A Late Start, But A Great Finish

As I had expected, Kate didn’t want to get up yesterday when I left her to attend my luncheon. I had prepared the sitter that she might want to sleep much longer. I even mentioned that if they were just getting to Panera for Kate’s lunch around the time I was to return home, I would meet them there. What I didn’t expect was to find that Kate was still sleeping soundly when I got to the house a few minutes before 2:00. The sitter told me she tried to get her up three times. Each time Kate said she wasn’t ready to get up.

After the sitter left, I went to the bedroom and sat down on the side of the bed where Kate was sleeping. She opened her eyes and smiled. That was a good sign. I asked if she were ready for lunch. She said, “What do you want me to do?” I told I thought she should get dressed and let me take her to lunch. She got up without any coaxing. It was a little after 3:00 when we left. I decided it was too late for lunch and went to Barnes & Noble where she got a muffin.

We arrived there close to 3:30. After sitting down at a table, Kate asked me at least four times in a short period of time where we were. She had done the same thing a couple of times in the car on the way there. It wasn’t long before she said, “Don’t play games. Are you going to tell me where we are or not?” Of all the times she has asked something over and over, she’s never said that before. That didn’t end it, of course. Within a few minutes she asked again.

Knowing that the muffin wouldn’t hold her long, I decided to leave for dinner before 5:00. This would not have been the first time we have eaten so early. (I remember growing up in West Palm Beach. We used to joke about all the old folks who came down from the North to spend the winter. There were lots of restaurants who catered to them and had early bird specials that drew large crowds. Now I understand a little better why they ate so early.) I think it makes sense for us to get back home early. Kate seems to go to bed earlier when we do that. I like to think that it keeps her from sleeping so late in the morning, but I’m not sure that works at all.

Our day ended very much like the day before. I watched the news while Kate worked on her iPad. Once again, she was struggling to understand how to work her puzzles. I fear that she may lose this ability far sooner than I care to believe. When I saw her put down her iPad in frustration, I walked over to her. She said she was tired and thought she would get ready for bed. I got her night clothes for her and went back to what is becoming our best friend, YouTube. I began with a video of Renee Fleming singing an aria from the opera Norma. Neither of us has seen the opera. Prior to a few weeks ago, I had never heard the aria. I discovered it while browsing YouTube for something new to watch. It is a beautiful aria, and Kate was mesmerized. She didn’t get out of her chair until it was time for bed. We watched a pot pourri of music videos before then. After Renee Fleming, we watched a beautiful choral rendition of Samuel Barber’s “Adagio.” We followed that with music by The Piano Guys, The Tabernacle Choir, and an orchestral flash mob playing “Waltz of the Flowers” in a shopping center in Israel. This brought back memories of my childhood. I loved it the first time I heard it in the sixth or seventh grade. I can’t tell you how engaged Kate was during all of them. She was more emotional than usual, at times bordering on tears. The last video was The Tabernacle Choir singing “Come Thou Fount of Every Blessing.” It had quite an impact on Kate. Ten minutes afterward she still shed a few tears.

Because music has been so important to me, I have taken great pleasure in Kate’s enjoyment. It’s not that she hasn’t always liked music. It has played a big role in our marriage. Alzheimer’s seems to have enhanced both the impact of music and the breadth of types of music she enjoys. She doesn’t like everything. She is actually bothered by most of the music we hear in restaurants, but that leaves us with a broad range of music that we both like. With her memory loss, conversation is difficult. But it is a real joy to sit with her in our own house listening to music together and being as moved as we would have been in the grandest concert hall. These are moments I will cherish in the days ahead.

Sleeping Later Doesn’t Always Mean Later

As I have mentioned in recent posts, Kate now sleeps later than she used to although sometimes she surprises me. Today was one of those. I was listening to a book by Donna Leon while taking a 30-minute walk around the house. (Yes, I know it sounds boring to walk in the house, but listening to books helps. Besides I no longer feel comfortable leaving Kate alone.) Just as I was ending my last circle from kitchen, to family room, to living room, to dining room, and back to kitchen, Kate opened the door to the family room. It was 7:30, very atypical for her. In fact, I think this would be the earliest she has gotten up during the past eight or nine months.

