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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.

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A Thought on Caregiving

At lunch with the Greens the other day, Angela told me a story of how a friend who was a caregiver for his aunt dealt with a situation all caregivers for people with dementia (PWD) face, what to do when your loved one keeps asking the same question over and over. She said he made signs that he could hold up and show his aunt. I said, “That sounds like something done for the convenience of the caregiver and not the PWD.” She went on to explain that she had heard that having a visual helps the PWD to remember.

Having reflected on this a bit, this approach misses something important. From my perspective, one of my pleasures is being able to help Kate with something that she either can’t do or finds difficult or inconvenient to do. Every time she asks me someone’s name, where we are, or anything else she has forgotten, she gives me an opportunity to do something for her.

I believe one of my greatest privileges is to walk with Kate through these last chapters of her life. I intend to keep answering her questions and to do it happily. These are things she wants to know, and I am glad to tell her. It will be sad day when she no longer asks me questions.

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Our Fifty-fifth Anniversary

Kate and I married 55 years ago today. Like every young couple, we began with somewhat vague hopes and dreams. All we really knew was that we were in love. We could never have imagined all that lay ahead. The good news is our dreams have come true. I don’t mean in any specific way. What I mean is that our love is deeper now than every before and that are lives have not only been enriched by our experiences but by sharing them together.

Life is much different now. Kate hasn’t been able to remember birthdays or anniversaries for several years. I have talked about this anniversary several weeks. She has never been able to remember it. That sounds sad, and it is; however, neither of us is feeling sad this morning. Kate is living in the moment. As usual, she is happy with this moment. We’re on our way to Asheville where we have celebrated quite a few anniversaries. We’ll stay at the same hotel where we have stayed for the past 15 years or so. We’ll eat at the same restaurants. We’ll enjoy our time together. Kate won’t remember it, but I will. She has little or no memory, but she is still able to enjoy living through her senses. I am thankful for that. Most of all, however, even though she is forgetting my name, she still expresses her love for me as I do for her. Who would have thought that this far into Alzheimer’s life could be so rewarding. We are fortunate people.

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How long can she remember? Not long.

Somewhere I read that a person in the later stages of dementia can only remember something for 3 seconds. Based on my experience with Kate, that sounds about right. For example, at Panera this morning, she asked me to tell her my “real” name. I asked if she meant my first name. That was the one she wanted. After I told her, she wanted the middle and last names. I gave them to her and then repeated the first, middle, and last names. Then she said the three names. She started to repeat them again but could only get my first name. She tried again. She could get it, but it was difficult to get it right after saying it once. I’m just glad that she doesn’t appear to be overly concerned about it. I emphasize “overly” because she obviously is concerned or she wouldn’t keep asking my name, our childrens’ names, or the name of the city in which we live. She sometimes apologizes for asking again. I always tell her, “That’s why I’m here. You can ask me as many times as you want.”

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Good Times with Bitter Sweet Moments

Once again, I am happy to report that the balance of our day yesterday was as good as the start. After returning from lunch, Kate rested for a little over an hour. Then we went to a movie. This was a bit unusual in that it was a movie we had seen just last week, RBG. Kate hadn’t remembered it, but she had enjoyed it. Since we didn’t have any special Memorial Day plans, I decided to take her again. We liked it just as much the second time, and I appreciated the artistry with which the story was told even more than before.

As we were getting out of the car before the movie, she again asked my name, and I told her. She is so very natural when she asks me. She shows no sign of being bothered by having to ask nor does she seem to be concerned about hurting me. Other than the question itself, she doesn’t sound like we imagine a person with Alzheimer’s would sound just childlike.

While we were at lunch, I received two DVDs from Amazon. One was Fiddler on the Roof. The other was Les Miserables.  Last night we watched a portion of Fiddler. Although she was working puzzles on her iPad throughout the movie, she was following it and enjoying the music. I did as well. This is rather unusual since she hasn’t expressed much interest in TV programs or movies in a long time. It was a nice way to end the day.

Kate was already in bed as I pulled back the covers on my side to get in bed when she said, “Do I have a name?” I told her she did and went over to her side of the bed, sat down and told her. I said that she had a special name because it was a family name. That prompted her to say how much she loved all her aunts and uncles. She was in one of her talkative moods again. She started to talk about our relationship. She has a set of things she recites. She is glad we met and how fortunate that we have been. Last night she also talked about how comfortable she is when she is with me and how easy it is for her to say things to me.

I continue to interpret her behavior in light of what I have read in The Dementia Handbook. The loss of her memory is dramatically expressed in her failure to recall names and facts, but her senses are alive. Every few minutes as we watched Fiddler, she would say something about what a good movie it is and how much she liked the music. More importantly to me, she still has special feelings about our relationship and me. And, as she has said, “I can’t even remember your name.”