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Two Events That Brightened Our Day

Yesterday our pastor had invited Kate and me to lunch at noon. Normally, that would lead me to be concerned about Kate’s waking up in time to get ready. That was no problem since we had two of the work crew who installed our new windows  finishing a couple of things. They were here at 9:15. I let her know that one of the workers was in the house and suggested she take her shower and dress in our bedroom and bath. She got up easily which gave us time for almost an hour at Panera before meeting our pastor.

We had a grand time at lunch. Our pastor and his wife had just returned from a trip to Rwanda where their daughter is doing research related to post traumatic stress disorder. We enjoyed hearing about her work as well as their hike through a gorilla preserve. We also shared some of our favorite travel experiences.

After lunch, we went directly to our car dealer’s for a routine service appointment. They have a nice waiting area where we stayed while they worked on our car. I think Kate thought of it as another alternative to Panera or Barnes & Noble. I know at one point she said something about its being a very nice place.

We relaxed at home for an hour before going to Casa Bella for jazz night. The music was unusually good, and we had a guest from Houston at our table. She manages a project that her IT company has with the state of Tennessee. On a previous visit to Knoxville, she had eaten at Casa Bella and learned about their music nights. Normally, she would have flown back to Houston in the afternoon but stayed over a night for jazz night. She is an interesting person, and Kate always enjoys meeting someone with a Texas connection. She sat beside Kate. When she asked her where she was from she couldn’t immediately remember the city. I jumped in and said, Fort Worth. After talking with her a few minutes, Kate asked her where she was from although she had just finished telling us that she was from Houston. No one acted as though they noticed anything inappropriate. I suspect the couple with whom we always sit noticed since they are aware of Kate’s Alzheimer’s.

When we got in the car for home, Kate said, “It’s been a nice trip so far.” She often thinks she is in Fort Worth. I suppose that is what she was thinking.

At home, I stopped in the kitchen for a moment as Kate walked into the family room. She called to me. I went to her, and she said, “I’ll follow you.” She obviously didn’t know how to get to our bedroom. It’s possible that she didn’t even recognize that we were home.

Even with this confusion, we had had a nice day. I am very glad she can still enjoy so many things.

This morning she surprised me when she was ready to leave for Panera shortly after 10:00. She was holding a pair of socks in one hand. I said, “I see you have some extra socks.” She said, “I always need extra socks.” I needed to do a few things before we left and asked if she could work on her iPad while I finished up. After she was seated, she said, “Could you hold these” and handed the socks to me. I said, “Yes” and took them from her. We had  time to get to Panera where we saw several of our friends from a nearby Catholic church who are regulars. We hadn’t seen them in a couple weeks and had been wondering about us. I told them that “we” had been sleeping a little later recently.

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Memory Loss

Kate is moving quickly to a complete loss of names. At lunch and on the way home today, she quizzed me about my name, her parents’ names, and our children’s names. It isn’t as thought this is the first time, but she seems to be struggling even more now. I don’t mean that she expressed any outward frustration over her obvious memory loss. She didn’t. It was the whole nature of the conversation that made her efforts seem like a quiet struggle.

She began by asking my name. When I told her, she asked me to repeat it again. Then she tried without success. At one point, I said, “Could I ask your name?” She had to think a minute before answering, but she got it.

Then I asked if there were any other names she would like me to help her with, “like our children’s names.” She said, “We have children?” I told her we did and proceeded to tell her their names and where they live and about their spouses and children. Her eyes began to glaze over. I said, “I think I may be covering too much.” She nodded agreement.

When we got up to leave the restaurant, she said, “What is his name?” I didn’t know who she was talking about and asked her. She said, “The one you were talking to.” It had been about ten minutes since I had introduced her to someone I knew from UT and the symphony. She was frustrated and said, “You could help me if you just gave a straight answer instead of going off on these other things.” I backed off, and nothing more was said. This is not the first time I have asked her to explain something she has said. I don’t think she has ever explained. She just drops it. I think it is too hard for her to remember what she was trying to say.

On the way home, she told me that she wanted to take a nap when we got home. Sometimes she says this but forgets. Today she got in bed after brushing her teeth. She was in bed when the sitter arrived.

