An Update on Eating Out

As I have expressed in other posts, a variety of things have played a role in how well Kate and I have gotten along through six of the seven stages of Alzheimer’s. I believe that nothing has been more important than our eating out for lunch and dinner. That has kept us socially active without having to depend on our friends. Of course, some of our eating occasions are with friends, but we almost always dine alone. There are notable exceptions like our three music nights a month at Casa Bella when we sit with two to six others. In addition, we met a couple at these music nights with whom we eat on other occasions at least once a month.

Now that she is in the last stage of Alzheimer’s I see more signs that her symptoms could ultimately be a bit of a problem with other people. For quite a long time, she has been a “messy” eater. She is even messier now. She regularly drops food on the table, the floor around her, and, of course, her clothes. When her meal includes items that she doesn’t like, she often takes them out of her mouth and puts them on the table. If we are sitting close enough, I reach over and put them on my plate, in a paper napkin, or another appropriate place.

I have gotten rather accustomed to her frequent use of her hands rather than a fork which is especially common when she eats a sandwich. She almost always takes it apart and picks up the various pieces (cheese, tomato, or meat) with her hand. Depending on the amount of sauce or other condiments, that can be messy.

At lunch on Saturday, she did something she hasn’t done before. Our server brought us a piece of cheesecake. After she placed it on the table, I asked her a question. She started to answer when I noticed that she was looking at Kate. I looked at her and saw that she had picked up the whole piece, taken a bite out of it, and placed it back on the plate. This was not a problem for either the server or me although the server was surprised. She is aware of Kate’s diagnosis and is very understanding; however, it is only recently that she has had the opportunity to witness some of her symptoms. Things like this do make me think about what might lie ahead.

There are also times when I say or do something that bothers Kate, and she snaps back at me. The other day at a restaurant she placed her sweater over the back of her chair. It apparently didn’t feel right when she leaned against it. I asked if she would like me to put it on the back of an empty chair beside us. She looked like she didn’t quite understand me, and I reached over and took the sweater from her chair. I don’t remember what she said, but she quickly gave me a sharp response as the server approached our table. I apologized to Kate and put the sweater back. It turned out that she was then embarrassed to have spoken to me like that. She had tears in her eyes and said to the server, “I’m sorry. I shouldn’t have said that. I want you to know that I am not usually like that.” That is very true, and I suspect the server recognized that as well. She has served us many times in the past few years and never observed anything like that before.

I believe that all our servers and the people with whom we eat are also understanding, but I wonder if there is a limit to which I should go in putting Kate in situations where some might not feel the same way. For the moment, I am optimistic that we will be able to continue eating with others for quite a while; however, I am going to be watching very carefully to sense what is best in the future.

Last night at Casa Bella we encountered an entirely different kind of situation that was a lesson learned for me. Two months ago, we learned they were sponsoring a special Italian dinner that occurred last night. It sounded like the kind of event we would enjoy, but I was concerned about two things. First, all seating was to be outside in the street in front of the restaurant. Kate is very sensitive to heat, and September can still bring hot weather. Second, I wasn’t sure about the seating. Big crowds are confusing for Kate, and I didn’t want to be seated with a group of strangers that might add to her confusion. On the other hand, I wanted to support the owners whom we have come to know the past few years. I talked with them and learned that we would be seated with the same people with whom we normally sit. I decided to take a chance and attend.

As it turned out, I wish I hadn’t. It was 90 degrees when we arrived and didn’t drop a lot during the meal though it felt better after the sun went down. The gnats were there in abundance as well. The benefit of being seated with our regular couples was offset by the noise level. The tables were under a large tent to protect from the weather, but I think that contributed to the noise. It was very difficult to converse. Everyone was asking everyone else to repeat what the other person said. Kate remained quiet except to make noises associated with gnats that periodically flew in her eyes.

Given all of this, Kate took it quite well, but I could see I had made a mistake in deciding to come. I was glad we hadn’t shown up for the cocktail hour that preceded the dinner. We were the first ones to leave shortly after finishing our meal. I have been very careful to avoid situations like this in the past. I should have done that this time.

