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A Rocky Start with a Nice Finish

Yesterday morning I had two surprises. I was happy about the first one. Not so for the second. First, the good news. I saw on the video cam that Kate was up, and it was about 8:00. I always like it when she gets up without my having to wake her. That is especially true on a day that we have a sitter. That insures that I don’t have to rush her before the sitter arrives. It’s even better on Monday because the sitter comes at noon instead of 1:00.

When I got to the bedroom, she had just come out of the bathroom. She seemed alert and showed no signs of confusion. I asked if she was going to take a shower. She said she was. I knew that she would want to rest a while after her shower, but I also knew that we had plenty of time and still might be able to get to Panera for her muffin, something that is a rarity these days. As expected, she got her shower and went back to bed.

A few minutes after 10:00 I decided to get her up. That’s when I received the second surprise of the morning. She wasn’t asleep, but her eyes were closed. I asked if she would like me to take her to get a muffin. She gave me a strange look. She wasn’t the same alert Kate I had greeted earlier. She was clearly confused. When I said that I had her clothes out and would help her get dressed, she looked at me sternly and said, “Who are you?” I gave her my name and told her I was her husband. She was surprised. That is not unusual; however, she was obviously uncomfortable and pulled the covers up to her neck. I said, “You do recognize me, don’t you?” She didn’t and didn’t want me to help her dress. This was totally unlike any of our previous experiences. There wasn’t any way that I was going to explain this.

I didn’t push her. I told her I thought I could help her and got her “Big Sister” album. I showed her the photo of her and her brother on the cover. She didn’t show any sign of recognition until I pointed to her picture and said, “Who do you think this little girl is?” She hesitated and then said, “Me.” I turned to the first page and showed her a photo of her with her mother and daddy. Then I turned to a section that has a few of our wedding pictures. She didn’t remember anything.

I decided she just needed a little more time. I told her I wanted to take her to get a muffin. She asked about her clothes. I showed them to her and suggested she get dressed. By this time, she was beginning to feel more comfortable with me, but she still did not believe I was her husband. She did, however, let me help her dress.

When she was dressed, she noticed a wedding picture of our daughter, Jesse, on the dresser and said, “Who is she?” I explained that she was our daughter. She walked over to it and asked if she could take it with us. I told her she could. She asked where she could keep it. I told her this was our room and that she could keep it right there on the dresser if she liked. She still wanted to take it with her.

In the car on the way to Panera, I said, “You seem like you’re feeling less confused now.” She acknowledged that she was and said, “What’s your name?” I said, “Richard Lee Creighton.” Then she asked me her name. I said, “Katherine Franklin Creighton.” She frowned when she heard “Creighton.” I didn’t say anything.

When we got closer to Panera, she asked my name again. I told her and added that I was her husband. She wasn’t buying that. After we had been seated a while, she asked my name. I told her and said that I was her husband. She didn’t believe me. Again, I didn’t push.

We had been at Panera about forty minutes when I thought we needed to get home for the sitter. On the way I reached out my hand and touched her leg and said, “I love you.” She put her fingers to her lips and blew me a kiss and said, “I love you too.” I took that as a sign that she had finally recognized who I was.

The sitter arrived a few minutes after we were home, and Kate seemed perfectly normal. I said I was going to Rotary, and she said, “What are we going to do?” I told her that she and Cindy could go to lunch at either Applebee’s or Panera. She said, “Why don’t you go with us?” I explained that I needed to attend my meeting. She didn’t seem to mind that, but I was glad to see that she would have felt even better if I had stayed.

When I returned home, I was pleasantly surprised to see that Kate and Cindy were having a conversation in the family room. Kate seemed to be taking the lead. Cindy said they had gone to Applebee’s for lunch and come back to the house. She said Kate had not worked on her iPad at all and that they had been talking the whole time. That was another surprise and a welcome one. I was happy for two reasons. First, that she hadn’t had a nap. Second, because she was able to engage in conversation for such a long period of time and that she was doing a lot of the talking. I want Kate to develop a strong relationship with her. This was a dramatic contrast with her confusion this morning. I felt much better.

The rest of the day went very well. We spent about an hour and a half at Barnes & Noble and then went out for a Mexican meal at Chalupas. She spent the rest of the evening working on her iPad while I watched the news. Then I turned on a series of YouTube videos for her. Several times she needed help with her puzzles, but she seemed to get along well after that. When I told her it was bedtime, she was very cooperative. She slept through the night and is still sleeping as I finish this post at 7:30.

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Delusions and Hallucinations

A friend of mine recently asked if Kate ever had any hallucinations. I told him she has, but they had not been frequent. I also mentioned that they had not been disturbing ones. When I answered, I wasn’t thinking about the technical definition of hallucinations. I was really thinking about delusions. They are often confused. According to the National Institute of Health “Hallucinations involve hearing, seeing, smelling, or feeling things that are not really there.” “Delusions are false beliefs that the person thinks are real.”

