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A Day of Contrasts

At 9:25 yesterday, I walked down the hallway to get Kate’s clothes when I heard her say, “Hey.” Before I could respond, she said it again. I hear this a lot now. It can mean different things. Often it means she wants something. Sometimes she is just trying to find out where I am. Yesterday morning, she was just letting me know she was awake and, perhaps, that she needed clothes. When I got to the bedroom, I found that she was still in bed, awake but not ready to get up.

It was a morning when she wasn’t in a particularly good mood. She acted as though I had said something that annoyed her. A little later, I asked her if I had said something that bothered her. She said, “No, but you probably will.”

Nothing that Kate said or did indicated that she was happy to see me. I chose to ignore this and simply help her get ready for the day. From past experience, I have learned that she won’t maintain that mood for long. I don’t know what precipitates these moods. I believe that her feelings may be a result of my control over so much of her life. I know that she doesn’t always like that. I also know that I often have to work to get her up or to get ready to go places. It could be that when she sees me come to her bedside in the morning, she naturally thinks that means trouble.

It turned out that I made the right choice to avoid a discussion with her and to help her getting up. I helped her dress, got her medicine for her, got her cup and iPad to take to Panera, got her jacket, and helped her into the car. The results weren’t immediate but did occur rather quickly. My own analysis of the situation is that focusing on the every-morning tasks provides Kate with an opportunity to experience some of the things I can help with and for which she recognizes she needs help. When that happens, she is more appreciative. In the meantime, she forgets that she was irritated, and life goes back to normal.

Because she was up early and did not shower, we got to Panera in time for her to have a muffin and enjoy time to work on her iPad before going to lunch. By the time we got there (a 4-minute drive from our house), her mood was vastly different. She was back to normal. As we started to walk across the parking lot to the door of the restaurant, she automatically reached for and grasped my hand. At that point, I felt sorry for her. Not too long before that, she had expressed irritation with me. Now she needed me for security.

We faced a more dramatic expression of her dependence on me when I was about to leave for the Y after the sitter arrived yesterday. When we got home from lunch, she said she wanted to relax in the family room. She picked up a 3-ring binder of family information and photos I had made for her several months ago. It has the names of parents and grandparents as well as information about us, our marriage, and our children. She hadn’t taken much interest in it until yesterday. I am sure she didn’t even recognize what it was when she picked it up and sat down on the sofa. Even though I used a very large font, it is hard for her to read. As she looked down one of the pages, she said, “Hey, here’s your name.” I walked over so that she could show me. I stood beside her as she looked at the information on that page, and I read it for her. She was quite interested.

About that time, Mary arrived. After greeting her, Kate asked her to sit on the sofa with her to look along with her. Then I told them I would be leaving for the Y. When I said that, Kate got a very sad look on her face and said, “You’re leaving? Can’t you stay with us?” It was a radical contrast with her enthusiasm for the information she was looking at. I suggested that Mary could read it to her. She said, “But this is something you would enjoy too.” It may be my imagination, but I think she looked even sadder when she said, “Why can’t you stay? I want you to.”

As with so many things that happen, I had to make a snap decision. I knew it wouldn’t be long before we could read the entire book. I stayed, and I am glad I did. Kate and Mary sat side by side on the sofa while I stood behind them looking at the book over their shoulders. I had written the book in a bullet-point style to make it easier for Kate to read. Because I was with them as they went through it, I could elaborate on much of the information. Kate loved it. It was just like the pleasure of a young child as her parent reads a favorite children’s book to her.

When we finished, I could tell it was a moment when I could make an easy exit. When I said I was going to the Y, Kate didn’t make any effort to stop me. She was happy, and I was on my way.

One other thing happened after dinner that I thought was both interesting and informative. We had walked to the car after leaving the restaurant. I have been helping Kate with her seat belt recently because she has had more trouble getting buckled up. When I started to help her last night, she stopped me and said, “I can do that.” That led to a very brief conversation. I said, “I’m sorry. I know that I sometimes try to do too much for you.” She said, “Yes, you do, but I know you’re just trying to help.” I said, “I will try to do better.” Then she said something that surprised me. “No, don’t change. It’s better if you do too much than if you do too little.” What surprised me was that her instruction to me involved a higher level of rational thinking than I believed possible at this point. This was not simply an expression of a feeling of need arising from her intuitive ability. It did involve that, but she had to put that together with another thought, that if I did less, she might need help when I didn’t provide it. This may be a little thing, but I was glad to see that she put these together and expressed it so clearly. As she sometimes says (though not in a long time), “Don’t count me out yet.”

