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Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

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Trying to Understand Kate’s Expressions of Her Feelings

Kate had another anxiety attack yesterday. This time it occurred in connection with a different kind of feeling. She wasn’t frightened by not having any memory. She was worried about being separated from me while the sitter was here. Here is the way the day unfolded.

We had a good morning. Unlike five other days in the past week, Kate showed no signs of anxiety at all. She wasn’t eager to get up for lunch, but she did so without any resistance. She was very comfortable with me. I like to think that she knew my name and relationship, but she didn’t say anything specific to confirm my suspicion. We had a nice lunch and were able to get back home in plenty of time to meet our sitter with ten minutes to spare. As I left, I told her I was going to the Y. She didn’t express any reservations about my leaving. She was tired and was resting on the sofa in the family room.

When I returned home almost four hours later, I encountered a very different situation. I heard Mary say, “There he is.” Kate said, “Where?” Then I walked into the room. Kate was seated on the sofa. She had a very worried look on her face. Mary said, “She’s been stressed.” When Kate saw me, she gave a big sigh of relief. I walked over to her. Even though she was relieved to see me, she remained upset. She said, “Are you my one?” She’s never referred to me that way, but I assumed that the word “husband” or “friend” wouldn’t come to her. I said, “I am your one.” She said, “I didn’t know where you were? I was worried.” She was more emotional than she had been when she experienced her attacks earlier in the week. I sat down beside her and tried to console her. She was appreciative, but it took her a long time to calm down. In fact, she repeatedly said, “I couldn’t imagine where you were. I knew you wouldn’t leave me.” It was thirty minutes later before she was calm again. I was surprised that she could retain a memory of her feelings for such a long time.

The rest of the evening was uneventful. As I have reflected on a number of recent experiences, I see a common thread. Her intuitive side is more “alive” now than in the past. Her feelings don’t seem to be different in kind than they were in the past, just more intense. I see that in her appreciation of music and beauty. It is very evident in her reaction to sudden noises, especially those that occur when we are in restaurants. The screams of babies and the noises of dishes as they are removed from tables by the wait staff cause her to make louder audible responses than ever before. She complains about the brightness of the sun when we walk from the parking lot into a restaurant and back again. She is bothered more than usual by the heat anytime she is outside. She is irritated by waiting. That happens at restaurants and also at the doctor’s office the other day. At several of our recent music nights at Casa Bella, she has been uneasy when seated at a table with more people than usual. She is also more easily irritated by things I say or do. She is very sensitive.

I am now connecting her anxiety attacks of this week as part of the same pattern. The loss of her rational abilities leaves her with only her feelings. While that is what provides her with a great deal of pleasure, it also brings with it a greater amount of pain than it would have in the past.

This is just one more thing that I didn’t fully anticipate. I have always tried to keep her safe and happy. This change is one that requires me to be more attentive to those things that are uncomfortable for her and minimize them as much as I can. I definitely need to work with her sitters to enlist their help when I am away from the house.

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Adapting to Change

Kate has made many changes since her diagnosis past 8 ½ years ago. They are happening more rapidly now, and they are the kind of changes that alter our social activity. Some of them are more difficult for me to accept than others. One of those is forgetting who I am. The first time I was aware of this change was a year and a half ago. At that time, I wrote about it in a post on February 22, 2018. I am copying a portion of that below.

Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that. . . I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

I wasn’t ready for that. Since that time, I have often reported on conversations similar to the one above. It has been obvious that forgetting my name and that I am her husband has become more common than in early 2018; however, my present emotional response is no longer the same as it was then. That may sound surprising to some who have not gone through this experience, but caregivers are always adapting to the changes experienced by their loved ones. Forgetting a spouse’s name and relationship is just one more.

When I first notice new things that Kate is doing or not doing, it becomes a new reminder of what lies ahead. Her recent difficulty working jigsaw puzzles on the iPad is a good example. That’s a big one because that has been her primary activity for the past two or three years. Her increasing dependence on me is another. With the passage of time, however, I become more accustomed the changes. I keep adapting to a new reality.

I am aided by the knowledge that she needs me. We have given ourselves to each other for over fifty-six years, but we have never experienced anything comparable to the way in which Alzheimer’s has taken away her ability to survive on her own. That brings about an overwhelming drive to make her as happy, safe, and comfortable as I can. That emotion tends to override any sadness that accompanies her changes.

