Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

The Fading Allure of the iPad

I made the following entry seven years ago on August 18, 2012.

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. 

Until I checked my old journal entries this morning, I hadn’t realized that Kate had been using her iPad for so long. At the time I got it, her primary “self-initiated” sources of pleasure were working in the yard (as much as six hours a day) and working on her computer. It’s been five or six years since she gave up the computer. It had become too difficult for her to operate. For a while the iPad was a mere adjunct to her yardwork. It’s been almost three years since she gave that up. That wasn’t because it was too hard. It related to the fact that she had pruned all the shrubs so severely that there was little for her to do. That was the major part of her yardwork although I have recently discovered that she must have been weeding as well. I say that because weeds had never been a big problem until the past two years. She obviously had been keeping them at bay.

When she stopped working in the yard, she was left with the iPad as her only source of amusement. The only thing she uses it for is to work jigsaw puzzles. She has used it morning, noon, and night. I haven’t kept track of the time, but I know that sometimes she must have spent as much as eight hours a day working puzzles.

I charge the iPad every day for her, but it is only in the past week or ten days that I have been especially attentive to the battery life left when I start the charge. My guess is that the average battery life has been somewhere between 25% and 45%. Sometimes it has been totally exhausted. Recently, the figures have been 89%, 88%, 45%, 91%, 75%, 45%, 92%, and 65%. That is a clear indication that she is using the iPad less now.

There are two primary reasons for the change. The first is that she is having increasing difficulty operating the program. The most common problem is that she gets into the store to buy more puzzles when she completes a puzzle. Just this morning, I taped a piece of paper over the upper right hand corner of the display. That is where the icon for the store appears. Like so many things, that could create another problem, but it should be one for me and not her. On other screens there is an “X” icon to exit that page and go back. I don’t believe she normally gets to one of those pages. If I can address that problem, it should make Kate’s life and mine a lot simpler.

There are other problems that I can’t prevent as easily. One of those is forgetting what to do with the scattered pieces. Thus far when this happens, I have been able take care of it by telling her just to put the pieces together to form a complete picture. Another involves her eyesight. She can’t see the lines of the frame against which the edge pieces should be placed. She seems to get there by getting near the line. When she is close enough, the piece will lock in place and can’t be moved. The other issue is that she is unable to associate similar colors or shapes to figure out where a given piece might go. She just seems to keep trying until she gets it right. Similarly, she can’t distinguish between the background color and design to identify places a puzzle should go. I have worked with her enough on this issue to conclude that is impossible for her to learn because of her poor vision.

Last night was particularly frustrating for both of us. I am surprised she persisted as long as she did. In fact, she only stopped working her puzzles because I suggested that she might be getting tired, and it was time to get ready for bed. Prior to that, she had worked on her iPad more than an hour. I was watching (trying to watch) the evening news. Throughout that time, I got up and down from my chair every few minutes to address a problem.

As you would expect, I am concerned about her giving up the iPad. That would create quite a void in her life. It would also add greater responsibility for me to keep her entertained. She does enjoy her family photo books, but they provide a different experience. They are not something that holds her attention as long as jigsaw puzzles. The puzzles also have the advantage of being more interactive. They require her to think more. While I can’t know for sure, I have an idea that she derives some sense of satisfaction from completing them. In addition, she likes the beauty of the puzzle pictures themselves.

One thing I know is that I won’t be able to control much of what happens. It will be helpful if my taping over the store icon works, but the other problems are more a function of the disease itself. I’ll just have to wait and see what happens.

I spoke too soon.

Not long after uploading my previous post, I went back to the bedroom. I saw that Kate was awake and walked over to her. She was having a similar, but milder, attack like those she experienced the past four mornings. I said, “Are you all right?” She said, “I think so. I don’t know.” I told her I would like to help her if I could. I asked if she would like me to bring my laptop to the bedroom and stay with her. She nodded. I returned and put on some music.

She never went back to sleep. I doubt that she had been to sleep since getting up to go to the bathroom at 7:45. Around 9:30, she sat up on the side of the bed. She was still confused, but she didn’t seem to be troubled the way she was earlier. She said, “What now?” I told her I thought it might be good for her to get dressed and get her something to eat. I mentioned getting a muffin. She didn’t say anything, but she looked as though she had never heard of a muffin.

