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Anxiety Attack in the Middle of the Night

About 1:00 this morning, I heard Kate whimpering. She put her arm around me and said, “I need you.” I didn’t ask what was wrong. Although milder than what I have observed before, I recognize the symptoms now. She said, “Who are my parents?” That led to a conversation that continued for about an hour. I told her about her parents, their names, where they were from, how a Michigan girl and a Texas boy met and married. She also asked about our children. I told her a similar story about them and their children. When I finished, sometimes before I finished, she asked again. She didn’t ask, but I also told her who she and I are and about our meeting and our courtship and marriage. The more I told her, the calmer she got. At one point when I reminded her that our courtship had revolved around my work at a funeral home, she laughed. It was also clear that some of what I said jogged her memory. Finally, we both went back to sleep.

I thought that both of us might sleep a little later this morning, but it didn’t happen. I was up at 5:50. That wasn’t much of a surprise. The surprise was that Kate got up early enough to be ready for Panera about 8:00. She is doing fine. I am sure she doesn’t remember her anxiety during the night. That’s the only good thing about her memory loss.

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Another First

When I turn off the main road into the shopping center where Panera is located, Kate often says something like, “Surprise. Surprise.” or “I know where you’re going.” Not so this morning. Instead, she said, “Where are we going?” Thinking that she would soon catch on, I said, “I think I’ll let you guess.” As we got closer, I asked, “Do recognize anything now?” She didn’t answer. When I pulled into a parking space, she said, “Panera.” I said, “You got it.” She said, “Well, I saw the sign.” This is a little thing, but it’s another sign that the connections with familiar places are weakening.

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Kate’s memory is fading quickly.

There is no way that I can measure the speed at which Kate’s recent decline in memory has occurred. I only know that she has changed more in the past two months than I can recall for any period since her diagnosis. It is no wonder that she has periodic attacks of anxiety. It’s harder to understand why she hasn’t had more.

Her sense of direction has always been poor, but her difficulty knowing where to go in the house has surprised me. I hadn’t really thought about this before. I guess I assumed she would be on autopilot in the house forever. To some extent, she still is. Yesterday, for example, she said, “Where is the bathroom?” I told her I would show her and walked her toward our bedroom. As we were leaving the family room, she turned and went into the guest bathroom. That is the one she has used most often. She must have recognized where she was the moment she walked out of the family room.

Earlier today at Panera, I asked someone I know at a nearby table to watch her a minute while I went next door to make an appointment for Kate to get her nails done. When I came back, she said, “What’s my name?” I gave her the full name, and she asked me to repeat it.

She got along well yesterday. I don’t mean that her memory was any better. I mean that she isn’t showing any sign of unusual worry or concern over her memory. I sat in the waiting area of the nail salon while she is finishing up. She  handled herself well with the person taking care of her. When I left her, there was a brief moment when she seemed to be concerned that I was leaving her. I told her I would be next door at Panera. On the whole, it is still amazing how well she gets along in brief social encounters.

Last night, we went to Casa Bella for Broadway night. We had another good evening, but it was a very challenging one for Kate. We sat at a larger table, and the entire crowd was noisy. There was absolutely no way that she could keep up with the conversation. At first, she tried. That required her asking others or me to repeat things just said. It didn’t take long before she just bowed out of the conversation.

When we got home, she walked to our bedroom without any problem. In a few minutes, I went to the bedroom. No lights were on. She was standing in the middle of the bedroom. She asked where she should go. I told her she could stay right there in the bedroom and that I would get a night gown for her. She went through the usual challenge of getting her clothes off and putting on her gown. Sequencing is a problem for those with dementia. Getting dressed or undressed involves sequencing. Now that I’m watching and helping her dress, I am getting a better understanding of this issue. I am beginning to help by telling her what to do at each step (take off your shoes, your socks, etc.).

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A Few Moments Ago at Panera

KATE: What’s your name?
RICHARD: Richard Creighton.
KATE: Your full name.
RICHARD: Richard Lee Creighton.
KATE: Richard . . . (Trying to think of the middle name)
RICHARD: It begins with an ‘’L.”
KATE: (No response. Still thinking.)
RICHARD: Lee.
KATE: Richard Lee Creighton. That’s not so hard. (Puzzled look on her face.)
RICHARD: Not too hard.
KATE: What’s my name?

I can’t imagine what it must be like to work so hard day in and day out to know something as important to her as her husband’s name as well as her own. Fortunately, this is one of the times that she doesn’t seem very frustrated or disturbed about not remembering though her puzzled look suggests a bit of concern.

Just as I was about to upload this to my blog, she asked again.

KATE: What’s your name?”
RICHARD: Richard Lee Creighton
KATE: I knew that. (But meaning, “I just couldn’t call it at that moment.)

One of the clues that convey the importance of my name to her is that all this time she has been diligently (it appears) working on her jigsaw puzzles. Then out of the blue, she looks across the table at me and says, “What’s your name?” It is obviously on her mind a lot. She wants to get it right.

