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Slow Start Followed by a Recovery

Until the past five or six months, Kate’s sleep pattern had been fairly predictable. She used to go to bed reasonably early (between 8:00 and 8:45) and got up about twelve hours later. Sometimes she rested during the day but rarely went to sleep. The result was a predictable daily schedule for us. We almost always went to Panera and got there between 9:00 and 9:45. Even then, I avoided making any commitments before noon. Now, I find it difficult to predict when she will get up. That and the fact that it takes her much longer to get ready has a significant impact on our daily routine. We often pass up Panera and go directly to lunch.

I had to wake her again yesterday. That made four days in a row. Although she was sleeping soundly the previous three days, she got up with little difficulty. That wasn’t the case yesterday. I started playing music for her at 10:00. At 10:15, I checked on her and found that she was still asleep. I tried to wake her gently several times over the next hour and forty-five minutes. I was able to get her out of bed shortly after noon. She wasn’t ready to leave the house until 1:50 and arrived at the restaurant for lunch after 2:00.

After her shower and before we left the house, she was grumpy. She felt I was pushing her. I obviously communicated that I thought it was time to go. At one point she sternly said, “I’m getting ready.” I said, “I don’t mean to rush you. Well, I guess I really do want to rush you; I just don’t want you to feel rushed.” She laughed. I took that as a good sign. Then as we reached to door to leave, she stopped and said, “I love you.” I think that was an apology.

She was just fine and talkative all the way to the restaurant. She asked how long we had been married. When I told her 55 years, she was surprised and said, “That can’t be. I’m not that old.” I reminded her that we have a daughter who will soon be 50. She asked her name. When I gave it to her, she said, “Oh, she’s married to Greg. He’s a nice guy.” Kate has great difficulty remembering names, but she always recalls his name when I tell her Jesse’s first and last names. Then she started talking about her mother and father and how important they had been in her values. At lunch, she was not as talkative, but she did talk about our meeting at TCU and how lucky we were to find each other. Sometimes, she just says, “Thank you, TCU.”

It was after 3:00 when we got home. A little later, we went out to get our flu shots before going to dinner where we had two separate conversations with people we know. When we got home, we relaxed a while before getting to bed. Kate was in bed by 8:30, but she wasn’t asleep when I got in bed at 9:45. I’m curious to see if I have to wake her this morning and also eager to see how the visit with the sitter goes this afternoon.

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Everyday Life

At Rotary yesterday, several people asked me how Kate and I are getting along. My answer is very much the same as it has been as long as I can remember. I say “remarkably well.” I believe that is just as true as it was when I adopted that as my standard answer. Recently, I have modified it slightly to say that over the past few months she has declined more significantly than in the past. Depending on the situation and the person I am talking to, I may say something like “She is now having trouble remembering my name as well as her own.” Then I add that we continue to be active and are enjoying ourselves. I think that is a reasonable summary of where we are right now. It just doesn’t fill in the details of what is going on. I try to do that in this blog.

I think yesterday presents a good picture of our daily lives. It was our day for the sitter, and Kate slept later than I would like in order for me to take her to lunch before the sitter arrived. I tried to get her up at 9:30. She seemed very tired, but she was ready for lunch around 10:45. That made it easy for her to have her lunch and get back home. She was neither very cheerful nor grumpy and not very talkative. Shortly after sitting down at our table, she asked my name. I told her. Then she said, “Wait, a minute. Say it again.” I did. She repeated it. Not five minutes later, she asked again. I told her. Over the course of the next few minutes, she asked another two times.

I told her that I would be going to Rotary and that Marilyn would be with her while I was gone. She asked me several times in a row to repeat Marilyn’s name. She wanted to know her first and last name. She was never able to remember it, but she did not express any concern about not being able to remember or the fact that I would be leaving her. Marilyn was already there when we drove up. Kate greeted her cheerfully. We chatted a few minutes. Then I told Kate I was going and would be back later. She asked what she could do. I told her she could stay at home and work on her iPad, talk with Marilyn, or look at some of her photo albums. I also mentioned Panera. That seemed to interest her. When I said goodbye, Kate gave me a dirty look.

When I got home, they were in the family room where Kate was working on her iPad. Marilyn said they did not go to Panera. She mentioned that they looked at the photo book Kate’s brother had made for her and that Kate had also taken a nap. After Marilyn left, I walked over to where Kate was seated. She said, “I’m glad you’re back.” I said, “I’m glad to be back. I like being with you.” She said, “I like being with you.” She placed emphasis on “you” as if to say “and not the sitter.” I said something about Marilyn’s being nice. She said, “She’s all right.” I didn’t pursue the discussion. I think we’ll just have to live with this a while.