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A Nice Day with Touching Moment at the End

Like most of our days, we had a variety of experiences yesterday. Kate woke up on her own at 10:00 which worked well since I had a 1:00 appointment to have my car serviced and wanted to eat lunch prior to that. As usual, she was slow to be ready for much conversation, but she appeared to recognize me and smiled when I first saw her.

As we drove away from the house, she said something that surprised me. I don’t remember what it was, but Kate thinks I underestimate her abilities and expressed it to me. That led to her saying, “Men are like that. Women could probably do a lot of things better than a man.” I said very playfully (at least I intended it to be playful), “But I’ve been a “womenslibber” for a long time. She laughed and said (very skeptically), “Are you kidding?” I decided not to extend the conversation any longer and let it die. This kind of talk has never been part of our ordinary conversation until very recently. I don’t know what prompted it, but she has brought up the topic on a number of occasions in the past few weeks.

It was one of those days when she was especially concerned about “where we are.” I repeatedly told her during lunch, and she worked hard to remember. She just couldn’t. During lunch, she asked me to tell her about her parents. I mentioned both their names, and she immediately picked up on her mother’s qualities. It intrigues me that she focuses so much more on her mother than her father. She has always loved both of them. When we talk about her father, she always speaks affectionately about him. On the other hand, her mother receives the lion’s share of her comments. I believe that relates to the fact her father died almost twenty-nine years ago, and it has only been thirteen years since her mother passed. In addition, her mother lived with us the last five and a half years of her life.

We had appointments for haircuts in the afternoon, and I discovered a new issue that we are facing. A couple of weeks ago Kate’s brother’s wife, Virginia, mentioned that pulling one’s hair is something that is common among people (women?) with dementia. I think she was responding to some of my posts in which I said that Kate has acquired a habit of running her fingers through her hair. She starts near her skull and pulls a few strands of hair upward. Virginia said that this can lead to infections of the scalp and that I might ask the hairdresser to watch for this. Today was my first time to ask her to be attentive to this. I had forgotten to do so; however, as we were about to leave, she approached me and said that she had seen some places on her scalp that show a bit of irritation. She, too, had seen this kind of thing before. The big question is “what can we do about it?” My first step was simply to tell her that the hairdresser had noticed the irritation and suggested that she not run her hands through her hair as she had been doing. She was very responsive; however, it’s impossible for her to remember. It was not long before she got into bed and began again. I reminded her, and she stopped. I am sure that she will not remember. We may have a problem on our hands.

I had just finished paying the check after dinner when Kate said something about our relationship. It wasn’t long after that when she looked at me and said something about the possibility of our getting married. She could tell by looking at me that I didn’t know exactly what to say and responded before I could answer. She said, “It’s just something we could think about.” I said, “I love you and have good news for you. We are married.” She said, “We are?” I said, “Yes. We’ve been married for 55 years, and they have all been good years.” As I said this, I feared that by telling her the truth might cause a different kind of reaction. She might have taken that as a sign that “something” is seriously wrong with her. (On several occasions, she has been concerned about that and no longer remembers that she has Alzheimer’s.) Instead, she was happy, and her eyes filled with tears. We sat there for a few minutes holding hands across the table. This is the second time she has suggested our getting married. In both situations I have been touched by this tender expression of her feelings and was glad she was happy when she learned that we really are married.

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Happy Birthday, Kate.

As a caregiver, I often hear expressions of concern about how I am getting along as well as compliments about my care for Kate. I appreciate that, but I sometimes feel Kate deserves more attention than I do. As I attempt to describe in this blog, this is a journey we are making together just as we have dealt with other challenges during our marriage.

