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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.

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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.

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A Different Response to My Name

Yesterday morning Kate was up unusually early. She showered and dressed with plenty of time to get to Panera by 9:15. As we got out of the car, she called me by name. Then she said, “I shouldn’t have done that.” I asked her why, and she said, “You are my elder.” I told her that would be all right and that we were good friends. She said, “I still shouldn’t have said it.” I told her it was all right for me. She paused a second and then said, “I still think I shouldn’t say it, but if it’s all right with you.”

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Late Night and Early Morning Activity

Kate continues to exhibit a variety of unusual behaviors. One involves her sleep. Yesterday, for the third or fourth time in a row, she was awake rather early. That has altered my routine of taking a morning walk and listening to audiobooks. In fact, it started Wednesday night when she awoke at 11:40 and wanted to go to the bathroom. That is a rare event at this time of the night. After using the toilet, she wanted to brush her teeth. Then she decided to wash her face. Those two frequently go together. In the process, she used one hand towel and four washcloths that I took to the laundry room for washing yesterday. It was 12:30 before I got her back to bed.

She was awake again at 5:10 and wanted to know what she should do. I told her it was early and she should go try to sleep a little longer. She asked about “the others.” I told her there was no one else here but the two of us. She asked where we were. I told her we were in our house in Knoxville. We circled through this same conversation three or four times. Then I gave her a 5 mg melatonin. Not long after that, she was asleep.

I got up at 5:50. Just as I was finishing breakfast, she started to get up. I went to her. She was ready to get up for the day. After using to the toilet and brushing her teeth, she started giving herself a sponge bath. I suggested she take a shower. She really didn’t know what to do and made no attempt to resist.

I have been getting her to use the shower wand recently, but getting started is always confusing for her. I ended up getting in the shower with her, fully clothed. (When we redid the bathroom two years ago, we enlarged the shower to easily accommodate a wheel chair. That gives me enough room to help her without getting too wet.) After I thought she had things under control, I started to step out. She wanted me to stay in order to make sure she was doing things the right way. Then she agreed to let me stand outside the shower in case she needed my help.

After the shower, we went through our drying ritual. We worked together to get much of the water off before she steped out of the shower. Then we adjourned to bedroom where I placed another towel over the chair on my side of the bed. She sits on it while I dry her feet and the lower part of her legs. I finish with the hair dryer. She likes this process, and I often joke by saying something like, “We’re glad to have you at Richard’s Spa today.” She is usually very relaxed after I finish and wants to lie down a little while. This was one of those times.

I let her rest for at least an hour and a half. Then I got her up to go with me to a doctor’s appointment. She was sleeping soundly, but I was able to get her up without too much difficulty. She was in a good mood though not excited about going with me to see my doctor.

Knowing that we would eat lunch later than usual, I was concerned that she would get hungry. I put a breakfast bar in the pocket of my sweater before leaving the house, but she never said a word about being hungry. It was 1:45 before we arrived at the restaurant. The place was almost empty when we arrived. As a result, we had more time for socializing with the manager on duty as well as a couple of our regular servers. Kate and I both enjoyed the meal and our conversation.

Kate wanted to rest as soon as we got home and did so for about an hour. Then we spent another forty-five minutes with Charlotte’s Web. She was still a little tired. Several times I asked if she would like me to stop reading, but she wanted me to go on. Finally, I stopped when it was time to get ready for opera night at Casa Bella. Everything was going well.

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Change and Adaptation

Like most people, I tend to look for explanations for why “things happen.” I think that is part of our natural curiosity. In addition, I have spent a career looking for reasons that people do what they do, why they change, and what they might do in the future. Since Kate’s diagnosis, I have tried to understand everything that is happening as well how to prevent and solve problems. The most important thing I have learned is how difficult it is to know what is coming next and why.

I’m thinking about this while at Panera. It’s 8:37, and we’ve been here about thirty minutes. This is about the third time we have been here in the last few days. In some ways, this doesn’t seem unusual to those who have read my earlier blog posts or those with whom I have talked about our almost daily visits here. Those regular visits declined over a year ago. I related that to changes in her sleeping. In turn, I attributed her sleeping later to the progression of her Alzheimer’s. For months our visits have been infrequent. What has made her get up earlier recently? Is this something that will continue for a while, or are these a few isolated events?

The answer to these questions is “I don’t know,” and that is the answer I have given for most of the changes that have occurred during the past nine years. What I do know is that Kate’s changes mean that I have to change as well. My natural tendency, however, is to continue doing what I have done before. I admit to being a creature of habit. The only thing that saves me is my desire to provide Kate with the best care possible. If that means I need to make a change, I do it. I don’t mean that making a change is necessarily easy. Each one comes with a measure of psychological discomfort. I like routine and predictability.