The highlight of our day occurred later that evening. I should point out that our time together late in the day until we go to bed seems to be the most consistently good time we have. That may relate to the fact that I am more relaxed. By that time our routine is consistent, and I don’t have to think too much about entertaining her. We have a pleasant dinner. We come back to the house where I usually watch the news while she works on her iPad. Then I put on a DVD of a musical or something similar. Last night, I decided to go to YouTube for some of their musical performances. That turned out to be a real winner. Kate loved it. When I decided it was time for us to call it a night, she said, “It’s been a great day” several times. I also thought we had been well-entertained, but I especially liked seeing Kate’s response. We sampled an assortment of music and performers starting with the video of Kevin Spacey and Billy Joel and “The Piano Man” that I had played for Ellen on Sunday. Then I played about thirty minutes of Andrea Bocelli followed by The Three Tenors (Pavarotti, Domingo, and Carrera).

Kate’s confusion seems to be getting worse. That was expressed in a number of ways yesterday. As we prepared for bed, Kate said, “Where are we exactly right now?” At first, I said Knoxville, but she wanted a more specific answer. I told her we were in our house. She reacted with surprise. She seems to be putting more emphasis on knowing where we are now. She has asked that a long time, but it seems to be more frequent now. I can tell by other things she says that she often thinks we are out of town. At dinner last night, she said, “Are we in Fort Worth?” I mention this as another illustration that she is frequently confused, but it doesn’t keep us from experiencing enjoying life. We’re getting along “remarkably well.”

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A Nice Way to End One Month and Begin Another

Good Morning. I hope it is as pleasant a morning for you as it is here. The sun is shining brightly, and the temperature is a little bit cooler. Sometimes days when you don’t do anything special turn out to be especially good. That was certainly true for us yesterday. I was pleased that Kate was up early. So early, in fact, that we beat the group of Catholics who come to Panera after mass. We spent an unusually long time at Panera. We were there 2 ½ hours. Not only that, but we spent the entire afternoon at home after returning from lunch. That was almost 4 ½ hours. It’s hard for me to remember a time when we spent more than 3 hours at home in one stretch (during the day, of course). It would have been when Kate used to work in the yard. During that period of time, she could easily spend as long as 4 or 5 hours working outside. That hasn’t happened in at least two years.

During our time at home, Kate worked continuously on her iPad. She does have more problems working puzzles now than in the past, but she feels comfortable asking for my help. Her biggest problem is accidentally getting into the puzzle store to buy more puzzles. The creators of the app she uses make it very easy to buy more puzzles. I do that once in a while to make sure she has a good supply, but it doesn’t mean a lot to Kate. She has her favorite puzzles and works them over and over, often repeating a puzzle immediately after completing it.

For a long time, I thought it was just completing the puzzles that was appealing to her. Recently, however, she comments a lot on the beauty of the colors. She has one puzzle in particular that she frequently points out to me. She likes the colors and the kitten in the middle of a bouquet of flowers.

Apart from getting herself into the puzzle store, the second biggest problem is her eyesight. She often loses puzzle pieces when they are on top of pieces that are already in place. I admit that sometimes the patterns make it challenging, but it is mostly her eyesight that is a problem. I often move the pieces she can’t see to the side where they are clearly visible. I’m going to buy her some reading glasses and see if that helps. She’s had plenty of them in the past, but they get lost or broken rather quickly.

There are also two other possible reasons she doesn’t see well. One of those is her cataracts. In discussions with her ophthalmologist, we have decided not to have surgery. That’s true at least for now, but the likelihood of surgery decreases as her Alzheimer’s progresses.

The other reason involves dementia itself. I don’t fully understand but people with dementia often don’t notice things that the rest of us would see easily. One of the best examples is that Kate often doesn’t notice her iPad that is in a bright red case. I bought that case to make it easy to find. She often looks right over it. It’s not that her eyesight is that poor. She has 20/60 vision. That would make reading a problem and also identifying the right puzzle piece, but not seeing larger objects lets me know there is something else going on.

Kate is awake but not up yet. I expect she will be soon. We have a new sitter coming today. She is filling in for Anita who had minor surgery last week. I’m not sure when she will be back, but I feel good about Marilyn. While she is here, I will get to Rotary and then to a United Way meeting. I’m hoping for another good day and believe it is likely to happen.