When I walked over to her, she asked, “Where are my clothes?” I often put them out before I go to bed but didn’t do so last night. I intended to do that this morning but thought I would have more time. I told her I would help her. She asked again where her clothes were. I detected that she wasn’t just asking the location of her clothes for the day. She was looking for all of her clothes to pick out something. She no longer knows where we keep anything. A little later I discovered that she had been in my closet. She was no doubt looking for her things.

I walked her back to her room. As we walked along the hallway, she stopped to look at a picture of her mother when she was in her late teens or early twenties. She said, “Who is that?” I told her it was her mother and said, “She was a beautiful woman.” She said, “Is she gone?” I told her she had died thirteen years ago. She was sad. Then I showed her pictures of her grandparents and the old Franklin home in Fort Worth. When we got to her room, I asked if she would like me to pick out something for her. She did. I gathered several things together, and we walked back to our bedroom.

I laid out her clothes on the bed and she said, “Don’t you want me to take a shower?” I told her that would be nice, and she said, “Who are you?” I gave her my name and explained that I am her husband. She was mildly surprised but not alarmed by the news. We walked into bathroom where I turned on the shower and left her to bathe.

I learned two lessons. The first is that I should be sure to get her clothes ready the night before. The second involves a new video monitor I set up yesterday. It is simply a small Amazon Cloud Cam that connects to my computer, iPad, and iPhone. It seems to work well, but it’s of little help if I don’t check it. <g>

Afternoon Naps

For what I believe is the third day in a row, Kate has gotten in bed right after returning from lunch. There were times like this in the distant past; however, they usually occurred after she had gotten up early that morning. She has often talked about being tired, but she has never acted on that the way she is doing now. She won’t rest as long today because I made an appointment for her to have a massage at 3:30. After that, we will have about an hour before leaving for jazz night at Casa Bella. It will be telling if she rests again during that break.

Sleep and No Sleep

Kate’s sleeping continued to have an impact on our schedule yesterday and early this morning. I wasn’t too surprised when she got up earlier yesterday. It was around 10:00. She got up and showered and then went back to bed. When she goes back to bed like this, she doesn’t usually go back to sleep. Most of the time she just relaxes and runs her fingers through her hair. That is what she did yesterday. Had I let her, she might have stayed in bed too long for us to have lunch together. I didn’t want that, so I got her up and dressed. She was a bit more assertive about her independence getting dressed but had to ask for help several times. Our timing worked out well. Without rushing, we were able to get to lunch and back home about fifteen minutes before Mary arrived.

When we got home, Kate followed me to the bedroom and got in bed just as she had done the day before. That gave me a few minutes to talk with Mary before I left. She told me that Kate didn’t want to get up the last time she was here and that she (Mary) didn’t want to push her too hard. I told her she did the right thing although I regretted that it was 3:15 before she got up.

I walked Mary back to the bedroom before I left and told Kate I was going to the Y. She gave Mary a warm greeting. When I returned, they were talking in the family room. I didn’t have time to talk privately with Mary, but I got the impression that Kate had rested most of the time I was gone.

Around 3:00 this morning, Kate said, “Hey.” I said good morning and told her the time and that she still had a good bit of time to sleep. We didn’t talk much, but I could tell she was awake about an hour.

At 4:30, she got up to go to the bathroom. She got back in bed about twenty minutes later. That put me pretty close to the time I feel comfortable getting up. Having been mostly awake since 3:00, I decided to sleep a little longer and got up an hour later.

Apart from the way her sleep has changed our routine, we had a good time together. She did tease me a little after getting up yesterday morning, but it wasn’t mean-spirited at all. So we enjoyed the day. We just had less time together.

