Life is Still Good, But Changing

Yesterday morning, I replied to a Twitter friend who posted the following message.

Today is my fourth year anniversary since my diagnosis of Posterior Cortical Atrophy which is a variant of Alzheimer’s Disease. It affects my vision more than memory. In 4 years I’ve done really well, achieved a lot and still going strong. Power to me.

I congratulated her, and she sent the following reply.

Thank you, Richard. People think it’s strange for me to celebrate each anniversary, but it’s my way of coping and surviving.

I admire the way she is coping with her disease. It doesn’t mean she is free of all the frustrations that accompany dementia, but she is working to make the best of it. I have found that approach personally beneficial and have tried to capture the joy that Kate and I experience. There are times when I feel I may not fully convey the reality of the rough patches we also experience, and I want to make clear that we are now facing the most significant challenges that have occurred since her diagnosis. I have mentioned each of them at sometime in the past, but all of them are becoming more common.

NOTE: I completed this part of the post just before 11:00 yesterday morning when I went to the bedroom to waken Kate for lunch. My intention was to finish it with examples of some of the rough spots. Our experience yesterday led me to use it as an example. I wrote about that in the following section when we returned home from lunch about 2:30.

2019-12-18 (3:00 p.m. EST)

Another Recovery Following a Rough Start

It’s been about a year and a half since Kate first showed signs of anxiety or panic related to not knowing where she is, who she is, or what to do. Thus far I have been able to relieve her, but each time this happens I wonder how long I will be successful. From the beginning, simply trying to comfort her, rather than giving her information, has seemed to be the key factor in each recovery.

This morning (now yesterday) was no exception. About 10:45, I put on some gentle Christmas music to wake her. Fifteen minutes later, I went in to see if she might be ready to get up. She was awake, but it didn’t take long to discover she was confused and very uneasy. She wasn’t cheerful, and she didn’t greet me at all. I told her I would like to take her to lunch. She shook her head to say no. When I asked if I could help her, she gave me the same response.

I told her she looked frightened and asked if she were. She nodded affirmatively. I told her I would like to help her. I could tell that she didn’t recognize me and decided not to push her but just talk to her very gently. It wasn’t long before I said, “I don’t think you remember me.” She confirmed that. Then I gave her my name and told her I had I had known her a long time and could help her with any questions. I also asked if she felt she could trust me. She said yes. I said, “Other times when you have felt this way, you have felt better after you got up and dressed.” She wasn’t ready. I asked if she would like me to read something. She did, and I got Charlotte’s Web and read a couple of chapters. When I finished, I got up from my chair. Her eyes were open, and she looked at me. I spoke to her. She didn’t respond at all. She looked very strange, like she was asleep with her eyes open. Then her eyes closed, and she was asleep. This was the first time I had ever seen her like this. I let her sleep a little longer and then went back to wake her. When I returned, I asked if she thought she could get up for lunch. She asked about her clothes. I told her I had them ready for her.

She was still uneasy as she got out of bed. She didn’t want my help although she did want to hold my hand as we walked to the bathroom. She took a long time brushing her teeth. She got irritated with me when I tried to help her. I pulled back and let her take her time. She didn’t want help dressing and was irritated when I tried to help. I apologized for pushing her. I feel sure she didn’t recognize me and felt uneasy about dressing in front of me. Ultimately, she needed my help and accepted it; however, I didn’t take over. I let her do as much as she could.

When she was dressed and walked into the family room, her mood quickly changed. She stopped to look at the poinsettias and the back yard and commented on how beautiful things were. We walked to the kitchen where she took her morning meds. She was just fine and has remained that way since. We had a nice lunch, and she has rested a good bit since we returned home. I am hopeful that the evening will go well, but I know that we may not be so fortunate in days ahead. In the meantime, I am happy that we experienced a good recovery today.

NOTE: I finished the section above about 3:45. I started the following part last night at 9:20 and finished this morning.

At 4:30, I saw that Kate had opened her eyes. She seemed to have rested comfortably for almost two hours. I know she didn’t sleep that long because I saw her open her eyes and look around several times and spoke with her a couple of times. This time I asked her if she would like me to read something to her. She wasn’t enthusiastic and said, “What would you read?” I mentioned The Velveteen Rabbit, but she wasn’t interested. I mentioned Charlotte’s Web, and she accepted that. I read about twenty minutes. She didn’t respond at all. I went over to her chair and kneeled down beside her and asked if she would like me to take her to dinner. I encountered the same experience we had had that morning. Her eyes were open, but she didn’t respond at all. Again, it looked like she was sleeping with her eyes open. Shortly thereafter, her eyes closed. I waited a few minutes. Then I asked if she would like to go to dinner. She asked me to go without her. I continued to talk softly to her and told her that I didn’t want to eat without her. She agreed to go.

