Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

Signs of a Cold or Alzheimer’s?

Kate’s cold and accompanying cough continued yesterday. I believe it was somewhat, but not dramatically, improved. It’s been an interesting cold in that her symptoms have been pretty even over the course of the past week. She hasn’t had a fever, and she goes long periods (an hour or two or more) without coughing. She doesn’t go quite as long without blowing her nose, but that also comes and goes.

Her overall behavior, however, suggests she has not been herself. She has been more confused and dependent. She has had greater difficulty working her jigsaw puzzles. She has actually had moments when she didn’t know what she should do with pieces once they were scattered across the screen of her iPad. I don’t mean she didn’t know the exact place to put them; she didn’t know what to do at all. She has also had several hallucinatory experiences. Two of those were a week ago, and one occurred last night.

We stopped at a traffic light on our way home from dinner, and she said, “Is there anything I can do to help you?” This came out of the blue for me. I didn’t know what she might have been thinking and said, “What made you ask that?” She said, “You’ve been going through so much.” I was still confused but decided not to question her. I simply assured her that I was getting along well. I told her that she had always been my support, that she should just continue that. She appeared relieved.

As usual, she worked on her iPad after we got home from dinner. She couldn’t remember how to start, that is, to open the puzzle app. This was not the first time. I showed her as I have done before. Once it was open, I showed her the various options she could choose. I walked away, and she immediately ran into a problem. She hit an arrow at the top left of the screen that took her to the store instead of selecting one of the puzzle options that filled the rest of the screen. That, too, was not the first time, but it is becoming more frequent. When she went back to the puzzles, she worked them for about an hour. Our son called as she was getting started. She said hello with her usual enthusiasm, but then quickly returned to her puzzles. While I was on the phone, she asked me for help several times. Her attention was clearly on the puzzles and not the phone call from Kevin.

When I got off the phone, she wanted to get ready for bed. First, she walked over to me and expressed her concern about me. She made reference to “that man.” I asked if she meant Kevin. She didn’t, but she was unable to tell me who “that man” is. I did grasp that she was again worried about me and the load I am carrying. One might think she was talking about my role as a caregiver, but it was not. I got the distinct impression that it had something to do with my work or volunteer activities. Interestingly, they are minimal these days; however, I am sure hallucinatory experiences often relate to distant memories.

She was tired and went to bed a little earlier than usual. She had done the same the night before. I think this could be related to her cold. After thirty minutes or so, she appeared to be asleep. I joined her thirty minutes later. When I did, I discovered that she was awake and whimpering. I asked her what was wrong. She didn’t (couldn’t?) explain but said, “The babies.” I told her I didn’t understand but wanted to help her. She went on to say, “I do want a baby, maybe two.” I mentioned our having had two babies who were now grown up. She was startled, not about having babies, but that she and I had babies. I told her I was her husband. She strongly denied it. I knew I needed to go in a different direction.

This was another time I felt explanations were irrelevant; she needed comfort. I told her just that and said, “I love you dearly, and I want to comfort you.” She said, “I know you do. I can tell by your voice that you’re not just saying that.” That began what may have been close to an hour of conversation during which she talked, and I gave supportive responses. I never fully understood what it was that prompted her worry. At one point, I asked her if she were afraid. She said she was. I was never able to discover why.

What I do know is that she thought she was young and unmarried. A couple of times she said, “I can have a child. I have one now.” One of those times she put both hands on her stomach as she said this. That may have meant she was carrying a child now. She also responded to me as if she knew I were her husband. I told her I loved her, and she said she loved me. Despite this, I don’t believe she ever recognized that I am her husband. I was just someone she felt very close to. She was very comfortable talking with me. Finally, she relaxed, and we both fell asleep.

It was a week ago yesterday afternoon that I noticed the first sign that she was getting sick. She coughed a few times, and it didn’t sound like a normal clearing of her throat. The next morning it was obvious she had a cold. It was that afternoon that she had an hallucination that involved our working in some kind of education project in another country. At the time I wondered if that could have been a side effect of the Robitussin DM or Zyrtec, the cold itself, or her Alzheimer’s.

