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.

“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.

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.

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.

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.

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.

A Special Moment to Start the Day

Being Kate’s care partner brings with it the full range of emotional experiences from joy to sadness. As I have said so many times, we have been fortunate to share far more of those at the joyful end of the scale than the other end. Sometimes joy and sadness are intertwined. We had one of those moments a few minutes ago.

I was in the kitchen (my office) when I heard her say, “Hey.” I looked up at the display on my iPad. I didn’t see any sign of her. Then I heard a louder “Hey!” She wasn’t in the bedroom at all. She had gotten up without my seeing her on the video cam. I walked to the back and said, “Where are you?” She said, “I’m here. Where are you?” I walked down the hallway and heard her say, “Here” just before I saw her coming out of the guest room. I said, “I wondered where you were.” She said, “I didn’t know where you were.” I said, “I love you.” She said, “I love you too.” I gave her a hug and said, “Doesn’t it feel good to be with someone you love.” She agreed, and I said, “I hope I am your favorite husband.” She laughed and said, “Who are you?” I told her, and she said, “Who am I?” I said, “Kate Creighton, and you’re my wife.” She said, “I am?”

We started to walk back to the bedroom when I saw pictures of her maternal grandparents. I pointed them out and told her these were special people to her. She asked who they were, and I told her. She was quite interested and wanted to know more about them. I told her they were her mother’s parents. She asked her grandparents names one at a time, and I told her again. Across from those pictures is a photo of the home in which her father grew up. I told her this was an important place for her and explained the significance.

I walked her a little farther and showed her a picture of her father. I said, “This is a very special man in your life. Can you guess you that might be?” She couldn’t. I told her, and she said, “He looks like a good man.” I told her he was. Then showed her a photo of paternal grandfather and her uncle taken with managers of her grandfather’s lumber business. She didn’t recognize them or the photo but was keenly interested.

The next photo was of her mother when she was in her late teens, I believe. It is my favorite picture of her. I told her that she was also someone special in her life. She didn’t know who it was before I told her. It is a photo she likes as well. She said, “She’s pretty.” The last photo was of her father’s mother. Kate had no recollection of her at all. When I explained that she was her grandmother and that she was the first member of the family to attend TCU, she was excited.

It doesn’t seem that long ago that Kate could have walked along this hallway and told the same stories to accompany these pictures. It is sad that her memory is now virtually gone. She can’t remember them at all. At the same time, it was a moment of joy for me to tell her these stories and for her to hear them. It is moments like this that sustain both of as we move into the later stages of our journey.

A Rough Start Getting to Our Routine

Yesterday I woke Kate at 12:15 so that we could have lunch before picking up a church friend to attend an operetta concert in the afternoon. It was one of those mornings when she is quite confused and didn’t come around very quickly. She didn’t know anything. Who I am. Who she is. Where she was. She felt very insecure, but it was similar to the last time in that it was not a full anxiety or panic attack. Fortunately, she responded positively to me. She wanted me to hold her hand going to the bathroom and didn’t want me to leave her. Just before leaving the bathroom, I did or said something she didn’t like, and she snapped at me. Then she apologized and started to cry.

After she was dressed, she wanted to hold my hand as we walked to the kitchen to get her meds. She continued to whimper a little. She kept asking me if I were her daddy. I told her I was her husband. Each time she couldn’t believe it. When we got to the kitchen, she called me daddy and then said, “Are you my daddy?” I said, “Would you like me to be your daddy?” She responded enthusiastically that she did. I said, “I would be happy to be your daddy.” She asked if I really were. I told her the truth. She accepted that but not with enthusiasm. I believe we are going through a transition in which she often thinks of me as her father. As that happens, I will be much less likely to tell her the truth. Right now, I sense that she still wants the truth and is able to handle it. This is one more thing that demands taking it one step at a time and making an informed judgment as to what is best.

