Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.

Adapting to Change

Kate has made many changes since her diagnosis past 8 ½ years ago. They are happening more rapidly now, and they are the kind of changes that alter our social activity. Some of them are more difficult for me to accept than others. One of those is forgetting who I am. The first time I was aware of this change was a year and a half ago. At that time, I wrote about it in a post on February 22, 2018. I am copying a portion of that below.

Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that. . . I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

I wasn’t ready for that. Since that time, I have often reported on conversations similar to the one above. It has been obvious that forgetting my name and that I am her husband has become more common than in early 2018; however, my present emotional response is no longer the same as it was then. That may sound surprising to some who have not gone through this experience, but caregivers are always adapting to the changes experienced by their loved ones. Forgetting a spouse’s name and relationship is just one more.

When I first notice new things that Kate is doing or not doing, it becomes a new reminder of what lies ahead. Her recent difficulty working jigsaw puzzles on the iPad is a good example. That’s a big one because that has been her primary activity for the past two or three years. Her increasing dependence on me is another. With the passage of time, however, I become more accustomed the changes. I keep adapting to a new reality.

I am aided by the knowledge that she needs me. We have given ourselves to each other for over fifty-six years, but we have never experienced anything comparable to the way in which Alzheimer’s has taken away her ability to survive on her own. That brings about an overwhelming drive to make her as happy, safe, and comfortable as I can. That emotion tends to override any sadness that accompanies her changes.

In addition, Kate and I still enjoy life and each other even in moments when she doesn’t remember me. Yesterday she had an extended time during which she thought I was a friend, not her husband. That would have been shocking two years ago but is becoming more natural for me now.

It started when I got home to relieve the sitter. She had been resting on the sofa in the family room. There was something about the way she greeted me that made me think that she didn’t realize that I was her husband. When we talked after Cindy left, it became clear that my suspicions were correct. She didn’t ask who I was; therefore, I didn’t tell her my name or our relationship. She recognized me a someone she knows and was very comfortable with me. We enjoyed ourselves during dinner, but she didn’t say anything that made me think that she of me as anything but a good friend.

When we got home, I played YouTube videos of Pavarotti and The Three Tenors as well as Jonas Kaufmann. We both enjoyed the music. It was a nice way to end the day. Yet it still appeared she didn’t know me as her husband. That was confirmed when I got into bed. She was still awake, and I moved close to her. We talked about having a nice day. She was very comfortable. I couldn’t resist testing her and made a not-so-subtle comment about our being married. She laughed. I said, “You don’t think we are married?” Very confidently, she said, “No.” Thus we went to sleep without her ever knowing or acknowledging that we are married. That is the longest period of time she has not recognized our relationship. I had my arm around her for a short time after we got in bed. I released my arm when I turned onto my back. Then she grasped my hand and gave it a squeeze. I felt happy just to know that she still thinks we have a special relationship. I would have been very unhappy with that two years ago.

Confirmation of an Earlier Decision

Five weeks ago yesterday, I took a step I had been thinking about for months. I made an appointment to meet with the marketing director of Forest Hills, a local continuing care retirement community (CCRC). I met with him that very afternoon. I had been there on many occasions to visit friends. Several of those times our friends had invited us to be their guests for dinner in the main dining room. I have always liked the place and thought it could be a possibility for Kate and me at a later point in our lives. Her diagnosis in 2011 made me think more seriously, but I had never taken any steps to learn the details concerning the amenities and pricing.

My meeting filled in most of the things I wanted to know before going any further. I learned about a new building under construction that will be ready in the first quarter of 2021. All but three of the apartments were already taken. I liked what I saw and heard but told the director that I would like some time to think about it. He told me I could hold an apartment for thirty days with a small deposit. If I didn’t want to follow through at that point, they would refund my money. The following week I was comfortable enough to take that step. I met with them and handed over a check. This was getting real.

Two days from now the thirty-day period is over. I’ve had no reservations about the decision I made a month ago, so yesterday I took a bigger step. I made a down payment on the apartment I had selected. With that step, they consider us a part of the CCRC. They gave me a gift certificate for a few meals there and said we were welcome to eat there at any time. They will send us a monthly invoice for meal charges that go beyond the value of the certificate. I doubt that is something we will use, but I thought it was a nice gesture. We are also eligible to use the adult day care services (for a daily fee) should we desire. The services they can provide for Kate have been very important in my assessment of a move.

