Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.

More of the Same

Yesterday was a day for the sitter, so I was eager to see if I needed to wake Kate for lunch. I didn’t. She got up a little earlier than I would have liked, but we didn’t have enough time to go to Panera. We went directly to lunch. She was very unsure of herself when she was getting dressed. I had gone back to check on her. She didn’t want me to leave until she had put everything on. This is another sign of her growing dependence on me. The past two days I have been putting her clothes out for her. She hasn’t complained. That tells me that she finds it helpful. It removes the burden of choosing what to wear, something she has always preferred to do.

As soon as we got home from lunch, she said she wanted to rest a while. She was in bed when Mary arrived and came to the bedroom to say hello. Kate greeted her warmly and expressed no discomfort that I was leaving. I came back an hour early yesterday to meet an electrician to fix an electrical outage in our bedroom. I was surprised to find that Kate was still in bed though awake. Mary said she had been there the entire time she was there. That was three hours. It is very rare for her to rest that long. It makes me think she felt uneasy with Mary. I don’t mean that there is a particular problem with Mary herself but that her comfort level is greater with me. This seems to be occurring with her growing dependence on me.

As soon as Kate knew I was home and that Mary had left, she had her iPad under her arm and was ready to leave the house. I told her we needed to let the electrician finish his work. He did that quickly. He found the problem was a short in our ceiling fan. I’ll need to buy a new one. He disconnected the fan to prevent any further problem. Although it was getting close to dinner time, we dropped by Panera for about thirty minutes.

We finished the day by watching another portion of Les Miserables. That seemed like the best part of her day. At least, it produces the greatest emotional response from her, and it’s all positive. I wonder if or when she will tire of seeing it. Until then, I find this a great way to entertain her for an hour or so. Last night, I actually stopped it because I thought she needed to get to bed to make it easier for her to get up this morning.

She asked my name several times yesterday. One of those came right after telling me she loved me. This is not the first time I have observed this juxtaposition of comments. It always surprises me. It is another good example of the difference in one’s memory of names from her feelings.

Memory Loss

Kate is moving quickly to a complete loss of names. At lunch and on the way home today, she quizzed me about my name, her parents’ names, and our children’s names. It isn’t as thought this is the first time, but she seems to be struggling even more now. I don’t mean that she expressed any outward frustration over her obvious memory loss. She didn’t. It was the whole nature of the conversation that made her efforts seem like a quiet struggle.

She began by asking my name. When I told her, she asked me to repeat it again. Then she tried without success. At one point, I said, “Could I ask your name?” She had to think a minute before answering, but she got it.

Then I asked if there were any other names she would like me to help her with, “like our children’s names.” She said, “We have children?” I told her we did and proceeded to tell her their names and where they live and about their spouses and children. Her eyes began to glaze over. I said, “I think I may be covering too much.” She nodded agreement.

When we got up to leave the restaurant, she said, “What is his name?” I didn’t know who she was talking about and asked her. She said, “The one you were talking to.” It had been about ten minutes since I had introduced her to someone I knew from UT and the symphony. She was frustrated and said, “You could help me if you just gave a straight answer instead of going off on these other things.” I backed off, and nothing more was said. This is not the first time I have asked her to explain something she has said. I don’t think she has ever explained. She just drops it. I think it is too hard for her to remember what she was trying to say.

On the way home, she told me that she wanted to take a nap when we got home. Sometimes she says this but forgets. Today she got in bed after brushing her teeth. She was in bed when the sitter arrived.

She continues to pick up things, mostly clothes, and take them in the car with us. Today she brought a wool turtle neck sweater and a pair of brown shoes. Getting out of the car a the restaurant, she asked about taking the sweater inside. I told her I didn’t think she would need it. She left it. When we got home, she asked if she should take the sweater inside. I told her that would be a good idea and suggested taking in her brown shoes as well. I brought in two decorative pillows from our bed that she had brought with her the other day.

This morning she had rummaged through one of the drawers in my bedside table. I didn’t see anything he had taken out, but I have recently found several things she has taken out of these drawers. My suspicion is thatn she  is confusing my table with the one she has on her side of the bed. That reminds me that the other night she got in bed on my side without any awareness she had done so.

Another Late Start

Kate slept late again yesterday. I don’t know when she would have gotten up had I not wakened her. That was just before noon. She stayed in bed another thirty minutes before I got her up. It was almost 2:00 by the time we got to Carla’s for lunch. It was so late that all of our regular servers were off duty. There were fewer customers as well. This may seem like a silly thing but our connection with our servers and bumping into acquaintances in restaurants have given us a sense of social connection. I don’t like to see that disappear.

We had appointments for haircuts at 3:00, so we went directly from the restaurant. We came home after that. We relaxed for an hour and then went to dinner. When we got home we spent some time in the family room where I watched the news, and Kate worked jigsaw puzzles. Then we retired to the bedroom where we watched a portion of Les Miserables. We had watched it a fourth time in the past five weeks, but I was curious to see if it had lost any of its appeal to her. It hadn’t. This looks like it could be my “ace I the hole” if (when?) she needs a boost.