The closest thing to a hallucination Kate has experienced is deja vu. For years this was a very common experience. Over the past year or so it has almost disappeared. This happened most commonly in restaurants. She often pointed to other customers and would say something like “See that couple over there. They always sit in that same place.” That might have been so in a restaurant we frequented on a regular basis, but she had these experiences in places where we had never been before. It also happened in hotels where we hadn’t stayed before.

Although rare, she has also had experiences that I would definitely call delusions. These have usually been a belief that someone was coming to our house for a visit or that we were leaving the house on a trip. On arriving or leaving our home, she has often thought our house was a hotel, a B&B, or a former home in Texas.

When she got up a few weeks ago, she appeared anxious and asked me if she had to to go to a meeting. I told her she didn’t have any obligations that morning, and she was greatly relieved. That was all there was to it. Something happened yesterday that was quite different.

When I got home to relieve the sitter, I walked into the family room. As I did, Mary told Kate she would see her next week. Kate looked frightened and said, “You’re not coming back?” Mary repeated that she would be back next week. Kate said, “Good, because I need you.” I was surprised at the emotion she expressed. She may have thought Mary was leaving her alone right then.

I walked over to Kate. She was very relieved and said, “I’m so glad to see you.” I sat down beside her and put my arm around her. She repeated, “I’m so glad to see you.” Then she added, “I didn’t know where you were. I thought maybe I had done something wrong.” I said, “You didn’t do anything wrong. I just went to the Y and picked up some prescriptions at the pharmacy. Then I had coffee with Mark Harrington. And now I’m going to take you out for pizza.” She was still emotional and said, “That sounds nice. When do you want to go?” I told her to let me put away the prescriptions, and we could leave. When I had done that, I went back to her. She was lying on the sofa. I asked if she would like to get a pizza. She said she wanted to rest a few minutes before leaving. I kneeled down beside her and told her I was glad to see her. She continued to be emotional and teary. I told her I loved her. With a sad expression on her face she said, “I don’t even know your name.” I said, “I’m Richard.” Her eyes lit up with delight, and she started crying. Through the tears she said, “I knew that. I just couldn’t think of it.”

That didn’t end the emotions she was feeling. She continued to say she thought she had done “something awful.” It went on for at least thirty minutes until after we were seated for pizza at our nearby pizza place. I was surprised that her memory allowed her to remember for so long, but feelings last much longer. As she talked, I tried to concentrate on comforting her and didn’t push her to explain. Normally, she can’t explain the way she feels and doesn’t want to try. Not this time. She wanted to explain what she was feeling. She said she didn’t know what it was, but it was terrible.

After we were seated at the restaurant, she gradually began to calm down. Several times I said, “You seem more relaxed now.” She said, “I’m getting there.” I said, “It takes time when you’ve had an experience like this.” She agreed. Before our pizza arrived, it was over. I’m glad we escaped anything more serious than this but wonder what else we may encounter in the days ahead.

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A Day of Ups and Downs

Kate’s confusion in the morning continued yesterday. The good news is that she wasn’t at all irritable. She just didn’t know who she is, who I am, or where she was. She was sleeping very soundly when I went to get her up. I really hated to wake her, but I knew we needed to get to lunch and back before her massage at 2:00. I wanted to allow plenty of time to avoid rushing her.

As I expected, she didn’t want to get up, but she did so very cooperatively. She was confused. She looked out the bedroom window as she does each morning and didn’t recognize where she was. Then she said, “Who are you?” I told her I was her husband. She was puzzled. I didn’t try to explain. I simply suggested that she take a shower and that we could look at some pictures I thought would help her. Again, she was cooperative.

She wanted to rest a while after her shower. That is not unusual at all. We had time, and I told her to go right ahead. After thirty minutes, I went back and helped her dress. When she was ready, I took her to the family room and showed her the “Big Sister” album. She immediately took to the cover photo of her and her brother. I asked if she knew who they were. She pointed to her picture and said, “Me.” She also recognized her brother. I find it amazing how a photo can begin to bring back memories. It is something that her intuitive abilities enable her to do. We opened the cover and looked at the first few pictures. She connected with them very quickly. Her sense of confusion was lifted.

I suggested we go to lunch and come back to spend more time with the album. She asked if she could take the album with us. I told her she could. When we got to the restaurant, she asked if she could take it inside. As I was about to suggest that she leave it in the car, she said, “Maybe I should leave it here.” I told her that sounded good to me.

