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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.

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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.

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Joy and Sadness Intertwined

The other day I mentioned that I experience more sad moments now, but that does not mean that we don’t experience many joyful ones as well. Our Saturday meeting with Joan, my Twitter friend, is a good example of that. Even in our daily lives we have such moments. There are also times when I experience both joy and sadness at the same time.

As we arrived home from lunch the other day, Kate asked me her mother’s name. When I told her, she said, “I wish I could have known her.” I said, “Let’s go inside, and I’ll show you some pictures and tell you about her.” Once inside, I took her to the hallway where there are several family photos. I pointed out one of her mother that is a favorite of mine. It must have been taken when she was about twenty. Kate has always liked it as well. She asked me who it was. For several minutes, she looked at it and commented on her mother’s eyes and how beautiful she was. She was deeply touched. Then I showed her pictures of her father. She asked his name and said, “He looks like a good man.” I told her he was “a very good man.” I followed that by showing her a photo of her grandmother. Kate was excited to learn that she had been the first member of the family to attend TCU.

After looking at these pictures, we went back to the family room where I showed her an album she and her brother had made of her mother’s family. It was just like the first time she had ever seen it. She was excited.

After dinner that night, she worked on her iPad for a while. I noticed that she had put it down and was just sitting in the chair looking bored. I brought in the “Big Sister” album that her brother Ken had given her a year ago. We went through a few pages together before I took my shower. She continued to look through it until she was tired, but she had had a day of pleasure looking at her family photos.

They were moments of joy for me as well, but that joy was accompanied by a measure of sadness as I perceived that the pictures did not bring back memories in the way they had done in the past. They only served as brief moments during which I told her about her family. The memory was gone just as fast as I gave her their names. Her interest in the photos struck me as a vain effort to reclaim her memories of family. We’re in a different place now.

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How I’m Feeling

Considering Kate’s recent changes, it’s fair to ask how I’m doing. Let me try to answer that. By now, you know that I am bound to say, “remarkably well,” but it’s more complicated than that. Like Kate’s spirits, mine go up and down in about the same proportion as hers. As I have said before, “When she’s happy, I’m happy.” That implies there are times when she is not happy. That is true for both of us.

After Kate’s unusually happy day a couple of days ago, yesterday and the day before have been a little different. It’s not that she was sad or depressed. She wasn’t. It was that the symptoms of her Alzheimer’s seemed to be more evident. There wasn’t anything new. She just seemed more like she was drifting away, somewhat distant. That was particularly true last night.

At dinner, she asked my name several times and asked what I like people to call me. I said, “Richard.” She asked if that is what she should call me. I told her that would be fine. When she asked, she did so in the very natural way she usually does. What was different was that my name didn’t seem to register with her at all. It didn’t seem any more familiar than the name of the restaurant at which we were eating.

Our evening after dinner was also a little different. She was very tired and wanted to rest about 7:30. I suggested she could get ready for bed. At first, she just wanted to rest on the sofa. I told her it was getting close to bedtime, and it might be better to get ready. After getting into bed, she asked my name in much the same way she had done at dinner. After two or three times, I asked if she knew how we were related. She didn’t. When I told her we were married, she couldn’t believe it. I gave her a little information about our courtship and our wedding. That seemed to ring a bell, but she soon asked my name again. I told her and didn’t say anything more.

She has been gradually drifting way over the past few weeks. That means more moments of sadness for me. Like all things, I knew this would happen eventually, but it is the reality that has the greatest impact. I know that Kate’s condition will only get worse.

The good news is that I have a lot of things to keep me occupied. This blog is one of them. I am editing a book of emails I wrote under my dad’s name the last few years of his life. I am also writing an article for someone else’s blog. I am active on Twitter and with the United Way, Rotary, and the health foundation on whose board I served for nine years. In addition, I donate platelets every 3-4 weeks.

Of course, my primary role is that of Kate’s care partner. While that involves stress, it also incorporates a considerable amount of pleasure. I am thinking specifically of all the social contacts we have in connection with our meals and the many ways in which music plays a role in our lives. Beyond that, I derive satisfaction from helping Kate get through each day. She can’t do it on her own. I am glad to be here for her.

On balance, I believe that I am doing “remarkably well,” but there is no question that there is more sadness in my life as I watch her decline. I can work to minimize it, but I can’t escape it.

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Another Bedtime Conversation: An Example of Kate’s Intuitive Thought/Ability

In yesterday’s post, I talked about the challenges that Kate faces in some types of conversations. I also noted that we converse about as much as we did before Alzheimer’s. I failed to say that until I took her off of Trazadone a year ago, she didn’t talk much. Most mealtimes we hardly spoke at all. Looking back, I think she may have been taking a higher dose than she needed. She was very sleepy. I am glad to say that is no longer an issue. We do have conversations, and some of those are unlike anything I could have imagined. Night before last we had one of those.

As usual, Kate was still awake when I got into bed. I moved over close to her and commented on what a nice day it had been. I told her I loved her. She said, “I like you. I even think I love you.” She went on to say that she was not ready to marry me. From there, she took us in a very different direction.

