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A Confusing Start

About 7:45 this morning, I saw on the video cam that Kate was getting out of bed. I walked to the bedroom and saw her standing at the foot of the bed. She was glad to see me, actually relieved though I didn’t realize it until a few minutes later. I asked if she wanted to go to the bathroom. She said she did and asked where it was. I walked her there. I left her in the bathroom and went back to the kitchen where I could watch the video cam to see when she was ready to go back to bed.

It wasn’t long before I heard her say, “Hey.” She had cracked the door open. When I got to her, she wanted to know what she should do now. I told her it was still early and that she should rest a little longer. As we walked, she thanked me for helping her. She said, “I don’t know anything. I don’t know what to do.” I told her I would help her. She thanked me again and said, “You’re so nice to me. You make me feel better.”

After she was in bed, she said, “I don’t even know where I am.” I explained that she was in her very own home in Knoxville. She said, “I am?” Then I told her it was our home. She was surprised and couldn’t understand how that had happened. As we talked, she began to relax. I told her I was going back to the kitchen and that she could call me if she needed anything. She asked my name. I told her and said, “Just call my name.” Then I said, “Or you could just say, ‘Hey.’” She repeated “Hey,” and I told her that was all she needed for me to come back. Before leaving, I asked if she would feel better if I sat in my chair beside the bed. She told me I didn’t need to do that. She thanked me again, and I left the room.

This was a moment in which I felt her complete dependence on me. She said it was frightening. I can’t imagine what it must feel like, but frightening seems to come close. Her memory is flying away, but she still retains the ability to recognize she has a problem and can’t understand why. It was a similar experience last summer that led me to remind her that she has Alzheimer’s. I chose not to tell her this time. I decided to focus solely on being compassionate in the words I spoke and in the tone of voice I used. I told her she was going to be all right, that I was with her and would help her. That seemed to work.

I wonder how she will feel when she gets up. It’s quite possible that she may not feel the same level of confusion. On the other hand, I know that someday the confusion will not go away. By then, she may not realize she has a problem at all. I don’t want that nor do I want her to suffer from recognizing how little she knows or understands. What I wish for most is something that can’t be. I wish she didn’t have this disease at all. Like all caregivers in my position, I have to focus on what I can do – make her life as pleasurable and frustration free as possible. That has served us well up to this point. I trust that it will carry us through to the end.

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A Winning Streak

We often hear about winning streaks in sports, but all of us have streaks in our everyday lives. We just don’t keep statistics in the same way. In the first place, we don’t usually categorize the various aspects of our lives. In sports we have such categories as consecutive wins, completed passes, passes without an interception, games with a hit, etc. Even if we did, we don’t go to the trouble of keeping records.

I’m thinking of streaks right now because Kate and I have had a streak of good days for over a week since she got over her cold. She’s still asleep, but I am optimistic that we will continue that streak today. A lot of little things make me feel a day has been good. Her happiness is probably at the top of the list. Something that goes along with that is the nature of our relationship. I work to avoid days when I have to push her to get places. Fortunately, she is good-natured. We work together well. Each of us wants to please the other.

The other day I saw something on Twitter that suggested a caregiver would do well to foster a sense of teamwork between himself and the person for whom he cares. I think that is very much the way Kate and I have worked together. When I push too much, she resists. She has her own sense of time and cannot hurry no matter what. Two days this past week, she had appointments with her ophthalmologist at 11:00 or shortly thereafter. For months, getting up that early has been a problem for her. This week I had no trouble at all. She was very cooperative even though she couldn’t remember why she had to see the eye doctor.

In addition to being cooperative, she is most appreciative. Those qualities are great reinforcers for me since I want to make her life as happy and trouble free as I can. Twice during the night we had experiences that illustrate how well this can go. The first occurred at 10:45 when she got up to go to the bathroom. I got up with her and walked with her. Then I did something that I haven’t done before and won’t do again. I usually wait with her. This time I decided to wait for her in bed. I didn’t expect to go back to sleep before she was finished, but I did. At 11:00, I looked up at the door to the bathroom and noticed that the door was closed. I got up to see if she was still in there. She wasn’t. I found her on the sofa in the family room. She couldn’t have been there long and was still awake. She was very glad to see me and said she didn’t know where to go. I said, “You must have been scared.” She said she was and thanked me. As we walked back to the bedroom, she thanked me again. All of this happened in the span of fifteen minutes, but it was an emotional experience for each of us. Each was glad to see the other, and we were happy as we got back in bed.

She got up a second time just before 6:00. I had just waked up myself and was about to get out of bed. I helped her to the bathroom and got her back to bed. As she always does, she repeatedly thanked me for showing her the way, helping her, and getting her back to bed. As she continues to decline, she is developing a greater sense of dependence on me. Her appreciative response makes me want to do the very best I can to make her life as easy and frustration free as possible.

