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Follow-Up on Dependence

Yesterday when I returned home to relieve the sitter, Kate was resting on the sofa in the family room. I walked Anita to her car to find out how things had gone. She said they had had a good day. She had met us at Panera but she said they didn’t stay long after I left. I was pleased to hear her say that they had spent a long time going through the photobook that Kate’s brother had made for her. She said that Kate enjoyed telling her about all the people in the pictures. This made me especially happy because I had been concerned that Kate was not enjoying her time with Anita as much as she does with Mary.

Anita told me that Kate had asked about me a couple of times, wondering when I would be home. That is the first time Anita has said anything like this. I took note because Mary has also mentioned Kate’s asking about me. Kate had wanted to be home when I got there. These are little things and may have no significance, but I think they are consistent with her increasing sense of dependence on me. It is more than just the things I do for her. From what she tells me, she just feels better when we are together.

After Anita left, Kate continued to rest a little longer. Then she was ready to go out. We went to Panera. We had been seated for about fifteen minutes, when she said, “I like Panera.” Then she commented on the general atmosphere and the people who were there. She continued working her jigsaw puzzles on her iPad. In a few minutes she stopped. She said, “I like being here with you.” I said, “I’m glad. I like being with you.” As she often does, she moved her lips to say, “I love you.” At the same time, she brings her index finger to her lips and then points to me. Then I said, “We’ve done many special things over the years. Many of them, like being together at Panera, have been ordinary things, but they’ve been special to us. And we’re going to have many more.”

I still see signs of Kate’s desire to be independent. At home after dinner, she brought out clothes for her to wear today. She had a pair of pants, a top, underwear, 3 pair of socks, and 2 pair of shoes. She does this once in a while. I take it as further recognition that it is confusing to get her things together at the last minute. This way it’s done for her when she wake up. Her dependence on me is even reflected in this simple act of preparation. She asked me to check her and make sure she had everything. I assured her that did. Moments like are very touching.

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A Quiet but Nice Day

Kate slept a little later this morning, so we didn’t get to Panera until just after 11:00. Then Andriana’s turned out to be busier than usual. That meant it took a little longer for lunch which actually worked in our favor. This has been one of those days when Kate has asked more questions about our family (her father’s name, my father’s name, our children, and where we live). I took advantage of that time to reminisce with her. I was partially motivated by her anxiety attack week before last. That night she didn’t know who she who or where she was. Since then I have been trying to give her a little more information about her and her family.

Today’s conversation dealt largely with our attendance at so many live performances since our first date to Handel’s Messiah. I reminded her that we began our 50th anniversary celebration with a trip to New York City during the Christmas season where we attended Messiah at St. Thomas Episcopal Church.

Then I gave her a Cliff Notes’ summary of other performances we have enjoyed since we married. Most have involved musical theater. The first Broadway and Off-Broadway musicals we attended were on our first trip together to New York in 1967. We saw the original productions of Man of La Mancha and Cabaret. Since then we have seen as many as 30-40 shows there and many more here in Knoxville. We have also had season tickets to the Knoxville Symphony for 30 years. We haven’t generally attended some of the more popular entertainers, but we have been to concerts by Louis Armstrong, The Mamas and the Papas, Gloria Loring, Eartha Kitt, Jimmy Buffet, Marvin Hamlisch, Bette Midler, Billy Joel and Elton John, Tony Bennett, Paul McCartney, Art Garfunkel, and Willie Nelson. Opera has more recently entered our lives but is a favorite. We’ve enjoyed opera at The Met in NYC, Vienna, Berlin, Amsterdam, Zurich, and Sydney as well as quite a number of the Live in HD at The Met performances broadcast live in local theaters.

I went through these things knowing that she wouldn’t remember many, if any, of the things we had done. She does, however, remember that we have attended lots of events like these. More importantly, she was very attentive and seemed to enjoy my them bringing up. At the end of our reminiscing, she noted how fortunate we have been to have had so many good times together. I agree and will cherish the memories when we are no longer able to share them.

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Success: Three Times in a Row

As I suggested in my previous post, I took Kate back to see Won’t You Be My Neighbor? yesterday. That was the third time in the past eight days. It was, as they say, a “smashing success.” Once again, the theater was packed with an appreciative audience offering its applause when it ended.

Throughout the film, I kept looking over at Kate to see how she was responding. At various moments throughout the film, she expressed audible pleasure. I wasn’t surprised, but particularly struck, when she responded appropriately to things that were both funny and sad. I’ve said before that she generally understands what she hears, but she can’t retain it long enough for the knowledge to help her understand what follows. As the review in the NY Times notes, the producer gives its viewers a “feeling” for Rogers and his connection with children. I know that Kate understood that feeling.