My sense right now is that I will be looking for more stimulation for her as time passes. That is true for me as well. I’ve gotten so accustomed to our morning visits to Panera that I feel an impending loss of social contact. Instead of seven days a week, we are going two or three days a week. When we go, we arrive after the morning crowd has left. I have long expected that we would become more socially isolated as Kate declines. I hadn’t, however, expected it so soon.

A Change in My Morning Routine

I’ve been pretty open about my following a predictable daily routine. That’s especially true in the morning when I have the most control. After that, I seek routine but always bend to the necessities of the day. I find that I bend a lot more with the progression of Kate’s Alzheimer’s. Her recent changes and the summer weather have made a difference.

As long as I can remember my first order of business has been to eat breakfast. During the past four or five years, I’ve added a daily walk of 2 to 2.5 miles right after breakfast. Over the past few weeks, that’s changed.

I was initially motivated by the weather. The morning temperatures and humidity have been a little warmer than I like, so I decided to walk a little earlier. I tried that, but it was still too warm by the time I reached the mid-point of my walk. That led to what I previously would have thought to be the unthinkable – walking before breakfast. It took me a week to get fully adjusted, but it is working now. That first week I was so accustomed to beginning my other daily activities when I got back from my walk that I forgot to eat breakfast three times. It was only a little later in the morning that I felt unusually hungry. I quickly realized the problem.

One morning I was hotter than usual when I got home from my walk. I decided to cool off in the pool. I was only in the pool about twenty minutes, but I found it a nice way to end a walk, so that has become my new normal. I’m not sure how long I will continue that. I suppose that will be when the water is colder than I like. That shouldn’t be too long. In the meantime, I am enjoying the new routine. I think it may have some therapeutic benefits as well. I’ll say more about that in another post.

With Kate sleeping later than usual, the added stress as she declines, and the increase in the number of desserts we are now eating, I’ve increased the length of my walks. Instead of 2 to 2.5 miles I have gradually increased that to a little over 4 miles. Yesterday it was 4.5 miles. Today it was 4.6 miles. I’m stopping there.

Apart from its stress-reduction value, it also gives me more time for reading (listening). That is especially helpful with longer books. Now I am listening to A Gentleman in Moscow. It would take me 16 days walking my shorter route. My new one will allow me to do it in 12. I should also add that I have dropped almost five pounds. For the past couple of months, I have been five pounds heavier than I like to be. Burning more calories really helps.

A Rare Event

It is 4:45 as I begin this post. We arrived home from lunch shortly after 2:00. I can’t remember the last time that Kate has wanted to stay at home this long. This is really unusual. Almost an hour ago, I asked if she wanted to go to Barnes & Noble. She indicated that she was comfortable working her puzzles here in the family room. I have had a variety of music playing since we got home. She has enjoyed that. If we stay at home much longer, we’ll probably just go directly to dinner. Ah, just as I was writing that last sentence, she asked if I was ready to go. I told her to give me a minute, and I would be ready. I think we’ll go to Panera. It is close to our house and to the Thai restaurant where I was planning to go for dinner.

I should add that Kate did get up a little earlier than yesterday and did so without my waking her. It was a little late for Panera. We went directly to lunch where we arrived shortly after 12:30.

Except for one bit of confusion, she has seemed fine today. Before leaving for lunch, she picked up her night gown from our bathroom and gave me an expression and hand signal that I didn’t understand. I now think she was asking if she should take it with us. I told her she could take it to her room. She looked confused and asked me where he room is. I walked her to our bedroom door and pointed down the hallway and told her to turn left and walk straight ahead. There could have been some confusion because I said “your room.” In the distant past, we referred to this as her office. It is furnished as a guest room but has a desk and printer for her computer. Now it is the room in which she usually gets dressed. Most of her clothes are in the closet of that room as well as a dresser that has her undergarments and socks.

As she often does, she asked me questions about names during lunch. At one point, she said, “I’ll probably have to ask you again.” That is something else that she frequently says. Then she said, “I wouldn’t want to live without you.” That has a lot more meaning for both of us now than in the past.

One thing she hasn’t forgotten is TCU. Quite a few members of her family have gone to school there including the two of us, our son, and a grandson. She has very strong feelings of loyalty to the university. She has always been able to call it by name without any hesitation. There aren’t many other things that I can say that about.

All in all, we’ve had a good day. I’m expecting a nice evening as well.

Back to Normal

After the pain of Friday night, we were back to our new normal routine yesterday. I say new normal since Kate is sleeping later somewhat more consistently now. It appears that the new pattern is to sleep late a couple of days in a row. Then she gets up at a normal time the next day. If that pattern holds, she will probably sleep late again this morning. I woke her around noon yesterday. We went directly to lunch, arriving about 1:30.

We came back home where we relaxed over an hour. I got out a three-ring binder with photos of our children and grandchildren as well as Kate’s brother and his wife. I had also included several pages of information about us. It included basic family information like Kate’s parents and grandparents, her brother and his wife, and our children and grandchildren. There is also a section to which I will continue to add information. Right now it includes our dating, engagement, wedding, and honeymoon. First, I’m going to revise what I have. I’m going to format the information as an outline rather than a narrative. That will be easier for her to comprehend. I also don’t want to overload her. I think having little snippets of information is better than trying to tell a more complete story. Kate was interested in what I had put together. That made me happy. I wasn’t sure what to expect.

