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From Fear to Joy in 60 Minutes

At 9:45 this morning, I saw on the video cam that Kate was awake and went to the bedroom. When I got to her, I discovered that she was scared. It turned out that she had been awake for a while and wondered where I was. She never called for me, or I would have gone to her right away. I also did not detect any movement that would suggest she was at all worried. When I apologized, she said, “Don’t ever do that again.” I told her I wanted her to know that I would never leave her alone and that I wanted her to call me if it happened again. She said, “I didn’t know where you were or where I was or what was happening.” Her memory of this fearful experience lasted a much longer time that I would have imagined. After she was dressed and taking her meds before leaving the house, she mentioned this again. This would have been about thirty minutes later. She said very sweetly, “I know you didn’t mean it, but don’t ever do that again – whatever your name is.”

Before leaving she saw a piece of ceramic tile that one of our grandsons had painted as a marker for our dog Chico’s ashes. We used to keep in a flower bed in our back yard where we had scattered his ashes. She didn’t know what it was, but she thought it was pretty and asked me if she could take it with her in the car. Of course, I said she could. We had enough time to stop by Panera for a muffin before an 11:20 appointment with her ophthalmologist . She asked if it would be all right to take it in the restaurant. I told her that would be fine. We put it on our table.

At Panera we had one of those nice conversations that occur periodically. She was in a very good humor and talkative. We talked about our lives and how fortunate we have been. She again showed how perceptive she can be when she said, “If you are with someone you like, it doesn’t matter where you are.” I agreed. After all, this was one of those moments that are special. We were just at Panera having a blueberry muffin, but it is the kind of moment I will treasure in the days ahead. How grateful I am that this is possible so late in her journey.

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Success With the New Sitter

Last week I was very disappointed to learn that we were losing our Monday sitter. She had been my favorite. A couple of weeks ago, we had a new sitter, Cindy, when I had a luncheon to attend. She had an easy job since Kate was still in bed when I got home. She had been asleep the entire time I was gone. I did introduce her to Cindy before I left, but they had no chance to get acquainted.

Cindy got the assignment to sit with Kate yesterday while I went to Rotary and a United Way meeting. I was comfortable having her but was a little uneasy as I wondered how Kate might respond to someone she didn’t know. I decided it would be best to wake her early enough to get her dressed and ready for lunch. Then the two of them could go to lunch at Panera. That would give them a little time to get acquainted.

I didn’t say anything to Kate about my leaving or Cindy’s coming. I waited until she arrived. I met her at the door and walked her to the kitchen where Kate was taking her morning meds. I introduced Cindy to Kate and told Kate that Cindy had come by to see her a couple of weeks ago, but she was asleep. I went on to say that she was back and that they could go to lunch together. Kate received her just the way I would have wanted. She was happy that they could go to lunch.

Then I told her I was going. She said, “Why don’t you eat lunch with us?” I told her it was my day for Rotary. She gave me a slight frown and then turned to Cindy and said something like, “Well, we’ll just have good time ourselves.”

Before leaving, I set up the TV to watch YouTube videos of the Tabernacle Choir. When I returned home, they were watching intently. This is one of the few times that I have used the video cam to check on things while I was away. I checked between Rotary and my United Way meeting. They had apparently just gotten back from Panera and were starting the video. I checked again after my UW meeting. They were still watching.

When I got home they were both sitting in front of the TV. They had been well-entertained by the music, and I was feeling great that it had been a successful first visit with this sitter. Today I will confirm with the agency that she is to be our regular Monday sitter.

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A Special Moment Last Night

Before going to bed last night, I put on several YouTube videos. One of them was Andrea Bocelli singing “The Lord’s Prayer.” Kate was immediately engaged and put down her iPad to listen. The next one that came up was Alfie Boe singing “Bring Him Home.” The YouTube algorhythm must have selected it because it is a prayer from Les Misérables. I was seated in the chair by my side of the bed while she sat in a chair on the other side. I looked over at her and saw that she had closed her eyes and put her hands together in front of her in a praying position. She was fairly still, but I could see some physical responses in rhythm with the music. She was hanging on every word he was singing. She loves the highest note on the final word when he ends with the plea “Bring Him Home” (as does everybody else).  Before he got the word out, she was already mouthing it silently. She, too, was praying. I was touched. Music is bringing her so many special moments.