Early on, I thought that a writer like Neil Simon could have a field day writing about a couple like us, one with Alzheimer’s, the other with OCD. It really could be comical. On the other hand, I am pretty sure that even if a caregiver were not driven by a desire for order and routine, he or she would ultimately find it challenging to deal with the unpredictable changes that take place with this disease. I feel for those who can’t. I have read many posts on Facebook and Twitter and online forums in which caregivers rant and rave over the behavior of their loved ones. I know it can be very hard. My own situation is much easier because the relationship that Kate and I have now is a pretty good extension of what it was before. The major change would be her dependence on me, but she is generally cooperative and loving.

This morning was a good example. I keep a close eye on the video cam so that I can get to her quickly if she calls me or is getting up. I don’t, however, keep my eyes on it every moment. Today, I went outside to check the water level on our pool that has a leak. When I got back inside, Kate walked into the family room. She was looking for me.

It turned out that she had waked up and was ready to get dressed for the day. Of course, she didn’t know where to go or what to do. She was glad to see me, but she hadn’t panicked and was in a good humor. I apologized for not being there as she got up. It hadn’t bothered her. She just wanted her clothes. I told her I could help her. Then I took her to the bathroom to get the process started. When she started to brush her teeth, she asked, “I sure am glad you are here. <pause> Who are you?” When I gave her my name, she wanted to know “Who are you to me?” I told her I was her husband. She was surprised. I said, “Would you rather think of me as a friend?” She said no. During the next twenty minutes, we repeated this exchange several times. She was always surprised, but comfortable, with my answer. When I helped her dress, she said, “You know, you’re a pretty nice guy. I think I could like you.” I think that captures well what her attitude is like.

Now what does this have to do with change and adaptation? I’m about to tell you. This is the third day in a row that Kate has gotten up early. Each time it has been before or during my morning walk. I like that walk. It is not simply a time for a little exercise. I also listen to books. For me it’s a nice way to start the day before my responsibilities with Kate begin. After my walk, I work on my blog. When Kate is up early, it leaves me to find another time to write.

My point is that I like routine, and changes like her getting up much earlier change that routine. I’d rather not change. On the other hand, she was so nice this morning that I want to take advantage of the time we have to enjoy ourselves. That is a higher priority for me, especially at this stage. I may be having a harder time getting other things done, but it is a pleasure to have time like this.

An hour has passed since I started this post. We are still at Panera, and Kate is still working her puzzles. That’s an unusually long period of time without her getting frustrated. I have been helping her throughout, but she is doing better than she has done in a while.

BREAK

Whoops, it is now 10:45. As I was in the middle of the previous sentence, Kate hit a roadblock with her puzzles. We came home where I will now close and upload this post.

Despite her having trouble and wanting to stop, she was still in a good humor and wanted to help me gather our things together to go home. Once here, she hit her recliner where she is resting. That’s a good thing because I have a noon lunch meeting at United Way. That’s an hour earlier than the sitter comes. I arranged for a church friend from to take Kate to lunch and get her back home for the sitter at 1:00. I have done that once before, and it worked well. This is a person who used to be on the staff at church when Kate was the church librarian. They ate lunch together frequently and have always had a good relationship though we don’t see her often these days.

While Kate has rested, I took care of a number of household chores. Those never end, and I am always behind. It’s been a nice morning. I am glad she got up early even if it meant no walk that I didn’t finish this post until now. Until next time, have a nice day.

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A Strange Experience Last Night

As I reported in a previous post, Kate and I had a great time yesterday morning. Reading and taking a tour around the house was fun for both of us. When the sitter arrived, Kate acted glad to see her. Although she did want me to go with them to lunch, she didn’t show any uneasiness at my leaving for Rotary.

When I arrived home, I expected to see her resting on the sofa. Instead she was seated on the sofa across from the sitter who told me that Kate had been very talkative while I was gone. I don’t know how long they talked, but I got the impression it was a long time. I didn’t ask what they talked about. Last night I got a taste of this myself.

I got Kate ready for bed before I took my shower. Just after I got out, Kate opened the door to the bathroom. I was surprised that she was up and asked if she needed to use the bathroom. She said she was looking for the girls. I had no idea what she was talking about. I do know that once in a while she believes we either have company in the house or that someone is coming to visit us. I told her we were the only people in the house.