On the way out, we bumped into a friend in the lobby. He commented about being a regular at this theater. When we parted, Kate smiled and said, “Well, I’m glad to know where we are.” We’ve also been regulars at this theater for many years, but I wasn’t surprised that she didn’t remember.

In the car, she said she wanted to read more about the film and Mr. Rogers. I told her we could check the Times review. She liked the idea. I read it to her shortly after we arrived at home. She listened intently. About midway through, she said, “I want to see it.” When I finished, she said, “I may want to see it twice.” I can’t fully express how much pleasure I got out of the fact that she liked both the movie and the review even if she can’t remember either right now.

This brings to mind something I have often read in a variety sources on caregiving. They suggest the importance of living in the world of the person with dementia rather than trying to get the PWD to live in our world. I think that is what Kate and I have been doing. It not only works for her; it works for me as well. Had it not been for her I would not have gone to see the movie even a second time. Even though I liked it as much as she did, I would have thought it silly to go again so soon. By living her way, I got to enjoy the movie another two times. I’m finding the same thing with the DVDs of musicals I have purchased in the past month. We’ve watched the 25th anniversary concert of Les Miserables twice, the last 30-40 minutes three times.

Her world is clearly different, and I am not denying the sadness I feel at her loss of her memory for names, places, and events. On the other hand, we’ve focused on music, theater, movies, and social engagement. Those are things we mutually enjoy. They continue to add to the quality of our lives, and I am grateful.

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Eating out has its challenges.

Occasionally, someone asks how, or if, I am able to maintain a balanced, nutritional diet since we eat out for all our meals (lunch and dinner). The answer is I find it challenging. Kate and I are drawn to slightly different food items. That has led me to repeatedly visit restaurants where I know she and I will both be happy.

She has a much stronger preference for carbs than I do. I don’t mean that I don’t like them. I do, but I attempt to control my diet by eating salads for most lunches and some dinners. Typically, I avoid bread except on Sunday when we eat at Andriana’s. I like their bread more than other places. We also share lots of meals. That helps a lot. For example, at the Bonefish Grill last night, we split an entrée of 4 grilled shrimp and 4 scallops. It came with a small house salad which I ate. For our sides, we got sautéed spinach and mashed sweet potatoes. I ate the spinach and Kate ate the sweet potatoes. This works pretty well for me.

The big problem for us is desserts. We both love them. For a long time, however, we have only eaten dessert infrequently. The major exception is when we eat at Casa Bella. Their Amoretto cheese cake has been a favorite of ours for many years. We always split a piece when we are there. That was fine when we were just going there periodically. When they started their music nights, that meant eating there three times a month. More recently, we’ve started going to another small Italian restaurant that makes its own gelato. We eat there every Wednesday night. We’ve added a single scoop of it to our weekly routine. We’ve gone to Carla’s regularly for about a year. We eat lunch there on Tuesday. A few months ago, we discovered they also make their own gelato, and we love it. We now get one scoop of it each week, and it’s a little larger than the one we get on Wednesday nights.

We’ve eaten at Andriana’s on Sundays the past three years or so. We had never had a dessert there until a few weeks ago. For some reason, our server asked if we would like dessert. She probably hadn’t done that since the first few times we had gone there. As I was about to say no, Kate said, “What do you have?” I knew it was all over then. It turns out they had a special that day, a banana pudding cake. It was a yellow cake with two thick layers of banana pudding and a heavy cream cheese icing. Since then we have had dessert two other times. I’m afraid this could be habit forming.

To make matters worse, we’ve replaced our regular Tuesday night restaurant with the Bonefish Grill. As I noted above, we split a meal there. I failed to mention that it comes with dessert.  <g>

Here’s the real dilemma for me. I could use my will power and skip the desserts; however, one of the pleasures of our marriage involves our sharing desserts. I don’t know how much longer this will last. In the meantime, I have opted to keep it going. I’ll have to figure another way to keep my weight down.

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Changes in Conversation

I’ve heard other caregivers express sorrow over the changes in everyday conversation with their spouses. I’ve had the same experience with Kate. During the first two years after her diagnosis, our conversation was pretty much the same as it had always been. Gradually, we talked less and less. I think two things accounted for the change. First, I’ve always been a bigger talker than Kate. My parents were incessant talkers. I think my brother and I were heavily influenced by them. Kate has always been able to handle everyday social situations with ease, but she doesn’t have the same drive to talk that my brother and I have. When Alzheimer’s entered her life, she became quieter. We would go long stretches with silence, something that is a bit of a problem for me. I also found that when I would tell her something I was excited about, she didn’t respond in the way she would have previously. Our conversations became one-sided. Even talkers need a little encouragement to keep talking. She just didn’t provide it.

