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Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”

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This Morning

I woke up at 4:30 this morning and couldn’t go back to sleep. At 5:10, I decided to get up. I like to get up at 6:00 or shortly thereafter, but I got up at 5:00 or 5:30 most of my working life, so it’s not such a bad thing.

After I was dressed for the day, I put a load of clothes (mostly towels) in the washer and was about to fix my breakfast when I realized I had forgotten to bring Kate’s iPad from the bedroom to charge it. When I walked into the bedroom, I saw that she was awake. I walked over to her and could tell she was having one of her moments of confusion. It fell short of what I would call an anxiety attack but more serious than her usual confusion.

I said, “Good morning. Could I help you?” She said, “I don’t know. Where am I?” I told her I had good news, that she was in her own home where we live. She said, “Huh.” I told her again. She said, “Who are you?” I said, “My name is Richard, and I can help you with anything you need.” She said, “What am I doing here?” I said, “This is your home. You live here.” She said, “What do I do now?” I said, “It’s early in the morning. I think you should go back to sleep.” Once again, she asked my name, where she was, and what she should do. After telling her I thought she should go back to sleep, I asked if she would like me to stay with her. She was relieved to hear me say that and said, “Oh, yes.”

I went back to the kitchen where I poured myself a glass of V8, and a cup of granola, picked up my laptop, and iPad and took a seat beside her side of the bed. I put on some soft music. She was asleep in less than fifteen minutes. I was just beginning to think about going back to the kitchen when Kate said something. I didn’t understand and got up and stepped closer to her.  She pointed to my shirt and said, “Do you want to take that with you?” I told her I did and sat back down. I have no idea what prompted her to ask me that, but she seemed very much at ease. I felt relieved. I stayed a little longer to make sure she was asleep again. Then I moved back to the kitchen. I finished the granola and V8. That will be my breakfast instead of the eggs I usually fix.

At 7:20, I heard Kate’s voice on the video cam. She said, “I wanna get out of here.” I rushed to her bedside. She was smiling. I told her I loved her and she said, “I love you too.” I asked if she was all right. She said she was. Then I mentioned the time and asked if she wanted to rest a little more. She said she did. I told her I would be in the kitchen if she needed me, and I left. It was a dramatic change from just over an hour before, but a change I like to see. Her saying “I wanna get out of here.” didn’t match the way she seemed when I got to her, but it isn’t unusual for her to say that. In fact, just yesterday, she expressed it rather emphatically. I’ll save that for a later post.

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A Surprising Conversation This Morning

Kate woke up at 4:30 and again at 5:30 this morning. In both instances, she tapped my arm and softly said, “Hey.” One of those times (I can’t remember which) she said, “Is the party over? Are they still here?” I explained that we were the only ones in the house but didn’t say much more as I didn’t want to encourage an extended conversation at that time. At 5:50, I decided to get up. She was still awake. I told her I was going to get dressed and then get breakfast.

I was just about to take my omelet out of the pan a few minutes before 6:30 when I heard her voice from the video cam. She said, “Hey.” Before I could take the pan off the stove, she called again. When I got to her, she had a big smile on her face and looked wide awake. I asked what I could do for her, and she asked me to sit on the side of the bed. I did. She acted like I was an old friend she hadn’t seen in a while. She asked what I had been doing. I told her I was just fixing my breakfast. Then I answered her in the way that I might have responded to a friend who had asked the same question. I told her about my daily routine minus the caregiving and blogging parts. I mentioned things like exercising at the Y and meeting friends for coffee. When I said something about my involvement with United Way. She said, “What’s that?” I told her about some of the United Way programs. That sparked a conversation that lasted forty-five minutes before I went back to the kitchen to fix another omelet.

The conversation shifted from my telling her what I did to my being the facilitator. She was very talkative. As usual, she was quite repetitive. The major themes were the many needs of people, the ways in which we can help, and the fact that both the giver and receiver benefit. Despite the repetition and stumbling on specific words and phrasing of what she wanted to say, she was remarkably coherent. She talked about the benefits that organizations can play in managing programs like homeless shelters and soup kitchens. I brought up the role that churches can also play in such programs. She also mentioned how individuals could make a difference doing things like preparing food for a family experiencing illness or just inviting someone to lunch.