She continues to pick up things, mostly clothes, and take them in the car with us. Today she brought a wool turtle neck sweater and a pair of brown shoes. Getting out of the car a the restaurant, she asked about taking the sweater inside. I told her I didn’t think she would need it. She left it. When we got home, she asked if she should take the sweater inside. I told her that would be a good idea and suggested taking in her brown shoes as well. I brought in two decorative pillows from our bed that she had brought with her the other day.

This morning she had rummaged through one of the drawers in my bedside table. I didn’t see anything he had taken out, but I have recently found several things she has taken out of these drawers. My suspicion is thatn she  is confusing my table with the one she has on her side of the bed. That reminds me that the other night she got in bed on my side without any awareness she had done so.

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Back to Normal

After the pain of Friday night, we were back to our new normal routine yesterday. I say new normal since Kate is sleeping later somewhat more consistently now. It appears that the new pattern is to sleep late a couple of days in a row. Then she gets up at a normal time the next day. If that pattern holds, she will probably sleep late again this morning. I woke her around noon yesterday. We went directly to lunch, arriving about 1:30.

We came back home where we relaxed over an hour. I got out a three-ring binder with photos of our children and grandchildren as well as Kate’s brother and his wife. I had also included several pages of information about us. It included basic family information like Kate’s parents and grandparents, her brother and his wife, and our children and grandchildren. There is also a section to which I will continue to add information. Right now it includes our dating, engagement, wedding, and honeymoon. First, I’m going to revise what I have. I’m going to format the information as an outline rather than a narrative. That will be easier for her to comprehend. I also don’t want to overload her. I think having little snippets of information is better than trying to tell a more complete story. Kate was interested in what I had put together. That made me happy. I wasn’t sure what to expect.

When we finished with Kate’s Memory Book, I picked up her Big Sister Album that Ken made and gave to her in the spring. It’s 140 pages with multiple photos on each page. She went through the entire album. For Kate, it was just like seeing it for the first time. I am struck by the fact that there are a few pictures that she always singles out as especially good. She loves the picture of Ken and her on the cover. It was taken when they were 6 and 3. I think the album is especially important for her right now when she is beginning to lose so many of her memories.

When we finished, we had about an hour and a half before dinner. We went to Barnes & Noble. From there we went to dinner and back home. We relaxed a while in the family room before adjourning to our bedroom where we watched a portion of Sound of Music. She was feeling tired and got to bed at 9:30. I got in bed shortly thereafter.

Neither one of us said anything about the previous night. We were back to where we were. This is a good example of the pattern of changes that occur over time. There is never an abrupt end of one thing and a beginning of another. That is the way it has been with names. She sometimes forgets names but remembers them at other times. As time passes, the forgetting becomes more common. Most of the time, she no longer remembers the names of our children, but sometimes she does. She is forgetting my name more than in the past, I see that it won’t be long until my name and hers will be lost.

This gradual process helps me adapt. I am bothered by the first signs of new things that mark the progression of her disease. Then I begin to adapt. Then something else happens. I try not spend a lot of time worrying about it, but I do wonder what our lives will be like 3-6 months from now. I hope that we will be able to make a trip to Texas for Thanksgiving with Kevin and his family as well as to Virginia to be with Jesse and her family for Christmas. It is still too early for me to know if this will work out.

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Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.

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Latest Doctor’s Appointment and Opera Night

Kate’s getting up earlier helped to make the day go smoothly yesterday. We spent about an hour at Panera before going to lunch. Then we had just enough time to drop by the house to brush teeth before going a routine doctor’s appointment for Kate. This was an uneventful visit. Dr. Reynolds asked Kate how she was doing and if there were any special things she wanted to report. She didn’t have anything. That, of course, is not surprising. Even if she did, she probably would have been unable to remember it. I did mention that she had been sleeping later in the day but didn’t think we needed to do anything special to counteract that. I told him we had continued to keep up an active schedule. He asked that I drop the Ibuprophen I had been giving her. He doubted that the low dose I was giving her (one tablet in the morning and one at night) made any difference at all. I had also cut back on her acid reflux medication. He said it is best to continue as it was before.

