Our Roughest Day, But, Again, a Nice Finish

Yesterday, as I walked out of the bathroom to get dressed, Kate said, “Hello.” I went over to the bed. She was uneasy. It turned out that she had awakened while I was in the bathroom and didn’t know where I was. Several times over the next ten minutes or so, she said, “I didn’t know where you were. I thought I had done something wrong.” (She is very sensitive about doing the right thing.) I took her to the bathroom. She was very unsure of herself and needed my help even more than usual. She was still emotional when I took her back to bed.

It was no surprise that she wanted me to stay with her. I got in bed with her and stayed for another thirty minutes. She seemed calm though not asleep. I told her I was thinking about getting dressed and having breakfast and then returning to the bedroom and working in the chair beside her side of the bed. She said that was fine. I was encouraged.

Less than an hour later, she started to get up. She wanted to go to the bathroom again. This time she took a shower and then rested in bed for almost another hour. I don’t recall anything unusual until just before we left for Panera. She said she felt a little sick. Then she said, “Maybe I’m just hungry.” On the way, she was talkative, but she had much more trouble than usual speaking her words correctly. In addition, I was clear about the content of what she was saying. She was delusional. She mentioned people we were meeting or had been with. I really couldn’t make sense of what she was saying. At Panera and on the way home, she exhibited the same symptoms. They were noticeably more severe than in the past. Before finishing her muffin, she took it off her plate and set it on the table. Then she picked up every crumb that was on the plate until it was spotless. This is something I have seen her do a few other times. Occasionally, she does the same thing with the table top.

I began to wonder if she might have had a TIA, but the only symptoms she had were ones that she has had before, and they didn’t seem to be like those we generally associate with a stroke. Nevertheless, I gave her four baby aspirin as soon as we got in the house. She was very tired and lay down on the sofa.

Only minutes later, the sitter arrived. I met her outside and explained what was going on and encouraged her to call me if she needed anything while I was gone. I didn’t hear from her and felt that was a good sign. Generally, by lunch problems like these would be gone. When I returned, she was resting on the sofa. Cindy told me she had eaten a good lunch and had been resting since they returned home.

After Cindy left, I asked Kate if she would like to look at one of her photo books or read something. When I mentioned Anne Frank’s diary, she expressed interest. I picked up the book and sat beside her on the sofa. I read several entries before she said she was tired. She rested about thirty minutes before I suggested that we go to dinner. She was still very tired but got up without a problem.

She was talkative on the way to the restaurant. Once again, however, I had difficulty understanding what she said. I know it involved other people that she thought I knew. She also had trouble with her words. At one point, she said something about “blee.” I finally realized she meant blue.

We sat in a booth at the restaurant, and she wanted me to sit beside her. That happens much more now. She had two cheese burritos. She still had one remaining when I finished my meal. I had cut the first one into bite-size pieces. She tried to do the same with the second one. I offered to help. Instead of eating them, she started moving them around on her plate using her fingers. It soon became clear that she was creating a “work of art.” She tried to explain, but I couldn’t fully understand except that she wanted me to take a picture of the plate of these pieces. She wanted one picture of the plate and piece alone and one with her in the photo. I obliged her.

When we walked up to the counter to pay, there were two other people in line in front of us. Kate was restless. She didn’t understand what they were doing and wanted me to go ahead of them. I explained a couple of times that we needed to wait until they were finished. The woman immediately ahead of us had opened the door to leave when Kate called to her. The woman stopped and looked around. Kate asked her if she would take a picture of the two of us. By now there was another waiting behind me. I started to tell Kate that we should let the woman go. Then I agreed. I told the man behind us to go ahead, but he said he could wait. The woman took our picture. I paid the check, and we headed home.

Typically, I would turn on the news after we are home, but I didn’t last night. It had been an unusual day for Kate. She seemed very tired. Her speech might have been a little better than it was in the morning but not significantly. I thought it was a good time to refocus her attention. I went back to YouTube. We watched a playlist we had seen before and liked. As it did the night before, the music captured her attention from the time I turned it on until I turned it off.

