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More Surprises

The life of a caregiver and the person with dementia is full of surprises. I tend to think all of the surprises are ones that take the caregiver off guard. I know that can’t be the case. With the increasing loss of memory, the life of someone with dementia must be filled with surprises all day long. I can’t speak to those, but I can tell you what surprised me this morning.

I returned from my walk just before 8:00. I noticed quite a few leaves from a neighbor’s loquat tree on our driveway. That looked just like something Kate would have done. She has always liked to pull leaves from her shrubs and those of our neighbors when they hang over into our yard. I was surprised because she has been sleeping so late recently. When I got inside, I met her coming into the family room ready for Panera. She was dressed in a pair of pants from my gym suit. They were a little long for her, so she was walking on them. She was wearing an old top that I had put with a few other old clothes in the back of my closet. When I got back to the closet to change, I noticed that some of my things appeared to have been rifled the way a thief might have done. She had gone through my underwear drawer and a shelf at the back of the closet that had a stack of my tee shirts. They were simply thrown to the floor of the closet. When I went back to the family room, I found that she had moved two chairs from their usual spots and placed them side by side in a different place than where they had been. Later today when we got home from lunch, I decided to take in some of the things she put in the back seat of the car yesterday. They included a heavy fleece robe, a pair of shoes, one of her tops, and a pair of my socks.

Because she was up early, we had plenty of time to get to church, something that doesn’t happen frequently these days. We got to Panera by 8:30 and came home to change clothes for church around 9:30. It is difficult for her to participate in the service because she doesn’t understand a lot of things. It is also hard for her to read. She can’t read the bulletin or the lyrics of the hymns. There are some things that are still in the recesses of her memory. I watched carefully this morning. She remembered the Apostles Creed, the Lord’s Prayer, and some of the lyrics for one of the hymns.

I should also mention that on the way to church she talked about her time as the volunteer church librarian. She served in that capacity for 19 years. She is proud of the contribution she made and was able to point out some of the ways she helped members locate the materials they needed. She has a reason to be proud. She worked a lot for a volunteer. As she said to me this morning, it was something she enjoyed doing. She was a natural for the position. She and her family were very active in their church. She was very familiar with church life. She has a master’s in library science and 13 years experience as a librarian in the public school system. She also has the right personality for a position like that. She has excellent social skills and an eagerness to serve those who enter the library. I remember many times when we were traveling, and she would make long distance calls to various members following up on their requests for information. Frequently, she had picked up those requests on her voice mail after we were out of town. Despite the unusual behavior this morning, I am pleased that she is happy and remembering these things from the past.

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A Nice Ending to Another Good Day

Although we got a late start and Kate slept later than I wanted, we had a nice day that ended in a typically good evening. I do have to report, however, that Kate had a good bit of confusion in the evening. Several times at dinner, she asked,”Exactly where are we?” The first time I said Knoxville. Five or ten minutes later, she asked the same question again. This time I asked if she meant the city. She nodded. Again, I told her Knoxville. She asked at least once again while we were eating and then again as we walked out of the restaurant.
In addition, we saw Dan Carlisle, a retired music professor from UT who was our son’s piano teacher for two years while he was in high school. He is a regular at this restaurant. He is almost always there when we are. I pointed him out to Kate soon after he arrived. A short time later, she asked his name. That happened again once or twice before he had finished his meal. Until last night, she has been able to recall his name. She often mentions he is there before I’ve seen him.

Once we were home, Kate wanted to go in the living room where we sat for about thirty minutes. We hardly ever use this room any more. She was very cheerful and talkative, something I love to see. She talked about what a nice room it is. I mentioned the furniture and other items we had gotten from her parents’ home. She liked that. She took special pleasure in the Royal Doulton China figures that her father had given to her mother. After a while, she asked, “Exactly where are we?” I told her we were in Knoxville where we live. She said, “So this is our house.” It was a statement that sounded more like a question, and I said yes.

As we were chatting, Kevin called. We talked with him a short time and made plans for our upcoming visit to Lubbock next Saturday. We’re arriving at a good time. Brian will return home on Tuesday after finishing his freshman year at TCU. It will be good to hear what he’s been up to.

