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.

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.


As Kate declines, our conversations are changing as well. Sometimes they are more challenging. Occasionally they are puzzling. Other times they can be humorous.

  • Challenging

We ate lunch at Andriana’s yesterday. That’s the restaurant with the mugshot of Frank Sinatra. We hadn’t been seated long before she asked who he was. I told her, and she said, “It’s not a very good picture.” I said, “Mugshots usually aren’t.” Then she wanted an explanation. I told her that police take photos of the people they arrest, and they aren’t concerned with getting a flattering picture. When I told her he was arrested, she wanted to know what he had done. I told her, and she said, “Who was the woman?” I said I didn’t know, and I told her that in this day and time, he probably wouldn’t have been arrested at all. She said, “Who?” I said, “Sinatra.”

This is a small thing, but it is an example of the kind of complication we can have in conversation. It requires a lot of repetition on my part. In this particular case, her memory wouldn’t let her hold on to Sinatra’s name long enough to last the duration of the very short conversation. As I have reported before, she asks me his name multiple times while we are there, but who we are talking about obviously gets forgotten in a conversation about him as well. This is the kind of thing that most other people would not notice because of the nature of their conversations with her. The fact that it is just the two of us offers her the opportunity to ask more questions, and I am very happy about her interest in knowing about the things she sees around her. It does, however, affect the flow of conversations. It can be one explanation after another.

That leads to another challenge in conversation. It is very difficult for her to understand almost any explanation because it often requires more information than she is able to process. I try to keep things simple, but it’s a challenge to do that and to do it all the time. Two nights ago we had our regular pizza night. We sat at a booth where we have eaten quite a few times. There is a poster on the wall above the table that advertises a flavored seltzer. She responds to this the way she does to Sinatra’s mugshot. She tries to read it but can’t understand and asks, “What is that?” I tell her, but she doesn’t know what seltzer is. That gets us into “Too Much Information.” After my first effort several months ago, I now just say, “It’s a flavored beer.” She gives me a look that expresses just how unappealing that is to her.

Between patiently repeating information and attempting to make things simple, it can be work. On the other hand, there is an element of pleasure seeing her interest and also succeeding in satisfying that interest, at least trying to. I do pretty well on the patience end, but I find it more difficult to explain things to her.

  • Humorous

At lunch on Saturday, she looked me over. Then she said, “Your glasses don’t do anything for you.” I jokingly said, “Some people think they make me look more handsome.” She burst out laughing. I said, “You don’t agree?” She said, “You’re a nice guy, but you’re not handsome.” This has been a continuing theme for quite a while. I don’t expect it to lessen now.

  • Puzzling

Yesterday afternoon I was seated across from her while she rested on the sofa in our family room. She opened her eyes and stared at a bench located between us. She looked as though she might be dreaming. I watched a moment and then asked what she was looking at. She tried to explain but couldn’t do it well enough for me to understand. She mentioned something about a “Lin.” I didn’t know what that was, and she couldn’t think of how to tell me. I asked her a series of yes/no questions like “Is it a type of clothing?” She was finally able to say that it was something you put in something else. She looked toward the patio, and I asked if it might be a flower pot.  It wasn’t, but she said, “It’s something you put in the ground.” Then I asked if she was talking about plants. That was it. From there I determined that she wants to buy some flowering plants and put them “someplace.” She continued talking. What she wants is to put them in the front yard.

This kind of conversation does not happen a lot, but it is becoming more frequent. It appears to me like she has had a dream that she thinks of real and talks with me as though I know what she is talking about. As her aphasia gets worse, she has more trouble explaining what she wants. As in this illustration, the words sometimes won’t come to her. Most of the time, I don’t understand her. We both reach a point at which we say it is time to forget it.

The good news is that we are still having conversations though I must say that she is not talking as much now as she did a few months ago. I miss that.


Although the day ended well, Kate was confused again yesterday. It started in when I got her up. It wasn’t the kind of confusion in which she indicated not knowing where she was or who she was, but that was probably true. There were moments when I don’t believe she recognized me, but she didn’t say so. She vacillated between being trusting and being suspicious of me.

