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More Confusion in the Past Two Days

Changes in the Past Two Days

Two things happened night before last that are indicative of the kind of changes Kate is making. After returning home from dinner, she sat down with her iPad. It wasn’t long before she asked for help. It turned out that she thought the puzzles were photos and was trying to figure out how she could label them. At first, I didn’t understand that and tried to show her how to put the pieces together. She responded by asking me to put the pieces in place. I worked two puzzles and asked if she didn’t want to work them herself. She said something that made me realize that she didn’t understand they were puzzles. Then she said she was tired and thought she would put the iPad aside and work on it “tomorrow.” I told her I would put on some music she might enjoy. She said she would to get ready for bed.

After she was in bed a few minutes, I noticed that she was shaking. I asked if she were all right. She said, “I think I made a big mistake and hope I didn’t mess things up.” I asked her to tell me about it. She didn’t know what she had done. She just thought she had done something she shouldn’t have. I told her I was going to take my shower. She said, “When you finish, will you come to bed.” I told her I would even though that would be a little early for me. After my shower, she was still worried about having done something wrong. All I could do was hold her and try to assure her that everything would be all right. I didn’t convince her, but she gradually calmed down and went to sleep.

Over the course of her illness, she has had periodic episodes that involved her thinking I had told her something that I hadn’t or that someone was coming to visit that wasn’t. I can’t help wondering if she is going to experience more of this kind of thing in the days ahead. I hope not. In the past, what she has imagined has bothered her. I hope we can avoid that.

During dinner last night and afterward, Kate was especially confused. She always asks the name of the restaurant as well as the hostess and our server. She just asked more times than usual and also appeared to be struggling more to get it right. She works so hard to remember names and places.

We had the following conversation on the way home.

KATE:            “What are we?”

RICHARD:    “Do you mean the nature of our relationship?”

KATE:            “Yes.”

RICHARD:    “We are married. Are you disappointed?”

KATE:            “No, I’m glad. What is your name?”

RICHARD:    “Richard Lee Creighton.”

KATE:            “What is my name?”

We are working our way into a regular routine when we return home. She said, “I’ll follow you.” She was impressed with the family room. As in the past, it was as though she had never been here before. Then something new occurred. She saw her iPad on a chair and asked, “What is this?” I said, “That’s your iPad” She gave me a look that I interpreted as, “What’s an iPad?” I explained it was something that she could use to work jigsaw puzzles. I wish you could have seen the excitement on her face. She said, “Oh, I’d like to do that right now.” I was shocked that she didn’t know what her iPad is, but it obviously caught her attention. As with people whose names she can’t remember, she didn’t recognize what it was, but she knew it was something familiar.

She mentioned wanting to brush her teeth. I told her to follow me to our bathroom. When she walked in our bedroom, she said, “Oh, this is nice.” Once again, she seemed not to recognize having ever been here before. After she went to bed, she said, “It’s been nice to stay here.” Apparently, she thought we were out of town.

When I got into bed, I moved close to her and put my arm around her. She accepted that as naturally as ever. Then she said something that made me think she didn’t recognize that I am her husband. I said, “You remember that I am your husband, don’t you?” She couldn’t believe it. Then she said, “Could we talk about this tomorrow?”  It seems like she is making noticeable changes on almost a daily basis. I don’t like the direction in which we are going.

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Shopping

Until yesterday, it had been at least two years, maybe three, since I had taken Kate shopping. I find it easier to shop online for everything she needs. With our recent cold snap, she lacks winter clothes that fit. I was going to go online, but we are leaving for Texas next week and wanted to make sure she had something new for the trip. Thus, I took her shopping. I was looking for two types of things. One was tops that were a little heavier than what she normally wears. The other was a tunic-length cardigan sweater.

I had stopped taking her with me years ago when I found that it was confusing for her. She found it a challenge to make a decision as to what she liked and what she needed most or would wear. We often bought things she didn’t wear. I initially gravitated to shopping in her favorite stores without her. I stopped that because the clothes were generally expensive, and Kate would often wear them when working in the yard.

With this in mind, I was interested in how she might feel about going shopping again. To start with, she didn’t express any special interest in going. When I told her I wanted to take her to look for clothes, she simply went along with that the way she does with everything else I do. I shouldn’t have been surprised at her lack of enthusiasm. Since I started shopping for her, she hasn’t mentioned a need or desire to shop for anything. In fact, it doesn’t appear that she has ever noticed that I shop for her. When I give her something new to wear, I don’t mention that it is new or that I bought it. Yesterday, I told her I thought she could use a couple of tops like the one she was wearing, she simply accepted that without comment.

