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There are always little surprises.

About an hour before we left for dinner Thursday night, Kate came into the family room and brought with her two pair of socks and a tube of toothpaste with a missing top. She pointed to the photo book her brother made for her and asked, “Should I take this?” I told her I didn’t think she would need it at Casa Bella. She said, “Okay” and sat down in a chair with her iPad.

As we were about to leave for dinner, she picked up the two pair of socks she had earlier placed on the table beside her. She said, “I want to take these.” I said, “Do you think you’ll need them?” She said, “Not right now, but I really want these black socks.” Then she added, “These white ones too.” I got up to go, and she said, “I think I had better go to the bathroom now.” She had the socks in her hand and said, “I want to keep these.” I put out my hand and said, “I could put them in your sock drawer.” She gave me a big smile and handed them to me. The tube of toothpaste remained on a table.

We had a very nice time at Casa Bella. This was not one of their music nights, so we ate in the smaller front section of the restaurant. Until we started attending their music nights the first, second, and third Thursdays of the month, we always ate in this section. It felt a little like coming home. Over the years, this is where we had come to celebrate special moments as well as to console ourselves when we needed to be comforted. It is very quiet and offered just the right setting for reminiscing. At one point in our conversation, Kate asked, “What is the name of this place?” I shouldn’t have been surprised that she didn’t remember the restaurant’s name, but I was. We’ve been coming here almost 47 years. We are here at least three nights a month. We know the family that owns it. As Kate’s brother, Ken, reminded me yesterday morning, she doesn’t usually remember my name and we have been married 55 years and had our first date a year and a half before then. I shouldn’t expect her to remember the name of the restaurant.

Both the strange behavior and the increasing loss of memory continue to mix with many aspects of her behavior that are perfectly normal. I suppose that is what throws me. Some things are as they always were while others are new. We can’t have things the way they were and are adapting to a new world.

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Confusion, Growing Dependence, But Happy Times As Well

Kate’s confusion continues and along with that her dependence on me. Despite her confusion over our marriage, we had a nice lunch. We had two brief social encounters with friends we hadn’t seen in a while. One was a former neighbor, the other a member of our music club. After lunch yesterday, we came back to the house for a little over an hour before we went for our hair appointments. During that time, we relaxed in the family room where Kate worked on her iPad. The music was relaxing. It was a very pleasant moment in the day.

After our haircuts, we were off to Barnes & Noble where we also saw a couple of friends who stopped at our table to chat. From there we went to Bonefish Grill for dinner. Once again, we saw several people we know from our neighborhood and had a good meal.

When we got home, we spent a little time in the family room where I watched the news. Then we retired to the bedroom for more of Fiddler on the Roof. After saying yesterday that Kate only puts down her iPad for Les Miserables, I noticed that she quickly became engaged with Fiddler. We watched for an hour during which time she never opened the iPad. Watching an hour or so of a musical she enjoys is becoming a good way to end the day. She enjoys herself must direct her attention away from confusion and loss of memory.

I am noticing more confusion at bedtime now. It is something that has been happening for a good while. It’s just that now she seems to be especially confused about getting ready for bed. That has obviously happened in the past when she has gone to her room to get a night gown and not come back with one. During the past few days, I have taken the lead and said, “I’ll get your nightgown.” She says, “That would be nice” or “Thank you.” There is no sign of independence. I think by that time of the day she wants what is the easiest thing.

I woke her at 10:40 this morning. I think she was about half awake anyway, and I would like for us to get to lunch before Mary comes at 1:00. She got up easily, but it was obvious that she was confused. She asked me what I wanted her to do. I told her she could take a shower in our bathroom. She asked, “Where is that?” I point to it and told her I would show her. I got towels out for her. She seemed very unsure of herself. I definitely feel better about her showering in our bathroom because of the walk-in shower. She has showered there every day since her fall last week. I feel we were fortunate that she didn’t hurt herself. The next day I asked her if she felt any pain from the fall. She didn’t remember the fall and didn’t have any pain.