I was sure by the way she related to me that she didn’t know who I was. Before we left, she confirmed my suspicions when she asked who I was. On the way to dinner she asked my name. When I told her, she said, “Nice to meet you, Richard. Do you know my name?” After I told her, she tried to repeat it and failed. She asked me again. She tried again. We went through this several times, and she ended up saying her name about three times in a row and expressing confidence that she now might remember. We had a pleasant time, but she knew neither my name nor our relationship and was a little more formal or distant that usual.

On the way home, she asked where we were going. I told her we were going home. She wanted to know what that meant. When I told her we lived in the same house, she said, “But where will you be?” I told her we would be in the same bedroom. She was very uncomfortable with that. I promised her that I would not create a problem and that we had lived together a long time. She still seemed a bit puzzled.

When we got home, she didn’t recognize the house. Once inside, however, she must have felt a little more comfortable because she started to behave the way she always does. I am not sure that she knew me as her husband, but she was perfectly comfortable as I got her ready for bed. It could have been that she was totally dependent on me as to what she should do and simply had to trust me.

I stayed up another hour after she went to bed. When I got in bed, she was glad. She was perfectly comfortable with me. She was like she is any other night. Did she know me? I don’t know if she remembered my name or our relationship. We had just finished a full day during which she didn’t. That is a new record.

The good news is that the day ended on a happy note and that she was as comfortable with me as she has ever been. Despite challenges like these, we focus heavily on the good times we have, and I intend for us to continue doing so as long as we can. At the same time, I can’t deny the reality of Alzheimer’s. It takes its greatest toll on Kate, but that, in turn, has an impact on me. I remain optimistic about how I will adapt as the disease progresses, but the most difficult part remains watching her lose so much of her ability to survive on her own. It is especially hard in those moments when she suffers as she did off and on yesterday.

The Therapeutic Value of Music and Reading

Kate and I have always enjoyed music and, especially, live performances. They have been fully integrated into our lives since her diagnosis. To start with I didn’t think of this as therapy. We were simply enjoying ourselves. A year or two later Kate experienced several panic attacks as a result of my rushing her to get to events on time. One time she hadn’t calmed down when we got in the car to leave. I turned on the second movement of Brahms’ violin concerto. We didn’t talk while it played (about ten minutes) When it was over, she was calm. Since that time, I have used music a good bit to put her at ease even if she isn’t having a panic attack. It makes her happy.

This past Sunday we attended a Christmas show that achieved the same effect. I think she must have been tired because she had gotten up early and did not rest after lunch as she usually does. I know she was a little grumpy when we walked into the theater from the parking lot. We didn’t walk far, but it was too far for her and also chilly. We sat in our seats for ten to fifteen minutes before the show began. She doesn’t like waiting and complained most of the time. I assured her she would like the show, but she was not convinced.

Her mood shifted immediately when the show started. The cast was large and included a number of young children and teens along with the adults. The music, of course, was the key factor. She audibly expressed her enthusiasm after each song. That set the stage for a very nice dinner experience.

It may well be that reading will be another tool in my arsenal to lift her spirits. I looked at my reading to her as a way to occupy her time when her use of the iPad dropped to a few hours a week after years of six to eight hours a day. That night I was looking for something more than amusement. She was grumpy again after dinner. As she began to get ready for bed, she pointed to the ceiling fan and asked me to “turn that thing off.” I told her it wasn’t on. She said, “Well turn it on.” I did, but she didn’t like it and told me to turn it off again. I started to help her with her nightgown, and she said, “I can do it myself.” As she does so often, she apologized for the things she had said, but she continued to be grumpy.

After she got in bed, I asked if she would like me to read The Velveteen Rabbit. She said she would. She didn’t say a word while I read. That was unusual. I wasn’t sure that she was listening and wondered if she might have fallen asleep. When I finished, I said, “Did you enjoy that?” She told me she did, but it was the tone of her voice that was the clearest indication she was all right. She also said that she remembered some parts from the “other time” I had read it to her. I felt good about that because she didn’t recall the book at all previously. I suggested that it made a good bedtime story and that we might do that again sometime. She liked the idea. I was glad. I found it to be a nice way to end our day together. Reading, like music, is a “Win/Win” for both of us.