One thing is clear. She has been noticeably different this week. I have eliminated the Robitussin and Zyrtec. I am left with the possibility of the cold itself or Alzheimer’s. At the moment, I believe Alzheimer’s is the primary cause and that the cold may have aggravated the situation. Time will tell.

Feeling Insecure

It has been a year and four months since I first got a sitter to be with Kate for four hours three days a week. I put off making the decision to do this a long time. I was concerned about how Kate would respond. It seemed to me that she felt pretty secure that she could take care of herself and, thus, didn’t need someone to stay with her. When I told her minutes before the sitter’s first visit, she asked me why the person was coming. I told her I would feel more comfortable not leaving her alone. She said, “Oh, okay.” That was it. With only a few exceptions, she has not seemed to mind having a sitter since then. Yesterday was one of those.

I had tried gently to wake her in time for her to shower and dress before the sitter arrived. I didn’t push because I have learned that if she didn’t want to get up, Valorie could take care of helping her. At 11:15, she asked if she could stay in bed a little longer. I told her that was all right.

When Valorie arrived, I went back to the bedroom and told Kate that she was here and that I was going to the Y. She gave me a disapproving look but didn’t say anything. Valorie walked in the room to say hello, and I said my goodbyes.

When I returned four hours later, they were both seated in the family room. Kate was resting with her eyes closed. She didn’t show any sign that she was glad to see me. Valorie got up to leave and said goodbye. Kate didn’t say anything. As I walked Valorie to the door, she told me that she had helped Kate get to the shower and dressed. She said that twice Kate was very abrupt with her and said something like, “I can do that myself.” Valorie said when that happened, she backed off and let Kate do it on her own.

I could easily envision what happened. I told Valorie she is sometimes the same way with me. In this particular case, I believe Kate might have been more demonstrative than usual because she was bothered by my having left her. After Valorie was gone, I went back to Kate and told her I was glad to see her. She said, “I’m glad to see you too.” Her tone of voice led me to translate that to “Boy, am I glad you are here.” We didn’t say anything more at that time.

Later as we were going to dinner, I said, “I really enjoy being with you.” With some emotion she said, “I enjoy being with you too. <pause> I feel comfortable with you. I feel secure that you won’t let anything happen to me. I feel safe.” This is not the first or the second time she has said things like this. I don’t think she is afraid of being the object of an aggressive act by someone. I know that most (almost all) of the time she is unsure of where she is and what is going on around her. I am the constant helpmate for her. She has a feeling of complete trust. When I am not with her, she loses that sense of security. I believe that is especially true when she has a sitter with whom she has spent considerably less time than she has with me.

I have two emotional reactions to the situation. I feel like having a sitter less often. This is a case in which I will let my head take charge over the emotion. In the long run, I am going to need more help from sitters, not less. I think this is just a rough spot in the road. It isn’t one that should alter my overall plan.

The other emotion is a feeling of responsibility. I feel she needs me more now than ever. I want to make sure that the rest of her life is as smooth as it can be. That feeling was reinforced by a brief conversation we had last night.

We went to dinner with a couple we know from our music nights at Casa Bella. We ate at a new German restaurant near their house. We had never been there before, and I believe Kate was a bit uneasy. We got a durprise when we walked in. There is a bell connected to the door of the entrance. It has a surprisingly loud ring each time the door is opened. Kate is very sensitive to noises. (I scared her the other day when I turned on the faucet in the laundry. The sudden noise of the water frightened her.) The bell shook her momentarily. The menu items were very different. She initially tried to read the menu but quickly gave up. She had trouble following our conversation and had to ask questions to help her understand. She often asks me to slow down when I am talking to her. Following three other people, each of whom is a talker, is an impossibility. I really felt for her.

When we got in the car to go home, she said, “Richard, (yes, she remembered my name) I don’t understand what is happening. I’m so confused.” I asked if she could explain a little more. She couldn’t. I told her I wanted to help in any way I could. I reminded her of our wedding vows, specifically the part about “sickness and in health.” I told her I would always be with her. She said she understood that and has never doubted it. I realize, of course, that we attach different meanings to that. I know where we are headed. She doesn’t, but she does know she can count on me. I intend to honor that promise.

