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A Strange Experience Last Night

As I reported in a previous post, Kate and I had a great time yesterday morning. Reading and taking a tour around the house was fun for both of us. When the sitter arrived, Kate acted glad to see her. Although she did want me to go with them to lunch, she didn’t show any uneasiness at my leaving for Rotary.

When I arrived home, I expected to see her resting on the sofa. Instead she was seated on the sofa across from the sitter who told me that Kate had been very talkative while I was gone. I don’t know how long they talked, but I got the impression it was a long time. I didn’t ask what they talked about. Last night I got a taste of this myself.

I got Kate ready for bed before I took my shower. Just after I got out, Kate opened the door to the bathroom. I was surprised that she was up and asked if she needed to use the bathroom. She said she was looking for the girls. I had no idea what she was talking about. I do know that once in a while she believes we either have company in the house or that someone is coming to visit us. I told her we were the only people in the house.

Then she began a conversation that last more than forty-five minutes, fifteen in the bathroom and another thirty in the bedroom where she asked me to sit in a chair while she took a seat on the bed a couple of feet away. She stumbled over her words so much that I couldn’t everything she said. I was able to make some sense of what she was communicating but not what motivated her to do so.

She thought she was in Texas and a member of a group that apparently had been all women but now included men. She talked about being on a committee that was charged with identifying women who might become new members of this “group” (club?). I gathered that the group might be a “leadership” organization of some type because she talked a lot about the quality of the women who had recently joined and the prospects who were being considered.

As she talked, she asked me if I knew “Richard.” I told her I did. She said, “He’s a nice guy. You would like him.” She went on further to talk about him. She said, “You might say ‘He’s my . . . She paused as she looked for the right words. I was eager to see if she would say “husband.” She said, “guy.” Then she added, “He might even be the one I marry.” She continued talking about her club and mentioned “Richard” several other times but couldn’t recall the name and didn’t for the remainder of the conversation.

She only stopped her conversation because I mentioned that I was going to get ready for bed. I got her in bed and told her I would be in bed beside her. As I said this, I wondered how she would react to that since she obviously didn’t recognize me as Richard. Would she think it strange that we would now go to bed together? Not at all. We got into bed as we always do except that we didn’t snuggle. I was afraid that would seem too abrupt for her. We slept well without any further conversation except that we had had another good day. Now I wonder what she talked about with Sandy. Was it the same kind of conversation? If so, that must have seemed especially strange to her. It seemed that way to me.

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Friday Lunch Conversation

In my previous post I commented on how talkative Kate was this past week. We had another good conversation on Friday. It was an ordinary lunch at Applebee’s, but it was a time when we both felt the impact of the words we exchanged. We talked about how much each means to the other. We briefly touched on the subject of re-marrying if one of us died. At this point, that is something neither of us can imagine. Each of us expressed our feelings about the other and the difference that made in our lives.

Kate asked me about a number of things. She was soon overwhelmed with information and asked me to stop. She said, “You know I won’t be able to remember. I will have to ask you again.” I told her I would always be there to answer any of her questions. I also reminded her of a nickname she had given me in the early years after her diagnosis – “MM” for “My Memory.” It was no surprise that she hadn’t remembered. I would have been surprised if she had.

It was a moment when each of us spoke very candidly. She was clear about not remembering. I was equally clear in my commitment to be with her whatever the future holds. That commitment is an important source of strength for me. I believe it keeps me from dwelling on the sad aspects of living with Alzheimer’s. There is no doubt that caregiving is stressful, but it has its rewards. I think of it as a privilege to care for Kate during this last chapter of her life. Overall, I still believe things are going “remarkably well.”

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Ups and Downs This Week, Mostly Ups

It’s been a busy week. My daily schedule has been interrupted more frequently than in the past. That means I’ve been less regular with my posts. Several times I have started one and not been able to finish because of something else I needed to do. Kate has required more attention than usual, but that doesn’t explain everything. The other things have involved household chores.

Tuesday was one of those days about which I didn’t say anything. I was especially interested in writing about the events of the day as a follow up to Monday when she had a rough beginning. Fortunately, I jotted down a few notes so that I can cover the highlights.

The day started like the day before. Her brain seemed to be “blank.” She was very dependent on me; however, she didn’t appear to be disturbed the way she was on Monday.

