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Kate and The 4 A’s of Alzheimer’s

Last night was pizza night for us. When I told Kate I was going to take her out for pizza, she beamed. That was no surprise. She and I always enjoy pizza. Less than an hour later, we were sitting at the restaurant where our server had just delivered it to our table. I served Kate and then myself and said, “You and I love pizza, don’t we?” She gave me a puzzled look and said, “What is pizza?” I said, “That’s what we are eating right now.” She said, “It’s good.” It was just like her first time to have it.

Kate’s vocabulary has been declining for several years, but I am still surprised when she forgets some of the most common words like pizza and black olives. Like everything else, forgetting in this instance doesn’t mean she won’t remember “pizza” the next day, but it is one other sign of the progression of her illness.

She has a related speech problem that has also been getting worse. She wants to say something but can’t recall the word she wants to say. Sometimes she seems to remember the word, but she mispronounces it. The only example that comes to mind at the moment is “shoes.” When she is getting dressed, she asks, “Where are my shows?” She usually recognizes her mispronunciation and tries again. When she still misses, she says, “You know what I mean,” and I usually do. Sometimes I don’t.

These speech problems are collectively referred to as “aphasia” which is common among all forms of dementia. Kate’s good friend, Ellen, has aphasia that is the result of a stroke and several subsequent seizures. Her problem is similar to Kate’s mispronouncing words. The major difference is the severity of the problem and that the words that come out of her mouth are “gibberish” while Kate’s are an approximation of the word she is trying to say.

I haven’t said anything about aphasia before. I only mention it because Kate’s problem is more noticeable now. Her failure to remember “pizza” led me to Google aphasia and dementia. According to the website of the National Aphasia Association it commonly begins as a subtle disorder of language, progressing to a nearly total inability to speak, in its most severe stage. The type or pattern of the language deficit may differ from patient to patient.

As I browsed through the results of my Google search, I ran across the website for verywellhealth.com. It describes the 4 A’s of Alzheimer’s. I read it in an effort to get a better grasp of where I might place Kate on the 7-stage model for the progression of Alzheimer’s. That confirmed my prior belief that she is in Stage 6 and, perhaps, in the latter part of that stage though still not approaching Stage 7. I should add that there are no clear guidelines about the length of the various stages. They can vary widely from one person to another.

The remaining three of the 4 A’s of Alzheimer’s are amnesia, apraxia, and agnosia. Amnesia requires no explanation. That is the loss of memory we most commonly associate with the disease. Kate has clearly experienced that problem, and it is very severe at this point. The other two terms are generally less familiar to those who haven’t dealt with dementia.

Quoting from verywellhealth.com “Apraxia is a deficit in voluntary motor skills.” Kate experiences many of the symptoms. Her biggest problem is walking. She recognizes that and is careful when she walks but occasionally stumbles over things. She also has trouble sitting down and getting up. She is very slow in getting into chairs or booths when we eat out. There are a variety of other signs. For example, she has difficulty holding on to her pills when I hand them to her. That is mostly because she tends to hold her hand sideways, and the pill falls out. It is also a problem eating, especially something like ice cream. The way she holds her fork or spoon is often tilted so that whatever she is trying to eat falls or drips on her lap or clothes. Something else that I am just recognizing is that she doesn’t do a good job washing her hands.

Quoting again from verywellhealth.com, “Agnosia is the impairment of the ability to receive or correctly understand information from the senses of hearing, smell, taste, touch, and vision.” I would say that agnosia is the least of Kate’s current problems. The few signs I see are in her lack of critical ability in differentiating the things she senses. For example, she has a tendency to think all of the musicians she hears are superb. The same is true for the actors and overall performances of the various theatrical events we attend. Even in her perception of the beauty of nature, she sees almost everything as beautiful. We have some plants that are looking rather “bedraggled.” They still look beautiful to her.

Here are the symptoms of Stage 6 of Alzheimer’s from the website of Alzheimer’s.net.

  • Confusion or unawareness of environment and surroundings
  • Inability to recognize faces except for the closest friends and relatives
  • Inability to remember most details of personal history
  • Loss of bladder and bowel control
  • Major personality changes and potential behavior problems
  • The need for assistance with activities of daily living such as toileting and bathing
  • Wandering

Of the seven symptoms, only two are not applicable to Kate, major personality changes and wandering. Bladder and bowel control are not too serious at this point.