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A Nice Day, But More Confusion

Kate surprised me by getting up early yesterday. She has always been slow to wake up, but I notice more confusion upon waking now. I walked in while she was brushing her teeth. Her first words to me were, “Who are you?” I gave her my name. Then she said, “What’s my name?” When I told her, she said, “You got it.” Then I wasn’t sure if she was just playing with me or if she really didn’t remember her name.

I think her confusion is why it takes her so long to get ready in the morning. Just taking a shower (usually short) and getting dressed sometimes takes over an hour. It often takes her longer to dry off after a shower than to take it. Since I am selecting her clothes, that doesn’t require much time except when she decides to wear something other than what I have chosen. The difficult part is getting the clothes on the right way. In the morning, I usually let her do that on her own. At night, however, I am usually with her when she undresses and puts on her night gown. It is not unusual for her to ask for my help. I see how challenging that is. That leads me to imagine greater difficulty getting fully dressed. I have started checking on her when she is getting dressed and ask if she would like my help. Sometimes she says she would. Most of the time, she likes me to leave her alone to take care of it.

Because Kate was up early, we got to Panera for the second day in a row. We were a little late, however, to see many people we know. Only two of the group from the Catholic church were there. They told us they had had a big crowd that morning.

At lunch, I said something that I wish I hadn’t. Our server asked us if we had done anything special during the week. At first, I said no. then I said, “Well, we watched Les Misérables for the seventh time in about seven weeks.” Kate was surprised. After the server left, she asked, “Did we really watch it seven times?” I told her we had. Then she said, “How could I forget that?” I said, “I don’t know.” Nothing more was said, and I saw no sign of any lingering concern on her part. I do wish I hadn’t said that. I don’t like to do anything that might cause her any additional anguish.

During our meal, Kate said she was tired. I thought that she might rest when we got home, but she didn’t. We spent the afternoon there. Late in the afternoon, we called our oldest grandson, Brian, who was 20 yesterday. Before we placed the call, Kate said, “I’ll just let you talk to him.” I don’t ever recall her saying anything like that before. I suspect it is another reflection of her insecurity. She is quite aware that her memory is poor. It does make conversation more difficult for her. We had a nice conversation with him and then talked with our granddaughter as well.

After the called ended, I asked if she would like to go to Barnes & Noble. She said, “What would we do there?” I told her she could work on her iPad. She didn’t want to go. Now that I reflect on it, I suspect she had forgotten that we normally go there to pass time in the afternoon. She seemed a little bored, and I thought it would be good to get out of the house. Instead we remained at home for another 45 minutes and then had an early dinner.

She wasn’t as chatty at dinner. She didn’t even ask my name or where we were. She was also little confused at home. She is clearly getting mixed up on the rooms and where she is to go. The previous night we had finished most of Les Miserables. I put it on and backed up about 45 minutes that we had watched earlier. Once again, she was enraptured right away. When it was over, we were off to bed. It was a little earlier than usual, but I thought that might help in getting her up this morning.

Just before 7:00 this morning, I heard her and went to the bedroom. She had just come out of the bathroom. I asked if she needed anything. She said she didn’t know. Then she said, “I think I’m supposed to go someplace.” I told her I couldn’t think of anything. She said, “I think it was to get my hair done.” I told her that wouldn’t be until next week and that it wasn’t yet 7:00, so she could rest a little more. About thirty minutes ago, I started some music. She hadn’t stirred, so I sat down on the bed. She looked up, and I told her I would like to take her to lunch. She said, “Okay.” I went back again at 10:35. She was awake but still in bed. I told her again that I would like to take her to lunch. She said she would like that. Then I said, “Of course, you would have to get up.” She said, “What will I wear?” I pointed to the clothes I had put on the chair beside her bed. I told her I had the shower all ready for her and pointed in the direction of our bathroom. She looked puzzled and said, “There?” I said yes. She didn’t look like she believed that was the bathroom. I told her to come with me, and I would show her. She got up and must now be in the shower. We’re running a little late, but we will make it. I’ll probably ask Anita to meet us at Panera.

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Our Day Yesterday

Sometimes Kate and I seem to move in opposite directions. As she sleeps later, I seem to be getting up a little earlier. Yesterday I was up at 5:00. That gave me enough time to have breakfast before leaving for my walk. I was still able to get out by 6:00 and took an unusually long walk, five miles. The past couple of weeks I’ve been walking between 4-4.5 miles. I walked a little longer yesterday when I got into two separate conversations with neighbors who also walk about the same time.

