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A Good Day

Yesterday morning, I walked into our bedroom at 11:00 to check on Kate. She looked like she was asleep but opened her eyes as I approached her. She smiled and asked, “Who are you?” I said, “Would you like to guess?” She said, “My husband?” I said, “We’re off to a good start?” She smiled. She asked my name and then hers. I told her and said I would like to take her to lunch. She said she was hungry but needed her clothes. I pointed them out to her and asked if she wanted to shower. She didn’t. That helped us get ready more quickly than usual.

She was in a good humor and showed a good understanding of my personality. As we walked out of the house, she spit on the floor of the garage. Then she said, “I know that bothers you.” I said, “What makes you think that?” She said, “You like everything just right.” I don’t say much about this, but she frequently says things about me (mostly my OCD tendencies) that are right on target. It continues to amaze me that her feelings for people and things are so strong even as her memory fades.

At home, in the car, at lunch, and the balance of the day, she frequently asked, “Where are we right now?” As I have said before, this is a common experience. It just occurred more yesterday.

The weather this week and next is supposed to be cold, so I wanted to get her a couple of new sweaters. I took her to a department store not far from the restaurant where we had lunch. I had mentioned this before lunch, and she frowned. She doesn’t care much for shopping. It could be that it is too confusing for her to look at her options and make a decision. After lunch I didn’t tell her where we were going. I just drove to the store. We got out and went directly to the sweaters. I picked out three things in the right size and asked how she liked them. They were fine. She wasn’t excited about having new clothes, but I felt better than we have more options now.

We had dinner with friends we had met at Casa Bella on their Broadway nights. We have gotten together with them on several other occasions. Kate was less active in our conversation than the three of us, but she enjoyed herself. We will be with them this coming Monday night at Casa Bella for their annual Christmas dinner and again next Wednesday for a concert a short drive from Knoxville. It’s good for both of us to expand our social connections.

When we got home, we watched a series of YouTube videos of Christmas music sung by the Tabernacle Choir. She was enthralled by them. When I turned off the music, she talked about how much she enjoyed our being able to share in the music together. As I helped her get ready for bed, we had another special moment. She thanked me “for all you do for me.” She said she thought we were a good match for each other.  It wasn’t until she said, “I think we are going to make a good team.” that I realized she was talking as though we were not married but anticipating it. She was optimistic about our future together and stumbled over her words. I said, “Do you mean ‘mature together?’” She said, “Yes, we’re going to mature together.” Then she mentioned that she was going to want children and thought I felt the same way. As we got into bed, she said, “This is the first time I have felt like a real grown up.” She continued to talk about how good she felt about us. It was interesting that she never asked my name, her name, or the names of her parents. She was absorbed in our relationship, and so was I.

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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.

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A Good Last Day with the Franklins

Late yesterday afternoon, Virginia and Ken caught a flight back to Texas. It was a very good visit for us, and, I believe, for them. I really hated to see them go. Given Ken’s own Alzheimer’s diagnosis, one might expect them to be understanding of our situation, and they are. They are also very thoughtful guests and were long before Alzheimer’s entered both of our worlds. They are the only people I know who can visit and make you feel like you are the guest. That’s a good thing; they make you feel special.

For me, the highlight of the visit was the first afternoon when Kate and Ken spent over three hours together going through family photo books. Even though Virginia and I were in the kitchen the whole time, it was special for us to know they were having such a special moment together.

Each day Kate slept late and would have slept later if I hadn’t gotten her up. Yesterday she was especially tired, but she got up without a fuss. I hated to wake her, I felt like the time with the Franklins was too precious to let her sleep too long.

I’ve reported on two recent social situations in which Kate’s conversation has been unusually bold as though she were working to get attention. She had one of those experiences yesterday before going to lunch. I think she was trying to be humorous, but it wasn’t working. It was totally unlike her. It continued for a time at lunch, but she soon settled down.

Kate and Ken have a cousin whose husband had Alzheimer’s. I know that she used to carry small cards that she gave to people letting them know of her husband’s diagnosis and asking for their understanding. I’ve kept that tucked away in the back of my mind for a  long time but haven’t felt a need for them. These recent experiences have led me to believe otherwise.