In addition, Kate and I still enjoy life and each other even in moments when she doesn’t remember me. Yesterday she had an extended time during which she thought I was a friend, not her husband. That would have been shocking two years ago but is becoming more natural for me now.

It started when I got home to relieve the sitter. She had been resting on the sofa in the family room. There was something about the way she greeted me that made me think that she didn’t realize that I was her husband. When we talked after Cindy left, it became clear that my suspicions were correct. She didn’t ask who I was; therefore, I didn’t tell her my name or our relationship. She recognized me a someone she knows and was very comfortable with me. We enjoyed ourselves during dinner, but she didn’t say anything that made me think that she of me as anything but a good friend.

When we got home, I played YouTube videos of Pavarotti and The Three Tenors as well as Jonas Kaufmann. We both enjoyed the music. It was a nice way to end the day. Yet it still appeared she didn’t know me as her husband. That was confirmed when I got into bed. She was still awake, and I moved close to her. We talked about having a nice day. She was very comfortable. I couldn’t resist testing her and made a not-so-subtle comment about our being married. She laughed. I said, “You don’t think we are married?” Very confidently, she said, “No.” Thus we went to sleep without her ever knowing or acknowledging that we are married. That is the longest period of time she has not recognized our relationship. I had my arm around her for a short time after we got in bed. I released my arm when I turned onto my back. Then she grasped my hand and gave it a squeeze. I felt happy just to know that she still thinks we have a special relationship. I would have been very unhappy with that two years ago.

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A Good Day, But Not Without Confusion

At 7:45 yesterday morning, I heard Kate make a sound and went to the bedroom. She was awake and smiled at me when I entered the room. I sat down on the bed beside her. She was wide awake, not at all groggy. She was also in a cheerful mood. It was a great way to begin the day.

I assumed that she just wanted to get up to go to the bathroom, but I soon discovered that she was ready to start the day. As I helped her dress, she wanted to do as much as she could and said, “I’m smart you know.” That began a conversation in which she said that women are as smart as men. She questioned whether I believed that. I told her I did. She said, “Good. You gave the right answer.” She said, “Someday women are going to be doing the same things as men.” I told her there were already changes being made. I told her about the enrollment numbers of women in college and in several different fields like medicine, law, and business. She was surprised and pleased. This was not the first time she has brought up the topic of the roles of men and women and specifically the discrimination women have faced. It comes up periodically.

We got ready leisurely and arrived at Panera at 9:00. As we walked in, we stopped to talk with several friends who regularly come for coffee and conversation after morning mass. Because we don’t get to Panera very often, it was especially nice to visit with them. Kate was unusually chatty and funny. One of the men said something about himself. A woman seated a couple of seats from him quickly contradicted him. Kate said, “You must be his wife.” Then he said something to which Kate had a funny comeback. I wish I could remember what it was. It was the kind of thing you might expect from someone who jokes frequently. It was clever and so quick. We all laughed. It was especially funny coming from Kate since it was something unexpected. She didn’t sound at all like someone with dementia.

After an hour, she was ready for home. That didn’t surprise me. She had missed at least two hours of her normal sleep by getting up so early. I also expected she would rest when we returned home. That proved to be correct.

It was a day for the sitter and my day for the Y and to have coffee with my friend, Mark Harrington. We arrived home from lunch a few minutes before Mary arrived. She came in and greeted Kate while I brushed my teeth and got myself ready to leave.  When I told Kate I was leaving, she said, “You’re leaving?” This is now a common question, but she doesn’t seem as concerned as she often does. I told her I would be back. I left with a good feeling.

Upon my return home, Mary was seated in the family room. I usually expect to see Kate resting on the sofa, but she wasn’t in the room at all. Mary called to Kate to let her know I was home. She was in the back of the house. I assumed she had been resting in one of the other bedrooms, but Mary said that she had been up a while and had been walking through all the rooms in the house. She told me that she had also gone outside on the patio. Then Kate walked into the room and said, “Isn’t this a great room?” I recognized right away what was going on. For well over a year she has often thought our house belongs to somebody else and that we have been staying here. For most of the past two or three days, however, that sense has been almost constant. Her going from room to room yesterday reminded me of the one-hour “tour” she and I took of the house about a year ago when she didn’t recognize it as our home. We went to dinner right after Mary left. As we pulled out of the garage, Kate said, “Is this the first time you’ve been to my school?”

