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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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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.

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Another Slow Start, Confusion in the Evening

Once again, Kate slept late, and, once again, I had difficulty getting her up. Since I knew the sitter was coming at 1:00 and that I was trying to get to the Red Cross for my platelet donation, I pushed a little harder to get her up. That may account for the fact that she was grumpier than yesterday. As we prepared to walk out of the house, she apologized twice. We left for lunch at 12:30. I called Mary and asked that she meet us as Panera so that I could eat and go directly to my donation.

Before Mary arrived, I reminded Kate that this was the day for my platelet donation and that Mary would meet us and take her home. That didn’t seem to bother her at all. I was glad about that. When I got home, Kate and Mary were in the family room. Kate was working on her iPad. After Mary left, I walked over to Kate, and she rolled her eyes. It was clear that she didn’t like being left with a sitter, but she didn’t make an issue of it.

It wasn’t long before we went to dinner. Near the end of the meal, she said, “We were really lucky to have those women who took care of him.” I didn’t know who she was talking about. She continued. It sounded like she was talking about her sitters. Then she mentioned how much I helped her. She said, “I could have done it without you, but you made it so much easier.” I asked who she was talking about and discovered she was talking about the helpers who took care of her mother.

She continued to talk about the good care her mother had gotten and how glad she was that we had been able to keep her in our home. She kept repeating the same things over and over for about 10-15 minutes. Then we got up to leave. As we walked by the hostess station, we said goodbye to the owner of the restaurant. Kate said, “I’m so glad we were able take care of my mother.” She said this as though the owner had been a part of our conversation at the table.

Once in the car, she kept repeating how much I had helped her, that she could have done it herself but it was easier because of me. As in all conversations, she did not mention any specifics because she can’t remember, but she retains a strong feeling for her mother, the care she got in the last years of her life, and how good she feels about that. Even after getting home, she continued the conversation. What struck me most is that her feelings are so strong that she couldn’t let go of the topic. I don’t know anything else that can stick with her for such a long period of time.

I went into the kitchen to get something. When I came back, she was working on her iPad. I sat down to write this post. Twenty minutes later, she closed her iPad and said she was tired and that she can really “do this” (work on her puzzles) better during the day. I suggested we go to the bedroom, and I would find something on YouTube that she might enjoy. She liked that. On the way to the bedroom, she seemed confused. She said she didn’t know how she would get along without me. At first, I thought she was talking again about my support in caring for her mother. As she talked a little more, it was clear that she was talking about my caring for her.  She was depending on me to tell her exactly what she needed to do. I told her I would get her a night gown, and she could get ready for bed. She needed help getting her gown on and wanted me to tell her every step to take to get ready. Several times she repeated how much she needed me. This was one of those times when I experienced both a desire to help her as much as I could while at the same time feeling sad that she was recognizing her dependence. This was not as bad as watching her painful anxiety attacks. This was simply a recognition of her dependence, and I assured her that I would always be here for her. She seemed to be accepting her dependence without any fear but with gratitude. Once again, she said how much she needed me. Then,  just as naturally said, “What’s your name?”

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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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The Rest of the Day

In my previous post, I said that Kate had slept late yesterday. Here is the rest of the story. Mary arrived right on time at 1:00. I told her that Kate was still asleep but would probably be up soon. Then I left for Panera to get a bite to eat before going to the Y. During lunch, I began to feel bad that Kate would wake up to find that I wasn’t there. I decided to go back home, wake her, tell her I was leaving for the Y, and that Mary would be with her. That made me feel better, but I realize that she probably forgot that pretty quickly. That was a few minutes before 2:00.

I took a short spin on the stationary bike at the Y and then went to Starbucks to meet my friend, Mark Harrington. We get together almost every Friday after I leave the Y. At 4:00, I got a call from Mary. She said they were at Panera and wanted to know what Kate usually ate.

I got home just before 5:00. Kate and Mary were in the family room. Everything was fine though I did notice a large stack of towels that Mary had put on the dryer. She had apparently picked them off the floor after Kate’s shower. When I went back to our bathroom I noticed two cabinet drawers were open. That’s where I keep our hand towels and wash clothes. There were none in either drawer. I did see one wash cloth and hand towel that appeared to have been used and thrown on the counter. In addition, I found a pair of my underwear and wondered how it had gotten there. Later, I noticed that the drawer where I keep my underwear was open. Underwear was missing. This morning as I was checking each bathroom for things I needed to wash I found another pair.

