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Contrasting Social Situations and Kate’s Response

It seems that Kate’s current behavior is, in part, related to the situations in which she finds herself. Yesterday, she reacted very differently to two social situations. The first was lunch with our senior pastor. As I had done when we met my Twitter friend last weekend, I made sure that she was seated directly across the table from him. He was also good about including her in our conversation. Kate responded accordingly. He and I did most of the talking, but she was also an active participant. Both of us enjoyed our time together. I doubt that our pastor could see much difference in her since we had lunch together two to three months ago.

Last night was an altogether different experience. We went to Casa Bella for Broadway night. We sat at a table for ten, and the talking was louder than usual. Often when we arrive there is only one other couple with whom we sit each time. That enables her to establish a comfort level. Last night, we were the first ones there. Shortly after, the rest of the group arrived. I think this was overwhelming for Kate even though everyone was good about speaking to her.

While we were waiting for our server to bring our meal, Kate started looking around the room. She looked very concerned. She said, “Where did she go?” I said, “Who do you mean?” She said, “The woman who came with us.” I told her it was just the two of us, that nobody came with us. She didn’t seem convinced.

Until the food arrived fifteen minutes later, she was very uncomfortable. She said that she was looking for her food. I told her they were preparing it, and it would be coming soon. She continued to be very bothered and wanted me to speak with the server. At one point, she caught the eye of our server and motioned for her to come to her. Before she could ask about our meal, I told the server we were fine, and she walked away. Kate’s distress continued until the meal arrived. Then she devoted her attention to eating.

On a typical music night, Kate would have loved the music. She did respond well to two or three numbers but expressed little enthusiasm for the overall program. The singers were outstanding, but they sang a lot of Sondheim’s music. It was not as melodic as she likes. She was glad when we left.

The whole experience made me wonder what the future holds in terms of our attendance at these music nights. They have played an important part in our lives for the past six or seven years. Last night, she did not enjoy herself the way she has in the past. She seemed to be bordering on causing a scene because her food had not arrived when she thought it should. I’ll just have to play this by ear in the future. If we are going to continue sitting at a large table, I may experiment by getting a table for two. Crowds appear to be a growing problem.

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Update on Kate’s Changes

Although Kate did not experience any moments of discouragement or sadness, her memory and overall functional ability were no better yesterday. She was in a good mood when I went in to wake her. She smiled and responded to me as though she knew exactly who I am. I told her I loved her, and she said she loved me. As so often happens, she then said, “Who are you?” About forty minutes later we were ready to go to lunch. In the laundry room as we were headed to the car, she said, “I don’t know where I am or where I’ve been or where I’m going.” She said this without any sense of despair or anxiety, but she was perplexed.

We returned home just before the sitter arrived. Given her growing insecurity, I wondered how she would respond when I told her I was leaving for the Y and Mary would be staying with her. It turned out there was no problem. She showed no sign of insecurity at all. I was relieved. Then I wondered what I might encounter when I got home. That was not a problem either. She and Mary were talking when I arrived. Mary told me that Kate had wanted to talk. She said that Kate had told her about some group of which she was a part and that she was trying to decide whether to drop out or not. Kate didn’t seem to remember that at all. I couldn’t imagine what she was talking about either. Mary said goodbye and started to leave when Kate asked her to wait. She got up and walked over to Mary and said, “Let me give you a big hug.” I was very pleased. As I’ve said before, Kate has a kind heart.

At dinner she carefully placed her napkin on the table in front of her as if to use it as a placemat. It wasn’t long before she wanted a different arrangement of her knife and fork and the napkin. She tore the napkin into three pieces, using one part as a coaster for her iced tea, another for her knife and fork, and the third as a smaller placemat. Many times she asks me what to do with her napkin. She almost always gravitates to using it as a placemat. When she asks, I tell her it’s her napkin and that she can put it in her lap to wipe her hands when she needs it. That seems a difficult instruction for her to understand.

