“Little Things Mean A Lot”

In 1954, Billboard ranked Kitty Kallen’s “Little Things Mean A Lot” the number 1 song of the year. It apparently meant a lot to a lot of people. That popped into my head as I thought about today’s post. This follows an earlier post this week when I mentioned Kate’s delight in the “beauty” of her leftover sandwich at a restaurant in Asheville. She derives much pleasure from simple things. She’s not alone. I do too.

The other day someone I follow on Twitter mentioned that her father had written her a letter in which he said sometimes little things can carry you through an entire week. I find that to be true. In fact, it’s even better than that with Kate. During any given week, we encounter a number of touching moments that help me through the week. Let me tell you about three of them that occurred in the past 48 hours.

Thursday night after returning from opera night at Casa Bella, I turned on a YouTube video of selected segments from Andre Rieu concerts. Kate got in bed, and I went to take a shower. After showering, I noticed that Kate’s arms were uplifted, and she was holding her hands together as if she were praying. I think, in a way, she was. She was enraptured by the music. That was the second time I have observed this. The first was during the song “Bring Him Home” on a DVD video of Les Miserables. In both instances, her eyes were closed, and she was entranced throughout the song. I was touched to see her loving the music so deeply.

Last night, I tucked her bed before and told her I loved her. She looked surprised and said, “You do?” I knew immediately that this was one of those moments when she didn’t recall that we are married and said, “Yes.” She said, “I’m glad. I was hoping you did.” I said, “I love you.” She said, “Me too.” It was such a little thing; however, at this stage of her Alzheimer’s, it means a lot to me. She may not always know my name or that I am her husband, but she still has the same feelings.

The third moment actually occurred over a three-hour period between 1:00 and 4:00 this morning. I got up at 1:05 to go to the bathroom. When I got back in bed, she moved close to me and put her arm over my chest. She moved a bit during the next three hours but not much. I think she was pretty much asleep during the entire time. She chuckled a few times and said a few words that I didn’t understand. I think she was dreaming. What struck me was how naturally she held me. I took it as an expression of love. Once again, she is losing her memory of my name and her own and the fact that we are married, but she retains her feelings. Right now that is worth its weight in gold.

Bedtime Conversation

I am glad to report that the rest of our day yesterday went well. It was a good day. Once again, I want to underscore that did not mean any improvement in Kate’s memory or her confusion. In fact, the past few days she seems to be worse. I say it was good because she was happy and that we enjoyed ourselves.

Throughout the day she couldn’t remember my name and our relationship. Neither could she remember her own name. The difference from the morning was her not showing any signs of being frightened. When she wanted to know my name or hers, she asked as naturally as one might say, “Would you pass the butter, please?” The day ended in a conversation that was just that natural.

Kate got in bed about thirty minutes before me. The past few months I’ve been playing a variety of soft music while we go to sleep. Most of the time I play instrumental music. Last night I put on an old Nat King Cole album. When I got in bed, she said, “I like that. Who’s singing?” I told her. She asked, “What do you want me to do in the morning?” I said, “Well, we’re having lunch with a couple we know from Casa Bella’s music nights. We’re supposed to meet them at noon. I’ll probably get you up around 10:00 so that you will have time to shower and dress.” She said, “Who’s that singing?” I told her again. She said, “Tell me exactly what we’re going to do tomorrow.” This time I repeated what I had said before but added that we might drop by to see a friend who just returned home from the hospital and rehab and then come back to the house until time for dinner. She said, “Who’s singing?” I told her again. She said, “Tell me what we’re going to do tomorrow. Again, I repeated myself. She said, “Who’s that singing?” I said, “Nat King Cole. That’s one of our oldest albums (now streaming from Amazon rather than the original LP), and we’ve been together a long time.” She said, “How long?” I said, “Fifty-six years, and I still love you.” She said, “I love you too.” I said, “We have a lot to be grateful for.” She said, “Like what?” I said, “Well, we have two children that we’re very proud of.” She said, “We have children? Are we married?” I said, “Yes, we’re married and have two children.” She said, “What’s your name?” I told her. Then she asked her name.

We went through two or three more rounds of these questions and answers before Kate said, “I’m going to sleep now.” I told her I was going to do the same. It wasn’t long before we were both asleep. I know I was.

Dealing with Squamous Cell Carcinoma

Except for our regular appointments with our doctors and dentists, Kate and I have had little reason for medical treatment since her diagnosis. A year ago, Kate’s arthritis in her right knee led us to an orthopedic clinic for a shot of cortisone. She has gotten along well since then although she complained of a little pain a few months ago. More recently, I have asked her on several occasions if she felt any pain. She has always said she didn’t.