I’ll never know exactly what motivated her, but I think she was looking for her things and couldn’t remember where they are kept. Her memory of the various rooms in the house and the location of things within them is getting weaker. This can only get worse. It calls on me to be more aware of the time she gets up so that I can guide her where to go and where to find things. I had hoped that putting out her clothes on the chair beside her side of the bed would solve this, but she seems to forget and/or not see them when she gets up. It is also possible that she sees them, goes to take her shower, and forgets that her clothes were out.

Normally, we go out to a nearby pizza place on Friday. Sometimes we go shortly after I get back home. Other times it is as late as 6:00. It’s a popular place, and I try to beat the crowd. I thought about Kate’s having had breakfast/lunch after 4:00 and thought we might need to eat a little later than usual. Then I thought about the times she is ready to eat the next meal as early as an hour or two after the previous one. My next thought was “Why don’t we do something different tonight?” We have a very nice Italian restaurant not too far from us, but we don’t eat there often. I made reservations at 6:00, and we had a really good dinner. It was a nice change from our Friday night routine.

When we got home, I watched a little of the news while Kate worked on her iPad. Because Kate had slept so late, I thought she would have trouble going to sleep. I was wrong. I played a portion of our DVD of Fiddler on the Roof. She enjoyed it but was tired. She went to bed about her normal time. It had been a very short day for her, but she never realized it.

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Sleep Takes Over This Morning

I shouldn’t be surprised that Kate is sleeping late this morning. After all, she got up at 6:00 yesterday morning and didn’t rest at all during the day. This is a day for the sitter. I wanted her to get up so that we could have lunch together before Mary arrives. At 10:00, I put on some soft music to gently wake her. When she hadn’t shown any sign of life at 10:30, I turned up the volume a bit. At 10:45, I sat down on the bed beside her and rubbed her shoulder. She opened her eyes and quickly shut them. I stayed with her a few minutes and told her I would love to take her to lunch. She gave me a little smile. In another minute, she was frowning. I decided to let her sleep some more, but I left the music up. About ten minutes later, she came into the family room looking a bit confused. I asked if I could help her. She said, “What do I do now?” I told her she could take a shower. I walked her into the bedroom and showed her the clothes that she had picked out last night. Then she said, “I want to go back to bed.” I told her that would be fine. That is where she is right now. I’ll just let her sleep. Mary will be able to take her to lunch when she arrives.

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Off to an Early Start

I’ve spoken a lot about Kate’s sleeping late over the past few months, so I should let you know that she was up at 6:00 this morning. That itself is not unusual. She often gets up between 5:00 and 7:00 to go to the bathroom and then back to bed. Today was different. I saw her getting ready to shower. I told her what time it was and that she could go back to sleep if she wanted. She indicated she was ready to get up. I got her towels and clothes ready for her and left her. She was ready for Panera before 7:30.

We surprised everybody at Panera. We had never arrived so early. We even beat the group from the Catholic Church who stop by for coffee and pastries after mass each day. The two people working the front counter commented on our early arrival, and one of the managers came to our table to say she had missed us lately. We have seen several others we know. It was like “old home week.”

Being so early led to a humorous moment. About 9:00 (an hour and a half after our arrival), Kate gave me a look that I recognized as “I think it’s time to go.” We got things together and said goodbye to our Catholic friends. When we got outside, Kate said, “Now we can get some lunch.” I told her it would be a while before lunch and asked if she would like another muffin. She said she would. We turned around before getting into the car and took our place at the table we had just left. Our friends at the “Catholic table” chuckled and welcomed us back. They all know about Kate, and are very understanding.

When we came back in, I set up Kate’s iPad while Kate went over to get a drink. I noticed that she was a little unsure about what to do and asked if she would like me to get her drink. She said she would. Then she asked me where I wanted her to sit. At that moment, we were standing beside our table with her iPad opened to her puzzle. She rarely sees it without my pointing it out to her.

A little later we received a phone call from our daughter. That, of course, was a bright spot in our morning. Before going back to our table, Kate responded to a woman seated near us. It was someone whose husband had been a friend of my dad’s. Both of them died five years ago. It had been that long since we had seen her. We had a nice conversation with at her table. When we were through, Kate asked for my help in getting back to our table that is about 12-15 feet away.

It is now 10:45. It looks like we will be here until we leave for lunch. I’m not sure about Kate, but it’s been a very nice morning for me. I think it’s been good for her. Although she doesn’t talk as much as I do, I think she benefits from the stimulation of being with people. All the encounters are pleasant ones as well. I think it’s good for both of us.