Life is quite a mix of things right now. I suspect this is only the beginning. I am just glad that we can still enjoy time together. I would not have believed it 7 ½ years ago.

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An Interesting Mix of Confusion and Lucidity

At lunch, Kate and I had an interesting conversation. I only wish I could remember precisely what she said. I’ll do my best to capture the essence of it. It began when she asked my name. I told her and said, “I am your husband.” She was surprised and said, “You’re my husband?” I said, “Yes, did you think we were friends.” She said, “Buddies.” I told her we are buddies, but I am also her husband. Then I added that we have been married 55 years. She said, “No way.” She usually finds that hard to believe but accepts the fact that I have told her. This time she wouldn’t accept it. I mentioned it later during the meal. She still didn’t believe it.

Several times she poked fun at me and said, “I’ve been around you too long.” I found it interesting that she hadn’t remembered that we are married, and yet she retained the awareness that I often joke with her. Of course, this fits well with what I do know. People with dementia retain their memory of feelings about people, places, and things long after they have forgotten names and other specifics about them. A little later in the conversation she said something similar. She said, “You can relate to people who are different from you.” At the risk of being wrong with my own self-analysis, I would say that she is right.

Having said this, I still find it surprising when these seemingly contradictory things occur in such close proximity. On other occasions, for example, she might fail to remember that she has children and then say something about them that is true. All of these things are just further examples of how the brain’s circuitry gets scrambled for a person with dementia. That is hard for the rest of us to understand.

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Very Confused

Kate rested for 1 ½ hours after Anita left. I woke her up for dinner. She woke easily and didn’t show any signs of confusion. That occurred in the car on the way to dinner. We only went a short distance to Chalupas, but she asked my name at least three times, perhaps more. As we pulled into the parking lot at the restaurant, I told her my name and said we had been married 55 years. That surprised her. She said, “We’re married? Are you sure?” I told her yes, that we had married in 1963. As I pulled into a parking space, she said, “Are we legal?” I told her we were. She asked, “Who did this? You’re gonna have to explain this to me.” I told her I would once we were inside, and I told her about our first date, the wedding and her preacher who conducted the ceremony.

I could see that she looked very puzzled. Nothing I had said seemed to make any difference except she had some familiarity with the church and the preacher. She asked what we had been doing all this time. I told her about the places we had lived, the birth of our children, and jobs. When I mentioned our time at the University of Wisconsin in Madison, nothing rang a bell until I mentioned the English professor for whom she worked. She always liked him. I should add that during all of this she didn’t express any of the anxiety I have witnessed on several other occasions. She was just puzzled and really couldn’t remember most of what I was telling her. Finally, she was getting far too much information. She asked me to stop. Then she asked, “Does anybody else know about this?” I asked, “This?” She said, “All this that you have been telling me.” I told her our children know. She asked how they would know. I told her she had raised them and learned about the things I had told her. She said, “I didn’t raise them.”

I decided to go in another direction. I said, “There’s only one thing that matters. That’s us. We know we love each other and that we’ve had many great experiences. She agreed.

As I pulled into our garage, she said, “I like all this.” I said, “You mean our house?” She said, “This is our house?” Once we were inside, she said she wanted to go to the bathroom and to brush her teeth. I could see that she was unsure of where to go. I told her I would show her the bathroom and took her there.

We are now sitting in the family room where she is going through the photo book that her brother Ken gave her. I had gotten it out to show her pictures of our wedding. She recognized the photos and the church parlor where the reception was held. That seemed to settle her, and she has been looking through it for about twenty minutes or so.

I don’t ever recall another instance in which she was so confused, but she seems all right now. I’ll see what happens as we get closer to bed time. I am going to play one of our musicals to see if we can end on a high note again.

My personal reaction to the situation has been less sadness than a resolve to help her in any way that I can. She really needs help, and she trusts me. After giving my explanation of our courtship and wedding, she said, “That’s what I like about you. You just say it straight out.” I’m not exactly sure what she means by that, but later she said, “When you tell me things, I can understand them.” I don’t think this is quite true, but I sense her trust in me and want to be a supportive as I am able.