Four or five weeks ago, I noticed a small growth at the edge of her upper lip. It had been well over five years since she had seen her dermatologist. I made an appointment, and the doctor performed a biopsy. A week later, I received a call that the she has a squamous cell carcinoma. We arranged an appointment to have it removed. It was scheduled for noon yesterday.

I much preferred an afternoon appointment. That would have been much easier for Kate and for me as well. That’s because I would have to wake her earlier to have lunch before the surgery. Unfortunately, we would have had to postpone the appointment until much later. They didn’t recommend that.

Every time I face getting her up early, I do so with a bit of trepidation. This time there was no problem at all. Although I had to wake her, she got up easily. That enabled us to have a leisurely lunch and arrive at the doctor’s office twenty minutes before noon. I didn’t mention where we were going until lunch. Kate didn’t understand why we needed to see the doctor and quickly forgot. I explained again on the way over, but she never really grasped the problem.

The doctor who was to perform the surgery was not her regular dermatologist. This doctor is a specialist in squamous cell carcinoma. He immediately noticed that it was hard to see the spot where the biopsy had been taken. Her dermatologist had either removed a large portion of it or it had diminished since the biopsy. The specialist summarized five or six options for treatment. They included complete surgical removal, radiation, freezing, and a topical chemical treatment that we could give at home twice a day for three weeks. After a brief discussion, we settled on the chemical treatment. That requires a compounding pharmacist. I took the prescription to the pharmacy, but they said it would be 24 hours before they would have it ready. I’ll pick it up later today.

As you might expect, the whole process was confusing for Kate. I tried to translate the doctor’s explanations, but she never really understood why she was there and that she had almost had surgery. In this situation, I didn’t think that was a bad thing. She didn’t seem annoyed or frustrated by it all. She wanted to understand what the doctor was saying. She just couldn’t.

I had a United Way meeting at 1:30 and had arranged for our sitter to meet us at the dermatologist’s office at 1:00. She arrived a few minutes before that as we were checking out. Perfect timing. This was one of those times it was really nice to have a sitter. She was able to take Kate home while I went to my meeting. Kate mentioned that she was hungry, so they dropped by Panera on the way. That meant she had a second lunch, but it also helped Kate pass the time until I got home later.

The balance of the day went well. At dinner, we ran into three people we know and had nice conversations with them. At home, we watched an Andre Rieu concert from London on YouTube. Kate enjoyed it more than usual. I’m glad to report it was a good day.

More on Mother’s Day Cards

After lunch yesterday, Kate and I relaxed at home for a short time before leaving for an appointment. She took a seat in the family room. I showed her the two Mother’s Day cards she had received from our daughter and her boys and asked if she would like to look at them. She said, “Of course!” She picked up the one from our daughter first and commented on the “beautiful” colors on the front. Then she opened it and read the message. I asked if she would like for me to read it for her. She declined at first but changed her mind when she stumbled on a few words. When I finished reading it to her, she did just what she had done yesterday. She was in tears and held it in her arms and clutched the card to her chest. She said, “I’m gonna take this with me.” I’m not sure where she thought we were going. She may have been thinking about a move to Texas. That still comes up once in a while.

After finishing that card, she read the one from her grandsons. She had the same reaction to it. It wasn’t long before she wanted to lie down on the sofa. She held both cards closely. She wanted to know if she could take them with her. I told her they were her cards and she could do whatever she wanted. She said, “They’re mine? They don’t belong to anyone else?” She read through the cards one more time while lying on the sofa. Then she put them under one arm and closed her eyes for a short nap. It was touching to see her experience so much pleasure.

It Was a Good Day.

After her confusion first thing yesterday morning, Kate was fine when she got  two hours later. We had a nice Mother’s Day lunch at Andriana’s and returned home around 3:00. When we went to bed, I wondered if we might have another night of conversation. Fortunately, we both slept well.

Things Turned Out All Right Yesterday

After a rocky start yesterday, Kate awoke around 10:45 and was perfectly normal. I didn’t test her to see if she knew our names or our relationship, but she acted as though she did. Before I reminded her that I would be going to Rotary and that the sitter was coming to take her lunch, she was prepared for us to go out together. I thought my telling her I was leaving might change how well things were going. Fortunately, that wasn’t a problem. I suggested that she work on her iPad a few minutes until Cindy arrived. She arrived about ten minutes later. When Kate saw her, she said, “It’s good to see you.”

After Cindy left, Kate was ready to go. It was too early for dinner. We went to Panera for an hour and then to dinner. She was quite tired when we got home. She actually rested a while before going to bed. I think she had not had her afternoon nap. She was in bed by 8:00 although she was awake when I got to bed at 9:30.