I was fascinated by hearing what she had to say, but I was also thinking about my breakfast. I was hungry, and she seemed so wide awake that we could go on a long time. I told her I was feeling the need for a little breakfast. She suggested I go ahead. We talked briefly about what a nice conversation we had had. I asked what she wanted to do. She said she thought she would rest a while longer. It’s been a little over an hour. She is still in bed. I’m not sure what to expect next. This is a day for the sitter. I hope she will get up without my having to wake her. That always makes getting up a little easier.

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Miscellaneous Interactions

Yesterday morning I helped Kate to the bathroom and back to bed. She was most appreciative. As I pulled the covers over her she thanked me and said, “I think I could marry you.” I said, “I love you.” She was excited and said, “You do?” I kissed her on her forehead and told her I would be in the kitchen if she needed me. She smiled and closed her eyes.

A number of times I have mentioned that she likes to pull strands of her hair when she rests or when she retires for the night. This can go on quite a long while. Recently, she has tried to make me a partner in efforts. At first, she just wanted me to watch what she was doing. She would explain it as I watched. Then she started asking me to pull her hair. I have tried to get out of it but given in on a couple of occasions. Last night she asked me to pull from the side and back of her head. Instead of doing it with my fingers, I used one of her hairbrushes. That worked fine.

When I finished, she went back to doing it herself. In a few minutes, she wanted me to look more closely at what she was doing. I got up from my chair and walked over to her. She said, “They were getting used to her and that they weren’t afraid anymore.” As she continued to talk, I couldn’t tell whether she was talking about bugs in her hair or the hair itself. I did learn that she has been trying to pull the strands of hair very slowly so as not to frighten them. I played along with her and didn’t act like I thought what she said was strange at all. This is not the first time I have observed her seeing or believing “things” were around or on her. She often sees confuses spots on a restaurant table or on pavement and talks about them as though they are alive.

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Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

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Early Morning Conversations

Day before yesterday, Kate was awake around 3:30. The same thing happened this morning shortly after 4:00. Both days we had the kind of conversation that I have reported on before. She went through the usual questions. “Where am I?” “What’s my name?” “Who are you?” She did not seem anxious at all. In fact, this morning our conversation began when I heard her laugh. I asked what was funny. She said, “The two of us are just lying here.” I’m not certain why that was funny. She didn’t say, and I didn’t ask. I find that asking “why” questions is always unproductive. She can never come up with an explanation though she sometimes says, “I don’t know.”

Both conversations were very repetitive. By that, I mean that she asked the same questions very closely together over and over though not in rapid-fire succession. They were very relaxed the way you expect for a conversation in the middle of the night. Here’s an example.

Kate:              “Where am I?”

Richard:        “You’re right here in our home. This is where we live.”

Kate:              “Oh, good. <pause> Where am I?”

Richard:        “This is our home. We live here. We’ve lived here for twenty-two years.”

Kate:              “Oh. <pause> Where am I?”

During the conversation, I also mentioned that we live in Knoxville and that we have lived here forty-eight years. Several times she also asked her name as well as mine, but her focus seemed to be on her immediate surroundings.

We talked about forty-five minutes night before last, not as long last night. Each conversation ended when she gradually stopped talking and went back to sleep.

The repetitiveness of her questions is an indication of just how short her short-term memory is at this stage. I have also noticed it in other situations. Sometimes her memory works as though it is controlled by a switch that turns off right after you tell her something. Other times it is like the switch is turned on and off again quickly. For example, yesterday we looked at a few family photos on our entertainment center. She pointed to one of her mother and said, “That’s my mother.” She looked at the next photo of her grandfather and asked who he was. I told her. Then she looked back at the picture of her mother and asked, “Who is she?” We had just seen the picture of her and her brother on the cover of her “Big Sister.” She recognized herself immediately. A few minutes later. we looked at the same picture on the entertainment center, and she didn’t recognize herself. Similarly, she will know my name one minute and not the next. It’s just another mystery of the way the brain works – or doesn’t.

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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.

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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.

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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.

Kate:  I 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.