When I approached her bedside to wake her, she responded with a smile. In this respect it was similar to the other day when I rushed her, and her mood changed. We had plenty of time and no obligations. I was determined to avoid rushing her. When I reached out my hand to help her up, she pulled away and didn’t want me to touch her. I followed her instructions. She asked where the bathroom was. I told her I would show her. (She often likes to take my hand right after getting up. She walks a few steps and then drops my hand. Sometimes she holds it all the way to the bathroom.) I reached out my hand. She didn’t take it. Then she took one step and grabbed my hand.

Once we were in the bathroom, she needed me to tell her exactly what to do. This was not the first time, but she looked more confused than usual. I pointed out the toilet. She gave me a look that I interpreted as “Is this it?” I said, “Yes.” I helped her wash her hands and put toothpaste on her toothbrush. She takes a long time. I left her to go back to the kitchen where I could see when she was through via the video cam.

She was in the bathroom a while before coming out. When I saw her, I went back to help her dress. This was a morning when she didn’t want my help. I did help her get started and then went back to the kitchen. I won’t go through the whole saga, but it was almost an hour before she was dressed and that was only because I went back to check on her periodically during that time. The downside of that was that she felt rushed. Several times she snapped at me to leave her alone. She apologized each time. She was genuinely sorry.

She enjoyed the music during the ride to lunch, but her mood changed as we waited for our food. Carla’s serves brunch on the weekends, and it is a popular place. It was very noisy, and it took a little longer to get served. That caused her to be a little grumpy. Once the food arrived, she was all right.

She seemed a little listless when we got home. I decided to try something new. I hooked up my laptop to the TV in our bedroom to show her some old slides taken when our children were born. I thought that might brighten her day. I showed her several slides. She didn’t respond as I had hoped. She said she was tired and wanted to rest. We went back to the family room where she rested on the sofa for about an hour. She rested a little over an hour before we went to Barnes & Noble for a while before dinner.

After dinner, I suggested we look at one of her photo books. She wasn’t enthusiastic but agreed. We started to look at one, and she said she was tired. I decided it might be good for us to go back to the bedroom and watch some music videos on YouTube . She took her iPad and worked puzzles while watching the videos. The day ended well.

I think she was confused a good bit during the entire day. There were periods when she seemed to be fine, but she seemed more dependent on me than usual. It appeared that she was worn out. That wouldn’t surprise me. She works hard to understand what is going on around her, but it is increasingly difficult for her.

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 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 “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, “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’

  • 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.

The Interaction of Kate’s and My Moods

Yesterday afternoon I read the following tweet posted by Chuck Fiello Jr. (@OrangeChuck).

When mom isn’t feeling well, she can’t tell me she’s sick anymore so I have to watch for clues. Is she eating less but more tired? Is walking more difficult? When mom eats, she won’t say she’s hungry or full…she just stops eating/slows down or starts to fall asleep.

I replied that I felt the same way about Kate. If you regularly read this blog, you will recall that I have said many times that “When Kate is happy, I am happy.” That doesn’t mean influence of mood moves in only one direction. I make a difference in her mood as well. Recently, I have cited occasions in which I have been able to make her happy with music, family photo books, or simply talking with her gently about her family, our marriage, and/or our children and grandchildren.

It is very clear that there is an interaction of our moods. Once again, the writings of Judy Cornish (@theDAWNmethod) have drawn my attention to something I hadn’t fully appreciated before – the power of caregivers to influence the moods of those for whom we care. More specifically, she has talked about the sensitivity of people with dementia to pick up on the moods of their caregivers. Thus, when a caregiver is feeling tense, frustrated or depressed, that mood can cause their loved ones to feel similarly.

Until day before yesterday, I had never written about ways in which my negative mood and actions led to that same reaction from Kate. Before that, I always reported on ways in which I was able to turn her around if she was confused, frustrated or depressed. That is mostly because I think of myself as being rather even-tempered and upbeat. That wasn’t the case two days ago. I was tense and frustrated as I tried to get her up, dressed, and to lunch before I left her with a sitter so that I could get to the Red Cross on time for a platelet donation.