I don’t know what to expect for today. Will she get up early again because of all the sleep she got yesterday, or will she sleep late because she lost a couple of hours sleep during the night? I’m guessing it will be the latter. Fortunately, we have no special commitments. My only concern will be getting something to eat before noon. I have some granola I can snack on to hold me over until she is up.

The (Daily?) Report on Sleep and More

Each day seems to give me added reason to believe that Kate is noticeably drifting into another stage of her Alzheimer’s. That’s been true the past two days. As I had suspected, she got up earlier two days ago (Monday). I was in the kitchen when she walked in at 9:25. She didn’t say a word. She just looked at me. I said good morning and asked if I could help her. She said, “I want to take a shower.”  I got up from my chair and gave her a hug. Then I took her hand and told her I would take her to the shower. Like a little child with her parent, she held my hand until we reached the bathroom. Then she wanted me to tell her exactly what to do. I left her in the shower. I checked on her in another fifteen minutes and found that she was back in bed.

Since the sitter was coming at noon, I decided to let her rest a little longer. I got her up over an hour later. That gave me enough time to have her dressed for lunch. I called the agency and asked them to have Valorie meet us at Panera. The timing worked out well. Valorie arrived right after I had ordered Kate’s meal. Although I am sure Kate did not remember her, she gave her a warm welcome, and I left while they waited for Kate’s lunch to be ready.

Even though I had let her rest another hour, having gotten up earlier that morning caught up with her during the afternoon. She was resting in a chair in the family room when I got home at 3:30. Valorie said she had not been resting long, but Kate did not acknowledge me when I came in the room or after Valorie had left. I went over to speak to her. She was awake but tired. After a while, I asked if she would like to lie down on the sofa. She did and continued resting for another two hours.

As in the past, I wondered if she would be able to go to sleep at her regular time that night. At 9:30, she was enjoying working puzzles on the iPad and didn’t want to go to bed. She did, however, accept my suggestion that it might be better to go to bed so that she wouldn’t sleep so late yesterday.

I let her sleep undisturbed until 11:00 yesterday when I turned on some choral music that she likes. At 11:15, I went to her bedside and sat down. She silently acknowledged my presence with her eyes. I asked if she were ready to get up. She nodded that she was not. Then I said, “Your husband would like to take you to lunch.” She said, “You’re not my husband. I wouldn’t marry you.” I can’t remember exactly what she said after that, but it was something that made me think she thought I was Frank Sinatra. I didn’t push her on this. I asked again about getting up. She said, “I’m not getting up.” Then I brought up lunch again, and she said she would like to eat. I told her I would help her get up and dressed. To my surprise, she accepted that. My only explanation is that she is getting used to doing what I suggested and did it reflexively.

Once she was up and dressed, she was in a talkative mood. She teased me (a bit harshly) as we were about to leave for lunch and in the car. Once inside the restaurant, we were greeted by one of our regular servers whom we hadn’t seen in several weeks. We chatted with her as we ordered our meal. I think that changed Kate’s tone a bit. We had a very nice conversation at lunch. During much of the time, I was trying to explain to Kate something I had said or something that the server and I had talked about. Some of our conversation had to do with music. The music on the restaurant’s sound system was strikingly different today. It was mostly 50s music. Kate and I recognized almost every song.

After lunch, we went to Best Buy to return a DVD player that I bought a couple of months ago. It is a different brand than the Samsung TV to which I have had it hooked up. It had never operated as smoothly as the Samsung player we had previously. The trip to Best Buy turned out to be another social occasion. Kate was in a playful mood and talkative.

When we went to the customer service counter, I noticed that the man in front of me was returning one SONOS audio speaker for a SONOS subwoofer. I also have a SONOS system and mentioned that to him. That led to a conversation about our experiences with it. As he finished up his transaction, Kate went over to him and put her hand on his shoulder, pointed to me, and said, “I should have warned you about him. He just talks and talks.” After he left and I was explaining why I was there to the woman behind the counter, she got involved in a conversation with the young man behind us. I didn’t catch all that was said, but she was joking with him, probably about me.

