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Feeling Insecure

It has been a year and four months since I first got a sitter to be with Kate for four hours three days a week. I put off making the decision to do this a long time. I was concerned about how Kate would respond. It seemed to me that she felt pretty secure that she could take care of herself and, thus, didn’t need someone to stay with her. When I told her minutes before the sitter’s first visit, she asked me why the person was coming. I told her I would feel more comfortable not leaving her alone. She said, “Oh, okay.” That was it. With only a few exceptions, she has not seemed to mind having a sitter since then. Yesterday was one of those.

I had tried gently to wake her in time for her to shower and dress before the sitter arrived. I didn’t push because I have learned that if she didn’t want to get up, Valorie could take care of helping her. At 11:15, she asked if she could stay in bed a little longer. I told her that was all right.

When Valorie arrived, I went back to the bedroom and told Kate that she was here and that I was going to the Y. She gave me a disapproving look but didn’t say anything. Valorie walked in the room to say hello, and I said my goodbyes.

When I returned four hours later, they were both seated in the family room. Kate was resting with her eyes closed. She didn’t show any sign that she was glad to see me. Valorie got up to leave and said goodbye. Kate didn’t say anything. As I walked Valorie to the door, she told me that she had helped Kate get to the shower and dressed. She said that twice Kate was very abrupt with her and said something like, “I can do that myself.” Valorie said when that happened, she backed off and let Kate do it on her own.

I could easily envision what happened. I told Valorie she is sometimes the same way with me. In this particular case, I believe Kate might have been more demonstrative than usual because she was bothered by my having left her. After Valorie was gone, I went back to Kate and told her I was glad to see her. She said, “I’m glad to see you too.” Her tone of voice led me to translate that to “Boy, am I glad you are here.” We didn’t say anything more at that time.

Later as we were going to dinner, I said, “I really enjoy being with you.” With some emotion she said, “I enjoy being with you too. <pause> I feel comfortable with you. I feel secure that you won’t let anything happen to me. I feel safe.” This is not the first or the second time she has said things like this. I don’t think she is afraid of being the object of an aggressive act by someone. I know that most (almost all) of the time she is unsure of where she is and what is going on around her. I am the constant helpmate for her. She has a feeling of complete trust. When I am not with her, she loses that sense of security. I believe that is especially true when she has a sitter with whom she has spent considerably less time than she has with me.

I have two emotional reactions to the situation. I feel like having a sitter less often. This is a case in which I will let my head take charge over the emotion. In the long run, I am going to need more help from sitters, not less. I think this is just a rough spot in the road. It isn’t one that should alter my overall plan.

The other emotion is a feeling of responsibility. I feel she needs me more now than ever. I want to make sure that the rest of her life is as smooth as it can be. That feeling was reinforced by a brief conversation we had last night.

We went to dinner with a couple we know from our music nights at Casa Bella. We ate at a new German restaurant near their house. We had never been there before, and I believe Kate was a bit uneasy. We got a durprise when we walked in. There is a bell connected to the door of the entrance. It has a surprisingly loud ring each time the door is opened. Kate is very sensitive to noises. (I scared her the other day when I turned on the faucet in the laundry. The sudden noise of the water frightened her.) The bell shook her momentarily. The menu items were very different. She initially tried to read the menu but quickly gave up. She had trouble following our conversation and had to ask questions to help her understand. She often asks me to slow down when I am talking to her. Following three other people, each of whom is a talker, is an impossibility. I really felt for her.

When we got in the car to go home, she said, “Richard, (yes, she remembered my name) I don’t understand what is happening. I’m so confused.” I asked if she could explain a little more. She couldn’t. I told her I wanted to help in any way I could. I reminded her of our wedding vows, specifically the part about “sickness and in health.” I told her I would always be with her. She said she understood that and has never doubted it. I realize, of course, that we attach different meanings to that. I know where we are headed. She doesn’t, but she does know she can count on me. I intend to honor that promise.

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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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Does Kate know me or not?

In my previous post, I focused on the inaccuracy of our stereotypes (generalizations) of people with dementia. In this post I am specifically thinking about caregivers and the conclusions we reach about the behavior of our loved ones. Many of those situations involve a judgment about things like what stage of the disease the PWD has reached, what she is able to do, and can she be left alone. Last spring, I was trying to draw a conclusion about Kate’s sleeping later in the morning. I wasn’t sure whether that represented a few isolated discrepancies from her previous sleeping pattern or the beginning of a new stage of her disease. After months, I finally recognized that she was, and still is, making a real change.

One of the judgments that caregivers frequently make involves what their loved one knows. It hasn’t happened recently, but I’ve been asked if Kate still knows me. That’s a good question. It’s one that seems to imply that she either knows or doesn’t know me. The best answer I can give right now is that “sometimes she does and sometimes she doesn’t,” but that doesn’t tell the whole story. Let’s take an example of something that happened at lunch a couple of days ago.

