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Confusion, Growing Dependence, But Happy Times As Well

Kate’s confusion continues and along with that her dependence on me. Despite her confusion over our marriage, we had a nice lunch. We had two brief social encounters with friends we hadn’t seen in a while. One was a former neighbor, the other a member of our music club. After lunch yesterday, we came back to the house for a little over an hour before we went for our hair appointments. During that time, we relaxed in the family room where Kate worked on her iPad. The music was relaxing. It was a very pleasant moment in the day.

After our haircuts, we were off to Barnes & Noble where we also saw a couple of friends who stopped at our table to chat. From there we went to Bonefish Grill for dinner. Once again, we saw several people we know from our neighborhood and had a good meal.

When we got home, we spent a little time in the family room where I watched the news. Then we retired to the bedroom for more of Fiddler on the Roof. After saying yesterday that Kate only puts down her iPad for Les Miserables, I noticed that she quickly became engaged with Fiddler. We watched for an hour during which time she never opened the iPad. Watching an hour or so of a musical she enjoys is becoming a good way to end the day. She enjoys herself must direct her attention away from confusion and loss of memory.

I am noticing more confusion at bedtime now. It is something that has been happening for a good while. It’s just that now she seems to be especially confused about getting ready for bed. That has obviously happened in the past when she has gone to her room to get a night gown and not come back with one. During the past few days, I have taken the lead and said, “I’ll get your nightgown.” She says, “That would be nice” or “Thank you.” There is no sign of independence. I think by that time of the day she wants what is the easiest thing.

I woke her at 10:40 this morning. I think she was about half awake anyway, and I would like for us to get to lunch before Mary comes at 1:00. She got up easily, but it was obvious that she was confused. She asked me what I wanted her to do. I told her she could take a shower in our bathroom. She asked, “Where is that?” I point to it and told her I would show her. I got towels out for her. She seemed very unsure of herself. I definitely feel better about her showering in our bathroom because of the walk-in shower. She has showered there every day since her fall last week. I feel we were fortunate that she didn’t hurt herself. The next day I asked her if she felt any pain from the fall. She didn’t remember the fall and didn’t have any pain.

Life is quite a mix of things right now. I suspect this is only the beginning. I am just glad that we can still enjoy time together. I would not have believed it 7 ½ years ago.

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So, how am I feeling?

I am sometimes asked how I’m doing? I know the question is asked because people hear so much about the stress experienced by caregivers. As someone who has read a lot about dementia and caregiving, I am quite familiar with the dangers we face. One of the things I’ve learned is that over 60% of caregivers die before those for whom they care. As a result, I am very sensitive of the need to take care of myself as well as Kate. So, how am I doing?

I believe I am getting along quite well. Does that mean I don’t experience any stress? Not at all, but I do a lot of things to ease that stress. I just finished reading Support the Caregiver by David Davis and Joko Gilbert. In their book, the authors identify a variety of ways for caregivers to care for themselves. I was glad to see that I have used all of them. I’ve relied on three in particular. Exercise, reading, and social engagement (one of my choices for “Me Time”). How much time I have devoted to them has varied. For example, Kate’s sleeping late in the morning has put a dent in my social contact. Though our morning trips to Panera began for Kate, I found it has been just as important for me. Thankfully, we are still able to eat out and make it to Barnes & Noble in the afternoon. That is good for both of us. In addition, I get together for coffee with a friend every Friday and maintain an active email communication of two close friends from my college days at TCU.

Having less social contact in the morning and the number of desserts we are now eating has led me to increase my exercise. Previously, I was averaging just under 3 miles each morning. My new average is over 4 miles. Very quickly I dropped about 4 pounds that I had wanted to lose for several months. Of course, I could have given up the desserts, but I don’t want to look back some day and say, “I wish I had enjoyed more desserts with Kate.” It’s not just the dessert; it’s those moments of sharing one together. Since my reading is actually listening while I walk and at the Y, that has also increased my reading time. That’s an extra bonus.