It was another day that she was tired and wanted to rest. We stayed in the family room only a short time before she wanted to go back to the bedroom. I brought her nightgown to her. She put it on right away got into bed. She planned to work on her iPad a while but forgot or changed her mind and called it a night. She is tired more often than she has been in the past.

In an email yesterday, my friend Tom Robinson read my post that Kate seemed to be on a more significant decline. He asked if it is possible this decline could be followed by a similar improvement. I told him that it is possible and explained that she regularly has moments when her symptoms are not as obvious as they have been recently. Today could be different than the past few days.

Having reflected on this, I think it is more complicated than any of us fully understands. Periodically over the past eight and a half years, she has exhibited changes in her behavior. I think one of the best examples is forgetting my name. The first time that happened, there was a tendency of me to conclude that she had completely forgotten and would never know it again. That was almost a year ago, and she still knows my name sometimes; however, she calls my name much less frequently now than she did then.

Kate’s behavior in recent days is different than I have seen in the past, but it is not surprising. She is exhibiting the kind of changes that accompany the latter stage(s) of Alzheimer’s. I don’t know that she will be this way today or tomorrow or the day after that, but I do know I will see more things like this in the future. I will continue to cherish the good times, but I will be sad at other times.

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A Day of Sad Moments

I’ve heard other caregivers talk about points on this journey in which their loved ones took a sudden downturn, but Kate’s decline has been very gradual until recently. During the past few weeks, I’ve noticed more changes that occur almost from one day to the next. Yesterday this pattern continued.

It started when I got her up for lunch. She was awake; she just didn’t want to get up. It took the better part of an hour get her to consent. When I walked her to the bathroom, she started shaking. In addition to holding my hand, she grabbed on to my arm with her other hand. She looked frightened just like she did the day before in Nashville. As I did then, I asked if she was afraid. She said she wasn’t. My best guess is that she didn’t know where she was and felt very insecure.

Once she was dressed, I decided to go to a place that is a little farther from home than we usually go. My purpose was to play music she likes in the car and let her begin to feel at ease. That worked, and we had a nice lunch. We had an especially friendly server and joked with him periodically throughout our meal.

When we got home, Kate asked what she could do. I gave the iPad to her and told her she could work her puzzles or look at her photo albums. She chose the iPad. That didn’t last long. She was very tired and asked if she could lie down on the sofa. I told her that would be fine. I let her rest for the next thirty minutes before getting her up for her hair appointment. Unlike the morning, she got up without a problem.

She seemed very needy as we drove away from the house. She said she liked me and liked being with me. She said something similar as we left the hair salon.

Back at the house, she started working puzzles. Very soon she was frustrated and asked me to help her. She looked depressed and was almost in tears. She had reached a point at which she didn’t know what to do. She wanted me to finish her puzzle for her. She asked me to work another. I explained what I was doing with every piece. Then I asked if she would like to work one. She did but wanted me to help her. We tried, but she seemed too tired to think. I said, “I love you and want you to know that I will always be with you.” She said, “I know that, and I need you.” She said she needed a break. I suggested we go to dinner. As she got up from her chair, she said, “You just tell me everything I should do.” This was a very sad moment. Once again, it reveals an awareness of her difficulties, and that is painful for both of us.

On the way, I played music that I knew she would like. That seemed to lift her spirits. We enjoyed our dinner. Near the end, however, she got very sad about the servers. She said she never had to work like that. That got her thinking more broadly about all the people who struggle to make ends meet. She said she grew up taking her life for granted. It is not unusual for her to express such feelings, but she doesn’t usually seem so depressed.

Typically when we arrive at home after dinner, Kate likes to sit in our family and work on the iPad. Last night, she said she was tired and wanted to go to the bedroom. I asked if she would like to watch our DVD of Les Miserables. I thought it would be a good idea because it is our favorite musical. I neglected to take into account the sadness it portrays. It wasn’t long before I could see that she was sad. I asked if she would like to watch something more upbeat. She did. I pulled up a series of segments from Andre Rieu concerts. In the meantime, she decided to go to bed. Fortunately, she sleeps well at night. It wasn’t a good night for me. I was awake at 1:00 and didn’t get back to sleep until after 3:00. I wonder what today will bring.