The second thing that accounts for this change is that a lot of conversation relies on memory. In almost any conversation, we refer to things that happened or that we talked about previously. As Kate’s memory declined, she lost the information she needed to carry on a conversation. Each time I would start a conversation, she would be puzzled because she couldn’t remember what I was referring to.

As a result, we talked very little. I felt especially uneasy when we were in restaurants. She wasn’t bothered at all. She could go through a whole meal without saying anything. Frequently, she would close her eyes as though she was going to sleep. Sometimes I wondered if people thought we were having some kind of marital problem. Over time, I learned to accept this, but I still missed our conversations.

Looking back, I believe I was slower to live in her world than I should have been. When she talked, her conversation related to her family. She has a deep love and admiration for her mother. Her long-term memory was still pretty good. What I have only grasped more recently is that feelings last much longer than specific facts. Gradually, we have both evolved into conversations that involve our feelings about both of our families and about our lives in general. We reflect on our friends, the places we have lived, the things we have done, our travel, and other highlights of our marriage.

This change in focus has had a significant impact on our conversation. It is still quite different than before Alzheimer’s, but it is enjoyable for both of us. It depends on my initiating the conversation. I bring up as many different things about our marriage and our families as I can remember. That provides a wealth of topics. The good news is that we can keep repeating them, and they are always new to her. I try to keep the focus on our feelings for the events of our lives rather than simply the facts. The facts provide a way to bring back the feelings. I admit it doesn’t always work the way I had intended. For example, last night I brought up her visit to the Jeu de Paume in Paris with our daughter in 1973. I told her they saw somebody special. Kate’s eyes lit up. It turned out that she didn’t remember the experience itself or that it was Julie Andrews and her daughter they had seen. On the other hand, she enjoyed the story I told her. That is true for almost all of the things I bring up. It’s not a loss, however. She experiences them in the moment I tell her. It’s the way children enjoy the stories their parents tell them. This is working for both of us.

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Facing Reality

Yesterday began pretty much like most days. Kate’s sleeping pattern has been somewhat erratic. I started to wake her up just before 11:00 so that we might have lunch before the sitter arrived at 1:00. It took her longer to get out of bed than usual, but I didn’t think much about that.

I decided to go to Panera for lunch since we were a little late getting away. I called the sitter to meet us there. As soon as we sat down, Kate said, “Does this place have a name?” That, too, is not unusual. Then she asked, “What’s the name of this town?” I told her Knoxville and that we had lived here 47 years. She was as surprised as she usually is. She asked the same question several more times.

When Mary arrived, Kate seemed perfectly normal. When I left, she didn’t show any reservations about my leaving. When I returned home, Kate was in the back of the house. Mary said Kate rested a little while I was away. Although she had plenty of sleep the previous night, I wasn’t too surprised about that.

After Mary left, Kate was ready to go as well. We went back to Panera for about 30 minutes before going to dinner. When we got out of the car, she asked, “Where are we?” During dinner, she must have asked another five or six times. As we left the restaurant, she asked again. I told her again, and she said, “So, we’re not in Fort Worth?” I said, No, we’re in Knoxville. We’ve lived here 47 years.”

The previous night we had watched half of the movie South Pacific. We had enjoyed it. All the music was so very familiar. We watched the second half last night. Kate started out working puzzles on her iPad but became engaged in the movie. She put the iPad down.

When it was over, I started to get ready for my shower. A moment later, she had a look of concern on her face. She called my name, and I went over to her. She said, “I don’t know what’s going on. I don’t know who I am or where we are?” I’m unable to find the words to adequately express her emotion. It was a look of puzzlement or fear. This was different from simply asking her name which has happened a few times recently.

I said, “Let’s take some time to talk. I think I can help you. I could show you some pictures of your family. Would you like to stay here in the bedroom or go to the family room?” She wanted to go in the family room. We sat on the love seat. On the table was a photo book that her brother Ken had made with photos of their father’s family. I picked it up and showed her pictures of her grandparents. She didn’t remember them at all. She has gone through this album many times. I might have thought the photos themselves would have jarred her memory. They didn’t. A moment later, she said, “Why don’t you show me tomorrow when I am thinking more clearly.”

