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Another Day Without Panera (And we survived. )

As I reported in my previous post, Kate was slow to get going yesterday. We skipped Panera and went straight to lunch. We didn’t arrive at the restaurant until 1:50. It was after 3:30 before we got back home. We spent almost an hour relaxing in the family room when she said she want to rest a while. Shortly after that, our son, Kevin, called. I went in the bedroom to see if she would like to take the call, but she wanted to rest. That’s just one more change that is taking place. In the past, she would have jumped on the phone right away. Kevin and I must have talked 45 minutes or so. She continued resting another thirty minutes.

When she was up, it was already an hour past our typical time for dinner. I didn’t think that was a problem since we had eaten lunch so late. By the time we got home, it was 8:15. I decided not to watch another musical. We just relaxed a short time. She surprised me by putting away her iPad and going to bed right after 9:00. I had been afraid she would not be able to go to sleep after sleeping so late and then taking a late afternoon nap. I was wrong.

I wasn’t sure what to expect this morning. Not surprisingly, she was up early and was ready for Panera at 8:45. Most of the time she isn’t even up by that time. So here we are. That makes me happy. We should have plenty of time together before the sitter comes. We should not have to rush our lunch. I suspect, however, that she is likely to get tired and want to go home in another hour. That would be close to the time I would get her lunch. We’ll see what happens.

Upon arrival, I noted another change that is occurring. Typically, I set up her iPad at our table and then go to the counter to order and pay for her muffin and our drinks. She goes directly to the drink dispensers and returns to the table. I wait near the table until she has her drink before going to the counter. Otherwise, she doesn’t know which table is ours. Today she approached me and said, “Where do you get ice?” This is something she has been doing for years. Once again, I shouldn’t have been surprised. Recently, I had noticed some confusion when she was at the dispenser. I thought it was just trying to decide what drink to get. Now I think it must be all the all options she has. Like most dispensers, the ice is right among the various drinks. It can be confusing, especially to someone with Alzheimer’s. On one or two occasions, she has given her cup to me to get ice and her drink. This may become our new normal.

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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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My Connections with Others Living with Alzheimer’s

During the first three or four years, I didn’t attempt to make contact with anyone else who was a caregiver to a loved one with dementia. I was influenced by the fact that Kate didn’t want anyone to know about her diagnosis. At that point, I had been involved directly or indirectly with caregiving for our parents for 22 years. My mother had dementia, and Kate’s mother had vascular dementia. Because of this experience, I didn’t feel an immediate need for any special support.

As time passed, I felt a need to connect with others going through the same or similar experiences. I did a little reading. Jan’s Story was the first book about Alzheimer’s that I read. I think the second was Still Alice. It wasn’t long after the diagnosis that I visited the caregiver forums on the Alzheimer’s Association website. I was immediately discouraged by what I was reading. I found the personal experiences too depressing. These stories were far different from our own. Later on, I joined one of the Memory People groups on Facebook. All of these are valuable sources of support and advice. They were just too depressing for me. I still check in once in a while, but I am not a regular visitor to these sites.

Early in 2014, I told our children about Kate. Later in the year, I told a few other close friends. I felt as though the word would begin to circulate. That made me more comfortable talking with other people in my shoes. One was Kate’s cousin in Texas whose husband had passed away two or three years before. There were also three other men who lived in Knoxville and caring for their wives. I connected with them and maintained periodic contact until their wives passed away. One of those has kept up with me since then. I think we will continue to communicate once in a while, but he has recently remarried. I believe he should be looking forward and not reliving what I know for him are painful memories.

I have one other Rotary friend that I communicate with mostly by email. He and his wife don’t get out as much, and she is reluctant to have a caregiver. That means we don’t get together face to face.

I also know a member of our church who is caring for his wife. We have spoken on the phone several times. I check in on him from time to time, but I have gotten the impression that he isn’t seeking someone with whom he can establish an ongoing relationship.

Since launching this blog, I have had increased communication with a friend, Rebecca Wilson, from West Palm Beach. We knew each other at church when we were in junior and senior high school and have kept up over the years. Kate and I used to play bridge with her and her husband during graduate school. I don’t think we have seen each other since then, but we have kept up through Christmas cards and email. Her husband has Parkinson’s. She checks this blog periodically and sometimes offers her comments and observations.

A week ago, she told me about another friend of hers whose wife has Alzheimer’s. She told me their situation sounds similar to ours and suggested to each of us that we get in communication. He lives in Florida, so we wouldn’t actually get together, but we could talk on the phone and communicate via email. In fact, he called me Friday night. He and his wife are on a short vacation to the North Carolina mountains and were leaving for Florida yesterday. We didn’t talk long, but it sounded like our experiences are somewhat similar. I believe she was diagnosed in 2012, Kate in 2011. Like Kate, his wife has had no issues with agitation or combativeness, and they are still enjoying life. I look forward to communicating more with him in the days ahead.

Even though they are not large in number, I feel a good bit of support from these connections. I also believe I am likely to participate in support groups when Kate is at a later stage of her disease. That is when I am really like to need more contact. Right now, I think my needs are met.

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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.”