After returning from lunch, we had another hour to relax before the Franklins left for the airport. I have to admit to more than a bit of sadness as their departure approached. I can’t predict if and when the four of us might be together again. As I have said in other posts, I know it is unlikely that we will make another trip to Texas. I also know that Kate will not be the same if they are able to visit us again. In that sense, this visit was another of those “last moments” that become treasured memories.

There were a number of things that made our time together special. The obvious one is the sibling relationship between Kate and Ken. It is also the longevity of our relationship as couples. We have lived apart all that time, but we have visited in one another’s homes many times. We have shared responsibilities of parent care. Now there is something else that unites us. We are all living with Alzheimer’s. Throughout their visit, I could sense that connection. Ken and Virginia were very understanding about things like getting started in the morning and my having to step aside to help Kate get ready. It was a little like having a support group at our house for the entire visit. I’ll miss that.

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Another Good Day

Kate didn’t want to get up yesterday. I suspect that may have been a result of our having gotten to bed a little later the night before and our early morning experience when she lost another hour’s sleep. Not only that, I feel sure it was taxing for her to be in a lengthy social situation during most of the day and that evening. Ken and Virginia went to Panera early and then came over to the house while I was trying to get Kate ready. Their being here helped me explain why I wanted her to get up. She didn’t protest at all. She was simply tired.

We went to lunch at one of Ken’s favorite places from his past visits. We ended lunch with a special dessert, hot fudge sundae over a brownie in a large goblet. Kate and I have watched it served during the forty years we have eaten there. We’ve always said that one day we would have to try it. It was Ken’s birthday. That seemed like the time, and it was.

Once back at the house, Kate lay down to rest in our bedroom. I think she rested a full two hours before I got her up. She and Ken looked over more of the photo books and then we were off to dinner. We had another good meal, conversation, and, of course, a high-calorie dessert. It was another good way to celebrate Ken’s 75th birthday.

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A Great Day with the Franklins

I love being able to report good news, and that’s what I have in this report. Yesterday was our first full day with Ken and Virginia. Kate did not sleep as late as she has been. That enabled us to meet them at Panera for Kate’s muffin, morning beverages, and good conversation. From there we went to lunch at Carla’s. We are taking them to some of our regular places to give them an idea of our daily routine for the past few years.

If the day had ended right after lunch, I would have said we had a really good day, but the best was yet to come. Virginia and I were both hoping that Kate and Ken would have an opportunity to enjoy their time together apart from the four of us. I wasn’t quite sure how we might orchestrate that, but that turned out not to be a problem. After we returned home, they sat down on the sofa in the family room and started looking at some of the family photo books. Virginia and I made an exit to the kitchen. The two of them reviewed family photos and talked for at least three hours. I don’t recall another time that Kate has engaged in conversation with anyone else for that length of time.

I only wish I could have listened in on what they were saying. I do know one thing. More than two hours after they had been talking, Virginia heard Kate say, “What’s your name?” After Ken answered, she said, “And you’re my brother?” Later I mentioned that to Ken. He said she asked his name several times as they were talking. He said she asked very naturally. I was so glad he had that experience. That is exactly the experience I have with her.

Before we left for dinner. I asked if she would like to use the bathroom before we left. She said, “Yes, where is it?” I told her I would show her. She met the three of us in the kitchen a few minutes later. She walked in as though she had never been there before and said, “This is a nice kitchen.”

We topped off our day with dinner at Casa Bella. It was the last night for their program of music from Les Miserables. All of us enjoyed the music and food. It was a great evening and a suiting end to a very good day.

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Music and Time with Friends

After returning from the museum yesterday, I decided to make dinner reservations at Casa Bella. I knew it was one of their Broadway nights and that they were having another performance of the music from Les Miserables. We had already seen it once, so I wanted to see if we could eat in the front room that is separated from the music. To my surprise, they told me that I had reservations for four people in the room with the music. At first, I started to decline. Then I thought it might be fun to go and take someone with us. We’d been to dinner with Angela and Marvin Green a couple of weeks ago and have talked with them about the music nights at Casa Bella several times. I called, and they were able to go with us.