Today is her 78th birthday, and I am thinking about the way she has approached her diagnosis. She accepted it with courage and a positive outlook. I would have been more public if I had been in her shoes, but I respect her decision to be more private. She has never wanted people to feel sorry for her or to treat her any differently than they had done before receiving her diagnosis. To this day, she has told only one person. That’s Ellen Seacrest, her closest friend whom we visited in Nashville on Saturday. I honored her choice for several years, but we were making changes in our lives that I ultimately felt required an explanation to our family and friends.

Consistent with her desire for privacy, she wanted to maintain her independence. I have tried to respect that but confess that I’ve not always succeeded. Over time, she has grown much more dependent. Even now, she prefers to do things on her own, but Alzheimer’s has forced her to acknowledge that she needs help.

She has always been even-tempered. Alzheimer’s has made that more difficult for her. Overall, however, she has been very easy to care for. That is especially true because she is so generous in her expressions of appreciation. It is much easier to care for someone who is grateful. On those occasions when she has been abrupt with me, she has often apologized. She is genuinely kind-hearted. That’s not just the way she treats me. It’s the way she responds to strangers we meet in our day-to-day experiences. I can’t tell you the number of times she has thanked bus boys and other cleaning staff in the restaurants we visit. She also gives warm greetings to other customers. That warmth also extends to her sitters whose names she still can’t remember.

Kate’s sense of gratitude goes far beyond the things that I may do for her. She often talks about how fortunate she has been in her personal life and we have been in our married life. I agree strongly with both of these things, but I am inspired by her recognition of how well life has gone for her. She never mentions the dramatic impact that Alzheimer’s has made on her life. By now, of course, she no longer remembers that she has Alzheimer’s. She has experienced frustration, but her diagnosis has never lessened her feelings of gratitude. She never feels sorry for herself. She views health issues and death as natural events to be dealt with to the best of her ability. It may surprise some people to know that we have found the past eight years since her diagnosis to be among the most fulfilling of our 55-year marriage.

Kate and I share a number of things in common. That’s one of the reasons we have gotten along so well pre- and post-Alzheimer’s. Among those things we have in common is a sense of gratitude. Above all, I am grateful we met and quickly sensed a connection that would be permanent. So on this birthday I want to go on record by saying how much I admire her, especially for the way in which she has handled “Living with Alzheimer’s.” In my book she’s a champ.

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A Lesson for Alzheimer’s Awareness Month

One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.

This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.

So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.

Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.

Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.

I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.

We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.

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Another Example of Kate’s Intuitive Abilities

I’ve written two posts in the last few days that deal with Kate’s intuitive abilities. This is another one. Last night she had an emotional experience that illustrates how powerful those abilities can be. This was far from the first such experience, but it was especially intense and lasted over a twenty to thirty-minute period of time.

It occurred after we returned home from dinner. About two weeks ago, she and one of her sitters had watched the first half of Les Miserables. It had been a while since the two of us had watched it, so I turned on the second half. As on other occasions, she quickly became engrossed. Periodically, I noticed that she was whimpering a bit as she watched. She was also making audible expressions of her pleasure.

Close to the last third of the performance, I brought her meds to her. Then I started to refill the pill holder in the bathroom. I was just about finished when she called my name. It was obvious that she was moved by what she was watching. When I responded, she asked if I could come to her. I went over to her and got down on one knee beside her chair. I asked what I could do for her. She said she just wanted me to be with her. Then she took my hand. I said, “It’s beautiful. Isn’t it?” She said, “Beautiful and sad.” She talked off and on for the remaining portion of the performance.

She thought it was so sad that we have wars. She explained that she believed there are times when war becomes necessary but it is so horrible that so many people have to suffer. She has always been moved by WWII and specifically the Holocaust. She said she couldn’t understand why so many Jews had been killed during the war. She repeated her thoughts for at least the next twenty minutes.

As I mentioned in one of my earlier posts, I felt this was a time for comfort as opposed to words. I listened and held her hand and supported her feelings. That continued until the end of the musical. We went to bed shortly afterward.