So I continue to believe Kate is in Stage 6. I would like to postpone Stage 7 as long as possible, but that is not under my control.

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The Intensity of Kate’s Intuitive Abilities

I have often mentioned how much pleasure Kate and I receive because of her intuitive abilities. Recently, I indicated that they seem even more intense now than they used to be. Several things have happened in the past few days that reinforce my belief that they really are more intense now than before. All of them involve behaviors I have previously observed, but they were so much stronger than normal I wanted to pass them along. They are all experiences that involve her emotional response to visual stimuli.

Many of them involve her feelings about trees and flowering plants. She seems enraptured wherever she sees them. The plants on our patio and the trees on the neighbor’s property behind our house get most of her attention. She stops to look at them almost every time she passes through our family room. It also includes the flora she sees whenever we are in the car. This occurs even in areas that I wouldn’t say are especially beautiful, like some of the areas on either side of a highway. One of those instances happened at Chalupas Monday night. As we entered the restaurant, she saw two large pots with a grassy plant similar to liriope. They looked desperate for water. She immediately reacted to them and told the server who greeted us how beautiful they were. They have been in the same place for as long as I can remember, but this was the first time she has reacted to them.

The strength of her feelings is illustrated in a variety of other ways. She bought a ceramic cat many years ago that she used to keep in the bath off our our laundry room. It was something of a surprise to visitors who saw it at the base of the toilet. I moved it to the family room sometime in the past year or so. It now resides on the floor near the doorway from the family room to the kitchen. We pass by it every time we leave the house. It is only recently that she has taken special notice of it. Now she stops and says hello each time she walks by. A couple of weeks ago, she said we ought to give him a name. The next time she walked by him I told her his name is Pepper for Dr. Pepper since that is her favorite drink. She can’t remember the name, but she always likes it when I tell her.

She also takes greater interest in family photos each day. Two of those are of our daughter in her wedding gown that sit on a dresser in our bedroom. They catch her eye every morning. She doesn’t remember they are of our daughter, but she loves looking at her and her smile. The other pictures are grouped together as we leave the family room. Two of them are of our son when he was a child. Another is a picture of me when I was about twelve. There is one more of her father. It has become a ritual to stop and look at these photos each time we go out. She surprised me yesterday morning when she saw her father. She said, “I know who that is.” I said, “Who?” She said, “My father.” That was the first time I recall her recognizing this photo of him. On several occasions recently, she has picked up the photos of our son and asked if she could take them with us. I let her take them to the car. Once we are in the car, she usually gives them to me. I find a secure place to put them and return them to the house when we get home. The walk through our family room is turning out to be something that energizes her as we leave.

Night before last, she went to the bathroom before we went to dinner. She noticed a ceramic container with artificial flowers beside the sink. She had purchased it on our last trip to Fort Worth. Until last night, I don’t remember her saying anything about it. But she brought it to me. She said she loved it and asked if she could take it with us. I told her she could. It remained in the car until we got home when I brought it inside and put it back where she had found it. She not only received pleasure from seeing it but also being able to take it with her.

Another example occurred after lunch yesterday. As I turned into the driveway, she was puzzled about why we were here. I said, “This is our house. You’ll recognize it once we are inside.” I gave her a tour of the house similar to what I have done a couple of times in the past but much shorter. I pointed out a portrait of her grandfather and another of her mother, wedding photos of her and our daughter Jesse, and other artwork. She raved about everything she saw but never responded as though she had ever been here before.

When we circled around to the family room, she wanted to rest. She lay down on the sofa looking toward the backyard. She responded to that with enthusiasm. In addition, she looked around the room, and commented on how much she said she liked it. She said, “This is beautiful, and I haven’t even seen the rest of the house.” I told her I would be glad to show it to her. She said, “Not right now. Maybe tomorrow. I just want to rest.” And that is just what she did for the next three hours. She started working on her iPad but put it down after a few minutes. She was never asleep. I offered to go through family photo books, but she preferred to lie there. Like the day before, she was content. By the way, the battery on her iPad was at 81% of capacity this morning when I brought it to the kitchen to be charged. That makes three days in a row that the iPad hasn’t seen much use.

Experiences like these are not only important for her, but they are for me as well. It is sad that the tour of half the house did not jog her memory at all. On the other hand, she enjoyed the house tour. It’s an illustration of how each of us is still able to provide pleasure for the other. At this stage of her Alzheimer’s, that is priceless.