Around 4:00 this morning, I felt her move in the bed. She seemed uneasy. I wasn’t sure she was awake, but I asked if she was all right. She said, “I don’t know.” She seemed like she may have been dreaming and that something had disturbed her. She moved closer to me and held my arm tightly. I thought she was frightened and asked if she was afraid. Again, she said, “I don’t know.” This reminded me of the way she was when she got up the first time yesterday morning. She didn’t say anything more. I said, “I am right here with you. You’re going to be all right. I’ll see to that.” She still didn’t say anything. I held her for the next forty-five minutes before she said, “Do we have a wedding?” I told her we didn’t. Then she asked if we have a daughter. I told her we do and that she was already married and had two children. She said, “So we don’t have a wedding?” I told her we didn’t and didn’t have anything she needed to be worried about. I was asleep shortly after 5:00. I’m not sure she was really awake at all during that hour.

A Great Day with Kate’s Brother and His Wife

I am glad to report that yesterday’s visit with Ken and Virginia went very well. I have no idea how much of the time Kate recognized the two of them by name and/or relationship. What I know is that she enjoyed herself.

After the previous night in which she was confused about them, yesterday’s experience was a welcome one. Ken and Virginia came over about an hour before I woke Kate. When I got her up, I told her they were here and that we were going to take them to lunch. She was resting comfortably. I know she could have stayed in bed much longer, but she got up easily. When I brought her into the family room, I said, “Guess who’s here? Your brother Ken and Virginia.” They greeted her warmly, and we were off to a good start.

I had talked with Virginia about our going to the zoo after lunch. She and I both had mentioned that to Kate who responded negatively. That isn’t unusual except that her response seemed to be stronger this time. In the past, I have found that once we are there, she enjoys herself. I think it’s a good place for her because we do it leisurely, and she always finds things that are interesting. That happened again yesterday.

When we arrived, I suggested that they get out while I parked the car. Kate said, “Can’t I go with you?” That was the only indication of any insecurity I noticed the entire day. Instead of trying to take an overall tour, we went directly to the aquarium and reptile center. Kate especially enjoyed the fish. Then we went to see the Koalas and feed the Lorikeets. The latter is always a hit. Kate said she was hungry. We suggested getting ice cream which we did after leaving the Lorikeet exhibit. It was a perfect day for the zoo. Although it was windy, it was sunny and in the 70s. It was pleasant walking around as well as breaking for ice cream. From the zoo, we came home. Ken and Virginia went back to their hotel. Kate rested as well.

About an hour later, we went to dinner and then had some additional time for conversation at home. That turned out to be especially good for Kate. As people our age are prone to do, we reflected on our lives and the way we felt about the way life had turned out for us. That led to a longer conversation about our families, especially our parents. That opened the floodgates for Kate who has a strong admiration for her mother.

I doubt that any of the “facts” she told us were things that actually happened, but they did convey the truth about her feelings for her mother and herself. What she said was very self-revealing. She felt a need to live up to her mother’s reputation and found that intimidating. She told us that her mother and some of her mother’s friends had encouraged her to be her own person. She also talked about her own school achievements, especially academic ones. (These were true.) She didn’t say anything about her Alzheimer’s, but I am sure she has felt a loss of self-esteem. She often says things like “I’m smart, you know.” Or “I’m not stupid.” Indeed, she is not, but Alzheimer’s has altered brain in a way that makes it appear that she is.

I felt that this was a conversation that she couldn’t have had with anyone else. I’ll never know if she remembered their names or their relationship to her, but she clearly felt a kinship with Ken and Virginia. They listened to her and facilitated her conversation. They understood about living in her world. At one point, Ken said something about their father. Kate said, “My father did (or said) that too.” Ken started to explain that they had the same father and realized that was unimportant and let it pass. This kind of facilitation worked. Kate talked more than in a long time. I was happy for her to have such a receptive, understanding audience.

A Good Day

After resting so much the day before, I hoped that Kate would be up a little earlier yesterday. I got my wish. I didn’t have to wake her. She wasn’t up early enough for Panera, but we did get to lunch shortly after 11:30. She was happy, and we enjoyed our lunch time together.

It didn’t surprise me that she wanted to rest as soon as we got home. She is doing that quite regularly these days. We had hair appointments at 3:00. About 2:25, I reminded her of that, and she got up right away. She took a little time to brush her teeth and use the bathroom, but we arrived for our appointments almost ten minutes early.

When we returned home, she worked on her iPad until time for dinner. That was a little over an hour. She continues to have trouble with the puzzles but did pretty well.

