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Trying to Understand Kate’s Expressions of Her Feelings

Kate had another anxiety attack yesterday. This time it occurred in connection with a different kind of feeling. She wasn’t frightened by not having any memory. She was worried about being separated from me while the sitter was here. Here is the way the day unfolded.

We had a good morning. Unlike five other days in the past week, Kate showed no signs of anxiety at all. She wasn’t eager to get up for lunch, but she did so without any resistance. She was very comfortable with me. I like to think that she knew my name and relationship, but she didn’t say anything specific to confirm my suspicion. We had a nice lunch and were able to get back home in plenty of time to meet our sitter with ten minutes to spare. As I left, I told her I was going to the Y. She didn’t express any reservations about my leaving. She was tired and was resting on the sofa in the family room.

When I returned home almost four hours later, I encountered a very different situation. I heard Mary say, “There he is.” Kate said, “Where?” Then I walked into the room. Kate was seated on the sofa. She had a very worried look on her face. Mary said, “She’s been stressed.” When Kate saw me, she gave a big sigh of relief. I walked over to her. Even though she was relieved to see me, she remained upset. She said, “Are you my one?” She’s never referred to me that way, but I assumed that the word “husband” or “friend” wouldn’t come to her. I said, “I am your one.” She said, “I didn’t know where you were? I was worried.” She was more emotional than she had been when she experienced her attacks earlier in the week. I sat down beside her and tried to console her. She was appreciative, but it took her a long time to calm down. In fact, she repeatedly said, “I couldn’t imagine where you were. I knew you wouldn’t leave me.” It was thirty minutes later before she was calm again. I was surprised that she could retain a memory of her feelings for such a long time.

The rest of the evening was uneventful. As I have reflected on a number of recent experiences, I see a common thread. Her intuitive side is more “alive” now than in the past. Her feelings don’t seem to be different in kind than they were in the past, just more intense. I see that in her appreciation of music and beauty. It is very evident in her reaction to sudden noises, especially those that occur when we are in restaurants. The screams of babies and the noises of dishes as they are removed from tables by the wait staff cause her to make louder audible responses than ever before. She complains about the brightness of the sun when we walk from the parking lot into a restaurant and back again. She is bothered more than usual by the heat anytime she is outside. She is irritated by waiting. That happens at restaurants and also at the doctor’s office the other day. At several of our recent music nights at Casa Bella, she has been uneasy when seated at a table with more people than usual. She is also more easily irritated by things I say or do. She is very sensitive.

I am now connecting her anxiety attacks of this week as part of the same pattern. The loss of her rational abilities leaves her with only her feelings. While that is what provides her with a great deal of pleasure, it also brings with it a greater amount of pain than it would have in the past.

This is just one more thing that I didn’t fully anticipate. I have always tried to keep her safe and happy. This change is one that requires me to be more attentive to those things that are uncomfortable for her and minimize them as much as I can. I definitely need to work with her sitters to enlist their help when I am away from the house.

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Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

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The Fading Allure of the iPad

I made the following entry seven years ago on August 18, 2012.

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. 

Until I checked my old journal entries this morning, I hadn’t realized that Kate had been using her iPad for so long. At the time I got it, her primary “self-initiated” sources of pleasure were working in the yard (as much as six hours a day) and working on her computer. It’s been five or six years since she gave up the computer. It had become too difficult for her to operate. For a while the iPad was a mere adjunct to her yardwork. It’s been almost three years since she gave that up. That wasn’t because it was too hard. It related to the fact that she had pruned all the shrubs so severely that there was little for her to do. That was the major part of her yardwork although I have recently discovered that she must have been weeding as well. I say that because weeds had never been a big problem until the past two years. She obviously had been keeping them at bay.

When she stopped working in the yard, she was left with the iPad as her only source of amusement. The only thing she uses it for is to work jigsaw puzzles. She has used it morning, noon, and night. I haven’t kept track of the time, but I know that sometimes she must have spent as much as eight hours a day working puzzles.

I charge the iPad every day for her, but it is only in the past week or ten days that I have been especially attentive to the battery life left when I start the charge. My guess is that the average battery life has been somewhere between 25% and 45%. Sometimes it has been totally exhausted. Recently, the figures have been 89%, 88%, 45%, 91%, 75%, 45%, 92%, and 65%. That is a clear indication that she is using the iPad less now.