This experience makes me think about many of the movies we have enjoyed over the past several years. I don’t believe she has been able to follow a plot or understand much of what is going on for at least four or five years; however, that hasn’t prevented her from enjoying movies. For a long time, I wondered how that can be. Then I began to understand that the characters and situations must have communicated some emotional message that she liked. That was illustrated most vividly in several of the movies she has enjoyed during the past year. One was Darkest Hour. In that case, she did understand that it dealt with Churchill and WWII. She was able to connect with the seriousness of the events portrayed as well as the drama conveyed by the acting, visuals, and sound. The other two were documentaries, RBG and Won’t You Be My Neighbor? Even without following the story, she was able to get a feeling for both Justice Ginsberg and Mr. Rogers. She easily understood that the films conveyed positive impressions of each one and liked them.

One of the things I have learned since Kate’s diagnosis is that most people think of the last stages when they hear of someone with Alzheimer’s. They don’t imagine that stage is just the tip of the iceberg. We’ll be there sooner than I would like. In the meantime, I will continue to celebrate the fact that there are so many things that she can enjoy. Her intuitive abilities are still working even as her rational ones disappear.

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Addendum for Previous Post

In my previous post I neglected to mention something else that illustrates Kate’s appreciation of things she sees as beautiful. At dinner last night our server brought out a dish with a small cup of Parmesan cheese and another of hot peppers. Underneath them was a paper doily that looked like something my grandmother used to crochet with an outer band of lace. On at least two other occasions, Kate has brought them home. Last night she did so again. She held it in her hand very carefully, trying not to damage it in anyway. Before getting out of the car, she asked me to take it. She said that I was likely to be more careful with it than she. I thought this was interesting in two ways. First, it expressed how much she liked something so simple. Second, she sensed a difference in the way each of us handles our things. She didn’t want it messed up. She trusted my OCD tendencies to protect it.

It also reminds me of how kind she can be in her evaluations. There are many simple things that she appreciates that she might not have before her Alzheimer’s. She is very generous in her own critiques of theatrical and musical performances. She is the same with her attribution of skills of the people she meets. I notice this a lot when I do something simple and very ordinary. She will say something like “You’re so smart.” She does the same thing with many of the people we encounter daily. I think this is a natural outgrowth of her own loss of rational abilities. She still retains an appreciation of such skills and is impressed with the people who still have them.

Seeing beauty in things we take for granted and special skills that we would also overlook gives her more things in life to enjoy than the average person. That’s something else that the longevity of intuitive skills provides to make life enjoyable. How grateful I am for that. That has made living with Alzheimer’s easier for both of us.

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Reflecting on Kate’s Intuitive Abilities

As Kate’s rational abilities (remembering names, places, processes, relationships, etc.) continue to fade away, I find myself focusing even more on her intuitive abilities. These are the ones that involve our five senses, sight, suond, taste, smell, and touch. As Judy Cornish stresses in The Dementia Handbook, it is the rational abilities that decline so rapidly with dementia. People with dementia (PWD) continue to experience the world through their senses and from them derive associated feelings. They also hold on to feelings associated with people, places, and things even after the names are forgotten. I have often mentioned how important music has been to Kate and me, but I don’t believe I have given sufficient attention to her other sensory experiences. In addition to sound, sight has been especially important. I would like to relate a few experiences that occurred yesterday that illustrate what I mean.

It began first thing yesterday morning. Well, not “first thing.” It was actually 10:45 when I walked into the bedroom and noticed that Kate was awake. As I walked over to the bed, she smiled at me and gave me a little wave with her hand. From past experience I know that it is unlikely that she remembered my name. It is quite possible she didn’t remember that I am her husband; however, she did recognize me as someone she knows and likes. She responded very much the way she would have if she did not have Alzheimer’s. That was a “happy moment” for both of us, and it didn’t require any of the typical rational knowledge that we normally associate with a husband/wife relationship of fifty-five years. She felt good that I was there, and I felt good seeing her greet me so warmly.

You may recall two other similar experiences I have mentioned before. One involves a friend of Kate’s we saw at a movie several months ago. Kate has always liked her. We spoke for a few minutes. When we turned away to go into the theater, Kate said, “Who was that? I don’t remember her at all, but I  liked her.” Indeed she did. The other involves a negative feeling and is one that has occurred several times. It’s a mug shot of Frank Sinatra that hangs in a restaurant where we eat our Sunday lunch. She can never remember who he is, but she knows she doesn’t like him. That relates to my telling her about the circumstances of his arrest for adultery and seduction. Of course, she doesn’t remember that, only her feeling about it and him.

