Signs of Greater Dependence

When I went in to wake Kate yesterday, I saw that her eyes were open. I spoke to her. At first, she didn’t express any emotion. I walked closer and told her good morning. She smiled. I was glad to see that. We were off to a good start. Her smile soon turned to a look of puzzlement. It was the look that meant she was confused. I sat down on the bed. I said, “You look like you’re wondering where you are.” She didn’t say anything. I proceeded to give her my name and hers. She said, “Where are we?” I told her we were in our bedroom and told her to look around the room, that she might see something familiar. She glanced but didn’t give me any sign that she saw anything she recognized.

I talked with her a few minutes and then suggested that she get up so that I could take her to lunch. Getting up from the bed or a chair is beginning to be more difficult. As I helped her up, she screamed. She felt a pain in her right knee. That is the one with the arthritis. This was the first time she has felt any pain in a year; however, this was different than before. This time it was short-lived. Once she was on her feet, the pain subsided, and she didn’t complain of any pain after that. I took her to the bathroom to use the toilet and brush her teeth.

I showed her the toilet, but as often happens, she didn’t recognize it. I asked her to take a seat. Then she said, “That’s it.” She washed her hands and then started to brush her teeth. I went to the kitchen to take care of a few things. It wasn’t long before I heard our housekeeper tell her that I was in the kitchen. I walked into the family room where the two of them were standing. When she saw me, her eyes brightened, and she had the biggest smile you can imagine. She said, “There he is.” I walked toward her, and she almost ran to me. She reached her arms out to me and we embraced. Then she gave a great sigh of relief. I said, “So Linda told you where I was?” She said, “She did?” Then she looked at Linda, tears filled her eyes. She thanked her and gave her a big hug. To me, this is one more striking example of her increasing dependence on me. There have been times in the past few years when I lost her for a period of time, once for three hours in Niagara-on-the-Lake, Ontario. She wasn’t bothered at all. I was the one who was panicked. This time we were not more than fifty feet apart (though she couldn’t understand that) in our own house, and our separation was only minutes.

It also seems to me that she is more responsive to my suggestions. For example, she hasn’t been as slow to respond when I tell here it is getting to be bedtime. She is also decidedly more accepting of my help in dressing and holding her hand when we are walking to and from the car.

I can’t help wondering what comes next?

Fading Away

These days I see unexpected changes in Kate’s behavior and mood. In some cases, they are new things. More typically, they are things I have observed before. The difference is that they are becoming more frequent. At dinner last night, we had a conversation about our children and the good times we had had during our marriage. Moments later, she didn’t know my name or that I am her husband. Again, this is not something entirely new. It’s the abruptness with she moves from clarity to confusion.

Last night, I saw a message from a man who felt his wife was fading away. I can relate to that. I have had this sense for years. Now it feels like the end is so much closer, and it is.

The other day before leaving the house for the hair salon, she went to the bathroom. When she came out, she said, “I’ll never do that again.” I don’t know what she was talking about, but she was wiping her hands. Fifteen minutes later at the salon, she asked me if they had a restroom. I told her they did, and she wanted me to take her. She looked a little frightened as we walked through the salon. When I opened the door for her, she said, “You better come with me.” Once inside, she spent her time washing her hands and her arms, taking much longer than I would have thought necessary. I didn’t see why she wanted me with her. I know she has had other experiences when she didn’t know what to do in a restroom. One time she tried to exit through a locked door to a supply room. In that case, our server helped her get to the correct door. Another time she locked herself in and couldn’t unlock the door. The experience at the salon made me suspect she was feeling particularly insecure. It also appears there was some connection with her statement at home that she would “never do that again” and her washing her hands and arms at the salon. Did she accidentally put something on her hands at home that she still needed to get off? I have no idea. I don’t know of anything (like a household cleanser) in the bathroom at home. It’s another mystery.

I see signs of change at home and everywhere we go. She sometimes forgets where her toothpaste and toothbrush are even though I now keep them on the counter in the bathroom where they are quite visible.

At lunch yesterday, I mentioned that we would have pizza last night. She didn’t recognize “pizza.” I gave her a description, and she still had no idea what I was talking about. She picked up a slice of a black olive that was with her meal. She said, “I like this.” I told her it was an olive. That didn’t mean anything to her.