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Changing Times

Kate and I were in Nashville this past weekend to visit our friend, Ellen, who now lives in memory care. We stayed in a hotel overnight to have a leisurely morning and lunch before visiting her. For most of the day, Kate was not herself. She slept later than I expected or wanted. When I got her up, we had less than an hour before checking out and our reservations for lunch. I tried not to rush her, but she felt rushed nonetheless. Her response was different than usual. I am always concerned about her having a panic attack, something that hasn’t happened in several years. Instead, she seemed frightened and pulled herself away from me a couple of times as I helped her with her clothes. I asked if I had scared her, and she said no.

When we got to the restaurant, she was friendly with the people she met. That is not unusual, but the way she spoke to people outside and inside the restaurant sounded like someone who might have had a little too much to drink.

She got along well once we were seated at our table, but her eyesight caused a few problems. She didn’t recognize it was bread in the bread basket. I picked out a couple of pieces and put them on her bread plate along with some butter which was already soft. In a few minutes, she picked up the butter with her hand and put it in her mouth. Apparently, she thought it was a piece of bread. She didn’t care for it and put it down, but she had a glob of butter on her fingers. I tried to help her wipe her hands on her napkin. I first explained what I was I was going to do, but she was confused and didn’t understand. That shook her up for a minute or two.

We both went to the restroom before leaving. When she came out, she had a paper towel in her hand and dropped it on the floor of the hallway. She apparently didn’t see where to deposit it in the bathroom. As we left, she told everyone goodbye in much the same manner as she had done when we entered.

The big surprise of the day came after we had arrived at Ellen’s memory care facility. We sat down with her in the activities room which was vacant at the time. This time we found that we could understand even less of what Ellen said than the last time. Very quickly Kate played a role that was very different than on our other visits. She took the role of caregiver. Ellen was the one she was caring for. She spoke to her as though Ellen were a child, and she was her caregiver. The tone of her voice was very much like that of an adult talking to a small child. She held Ellen’s hand and discovered that it was cold. She proceeded to explain how Ellen could rub her hands together to warm them up. It was much more of a leadership role than she would normally take. Although Ellen has great difficulty speaking, she seems to understand us quite well. She looked a little puzzled and almost laughed a few times as Kate took charge.

We tried to converse for over thirty minutes before I decided to pull out my iPad and play a few YouTube videos of Rodgers and Hammerstein musicals from past BBC PROMS concerts. Initially, both Kate and Ellen were interested. Then Kate saw a few small pieces of debris from a plant in the center of the table. This started a re-run of an experience she had the night of our anniversary dinner in Knoxville when she mistook the tiny bread crumbs as insects and took pleasure in trying to catch them moving. She did exactly the same thing at Ellen’s. The difference was that she became much more absorbed than she had on our anniversary. She completely tuned out of the YouTube videos to watch “the insects.” She was fixated on them for the next 10-15 minutes. In the meantime, Ellen went to sleep. That left me as the only one watching the videos.

I looked at my watch and saw that it was close to the time for a guest to lead the residents at their Sunday afternoon music time. I suggested we join the crowd. What happened then was my biggest surprise of the day. As we walked in, the woman in charge of the program was playing the piano while the residents and a few staff sang. Kate very quickly joined in. She not only sang; she also danced. The leader played a series of very upbeat and familiar tunes to a group our age. Most of them, however, were further along in their dementia than Kate who became the most active participant. Periodically during the songs and at the end of a song, she said in a very loud voice “Woooooe.” It was loud enough that no one could miss it. A mother and her two teenage daughters were standing near us and got a kick out of Kate’s participation. I am sure the leader was pleased. She probably would have liked everyone to respond in a similar way.