One of the best illustrations of the pleasure she derives from sight involves the children we see wherever we go. She loves watching them and often speaks to them. Another is her love for beauty in nature. I see this most often when she comments about the trees on the neighbor’s property behind our house. It also occurs when we are driving along the highway or local streets. She often says, “I love the green.” She is referring to the green trees and shrubbery. This experience also extends to sunsets and houses. As we leave our house, she almost always says, “I like that house.” when we pass the last house on our street. When she goes through the “Big Sister” photo book that her brother Ken made, she repeatedly comments on the smiles on people’s faces, even her own. And I shouldn’t overlook the puzzles she works. She often shows me a puzzle and comments about the beautiful colors or the cute kittens, and she works those same puzzles over and over and over. In the coming year I plan to make more visits to two of our local museums and our zoo. These are also things that she appreciates through her visual ability.

Of course, our senses are working together all the time. When I describe the pleasure Kate receives from music at Casa Bella, it is really mixed with the sight of familiar faces and good feelings about those with whom we sit each time. She can enjoy a great evening without depending on any rational abilities at all.

She has had several experiences over the past two days that illustrate the interaction of sight and sound. The first occurred at lunch on New Years. As we entered Panera, we saw a man we often call Montana because he spent much of his life there. He is there almost everyday. He sits outside rain or shine in winter and summer and always wears a cowboy hat. Over the past few years, Kate has always spoken to him when we arrive. After he returned her greeting on Tuesday, she said, “I like your voice. You should be on the radio.” By itself, this is just an indication that she liked his voice, but it is also something that is a common occurrence. She doesn’t say it to everyone, but she does often tell the person or me that he or she has a nice voice. I might add that Kate no longer remembers him as Montana or his real name, but she remembers him and continues to speak with him each time she sees him.

We had two similar experiences with servers yesterday, one at lunch, the other at dinner. The server at lunch has served us for several years. We often talk with her about her daughter who is a competitive swimmer. Yesterday we caught up on our separate travels to visit family for Christmas. As we left, Kate commented on how nice she is and her “natural” way of relating to her customers. With a different server, our experience could have been quite different. The best part might have only been the meal. As it was, sight and sound made for an enjoyable social experience as well.

The experience last night was similar though different in that our server had only served us once before. We didn’t have a history with her. I try to learn our servers’ names and asked her name. A little later, I asked if she were a student. She said she was, and I asked her major. Before we left, we had found out that she used to work at Casa Bella and knows the family of the owners. After we told her goodbye, Kate said, “I’m impressed with her, and she has a beautiful voice.” Again, her pleasure didn’t rely on her rational abilities at all.

These experiences remind me once again that how much of our pleasure derives from our intuitive abilities. For the past eight years, Kate and I have emphasized these abilities. We have enjoyed life and been happy. It is only within the past six months that I have understood why. I thank Judy Cornish for opening my eyes to the value of our intuitive abilities, especially for people with dementia. That becomes their only world.

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Little Things and the Importance of Intuitive Abilities

Yesterday was another relaxed day and a very nice one. Even though we had no commitments for the day, I got Kate up before she was ready. Our housekeeper was at the house, and I also didn’t want to eat too late in the day. Fortunately, Kate didn’t make a fuss at all about getting up. She responded to me as though she recognized me. She didn’t ask my name or who I am. She gladly accepted my help with dressing although she did most of it by herself.

When we were ready for lunch and about to get in the car, she called to me in a whisper and motioned me to come close to her. It was like she was trying to keep someone from overhearing her although there was no one around. I walked to her, and she whispered in my ear, “What is my name?” I told her. She asked me to repeat it and then said it herself. As I opened the car door, she said, “What’s your name?” When I told her, she said, “I knew that.”