There are two primary reasons for the change. The first is that she is having increasing difficulty operating the program. The most common problem is that she gets into the store to buy more puzzles when she completes a puzzle. Just this morning, I taped a piece of paper over the upper right hand corner of the display. That is where the icon for the store appears. Like so many things, that could create another problem, but it should be one for me and not her. On other screens there is an “X” icon to exit that page and go back. I don’t believe she normally gets to one of those pages. If I can address that problem, it should make Kate’s life and mine a lot simpler.

There are other problems that I can’t prevent as easily. One of those is forgetting what to do with the scattered pieces. Thus far when this happens, I have been able take care of it by telling her just to put the pieces together to form a complete picture. Another involves her eyesight. She can’t see the lines of the frame against which the edge pieces should be placed. She seems to get there by getting near the line. When she is close enough, the piece will lock in place and can’t be moved. The other issue is that she is unable to associate similar colors or shapes to figure out where a given piece might go. She just seems to keep trying until she gets it right. Similarly, she can’t distinguish between the background color and design to identify places a puzzle should go. I have worked with her enough on this issue to conclude that is impossible for her to learn because of her poor vision.

Last night was particularly frustrating for both of us. I am surprised she persisted as long as she did. In fact, she only stopped working her puzzles because I suggested that she might be getting tired, and it was time to get ready for bed. Prior to that, she had worked on her iPad more than an hour. I was watching (trying to watch) the evening news. Throughout that time, I got up and down from my chair every few minutes to address a problem.

As you would expect, I am concerned about her giving up the iPad. That would create quite a void in her life. It would also add greater responsibility for me to keep her entertained. She does enjoy her family photo books, but they provide a different experience. They are not something that holds her attention as long as jigsaw puzzles. The puzzles also have the advantage of being more interactive. They require her to think more. While I can’t know for sure, I have an idea that she derives some sense of satisfaction from completing them. In addition, she likes the beauty of the puzzle pictures themselves.

One thing I know is that I won’t be able to control much of what happens. It will be helpful if my taping over the store icon works, but the other problems are more a function of the disease itself. I’ll just have to wait and see what happens.

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I spoke too soon.

Not long after uploading my previous post, I went back to the bedroom. I saw that Kate was awake and walked over to her. She was having a similar, but milder, attack like those she experienced the past four mornings. I said, “Are you all right?” She said, “I think so. I don’t know.” I told her I would like to help her if I could. I asked if she would like me to bring my laptop to the bedroom and stay with her. She nodded. I returned and put on some music.

She never went back to sleep. I doubt that she had been to sleep since getting up to go to the bathroom at 7:45. Around 9:30, she sat up on the side of the bed. She was still confused, but she didn’t seem to be troubled the way she was earlier. She said, “What now?” I told her I thought it might be good for her to get dressed and get her something to eat. I mentioned getting a muffin. She didn’t say anything, but she looked as though she had never heard of a muffin.

I helped her to her feet and told her I wanted to show her something. We walked hand-in-hand to the hallway outside our bedroom. We stopped at a picture of her grandmother. I told her this was somebody very important to her. Then I explained that she was the first member of Kate’s family to attend TCU. She was pleased about that. I was glad to see her response because a few days ago I mentioned TCU, and it didn’t mean anything to her. That was a first.

After talking with her about her grandmother, I focused her attention on the next photo. It was her mother when she was around 19 or 20. Kate didn’t recognize her but was taken with the picture. As she often does, she noted her mother’s eyes and smile. She commented more extensively than usual on this and other pictures that I showed her. I can’t remember exactly what she said, but she interpreted her mother’s personality based on what she saw in her mother’s face. By this time, she seemed just fine.

We went on to two other photos, one of her grandfather on her father’s side and then her father. From there we walked into the family room where I showed her a picture of our daughter’s twin boys when they were about 5 or 6. As we entered the room, she said, “You’re really helping me.” She always likes children whether in person or photos. Thus, she was enthralled at the twins’ picture. Again, she tried to interpret their personalities from what she saw.

