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Kate and Humor

Although Kate enjoys humor, she’s never been a kidder. I grew up with a dad who lived his whole life as a kidder. The week before his 100th birthday and two weeks before he died, a young staff member at his nursing facility asked what advice he had for someone who wanted to live as long as he had. He answered, “Don’t die.” He was a light-hearted guy who saw humor in just about everything. He was even a “cut-up” in the emergency room where we made any number of visits. I tend to be a more moderate version of him. That may be having an impact on Kate right now. I find that she teases me a lot as her Alzheimer’s progresses. Not being a kidder by nature, it often fails to come across as humor though I recognize it as such. I’ve had a few examples of that already today.

Out of the blue at lunch, she said, “Those are the ugliest glasses I have ever seen.” That’s the first time I recall her saying anything about my glasses. Usually, she comments about my nose. That has been something of a family joke. Dad had a moderately bulbous nose that seemed to be more pronounced as he got older. I inherited his nose and have been kidded about that before.

Kate also frequently says, “I’m glad I married you even though you’re not handsome.” As we were driving home from lunch, she said, “I think husbands should be handsome, and wives should be beautiful.” Then she added, “I compromised a little in your case.”

I tend to be careful about running a red light and often stop the moment the caution light appears. Kate has always thought I overdo that. Today, I went through a caution light when I could have easily stopped. I said, “I should have stopped. I could have.” She said, “You shouldn’t worry about it. You’re a good guy.” Then she said, “Who are you?” She wasn’t kidding this time. I told her, and she said, “Who am I?”

That leads to something else she kids me about, my last name – Creighton. She likes her maiden name (Franklin) better. She often expresses this preference when I tell her my name. She passed up that opportunity today. In fact, a few minutes later, she said, “I think it’s a good thing that women take their husband’s names.” I asked her why. That put her on the spot. She didn’t say anything for a moment or two. I could tell she was thinking. Then she gave me an explanation that seemed not to make any sense at all. I said, “So you don’t think it would have been good for me to take your name?” It became clear that I was going too far. She said, “Let’s not talk about this right now. This is getting silly.”

We’re back home now, and she is resting on the sofa across from me in the family room. I have a Chris Botti album on the sound system. It’s a beautiful day though warmer than I would like. It looks like we’ll have a peaceful afternoon.

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More Surprises This Morning

I got home from my morning walk at 8:00 and went to the pool to meditate. When I came into the house, I noticed that Kate had gotten up. I went back to our bathroom where I had everything prepared for her shower but found that she had not used our shower. I decided to let her get ready at her own pace and went back to the kitchen. Just before 8:45, I went back to check on her. She was walking into the family room dressed for the day. I was quite surprised for two reasons. First, She rarely gets up before 9:00 and recently been sleeping until after 10:00, often after 10:30. Second, it usually take her an hour and a half to get ready. I didn’t see any signs that she had taken a shower. That, too, is very unusual.

As she walked toward me, she held up a pair of socks and said, “I have extra socks.” We both walked to the kitchen where I had put her morning meds. Then she said, “Underwear.” When she wants or needs something she often just uses a single word, so I asked if she needed underwear. She did. That told me she had forgotten where she keeps her underwear. I got it and brought it back to her.

When she finished her meds, I was in the bedroom and heard her call my name. Once again, she was able to remember my name when she needed something. When I got to the kitchen, she held up the pair of socks she was carrying a few minutes earlier and said, “Look what I found.” I asked what she was going to do with them. She said she didn’t know. I asked if she would like me to put them in her sock drawer. She said she did, and I took them back to her room.

On the way to Panera, I said something and could tell that she preferred that I not talk. I said, “I’m not going to say another word.” She said, “We’ll see. You can’t help yourself.” When I didn’t say anything else, she said, “What do you know?” She obviously remembers that I am a talker.

When we turned into the parking lot at Panera, she said, “Surprise, surprise.” It was clear that she recognized where we were. Just before we got out of the car, she teased me about something. I expressed surprise. She smiled and said, “I guess I’ve been married to you too long.” Aha, she remembered that we are married.

