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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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Another Morning Surprise

It was just a few days ago that I reported on the unpredictability of our mornings. That continued this today. Kate was awake, or woke up, when I got up at 5:50. I thought she might want to go to the bathroom, but she declined. I had been in the bathroom only a few minutes when she opened the door. I walked over to assist her to the toilet but found that it wasn’t the bathroom she wanted. She said, “Is she all right?” I did what I should know not to do. I said, “Who?” She gave me a dirty look. Often she says, “You know who.”, but just as often she gives me a look that communicates the same message. Fortunately, she asked “Is she all right?” several more times. That gave me a chance to say the right thing. Each time I said, “She is fine.” That seemed to provide her with momentary relief, but she continued to be concerned. During the next few minutes, she made other comments like “Are you sure she is all right?”  “I love her so much.” And “Could I see her?” I feel sure she must have been thinking about her mother but never found out.

When we got back to bed, I asked if she would like me to stay with her. Of course, the answer was yes. Unlike the other recent times when she has wanted me to stay, I hadn’t already dressed. I put on an album of very soothing music and got back in bed with her. I stayed there until just before 7:00. She was still awake but relaxed.

I knew she was likely to go to sleep and expect I wouldn’t hear from her until I woke her at 10:45. I was wrong again. I saw her on the video cam at 8:10. She was sitting up. When I reached her, she was wide awake and ready to get dressed. This was another day when she wanted me to take her “home.” That has become more frequent in the past few weeks. I told her I would. Strangely, she wasn’t persistent this time. She mentioned going home a couple of other times but seemed to have forgotten before we left for Panera. We got here about 9:15. She is just now finishing her muffin. I suspect it won’t be long before she will be ready to leave. How long depends on how well she is doing with her puzzles.

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Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

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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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Mornings Are Unpredictable.

Predicting what Kate will be like when she wakes in the morning is challenging. Some mornings she is cheerful. Other days she seems disturbed. Recently we had experienced several especially good days in a row. That came to an end yesterday.

I went into the bedroom about 10:15 when I noticed that it looked like she might be getting up. She was awake, but I quickly recognized that it was one of those times when she didn’t know anything. Her mind seemed to be a complete blank. I spoke to her very calmly and explained that I could help her. I began to tell her a little about her mother and father and mentioned that we had some photo books I could show her. She didn’t want to get out of bed, so I brought in her “Big Sister Album.” I showed her a few pictures, but the light was too dim for her to see well as she was still lying in bed.

We went through our usual routine of her asking and my telling her my name and hers, but nothing sounded familiar. Very early I told her I was her husband. She didn’t take to that, and I said, “Just let me be your friend.” That worked.

She told me she didn’t know what to do. I suggested that she get up and go to the bathroom and then get dressed. She surprised me by taking my suggestion. She was a bit insecure as we headed to the bathroom and held my hand all the way. Once there, she depended on me to tell her what to do.

When we finished in the bathroom, we went back to the bedroom where I proceeded to help her dress. She had everything on but her shoes when she wanted to lie down. About twenty minutes later, I told her I would like to show her something that I thought she would like. She got up without a problem. She put her shoes on, and we walked to the hallway outside our bedroom where I showed her pictures of her mother and grandmother. She wasn’t as interested as usual but did enjoy seeing her mother’s photo. Things were getting better. Several times she asked, “Who are you?” I gave her my name without indicating our relationship. That seemed to suffice.

Once in the family room, I picked up the “Big Sister Album” and showed her the cover photo of her and her brother. She sat down in a chair to look at it. She took interest in the photos of the little girl but didn’t know who she was. I pointed at one in which she had taken special interest and said, “That’s you.” She said, “What’s my name?” I told her. She was elated and said, “Now I have a name?” It was a special moment of joy for both of us.

A few minutes later, the sitter arrived. I met her in the garage and explained what had been going on. She asked if she should still take her to lunch. I told her I thought that would actually be helpful for her. Then we walked into the family room. I said, “Look who’s here. Your friend Cindy, and she is going to take you to lunch.” Kate received her enthusiastically and said a loud “Yippee!” I was relieved and left for Rotary. Kate didn’t express any reservations about my leaving. She was happy, and so was I.

 

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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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Weekly Data on the iPad

After several years during which Kate worked jigsaw puzzles on her iPad 6-8 hours a day, she has decreased her time substantially over the past few months. She has leveled out the past five weeks. Her total screen time for the past week was 3 hours and 15 minutes. Her daily average was 27 minutes, close to her 4-week average of 25.5 minutes.

The time she would have spent on her iPad has been replaced by resting and looking at photo books. The latter she usually does with me and also with the sitters. Last night was a notable exception. After dinner, she and I spent about thirty minutes looking through her “Big Sister” album that her brother made for her. Then I wanted to watch a football game, and she wanted to continue. She did that for almost forty minutes. I was pleased to see that because that would give her something she could do on her own; however, I can easily see that it might be hard to retain her interest for long since she has such difficulty recognizing the people in the photos. That includes her as well as other members of her family. On the other hand, sometimes she does recognize her mother, her father, her brother, and herself. Maybe that can sustain her for a while. I am sure both of us would like that.