All’s Well That Ends Well

As I was thinking about waking Kate at 10:45 yesterday morning, I heard her say something. It sounded like, “Are we going to get something to eat?” I was in the kitchen and walked to the bedroom where I discovered that she was both wide awake and cheerful. I said, “Good morning. I’m glad to see you. You look happy this morning.” She said, “I am happy and you are too.” I said, “I think we are both happy people. Maybe that’s what has kept us together so long.” She agreed. Except for her needing/wanting my help getting her up, she didn’t seem like a person with Alzheimer’s at all. There was no sign of confusion. That didn’t last long.

When got to the bathroom, she noticed a photo of our daughter Jesse. Kate loves this picture but never knows who the girl is. We went through our regular routine. She said, “Who is she?” I said, “your daughter.” She asked her name. Then she said, “She’s beautiful.” I said, “Just like her mother.” She said, “Who’s her mother?” When I told her, she was surprised and asked how that happened. I told her that she and I are married, and we had two children. This was one of those times she couldn’t accept that we are married, and I dropped the subject.

After finishing in the bathroom, I got her dressed quickly and easily. Everything was going well. Before leaving I said something that irritated her. I don’t know what it was, but I decided not to find out. She can’t ever explain. We listened to music all the way to lunch. Everything was fine when we got to the restaurant, and we enjoyed our time together while eating. Just before leaving, I misunderstood something she said, and she was irritated again. We listened to music all the way home. She was fine arrived.

She asked what she could do. I gave her two options: work on her iPad or we could look at one of her photo books together. She chose the iPad. I was a little surprised because she has been going directly to the sofa to rest. It was less than fifteen minutes before that was what she wanted. This was one of those occasions when she actually slept. She was asleep thirty to forty-five minutes.

Then she sat up and appeared very alert. It looked like she was going to get up, and I asked if she wanted to go to the bathroom. She said she thought she would walk around outside for a while. That was a big surprise. She hadn’t shown any interest in doing that for almost two years. She surprised me again when she said there is a man she sees working in his yard and she would probably talk with him a little. She was actually picking up on a memory from the past. In both our present and past houses, we have had neighbors who work in their yards a lot. Kate had often see them working, and they would talk a while.

I went with her. For the past year, I’ve had someone working to restore the flower beds after her excessive pruning of the shrubs. I took out eighteen that were dead or “beyond repair.” The weeds had also taken over. It’s beginning to take shape again, and I was eager to see her reaction.

Thankfully, we didn’t get too far. She quickly found a hydrangea and started pulling off the flowers and some of the branches. It is late in the season, so I wasn’t bothered by that. I was, however, concerned that she might start doing the same with some of the shrubs that are coming back. After a short time, she wanted to go back inside to rest.

When she was ready to get up, it was time for dinner. As we prepared to leave, she wanted to take several of her photo books with her. Something she said made me think she thought we had been visiting and were now leaving for home. I told her we were just going to eat and would be back soon.

She was quiet at dinner and didn’t seem to enjoy her meal. She had grilled shrimp and sides of fresh fruit and a cucumber, tomato, and feta cheese salad. I had a Greek salad with grilled shrimp. Knowing she loves shrimp, I asked if she would like some of mine. She said, “What’s that?” I picked up one and showed her. Then I noticed that she was putting scraps from her two sides on a paper napkin. I took notice because she usually puts them on the table.

Then she said, “When are they coming?” I said, “Who? I am not aware of anyone who is coming to see us?” She became irritated with me because she couldn’t tell me, and she thought I would know. As we talked, she became angry and spoke to me very sternly. She apologized for speaking to me that way. Then she started to cry. At this point, we were both finished with our meals. I tried to comfort her. Then I suggested we go home and relax.

When we got in the car, she apologized again. I said, “That’s all right.” She looked sad and said, “I might do it again.”

Once we were home, I turned on the TV to a concert of the music from My Fair Lady. I have discovered that she enjoys the music itself more than the movie. She loved it. When it was over, I played several scenes from the movie in which they sang songs she especially likes. We spent almost two hours doing this, and she was engaged the whole time. She was happy, and so was I. Music came to the rescue once again. It was a happy ending to a very strange day.

Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.

Confusion and Mood Control

When I woke Kate yesterday, she was confused about me. She was very suspicious of me. This was unlike the day before when she didn’t recognize me as her husband from 5:00 until I went to bed last night. At least she seemed comfortable with me. That wasn’t true yesterday morning. It was somewhat awkward for her because she was completely dependent on me to get her to the bathroom and ready for the day.

I decided not to push her or try to explain anything. I just helped her get ready. When she was dressed, I told her I wanted to show her something. She followed me into the hallway off our bedroom where we have several pictures of her family. We stopped at the first one. I said, “This is your grandmother Franklin.” She smiled, and her eyes lit up.” I told her that was her father’s mother and there was something special about her that she would like to know. I said, “She was the first member of your family to go to TCU.” (a bigger smile) Then I told her we have a grandson who is the 60th member of her family to attend TCU, and his sister will join him in the fall. She was coming around.

The next picture is one of her mother that must have been taken in her late teens. It’s a beautiful photo and one of my favorites. I explained that she was her mother. It was no surprise that Kate was drawn to her smile and commented on how beautiful she was. We continued down the hallway and looked at pictures of her grandfather as well as her father. By that time her mood had changed dramatically. I don’t mean to suggest that she now understood that I was her husband, only that she was happy.

From that point we went into the family room where I showed her several other family pictures. As usual, she also admired the plants on the patio. Then I took her into the kitchen for her morning meds, and we left for lunch. I played music that I know she likes all the way to the restaurant.

When we returned home, I asked if she would like to work puzzles on her iPad or look at some of her family photo books. She noticed an album of her father’s family and picked it up. I asked if she would like me to help her with it. She said no. I went to the kitchen work on my computer. An hour later, she wanted to rest and spent the next two hours lying on the sofa. I brought my laptop into the room so that I could sit with her. I don’t think she ever went to sleep. After a while, I asked if we might look at family pictures together. She said she would but “later.” She said she just wanted to relax. I let her do that another half hour before going to dinner.

After dinner, she picked up a coloring book I bought for her about two weeks ago. She hadn’t shown any interest in it before. This time she opened it and spent at least forty-five minutes going through it. It is a big book – 200 pages. I was surprised she could spend that much time looking at it. She didn’t even take the crayons out of the box. When I suggested that we go back to the bedroom, she said she just wanted to finish the last few pages. I told her that would be fine. I was very curious as to what she was doing. There is nothing to read, only cartoon-like figures and shapes to color. When I looked over her shoulder, I saw that she was meticulously going through each page, touching each drawing or part of a figure on each page. She was pushing them the way she touches the screen of the iPad. Of course, nothing would happen, and she moved to the next one. I am still puzzled that she went through the entire book that way. She never appeared to be frustrated. Looking at her from across the room, it appeared that she was enjoying herself. It’s just one other thing that puzzles me.

She wanted to do something else once we went to the bedroom. She didn’t want to work on her iPad or look at photo books. She said she would like to read something. I gave her the three-ring binder that I call her “Memory Book.” It contains a variety of information about her and her family as well as our courtship and marriage. When I gave it to her, she didn’t know what to do with it. I explained that it was information about her life and that she could just read through it. She still didn’t understand. I read the initial information and then turned it over to her. She started touching selected words on the page just the way she had done with the coloring book earlier. When I explained that the book was different than her iPad, that touching the words would not take her to something else, she closed the book. I decided it was best not to push it.

She was already in bed. I told her I would put on some YouTube videos and pulled up a mix of videos of The Three Tenors, Pavarotti, Andrea Bocelli, and Andre Rieu. She listened to the music for over an hour while lying in bed. She was very happy, just another example of the power of music.

We experienced only one other hiccup before going to sleep. When I got into the bed, I frightened her. She apparently had forgotten I was there. When I spoke, she realized who it was and was relieved.

As you can tell, there is a lot going on in our lives right now. Apart from these moments, we had a good day. We enjoyed good moments together, and, except for frightening her, the day ended on a high note. What is encouraging is that even with her moments of confusion and feeling down, I still find it possible to find a way to bring her back. I hope that is something that will endure for a while longer.