It’s been over a month since Kate’s cataract surgery. It has definitely improved her vision – at least in some ways. I notice that she tries to read more than she did before. By “read” I mean to read a headline in a magazine or signs she sees wherever we go. Occasionally she makes an effort to read an article in a magazine, but the font is almost always too small for her. The major problem is not her eyes. It’s her Alzheimer’s. That was evident at lunch when I asked if she was going to eat her sandwich. She said, “Where is it?” This, too, is not unusual. She frequently fails to notice food that is on her plate. Once I pointed it out to her, she took a bite and put it down. A few minutes later when she hadn’t taken another bite, I asked if she wanted the rest of her sandwich. She asked me where it was. I believe part of the problem has nothing to do with her sight. I say that because she seems to locate most of the fries. I notice something similar when she has salmon and sweet potato fries at the Bluefish Grill.

It was noisier than usual at lunch. We were seated near a group of twelve on one side and eight on the other. Noise always bothers Kate. She was especially sensitive to that yesterday. She was in a generally good humor but annoyed by the chatter coming from both directions.

When we got home, we had about forty minutes before we needed to leave for her massage. She wanted to know what she could do. I suggested we sit on the sofa in the family room and go through the “Big Sister” album. She enjoyed that a lot but needed help identifying everyone. I think most of the problem is that people don’t look the same in photos taken at different times. Her Alzheimer’s also plays a part. For example, in a picture of four people standing side by side, I could help her identify the person on the extreme left. Then I would tell her the name of the person standing next to him. She has a tendency to skip that person and see the person to the right of him. That occurred several times even when I had my finger on the photo of the person. It’s not something I can understand. I just know it happens.

It wasn’t long before it was time for Kate’s massage. I left her there while I waited at Whole Foods which is a couple of doors down from the spa. When I went back to get her, she was sitting in a chair in the waiting room. She said, “Boy, am I glad to see you. Let’s get out of here.” It is always hard for her to explain how and why she feels a certain way, but I gathered that she was very confused about the whole process. She didn’t know what was going on when the therapist put her hands on her. I hadn’t thought about this before, and she has never acted this way before. She probably didn’t remember what it is like to have a massage. In addition, the therapist was someone she had not seen in quite a while. I am sure everything seemed strange to her even though I have been taking her twice a month for about three years. She has never expressed any enthusiasm about her massages, but I thought they must be enjoyable. Now, I am reconsidering. I think I’ll try one more time. If she isn’t happy with that, I’ll stop taking her.

The rest of the day went well. When we got home, we picked up her photo album again and looked at it until it was time for us to leave for jazz night at Casa Bella. We have heard the singer and the woman on the keyboard many times over the years. They are well-known locally and around the state. It was a very good evening. Kate had trouble hearing and understanding a lot of the conversation, but we were sitting with the same couple we’ve been with since the music nights began. They operated the restaurant for many years until they turned it over to their daughter and her husband. Shortly after we were seated, Kate said, “What’s the name of this place?” I told her and then said, “And this is the daughter of the woman who started the restaurant.” Kate had, of course, forgotten that as well. It was not an uncomfortable slip since the couple are aware of Kate’s Alzheimer’s and have been very supportive of her.

We got home a little later than usual, and Kate went to bed right away. It was a day of ups and downs, but it’s always good to end on a high note. We did.

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A Slow Start, But a Good Finish

Yesterday Kevin and Rachel celebrated their 25th anniversary. It was a special opportunity to be with them and the grandchildren. I only wish Kate could have understood and been able to enjoy it. She got off to a rocky start. It was one of those few days that she didn’t know who I was when went in to wake her. I told her we were going to have lunch with Kevin. Knowing she can’t remember who he is, I was careful to tell her that he is our son. I don’t believe that fully registered with her. As she sat on the side of the bed before standing up, she gave me a puzzled look and said, “Who are you?” I told her, but she still looked confused.

She asked me what she was supposed to “do now.” I told her it was time for a shower and walked her into bathroom. She showered and dressed more quickly than usual. I sent a text to Kevin letting him know she was up. His family was as well, and they came over for a short visit at the house before we all went to lunch.

Kate was not in a good mood when she woke up and wasn’t interested in being with company. That and the fact that she had had trouble the day before led me to take the lead in our conversation. TCU is very important to her. I drew attention to the number of us who had graduated from TCU or were current students. Of the remaining two grandchildren, our granddaughter will be a freshman in the fall. I also mentioned that it was a special day, Kevin and Rachel’s 25th anniversary. My efforts fell flat. Kate was not ready to engage in conversation. I believe it was a combination of her mood as well as some insecurity. We had lunch together at a nearby deli. Kate was mostly quiet. I felt she was uncomfortable. After lunch, Kate and I came back to the house while Kevin’s family did some sightseeing.

We were home about forty minutes before we left for Kate’s dental appointment. She frowned when I told her where we were going. I was surprised. She has always liked her dentist. She was quiet all the way. We waited a few minutes in the lobby before the hygienist came to take her to the back for her cleaning. Even though Kate has known her for years, she didn’t display any emotion of recognition or pleasure at seeing her.