I took her to the sofa and asked her to sit down so that I could show her something else. I picked up the “Big Sister” album and called her attention to the cover picture. This time she didn’t recognize either herself or her brother, but she was taken with the children, especially their eyes and smiles.

We talked about them for a few minutes. Then she said she was cold. She was still in her nightgown and bare feet. I suggested we get her dressed. I helped her stand up and, as we walked to the bedroom, she said, “I’m bouncing back thanks to you.” I was particularly struck by her recognition that she was “bouncing back.” It had been thirty minutes since she had gotten out of bed. I was surprised that she could remember how she felt that long ago. Once again, we had found our way out of what might have been a crisis. It’s a relief when this happens.

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Another Morning of Anxiety

As I have described the past three mornings, yesterday Kate’s memory was almost completely blank again. In some ways this isn’t unusual. Over the past year she has often not known where she is or who she and I are when she wakes. The difference the past few days is the anxiety that accompanies it. In the past, I would tell her. Then she seemed to be all right even though she might ask the same questions again right away. During each of the past few days she has been more concerned, even frightened, about not knowing these things. The first experience on Saturday was the most intense. It also lasted an hour.

Her experience yesterday was different in that it was milder and shorter in duration. She was very sleepy. I didn’t attempt to show her any pictures of her family. I focused primarily on comforting her. I did play the same music I had played the previous days. I got in bed with her. She began to relax and fell asleep within fifteen minutes. I brought my laptop back to the bedroom and stayed with her until it was time for lunch. She was fine when I got her up.

We met one of our associate pastors and his wife for lunch at Casa Bella. Kate has always liked him and his wife. She wasn’t talkative, but she enjoyed being with them. They probably would never have imagined the state she was in a little earlier. Her ability to bounce back is another way in which we have been fortunate.

This morning at 7:45, she started to get up. I went to the bedroom. She was unusually alert and seemed like she didn’t need my help. I walked her to the bathroom and back to bed. She thanked me and said, “You’re really a nice guy.” She is asleep again. We’re off to a good start. I’m hopeful that she will be fine when I get her up for lunch.

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Not our Best Day: Kate’s Most Intense and Long-lasting Anxiety Attack

Yesterday started out well. I slept until almost 6:00, had breakfast, took a forty-minute jaunt around the house, watered plants, and wrote a new blog post; however, the pleasantness of the morning ended abruptly when I went into wake Kate for lunch. She had her worst anxiety attack. It was more intense and longer in duration than the earlier ones – about an hour.

She was frightened and unable to explain what she was experiencing. On the previous occasions, she has said things like “I don’t know where I am or who I am or anything.” This time the only thing she said was “I don’t know what’s going on.” She was shaking. Not surprisingly, she didn’t know my name or our relationship. I asked her if I seemed familiar to her. She said I did. I held her hand and said, “I hope you think I’m a nice guy.” She said she did. Despite letting me hold her hand, her attitude toward me was one of “approach/avoidance.” At one point, I started to put my arm around her. She resisted. It was as if she weren’t quite sure about me, but I was the only “thing”/person she recognized. There was no one else she could trust.

During the hour she and I were in bed, she repeatedly asked my name but couldn’t remember it. Only a few minutes passed before I put on some music by the Susquehanna Chorale. I selected some of her favorite pieces, “Shenandoah,” “Danny Boy,” “Loch Lomond,” “Deep River,” and “Swing Low Sweet Chariot.” I followed that with a series of John Rutter arrangements that were very soothing. I talked to her as the music played. I tried to speak slowly in a comforting voice. I mentioned many of the things that I know she likes – our courtship, marriage, and family.

Thinking that it might help to trigger a few memories, I encouraged her to get up and let me show her the house and take her to lunch. Each time she would clutch herself and tell me that she was scared and didn’t want to get out of bed. I’m not sure whether the music or my talking calmed her, perhaps both, because she gradually felt more comfortable. After a while, I asked if she would like to go to the bathroom. She did. Within moments of getting up she seemed to be better. The crisis was over.