She talked about a “project” that she was thinking about. She never got specific, but she wanted to do something for people who have chronic financial problems. She expressed a desire to recruit a large number of people who could join together to address these issues. She wanted me to work with her. I told her I would. As with other conversations, she was very repetitive. She would circle back around and say the same things she had said earlier. She was confident with the two of us working together we could make a difference in people’s lives.

This conversation was another good illustration that her feelings are working. She can’t remember any facts, but she retains a sense that there are people with many needs. Her heart goes out to them. This particular idea about initiating a project to help people in need is just one example of that. It is also apparent when she talks about her mother, she invariably talks about her mother’s kindness to others and her desire to “help people.” Her mother was indeed kind, but I view this mostly as an expression of Kate’s personal feelings about relating to other people. It is also evident in the way she interacts with strangers. She is a caring person. This is not something new, but it is more pronounced now than in the past. It is certainly a more positive symptom of Alzheimer’s than one usually imagines.

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Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.

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What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.

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Remembering Texas

Although Kate has always valued her Texas roots, it has never been as significant as it has been in recent years. Part, maybe most, of this feeling for her home state is tied to our reflections of the past as we get to our senior years. I know of lots people who find themselves reconnecting with friends from their childhood and sharing old memories of their time together. I suspect that Kate’s affection for Texas also relates to her Alzheimer’s. Like other people with dementia, she lost her short-term memory quickly. Now she retains only long-term memory, and most of that is gone as well. The fact that she is a Texan has stuck with her though she sometimes forgets her birthplace and has to ask me.

After returning from a trip to Texas several years ago, Kate’s feeling for the state got a significant boost. It wasn’t long after we were home that I discovered she thought we had discussed and decided that we were moving back. At first, I thought I was the only one she said anything to. Soon friends were asking me about our move. At the time, I didn’t want to burst her bubble, but I also didn’t want to reinforce her thinking. I supported her desire and explained that I would enjoy living in Texas as well. I also told her it would be a while before we could make the move because there were a lot of things we had to do to get ready. I was hoping that her memory of a move would drift away like so many other things.

I was wrong, but I was successful in getting her to think the move would be sometime in the future. Gradually she said less and less about a move. During the past couple of years, she has rarely said anything about it. Now it is coming back. This time she is expressing it as a desire to live in Texas, not something we have decided to do.

I have been quite interested in how she has brought it up. It almost seems like a calculated way to spark my interest. For a while, she would say something like, “I know we aren’t planning to move to Texas, but do you think that could happen?” In the past few days, she has also gently brought up the subject. Yesterday afternoon at Barnes & Noble, she asked where we were. When I told her, she said, “So we’re not in Texas?” I told her we were in Tennessee. She paused and then said, “Where do you think we will end up?”

I told her that depended on a lot of things, that we might stay right here in Knoxville. I explained that we were happy here, like our home, and were comfortable getting around the city which offered a lot of the things to do. Then I added that a lot might depend on our needs as we got older. I suggested that if our needs became significantly greater, we might move to Texas. I reminded her that our son Kevin has spent his whole career working with seniors and has access to all the resources that seniors need. She was pleased to hear that.

I must have been bolstered by her response because I mentioned a possible trip to Texas. Our granddaughter graduates from high school in June. I would really like for us to attend, but I have felt it is very unlikely. I considered our trip to Texas for Thanksgiving to have been our last visit. At the moment, I am keeping an open mind though I still think it is doubtful. One of my memories of our last visit was that she didn’t respond to being in Texas the way I expected. It didn’t seem to mean anything. She didn’t recognize anything and never knew where we were. I am torn now and will probably be the same way when I have to make a commitment to go or stay here. I definitely don’t want to deprive her of one more trip home. It’s just too early for me to make that decision.

There is one thing in the back of my mind that might tip the scale. It’s the apocryphal story of a man who pays daily visits to the nursing home to see his wife who doesn’t remember him. Someone asks, “Why do you visit everyday if she can’t remember you?” He answers, “Because I remember her.” As I consider that story, I think that even if she couldn’t full appreciate the trip, I would know that I brought her back home one last time for a special moment with family.

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From Fear to Joy in 60 Minutes

At 9:45 this morning, I saw on the video cam that Kate was awake and went to the bedroom. When I got to her, I discovered that she was scared. It turned out that she had been awake for a while and wondered where I was. She never called for me, or I would have gone to her right away. I also did not detect any movement that would suggest she was at all worried. When I apologized, she said, “Don’t ever do that again.” I told her I wanted her to know that I would never leave her alone and that I wanted her to call me if it happened again. She said, “I didn’t know where you were or where I was or what was happening.” Her memory of this fearful experience lasted a much longer time that I would have imagined. After she was dressed and taking her meds before leaving the house, she mentioned this again. This would have been about thirty minutes later. She said very sweetly, “I know you didn’t mean it, but don’t ever do that again – whatever your name is.”