Her dependence on me continues to increase. At lunch, I said something about someone who had died. In a moment, and with a look of concern, she said, “What would happen to me if something happened to you?” I reminded her that my dad had lived to 100 and suggested I might do the same. Her question, however, had a tone of greater concern that deserved a more serious reply. I reminded her that our son is in the elder care business and was quite familiar with all the resources and issues related to seniors. I told her he would step in and care for her and that would mean she would probably move to Texas to be near him. She gave a sigh of relief and said she felt better knowing that. That is just another sign of her awareness of her dependency.

She has always been appreciative of the things I do for her, but she has moments when her expressions are more excessive than before. When we left the hair salon the other day, she said, “You’re a nice guy, a really nice guy, and I mean that.” In the car she said, “You are the best man I know.” Near the house, she said, “Do you know who is most important?” I said, “Who?” She said, “You are.” This was one of those happy/sad moments. I am happy that she feels more secure with me, but I am sad for her to experience the insecurity that makes her need me.

At home we looked through a portion of the “Big Sister” album. She got tired and wanted to rest. While resting on the sofa, she asked, “Where are we right now?” I told her we were in our very own house. She said, “The inside?” She really is fading away now. I don’t know what she will be like in the next few months.

Something New

About 7:30 yesterday morning, I noticed on the video cam that Kate was sitting up in bed. She had stern look on her face. I asked if she wanted to go to the bathroom. She said no. I said, “What would you like to do? I would be glad to help.” She motioned me to sit in the chair beside the bed and said, “You start.” I said, “Start what?” She said quite firmly, “You know.” I told her I really didn’t and that maybe she had just had a dream about something. She was emphatic that she wasn’t dreaming. Again, she told me “to start.” I told her I wasn’t sure what she wanted me to say. She said, “Then why are you here?” That led me to take another approach. I told her my name and her name. Then I proceeded to tell her about our meeting and our courtship at TCU. I gave her a synopsis of our getting married, going to graduate school, jobs, having children, and the places we had lived right to the present. As I talked, she started smiling. Her mood began to change. When I got to the end of my story, I said, “We’ve been happily married for fifty-six years, and I love you very much.” She smiled and said, “I love you too.”

I gave her a hug and asked what she would like to do now. She said, “I don’t know.” I told her it was just 8:00 and that she usually liked to sleep a little longer. She told me that is what she wanted to do. I pulled back the cover, and she got back in bed. She slept until 10:00 when she got up for good. She was in a good mood and expressed no confusion at all. She was ready to go early enough that we were able to spend some time at Panera before going to lunch. I will never know what caused her to be irritated with me when she first woke up. I just hope it doesn’t happen again. If it does, I will probably take the same approach, that is, just talk about things that get her to think about the good times we have had.

Morning Confusion, But a Good Recovery

I’ve talked before about the way happy and sad moments are often intertwined. That was true for the way our day started yesterday. About 7:45, I saw on the video cam that Kate was sitting up in bed. I went to check on her. She wanted to go to the bathroom. She was very groggy and confused. I walked her to the bathroom. Like the day before, she was unsure of herself. Even when I showed her the toilet, she was unsure that was it. This was not the first time. I’m not sure whether it is the fault of her eyesight or her memory that prevents her immediately recognizing the toilet.

When she had finished, she said, “What now?” On some days she resists taking a shower. I took advantage of her dependence on me for direction and told her I thought it would be good to take one. I knew it was unusually early for her to get up, and she would want to get back in bed after showering. That is exactly what happened. I got her up in time get to lunch and back before the sitter arrived.

She was still confused and asked my name, and I told her. Then she asked her own name. I told her. It wouldn’t stick, however. She asked the same questions another four or five times before I got her dressed.

Fortunately, it was a day when we had plenty of time to have lunch before the sitter’s arrival. As we walked into the family room, she took a few minutes to admire her plants. She almost always stops just before the door to our kitchen to say hello and goodbye to Pepper, the ceramic cat that lies on the floor near the fireplace. She did so yesterday. This time she also looked at a photo of our son, Kevin, when he was about ten. She was especially taken with it and asked if she could take it with us. I told her she could. I asked if she knew who he was. She didn’t. When we reached the restaurant, she asked if she could take it inside. I told her that would be fine. She took it along with her and kept it in front of her during the entire meal. By the end of our lunch, she seemed to be back to normal.