Sleep

There are a number of recurring themes that appear in my posts. One of those is Kate’s sleep. For most of the years since her diagnosis, I didn’t feel it necessary to comment on sleep. Looking back, I believe that was a result of Trazadone’s doing just what it was prescribed to do. Prior to that Kate had often awakened in the middle of the night and couldn’t go back to sleep. Her own prescription for that was listening to books on her iPod. She did that for several years, some of which preceded her diagnosis. After her doctor introduced Trazadone, she slept through the night without a problem. That put us on a regular schedule though sometimes she went to bed earlier than she had before. I now realize that probably related to what time she took her evening meds.

It wasn’t until this past spring that I noticed a change in her sleep. Her pattern was more erratic. She started sleeping later than before, but she sometimes got up earlier. We took her off Trazadone thinking that it might be the cause of the change. It did make some difference, especially at first. She began to go to bed a little later and closer to the time I went to bed. Over the ensuing months, she has gotten into a pattern of sleeping later. She is also much slower to get ready once she is awake. That is especially true when I wake her.

That is background for what I have observed in the past few days. Two days ago while the sitter was here, she didn’t get up until 3:15. I was concerned that she might not be able to get to sleep that night. I needn’t have worried. She went to sleep at her regular time and slept through the night. Not only that, she only got up when she did because I got her up. That was around 11:00. I thought she must have had plenty of sleep during the previous 24-36 hours.

As often happens, I was wrong. When we returned home from lunch, she wanted to know what she could do. I suggested that we sit in the family room and go through one of the photo albums of her father’s family. She liked the idea and enjoyed looking at the photos on the first few pages. Then she said she was sleepy and asked if we could look at it later. I told her that would be fine. She lay down on the sofa and rested for a full two hours before I got her up. It was almost 5:00. I told her it wouldn’t be long before going to dinner. She said she would like to go right then. First, she wanted to go the bathroom and brush her teeth. It was almost thirty minutes later that we left.

Once again, I thought she might have trouble going to sleep last night. Again, I was wrong. She had no problem at all. I guess the next question is “Will she sleep late again this morning?” I’m not making any predictions. I’ll just wait and see. One thing seems to be sure. Even though she surprises me by getting up early some mornings, she needs more sleep now than she used to. What this means as we go forward is unclear. I know from other caregivers that their spouses often slept more than Kate. I am beginning to accept that Kate is on her way to spending more of her time in bed. As always, time will tell.

Another Early Morning Experience

Yesterday it was 5:00. Today it was 4:00. The experience was similar but not exactly the same. Yesterday she seemed afraid of something that happened in a dream. This morning I felt a wet spot in the bed and asked her if she wanted to go to the bathroom. She said she did. I walked around to her side of the bed and asked if she would like me to help her to the bathroom. She said yes. I helped her sit up on the side of the bed. She said, “Thank you. Who are you?” I said, “I am Richard Creighton, and I am your husband.” She didn’t act surprised or in disbelief as she sometimes does. She held my hand all the way to the bathroom. On the way, she asked my name again. I told her I would get her a fresh gown and underwear.

This was a time I had to make a quick decision. Do I take off the sheets and put on clean ones or do I put something over the wet spot? I decided to do the minimum and focus on getting back to sleep. I got two towels to put over the wet spot. Kate brought another one from the bathroom that I placed over the others.

When we got back in bed, Kate thanked me several times. I said, “I like to help you. I will always be here for you. I want you to count on that.” She thanked me again and said, “What’s your name?” She said, “Oh, I knew that.” That started a conversation that must have lasted thirty minutes. It was very much the same as the previous night. After asking my name, she wanted to know her own name. Then it was her mother’s name. That led to her asking the names of her father and children. After my telling her each name, she asked me to tell her again.

