right next to the bed. She asked me to help her up. She sat up on the side of the bed. I got her clothes. As she started to dress, she looked up at me and said, “Who are you?” I told her my name. Somewhat hesitantly she said, “Are you my husband?” I told her I was.

When she was ready to go, we went to lunch. The only question I recall her asking was the name of the restaurant. I can’t be sure that she remembered my name and/or that I am her husband. She didn’t ask.

After lunch, we came back to the house where we relaxed almost an hour before going to get our hair cut. Apart from one small incident, she didn’t seem confused. That occurred after the stylist cut her hair, and I took my turn. I had given the iPad to her in the waiting area while I went to the back of the shop. In a few minutes, she came looking for me. She indicated that she didn’t know where she was to go. The stylist told her she could stay in a chair near me or that she could go back to the waiting area. I couldn’t hear exactly what was said, but Kate ended up staying in the waiting area where I had originally left her. I think that she had forgotten where I was and just needed to know.

The rest of the day was rather laid back. We came home and relaxed for a while before going to dinner. When we returned home, I watched the evening news while Kate worked on her iPad. Kate went to bed early but did not go to sleep. I was up later watching the first half of the Baylor/Vanderbilt game. When I got in bed, she was still awake. Much of the time she had been in bed running her fingers through her hair. She said that she was “making progress.” Otherwise, she seemed perfectly normal and didn’t get up at all during the night.

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Miscellaneous Happenings Yesterday

Yesterday Kate got up after 12:00. I wasn’t troubled by this since we were going to Flat Rock, North Carolina for a Christmas show that started at 8:00. That is the latest event we have attended in almost two years. I knew she would need as much rest as possible. She had no trouble getting up. She seemed to recognize me and was in a good humor but not ready to engage in conversation. After her shower, she thought I was trying to rush her as she was getting dressed. I was actually trying to avoid rushing her, but I moved too quickly explaining the order of the apparel I had put out for her. She snapped at me. Then she apologized. I said, “That sounds more like the gal I know.” She said, “I was taught to be polite.”

In the car on the way to lunch she worked harder than I ever recall to learn my name. She repeatedly ask me my name almost the entire time we were in the car. She never seemed frustrated, just intent on getting it right. She finally said, “That’s enough. I’m not going to remember it right now, but I will later.” We went through the same thing with her name without the same degree of repetition. Once inside the restaurant she said, “I think we are a perfect match.” I told her I agreed. She didn’t ask my name again.

On the way to Flat Rock, I had the radio on to the news. She was attentive to what was said but couldn’t understand it. She kept wanting me to explain what they were saying. A number of times she said, “You’ll have to explain this to me later.” She does this a lot when she is getting overwhelmed by information. In the early years after her diagnosis she used to say, “TMI.” Now she has forgotten that acronym.

Once we arrived in Flat Rock, we spent about an hour in our hotel room and then went to dinner with our friends. She handled herself well although it was hard for her to hear and/or understand the conversation. She had to ask us to repeat what we were saying several times. She gets confused about items on the table. For example, at two of the restaurants we frequent the butter is in black wrappers. She always thinks they are chocolates. I have to watch or she starts to eat them. She’s only been successful one time and didn’t waste time spitting it out. The other times I have caught her before she puts one in her mouth. I usually remember to unwrap a couple of them put any remaining ones near me to minimize the chance of her making a mistake.

We didn’t have that problem last night, but there was something else. Three of us had either soup or salad before the meal. At the same time, the server brought a basket of small rolls and placed them near the center of the table in front of Kate. Thinking they were hers, she put the basket at her place and ate all of them along with the butter.

Keeping up with things like coats, sweaters, and gloves can be a challenge. I try to watch for these things, but I am far from perfect. Last night she wore gloves to the restaurant. As we started to leave, she could only find one. A quick search produced the missing glove under the table.

When we walked into the lobby of the theater, our friends wanted to buy CDs while we went to our seats. When they met us, Kate greeted them cordially as though we had not been together just a few minutes before.

When we were ready to leave the show, she had lost another glove. We checked with the box office and found that it had been turned in. I should also mention that she has difficulty putting on her gloves. She gets them on the wrong hands so that they are upside down.

As we walked to the car, she asked me where we were going. I told her we were going to the hotel. She was very confused. She thought we were going home. I explained that we were staying at a hotel and would go home tomorrow. She said, “How was I to know?” This is a common experience and is my fault. I know that she can’t remember anything for longer than a few seconds, but she behaves so normally most of the time I tend to forget. In this case, we had spent an hour in our hotel room before dinner. I didn’t think about the fact that she would have forgotten that we were staying in a hotel. There are also times when I assume she won’t understand when she does. It is difficult to recognize those times when she will know something and those times she won’t. I suspect I am not the only caregiver who makes mistakes like this.

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Nothing Special, But a Nice Day

It’s a cool, rainy morning in Knoxville. Both the neighborhood and the house are very quiet except for some soft piano music playing in the background. I had planned for us to visit our friend Ellen in Nashville today. The weather report changed my mind. It is supposed to rain a good bit and might snow as well. Either way, I’d rather not be on the highway.