After Kevin’s call, it was time for bed. I headed to our bedroom. When she didn’t come right away, I walked to her room to see where she was. She was standing in the hallway near the door to the guest room and her room. She wanted to know where she should go and pointed to the guest room. I told her I thought our bedroom would be a good place. I asked if she would like me to get her night clothes. She said yes. I brought them to her. She had no problems like the previous night.

I went in the bathroom to brush my teeth. When I came out, I heard her call my name. She was in the hallway where I had seen her a few minutes earlier. The light was out, so she was completely in the dark. I turned on the light. She said, “Where do you want me?” and pointed to the guest room. Once again, I told her our bedroom would be best. She seemed relieved to see me. It appeared that she had lost me. It was dark, and she didn’t know where to go. This is only the second time I have observed any indication that she wasn’t sure about her way around the house. The other time was a few weeks ago when we returned from an evening at Casa Bella. When we got in the house, she said, “I’ll follow you.”

You may think it strange that I would say we’ve had a nice day after telling you about Kate’s confusion. I do find that all the new and increasing signs of her decline make me sad. On the other hand, my mood is also affected by her mood. She was in a good mood, and I find it especially uplifting to see her enthusiasm about our living room and the things we have of her parents. Life continues to change, but moments like this sustain us.

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We’re back at Barnes & Noble

It’s a little over an hour after my postscript to the previous message. We spent a pleasant 45 minutes in the family room while she worked on her iPad, and I folded the clean clothes. Then she was ready for a change. Before leaving the house, she went to her room for something. When she returned, she had put on a new top over the one she was already wearing and carrying a heavy cotton robe and a pair of shoes. As she walked by the coffee table, she picked up a wash cloth I had just folded. I didn’t say anything. I just waited to see if she were planning to take them with her in the car. When we walked into the kitchen, I noticed that her top was on backwards and mentioned it to her. She took it off. Then it was inside out. She recognized that and started to fix it. Then she stopped and put it under her arm and picked up the robe, shoes, and wash cloth and took them to the car. I never asked why. I have done so on a few occasions, and she hasn’t been able to say. She didn’t bring them into Barnes & Noble. I would have said something if she had done that.

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Changes in Sleep Pattern

I was expecting (hoping?) Kate to be awake a little earlier today. I had a special interest. A man with whom I have had a friendship going back more than twenty years died this week. His service was at 11:00 this morning. At 9:00, Kate had gotten up to go to the bathroom. I thought that was a good sign. That would give her ample time to be ready to leave by 10:30. I told her about the funeral, and she asked if she could sleep a little longer. I told her she could. She got back in bed and was quickly sound asleep. Shortly after 9:30, I had dressed for the funeral. I knew time was getting short for her to get ready and asked if she thought she could get up. She really wanted to sleep, so I changed clothes and let her sleep.

About 11:30, I went back to the bedroom with the intention of waking her. I found that she had gotten up. We were definitely too late for the funeral, but we got to lunch at Bluefish close to our normal schedule. We ordered our usual meals, the salmon for Kate and a salad with a cup of shrimp and andouille sausage stew for me. Our regular server was out. She had cut her hand shortly before we arrived, but we were served by someone else who was as friendly as our regular one. We chatted with her about her educational and career plans. She hopes to start college in the fall.

We came directly back to the house after lunch. Kate brushed her teeth and went to the guest room where she is taking a nap. She is lying down on a love seat. That is a bit unusual for her. She has napped many times in the guest room but it has always in the bed which for me would be much more comfortable. This continues the change in her sleeping that I have been following the past several days. I intend to let her sleep as long as she feels the need. Since her diagnosis, it has not been unusual for her to take an afternoon nap, often right after lunch. Generally, she is up within 30-45 minutes. I am eager to see if she sleeps any longer today. I am hoping not.

I should say that I have not given her Trazadone since Monday night, so I can’t blame her sleeping on that. She hasn’t gotten to bed any later than usual. Everything seems to suggest that she may be entering a new stage. That would fit with some of the other changes that I have observed over the past week or two.