Even better is the fact that today (as of 2:45), I haven’t seen any of the same symptoms that she displayed yesterday.

Music and More

Not long after Kate and I returned home from dinner Sunday night, Kate started working on her iPad. She quickly found it too difficult and directed her attention to her hair, her toes, face, and legs. I’m not sure exactly how to describe what she does, but it reminds me of a cat that preens itself. She began by pulling her hair. I turned on the TV to one of the NFL games with the sound muted.

I didn’t watch much of the game. She wanted me to watch what she was doing. That is becoming increasingly common. A couple times in the past, she has said she wants me to make sure that she is “doing it right.” I don’t know what that is, but she thinks I do. That’s what matters. After half-heartedly watching as I also tried to catch some of the Steelers/Ravens game, she wanted me to be an active participant. I had the distinct impression she wanted my help this time to keep my attention on her. Several times, she sternly said, “Are you watching me?” One time she caught me when she said, “Tell me what I just said.” I hadn’t really had a chance to get wrapped up in the game, but I admit to giving both the game and Kate my divided attention.

I tried to be obedient when she asked me to do the things she had been doing, but she sensed my lack of enthusiasm. She wasn’t happy. I was ready to take a shower, but she wanted my help. I needed something to redirect her attention and shift her mood. Not surprisingly, I thought about music. I suggested that I look for something on YouTube.

One of the first things I saw was a video entitled “Saint Paul’s at Christmas.” I assumed it was one of their Christmas concerts. I reminded Kate of our celebrating Easter Sunday at Saint Paul’s on a trip to England quite a few years ago. I told her how much we had enjoyed the music that day and suggested this might be fun to watch.

It took only a few minutes to discover that it was actually a documentary that focused on the preparations required to manage all of the different Advent and Christmas events. That led me to tell Kate that it wasn’t a musical performance (though there was some music in the program) and asked if she would like me to find something else. By the time I asked, she was already engaged and didn’t want to change. I watched with her a short time. Before leaving to take my shower, her eyes moved periodically between the TV and me. She made sure that I was watching. When she saw me on my iPad, she told me to watch the TV. It was an interesting documentary that included the beauty of the Cathedral itself and the preparations of the choir, but I finally got up to take my shower. By this time, she had gotten in bed to continue watching. She was sitting up. That was a good sign that she was interested in the program. I know it was far too complicated for her to have understood, but she enjoyed it. Her mood had changed significantly.

It was just ending when I finished showering. The video that followed it was an Andre Rieu Christmas concert, most of which was filmed at his home in Maastricht. It is a magnificent home that was beautifully decorated. The concert was outside with abundant and colorful decorations and lighting. I thought the concert itself was the best I have seen in a while. Kate and I watched the whole program sitting up in our bed. Both of us loved it.

The video ended at 9:40. It was time for me to say good night and past time for Kate; however, the next video was the New York Philharmonic playing Dvorak’s Symphony “From the New World.” It has been a favorite of mine since playing it with my high school orchestra. Kate and I have attended many symphony concerts in the past, but she is not generally as taken with orchestral concerts. I started to turn it off. Then I suggested we just watch a portion of it. To my surprise, Kate was immediately taken with it. We watched to the very end forty minutes later. I suspect the video enhanced her appreciation of the music. Of course, the music was also familiar to her. That surely helped, but knowing why she was so enraptured doesn’t matter. She had just spent almost a full three hours enjoying a documentary, a Christmas concert, and a popular symphony. She was happy. Once again, music played a key role recovering from what started out to be an unpleasant evening.

An Unusual Breakfast for Kate and for Me

Saturday morning Kate did something she has never done before. It was a few minutes after 7:00. I was about to fix my breakfast when I heard her say, “Hey.” I went to her and asked what I could do for her. She asked if we had anything to eat. I told her I could get her a breakfast bar. She didn’t know what that was. I took her to the bathroom. Then she wanted something to wear. Knowing it was early and that she would probably want to return to bed, I got a robe and helped her put it on.

