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Would you believe a fourth trip to see the Mr. Rogers’ documentary?

We had a full but very nice day yesterday. Kate was up early enough for us to make our trip to Panera, something that has been off and on lately. We were there about an hour and a half before leaving for lunch at Bluefin. From there we came back home for almost an hour before leaving for a movie.

When we were with our friends on Thursday, we learned that one of them had not seen Won’t You Be My Neighbor? She is 93 and is in excellent health and quite active. She said that one of our pastors had mentioned it in a sermon recently and wanted to see it. I called her Friday afternoon and asked if we could take her. We went yesterday afternoon. She loved it, and so did Kate who gave no sign that she remembered having seen it before. This goes down as the most times I have ever seen one movie. And I still enjoyed it.

Following the movie we went to dinner with our friend. Then we dropped her off and came back home where we relaxed a bit before retiring to the bedroom where we capped off the day watching the last of Fiddler on the Roof. I think this is my favorite musical after Les Miserables. I like each of them for different reasons. The music and then the story draws me to Les Miserables, but it’s the story and then the music that I love about Fiddler. I play them frequently for Kate. This and seeing Mr. Rogers a fourth time are good examples of my deriving pleasure from the same things that make her happy. I am grateful. We are very fortunate.

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Catching Up on the Past Few Days

Life is still going well for us though Kate has slept late or wanted to three days in a row. I was glad to see that she was up about 8:45 yesterday. It was another day for the sitter, so I was she was up for us to spend a little time together before I get away for the afternoon.

On Wednesday, I woke her about 10:45 so that we could get to lunch before the sitter arrived. She was quite groggy and didn’t want to get up. I told her I would like to have lunch with her before leaving. Then I gave her the choice to remain in bed and have Mary take her to Panera for lunch. I have done that before. She has always said she would prefer to go to lunch with me. Wednesday she said it would be fine if Mary took her. I left her to get up at her leisure. In a little bit, she got up and started getting dressed. By then, we were a little pressed for time, so we went to Panera instead of our usual place. I called Mary and asked her to meet us there. We’ve done that a few other times when we were running late. That seems to work for everyone.

I made my usual trip to the Y and then went to an appointment with one of our associate pastors at church. Since the morning is Kate’s slowest time of the day, we have not been regulars since last fall. The summer schedule is even more difficult for us. The service starts at 10:15. It just pushes Kate too much to make that.

It had been a while since I had spoken with any of the pastors. I like to keep them abreast with how things are going. We met for an hour during which I gave a rather thorough and honest account of what our lives are like. To those of you who are regular readers, it was very abbreviated overview of the things I have posted in the past.

When I got home Kate and the sitter were sitting in the family room. They had gotten along fine. Kate was ready to, so we went directly to dinner. We were back home in time for the evening news. Then we watched a portion of Fiddler on the Roof. It was a good day.

Thursday I had to wake Kate, but she got up easily in contrast to the previous day. We had a very nice and leisurely lunch with two church friends. We ate at the continuing care facility in which one of them lives. It is a very attractive place that lends itself to easy conversation. That’s something very important for folks our age. It had been more than six months since the four of us had been together, so we had plenty to talk about. Since three of us are pretty big talkers, Kate did not say much. However, she had a good time.

We came back home after lunch. I had a meeting for two hours at the house so that I didn’t have to leave Kate. Then it was time for dinner. We went to a restaurant that is a little nicer than the ones we visit most often. The ambiance, meal, and our server were all good. Then we came back home and watched a little more of Fiddler of the Roof. It was a good way to close the day.

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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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Running behind this morning.

It’s a beautiful day today. I woke up at 5:20, a good time for a summer walk of 3.4 miles, cooled off in the pool for 20 minutes, and had breakfast. You might think I had plenty of time to write another post, but somehow I haven’t done it.

This is another morning when Kate would have liked sleeping longer. I woke her at 9:45 so that we could be ready to have lunch with two church friends at noon. We are to pick up one of them at 11:30. Fortunately, Kate got up quickly. She’s a real trouper. She was ready early enough for us to make a stop by Panera for her muffin and a little relaxation before we leave here in about thirty minutes. I am always relieved when I don’t have to rush her.

We have another engagement later this afternoon, so I will be out of touch most of the day. When I have a moment, I will try to catch up on our day yesterday. Fortunately, I don’t have anything unpleasant to report.

Wishing everyone a great day.

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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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Increasing Signs of Dependence

Yesterday was a mixture of highs and lows. As I mentioned in my previous post, we were off on a good start. Kate was up early enough for us to get to Panera for her muffin. More importantly, that meant that I didn’t have to rush her to have lunch before the sitter arrived and I left for Rotary.

When Anita arrived, Kate gave me the impression that they would make a trip to Panera while I was gone. When I returned, I found that she had told Anita that she was tired and wanted to rest. She apparently rested most of the time (4 hours). As soon as Anita left, Kate told me that she had missed me and was glad I was home. She had been resting on the sofa in the family room but got up and was ready to go.