She was tired when we returned to the house. She was resting on the sofa when Mary arrived. I told her I was leaving to donate platelets and that Mary was there if she needed anything. She told me goodbye and greeted Mary but didn’t get up. When I came home, the two of them were talking. It was another good experience with the sitter.

She wanted to rest again after Mary left. She rested about forty-five minutes. Then she said, “Would you add one other thing to what I had written? Tell him where we live.” I said, “I will.” I didn’t ask who. I am sure it was another instance of her thinking about something and believing it was a conversation we were having.

At dinner, Kate was confused about what to do with her napkin. First, she asked our server what she should do. The server didn’t understand what she wanted. I placed the knife and fork for her. Then I told her to put the napkin in her lap. She could not understand that. It may have been that she didn’t recognize the word “lap.” She is forgetting more words these days. For example, she didn’t know the word “pickle” at lunch and never remembers “gelato” even though we have it twice a week. At any rate, I got up and placed the napkin in her lap. By the time I got back to my chair, she had already put it back on the table and asked, “Is this all right?” I told her it was.

Normally, when we get home from dinner, we sit in stay in the family room a while before going to our bedroom. Last night, Kate was tired, so we skipped the family room. I watched a little of the evening news and then took a shower. I turned on YouTube videos of Sierra Boggess at one of the BBC’s PROMS concerts. When I finished my shower, I saw her sitting in her chair enraptured by the music. She was smiling with her eyes closed and her head moving in sync with the music. She watched the videos a while longer and then wanted to go to bed.

When I got in bed an hour later, she was almost asleep. I moved over close to her. We chatted a couple of minutes.

Kate:              “Who are you?”

Richard:        “Do you mean my name or my relationship with you?”

Kate:              “Both.”

Richard:        “First, tell me if I seem to be someone familiar to you?”

Kate:              “Yes, very familiar.”

Then I told her my name and that I was her husband. She didn’t display any surprise as she sometimes does. It wasn’t long before we were asleep.

The Day After

Following the “Very Good Day” day before yesterday, we were back to what I might call the new normal. It’s probably more accurate to say there is simply less predictability in our daily lives than there used to be. The expression “remarkably well” continues to be a good summary, but Kate is definitely not the same as she was even six or eight weeks ago.

I was encouraged when I went in to wake her. As the day before, she was already awake and gave me a nice smile. She was fine until I tried to help her out of bed. She wanted to do it without my assistance. I backed off, but the damage was done. From that point until nearly the time we left the house for lunch, she seemed both irritated with me and afraid. It wasn’t that she was afraid of me. I think it was a case of fear from not knowing where she was, who I was, who she was, or what she should do. She held on to me as we walked to the bathroom. When we got there, she didn’t know what to do. I pointed to the toilet and said, “Why don’t you go to the bathroom first. Then you can wash your hands and brush your teeth. That was too much information. I know better than to do that, but it was too late to take it back. That didn’t set well with her. She was not only irritated but confused. When she was ready, she said, “I don’t know what to do. Just tell me.” I put toothpaste on her toothbrush and handed it to her. She dropped the toothbrush in the sink, and the toothpaste came off. I told it came off and would get her some more. The same thing happened a second time. She felt I had rushed her and strongly expressed her irritation with me. Then she apologized for the way she had spoken to me and started to cry. I tried to calm her and was mostly successful, but it wasn’t until we were on the way to lunch that her emotion subsided.

The rest of the day went well. We had a nice time at lunch,, during the balance of the afternoon, and at dinner. Then on the way home from dinner last night, Kate said, “Where do you live?” I said, “Right here in Knoxville. I’m taking you home right now. You can spend the night with me.” She answered, “You mean the three of us.” I said, “Who is the third?” She gave me a look of irritation and said, “You know who.” I didn’t pursue it any further. I’ve learned that I never get an answer when she says that.

A Very Good Day

In many ways, yesterday was just an ordinary day. I got Kate up in time for the sitter who arrived at noon. I went to my Rotary meeting, to the Y, and the grocery store before getting back home to relieve the Cindy. Kate and I relaxed in the family room for an hour and then went to dinner and returned home. We received a phone call from our daughter and ended the day. So why do I think it was “a very good day?” Let me tell you.