In a little while, the hygienist returned to speak to me. She said Kate resisted the X-Ray procedure. When she got to the polishing part, Kate seemed frightened. The hygienist didn’t go any further. I explained that she had not been in a good mood since getting up. Ironically, I had been considering taking her back for a cleaning every month or two. That doesn’t seem like a good thing. Besides that, she said Kate seemed to be doing a good job brushing. I told her I was a little surprised but that she brushes her teeth a lot during the day as well as when she gets up at night. She left and brought Kate back to the reception area where I took care of the bill.

As we drove away from the dentist’s office, she said, “Are you hungry?” By this time it was less than three hours since we had eaten lunch, but it is not uncommon for her to think she is hungry even sooner than that after a meal. I understand from what I have learned from others that this is quite common for people with dementia (PWD). I told her I wasn’t hungry, but I thought it was a good time for a treat and mentioned going to Marble Slab. She liked the idea.

After tasting the first bite, she raved about how good it was. I agreed. She continued to express her pleasure until she had finished. She was a changed person. All signs of moodiness had vanished in an instant. She talked about having another serving, and I felt the same way but didn’t give in. I knew that we would soon be having a big dinner.

Coincidentally, I had read a relevant section of Dementia With Dignity by Judy Cornish earlier that morning. It is a companion piece to her Dementia Handbook in which she outlines the importance of focusing on the intuitive abilities of people with dementia (PWD). Her latest book gives more details on how to apply her theoretical framework presented in her earlier work.

The part I read emphasizes the importance of managing the moods of those with dementia. She notes that PWD regularly fail at tasks and conversation and are unable to “understand where they are, why they are there, and who they are with.”  She goes on to say that these experiences often lead to negative feelings. Her point is that caregivers can play a major role in redirecting their moods. I hadn’t been successful with that when we were with Kevin’s family earlier in the day, but taking her out for ice cream did the trick.

That was good preparation for dinner. We came back to the house where she wanted to rest. Not long after that, Kevin sent a text asking if we were home. He and the children came over for an hour or so. We played Mille Bornes while Kate continued to rest. They left around 5:00 to get ready for our 6:00 dinner.

The dinner went very well even though it was a challenge for Kate to keep up with the conversation. She had to ask us to repeat ourselves a number of times. After I offered a toast to Kevin and Rachel, she leaned over to me and whispered, “Whose anniversary is it?” Despite these things, I was encouraged she was trying to understand and didn’t appear to be withdrawn.

So the day ended on a high note. I am glad about that but also disappointed that Kate was unable to fully enjoy what was a very special visit with Kevin’s family.

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Increasing Confusion

Over the past week Kate has been more confused than usual. Her morning confusion is more than her typical grogginess that I am used to. She has no idea where she is when she wakes up. A couple of times, including yesterday, she thought she was in Texas. She said how good it felt “to be here.” I agreed. I was happy that she was not troubled in the least. All day long she asked me where we were. I gave her all sorts of variations hoping I might give her exactly what she wanted. Most often, I said, “We’re in Knoxville, Tennessee.” Sometimes I just said Tennessee. On the way home after dinner last night, she wanted something more specific. I told her we were in Oakwood.

She continues to work on her puzzles even though she has more trouble than in the past. Two nights ago, she asked for my help after dinner. This was one of those cases when she wanted me to explain what she was to do. I tried to keep it simple. I attempted to get her to look for the edge pieces. I was actually surprised that she seemed to catch on and then would immediately try to put an edge piece in the center of the puzzle or select a piece that was not an edge. I spent a good thirty minutes “helping” her. I didn’t have much success. On the other hand, when I left her to take a shower, she seemed to get along all right. Since completing jigsaw puzzles requires rational ability, it is surprising that she can work them at all. As I have suggested before, she appears to go through a trial and error process to place each piece rather than using either the shapes or colors to help her. It takes her seven to ten minutes to complete a 16-piece puzzle.

Along with the confusion, she often does things I can’t explain. For example, as I was finishing up my shower the other night, she came into the bathroom with her iPad, cup, and winter coat. I said something about my planning to come back to the bedroom in a few minutes, she turned around and walked into the bedroom. She didn’t know where to go. I suggested she take a seat in her chair and work on her iPad. She did.

When it was time for her to put on her night clothes, she wanted to do it herself. I gave her the night gown. She struggled with it trying to distinguish the top from the bottom and the front from the back. She had to call for my help. That’s not a new thing, but it is one more example of the growing number of things that are problems for her.

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An Early Morning Conversation

Kate got up at 4:30 this morning to go to the bathroom. As I walked her back to bed, she started a conversation that lasted about fifteen minutes. Here’s an excerpt.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “Really? It’s a nice place.”

I got back in bed.

Kate:              “What’s the name of this place?”

Richard:        “This is our house.”

Kate:              “It is?”

Richard:        “It really is.”

Kate laughs loudly when she realizes she hasn’t recognized her own house.

Richard:        “I love you.”

Kate:              “I love you, too. <pause> What’s your name?”

