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Is It Really Possible to Have a Good Day During the Late Stage of Alzheimer’s?

I am frequently concerned that I paint too rosy a picture of what living with Alzheimer’s is like for us. We, especially Kate, experience challenges, frustration, and stress. I don’t know how we could live with Alzheimer’s any other way; however, I believe it is important to communicate the good things that we can still enjoy. Yes, we can even have a “Good Day” at this stage of the disease. I always feel the need to reiterate that doesn’t necessarily mean that Kate’s memory is better or that she isn’t confused. I mean that we have enjoyed, not just a moment, but the day.

Yesterday was one of those. Several things may have accounted for that. She awoke in a good mood. In addition, we were not rushed at all. Her insecurity is also increasing. She seemed more dependent than usual. Finally, we talked a lot about our relationship and our love for each other.

She was also up early again, and we went to Panera and returned home for her to rest an hour before leaving for lunch. It was a very leisurely morning. We went to the Sunset Café for lunch. It’s a cut above most of the other restaurants we visit and they always save a corner table in the bar for us. It’s a quiet place and seems a little more private because the bar is quite small, only three other tables, and not very active at lunch. The setting makes it easy to engage in conversation. Kate and I took advantage of that. We have been eating there for several years and have gotten to know the hostesses, several servers, and shift managers, all of whom stop by our table to say hello. It provides the kind of social occasion Kate can easily handle.

When we returned home, she wanted to rest and did so for almost three hours before we got ready for dinner at Casa Bella. They were having a repeat of the Broadway program we heard last week, so I thought it might be nice to eat  in the front section of the restaurant away from the music. This is where we had eaten most often before they started their music nights. We have shared happy and sad moments there over the years. Last night was one of the happy ones.

We talked almost entirely about our relationship, our families, and how much we have to be grateful for. We also dealt with how we would feel if we lost the other through death. We do this periodically. Both of us feel we would like to die first so as not to live without the other. I feel good when we are able to talk about these things because I often think about her death and know that the odds of my living without her are significantly higher than the other way around. Of course, she doesn’t know that which magnifies her fear of my dying first and leaving her alone. She is very insecure now. She recognizes how difficult it is for her to do anything on her own.

Some might take this kind of conversation to be sad. It is, but there is another side to it. When we talk like this, we also feel very close. Each of us recognizes the depth of our love for the other in a way that doesn’t occur in the course of our daily routine. Of course, we approach this topic from different perspectives. I have a better idea of what is ahead for her. On the other hand, she is keenly aware that something is wrong with her as well as her dependency on me. I believe that when we have discussions like this we are uniting in a way that strengthens each of us. Her trust in me serves to reinforce my desire to care for her, and she is comforted by my assurances that I will be with her all the way.

It could have been an ordinary day. We didn’t do anything extraordinary. But it was a day in which we focused heavily on what we mean to each other. That made it special. It was a “Good Day.”

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Nine Years Ago Today

Most people remember specific dates that represent something significant that happened in their lives. I have a number of those, our wedding date, Kate’s birthday along with those of our children, grandchildren, parents, and siblings. We celebrate dates like these, but there are also dates when something happened that we don’t think of celebrating. January 21, 2011, is that kind of date for me. Nine years ago today, Kate’s doctor delivered the news that she has Alzheimer’s.

At the time, the news was devastating, but we made a commitment to make the most of the quality time remaining to us. I had no idea how long that would last. Here we are nine years later and still able to enjoy life and each other. I am very grateful for that. I can honestly say that these years have been among the best of our marriage.

Today, however, I feel other emotions as well. They are more like the way ones I felt when she received the diagnosis. I am just as intent on making the most of our time together, but at this last stage of her disease, I am more than bit apprehensive. I know that we won’t continue to live the way we have the past nine years. We are at the beginning of the stage people imagine when they think of Alzheimer’s. Our quality time is going to be more limited. This doesn’t mean our experience of “Happy Moments” will cease. It is just that they will be different. Even in the past few weeks, I see the challenges increasing. I mentioned a couple of them in my previous post. Another one occurred yesterday.

Kate was just as tired as the previous morning, perhaps even more so. Off and on for an hour and a half, I worked to gently wake her before my efforts met with success. I began with some soft music and gradually changed to more lively music. The first two two or three times I went to check on her, she was sleeping so soundly that she didn’t hear me at all. That has never happened before. My reward was that she smiled when she finally responded the last time I tried.

She was slow to get up and wanted to rest a little longer after she was partially dressed. While she rested, we talked. She repeatedly asked my name and where she was. This was a time when she didn’t remember me as her husband, but she spoke very comfortably with me. She didn’t express any great surprise when I told her we were married, but that didn’t stop her from asking my name.

She was in a good humor and kidded me a good bit. While lying in bed, she wanted us to sing something. I sang Edelweiss, but she didn’t sing along because she couldn’t remember the words. She wanted me to sing it again. I did and then played it on our audio system. That way I could give her the words just before each phrase. She enjoys singing.  It was an unusual and pleasant way to start our day.

It was our day for the sitter. When she arrived, Kate wondered who was at the door. I told her it was “Cindy, your friend who takes you to lunch on Monday.” She didn’t remember her but was very nonchalant in her response. She greeted Cindy warmly and never hesitated about my leaving with her. I didn’t have Rotary yesterday and almost canceled the sitter, but I thought I could use the time. I have also wanted to strengthen the bond between the two of them. I have had the distinct impression that Kate favors the sitter who comes on Wednesday and Friday and has been with since our second week with sitters. I believe that continuity helps and hope we don’t ever lose her.