Then I made a decision to do something very different for us – even before Alzheimer’s. I set a place for both of us at our kitchen table. I gave up the idea of cooking eggs. I opened a package of granola and poured a little into a bowl for each of us. I gave her a breakfast bar, a banana, and a glass of water. I know that we have eaten breakfast together when traveling, but I can’t recall our ever doing so at home. We didn’t have any milk, so we ate dry granola. She was quite relaxed and ate everything I gave her. As far as the food was concerned, nothing was special.  It was, nevertheless, a pleasant and very special moment for us.

Apart from our eating together, I had one other surprise. I had already poured a glass of V8 juice before she called me to the bedroom. She hasn’t cared for V8. For a long time, she drank apple juice in the morning with a cup of yogurt. I looked in our somewhat bare pantry and found a bottle of apple juice that had expired in November of 2018. Then I told her I had only given her water because I new she wasn’t a fan of V8. She didn’t remember what that was and said she would try it. I gave her a small glass, and she drank the whole thing.

There are other things like that. For example, she has always wanted butter and not oil with her bread. At two of the restaurants we frequent, the servers Know to bring us both. She recently asked me what “that” was. I told her it was olive oil and herbs, and I used it for my bread. She tried it and liked it. Similarly, she has never liked onions except in French onion soup. Now she eats onions if they are cooked with her food. She doesn’t recognize that she is eating onions although she still rejects raw onions. A similar surprise is that she sometimes eats her sweet potato fries without ketchup.

Except for a few moments of confusion, the past few days have been very pleasant ones for us. For several mornings, she has been in a cheerful mood. That has made it easier to get her up and help her with bathing and brushing teeth. I don’t mean to suggest that there has been any overall improvement in her memory, but she has not been concerned or depressed about it. She depends more heavily on me, and, for the most part, has been following my lead. It’s a bit like having a mini-vacation within the context of caregiving.

Changes Abound

This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.

Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.

Kate  more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.

Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.

I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.

She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.

Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.

Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.

I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.

Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.

There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down.  All of you.” (Chuckles)

She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.

Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”

She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.

Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.

Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.

She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.

She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.

As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.

She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.

Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.

A Christmas Afternoon Conversation

Kate and I had just returned from a late Christmas lunch around 4:30. We went to the family room, and Kate asked what she could do. I told her I could read something to her or she might like to look at one of her family photo books. She was unsure. I picked up a photo book of her father’s family and suggested we go through it together. I handed it to her and let her look for a few minutes while I brushed my teeth.

When I returned, she was looking at the first page. She told me she didn’t know anything. I told her I would help her. For about ten minutes we went through a few pages with my commentary on the people and places. She said she was interested but this was too much for her. She couldn’t absorb or remember anything. I suggested that it might be a good time for her to take a break and just rest. She said, “Let’s just do a couple of pages.” I agreed, but she stopped me again to say it was too much. This time she accepted my suggestion to rest. We closed the book and began an interesting and touching conversation that I was able to record. I have transcribed the beginning portion below.

Richard:         So you don’t remember anything right now.

Kate:               No. <pause> No. I don’t.

Richard:         Do you remember anything about your mother?

Kate:               No.

Richard:         What about your daddy?

Kate:               You know, right now, I just can’t even (Trails off)  This is so much to remember. It’s just too much right now.

Richard:         You know what you do remember though, I think? You can tell me if I’m wrong. You remember that you liked your mother very much. Do you remember that?

Kate:               No.

Richard:         You don’t?

Kate:               But that would be wonderful thing.

Richard          Do you remember what a nice and great woman she was?

Kate:               I don’t know much about her. I hardly know anything about her. I know I’ve been told, but I <slight pause> I mean, I must have, must have, but I have no (Trails off)

Richard:         No memory.