Within the last 4-6 weeks, I have added another way to care for myself. I have begun to meditate. I had read so much about the benefits of meditation, I just had to try it. I’m not ready to say that has made a difference in how I feel overall, but I have found it very relaxing. Right now I meditate in the pool for 20 minutes after getting home from my walk. I was motivated to use the pool because I enjoyed cooling down after walking. It won’t be long, however, before the water will be cooler than I like. When that happens, I may sit on the patio. As the fall weather approaches, I will move to the family room.

One of the things I have learned is that there are many forms of meditation. I was influenced by a book that dealt with mindfulness, being mindful of one’s self as well as one’s surroundings. It would come as no surprise that I incorporate music with meditation. I have several albums of sacred music that are very peaceful. I always begin with my eyes open and take in what each morning looks like at the back of our house. The neighbor behind us has a dense growth of trees. That has sensitized me to the sometimes subtle, sometimes dramatic differences each day. Some days the trees are perfectly still. Not a leaf seems to be moving. This morning the trees were swaying in the wind. Although morning can be an active time for birds and squirrels, sometimes I see hardly a sign of either. During the last part of meditation, I close my eyes and listen more carefully to the music and the sounds of nature.

I find that I become very relaxed. When my timer goes off, it feels a little like waking up from a sleep. It’s a good feeling, and I don’t like to end it abruptly. I don’t hurry to get back inside. When I am back in the kitchen (my office), I continue to play very soft music for an hour or two. That is working especially well now that Kate is getting up later. This is becoming another of my options for “Me Time.” I don’t schedule anything in the morning unless it is necessary. I started doing that for Kate. Now I feel that works for me as well.

All of this is to say that I am mindful of the need to take care of myself and believe I’m doing a pretty good job of it; however, I still haven’t said how I feel. The answer is I feel good most of the time. I especially enjoy my time with Kate. I treasure each moment with her because I feel they are drifting away. I have sad moments. Those are usually the times when she is down, but they also occur when I see new signs of her decline. I am continually adapting to her being able to do less and less. At the same time, I have a sense of satisfaction that we have done the best we can to take advantage of our time together. That’s a good feeling. Just as important, I know that we will continue to enjoy ourselves. I hope that we will be able to do that a good while longer.

Let me conclude this post with something I read in Support the Caregiver the other day. The authors distinguish between being “sad” and experiencing “sadness.” They suggest having sadness is an “appropriate and healthy emotion for the loss of a loved one.” Being sad prevents one “from moving forward into a healthy and productive life.” I am not sad, but I do have moments of sadness. I believe the same is true for Kate.

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Always Adapting

Every caregiver of a loved one with dementia knows it is helpful to adapt to the changes that confront us. I get that, but I don’t adapt at the first signs of change. In fact, I often work hard not to give in to the changes that are required. Giving in has its benefits though. The big one is that you don’t have to fret over the fact that what you want isn’t going to happen.

That’s my introduction to the change I made yesterday. You may have read one or two posts in the past few weeks that conveyed my desire for Kate to get up early on the days we have a sitter, especially on Monday when the sitter arrives at noon. I started our custom of going to Panera each morning so that Kate could get a muffin. As we became acquainted with the staff and some of the regulars, I felt the social encounters we had were good for her. It has been a time that the two of us could share a pleasant social experience that was easy for Kate.

Earlier this summer when she started sleeping later in the morning, we had less time for Panera and sometimes missed it altogether and went straight to lunch. That didn’t present a problem for Kate. She has never expressed any disappointment about missing her muffin, Panera, or the social experiences we had there. That wasn’t true for me, however. I had grown accustomed to spending one or two hours a morning with her in a social setting. I wasn’t even eating. I just had my coffee. The difficult part was giving up the social experience. Originally, I took Kate to Panerea for her, but, ultimately, I found it was as much or more for me.