I put the book down. I looked at her and said, “Can you tell me how you are feeling?” She said something like, “I don’t know. I just don’t know where I am and what’s going on.” I said, “Are you afraid?” She said, “No.” I asked if she was confused. She said, “Yes. I just don’t know what’s happening to me?” At that moment, and right now as I write, tears welled up in my eyes.

We haven’t spoken about her Alzheimer’s in years. It isn’t something she has wanted to talk about. Recently, I have wondered if she even remembered that she has the disease. Over the years, I had decided there was little reason for me to bring it up. Faced with this particular situation, however, I said, “What you are experiencing is caused by Alzheimer’s. It’s a natural part of having this disease.” Very calmly, she said, “I knew I had it, but I haven’t thought about it in years. I had forgotten.”

I didn’t go on to say any more about Alzheimer’s. Instead, I said, “I want you to know that I will always be here for you.” She said, “I know that. I’ve never doubted that.” She went on to say how fortunate we are to have had such a good marriage. As she often does, she also said how fortunate we are that our children have turned out so well.

I reminded her that we have been married 55 years and said, “During that time we have had so many great experiences.” She asked me to tell her some of those experiences. For the next fifteen minutes or so, I talked about the places we have lived and the special things we have done. We both enjoyed having this moment of reflection. It wasn’t that we don’t reflect. We do that a lot. In that moment, however, it seemed more special than usual. When we finished, seemed seemed more relaxed though probably still confused. I think we both felt comforted by our conversation.

Over the course of the past six months or so, Kate has been on a gradual, but noticeable, decline that is a sign of what will be the hardest part of our journey. Her experience last night brought the harsh reality of Alzheimer’s to the forefront of our lives. We have lived as if this day might not come. I knew it would, but it’s painful to watch someone you love go through it.

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There ARE humorous moments.

In the car on the way to lunch today, Kate said, “What city is this?” I said, “Knoxville, Tennessee.” A couple of minutes later, she asked again. I said, “Knoxville, Tennessee, where we have lived for 47 years.” She was surprised as she always is when I tell her this. She said, “I guess that means I’m old.” Though I am only six months older than she, I said, “Think about me. I’m 78.” With a smile on her face she quickly responded, “Well, you’re ancient.” She still has her sense of humor.

While we were at lunch, she asked me at least three more times where we were. One of those times was immediately after I had told her. A similar thing happened on the way home after lunch. She asked me to tell her my full name. Right after I said it, she said, “Say it again.” I did and then asked her to say it. She got the first name but was stumped on my middle and last names. She didn’t express any frustration. She just laughed. I laughed with her. Of course, it’s really sad, but it feels good to laugh, especially when she initiates it.

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A Mother’s Love

I got in bed last night about thirty minutes after Kate. That’s rather typical. Sometimes it’s a little longer. She was still awake and said that she had been waiting for me, wondering what I was doing. I had been reading in my chair right beside the bed. Until the past few months, I had been going in the family room and reading so as not to disturb her. When I discovered that left her feeling alone, I started reading in the bedroom. Since I read from my iPad, I have no trouble reading in the semi-dark room. Even though I am nearby, I find that she feels better when I finally get in bed with her.

After snuggling up close to her, she said in a very childlike way, “Tell me about our children.” I did. We talked a few minutes more and she again said, “Tell me about our children.” It was like a child who wants her mother to tell her favorite story once again. Over the past 4-6 months, I’ve grown accustomed to her asking me to tell her our children’s names or sometimes asking “Do we have children?” This was the first time, however, that she has asked in this way, and it opened my eyes to a reinterpretation of her asking.

She asks me other people’s names continuously throughout the day. That almost always occurs when I have said something like “Today we are going to see the Robinsons.” Her typical response would be “What are their names?” When she asks our children’s names, it isn’t usually prompted by anything I’ve said. For example, we may be driving in the car, not even talking, when she says, “What are our children’s names?”

At first, I interpreted her questions as a simple request for information. I also wondered why she seemed to ask about our children’s names as much or more than other people’s names. She should have been able to remember them much longer than those of others.

Last night when she said, “Tell me about our children,” I don’t think it was because she is simply forgetting their names like those of everybody else. It’s precisely the opposite. Her many unprompted requests for their names is because they do matter so much to her. She loves them dearly. They are precious to her, but their names are slowly slipping away. It’s her “mother’s love” for her children that is prompting her questions.

In addition to forgetting their names, I am sure she is forgetting most of the things about them. She hasn’t forgotten her feelings for them, however. She is doing her best to hold on to the last memories she has of them. I intend to do my best to help her.