The best part of the day occurred at home after dinner. I have mentioned before that Kate often says, “That goes in the book.” She does that whenever we are talking about things that happened in the past. Almost a year ago, I jotted down a number of things that I thought were of importance to her. That includes the names of her family (grandparents, parents, brother and his wife, our children and grandchildren) our courtship and marriage, places we have lived and traveled, as well as a couple of letters I had sent to my parents when we were dating, one from Kate’s mother to my parents during that same period of time, and another from our son that he sent to us after our 50th anniversary. I put the information in a three-ring binder and included some family photos in the back.

After dinner, I asked Kate if she would like to look at it while I watched the news. She did and enjoyed it. It was difficult for her to read, and she asked me to read parts to her. I was pleased that she was interested. She hasn’t expressed much interest until the past few days. She prefers her photo books. I suspect her memory loss may play a part in the recent appeal of reading about things that have been so much a part of her life.

Going through the book gave a little more understanding of the challenges she has with reading and her photo books. For example, I read the letter from our son. I, of course, told her it was from Kevin. In addition, he talks about us and our marriage from his perspective throughout the letter. When I finished with “Love, Kevin,” she was almost in tears. She said it was beautiful and thanked me for writing it. It’s another illustration of the weakness of her rational abilities and the strength of her intuitive ones. She couldn’t remember that it was from Kevin nor pick up that it was from him by what he said. She was, however, able to pick up on the feelings expressed. She may have assumed it was from me since I read it to her.

Another example involved four photographs I had just added to the binder. One of those is of her grandmother that was taken in Lucerne, Switzerland in the mid-1930s. The other is one of us taken in the same spot in 2015. I had them enlarged to 8 x 10s so that she could see them more easily. I told her who the people were and asked if she noticed anything about where the pictures were taken. She didn’t understand what I was asking. I said, “Do you see anything similar about the two pictures?” It took a lot of help on my part for her to see they were taken at the same place. She would never have noticed without my help.

The other two pictures were of her mother taken on the boardwalk in Quebec City with the Chateau Frontenac Hotel in the background and one of Kate taken in the same place. Her parents had stayed at the hotel on their honeymoon in 1936. We stayed there our on our 41st anniversary in 2004. I went through the same routine with these pictures. I’m not sure she ever understood what they had in common. If she did, it didn’t generate any interest. She was, however, interested in the binder’s overall contents. I am glad about that because it gives her something else to enjoy besides her puzzles and photo books. I also intend to add more information. There is plenty of material I can add. The challenge is how to package it in such a way that it is not overwhelming.

By the way, I originally printed it in a 14-pt. font. I have gradually increased it to 36. I think that may be where I stop. She seemed to be able to read that.

The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

Another Good Experience with the Sitter

I don’t have a good explanation, but Kate has seemed to accept the sitter happily over the past three weeks or so. Yesterday’s experience was the best yet. It reminded me of another experience in that I didn’t leave immediately after Mary arrived. I was trying to take care of some last-minute tax business and continued working at least another thirty minutes. I was in the kitchen and could hear the two of them talking but had no idea what they were talking about.

When I was ready to leave, I walked into the family room where Kate and Mary were seated side by side on the love seat. They were looking at one of Kate’s photo books. I assumed it was one of the family books. When I got closer, I could see that it was a photo book I had made two years ago with photos taken during several of our summer visits to Chautauqua. I stopped a minute and just listened. Kate was telling her about the beauty of the places in the photos. She came to one and said, “I don’t know what this is?” I told her.

Knowing that recently Kate has been unable to remember Chautauqua, I couldn’t help but wonder what she had been telling Mary. It was clear that she was saying something about the various pictures. I was just happy to leave her while she was having such a good time.

When I got home, they were seated in exactly the same place. This time they were looking at photos from an old album that I believe her father had put together. Kate said, “You should have gotten here earlier. We needed you.” I said, “What for?” She said, “To help us identify who all these people are.” I identified her mother and father. Before Mary left, she told me that they had taken a break during the afternoon. Kate took a nap. Then they went back to their photos. I felt good knowing that Kate had been perfectly comfortable while I was away. The way I saw them interacting was just like two friends talking. I consider that a real victory.

After Mary left, I sat down with Kate. We spent the next fifteen minutes looking at photos before she said she was getting tired. It was getting close to dinner time, so I suggested we get ready for our Friday night pizza.

I should add that one thing Kate has lacked the past four years is a close friend. Prior to that she and her friend Ellen ate lunch every Monday while I was at Rotary. They also got together one or two other times during the week. Ellen’s stroke changed everything. The stroke occurred while she was visiting her daughter in Nashville. She was never able to return to home and has been in memory care for almost two years. Kate and I visit her regularly, but that is very different from the kind of relationship the two of them had for so many years. Thus, the development of a closer relationship with the sitters could go a long way in filling the vacuum that Ellen left behind. I don’t expect the relationship to be the same as it was with her, but I feel encouraged by the way things are going.