An Update on our Morning Conversation

About 8:45, I heard Kate say, “Hey” and noticed that she was about to get out of bed. As I walked to her bedside, she had the happiest smile that I have seen in quite a while. She moved over so that I could sit on the edge of the bed, and we engaged in another conversation that lasted almost thirty minutes before she wanted to get up. She was unusually alert and very cheerful. She must have been lying awake for quite some time before calling me.

I told her it was a beautiful morning and mentioned the pink flowers of the Mexican Heather in a flower bed near the pool. She seemed to like hearing about them but was too comfortable lying in bed to get up to look. Then she started a conversation about everything that “they” (I’m not sure who) had done with “all this.” I thought she was talking about the people who built our house, but she started talking about our ancestors (my word, not hers) and the difference in our world today because of the sacrifices they made. She picked up on a theme that has been rather frequent in the last year or two, the equality of women. Her emphasis was less on the role that men have played in keeping women “in their place” than simply recognizing the contributions of women in history and the present. Some of that involved farming and the lives of both men and women when most families were farmers. We talked about education and the fact that women outnumber men in college and are a majority in a number of professions previously dominated by men. We both agreed that we are happy to be living in this particular time period, a view that seems to be typical of many people in every generation.

After a while, I asked if she wanted to get up or stay in bed a little longer. She was ready to get up. We went to Panera arriving about 9:30. She had a muffin and worked on her puzzles. I checked email and started on this post. A few minutes ago, she looked up at me. She looked surprised to see me and said, “Who are you?” I said, “I am Richard. I am your husband. She didn’t say anything but went back to her puzzle. I said, “You don’t look too excited that I am your husband. Should I have said, ‘I am your very good friend, Richard?’” She gave me a smile and said, “Yes.” I said, “Well, that’s who I am.” She said, “Good” and then went back to her puzzle.

Our Conversation This Morning

At 6:30 this morning as I was finishing up in the bathroom, I heard Kate say, “Hey.” I went to her bedside and asked if there were something I could do for her.

Kate:              “I want to go to the bathroom.”

Richard:        “I can help you with that.”

Kate:              “Where is it?”

Richard:        “Let me help you up, and I’ll show you.”

When she stood up, I took her hand.

Kate:              “Boy, am I glad you’re here.”

Richard:        “I’m glad to be here with you.”

As we reached the bathroom, she wanted to shed her overnight underwear.

Kate:              “This is no fun. I know it’s not for you either.”

When she finished, she went to the sink to wash her hands and brush her teeth. Then the conversation continued.

Kate:              “Richard, I’m so glad you are here. You take such good care of me.” (We embraced) “I wouldn’t know what to do without you.”

Richard:        “And I don’t know what I would do without you.”

Kate:              “What’s your name?”

Richard:        “Richard, and I’m your husband.”

Kate:              “Oh. What do I do now?”

Richard:        “It’s still early. You can go back to sleep if you want.”

She did, and we walked hand in hand back to bed.

Kate:              “Thank you. You know I can’t live without you.”

Richard:        “I love you and will always take care of you.”

Kate:              “You already are.”

During our entire conversation, she never displayed any sign of anxiety or panic. She was, however, feeling insecure and grateful for my help. The way she acted it sounded like a rather clear understanding that she has a serious problem and views me as someone she can trust to care for her. We talk about our love for each other all the time, but in this moment it seemed that each of us fully recognized our situation for what it is.

Music and Rest

Even though I believe so strongly in the power of music, I am still occasionally surprised by experiences with Kate. Day before yesterday, she did two things that I didn’t expect. The first occurred as we were about get into our car after lunch. I told Kate I loved her. I have no idea why, but I immediately thought of that old song “I Love You a Bushel and a Peck.” I can’t remember the last time I heard it. It certainly isn’t a song one hears very often.

When I got in the car, I googled it and pulled up a rendition by Doris Day. After she had sung the line “I love you a bushel and a peck,” Kate sang the following line in sync with the music – “A bushel and a peck and a hug around the neck.” Of all the names of people, places, and things that have been lost in her memory, how did this one pop into her mind, and so quickly? I thought for a moment. Then I asked myself if this was any more puzzling than my remembering the song itself when I said, “I love you.” I’ve said that thousands of times without making that connection. Why did I make it this time? We have so much to learn about the brain.