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Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.

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Confusion and Mood Control

When I woke Kate yesterday, she was confused about me. She was very suspicious of me. This was unlike the day before when she didn’t recognize me as her husband from 5:00 until I went to bed last night. At least she seemed comfortable with me. That wasn’t true yesterday morning. It was somewhat awkward for her because she was completely dependent on me to get her to the bathroom and ready for the day.

I decided not to push her or try to explain anything. I just helped her get ready. When she was dressed, I told her I wanted to show her something. She followed me into the hallway off our bedroom where we have several pictures of her family. We stopped at the first one. I said, “This is your grandmother Franklin.” She smiled, and her eyes lit up.” I told her that was her father’s mother and there was something special about her that she would like to know. I said, “She was the first member of your family to go to TCU.” (a bigger smile) Then I told her we have a grandson who is the 60th member of her family to attend TCU, and his sister will join him in the fall. She was coming around.

The next picture is one of her mother that must have been taken in her late teens. It’s a beautiful photo and one of my favorites. I explained that she was her mother. It was no surprise that Kate was drawn to her smile and commented on how beautiful she was. We continued down the hallway and looked at pictures of her grandfather as well as her father. By that time her mood had changed dramatically. I don’t mean to suggest that she now understood that I was her husband, only that she was happy.

From that point we went into the family room where I showed her several other family pictures. As usual, she also admired the plants on the patio. Then I took her into the kitchen for her morning meds, and we left for lunch. I played music that I know she likes all the way to the restaurant.

When we returned home, I asked if she would like to work puzzles on her iPad or look at some of her family photo books. She noticed an album of her father’s family and picked it up. I asked if she would like me to help her with it. She said no. I went to the kitchen work on my computer. An hour later, she wanted to rest and spent the next two hours lying on the sofa. I brought my laptop into the room so that I could sit with her. I don’t think she ever went to sleep. After a while, I asked if we might look at family pictures together. She said she would but “later.” She said she just wanted to relax. I let her do that another half hour before going to dinner.

After dinner, she picked up a coloring book I bought for her about two weeks ago. She hadn’t shown any interest in it before. This time she opened it and spent at least forty-five minutes going through it. It is a big book – 200 pages. I was surprised she could spend that much time looking at it. She didn’t even take the crayons out of the box. When I suggested that we go back to the bedroom, she said she just wanted to finish the last few pages. I told her that would be fine. I was very curious as to what she was doing. There is nothing to read, only cartoon-like figures and shapes to color. When I looked over her shoulder, I saw that she was meticulously going through each page, touching each drawing or part of a figure on each page. She was pushing them the way she touches the screen of the iPad. Of course, nothing would happen, and she moved to the next one. I am still puzzled that she went through the entire book that way. She never appeared to be frustrated. Looking at her from across the room, it appeared that she was enjoying herself. It’s just one other thing that puzzles me.

She wanted to do something else once we went to the bedroom. She didn’t want to work on her iPad or look at photo books. She said she would like to read something. I gave her the three-ring binder that I call her “Memory Book.” It contains a variety of information about her and her family as well as our courtship and marriage. When I gave it to her, she didn’t know what to do with it. I explained that it was information about her life and that she could just read through it. She still didn’t understand. I read the initial information and then turned it over to her. She started touching selected words on the page just the way she had done with the coloring book earlier. When I explained that the book was different than her iPad, that touching the words would not take her to something else, she closed the book. I decided it was best not to push it.

She was already in bed. I told her I would put on some YouTube videos and pulled up a mix of videos of The Three Tenors, Pavarotti, Andrea Bocelli, and Andre Rieu. She listened to the music for over an hour while lying in bed. She was very happy, just another example of the power of music.

We experienced only one other hiccup before going to sleep. When I got into the bed, I frightened her. She apparently had forgotten I was there. When I spoke, she realized who it was and was relieved.

As you can tell, there is a lot going on in our lives right now. Apart from these moments, we had a good day. We enjoyed good moments together, and, except for frightening her, the day ended on a high note. What is encouraging is that even with her moments of confusion and feeling down, I still find it possible to find a way to bring her back. I hope that is something that will endure for a while longer.