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The Day Kate Was Diagnosed With Alzheimer’s

Today is a day that is hard for me to forget. It was eight years ago that Kate was diagnosed with Alzheimer’s. I just finished a quick look at the posts I made during the first ten days after that. (http://livingwithalzheimers.com/the-diagnosis-and-following-ten-days/) At that time we were experiencing all the emotions that surround such news. Kate was initially relieved but very quickly became scared and also angry.  Fortunately, neither of the latter two emotions was long-lasting. Although we were not surprised with the doctor’s news, the reality shook us. We had to sort through those emotions and figure out how to move forward.

At that time the future seemed very blurry. We were simply trying to grasp the diagnosis. We experienced a lot of feelings. We talked about the diagnosis and our future and tried to understand its implications. We couldn’t escape thinking about all the negatives that go along with the disease.

One of the things that struck me was how quickly we went into planning mode. We have been there ever since. That’s not because our plans were wrong. It’s because the situation is always changing and requires answers to new questions or problems. Our initial plans focused on two general areas. First, we needed to address legal and financial issues. That meant meeting with our attorney, accountant, and insurance man. Second, we wanted a plan for our lives in order to take advantage of whatever quality time we had. Somewhere along the way we will probably discover things we overlooked, but that foundation has served us well so far. I thought we would have far less time for living than we have. I never expected that we would be getting along so well after eight years. That is largely because I didn’t understand how much pleasure we could have after Kate’s memory was almost gone.

As we thought about the things we wanted to do, we gravitated to the things we already enjoyed. That included music, theater, travel, and time with family and friends. Each of these has played a significant role in our “therapy.” What is even better is that we are still able to enjoy most of the things that have led to a very happy marriage.

Looking back, I am glad that we responded actively and not passively. At this moment in 2019, I realize how much life we can enjoy while “Living with Alzheimer’s.” I still don’t know how long our good times will last. I know that the time is diminishing rapidly now. We stopped all major travel in January 2016. We made what may have been our last trips to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas. Movies are almost a thing of the past. I sense that non-musical theater and opera are on the way out. Music and social occasions like dining out play an even larger role in our lives now, but Kate’s sleeping late has cut down on our morning social engagement at Panera and our afternoons at Barnes & Noble. I plan to continue our day trips to visit friends as long as we are able. I don’t see anything that would stop that right now.

I can’t help feeling sad as I watch Kate change and imagine what lies ahead. I also recognize that our own experience with Alzheimer’s has been far better than that of most others. The past eight years are among the best of our marriage. I am grateful for that. I also feel a strong sense of determination to see that we make the best of the future no matter what it may bring.

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A Day of Contrasts

At 9:25 yesterday, I walked down the hallway to get Kate’s clothes when I heard her say, “Hey.” Before I could respond, she said it again. I hear this a lot now. It can mean different things. Often it means she wants something. Sometimes she is just trying to find out where I am. Yesterday morning, she was just letting me know she was awake and, perhaps, that she needed clothes. When I got to the bedroom, I found that she was still in bed, awake but not ready to get up.

It was a morning when she wasn’t in a particularly good mood. She acted as though I had said something that annoyed her. A little later, I asked her if I had said something that bothered her. She said, “No, but you probably will.”

Nothing that Kate said or did indicated that she was happy to see me. I chose to ignore this and simply help her get ready for the day. From past experience, I have learned that she won’t maintain that mood for long. I don’t know what precipitates these moods. I believe that her feelings may be a result of my control over so much of her life. I know that she doesn’t always like that. I also know that I often have to work to get her up or to get ready to go places. It could be that when she sees me come to her bedside in the morning, she naturally thinks that means trouble.

It turned out that I made the right choice to avoid a discussion with her and to help her getting up. I helped her dress, got her medicine for her, got her cup and iPad to take to Panera, got her jacket, and helped her into the car. The results weren’t immediate but did occur rather quickly. My own analysis of the situation is that focusing on the every-morning tasks provides Kate with an opportunity to experience some of the things I can help with and for which she recognizes she needs help. When that happens, she is more appreciative. In the meantime, she forgets that she was irritated, and life goes back to normal.

Because she was up early and did not shower, we got to Panera in time for her to have a muffin and enjoy time to work on her iPad before going to lunch. By the time we got there (a 4-minute drive from our house), her mood was vastly different. She was back to normal. As we started to walk across the parking lot to the door of the restaurant, she automatically reached for and grasped my hand. At that point, I felt sorry for her. Not too long before that, she had expressed irritation with me. Now she needed me for security.