We had arrived before 9:00. While we were seated at our table, she said, “Panera.” Then she beamed. She was proud to have remembered. Since she hadn’t gotten to bed any earlier last night, I figured that we might not stay there too long. About 10:00, she said she wanted to go. Then she looked at her iPad and asked, “Is this theirs or ours?” I told her it was hers. We got our things together and came home where she worked on her iPad a while and then rested about thirty minutes. We left for lunch a short time after that.

On the way to lunch, she asked me at least three times where we were. When we were ready to return home, she wanted to use the ladies room. Even though it is very close to where we sit, I have learned that it is best to walk with her. While she was in the restroom, I chatted with our server. I told her that Kate had been making a lot of changes in the past few weeks. She was surprised. She said, she couldn’t tell any difference at all. When Kate came out of the restroom, she had no idea where to look for me. Fortunately, I stayed within ten feet of the restrooms. I saw her puzzled look and walked over to her, and we left. On the way home, she again asked where we were. Right now her primary questions seem to be “What is your name?” and “Where are we?” Those must be the two most important things she needs to know. I can understand that. What is hard for me to understand is what it must be like not to know the name of the person with whom I have the closest relationship or the name of the city I am in.

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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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Kate changes. I change. Things don’t always work out.

As Kate has been sleeping later in the morning and also becoming more dependent, I have been making my own changes. I know that I have talked a lot about living in Kate’s world, and that it has worked. I’m not sure that I have also stressed that caregivers must also engage their rational abilities as well. That means shifting gears to solve or prevent problems. I’ll give you an example of what happened this morning.

It has become increasingly challenging for Kate to select her clothes in the morning. She has tried selecting them the night before, but she usually forgets some of the things she will need (e.g., her shoes, socks, a top, etc.). I decided to address this issue last week and have been selecting her clothes either the night before or in the morning before she is up. This has worked pretty well.

You may remember that she fell out of the shower last week. I decided it was safer for her to shower in our bathroom that has a walk-in shower. Some mornings, she chooses our bathroom anyway. This past week I caught her before she was about to use a shower in another bathroom and suggested that she use ours. That worked.

When she showers, she often uses several towels. That usually means at least two bath towels. In addition, she often uses one or more hand towels and, sometimes, the bathmat. When she finishes she drops or throws them on the floor or counter tops or whatever is nearby. That’s not a problem for me when she is using another bathroom; however, it conflicts with my OCD when she uses our bathroom. I try to keep all the towels, toothbrushes, and toothpaste in their “proper” places. That means a clean up after she showers. Since she doesn’t know which towels are hers, she often gets mine. To solve that I started keeping two on top of the counter directly across from the shower and pointed them out to her. Once or twice she has used at least one, but she still opens a drawer and pulls out one or two other hand and/or bath towels.

When I had the bathroom redone, I had two hooks installed inside the shower to hold towels. That way the person showering could dry off without opening the door. That gave me another idea. After my shower last night, I hung two bath towels for her on the hooks. In addition, I left the original two towels for her on the counter in case she wanted more. I thought I had it made. I had adequately addressed the problem, for me anyway. The shower issue was no problem for her. It was solely mine.

Now I can tell you the results I had with my little experiment. Kate went to bed earlier last night, so I thought about the possibility that she might wake up earlier this morning. I checked on her once or twice, and she was still sleeping. I got busy on my own things. When I checked on her again, I discovered that she had already showered and not in our bathroom, so I hung her towels back on the towel rack where they are normally kept. I can’t say that my plan for the shower didn’t work. I just slipped up and didn’t get to her quickly enough.

Next I noticed that she had left all the clothes I had put out for her right where I had put them last night. She had gotten out her own clothes except for a top. I went to her closet and brought one to her. I also got her a pair of shoes and socks. She suggested that I let her take care of the rest, and I did. When she was ready to go to Panera (yes, we were early enough for that), I noticed that she wasn’t wearing the top I had picked out. I didn’t say anything because the one she picked out was just fine. This often happens. I am never sure if she just didn’t want to wear the one I picked out or if she misplaced the one I had given her. I think both of those things happen from time to time. I don’t worry about this. The important thing is that she has a top to wear. However, it’s one more example of the things that I do to prevent a problem only to discover it didn’t work the way I intended. I’m just glad our problems are not bigger than this, except for her Alzheimer’s itself. That, of course, is the biggest issue we have faced in our entire marriage.

