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The Cold on Day 8

I am gaining a better perspective on the lives of other caregivers who deal simultaneously with dementia and other health issues at the same time. To be sure, I am getting only a small taste of what others live with, but it does reinforce what I have said before. Kate and I have been fortunate in many ways since her diagnosis. The fact that both of us have been healthy is one of those. Both of us have had colds before, but it is more challenging at this stage of her Alzheimer’s. In the past it was easier for her to manage her own care with limited help from me. The only thing she can do now is blow her nose and spit out the phlegm that accumulates in her throat.

Despite this, her cold has not been especially serious. Her cough is still infrequent. She coughed just after going to bed and didn’t cough again until 1:45. She coughed on and off for about fifteen minutes and stopped. I haven’t heard any coughing until a few minutes ago, and it is now 9:30. What I do hear is her nasal congestion, but it is not constant. I’ve mentioned the sensitivity of the audio from the video cam monitor. Depending on the volume of the music I am playing in the kitchen, I can hear her breathing. When she coughs, I can hear it over any of the music I might be playing.

Apart from the cough and nasal drippage, the only sign of how she feels is that she seems more tired than usual. As I mentioned in a previous post, she slept until 2:00 on Tuesday. Yesterday, I woke her up at noon because she had a massage at 2:00 and a haircut at 3:15. She got along fine. When we returned home, she rested an hour and a half before I got her up for dinner.

She had more trouble working her jigsaw puzzles last night. Part of her problem is visual. Even when there is only one piece left, she has a difficult time locating where to put it. Each puzzle is on a solid-colored background. When the pieces are scattered, the background color is displayed where the pieces go. Thus, when there is only one piece missing, there is a picture with a rather glaring space colored like the background. To any of us, it would be immediately obvious where the last remaining piece should go. It isn’t obvious to her at all. Even when I put my finger on the piece and then on the spot where it goes, she often doesn’t know where to put it. One additional problem that is easier to understand is that she sometimes puts a piece in place but not precisely in place. Kate can’t tell that, and the app does not indicate that the puzzle is complete. Then she calls me. I locate the piece that is causing the problem and push it into place. Then she goes on to the next puzzle.

When she started working her puzzles a few years ago, she chose those with 42 pieces. Over time, I have selected the number of pieces for her. I dropped the number to 25, then 16. I think it is time to go 9 pieces. That’s the fewest available with this particular app. I hope that it will be easier for her after her cataract surgery on February 12.

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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.

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A Day of Ups and Downs

It’s impossible for me to describe yesterday in a single word or phrase. A lot of things were going on. I believe and hope the overriding issue was Kate’s cold which had gotten worse during the previous night. The specific symptoms were, at least initially, her cough and her spitting up phlegm. In the middle of the night she had a coughing spell. She had been pretty much cough free during most of the day. I thought maybe lying down might be a problem and wanted to elevate her head with a larger pillow. It gave me my first glimpse of what it is like trying to help someone with Alzheimer’s. She doesn’t grasp instructions and gets more confused as you try to explain what you are doing or want her to do. It was a bit frustrating for both of us. This didn’t last long. It may have been less than thirty minutes. She and I went back to sleep.

A number of times I have mentioned ways in which Kate and I have been fortunate. One of those is that neither of us has had an illness that has made dealing with her Alzheimer’s more difficult. My experience that night gave me a sense of what some people deal with all the time. It also confirmed for me that as Kate continues her decline, I might very well want help during the night in order for me to get the sleep I need to care for her at other times.

I let her sleep yesterday morning. I felt that rest might be the best medicine. She awoke about 7:00, went to the bathroom and went back to bed. From the video cam I had noticed her getting out of bed and went to the bedroom. Her head was more stuffed up than the day before, but she was more clear-headed than usual.

About 11:00, I noticed she was stirring. I went to the bedroom. She seemed wide awake but relaxing in bed. I mentioned going to lunch and asked if she were ready to get up. She said she was. I didn’t push her. I let her take her time. She got her shower and got back in bed. I decided to forgo our usual lunch plans. At dinner the night before she coughed quite loudly a couple of times. I didn’t want to disturb anyone at our usual restaurant that is somewhat quiet and reasonably active on Sunday. I decided to get a quick lunch at Panera.