When we finished with Kate’s Memory Book, I picked up her Big Sister Album that Ken made and gave to her in the spring. It’s 140 pages with multiple photos on each page. She went through the entire album. For Kate, it was just like seeing it for the first time. I am struck by the fact that there are a few pictures that she always singles out as especially good. She loves the picture of Ken and her on the cover. It was taken when they were 6 and 3. I think the album is especially important for her right now when she is beginning to lose so many of her memories.

When we finished, we had about an hour and a half before dinner. We went to Barnes & Noble. From there we went to dinner and back home. We relaxed a while in the family room before adjourning to our bedroom where we watched a portion of Sound of Music. She was feeling tired and got to bed at 9:30. I got in bed shortly thereafter.

Neither one of us said anything about the previous night. We were back to where we were. This is a good example of the pattern of changes that occur over time. There is never an abrupt end of one thing and a beginning of another. That is the way it has been with names. She sometimes forgets names but remembers them at other times. As time passes, the forgetting becomes more common. Most of the time, she no longer remembers the names of our children, but sometimes she does. She is forgetting my name more than in the past, I see that it won’t be long until my name and hers will be lost.

This gradual process helps me adapt. I am bothered by the first signs of new things that mark the progression of her disease. Then I begin to adapt. Then something else happens. I try not spend a lot of time worrying about it, but I do wonder what our lives will be like 3-6 months from now. I hope that we will be able to make a trip to Texas for Thanksgiving with Kevin and his family as well as to Virginia to be with Jesse and her family for Christmas. It is still too early for me to know if this will work out.

I see the coming of a new morning routine.

Once again, I had to wake Kate this morning; however, it was a little easier to get her up than yesterday. Once again, to save time we went to Panera for lunch and got back just before the sitter arrived at 1:00.

Up until now, I have thought of her sleeping late as erratic. In fact, that’s what I said in the message to her doctor just yesterday. It now looks like we are in the process of a fundamental change in our normal routine. I have a feeling of regret about this. I feel for her as I know this signals a new stage of her disease.

I also feel for myself because it means reducing my own social contact. It’s been over two weeks since I saw one of my favorite acquaintances at Panera. For the past two or more years, he and his wife and Kate and I have shared a few moments of conversation almost every morning. He and I are quite different politically and religiously, but we both enjoy social contact and conversation. Both of us like to talk, but each gives the other a chance to speak. I miss him.

In some ways, I wish I had a sitter for the morning rather than the afternoon. The problem is that neither of our sitters is available for those hours. In other ways, it’s probably a good thing for me to have a block of time to myself. There are household responsibilities that I could take care of. I know I won’t have any problem finding productive ways to occupy my time. As time goes by, I might very well see that simply relaxing would be a productive way to take care of myself. Of course, I will also increase our in-home care. When that happens, I will be freer to get out.

Another Slow Start

At the moment, I am at Whole Foods where I am waiting for Kate who is getting her monthly facial. I always schedule these appointments at 2:00 to give her plenty of time to get ready. Today that was almost not enough. After getting up earlier than usual yesterday, she slept late again today. At 11:45, I tried to wake her. She was not eager to get up but not cross. She mostly just ignored me. I put on some music in the bedroom thinking that might provide a gentle wake up. By 12:15, she was still not up, so I reminded her of her appointment and that I wanted to make sure she got lunch first. That did the trick. She was up, but she didn’t move any more quickly than usual.

We went to Panera since it is close to both home and the spa. We arrived there at 1:25. I decided to save time by just getting her a muffin that she would be able to start eating right away while they prepared a sandwich and salad for me. I got sliced apples with my order so that she could have them. By the time we both finished what I had gotten, it was time to leave. We arrived at the spa at 1:59. I was glad that I never really had to push her. As she was getting dressed, I explained that we would have very little time for lunch and that she needed to get dressed if we were to eat at all. She responded very calmly and never changed her speed.

Earlier this morning, I sent an update on the patient portal for her doctor’s medical practice. Kate has a 1:45 appointment with him on Thursday. I conveyed the change in her sleeping habits although I am not expecting him to make any changes in her prescriptions. I definitely don’t want her to go back on Trazadone. That would probably exacerbate the problem. I hesitate to call this a problem, but it is a bit of one for me. It would be nice if I had a better idea of when she is going to get up. I had thought I was pretty safe making appointment for 2:00. Now it looks like that may be a little too early.

More than that, I think I am bothered by its altering my schedule. Since I get up early, I am ready to eat about 11:30 or noon. Waiting until 1:30 or 2:00 means we don’t have much time between lunch and dinner. That, too, is my problem. Kate is not at all affected by this. If this is something that becomes a regular pattern, I will probably make sure that I have something at home to tide me over until she can get up. Adapting to change is not something new. It will work out.

The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.