We faced a more dramatic expression of her dependence on me when I was about to leave for the Y after the sitter arrived yesterday. When we got home from lunch, she said she wanted to relax in the family room. She picked up a 3-ring binder of family information and photos I had made for her several months ago. It has the names of parents and grandparents as well as information about us, our marriage, and our children. She hadn’t taken much interest in it until yesterday. I am sure she didn’t even recognize what it was when she picked it up and sat down on the sofa. Even though I used a very large font, it is hard for her to read. As she looked down one of the pages, she said, “Hey, here’s your name.” I walked over so that she could show me. I stood beside her as she looked at the information on that page, and I read it for her. She was quite interested.

About that time, Mary arrived. After greeting her, Kate asked her to sit on the sofa with her to look along with her. Then I told them I would be leaving for the Y. When I said that, Kate got a very sad look on her face and said, “You’re leaving? Can’t you stay with us?” It was a radical contrast with her enthusiasm for the information she was looking at. I suggested that Mary could read it to her. She said, “But this is something you would enjoy too.” It may be my imagination, but I think she looked even sadder when she said, “Why can’t you stay? I want you to.”

As with so many things that happen, I had to make a snap decision. I knew it wouldn’t be long before we could read the entire book. I stayed, and I am glad I did. Kate and Mary sat side by side on the sofa while I stood behind them looking at the book over their shoulders. I had written the book in a bullet-point style to make it easier for Kate to read. Because I was with them as they went through it, I could elaborate on much of the information. Kate loved it. It was just like the pleasure of a young child as her parent reads a favorite children’s book to her.

When we finished, I could tell it was a moment when I could make an easy exit. When I said I was going to the Y, Kate didn’t make any effort to stop me. She was happy, and I was on my way.

One other thing happened after dinner that I thought was both interesting and informative. We had walked to the car after leaving the restaurant. I have been helping Kate with her seat belt recently because she has had more trouble getting buckled up. When I started to help her last night, she stopped me and said, “I can do that.” That led to a very brief conversation. I said, “I’m sorry. I know that I sometimes try to do too much for you.” She said, “Yes, you do, but I know you’re just trying to help.” I said, “I will try to do better.” Then she said something that surprised me. “No, don’t change. It’s better if you do too much than if you do too little.” What surprised me was that her instruction to me involved a higher level of rational thinking than I believed possible at this point. This was not simply an expression of a feeling of need arising from her intuitive ability. It did involve that, but she had to put that together with another thought, that if I did less, she might need help when I didn’t provide it. This may be a little thing, but I was glad to see that she put these together and expressed it so clearly. As she sometimes says (though not in a long time), “Don’t count me out yet.”

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A Nice Day with Touching Moment at the End

Like most of our days, we had a variety of experiences yesterday. Kate woke up on her own at 10:00 which worked well since I had a 1:00 appointment to have my car serviced and wanted to eat lunch prior to that. As usual, she was slow to be ready for much conversation, but she appeared to recognize me and smiled when I first saw her.

As we drove away from the house, she said something that surprised me. I don’t remember what it was, but Kate thinks I underestimate her abilities and expressed it to me. That led to her saying, “Men are like that. Women could probably do a lot of things better than a man.” I said very playfully (at least I intended it to be playful), “But I’ve been a “womenslibber” for a long time. She laughed and said (very skeptically), “Are you kidding?” I decided not to extend the conversation any longer and let it die. This kind of talk has never been part of our ordinary conversation until very recently. I don’t know what prompted it, but she has brought up the topic on a number of occasions in the past few weeks.

It was one of those days when she was especially concerned about “where we are.” I repeatedly told her during lunch, and she worked hard to remember. She just couldn’t. During lunch, she asked me to tell her about her parents. I mentioned both their names, and she immediately picked up on her mother’s qualities. It intrigues me that she focuses so much more on her mother than her father. She has always loved both of them. When we talk about her father, she always speaks affectionately about him. On the other hand, her mother receives the lion’s share of her comments. I believe that relates to the fact her father died almost twenty-nine years ago, and it has only been thirteen years since her mother passed. In addition, her mother lived with us the last five and a half years of her life.