I helped her to her feet and told her I wanted to show her something. We walked hand-in-hand to the hallway outside our bedroom. We stopped at a picture of her grandmother. I told her this was somebody very important to her. Then I explained that she was the first member of Kate’s family to attend TCU. She was pleased about that. I was glad to see her response because a few days ago I mentioned TCU, and it didn’t mean anything to her. That was a first.

After talking with her about her grandmother, I focused her attention on the next photo. It was her mother when she was around 19 or 20. Kate didn’t recognize her but was taken with the picture. As she often does, she noted her mother’s eyes and smile. She commented more extensively than usual on this and other pictures that I showed her. I can’t remember exactly what she said, but she interpreted her mother’s personality based on what she saw in her mother’s face. By this time, she seemed just fine.

We went on to two other photos, one of her grandfather on her father’s side and then her father. From there we walked into the family room where I showed her a picture of our daughter’s twin boys when they were about 5 or 6. As we entered the room, she said, “You’re really helping me.” She always likes children whether in person or photos. Thus, she was enthralled at the twins’ picture. Again, she tried to interpret their personalities from what she saw.

I took her to the sofa and asked her to sit down so that I could show her something else. I picked up the “Big Sister” album and called her attention to the cover picture. This time she didn’t recognize either herself or her brother, but she was taken with the children, especially their eyes and smiles.

We talked about them for a few minutes. Then she said she was cold. She was still in her nightgown and bare feet. I suggested we get her dressed. I helped her stand up and, as we walked to the bedroom, she said, “I’m bouncing back thanks to you.” I was particularly struck by her recognition that she was “bouncing back.” It had been thirty minutes since she had gotten out of bed. I was surprised that she could remember how she felt that long ago. Once again, we had found our way out of what might have been a crisis. It’s a relief when this happens.

Another Morning of Anxiety

As I have described the past three mornings, yesterday Kate’s memory was almost completely blank again. In some ways this isn’t unusual. Over the past year she has often not known where she is or who she and I are when she wakes. The difference the past few days is the anxiety that accompanies it. In the past, I would tell her. Then she seemed to be all right even though she might ask the same questions again right away. During each of the past few days she has been more concerned, even frightened, about not knowing these things. The first experience on Saturday was the most intense. It also lasted an hour.

Her experience yesterday was different in that it was milder and shorter in duration. She was very sleepy. I didn’t attempt to show her any pictures of her family. I focused primarily on comforting her. I did play the same music I had played the previous days. I got in bed with her. She began to relax and fell asleep within fifteen minutes. I brought my laptop back to the bedroom and stayed with her until it was time for lunch. She was fine when I got her up.

We met one of our associate pastors and his wife for lunch at Casa Bella. Kate has always liked him and his wife. She wasn’t talkative, but she enjoyed being with them. They probably would never have imagined the state she was in a little earlier. Her ability to bounce back is another way in which we have been fortunate.

This morning at 7:45, she started to get up. I went to the bedroom. She was unusually alert and seemed like she didn’t need my help. I walked her to the bathroom and back to bed. She thanked me and said, “You’re really a nice guy.” She is asleep again. We’re off to a good start. I’m hopeful that she will be fine when I get her up for lunch.

Morning Confusion Continues

I was just finishing up yesterday’s blog post when I heard Kate call my name. I started for the bedroom when I heard her call again. She didn’t smile when I entered the room, but she was relieved to see me. She was experiencing a milder anxiety attack than she had a couple of days ago. She didn’t appear to be as frightened, simply confused. It was another case of her memory’s being almost blank. She felt insecure and kept expressing that she felt better that I was with her. Despite her calling me by name, she didn’t remember either my name or our relationship. She clearly felt secure with me. She specifically commented that my tone of voice made her feel better and said she knew that I wouldn’t let anything happen to her.

I brought the “Big Sister” album to her. She recognized herself in the picture on the cover; however, I ran into a problem when I tried to go through the book with her. She was lying flat on the bed with her head on a pillow. It was awkward holding the book so that she could easily see the pictures. We decided to look at it later.

Then I started talking about her family. Although she was interested, it was too much information for her. As I had done the past two mornings, I played music for her. We turned our attention to it. The impact yesterday was greater than I have seen before. They were all choral pieces with beautiful harmony and soothing melodies. She was particularly moved by “Danny Boy,” “Deep River,” and “Swing Low Sweet Chariot.” Most of the time she held my hand or put her hand on my arm. A few times she asked me not to talk. She just wanted to listen to the music. At one point she shed a few tears. It was a very tender moment for both of us.