Yesterday I decided I would not rush her, but I did make an attempt to wake her in time for me to take her to lunch at Panera. She had no interest in getting up, so I decided to let her sleep. I would just ask the sitter to take her to lunch for me. Having made that decision, I relaxed and went about my business. That is the big benefit of letting go. I’m not going to fret over this. From now on, we’ll go to Panera if she is up in time. Otherwise, I’ll let the sitter take her. By the way, as it turned out, Kate did get up in time for me to take her to lunch. It was almost 11:30 by then, so I called the sitter and asked her to meet us at Panera.

That only takes care of three days a week when the sitter comes. There are still four other days. There have been at least two or three days lately when we didn’t get to lunch until close to 2:00. Since I am usually up between 5:30 and 6:00, I eat an early breakfast. I’m ready for lunch between 11:30 and noon. It would be no problem to wait until 1:00, but 2:00 is stretching it. The most obvious solution to this problem is to keep something in the house to either substitute for my lunch with Kate or tide me over until then. I think I’ll just take this one day at a time. In the meantime, I’ve been snacking on a little granola. That seems to work for a limited time.

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A Change in My Morning Routine

I’ve been pretty open about my following a predictable daily routine. That’s especially true in the morning when I have the most control. After that, I seek routine but always bend to the necessities of the day. I find that I bend a lot more with the progression of Kate’s Alzheimer’s. Her recent changes and the summer weather have made a difference.

As long as I can remember my first order of business has been to eat breakfast. During the past four or five years, I’ve added a daily walk of 2 to 2.5 miles right after breakfast. Over the past few weeks, that’s changed.

I was initially motivated by the weather. The morning temperatures and humidity have been a little warmer than I like, so I decided to walk a little earlier. I tried that, but it was still too warm by the time I reached the mid-point of my walk. That led to what I previously would have thought to be the unthinkable – walking before breakfast. It took me a week to get fully adjusted, but it is working now. That first week I was so accustomed to beginning my other daily activities when I got back from my walk that I forgot to eat breakfast three times. It was only a little later in the morning that I felt unusually hungry. I quickly realized the problem.

One morning I was hotter than usual when I got home from my walk. I decided to cool off in the pool. I was only in the pool about twenty minutes, but I found it a nice way to end a walk, so that has become my new normal. I’m not sure how long I will continue that. I suppose that will be when the water is colder than I like. That shouldn’t be too long. In the meantime, I am enjoying the new routine. I think it may have some therapeutic benefits as well. I’ll say more about that in another post.

With Kate sleeping later than usual, the added stress as she declines, and the increase in the number of desserts we are now eating, I’ve increased the length of my walks. Instead of 2 to 2.5 miles I have gradually increased that to a little over 4 miles. Yesterday it was 4.5 miles. Today it was 4.6 miles. I’m stopping there.

Apart from its stress-reduction value, it also gives me more time for reading (listening). That is especially helpful with longer books. Now I am listening to A Gentleman in Moscow. It would take me 16 days walking my shorter route. My new one will allow me to do it in 12. I should also add that I have dropped almost five pounds. For the past couple of months, I have been five pounds heavier than I like to be. Burning more calories really helps.

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Back to Normal

After the pain of Friday night, we were back to our new normal routine yesterday. I say new normal since Kate is sleeping later somewhat more consistently now. It appears that the new pattern is to sleep late a couple of days in a row. Then she gets up at a normal time the next day. If that pattern holds, she will probably sleep late again this morning. I woke her around noon yesterday. We went directly to lunch, arriving about 1:30.

We came back home where we relaxed over an hour. I got out a three-ring binder with photos of our children and grandchildren as well as Kate’s brother and his wife. I had also included several pages of information about us. It included basic family information like Kate’s parents and grandparents, her brother and his wife, and our children and grandchildren. There is also a section to which I will continue to add information. Right now it includes our dating, engagement, wedding, and honeymoon. First, I’m going to revise what I have. I’m going to format the information as an outline rather than a narrative. That will be easier for her to comprehend. I also don’t want to overload her. I think having little snippets of information is better than trying to tell a more complete story. Kate was interested in what I had put together. That made me happy. I wasn’t sure what to expect.