Kate and I had a wonderful time. Both the conversation and music were “as good as it gets.” It was a lively audience. That meant it was noisier before the music started. That didn’t prevent our own lively conversation. I do think it was harder for Kate to understand what was being said, but she enjoyed herself as much as the rest of us. She was moved by the music and expressed her joy audibly though softly enough that only those seated close to her could hear.

It was a day that could have been an ordinary Thursday, but it turned out to be special. The visit to the museum and the dinner and music with good friends were the highlight. I make a point of this because so many of my recent posts have focused on Kate’s decline, and I like to communicate that we continue to enjoy life. I don’t mean to minimize the sadness that accompanies Kate’s Alzheimer’s, but the stimulation of getting out as much as we can makes a significant difference in how well we are able to adapt. It works.

After dropping the Greens off at their home last night, Kate said, “Are we legal?” I said, “Do you mean ‘Are we legally married?’” I told her we are, and she said, “Good.” Later, when we got in bed, she said, “I love you.” I said, “And, we’re legal.”

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A Visit to the Art Museum

I’ve been thinking about taking Kate to our local museum of art for some time . The past several days have been cold and rainy. It seemed like a good time to act on that desire. We went right after lunch yesterday. I didn’t tell Kate where we were going until we got out of the car. That’s when I mentioned that the museum had been undergoing a renovation, and I was interested in seeing what it was like.

Once in the gallery she was quite interested. I was surprised that she seemed to express more interest than I have noticed on previous visits to that museum or any other. Her interest was diverse and included sculpture and paintings of different periods and styles. It did not surprise me that she was taken by several paintings that included children and babies. One sculpture that she liked was of a young boy unclothed sitting in a chair. The accompanying information indicated that it was a depiction of childhood innocence. Moments later, perhaps seconds, she turned around to look at something else. When she turned back, she saw the sculpture again and responded as though it were the first time. She did the same thing with another favorite painting. It was a mother with her infant child in her lap. She had a hard time taking her eyes from it.

We had been there almost an hour when Kate wanted to find a restroom. I walked her to the door and waited just outside. In a few minutes, I heard her say, “Hello. . . Hello.” I suspected she was “lost.” I opened the door and said, “Hello.” She hadn’t been able to find the door. It was located so that she couldn’t immediately see it from either the stalls or the sinks. She hadn’t panicked, but she was relieved to see me. (This reminded me of an incident in Memphis the last time we visited our daughter Jesse. Kate locked herself in the restroom and couldn’t figure out how to unlock the door. This past Saturday when we visited our friend Ellen in her memory care facility, an attendant showed us the restroom and said that the door was always locked from the outside but not from the inside. They were not going to take any chances of a resident’s being locked in. One doesn’t usually think about little things like this until coming face-to-face with Alzheimer’s.)

I decided we had had a good visit. It was time to go back home. I plan to return soon.

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Another Slow Start and Strong Finish

Because we were going to Nashville yesterday to visit our friend, Ellen, I wanted to get Kate up a little earlier and hoped that would be possible given that she went to bed earlier the night before. That wasn’t to be. It took over an hour to get her out of bed. She was very tired, but I didn’t rush her. She never got upset with me. Nor did she give me any strange looks as though she didn’t recognize me. Close to the time she got up she said, “Where am I?” I told her she was in her bedroom at her house in Knoxville.” She said, “Who are you?” I said, “I’ll bet I don’t look like a stranger.” She said, “No.” Then I told her that I am her husband. She didn’t express surprise or any other emotion. Then she asked, “What’s your name?” After I told her, she said, “What’s my name?” I told her. Again, she asked, “Where am I?” Then, “What’s your name?” She asked me to repeat my name slowly. Over the course of the next 10-15 minutes, she repeated these questions several times.

She wanted my help getting out of bed. She also wanted me to tell her what she should do. I suggested that she go to the bathroom and then get dressed. That gave her too much information. I led her to the bathroom. After using the toilet, she wanted to know  what she should do. I told her she should brush her teeth. When she was finished, I helped her with her clothes. She still likes to do as much as she can, but she also likes me to help, especially determining the front and back of her pants and top. She also gets her feet stuck in the pant legs. I get the bottom of the pant legs over her feet. Then she is fine.