Before we were ready to leave, two things happened. First, Kate started coughing. Second, as I tried to get her dressed and take her medicine, I rushed her. I also had to correct her on several things. For example, it took a while for her to take her meds. She would take one and leave the others. I had to remind her several times she had more to take. Finally, she broke down. She said, “I just can’t do anything right.” She was also miffed at me for rushing her. Seeing a panic attack coming, I shifted into a more conciliatory style. That may have prevented a more serious attack, but it didn’t immediately stop her emotional reactions.

By this time, I felt it was best to get a to-go order at Panera and bring it back home. The two of us went in the car and brought our lunch back home. It was an interesting change. I think we have only eaten a meal at home two or three times in the past four or five years.

We had a very pleasant time at home between lunch and dinner. We relaxed in the family room while Kate worked on her iPad, and I read some autobiographical materials that a former roommate at TCU had sent me. Kate didn’t have any problem coughing and seemed to be getting along well.

I felt better about taking her out for dinner. We went to a small Mediterranean café near our home. I knew there wouldn’t be a crowd on Sunday night. Kate was very relaxed and talkative. Soon after we ordered, she said she was glad we had come back. She thought we were in Texas. I made no effort to correct her. She commented about the restaurant and liking it. Then she began to talk about “the girls” and also language differences. Pretty quickly I recognized she was having the same experience she had had a few days ago when she had her massage. At that time, I sensed that she was talking about being at a school in a foreign country. This time it started with a belief that we were in Texas. The rest of what she said was very similar in both experiences. One thing was different. The other day I speculated it might have been the cold medicine that was responsible. That was not true yesterday. She hadn’t had any.

Her remarks were not continuous. She didn’t constantly repeat the same things over and over, but she kept bringing them up as though she were continuing a conversation with me. This was something of a challenge. I didn’t want to tell her she was imagining everything. I also didn’t want to make up things to add. I simply acknowledged what she said and agreed. When she said “the girls are smart,” I said something like, “They really are.” This went on until after we were back home.

At home, Kate saw her iPad and said, “What’s this?” I told her and said she could work puzzles on it. She was confused about how to open the cover. I showed her. She said, “I hope I know how to do this.” She was confused about how to begin. I showed her and got the first puzzle up. She didn’t know what to do when the pieces were scattered. I ended up completing one puzzle myself just to show her. She worked them for a while before getting frustrated. I decided it might be time for some music therapy.

The previous night I received a phone call from another TCU friend and housemate. He follows my blog and is aware of our use of music videos on YouTube. He told me about a two choirs in Lincoln, Nebraska, that I might want to check out. One of those choirs is the Wartburg College Choir. After dinner last night, I found one of their videos of a concert tour in Germany in connection with the 500th anniversary of the Reformation. It contains beautiful music along with correspondingly beautiful churches and other notable sites. It was a wonderful way to end our day. It was like having an hour-long period of meditation.

As I helped her into bed, she said, “Richard, it’s been a frustrating day. <pause> I’m so frustrated.” I assured her that she could count on me to help her. We didn’t say anything more. This was one more reminder that Kate still recognizes that she has a problem even if she doesn’t know what it is or where it leads.

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Something Unexpected

Every caregiver knows many of the daily tasks are routine. Along with those are a few unexpected things. They can be uncomfortable. We had one of those yesterday afternoon. As I have noted before, one side effect of Aricept is diarrhea. We have controlled that with an antidiarrheal. That has worked well. In the past few days, however, I’ve had the impression that Kate might be experiencing a little constipation. I’ve asked her about it, and she said she wasn’t. I have learned that she is often wrong about things like this. With that in mind, I decided to skip her antidiarrheal night before last.