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Music Continues to Provide Needed Therapy

Kate and I have relied heavily on music as a form of therapy. Unlike so many other things, that is something that has not yet become a thing of the past. I would have to say though that the way we have used music has changed over the years. At the beginning, we entertained ourselves by attending musical events . These included opera, musical theater, and a variety of concerts. Over time, I included more music at home and in the car. Unlike the early musical events, I chose music for its therapeutic benefits rather than just entertainment. Initially, I used music to calm Kate when she had a panic attack. Those occurred exclusively when I rushed her to get ready to go places. I would play the Second Movement of Brahms Violin Concerto and similar movements from other concertos. That seemed to relax her.

Before we stopped going to evening events, I expanded our music at home with a wider variety of music. A year and a half ago, I bought a number of DVDs of musicals that were a good way to end the day. Kate especially liked Les Miserables which she watched seven times in seven weeks. Ultimately, she tired of videos of musicals, and I have since relied on YouTube videos of concerts or portions of them for our evening time for relaxation before going to bed. Among those, I have found the Andre Rieu and the BBC PROMS concerts particularly good. Often, however, I have done a search on a particular singer. Then I let YouTube follow with whatever their algorithm selects for us. The best thing about YouTube is that they always have new videos and a wide diversity of musical genres.

The musical programs at Casa Bella stand out for the way they combine both music and a social occasion that Kate has been able to appreciate. Music is clearly the greater draw, but the fact that we have sat for years with essentially the same people has made it easier for Kate to enjoy each evening. Over the past six months or so, I have had an increasing concern that she is becoming less comfortable with the social aspects of these evenings. That is largely because we more frequently have been seated at a table with as many as six or seven other people, some of who we haven’t known. That makes it more difficult for Kate to follow and to participate in the conversation. That has made me think about requesting a table for two rather than sitting with a group. Recently, however, we have had some evenings that have given me reason to believe we may be able to continue somewhat longer at our regular table.

This past Thursday was one of those times. There were six of us, but we have sat together with one another for several years now. Of course, Kate can’t remember that, but she is comfortable when she is with them. As I suggested earlier, it is music that is the primary attraction, and last night was the best night of jazz that we’ve had. The singer and the man on the keyboard were superior to others we have heard previously. The crowd responded enthusiastically. Kate was, perhaps, the most enthusiastic, and that may be an indicator of an ultimate problem.

She has always been more expressive of her pleasure than others sitting around us. Off and on throughout most of the songs she likes best, she says both “Wow” and “Oh.” She seemed to be louder this week than in the past. That would fit with her other expressions of emotion lately. This wouldn’t be a problem at all when the audience is applauding, but it seems a bit “over the top” during the music. She can be heard easily at our table and those next to us. The people with whom we sit are very understanding, but I occasionally wonder if this is ever annoying to them. At some point, I may speak with our friends at our table and gauge what I think is best. It may well be that the combination of Kate’s feelings about being with others and emotional behavior will be the thing that leads me to sit at a table for two. Whatever we do music is no less important for either of us today than it was at the beginning of her diagnosis, and I am optimistic that it will remain that way for the foreseeable future.

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Problems with Toes, Teeth, and Hair

Kate’s “hair-pulling” is an old story, but I’ve said less about her toes and teeth. They are beginning to play a more prominent role in her personal care. Let me tell you about an episode earlier this week.

It was a very good day. Kate got up to go to the bathroom around 5:30 and went to bed. She got up around 7:30, and we went to Panera shortly after 8:00. We came back to the house and relaxed until lunch. She was in a good mood. We had a nice conversation at lunch. The sitter came at 1:00. Kate received her warmly and didn’t seem disturbed in the least when I left. She was happy to see me when I returned but didn’t express any sense of relief as she has on a few occasions. We had a good experience at dinner.

While we were eating, she told me she was likely to get to bed early. I didn’t think much about it since she often says that but doesn’t get in bed. I have to admit, however, that she has been getting into bed earlier lately now that she hasn’t been occupied with her iPad. That night was one of those times.

First, she went to the bathroom. She spent 20-30 minutes “brushing” her teeth. She didn’t really brush them all that time. Much of the time she was rinsing her mouth with water and using her fingernails like dental floss. She always feels like she has food caught between her teeth. I often help her with flossing, but that doesn’t seem to work. She finally gave up and came back to go to bed. I got her nightly meds and helped her get into her night clothes.

She was disturbed about her teeth. She mentioned she hadn’t been able to get all the “bees” out. She followed that by other words that didn’t fit what she meant. She was talking about something in her teeth. She also talks the same way about things between her toes and in her hair. Sometimes she refers to them as “these little things” and says they are “smart.” She says they know when you’re trying to get them. I was able to calm her by talking to her softly and telling her I would help her. That is when she focused her attention on her toes. She wanted me to get a towel or wash cloth and get “them” out. I followed her instructions, and she felt better.

Then she got in bed and started pulling her hair. It wasn’t long before she became frustrated. She said she was tired and hadn’t been able to finish and would have to do it tomorrow. A few minutes later, she asked me to come over and pull her hair for her. I did that for a couple of minutes before reminding her she was going to rest and work on her hair in the morning. She said I was right that she needed the rest and thanked me for helping her. She was fine after that; however, I don’t expect this to be our last episode with “them.”