We went to a local department store that has a good selection with reasonable prices. Once we were in the shop, we both found a variety of things that were appropriate. The key was identifying something that fit, and, equally important, that Kate liked. One of the sales people directed us to two tables of tops and several racks of cardigans. We were able to locate tops that met our criteria. Kate was quick to identify the ones that she liked and those she didn’t. She tired very quickly and was ready to leave. I bought two tops and left the cardigans for another day when Kate is with the sitter. I didn’t even ask her to try them on. If they don’t fit, I’ll take them back. Handling her clothes continues to be one of the most troublesome chore for me.

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Another Unusual Start

As I was about to get up this morning, Kate was slightly shaking and whimpering. I asked what was the matter. She didn’t say a word. It seemed like she was trying to hide whatever was bothering her. I stayed in bed and held her for a while. She calmed a bit, and I told her I was going to get up and that I would be in the kitchen if she needed me. I told her I loved her and wanted to help if I could. She said she loved me. I felt good because she didn’t seem to be experiencing the same kind of anxiety I have seen on several other occasions. When I first heard her, I immediately thought of her being afraid because she didn’t know where she was or who she is. If she was experiencing the same thing as before, it was much milder.

I could hear her whimpering again after I had dressed. I sat down on the bed beside her and asked what I could do to help her. She said she wanted to go to the bathroom. I helped her out of bed. She said she would be fine, but I asked if I could show her the bathroom. She nodded. I took her hand and walked her to the bathroom. When she came out of the bathroom, she asked, “What should I do now?” I told her it was still early and that she should probably get back in bed. She liked that. She was very groggy and confused. I helped her into bed and pulled the covers over her and reminded her I would be in the kitchen if she needed me.

About 10:00, I checked on her and found that she had gotten out of bed. I didn’t see her in our bathroom or the one for the bedroom next to ours. I found her under the covers in the bedroom where she keeps her clothes. She was awake but wanted to rest a while. I left her to do that. It is now about an hour later. I will check on her again and see if she would like to get up for lunch.

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The Rest of Our Day Yesterday

Since our sitter was unable to come yesterday, I decided to see just how long Kate would sleep if I didn’t wake her. When she was still sleeping soundly at 11:30, I decided to put on some music. About fifteen minutes later, I checked on her. She opened her eyes as I approached the bed. I won’t know how long she would have slept, but I decided it was better to get her up. Although she sometimes takes as long as two hours to get ready to leave the house after getting out of bed, she was ready in an hour and fifteen minutes. Except for needing help getting her pants on and misplacing the underwear and socks that I had put with her clothes, everything went smoothly.  (I haven’t gotten used to the rapid disappearance of things like her underwear and socks. I looked in the obvious places around the chair where I had put them without any luck. I keep a large supply of both items. It comes in handy at times like that.) I asked if she wanted my help getting dressed. She didn’t, so I felt sorry for her when she had to ask. She still wants to be independent. That is something I understand.

We went to lunch at Panera and stayed there for about two hours before going home. When we came inside, Kate went directly to the bathroom off the laundry room. I went to the back of the house. I walked back to the family room where I expected to see her. She wasn’t there. I looked in several rooms and still didn’t find her. I called to her. There was no answer. Then I went to the living room. She was lying down on the sofa. It was obvious that she wanted more sleep. I let her stay there until 4:30. Then I decided she would be awake all night if I didn’t get her up. It turned out that she was awake although she must have been dreaming something. When I walked in, she said, “That’s funny.” I asked what was funny. She thought a moment but couldn’t remember. I asked if she had been dreaming. She said, “Maybe so.” The she asked, “Where are we?”

We went back to Panera. As we got out of the car, she asked, “Where are we?” I told her we were in Knoxville. She said, “I know that.” Then I said, “Panera.” After we sat down, she said, “I think I remember this place.” A few minutes later, she said, “You’re a nice guy. I guess that’s why I married you?” I said, “And we’ve been married 55 years.” She looked skeptical and said, “You must have been gone a lot.” Then she said, “What’s your name?” She asked me to repeat it slowly. Not too long after that she said, “I think I’ve been here before.”

