Kate woke up at 8:00 in a good humor and appeared to recognize me. At least she greeted me with a smile. As we entered the bathroom, she said, “Excuse me, I don’t remember your name.” She asked just the way she would have done with a casual acquaintance. I said, “My name is Richard, and I am your husband.” When I said, “husband,” she looked surprised and doubtful. When this happens, I shift gears. I said, “Let’s say we’re good friends. How’s that?” She said, “Yes, you’re a good friend.”
While on the toilet, she asked my name at least two or three other times and again as she started to brush her teeth.
Her usual pattern would have been to return to bed, but she was ready to get dressed. I was happy about that. I had arranged for the sitter to come at 11:30 instead of 1:00 because I had a United Way meeting at noon. Her being up early provided enough time to get her a muffin at Panera, pass a little time there, and easily get back home before the sitter’s arrival. As it turned out, we got home forty-five minutes before the sitter.
While at Panera, she said, “Do you have a girl friend?” I hesitated a moment and then said, “I would say that you are my girl friend.” With tears in her eyes, she said, “That’s the nicest thing anyone has ever said to me.” She went on to say, “When we get older, I think you will be somebody like (struggling for the right word) a bank president or something.” I thanked her and said, “We are fortunate to have found each other.” That prompted her to begin a conversation (almost a soliloquy) about other people who haven’t been as fortunate as we have been. I was mostly a facilitator. This conversation lasted about fifteen minutes before she was ready to go home.
I didn’t say anything about the sitter’s coming until the doorbell rang. I explained to Kate that I was going to a meeting and that she and Mary were going to have lunch together. She gave me a dirty look and asked why I couldn’t go with them, but she didn’t look insecure. “Irritated” would be a better description.
This was the longest I have left her, almost five rather than four hours. That made me wonder what she might be like when I got home. As it turned out, she and Mary were seated on the sofa looking at her mother’s family photo book. She didn’t even look up when I walked in the room. I was glad to see that. It encourages me to see her sharing moments like this with Mary. I feel that is an important bond. Mary has been with us for over two years while the Monday sitter has changed several times. I would hate to lose her.
After Mary left, Kate and I picked up the same photo book. We didn’t get far. She was tired and wanted to rest before going to dinner. At dinner, she expressed her desire to get to bed early multiple times. Instead, she became occupied with her iPad until 8:00 when I suggested she might go to bed. She was ready. When I joined her about 9:45, she was still awake. I’m not sure when she went to sleep. I know that I dosed off and woke a little later, and she was still awake.
I don’t know whether Kate remembered my name or our relationship the balance of the day. I know that she acted as though she did and didn’t ask my name again. It was a relaxing day, another day in which we enjoyed being together. I am happy to say that.
Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.
It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.
When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”
After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.
Today is starting the same way. While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.
When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.
After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.
It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.
After dinner last night, Kate and I spent over an hour looking at one of her family photo books. Both of us enjoyed the time together. Then I noticed that it was a few minutes after 8:00. That is when I usually try to wind down with the intent of getting her in bed before 9:00. I try to follow her between 9:30 and 10:00 so that I can get up between 5:30 and 6:00.
As usual, Kate wanted me to give her guidance on what to do. I told her she could start by brushing her teeth. I do that because she normally gets water on her clothes. If she puts her gown on first, she may need to change it before getting in bed. As it turned out, she forgot each of the things I said she should do even though I was giving her only one thing at a time. Before getting in bed, she brushed her teeth three times and used three hand towels and several wash clothes.
She was having a hard time following my directions, and we both got a little frustrated. She must have felt bombarded by instructions. I wanted to take my shower, but I wanted to see that she was ready for bed before then. Once I finally her night clothes on, I went to take my shower with the understanding that she would get in bed when she felt ready.
The first thing I noticed after my shower was that she was not in the bedroom. I went to the other bedrooms to see if she might be in one of them. When I found her, she had just pulled the covers back on the bed and was about to get in. I told her I would like for her to sleep with me. She spoke to me in hushed tones as though someone else was in the house, and she didn’t want them to hear our conversation. I tried to tell her we were alone, but she didn’t want me to speak. I walked her to our bedroom. She seemed a bit nervous and told me she didn’t know where to go. I felt bad about that. This was the first time in a year or so that I have gotten in the shower before seeing that she was in bed. She also felt bad about snapping at me a couple of times during the whole process. She apologized as she normally does. I apologized to her for rushing her.
She must have been unusually tired because she didn’t take any time to pull her hair once she got in bed. She went to sleep rather quickly. That is the first time I recall her doing that in a long time.
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.
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.
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.
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.”
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.
Last night was Opera Thursday at Casa Bella. As I have said before, their music nights have been very important to us both from an entertainment standpoint as well as socially. Recently, however, I have been concerned because we often have six and sometimes eight people at our table. Large groups are difficult for Kate. She does much better when we are with one other couple. That has led me to think about the possibility of our moving to a table by ourselves. I haven’t mentioned that to the owner of the restaurant, and the last time we were there everything was fine. Last night was even better.
Our seating arrangement varies a little from night to night depending on the number of people at the table. The men have followed an unspoken rule that our wives sit on the side of the table facing the singers while we have our backs to them. I started to seat Kate where she sits most often. She asked where I was going to sit. I pointed to the seat across from hers and said, “I’ll be right there across from you.” She said, “I want you to sit beside me.” This is in keeping with her increasing insecurity and desire to be with me and to hold my hand. Not wanting to take the seat of the woman who would be joining us later, I helped her into the seat beside me on the other side of the table. That meant she couldn’t easily see the singers, I felt the priority was being closer together. That turned out to be a good thing for two reasons.
First, the son of the couple we always sit with was there. He took a seat at the end of the table with his mother on his right and Kate on his left. His father took the seat across from me. Although Kate can never remember the couple, she always feels comfortable with them. They are always able to put her at ease. This made for a good social experience for her.
The second reason the seating worked out well related to Kate’s response to the music. As I have noted a number of times, her emotions are exaggerated more than in the past. The music was especially good, and Kate responded accordingly. Most of the evening she didn’t respond audibly the way she sometimes does, but she was visibly moved.
The most dramatic moment came during the last song of the last set when they often sing a few ballads or showtunes. Last night they ended with “For Good” from Wicked. In the musical, this is a duet sung by Glinda and Elphaba who tell each other their lives have been changed for good by the other.
Although Kate has difficulty following conversations, I am often surprised when she responds to specific words or phrases in songs. She picks up far more than I expect. In this case, I believe she was moved by both the music and the lyrics. She began to whimper very soon and held my hand throughout the song. During the last couple of stanzas, she was moved even more. As the song ended, she put her head on my shoulder and her arm around my neck and broke into a cry. She wasn’t loud, but people nearby would have easily noticed. As we hugged, I saw a couple at the table beside us who were looking on. They are aware of Kate’s diagnosis and have been very compassionate in their response to her. When the program ended, they came over and gave her a hug.
For me it was also an emotional moment. I can’t know exactly what she was thinking. I do know that she recognizes she has “a problem” and that she needs me. I know she understands certain words and phrases from songs. Did she understand the words of the song and draw a connection to our relationship? Was she simply moved by the music and not the lyrics? I only know it was an very emotional moment.