They also gave me a directory of the other people who will be living in the building. I reviewed the list. I know at least a dozen other couples and three singles. Some I know from church and others from Rotary. I feel sure there are others whom I don’t know but would recognize. That will be a good start for us. I am very comfortable with my decision.

The Most Predictable Time of the Day

I’m never quite sure what Kate will be like when she wakes up. Confusion is common. A number of times she has been very disturbed. Sometimes she appears perfectly normal. That is, she doesn’t appear confused until she asks, “Where are we?” Sometimes she seems wide awake and happy. Other times, she acts like I am about to interfere with her rest. She is usually right about that.

Mornings represent a striking contrast with our evenings. She almost always feels completely at ease. I can’t identify a precise time this happens. I know it starts much earlier in the day when we leave the house. That is true whether we leave at 9:30 or 10:00 for Panera or closer to noon for lunch.

In her second book, Dementia with Dignity, Judy Cornish devotes the major portion of her book to “mood” and its relevance for those who care for people with dementia. She talks about the ability of PWD to read their caregivers moods. Having learned the importance the senses of PWD, I don’t find that surprising. This ability has significant implications for relating to PWD. Caregivers face many things they cannot control. It’s frustrating. Controlling mood, however, is something that caregivers can, at least to some extent, control. Whatever the caregiver’s mood, the PWD can read that and is more likely mimic it. If the caregiver is uneasy, the PWD is likely to become uneasy as well.

In earlier posts, I have suggested that Kate becomes more relaxed throughout the day. I have attributed that to the accumulation of information that makes her feel comfortable. She may not be any better at remembering the names of people and places, but she senses a lot of things with which she is familiar from the past. Cornish’s views on mood are making me think more carefully about my role as a “manager” of them. I am more sensitive to the fact that I can play a role in making her more or less at ease.

When I think about it, I believe our everyday experiences tell us one person’s mood can affect someone else. I have often said in this blog that “When Kate is happy, I am happy.” That isn’t unique to the relationship of caregivers and PWD. That is true for spouses, for parents and their children, or even for one stranger encountering another.

There are at least two important differences, however, in the relationship of a caregiver and the PWD. First, the PWD has lost her rational ability to control her emotions or to work with someone else to do so. Second, the caregiver is the one who is “officially” in charge. If any changes are to be made, it is the caregiver’s responsibility to make them.

In relationships between spouses, we generally expect  both people to have sufficient rational ability to play a role in maintaining the appropriate moods (though we know that isn’t always the case). The same is true for strangers. It’s a bit different with parents and children. In this case, parents are in charge, and part of their responsibility is teaching their children learn rational ways to behave in social relationships. Children can learn. PWD can’t.

With these things in mind, I believe I have unconsciously assumed that management of Kate’s mood is part of my caregiving role. I wasn’t aware that my own mood might be making a difference in hers. Well, to be honest, I have felt that coming in to wake her in the morning has sometimes made her grumpy. That seems legitimate. If were sleeping soundly and didn’t see any reason to get up, I might be grumpy too. That is why I started waking her up so gently. I usually play music that I know she enjoys for 15-30 minutes before making an effort to rouse her. Even then, I wake her gently and allow plenty of time to avoid my rushing her.

Following this procedure seems to work, but not always. That is when I have to work harder not to push. I try to be very careful in the way I speak to her. I am as calm and relaxed as I can be. There are times when I say, “You don’t have to rush. You have plenty of time.” She sometimes doubts me and says somewhat gruffly, “Are you sure?” I continue to be calm, and her mood begins to change. It isn’t unusual for her to apologize for the way she spoke to me.

This isn’t always easy for a caregiver. For many, it’s very hard. That’s because our emotions often play such a key role in how we respond to things that irritate us. The role of a caregiver demands a greater emphasis on our rational skills than our roles in other relationships. We have to double our efforts. Our loved ones cannot do it. They have lost those skills.

Let’s go back to the fact that Kate’s mood is at its best in the evening. I believe creating that mood starts in the morning when she gets up. It’s no challenge at all if she wakes up in a good mood. There is little work to be done except to reinforce it throughout the day. If she is grumpy, however, it’s going to require a rational control of my responses in order to shift her mood. I am grateful she responds so easily. I love the reward of a good mood that peaks in the evening. It’s a great way to end the day.