So how did I feel about this? I was pleased. It was good to see her enjoy herself so much. As I have mentioned before, she and I often sing in the car. Sometimes I can push her into dancing a little at home, but she was completely unleashed at Ellen’s. Her filter was off. She responded the way she felt. I liked that, and in this situation it was perfectly acceptable. I would have felt very differently if this happened at one of our music nights at Casa Bella. In Ellen’s memory care facility it was one of our joyful moments.

At the same time, I was sad because this was the first time in a public situation that Kate behaved so much like a person with dementia. Until recently, she has gotten along well. In casual contacts, most people would never suspect that she has Alzheimer’s. That is changing now. She seemed a little like the residents around her. Kate is not at their stage yet, but all the signs suggest she is not far away.

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Joy and Sadness Intertwined

The other day I mentioned that I experience more sad moments now, but that does not mean that we don’t experience many joyful ones as well. Our Saturday meeting with Joan, my Twitter friend, is a good example of that. Even in our daily lives we have such moments. There are also times when I experience both joy and sadness at the same time.

As we arrived home from lunch the other day, Kate asked me her mother’s name. When I told her, she said, “I wish I could have known her.” I said, “Let’s go inside, and I’ll show you some pictures and tell you about her.” Once inside, I took her to the hallway where there are several family photos. I pointed out one of her mother that is a favorite of mine. It must have been taken when she was about twenty. Kate has always liked it as well. She asked me who it was. For several minutes, she looked at it and commented on her mother’s eyes and how beautiful she was. She was deeply touched. Then I showed her pictures of her father. She asked his name and said, “He looks like a good man.” I told her he was “a very good man.” I followed that by showing her a photo of her grandmother. Kate was excited to learn that she had been the first member of the family to attend TCU.

After looking at these pictures, we went back to the family room where I showed her an album she and her brother had made of her mother’s family. It was just like the first time she had ever seen it. She was excited.

After dinner that night, she worked on her iPad for a while. I noticed that she had put it down and was just sitting in the chair looking bored. I brought in the “Big Sister” album that her brother Ken had given her a year ago. We went through a few pages together before I took my shower. She continued to look through it until she was tired, but she had had a day of pleasure looking at her family photos.

They were moments of joy for me as well, but that joy was accompanied by a measure of sadness as I perceived that the pictures did not bring back memories in the way they had done in the past. They only served as brief moments during which I told her about her family. The memory was gone just as fast as I gave her their names. Her interest in the photos struck me as a vain effort to reclaim her memories of family. We’re in a different place now.

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How I’m Feeling

Considering Kate’s recent changes, it’s fair to ask how I’m doing. Let me try to answer that. By now, you know that I am bound to say, “remarkably well,” but it’s more complicated than that. Like Kate’s spirits, mine go up and down in about the same proportion as hers. As I have said before, “When she’s happy, I’m happy.” That implies there are times when she is not happy. That is true for both of us.

After Kate’s unusually happy day a couple of days ago, yesterday and the day before have been a little different. It’s not that she was sad or depressed. She wasn’t. It was that the symptoms of her Alzheimer’s seemed to be more evident. There wasn’t anything new. She just seemed more like she was drifting away, somewhat distant. That was particularly true last night.

At dinner, she asked my name several times and asked what I like people to call me. I said, “Richard.” She asked if that is what she should call me. I told her that would be fine. When she asked, she did so in the very natural way she usually does. What was different was that my name didn’t seem to register with her at all. It didn’t seem any more familiar than the name of the restaurant at which we were eating.

Our evening after dinner was also a little different. She was very tired and wanted to rest about 7:30. I suggested she could get ready for bed. At first, she just wanted to rest on the sofa. I told her it was getting close to bedtime, and it might be better to get ready. After getting into bed, she asked my name in much the same way she had done at dinner. After two or three times, I asked if she knew how we were related. She didn’t. When I told her we were married, she couldn’t believe it. I gave her a little information about our courtship and our wedding. That seemed to ring a bell, but she soon asked my name again. I told her and didn’t say anything more.