Then she began a conversation that last more than forty-five minutes, fifteen in the bathroom and another thirty in the bedroom where she asked me to sit in a chair while she took a seat on the bed a couple of feet away. She stumbled over her words so much that I couldn’t everything she said. I was able to make some sense of what she was communicating but not what motivated her to do so.

She thought she was in Texas and a member of a group that apparently had been all women but now included men. She talked about being on a committee that was charged with identifying women who might become new members of this “group” (club?). I gathered that the group might be a “leadership” organization of some type because she talked a lot about the quality of the women who had recently joined and the prospects who were being considered.

As she talked, she asked me if I knew “Richard.” I told her I did. She said, “He’s a nice guy. You would like him.” She went on further to talk about him. She said, “You might say ‘He’s my . . . She paused as she looked for the right words. I was eager to see if she would say “husband.” She said, “guy.” Then she added, “He might even be the one I marry.” She continued talking about her club and mentioned “Richard” several other times but couldn’t recall the name and didn’t for the remainder of the conversation.

She only stopped her conversation because I mentioned that I was going to get ready for bed. I got her in bed and told her I would be in bed beside her. As I said this, I wondered how she would react to that since she obviously didn’t recognize me as Richard. Would she think it strange that we would now go to bed together? Not at all. We got into bed as we always do except that we didn’t snuggle. I was afraid that would seem too abrupt for her. We slept well without any further conversation except that we had had another good day. Now I wonder what she talked about with Sandy. Was it the same kind of conversation? If so, that must have seemed especially strange to her. It seemed that way to me.

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Morning Crisis

Yesterday, like a number of days recently, Kate was up at 7:30. That meant I didn’t get my normal walk, nor did I have time to upload a new post. This morning I was up at 5:20. I thought this would be a good opportunity to write a post about an experience we had last night. My plans changed quickly. I was about to walk out of the bedroom when I noticed that Kate was awake. I walked over to the bed to let her know I was going to the kitchen to fix my breakfast. When I reached the bed beside her, I recognized the look on her face. I said, “Are you afraid?” She nodded. I told her I could help her and that she was going to be all right? Then I said, “Would you like me to stay with you?” She said, “Oh, yes.”

She wanted to go to the bathroom. As I helped her up, she said, “You’re very nice to me. You’re the only one I can talk to.” I wasn’t sure if she knew who I was and said, “My name is Richard.” She said, “I know that. <pause> What’s your name?”

After using the toilet, she wanted to brush her teeth. I asked if she were still afraid. She said she was. I asked what she was afraid of. She said, “I don’t know. I don’t know what to do?” She talked a couple of minutes about that and said things like “I don’t know what’s going to happen to all of us.” “I just want to get out of here. I don’t really mean that, but . . .” (She didn’t finish.) “Thank you for helping me. You’re the only one I can talk to.”

I assured her that I could help her, that she could depend on me. I said, “Right now, I think you need to get back in bed and rest. We’re going to have a very nice day.” I started to leave for the kitchen for my computer, and she said, “Please stay with me.” I told her I was just getting my things from the kitchen and would be right back.

As you might expect, I turned on some soft soothing music and sat in the chair beside the bed. It wasn’t long before she was asleep.” I began to think about leaving to fix my breakfast, when she awoke and saw me. She had a smile on her face and said, “You’re here. How nice.” She seemed like herself, but now I feel I should stay a while longer. At least for now, the crisis is over.

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A Terrific Morning

Yesterday morning before Kate was up, I posted a tweet that said, “Feeling grateful today. At Stage 7 #Alzheimers, Kate often fails to remember my name or hers, doesn’t know her way around the house, needs help with everything, and is losing her ability to speak, HOWEVER, we still enjoy life and each other.”

I thought a while before posting it for two reasons. First, I don’t want people to think we have escaped all the negative aspects of Alzheimer’s. We haven’t. Second, I don’t want other caregivers whose situations are much different than ours to think they must be doing something wrong or they would also be enjoying life the way we have. From the start, I have wanted to provide an accurate description of our lives. It seems like being able to enjoy life while living with such a devastating disease needs to be told.

After posting the tweet, I realized that my grateful feeling could be easily followed by something that would bring me down from my perch. That could have happened. It is not unusual for us to experience such swings from high to low and back again. I am happy to say that our morning turned out to be a confirmation of our good times.

Kate was up at 7:30, in a cheerful mood, and ready for the day. We were at Panera before 8:30 and back home before 9:30. I wasn’t surprised that she wanted to rest. While she did that, I did a few household chores.

At 10:00, she had rested enough. I asked if she would like me to read a little of Charlotte’s Web. We spent the next hour reading. We both had fun, but I found my voice was getting a bit hoarse. For the better part of the day yesterday and the day before she didn’t recognize our house as ours. I’m not sure whose she thought it was. I suggested that I show her around the house. She was ready.