My Attempts to Control Kate’s Mood

Kate’s senses are in overdrive. I often mention this in connection with her appreciation of the beauty of trees and flowers and her enjoyment of music, but it occurs in less positive ways as well. At this late stage, she is sensitive to every situation she experiences. What happens determines how she feels. You might ask if that isn’t true for all of us. It is, but there is a difference. We don’t generally notice these emotional shifts among the people we are around. That’s because adults learn to act as though everything is all right even when it isn’t. Children and people with dementia don’t hide their feelings as well when things don’t go the way they like. Kate is certainly that way. Some people describe this as losing one’s “filter.”

I’m never sure how she will feel when I wake her in the morning. Most of the time she is in a good mood, but groggy. Other times she is confused. Sometimes she seems annoyed that I am there. There is no way I can know exactly what causes these differences. At times I feel like she has been awake and thinking about something that affects her mood though I don’t have any good basis for believing that.

Whatever the cause, I know that she awoke on her own yesterday, and she was happy. It was also earlier usual which enabled us to make a trip to Panera for her muffin. We were there almost an hour and a half before leaving for lunch. We relaxed at home after lunch. She rested on the sofa across from my chair in the family room. I played some music that we both enjoyed. An hour later, I took her to get her hair done.

It was following her hair appointment that her mood changed. She worked on her iPad while I worked on my laptop. I had to help her several times. In a little while, I noticed that she wasn’t working on her iPad. She was just sitting in her chair with her head propped against her hand. She looked very discouraged. I assumed she had run into further trouble working her puzzles and didn’t want to ask for my help again. I walked over to her and asked if I could help her. She shrugged.

I kneeled down beside the chair and quickly discovered she was confused. She didn’t know who I was. I suggested we look at one of her photo books and picked up the “Big Sister” album. She recognized the picture and knew that it was a picture of her and her brother. We turned to the first few pages. She recognized the first picture of her mother but not her father nor herself as a baby. She was not as immediately engaged by the photos as usual and asked, “Who are you?” I gave her my name and told her I was her husband. She didn’t believe me. I flipped over to the pages that include some of our wedding photos. She had trouble recognizing herself, her family, and me.

It was nearing time for us to get ready to leave for Broadway night at Casa Bella. I decided to take another approach. I walked her to the hallway where we have several pictures of her parents and grandparents. She enjoyed seeing the pictures, especially one of her mother that was probably taken when she was in her late teens. The emotion for her mother is always more intense than for other family members.

When we were ready to leave and just about to walk out the door, I said, “You look like you are still not too sure about me?” She indicated she wasn’t. I said, “That’s all right. I think you will feel more comfortable after a while.” She said, “I hope so.” Before pulling out of the garage, I started an album of Broadway show tunes that is a favorite of hers. We didn’t talk for a while. We just listened to the music. As “Some Enchanted Evening” played, she put her hand on my leg. That was a positive sign. Then “Shall We Dance?” started to play, I said, “Here is one of your favorites.” After each “Shall we dance” line she clapped her hands against her thighs. That was another sign of a change in her mood. I never asked if she knew me, but she was fine when we arrived at Casa Bella. Music had worked for us once again. Now the question was “How will the evening go?”

It was an evening of mixed experiences. As we walked along the side walk to the restaurant we met the couple we always sit with. They are always so kind to Kate. We greeted them and walked into the restaurant. We were off to a good start. Another couple was already seated at our table for eight. One of them was seated across from Kate, so I took the seat next to her. Very soon the conversation became difficult for Kate to follow. She asked people to explain or repeat several times but quickly withdrew. We had almost a full hour before the music began. Kate was uncomfortable. Several times she asked me, “Does this place have food?” I told her we had ordered, and it would be out soon. It wasn’t long before she whispered, “I want to get out of here.” I explained that the music would soon begin and that I thought she would enjoy it. I was right about that. The program featured the music of  Rodgers and Hammerstein, and the singers were outstanding. From a musical standpoint, the evening was a clear success. On the other hand, I am going to do some serious thinking about the future of these music nights. I don’t intend to make any immediate changes, but I may have to look into finding a table for two.

The evening ended well. Kate never showed any sign of being uncomfortable with me when we left. I think she was very glad that it was just the two of us.