Richard:        “Richard.”

Kate:              “What’s my name?”

Richard:        “Kate, and we are a pair.”

Kate:              “We’re a good pair. Where are we?”

Richard:        “We’re in our house in Knoxville, Tennessee.”

Kate:              “I like it. We’re lucky.”

Richard:        “We’re very lucky.”

Kate:              “Where are we?”

I love our conversations. We are lucky.

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“This is not my best day.”

Kate was up a little earlier yesterday. That gave us time to spend an hour at Panera before leaving for lunch at Andriana’s. Other than the time she got up, Kate seemed pretty much the way she usually is, perhaps a little less groggy. After we took our seats at Panera, I discovered something that established a pattern for the rest of the day. Here’s an excerpt of our conversation.

Kate:              “What’s my name?

Richard:        “Katherine Franklin Creighton.”

Kate:              (Looks puzzled) “Creighton? Where did I get that?”

Richard:        “From me.”

Kate:              “Are you my father?”

Richard:        “No.”

Kate:              “Who is my father?”

Richard:        “Charles Franklin.”

Kate:              “Charles Franklin. Who is he?”

Richard:        “He’s your father.”

Kate:              “Is he married?”

Richard:        “Yes. He married Virginia Franklin.”

Kate:              “Wait. Tell me that again.

Richard:        Your parents are Virginia and Charles Franklin.”

Kate:              “Do they have any children besides me?”

Richard:        “Yes. You have a brother.”

Kate:              “What’s his name?

Richard:        “Ken Franklin.”

Kate:              (Now on overload) “Stop. You’ll have to tell me again, but later.”

In some ways this conversation was no different than others we have all the time. What struck me about this one was that nothing I said appeared to spark the least sign of recognition. Normally, upon hearing her father’s name, she might say something like “He was a nice man.” In this conversation she was always searching for something that sounded familiar and not finding anything. She just kept asking questions until she couldn’t process any more.

From Panera we went directly to lunch at Andriana’s. She continued to have memory problems. The big surprise was the first time (of many) that she pointed to the mug shot of Frank Sinatra and asked me who he was. I fully expected her to say, “I don’t like him.” She has been saying that or some variation the past few years we have eaten there. This time she didn’t say anything. It was about the third time she asked that she said, “Is he a nice guy?” I tried to get around this by saying that he was very popular. She pushed a little harder, and I told her that his ex-wives and girl friends might not think so. She didn’t pick up on that. Subsequently, she just asked his name, and I told her without her expressing any evaluation. That is a big change from the past.

Before we got our food, she asked about her name and mine. That led to asking about our relationship. When I told her I was her husband, she was surprised. She couldn’t understand how that could be, but she did believe me. It was one of those times when she was glad to know we were married. Despite her confusion, we had a very nice lunch and conversation.

As soon as we got home, she wanted to take a nap. She rested about an hour. Then she came to the family room and started work on her iPad. It wasn’t long before she saw the “Big Sister” album on the coffee table. She picked it up and started to go through it. I was seated across from her with my laptop. She spent about twenty minutes before asking if I could help her. I took a seat beside her on the sofa. She asked me to tell her all the names of the people in the photos. She didn’t mean on a single page or several pages. She meant all the people in all the photos in the book. Most of them are of her, her brother, her mother and father, and occasionally other extended family members. She never appeared to recognize them from one photo to another. Each time I said, “This is your Daddy” she said, “What’s his name?” The same was true for her mother. Frequently, one photo was beside the other. I still needed to tell her their names. We hadn’t gone through more than four or five pages before her brain was on overload. That’s when she said, “I think we should stop. This is not my best day.” Once again, I was struck by how well she understood that she was not having a good day. I should add that she didn’t display any sense of frustration, confusion, or anxiety. She simply recognized her brain was not working as well as it should. She was right.

I suggested we leave for dinner. She said, “Maybe that would help.” She sometimes says the same thing before taking a nap. On the way to the restaurant, she asked, “Are we in Texas?” I told her we were in Tennessee. She said, “Where is TCU?” I said, “In Texas.” She said, “I know that, but where is it around here?” She hadn’t remembered I had just told her we were in Tennessee.

We had a nice time at dinner. We didn’t talk a lot, but we did converse off and on throughout the meal. She had salmon and talked about how good it was. When she had almost finished, she said she was getting full and wanted to know if I wanted the rest. I took a small piece, and she said, “It’s all right but not really that good.” This change in evaluations is not unusual. This happens frequently and makes it difficult to know if she really likes or dislikes things.

When we stood up to leave the restaurant, she said, “I want you to know I’ve enjoyed being with you. You’re a nice guy.” It sounded like I was her boyfriend, and she was about to dump me. I said, “Thank you, I enjoy being with you too.” In the car I mentioned something about our son and his family’s being in town next weekend. She said, “What do you mean our son?” I explained that we are married. She gave one of her most common responses, “How did that happen?” I told her and said, “Are you unhappy about that?” She said, “No, I’m glad. You’re a nice guy.”