While she was taking her meds, I brought her the “Big Sister” album. She reacted the way she usually does. She commented on the smiles and the children’s eyes. Then she asked if she could take it with us. I told her she could. We took it to the restaurant where she continued to enjoy the photos until the food arrived. By that time, she was herself again. Leaving the restaurant, she said she wanted to rest as soon as we got home. This now seems an established habit. I explained that we were going to a concert. She didn’t complain.

When we arrived at the concert hall, I let Kate and our friend out and then parked the car. When I met them in the lobby, I learned that Kate felt sick. She couldn’t explain what it was. She just didn’t feel right. She seemed relieved that I was there and didn’t want me to leave. She was willing to go ahead and take a seat in the concert hall, but I decided that we should leave. It just wasn’t worth the chance. Our friend said she would leave as well. I told her I would be happy to come back for her. She didn’t want that. Just then, a mutual acquaintance walked up and spoke to us. She asked if he and his wife could take her home after the concert. He was happy to do so, and we went home. As we walked to the car, she wanted a bathroom. I asked if she could wait until we got home. She said she could. Once we were home and she had been to the bathroom, she felt better. That was when she finally got to rest and did so for two and a half hours before we went to dinner.

I think her problem was twofold. First, she was having abdominal action and was uncomfortable. Second, I think she felt insecure being with someone who appeared to be a stranger to Kate. Once I arrived in the lobby, she did not want me to leave her, not even to get the car. When we got home, it was the same. I held her hand all the way to the bathroom. She didn’t want me to leave her.

She was fine from the time we went to dinner until we went to bed. Having heard stories from other caregivers, I suspect we might see more days like this. The good news is that our track record for late in the day is quite good. I only remember one evening when she had a panic attack. Otherwise, it has been the most consistently positive part of our day. I often wonder if that is because it seems to be the most relaxed time of day.

Kate’s Intuitive Abilities Make for Special Moments

Kate enjoys life. Hardly a day goes by when I am not touched by things that she says or does. They let me know that even without a memory, she is still in touch with life through her intuitive abilities. For example, Sunday morning as we were about to leave for lunch, she saw a coaster on her bedside table. It has a picture of orange flowers on it. We have had this set of coasters for many years. She had put it on her bedside table sometime in the past few days. She had no memory of ever having seen it. She said, “Can I take this with us?” I told her it was hers, and she could take it. She took it with her as we walked through the family room to the kitchen. She stopped to look at it more closely in the light of the family room.

Walking to the car, she held the coaster close to her and said, “I don’t want to lose this.” She continued to admire it on the way to the restaurant. She said, “You’ll have to keep me from losing this.” As we pulled into a parking space, she said she didn’t know where to put it. “If we leave it in the car, you’ll have to help me find a place that nobody will see it.” She didn’t want anyone to take it. Then she decided to take it into the restaurant with her and asked if that would be all right with me. I told her it would, and she walked in with the coaster in her hand.

After we were seated and the server came to our table, Kate showed her the coaster right away. Then she placed it on the table to the left of her plate. When we were ready to leave, she noticed the coaster. She asked me if it was ours or “theirs.” I told her it was hers and that she had brought it from home. She was pleased and enjoyed looking at it all the way home. She even remembered to bring it inside, and we placed it exactly where she found it to start with. By then, she couldn’t remember that, but she was happy.

We have a lot of musical experiences that I find touching as well. Returning from lunch the other day, I turned on an album of songs from a variety of musicals. She likes all of them and started singing along with “Some Enchanted Evening.” I joined in with her. She looked at me and said, “Hey, you can really sing.” (At this point, I need to say that I am not a singer at all. I sang in several choral groups in college, but I don’t have a natural gift for singing and have never had any vocal training at all.) To me this illustrates another of her qualities that I find endearing. She is not a critic. She is impressed with just about everything that other people are able to do. There is a sad side, however. This must arise from her inability to do so many things, but I am touched by her ability to enjoy and respect whatever talent she observes in others. She really enjoyed hearing me sing. (Note: That hasn’t changed her opinion that I am not handsome and have a big nose, but she still thinks I’m a “nice guy.”)