When I was finished, I went to the back of the store where the DVD players are located. I got a salesman right away and told him what I wanted. He led me to it, and we quickly took care of the transaction. As we started to walk away from him, I saw the display of SONOS equipment. I mentioned my audio system. Kate then went over to him and said, “Don’t let him get into this. He will talk all day.”

On the way out we walked past a display of baby monitors. I’ve been thinking about buying something like that to monitor Kate in the morning while I am in the kitchen and stopped to look. Kate had no interest in the monitors, but there were two large photos of babies behind the monitors. She loved them and commented on their beautiful smiles. A moment later, we passed by a life-size cardboard display of a man. She stopped and said goodbye to the man in a way that was very typical of a small child.

When we got home, Kate walked directly to the bed, got in, and pulled the covers over her. She remained in bed for over two and a half hours before I went into the bedroom to see if she was ready to get up. When I sat down on the bed, she looked up at me. I told her we would be leaving for dinner in forty-five minutes and asked if she were ready to get up. She indicated she wasn’t. I told her I would let her rest a little longer and would get her up for dinner. She said, “Good.” This was the first time I had let her rest so long. This meant that she had been up only three and a half hours all day.

As promised, I went back a short time later and got her up. We had nice dinner. As she often does, she said she would probably “crash” when she got home. She didn’t, but she did get to bed at 9:45. That is pretty typical. The question now is what time she will get up this morning. This is another day for the sitter. I hope she will be up in time for us to have lunch before Mary arrives. If not, I’ll let Mary take care of everything.

Sleeping late has made a significant difference in our daily morning routine. I can’t help wondering if we are moving toward a similar change in our afternoons. Just as we have seen a dramatic decrease in the number of visits we make to Panera in the morning, we are beginning to go less often to Barnes & Noble in the afternoon. Our lives are changing.

Follow-up on Sleep

Kate slept about two hours yesterday afternoon. We had about forty-five minutes before I had planned for us to have dinner. I suggested looking at her photo albums. She liked that. We started with an album of her father’s family. She was quite interested and talked about her feelings for her family as we went through it. When we finished, we picked up the “Big Sister” album that her brother Ken had made for her this past spring. The photos in this one are larger than the other album. That made it much easier for her to identify the people in the pictures. Once again, she is attracted to the same pictures she mentioned previously when we looked through the album. One of those pictures is of her with her brother when she was about five or six and Ken about three. She almost always talks about the two of them in the third person. “Aren’t they cute.” “Look at their smiles.” Sometimes it is clear that she doesn’t realize that she and Ken are the two children. Other times I think she does. She also pays particular attention to the smiles. The pictures she likes best have nice smiles.

After dinner, we came back home where I put on YouTube videos. This time I chose a couple of opera singers, Kristine Opalais and Juan Diego Florez. I played a good two hours worth before we went to bed. She enjoyed them and didn’t want me to turn them off, but I told her they were videos, and we could play them again whenever we wanted.

She went to sleep rather easily and slept until 6:00 this morning when she got up to go to the bathroom. We have the sitter today. I also go back to Rotary after the Christmas and New Years break. If necessary, I’ll let Valorie get her up and take her to lunch. I suspect, however, that she might be up earlier today. She has had quite a bit of sleep in the past few days.

Addendum on Sleep and Confusion

Kate still seemed tired this morning after waking her. I let her stay in bed another thirty minutes before getting her up for lunch. I am sure she would have remained in bed much longer without my encouragement to get up. She was happy to have me help her get dressed. At one point, I asked if she thought I was rushing her. She said, “No. You’re a good daddy.” As I had done earlier, I let it go without correcting her about my being her daddy. On the way to lunch, she said something else about my being her daddy. A few minutes later, she asked, “Are you my daddy?” I said, “Actually, I am your husband.” She gave me the usual surprised look and said, “And I’m your wife?” She didn’t raise any further questions. I couldn’t help wondering if she had asked the question because she herself was beginning to question whether I was her daddy. I’ll never know.