On the way to lunch, I played a CD of familiar show tunes. She sang along with several of them. I was surprised at her memory for the lyrics. She didn’t get them perfectly, but she did a pretty good job. She also surprised me as we left the restaurant. We were about to step off a curb when she said, “Take my hand.” I immediately sang the phrase “Take my hand; I’m a stranger . . .” She finished it by singing “in paradise.” I was surprised again. That’s an old song, and one that we haven’t heard in many years.

Later after we had returned home, she picked up something that belonged to our housekeeper thinking it was ours. I told her it was the housekeeper’s. She said, “My bad.” I don’t ever recall her using that expression before, and it is obviously of a more recent vintage than the old songs she was singing earlier. Once again she had surprised me.

I continue to believe Kate derives a good bit of pleasure from the puzzle pictures themselves as well as the satisfaction of completing them. She often asks me to look at a puzzle after she has finished it and comments about the colors or how cute the animals are. She has two or three that she works over and over. Both of them are pictures of kittens. One is very colorful. Kate like that. She likes the kitten in the other one. This happened several times while we were at Barnes & Noble yesterday afternoon. Her intuitive abilities are alive and well.

After dinner last night, I turned on the last of the Clemson/Notre Dame game and planned to watch the Alabama/Oklahoma game. As so often happens, my plans changed. Normally, Kate works her puzzles until time for her to go to bed. As I have mentioned before, she is encountering a little more frustration with her puzzles now. There have been a number of occasions in the past several weeks that she has simply put down her iPad and sat without doing anything. That is what happened last night. I saw that she had stopped working her puzzles and knew that she needed a break. I suggested that I find a YouTube video with some music. She liked the idea. I found a series of Andrea Bocelli videos that she enjoyed. That was followed by an old “Christmas in Vienna” concert with The Three Tenors. She watched all of it and was thoroughly entertained. That was an hour. It led to several additional videos of Bocelli with other musicians like Lang Lang and Sarah Brightman. Kate was so engaged that she didn’t want to go bed but did so at my urging.

So what about football? The truth is that I didn’t have a stake in either game, so I didn’t consider it a great sacrifice to give them up. In addition, I also enjoyed the music as well as watching Kate being so engaged. I hope that we will be able to enjoy music together for a long time. It’s a pleasure for me to live in the moment with her. It is also another example of how important intuitive abilities are to both of us. They provide moments of joy I did not expect when Kate was diagnosed.

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The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.

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Nothing Special, But a Nice Day

It’s a cool, rainy morning in Knoxville. Both the neighborhood and the house are very quiet except for some soft piano music playing in the background. I had planned for us to visit our friend Ellen in Nashville today. The weather report changed my mind. It is supposed to rain a good bit and might snow as well. Either way, I’d rather not be on the highway.

I trust that Kate and I will have another good day. We usually do. That was true yesterday. Kate was up surprisingly early (before 9:00). She had gotten up to go to the bathroom and went back to bed. I checked on her at 10:00. She wasn’t asleep but very relaxed and didn’t want to get up.

When I went back about about 10:20, she asked me what she should do. I suggested getting up and taking a shower. She said she didn’t want to take a shower. After she had been to the bathroom, she changed her mind. This was another day she wanted my help to the bathroom, toilet, and shower.

One thing was different yesterday. She knew me as her husband. She may have asked my name one or two times, but she knew we are married and mentioned things during the day that made that clear.

We were able to leave for lunch by 11:30. That made it easy to return home for the sitter at 1:00. Before she arrived, I pulled up a series of YouTube videos with Christmas music. The first one I previewed was Handel’s Messiah. I told her that was a special piece of music for us because we attended a performance of Messiah on our first date in 1961. I have mentioned this a number of times during this Christmas season, so I was surprised to see that she responded emotionally. Her eyes immediately filled with tears.

I left Kate and the sitter with the videos running. When I returned four hours later, they were still watching. Kate said, “You should have been here for the beautiful music.” Mary said that Kate had rested part of the time and may have actually fallen asleep for a little while. She couldn’t be sure.

We relaxed at home for another thirty minutes before going out for our Friday night pizza. We came back home where I watched the evening news while Kate worked on her iPad. Following the news, we watched a portion of Messiah broadcast by the BBC. It was a good way to end the day.