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More Unusual Things

Kate continues to make changes that I see as signs of the progression of her Alzheimer’s. One of those has been that she has paid less attention to her iPad and more attention to her photo books in the past couple of days. The good thing about that is that it provides her with two different activities instead of just one.

We often think of the memory problems of people with dementia as forgetting the names of people, places, and things. It also involves procedures or steps to accomplish a task. Kate is having more problems with these kinds of things. For example, she has started asking me what to do with her napkin when we go to a restaurant. Last night I told her to put it in her lap. She didn’t understand and asked me to show her. I got up and placed the napkin in her lap. Similarly, she is has trouble knowing where to put the flatware. When she brushes her teeth, she sometimes forgets to put toothpaste on her brush. I have started doing that for her. She is dependent on me for help with a host of other things like that.

We had an unusual experience around 1:30 this morning when she was disturbed by the way her nightgown had crept up. She tried unsuccessfully to straighten it out. Then she wanted me to help her. I had trouble because she couldn’t understand when I asked her to roll over so that I could pull it down. At one point, she said it was all right. The next moment she complained again. We went through the same routine a couple of times. I got out of bed and went around to her side. I suggested she stand up to make sure we had it pulled down all the way. She couldn’t understand what I wanted. I did the best I could and didn’t see any sign there were any annoying wrinkles in the back of her gown. She was finally calm and said, “What now?” I told her we could go back to sleep, and we did.

An hour later, she said, “Where am I?” I told her. Then neither of us said anything else. She was pulling her hair as she does so often when she goes to bed. I don’t know how long she was awake. I do know that she spoke to me an hour after that. I don’t remember what she said.

I wish I knew exactly what she is thinking. My impression is that her brain is trying to process a lot of things that she can’t understand. Everything must seem terribly confusing.

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Sunday in Nashville

We had a nice day in Nashville yesterday. I had made noon reservations for lunch at Maggiano’s near our hotel, but we got there at 11:15 because Kate woke up earlier than I expected. I always like it when she wakes up on her own. That means I don’t have to be concerned about waking her and the challenges that sometimes presents.

We had a good meal and a pleasant time. The last time we were there it was Father’s Day and a little noisy. It was much quieter yesterday and very relaxing.

Before leaving, Kate went to the restroom. I took the opportunity to go to the men’s room rather than waiting outside the ladies room. Moments after I went in, I heard her call me. When I opened the door I saw her looking around for me. She expressed a big sigh of relief when she saw me. I felt bad about not being there as she walked out, but she came out so quickly. She could not have used the toilet. I suspect she got confused and just turned around and came out.

As we left the restaurant, Kate saw a poster with a photo of Frank Sinatra. She stopped to look and naturally asked me who it was. We had been to this restaurant several times before, and neither of us had noticed it. I chuckled because she always asks who he is in posters on the wall at Andriana’s when we are there. She said something to the hostess who told her that Sinatra died some time ago. Kate said, “He did. I didn’t know that.”

Our visit with Ellen went well although understanding her is a big problem. She hadn’t declined since last time, but it is hard to have a good conversation when you can only understand about 10% of what she says. I relied on YouTube videos that she and we enjoyed until Emily, the music lady, arrived to entertain the residents in Ellen’s “neighborhood.”

As we gathered around the piano, one of the staff dropped something that made loud noise at the nurse’s station. Kate is getting increasingly sensitive about surprises, especially sudden noises. She responded audibly that was almost as loud as the noise that frightened her. One of the residents spoke up quickly and told Kate that she had the same problem.

Remembering how Kate had sung, danced, and cheered last month made me eager to see how she would react to the music. She did enjoy the music and sang along rather quietly but was never tempted to do any of the things she did last time. I guess she was just in a different mood. She was more like herself than the previous visit.

Later as we drove to Knoxville, I told Kate we were close and would stop for dinner before going home. She said, “I don’t have any money.” I told her I had money. She said, “I will pay you back when we get home.” When I parked the car at Andriana’s, she again told me that she didn’t have any money. I told her that was all right. It was all “our” money. She said, “I guess that’s right.” She quickly forgot, however. As we walked from the car to the restaurant, she told me she didn’t have any money. I told her I would pay. She said she would pay me back. One other time she mentioned it while eating. This was something unusual. I don’t ever recall her saying this before.  Of course, it fits if she thought I was a friend instead of her husband. It would still be the first time she has raised a question of her paying for anything when we are together. On quite a few occasions, she has been concerned about not having money when I leave her with a sitter. In those cases, I have always told her that I left money or a card with the sitter.