P.S. 3:04

Af few minutes ago, Kate walked in. She must have rested about 45 minutes. That’s not bad. I asked if she would like to join me for a while. She said, “For a while.” I take that to mean that she’ll want to go out sometime in the next hour. That would work out pretty well. We could go to Barnes & Noble and then to dinner. In the meantime, she is content with her iPad. I don’t know what we would do without it.

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Something New, Another Sad Moment

After returning home from dinner last night, Kate got her robe and her iPad and came to the family room where I watched the news while she worked on her iPad. At 8:30, I told her I was going to take a shower. She said she would come back to the bedroom. As I was getting ready for my shower, she came into the room holding her iPad under her arm and asked in a very childlike way, “What do you want me to do now?” I told her I thought this would be a good time for her to get ready for bed. She looked like she didn’t know what to do. I asked if she would like me to get her night clothes for her. She said she would. I brought her a gown and the robe she had taken to the family room earlier. She was seated on the side of the bed. I placed the gown and robe on the bed beside her. She asked, “What do I do now?” I told her she could take off her clothes and put on the gown. She still seemed unsure what to do. I suggested that she take off her top first. She did that and then looked to me to tell her what to do next. I told her to take off her bra. She did that. She looked to me once again for instructions for the next step. I told her to take off her pants. She did and waited again for my instructions. I told her to take off her underwear and to put on her “night time” underwear that I had earlier put on the bed. She did that. Then I told her to put on her gown. As she started to do that, I walked away to the bathroom. She called for me to help her. She couldn’t put it on. In fairness to her, I think it is a challenge myself. I am not going to give her this gown again. We worked together to get it on. She got into bed with her iPad. I took my shower. When I got out, she had put away her iPad and was off to sleep. Based on the amount of sleep she had gotten during the previous night and the day, she should have had trouble going to sleep. It wasn’t a problem.

This was not the first time that I have helped her put on one of her gowns; however, the experience last night was very different. She seemed completely unsure of what to do from the time she walked into the bedroom until she was dressed for bed. Earlier in the week, she had told me, “I’m just going to let you make all the decisions.” That was the first time she had said that. The fact that last night’s experience came a few days after her statement is a another sign that she is softening her desire for independence. That’s a sad thing for me.

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So how am I feeling?

I often think that readers can tell how I am feeling simply by reading my posts, but periodically I feel I should be more direct. Sometimes, I think it really is obvious. Last week was a particularly good week for us. I was very upbeat. This week is different. It isn’t because Kate has not been in a good humor. She has. I think it is her sleeping so late that is bothering me. Today is the third day this week that I have had to wake her. One of those days I got her up so that we could get to lunch and get to an appointment with an orthopedist. Today, I needed to get her up so that we could have lunch before the sitter arrives at 1:00. I waited until 11:00. She was sleeping soundly, but she got up without a fuss. In the early years after her diagnosis, she would not have gotten up so quickly or cooperatively. That changed about 6-12 months ago. I see it as part of a pattern of changes that involve accepting what I tell her.

I often encourage people to recognize the differences from one individual to another. We’re not all alike, but I think the experiences of two friends have had an influence on me. One of those was a former roommate, Charlie Hardwick, with whom Kate and I visited last fall in Dallas. He, too, had dementia. I had been in periodic communication with his wife, Nancy, also a college friend at TCU. Based on what she had said about her husband, I thought he was a little ahead of Kate in the progression of the disease. A few weeks after we had been together, he died. Nancy told me that a short time after our visit, he started sleeping more, and then just went down hill. I was shocked at how rapidly he had declined.

I have another friend whose wife died about five months after I last saw her. I had been keeping up with her husband for several years. I also knew that she was further along in her dementia than Kate, but I never imagined that she would be gone so quickly.

These two situations have sensitized me to the fact that people can can decline quickly. That has caused me to observe Kate even more closely; therefore, the change in her sleep pattern has been of more concern than just my wanting her to get up so that we can have lunch together.

Intellectually, I recognize that what happened to our two friends doesn’t mean Kate will experience the same fate. It is very likely that she has a good bit of time ahead of her. On the other hand, I know that it is also possible that she won’t.