It was also a sad moment. She was still confused though uplifted by the music. She continues to have a sense that she is not all right. I think back to the times when I have heard people say, “At least she doesn’t know.” Kate may not know the name for it, but she knows she has a problem. How long will that last?

I stayed with her for over an hour. She was feeling better. I asked if she would like to go to the bathroom. She got up easily and took a shower. Most of the time, she didn’t know my name or our relationship, but she was quite comfortable with my helping her with toileting, showering, and dressing.

She was ready early enough for me to take her to Panera for a muffin before the sitter came at noon. Kate didn’t express any concern when Cindy arrived and I left for the Y. When I got home, they weren’t there. Kate hadn’t wanted any lunch until 3:00, so they had gone out for lunch. I am sure that had something to do with her having had a muffin not too long before Cindy arrived. I also believe Cindy is more passive with her than I would like. I think another sitter might have said, “I’m hungry. Let’s go get some lunch.” Kate might have responded more positively to that.

Kate may not have rested before they went to lunch because she was tired when they got back. I let her rest for an hour and a half before going to dinner. She didn’t sleep during that time. She just relaxed while listening to the music I played for her. She was ready for bed earlier than usual but was awake when I got in bed a couple of hours later.

During the night, she apparently had a dream. She was kicking her feet. I put my arm around her, and started to comfort her. She misinterpreted me and said, “No” in a very stern voice. Then she grabbed my hand and squeezed it very hard and held it for several minutes before she relaxed and dropped it. I don’t think she had been awake at all.

There is a lot going on in her brain right now. I just wish I could fully understand it.

A Better Day, But Moments of Confusion

The way yesterday started was far better than the day before. I woke Kate just before 11:00. She smiled and was at ease. She was enjoying the music I had selected, but she wasn’t eager to get out of bed. Once she was up, everything went smoothly.

While we were eating, she said, “I don’t even know who my parents are?” She said this without any obvious sense of anxiety. It was said as though she were telling a friend about her having grown up without parents. As I told her about them, she was amazed and said, “I didn’t know any of this.” This conversation continued off and on throughout our meal.

We also had a slight rough spot during lunch as I was eating a bowl of tomato basil soup. When our server placed it on the table, she said the bread was better when dipped in the soup. Kate was eating bread at the time. I asked Kate if she would like to try it. She dipped her bread in the soup and then asked me to put some soup on her bread plate. I did, but she didn’t use it. Thinking she might not have noticed, I asked if she was going to dip her bread in it. She didn’t understand what I was talking about. I explained that she had asked me to put some soup on her plate for her bread, but she wasn’t using it as a dipping sauce. She felt as though I was scolding her, got a sad look on her face, and apologized. I told her she hadn’t done anything wrong; it was just a case of miscommunication. She was hurt, but it didn’t last long.

On the way home, she mentioned that she didn’t know her name. I told her and then mentioned her parents. She wanted to know their names. After telling her, she asked if I knew them. Then she asked if they knew her. I explained that they did and that they had loved her. Then she asked if she had ever known them. She showed none of the fright she had the previous day though she clearly conveyed a sense of regret about not remembering them.

She was tired when we got home and wanted to lie down as soon as we walked in the house. I got my laptop to jot down a few notes and sat in a chair across from her. In a few minutes, she began to cry. I walked over to her and asked what was wrong and if the tears were those of joy or sadness. The answer was joy. She said, “This is the first time I have ever really felt at home.” I didn’t push her to explain. I was just glad she was happy.

Before going to bed, she spent quite a while, at least twenty minutes flossing and brushing her teeth. She said she thought she needed to see a “doctor.” She feels something caught between her teeth and can’t get it out. I helped her floss but didn’t detect anything. I don’t know why, but I don’t see a dental appointment on my calendar. We always make one at the end of each visit. I’ll check on that this morning.

After she was in bed, she started pulling her hair as she does so often. It wasn’t long before she said, “Richard, (yes, she called me by name).” I said, “Yes.” She said, “I want to thank you for your patience.” I told her I was just happy to be able to help her. A few minutes later, she called my name again and said, “You know what makes it all worthwhile?” I said, “What?” She said, “You.” I said, “And you make my life complete. We made a good decision when we decided to get married.” In another few minutes, she said, “Hey!” I said, “What?” She said, “I’m glad to be here with you.” She repeated this five minutes later. This should give you a taste of one of the reasons I say that we have gotten along “remarkably well.” She is so appreciative, and I am working to be sure that she stays that way.