Creating Happy Moments

As I have mentioned before, I have two primary goals in caring for Kate: To keep her safe and to keep her happy. For the most part neither of those goals has been especially challenging. I am, however, finding it more difficult to keep her happy. I think that is only natural with the progression of Alzheimer’s. In the early stages, Kate could easily entertain herself. Apart from the routine activities in which we were involved together or those with her friends, she had three different things she did on her own. The one that occupied the largest portion of her time was her yard. Weather permitting, she sometimes spent as long as five or six hours in a day tending to her plants and shrubs. As the shrubbery began to die from her excessive pruning (“pulling leaves”), she gave up working in the yard two or three ago.

She also edited photos on her computer for what she intended to be a photo book of our family. Although she wanted to include a good bit of text to provide a fuller account of our lives, she never wrote anything. Instead, she would often say to me when we were talking about our lives together, “Remember that. That goes in the book.” Though less frequent now, she still says that occasionally. Originally, she spent as much or more time on the computer as she did in the yard, but it became increasingly difficult for her to operate. That dropped out of her life about four or five years ago.

That left her with her iPad on which she works jigsaw puzzles. In recent years, she has spent up to seven or eight hours a day on that. Now she is encountering much more difficulty. I fear that ability will soon be gone. That requires me to spend more time entertaining her. Yesterday was a good example.

When she woke up, she was not as warm and friendly as she sometimes is. She joked with me, but it grew out of a feeling I had rushed heer and took on a more serious, than humorous, tone. I often joke with her, but I back off in situations like that. My joking tends to exacerbate the problem. Knowing that we would soon leave for lunch, I didn’t say much. I simply responded to her needs in getting dressed. I knew I could depend on the car ride of about twenty minutes and could play music all the way to lunch.  We didn’t talk much at all in the car. When we did, it involved references to the music. Once we were at the restaurant, she was fine.

When we returned home, she wanted to work on her iPad. I joined her in the family room and put on some music she would enjoy. After an hour or so, she asked for my help. As soon as I started to help, it was clear that she was more confused than usual. It wasn’t that she had pressed the wrong button. Somehow she thought she was supposed to spell someone’s name and couldn’t do it because there were only scattered puzzle pieces on the screen. She didn’t see any letters. I tried to explain, but she didn’t understand. She kept talking as though there was another person in the house (a woman). She thought her name was Carol. When I couldn’t help, I suggested that she take a break from her puzzles and look at one of her photo albums. It wasn’t long before she was engaged with the photos in the Big Sister album.

We did that for a little while, but I was on my knees beside her chair and got tired. I suggested we move to the sofa where I could sit next to her. She enjoys looking at her albums by herself, but she seems to appreciate them more when I do it with her. That is because I am able to identify all the people and situations. I fill in lots of information she couldn’t remember on her own. It was a happy moment for both of us, and we went through the entire 140 pages.

We had a similar experience after dinner. On several occasions lately, I have played the soundtrack from the movie Annie. It’s an album that we both enjoy. That prompted me to look for the movie on YouTube. I found it, and we watched a portion of it a couple of nights ago. Last night, I turned it on again. Kate was interested but started working puzzles on her iPad. It wasn’t long before she needed my help. She was having a similar problem to the one she had earlier in the afternoon. She didn’t now what to do with the scattered puzzle pieces. When I pulled up a new puzzle, she was worried that she might “mess things up.” I felt sad for her since she obviously recognized that she does mess things up. I assured her she wouldn’t create a problem but decided once again to take a break from the iPad and look at another photo album.

The one I chose was a book focusing on her father’s family. It is a book that we have looked at many times and contains information starting with her grandparents. Because she was already confused, I decided not to read everything. I simply gave her an abbreviated version of the text. I told her about her grandparents moving to Texas with their families, getting married, having children and ultimately moving to Fort Worth where Kate was born. She hadn’t remembered a thing about this album. She thanked me profusely for telling her and said she had never known these things before. As we went through the album, she told me she wanted me to remember that “for the book.” She looked at me very seriously and said, “I want you to help me with this. I want it to be very good. Don’t let me mess it up.” I told her I would, but, of course, I know that she will never be able to create the book she has wanted to make for so long. My heart went out to her when she expressed her fear that she might mess up the book if she did it on her own. Even at this late stage in her Alzheimer’s, she knows she has a problem.

The video had been playing all the time we were looking at the pictures. Although she was excited about looking at more photos, she was beginning to tire. Then one of the songs in Annie caught her attention. We both started watching, and I began to give her a commentary on what we were seeing. That seemed to help her understand what was going on, and she enjoyed the rest of the movie.