She did a little better on her iPad last night but still had problems. She didn’t get into the store as much because she asked for my help before hitting the button that takes her there. Although I spent as much time helping her, I felt better because she didn’t experience the frustration that she had the previous night. I am better able to take the demands on me to help her than I am to see her discouraged.

It was also a day when I felt she recognized me as her husband. I could be wrong. I never asked, but she never said anything to make me think she didn’t. On the way to lunch, she said, “I like you. I like being with you. I even love you.” She called me by name once in the afternoon. She also expressed her appreciation to me for being patient with her. This reminds me of something she said at lunch the other day. She had torn a paper napkin into three pieces and placed her glass of tea on one, her knife and fork on another, and her bread plate on the third. I said, “It looks like you’re all ready for your meal.” She said, “Thank you for being so understanding of all the funny little things I do.” I wonder, “Does she recognize these things really are unusual?” I would love to know all that is going on in her brain.

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Interpreting Kate’s Feelings

Yesterday Kate greeted me with a smile when I went in to get her up. I always like that and want to think that means she knows my name and that I am her husband. She didn’t say anything that would let me know, and I didn’t ask. I told her I liked her smile and reminded her how often she comments about other people’s smiles. It seems to be one of the first things she notices. I told her I loved her. She said she loved me. Then she appeared very sad and her eyes filled with tears.

During most of our marriage, I rarely saw any tears. Since Alzheimer’s entered the picture, tears have become more common. As she declines, she is much more emotional. Tears flow at happy and sad moments. In moments like this particular one, I wonder if she experiences the same feelings I do. Every time I say, “I love you” I feel I am also saying, “Goodbye.” I know that I am losing a little bit of her every day. Her senses are keen. She knows something is wrong with her. At some level, I think she, too, feels that our time together is fleeting.

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“Little Things Mean A Lot”

In 1954, Billboard ranked Kitty Kallen’s “Little Things Mean A Lot” the number 1 song of the year. It apparently meant a lot to a lot of people. That popped into my head as I thought about today’s post. This follows an earlier post this week when I mentioned Kate’s delight in the “beauty” of her leftover sandwich at a restaurant in Asheville. She derives much pleasure from simple things. She’s not alone. I do too.

The other day someone I follow on Twitter mentioned that her father had written her a letter in which he said sometimes little things can carry you through an entire week. I find that to be true. In fact, it’s even better than that with Kate. During any given week, we encounter a number of touching moments that help me through the week. Let me tell you about three of them that occurred in the past 48 hours.

Thursday night after returning from opera night at Casa Bella, I turned on a YouTube video of selected segments from Andre Rieu concerts. Kate got in bed, and I went to take a shower. After showering, I noticed that Kate’s arms were uplifted, and she was holding her hands together as if she were praying. I think, in a way, she was. She was enraptured by the music. That was the second time I have observed this. The first was during the song “Bring Him Home” on a DVD video of Les Miserables. In both instances, her eyes were closed, and she was entranced throughout the song. I was touched to see her loving the music so deeply.

Last night, I tucked her bed before and told her I loved her. She looked surprised and said, “You do?” I knew immediately that this was one of those moments when she didn’t recall that we are married and said, “Yes.” She said, “I’m glad. I was hoping you did.” I said, “I love you.” She said, “Me too.” It was such a little thing; however, at this stage of her Alzheimer’s, it means a lot to me. She may not always know my name or that I am her husband, but she still has the same feelings.

The third moment actually occurred over a three-hour period between 1:00 and 4:00 this morning. I got up at 1:05 to go to the bathroom. When I got back in bed, she moved close to me and put her arm over my chest. She moved a bit during the next three hours but not much. I think she was pretty much asleep during the entire time. She chuckled a few times and said a few words that I didn’t understand. I think she was dreaming. What struck me was how naturally she held me. I took it as an expression of love. Once again, she is losing her memory of my name and her own and the fact that we are married, but she retains her feelings. Right now that is worth its weight in gold.