Driving to and returning from lunch, I played a CD that I bought three or four years ago in Memphis while we were visiting Jesse and her family. It is a compilation of show tunes and old standards that are quite familiar to our generation. I played this several days ago, and she had liked it. She was just as taken with it today. On the way home, she started singing with “Some Enchanted Evening.” Then she wanted me to sing with her. It is an inexpensive CD that has singers who are unidentified. During almost each song, Kate asks me who is singing. Each time I tell her I don’t know and that the company who made it kept the costs down by using unknown musicians. Of course, there is no way she can remember.

On the drive home, she mentioned that she was tired and might take a nap this afternoon. She often says that but forgets soon after we get home. That wasn’t true this time. When she walked into the family room, she headed toward the sofa and asked if she could just rest a while. I told her that would be fine. That was about an hour and fifteen minutes ago. She has been sleeping soundly, not just resting. It makes me wonder about yesterday. I didn’t watch her as closely as I have done today. She might have actually slept then as well. She just opened her eyes and said, “Hey.” Her eyes are closed again. I think I will let her sleep another hour or so if she wants to. She must need it.

Sleep

There are a number of recurring themes that appear in my posts. One of those is Kate’s sleep. For most of the years since her diagnosis, I didn’t feel it necessary to comment on sleep. Looking back, I believe that was a result of Trazadone’s doing just what it was prescribed to do. Prior to that Kate had often awakened in the middle of the night and couldn’t go back to sleep. Her own prescription for that was listening to books on her iPod. She did that for several years, some of which preceded her diagnosis. After her doctor introduced Trazadone, she slept through the night without a problem. That put us on a regular schedule though sometimes she went to bed earlier than she had before. I now realize that probably related to what time she took her evening meds.

It wasn’t until this past spring that I noticed a change in her sleep. Her pattern was more erratic. She started sleeping later than before, but she sometimes got up earlier. We took her off Trazadone thinking that it might be the cause of the change. It did make some difference, especially at first. She began to go to bed a little later and closer to the time I went to bed. Over the ensuing months, she has gotten into a pattern of sleeping later. She is also much slower to get ready once she is awake. That is especially true when I wake her.

That is background for what I have observed in the past few days. Two days ago while the sitter was here, she didn’t get up until 3:15. I was concerned that she might not be able to get to sleep that night. I needn’t have worried. She went to sleep at her regular time and slept through the night. Not only that, she only got up when she did because I got her up. That was around 11:00. I thought she must have had plenty of sleep during the previous 24-36 hours.

As often happens, I was wrong. When we returned home from lunch, she wanted to know what she could do. I suggested that we sit in the family room and go through one of the photo albums of her father’s family. She liked the idea and enjoyed looking at the photos on the first few pages. Then she said she was sleepy and asked if we could look at it later. I told her that would be fine. She lay down on the sofa and rested for a full two hours before I got her up. It was almost 5:00. I told her it wouldn’t be long before going to dinner. She said she would like to go right then. First, she wanted to go the bathroom and brush her teeth. It was almost thirty minutes later that we left.

Once again, I thought she might have trouble going to sleep last night. Again, I was wrong. She had no problem at all. I guess the next question is “Will she sleep late again this morning?” I’m not making any predictions. I’ll just wait and see. One thing seems to be sure. Even though she surprises me by getting up early some mornings, she needs more sleep now than she used to. What this means as we go forward is unclear. I know from other caregivers that their spouses often slept more than Kate. I am beginning to accept that Kate is on her way to spending more of her time in bed. As always, time will tell.

A Short Day for Kate

Yesterday Kate was tired and didn’t want to get up. At 10:30, I asked her if she would like me to take her to lunch or let her sleep longer. She opted for sleep. I decided it would be a good chance to let her get accustomed to Mary’s helping her. I kept poking my head in the bedroom thinking that she might wake up before I left. She didn’t. I did bring Mary into the bedroom and told Kate she was here if she needed anything.