When we got home from lunch, Kate was tired. She rested for over two hours. During that time, I asked if she would like for us to look at one of her photo books or go to Barnes & Noble. She said she just wanted to rest. About an hour before going to dinner, I picked up her “Big Sister” album that her brother Ken had made for her. I walked over to the sofa and showed her the cover picture. She didn’t show the usual excitement. I pointed to the picture of her and asked if she knew who that was. She gave me a faint smile and pointed to herself. Then I said, “Don’t you like the smiles?” She did.

I was standing in front of her and turned the book so that I could leaf through it. I turned to the first page that has a photo of Kate with her mother and father. I said, “Here’s a picture I like.” I showed it to her and said, “Why don’t you sit up and let me sit down beside you. We can look at some of the pictures together?” She still didn’t express any enthusiasm, but she agreed. By the time we got through a couple of pages, she finally responded the way I had hoped. She was getting into it. Her mood began to shift toward cheerfulness. We spent almost an hour going through the book. She was fine again, and we went to dinner. She remained in a good humor after that although she was tired and went to bed a little earlier than usual.

It was just over a year ago when Kate had her first anxiety/panic attack. Since then she made have had three or four more. Thankfully, they don’t come often. Each time one occurs I am a little surprised because I haven’t been able to see it coming. I think all but one of them occurred after she had been sleeping or resting. The one yesterday was the most intense and long-lasting. I don’t like seeing her suffer in this way and hope she doesn’t have another experience like it. I’m just glad that I am still able to find ways to “bring her back.”

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Confusion, but in a Good Mood

Yesterday morning was a time of significant confusion for Kate. It was similar to several other moments when her memory seemed to be completely blank. She was concerned but showed no signs of the panic she has had in similar situations. I was in the kitchen when I heard her call my name over the video cam. Yes, she did remember my name. This was one of those times the camera paid off. Kate called to me in a somewhat soft tone of voice, nothing like a shout or scream. The microphone is very sensitive. I heard her immediately and went to her.

At first, I didn’t sense the degree of her confusion. As she does so often, she asked me where we were. I told her we were in Knoxville. She looked puzzled. She asked why. I explained that we live here and that “this is our house.” Then I said, “You look like you are a little confused. What could I do to help you?” That opened the door to an hour-long conversation during which she asked questions (often the same ones over and over) and I gave her the answers. We talked about her parents, my parents, and our children and grandchildren. The topics also included how we had met, places we had lived, her work and mine, and other special things we have done.

Several times, I asked if she might like to get up. She declined saying, “I would rather hear you tell me about my family.” The last time I asked, she agreed it was time to get up. She took a shower and got back in bed for another hour. When I got her up for lunch she was fine.

I don’t know how confused or clearheaded she was about our relationship. I only know that she called my name when she wanted me. She was in a pleasant mood throughout the episode and for the balance of the day. This is another good example of the transition she can make extreme confusion to a more normal state. It seems clear to me that when she wakes up most of her connections to the world around her are dormant. As she receives the information I give her and as she directly experiences more of her everyday life, she feels more at ease.

That doesn’t mean she knows where she is or the people around her. Increasingly, she thinks we are staying in some other place than our home. That was true when we got home last night. In the car she asked where we would be staying. I told her we would be in our very own home. She asked if it was very far. When we drove up to the house, I said, “This is where we will be staying.” She admired everything she saw and never realized we were at home, but she was happy.

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Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.

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Communication and Kate’s Health and Wellness

A week ago, a Twitter friend posted something that caught my attention. She emphasized how important it is that caregivers are mindful of the signs of health issues our caregivers experience as their communication skills deteriorate. That was relevant to me right now.

Among the many reasons that Kate and I have gotten along so well since her diagnosis is that neither of us has faced any other serious health problems. That has enabled me to give my full attention to her Alzheimer’s. When either of us has had colds, I have been more aware of how even that can impact our normal routine.

As my friend’s tweet suggests, my awareness of other health concerns is hampered by Kate’s inability to tell me anything about her symptoms. When she has had colds, I have always noticed before she did. Fortunately, neither of us has had many colds. Recently, however, she has encountered at least three new issues that concern me.