Kate:               This is why I don’t want to go too fast, and  I’d rather just go (Trails off)

Richard:         We don’t have to hurry at all. There is no reason to rush.

Kate:               Well, see, uh, that’s, that’s good.

Richard:         There are a couple of things I’d like you to know from me.

Kate:               All right. If I could tell you, I will.

Richard:         No, I just want to tell you something, and it’s the way I, it’s something I feel. One is that I love you very much.

Kate:               I love you too.

Richard:         Second is I want you to know you can depend on me.

Kate:               I think so too.

Richard:         I will help you with anything you need – anytime, and I believe that you know that I will.

Kate:               Oh, I know. Definitely.

Richard:         We’ve always cared for each other.

Kate:               Yes, we have.

Richard:         And we always will.

Kate:               That’s right too.

Richard:         You know, it takes us back to our wedding vows, doesn’t it? We said we would always stick together. For better or for worse.

Kate:               And we have.

Richard:         And, fortunately, its been mostly, almost entirely, the better for us. Hasn’t it? Haven’t we been fortunate?

Kate:               Oh, yes, yes, yes. I don’t remember much of it, but, you know, I’ve never had an anybody that . . . No <pause> no problems, they were all. I mean I don’t remember in (Trails off)

Richard:         You’re right. We just have had good times. We enjoyed the places we have lived. We enjoyed the people we’ve met. We’ve enjoyed our experiences in our work and going to school. You know, one of the things you enjoyed most was being a church librarian. It was one of the most fulfilling things (for you), and, you know, you did a good job. You helped so many. . . You’ve led a fulfilling life.

Morning Hallucination

As I was finishing my previous post, I heard Kate talking on the video cam. I walked into the bedroom and saw that she was lying on her side facing my side of the bed. She seemed to be watching something that moved from place to place. She said something like, “I see you. There you are,” and she moved her hands from one spot to another as if she were trying to catch whatever it was.

She saw me and smiled. I told her it was nice to see that smile. She looked at my shirt, and said, “I like that. They have them every year.” It was clear to me that she was having one of her “dreaming while awake” experiences. Maybe it’s better to say she was hallucinating. I stayed with her a few minutes and then asked if she wanted to get up or rest a little longer. She said, “I think I’ll just stay here a while.” I told her I would be in the kitchen if she needed me.

She continued to talk off and on for the next fifteen minutes or so. I haven’t heard anything for a while. She must have fallen asleep.

Feeling Grateful at Christmas

It’s 8:30 this morning. I’ve been up and had breakfast and a morning walk. Kate is still asleep. If she doesn’t wake up before 11:00, I will wake her. I don’t know what to expect, but I do know that we had a great Christmas Eve, the day and the evening. I am grateful.

Following the previous morning, I was relieved that she greeted me with a smile when I woke her yesterday. That set the tone for the whole day. Getting dressed and ready for lunch went smoothly. We were a little later than usual for our lunch. The restaurant was packed and noisy, but we got the last available table. The hostess had made miniature pecan pies and gave us a small bag to take home.

We were back at the house around 2:30. Kate rested while I took care of a few household chores. Then I read her a few chapters of Charlotte’s Web. This is our second time to read it, and we have only a couple of remaining chapters.

We had dinner at Bonefish Grill and were surprised when the hostess took us to a table with a Poinsettia and a present our server had brought for Kate.

From there we went to a Christmas Eve service at our church. I think it’s been about twenty years since we attended this service because we have been with our children for Christmas. It was good to see people we hadn’t seen in a while. We took a seat beside the man who served as director of music for over thirty years. I re-introduced him to Kate and seated her beside him. She couldn’t remember him. As we waited for the service to begin, she said, “I know I’m supposed to know you, but what is your name?” A few minutes later, she she said, “What’s the name of this church?” She didn’t understand his answer, and I told her. The music was beautiful, and Kate was moved by it. There was a part near the end when the congregation joined the choir in singing several carols. She sang along enthusiastically.