The rest of our day went well. Kate was especially taken with some YouTube music videos I played for her last night. That took the place of her iPad on which she had started to work puzzles but lost interest. It was nice to see her enjoying herself. She was still awake when I got in bed. We chatted briefly and expressed our love for each other.

I make a point of mentioning the challenges of getting her up, her confusion and failure to remember my name and our relationship along with the good time we had once she was up. This is a good snapshot of what “Living with Alzheimer’s” is like for us. As long as she is happy, we will continue to live well. I hope I am wrong about the changes I believe will occur in the coming year. Despite my expectations, I am very grateful for the good times we have had in the past and feel sure we will have more in the future. We have, indeed, been fortunate.

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Ken and Virginia’s Visit

Today is the last day we have with Kate’s brother and his wife. The visit has gone well. We have focused on being together. Except a short drive through the continuing care retirement community that we will be moving to next year, we haven’t done anything special apart from eating out. I was interested in learning more about Ken and Virginia’s move to a similar community this past November. They seem to have adapted well. In their case, it involved a change of cities. They are now closer to family. We have had time for conversation.

I was especially pleased when Kate and Ken had an hour or so to look through a book he had recently given her. It contains a large collection of photos of their hometown of Fort Worth. Virginia and I adjourned to the living room, so we couldn’t hear their conversation. The fact that they spent so much time was a good sign that Kate enjoyed it. This was right after returning home from lunch yesterday. That is a time she normally rests. They finally stopped because she was tired. Ken mentioned that she also began cry as he read and told her about several of the photos. One involved the deaths of a basketball team many years ago.

It helps that Virginia and Ken are sensitive to Kate’s need to rest and have gone back to their hotel an hour or two each day. They understand that she has to work hard to keep up with a group. We have followed our daily routine though she has gotten to bed later at night. I think it is good for her to have a little extra stimulation. I feel very strongly that she and Ken should make the most of this visit. The next one is likely to be very different.

The only concern I have had is maintaining Kate’s involvement in our conversation. Virginia and I are the talkers in the group, and we have dominated. There is a certain inevitability to this. The nature of the conversation has to be rather limited for Kate. I also recognize that she is approaching a time when it won’t be possible for her to join in a conversation no matter what the rest of us do; however, I don’t want her to feel excluded from the group.

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Cheerful Days

In many ways the past two days were like a lot of other days we have. The difference was that Kate was cheerful all day long. Both days she awoke early and was in a good mood.

As she got out of bed on Tuesday, she called me by name. I took her to the bathroom. Afterward, she wanted to go back to bed. I told her I would be in the kitchen if she needed me. I added that I would stay if she preferred. She told me it would be all right if I left; however, she looked as though she wanted me to stay. I told I would be glad to bring my things to the bedroom and sit in the chair beside her. That made her happy.

Instead of leaving when she fell asleep, I stayed until it was time to get her up. That worked well because she woke up periodically and saw that I was there. Several times we chatted briefly. When it was time to get her up, I asked if she was ready. She said yes. I didn’t rush her at all. I told her I would get some clothes for her. It was another fifteen minutes before I told her I had her clothes. She got up very easily. I the the gradual process helped.

It wasn’t long before the sitter arrived. I hadn’t mentioned that I was leaving and thought she might be uneasy as I left. That turned out not to be a problem. She greeted Cindy with a hug and wasn’t phased when I told her I would be going to Rotary. The rest of the day went smoothly as well.

Yesterday was Kate’s birthday, and I was hoping she might have another good day. My wish was granted. She never showed any excitement or interest in its being her birthday; however, she did appreciate the emails, cards, and calls she received. She was especially touched by two cards. One of those was from our daughter. Kate was in tears as I read it to her. The other was from our twin grandsons. She was taken by the cards design. It had a pop-up when she opened it. She was fascinated by it and looked at it for a long time.

The celebration continued at dinner last night. After I had given the server our order, Kate noticed shrimp on the menu. The server, whom I had told about her birthday, asked Kate if she liked shrimp. When Kate said she did, the server said, “I’ll treat you to a shrimp cocktail.” Kate has always loved that. Although her eyesight complicated eating it, last night was no exception. Several times she dipped the tail of the shrimp in the sauce and took a bite.

The day ended with phone calls from our children and Kate’s brother and his wife who will be here for a visit tomorrow. That should be good for her as well.

Our experience does not mean there was any improvement in Kate’s memory or her confusion. For example, yesterday afternoon while she was getting her hair done, I went to the ATM at the bank across the parking lot. The stylist told me later that while I was gone, Kate said, “Where is my, uh, boyfriend?”

As we prepared to leave home for dinner, Kate said, “Let’s get out of here. I wanna go home.” There isn’t a way to stop the fundamental symptoms of Alzheimer’s, but, thankfully, we are still able to enjoy ourselves. I am grateful for that.

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A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

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More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

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She Needs and Appreciates Me

I had just finished my walk and was getting ready to complete a blog post yesterday morning when I heard Kate’s voice over the video cam. I went to her. She said, “I am glad to see you.” I said, “I’m glad to see you.” Then I asked if there was anything I could do for her. She said, “Yes,” but she didn’t say what. She was pretty groggy. I asked if she would like to go to the bathroom. She said, “Not right now.” I said, “It sounds like you would like to rest some more.” She nodded. I started to say that I would be in the kitchen when she said, “Don’t leave me. I like you to be here.” I said, “How about my going to the kitchen and getting my things and coming back and sitting in the chair right here.” She that would be fine. When I returned, she thanked me for being with her and said, “You don’t have to say anything at all. You can if you want to.” She added, “You take good care of me. I don’t know how you do it?” It’s this kind of appreciation that gives me encouragement to do everything I can for her.

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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.

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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.

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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.