I trust that Kate and I will have another good day. We usually do. That was true yesterday. Kate was up surprisingly early (before 9:00). She had gotten up to go to the bathroom and went back to bed. I checked on her at 10:00. She wasn’t asleep but very relaxed and didn’t want to get up.

When I went back about about 10:20, she asked me what she should do. I suggested getting up and taking a shower. She said she didn’t want to take a shower. After she had been to the bathroom, she changed her mind. This was another day she wanted my help to the bathroom, toilet, and shower.

One thing was different yesterday. She knew me as her husband. She may have asked my name one or two times, but she knew we are married and mentioned things during the day that made that clear.

We were able to leave for lunch by 11:30. That made it easy to return home for the sitter at 1:00. Before she arrived, I pulled up a series of YouTube videos with Christmas music. The first one I previewed was Handel’s Messiah. I told her that was a special piece of music for us because we attended a performance of Messiah on our first date in 1961. I have mentioned this a number of times during this Christmas season, so I was surprised to see that she responded emotionally. Her eyes immediately filled with tears.

I left Kate and the sitter with the videos running. When I returned four hours later, they were still watching. Kate said, “You should have been here for the beautiful music.” Mary said that Kate had rested part of the time and may have actually fallen asleep for a little while. She couldn’t be sure.

We relaxed at home for another thirty minutes before going out for our Friday night pizza. We came back home where I watched the evening news while Kate worked on her iPad. Following the news, we watched a portion of Messiah broadcast by the BBC. It was a good way to end the day.

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The Rest of Our Day Yesterday

Since our sitter was unable to come yesterday, I decided to see just how long Kate would sleep if I didn’t wake her. When she was still sleeping soundly at 11:30, I decided to put on some music. About fifteen minutes later, I checked on her. She opened her eyes as I approached the bed. I won’t know how long she would have slept, but I decided it was better to get her up. Although she sometimes takes as long as two hours to get ready to leave the house after getting out of bed, she was ready in an hour and fifteen minutes. Except for needing help getting her pants on and misplacing the underwear and socks that I had put with her clothes, everything went smoothly.  (I haven’t gotten used to the rapid disappearance of things like her underwear and socks. I looked in the obvious places around the chair where I had put them without any luck. I keep a large supply of both items. It comes in handy at times like that.) I asked if she wanted my help getting dressed. She didn’t, so I felt sorry for her when she had to ask. She still wants to be independent. That is something I understand.

We went to lunch at Panera and stayed there for about two hours before going home. When we came inside, Kate went directly to the bathroom off the laundry room. I went to the back of the house. I walked back to the family room where I expected to see her. She wasn’t there. I looked in several rooms and still didn’t find her. I called to her. There was no answer. Then I went to the living room. She was lying down on the sofa. It was obvious that she wanted more sleep. I let her stay there until 4:30. Then I decided she would be awake all night if I didn’t get her up. It turned out that she was awake although she must have been dreaming something. When I walked in, she said, “That’s funny.” I asked what was funny. She thought a moment but couldn’t remember. I asked if she had been dreaming. She said, “Maybe so.” The she asked, “Where are we?”

We went back to Panera. As we got out of the car, she asked, “Where are we?” I told her we were in Knoxville. She said, “I know that.” Then I said, “Panera.” After we sat down, she said, “I think I remember this place.” A few minutes later, she said, “You’re a nice guy. I guess that’s why I married you?” I said, “And we’ve been married 55 years.” She looked skeptical and said, “You must have been gone a lot.” Then she said, “What’s your name?” She asked me to repeat it slowly. Not too long after that she said, “I think I’ve been here before.”

From Panera, we went to dinner. She told me she was sleepy and might go to bed soon after we to home. When we returned to the house, she said, “They take very good care of this place.” Once we were inside, she commented on how much she liked the family room. She does this almost every time come back home. It always sounds like it’s the first time she has seen it. Sometimes she doesn’t recognize it as our house. I’m not sure what she was thinking last night. She asked what she should do now. I suggested she might want to brush her teeth. She said, “Where’s the bathroom?” I said, “I’ll show you” and showed her the way.

She had asked if there were something on TV that we might watch. I decided to try the DVD of Les Miserables again. This was the first time I recall that it did not get her full attention. She worked on her iPad, but put it down periodically to focus on particular songs, but it was clear that it did not grab her the way it had in the past.

Our son called, and we had a nice conversation with him. I handed the phone to Kate to answer. In previous occasions when I have done this, she has declined and handed the phone back to me. This time she accepted it and took the lead in our conversation. She handled herself well except for getting confused about what Kevin was telling her about a recent business trip. After his call, she got ready for bed but was still awake an hour later when I got in bed.