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A Schedule Gone Awry

If you read my previous post, you may remember that Kate rested for about two hours yesterday afternoon. That was after sleeping until 10:30 yesterday morning. Even though she had never had a problem before, I began to worry that she wouldn’t be able to go to sleep last night. We got to bed a little later. Kate was in bed at 10:00. I followed her at 10:35. Sometime after midnight, I heard her turn over and realized she was awake. I’m not sure that she had been asleep at all, but she was very wide awake and talkative. That led to a long conversation during which we both reminisced about our relationship, our children, her parents, our travels. These are all things that we talk about regularly. I don’t think there was a thing that was new including our agreement that we have been a very lucky couple.

Interlaced with the discussion were some of the usual questions about names. Early in the conversation, she mentioned how proud she was of our children. A little later, she asked if we have children. Then she wanted to know all about them. As she often does, she asked me to tell her where we first met.

Knowing that I was likely to be up early, I didn’t play as big a role in the conversation as I might normally do. I felt the need to get to sleep. Finally, at 2:35, I said something about going to sleep. She took the not-so-subtle hint and said she thought she would go to sleep as well. That’s the last thing I remember.

During our conversation, I had decided I would sleep late this morning. Habit got me. I was up at 5:35. I dressed for my walk, ate breakfast, and was out the door a few minutes after 6:30. I walked just over 4 miles and returned home at 8:00. To my surprise, I saw that Kate had gotten up. There are only a few times that she has gotten up that early in the past couple of years, and that was after a good night’s sleep. I was sure that she would sleep until I woke her for lunch. As it turned out, she was ready for Panera before 9:30. That is where we are right now.

The lack of sleep may be having an effect on her. She just asked, “What is your nome?” She knew that wasn’t right and repeated it. She still couldn’t say “name.” I gave her my name. Then she asked her name. Moments later she asked my name again. I just gave her my first name, but she wanted the whole thing. Then she said, “What’s my name again?” She asked where we lived. When I told her, she tried to say “Knoxville.” As she did with “name” earlier, she pronounced it in a funny way. All of this is not dramatically different from what goes on every day, but the look on her face and the way she is speaking makes me think she is more confused than usual.

Today is my Rotary day. That means the sitter comes at noon instead of 1:00. I like for Kate to get her lunch around 11:00 so that we can easily get back home in time to meet Anita. I have frequently had to call her and tell her to meet us here, but that won’t happen today. I suspect Kate is going to be tired. I’ll get her a sandwich in another twenty minutes. Then we’ll go back home. My guess is that she will take a nap.

After Rotary, I will go to the Y. That will keep me awake. I hope we will get our sleeping back to normal tonight.

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The Rest of Our Day

When we got home from lunch, we spent a couple of hours in our family room where I played three Rachmaninov piano concertos. Kate sat down to work on her iPad but was tired and decided to rest on the sofa instead. A little after 4:00, I began to be concerned that she might not be sleepy at bedtime. I asked if she would like to go to Barnes & Noble. She gladly accepted my offer.

She asked more questions in the car. She asked my name as well as those of her parents. Then she asked if we have children. After being seated at B&N, she asked, “Where are we?” At one point, she commented on how nice it was to have a place like this (B&N). She has said this once before. I’m not sure what prompted her to say this. She hasn’t said it about Panera or any other restaurant we visit.

From B&N we went to dinner at our favorite Thai restaurant. We always get a coconut soup as a starter and then one entrée. We’ve been getting the same soup for a couple of years or more. Tonight she was completely blank on the soup. She didn’t remember it at all, but she liked it as always.

Upon returning home, we finished listening to a radio interview from a Lubbock station. Our son, Kevin, was interviewed about caregiving and his work as a geriatric care manager. We were both impressed with how well he did. It wasn’t long after that when he called, so we were able to give him our impressions. After Kevin’s call, Kate asked, “Exactly, where are we?” I told her we were in Knoxville, Tennessee. She said, “So we’re close to Fort Worth.” I told her we were a long way from there.