The one that has bothered me the most has been her eyesight. When she looks at her photo books, she often sees one person but fails to see the person next to her. It occurs frequently when there are three people. She sees the first person on the left. If I ask her who the next person is, she often skips the second person and goes to the third person. When she gets all the jigsaw pieces in place but one, she seems unable to see the blank spot where the last one goes. She walks to and from our car in a parking lot, much like a person who is blind. I know she isn’t, but she is very unsure of herself.

I have tried to get her to tell me what her vision is like and test her when we are at home, but she isn’t aware of a problem and/or can’t express what her experience is like. Since she has regular eye exams twice a year, I hadn’t been worried about any serious vision problems until recently. I attributed everything to her Alzheimer’s. Some of that seemed obvious to me. For example, I do know that some people find that people with dementia don’t want to walk on a black doormat because it is perceived as a hole in the floor. Kate is sensitive to contrasts in flooring or pavement. When she encounters them, she holds up a moment and wants to hold my hand. Last night as we left Bonefish Grill, she saw black spots on the sidewalk and asked if they were holes. That is probably related to her concern about color contrasts on pavement.

Yesterday I spoke with the nurse assistant to Kate’s ophthalmologist. I called to see if her doctor thought Kate’s vision problems could be something more serious, possibly macular degeneration. The doctor said it was unlikely since she had not seen any signs of that at the time of Kate’s last appointment five months ago. The next appointment is in three weeks. We decided to wait until then to see if there are other problems. The doctor thought Kate’s Alzheimer’s is to blame. I suspect she is right but will be eager to see if there is more that we should be concerned about.

Another problem is her hearing. That, too, is something that may be a result of her Alzheimer’s, but she has always had a problem with wax buildup in her ears. We have periodically had them flushed by a doctor. I have tried at home without much success. The last time they were flushed was about six months ago. We have an upcoming appointment with her doctor next week. They should take care of that for us. Kate has said almost nothing about a problem but did mention it within the past week. This is something else to which I need to be attentive.

The problem we may have the most difficult time addressing is her physical mobility. I think that is one that I may have to adjust to. Once again yesterday, she rested the balance of the afternoon (about three hours) after returning from lunch around 2:00. The good news is that she has gotten up earlier in the morning several times in the past couple of weeks. That enables us to get out of the house a little more. That is the only way she can get any exercise. We have an appointment with her doctor next week and will talk about that. I have already started a letter updating the doctor, so she will be prepared when we meet. I wonder how much of the problem is arthritis. It is interesting that she doesn’t complain of any pain; however, it sounds like she is in pain when she gets out of a chair or bed. When I ask directly whether she feels any pain, she says she doesn’t.

One thing that Kate is very aware of, but cannot explain to me, is a dental problem. She brushes her teeth a lot and also picks at her teeth. She feels like she has something caught between then. When I help her floss, I don’t see anything that should make her feel that way, and the flossing doesn’t solve the issue. She also rinses her mouth out multiple times when she brushes. She rinses, spits out, rinses, spits out, rinses, spits out. As she does this, it appears that there is something stuck in her mouth that she wants to get out but can’t. I have been giving her mouthwash to see if that might help. So far I’ve had no luck.

I wonder if this is related to her salivation issue that has never ceased since it started during the summer of 2016. She still does not swallow her saliva. She goes through a lot of paper napkins and paper towels. Often she wipes her mouth with her hands an wipes them on her clothes. That has had an effect on how often I wash. Both her doctor and dentist have suggested that she is bothered by what is a common problem among seniors. There is a collection of phlegm in the throat. I do recall that with my dad. It was through his speech therapist that I first learned of this issue. In Dad’s case, it did not keep him from swallowing. Kate, however, seems to be bothered by the idea of swallowing it.

For the moment, we don’t have any skin problems. The squamous cell growth on her lip is completely gone. Our next appointment with the doctor is in November. I’m not concerned about anything now, but it is one other thing for me to watch.

My Twitter friend was right. A caregiver definitely has to be observant when caring for someone who can’t communicate or effectively explain any problems. Otherwise, things could get out of hand quickly.

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Kate may be unsure of who I am, but she believes I am important to her.

I don’t have a clear idea how often Kate remembers that I am her husband. I know it is often enough that I have grown accustomed to her not remembering. For most caregivers this is one of the saddest things that happens as one’s spouse reaches the late stages of Alzheimer’s. That is particularly true the first few times it occurs. That has been my personal experience.