One other thing may account for my melancholy outlook relates to her increasing dependence on me. She appears to be at ease with that. In the past, she has been more insistent on doing things for herself. She is also more cooperative about everything. As I’ve noted in previous posts, this makes life easier for me. The downside is that it makes me sad to see her lose her independence.

An hour ago, I returned home to relieve the sitter. Kate was sound asleep on the sofa. Mary said she said she felt like resting and had been asleep about thirty minutes. That gave me a chance to talk briefly with Mary. It was interesting to hear her talk about Kate. She mentioned how sweet she is. She also told me that they had driven by the high school our children had attended and mentioned it to Mary. It is clear that there are lots of things that she sometimes remembers. I am sure the sight of the school served as the trigger for her to remember that our children went there.

After Mary left, I let her continue to sleep. She slept another twenty minutes before getting up. When she came into the kitchen, she was carrying her cup and iPad. She was ready for Panera. We’ve been here about twenty minutes and will leave for dinner shortly. Because of how long she slept last night and the nap she had this afternoon, I should expect her to be wide awake at bedtime. If she isn’t, that will probably add fuel to my fear that she is entering a period in which she requires more sleep than in the past. I hope not.

Lest my children, who may be reading this, begin to worry about me, I feel compelled to say this. Despite this moment of sadness, I am still getting along well. In this blog I try to convey what our lives are like as we live with Alzheimer’s. Most of our experiences have been good ones. Those experiences are not over. Most other moments will be more uplifting than this one. I believe, however, that I should let you know about the more difficult times. I wouldn’t want anyone to think we have skirted around the challenges. We have those, but, for the most part, we have been able to live full and fulfilling lives throughout this journey. I continue to be very grateful.

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I think Kate’s trying to mimic me.

If you are a regular reader of this blog or someone who knows me well, you are aware that I have a few OCD tendencies (well, maybe more than a few). Kate has never been this way at all. Alzheimer’s has made our differences even more pronounced. Recently, it has come as a surprise to see her exhibiting some of my characteristics. After a long period of time during which she didn’t put up her clothes, she started doing so. She doesn’t always do this immediately after taking them off, but she no longer lets them accumulate on the beds, furniture, and floor as she did in the earlier stages.

The next behavior involves making up the bed. Over the course of our marriage, I recall hearing her say that her mother had taught her to make up the bed right after she gets up. This is something she has always done and continued for the first few years after her diagnosis. Gradually, however, she got out of the habit. Over the past few months, she has started again. She didn’t do it immediately and not nearly as well as she did before, but she was making a good stab at it. Within the past week, I have noticed that she takes more time and is doing a much better job. I’ve even noticed her looking over what she has done and doing a little straightening where she thinks it is needed.

What has been more surprising is her cleaning up at Panera. Their drink dispensers can be a little tricky. It is challenging to fill your cup without some of the drink dripping down the side of the cup and often spilling on to the counter. When this happens, she has started getting a napkin or two and wiping the entire counter, and she does it with as much care as she can. That’s not something she would have done before. In addition, crumbs always fall from her muffin to the table. When we are ready to leave, she has become very careful about getting up each and every crumb.

One final behavior involves a white board on our island. I got it a few years ago to let her know what day it is, appointments we have that day, and where I was if I were not at home. Over time, she stopped reading what I was writing, so I just put the day and date. I finally got tired of that, especially because I could not tell that she was reading it. I bought a digital clock with very large print that provides the same information and the time as well. It sits on the counter across from the island. Now the white board has a single purpose. That is where I put her morning medications. I use that because she can see them easily against the white background.

That was a lengthy introduction for what is a very short story. The other day when she was taking her medicine, she turned the white board at an angle. Then she said, “I keep changing this, and someone else changes it back.” To the best of my knowledge, that is the first time this has occurred, but what struck me was her desire to have it in arranged in a particular way. That seemed to be totally out of character. On reflection, I do recall that she has always had particular arrangements for the knick knacks on furniture or book shelves. Maybe she is just treating the white board in the same way. It’s a Knick Knack on the island. If so, that would make it a normal behavior for her. At any rate, I am leaving it at an angle just the way she arranged it.