Yesterday afternoon she had a minor problem with loose stools just as we were about to leave for her massage. She wanted me to show her where the bathroom is. I was surprised when we got there. She wanted me to tell her what to do. I showed her the toilet. She didn’t recognize it. I explained that she had to lift the lid. She was quite puzzled, so I lifted it for her, told her to drop her pants, and sit down. She said, “It’s got a hole in it.” I told her they were made that way so that one could urinate and defecate through it. Once she was on the toilet, I left her.

Very shortly, she called me. When I got to her, we were both upset, but for different reasons. I felt terrible about not giving her the antidiarrheal and thought she was upset about her accident. In the process of helping her, I discovered that she was upset about something totally unrelated.

This was one of those times that she began to talk as though we had been involved in something together. Thus, she thought I would understand what she was talking about. For me, it was like walking into an ongoing conversation and trying to figure out what in the world she was talking about.

What I heard first was, “I’m so sorry. It’s all my fault. I’m sorry to get you involved.” I felt bad and said, “It wasn’t your fault at all. It was all my fault.” She said, “Well, we both wanted to do the right thing.” As she continued talking, I got an entirely different, though never clear, understanding of what she was talking about. It was when she said, “I really wanted to help these people” that I understood that she wasn’t thinking about her diarrhea. It turns out that she imagined (my word, not hers) that she was working in some kind of overseas program helping the poor. I knew from past experience that it makes no sense to ask questions for clarification. That never works. It was better for me to play along as though I understood exactly what she was saying and why.

She continued to feel she had done something wrong. I tried to change her focus. I suggested that we both were trying to do something right and that things don’t always go the way you want them to go. She accepted that but never fully calmed down before we got to the spa for her massage. As soon as we were inside and saw her massage therapist, she looked somewhat calm, but tired.

After her massage, she and the therapist came out to the lobby. Kate was telling her therapist about this project she was working on. She mentioned how much the people need help and that they were smart. She expressed the importance of the project. I let her finish, and we turned around to leave.

As we walked out the door, she said to me, “My husband is working on it too. And he is really patient and can relate to them.” She continued telling me about her husband until we reached the car. I opened the car door, and she got in her seat. Then I leaned down to connect her seat belt, and she recognized me and said, “Oh, Richard, do you know him?” I told her I did. She said, “He’s a really nice guy. What’s his name?” I told her I didn’t know.

This may be a good place to interject that until she started talking about this project before we left home, she had seemed quite “clear-headed.” She hadn’t been especially talkative, but she seemed to know me as her husband and used my name several times. She has imagined things quite a few times over the past several years, but this talk about the “project” came on so suddenly that I was surprised.

She talked about the project all the way home. It was clear that my earlier thought was correct. She was talking about some kind of educational program in a foreign country. The only thing I can imagine that might have prompted this delusion is our experiences with two different trips with Overseas Adventure Travel. One was to Tanzania, the other to Peru and Ecuador. OAT has schools in both places and always takes its groups to visit them.

When we got home, she wanted to use the bathroom. When she came out of the bathroom, she asked me what she should do. I suggested that she work on her iPad in the family room, and I would join her. I put on some music and we relaxed there for an hour before going to dinner.

When we returned to the house, she worked puzzles on her iPad. I’ve mentioned previously that she is having greater difficulty working her puzzles. Last night she seemed especially confused. She couldn’t figure out how to work her puzzles and wanted me to work them for her. That seemed a bit strange, but she has wanted me to do that a few times in the past. I soon discovered that she did that because she thought we were choosing a puzzle to frame it and give to someone. She had a specific person in mind, but she couldn’t tell me who. She said it was somebody I had told her about. She wanted me to show her how to do the puzzles herself, but I tried in vain to teach her. I focused heavily on trying to get her to recognize the edge pieces, especially the corners. As hard as I tried, she never grasped it.

 

The good thing was that I was able to make her feel better. She thanked me profusely for helping her. She said I was the only one who recognized that she was smart. She commented specifically on the trouble she was having at that moment and the fact that she didn’t seem the way she usually is. That is one more sign of things that she is able to sense while being so seemingly “out of touch” with reality. The more she said, the more I began to think that she might be experiencing a reaction to Robitussin and/or Zyrtec. She started coughing night before last. I called her doctor yesterday morning. She suggested both of these medications. I told Kate about my suspicion and did not give her the evening dose.