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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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New “Firsts”

As you have probably noticed, I try to be alert to changes as they occur. Over the past few weeks, I haven’t had to work hard to find them. We’ve had several small, but notable (to me anyway) ones this afternoon. The first occurred as we drove into the garage at home after returning from Panera. I told her that I would be leaving for Rotary and the Y and that Anita would be with her while I was gone. She asked, “Is she the baby sitter?” I said, “Well, I wouldn’t call her that, but she is someone to stay with you while I am gone just in case you need something.”

Up until that moment, I had never referred to Anita or Mary as “sitters.” To me that sounded too much like “baby sitters,” and I didn’t want to offend Kate. Apart from using their names, I just said pretty much what I said above, that Anita (or Mary) is someone to stay with with you.” On a couple of occasions, she has indicated that she liked to have someone with her. I also thought she might be self-conscious about being with them at Panera, but that doesn’t seem to be a problem.

Before leaving for Rotary, Kate said she was tired and asked, “What if I want to rest?” I told her she should feel free to rest. She asked if she should rest on the sofa in the family room or on the bed in our bedroom. I told her should could rest wherever she felt most comfortable. She chose the bedroom. When Anita came in, I explained that she had lost some sleep last night and was resting.

Later, while I was at the Y, I received a call from Anita. She said that Kate had gotten up and seemed confused. Anita thought she might have had a dream because she said something about my mother and was a little teary. This seemed strange as my mother died in 2002. Kate asked about me. Anita thought she might want to speak with me. I asked her to put her on. She asked where I was. I told her I was on the treadmill at the Y. She seemed perfectly fine. I told her I would be home as soon as I finished. We said goodbye, and Anita got back on the phone. She said they were going to Panera.

On the way home, I stopped by Panera and told Anita that I would take her home. When we arrived, she said she wanted to rest. I told her I was going to be in the family room. She decided to rest on the sofa.

I wonder how much of her behavior is related to having lost a lot of sleep last night and how much, if any, is another sign of the changes that are coming our way. I guess I will find that out in the days ahead.

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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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Kate’s iPad

For a while now I have noticed that when Kate is looking for her iPad, she doesn’t say “iPad.” She says something like, “Where is my?” and then makes a motion with her hand. I hadn’t thought much about it. I felt she was just momentarily slipping on the word. On several occasions recently, she has asked, “Is there something I could read?” That seemed strange to me because she never reads. On these occasions, I have asked if she would like her iPad. She quickly says she does. This happened yesterday. For the first time, it dawned on me that she is having the same experience remembering the “name” iPad for her tablet in the same way that she is forgetting the names of people. As for me, she still retains an attachment to the iPad, but she doesn’t know what to call it.

This is just one more example how many things are dropping out of her memory. She is beginning to forget the locations of her toothbrushes. They have been kept in three different bathrooms because she uses all three. Sometimes she accumulates more of them in one bathroom than another, but I come behind and try to see that she always has some in each bathroom as well as toothpaste, of course. Yesterday she asked, “Where can I brush my teeth?” I took her to our bathroom.

She is becoming less assured of where to go when we come in the house at night. On several occasions, she has said, “I’ll follow you.” Last night, I stopped in the kitchen to get something to drink. Instead of going to our bedroom, she lingered around until I was going. I am sure that was because she didn’t know where to go. Each of these things goes along with other things like forgetting where and how to get ice.

I think I mentioned yesterday that she is having more trouble with her iPad. She usually asks me to help her when she can’t do whatever she wants, but sometimes I can see her working hard to solve the problem herself. I suspect part of that is not wanting to bother me, but I think it is also not wanting to acknowledge encountering the same problems over and over. Sometimes she just closes the iPad and has a forlorn look on her face. I know then to help her. Once the problem is solved, she goes right back to work.