When we finished with Kate’s Memory Book, I picked up her Big Sister Album that Ken made and gave to her in the spring. It’s 140 pages with multiple photos on each page. She went through the entire album. For Kate, it was just like seeing it for the first time. I am struck by the fact that there are a few pictures that she always singles out as especially good. She loves the picture of Ken and her on the cover. It was taken when they were 6 and 3. I think the album is especially important for her right now when she is beginning to lose so many of her memories.

When we finished, we had about an hour and a half before dinner. We went to Barnes & Noble. From there we went to dinner and back home. We relaxed a while in the family room before adjourning to our bedroom where we watched a portion of Sound of Music. She was feeling tired and got to bed at 9:30. I got in bed shortly thereafter.

Neither one of us said anything about the previous night. We were back to where we were. This is a good example of the pattern of changes that occur over time. There is never an abrupt end of one thing and a beginning of another. That is the way it has been with names. She sometimes forgets names but remembers them at other times. As time passes, the forgetting becomes more common. Most of the time, she no longer remembers the names of our children, but sometimes she does. She is forgetting my name more than in the past, I see that it won’t be long until my name and hers will be lost.

This gradual process helps me adapt. I am bothered by the first signs of new things that mark the progression of her disease. Then I begin to adapt. Then something else happens. I try not spend a lot of time worrying about it, but I do wonder what our lives will be like 3-6 months from now. I hope that we will be able to make a trip to Texas for Thanksgiving with Kevin and his family as well as to Virginia to be with Jesse and her family for Christmas. It is still too early for me to know if this will work out.

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An Example That What Works for One Person May Not for Another

On Monday I had gone to Rotary and to the Y while the sitter stayed with Kate. I had a little time after that and dropped by Whole Foods to connect with their Wi-Fi. While I was there, I saw a friend of Kate’s. I learned that she had recently moved in with her parents to help her mother take care of her father who has Alzheimer’s. It sounded like her father was getting along about as well as Kate. I mentioned our having binged on musical and theatrical performances as well as keeping active by spending time at Panera, Barnes & Noble, and eating out for our meals.

Kate’s friend is a former art teacher in the public schools. That led me to tell her about Judy Cornish’s thoughts about rational and intuitive abilities. I thought that with her artistic background she might be interested in Cornish’s distinction and its implications for caring for someone with dementia. She was interested and then told me her father was a retired band director. Music had been an important part of his life since childhood.

We swapped stories for a while. Then I mentioned our going to Casa Bella three times a month for their music nights. She felt her parents would enjoy the music, but she had concerns about their getting out so much. My impression was that they were not as comfortable getting out in crowds. They prefer to remain at home a good bit of the time. I realized quickly that what has worked for us was not going to be applicable to them.

I may have been sensitized to their situation because of a couple of tweets I saw in the past few days. One had said something about the importance of recognizing that we are not all alike. The other mentioned how uncomfortable some people could be when thrust into many public situations. They eat out infrequently and prefer to enjoy the comforts of home.

As we talked further, it appeared that the friend’s parents were getting along fine without getting out the same way that Kate and I have done. She said her father plays music all the time as he has always done.

I noticed one other similarity and difference from what I have chosen to do. Her mother and I share a common feeling that we don’t like leaving our spouses to the care of someone else. The difference is that I have engaged sitters to be with Kate three afternoons a week. This is a case where my head (rational ability) overrules my heart (intuitive ability). After our experience with our parents and the reading I have done on caregiving, I believe it is best for Kate if I give myself breaks. My plan for the future is to increase that care as her needs change.

Ultimately, I hope that will enable me to keep Kate at home. Time will tell if that is possible. I don’t feel I should commit myself at this time. Since Kate’s diagnosis, I have tried to be sensitive to the changes that are taking place and adjust our activities accordingly. I gave up international travel in 2015. We are now approaching the end of air travel domestically and sticking with day trips or overnight trips to destinations that are not too far from home. I am approaching the rest of our journey with an open mind with respect to what is best for the future. Right now, I believe it is best for me to keep her with me. That could change if I had any significant health issue. I am going to be optimistic.

