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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.

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Two Events That Brightened Our Day

Yesterday our pastor had invited Kate and me to lunch at noon. Normally, that would lead me to be concerned about Kate’s waking up in time to get ready. That was no problem since we had two of the work crew who installed our new windows  finishing a couple of things. They were here at 9:15. I let her know that one of the workers was in the house and suggested she take her shower and dress in our bedroom and bath. She got up easily which gave us time for almost an hour at Panera before meeting our pastor.

We had a grand time at lunch. Our pastor and his wife had just returned from a trip to Rwanda where their daughter is doing research related to post traumatic stress disorder. We enjoyed hearing about her work as well as their hike through a gorilla preserve. We also shared some of our favorite travel experiences.

After lunch, we went directly to our car dealer’s for a routine service appointment. They have a nice waiting area where we stayed while they worked on our car. I think Kate thought of it as another alternative to Panera or Barnes & Noble. I know at one point she said something about its being a very nice place.

We relaxed at home for an hour before going to Casa Bella for jazz night. The music was unusually good, and we had a guest from Houston at our table. She manages a project that her IT company has with the state of Tennessee. On a previous visit to Knoxville, she had eaten at Casa Bella and learned about their music nights. Normally, she would have flown back to Houston in the afternoon but stayed over a night for jazz night. She is an interesting person, and Kate always enjoys meeting someone with a Texas connection. She sat beside Kate. When she asked her where she was from she couldn’t immediately remember the city. I jumped in and said, Fort Worth. After talking with her a few minutes, Kate asked her where she was from although she had just finished telling us that she was from Houston. No one acted as though they noticed anything inappropriate. I suspect the couple with whom we always sit noticed since they are aware of Kate’s Alzheimer’s.

When we got in the car for home, Kate said, “It’s been a nice trip so far.” She often thinks she is in Fort Worth. I suppose that is what she was thinking.

At home, I stopped in the kitchen for a moment as Kate walked into the family room. She called to me. I went to her, and she said, “I’ll follow you.” She obviously didn’t know how to get to our bedroom. It’s possible that she didn’t even recognize that we were home.

Even with this confusion, we had had a nice day. I am very glad she can still enjoy so many things.

This morning she surprised me when she was ready to leave for Panera shortly after 10:00. She was holding a pair of socks in one hand. I said, “I see you have some extra socks.” She said, “I always need extra socks.” I needed to do a few things before we left and asked if she could work on her iPad while I finished up. After she was seated, she said, “Could you hold these” and handed the socks to me. I said, “Yes” and took them from her. We had  time to get to Panera where we saw several of our friends from a nearby Catholic church who are regulars. We hadn’t seen them in a couple weeks and had been wondering about us. I told them that “we” had been sleeping a little later recently.

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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.

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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.

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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.

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More Confusion

Kate got up without my having to wake her yesterday. We made it to Panera and also got her lunch there without any rush to get back home for the sitter. On the way there, she said, “What would you like me to call you?” I said, “Do you mean my name or my relationship to you?” She wanted to know my name. That occurred several other times during the day. I might not even mention it, but she was also experiencing more confusion yesterday. That and the changes in her sleeping tell me we are headed for the part of this journey I would like to avoid.

A few minutes before Anita arrived, I told Kate that I would soon be leaving for Rotary and the Y. She gave me a look of displeasure. I told her I didn’t like leaving her, but I appreciated her understanding. She seemed to accept that and asked what she could do. I told her that she and Anita could go to Panera or they could spend some time with her family photobooks. Her eyes lit up at the mention of Panera. She said she wanted to brush her teeth and asked me which bathroom she should use. I chose the one she uses most often.

She was still brushing her teeth when Anita arrived. I went back to tell her and to say good bye. Then she asked me if he could use the toilet. I may not mention it much, but one of the changes over the past few months is asking if she can do one thing or another. At first, I thought she was asking for permission. Now I am reasonably sure that she doesn’t trust her own judgment and just wants to know what she should do. Later in the day, she asked if she should take her nightgown with her to dinner. Most of the time she doesn’t ask. For example, on Sunday she brought two bed pillows with her when we went to lunch.

When I was about to leave for Rotary, I said goodbye and walked toward the door. She called my name. That’s a good example of the fact that she doesn’t always forget my name. I turned around to see what she wanted. She whispered, “Aren’t I going with you?” I reminded her that I was going to Rotary and that Anita would take her to Panera. She asked, “Can’t we follow you?” As usual, Kate was very cordial to Anita. I didn’t detect any sign of a problem with her. It’s just that she feels better when I am around.W hen I returned home, I found Kate and Anita trying to locate photos on Kate’s iPad. They had apparently found them while I was gone but couldn’t figure out how to get back to them.

Kate looked more confused during the evening. She didn’t display any indication of anxiety or concern about her memory, but she just looked like she didn’t know what to do next and wanted my guidance. She usually works on her iPad right after dinner. She started but quit in a few minutes. I think she is having more trouble operating her iPad and felt like taking a break. I picked up one of her photobooks. She enjoyed that. When it was time for me to take my shower. She returned to the iPad.  I suggested it was time for her to get ready for bed. She readily accepted that. I am now staying with her as she puts on her gown. She gets confused as to what to do. She frequently takes off the pants she has worn that day. Then she puts her night gown on. This was followed by putting her pants back on under the gown. Everything is getting more challenging for her. I am glad to help, but it is sad to watch her growing dependence.

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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.

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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.

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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.

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Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.