We spent the next hour walking first through the kitchen, then the dining room, through the living room, and back to the family room. Along the way we made numerous stops as I told her the stories behind many of the pictures, furniture, and other items some of which had come from her parents’ house. She was enthralled. As I expected, she was particularly excited about the variety of things that had been her parents. You might think that because we had so many things of her parents and that I talked about our having them in our home she would have come to realize that she was in our home; however, I never got a sense that she recognized it as ours. In fact, three or four times she asked, “Who owns this house?” Each time I told her that we did, but it never seemed to stick.

Once again, we had had an experience that can be looked on with sadness – sadness that she doesn’t recognize her own home or the many things that should be treasured memories for her. I am just glad that with my help she can experience them in the moment. Yesterday morning was a very Happy Moment for her and for me. I am grateful.

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Little Things from the Past Two Days

Each day brings with it a variety of little things that characterize our lives. For example, Kate is losing more of her vocabulary. That leads to her saying things I may understand but are not precisely what she meant to say. Yesterday morning as we walked through the family room, she once again took note of her ceramic cat. I had walked ahead of her a few steps and heard her say, “Kitty Pat. Kitty Pat.” I looked back and said, “What?” She pointed to the cat and repeated enthusiastically, “Kitty Pat.” This is just one example of changes in her speech. She continues to forget common words like salmon, steak, and sweet potato fries. There are many more. By the way, when she stops to look at the cat, she seems to understand that it is not real. Other times I’m not sure. As she looked at it yesterday, she said, “He’s looking at me. Now he’s looking at you.”

At the same time she loses certain skills, she continue to amaze me with her self awareness and, especially, her insights about me. She was a little uneasy when we went to lunch yesterday and asked me to sit beside her in the booth rather than across from her. In a few minutes, I said, “It looks like you are relaxed now.” She said, “Not quite, but I’m getting there.” Then she surprised me. She put her hand on mine and very gently said, “If I were really upset, you would say, ‘You’re going to be all right. Just relax. You’re going to be all right.’” These might not have been my exact words, but they were pretty close. Her tone of voice was “right on.”

Later in the day, she asked where we were. Before I could answer, she said, “I must make you miserable asking you the same question over and over.” She forgets many things, but she clearly remembers things of which I thought she was unaware. It’s not only that she remembers, but she also grasps that it could be irritating. Of course, I told her it doesn’t, and it’s true though I’m not sure she believed me.

She is often concerned about what she should do or say in social situations. This usually comes up before we are going somewhere, but other times it is out of the blue. That happened yesterday as we got in the car after lunch. She said, “It’s really good to see you.” She wanted to know if that was correct. I told her it was. Then I said, “As a former English teacher, you could appreciate that there are different ways you could say the same thing. Some could have slightly different meanings.” I went on to say, “For example, you might simply say, ‘It’s nice to see you.’” I explained that it wouldn’t convey the same degree of pleasure or emotion. Then she asked what she had said. I said, “It’s really good to see you.” She immediately said, “Or I could say, ‘It’s so good to see you.’” Because there is so much that she doesn’t remember or understand, it is easy to think that she wouldn’t be able to grasp something like this. That would clearly be wrong – at least this time.

There is something else that has occurred regularly for a long time. I don’t think I’ve ever mentioned it. She has ridden with me a lot over the eight years since I bought it. We’ve had only one car since December 2013. For the past three or four years she has been unable to identify it at all. The fact that I point and say, “That white car is ours.” doesn’t help. In addition, she doesn’t know which side of the car she is to enter (even when I take her, and I always do.) or whether to get in the front seat where I have opened the car door or the back seat with the door closed. It’s a good reminder of just how much her rational thought processes have diminished. I should add that she has never had any interest in cars. That was long before Alzheimer’s. I know that she knew she drove a Volvo station wagon for a few years, but I’m not sure she ever knew what kind of car I drove.

There is one other thing I should add. I’ve mentioned a lot about her poor eyesight. She frequently will not see specific food items on her plate at meal times. She has salmon and sweet potato fries every Saturday for lunch, but she often doesn’t see the salmon. When the server put her plate in front of her, I am careful to turn it so that the salmon is right in front of her and the sweet potato fries above that. I feel certain her love of fries is part of the reason she sees them. When I point out the salmon, she has great difficulty seeing it even when I use a knife as a pointer and touch it. The surprising thing is that she frequently sees small specks on the table or floor or in the car. They must stick out because there is usually nothing around them, but it is a reminder that her eyes are working. It is the brain that has trouble differentiating different items that are close together.