Like the previous night, she never sounded anxious. She was very natural in asking and receiving what I told her. As on other occasions, she responded with good feelings about her mother and her family. She was especially pleased when I told her that our oldest grandson, Brian, is in his second year at TCU and that his sister, Heather, would be a freshman at TCU next fall. I told her that her father was one of eight children. She asked me to tell her their names.

Our Early Morning Experience

Early this morning I heard Kate whimpering. I asked what was bothering her. Our conversation went something like this and was repeated several times.

KATE:            “Where am I?”

RICHARD:    “You’re in our bed in our very own house in Knoxville.”

KATE:            “Thank God. <pause> Who are you?”

RICHARD:    “Richard Lee Creighton, and I am your husband.”

KATE:            (as if talking to herself) “That’s right. Where am I?”

RICHARD:    “You’re in your bed at home.”

KATE:            “What’s your name?”

RICHARD:    “Richard Creighton.”

KATE:            “I’m glad you’re with me. I feel safe when you’re with me.”

From this point she wanted to know the names of her mother and father, if we have children, and their names. Then she wanted to go to the bathroom and asked where it is. I asked if she wanted me to help her there. She did. I helped her up and walked her to the bathroom. As we walked, she said, “Are we in the hospital?” I said, “No, we’re at home. You’re going to be all right. I’ll make sure of that.” She said, “I’m glad you’re here. I feel safe with you.”

After she finished in the bathroom, I helped her back to bed. That began a repeat of the conversation above. She wanted to know where she was, who I was, and to hear about our children and grandchildren. She began to relax, and we both fell asleep.

I need to say that this experience was not exactly like the anxiety attacks she has had before. This one seemed more like a response to a bad dream. She began to feel relieved right away when I told her where she was and who I am. The anxiety attacks were more enduring. Her concern then was her state of mind. This time she seemed afraid of something that was happening to her. The fact that she asked if she were in a hospital and that she felt relief when I told her she was in her own home makes be think it had to have been a dream. This hasn’t happened often, but it has occurred several times over the past few years.

It is almost 9:30 right now, and she is still sleeping. I’ll probably see about waking her soon. If today is half as good as yesterday, it will be a terrific day.

An Unusual Experience

Kate and I went to Panera after the sitter left yesterday. As always, she worked puzzles on her iPad while I worked on my laptop. About 5:30, I asked if she might be ready for dinner. She held her hand up as if to say, “Wait a minute.” She was working intensely on her iPad. She looked very serious as though she had run into a problem. I couldn’t see the screen but had to assume she was working a puzzle. That is all she does on it unless she accidentally opens another app. When that happens, she asks for my help getting back to her puzzles. This doesn’t involve the same seriousness I was witnessing.

I let her continue without interfering. About ten minutes passed. She was still engrossed with her iPad. I offered to help her. Once again she held up her hand to stop me. She finally closed her iPad, something she does when she gives up on solving a problem she encounters. She was disturbed. Tears were beginning to form in her eyes although she didn’t cry. I asked her to tell me what was bothering her. She tried to speak, but she couldn’t say anything that I could understand. At first, I thought she might be worried about her inability to work her puzzles. I did finally grasp that she was trying to tell me about something horrible that she had read.

Yesterday’s speaker at Rotary was the daughter of Holocaust survivors. I had told Kate what an emotional experience it had been for the entire club. I began to suspect that she had been thinking about the Holocaust. When I asked if that was what was bothering her, she said it was. She didn’t mean my telling her about the speaker. I am sure she didn’t remember I had done that, but somewhere in her brain the memory of the Holocaust had disturbed her. This is one of those events that will always be a bit of a mystery. Here is the only explanation that I can offer, and it sounds strange.

Kate is an emotionally sensitive person. That has been especially so since Alzheimer’s came into her life. As a school librarian, she became quite familiar with the Holocaust. Many students worked on research projects on the topic. Kate read a lot on the subject and has always taken an interest in WWII movies that deal with it. Perhaps my telling her about our speaker sparked her latent memories. That itself is not hard to imagine. The question is, “What kind of experience did she have for ten to fifteen minutes?” It looked like she was working on a puzzle, but she was too intent and emotionally involved for that. She conveyed that she had been looking at something about the Holocaust on her iPad. I don’t believe that could have occurred. She wouldn’t have known how to locate that kind of information. My only thought is that she was having an hallucinatory experience. She has had them before, but they were different. They have always involved her telling me about something that someone has said or done that I know didn’t occur. This time I was watching her as she was having an hallucination, BUT I’ll never know if that is really what happened.