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A Schedule Gone Awry

If you read my previous post, you may remember that Kate rested for about two hours yesterday afternoon. That was after sleeping until 10:30 yesterday morning. Even though she had never had a problem before, I began to worry that she wouldn’t be able to go to sleep last night. We got to bed a little later. Kate was in bed at 10:00. I followed her at 10:35. Sometime after midnight, I heard her turn over and realized she was awake. I’m not sure that she had been asleep at all, but she was very wide awake and talkative. That led to a long conversation during which we both reminisced about our relationship, our children, her parents, our travels. These are all things that we talk about regularly. I don’t think there was a thing that was new including our agreement that we have been a very lucky couple.

Interlaced with the discussion were some of the usual questions about names. Early in the conversation, she mentioned how proud she was of our children. A little later, she asked if we have children. Then she wanted to know all about them. As she often does, she asked me to tell her where we first met.

Knowing that I was likely to be up early, I didn’t play as big a role in the conversation as I might normally do. I felt the need to get to sleep. Finally, at 2:35, I said something about going to sleep. She took the not-so-subtle hint and said she thought she would go to sleep as well. That’s the last thing I remember.

During our conversation, I had decided I would sleep late this morning. Habit got me. I was up at 5:35. I dressed for my walk, ate breakfast, and was out the door a few minutes after 6:30. I walked just over 4 miles and returned home at 8:00. To my surprise, I saw that Kate had gotten up. There are only a few times that she has gotten up that early in the past couple of years, and that was after a good night’s sleep. I was sure that she would sleep until I woke her for lunch. As it turned out, she was ready for Panera before 9:30. That is where we are right now.

The lack of sleep may be having an effect on her. She just asked, “What is your nome?” She knew that wasn’t right and repeated it. She still couldn’t say “name.” I gave her my name. Then she asked her name. Moments later she asked my name again. I just gave her my first name, but she wanted the whole thing. Then she said, “What’s my name again?” She asked where we lived. When I told her, she tried to say “Knoxville.” As she did with “name” earlier, she pronounced it in a funny way. All of this is not dramatically different from what goes on every day, but the look on her face and the way she is speaking makes me think she is more confused than usual.

Today is my Rotary day. That means the sitter comes at noon instead of 1:00. I like for Kate to get her lunch around 11:00 so that we can easily get back home in time to meet Anita. I have frequently had to call her and tell her to meet us here, but that won’t happen today. I suspect Kate is going to be tired. I’ll get her a sandwich in another twenty minutes. Then we’ll go back home. My guess is that she will take a nap.

After Rotary, I will go to the Y. That will keep me awake. I hope we will get our sleeping back to normal tonight.

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More of the Same

Yesterday was a day for the sitter, so I was eager to see if I needed to wake Kate for lunch. I didn’t. She got up a little earlier than I would have liked, but we didn’t have enough time to go to Panera. We went directly to lunch. She was very unsure of herself when she was getting dressed. I had gone back to check on her. She didn’t want me to leave until she had put everything on. This is another sign of her growing dependence on me. The past two days I have been putting her clothes out for her. She hasn’t complained. That tells me that she finds it helpful. It removes the burden of choosing what to wear, something she has always preferred to do.

As soon as we got home from lunch, she said she wanted to rest a while. She was in bed when Mary arrived and came to the bedroom to say hello. Kate greeted her warmly and expressed no discomfort that I was leaving. I came back an hour early yesterday to meet an electrician to fix an electrical outage in our bedroom. I was surprised to find that Kate was still in bed though awake. Mary said she had been there the entire time she was there. That was three hours. It is very rare for her to rest that long. It makes me think she felt uneasy with Mary. I don’t mean that there is a particular problem with Mary herself but that her comfort level is greater with me. This seems to be occurring with her growing dependence on me.

As soon as Kate knew I was home and that Mary had left, she had her iPad under her arm and was ready to leave the house. I told her we needed to let the electrician finish his work. He did that quickly. He found the problem was a short in our ceiling fan. I’ll need to buy a new one. He disconnected the fan to prevent any further problem. Although it was getting close to dinner time, we dropped by Panera for about thirty minutes.

We finished the day by watching another portion of Les Miserables. That seemed like the best part of her day. At least, it produces the greatest emotional response from her, and it’s all positive. I wonder if or when she will tire of seeing it. Until then, I find this a great way to entertain her for an hour or so. Last night, I actually stopped it because I thought she needed to get to bed to make it easier for her to get up this morning.

She asked my name several times yesterday. One of those came right after telling me she loved me. This is not the first time I have observed this juxtaposition of comments. It always surprises me. It is another good example of the difference in one’s memory of names from her feelings.

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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.