The other incident occurred the same day. We were in the car, and “If Ever I Would Leave You” was playing. It wasn’t long before she said, “I would never leave you.” I took note of her remark because of her emotional experience with another song that was sung at Casa Bella last week. I had wondered to what extent she was able to make a connection between the words of a song and our own relationship. My guess was that she was moved by the music and lyrics but probably didn’t make a connection to us. I still think that. On the other hand, this week’s experience let’s me know that she is able to process more of what is said than I usually believe or report in this blog.

I have, however, noted that she often gives evidence of rather keen insights concerning what is going on around her and between the two of us. I take these experiences as examples of her intuitive abilities, and they continue to work amazingly well. One of those occurred last night as we left Casa Bella. She thanked me for trying to keep her from “making an idiot of myself.” While I always assure her that she gets along fine, she recognizes the many problems she has. Without a memory, she can’t remember all the things each of us does when we are eating out and feels insecure. Sometimes, as she did last night, she worries about how to order her meal. She kept picking up the menu and asking for my help. Each time I told her what I selected and would order for both of us. She was relieved, but she couldn’t remember. She asked for help another 6-7 times before the server took our order. There were a number of other things for which she needed help. It’s hard to imagine the pressure she must feel in situations like this.

Perhaps it is this kind of pressure she experiences throughout the day that is now causing her to rest more. She is making a habit out of resting immediately after we get home from lunch. That happens even on the days she has slept as late as 11:00. The length of time she rests is also increasing. After lunch, she sometimes rests until time for us to leave for dinner. In addition, two nights this week she has gone to bed shortly after 7:30.

The good news is that she continues to be happy even in situations like last night. I believe it is good for her to get out despite the challenges. I am hopeful about continuing a while longer.

A Happy Moment This Morning

For the second day in a row Kate was up early. Yesterday she was ready to get up around 9:00. Today it was only 7:30. This was one of those mornings she clearly did not realize she was in her own home or my name or relationship. Perhaps because she didn’t know who I was, she wasn’t quite as eager to have my help. Several times when I tried to help, she said (in an unflattering way), “You think you know how to do everything.”

She started warming up to me as I helped her dress. Entering the family room provided the catalyst she needed to feel better about the day. I walked with her around the room as we looked at the flowers inside and out. I told her I wanted to show her something and walked her to a photo of our son when he was about eight. She always loves this picture. Today was no exception. When she asked who he was, I told her he was our son. She reacted to the word “our” and said, “No.” I said, “Well, he is your son.” That was better. I also showed her a picture of her father.

From there we went into the kitchen where I had set out her meds. After she had taken them, she noticed a card on the island and asked what it was. It was a card from her P.E.O. sisters. I had shown it to her last night, but she had forgotten. I read it to her along with the handwritten message inside. She was touched, and tears filled her eyes. She loved the beauty of the cover page that had three hearts on it as well as the tender message itself and asked if she could take it with us. I told her that would be fine. It was still a few minutes before we left, but she held the card in her hand and admired it. She asked several other times if she could take it with us.

Once we were in the car, she held it against her breast and said, “I’m going to keep this forever.” She kept talking about how beautiful it was. As we walked from the car to Panera, she held it carefully in her hand and told me once again how much she liked it. I said, “I love you.” She said, “You know what I think. You’re a good guy, and I think I’ll learn to love you too.”

We took our table at Panera, and  she carefully placed the card standing upright so that she could look at it while eating her muffin and working on her iPad. A short time later she picked up the card and looked at it again. Knowing she wouldn’t be able to read the note, I asked if she would like me to read it for her. She did. When I read “Dear Kate,” she said, “How did they know my name?” I explained that she had been a member for many years and had served as president. She had no memory of that at all.

Incidentally, the blueberry muffin was also a big hit this morning. It was like this was the first time she had every had one. Thirty minutes after finishing it, she wanted something else. I asked if another muffin would be all right. She beamed. Thus far, the morning has been just another Happy Moment of many that she and I experience. She remembers very little, but she is not “suffering.”

Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

Just Wondering

Yesterday morning I was happy to see Kate smile when I woke her for lunch. I told her it made my day to see that smile, and she beamed. Then I told her I would like to take her to lunch. As she started to get out of bed, she wanted to do it on her own without any help from me. Once she was on her feet, she had second thoughts. She extended her hand for me to guide her to the bathroom. It was the kind of moment I felt as though she knew my name and our relationship. Then she asked who I was. I gave her my name and said that I was her husband. She didn’t believe I was her husband, and I said, “Well, let’s say we are friends, very good friends.” She liked that. The balance of the day there were moments when I was sure that she knew me as her husband but many when she did not. She responded to me the same way regardless. In addition, she continued her expressions of appreciation for my taking care of her.

As I reflect on the day, I would say it was a very good day. She was just as confused as ever, but she was happy. What’s more I was happy along with her. I know, however, that many people would not understand this. For example, before Kate got up yesterday, I made up a Rotary meeting I had missed two weeks ago. As I watched from my computer, one of the club members gave an update on several older members and noted that one of them was “suffering with Alzheimer’s.” That is a frequently used way to say that  someone is “living with Alzheimer’s” or simply “has Alzheimer’s.” I know the speaker is probably not in touch with how the “Alzheimer’s community” (all people with dementia as well as those who are caregivers or professionals in the field) is beginning to talk about the way we refer to the disease. Many of those with dementia as well as professionals advocate our dropping the word “suffering” when we say that someone has the disease because it can be very misleading.

Speaking for myself, I find “suffering” not to be a good descriptor of Kate’s experience. There is no denying the changes in our lives that I wish hadn’t happened. Most of all I hate those moments of anxiety, fear, or panic that she has sometimes experienced. I feel similarly about all the moments when she recognizes that “something is wrong” with her. I wish she had never had Alzheimer’s, but that is clearly out of my hands.

The only thing that she and I can do is make the best of it, and I believe we have done that. We have kept our focus on what I call our Happy Moments. We take great satisfaction in them and try to put aside the sad ones; therefore, describing our lives as “suffering” doesn’t seem accurate at all. I do, however, wonder about the future. I’m not at all sure exactly what it holds for Kate or how I will respond. I am encouraged by the fact that each of us has been able to adapt thus far. I also know that my father managed well and took care of my mother to the end. He experienced a good bit of stress, but my load is and will continue to be easier than his because I have help and plan to increase it as needed.

Even if this last stage brings with it more sadness than happiness, I believe that saying someone is suffering from Alzheimer’s is not an accurate generalization. I think the emphasis on suffering can be discouraging to those who are recently diagnosed at a time when they need encouragement. The truth is that it is possible for a couple to live happily for years before they encounter the most challenging aspects of the disease. Based on the accounts written by other caregivers, I suspect that some of them may have received the diagnosis late in the disease. That left them with a shorter period of the “almost normal” years. During those years they no doubt realized they were happy but not that they were living happily with Alzheimer’s.

Lest I be guilty of making my own inaccurate generalizations, I should acknowledge that there are a variety of different types of dementia. Each can have different symptoms and time frames. In addition, there are differences from person to person within each type. I suspect suffering with dementia can occur among all types, but I think it is not usually an accurate description of the whole journey for those living with dementia. Furthermore, there are individual differences among caregivers in terms of how we perceive our situations. I admit to being the kind of person who sees the glass as “half-full” rather than “half-empty.”

An Early and Cheerful Start to an Emotional Day

Kate got up on her own about 9:30 yesterday morning. She didn’t seem groggy at all and was quite cheerful. I took advantage of the occasion and got her to shower. That’s not something she usually wants to do, but she always likes it once she is under the water. As I helped her dry off, I joked that this must be like having her own personal spa service at home. She laughed and said, “That’s something I like about you. You have a sense of humor.”

Her good humor did not indicate a lack of confusion. As she was putting on her shoes, she pointed to the carpet and said something about her mother. I didn’t know what she was talking about, but it sounded like she saw her mother on the floor.  It turned out there was a white spec on the dark blue carpet that bothered her. I think this was one of those instances in which she just couldn’t think of the correct word. How she made a connection to her mother is a mystery.

Because she was up earlier than usual, we had a little time before we needed to leave for lunch. I decided to make use of the time by showing her pictures of her family. We began in the hallway outside our bedroom where we stopped to look at those of her grandmother and mother. I tell her the same stories each time. She is always surprised and interested. She almost always guesses that the picture of her mother is her own photo. That is not something limited to this particular picture but others that we see in her various family photo books.