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Mike and Me

I think most caregivers have an interest in how their experiences compare to others. That is certainly true for me. Since Kate’s diagnosis, I have read quite a few books written by other caregivers or people with dementia. The stories and the ways in which they are told are very diverse. I always take special note of both the similarities and differences between their experiences and my own. In general, our story has involved fewer struggles and complications than the ones I have read about.

Last night, I started a new book, Mike and Me, by Rosalys Peel. I was immediately struck by several ways that her experience with Mike was like Kate’s and mine. It’s far too early for me to comment in detail, but one thing stands out. It sounds like their relationship and approach to living with Alzheimer’s is very much like our own. From the outset and the end, they were committed to taking advantage of their time together. They knew there were many aspects of the disease that were beyond their control. Their focus was on those things they could control.

Their story provides an optimistic perspective on a disease that brings with it a host of challenges and adjustments for both the PWD and the caregiver. There have been times when I felt I didn’t want to talk or write about our experiences because we have gotten along so well. Many caregivers gain support and encouragement from the struggles of others. I learn from those. They help me appreciate our own situation, but I draw my greatest support from those who have successfully maneuvered their way through this disease. Interestingly, Twitter has introduced me to many of those stories. Mike and Me is one of those.

PWD are not all alike. Neither are their caregivers. Despite the immediate connection I feel with their situation, I suspect (too early in the book to be sure) there is a difference between Kate’s approach to her diagnosis and Mike’s. Kate has always wanted to be private about it. It’s been 7 ½ years, and she has only told two other people about her diagnosis, her brother Ken, who also has Alzheimer’s, and her best friend Ellen.

Except for the first few months after the diagnosis, she has not talked with me to any extent about it. At first, we had conversations that involved how we felt and how we wanted to respond to it. For several years, she made passing reference to it. I don’t think I have heard her say anything about it for more than a year or two. I seriously wonder if she recalls that she has AD. My natural inclination is to talk about how she is feeling. I can only infer from her behavior. I’m able to tell when she is up and when she is down. I’m glad to say that she has many more “ups.” That is especially true during the past couple of years. In the early stages, she experienced frustration which prompted her low moments. It appears that she no longer associates her behavior with AD. Thus, there is no frustration that I can detect.

Kate’s choice has been to simply live her life as normally as she is able. That may have turned out to be a good thing. She hasn’t let AD dominate her life. That is definitely the case at this stage of her disease. We still enjoy life and each other. She’s happy. That makes me happy.

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At Home to Replace the Sitter

Today was my day to donate platelets at the Red Cross. When I got home, the first thing the sitter said was, “She is so smart.” I said, “I know she is.” Then Mary explained why she said that. She told me that she was watching a TV show with a judge in a courtyard scene when Kate said, “That’s not right. It’s . . .” My Kate, always the English teacher, had corrected the grammar used by someone on the show. Mary added, “And she wasn’t even watching the show. She just heard it.” I told her our grandchildren could tell their own stories of being corrected by Nan. Then she said, “Last week, she corrected me.” I didn’t tell her I have been corrected quite a few times over the years. I love knowing that she is still able to detect errors in grammar.

After Mary left, I walked over to Kate. She said, “I’m so glad to see you.” I said, “I’m glad to see you.” Then she added, “I really mean it. I feel so much better when you are here.” When I had walked in the room, it sounded like the two of them were getting along fine. I said, “But you like Mary, don’t you?” She told me she did, but “it isn’t the same.” I gave her a hug, and she said, “I really mean it.” One of the many things for which I am grateful is that Kate is so loving and appreciative. That strengthens my desire to be the best caregiver I can be. She makes it easy.

After that, she said she wanted to brush her teeth before leaving. As usual, she didn’t even ask about going out, she just assumes when I return we will leave together. So far that is what we have done every time I have come home after the sitter has been with her, never because I initiated it.

In a few minutes, I heard her call me from the back of the house. When I reached her, she said, “Where are we staying tonight?” I told her we were going to stay “right here in our own home.” She said she thought so. I walked back toward the kitchen and heard her call again. This time she pointed to a tube of toothpaste and her toothbrush and asked (using hand signals) if she should bring them with her. I told her I thought we could leave those at home. She said, “I thought so.”

When we got in the car, she asked, “Where are we right now?” I told her we were at our house in Knoxville.” Once again, she said, “I thought so.” She may have, but I know that today she has asked that quite a few times. Obviously, she is not sure. As I have said before, she doesn’t show any signs of frustration when she asks. She seems to be adapting well. Something else to be grateful for.