I asked if she would like to go to Barnes & Noble. She said, “Anywhere. I just want to get out of the house.” This is further evidence of what I have mentioned before. She doesn’t like to stay at home (or anywhere else) for more than an hour or two. When she doesn’t go to Panera while I am gone, she gets bored. Anita said she had encouraged her to go to Panera, but Kate said she was tired and wanted to rest.

This is not the first time this has happened, but it is not a frequent occurrence. It has made me wonder if she is beginning to be self-conscious about being with a sitter when she is at Panera. I have also noted what I thought might be signs that she is less comfortable with Anita than with Mary. One other possibility that crosses my mind is that she is just becoming so dependent on me that she feels less comfortable with the sitters than in the past.

When we got in the car to go to Barnes & Noble, she asked me where she could put her cup. This was another first. She has never been unclear about where the cup holders are in the car.

We were at Barnes & Noble for about an hour and a half before leaving for dinner. As we left, she said how nice it was that there is a place like Barnes & Noble where you can spend a little time relaxing. For a long time, I have sensed that she feels at ease at both Panera and Barnes & Noble. This was the first time I had heard her express her feelings about it.

At dinner, we talked about our family and our marriage (her favorite topic). During this time, she asked about the names of our children and grandchildren. Then she surprised me by asking, “What is the plan?” I wasn’t sure what she meant and asked if she meant for “tonight” or “tomorrow?” She said, “Whenever. I’m just going to do whatever you say.” After thinking about it, I believe she was saying saying it was too much for her to plan anything. I told her I thought we would go home and relax a while in the family room and then go to the bedroom where I would play the last portion of Les Miserables. She liked that.

At 8:00, I told her I was going to take a shower and that when I got out we could watch Les Miserables. I had been playing an audio version of the musical and left it playing when I went to shower. As I left the family room, I noticed that she had put down her iPad. She had closed her eyes and was listening to the music. She commented on how beautiful it was. When I got out of the shower, I found that she was still sitting in a chair listening to the music with her eyes closed. A few minutes later, we went to the bedroom and watched the remaining portion of the DVD. Once again, she loved it.

Then she started getting ready for bed. She went to her room to get her night clothes. When she returned, she said, “You know I could not live without you.” She said this is a way that really meant it, not that she was simply expressing how much she likes me. It is clear to me that she recognizes that she couldn’t live without my help. She told me she doesn’t want to be anyplace without me.

I am tying this back to her reaction to the sitter. I think she has become so dependent that she feels less secure when I’m not around. When I think of how much she is not able to do, I can understand her insecurity. I am glad to be here for her but sad to see her arriving at this place.

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Yesterday was a nice day.

I hope my previous report didn’t make you think our days are no longer filled with good things to report. I think we’ll always experience good things. I am sure they will be different, but we’ll have them. In the meantime, we still derive a good bit of pleasure out of each day.

Kate was slow getting up again yesterday. We skipped Panera for the second day in a row and went directly to lunch. For about the third or fourth time in a row, we had dessert. I see a habit developing. Our server is now automatically telling us what they have and any special desserts for the day. There was a time that we rarely had a dessert after a meal. Now we have dessert at five of the restaurants we visit weekly.

Yesterday afternoon we went to our oldest community theater where they were performing Beauty and the Beast. Each summer they do a play or musical primarily for children. When our grandchildren used to visit, we would take them. Now we go by ourselves. Kate loved it.

From there we went straight to dinner at a Thai restaurant that is becoming our favorite Sunday night place. I ordered a dish that we have had before. This time I selected shrimp instead of chicken. Kate couldn’t stop talking about how good the sauce was. She loves rice, and I had saturated it with the sauce. I make a point of this because she rarely comments much about the meals we have except for the desserts. Her taste buds are still working.

Saturday night, we watched the first half of the 25th Anniversary concert of Les Miserables. Last night, we watched the second half. Kate was as taken with it as she was the first time she saw it. This was the fourth time we have seen it in four weeks.

We’re off to a good start this morning. Kate was up early enough for us to get to Panera right after 10:00. She is in a cheerful mood. Sometimes she likes to tease me. She is sitting across the table from me right now. A minute ago, she said, “If you just didn’t wear glasses, you’d be perfect.” I like that better than when she says, “You’re a nice guy, but you’re not handsome.”

As I was writing that last sentence, she said, “What is your name?” I told her. Within seconds, she said, “What’s the first name again?” Then she asked a third time. I told her, smiled, and said, “I love you.” She said, “I love you too.”

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The changes are gradual, but noticeable.

Yesterday I checked on Kate at 10:30. She had gotten up but had not yet showered or dressed. Not long ago, we would have been at Panera. It was after 11:30 before she was ready to leave, so we went straight to lunch. This has occurred with increasing frequency over the past few weeks. A number of people at Panera have asked where we’ve been. I’ve told them we’re sleeping a little later lately.