Kate was ready to retire to the bedroom, and it was time for my shower. Before leaving the family room, Kate pointed her finger toward the back of the house and wave her finger right and left and asked, “Which way?” I told her to the left. She started to turn right when I redirected her.

She worked on her iPad for a while but has now turned in for the night. I told her I would be right behind her. We’ve had another good day.

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Our Day Yesterday

Sometimes Kate and I seem to move in opposite directions. As she sleeps later, I seem to be getting up a little earlier. Yesterday I was up at 5:00. That gave me enough time to have breakfast before leaving for my walk. I was still able to get out by 6:00 and took an unusually long walk, five miles. The past couple of weeks I’ve been walking between 4-4.5 miles. I walked a little longer yesterday when I got into two separate conversations with neighbors who also walk about the same time.

Kate and I spent less time together yesterday. I woke her up at 11:15 so that we could go to lunch together before the sitter came at 1:00. I had a scare while she was in the shower. I heard a scream and a thud. When I arrived, I found her lying on her back on the floor. She was unable to explain what happened. The shower was still on. She was wet and holding a towel. I plan to do what I can to get her to shower in our bathroom where we have a walk-in shower. That would be much safer. Fortunately, she was not injured at all and has not expressed any signs of pain so far. I’ll be eager to see how she feels this morning.

Because we were short on time, we went to Panera and arrived just after 12:30. I called the sitter and asked that she meet us there. There was no problem with the handoff to Mary. Kate was quite comfortable when I left. I finished my meal and went to the Red Cross where I donated platelets.

After I got home and Mary had left, Kate frowned and said she was glad to see me. I told her I had missed being with her. She said, “I got along fine. I just like to be with you.” A few minutes later, we went to dinner. We had a good time. She got our conversation started when she made reference to what great experiences we have had. Since she can’t remember them, I took the lead and filled in the specifics. I am glad she retains her feelings even though she doesn’t remember the details.

When we got home, I watched the PBS Newshour while she worked on her iPad. She was having difficulty. Over the past few days, I have noticed that she periodically forgets which icon to touch in order to open her puzzle app. This time, however, she wanted to look through the photos on her iPad but didn’t know how to do it. I set them up for her, but there were so many it was an overwhelming task. She gave up. I hope we are not approaching the time when she has serious problems working her iPad. That would be disastrous. That represents the only thing she does on her own.

I suggested that we adjourn to the bedroom and play the last part of Les Miserables. She liked the idea. That worked well, but we had finished by 8:15. I suggested that I put on something for her to watch while I took my shower. I selected Fiddler on the Roof. It seems to generate the most interest after Les Miserables. That turned out to be a great success. While I was in the shower, she called to me expressing her enthusiasm. Several times I heard her belting our “Tradition! Tradition!” I don’t recall her ever doing that before. After a while she was tired. I helped her get ready for bed, and she was asleep quickly.

I don’t try to count the number of times she asks my name, but I suspect it was probably ten times today. She tries so hard to remember, but I can easily tell that she never has it down even after I tell her three consecutive times. The good news is she seems to recognize me as her husband although I am never sure.

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A Second Chance Comes Sooner Than Expected

As I noted earlier, Kate seemed to be fine this morning. It was late, but we got to Panera at 11:00. That gave us hour for her to have her muffin and for both of us to relax. On the way to lunch, something happened that all of us can relate to. We worry about things that never happen or surprise us when least expect them.

As we were driving, Kate asked, “Where are we exactly right now?” I’m accustomed to the question and told her we were on the road in the northern part of Knoxville. She said, “Is Knoxville a city?” I told her it is. Then she asked my name. I told her and told her how long we had been married. As always, she was surprised how long that had been. I mentioned our children. She wanted to know their names. After I told her, she asked again. She seemed more confused than she normally does.

We drove a little further, and, for some reason, I brought up the fact that we had visited Ellen last Sunday. She looked very surprised and said, “We did? I don’t remember that.” I said, “Yes, we did.” Then she looked perplexed and said, “I should have remembered that. What’s wrong with me?” Since we had had a similar conversation just last night, it caught me off guard. I made a quick decision to tell her what was wrong.

