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.

Follow-up

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.

Morning, Noon, and Night

As a rule, Kate is happy, but there is clearly some variation that occurs from morning to night. Predicting how she feels in the morning is difficult. She has never been a morning person though she got up early for years without complaining when she was working professionally and playing her role as a mother. Over the course of her Alzheimer’s she has found it harder to get up. Not only that, but she is much less clear-headed now. That varies from one day to the next. Sometimes she seems quite alert. Other times she is quite groggy.

The good news is that she almost always becomes more alert and cheerful as the day progresses. There are exceptions. I reported on one of those two days ago when she didn’t talk much. She didn’t seem unhappy. She was just less energetic. Day before yesterday she was unusually upbeat. Yesterday she was somewhere in between, but happy, and more upbeat from lunch until bedtime.

I have tried to understand why her mood in the afternoon and the evening are the most predictable. I think the answer may lie in the weakness of her rational abilities and strength of her intuitive ones.

Her rational thought processes are weakest upon waking. That actually makes sense to me. I think that is true for many who don’t have dementia. We generally recover quickly as we look around us, especially if we have contact with a spouse or other family member. It doesn’t work as easily for people with dementia. During the day, Kate often doesn’t recognize that she is in our house or who I am, but she is groggiest in the morning. It’s hard for her to put things together.

She is usually able to reach a comfort level in a relatively short period of time. A few times it has taken as much as an hour or two. Here is what I think is going on. The longer she is up, the more contact she has with the things in her environment. That gives her a greater sense of familiarity with me and with our home. It’s not that she necessarily remembers her name and mine or our relationship, but she feels comfortable.

That contrasts with the way she feels upon waking. Then everything seems strange. Fortunately, there have only been one or two times when she didn’t seem comfortable with me. That enables me to help her find things in the environment (for example, looking out the window to our patio and back yard) or telling her things (like her mother and father’s names) that give her a sense of “place.” As we go about our normal routine, she encounters a variety of experiences. Throughout the day, she has more experiences that increase her comfort level.

For several years, I have thought the time after dinner is the best time of the day. A large part of that is because Kate is more at ease, but I think there is more to it than that. By that time of day, she is tired. She really wants to relax. The same is true for me. I have spent the entire day focusing on ways to make her day interesting as well as tending to the many other responsibilities of being her care partner. That includes taking care of the house and all that goes along with it.

When we return home from dinner, she likes to sit in her chair in the family room and work her jigsaw puzzles on her iPad. I like to relax by watching the news. About 8:00, we adjourn to our bedroom where I put on a DVD or YouTube videos of musical performances. We both enjoy the music while she continues with her puzzles, and I often take care of email correspondence, check in on Twitter, or work on my blog. At that time, we are both free of any great demands. Neither of us talks much during that time, but we are both happy doing “nothing” together.

Being alert and happy in in the afternoon and evening does not mean any improvement in Kate’s symptoms associated with her Alzheimer’s. She can be happy and confused at the same time. In fact, it is rare for her to be confused and unhappy. I have reported on each of the times this has occurred. It doesn’t seem like that has happened more than five or six times.

As I have said before, the way I feel is heavily influenced by her mood. I think that has always been the case, but it has become especially pronounced since her diagnosis. I think that relates to the loss of her rational abilities. I have learned to accept the fact that her memory is almost gone. As a result, our relationship is heavily dependent on sharing her intuitive abilities. When she enjoys music, children, social experiences, and nature, especially “all the green” of trees and shrubbery, I enjoy both the experiences she is having and, perhaps more importantly, seeing her enjoy herself. I understand those pleasures can continue close to the end of this journey. If that is so, many happy moments are in our future. If not, I’ll treasure the ones that came before.

Mood and Conversation

In my previous post I commented on Kate’s less-than-cheerful mood and a change in her conversation. She just hasn’t been talkative lately. That changed yesterday. I wish I could remember exactly what she said, but I can’t. All I can tell you is a summary of what happened.

She was up about 7:30 and went to the bathroom. This was a day when she wanted to express her independence. She didn’t want my help. I walked her to the bathroom. Then I went back to the kitchen where I could watch on the video cam to see when she had finished. After a while, I hadn’t seen her and wondered if she had come out without my noticing. Then I heard the shower. I was happy about that since she was due for one. I also knew that she would want to return to bed afterwards. That would give me a little time to take care of a few things I needed to do. It wasn’t too long before she was in bed again.

From past experience, I knew that she could easily sleep another couple of hours, but I kept checking the video cam. (In case you wondered, my iPad with the video sits to the right of my computer.) At 10:45, she had shown no sign of getting up. I went back to wake her. When I approached the bed, I saw that she was awake and asked if she would like me to take her to lunch. She gave me a confused looked as though she wasn’t sure who I was.

When I sat down on the bed, I said, “I’d like to take you to lunch.” She said, “Where are my clothes?” I always put them on the chair about three feet from her side of the bed, but she can’t remember. I pointed and told her where they were. Then she said, “What do I do now?” I told her she should get dressed. As I helped her into a sitting position, I noticed that she looked frightened. She said, “I sure am glad to see you.” On one or two other occasions, she has been awake but didn’t get up because she didn’t know what to do or where she was. I quickly assumed (correctly) that was what happened this time. She was shaking as she talked. She said, “I didn’t know what to do.” Then I felt terrible for not checking on her earlier, something I will watch more carefully in the future. I apologized and told her how bad I felt. When I did that, she immediately tried to ease my guilt. She said, “Well, it’s going to be all right now? <pause> Isn’t it?” I nodded, but she wanted me to be more affirming and again said, “Isn’t it?” I assured her it was. She still appeared to be shaken by the experience.

Unlike her earlier desire to assert her independence, she wanted me to guide her through every step she needed to take to get ready. She was too emotional to think straight about everything she needed to do. On a normal day she has difficulty, but the emotional experience she had had exacerbated the problem. Several times she reiterated how scared she had been.

On the way to, during, and after lunch she was quite talkative. While we were eating, we had a conversation similar to one I reported on a couple of weeks ago. The first one involved Christopher Columbus. She asked who he was. I tried not to get into anything too overwhelming for her to understand. She asked questions about everything. That meant it did get too complicated for her, but she was still eager to know more. I had to repeat just about everything two or three times without her ever getting it, but she was interested anyway. Somehow the conversation drifted to food that was in the New World and introduced into the Old. I Googled a list of such items and read them to her. She was like a little child discovering something she had never thought about. She couldn’t believe they didn’t always have things like potatoes or corn in Europe before then.

The next topic was World War II. She started this one when she brought up the topic of discrimination. I mentioned the Holocaust and Hitler. We didn’t get too far on that one because she got too emotional. She was both interested and shocked. She is more emotional now and starts to cry at both happy and sad things she hears about.

We got home a short time before the sitter arrived. I didn’t tell Kate that Mary was coming. I just let her in. Kate welcomed her. I told her I was going out for while. She said, “We’ll be fine.” Once again, I left with a good feeling. When I returned, they were sitting in the family room talking happily.

After Mary left, we went to dinner. When we returned home, we sat down in the family room. Ordinarily, I would watch the news while she works on her iPad. She had been in such a good mood that I didn’t want to break it by watching the news. I turned on a Barbra Streisand album as Kate started to open her iPad. The first song I selected was “Send in the Clowns.” It has always been a favorite of hers. Instead of working a puzzle, she put the iPad down and just listened. Then I to selected a number of others that I knew or thought she would like. We sat there together for an hour just enjoying the music. She loved it. I did as well, but the real treat was sharing such a happy moment together. I feel fortunate that we can have moments like these, especially this late in her disease.