She has been gradually drifting way over the past few weeks. That means more moments of sadness for me. Like all things, I knew this would happen eventually, but it is the reality that has the greatest impact. I know that Kate’s condition will only get worse.

The good news is that I have a lot of things to keep me occupied. This blog is one of them. I am editing a book of emails I wrote under my dad’s name the last few years of his life. I am also writing an article for someone else’s blog. I am active on Twitter and with the United Way, Rotary, and the health foundation on whose board I served for nine years. In addition, I donate platelets every 3-4 weeks.

Of course, my primary role is that of Kate’s care partner. While that involves stress, it also incorporates a considerable amount of pleasure. I am thinking specifically of all the social contacts we have in connection with our meals and the many ways in which music plays a role in our lives. Beyond that, I derive satisfaction from helping Kate get through each day. She can’t do it on her own. I am glad to be here for her.

On balance, I believe that I am doing “remarkably well,” but there is no question that there is more sadness in my life as I watch her decline. I can work to minimize it, but I can’t escape it.

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Changes Abound

Since Kate’s diagnosis, she has declined very gradually, imperceptibly at each moment but clearer at the end of each year. The pace stepped up about a year ago and again in the past few weeks or months. I lose track. For a long time, she and I have rehearsed the names of people we will see when we go out. Recently, she seems more concerned about remembering them. I am not surprised. It is impossible for her. She doesn’t do well repeating them back in our “rehearsals” in the car. The desire to get them right, however, is still strong even though most of the situations don’t require the use of names at all.

Last night was opera night at Casa Bella, and I did something different as we met people we know on our way in and as others who came in after us. Typically, I have said, “Kate you remember Paula and Bill” or whomever. This time I simply said, “Kate, this is Paula and Bill.” To me it took the emphasis off of her failure to remember and gave her the sense that she was meeting them for the first time. From her perspective, she was. All of the people I introduced know about her Alzheimer’s and have been very kind to her. I am sure each one recognized that I was trying to be kind to her myself.

That wasn’t the only difference last night. She is also getting more insecure about doing the right things when we are out. Even though I have been ordering her meals for years, she has started taking an interest in looking at the menu. It’s hard for her to read, and she gets frustrated with all the selections. She then turns to me and asks what I recommend for her or says, “What am I going to have?” Of course, she can’t remember my answer. That requires asking multiple times. Last night was the first time I recall her doing this with other people present. When she asked, I said, “I think we should get the veal piccata. It’s always been our favorite.” She said, “Order for me.” She asked at least a couple of additional times before our server took the order.

Something else occurred, but no one else would have noticed. I was seated diagonally across the table from her during the music. I noticed her looking very carefully at the man directly across from her. She was puzzled. She looked to her left and to her right. In a moment, her eyes caught mine. She gave a very subtle sigh of relief. Then she smiled. I knew that she didn’t know where I was. She was uneasy. I have definitely become her security blanket.

Yesterday in an email to my friends Tom Robinson and Bruce Morton, I mentioned something about Kate’s frequently overlooking food on her plate. I often point out half a sandwich or a significant part of her entrée that she hasn’t eaten. This is an issue with her eyesight that seems to be a result of her Alzheimer’s. Her ophthalmologist hasn’t located anything in her eyes that should account for it. There is something else that plays a part. She never remembers what I order or what she is eating except when she sees it. She forgets between bites. Thus, she lacks a memory that might clue her into recognizing she hasn’t eaten her entrée. This happened just this past Saturday. She had eaten half of her sweet potato fries before I reminded her of her salmon. She hadn’t remembered it, and she didn’t notice even though it was right in front of her.

It is impossible for us to fully understand what it is like for someone with dementia. We can only try.

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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.

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Taking Stock of Where We Are

As my recent posts suggest, Kate is on a serious decline. Her rational ability to remember names and places is extremely poor although some things jog her memory. Her photo books and my re-telling stories of family, our marriage, and her own personal experiences continue to be helpful. I don’t believe that she ever remembers on her own that she was an English teacher, school librarian, or church librarian. Even when I mention her degrees and her teaching, she is surprised. She was a volunteer church librarian for 19 years. She does recall that if I give her a little information.