I have since done a little exploration of the side effects of Robitussin and found that diarrhea is one of them. That could mean that my not giving her the antidiarrheal the night before may not be the cause of yesterday’s accident. I also noticed that I bought Robitussin-DM. When I did a search on dementia and Robitussin, I found something on the Alzheimer’s Association website that indicated that “DM” is contraindicated for people taking Namenda. That is one of Kate’s medications. Kate’s doctor had suggested either Robitussin or Mucinex. I think I will switch to the latter today.

Because she was having so much trouble, I got Kate to put away her iPad for the night and loaded Les Misérables in the DVD player. She watched intently for the next hour and didn’t want to stop for bed.

She slept through the night though she is coughing a little bit this morning. She is still in bed, and I am using my new video cam to check on her. I have discovered that the audio is particularly effective. After her first cough, I went to the bedroom. She coughed again, but it didn’t sound nearly as bad hearing it directly.

Today the sitter is supposed to come at 1:00. I am going to call the agency as soon as they open and cancel. I want to be able to monitor how well she is doing throughout the day.

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Confusion and Something New

Yesterday Kate and I had a nice day although it began with her not knowing that I am her husband. She got up on her own after I had played about fifteen minutes of soft music. My video cam alerted me to the fact that she was getting up. I went back to the room where she greeted me very normally. She asked about her clothes, and I told her they were on the chair beside the bed. As I helped her up from the bed, she said, “Are you my daddy?” I told I was her husband. She was surprised but did not seemed especially disturbed, just confused that she didn’t know/remember that. I decided not to make an issue of it and walked her to the bathroom where she took a shower. On the way she asked again if I were her daddy. When I said I wasn’t, she asked, “Where is he?” I said, “Texas.” She said, “Where are we?” I told her we were in Knoxville, Tennessee where we live. She looked puzzled but did not say anythng more. After her shower, I helped her get dressed. This was one of those times she wanted to do things herself but kept asking for my help.

I don’t recall our talking again about my being her husband until we were at lunch. She was in a playful mood and teased me a bit. In response to that, I said, “I would marry you again if I could.” She reacted as though that would be terrible. I said, “You wouldn’t like that?” She gave me a look that I interpreted as “Are you kidding?” Then I said, “We could just keep on living together.” She reacted quickly with a disapproving look and said, “I’m surprised you would even say that. What would your mother say?” Isn’t it interesting how powerful such feelings are?  This is coming from deep within the recesses of her mind.

In the course of our conversation I mentioned our children. She asked their names and wanted me to tell her something about them. We never got back to talking directly about my being her husband, but it became clear that she recognized that and was happy about it.

I think I have mentioned that she is sometimes confused about the words she wants to use. Sometimes she uses a word that is obviously the wrong one. Often she recognizes it is wrong and will say, “You know what I mean.” Sometimes I do know. Sometimes I don’t and say so. Other times I say I know when I don’t and hope that when she says more, I will understand.

Yesterday I was surprised when something new happened. She didn’t understand the meaning of two words I used in our conversation. The first occurred when I said that someone we saw at another table looked like a student. She said, “What’s that?” I helped her understand by reminding her (she doesn’t remember) of the time she was teacher. It wasn’t long before she asked me what the men at the next table were talking about. I told her I didn’t know, but it looked like they were businessmen. She said, “What’s that?” Then I explained what a business is.

The night before she asked the wife of the couple we had dinner with what the child at a nearby table was holding. She told Kate that it was a phone. Kate asked what she was doing with it. She explained that the child was probably playing a game. I suspect part of Kate’s not understanding what the child was doing relates to her eyesight. I can’t tell how much relates to her Alzheimer’s and how much is a result of the cataract in her left eye.

Twice yesterday afternoon, she saw her iPad and asked me what it was. I told her it was her iPad, and she said, “What do you do with it?” I told her she could work jigsaw puzzles on it and opened the program for her. She continues to be able to work her puzzles, but it is getting more difficult for her. It is like many other abilities. Sometimes she gets along fine. Other times she runs into problems.