From Panera, we went to dinner. She told me she was sleepy and might go to bed soon after we to home. When we returned to the house, she said, “They take very good care of this place.” Once we were inside, she commented on how much she liked the family room. She does this almost every time come back home. It always sounds like it’s the first time she has seen it. Sometimes she doesn’t recognize it as our house. I’m not sure what she was thinking last night. She asked what she should do now. I suggested she might want to brush her teeth. She said, “Where’s the bathroom?” I said, “I’ll show you” and showed her the way.

She had asked if there were something on TV that we might watch. I decided to try the DVD of Les Miserables again. This was the first time I recall that it did not get her full attention. She worked on her iPad, but put it down periodically to focus on particular songs, but it was clear that it did not grab her the way it had in the past.

Our son called, and we had a nice conversation with him. I handed the phone to Kate to answer. In previous occasions when I have done this, she has declined and handed the phone back to me. This time she accepted it and took the lead in our conversation. She handled herself well except for getting confused about what Kevin was telling her about a recent business trip. After his call, she got ready for bed but was still awake an hour later when I got in bed.

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A Different Kind of Monday

So much of my attention is focused on Kate and the changes she experiences that I often overlook the fact that change us occurring for everyone on a daily basis. I think of that now because Kate hasn’t even stirred yet, and I know this Monday will be different for us. Last night, I received a phone call from the agency that provides the sitters for Kate. Marilyn, who was supposed to be here from noon to 4:00 is sick and will not be able to come. They were quite willing to send a new person, but I declined. I would rather change my plans for the day than bring in a sitter that Kate has never met. Actually, I am rather glad to have another day without a sitter.

Kate’s morning routine continues to be erratic. After thinking that she was settling into getting up late, she got up early several days in a row. The past few days she has gone back to sleeping late. Yesterday was another day when I had to get Kate up earlier than she wanted. Fortunately, she was very cooperative, but I felt bad about it. She has been very tired in the morning. I thought it might be good to let her sleep this morning but knew that the sitter comes at noon on Mondays, and I didn’t want her to wake up after I had left for Rotary. It’s not that I don’t think she could handle it. I just know that she often needs my help when she gets up. Of course, at some point, I will probably have a sitter to help in the morning. I don’t think either of us is ready to do that right now.

I often mention that Kate either sleeps late or surprises me by getting up early. She has experienced one other change in the past week or two. She doesn’t seem to go to sleep as quickly as she used to. There are some nights when she hasn’t gone to sleep as long as an hour or two after going to bed. I don’t ever recall that before. Of course, that could easily play a role in her needing to sleep in the morning. At dinner, she frequently tells me that she is going to “crash” early; however, she seems to get her second wind after we are home. When she was on Trazodone, she went to sleep rather quickly, but I don’t want to go back to that just yet. On the whole, I think she has been more alert since we discontinued it six or seven months ago. Her only groggy moments occur when she wakes up in the morning. Trazadone could exacerbate her confusion.

At any rate, I don’t plan to go to Rotary today. I also had a United Way meeting scheduled at 2:00. I will skip that as well. Kate and I usually have nice days together. I’ll take advantage of this change in the sitter’s schedule to enjoy the day with her.

I should add that yesterday was another good day. Since Kate got up late, we went directly to lunch. That gave us a brief time at home before going to see the musical Buddy at one of our local theaters. We had a good time. From there we went to dinner and then back home to relax the rest of the evening.

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Another Slow Start and Strong Finish

Because we were going to Nashville yesterday to visit our friend, Ellen, I wanted to get Kate up a little earlier and hoped that would be possible given that she went to bed earlier the night before. That wasn’t to be. It took over an hour to get her out of bed. She was very tired, but I didn’t rush her. She never got upset with me. Nor did she give me any strange looks as though she didn’t recognize me. Close to the time she got up she said, “Where am I?” I told her she was in her bedroom at her house in Knoxville.” She said, “Who are you?” I said, “I’ll bet I don’t look like a stranger.” She said, “No.” Then I told her that I am her husband. She didn’t express surprise or any other emotion. Then she asked, “What’s your name?” After I told her, she said, “What’s my name?” I told her. Again, she asked, “Where am I?” Then, “What’s your name?” She asked me to repeat my name slowly. Over the course of the next 10-15 minutes, she repeated these questions several times.

