Posted on

Early Morning Confusion

I woke up at 5:20. Kate was also awake. I asked if she were all right. She said, “I don’t know.” She was having one of her mild anxiety attacks. I say “mild,” because she wasn’t very emotional. She was concerned about where she was. She didn’t recognize anything and wanted to go home. We talked for about ten minutes. When she didn’t respond to my telling she was at home, I told her it was still early in the morning, and I would take her home later. She couldn’t remember that. I repeated it several times.

Then I thought I might divert her attention by taking her to the bathroom. She didn’t recognize me as her husband but was very willing to let me help her. When we got back to bed, it was 6:00. She didn’t want me to leave her. I got in bed with her. I decided to play a little soft music that I know she likes. The music did what I had hoped. She started to relax and held my hand. We didn’t talk at all. At some point, she went to sleep. An hour later, I got up and went back to the kitchen.

At 8:45, I saw that she was getting up and went to her. She still didn’t know where she was, but she was smiling when I entered the bedroom. She was ready to get up. I took her to the bathroom where she used the toilet and brushed her teeth. When she had finished, I told her it was time for her shower. She got in without complaining. I turned on the shower wand and handed it to her. Then I put soap in the other hand and guided her in using it and then rinsing off. It went well.

When she finished, I helped her dry herself and used the hair blower to dry her hair. She was quite relaxed. Then she wanted to get back in bed. That’s where she is now. Unless she wants to get up earlier, I’m going to let her stay there until time for us to get ready for lunch. It’s another morning when I don’t expect to walk. I think that is four or five times in the last seven.

Posted on

Another Unusual Incident

Kate and I went to opera night at Casa Bella this  past Thursday night. I approach each of these evenings with both anticipation and a small measure of concern. These nights (6:00 to 8:30) have played a significant role in our therapy for almost six years. There have only been a couple of nights when Kate didn’t enjoy herself as much as usual. Those have been within the past few months and have related to changes in our seating arrangement and sometimes being part of a larger group. Now I sit beside her. That allows me to help her more easily, especially in whispering to her when she has questions.

If I had thought much about it, I would not have been concerned at all. After all, it is the Christmas season. That meant we had a generous supply of music for the season including a “sing-a-long” with “The Twelve Days of Christmas.” The crowd was caught up in the spirit of the season, and so we were.

We engaged in a little more conversation after the program ended. The result was our getting home a little later than usual. I was eager to help Kate prepare for bed and to take my shower. That shouldn’t have been a problem, but I didn’t anticipate what was about to occur.

I got Kate to the bathroom to brush her teeth, and she got caught up in the process. She always works hard to clean between her teeth even though I haven’t been unable to find anything. (I sympathize with her since I have a space between two of my teeth that seem to have nothing between but bothers me nonetheless. My dental hygienist believes it is where a crown meets the real tooth.) She took more time than usual, at least twenty minutes. She wanted me to watch what she was doing in case she wasn’t doing it the right way. This involved my watching her go from tooth to tooth using her fingernail like dental floss.

When she finished, she washed her face and arms. That wasn’t unusual except that wanted me to watch carefully. She wanted me to know exactly what she was doing. She put great emphasis on the upper portion of her forehead where her hair begins. During this process, she continually pointed her fingers toward me so that I could see what she was getting out. She sometimes refers to “them” as “thingies.” I’ve never been able to see anything but acknowledge that I have seen them.

When she got to the bed, it was time to work on the toes. She runs her fingers up and down between each toe and can repeat this process several times. That night was one of those times. Then she wanted me to do it. I complied. When she got in bed, she began to pull her hair. Several times I started to step away from the bed. Each time, she called me back saying, “I want you to see this.” This incident was not unique except for the duration. I finally got to shower almost an hour and a half after getting home. She seems to be getting more obsessed about pulling her hair, picking her teeth with her fingernail, and cleaning between her toes. I wonder how far this can go.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

Update on Reading

I am glad to report that Kate and I have continued reading together. We have now read The Velveteen Rabbit four times. Each time she has enjoyed it just as much as the first time. We have also read more than 100 pages of Anne Frank’s diary. Yesterday, we started Charlotte’s Web and have read more than 100 pages of it.

It has been exciting to see how much she has enjoyed everything I have read to her. She audibly expresses her reactions which seem to be appropriate to the things I am reading, for example, laughter at something funny, sadness when something bad happens.  I have been very careful not to overdo it. I stop after chapters in Charlotte’s Web and  daily entries in Frank’s diary and ask Kate if she would like to continue. So far, I have been the one to reach a stopping place. One of those times was with the diary. Kate was getting too sad, and I suggested we take a break. She agreed.

It is a special pleasure for me because I actually enjoy what we are reading as well. I’ve always liked Charlotte’s Web and had never read Frank’s diary. It is nice to add a new activity that involves both of us. The down side is that it takes away from my personal time, but I believe it is a net gain in pleasure for me.

Posted on

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.