Once we were home, I turned on one of the many Christmas concerts that have been on televised. That turned out to be a fitting end to what was a very good day.

A Difficult Morning

I have often said that I am able to lead Kate to a recovery whenever she has challenging moments. Most of those involve her confusion in the morning. More recently, she seems more frightened by sudden noises like those we hear at restaurants. She is also more irritable. I attribute that to her not understanding or anticipating my intentions when I help her. Yesterday morning all of these came together.

It began when her overnight underwear (pull-ups) failed. I was in the kitchen and heard her say something. She was upset. When I asked if I could help she said, “Get me out of here.” I got her to the bathroom. As I helped her get cleaned up and brush teeth, she alternated between wanting me to tell her what to do and resisting my help. As she usually does, she got tears in her eyes and apologized to me several times. While we were standing at the sink, I put my hand on her arm. She shrieked as though I were going to harm her. I asked why she was so upset. She cried and said, “I don’t know. I don’t know.” I believe that was a very honest answer. She really doesn’t know why, but she still feels she shouldn’t respond to me this way. I tried especially hard to respond in a gentle, caring way to comfort her.

Several times she said, “Why did you bring me here? I just want to go home.” I told her I would take her home. Then I got her dressed and took her to Panera for a muffin. Once we were in the car, she seemed fine. She even spent more time on her iPad than usual. In fact, we would have stayed longer except that it was almost time for the sitter who comes at noon on Monday. She didn’t mention going home again. The sitter came a few minutes after we got home, and Kate was just as natural with her as she is with me. I felt good as I left.

Looking back, I see the only difference yesterday morning from other challenging mornings was how upset Kate was. I don’t believe it lasted any longer than other mornings when she is confused. It does reinforce my belief that remaining calm with her and easing her into her daily routine brings about her recovery.

I hope this will continue, but I know I can’t be sure. I am reading a memoir written by a doctor who cared for his wife who had Alzheimer’s. I have identified with him in a variety of ways, especially his desire to care for his wife in such a loving way. Last night I read a section in which he relates the severe anger that his wife experienced in the late stage of the disease. Is that ahead for Kate? As they say, “only time will tell.’

Our Visit with Ellen

Yesterday’s visit with Ellen was different than usual. As I think about it, the last few visits have been a bit different. I looked back and know that I made a similar comment in September. Both Ellen and Kate are changing. I have come to accept that I can’t predict Kate’s behavior as well as I used to. It is only natural that our visits will also be unpredictable.

Ellen lives in a facility dedicated to memory care and is divided into three “neighborhoods,” each with about twelve residents. They are free to move about from one neighborhood to another during the day but not outside the facility itself which is locked. We usually find her sitting in her wheelchair near the lounge with a television or in the dining area. Last time and again yesterday, she wasn’t in either place or her room. We asked one of the staff if they had seen her. She left to find her. In a few minutes, she returned with Ellen. Although she has been in memory care for two years, she has always recognized us. This time she was unusually excited to see us.

We pulled her up to a table and took our seats. We had only talked a few minutes when she tried to tell us something that we couldn’t understand. I finally understood that she wanted to go back where she had been. It seemed very urgent. We offered to take her, but she wanted us to wait and said, “Back in twenty minutes.” After she was gone, I looked over at the staff member who had brought her to us and explained that she wanted to do something in the other neighborhood. She offered to go get her, but we told her we knew our way around and would find her.

A few minutes later, we found Ellen in her wheelchair beside another staff member who was on the phone. Ellen seemed eager to talk with her. The three of us chatted while the staff member continued her conversation. We were able to gather that Ellen thinks the world of this person but never learned why she wanted to see her so much right then. When she got off the phone, she told us she needed to tend to something else. The three of us headed back to Ellen’s neighborhood.

On the way, Ellen appeared to be looking for someone. I think it may have been the staff member she wanted to see before. As we passed by the clinic, Ellen stopped and opened the door and looked in. Two or three staff members were there, and the one Ellen was looking for came out. She nicely explained that she had to take care of something and walked away. At the same time, I saw that someone else was delivering ice cream to each neighborhood for their afternoon treat.