Kate and I spent less time together yesterday. I woke her up at 11:15 so that we could go to lunch together before the sitter came at 1:00. I had a scare while she was in the shower. I heard a scream and a thud. When I arrived, I found her lying on her back on the floor. She was unable to explain what happened. The shower was still on. She was wet and holding a towel. I plan to do what I can to get her to shower in our bathroom where we have a walk-in shower. That would be much safer. Fortunately, she was not injured at all and has not expressed any signs of pain so far. I’ll be eager to see how she feels this morning.

Because we were short on time, we went to Panera and arrived just after 12:30. I called the sitter and asked that she meet us there. There was no problem with the handoff to Mary. Kate was quite comfortable when I left. I finished my meal and went to the Red Cross where I donated platelets.

After I got home and Mary had left, Kate frowned and said she was glad to see me. I told her I had missed being with her. She said, “I got along fine. I just like to be with you.” A few minutes later, we went to dinner. We had a good time. She got our conversation started when she made reference to what great experiences we have had. Since she can’t remember them, I took the lead and filled in the specifics. I am glad she retains her feelings even though she doesn’t remember the details.

When we got home, I watched the PBS Newshour while she worked on her iPad. She was having difficulty. Over the past few days, I have noticed that she periodically forgets which icon to touch in order to open her puzzle app. This time, however, she wanted to look through the photos on her iPad but didn’t know how to do it. I set them up for her, but there were so many it was an overwhelming task. She gave up. I hope we are not approaching the time when she has serious problems working her iPad. That would be disastrous. That represents the only thing she does on her own.

I suggested that we adjourn to the bedroom and play the last part of Les Miserables. She liked the idea. That worked well, but we had finished by 8:15. I suggested that I put on something for her to watch while I took my shower. I selected Fiddler on the Roof. It seems to generate the most interest after Les Miserables. That turned out to be a great success. While I was in the shower, she called to me expressing her enthusiasm. Several times I heard her belting our “Tradition! Tradition!” I don’t recall her ever doing that before. After a while she was tired. I helped her get ready for bed, and she was asleep quickly.

I don’t try to count the number of times she asks my name, but I suspect it was probably ten times today. She tries so hard to remember, but I can easily tell that she never has it down even after I tell her three consecutive times. The good news is she seems to recognize me as her husband although I am never sure.

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I see the coming of a new morning routine.

Once again, I had to wake Kate this morning; however, it was a little easier to get her up than yesterday. Once again, to save time we went to Panera for lunch and got back just before the sitter arrived at 1:00.

Up until now, I have thought of her sleeping late as erratic. In fact, that’s what I said in the message to her doctor just yesterday. It now looks like we are in the process of a fundamental change in our normal routine. I have a feeling of regret about this. I feel for her as I know this signals a new stage of her disease.

I also feel for myself because it means reducing my own social contact. It’s been over two weeks since I saw one of my favorite acquaintances at Panera. For the past two or more years, he and his wife and Kate and I have shared a few moments of conversation almost every morning. He and I are quite different politically and religiously, but we both enjoy social contact and conversation. Both of us like to talk, but each gives the other a chance to speak. I miss him.

In some ways, I wish I had a sitter for the morning rather than the afternoon. The problem is that neither of our sitters is available for those hours. In other ways, it’s probably a good thing for me to have a block of time to myself. There are household responsibilities that I could take care of. I know I won’t have any problem finding productive ways to occupy my time. As time goes by, I might very well see that simply relaxing would be a productive way to take care of myself. Of course, I will also increase our in-home care. When that happens, I will be freer to get out.

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A Late Lunch Today

This is one of those days when Kate has slept late. I tried to wake her around 11:00. She was so sleepy that I gave her more time. Finally, at 11:50, I made some progress. She got up and showered. She’s been out of the shower for 45 minutes. A few minutes ago, she still wasn’t dressed even though I had gotten out everything for her to wear. She had taken everything to the bathroom where she showered but came back to our bedroom and had forgotten that I had gotten clothes for her. She asked me to get them. I think she should be about ready. This is going to be a short day, at least for the two of us together.

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Who am I? (I’ve watched Les Miserables so many times over the past several weeks that I want to answer Jean Valjean.)

We’ve been at Panera for thirty minutes. Kate is working jigsaw puzzles. I’ve been checking and responding to email. A minute ago, we had the following conversation.

KATE: “Who are you?”

RICHARD: “I’m your husband.”

KATE: “But what is your name?”

RICHARD: (Knowing she wants my full name.) “Do you want my first name?”

Kate gives me a dirty look.

RICHARD: “My name is Richard.”

KATE: “What else?”