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.

Early Start Today

Last night, Kate was tired and had trouble working on her iPad when we returned from dinner. I’m not sure her problem with her puzzles relates only to being tired. She seems to experience increasing difficulty remembering how to open her puzzle program or how to get a new puzzle once it is open. As I have mentioned before, she is also asking for my help when she has only one or two pieces left. It should be pretty easy to see where the pieces go with a 16-piece puzzle, but it is not easy for her. It is not unusual for her to ask me to finish the puzzle for her. She finally gave up trying and got in bed around 8:00. When I joined her closer to 10:00, she was awake. I got the impression she had been awake the whole time.

Around 5:30 this morning, she must have had a dream. She moved close to me and put her arm around me and held tightly. She did not appear to be awake. Neither she nor I said a word. I put my arm around her. She was very tense. As I held her, she relaxed. Since we didn’t speak, I don’t know if Kate remembered my name. The way she reached for me made it clear that she recognized me as someone she knows. I take it as another sign that she looks to me for security.

About 8:30, I checked on her. I expected her to be sleeping soundly. To my surprise, she was getting dressed. I helped her briefly, and she was ready to leave for Panera and her muffin shortly after 9:00. It’s a little like old times. As we walked in, we spoke with a couple we have seen most frequently on our visits. The man and I have connected, and each of us has missed seeing each other.  We arrived before a Bible study group from a nearby Baptist church. That gave us a moment to speak with one of their group whom we have known through musical circles in town. We also said hello to a young woman seated at the table next to ours. She is a medical student who often spends time at Panera studying. Kate went over to her, and they spoke for a few minutes. Since she didn’t get as much sleep as usual, I suspect Kate will be ready to go back home and rest a bit before we go to lunch, but we’re off to a good start.

An Early Start Today

I don’t know what has happened, but Kate was up early again this morning. At 8:35, I heard her say, “Hey.” I was in the kitchen. Before I could get back to her, she had said “Hey” a couple of other times. Note that this is a new way to call me. Until the past few days, she has called my name. It may be that she is substituting “Hey” because he doesn’t remember my name. She was standing in the middle of our bedroom and wanted to know what she should do. I asked if she were ready to get up. She said she was, so I told her she might want to take a shower. She said, “Where?” I pointed to our bathroom. Then she asked about her clothes. This was a morning I had slipped and not put them out for her. I said I would be glad to get them. She said, “That would be nice.”

Fifteen minutes later, I checked on her. She was sitting in a chair across from the bed where I had laid out her clothes. I asked if she needed anything. She said no. Then she asked, “Who are you?” I gave her my name and said, “I am your husband.” She gave me her usual look of surprise. My curiosity got the better of me, and I asked, “Who did you think I was? Your boyfriend?” She said, “I don’t know.” I went to the bathroom to brush my teeth. When I returned, she said, “Are you my father?” I said, “No, I am your husband.” This time she didn’t look surprised and said, “I guess I’ll get used to it.”

I checked on her again at 9:40, she was in bed. It is not uncommon at all for her to get back in bed. Normally, she does this before dressing. I could see her top and pants on the floor. I asked if I could help her. She said, “Get me some clothes.” That was not said as a command but as an answer to my question. I handed her the top and pants. I asked if she were wearing her underwear. She said no. I found them and gave them to her. Her shoes and socks were on the bedside table. I said, “I’m going to leave you and let you dress.” She said, “Don’t leave me.” This, too, was not said with the sound of an order but as a plea. It turned out that she thought I was going to leave the house, and she would be alone. That sent me an important message about the value of having a sitter. She may prefer having me to having a sitter, but she doesn’t want to be left alone.