I’ve noticed in recent weeks that she does not ask my name or hers as often as she had done previously. It still comes up, but it appears that she has reached something of a comfort level when she doesn’t remember. Yesterday at lunch, I mentioned something about our having celebrated our anniversary. She asked how many years. I told her, and we talked about how good our life together has been. She can’t recall any specifics on her own, but she talked about our having done so many things. I shifted the conversation and told her she was going to get her hair cut at 3:00. I mentioned the name of woman who cuts our hair. Then she asked her last name. I told her. She had difficulty getting it and asked me to repeat it several times. She said, “I just wanted to know in case I need to introduce her to someone.” I said, “I don’t think you have to worry about having to do that.” I paused and added, “But you might want to remember my name.” She looked as though she hadn’t thought about that and said, “What is your name? I really should know that.” I told her my name. Then she asked her own. She didn’t give any sign of being bothered by not knowing or acknowledging that she didn’t know.

I don’t know that she is actually sleeping any more than in the past, but she wants to rest more often. Resting right after we get home from lunch is common now. Frequently she lies down on the sofa while I sit in a chair across from her. It looks like she spends most of her time pulling her fingers through her hair. She does this every night when she gets in bed. She refers to it as “working” and believes she is doing something good for her hair.

While her rational abilities dwindle, her intuitive abilities shine. Almost every time she passes through the family room, she looks at the flowers blooming on the patio and often asks me to come over to look with her. In the past few weeks, it seems like she has gotten as much pleasure from the flowers and trees around town and our neighborhood as she does from music. I am happy to see that. She has also been looking at a garden magazine I got her a couple of months ago. She wasn’t drawn to it then.

She is more emotional about everything. That includes both happy and sad things. She gets teary far more often. I am more careful about telling her of any news that relates to death. She gets very sad. She also responds more negatively to things that bother her. That includes the heat, sudden noises, and music she hears at some of the restaurants we visit.

She still has moments when she wants to do things for herself. I am glad when that happens. Those moments are becoming fewer, however. When getting dressed, she sometimes asserts her independence and then needs to call on me for help. I feel sorry for her when that happens.

I wonder if this desire for independence is related to something else she has done a couple of times recently. At lunch the other day She said she was going to be taking a trip. I asked where. She said, “I haven’t decided yet.” I asked who she was going with. She said, “I’m not sure.”

Coming back from dinner last week, Kate said, “I’m going to pay attention because I’m thinking about coming out this way sometime. I might bring someone with me.” Another night, when I turned on the car’s air conditioner, she said, “I should be paying attention to this.” If I thought she would have any idea of how to start my car, I might be worried.

What seems most amazing to me is that we still enjoy life and each other. Yesterday was a particularly good day. We didn’t do anything special. We just enjoyed being together. I don’t want these experiences to end. If they do, I will try to remember the good times we have had. We are so fortunate.

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Increasing Insecurity

As I mentioned yesterday, our trip to Asheville was a success, but not everything went as I had planned or wanted. I hadn’t fully grasped the degree to which Kate’s insecurity has increased. It was evident in three different moments while we were away.

The first of these occurred Sunday night on our way to dinner. Our hotel was about three blocks from the restaurant. Even before going, I had taken into account that the heat and the walk could be a problem. Not to worry, I remembered they have bike taxies. I would simply arrange for one to pick us up in front of the hotel and deposit us at the entrance to the restaurant. We had done this the last time we were there.

Let me digress for a moment. As a teenager, I worked for my dad installing venetian blinds in homes and commercial establishments. I learned a lesson that has stuck with me my entire life. There is a standard way to install a venetian blind. The only problem is there are so many non-standard situations. The same principle is true for just about everything else we do – even getting into a bike taxi.

