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Kate and Conversation

Over the past couple of months, Kate has been far more talkative than at any time since the first year or two after her diagnosis. We discontinued her Trazadone in late May or early June. I think that might account for the change. It doesn’t help to fret, but it makes me wonder if we should have done this a lot earlier. It’s been a long time, but I remember times when she was so tired that she kept her eyes closed when we were at restaurants waiting for our food. I used to feel a little embarrassed about what others looking at the two of us might be thinking. Did they think I had hurt her in some way? She often looked so sad. That might have been avoided if I had connected it to her medication.

Talking a lot more is not the only change. As her memory has declined, she has had less to talk about. When the two of us talk, we stick largely to how we feel about our life together as well as our families. She speaks frequently about her mother and expresses very positive feelings but very few details about her. She also feels that we are very fortunate people. Again, she can remember few details. She most often mentions how fortunate we are to have been happily married for so long and to be so proud of our children. I fill in the facts on all of these things. I tell her about her mother and father, the things we have done, and what our children are doing.

Increasingly, she is asking more questions. That was especially true yesterday. At lunch at Applebee’s, she looked at me and asked, “Are you my father or my husband?” I told her I was her husband. Then she said, “I was afraid of that.” (Yesterday was also a day when she teased me a lot.) A minute later, she asked, “What is your name?” I told her and moments later, she asked again. That was followed by “Where are we?”

Questions about our family and names of places dominate her questions, but she also asks more surprising questions. For example, shortly after asking where we were, she asked how many Applebee’s there are. That didn’t surprise me. She has asked quite a few times before though not enough for me to remember. I always pull out my phone and get the answer. It isn’t limited to Applebee’s. As you might expect, she also asks about the number of Paneras and other franchises. One time she wondered how many times we had driven on the street that leads to our neighborhood. I did some quick calculations and came up with a “guesstimate” of 40,000. She’s asked a similar question about the main road that leads from town to our house. I haven’t calculated that one.

I find it interesting that she retains some interest in news events. That occurs when I am either watching the news on TV or on the radio in the car. She picks up something that is said and doesn’t understand it. In those cases, she wants me to explain. I always try but am often unsuccessful. Those conversations frequently end when she says, “Why don’t you tell me about it later when I’m more alert.”

On the way home from lunch, she asked, “Where is our house?” I told her Knoxville, but she wanted to where in Knoxville. I gave her the name of a hospital that is near the house. That worked. Once home, she stopped in the kitchen and said, “I’ll follow you.” That is always a sign that she doesn’t know where to go.

After dinner, we spent some time in the family room relaxing. She worked on her iPad and periodically looked out on the dense growth of trees on our neighbor’s property behind our house. She loves that view. At that point last night, she may have still thought we were staying someplace other than our home as she had earlier.

After I took a shower, she came back to our bedroom where I turned on a DVD of Sound of Music that we had started earlier in the week. I thought that she might immediately take an interest, but she was more interested in her jigsaw puzzles. That led me to see if she would react differently to Les Miserables. I didn’t say a word to her. I just took out Sound of Music and inserted Les Miserables. As soon as the music came on she looked up. Shortly thereafter, she put way her iPad and devoted her attention to the music.

I was hoping to turn it off before 9:30 so that she could get to bed. When I mentioned that to her, she said she wanted to watch a little more. At 10:00, I stopped it and suggested that she get ready for bed. She agreed even though she would have continued watching for a good while. This was the seventh time we have watched it recently. Her response was as enthusiastic as it was the first time.

We were in bed around 10:15. I was the one who was ready to go to sleep. She was in a talkative mood. She talked a lot about how fortunate we had been as a couple. Although she has forgotten a lot of details, she does remember some important things. For example, she mentioned the fact that her parents and my parents had long and happy marriages. Her parents and mine really were devoted to each other. She said, as she has many times before, “The most important thing is that we have had a good marriage, and we are proud of our children.” That is interesting in that earlier in the day I had said something about our children. She said, “I have children?” The last time I glanced at the clock it was 11:00. She was still going but slowing down. I don’t remember much after that.