Back at the house she picked up her iPad and worked puzzles for the balance of the evening. That is not to say it was easy. She ran into problems working puzzles all day. At one point last night, she closed the iPad and put it down. I could tell she was a bit frustrated and asked if she would like to look at one of her photo albums. She said she would. I brought her the “Big Sister” Album. She expressed only mild interest in the cover photo that she loves so much. In a few minutes, she said, “What do I do now?” She had never opened the album. I went over to her and opened to the first page of photos. She didn’t express much interest. I couldn’t believe it. I told her who the people were, but that didn’t make any difference in her response. She said, “What do I do now?” I told her she should just look at the pictures. I started to step away when I noticed that she was pressing a photo. She was treating the album as though it was her iPad with jigsaw puzzles. She thought when she pressed a photo, it would scatter the pieces so that she could put them back together. She was confused when nothing happened. I told her they weren’t puzzles but pictures. She was disappointed and said, “Then what do I do with it (the album)?” I told her she could just look at the pictures and enjoy seeing her and her family. She must have had it so deeply imprinted on her mind that it was an iPad with puzzles that she couldn’t relate to it as a photo album. I said, “It sounds like you would rather work puzzles now.” She nodded. I picked up her iPad and gave it to her.

While she was working on her iPad, I played a variety of YouTube videos starting with Tony Bennett and Diana Krall. She expressed only modest interest until I pulled up a Julie Andrews concert. She enjoyed that so much that she put her iPad down and watched. That led automatically to a portion of a BBC PROMS concert from 2010. It featured the music of Rogers and Hammerstein. She was fully engaged. Once again, music made a difference.

She was so engaged that she didn’t want to go to bed. She finally did and slept until 1:45 this morning. She sat up in bed. I asked if she wanted to go to the bathroom. She said yes and asked, “Should I go to my bathroom?” and pointed to our bathroom. She seemed rather alert and got up on her own and walked to the bathroom. I was afraid I might go back to sleep before she returned to bed, so I got up. After using the toilet, she spent about ten minutes brushing her teeth and cleaning her face.

I walked her back to the bedroom. As she was getting into bed, she said, “Well, we did it. <pause> Once again.” I didn’t ask what she was talking about. I just agreed that we had done it again. Once we were in bed, she laughed and said, “If we told our friends about this, they wouldn’t believe it. <pause> I almost don’t believe it myself.” She repeated this several times before we went to sleep. She is still sleeping. I wish I knew what she was talking about.

Given all these things, how do I assess the day? Clearly her memory was worse than any other day I can recall. In that respect, it was a bad day. To make matters worse, I know that this is part of a transition to even greater memory loss. I don’t like that. For the most part, Kate’s decline has been very gradual. The most striking changes have been since last spring. I know from others that people with dementia sometimes have sudden changes. Should I expect to see more of this in the next few days? Weeks?

On the other hand, she was happy all day except for a little frustration with her puzzles last night. We had a good time together. For that reason, I think of it as a good day. I really mean that. It reminds me of a professional and Facebook friend whose child has Down’s Syndrome. I know she is troubled by her daughter’s diagnosis and wishes she weren’t disabled in this way; however, she relates to her daughter as she would do with a normal child and enjoys her immensely. It’s much the same with Kate and me. Having Alzheimer’s is the worst thing that has ever happened in either of our lives. I find it especially difficult to watch her lose more and more of her abilities, but I try to look on the positive side (what she can do and what we can do together) and be grateful for those special moments we experience together.

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Troublesome Moments

Kate does an incredible job maintaining her cheerful outlook most of the time. She does so even when she recognizes that her memory is poor and that she needs help with many of her daily activities. There have been only a handful of moments when she seemed troubled, afraid, or anxious. At least two, perhaps three, of those occurred last summer or fall. During the first two, she was able to express her feelings of concern about not knowing who she is and where she was. There have been a couple since that time when she was unable or unwilling to explain why she seemed so troubled. In each case, I focused on trying to comfort her. That worked.

She had a similar, though less intense, experience yesterday morning. At 7:30, I noticed that she had gotten out of bed and was entering the bathroom. I waited until she come out and went to her. When I reached her, I was looking for that smile I mentioned in a post yesterday. She wasn’t smiling. Instead, she looked very puzzled. I sensed this was another moment that might be an anxiety attack. I walked over to her. She said, “What now?” I put my arms around her and said, “Right now, I just want to hold you.” We held each other tightly for a moment before I suggested we go over to the bed.