After leaving, I began to wonder how long Kate would sleep, but I didn’t call Mary to check.  I decided it was best to leave things up to the two of them. I got home a few minutes before 5:00 and found that they weren’t at home. I knew that meant they were at Panera. My immediate thought was that she had gotten up very late and was eating a late lunch. They were back home a few minutes later. I discovered that I was right. Mary said she had tried to get Kate up a couple of times but didn’t want to force her. She finally got her up at 3:15. It took almost an hour for her to get ready. They got to Panera at 4:15.

I hadn’t eaten a regular lunch. I ate a banana and snacked on some granola before leaving for the Y. I was ready for dinner when I got home. Kate is sometimes ready to eat shortly after eating a meal. I decided it probably wouldn’t bother her if we went directly to get our Friday night pizza. I was right about that. On the way to the restaurant, I asked her about going to Panera with Mary. She told me they had just stayed at home. She ate her half of the pizza just as easily as she usually does.

The next question I had was “Will I have trouble getting her to sleep?” That turned out not to be a problem at all. We got in bed about our usual time, 9:45. I went right to sleep and was unaware that she had any problem. She slept through the night and is still sleeping at I write this blog at 8:50. Will she get up earlier this morning? I don’t know. I have an idea that she may not have slept as much yesterday as it appeared. She was in bed, but lately she has been staying in bed longer after waking up. It makes me wonder if she wakes up but doesn’t know what to do. This is something I will pay more attention to in the days ahead. She may actually need me to get her up.

Christmas Eve

We had a nice day yesterday. It matched the activity level we have at home. We got out and had good times with Jesse and her family, but we had breaks that make it easier for Kate.

She got up before 10:30. That got us off to a good start. I don’t like having to wake her. That worked well for our plans to meet Jesse, Greg, and the boys for lunch at a new diner downtown. We met them at 12:30 and had a good time as well as a good lunch. Kate got a very large Turkey Club sandwich. It was about 4” high. I thought she might have trouble getting through half of it, but she ate “the whole thing.” She did it her way starting at the top slice of bread, pulling off one layer at a time and working her way down to the bottom. She wasn’t unusually talkative, but she enjoyed herself. All of us had a good time.

It was after 2:00 before we left. Jesse asked if we wanted to go back to their house or to the hotel. I decided to go back to the hotel for a little break and join them at the house around 4:00. Breaks like that seem to work well for Kate, and Jesse needed to run some errands. I tend to think of these breaks as something solely for Kate, but I also think they are for me. When we are in social situations, I feel a bit of pressure to be attentive to her as well as to enjoy myself with those we are with.

After the break, we returned to Jesse’s house for about an hour. Once again, Kate took great interest in the house. She made the same circle from room to room that she had done the previous evening. For her, it was like the first time she had seen it. She told me that it looked “much better than when we lived here.” That was almost identical to something she had said about our own house a couple of months ago when she took an hour going through it the same way she did at Jesse’s.

As the sun began to set, we went to see the Christmas lights at a seniors nursing facility a twenty-minute drive from their house. They have a large piece of property circled with a light display that Jesse described as “tastefully tacky.” As a fund raiser, they open the yard to the public. I expected Kate enjoy it more than she did. She didn’t say much. It was certainly nothing like her reaction to the décor and Christmas decorations at Jesse’s. From there we drove back into town for dinner at a small Italian restaurant near Jesse’s home. It’s a great neighborhood restaurant. We’ve eaten there quite a few times over the years and enjoyed it. It was perfect for last night.

When we got back to Jesse’s, it was 8:00. I thought it was a good time for us to say good night. We went back to the hotel where I watched a portion of the Broncos/Raiders game while Kate worked on her iPad. She was in bed before 9:30 though she was still awake when I joined her at 10:00. It had been a nice day.

She got up at 3:00 to go to the bathroom. I had trouble getting back to sleep after that. The last time I looked at the clock it was 4:05. I made up that hour by sleeping until 6:45. Continue reading “Christmas Eve”