When we got home, “True Love” by Cole Porter in the 50s was playing in the car. I started to turn off the engine when she stopped me. She wanted to hear the rest of he song. We sat there together her hand in mine until the last note when we went inside.

Yesterday she used a cup she has had about a year but never commented on until then. She was delighted by the colors on it.

These are all little things, but it makes me happy to see her enjoying herself. I am hopeful these intuitive abilities will remain with her for some time to come.

Three Hours Later

I was about to finish this post this morning when I received a phone call from my brother. When our conversation ended, it was time for lunch. Kate and I returned home about forty-five minutes ago. That’s when we experienced another special moment. It reminded me of a similar experience this past fall. The difference was that last fall she didn’t recognize our house as our current home. I was never sure, but it appeared that she either thought it was the house in which she had grown up or a previous house in which we had lived. Today she clearly knew it was ours.

It began as we entered the driveway. She commented on the house and said how much she liked it. The spring flowers on trees and shrubs are coming out, and I suggested we take a look at the back yard. We walked around the yard. She was taken with the azaleas and dogwoods.

We came back through the garage where she stopped to look at her collection of Dr. Pepper memorabilia. Once inside she loved looking from our family room through the glass doors to the back hard. As she often does, she commented on what a nice room it is. Then instead of going to the back to brush her teeth, she wanted to go to the living room. That’s when I became something of a tour guide telling her about the various pictures, knick knacks, and furnishings I thought might be of interest to her. I was right. It was really an emotional experience for her. She didn’t recognize her own or our daughter’s wedding portraits or portraits of her mother or grandfather, but she loved hearing about them. She took great pleasure in seeing her mother’s silver service and her grandmother’s china. Of course, there were also things like the fresco over the mantel and our dining room furniture that we had purchased ourselves. She hadn’t remembered any of the things she saw. Seeing things and hearing me tell her the connections to our lives was a special joy for her.

From there we went through the kitchen and back to the family room taking in other things that meant something to her. Then she wanted to lie down on the sofa in the family room while I went to brush my teeth. When I came back, she was getting up and going to the living room again. She wanted to rest on the sofa among the things she had seen earlier in our walk through. Yes, her intuitive abilities are alive and well and providing her much pleasure even though I am sure she doesn’t remember any of the specific connections to our lives I had told her only ten minutes before. That would require her rational abilities, and they are almost gone. I think we could all take a lesson from Kate.  She takes such pleasure in things that we take for granted. It’s a wonderful world.


Just as I was about to post this entry, Kate walked in the room and saw the picture of her and her brother Ken on the cover of the “Big Sister” album he made for her. She smiled and said, “I just love this picture.” She is now resting peacefully on the sofa across from me. She’s happy, and I’m happy.

A Nice End to a Good Week

It’s Sunday morning. Kate is still sleeping. I’m thinking about the good times we’ have had this week. Kate has experienced her normal confusion, but we have been active. Both of us have enjoyed ourselves. After our trip to Flatrock to see Jeanne Robertson, we arrived in Knoxville in time for our regular lunch at Bluefish. As the server walked away with our check, she stopped at the booth behind us and asked if they wanted dessert. Kate thought she was speaking to us and said, “What do you have?” Rather than call the server back, I told Kate that I would take her to Marble Slab on the way home. She thought that was a great idea. After eating our favorite ice cream concoctions, we went to the house. Kate was ready to rest. That was followed by working puzzles before going to dinner. Once home, we had a quiet evening watching YouTube video segments of Andre Rieu concerts. When we got into bed, we talked about what a good day it had been and how many good days we’ve had during our marriage. We finished the day like any other married couple would do. I said, “I love you.” She said, “I love you too.”

I treasure days like this.