When she got up that day, her conversation suggested that she knew me. She didn’t ask my name or relationship, and she behaved in a manner that is consistent with the way she has behaved toward me for years. At lunch, we talked about our children. I presumed that, at that moment, she knew I was her husband. Moments later she said, “Who are you?” I asked her if she meant my name or my relationship to her. She said, “Your name first.” When I told her, she said, “And what are you to me?” I said, “I’m your husband.” Then she asked me to tell her my “full name.” I said, “Richard Lee Creighton.” She tried to repeat it, but only got the first name. She asked me again. Over the next few minutes, she asked a few other times. Once she asked her own name.

In most ways this experience was like many others we have had. In this particular instance, however, I was struck by how blurry the line between knowing and not knowing can be. As usual, I was also amazed at how comfortable she is when she repeatedly asks my name and her own. She displays no sense of hesitation about asking nor does she seem concerned that I might think it strange when she asks. She asks the way she would ask a stranger’s name. At the same time, her words and manner of relating to me suggest she knows me. I feel certain that is the way an observer at another table would have interpreted the situation.

I try not to quiz her too much about what she “knows,” but earlier this week I did. She asked my name and relationship. I told her, and then I said, “Tell me this. You didn’t know my name or that I am your husband, but you did seem to feel that I am someone you know. Is that right?” She said, “Yes, of course.” I didn’t push for any more. As I have surmised on other occasions, she usually recognizes that I am someone with whom she is familiar and someone with whom she is comfortable. It’s just that she sometimes doesn’t remember my name or our relationship.

After living with changes like this for a while, I would say there are different levels of knowing. One is to know my name. Another is to know that I am her husband. Another is to know that I am someone she recognizes. If I were to guess right now, I would say that (1) she usually doesn’t know my name, (2) about half the time she knows I am her husband, and (3) she almost always recognizes me as someone she knows and trusts.

Prior to six months ago, I believe she always knew my name and that I am her husband. She’s made a significant change in that time period. I suspect the next six months will bring more dramatic changes, but I expect she will continue to recognize me as someone she knows and trusts for some time to come, at least that is what I am hoping. I’m also beginning to think of that as the deepest kind of knowing. It’s similar to what we felt when we first met. We didn’t know anything about each other, but our intuitive abilities led us to sense a connection. That is something I don’t want to lose.

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Reflecting on Kate’s Intuitive Abilities. Part 2: Taste and Touch

By now you are well aware that Kate and I eat out for all our meals except breakfast. Thus, it should not surprise you that the sense of taste has played a relevant part in our lives. I can’t say, however, that it has brought with it the same degree of pleasure as music and our social experiences. Let me try to explain.

Kate and I are not “Foodies.” By that, I mean that we do not passionately explore a diverse variety of foods and ways in which they can be prepared. When we are traveling and when we dine out for special occasions, we may explore unique and tasty menu items. Since we eat out all the time, we don’t go to a lot of upscale restaurants. Most of them are everyday places.

That does not mean that the taste of food is irrelevant to us. On the contrary, we have found ourselves gravitating to food that we enjoy the most. For several years, I have ordered Kate’s meals for us. I do that based on the things that I know she likes, not necessarily what I think is best from a dietary standpoint. In other words, her taste in food and beverages does matter.

She has always liked Dr. Pepper (DP). It is not available at all the restaurants we frequent. When it is, that is what I have usually gotten for her. Her sense of taste, however, is something that has been changing. She no longer distinguishes the taste of different beverages as clearly as she used to. When she gets a DP, she frequently tells me “Something’s wrong with this.” Within the past year, I noticed that she was selecting a little of each of the beverages in the vending machine at Panera. She was no longer going straight to DP. The fact that she has gained weight has led me to order more iced tea half sweet and half unsweet. She has been happy with that. I still keep DP at home in the small cans but notice that she often doesn’t finish what she pours.

Apart from that, I choose specific food items that she likes. When we are eating a full meal, I often order salmon or scallops for her. She likes both. She also likes sweet potato fries. I order those when they are on the menu. In the sandwich line, she likes mostly turkey. One of the other changes in her taste has involved bacon. She doesn’t like the crispiness of bacon. I now ask that bacon be omitted from any sandwich that has them. Similarly, she doesn’t usually eat lettuce, so I omit that as well. I never get her a salad. The idea of a salad turns her off. That’s ironic because she used to make great salads.

Through experimentation we have settled into a array of items she likes at every restaurant we visit. She especially likes her Italian and Mexican meals, and she loves to add lots of Parmesan cheese to her pasta.

Both of us have always loved desserts. When we first married, we had dessert with every evening meal. Over the years, desserts became more of a treat for special occasions. Now we eat more desserts, about five times a week. That specifically relates to Kate’s desire for them. Don’t get me wrong. I love them just as much as she does; however, I am more prone to monitor what I eat than she is. My first reaction was to discourage eating more desserts. I had a second thought. Dessert is something we both enjoy, and I don’t want to look back and regret that I hadn’t taken advantage of the opportunity share that pleasure.