We were off to a good start when I went to wake Kate shortly after 11:00. She was already awake and gave me a smile that said, “Everything is all right. I’m just enjoying resting.” I sat down on the bed and we talked a few minutes before telling her it was time to get up. She wasn’t eager, but when I explained that I was going to Rotary and Cindy would take her to lunch, she agreed to get up. She was in a good mood and, other than needing me to guide her to the bathroom, she gave no sign of her normal early morning confusion.

She dressed slowly, but promptly, and was ready before Cindy arrived. I was leading her to the kitchen for her morning meds when she wanted to stop and admire the flowers in our family room and the ones on the patio. I enjoy watching her experience such joy. We started toward the kitchen, she stopped and said hello to the ceramic cat that has been a “pet” for quite a few years. He is now resting in front of a cabinet beside the fireplace as we walk to the kitchen. Then she noticed, as she almost always does, pictures of her father, our son, and me when I was about twelve. She loves looking at them, and her pleasure increases when I tell her “who we are.”

When Cindy arrived, Kate gave her a hug and showed no signs of concern about my leaving. They were sitting in the family room when I got back. I was glad that it did not appear that Kate had taken a nap as she often does. Even though she often naps after lunch, I sometimes feel that she uses that as a way to escape the sitter. This time they were talking. I also saw that she had the three-ring binder memory book on the table next to her. She had been looking at it.

One of the highlights of the day came after Cindy left. Most of the time, Kate is ready for us to leave the house as soon as I get home. Recently, that has been changing. Yesterday Kate gave me no indication that she was ready to go out. I turned on some music that I know she likes and sat down with my laptop to check my email. After a few minutes, I looked over at her. She had closed her eyes. Each hand was flat against the other as if in prayer. I have observed this on several other occasions. She continued to enjoy the music for about forty-five minutes. She periodically opened her eyes. She also released her hands off and on depending on the particular song that was playing. Her facial expressions and her hands worked in harmony with specific segments of the songs. Sometimes she was smiling. Other times, she was teary. She was enjoying herself so much that we went to dinner thirty minutes later than usual.

Another highlight occurred after we returned home from dinner. We received a phone call from our daughter who had just returned from a trip to England and France with her seventeen-year-old twin boys. It was their first trip, and she was excited to tell us about it. Kate said only a few words but listened intently to Jesse as she recounted their experiences.

When I reflect on our day, I have to say it was good day. Looking back, I don’t recall a single time she asked my name, or hers, or where we were or anything like that. It was a day when she was not talkative but at ease and seemed to know me and her surroundings. She might not have, but I like to think that she did.

More Signs of Change

I notice lots of little things that suggest Kate’s brain is undergoing more significant changes. If they were isolated things, I wouldn’t think much about it. It’s the accumulation of so many in a relatively short period of time that strikes me most. Consider the following things that have occurred over the past few days.

On the way home from dinner a few nights ago, she said, “My house or yours?” I said, “Yours.” I didn’t explore this any further, but this was something new. She often doesn’t recognize I am her husband or recognize our house, but I’ve never heard her refer to her house or mine. What was she thinking that prompted this? I don’t know. That’s true for many of the things she says or does.

Walking to the car after dinner last night, she said, “I wouldn’t want to have their job.” I asked who she was talking about. She said, “You know those people with the ‘stuffies.’” She knew that wasn’t the right word but couldn’t think of the word she wanted. She counts on me to know what she means. As usual, I just indicated I understood and agreed with her.

She was up early yesterday. I think she must have had a dream because she was worried about having to be some place. I assured her that she didn’t have any obligations and could go back to bed.

While she was resting on the sofa that afternoon, she said, “Do I have to go some place? A meeting or something?” She seemed quite concerned. I told her she didn’t have anything on her schedule. A few minutes later, she opened her eyes and pointed in the direction of the door to the kitchen and asked, “What’s in there?” I mentioned several things. They were not what she meant and seemed frustrated that I didn’t immediately recognize what she was talking about. I told her the kitchen was on the other side of the doorway and the laundry room to the right of that. Nothing I said gave her the answer she wanted, and she gave up asking.