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Our Fifty-Sixth Anniversary

We had a nice day yesterday. It was our 56th anniversary. Quite a few times, we have been out of town celebrating the occasion. Tomorrow we are making an overnight trip to Asheville, but we’ll be back the following day. The trip is really more for me than for Kate. She can’t remember that it was our anniversary or that we have often celebrated there, but I remember. This is likely our last trip. I would like to see a couple of people who have been especially kind to us on past visits. One is a woman who works behind the desk at the hotel. The other is a server who has taken care of us at three different restaurants and is now working at a fourth. They are like so many others we see on our daily visits to restaurants around here in Knoxville. I want them to know how important they are to people like Kate and me. They all play a vital role in our own “unrecognized” support system.

I did something different with our sitter yesterday. I asked her to meet us for lunch, and she could take Kate back home. After we sat down, Kate played the role of a hostess and said to her, “Tell me your name.” She said, “Mary.” Kate said, “That’s a nice name.” I should mention that Mary is the only sitter who has been with us since I engaged sitters a year and eight months ago. Then Kate proceeded to point to me and said, “I’m his daughter.” Neither of us corrected her.

When I returned home, I found the two of them in the family room where Kate was looking through her “Big Sister” album. I sat down with her, and we went through the rest of the book together. She continues to enjoy this album, but she never shows any improvement in her ability to recognize the people in every photo. She does generally recognize the photo of herself on the cover and often recognizes her brother who is seated beside her.

I had bought an anniversary card for her and written a short note printed with a 32-point font so that she might be able to read it. I read it for her but plan to put it in her memory book. We shared a tender moment as we reflected on our marriage and how fortunate we have been. Then we went to dinner and relaxed with music until bedtime.

She was in bed about thirty minutes before me. When I got in bed, I moved close to her and put my arm around her. I said, “We had another good day, didn’t we?” She agreed. I said, “We had a nice anniversary.” She said, “Anniversary for what?” I said, “It’s our wedding anniversary.” She laughed, something she has done quite a few times when she doesn’t remember that we are married. I said, “Don’t you believe we’re married?” She said she didn’t. I said, “Then how do you explain that we’re snuggled up in bed like this ?” She said, “Well, you’re very nice to talk with.” I said, “I love you.” She said, ‘I love you too.”

Life is different these days, but I hope you can tell that we still enjoy life and each other.

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The Most Predictable Time of the Day

I’m never quite sure what Kate will be like when she wakes up. Confusion is common. A number of times she has been very disturbed. Sometimes she appears perfectly normal. That is, she doesn’t appear confused until she asks, “Where are we?” Sometimes she seems wide awake and happy. Other times, she acts like I am about to interfere with her rest. She is usually right about that.

Mornings represent a striking contrast with our evenings. She almost always feels completely at ease. I can’t identify a precise time this happens. I know it starts much earlier in the day when we leave the house. That is true whether we leave at 9:30 or 10:00 for Panera or closer to noon for lunch.

In her second book, Dementia with Dignity, Judy Cornish devotes the major portion of her book to “mood” and its relevance for those who care for people with dementia. She talks about the ability of PWD to read their caregivers moods. Having learned the importance the senses of PWD, I don’t find that surprising. This ability has significant implications for relating to PWD. Caregivers face many things they cannot control. It’s frustrating. Controlling mood, however, is something that caregivers can, at least to some extent, control. Whatever the caregiver’s mood, the PWD can read that and is more likely mimic it. If the caregiver is uneasy, the PWD is likely to become uneasy as well.

In earlier posts, I have suggested that Kate becomes more relaxed throughout the day. I have attributed that to the accumulation of information that makes her feel comfortable. She may not be any better at remembering the names of people and places, but she senses a lot of things with which she is familiar from the past. Cornish’s views on mood are making me think more carefully about my role as a “manager” of them. I am more sensitive to the fact that I can play a role in making her more or less at ease.

When I think about it, I believe our everyday experiences tell us one person’s mood can affect someone else. I have often said in this blog that “When Kate is happy, I am happy.” That isn’t unique to the relationship of caregivers and PWD. That is true for spouses, for parents and their children, or even for one stranger encountering another.

There are at least two important differences, however, in the relationship of a caregiver and the PWD. First, the PWD has lost her rational ability to control her emotions or to work with someone else to do so. Second, the caregiver is the one who is “officially” in charge. If any changes are to be made, it is the caregiver’s responsibility to make them.