While we were waiting for our meal, she asked our server if she knew her name. The server said, Yes, it’s Kate.” Then Kate asked the server’s name. This was shortly after the server had introduced herself since she sensed that Kate had not recognized her. The server said something about “your husband,” and Kate said, “We’re friends.” I said, “Very good friends.” Kate said, “Yes.” All of our servers know about Kate’s Alzheimer’s, but this particular server has had the opportunity to observe her memory problems more than any other. I don’t think it’s because Kate is more comfortable with her. I believe it is just a chance occurrence.

I mentioned earlier that Kate had taken interest in a poster of Frank Sinatra when we had lunch at Maggiano’s. At dinner, she may have set a record for the number of times she said, “Who is that?” while looking at a poster of him at Andriana’s. I didn’t count, but I am sure it was well over ten times, some in rapid succession.

When we got home, she started going through two of the guest rooms. She acted as though we were moving, and she needed to decide what to take with us. She went into a guest room and picked up a couple of things. I suggested we relax a while and that she could work on that tomorrow. She agreed.

When we got to the bedroom, she asked what she should do. I told her she could start by taking the pills I had put on her bedside table. It looked like she was going to do it but started to undress for bed. It seemed like she was just randomly selecting what to do although she was asking me to tell her. She didn’t seem to follow any of my instructions after asking for them.

While I was brushing my teeth, she called to me and said, “Where is he?” I asked who she was talking about. She said, “You know.” I told her I really didn’t and that she and I were the only ones in the house. She was puzzled but didn’t pursue it further.

She went to bed almost an hour before I did. When I got in bed, she was still awake. We talked about having had a nice day and that we have many nice days. That led to a comment or two about our marriage. Then she said, “We are able to talk to each other. We’re able to be really honest with each other.” Then she suggested something I never fully understood. She talked about how our relationship could grow even further by talking with other people about it. I said, “Do you mean a counselor?” She said, “That could be, but I was just thinking about people we know.” At first, it sounded to me as though she thought we had a problem we needed to work through. The more the more she talked the more it sounded like just improving on the relationship we already have. I don’t know how long she talked, but she sounded very thoughtful as she considered the benefits of exploring ways of enhancing our relationship.

This conversation and a couple of others we have had recently has impressed me with her rational ability to think through something like this. Sometimes she says that I underestimate how smart she is. She may be right.

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A Good Evening at Casa Bella

Jazz night at Casa Bella last month did not go as well for Kate as it usually does. Two differences accounted for that. The first was the way we were seated. I sat diagonally across from Kate instead of directly across from her. That meant she would forget where I was and was a bit insecure. It also made it more difficult for her to participate in the conversation as no one sat beside her until I took that seat a little later. The second was the music itself. Most jazz nights include an abundance of old ballads that everyone our age easily recognizes. A new group of musicians performed, and their selections tilted toward less vocal and more contemporary jazz. It was not something that Kate enjoyed. I understood that at the time. Nonetheless, I couldn’t help being concerned about future evenings and what they might be like.

I am glad to report that we had a good time last night. I made sure that I sat across from Kate so that it would have been hard for her to miss me. We sat with the couple whose company we have enjoyed for the past five to six years. Late in the evening, the couple’s daughter and her husband joined us. We have also known them for many years. The musicians were the same group as last month, but they played a lot of old ballads familiar to the audience. The crowd was made up largely of seniors, mostly 65 and older. It was a very receptive audience. Of course, my only concern was Kate, and she enjoyed the evening as well. That is what matters most.

On a few occasions, I have said something about Kate’s eating habits. Though she does use her fork most of the time, she also picks up her food with her hands. I was especially mindful of that last night. We split a mahi piccata with linguini. She had finished most of her meal when I noticed that she was picking up the last bit of linguini and the capers with her hand. I don’t know whether anyone else at the table saw her, but it is the kind of thing that will be noticed sometime. It makes me wonder if we will reach a stage when I think it best not to be at a table with others. So far, it hasn’t been a problem. Even if our friends notice, they are very understanding.