There was an obvious interaction of our moods. I don’t know exactly why, but she was unusually slow in getting ready even with my help. Looking back, I think she may have been more confused than usual though she didn’t express it verbally. That’s how I normally would recognize it. (Her difficulty understanding how to wash her hands should have been a clue.) I was frustrated and became tense because I was on a time schedule and wanted to follow it, something she can’t do. I tried not to show it, but she can read my emotions quite well. I found that we weren’t working together in the positive way we usually do. Both of us were frustrated. That continued through lunch. As usual, I finished my meal long before Kate. The difference was the tension I experienced in my effort to get home and then to the Red Cross. Nothing I said (the words, that is) should have conveyed the way I was feeling; nevertheless, I suspect she sensed my mood because she was not her happy self.

It wasn’t until the sitter came that she seemed to be more normal. This was a time she didn’t balk when I said I was leaving. She was probably happy to spend some time with the sitter. When I got home, she and Mary were having a good time looking at one of her family photo books. I was happy to see that, and the rest of the day went well.

Yesterday was a more typical day. We had no obligations before 3:00 that afternoon when we had hair appointments. She awoke unusually early, about 7:50. She was a bit groggy, but not in a bad mood. I told her I was glad to see her. She said she was happy to see me as well. We were off to a good start. Of course, we started that way the day before, but it didn’t last.

I thought she just wanted to go to the bathroom but soon discovered that she was ready for the day. She took a shower, and I got her clothes ready for her. When she was finished, she wanted to lie down again. That is not unusual, and since we were under no time pressure, I told her that would be fine. I said, “I’ll be in the kitchen. Just call me if you need me.” About forty-five minutes later, I heard her say, “Hey.” I went back to her and found that she was ready to get up and wanted her clothes. For the past couple of months, I have been laying them out at the foot of the bed on the side that is close to the bathroom. I do that so that she might notice them after her shower. I don’t think she has ever seen them. She asked where they were and I said, “I’ve got them right here.” And pulled them closer to her.

I remained with her the whole time she dressed. She wanted to do everything by herself but needed my help with every item of clothing. In contrast to the previous day, I wasn’t tense or frustrated at all. We had plenty of time and no time constraints. She was even glad for me to help with her hair. That is becoming increasingly frequent. I think she likes it. I know she likes it when I blow dry her hair.

After her morning meds, we were off to Panera arriving before 10:00. We were both relaxed when we got there. She took a few minutes to enjoy the flowers in a couple of large containers beside the door. I didn’t push her to move on any sooner than she wanted, as I did the previous day. We were there an hour while she worked jigsaw puzzles on her iPad, and I checked email on my laptop. Then we stopped by the house for about thirty minutes before going to lunch. We had established a leisurely style and a corresponding relaxed mood that lasted the rest of the day.

Very early after Kate’s diagnosis, I learned that she is very uncomfortable when I rush her. On several occasions, she had panic attacks when we were running late to an event that had a specific start time. That is when I first started experimenting with soothing music to calm her. Music has served us well since that time, but it is only more recently that I have focused on my own mood. I am generally even-tempered so I have thought of my mood as being helpful. I am, however, very sensitive about punctuality. I know she is able to sense the tension I feel when we run late. She has said as much on many occasions when I felt she was misreading how I felt. I thought I was disguising it. Now I am being more thoughtful about my own mood and its impact on Kate. My experience of the past two days shows what a difference mood can make. I know there will always be situations that produce tension for one or both of us, but I will be more mindful of its impact and do my best to control it more effectively.


When I got up this morning, I was wondering how I would start this post. Then I checked in on Twitter and saw the following tweet from @theDAWNmethod (Judy Cornish).

One of the most frustrating things about having #dementia is waking up one day and finding yourself unable to perform a task or use a skill that has been effortless since you were a child.

It closed with a graphic that said, “Be Kind – Everyone You Meet is fighting a battle you know nothing about.”

Nothing could have been more appropriate for me to hear. It was a day for the sitter. That meant I was going to be concerned about getting Kate up and dressed in time for us to have lunch together before my appointment to donate platelets at the Red Cross. I started the process with a little soft music for about ten minutes. I had washed clothes and made a couple of trips to the bedroom to put them up. I noticed that Kate’s eyes were open, and she was in a good humor. I was encouraged.