We went back to Ellen’s neighborhood and sat together at a table where all three of enjoyed our treat. We talked a little while before Kate looked at Ellen and said, “We’re going to have to leave now. Then a visitor we had seen on one other occasion stopped by and introduced himself. There was a woman with him whom I assumed was the person he was visiting. That began a lively conversation, at least between Kate and the man and the woman and me.

When we finished, Kate looked at me and said, “I want to go home.” I knew it was time. We had been there an hour and twenty minutes. That was probably our shortest. We are usually there close to two hours. We recently went over that time when the music lady was there. We were all enjoying the group singing and dancing.

The drive home was not pleasant. It rained all the way, and the traffic was heavy. As sunset approached, it seemed unusually dark. The traffic was moving at seventy or more when a message popped up on the dash, “Passenger Seat Belt Unbuckled.” I looked over to see that Kate disconnected it and was letting it ease back into its stored position. I told her she needed to put it on. She didn’t know what to do. I explained that I couldn’t drive and help her. She asked me where it goes. I put my hand on the connector and touched her leg to show her. She still didn’t know what to do. I pulled onto the shoulder and got her fastened, and we were off again. We were back in town by 5:30 and stopped at Panera for quick bite. I was glad to be off the road and home.

I don’t intend to stop our visits to see Ellen, but the challenges are increasing. Except for the initial greeting, I’m not sure Ellen enjoyed it that much although she didn’t want us to leave. I’m going to keep an open mind about the future.

From Nashville

Yesterday afternoon Kate and I drove to Nashville for a visit with our friend, Ellen Seacrest, who is in memory care following a stroke four years ago this past August. Except when she has been in the hospital or rehab, we have visited her approximately every 4-6 months. As her condition and Kate’s have declined over that time, I have been mindful that we may reach a point when it no longer seems best for us to continue.

Thus far, I haven’t felt that the visits would end soon, but the visits over the past year have brought about a few changes. Ellen’s ability to speak has declined very significantly. We can only understand about 10% of what she says though she seems to understand us. Music has been an important part of Ellen’s life. In the early part of her career, she was a music teacher. She also served as a church choir director for forty years, started a children’s choir in Knoxville and led it for 15-20 years as well as being actively involved with the musical community. That led me to think about entertaining her by playing YouTube videos of a wide variety of musical performances. That worked well for a while, but we are doing that less now. Ellen seems to tire when passively watching the videos for any length of time.

One might think that a primary reason for reducing or ending our visits would be a direct result of Ellen’s and Kate’s abilities to benefit from these visits. That is clearly a possibility. When we began, they remembered each other without a problem. Ellen still seems to remember us without any difficulty, but Kate’s memory of Ellen has faded significantly. I have had to explain who she is for over a year, maybe two. Once they are together, however, Kate responds with some recognition even if she might not recall Ellen’s name or the experiences they shared for so many years. In this respect, it is like her memory of me. Her not recognizing me by name or relationship is quite common, but, with very few exceptions, she has a sense of closeness and a good feeling about me.

It’s not Kate’s memory or Ellen’s inability to speak that I see as the principle factors that might end or reduce our visits. Before they become issues, I believe we are going to be affected most by the difficulty of traveling. When we started, it wasn’t challenging. It was a relatively simple day trip. We left Knoxville in the morning and returned later that afternoon or evening. When Kate started sleeping later, we left later and got home later at night.

I adapted to that by leaving after lunch and arriving in Nashville late in the afternoon, having a nice dinner, and staying overnight in a hotel. That allowed Kate to sleep late on Sunday as well. Then we could have lunch and go directly to see Ellen. Our visits have been ending about 3:30 or 4:00. That allowed us to get back to Knoxville at a decent hour. We have followed this routine the past six to eight months, and it has worked well.