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Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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Reading to Minimize Stress

A few months ago, I wrote a post about my personal efforts to minimize the stress that often accompanies caregiving. That particular one focused on exercise. I noted that I have been involved with exercise for many years, most of that in connection with my thrice-weekly visits to the Y. After Kate’s diagnosis, I added walking around our neighborhood the other four days of the week. More recently, I have increased my walking to seven days a week. Even more recently, I have increased the length of my walk from an around 2 ½ miles to 3 miles. Another way in which I have dealt with stress is reading.

My life with reading could be described as having lots of ups and downs. In elementary school I was an avid reader of The Hardy Boys series and the orange-bound biographies of Americans of note. Most of my reading after that was devoted to the assigned reading in connection with my class work. After graduate school, I found myself immersed in the books and articles that related directly to my early career as a professor of sociology and social psychology. Later on, when I started my own market and opinion research company, I was involved in a good bit of travel. I tended to read while in airports or on the plane. Much of that reading involved newspapers and periodicals.

When I retired to spend more time with Kate, I decided to incorporate reading for pleasure as an essential part of my life. I don’t mean that I didn’t enjoy the things I had been reading before, but most of my reading was related to my professional interests. I’ve always had diverse interests in my personal reading choices. Now I had the chance to pursue a richer variety of topics than I had done before.

Kate had experienced sleeping problems prior to her diagnosis. She was a former English teacher and librarian and had been a reader since childhood. It was only natural that she would think of reading when she woke up at night. She decided the easy way to do that was to listen to audio books. I gave her an iPod, and she signed up for a subscription with Audible for two books a month. Gradually, she started listening when she went to bed each night. She kept that up for years until her Alzheimer’s made it too difficult, and the Trazadone she was taking provided her with a good night’s sleep.

I took my cue from her. I took out the same subscription with Audible and continue to the present. I realize that the audio format is not for everyone, but it works for me. I was also influenced by a problem with my eyes. I have a severe dry eye condition and find reading, especially in print form, to be difficult. For a while I used a Kindle. That worked pretty well. Then I switched to the iPad, but I prefer audiobooks. I discovered that I like having someone read to me. Listening can be very powerful. That is especially true for books that involve a narrator’s telling the story. For that reason, I find books like The Reader to be an especially good in audio format.

Since I didn’t have a sleep problem, I was able to choose what I thought was the best time for reading (listening). That was when I am at the Y or walking. In addition, I continue to read on my iPad. The books I read on the iPad are those that I may want to refer to later. I listen to books about 8-10 hours a week and read on the iPad somewhat less than that. That means I don’t read a lot, but it does add up over time. Since Kate’s diagnosis 7 ½ hears ago, I’ve listened to more than 150 books. In addition, I have read 60-70 on my iPad, over thirty of those by caregivers or people with dementia. I like having those on the iPad. It is much easier to go back to specific parts of a book that way than with the audio version.

As for what I read, my books represent a wide assortment of topics, but they are heavily oriented toward non-fiction. Periodically, I try to correct this imbalance. I have read more than a dozen of Donna Leon’s books. She is my favorite light fiction writer. I have also read quite a few of Daniel Silva’s and Louise Penny’s books.  Two works of fiction that I have particularly enjoyed are Hans Fallada’s Every Man Dies Alone and Ann Patchett’s Bel Canto.

Among the works on non-fiction I have read and enjoyed during the past year or two are The Inheritance, Fifty Inventions That Shaped the Modern Economy, The Death and Life of the Great Lakes, Alone, two biographies by Walter Isaacson (Leonardo da Vinci and Steve Jobs), Why Buddhism is True, The Great Quake, Tell Me Everything You Don’t Remember, Sisters in Law, The Immortal Life of Henrietta Lacks, and Erik Larsen’s In the Garden of Beasts

I have found that reading helps to keep my mind on a variety of things that are well beyond my daily routine. Books are a great source of entertainment, education, and stimulation. In addition, I never run out of new material. It wouldn’t work as my sole method for addressing stress, but it plays an important part in my overall strategy.