Before leaving she saw a piece of ceramic tile that one of our grandsons had painted as a marker for our dog Chico’s ashes. We used to keep in a flower bed in our back yard where we had scattered his ashes. She didn’t know what it was, but she thought it was pretty and asked me if she could take it with her in the car. Of course, I said she could. We had enough time to stop by Panera for a muffin before an 11:20 appointment with her ophthalmologist . She asked if it would be all right to take it in the restaurant. I told her that would be fine. We put it on our table.

At Panera we had one of those nice conversations that occur periodically. She was in a very good humor and talkative. We talked about our lives and how fortunate we have been. She again showed how perceptive she can be when she said, “If you are with someone you like, it doesn’t matter where you are.” I agreed. After all, this was one of those moments that are special. We were just at Panera having a blueberry muffin, but it is the kind of moment I will treasure in the days ahead. How grateful I am that this is possible so late in her journey.

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Kate’s Intuitive Abilities

I talk a lot about deriving much of our pleasure from Kate’s intuitive abilities. That frequently involves music and our social activities. There are lots of other signs of her intuitive abilities that I don’t say much about. Let me tell you about a few experiences that occurred yesterday.

She got up to go to the bathroom shortly before 6:00. She was especially groggy. I walked with her to show the way. I asked if she wanted fresh underwear. She said she did. Then she walked over to the sink to wash her hands. She turned to me, smiled and said something I can’t quite remember. I know what it meant though. It was “We didn’t envision this when we married.” She not only retained her sense of humor, but she was able to grasp the situation in a way that I might not have thought she could.

As I walked her back to bed, she smiled and said, “Are you havin’ fun yet?” She thanked me as I pulled the covers over her.

Several hours later as I was putting drops in her left eye (her cataract surgery is tomorrow.), she had trouble understanding that I wanted her to tilt her head back to make it easier. She got a little irritated with me. I told her I was sorry, that I was just trying to help her. She said apologetically, “I know you were.” She was sorry for the way she spoke to me. This took an understanding and appreciation of what I was trying to do, and she felt she had hurt me and was sorry.

She was up at 9:30. That gave us time for a trip to Panera for her muffin before lunch. We hadn’t been seated long before she asked my name and hers several times pretty close together. We got into a conversation about our parents, mine as well as hers. That led her to say how fortunate each of us has been, not just in the parents we had but in so many other ways. She began to talk about people who haven’t been as lucky. As she talked, she got tears in her eyes and choked up. She couldn’t continue her thought. She was overcome by emotion. She has never been one to shed tears easily. Alzheimer’s has changed that.

She was finishing up her muffin when I said we would be going to lunch in a while. She said she was full and might not want to eat much. Then she said, “Knowing me, I might change my mind as soon as we are there.” I was struck by that because it is so apt. She frequently says she won’t be able to eat or eat much before going out but changes her mind once we are there. She has remarkable insight about her own personality as well as mine even when she can’t remember either of our names.

She was very talkative at Panera, and, at lunch, we had another great conversation. She (we) talked almost the entire time we were there (almost two hours). Only half of that conversation was about Frank Sinatra. <G> Just kidding, but I didn’t even try to count the number of times she asked his name. One time after I told her, she said, “I don’t know why I can’t remember his name. I ask you all the time.” I said, “But you don’t forget that you don’t like him.” She agreed.

Like other conversations, this one focused heavily on feelings, things that don’t require a memory of facts. Her parents and mine figured in the conversation. We expressed our feelings about them. We are both grateful for our parents and the way we were raised.

One time when our server stopped by to check on us, I mentioned how much we had enjoyed the Chicken Marsala. In a few minutes, she returned with the chef (a woman) who had prepared it for us. We thanked her. She said to let her know whenever we are there and that she would take care of us. Kate and I were both touched that our server thought to introduce us.

After the server walked away, Kate said, “I like you.” Before I could say “I like you too,” she said, “I like you a lot.” That’s when I got to say, “I like you a lot too. In fact, I love you.”

On the way home, Kate kept saying how much she enjoyed the CD I was playing. It is one I bought several years ago in Memphis for $5.00 when we were visiting Jesse and her family. It’s a compilation of songs from a variety of Broadway shows. She likes it so much that it is almost the only one I have played for the past few weeks. I am amazed that she remembers so many of the words, especially the key phrases. I know from things I have read about music and people with dementia, Parkinson’s, or strokes that music can facilitate the words as well as the music; however, hearing her sing the words always surprises me.

An interesting sidelight is that this CD does not provide the names of the singers. Every time a song plays, Kate asks me to tell her who is singing. Each time I tell her I don’t know, and the CD doesn’t give any of the singers’ names. That is something she never remembers, so she asks her question a lot going to and from place to place.

When we got home, I built a fire and we spent the afternoon relaxing. Kate lay on the sofa and frequently talked about the things she could see and liked both inside and outside. As usual, she mentioned the trees that she could see through the skylights. It’s interesting that she responds to the trees in the same way she did before they shed their leaves for the winter. She often says, “I love all the green.” She also talked about the music, the fire, and a painting we had purchased on trip to Quebec City years ago.

The entire day she was especially appreciative, not just for my care for her but for all of her experiences. Her intuitive abilities were not only alive and well but very active.