It was late April or the first of May that her sleeping pattern began to change. At that time, I wondered if this could be a sign of some overall change that was taking place. I also considered the fact that she was taking Trazadone. It is often given as an aid to sleep. After consultation with her doctor, I took her off of it. On the whole, I believe that helped a little. I do believe she is sleeping fewer hours each day. Before taking her off, she usually slept 12 to 14 hours. Since then, the time she wakes up has been more erratic. I would say that she sleeps 11 to 13 hours but occasionally as long as 15 hours. For a long time, I haven’t made any commitments before noon. Now I feel more comfortable if we don’t have any before 1:30. For example, her doctor works out of two offices. One is a good bit closer to us. I have changed her appointments to the farther distance so that she can get a 2:00 appointment.

There are also some days when she sleeps late and then naps again in the afternoon. That happened recently on a day when we had a sitter. She had slept until almost noon. The sitter said she slept another two hours while I was gone. When we returned from lunch yesterday, she went directly to bed and rested almost two hours.

I have been especially sensitive to her sleep routine because I lost a friend who had dementia last year. He was progressing about the same as Kate. After we last saw him, he started sleeping more and died a few weeks later. That may be an unusual occurrence, but I took notice of it.

Kate’s changes are more than just her sleep. As I have reported in other posts, she often picks up items of clothing to take with her when we go out. They are never things that she might need. In most cases, she hasn’t said anything to me about why she is taking them. I don’t ask. I learned a long time ago that she can’t explain why she does things. As we were getting ready to leave for lunch, she said, “I have an extra pair of socks (in her hand). Should I take them?” I said, “I don’t think you’ll need them. Why don’t you leave them here.” Sometime in the past week or ten days, she asked the same thing about some other item. I gave her the same response that time. Otherwise, I just let her bring whatever she has to the car. Normally that is where it stays until I bring it back in.

She has a particular attraction to socks. She often gets out two to four pair of socks to wear even if she doesn’t take them with her. I find them in various places around the house. She has also been exploring closets and drawers that she doesn’t normal check. This morning she got into a closet where she keeps her dressy attire. I keep several tops in there so that she has something appropriate when we are going to a special event. She picked out a very attractive top I had bought a couple of months ago. I didn’t say anything. She looked great, and it’s a top that is multi-colored and won’t show stains. While she was sleeping, I noticed that the bottom drawer of my bedside table was open. Then I saw that she had taken out a small cassette recorder and a charging cable and left it on the bed.

More significant is her change in dependence on me. She is asking for and accepting my help more frequently. It wasn’t long ago that she was regularly declining my hand when going up or down stairs or curbs. Now she often accepts and frequently asks. Its kind of cute the way she asks. As I step off a curb, she’ll simply say, “Hand.” She doesn’t say it sternly. It is a gentle request for my help. She does something similar when dressing. It’s almost like a little chirp. She says, “Help.”

I have been well aware that people with dementia need help dressing, but I never really thought about it much or understood what the problem was. Now I am learning. Getting pants and tops on so that they aren’t backwards or inside out is more challenging than I realized. There is also the problem of the sequence or order in which you get dressed. On occasion when I observe her dressing, I am struck by how much concentration is required for her to figure out what she should do next. Sometimes she just has to call, “Help.” The interesting thing is that this has occurred so gradually that she doesn’t seem to express any frustration or irritation that she has to ask for my help. She is very comfortable asking. She doesn’t do it all the time. She is still picking out her own clothes most of the time.

Of course, one of the most noticeable changes are in her memory. The fact that she asks my name more often is among them. When taken together, all of these things make it clear that our lives are becoming very different. Change brings with it a lot of feelings. At Broadway Night at Casa Bella on Thursday, they sang a song I had never heard, “Happy/Sad.” That seems to be where I am right now. I’m happy for all the good times we have had and will continue to have, but I’m also sad as I contemplate the changes taking place.

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Another Episode of Anxiety

We had a very nice evening last night. After dinner, Kate spent an hour or more looking through two of her photobooks. As in the past, it was just like seeing them for the first time. We followed that by watching the third of three DVDs of her family’s home movies and videos. This video had just as much impact as the first two. After that, she dressed for bed and then went to the bathroom. When she returned, I noticed that she seemed to be breathing heavily. Then she began to make audible sounds as she breathed. It was like, “Oh . . . Oh . . . Oh.”

We got into bed, and she said tearfully, “I’m sorry I didn’t get everything done.” I said with a soft, comforting voice, “That’s all right. You didn’t forget anything. There wasn’t anything for you to do.” She didn’t calm down immediately. I asked if she could take some slow, deep breaths and relax. That is something she does when she has an attack of acid reflux. I held her for a few minutes and began to talk about her family that we had just seen on the DVDs. That led to talking about our marriage and the good times we have had. In a short time, she relaxed.

I wish I knew what brings on these attacks. This is the third one in the past two or three weeks. Each time it seems to occur without my being able to connect it with anything specific. The fact that she apologized for not doing something suggests she imagined my asking her to do something that she didn’t do. I think I’ve mentioned before that she really wants to please me. That has caused me to try not to say anything when she forgets to get ready to go somewhere or wear clothes I have picked out for her. It makes her feel bad.

Each time something like this happens, I wonder what the future holds. That is truer now than a few months ago.

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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.