Feeling Good About My Decision to Move

Tomorrow it will be two weeks since I made a deposit on an apartment in a local continuing care retirement community. That gives me another two weeks before I either have to back out and get my deposit back or move forward with a full down payment. At this point, I still feel good about my decision and doubt seriously that I will change my mind before the down payment is due.

For ten years, I taught a Sunday school class of seniors that were mostly ten or more years older than I. During that time quite a number contemplated such a move and found it a hard one to make. I understand that, but I have felt quite differently about it. When Kate was first diagnosed, I had my personal preferences regarding her care. I wanted to keep her at home, but I also felt I should keep all my options open. I have not changed that position. After all, there was, and still is, no way I could predict what our circumstances might be like in the years ahead.

Kate’s diagnosis changed a lot of my thinking. The first was that I immediately began to reinterpret everything she was doing. I finally understood her behavior was result of her Alzheimer’s. That made me significantly more understanding. It also placed her care at the center of my life. That doesn’t mean that I gave up doing all the things l like, but it did mean that everything I have considered doing since then has taken her care into account. Until the past six to eight months, I’ve been able to do that by focusing on things we can do together and engaging a sitter to give me twelve hours a week for myself. As she has declined, I’ve been increasingly concerned about what would happen to her if something happened to me. I don’t have any existing health issues, but Kate and I are at about the same as our parents when they began to show signs of diminished health.

Thus, my decision to explore a CCRC was heavily motivated by a desire to establish a plan for Kate should I experience a major health problem. I am happy to say that I immediately felt better when I put down a deposit. Even though the new building won’t be ready for almost two years, we will have access to other benefits of the community like the adult day care, assisted living, or memory care. In other words, my decision has opened up another set of options that were not previously in place.

But that isn’t the only reason I feel comfortable. For many years, Kate and I have felt we wanted to make life as easy as possible for our children as we age. I believe taking this step accomplishes just that. We had already taken some steps to make them aware of what they would need to know if one or both of us were to die. They have all of our financial, medical, and legal information as well as the contact information they would need. I feel that moving to a CCRC would be an added measure of security for us and for them.

There are several other things that were also relevant. I had already decided I didn’t want to remain in our house after Kate is gone. I don’t enjoy all the things that are required to care for a house and lawn. I can hear my friends saying, “Wait a minute, don’t you already have a housekeeper and people who take care of the yard?” That is true, but they don’t do everything that needs to be done. Besides, I still have to manage everything. I would rather have someone else do that for me even if it isn’t done exactly as I would like it or on my time table. My dad lived to be 100 and was active until his stroke at 96. I, too, want to be active. Having an apartment rather than a house will allow me to focus on other priorities.

I doubt that I would have made the decision if there had been an available apartment when I sought information. As it is, I have time to get ready. It gives me two years to close the home we have lived in for twenty-two years. The fact that the building is two years away also gives me plenty of time to reconsider my decision. I feel secure, but not locked in.

Making Plans

We face important decisions at every stage of our lives. It’s no surprise that seniors confront them as well. Some decisions are more significant than others. For example, when should I retire? What will I do after retirement? Sooner or later (we always hope the latter) we face things like giving up driving. That’s a big one. Few people want that. It’s a critical sign that we are giving up some of our independence.

An even bigger one is where we live as we age. It’s no secret that most of us want to continue living in our own homes. As our population ages, there is a growing effort to support seniors in their effort to accomplish just that. As with so many things, finances play a key role in such decisions. The combination of personal preference and finances accounts for the fact that most seniors do live in their own homes. At the same time, there are increasing options available for those who might feel the need to do otherwise.

I will turn 79 one month from today. That was the age of my parents when they talked with Kate and me about moving from West Palm Beach to Knoxville. We encouraged them, and they moved here in 1994. They lived in their own apartment. It worked out well for us and for them. I didn’t realize it at the time, but my mom was probably showing the early signs of dementia before then. Four years later, she was diagnosed here in Knoxville. I suspect their age and their health situations were strong motivators in their move. They loved South Florida and wouldn’t have wanted to leave otherwise.

At my age and with Kate’s Alzheimer’s, I find myself in a similar situation. For several years, I have thought about our options. Kate and I have lived in Knoxville for 48 years. We have invested our lives in this area. I find it difficult to think about moving away. On the other hand, Kate and I long ago agreed that we wanted to make life as easy for our children as possible with respect to their care for us. There is no way to relieve them of all responsibility, but there are ways to make it easier.