In relationships between spouses, we generally expect  both people to have sufficient rational ability to play a role in maintaining the appropriate moods (though we know that isn’t always the case). The same is true for strangers. It’s a bit different with parents and children. In this case, parents are in charge, and part of their responsibility is teaching their children learn rational ways to behave in social relationships. Children can learn. PWD can’t.

With these things in mind, I believe I have unconsciously assumed that management of Kate’s mood is part of my caregiving role. I wasn’t aware that my own mood might be making a difference in hers. Well, to be honest, I have felt that coming in to wake her in the morning has sometimes made her grumpy. That seems legitimate. If were sleeping soundly and didn’t see any reason to get up, I might be grumpy too. That is why I started waking her up so gently. I usually play music that I know she enjoys for 15-30 minutes before making an effort to rouse her. Even then, I wake her gently and allow plenty of time to avoid my rushing her.

Following this procedure seems to work, but not always. That is when I have to work harder not to push. I try to be very careful in the way I speak to her. I am as calm and relaxed as I can be. There are times when I say, “You don’t have to rush. You have plenty of time.” She sometimes doubts me and says somewhat gruffly, “Are you sure?” I continue to be calm, and her mood begins to change. It isn’t unusual for her to apologize for the way she spoke to me.

This isn’t always easy for a caregiver. For many, it’s very hard. That’s because our emotions often play such a key role in how we respond to things that irritate us. The role of a caregiver demands a greater emphasis on our rational skills than our roles in other relationships. We have to double our efforts. Our loved ones cannot do it. They have lost those skills.

Let’s go back to the fact that Kate’s mood is at its best in the evening. I believe creating that mood starts in the morning when she gets up. It’s no challenge at all if she wakes up in a good mood. There is little work to be done except to reinforce it throughout the day. If she is grumpy, however, it’s going to require a rational control of my responses in order to shift her mood. I am grateful she responds so easily. I love the reward of a good mood that peaks in the evening. It’s a great way to end the day.

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A Reminder of How Sharp She Can Be

Today as we left the restaurant where we had lunch, I saw a decal for the University of Miami. I commented that we don’t see many of those around here and that my dad had wanted me to go there mainly because it was close to home. She said, “If you had done that, you wouldn’t have met me.” Intending to be playful I said, “I might have met some glamorous Miami girl.” I waited a moment for her comeback. She paused just long enough that I thought she hadn’t heard me. Then she said, “She probably would have thrown you out in a couple of months.” I told her she was sharp and congratulated her on a perfect reply.

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Not a Good Way to Start the Day

“It’s a New Day,” but I’m not “feeling good” this morning. About 7:15, the video cam alerted me that Kate was about to get up. I went to the bedroom to find her confused. I told her good morning and asked if I could help her. She said, “I don’t know. I don’t know what’s going on.” As in most of the other occurrences like this, she wasn’t having a panic or anxiety attack. She just looked puzzled about not knowing “what’s going on.” She was never able to say more than that. Based on past experience, I am sure it was waking up and not knowing where she is, why she is here, and who she is. She didn’t ask, but I gave her my name and hers and told her that she was in our house in Knoxville. I added that she was in her very own bed. She didn’t challenge any of that, but it didn’t seem to reduce her confusion.

She asked me what she should do. I told her that she usually liked to get up to go to the bathroom about this time. She asked where the bathroom was and asked if I would show her. I did and then took her back to bed. She was still puzzled. I told her I thought she just woke up and was groggy. I pointed out the window to our back yard. I reminded her of how often she looks out the window and comments on “all the green.” She seemed to recognize the yard. After getting in bed, she asked where I was going to be. I asked if she would like me to sit in my chair beside the bed. She said she would, and that is where I am right now. It sounds like she has gone back to sleep. There is a good chance that she will be fine when she wakes up again. I’ll just have to wait and see.

Moments like this always bring back memories of my mother. She used to say, “I don’t know what’s wrong with me.” That was when I first recognized how wrong people can be when they say things like “Well, at least she doesn’t know.” It was clear to me that my mother knew something was wrong with her. I can say the same thing about Kate. She understands and is disturbed by what is happening. I am grateful that this is not a constant pattern. Most of the time she simply asks where she is, who I am, and who she is without a hint of fear or anxiety. I think I handle the responsibilities of being her caregiver reasonably well. The part that is the biggest problem for me is seeing her when she is disturbed. I hope we are not in for much more of this.