As I talked about her mother, she became very emotional. She was, as usual, struck by her mother’s smile and her eyes. Despite her interest, I gave her more information than she could take in and said she thought we should move on. Then she did something I have not seen her do before. She said goodbye, touched her fingers to her lips, and placed them on her mother’s face. Her feelings for her mother are even more intense now than ever. I got the sense that she thought we were in her family’s home in Fort Worth. I guess she was thinking that we were leaving to return to Knoxville. She wanted to take the picture with us. I was about to tell her she could when she said, “Maybe this is a better place for it.” I agreed.

We still had another thirty minutes before we needed to leave, so I brought her to the family room where we looked at a photo of our daughter’s twins when they were six or seven. I suggested we sit on the sofa where I could show her the photo book of her mother’s family. She was immediately taken by it and was very emotional as I told her the names and read her the text that accompanied the photos. We didn’t get further than a few pages because she was getting too much information, and it was close to time for us to leave. She said something she has said a number of times before. As I was reading the text, she asked me to write this down so that she could have it for the album that she wants to make. It always seems strange to me that she wants me to write it down when it is already so nicely summarized in her books. Of course, I am looking at this as someone who does not have dementia.

Before leaving for lunch, she thanked me for bringing her here and commented on the many experiences we had had in this place. I am making this sound more straightforward than it really was. She couldn’t find the words she wanted. I guessed what she was trying to say, and she agreed with my interpretation.

Her emotions were obvious in several other ways at the house and the restaurant. I gave her a little mouthwash but didn’t tell her not to swallow it. I think this was a first for me, and, usually, she is insulted when I tell her. This time she swallowed it. Fortunately, it was not Listerine. She doesn’t like that and would have reacted strongly. This was a Colgate product that does not contain alcohol, so it didn’t bother her at all. When she swallowed it, I reflexively told her she shouldn’t do that. She responded emotionally with tears. This time because she had done something wrong. As with other things, she is also mindful of and very sensitive about doing the right thing. I think that is what is behind all of her questions when we are eating out. She doesn’t like to make mistakes but knows she makes a lot of them.

When we arrived at the restaurant, our server rushed over to give her a big hug. Kate was overcome with emotion and was teary all the way to the table. As we talked during our meal and in the car on the way home, she had teary moments as we talked about our marriage and children. In keeping with her growing insecurity, she expresses her expressions of appreciation for helping her. There is no question but what she recognizes she needs help and that I am the primary person who provides it.

She surprised me after lunch. She didn’t say anything about wanting to rest. She sat down with her iPad and started working jigsaw puzzles. She did need occasional help, but she worked three and a half hours without a break. She still showed no sign of wanting to rest. It was a high energy day which is very unusual. The battery on her iPad was exhausted before time for bed.

She was very talkative during and after dinner although I could not understand everything she said. In fact, I understood very little. When we adjourned to our bedroom for the day, she worked on her iPad, but her mind was on something else. The night before and last night at dinner it was clear that she thought we were having company at the house. It sounded like a big event. She had asked me if I had taken any pictures of the people the night before. I told her I would get them later. Last night she wanted to know if I had the camera ready. After a while, she asked if I had taken a picture of her. I told her I hadn’t but would be glad to do that “right now.” I picked up my phone and took it.

The one thing I could understand was her strong sense of insecurity as expressed in her exaggerated words of appreciation for me. I don’t ever recall a day in which she so frequently thanked me and expressed her feelings for me. At no time during the day did she act in the least way irritated with me.

All of her behaviors are indicative of how much she has changed over the past few weeks or months. Despite recognizing this change, I felt good about the day. She was unusually happy, and I was able to deal with her moments of insecurity. I find that I tend to be sad as I look to the future. “In the moment” I almost always feel good. The hardest thing for me to deal with is her moments of anxiety. Fortunately, they don’t occur often and are short-lived.

Hallucinations and Delusions

Hallucinations and delusions are common among people with dementia. Kate is no exception, but I often find it difficult to distinguish between the two. I know that hallucinations are sensual experiences that feel real but are not. Delusions are false beliefs that occur when there is no evidence that they are correct.