Although she has been more talkative with me, she is less talkative in groups. Except for greeting people when we get to Casa Bella for their music nights, she talks very little. I would have to say that it can be a challenge. We often sit with three couples. All three of the men are talkers. I don’t think, however, it is just that. She simply doesn’t remember enough things that people are talking about to make a comment. When people ask her direct questions, she usually looks to me to provide the answer.

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After Dinner Last Night

Kate had gone to brush her teeth after returning home from dinner last night. I took the clothes out of the dryer. In a minute, I heard her call to me. When I reached her, she was in the bathroom and said, “I like this place where we’re staying. It’s so spacious and attractive.” I said, “Yes, it is.” I didn’t say anything about its being our home.

A little bit later she took a seat in the family room. She looked out to the back yard and said, “This is a nice place. Look at the trees. They’re so beautiful.” I agreed, of course. Once again, I didn’t say anything to suggest that she was confused.

Before going to bed, Kate went to a bathroom off the guest room next to our bedroom. She seemed to take an unusually long time. Then I heard her call my name. When I answered, she said, “Where are you?” I said, “In our bedroom.” She said something that made me realize that she didn’t know where that was.  I said, “I’m right here.” Then I walked to the hallway where she was standing. It wasn’t until she saw me that she knew where to go. I wonder how long she had been looking for me.

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Increasing Difficulty Dressing

I checked on Kate at 8:45 this morning. She had just gotten up. In her arms she had gathered the clothes I put out for her. She was headed to take a shower. I asked if she would like to use the one in our bathroom. She said it didn’t matter, so I suggested she use ours. I got everything ready for her.

A little later I checked on her again. She had showered and was starting to get dressed. I looked in the bathroom and discovered she had used the two towels I put out for her. In addition, however, she had gotten into two drawers of other towels. She had tossed at least three different hand towels on the floor, only one of which appeared to have been used. In addition, she had pulled out another bath mat that was on the floor along with several wash cloths. She continued to dress while I took care of the bathroom.

After another 45 minutes, I checked, and she was still not dressed. She had misplaced several things and was searching for them. This is becoming common. Although I have each item laid out so that she can see each one, she seems to pick up one thing and put it someplace else. The items are usually thrown someplace so that it they can be hard to find. That is particular hard when something like black socks are thrown on our dark blue rug. It can be difficult to find them.

We are in one of those in between stages. She is already accepting my help in picking out her clothes, but she still likes to dress herself. I can understand that. I think I would be the same way. I am trying to let her do just that but checking on her periodically so that I can find the things she has misplaced. I suspect that is a major reason it takes her so long to dress. I know that some of that time is trying to identify the front from the back of her top and pants and then to put them on correctly, but some of it has to be trying to locate the things I had put out for her. We are, of course, moving toward the time that I will play a major role in her dressing. At the rate we are going, that won’t be long. In the meantime, we’ll stick with what we are doing now. I want her to retain as much independence as she can.

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One of Those Sad Moments

At lunch today, I said something to Kate about her mother. Then she said something that suggested that her mother was still alive. I said, “Your mother passed away.” She looked shocked, and I said, “Yes, she died in 2005, and you can feel good about the way you took care of her the last years of her life.” Then I said, “You were a very faithful daughter.” She said, “I’m her daughter?” She looked very sad, and her eyes filled with tears. I gave her the whole story of how she had made arrangements for her mother to move to Knoxville to live with us. I talked about a conversation we had one night that led to her contacting a friend about an agency that had provided in-home care for her husband who had recently died. I also told her that the caregiver who was in the house to greet her when her mother arrived was holding one hand when her mother died and that Kate and I were holding her mother’s other hand. She seemed to be comforted by this.

This was the first time she has ever given any sign of not remembering her mother’s death, so it caught me off guard. It raises the question I have read others talking about. Should I have told her the truth? In this case, I didn’t have time to consider the best way to respond. I believe I did the right thing. I suspect that she will forget again sometime, but I expect that she will remember most of the time, at least for a while. If she were further along, I would probably let the subject slide by without saying anything at all.

Regardless of what was or wasn’t right about the way I handled the situation, it was sad to see the memory of her mother’s death slipping away as well as the sadness she experienced when I told her.

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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.