We had appointments for haircuts in the afternoon, and I discovered a new issue that we are facing. A couple of weeks ago Kate’s brother’s wife, Virginia, mentioned that pulling one’s hair is something that is common among people (women?) with dementia. I think she was responding to some of my posts in which I said that Kate has acquired a habit of running her fingers through her hair. She starts near her skull and pulls a few strands of hair upward. Virginia said that this can lead to infections of the scalp and that I might ask the hairdresser to watch for this. Today was my first time to ask her to be attentive to this. I had forgotten to do so; however, as we were about to leave, she approached me and said that she had seen some places on her scalp that show a bit of irritation. She, too, had seen this kind of thing before. The big question is “what can we do about it?” My first step was simply to tell her that the hairdresser had noticed the irritation and suggested that she not run her hands through her hair as she had been doing. She was very responsive; however, it’s impossible for her to remember. It was not long before she got into bed and began again. I reminded her, and she stopped. I am sure that she will not remember. We may have a problem on our hands.

I had just finished paying the check after dinner when Kate said something about our relationship. It wasn’t long after that when she looked at me and said something about the possibility of our getting married. She could tell by looking at me that I didn’t know exactly what to say and responded before I could answer. She said, “It’s just something we could think about.” I said, “I love you and have good news for you. We are married.” She said, “We are?” I said, “Yes. We’ve been married for 55 years, and they have all been good years.” As I said this, I feared that by telling her the truth might cause a different kind of reaction. She might have taken that as a sign that “something” is seriously wrong with her. (On several occasions, she has been concerned about that and no longer remembers that she has Alzheimer’s.) Instead, she was happy, and her eyes filled with tears. We sat there for a few minutes holding hands across the table. This is the second time she has suggested our getting married. In both situations I have been touched by this tender expression of her feelings and was glad she was happy when she learned that we really are married.

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Happy Birthday, Kate.

As a caregiver, I often hear expressions of concern about how I am getting along as well as compliments about my care for Kate. I appreciate that, but I sometimes feel Kate deserves more attention than I do. As I attempt to describe in this blog, this is a journey we are making together just as we have dealt with other challenges during our marriage.

Today is her 78th birthday, and I am thinking about the way she has approached her diagnosis. She accepted it with courage and a positive outlook. I would have been more public if I had been in her shoes, but I respect her decision to be more private. She has never wanted people to feel sorry for her or to treat her any differently than they had done before receiving her diagnosis. To this day, she has told only one person. That’s Ellen Seacrest, her closest friend whom we visited in Nashville on Saturday. I honored her choice for several years, but we were making changes in our lives that I ultimately felt required an explanation to our family and friends.

Consistent with her desire for privacy, she wanted to maintain her independence. I have tried to respect that but confess that I’ve not always succeeded. Over time, she has grown much more dependent. Even now, she prefers to do things on her own, but Alzheimer’s has forced her to acknowledge that she needs help.

She has always been even-tempered. Alzheimer’s has made that more difficult for her. Overall, however, she has been very easy to care for. That is especially true because she is so generous in her expressions of appreciation. It is much easier to care for someone who is grateful. On those occasions when she has been abrupt with me, she has often apologized. She is genuinely kind-hearted. That’s not just the way she treats me. It’s the way she responds to strangers we meet in our day-to-day experiences. I can’t tell you the number of times she has thanked bus boys and other cleaning staff in the restaurants we visit. She also gives warm greetings to other customers. That warmth also extends to her sitters whose names she still can’t remember.

Kate’s sense of gratitude goes far beyond the things that I may do for her. She often talks about how fortunate she has been in her personal life and we have been in our married life. I agree strongly with both of these things, but I am inspired by her recognition of how well life has gone for her. She never mentions the dramatic impact that Alzheimer’s has made on her life. By now, of course, she no longer remembers that she has Alzheimer’s. She has experienced frustration, but her diagnosis has never lessened her feelings of gratitude. She never feels sorry for herself. She views health issues and death as natural events to be dealt with to the best of her ability. It may surprise some people to know that we have found the past eight years since her diagnosis to be among the most fulfilling of our 55-year marriage.

Kate and I share a number of things in common. That’s one of the reasons we have gotten along so well pre- and post-Alzheimer’s. Among those things we have in common is a sense of gratitude. Above all, I am grateful we met and quickly sensed a connection that would be permanent. So on this birthday I want to go on record by saying how much I admire her, especially for the way in which she has handled “Living with Alzheimer’s.” In my book she’s a champ.

