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Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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This time I got the right answer.

You may recall that I recently mentioned we had had a strange experience at dinner last Saturday night. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.”

At Panera yesterday, she asked the same question. This time it wasn’t in the context of something I was saying. We had both been silent when she said, “You know what I’m thinking?” This time I took a moment to carefully consider my answer. Then I said, “That you’re glad we got married.” She smiled and said, “That’s it.” I said, “Me too.”

I felt like I had scored a victory. She often says that she is glad she married me. That is why I guessed correctly this time. I think I missed it the previous time because it followed something I had told her. The context in which she asks her questions is often relevant to understanding what she is thinking. If I can’t figure out what she wants, she doesn’t help me. She just gives up. I wish I always said the right thing. I guess that is too much  to ask for.

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Another Good Day

It really makes me happy to say we had another good day yesterday. First, Kate was up in just as good a mood as she did the day before. She was alert and cheerful from the beginning to the end of the day. She was also up a little earlier. I liked that because it gave us more time together.

She always enjoys watching children wherever we go. That is another pleasure deriving from her intuitive abilities. There are limits, however. She loves watching them play and explore their surroundings. She is taken with the things they say, especially when they express they wants to their parents. She was enjoying one little boy who wanted to run around. The mother tried to restrain him. That was cute until the boy screamed. Kate finds screams or any sudden noise startling and offensive. When the boy screamed, she jerked in her chair and said, “Now that’s not cute.”

We had lunch at the Bluefish Grill. It is almost 25 minutes away from where we live. On the drive, I always play music that I think she will enjoy. Yesterday I played selected songs from Les Miserables. Once again, she loved it. I played another album on the way back. She loved it as well.

We spent almost two hours at home after lunch. Kate went through an old photo book of her family. Then she worked jigsaw puzzles on her iPad. Of course, I had music that we both enjoy playing all the time. It was a pleasant time. Then she was ready to leave the house. We don’t often stay here for more than a couple of hours. There was still a good while before dinner, so I took her to Marble Slab for ice cream. We had stopped there earlier in the week. It is next to Panera, and we love ice cream. It’s surprising that we hadn’t been there in almost three years. I don’t intend to wait so long again. Then we went to Barnes & Noble where we remained until dinner.

We had a strange at dinner. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.” We went on with our conversation and had a good time.

She was unusually talkative last night. She talked mostly about us and our marriage, how happy we had been, how well-matched we are. That continued after we got home. She talked about how comfortable she felt with me and how much she liked being with me no matter what we are doing. I told her I felt exactly the same way about her.

I am happy to hear her talking and being so expressive. At the same time, I keep wondering about what is motivating her right now. I sense that she feels her world is getting smaller. She remembers fewer things, and that increases the value of the things she does know and can appreciate. That leads to the conclusion of our day.

We had started watching a DVD of Sound of Music the previous night. We had only watched about forty-five minutes of it before she was sleepy. We watched another hour of it last night. She loved Julie Andrews and talked about her looks, smile, and singing but couldn’t remember her name. She repeatedly asked me her name. I reminded her of the time she was at the Jeu de Paume and saw Julie with her daughter. She had no memory at all.

She loved the scenery in the movie as well as the acting. She was talking during the movie. At one point, she said, “I know this is silly, but I feel like God sent you to me.” I said, “I know what you mean. I feel the same way about you.”

A few minutes later, she said, “You know, you give me energy.” It didn’t last though. She was sleepy. We decided to stop the movie right there and pick it up tonight. She had had a good day. So had I.

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Enjoying Special Moments and the Power of Music

Yesterday afternoon, I was reading an author’s essay describing why she had written a book after losing her mother to Alzheimer’s. She said that she wanted to lead others toward happiness that one often misses because of the sadness that is also a part of the journey. She felt she had let that sadness prevent her from fully appreciating the “happy moments.”

Her words made me think of another experience Kate and I had with music a little bit earlier. We returned home from lunch. We sat down in the family room, and I put on an album of the last half of Les Miserables. Since we had seen the DVD and listened to the audio over the past few days, I intended to select one or two songs that I knew were among Kate’s favorites. Once it started, I saw that she was taken by it and just let it play through to the end. Initially, she was working jigsaw puzzles on her iPad. Then she became more engaged in the music, and put the iPad down. I could see that she was moved. She said, “It’s so beautiful.” I agreed. Before the end of the finale, tears welled up in her eyes. She got up from her chair and walked over to sit beside me on the sofa. She was crying, not out of any sadness. She was solely moved by the beauty of the music. I put my arm around her. She put her head on my shoulder. We savored the last notes.

We sat quietly for a moment. I decided to put on another album I thought she would like. One by John Rutter. We continued to sit there another fifteen minutes enjoying the music. As I have said before, we have both enjoyed music together since our first date, but I believe the pleasure she derives from music has increased substantially. I am glad that we continue to enjoy happy moments like this. They have been able to override the sadness that I sometimes feel.

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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.