Let me close with something I’ve said before. We still enjoy ourselves. Yesterday and Friday were especially good days. These days may be waning, but, obviously, it is possible for a couple “Living with Alzheimer’s” to derive pleasure even at this late stage of the disease. I know that everyone’s experience can’t be like ours nor would I deny the low points that are a part of everyone’s journey. From the memoirs of other caregivers, however, I know that our experience is not unique. That should be encouraging to people who have recently received their diagnosis. It’s good to know that life after Alzheimer’s is possible, at least for a while. For us that has lasted almost nine years.

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Ups and Downs This Week, Mostly Ups

It’s been a busy week. My daily schedule has been interrupted more frequently than in the past. That means I’ve been less regular with my posts. Several times I have started one and not been able to finish because of something else I needed to do. Kate has required more attention than usual, but that doesn’t explain everything. The other things have involved household chores.

Tuesday was one of those days about which I didn’t say anything. I was especially interested in writing about the events of the day as a follow up to Monday when she had a rough beginning. Fortunately, I jotted down a few notes so that I can cover the highlights.

The day started like the day before. Her brain seemed to be “blank.” She was very dependent on me; however, she didn’t appear to be disturbed the way she was on Monday.

I don’t know that my own behavior played a role in the way she responded. I do know that I tried to be more careful in waking her than I had done the previous day. I played a full 20 minutes of relaxing music before going to the bedroom to wake her. When I entered the bedroom, she was awake. I said hello and sat down on the bed beside her. This wasn’t planned or intentional, but I think it may have played a role in conveying a relaxed morning, not a moment when I was eager to get her up.

She didn’t know her name or mine nor our relationship. When I said I was her husband, she couldn’t accept it. As I have done on other occasions, I suggested she think of me as a friend. She liked that. I mentioned a shower, but she didn’t want it. I didn’t push.

I told her I loved her. Though a bit unclear, she responded with what she meant to be “A Bushel and a Peck.” I pulled it up on the audio system, and we sang it together several times. Then I suggested she get up so I could take her to lunch. She got up easily. I had started to wake her with plenty of time for her to take a shower. When she didn’t shower, we were left us with additional time to get ready.

As a result, we got to lunch earlier than usual. She was very talkative and initiated a conversation as though we had never met before. She asked me what I did for a living. I explained that I had started out as a college professor. She wanted to know what I taught. When I told her sociology and social psychology, she asked me to explain. I did, and she said that sounded interesting. I went on to say I ended up with my own market research company. She didn’t know what market research is. I explained that, and she also thought that was interesting.

When I finished, I said, “Why don’t you tell me about yourself.” I knew this might put her on the spot but thought my question wasn’t especially threatening. She handled it well and said, “There really isn’t much to tell.” I told her I knew a lot about her. Then I recounted her academic background and teaching career. I pointed out that she had been a good student and had earned two masters degrees. Then I told her about her volunteer career as our church librarian. She was quite interested and added her own comments.

It had been almost a year and a half since she had had a cortisone shot for the arthritis in her knee. Over the past couple of months, she has complained about it periodically, so we went directly from the restaurant to the orthopedic clinic. She was very childlike throughout the visit but handled herself well. We waited in the lobby for about fifteen minutes. Assuming we might have to wait a while, I took along her “Big Sister Album.” I thought that would occupy her for a longer period of time than her iPad. She enjoyed looking at it and made a lot of comments. There were only a couple of others in the room. I am sure they wondered a bit as they heard me identify all the people including Kate herself as she responded much like a child listening to a parent read a book.

We didn’t wait any longer after going back to one of the examining rooms. We met with two different people. Kate didn’t understand a lot of what was said and asked for clarification. I helped interpret what they said. She never understood, but she was satisfied. As we left, she thanked everyone including those in the waiting room.

The most important thing I should say about the day was that it was one of the nicest days we have had in a long time. I think that relates directly to her mood. She was very happy and quite at ease. Her memory wasn’t any better nor was she any less confused about things like whether we were in Texas or Tennessee, but she enjoyed herself. I couldn’t understand everything she said in our conversations, but she was surprisingly sharp in terms of her understanding about the importance of values and the role of parents in teaching them to their children. She has lost so much of her rational ability that I really enjoy hearing her express her opinions, beliefs, feelings, and values that remain intact. It keeps me in touch with the Kate I have always known.

Recently, especially this week, our lives have vacillated between highs and lows. The highs have been very special, and we experienced them every day. They far outweigh the lows. I know greater challenges are on the way. I am counting on the Happy Moments to sustain us.