She was talkative when I joined her in bed. She continued to pull strands of hair for a long time. She said it was a lot of work to do this, but pays off in the end. She also talked about her teeth. She said it’s a small problem when compared with the big problems that so many other people face. She was very relaxed and happy. It was a great way to end the day.

Not our Best Day: Kate’s Most Intense and Long-lasting Anxiety Attack

Yesterday started out well. I slept until almost 6:00, had breakfast, took a forty-minute jaunt around the house, watered plants, and wrote a new blog post; however, the pleasantness of the morning ended abruptly when I went into wake Kate for lunch. She had her worst anxiety attack. It was more intense and longer in duration than the earlier ones – about an hour.

She was frightened and unable to explain what she was experiencing. On the previous occasions, she has said things like “I don’t know where I am or who I am or anything.” This time the only thing she said was “I don’t know what’s going on.” She was shaking. Not surprisingly, she didn’t know my name or our relationship. I asked her if I seemed familiar to her. She said I did. I held her hand and said, “I hope you think I’m a nice guy.” She said she did. Despite letting me hold her hand, her attitude toward me was one of “approach/avoidance.” At one point, I started to put my arm around her. She resisted. It was as if she weren’t quite sure about me, but I was the only “thing”/person she recognized. There was no one else she could trust.

During the hour she and I were in bed, she repeatedly asked my name but couldn’t remember it. Only a few minutes passed before I put on some music by the Susquehanna Chorale. I selected some of her favorite pieces, “Shenandoah,” “Danny Boy,” “Loch Lomond,” “Deep River,” and “Swing Low Sweet Chariot.” I followed that with a series of John Rutter arrangements that were very soothing. I talked to her as the music played. I tried to speak slowly in a comforting voice. I mentioned many of the things that I know she likes – our courtship, marriage, and family.

Thinking that it might help to trigger a few memories, I encouraged her to get up and let me show her the house and take her to lunch. Each time she would clutch herself and tell me that she was scared and didn’t want to get out of bed. I’m not sure whether the music or my talking calmed her, perhaps both, because she gradually felt more comfortable. After a while, I asked if she would like to go to the bathroom. She did. Within moments of getting up she seemed to be better. The crisis was over.

When we got home from lunch, Kate was tired. She rested for over two hours. During that time, I asked if she would like for us to look at one of her photo books or go to Barnes & Noble. She said she just wanted to rest. About an hour before going to dinner, I picked up her “Big Sister” album that her brother Ken had made for her. I walked over to the sofa and showed her the cover picture. She didn’t show the usual excitement. I pointed to the picture of her and asked if she knew who that was. She gave me a faint smile and pointed to herself. Then I said, “Don’t you like the smiles?” She did.

I was standing in front of her and turned the book so that I could leaf through it. I turned to the first page that has a photo of Kate with her mother and father. I said, “Here’s a picture I like.” I showed it to her and said, “Why don’t you sit up and let me sit down beside you. We can look at some of the pictures together?” She still didn’t express any enthusiasm, but she agreed. By the time we got through a couple of pages, she finally responded the way I had hoped. She was getting into it. Her mood began to shift toward cheerfulness. We spent almost an hour going through the book. She was fine again, and we went to dinner. She remained in a good humor after that although she was tired and went to bed a little earlier than usual.

It was just over a year ago when Kate had her first anxiety/panic attack. Since then she made have had three or four more. Thankfully, they don’t come often. Each time one occurs I am a little surprised because I haven’t been able to see it coming. I think all but one of them occurred after she had been sleeping or resting. The one yesterday was the most intense and long-lasting. I don’t like seeing her suffer in this way and hope she doesn’t have another experience like it. I’m just glad that I am still able to find ways to “bring her back.”

An Example of Eyesight Problems and Dependence

The other day I commented on my concern about Kate’s eyesight. At Casa Bella the other night we experienced another example of the problem. In this case, it illustrates the impact it can have on her and also her dependence on me.

The room had been rearranged to accommodate the needs of the various sized groups. The table for our group was set up for nine. That immediately caused me to wonder how Kate would adapt to a larger group. More people at the table means it is more difficult for her to understand the conversation. That makes the whole dining experience less comfortable for her.