When I had finished, I went to her bedside and told her I would love to take her to lunch. She said she would like that. Everything was going so well. I got her to the bathroom. After using the toilet, I told her to wash her hands and brush her teeth before getting dressed. She walked to the sink. She started to wash her hands without soap, something that is becoming a habit. I put some soap in her hand and told her to wet her hands and wash them. She didn’t know what to do. I tried to show her by motioning with my own hands. She still couldn’t understand. Finally, I washed them for her. It was only later that I began to think about the frustration that she must have felt. My instruction to “wet her hands and wash them” was itself confusing. It involved two separate steps. I know that is too much for her. In my haste, I forgot.

In the process, I showed my own frustration as I tried to get her to understand. I don’t recall what she said, but she snapped at me. Just as quickly she apologized; however, our frustrations weren’t over. She was much slower getting going. That meant getting dressed took longer than I had anticipated which added to my frustration. She wasn’t eager for my help, and I left her for a few minutes while I went to get a few things done before leaving. I noticed on the video cam that she had gotten back in bed. I rushed back to the bedroom and reminded her that we getting ready to leave for lunch. Although I tried to hide it, she sensed my frustration. That upset her. We rushed more than either one of us wanted and were later getting to lunch than I had intended. I called the sitter and told her we were running late. She was waiting for us when we got home. Then I rushed to brush my teeth and leave for my appointment. The good thing is that Kate seemed glad to see Mary. When I got home, they were seated on the sofa in the family room looking at one of her family photo books.

Lesson learned: She needs more time to get ready now. I have to get her up a little earlier.

Something else happened at dinner last night that also relates to the tweet I quoted above. She had tortelloni. The server brought her a cup of Parmesan cheese. Kate loves lots of it. The first thing she usually does is pick up the cup and pour its contents over her pasta. Last night she didn’t. I said, “Wouldn’t you like some cheese on your tortelloni?” She gave me a blank stare. I picked up the cup and said, Just pour this on your pasta.” She couldn’t understand. I did it for her.

She is increasingly forgetting the names of common things. I sometimes experience a moment of frustration when she doesn’t remember something she ordinarily would know. I have a momentary sense of disbelief that she can’t remember. I want to say, “You know, you just . . .” Then I have to tell myself, “Of course, she doesn’t know. She has Alzheimer’s.” Can you imagine what it must be like for her living in a world in which there are so many strange things and ways to use them? Living with Alzheimer’s presents continual moments of frustration for both the person with the disease and the caregiver. I am constantly learning and need to be a better student.

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.

Sleep, Rest, and Our Day

Each night I take Kate’s iPad to the kitchen where I charge it when I get up the next morning. The past two days I have noticed another sign of Kate’s changes. Her battery was already at 80% of its capacity. Over the past week or so I think it was in the 60-70% range. Normally, it would be at 30-40% or lower. That is a striking change and provides a measure of how much less she has used her iPad.

Her sleeping and rest have also been a little different. Yesterday was the second day in a row that she was up early. Both days we got to Panera around 10:00. That gave us time to relax there for an hour or more before lunch. I like being able to do that. It makes a nice daily routine and an easy lowkey way for Kate to begin her day.

Getting up earlier does have a downside. It means she hasn’t gotten as much rest or sleep as she usually does. The result is she spent most of the past two afternoons resting on the sofa in the family room. That’s what she was doing yesterday when I came home at 4:00 to relieve the sitter. In the past, Kate would have been ready to go out when I arrived. This time she wanted to continue resting. A half hour passed, and I asked if she would like for the two of us to look at one of her photo books. She didn’t. At first, I was concerned that she might be a little depressed. I talked with her a few minutes to get a sense of that. She wasn’t depressed. She was simply enjoying relaxing. I let her remain there until 5:30 when I suggested we go to dinner.

When we got home, I gave her a photo book to look at while I watched the news. She never opened it. She said she wanted to rest. I hesitated at first because it was 7:00. I thought she might have trouble going to sleep if she rested a little more, but I decided that it might be good for her to get a better night’s sleep. I suggested we go to the bedroom where she could rest in bed.

At 8:00, I got her night clothes for her and helped her prepare for the night. It was another two hours before I came to bed. I don’t know if she had been asleep at all. I do know she was awake when I got in bed. She was also in a good mood. She seemed very content. I am glad that she is happy, but I also see all her changes as a part of her overall decline and know there is a lot more to come.

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.