All of these things signal how much her world and mine are changing. I can’t help wondering what life will be like six months from now but not really wanting to know.

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Follow-Up to Yesterday’s Shaky Start

As Kate had wanted, I went back to the bedroom to wake her about 10:30. Although she was sound asleep, she woke up easily. I reminded her that she had asked me to wake her, something I don’t recall her doing before. (I jumped on that opportunity.) She was a little groggy but got right up with a little help. I walked her into the bathroom for her shower and turned on the water. As she took off her night gown, she asked my name. I gave her my name but didn’t mention that I am her husband. She didn’t ask.

When she finished her shower, she asked if she could lie down a little bit. I told her that would be fine. She asked me to come back and get her up. I came back about twenty minutes later. She got up willingly and asked about her clothes. I picked them up from the chair where I had put them earlier and put them beside her on the bed. I gave her a bra and said, “Let’s start with this.” She looked at it strangely. I explained that she could put it on over her head just like putting on a top. I told her it was easier than most bras. She looked at me and said, “How do you know so much about bras?” I chuckled and told her that I had observed her having some difficulty with her other bras that fasten in back and went online to find something easier. I found a company that makes clothing for seniors and ordered several of them.

Although she asked my name off and on throughout the day, she seemed to know that I am her husband. Again, I didn’t ask, but we did talk about her parents and our children. We relaxed at home in the family room after lunch. About forty-five minutes passed. Then she asked, “What is your full name?” I told her. She asked me to repeat it. I did and said, “I’m your ‘Hubby.’” She laughed, not in a way that suggested she didn’t believe but just the opposite.

She continued to work on her iPad for at least another hour before deciding to rest. I thought that was a good idea since we were going to an opera (Tosca) last night and would get home late. This was only the second time in about a year that we have attended an evening event this late. All the music nights at Casa Bella begin at 6:00 and end around 8:30. The opera started at 7:30. We didn’t get to bed until 11:30. That’s a good bit later than our normal routine.

I had been looking forward to the opera and enjoyed it; however, Kate’s experience and mine were quite different. We bumped into a number of people in the lobby we have known from various places around town. I enjoyed seeing everyone, but I think it was a bit overwhelming for Kate. She didn’t appear to recognize anyone. Fortunately, each of the encounters was brief. We were seated beside and behind people we knew. Kate talked with them at the intermission.

When it was over, she was eager to get home. She said she hadn’t been able to understand anything and had “just tuned out.” She said she enjoyed the music but didn’t know what was going on. That fit with my impression during the performance. Several times she responded enthusiastically to a number of the arias. Often she is able to enjoy various performances whose plot she can’t grasp. That happens when she can enjoy the characters or situations in which they are involved. That wasn’t the case last night. In two weeks we are going to see the Live in HD at The Met’s production of Carmen. That will be a good test. If she doesn’t enjoy that, live opera may soon be a thing of the past, not because of the music but a lack of understanding of the plot. I am hopeful that she will continue to enjoy opera night at Casa Bella for quite a while. In that case, the focus is on the music itself.

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A Shaky Start

I had just finished my morning walk around the house just after 8:00 this morning when I checked the video cam in our bedroom. I saw that Kate was standing by her side of the bed. I soon realized that she had gotten up and gone to the bathroom. I went to the room and asked if she needed anything. She asked if she could go back to bed. I told her it was still early and that would be just fine. She said, “Oh, good.”

Once she was back in bed, I could see that she was “uneasy.” It didn’t look like she would go right back to sleep. She asked me if she had to go anyplace. When I told her we didn’t have anything on our agenda today, she breathed an audible sigh of relief. Then she said, “Are you my daddy?” She paused a second and then added, “Or something else.” I said I was her husband. She had a puzzled look on her face. Then she asked, “What’s your name?” She asked me to repeat it again. She said, “I’m going to try to memorize that.” <pause> “Who am I?” I said, “You are Katherine Creighton.” I mentioned her parents, and she asked, “Have I ever met them?” I said, “Yes, they took care of you when you were a little girl and loved you very much.”