Day before yesterday at lunch, we had a similar experience. She eats most sandwiches by taking them apart, separating the meat, lettuce, tomatoes, etc. Then she usually picks up the various pieces in her hand. That day she had a hamburger. I cut it into four quarters to make it easier for her to handle, but she took everything apart anyway. To me it looks a bit like a child’s plate with all the pieces of her hamburger strewn about, but there is something about sorting through the items that she likes. It could be that she is looking for things she might not like, perhaps onions, although I am very careful to omit onions from anything I order for her.

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A Good Day, But Not Without Confusion

At 7:45 yesterday morning, I heard Kate make a sound and went to the bedroom. She was awake and smiled at me when I entered the room. I sat down on the bed beside her. She was wide awake, not at all groggy. She was also in a cheerful mood. It was a great way to begin the day.

I assumed that she just wanted to get up to go to the bathroom, but I soon discovered that she was ready to start the day. As I helped her dress, she wanted to do as much as she could and said, “I’m smart you know.” That began a conversation in which she said that women are as smart as men. She questioned whether I believed that. I told her I did. She said, “Good. You gave the right answer.” She said, “Someday women are going to be doing the same things as men.” I told her there were already changes being made. I told her about the enrollment numbers of women in college and in several different fields like medicine, law, and business. She was surprised and pleased. This was not the first time she has brought up the topic of the roles of men and women and specifically the discrimination women have faced. It comes up periodically.

We got ready leisurely and arrived at Panera at 9:00. As we walked in, we stopped to talk with several friends who regularly come for coffee and conversation after morning mass. Because we don’t get to Panera very often, it was especially nice to visit with them. Kate was unusually chatty and funny. One of the men said something about himself. A woman seated a couple of seats from him quickly contradicted him. Kate said, “You must be his wife.” Then he said something to which Kate had a funny comeback. I wish I could remember what it was. It was the kind of thing you might expect from someone who jokes frequently. It was clever and so quick. We all laughed. It was especially funny coming from Kate since it was something unexpected. She didn’t sound at all like someone with dementia.

After an hour, she was ready for home. That didn’t surprise me. She had missed at least two hours of her normal sleep by getting up so early. I also expected she would rest when we returned home. That proved to be correct.

It was a day for the sitter and my day for the Y and to have coffee with my friend, Mark Harrington. We arrived home from lunch a few minutes before Mary arrived. She came in and greeted Kate while I brushed my teeth and got myself ready to leave.  When I told Kate I was leaving, she said, “You’re leaving?” This is now a common question, but she doesn’t seem as concerned as she often does. I told her I would be back. I left with a good feeling.

Upon my return home, Mary was seated in the family room. I usually expect to see Kate resting on the sofa, but she wasn’t in the room at all. Mary called to Kate to let her know I was home. She was in the back of the house. I assumed she had been resting in one of the other bedrooms, but Mary said that she had been up a while and had been walking through all the rooms in the house. She told me that she had also gone outside on the patio. Then Kate walked into the room and said, “Isn’t this a great room?” I recognized right away what was going on. For well over a year she has often thought our house belongs to somebody else and that we have been staying here. For most of the past two or three days, however, that sense has been almost constant. Her going from room to room yesterday reminded me of the one-hour “tour” she and I took of the house about a year ago when she didn’t recognize it as our home. We went to dinner right after Mary left. As we pulled out of the garage, Kate said, “Is this the first time you’ve been to my school?”

She did a little better on her iPad last night but still had problems. She didn’t get into the store as much because she asked for my help before hitting the button that takes her there. Although I spent as much time helping her, I felt better because she didn’t experience the frustration that she had the previous night. I am better able to take the demands on me to help her than I am to see her discouraged.

It was also a day when I felt she recognized me as her husband. I could be wrong. I never asked, but she never said anything to make me think she didn’t. On the way to lunch, she said, “I like you. I like being with you. I even love you.” She called me by name once in the afternoon. She also expressed her appreciation to me for being patient with her. This reminds me of something she said at lunch the other day. She had torn a paper napkin into three pieces and placed her glass of tea on one, her knife and fork on another, and her bread plate on the third. I said, “It looks like you’re all ready for your meal.” She said, “Thank you for being so understanding of all the funny little things I do.” I wonder, “Does she recognize these things really are unusual?” I would love to know all that is going on in her brain.