She has also been talking in her sleep more than usual. She doesn’t say much. Often it is like a simple statement or answer to a question that someone in her dream has asked.

Her intuitive abilities seem to be in overdrive sometimes, but that is a good thing. It usually means she is deriving pleasure from things around her– flowers, plants, and trees in particular. Some of her aesthetic interests are a little strange, but they, too, provide pleasure. She takes greater interest in tidiness and the arrangements of things than in the past. She is often careful about the way she places her flatware, glass and napkin on the table at restaurants. Yesterday as we walked through the laundry room to the garage, she noticed a washcloth I had put out to dry. She liked the way it looked. A few weeks ago, she asked me to take a picture of the cloth napkin she had used at a restaurant. She had just dropped it on the table and thought it looked a little like a sculpture. Although I wouldn’t have thought about it until she said so, I agreed with her and took the photo. At her request, I take more pictures these days.

For years, she has not wanted to stay anyplace, including home, for more than a couple of hours. That was a main reason we started going to the café at Barnes & Noble in the afternoon. Now we usually chooses to stay at home most afternoons. On the other hand, sometimes in the morning she says, “Let’s get out of here.” I assume that is a time when she thinks we are staying at some other place than our home.

I believe the primary reason for wanting to spend more time at home relates to her resting more. She seems more tired these days. I notice, however, that it is not necessarily sleep that she needs. Yesterday, for example, she rested two hours or more with her eyes open and running her fingers through her hair. She often spends almost that amount of time doing the same thing after going to bed at night.

Something of greater significance to me is that she seems to be using her iPad somewhat less than in the past. I believe that relates directly to her feeling tired and frustrated with the difficulty she has working her puzzles. I attribute both being tired and frustrated to the changes going on in her brain. At the same time, she may be spending more time with her family photo books. She is occasionally confused when her photo books don’t work the same way as the puzzles on her iPad. She touches a photo and expects it to scatter into puzzle pieces. When it doesn’t, she doesn’t know what to do.

Despite these changes, Kate and I had a nice day yesterday. We didn’t do a lot, but we enjoyed our time together.

Special Moments

Given Kate’s decline and my comments about sad moments, I felt a need to let you know that we still experience happy moments as well. In fact, they still outweigh the sad ones. We had a several of those yesterday. The first occurred at lunch. When our server greeted us, she reached out to give Kate a hug, something she does when we arrive and leave each Saturday. Kate gave her a warm embrace. Then she looked at me as if to introduce me and said, “This is my friend.” I agreed and said, “She is a good friend, isn’t she?” Kate beamed and said, “Yes, a very good friend.” I know that Kate doesn’t remember our server, at least by name, but she has developed a feeling for her. When she walked away, Kate said, “I like her. She’s so friendly.”

I love everything about moments like this. They are a major reason we eat out. We only get hugs at one other restaurant, but being regulars at so many places provides us with a kind of warmth that is decidedly different than the good service we receive at places we visit only periodically. And that is in addition to the people we encounter who are friends and acquaintances from our other community activities. Food really is quite secondary to the overall experience.

I don’t think I can overemphasize the pleasure Kate derives from her intuitive abilities. The experience at lunch is just one example. We experienced another special moment when we got home. As usual, she immediately looked at the flowers on our patio from the family room. She admired them a few minutes. Then she said she wanted to rest a while. She mentioned going to the bedroom, but I suggested she might want to lie down on the sofa in the family room where I would work on my laptop. She liked the idea and took a seat. As she did, she noticed one of her family photo books, this one focusing on her father’s family.

We have done so much of this that I know she can’t remember the people in the pictures and has difficulty reading the accompanying text. I asked if she would like me to go through it with her. She said yes, and I sat down beside her. We spent about thirty minutes going through about half the book. She was thoroughly enjoying herself, but she again said she was tired and wanted to finish later. Like a little child, she asked if she could lie down for a while. Then she asked if she could take her shoes off.

I sat down in a chair across from her. She was lying facing the sliding glass doors leading to the patio and backyard. She didn’t close her eyes. She looked at the dense growth of trees on our neighbor’s property. From her vantage point, she can look at them from the top of the wall on our property to the tops of the trees that are visible through the room’s skylights. She never seems to tire of admiring them. She didn’t go to sleep or even close her eyes for at least forty-five minutes. During that time, she called my attention to things she noticed like the different shades of greens, the height of the two tallest trees, and shimmering of the leaves as the wind picked up.