She wanted my help getting out of bed. She also wanted me to tell her what she should do. I suggested that she go to the bathroom and then get dressed. That gave her too much information. I led her to the bathroom. After using the toilet, she wanted to know  what she should do. I told her she should brush her teeth. When she was finished, I helped her with her clothes. She still likes to do as much as she can, but she also likes me to help, especially determining the front and back of her pants and top. She also gets her feet stuck in the pant legs. I get the bottom of the pant legs over her feet. Then she is fine.

After she was dressed, she began to appear normal. We had a quick lunch at Panera and left for Nashville where we had a good visit with Ellen. She was surprised and glad to see us. I am sure that her daughter had told her we were coming. She just can’t remember. That is one of the few signs I can see of her memory problems. She is always surprised to see us. I also notice it in other things like her not remembering the names of her grandchildren. During our last visit, I noticed some signs of confusion. This time she seemed more confused. I was surprised, however, that I was able to understand more of what she said this time than the last. It could be that her ability to speak goes through ups and downs in the same way that Kate’s memory does.

We were with Ellen a full two hours. We don’t often stay that long, and it didn’t seem long at all. I didn’t play as much music as our two previous times, but it was just as meaningful as before. I played a series of YouTube videos of Renee Fleming. At one point, Kate reached out and took Ellen’s hand, and they shed a few tears as they enjoyed the music. I love seeing each of them express such enjoyment. I sometimes wonder how long we will be able to keep up these visits. Both of them are declining, but I don’t see anything yet that will prevent our continuing to come. I hope that’s so.

We stopped for dinner on the way home. It was a restaurant that is a cut above most of the ones we frequent, but it seemed like a good way to celebrate such a nice afternoon. It made for another nice moment for Kate and me. We got home late, so I’ll be interested in seeing when Kate gets up this morning. I checked on her a few minutes ago. She had gotten up to go to the bathroom and then went the guest room and got into bed. When I asked if she wanted to rest a little longer, she smiled and said she did. I didn’t see any sign of confusion, and she seemed both cheerful and relaxed.

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A Very Early and Unusual Start Yesterday

It seems like almost every day brings something new. It happened again yesterday morning. I got up to go the bathroom just before 4:30. When I got back into bed, Kate pointed toward the bathroom and said, “Is he still there?” I said, “No, he’s gone.” Then she started to get up. I thought she wanted to go to the bathroom. I asked if that was where she was going. She said, “No.” One of the interesting things was that she appeared to be wide awake. She showed no signs of grogginess the way she usually does when she wakes up. In this case, I don’t think she was really awake. I think she was sleep walking and talking in her sleep. The way she talked just didn’t sound the way she would normally talk. It was more like she and I had been in a conversation, and she was continuing it. I suppose it was more hallucination than anything else. Maybe she was having a dream.

Then she began to look for a light. She finally found the lamp on the table beside my bed and turned it on. I didn’t understand everything she was saying, but it seemed clear that she was planning to get up for the day. I told her it was 4:30 in the morning and that we ought to go back to sleep for a while. She turned off the light and went to the bathroom where she said she was going to brush her teeth. She took longer than I thought was necessary, and I got up to check on her. She had squeezed toothpaste into a plastic cup that she keeps on the counter and filled it with water. Then she started turning the mix with her tooth brush. I helped her get toothpaste on her brush and suggested we get to bed. Then she asked if someone was going to clean up the mess she had made. I told her to leave it and someone would take care of it. When she got up later, she seemed fine.

At lunch, I said something about our having lived in Raleigh after finishing graduate school at the University of Wisconsin. She asked, “What were we doing in Raleigh.” I told her that I was on the faculty at NC State. She said, “What did you teach?” It was telling that nothing rang a bell as I told her about our time there.

She was also a little confused at dinner. We ate at our regular Friday night pizza place. As we walked in, she said she liked their “Christmas lights.” There were no Christmas lights. In fact, I didn’t see anything that looked like lighting that she would have confused as Christmas lights. Fortunately, she didn’t turn that into a conversation. I don’t think I could have carried that off for very long. It wasn’t long before she said, “I think I’m going to miss this place.” I took that to mean Knoxville. It’s been a while since she has said much about our moving to Texas, but she has said several things lately that convey that is still on her mind.

When we got back home, she responded to our house as though it is not the house in which we are currently living. She wanted to brush her teeth and asked me where the bathroom is. I showed her. A little later, she specifically asked me who lived here. I told her it was our house and that we had lived here for 21 years. She found that puzzling. She didn’t remember it at all.