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A Lesson for Alzheimer’s Awareness Month

One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.

This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.

So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.

Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.

Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.

I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.

We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.

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Another Example of Kate’s Intuitive Abilities

I’ve written two posts in the last few days that deal with Kate’s intuitive abilities. This is another one. Last night she had an emotional experience that illustrates how powerful those abilities can be. This was far from the first such experience, but it was especially intense and lasted over a twenty to thirty-minute period of time.

It occurred after we returned home from dinner. About two weeks ago, she and one of her sitters had watched the first half of Les Miserables. It had been a while since the two of us had watched it, so I turned on the second half. As on other occasions, she quickly became engrossed. Periodically, I noticed that she was whimpering a bit as she watched. She was also making audible expressions of her pleasure.

Close to the last third of the performance, I brought her meds to her. Then I started to refill the pill holder in the bathroom. I was just about finished when she called my name. It was obvious that she was moved by what she was watching. When I responded, she asked if I could come to her. I went over to her and got down on one knee beside her chair. I asked what I could do for her. She said she just wanted me to be with her. Then she took my hand. I said, “It’s beautiful. Isn’t it?” She said, “Beautiful and sad.” She talked off and on for the remaining portion of the performance.

She thought it was so sad that we have wars. She explained that she believed there are times when war becomes necessary but it is so horrible that so many people have to suffer. She has always been moved by WWII and specifically the Holocaust. She said she couldn’t understand why so many Jews had been killed during the war. She repeated her thoughts for at least the next twenty minutes.

As I mentioned in one of my earlier posts, I felt this was a time for comfort as opposed to words. I listened and held her hand and supported her feelings. That continued until the end of the musical. We went to bed shortly afterward.

This experience makes me think about many of the movies we have enjoyed over the past several years. I don’t believe she has been able to follow a plot or understand much of what is going on for at least four or five years; however, that hasn’t prevented her from enjoying movies. For a long time, I wondered how that can be. Then I began to understand that the characters and situations must have communicated some emotional message that she liked. That was illustrated most vividly in several of the movies she has enjoyed during the past year. One was Darkest Hour. In that case, she did understand that it dealt with Churchill and WWII. She was able to connect with the seriousness of the events portrayed as well as the drama conveyed by the acting, visuals, and sound. The other two were documentaries, RBG and Won’t You Be My Neighbor? Even without following the story, she was able to get a feeling for both Justice Ginsberg and Mr. Rogers. She easily understood that the films conveyed positive impressions of each one and liked them.

One of the things I have learned since Kate’s diagnosis is that most people think of the last stages when they hear of someone with Alzheimer’s. They don’t imagine that stage is just the tip of the iceberg. We’ll be there sooner than I would like. In the meantime, I will continue to celebrate the fact that there are so many things that she can enjoy. Her intuitive abilities are still working even as her rational ones disappear.

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Addendum for Previous Post

In my previous post I neglected to mention something else that illustrates Kate’s appreciation of things she sees as beautiful. At dinner last night our server brought out a dish with a small cup of Parmesan cheese and another of hot peppers. Underneath them was a paper doily that looked like something my grandmother used to crochet with an outer band of lace. On at least two other occasions, Kate has brought them home. Last night she did so again. She held it in her hand very carefully, trying not to damage it in anyway. Before getting out of the car, she asked me to take it. She said that I was likely to be more careful with it than she. I thought this was interesting in two ways. First, it expressed how much she liked something so simple. Second, she sensed a difference in the way each of us handles our things. She didn’t want it messed up. She trusted my OCD tendencies to protect it.

It also reminds me of how kind she can be in her evaluations. There are many simple things that she appreciates that she might not have before her Alzheimer’s. She is very generous in her own critiques of theatrical and musical performances. She is the same with her attribution of skills of the people she meets. I notice this a lot when I do something simple and very ordinary. She will say something like “You’re so smart.” She does the same thing with many of the people we encounter daily. I think this is a natural outgrowth of her own loss of rational abilities. She still retains an appreciation of such skills and is impressed with the people who still have them.

Seeing beauty in things we take for granted and special skills that we would also overlook gives her more things in life to enjoy than the average person. That’s something else that the longevity of intuitive skills provides to make life enjoyable. How grateful I am for that. That has made living with Alzheimer’s easier for both of us.