Last night when I got in bed, she was still awake . That’s when we had a conversation that was another happy moment of the day. We talked about the day and how nice it had been. Then I said something about our daughter. She said, “Our daughter?” I said, “Yes.” She said, “How did that happen?” I responded by telling her about our dating, falling in love, and getting married. That led her to say that we had a happy marriage. She said, “We just clicked.” She mentioned our having shared values and said, “You know, we laugh a lot. I think that helps.” We talked another ten minutes or so when she closed the conversation by saying, “and it (our marriage) is going to last. I was ready to believe that my telling the story of how we fell in love and married had jogged her memory. “Now she understands who I am.” That’s when she asked what has become a familiar question. “And what is your name?” Of course, she may have realized we are married, but I suspect she didn’t at that moment. At best, her memory lasts only seconds. It’s just as possible that she didn’t remember. I am learning, however, to take pleasure in the joy she experiences through her intuitive abilities. That seems to work. It creates a lot more happy moments than I might notice otherwise.

Interpreting Kate’s Feelings

Yesterday Kate greeted me with a smile when I went in to get her up. I always like that and want to think that means she knows my name and that I am her husband. She didn’t say anything that would let me know, and I didn’t ask. I told her I liked her smile and reminded her how often she comments about other people’s smiles. It seems to be one of the first things she notices. I told her I loved her. She said she loved me. Then she appeared very sad and her eyes filled with tears.

During most of our marriage, I rarely saw any tears. Since Alzheimer’s entered the picture, tears have become more common. As she declines, she is much more emotional. Tears flow at happy and sad moments. In moments like this particular one, I wonder if she experiences the same feelings I do. Every time I say, “I love you” I feel I am also saying, “Goodbye.” I know that I am losing a little bit of her every day. Her senses are keen. She knows something is wrong with her. At some level, I think she, too, feels that our time together is fleeting.

Contrasting Social Situations and Kate’s Response

It seems that Kate’s current behavior is, in part, related to the situations in which she finds herself. Yesterday, she reacted very differently to two social situations. The first was lunch with our senior pastor. As I had done when we met my Twitter friend last weekend, I made sure that she was seated directly across the table from him. He was also good about including her in our conversation. Kate responded accordingly. He and I did most of the talking, but she was also an active participant. Both of us enjoyed our time together. I doubt that our pastor could see much difference in her since we had lunch together two to three months ago.

Last night was an altogether different experience. We went to Casa Bella for Broadway night. We sat at a table for ten, and the talking was louder than usual. Often when we arrive there is only one other couple with whom we sit each time. That enables her to establish a comfort level. Last night, we were the first ones there. Shortly after, the rest of the group arrived. I think this was overwhelming for Kate even though everyone was good about speaking to her.

While we were waiting for our server to bring our meal, Kate started looking around the room. She looked very concerned. She said, “Where did she go?” I said, “Who do you mean?” She said, “The woman who came with us.” I told her it was just the two of us, that nobody came with us. She didn’t seem convinced.

Until the food arrived fifteen minutes later, she was very uncomfortable. She said that she was looking for her food. I told her they were preparing it, and it would be coming soon. She continued to be very bothered and wanted me to speak with the server. At one point, she caught the eye of our server and motioned for her to come to her. Before she could ask about our meal, I told the server we were fine, and she walked away. Kate’s distress continued until the meal arrived. Then she devoted her attention to eating.

On a typical music night, Kate would have loved the music. She did respond well to two or three numbers but expressed little enthusiasm for the overall program. The singers were outstanding, but they sang a lot of Sondheim’s music. It was not as melodic as she likes. She was glad when we left.

The whole experience made me wonder what the future holds in terms of our attendance at these music nights. They have played an important part in our lives for the past six or seven years. Last night, she did not enjoy herself the way she has in the past. She seemed to be bordering on causing a scene because her food had not arrived when she thought it should. I’ll just have to play this by ear in the future. If we are going to continue sitting at a large table, I may experiment by getting a table for two. Crowds appear to be a growing problem.