I have always seated Kate on the side of the table that would give her the best view of the musicians. This time, however, her side was close to the back wall of the room, and she would have been in the middle with two people on either side of her. I decided it would be easier for her to get in if she took the side with her back to the musicians. The way the table was positioned I thought she could easily turn to see them as they performed.

Of course, there was no problem during the first hour before the music started. We were able to order and eat our meal while conversing at the same time. Once the music started, Kate turned her attention to the musicians. It wasn’t long before I noticed that she had a worried look on her face. She began to look around the room in all directions. I realized that she had lost sight of me and was concerned. She turned to the man beside her and said, “Have you seen my husband?” He didn’t hear her, so he didn’t respond. I reached my hand across the table and touched her arm. She looked across the table but didn’t recognize me. I grasped her hand. She looked more closely. Then she realized it was me. She heaved a great sigh of relief. I don’t know that anyone else observed her, but she was very noticeably disturbed when she didn’t see me and equally relieved when she finally did. This was another occasion when I felt like I will soon need to change our seating arrangement. I am going to try to hold off a little longer while I consider what is best for Kate. At the moment I still think a table for two would be best in the long run.

Right now there is something else I am thinking about. Casa Bella is preparing to celebrate its eightieth anniversary. They are planning a kickoff dinner in September and have made arrangements with the city to block off the street in front of the restaurant for a special Italian dinner. There won’t be any seating in the restaurant itself. I have made reservations, but I am concerned that being in such a large crowd might be overwhelming for her. I imagine they will have musical entertainment, but it won’t be like the more intimate venue inside the restaurant. I have avoided situations like this for more than a year. On the other hand, we feel close to the owners of the restaurant and the people we have met at the regular music nights. I hate to miss this event.

Apart from Kate’s uneasiness because she didn’t see me, we had a great night. Kate thoroughly enjoyed the music even more than she has at a few other recent music nights. I was happy about that.

As the situation at Casa Bella illustrates, her dependence on me is increasing significantly. It is obvious in a variety of situations. One is in her expressions of relief when I come home after the sitter has been here. I also see it around the house when she doesn’t know where I am and doesn’t remember the various rooms where I might be. Yesterday, for the first time, she thought I might be leaving her in the house alone. She had gotten up early again and taken a shower. Then she got back in bed. I told her I would get her up when it was time for lunch but to call me if she needed me. She looked scared and said, “You’re not going to leave me alone, are you?” I said, “I would never leave you alone. I will be in the kitchen.” She was greatly relieved.

Confusion, but in a Good Mood

Yesterday morning was a time of significant confusion for Kate. It was similar to several other moments when her memory seemed to be completely blank. She was concerned but showed no signs of the panic she has had in similar situations. I was in the kitchen when I heard her call my name over the video cam. Yes, she did remember my name. This was one of those times the camera paid off. Kate called to me in a somewhat soft tone of voice, nothing like a shout or scream. The microphone is very sensitive. I heard her immediately and went to her.

At first, I didn’t sense the degree of her confusion. As she does so often, she asked me where we were. I told her we were in Knoxville. She looked puzzled. She asked why. I explained that we live here and that “this is our house.” Then I said, “You look like you are a little confused. What could I do to help you?” That opened the door to an hour-long conversation during which she asked questions (often the same ones over and over) and I gave her the answers. We talked about her parents, my parents, and our children and grandchildren. The topics also included how we had met, places we had lived, her work and mine, and other special things we have done.

Several times, I asked if she might like to get up. She declined saying, “I would rather hear you tell me about my family.” The last time I asked, she agreed it was time to get up. She took a shower and got back in bed for another hour. When I got her up for lunch she was fine.

I don’t know how confused or clearheaded she was about our relationship. I only know that she called my name when she wanted me. She was in a pleasant mood throughout the episode and for the balance of the day. This is another good example of the transition she can make extreme confusion to a more normal state. It seems clear to me that when she wakes up most of her connections to the world around her are dormant. As she receives the information I give her and as she directly experiences more of her everyday life, she feels more at ease.

That doesn’t mean she knows where she is or the people around her. Increasingly, she thinks we are staying in some other place than our home. That was true when we got home last night. In the car she asked where we would be staying. I told her we would be in our very own home. She asked if it was very far. When we drove up to the house, I said, “This is where we will be staying.” She admired everything she saw and never realized we were at home, but she was happy.

Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.