After she was dressed, she began to appear normal. We had a quick lunch at Panera and left for Nashville where we had a good visit with Ellen. She was surprised and glad to see us. I am sure that her daughter had told her we were coming. She just can’t remember. That is one of the few signs I can see of her memory problems. She is always surprised to see us. I also notice it in other things like her not remembering the names of her grandchildren. During our last visit, I noticed some signs of confusion. This time she seemed more confused. I was surprised, however, that I was able to understand more of what she said this time than the last. It could be that her ability to speak goes through ups and downs in the same way that Kate’s memory does.

We were with Ellen a full two hours. We don’t often stay that long, and it didn’t seem long at all. I didn’t play as much music as our two previous times, but it was just as meaningful as before. I played a series of YouTube videos of Renee Fleming. At one point, Kate reached out and took Ellen’s hand, and they shed a few tears as they enjoyed the music. I love seeing each of them express such enjoyment. I sometimes wonder how long we will be able to keep up these visits. Both of them are declining, but I don’t see anything yet that will prevent our continuing to come. I hope that’s so.

We stopped for dinner on the way home. It was a restaurant that is a cut above most of the ones we frequent, but it seemed like a good way to celebrate such a nice afternoon. It made for another nice moment for Kate and me. We got home late, so I’ll be interested in seeing when Kate gets up this morning. I checked on her a few minutes ago. She had gotten up to go to the bathroom and then went the guest room and got into bed. When I asked if she wanted to rest a little longer, she smiled and said she did. I didn’t see any sign of confusion, and she seemed both cheerful and relaxed.

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Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

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A Full Day Yesterday

Despite Kate’s getting up unusually early yesterday, she didn’t nap at all. Part of the reason was that, except for two hours, we were gone all day. I had fully expected her to want to return home from Panera for a nap before lunch, but we stayed there until meeting our pastor for lunch at another restaurant. We had a very good visit with him and took a longer-than-usual lunch. Kate handled herself beautifully. She had been the volunteer church librarian for 19 years. Our pastor commented about the contribution she had made in that role. It didn’t take any encouragement for Kate to speak up about the library and how she managed it. I love seeing her get opportunities like this. On so many other occasions, she finds herself in conversations in which she is unable to contribute much.

We had just enough time to freshen up before Kate’s bi-weekly massage. Kate was in the waiting area of the spa when I picked her up. I said, “Did you enjoy it?” She said, “What?” I said, “Your massage.” She said, “I didn’t have a massage.” That’s a striking example of how short “short-term memory” can be.

After that, we came home for two hours before going to dinner. During that time, we relaxed in the family room, she on her iPad and I on my laptop with music playing all the time, of course. It was a very pleasant time. We followed that by going to dinner at Bonefish Grill.

Near the end of our meal, Kate wanted to use the restroom. It was located in a direct line from our booth to the back of the restaurant, but I walked her there to avoid any confusion. Then I went back to our booth and sat on her side of the table so that I could watch for her when she came out. I wasn’t surprised when she walked out of the restroom and took an immediate left instead of walking straight to our seats. When I caught up to her, she was entering the section where the bar is located. I called to her, and she turned around. She looked very relieved. When we got back to our seats, she thanked me for getting her. Then she said, “I didn’t panic at all.” Moments later she confessed that she was worried and thought I might not be able to find her.

On the way home, Kate said, “If someone were to ask where we live, what would you say?” I told her. Then she said, “Who are my parents?” That prompted me to tell her not only their names, but that her Dad was from Fort Worth and her mother from Battle Creek. Then she asked how they got together. As I told her about their meeting in Michigan, falling in love, their marriage, and her mother’s moving to Texas, she was excited just as though this were the first time she had every heard the story. For her, of course, it really was like the first time. She showed no recognition at all of her mother’s being from Michigan or anything else I told her.

I wasn’t surprised that Kate wanted to get ready for bed soon after we got home. First she brushed her teeth in the guest bath next to our bedroom. When she came out she didn’t know where to go. I heard her say, “Hey” and went to her. I brought her to our bedroom. A few minutes later she left to get something. She got lost again. Again, I heard her say “Hey.” This time she had made her way to the kitchen. It’s just another example of how even the things she has held on to the longest are drifting away.