Applying those general definitions to specific incidents is not always easy. For example, Kate often believes she is some other place when she is home. Most frequently, that involves her believing our house is some type of lodging like a hotel and that there are other people staying here. When she wakes up, she often says, “I want to get out of here.” I think of this as a delusion because it is a false belief. On the other hand, that must occur because she has had a sensual experience that she doesn’t recognize as our own house. When I point out a few things like our backyard (that is, giving her evidence that is to demonstrate it is our house), she realizes she is really at home. That sounds more like it was an hallucination.

As I was about to get out of bed yesterday morning, she asked, “What do I have to do today?” I told her it was a day without any special obligations, that she could relax and do what she wanted to do. Then she said something about having to give a talk someplace. I told her I didn’t know about anything like that and suggested she may have had a dream. She reacted quickly and strongly saying, “It was not a dream.” I didn’t pursue it further. After I was dressed and about to go to the kitchen for breakfast, she brought up the subject again. This time I knew what not to say. Again, I told her it was a day when she could relax. When she asked about her “talk,” I said, “I think that’s tomorrow. You don’t have to worry about it right now.” She was relieved.

Most of her hallucinations/delusions are like those I just mentioned; however, this past Tuesday afternoon she (and I) had an experience that was a first. She had been resting on the sofa of our family room for about two hours while I was seated across from her. She fell asleep for a short time. Then she awoke and saw me. She had a big smile on her face and greeted me like someone she knew, but not as her husband. She began a conversation that made me think she was not really awake but dreaming.

I went over and sat beside her. She said, “Are you from around here?” I told her I was. Then she said, “Well, how familiar are you with what is going on?” I told her I wasn’t familiar at all. She said, “Oh, then I better start from the beginning and tell you about myself.” That led to a thirty-minute conversation during which she did most of the talking. Her aphasia was quite evident. She struggled for just the right words and how to tell her story most clearly. She would start out and then get confused. Then she would start over. I recorded a short portion that occurred about fifteen minutes after our conversation began. I transcribed the section below as she tried to explain “things” to me.

Kate: What is interesting to me is how quickly we can get in and out here. <pause, reaching for the words> Yeah, I can’t just get over with what you can do with <pause, reaching for the words> uh, with, well, you know with what. (She laughed.)

Richard: Well, you seem very happy. You don’t seem like you have a problem.

KateI don’t have a real problem, but I do get discouraged sometimes. Just because. Let me see. <pause, reaching for the words> All right. <pause, reaching for the words>

Richard: You get discouraged? For what?

Kate: Oh . . . Oh. <pause, reaching for the words> just little things, you know. and the big things I take pretty well. And, uh, there’s a guy that I had never met before, but he’s a nice guy. Are you familiar with around here?

Richard: A little bit.

Kate: Well, OK. Um. I’m from Fort Worth, Texas, and um. <pause> And my family was religious, and uh, but anyway, I, I, uh grew up in the church. So <pause>, reaching for the words> But, ya’ know, all of these things have changed.

Richard: In what way?

Kate: (She laughed and called me for help.) Richard. <pause> Richard! <pause> Richard!! <longer pause> Richard!!!

Richard: Who are you looking for?

Kate: That’s my . . . <pause>

Richard: Who is that? <no response> You were about to say?

Kate: He’s with us.

Richard: Richard?

Kate: With this church.

Richard: Richard is with the church?

Kate: Who?

Richard: You’re saying somebody is with the church.

Kate: Oh, yeah.

Richard: Who is that?

Kate: Oh, a lot. <pause> (She laughed.) We do. This is a little hard for get around here, but, uh. Anyway, let me start with me. I grew up in this right <pause> this big area.

Richard: You grew up around here.

Kate: And, uh . . . (She laughed). There were in the area in which all my friends grew up with we all went to school. You know some get out way . . .

I think that should give you an idea of the conversation. She called for me again, and I told her I would go get “him.” When I walked back into the room, I greeted her as though I had not been in the room with her moments before, but I didn’t give her my name or tell her I am her husband. She seemed to recognize me, and I suggested we go to dinner.

I’m not clear on whether she was having an hallucination or a delusion or both. Maybe it’s best just to say she was confused. That is clear, but what prompted it? That’s another thing I’ll never know.