One of those would be to move closer to them. Right away that becomes a problem. Our daughter lives in Memphis, our son in Lubbock. If we move close to one, we are much farther from the other. Despite that, Kate has always wanted to go back to Texas, and our son is in the elder care business. He is a care manager who works with seniors and their children to meet the needs of both the parents and their children. He is familiar with all the senior resources that are available in the Lubbock area. If we were going anywhere, that sounds like a perfect option.

I’ve thought about this a long time and have mentioned it to both of our children, but I’ve never taken any steps to explore moving out of our current home. During the past six to eight months as Kate has declined, I have become increasingly concerned about what would happen to her if something unexpected happened to me. Could this be the same motivation that influenced my parents’ move?

For years, I have been reasonably familiar with Knoxville’s continuing care retirement communities (CCRCs) as well as the independent living, assisted living, and skilled nursing facilities (including memory care). I haven’t seriously considered any of them for Kate and me, but I have felt three of the CCRCs were possibilities for us should we ever have the desire or need.

Two or three months ago, I decided I should get more specific information about one of the CCRCs I believed was most suitable for us. Each week I meant to call but never got around to it. In the meantime, Kate’s condition has noticeably declined. Two weeks ago, I decided I needed to take action. I called for an appointment. Two days later, I spent almost three hours with the marketing director and one of his staff. They took me through all the details of their community and what it has to offer. Because I have visited several residents over the years, I was familiar with some things, but there were many things I didn’t know. One of those was about a new building that will be completed sometime during the first quarter of 2021. All but three of the apartments were pre-sold. Nothing was available among the existing buildings.

I took several days to think about it. Then I arranged another meeting with the intention of making a deposit on one of three apartments that were still on the market. I met with them again, got a little additional information, and wrote a check for the deposit. I have thirty days to make a final decision. If I decide to go ahead, I will have to put down a larger down payment. If I decide this is not for us, they will return the deposit. Until then, I plan to weigh all the benefits and potential downsides. My friend Mark Harrington once told me that when he is facing a choice like this he flips a coin to determine which way to go. Then he sleeps on it overnight before making a commitment. If he feels comfortable with the decision the next morning, he commits himself. If not, he looks to the other option. In a way, that is what I am doing with my decision. I’ll see how I feel at the end of thirty days.

Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.

Special Moments Yesterday

Not every moment of every day is special. Some are discouraging, sad, or trying. As I have noted many times, we have experienced relatively few of those. I find that we have enough uplifting moments to offset those I would like to forget. Some of those involve planned events like our regular dinners at Casa Bella for their music nights or our visits with family and friends. Many of them occur without any planning at all. They just happen without any prior expectation. That was the case yesterday.

It was a day for the sitter. This was only the second time that Valorie has been with us. She will now be our regular sitter on Mondays. I was especially eager to get Kate up a little earlier than usual. As time passed and Kate had not gotten up on her own, I began to think of a new plan for the sitter. I decided to let her sleep until 11:00. That would leave an hour for her to get showered and dressed before I left at noon. It would relieve me of the pressure of getting her up and dressed and to Panera for a sandwich before I left. I would simply let the sitter take her to lunch while I go to Rotary. Assuming it worked, it would be something we could do on a regular basis from now own.

At 11:00, I went into the bedroom and sat down on the bed next to Kate. She looked up at me and smiled. We began a fifteen-minute conversation that for me was as tender a conversation as we have ever had, and she didn’t even know my name.

RICHARD:               “You look relaxed.”

KATE:                       “I am.”

RICHARD:               “I’m glad.”

KATE:                       “Where am I?”

RICHARD:               “You’re in your very own bed in our house in Knoxville, Tennessee.”

KATE:                       “We have a house?”

From this point, we went through our usual conversation, at least in the words that were spoken. She wanted to know my name, her name, and her parents’ names. If you read these posts with any regularity, you can pretty easily grasp the content of the conversation. What was different about this one was the tone. She was very relaxed and sleepy. I responded in kind. It was much more like a father talking with his young child. She was trusting me as the person with the answers to her questions. I am touched by her growing dependence.The difference between this situation and with a child is that she can’t remember. A child can or will learn. That’s not going to happen with Kate.