She told me she wanted to go back to sleep and asked if I would wake her up. I told her I would but that she could still sleep a while before getting up. I told her I would be in the kitchen if she need anything. Then she closed her eyes. She still seemed a bit uneasy. I asked if she would feel better if I stayed in the room with her. She liked that. I went to get my laptop.

When I returned, she said, “I’m scared.” I sat down on the bed beside her and asked what she was afraid of. First she said, I don’t know.” Then she said, “Do you think they will like me?” I said, “Who do you mean?” She couldn’t tell me, and I said, “You don’t have to worry. Everybody likes Kate. I rubbed her back and she began to relax. She said it felt good. In a few minutes, I got up and went to the chair on my side of the bed where I am writing this post. She is sleeping soundly.

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A Day of Confusion

For the second time this week Kate did not recognize me when she woke up. These occurrences come only days after my saying that she almost always recognizes me as someone she knows and trusts. That is still true, but it makes me question my optimism as to how long this will last.

As I have seen so often, this failure to recognize me came with a mixture of other signs that she sensed more familiarity than her rational ability could express. She didn’t display any sense of surprise when I walked into the room. She appeared to respond to me as she normally does. Then she said, “Who are you?” I said, “Do you recognize me at all?” She said she didn’t, and I gave her my name and told her I am her husband.” She seemed more puzzled than usual by this news. She didn’t recognize either my name or that I am her husband.

At that point, I decided not to make this a point of discussion. I was confident that with a little time she would put it all together. I suggested that she get up and let me take her to lunch. She responded the way she always does and got up. She let me help her dress. She went to brush her teeth, and I went to the kitchen. In a few minutes, I heard her say, “Hey, where are you?” That, too, is very normal. She doesn’t know her way around the house and looks to me to tell her where she should go. As I walked toward the family room, I said, “I’m in the kitchen.” She was standing in the doorway coming into the family room from our bedroom and saw me. We went back to the kitchen where I had her morning meds waiting for her. When she had taken them, I picked up our iPads and cups and we left for lunch at Panera.

While waiting for our order, she asked my name. I told her and said, “I am your husband.” She seemed puzzled and asked how long we had been married. I told her. She didn’t question me. Instead, she asked me her name. That led to her asking if we have children. When I told her, she wanted to know their names. That led to further conversation about our marriage. I told her we had had many good times during our marriage. She agreed and asked me to tell her some of them. After that, I didn’t see any obvious signs that she didn’t know me.

We stayed at Panera about an hour and a half and then returned home where Kate rested almost two hours. Then we went back to dealership to pick up my car that I left the other day. When the service rep walked us to our car, I walked directly to my side. Normally, I would have opened the door for Kate and helped her get settled in with her seat belt. Before I got in the car, I looked back and she was standing at the rear of the car waiting for me to tell her where to go. It is very common for her not to know which side of the car she should use. I know this but had fallen down on the job. I walked her to the passenger’s door. Once she had gotten in she didn’t know where to put her cup. The service rep was waiting for me at the driver’s door. She is the same one I had given my first “Alzheimer’s card” two days before. If I hadn’t already given her one, I would have this time. There was no need now. She understood.

Last night was Broadway night at Casa Bella. Kate’s confusion continued. She was seated beside the woman whose mother started the restaurant almost 79 years ago. We sit with Signora Rizzo and her husband for all the music nights. We hadn’t been there too long before Kate leaned over to the Signora and said, “What’s the name of this restaurant?” Everyone at the table is aware of Kate’s diagnosis, and Signora Rizzo responded beautifully. She told Kate the name of the restaurant and that her mother had started it. She also gave her a little of the restaurant’s history. Kate was surprised and interested in what she had to say.

I’m not sure why, but it took longer to get our meals last night. Several times after we had ordered, Kate asked me if we had ordered and when we were going to eat. Finally, she said, “Does this place serve food?” Signore Rizzo, who was seated beside me, said, “I was wondering the same thing, Kate.” We have always enjoyed sitting with this couple. The way each of them responded to Kate last night is consistent with the kind of people they are. I hope we have many more music nights together.