I said, “You may remember that some time ago, we learned that you have Alzheimer’s. That affects your memory and is why you have trouble remembering things. The good news is that most of the things we enjoy in life don’t depend on memory. We enjoy listening to music, going to Casa Bella for their music nights, as well as our local theaters, and spending time with family and friends. Not only that, but you have me to help you with anything you need to remember. I will always be with you for that.” She still looked a little puzzled, but she did say how good she felt knowing she could depend on me to help with her memory. By that time, we were arriving at the restaurant where we had a good lunch and a delicious dessert.

When we arrived at home, she asked, “What now?” I told her that we could spend a little time at home and that we had several options. I mentioned that we could look at some of our pictures from our 50th anniversary trip with our family to Jackson Hole. I also said I could put on some music, and we could relax in the family room. She saw her iPad and said she would like to work on it. For a while we enjoyed Tchaikovsky’s Symphony No. 6 as she worked on her iPad. Then she said she was tired and wanted to lie down on the sofa. I put on some softer music to play while she rests. I am finishing up this post. After that I am going to bring in the clothes from the dryer to fold and put them up.

At the moment, all is well. I am glad I decided to remind her of her Alzheimer’s. This  time it seemed like the right thing to do. Maybe that is because I had thought it through. She seemed to accept it well. At least, she didn’t indicate any concerns about the long-term implications. Perhaps that will never come up. If it does, I will continue to emphasize the good things that we will continue to enjoy and that I will cover the memory issues.

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More Ups and Downs

Yesterday was a day of confusion for Kate. Once again, we had two bright spots that balanced the down moments. One of those came after we returned from her monthly massage. We went into the family room where I picked up the “Big Sister” album her brother, Ken, had made for her and asked if she would like to look at it. I was thinking specifically about the trouble she had been having remembering her family and thought this might jog her memory. It worked beautifully. I sat down beside her, and we went through the entire 140 pages. It brought back great memories. When we finished, she started over at the beginning. She must have spent a full hour and a half looking at the pictures and commenting.

It wasn’t long before it was time to get ready for another musical night at Casa Bella. The musicians, especially the male singer, have been longtime favorites for many years. They are a little younger than Kate and I, but they know the music of our generation. I don’t think there was a single number we didn’t know. It was another great evening.

After we were in bed and ready to go to sleep, Kate said, “What’s your name?” I said, “I’m Richard Creighton, and I am your husband. We’ve been married 55 years.” She said, “Are you sure? I don’t know you.” I assured her I was right, but she still wasn’t sure. She decided to test me. She asked where we got married. I told her. She was surprised when I mentioned the church. It was the one in which she grew up. She still wasn’t absolutely convinced, however, and looked a little suspicious. I told her I loved her. She almost always says she loves me. She didn’t this time. I asked if she loved me. She said, “I don’t know.” I reached my hand to touch her, and she moved it away. She was tired and wanted to go to sleep. She said, “We’ll talk about it tomorrow.” In a few minutes, I moved next to her and put my arm around her. She didn’t push me away. Neither one of us said another word.

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A Re-run of Last Night and More

On the way to lunch, Kate asked me my name. Nothing unusual about that. Then she asked her name. I said, “Kate Creighton.” She said, “Creighton? Where did that come from?” I told her she got that name when we married. She was surprised and said, “We’re married?” I told her we were and told her her full name in which I included her maiden name. She didn’t recognize it. I started telling her that was her family’s name as we arrived at the restaurant. When we got inside, I started explaining. Then she mentioned the name of one of her aunt’s. There was clearly a spark of recognition. At least one other time while we were eating, she asked my name again.

I mentioned something about our being married, and she said, “Do we have children?” I gave her their names and told her about them and their families including our grandchildren. It was like the first time she had ever heard about any of them.

When we got home, she asked, “Are you a cousin?” I said, “No.” She said, “A friend.” I said, “Yes, I like to think I am your best friend.” She said, “My husband?”