Thus, we ended the day on a happy note. It was a day that was punctuated by ups and downs in Kate’s mood, but each time I was able to lift her up with the aid of music, photos, and a video. It reminds me again of how fortunate Kate and I are. I think about the people living with Alzheimer’s who aren’t entertained all day, who have caregivers that have other responsibilities that prevent the kind of continuous care that Kate receives. I also think about the people with dementia who don’t respond to such entertainment in the same way that Kate does. It has to be so hard for their caregivers.

Morning Incident

I continue to celebrate the fact that Kate and I have gotten along so well, but that is not to say everything is all right. As she sinks further into the depths of Alzheimer’s, she has become much more insecure and dependent on me. I have mentioned several times when she has experienced attacks of anxiety or panic. Something similar, though less intense, occurred yesterday morning.

Watching the video cam, I noticed her turning over in bed. I thought she might want to get up for the bathroom. For a short time thereafter, she didn’t move or make a sound. Then she said something that sounded like “Hey.” I headed to the bedroom. From the door, I saw that she was awake and looked relaxed. She didn’t say anything. I walked over and sat down on the bed. She looked uneasy. I said, “You didn’t know where I was.” She nodded, and tears welled up in her eyes as though she was about to cry. I said, “You probably didn’t know what to do.” She nodded again, and I said, “You don’t have to worry. I am always here. I would never leave you alone.” I talked with her a few minutes. She felt secure again. Then I asked if she would like to get up or rest a little longer. She wanted to rest. I asked if she would like me to bring my computer into the bedroom and stay with her. She did. In a few minutes, she was sound asleep.

This was a little problem. It was not intense, and it lasted only a short time. Had I not gone in when I did, she might have become more worried, at least for a longer time. It’s a good reminder of how important it is to be with her and to be observant. It is also a sign of her insecurity. I don’t find that surprising. If I didn’t have any memory, I would be frightened as well.


I remained in the room with her until it was time for me to get her up for lunch. She took a shower and then got back in bed. It took me three tries over thirty minutes to get her up again. I was careful not to push her. When she finally got up, she wasn’t smiling. I asked if she were upset with me. She indicated that she was. When I asked why, she said, “I don’t know.”

I helped her get dressed, and she seemed fine when we left for lunch. She was definitely not as cheerful as she was yesterday, but we had a nice time.

The rest of the day went well. We relaxed at home until time for dinner. She did not nap at all. That is very unusual. She worked on her iPad. After dinner, we watched our granddaughter’s high school graduation online from Texas. She received her diploma early. Then I took my shower and prepared for bed. To my amazement, Kate continued to watch for another hour even though she didn’t know anyone. I went in to bring her to bed. She said she wanted to sleep on the sofa where she was sitting watching the graduation. I encouraged her to come to bed, and she finally consented.

I don’t know what was going on in her brain, but she wasn’t as happy as she was the day before. Once in bed, she was very relaxed and seemed fine. I can’t help wondering what she will be like this morning.

Kate was in an especially good mood yesterday.

Most of the time Kate is good-natured. That is one of the reasons life has gone so well for us. There are times when she is low. Those are usually times when she is more mindful of lack of memory and inability to function the way she should. There are other times when she is unusually upbeat. Most of the time, she is somewhere in between the two extremes.

Yesterday she was in an especially good mood, and it lasted the entire day. I’m having difficulty thinking of a word that captures it. There are two things that were different. The first is that she smiled a lot. The second is that she was very agreeable and easily “rolled with the punches” when things didn’t go her way. Yesterday was the first time she has had a sitter in three weeks. I wondered if she would feel uncomfortable when the sitter arrived and I left. That was no problem at all. She seemed happy to see the sitter and not bothered in the least when I left. The same was true when I got home. She was glad to see me, there was no sign of relief as sometimes happens. She just seemed happy and nothing could change that. Above all, I didn’t see any sign of concern over Alzheimer’s symptoms.

This is not to say that her memory was any better. In fact, she seemed so happy that I found myself thinking of her the way she was before Alzheimer’s. That was quickly erased when she would ask me something like “Where is the bathroom?” in our house. I did, however, get the impression that she remembered I was her husband all day or close to it. As we neared time for bed, she said, “I want to thank you for your patience with me.” I think that was prompted by my helping a number of times with her puzzles. Shortly after that she said something that clearly acknowledged that we were married. Just as quickly that was followed by her asking my name and hers. I was just grateful to see her so at ease and happy all day.

The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.