Our experience this time causes me to think again about future visits. The past few weeks I have felt the effects of the increased responsibilities I have for Kate. That coupled with some of the routine demands of the holiday season have kept me busy. I found that packing for the trip was more challenging. I had more things to think about and was simply more rushed than usual.

On top of that getting Kate in and out of the car and into a restaurant is not as easy as before. That was complicated this time by the weather. She is very sensitive to many things, and that includes the weather. We devote a good bit of time getting her coat and gloves on and off. We have lost lots of gloves in the past, and I have been working hard to keep them in her coat pockets when she isn’t wearing them. Even putting on gloves  is not as simple now. I have found the best way is for me to pick one of the gloves and hold it out in the exact position it should be in to put on the appropriate hand. I am zipping and unzipping her coat now as well.

Her sensitivity is not limited to the weather. When we arrived, I had arranged for a “mobile key.” When the system works, it is a nice feature. We don’t have to check in at the front desk. We go directly to our room. This was our third or fourth time to use it. We have had a problem each time. On our previous visit, we got to our room and found that the door wouldn’t open. I called the front desk, and they sent someone with a regular key that worked fine.

After our previous experiences, I still wanted to try again. I didn’t receive the key at all, so I stopped by the front desk and got a regular key. I didn’t think at all about Kate’s reaction to this. These problems have never affected her before. Not so this time. As we walked to the elevator, she complained about the hotel. That changed her mood and influenced her whole impression of the room. She wanted to know what we could do. I told her I had brought a couple of books that we might read (Charlotte’s Web and The Velveteen Rabbit), or her “Big Sister” photo book, or she could work puzzles on her iPad. She wasn’t interested. She just wanted to “get out of here.”

I suggested that we go downstairs, get something to drink, and go through her photo book. That’s what we did. We went to the restaurant and sat at a table where I could pull up a chair beside her. That worked fine except for one problem. There were a couple of young men at the shuffleboard table. She was frightened by the noise of the pucks. We moved to a table that was as far away as we could get. That helped some, and we spent about forty-five minutes looking at the album. She enjoyed it; however, it wasn’t the same reaction she usually has. Several things accounted for that – her mood, her difficulty seeing, and the noise from the shuffleboard table.

I suggested we go back to the room and get ready for dinner. We had a nice dinner. She got along well. When we walked in the hotel, she immediately commented on how nice it was. This is one of the good things one might associate with not having a memory. She was tired and worked a few minutes on her iPad before retiring for the night.

At 2:30 this morning, she woke and needed to go to the bathroom. When we returned to bed, she asked about “him” and “the baby.” I didn’t understand at first, but she said a few things that gave me a clue. These included “Did the baby come yet?” I told her it had. She asked if it was a “she” or a “he.” I told her it was a she. She was excited and added it wouldn’t have made a difference if I had said, “he.” She asked where he was. I assumed she meant the father and told her he was at the hospital. She asked when we could see the baby. I told her “tomorrow.” She wanted to know why we couldn’t see her today. I said, “It will be today, but since it was still the middle of the night, I said tomorrow.” We repeated this conversation multiple times for the next forty-five minutes or an hour. Periodically, I told her I thought the best thing we could do was go to sleep. She finally did. Until 5:00, that is. She wanted to go to the bathroom again. The baby did not come up this time. Instead she was focused on where we were and why. That lasted only a short time before we were both asleep again.

I got up just before 7:00. After I dressed, she woke up. This time I suggested she go to the bathroom. She went but was very confused. She told me she was “so glad you are here with me.” When I got her back to bed, she went to sleep rather quickly and is still sleeping at 10:00. If she doesn’t wake up sooner, I will get her up around 10:45 for lunch before going to see Ellen.

To be sure, Kate is just as confused at home. That alone would not cause me to end our visits, but there are added complications when we are out of town. I’ll be watching more closely to the way things go the next couple of trips and hope we can continue longer. I say that not only for my desire for us to stay in touch with Ellen but also because it has implications for our visits to other friends who live here as well.