Speaking of desserts makes me think of the blueberry muffin she gets at Panera. That is something she has really enjoyed; however, now that she sleeps later in the morning, we don’t get there as often. When we do, it is in the afternoon. Then we usually just get something to drink.

Kate doesn’t demand a great deal with respect to her meals. She is getting what she wants. When you couple that with the other benefits of eating out, she is getting along well.

When I began to think of the role of touch in our lives, I initially thought of it as less important than the other senses. After thinking a little more, I’d have to say that it has played a significant complementary role in our overall relationship. Often that comes with routine expressions of affection. I believe we hug more than we did before Alzheimer’s. I know there are times when words don’t seem to be the right answer to a problem. When Kate has had a panic or anxiety attack, I have responded with a warm hug when I wasn’t sure what to say. There are times when we are in the car, usually on the way out of town, that she may reach across and simply touch my arm, hand, or leg. More often that that, she wakes up in the middle of the night, moves closer to me, and puts a hand on my arm. It’s just another way of saying “I love you,” but it’s an important one.

That leaves only the sense of smell. I’m not sure what to say about that except that it is something that I don’t see as having played a significant role in how well we get along with Alzheimer’s. Perhaps this is something I should pay more attention to in the future. Each of other senses, however, has been very important to us, and I expect them to last a good bit longer.

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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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Confusion in the Afternoon

After lunch yesterday, Kate and I spent almost three hours relaxing in our family room. It was a cool overcast day, and I made our first fire of the year. I don’t think we had more than one or two all last winter. I put on some music and began my previous post while Kate worked on her iPad. After two hours, she rested on the sofa though she didn’t go to sleep.

When she got up, we talked about going for an early dinner and how pleasant the afternoon had been. We also talked about all the good times we have had. As so often happens, she then asked my name and our relationship. Once again, she was surprised that we were married.

We talked a little more and then started to walk toward the garage. She stopped and with a puzzled look on her face, she said, “I don’t even know who I am.” I told her I could help her and picked up her “Big Sister Album” that her brother Ken had made for her. I showed her one of her baby pictures and her name. Then I turned to a page with our wedding photos and read the accompanying information to her. She was delighted and wanted to take the album to dinner with us. I suggested we leave it at home and go through it later. When we got home after dinner, she wanted to wait until today.

On the way home, she expressed her confidence in my driving and thanked me for taking such good care of her. I told her that I do it because I love her. I should say that I not only do things to care for her, but I have paid particular attention to cultivating a relationship of trust. I tell her I love her far more than I ever did before Alzheimer’s or even the early years after her diagnosis. I put an emphasis on this about two or three years ago. Prior to that we light-heartedly joked with each other. She was never one to joke, and over time, her jokes began to sound like more serious charges about my trying to control her life. When I noticed that, I backed away from almost all joking with her and adopted the approach of a more loving partner in her journey. I think that has paid dividends as she has become more dependent on me. She still talks about my trying to control more than she would like. She did that last night, but she also is able to say that she knows I do that with good intentions. I sense that she recognizes my desire to help her no matter what happens. I believe that is reflected in her expressions of appreciation that are becoming more frequent. For quite some time, I have said that we are a team and that we face everything together. Sometimes she uses that term when we work together on something. For example, last night I gave her my hand as she got out of the car. When she got up, I said, “You did it.” She said, “We did it. We’re a team.” She occasionally says something similar when I help her get dressed.

As we walked in the house after dinner, she asked what she could do. I told her I would see if there were something on TV that he might enjoy. I also mentioned that she could work puzzles on her iPad. She liked the idea of puzzles. She worked happily until I told her it was time for us to go to bed.

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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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Happy Moments: Part 2

Shortly after I had explained to Kate that Karen is our daughter and Lee is her husband, she shifted her focus to our relationship. She was happy and said, “I am beginning to feel normal again.” I asked her to explain what she meant. She stumbled on her words, but said, “I am feeling at ease, and I attribute that to you.” She also thanked me “for bringing me here. If it weren’t for you, I wouldn’t be here.” She went on to say how much she appreciated my patience with her and how that helped her to feel relaxed. Over the next twenty minutes to our hotel, she continued to express that sentiment. In some of her comments, she noted how many things I do for her that she can’t do. I don’t think she was speaking specifically about things she couldn’t do because of Alzheimer’s, but that is the way it sounded.

When we got to the hotel, she said, “You are my best friend. I feel I can tell you anything. I trust you.” This was mixed with an extension of the conversation we had had in the car. She reiterated how relaxed she is with me. Twice she said, “I feel we just connect, and we haven’t known each other that long.” I started to tell her that I was her husband and that we have been married fifty-five years but decided not to say anything. At various points I thought she knew me as her husband. At others I wasn’t sure. I do know that near the end of our conversation she said, “What’s your name?” To me this was a dramatic illustration of the power of feelings over her rational mind. It is also a reminder that it is only a matter of time before she won’t remember either my name or that I am her husband, but I will treasure moments like this one. She was happy, and although I felt a touch of sadness, I was happy for her.

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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.