At first, I thought I would help her into bed and try to comfort her as I sat beside her. I had a second thought and said, “Would you like me to get in bed with you?” She said she would like that. I took my shoes off and, fully clothed, got into bed. I asked if she could tell me what was troubling her. She said, “I don’t know.” I said, “That’s all right. The important thing is that we are together.” She agreed. Neither of us said a word for another thirty minutes before she fell asleep. Not wanting to wake her, I stayed with her another ten minutes. She opened her eyes as I started to get out of bed. I said, “I’m going to the kitchen. I’ll be there if you need me.” She smiled and closed her eyes. The crisis had passed.

This experience is another example of how well Kate’s intuitive abilities are working. It makes me think of two things. First, countering her feelings of anxiety or fear with a response that engenders comfort and security is the best approach.  Before Alzheimer’s entered our lives, I would have have asked what was troubling her, and she would have been able to give me an answer. We would have talked about it. I would have tried to think of a rational way to address the problem. In this case, she couldn’t explain what was wrong, and I have learned that it doesn’t work to try to “fix things.” I am reasonably sure that this moment was like the others. She couldn’t understand anything – who she is, where she was, or what was happening to her. Telling her she has Alzheimer’s didn’t seem like the right thing. The only thing to do was comfort her. My words were of little importance. I only had to be with her. Once again that worked.

I believe there is something else that is relevant. In another post yesterday, I mentioned that she is still able to learn some things intuitively. That seems to be happening with our relationship. She is increasingly dependent on me and is aware of it. In recent months, she has been especially appreciative of things I do. Some of this comes immediately following something specific I have done. Other times, it comes out of the blue. She says things like, “I’m glad I’m with you. I couldn’t find my way home.” She also says, “When I am with you, I feel safe.” I don’t think that arises from any special fear of others. I think she may be afraid when she doesn’t know the people around her or where she is. I’ve become a “security blanket” for her. I think that is one of the reasons she sometimes wants me to stay with her and the sitter. She is comfortable with them, but the amount of time and range of experiences she has with them can’t lead to the same feeling of security. Of course, all husbands and wives develop a certain amount of interdependence, but I am talking about a feeling that goes well beyond the way she felt before Alzheimer’s. This feeling has increased with her dependence, and, up to now, has helped to ease her anxiety and/or fear in moments like yesterday.

How long will this feeling that I can offer her security last? I hope forever. That reminds me of a quote of Maya Angelou’s that I posted recently. It seems even more appropriate to me now.

“. . . People will never forget how you made them feel.”

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Morning Confusion Again

Once again, Kate was quite confused yesterday morning. It seems like this is becoming a regular pattern. Let me repeat that forgetting where she is, what my name is, and that I am her husband are not new. Two things are different. First, it is becoming more typical than before. Second, it seems like she is in a deeper state of confusion. At least, that is the way I interpret her facial expressions as well as things she says. Yesterday she repeated her questions about my name, our relationship, and her name multiple times very close together as if she didn’t even hear me the first time (second time, etc.). She was apparently “feeling” a sense of confusion or disorientation that disturbs her. Normally, when she asks my name, she does so very naturally without any special emotion. She doesn’t seem disturbed at all.

I realize “disturbed” doesn’t provide a very precise way of telling you how she felt. I use it to convey a feeling that goes from only “mildly” disturbed to “seriously” disturbed. Last summer when I first saw her this way, she was “seriously” disturbed. What I saw yesterday morning was mild compared to that. It might be better described as “puzzled.” She knew something was wrong and couldn’t understand why, but she was not distressed. This was neither a panic nor an anxiety attack. The fact that I was able to relieve her discomfort so quickly is a good indication the situation was not as dire as it has or could have been.

She wanted to remain in bed, but I suggested that she might feel better if she got up. I told her she was often groggy when she wakes up but soon recovers. I also mentioned that she has photo books of family that I thought would help her. I had no trouble getting her up, but I needed to help her every step of the way. She was almost helpless. One notable exception occurred when I started to help her to a standing position beside the bed. She said, “I can do that myself.”

Once she had gone to the bathroom and dressed, I took her into the family room. I picked up the “Big Sister” album and showed her the cover picture. She smiled immediately and commented on the smiles of her and her brother. I asked if she knew who they were. She said, “He’s my brother. <pause> What’s his name?” I told her and said, “And who is that with him?” She said, “Me.” I directed her to the sofa and suggested we look through the book.

She opened the first page with the introduction to the book and started to read it. She struggled, so I read it to her. She continued to try to read it herself but asked me to help her with most of it. This is another case of knowing that her difficulty must be from her Alzheimer’s and not her actual vision. I would say she spent at least five minutes on that page. I reminded her that this was a gift her brother had made for her. She got tears in her eyes. She has looked at the book many times before. I don’t recall her getting that emotional and so quickly. At this point, the only photo she had seen was the cover picture.

When she turned the page, she was able to see photos spread across two pages. She must have spent ten minutes looking them. She revisited each picture several times. Almost every time she asked me to tell her who the people were.