RICHARD: “Creighton.”

KATE: “Oh, I knew that; I just forgot. What is my name?”

RICHARD: “Maybe I should ask you that?”

Kate gives me another dirty look.

RICHARD: “Kate Creighton.”

KATE: “That’s right.”

We play this game frequently. I am reasonably sure that sometimes she doesn’t remember her own name. (I know she doesn’t always remember mine.) I am never sure at the particular time if she is just playing the game with me and really knows her name or if she really doesn’t (at that moment). This was one of those times when I’m not sure.

I hope the tone of this exchange comes through the way I intended it. There is a serious undertone because she really does forget my name. On the other hand, the way she enters into this “game” seems very light-hearted and innocent. It is very much the way a small child might play a pretend game. I often wonder if she feels this is a safer way for her to find out my name than to ask me in a more serious fashion. I guess that is one of those things for which I’ll never have an answer.

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Slept Late Again Yesterday

Yesterday I woke Kate about 11:45. She was sleeping soundly and did not get right up. Our housekeeper was here, and I wanted her to change the sheets in our bedroom. In addition, I had made a 2:00 appointment for Kate to have a massage, so I got her up after twenty minutes or so. I had gotten her clothes out so that she wouldn’t have any trouble finding something to wear. I went to check on her just as she got out of the shower. I showed her the clothes and started to leave. She wanted me to stay. She doesn’t do this a lot, but sometimes she wants me to be around in case she needs help. I know it may not be long until this becomes a new routine.

It was 12:50 before we left for lunch. We went to Panera since it was convenient to our house and the spa where she gets her massages. After her massage, we came back home for about an hour before going to Barnes & Noble. We were there until 5:15 when we went to Bonefish Grill for dinner.

It was an unusual day in that Kate did not ask me to tell her anyone’s name. She was somewhat quieter but seemed to be in good spirits. After dinner, each of our children called which provided a nice boost. Then I got out Kate’s night clothes and put on a DVD of Fiddler on the Roof. She continued to work jigsaw puzzles on her iPad while the movie was playing, but she was listening and enjoying the music. It wasn’t long before she was sleepy. We called it a day.

It is now 9:30. I just looked in on her. She is still sleeping soundly. Since this is a day for the sitter, I would like her to get up before 10:30. That will give her enough time to get ready for the day so that we can have lunch together before the Mary arrives. I will probably wake her if she doesn’t get up on her own. I am hoping she responds more enthusiastically about Mary’s being here than she did on Monday with Anita.

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Living in the Moment

People often talk about the importance of mindfulness and living in the moment.  That is something that has taken on greater meaning for me since Kate’s diagnosis. I believe we’ve done a good job of that. More recently, as Kate’s memory has declined, living in the moment has come to be more literal for her. For that reason, I find myself trying even harder to make those moments as pleasurable for her as I can.

I have a plan in mind for each day. I try to avoid rushing her, but I do select a variety of things for us to do every day. A good example would be our morning trip to Panera. I know it’s something she likes to do, but I don’t wake her up. At least twice last week, she slept until almost noon. In those cases, we went directly to lunch. There are occasions when I do wake her. That happens on a few occasions when I have made lunch plans for us.

Yesterday was one of those. My brother Larry and his wife, Margaret, were passing through Knoxville. We were supposed to meet them at Casa Bella for lunch at 12:30. Knowing that it can take up to an hour and a half for her to get ready, I started gently waking her around 10:00. She seemed quite tired, so I let her sleep a little longer. She finally got up just after 10:30. I had all her clothes out for her. That enabled her to get ready without rushing.

At 11:30, I got a call from my brother. They were making better time than anticipated and were to arrive at the restaurant a couple of minutes after noon. At that point, Kate was still not dressed. I decided it might be better if we ate at a place closer to our house. That kept me from rushing Kate. The alternative plan worked perfectly. We were walking from our car to the restaurant as they drove up. We had a pleasant visit with Larry and Margaret, and they were on their way less than two hours later. That gave us the opportunity to come back to the house for an hour before getting our hair cut.

After our haircuts, we had another hour before we needed to leave for Broadway Night at Casa Bella. It was another good evening of music, food, and fellowship. We were home by 9:00. This is the only evening activity I schedule these days. All three of the local theaters have matinees on Sunday. We always attend those. This is the way I manage to keep us active but not racing from one thing to the next. It seems to be working.

I wonder if my management of this schedule qualifies as mindfulness on my part? I am clearly trying to be mindful of Kate’s needs, but I often discover I overlook other things that I should have done. I may have to meditate on this.