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Kate can be playful.

At lunch today, Kate looked at me across the table, smiled, and said with confidence, “Ask me where we are.” I said, “Where?” She said, “McAlister’s.” I said, “Wow.” Then she said, “Well, it wasn’t that hard.” As she said that, she looked at a sign on the table with the name printed on it. I followed that by saying, “I thought you meant what city.” Then she said, “What city?’ I asked, “What do you think?” She answered, “Fort Worth?” I told her Knoxville. She seems never to remember that, and we’ve lived here almost 47 years.

This occurred without any sense of frustration or concern about not knowing where she was. That is quite a contrast with the way she was in the early stages of the disease. She experienced a good bit of frustration then. I suspect that is largely a result of her no longer connecting her poor memory with her diagnosis. I also notice how open she is in acknowledging things she doesn’t remember. It is very natural to ask the names of people we see as well as our children and even me. While it always saddens me to see her memory deteriorate, I am also glad that she can be honest with me. I like to think it is a good thing that she has someone with whom she can be so open.

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Kate’s Treats

Yesterday after leaving the orthopedist, we went to Panera. We hadn’t made it in the morning, and Kate said she was a little hungry. I got her a muffin. There’s a nail salon a couple of doors down from there. It had been too long since she had had a manicure and pedicure, and they were able to get her in and out before dinner. I used to see that she went there at least once a month, but somehow got out of the habit. She doesn’t express any special pleasure when she goes, but she used to enjoy it. Besides she needs to have her nails trimmed.

Two or three years ago I also arranged for her to make regular visits to a nearby spa. She goes every two weeks and alternates a massage one time and a facial the other. This is not something that was a regular part of her life before I started it, but I thought it would be good for her to have something that was a treat and something she could do without me (except for making the arrangements and providing transportation). Like the mani/pedi, she doesn’t express a lot of enthusiasm, but I believe she must enjoy it. The only comment she makes is how soft and smooth her skin feels after the facial. She’s right. It does.

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A Day of Dependency

Yesterday was a day in which I noticed Kate’s dependency more than some other days. That began when I got her up rather than letting her to wake up on her own. As noted in a previous post, this was to insure that we were able to get to lunch and then to an appointment with an orthopedist. Though we usually go to Panera, I passed that up because it was already time for lunch. Kate never seemed to notice. As she usually does when we go out in the car, she was quiet but at one point asked, “Do we have children?” I said, “Yes, we have two children. We have a daughter named Jesse. She and her husband, Greg, have twin boys. We also have a son.” Before I could go any further, she said, “Kevin.” I said, “That’s right.” She asked, “What’s his last name?” I told her, and the conversation ended. The rest of the way to lunch she sat quietly and patiently waited until we stopped at Carla’s Trattoria. It was only when we were inside that she asked, “What’s the name of this place?” When we left Carla’s, she asked, “What is your name? I told her. Then she asked, What is your last name?”

From Carla’s we went directly to the orthopedist’s clinic. Although I had told her where we were going, I am sure she had no idea until we arrived. I’m not even sure when she recognized she was in a doctor’s office. I suspect that occurred in the waiting room. She never asked any questions. Instead, she was asked questions, none of which she could answer. That includes things like “How long has the pain been bothering you?” “What, if any, surgeries have you had?” I asked Kate if she would like me to answer. She said she would.

During the day, she exhibited some of her typical behaviors. She asked me if she should take her cup into the restaurant, if she should take her iPad, etc. One new thing happened on the way to dinner. Out of the blue she said, “From now on I just want you to make the decisions.” This was not said with any sign of irritation as it could have been if I had been trying to control her when she didn’t want me to. Instead, it seemed more like she was simply asking for help. She followed that with, “You can still ask what I want, but I trust you to make the right decision.”

When we got home, she asked some of the questions she often asks, “What now?” “Should I get ready for bed?” “Can I use the iPad.” By themselves, nothing was unusual, but she seemed to behave in a more dependent way than usual. It was as though she were in a “fog,” less sure about everything. I don’t like seeing her drift away.