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Frustrations of Caregiving

Since Kate’s diagnosis, I have read a good number of books written by caregivers. I have also checked a variety of message boards like those on the Alzheimer’s Association’s website and groups on Facebook. I’ve read enough to appreciate the broad range of frustrations experienced by caregivers. Most of these are directly related to the behavior of their loved ones, but some of them involve family and friends who offer their own views concerning what their loved ones need. The volume of complaints and expressions of despair have led me to spend less time on message boards. I don’t mean that I am unsympathetic to their frustrations, but I quickly found that spending much time with them conflicted with my own experiences.

My experiences with Kate have been much more positive than those of other caregivers. At least one experience we have in common is one that has not been a problem for me. Like other people with dementia, Kate repeatedly asks the same questions. “Where are we?” “What is his name?” “How many years have we been married?” I know that this is very annoying to many caregivers. This doesn’t bother me at all, and I don’t know that I have a good explanation for why we respond so differently. I can only say that I just recognize that it is impossible for her to remember. It seems hard to imagine my being annoyed with her for something that is so far beyond her control.

This doesn’t mean that I am not frustrated by other things that she does. I started to use the word “annoyed” rather than frustrated, but that suggests an irritation with Kate herself. That’s not it. It’s a frustration that I haven’t been able to accomplish what I had intended. Most of the time, I even see humor in these frustrating experiences. Let me explain.

If you are a regular reader of this blog, you know that I readily acknowledge having OCD tendencies. I like order and regularity. People with loved ones with dementia will immediately recognize the potential problem. That means Kate and I are like polar opposites. Each day brings a host of things that don’t match my plans or desires. Let’s look at a few examples.

A year and a half ago, I had our master bathroom remodeled. The motivation was to make it more handicapped accessible. Since the remodeling, Kate has showered mostly in the bathroom of our guest room. She does often brush her teeth in our bathroom. I don’t know how it happens, but she frequently spatters toothpaste on the mirror above her sink. She also leaves water on the counter around the sink. When she uses a wash cloth and towel, she rarely hangs them up. They are just thrown on the counter.

On those occasions when she showers in our bathroom, she leaves her night gown that is thrown on top of a cabinet for our towels. She normally uses at least two bath towels, sometimes three. In addition, the bathmat is wet as though it might have been used to wipe up the floor. When she leaves the bathroom, they are almost always thrown on the floor. When I see them, I clean things up. I do notice these things and prefer they didn’t happen, but I think of them as trivial. I am not seriously bothered. In a way, it really is comical. Think of The Odd Couple.

There are two other things that have caused more angst. One is my car. I try to keep all my belongs looking as new as I can for as long as I can. My car is a little over 6 years old, but I would still like it to look like new. It doesn’t. I have accepted the fact that with Kate, it puts too much emphasis on something I consider far less important than the quality of her life. That doesn’t mean that I don’t notice things. I keep a hair brush in the car for Kate. The other day she started pulling out the accumulated hair in the brush. She simply pulled it out and dropped it on floor board at her feet. I am sure she felt better having a brush that was free of hair but never gave a thought to the fact that it was now on the floorboard of my car.

My number one frustration occurs with her clothes. I have many specific examples, but I will pick the one that bothers me most. Friday morning in Asheville, I got out a brand new pair of stone colored pants and a nice casual top that she had worn only a couple of times. They were topped off with her nicest casual shoes. This is what she was wearing when we arrived home and she decided to work outside. About fifteen minutes later, I looked out. She was sitting on the ground pulling weeds. Two or three years ago, I would have suggested that she change into her yard clothes if she wanted to work outside. Over the years, I decided to accept her natural inclination. She has worked in her regular clothes ever since, and I have become more appreciative of Oxyclean. I recognized that I was fighting a losing battle. She couldn’t adapt to my way of doing things. I needed to adapt to hers. Today, I believe we are both winners. More than anything else, I want her to enjoy herself and be happy. She can’t do that if I try to force her to live like me. I am convinced that I made the right choice to adapt rather than fight.

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Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.