These little public incidents of Kate’s confusion are trivial. No one was embarrassed or disturbed, but they do make me wonder what lies ahead.

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Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

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Catching Up

I observe so many examples of “Living with Alzheimer’s” these days that I forget to document them for the blog. That’s a special problem when we have very active days as we had over the weekend. With our trip to Nashville on Saturday and a play yesterday afternoon, I failed to note several things.

One of those occurred yesterday morning. I thought it was noteworthy because I had written a post the day before in which I said that Kate almost always recognizes me as someone she knows and trusts. That wasn’t true yesterday. We were going to a play at 3:00, and I wanted us to have lunch without rushing, so I woke her about 10:30. I began by playing some soft music. Fifteen minutes later, I went in to see about getting her up. When I did, she looked at me strangely, and said, “Who are you?” I asked if she meant how we are related. She nodded yes. When I explained that I am her husband, she was surprised. Then I said, “You do recognize me as someone you know and are comfortable with, don’t you?” I expected her to answer yes, but she didn’t. Instead she said, “I don’t know.” Then I went in another direction. I said, “I am Richard Creighton, and I care about you very much. I’d like to take you to lunch. Would you like that?” She said, “Where are my clothes?” I said, “I’ve got them right here for you on the chair. Wouldn’t you like to take a shower before you dress?” She said, “Where is it?” I said, “It’s right over here. Let me show you.” Then I helped her out of bed and walked her to the shower. From that point on, everything went well. At lunch, she even used my name one time. Interestingly, I don’t recall her asking my name or hers the rest of the day.

One of the lessons I am learning is that explanations don’t seem to have the same power or effect that experience does. This is true for everyone she meets, not just for me. If I tell her we are going to have lunch with someone, she almost never knows who I am talking about. If I give her a little information about how we know them, that doesn’t seem to help. Once we are with them, it appears that she picks up more powerful clues. It’s her intuitive abilities that help more than her rational ones. I am sure that the longer we are with them, the more comfortable she feels. In an hour she picks up more information. This doesn’t mean that she remembers their names. It means she “senses” that they are people she knows and is comfortable with. The same thing seems to occur when she looks at photo albums. At first, she may not recognize some of the people. The longer she spends with the album, the better her recognition.

This discussion of recognition reminds me that she continues to have problems recognizing our house as “our” house. I noted above that she asked where the shower is. It is very common for her to ask where the bathroom is. She continues to want to follow me when we walk into the house, but not always. She also continues to confuse our house with a place we are staying while out of town. For example, after we got home from Nashville the other night, she asked if we were going to sleep here. I believe that is what she was thinking last night when she whispered my name and motioned to me to come over to her. When I got closer, she whispered, “Could you get me something to wear to bed?” I noticed that she had also closed our bedroom door. Earlier she had closed the door to the family room.

Something else that I noticed over the weekend is that she had some very talkative moments. One of those occurred Saturday night, after turning the lights out, she started talking about her mother and how much she helped other people. By itself that would not be unusual, but I was struck by some of her observations about people in general. She said that people have lots of different kinds of problems and generally don’t feel comfortable talking to others about them unless they are people they trust. She explained that her mother was that kind of person and could listen without being judgmental.

She was also talkative at lunch yesterday. Some of that involved teasing me. I said something about her birthday which is today. She asked how old she would be. When I  told her, she asked how old I am. I said, “I’m 78, but I could pass for 50.” (Joking, of course.) She laughed and said, “Have you looked in the mirror lately.”

Her appreciation of comedy has never included slapstick or farce. Yesterday we went to see Arsenic and Old Lace at one of our local community theaters. It’s a farce from beginning to end. She didn’t enjoy it. It seems like most of the local productions are musicals. She can appreciate them because of the music. I don’t think I will get tickets to another play. They demand too much of her. That’s not a great sacrifice. There are plenty of musicals.