Almost anyone could rather easily get into one, but anyone does not include someone in the late stages of Alzheimer’s. Kate was very nervous. It was just one step up and take a seat. We faced two initial hurdles. One is that she was unable to follow the instructions of the driver. He told her to use one hand to pull on the edge of the carriage seat. She could never get that. She kept grabbing the less sturdy frame of the convertible top. The second problem was that she had trouble lifting her leg to put her foot on the step. The driver decided it would be easier if he pulled over to the curb. That way she could start from a higher elevation. That introduced another problem. Every time we told her to step up, she stepped down. It was only after multiple attempts that we succeeded. It required our moving one of her hands from the frame to the edge of the seat and lifting with her other hand.

We were not off to a good start, and we weren’t “home free.” Kate was uneasy the entire ride to the restaurant. She has become sensitive to lots of little things since her diagnosis. That has been especially true in the past year. She was bothered by every bump in the road, and you feel them more in a bike taxi. Fortunately, it was only three blocks. Of course, the next hurdle was getting her out. She was frightened, but we were successful in less time than we had taken to get her in. I paid and thanked our driver and told him we would walk home.

The next day we had lunch at another restaurant that was also three blocks away. We walked. I was optimistic because our walk home the previous night had gone without a problem. I was wrong again. Kate is sensitive to heat and cold, and it was beginning to warm up. The bigger problem involved her perception of the difficulty of walking on sidewalks and pavement. Like many other people with dementia, she perceives differences in color and shape to be differences in elevation. We did, in fact, walk in a few places where a brick pathway required some care. For the most part, however, we walked on relatively smooth surfaces. Kate was hot and uneasy the whole way as well as going back. Fortunately, she relaxed quickly once inside the restaurant.

It wasn’t long after our return home yesterday, that it was dinner time. We went out for our regular Monday night Mexican meal at Chalupas. As she was getting out of the car, her face came very close to the top corner of the door. (I keep my hand on it to prevent an accident.) She was startled by how close she had come. I lightheartedly said, “There are so many scary things in this world.” She agreed and said in a serious way, “but I feel safe when I am with you.” This is yet again a reminder of how frightening life must be for her. As aware as I am of this, I tend to forget about it in the course of a day. But the best part of the day was yet to come.

We had a pleasant time and enjoyed our conversation. Kate seemed very relaxed. After I paid the check, I said, “Well, would you like to go home now?” She said, “Could we just relax a few minutes?” I said sure. That “few minutes” turned into almost an hour of conversation during which she did most of the talking. She talked about life, about the people who are much less fortunate than we are, about travel and how it broadens our perspective on life.

Several times when she paused I asked if she was ready to go. She said she just enjoyed being together and that she would like it even if we didn’t say anything. This was far from the first time that she has been in a talkative mood. I always enjoy these conversations. She seems so relaxed, so comfortable, so happy, so grateful.

This time her conversation caused me to reflect a little more on her insecurity of the previous twenty-four hours and the shift in her feelings. I have tried to maintain a routine life for her. As a person of routine, that was quite natural for me. It was also based on the experiences of many others who stress the importance of routine for PWD. Until now, I hadn’t been particularly aware of Kate’s experiencing any distress in connection with changes. I wonder now about the strangeness of being in a place she couldn’t remember and encountering things that frightened or bothered her. How was she processing all of that? I only know that she seemed very insecure in moments, but they were not lasting. She still enjoyed other moments like our time at Chalupas last night. She had a number of other special moments while in Asheville. That makes me think about one other experience while we were there.

After finishing her lunch yesterday and before the server removed her plate, she called my attention to the colors of the remaining food on her plate. She pointed to the red of a piece of tomato over “here” and another “over there” and the green of the last pieces of lettuce. She saw them as something beautiful, a work of art. She also took interest in some very small bread crumbs on the table. They were smaller than ants. I thought she was going to tell me they were alive the way she had done this past Friday at dinner in Knoxville. She didn’t. She took them for what they were, just crumbs. Then she surprised me by putting a small piece of lettuce on her thumb and saying, “This one’s still alive.” I said, “I love it when you enjoy such simple pleasures.” We both said the simple ones are the best, and they are.