As I suggested in a previous post, seeing the pictures didn’t improve her ability to remember names and faces, but it very quickly alleviated the “sense” of confusion. All of a sudden she was focused on the pictures, not on how she felt about not knowing where she was or who she was. It was obvious that she was getting a sense of connection to her family even if she was unable to consistently identify each person. She seemed to feel “grounded.”

The sitter came in while she was on the second page. I suggested to Kate that they look at the album together. She liked the idea. When I said I was about to leave for Rotary, Kate wanted me to stay. She somewhat grudgingly relented but without a fuss. I’m sure she was engrossed with her the pictures as soon as I was gone.

At 3:30, I had an appointment with my ophthalmologist, also Kate’s. I asked Cindy to meet me with Kate at the doctor’s office. That worked out well. From there we went home for a short break and then to dinner. Kate was doing perfectly fine. We closed out the day at home watching a YouTube video of a BBC PROMS concert celebrating the music of Rogers and Hammerstein. It was one more successful day after having to address an emerging problem in the morning. I know this won’t last forever. We’ll enjoy it while we can.

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Our Trip to Nashville to See Ellen

Yesterday we paid a visit to see Ellen Seacrest, one of our longtime friends who lives in a memory care facility in Nashville. It is now three and a half years since she had stroke. It affected her mobility and her speech. For a while the speech improved, but it has been much worse since having a couple of seizures a year ago. During our last two visits we could only understand about 25% of what she said. Yesterday it was even less. For the first time, that may have had an impact on Kate’s response to her.

We met in the activities room. Kate noticed some jigsaw puzzles on a shelf and brought one to the table where we were sitting. She never opened it, but she never seemed as engaged in the conversation as she had been in the past. It also seemed like Ellen directed more of her comments to me. That could have made Kate feel less involved. On our next trip, I think I will make more of an effort to excuse myself for a few minutes and let them have some private time. I am sure Kate would take more initiative if I were not in the room.

After we were there about an hour, I brought out my iPad. Ellen was enthusiastic about viewing musical performances as we have done for the past eight months or so. Apart from her career as an ETV producer, Ellen directed her church choir for almost forty years. I selected videos of the Wartburg College Choir in Lincoln, Nebraska, thinking that might be of special interest. I was right. She loved it. What’s more, Kate did as well. They were seated side-by-side with eyes fixed on the iPad. It was hard for Ellen to express her feelings except by the expression on her face, but she did convey that she liked the pageantry of some of the videos. Several of them featured the choir’s entry as they marched down the center aisle to the choir loft. Several of the pieces were accompanied by a small orchestra. I don’t think she has been to church since her stroke, so it was an especially meaningful experience for her. I am glad we got to share it with her.

After we left, we went to dinner. I was reminded of how closely I need to watch Kate when we are out. We were seated near the restrooms, but I always walk her to the door and often open it for her. Then I wait near the door for her to come out. As usual, it took quite a while for her to finish. I noticed others who had entered and come out. I went to the door and pushed it open enough to see Kate was standing at a sink washing her hands. A woman and her daughter were at the sink beside her. I closed the door assuming she would be out shortly. The mother and daughter came out, but Kate didn’t. I went back to the door. This time I knocked and slowly opened it. Kate was walking to the door. I don’t know what happened, but she apparently didn’t remember where the door was. She thanked me and showed no sign that anything had happened. It reminded me of times when I have lost and found her. She was very calm.

When we got to our table, I showed her where she had been sitting. That seems a simple thing, but she never knows where to sit. She often doesn’t understand when I show her. As she started to sit down, she said, “Where is my husband?” I said, “Right here.” She looked at me and realized she hadn’t known I was the one ushering her from the bathroom to her seat.

After dinner, I was leading her to the exit when I got too far ahead. I looked back. She was about fifteen feet behind and looking for me. I walked back and led her out. She looked at me and said, “Where is my husband?” I looked at her, and she realized again that I was the one holding hand to the car.

In both of these instances, I was struck by two things. First, was the fact that she said “my husband.” She is far from completely forgetting that. It is simiar with my name. She still occasionally calls me Richard when she needs something. Most of the time she just says, “Hey.” (That reminds me that the sitter told me that on Friday, Kate asked, “Where is my daddy?”) Second, these were clear instances of a problem with her sight that relates to her Alzheimer’s and not to her cataract. We know that she can now see out of both eyes. When she misses things, it can’t be a problem with vision.

I sense that we are going through another transition when she wakes up. I’ve previously noted that she is often confused, but the past few days she has seemed more confused than usual. She hasn’t remembered my name or relationship. It is not unusual for her not to know that she is at home, but that has been more puzzling to her when I tell her. It’s like she is in a deeper fog than usual.

I am settling into telling her I am her husband if she asks about our relationship, but I am not intending to dispute her if she thinks I am her daddy. I just don’t want to create any unnecessary problems for her. She is still alert enough to recognize that she should know she is in her own house and that I am her husband. Sometimes it can be difficult to know exactly what to say.