So, after a string of good days, I don’t see any signs that it should be any different today. I won’t be keeping any statistics. They don’t really matter. What matters is that we are working together to make the very best of a diagnosis that no one wants. We’ve been successful thus far. I plan to keep that in mind as we approach the remaining part of our journey.

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A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

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Signs of a Cold or Alzheimer’s?

Kate’s cold and accompanying cough continued yesterday. I believe it was somewhat, but not dramatically, improved. It’s been an interesting cold in that her symptoms have been pretty even over the course of the past week. She hasn’t had a fever, and she goes long periods (an hour or two or more) without coughing. She doesn’t go quite as long without blowing her nose, but that also comes and goes.

Her overall behavior, however, suggests she has not been herself. She has been more confused and dependent. She has had greater difficulty working her jigsaw puzzles. She has actually had moments when she didn’t know what she should do with pieces once they were scattered across the screen of her iPad. I don’t mean she didn’t know the exact place to put them; she didn’t know what to do at all. She has also had several hallucinatory experiences. Two of those were a week ago, and one occurred last night.

We stopped at a traffic light on our way home from dinner, and she said, “Is there anything I can do to help you?” This came out of the blue for me. I didn’t know what she might have been thinking and said, “What made you ask that?” She said, “You’ve been going through so much.” I was still confused but decided not to question her. I simply assured her that I was getting along well. I told her that she had always been my support, that she should just continue that. She appeared relieved.

As usual, she worked on her iPad after we got home from dinner. She couldn’t remember how to start, that is, to open the puzzle app. This was not the first time. I showed her as I have done before. Once it was open, I showed her the various options she could choose. I walked away, and she immediately ran into a problem. She hit an arrow at the top left of the screen that took her to the store instead of selecting one of the puzzle options that filled the rest of the screen. That, too, was not the first time, but it is becoming more frequent. When she went back to the puzzles, she worked them for about an hour. Our son called as she was getting started. She said hello with her usual enthusiasm, but then quickly returned to her puzzles. While I was on the phone, she asked me for help several times. Her attention was clearly on the puzzles and not the phone call from Kevin.

When I got off the phone, she wanted to get ready for bed. First, she walked over to me and expressed her concern about me. She made reference to “that man.” I asked if she meant Kevin. She didn’t, but she was unable to tell me who “that man” is. I did grasp that she was again worried about me and the load I am carrying. One might think she was talking about my role as a caregiver, but it was not. I got the distinct impression that it had something to do with my work or volunteer activities. Interestingly, they are minimal these days; however, I am sure hallucinatory experiences often relate to distant memories.

She was tired and went to bed a little earlier than usual. She had done the same the night before. I think this could be related to her cold. After thirty minutes or so, she appeared to be asleep. I joined her thirty minutes later. When I did, I discovered that she was awake and whimpering. I asked her what was wrong. She didn’t (couldn’t?) explain but said, “The babies.” I told her I didn’t understand but wanted to help her. She went on to say, “I do want a baby, maybe two.” I mentioned our having had two babies who were now grown up. She was startled, not about having babies, but that she and I had babies. I told her I was her husband. She strongly denied it. I knew I needed to go in a different direction.

This was another time I felt explanations were irrelevant; she needed comfort. I told her just that and said, “I love you dearly, and I want to comfort you.” She said, “I know you do. I can tell by your voice that you’re not just saying that.” That began what may have been close to an hour of conversation during which she talked, and I gave supportive responses. I never fully understood what it was that prompted her worry. At one point, I asked her if she were afraid. She said she was. I was never able to discover why.

What I do know is that she thought she was young and unmarried. A couple of times she said, “I can have a child. I have one now.” One of those times she put both hands on her stomach as she said this. That may have meant she was carrying a child now. She also responded to me as if she knew I were her husband. I told her I loved her, and she said she loved me. Despite this, I don’t believe she ever recognized that I am her husband. I was just someone she felt very close to. She was very comfortable talking with me. Finally, she relaxed, and we both fell asleep.

It was a week ago yesterday afternoon that I noticed the first sign that she was getting sick. She coughed a few times, and it didn’t sound like a normal clearing of her throat. The next morning it was obvious she had a cold. It was that afternoon that she had an hallucination that involved our working in some kind of education project in another country. At the time I wondered if that could have been a side effect of the Robitussin DM or Zyrtec, the cold itself, or her Alzheimer’s.

One thing is clear. She has been noticeably different this week. I have eliminated the Robitussin and Zyrtec. I am left with the possibility of the cold itself or Alzheimer’s. At the moment, I believe Alzheimer’s is the primary cause and that the cold may have aggravated the situation. Time will tell.

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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.