Our conversation ended when she said she was sleepy and wanted to rest some more. I explained that I would be leaving and that Valorie would be with her. She didn’t remember Valorie, but I told her she was here last week and that she had liked her. I also explained that Valorie would be happy to help her with her shower and clothes if she needed help. She was comfortable with that, and I left her to rest. Equally important was the fact that I was comfortable. I let go of my desire to get her up, dressed, and to lunch. I accepted that this change needed to occur. It enabled me to have an easy conversation with Kate rather than pushing her to get up when she really wanted to stay in bed.

When Valorie arrived, I explained that Kate was still sleeping and talked with her about helping her get up and to the shower and dressing. I made it clear that this was the first time anyone else had helped with these things but that I thought Kate would be cooperative. When I arrived home, they were both in the family room. I walked Valorie to the door. She said she had helped Kate with the shower (not sure exactly how much help she had to provide) and getting dressed and that Kate accepted willingly. I was delighted. I have known we would face this step sometime and wondered how we might make a smooth transition. It turns out to have been easier than I expected. Of course, it may not be this way every time, but it’s a great start. Having the sitter assume this responsibility will ease my stress a good bit. I won’t have to worry about pushing her to get up.

After Valorie was gone, Kate and I sat side by side on the love seat in our family room and looked at one of the photo books of her family. This is one put together by her brother Ken and her cousin Sharon. It is the story of the Franklin Family Veil. One of Kate’s aunts bought the veil in Brussels in 1924 for her wedding. It has been worn by many brides in the family since that time. It contains a bit more narrative than some of the other photo books. I read to her, and she loved seeing the photos. I was touched again to share in that moment.

I try to make a point of moments like these because it is so easy to think her memory loss would prevent our experiencing such pleasures. It is true that there are things we did before that are no longer part of our lives, but much of that is offset by other things that she can appreciate. There will be a time when those will diminish as well. I’m not going to worry about those right now. I’d rather focus on these special moments that still come our way.

A Different Kind of Monday

So much of my attention is focused on Kate and the changes she experiences that I often overlook the fact that change us occurring for everyone on a daily basis. I think of that now because Kate hasn’t even stirred yet, and I know this Monday will be different for us. Last night, I received a phone call from the agency that provides the sitters for Kate. Marilyn, who was supposed to be here from noon to 4:00 is sick and will not be able to come. They were quite willing to send a new person, but I declined. I would rather change my plans for the day than bring in a sitter that Kate has never met. Actually, I am rather glad to have another day without a sitter.

Kate’s morning routine continues to be erratic. After thinking that she was settling into getting up late, she got up early several days in a row. The past few days she has gone back to sleeping late. Yesterday was another day when I had to get Kate up earlier than she wanted. Fortunately, she was very cooperative, but I felt bad about it. She has been very tired in the morning. I thought it might be good to let her sleep this morning but knew that the sitter comes at noon on Mondays, and I didn’t want her to wake up after I had left for Rotary. It’s not that I don’t think she could handle it. I just know that she often needs my help when she gets up. Of course, at some point, I will probably have a sitter to help in the morning. I don’t think either of us is ready to do that right now.

I often mention that Kate either sleeps late or surprises me by getting up early. She has experienced one other change in the past week or two. She doesn’t seem to go to sleep as quickly as she used to. There are some nights when she hasn’t gone to sleep as long as an hour or two after going to bed. I don’t ever recall that before. Of course, that could easily play a role in her needing to sleep in the morning. At dinner, she frequently tells me that she is going to “crash” early; however, she seems to get her second wind after we are home. When she was on Trazodone, she went to sleep rather quickly, but I don’t want to go back to that just yet. On the whole, I think she has been more alert since we discontinued it six or seven months ago. Her only groggy moments occur when she wakes up in the morning. Trazadone could exacerbate her confusion.

At any rate, I don’t plan to go to Rotary today. I also had a United Way meeting scheduled at 2:00. I will skip that as well. Kate and I usually have nice days together. I’ll take advantage of this change in the sitter’s schedule to enjoy the day with her.

I should add that yesterday was another good day. Since Kate got up late, we went directly to lunch. That gave us a brief time at home before going to see the musical Buddy at one of our local theaters. We had a good time. From there we went to dinner and then back home to relax the rest of the evening.