From the doctor’s office we stopped by Barnes & Noble for an hour and a half. Then we came home and changed clothes before going to opera night at Casa Bella. I got Kate’s clothes for her. After I had changed, I went to check on her. She was wearing a pair of black pants I had given her but had not put on the top I picked out. I found it in the bathroom and brought it to her. She put it on. As she did so, I noticed that she had put the black pants on over the tan ones she had worn all day. I decided not to say anything. A few minutes later, I saw her going through a drawer in her bedside table. She took out a small plastic container that had several ball point pens. She also found a glove and put it in the tray as well. She took it with her to the car. We were off to Casa Bella.

As Kate started to get out of the car at the restaurant, I noticed that she was about to bring the pants she had brought to the car earlier in the day. I told her I thought she could just leave them in the car. She accepted that without a question. It has been a good while since she has expressed any reservation about following any suggestion I make. I feel this is further evidence of increasing sense of dependence on me to know what it best.

The evening went well. A new couple sat with us and the couple we always sit with. We had a good time getting acquainted. At one point, the wife asked Kate about her work. She said she was retired and had been a teacher. The husband asked her where she taught. She was stumped and said, “Around Tennessee.” I interjected and gave the names of the schools. The wife asked her what she taught. She was unsure what to say. Once again, I spoke up for her and said that she had been an English teacher and school librarian. The rest of the evening went smoothly. It had been another nice day.

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A Day of Names

Kate frequently asks me to tell her my name and the names of our children and grandchildren. Yesterday was different in that it occurred so much. I suspect if we hadn’t had a sitter in the afternoon she would have asked me more times. As we left for Panera yesterday, she said, “What is your name?” She asked again at Panera. She also asked, “Where are we?” That is something else that occurred more often than usual. I often answer, “Knoxville where we have lived for 47 years.” She always expresses surprise about the number of years. This happened several times yesterday. A few times were so close together that even I was surprised she had no recollection of how long we had lived here. She also asked me where she was born.

When we got into bed last night, she said, “Do we have children?” I said, “Yes.” She said, “Two.” She asked me to tell her their names. It was said as if she were testing me and not seeking information for herself. It was clear as we talked that she really couldn’t remember. In a few moments, she asked me to tell her the names of our children again. Then again in another few minutes. When I tell her, she almost always follows that by saying how proud we are of them.

She asks the names of our children far more than any other names. As I have noted before, I take that as a measure of a mother’s love. She loves them dearly and is trying to hold on to their names as Alzheimer’s ravages her brain.

Perhaps because she has slept late recently, she has been quite talkative once we got into bed the past two nights. Her conversation (as it does during the day) focuses on the things she can remember – her mother and father, our marriage, and our children. She finds comfort in talking about these things. She talks mostly about our marriage, about our being well-matched, about our being meant for each other, that she would marry me again if she could, and that we have been so fortunate. I share her feelings. It makes me think of my parents and her parents. It was the same with them.

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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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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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More Trouble With My Name

Kate still remembers my name, but the tie between my name and me is getting noticeable weaker. We are spending a little more time at home today since we have a crew of workers installing new windows in the house. A few minutes ago as we were sitting across from each other in the family room, she said, “What is your name?” I gave her my first name. Then she asked for my full name. After I had done that, she asked me to repeat it again. She tried to repeat it and then stopped. She asked me to repeat it. Then she repeated it back to me. To me that is another sign that she is working hard to hold on to all the memories that are slowly fading away. I am so glad she doesn’t seem to be disturbed at all. That would bother me more than the sadness of watching her slip away from me.

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Bedtime Conversation

Kate got into bed to work a few more puzzles before going to sleep.

KATE: “I like it here.”

RICHARD: “I do too.”

Five Minutes Later

KATE: “What’s the name of this hotel?”

RICHARD: “This is our house.”

KATE: “You could have fooled me.”

Another Five Minutes Later

KATE: “I just like your being here even if we aren’t talking.”

RICHARD: “Me, too. It would be lonely without you.”

KATE: “Do you know my name?”

RICHARD: “Yes. Do you?”

KATE: “Kate. What is your name?”

RICHARD: “Richard.”

KATE: “Oh, I knew that. I just couldn’t think of it.”