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Early Start Today

Last night, Kate was tired and had trouble working on her iPad when we returned from dinner. I’m not sure her problem with her puzzles relates only to being tired. She seems to experience increasing difficulty remembering how to open her puzzle program or how to get a new puzzle once it is open. As I have mentioned before, she is also asking for my help when she has only one or two pieces left. It should be pretty easy to see where the pieces go with a 16-piece puzzle, but it is not easy for her. It is not unusual for her to ask me to finish the puzzle for her. She finally gave up trying and got in bed around 8:00. When I joined her closer to 10:00, she was awake. I got the impression she had been awake the whole time.

Around 5:30 this morning, she must have had a dream. She moved close to me and put her arm around me and held tightly. She did not appear to be awake. Neither she nor I said a word. I put my arm around her. She was very tense. As I held her, she relaxed. Since we didn’t speak, I don’t know if Kate remembered my name. The way she reached for me made it clear that she recognized me as someone she knows. I take it as another sign that she looks to me for security.

About 8:30, I checked on her. I expected her to be sleeping soundly. To my surprise, she was getting dressed. I helped her briefly, and she was ready to leave for Panera and her muffin shortly after 9:00. It’s a little like old times. As we walked in, we spoke with a couple we have seen most frequently on our visits. The man and I have connected, and each of us has missed seeing each other.  We arrived before a Bible study group from a nearby Baptist church. That gave us a moment to speak with one of their group whom we have known through musical circles in town. We also said hello to a young woman seated at the table next to ours. She is a medical student who often spends time at Panera studying. Kate went over to her, and they spoke for a few minutes. Since she didn’t get as much sleep as usual, I suspect Kate will be ready to go back home and rest a bit before we go to lunch, but we’re off to a good start.

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Sleep and Our Daily Lives

Kate’s sleeping later has certainly had an impact on our morning routine. Now it seems to be encroaching on our lunch. Yesterday and the day before, it was much harder to get her up than it has been in the past. We didn’t leave for lunch until 1:50 on Saturday. We were so late that I sent a text to our server at Bluefish letting her know that we wouldn’t be there. We went to Panera instead. Then we came back to the house for the balance of the afternoon. She worked on her iPad for a while. Then she took a nap, something I might have thought she didn’t need.

After dinner, I found a YouTube video of the 10th Anniversary concert of Les Miserables and played it. While this video was not nearly as good as the 25th the music was the same, and Kate enjoyed it just as much as the one we had watched before. At my suggestion, she went to bed a little earlier than she has been doing. I thought she needed the sleep.

The big surprise yesterday was that it was just as difficult to get her up as the day before. Both days I played music and kept going back to the room to wake her. She didn’t want to get up either day. She finally consented but didn’t want to get up. We saved time yesterday since she didn’t take a shower. Still, it was almost 1:00 before leaving for lunch and almost 2:30 when we headed back home. That shortens our day quite a bit.

Despite her sleeping late, she was in a cheerful mood both days. That doesn’t mean there was any improvement in memory or lessening in her confusion. When I went to check on her yesterday, I immediately noticed that she was still in her night gown. Then I saw that she was wearing her pants as well as her shoes and socks. I quickly realized this was a replay of something she did last week. She thought her gown was the top she was to wear for the day. When I gave her the top I had shown her earlier, she said, “Can’t I just wear this one (her gown)?” I told her that was her gown. She looked a little sheepish and said, “Oops, sorry.”

We went directly to lunch at Andriana’s. Our server was unusually eager to see us. I must have neglected to let her know that we were not going to be there last week. She was worried. Then when we were late yesterday, she became even more concerned. It was nice to know that we were missed. We had a good lunch topped off with an enormous slice of a 5-layer cinnamon spice cake with a heavy butter cream icing on top and between the layers. So much for weight control.

From there we went back home where we relaxed about an hour and a half before leaving for a neighborhood association meeting and get together. This is an annual celebration in connection with Halloween and includes a short parade around the neighborhood. She was somewhat reluctant to go, but she enjoyed herself. We were talking with one of our neighbors who mentioned a new puppy that someone had brought. She and Kate walked over to two or three others who were looking at it. At the same time, I became engaged in a conversation with two other neighbors. I looked over to see that Kate was also talking with the group around the puppy. That was good to see.

A few minutes later as we started to walk back to the house, she said, “That’s a nice church.” I said, “What church is that?” She said, “The one we were just visiting.” She was obviously confused. I agreed. Then she asked me the name of our church. As we walked along the street, she commented about the neighborhood and houses along our street. She liked both. It wasn’t surprising that she also commented on the trees. She loves them almost as much as she loves music. As we approached our house, I said, “I like this white house.” She didn’t give any indication that she knew it was our house. She said she liked it as well, especially the contrast of the white with the green of the shrubbery and trees. When we entered the house, she turned very naturally to her right to enter the bathroom off of our laundry room. She wasn’t confused about that.

A few minutes later, we went to dinner. When we returned, I watched the end of the Cowboys/Redskins game while she worked on her iPad. After a while, I pulled up a series of YouTube videos of The Three Tenors for Kate while I took a shower. She was taken with the music and put her iPad down. We watched together for another hour after I got out of the shower. Then we were off to bed. Except for the slow start, it was a good day.