By now I have adapted and accept it. I take comfort in the fact that Kate still recognizes me as someone with whom she is familiar and is important to her. Not a day goes by without my having experiences that tell me that is so. Here are several that happened during the past forty-eight hours.

Night before last when I told her it was time to get ready for bed, she wanted to know where the bathroom was. During the past six months or so, I can’t remember a time when she didn’t ask me that. I led her to the bathroom and pointed out the toilet. I was about to leave her when she told me she wanted me to stay. This, too, is something that is becoming common. She is very unsure of what to do each step. She often asks me, “What next?” I stayed. Before washing her hands, she motioned me to come closer and whispered, “Does she know I’m a woman?” I told her I didn’t know who she was talking about but she and I were the only ones in the house. That worked; she didn’t say anything more. Sometimes she seems to recognize quickly that she has believed something that wasn’t so.

This was another time when she couldn’t understand my instructions about washing her hands. I put soap in her hands and washed them myself. This is just another illustration of her dependence. It’s not consistent, but it is increasing more rapidly than in the past.

After she was in bed, she told me that she was glad I was with her. She thought we were in a strange place and said it was a nice room, but she was feeling better knowing I was there. She began to “work” on her hair, pulling stands from her scalp to the ends. She asked me if it was all right for her to start on the right side and then do the left side of her head. I said, “That would be fine.”

I told her I was going to the family room for a few minutes and that I was not leaving her alone. As I started to walk out the door, she said, “What should I call you if I need you?” I told her my name was Richard. She said, “Okay, Mr. Richard.” I said, “You don’t have to call me mister. You can just call be Richard. She said, “What will he say?” I asked who she was talking about. She said, “You know – the other man.” I told her we were the only people in the house, and it was all right if she just called me Richard. She said, “Okay.” As you know this was far from the first time she had forgotten my name and no doubt our relationship, but over the past week this seems to have occurred for longer periods of time.

When I got into bed a little later, she was still awake. We talked for a few minutes. Then I told her I was going to sleep and said, “I love you.” She laughed. From past experience I knew that she didn’t realize that we are married, just friends. I said, “You usually say you love me too.” She said, “I’m not ready for that.” I said, “You would rather that we just be friends.” She said, “For right now anyway.” We talked a little longer. Then I told her I was ready to go to sleep. I paused and said, “Good night, I love you.” She laughed again.

Yesterday was a day for the sitter. I was relieved when she got up about 8:30. I didn’t have to worry about getting her up. She went back to bed after taking a shower. I let her stay there until 9:30 when I got her dressed. Then we went to Panera. I think this was the third or fourth time in about ten days. We arrived home just ahead of Sandy. I hadn’t said a word to Kate about my leaving. When I got my things together, I told her I was off to Rotary and the Y. She said, “How long are you going to be gone?” I told her it wouldn’t be long, that I was going to Rotary and then to the Y.” She said, “We’ll see.” She wasn’t making much of a protest, but I knew she wished I would stay.

When I go home, she was seated in a chair with her iPad, and Sandy was standing beside her. Kate said, “Oh, good.” It turned out that she had gotten into the store again and Sandy was about to help her get back to her puzzles. Sandy had probably helped her with this a number of times while I was gone. It happens frequently, and Sandy knows how to solve the problem.

Kate is almost always glad to see me. What was interesting this time was just how relieved she was. She breathed a very loud sigh of relief. Then she introduced me to Sandy as her cousin and said, “His name is Richard.” I was a bit surprised that she got my name right after slipping on our relationship. When Sandy left, she said, “I’m so glad to see you.”

Last night we had an experience like the one the previous night when she didn’t realize we were married. We were talking after I had gotten in bed. She said, “This is a nice room.” I said, “I think so too.” Then she said, “I’ve seen worse.” I chuckled. It wasn’t long before we said good night, and I said, “I love you.” Then we had a repeat of the previous night, but she did say, “You’re a nice guy. I like you a lot.” I said, “So you’re glad I’m here.” With emphasis, she said, “Definitely.” That will carry me a long way.