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Something New

About 7:30 yesterday morning, I noticed on the video cam that Kate was sitting up in bed. She had stern look on her face. I asked if she wanted to go to the bathroom. She said no. I said, “What would you like to do? I would be glad to help.” She motioned me to sit in the chair beside the bed and said, “You start.” I said, “Start what?” She said quite firmly, “You know.” I told her I really didn’t and that maybe she had just had a dream about something. She was emphatic that she wasn’t dreaming. Again, she told me “to start.” I told her I wasn’t sure what she wanted me to say. She said, “Then why are you here?” That led me to take another approach. I told her my name and her name. Then I proceeded to tell her about our meeting and our courtship at TCU. I gave her a synopsis of our getting married, going to graduate school, jobs, having children, and the places we had lived right to the present. As I talked, she started smiling. Her mood began to change. When I got to the end of my story, I said, “We’ve been happily married for fifty-six years, and I love you very much.” She smiled and said, “I love you too.”

I gave her a hug and asked what she would like to do now. She said, “I don’t know.” I told her it was just 8:00 and that she usually liked to sleep a little longer. She told me that is what she wanted to do. I pulled back the cover, and she got back in bed. She slept until 10:00 when she got up for good. She was in a good mood and expressed no confusion at all. She was ready to go early enough that we were able to spend some time at Panera before going to lunch. I will never know what caused her to be irritated with me when she first woke up. I just hope it doesn’t happen again. If it does, I will probably take the same approach, that is, just talk about things that get her to think about the good times we have had.

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Update on Kate’s Changes

Although Kate did not experience any moments of discouragement or sadness, her memory and overall functional ability were no better yesterday. She was in a good mood when I went in to wake her. She smiled and responded to me as though she knew exactly who I am. I told her I loved her, and she said she loved me. As so often happens, she then said, “Who are you?” About forty minutes later we were ready to go to lunch. In the laundry room as we were headed to the car, she said, “I don’t know where I am or where I’ve been or where I’m going.” She said this without any sense of despair or anxiety, but she was perplexed.

We returned home just before the sitter arrived. Given her growing insecurity, I wondered how she would respond when I told her I was leaving for the Y and Mary would be staying with her. It turned out there was no problem. She showed no sign of insecurity at all. I was relieved. Then I wondered what I might encounter when I got home. That was not a problem either. She and Mary were talking when I arrived. Mary told me that Kate had wanted to talk. She said that Kate had told her about some group of which she was a part and that she was trying to decide whether to drop out or not. Kate didn’t seem to remember that at all. I couldn’t imagine what she was talking about either. Mary said goodbye and started to leave when Kate asked her to wait. She got up and walked over to Mary and said, “Let me give you a big hug.” I was very pleased. As I’ve said before, Kate has a kind heart.

At dinner she carefully placed her napkin on the table in front of her as if to use it as a placemat. It wasn’t long before she wanted a different arrangement of her knife and fork and the napkin. She tore the napkin into three pieces, using one part as a coaster for her iced tea, another for her knife and fork, and the third as a smaller placemat. Many times she asks me what to do with her napkin. She almost always gravitates to using it as a placemat. When she asks, I tell her it’s her napkin and that she can put it in her lap to wipe her hands when she needs it. That seems a difficult instruction for her to understand.

It was another day that she was tired and wanted to rest. We stayed in the family room only a short time before she wanted to go back to the bedroom. I brought her nightgown to her. She put it on right away got into bed. She planned to work on her iPad a while but forgot or changed her mind and called it a night. She is tired more often than she has been in the past.

In an email yesterday, my friend Tom Robinson read my post that Kate seemed to be on a more significant decline. He asked if it is possible this decline could be followed by a similar improvement. I told him that it is possible and explained that she regularly has moments when her symptoms are not as obvious as they have been recently. Today could be different than the past few days.

Having reflected on this, I think it is more complicated than any of us fully understands. Periodically over the past eight and a half years, she has exhibited changes in her behavior. I think one of the best examples is forgetting my name. The first time that happened, there was a tendency of me to conclude that she had completely forgotten and would never know it again. That was almost a year ago, and she still knows my name sometimes; however, she calls my name much less frequently now than she did then.

Kate’s behavior in recent days is different than I have seen in the past, but it is not surprising. She is exhibiting the kind of changes that accompany the latter stage(s) of Alzheimer’s. I don’t know that she will be this way today or tomorrow or the day after that, but I do know I will see more things like this in the future. I will continue to cherish the good times, but I will be sad at other times.