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The Rest of the Day

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

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

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

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

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

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

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More Surprises This Morning

I got home from my morning walk at 8:00 and went to the pool to meditate. When I came into the house, I noticed that Kate had gotten up. I went back to our bathroom where I had everything prepared for her shower but found that she had not used our shower. I decided to let her get ready at her own pace and went back to the kitchen. Just before 8:45, I went back to check on her. She was walking into the family room dressed for the day. I was quite surprised for two reasons. First, She rarely gets up before 9:00 and recently been sleeping until after 10:00, often after 10:30. Second, it usually take her an hour and a half to get ready. I didn’t see any signs that she had taken a shower. That, too, is very unusual.

As she walked toward me, she held up a pair of socks and said, “I have extra socks.” We both walked to the kitchen where I had put her morning meds. Then she said, “Underwear.” When she wants or needs something she often just uses a single word, so I asked if she needed underwear. She did. That told me she had forgotten where she keeps her underwear. I got it and brought it back to her.

When she finished her meds, I was in the bedroom and heard her call my name. Once again, she was able to remember my name when she needed something. When I got to the kitchen, she held up the pair of socks she was carrying a few minutes earlier and said, “Look what I found.” I asked what she was going to do with them. She said she didn’t know. I asked if she would like me to put them in her sock drawer. She said she did, and I took them back to her room.

On the way to Panera, I said something and could tell that she preferred that I not talk. I said, “I’m not going to say another word.” She said, “We’ll see. You can’t help yourself.” When I didn’t say anything else, she said, “What do you know?” She obviously remembers that I am a talker.

When we turned into the parking lot at Panera, she said, “Surprise, surprise.” It was clear that she recognized where we were. Just before we got out of the car, she teased me about something. I expressed surprise. She smiled and said, “I guess I’ve been married to you too long.” Aha, she remembered that we are married.

We had arrived before 9:00. While we were seated at our table, she said, “Panera.” Then she beamed. She was proud to have remembered. Since she hadn’t gotten to bed any earlier last night, I figured that we might not stay there too long. About 10:00, she said she wanted to go. Then she looked at her iPad and asked, “Is this theirs or ours?” I told her it was hers. We got our things together and came home where she worked on her iPad a while and then rested about thirty minutes. We left for lunch a short time after that.

On the way to lunch, she asked me at least three times where we were. When we were ready to return home, she wanted to use the ladies room. Even though it is very close to where we sit, I have learned that it is best to walk with her. While she was in the restroom, I chatted with our server. I told her that Kate had been making a lot of changes in the past few weeks. She was surprised. She said, she couldn’t tell any difference at all. When Kate came out of the restroom, she had no idea where to look for me. Fortunately, I stayed within ten feet of the restrooms. I saw her puzzled look and walked over to her, and we left. On the way home, she again asked where we were. Right now her primary questions seem to be “What is your name?” and “Where are we?” Those must be the two most important things she needs to know. I can understand that. What is hard for me to understand is what it must be like not to know the name of the person with whom I have the closest relationship or the name of the city I am in.

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There are always little surprises.

About an hour before we left for dinner Thursday night, Kate came into the family room and brought with her two pair of socks and a tube of toothpaste with a missing top. She pointed to the photo book her brother made for her and asked, “Should I take this?” I told her I didn’t think she would need it at Casa Bella. She said, “Okay” and sat down in a chair with her iPad.

As we were about to leave for dinner, she picked up the two pair of socks she had earlier placed on the table beside her. She said, “I want to take these.” I said, “Do you think you’ll need them?” She said, “Not right now, but I really want these black socks.” Then she added, “These white ones too.” I got up to go, and she said, “I think I had better go to the bathroom now.” She had the socks in her hand and said, “I want to keep these.” I put out my hand and said, “I could put them in your sock drawer.” She gave me a big smile and handed them to me. The tube of toothpaste remained on a table.

We had a very nice time at Casa Bella. This was not one of their music nights, so we ate in the smaller front section of the restaurant. Until we started attending their music nights the first, second, and third Thursdays of the month, we always ate in this section. It felt a little like coming home. Over the years, this is where we had come to celebrate special moments as well as to console ourselves when we needed to be comforted. It is very quiet and offered just the right setting for reminiscing. At one point in our conversation, Kate asked, “What is the name of this place?” I shouldn’t have been surprised that she didn’t remember the restaurant’s name, but I was. We’ve been coming here almost 47 years. We are here at least three nights a month. We know the family that owns it. As Kate’s brother, Ken, reminded me yesterday morning, she doesn’t usually remember my name and we have been married 55 years and had our first date a year and a half before then. I shouldn’t expect her to remember the name of the restaurant.

Both the strange behavior and the increasing loss of memory continue to mix with many aspects of her behavior that are perfectly normal. I suppose that is what throws me. Some things are as they always were while others are new. We can’t have things the way they were and are adapting to a new world.

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Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.

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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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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.