I don’t know that my own behavior played a role in the way she responded. I do know that I tried to be more careful in waking her than I had done the previous day. I played a full 20 minutes of relaxing music before going to the bedroom to wake her. When I entered the bedroom, she was awake. I said hello and sat down on the bed beside her. This wasn’t planned or intentional, but I think it may have played a role in conveying a relaxed morning, not a moment when I was eager to get her up.

She didn’t know her name or mine nor our relationship. When I said I was her husband, she couldn’t accept it. As I have done on other occasions, I suggested she think of me as a friend. She liked that. I mentioned a shower, but she didn’t want it. I didn’t push.

I told her I loved her. Though a bit unclear, she responded with what she meant to be “A Bushel and a Peck.” I pulled it up on the audio system, and we sang it together several times. Then I suggested she get up so I could take her to lunch. She got up easily. I had started to wake her with plenty of time for her to take a shower. When she didn’t shower, we were left us with additional time to get ready.

As a result, we got to lunch earlier than usual. She was very talkative and initiated a conversation as though we had never met before. She asked me what I did for a living. I explained that I had started out as a college professor. She wanted to know what I taught. When I told her sociology and social psychology, she asked me to explain. I did, and she said that sounded interesting. I went on to say I ended up with my own market research company. She didn’t know what market research is. I explained that, and she also thought that was interesting.

When I finished, I said, “Why don’t you tell me about yourself.” I knew this might put her on the spot but thought my question wasn’t especially threatening. She handled it well and said, “There really isn’t much to tell.” I told her I knew a lot about her. Then I recounted her academic background and teaching career. I pointed out that she had been a good student and had earned two masters degrees. Then I told her about her volunteer career as our church librarian. She was quite interested and added her own comments.

It had been almost a year and a half since she had had a cortisone shot for the arthritis in her knee. Over the past couple of months, she has complained about it periodically, so we went directly from the restaurant to the orthopedic clinic. She was very childlike throughout the visit but handled herself well. We waited in the lobby for about fifteen minutes. Assuming we might have to wait a while, I took along her “Big Sister Album.” I thought that would occupy her for a longer period of time than her iPad. She enjoyed looking at it and made a lot of comments. There were only a couple of others in the room. I am sure they wondered a bit as they heard me identify all the people including Kate herself as she responded much like a child listening to a parent read a book.

We didn’t wait any longer after going back to one of the examining rooms. We met with two different people. Kate didn’t understand a lot of what was said and asked for clarification. I helped interpret what they said. She never understood, but she was satisfied. As we left, she thanked everyone including those in the waiting room.

The most important thing I should say about the day was that it was one of the nicest days we have had in a long time. I think that relates directly to her mood. She was very happy and quite at ease. Her memory wasn’t any better nor was she any less confused about things like whether we were in Texas or Tennessee, but she enjoyed herself. I couldn’t understand everything she said in our conversations, but she was surprisingly sharp in terms of her understanding about the importance of values and the role of parents in teaching them to their children. She has lost so much of her rational ability that I really enjoy hearing her express her opinions, beliefs, feelings, and values that remain intact. It keeps me in touch with the Kate I have always known.

Recently, especially this week, our lives have vacillated between highs and lows. The highs have been very special, and we experienced them every day. They far outweigh the lows. I know greater challenges are on the way. I am counting on the Happy Moments to sustain us.

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This Morning at Panera

Kate was up this morning at 7:00 to go to the bathroom. She took a shower and then went back to bed. She was up in time for us to make a trip to Panera. As we got out of the car, she said, “Help me. Why do I do stupid things when I’m so (stumbles on the word) I said, “You’re smart.” She said, “Tell people that when I do something stupid.”

We walked in the front door, and she said, “What’s the name of this place?” I said, “Panera.” She repeated it as we were about to walk by a woman working on her laptop. Kate stopped at her table and asked, “Do you know the name of this place?” The woman nodded. Kate started to say the name but forgot it and turned to me. I told her again, and she told the woman. She said this in a childlike way but also very outgoing.

After I had gotten our drinks and her muffin, I took a seat across the table from her. She was unusually talkative. She said, “What’s your name?” I told her. Then she said, “What do people call me when I am with you?”  A short time later she asked again and then said, “Am I your nephew?” When I told her I wasn’t, she said, “You’re not my ____?” I said, “Yes.” She frowned. She brought up our relationship several other times. At least two times she was happy about our being married. Other times she wasn’t.