She was also very tired and got into bed a few minutes after 8:00. I hope that means she will get up early today. I’d rather not have to rush her. We are going to Nashville to visit her friend Ellen.

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Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

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More Signs of Diminishing Memory

It seems like each day brings new changes in memory, sleep, and dependence. Yesterday fell into that pattern. About 7:30, I heard sounds coming from the back of the house. When I checked, I found that Kate had gotten up and was in the shower. I went back to the kitchen before returning another fifteen minutes later. She was in bed in the room where she keeps her clothes. I approached her and asked if she wanted to get up or rest a little longer. She wanted to rest. It was 10:00 when I checked again. This time when I asked about getting up, she said, “Where are my clothes?” I told her they were on the bed and handed them to her. She started to get dressed but wanted my help.

It wasn’t long before she asked who I am. When I said I was her husband, she said, “That can’t be. I wouldn’t have married you.” She didn’t say it in a nasty way, but she really couldn’t grasp that we were married. I could see that I wasn’t going to convince her and dropped the subject and focused on getting ready.

As we drove to Panera, she asked my name and her name. She asked again almost immediately after asking the first time. She also asked while we were at Panera and when we were at lunch. Mixed in with the questions about family names was a question about “where we are right now.” I don’t recall her asking so many times before. It is as though she is grasping to hold on to the names and places that mean so much to her.

When we got home after lunch, she wanted me to tell her what she could do. I suggested that she brush her teeth and then come back to the family room where she could work on her iPad. I told her I was also going to the Y and would set up the DVD of Les Misérables for her and Marilyn to watch if they wanted to. She said, “Can I just go with you.”

I started putting up the clothes I had washed and folded. This involved my moving from room to room. After Kate had brushed her teeth, she called to me several times saying, “Hey” or “Where are you?” Each time I answered she was confused when I told her the room I was in. She no longer knows where I am when I say “Our bedroom.” I’m not sure about the kitchen or family room. What I sensed most was that she wanted to be wherever I was.

Before Marilyn arrived, I told Kate that I was going to the Y. She said, “Don’t leave me.” I told her I wasn’t going to leave her alone, that Marilyn, the sitter, would be with her. She said, “Good.” When Marilyn arrived, I told her and Kate about the DVD I had put in the player and reminded them about going to Panera if they wanted. Kate said, “I think I’ll just go with you.” I told her I thought it would be better if she stayed with Marilyn. She accepted that without any hesitation, but she forgot before I got away and said, “Why can’t I go with you?” I explained. Again, she didn’t voice any objection.

When I got home, Marilyn told me they had watched all of Les Miserables and had been in the family room since it ended. When she left, I walked over to Kate and told her I was glad to see her and that I missed her when she wasn’t with me. She said she felt the same way about me. I kissed her, and she said, “What’s your name?” Then she said, “I didn’t have anything to do.” I told her I thought she had watched Les Miz. She said they hadn’t but she would like to see it. This is another good indication of her problem with short-term memory.

I went to our bedroom before we left for dinner when I heard Kate say, “Hello?” She was obviously looking for me. I reached her as she was coming out of the kitchen. She had a bewildered look on her face. Then when she saw me, she looked relieved. All of these things tell me she is experiencing more insecurity now and that being with me makes her feel more comfortable.

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A Conversation at Dinner Last Night

As Kate continues her recent decline, she is more cognizant of her deficits than I might have thought. I believe this is one reason she is expressing more attachment to me. She knows she needs and depends on me. At the same time, I am becoming more sensitive to the fact that I am slowly (and now not so slowly) losing her. Each of our responses to her changes were captured in a brief moment at dinner last night.

She had asked my name and where we were. Then she said, “I’m going to try to do better (remembering).” I said, “As we age, it’s just harder to remember things.” She looked at me and said very calmly, but seriously, “You know it’s more than that.” A moment later, she said, “I’m just glad I have you.” I said, “You know I will always be with you.” Then I added, “Till death do us part.” Then we both acknowledged our inability stop that ultimate separation.

I don’t know that she remembered that she has Alzheimer’s and didn’t pursue it. Her comment does reflect an awareness that her memory problem is not just a matter of getting old. It reminds me of how she felt as far back as 2006 when she believed she had Alzheimer’s. She knew then and she knows now that her problem is serious. It’s not something that everyone experiences.

My response to her also reflects my deeper feelings about losing her. I don’t want to let her go, but that is something I can’t control. I do want her to be secure in knowing that I really will be here for her “till death do us part.”