While there, she asked my name almost as many times as she asks Frank Sinatra’s name at Andriana’s each Sunday.

At one point, she said, “I’m learning my colors.” Then she looked at her gloves and said, “Look. They’re black.” I pointed to the lid of her cup and asked, “What color is this?” She wasn’t sure. I told her it was blue. The lid has a small plastic part on the top of the lid that slides over the hole. I pointed to it and said, “If the lid is blue, what color is this?” She hesitated a moment. Then she said, “Light blue.” I told her she was right, and she was as excited as a child might be.

Throughout our conversation she made references to growing up as though. Once she mentioned her age. I said, “How old are you?” She thought a minute and said, “Thirty or forty. Forty. I’m more mature than thirty.”

We left after she finished her muffin. We walked by a table of women who were there for a meeting of their book club. We know one of them from church and spoke to them briefly. Kate was very talkative. She would have continued talking longer if I hadn’t encouraged her to move on.

As we got in the car, she said, “What would I say if I were introducing you to someone?” I said, “This is my husband Richard.” She didn’t want to accept that I was her husband. I said, “You could say, ‘This is my very good friend, Richard.’” She wanted to drop the word “very” and just say good friend.

On the way home, she talked about our marriage and mentioned my name at least twice. She also commented on my being nice to her. She said, “You’re nice to me. You take care of me.” “You have taught me a lot of things. You’ve taught me to be polite.” Again this was said the way a little child might have said it.

When we walked into the house, she asked my name. It’s a good example of how quickly her brain works and then doesn’t work. It had been no more than two or thee minutes since she had called me Richard. Continue reading “This Morning at Panera”

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Saturday Afternoon Conversation

 

Kate and I had a pleasant day yesterday though she was somewhat confused about where she was for an extended period of time. She also experienced some delusional behavior during the afternoon. Here is a sample of some of the things she said.

As we walked into the family room after lunch, she said, “I remember being here before.”

As usual, she rested and actually went to sleep. She woke up and said, “It’s really nice to be back here.” I said, “Yes, it is.” She said, “You know I was born here, don’t you?”

A few minutes later she said, “It’s a nice place. The owner has done a lot of things.” I asked, “Do you know the owner? She said, “I think I am one of them.”

She moved from the recliner to the sofa to rest a little more. Off and on for an hour she made numerous comments. I jotted down a few of them. In each case, she seemed to be talking with someone else, not me. She often does this while sleeping at night, and sometimes responds to me if I speak to her. Yesterday’s experience was different. It was much more like something I reported on a week or so ago. She was awake but talked in a style that was more like she was dreaming. Her eyes were open and displayed nothing that would suggest she was asleep. She also talks to herself. It was more like that except that I was just a few feet away from her. What she said frequently seemed out of context as though I were hearing her side of the conversation and not the person with whom she was speaking. Here are a few examples.

“She said we could stay this night and see what we like about it.”

“I think I will close my eyes, but not for long. Then I will get up and make some friends.”

Looking up at the ceiling and laughed she said, “I can see you. . . Oh, look.” She was pointing to the trees out back.

“Wouldn’t it be nice if we could sleep here.? That would be nice.”

“I like this room.” <pause> “You know, this is bigger than I thought.”

“Yeah, I like this place.”

“Do you live here? <pause> I don’t remember her name.” (She chuckles.) “Yeah.”

“Well.” <pause> “Uh huh.” (She chuckles.)

“It looks so pretty out there. Those tall trees. I don’t know what that blue thing is. That real pretty blue. Can you see it?  <pause> Uh huh, right over there. You got it.”

“I’ll just rest here a while.” “Yeah, we’ll come back. You’ve been so nice.”

“That girl over there talked with us a little. She lives here. <pause> To live here. That would be fantastic. We’ll just have to see.”

“My goodness, when did you come in. You’re a pretty lady. <pause> Uh huh. There are a lot of people here.”

I wondered what she would be like when I got her up for dinner. She seemed normal. I didn’t notice anything during or after dinner that was like the way she was in the afternoon. It reminds me somewhat of the urinary tract infections that my dad used to get during his time in a skilled nursing facility except that she exhibits the symptoms so infrequently. This was only the second time she has been like this other than when she is sleeping at night or when I am in another room. I will be watching out for any further signs and be prepared to contact her doctor if I think it is necessary.

 

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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.