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Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.

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Another First

A few minutes ago, I was standing beside the bed as Kate was getting into it. She said, “Are we married, or are we going to get married?” “I said, “We love each other. It seems we should be married.” She said, “Me too. Good night.”

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A Follow Up on Kate’s Dependence

In addition to the signs of Kate’s dependence I noted yesterday, there are several others I would like to mention. One of those is her telling me on two or three occasions recently, “I want to go wherever you go.” I am not sure but immediately wondered if she might be making reference to the times that I leave her with a sitter. Whatever she meant, it was clear that is looking to me for security.

There are daily variations on “going where you go.” For quite some time, she has wanted me to walk ahead of her when we enter a restaurant or other building because she never knows where we are headed. When we returned home from dinner last night, she said, “I’ll follow you.” That is the second time recently that she has said that. Apparently, she didn’t immediately recognize our home and preferred to depend on me to know where she should go. Recently she asked me to wait for her right outside the restroom in a restaurant. Again, it was a matter of her not knowing how to get back to our table.

Another sign of dependence is the increase in the number of questions she asks. We are having more conversations like one that occurred at dinner last night. She began by asking my brother’s name, something she does occasionally. When I said told her Larry, she asked his last name. After that, she asked what he did for a career. I gave her a more complete answer than usual. She didn’t once tell me to stop or that I was giving her “too much information.” It seemed as though she were very seriously interested and trying understand what I was telling her. She was quiet for a few minutes. The she asked, “Where are we right now?” I said, “Do you mean this restaurant or the city?” She said, “The city.” I told her we were in Knoxville. She said, “So where we live.” I said, “Yes.” Then she asked, “Are we going to live here for the rest of our lives?” This surprised me because she has told so many people that we are moving to Texas. I answered her question by saying, “I’m not sure. I think that will depend on our health. If either of us should have any special health problems, that could lead to a move.” She seemed to accept that without a problem.

When she opens conversations like this, I feel a special closeness to her. Much of that arises from the fact that she doesn’t have anyone else with whom she can talk so personally. When we got into bed last night she was more talkative than usual. This conversation opened with her talking about how fortunate we are with respect to our marriage and our children. That led to her admiration for her mother and how much she had meant to so many people. Then she said, “I can’t even remember her name.” I told her and she said, “I know that. I just couldn’t call it right then.” I said, “Not to worry, I’m always here to help you.” Several years ago, she gave me the nickname “MM” for “My Memory.” I have found that she does not always remember that anymore. That doesn’t surprise me. She is slipping on my real name now. These are touching moments for me. She is so open, so authentic in these conversations. They remind me of what a great responsibility it is to be a caregiver for someone with dementia. They also remind me of how fortunate we are. I know many caregivers have to face far more struggles than we have. I feel for them.

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A Rare Moment

Over the past 2-3 years, Kate has lost her interest in television. I suspect that is because it’s too hard for her to follow. Until the past year or so, she sometimes turned on the Today Show in the morning. She rarely, if ever, turns the TV on these days. I record the PBS Newshour and watch it after we return home from dinner. She sits with me and works on her iPad. I sometimes watch Nature as well. When I do, she occasionally looks up and notices something that catches her eye. Otherwise, she devotes her attention to the puzzles on her iPad.

Thus, it is something of a rarity that we watched some of the Royal wedding that took place on Saturday. No, we didn’t get up at 4:00 a.m. I recorded an ETV/BBC recording that began at 9:00 a.m. After lunch, we watched the portion that involved the wedding itself. Prior to that Kate had been working on her iPad. She put it down when Harry and William took their places in the chapel and didn’t pick it up again until Harry and Meghan departed in their coach.

Neither of us is a follower of the Royals, but both of us took interest in this wedding. I can’t speak for Kate, but events like this have taken a different place in my life since her diagnosis. During the wedding I was reminded of the wedding vows we took that were very much the same ones as those of the Royal Couple. In particular, the words “in sickness and in health . . . till death do us part” were more meaningful now than at the time we said those same words in 1963. I trust that I am now and will continue to honor that commitment. I have no doubts that I will. It was a rare moment for us to be watching TV together and a touching one for me.

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A Little Thing (to me, that is)

Kate was sleeping so well this morning. She didn’t want to get up, yet she did so without complaint. Showers can be confusing and challenging in new places. With that in mind, I turned on the shower for her and heated the water to the temperature I know she likes. She sometimes expresses her emotion with somewhat heavier breathing and an audible, “Oh, oh, oh, . . .” After she had been in the shower a while, that is what I heard. I immediately thought that she might be having a problem turning off the water. I was right. I turned it off. She was so relieved and thanked me. After more than five minutes. Her breathing was still not back to normal. I could still hear her “Oh, oh, ohs.” I have learned from the past to let her gradually come back to normal. She just switched to “OK, OK, OK.” I looked around, and she said, “Just talking to myself.” I said, “Sometimes that helps.” She said, “Right now it does.” And it seems to be working though it hasn’t stopped.

As a caregiver, I am quite aware of the challenges I face. I am less mindful of those Kate faces. Incidents like this remind me. It is remarkable how well she usually gets along.

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She says she likes to be with me. That’s good; I Iike to be with her.

About thirty minutes ago, I got up from my chair in our bedroom where Kate and I were relaxing. As I started for the kitchen, she motioned me to come over to her. When I reached her, she said, “You know that I always prefer to be with you.” I instantly had a tinge of guilt for leaving her with the sitter this afternoon. I told her I always like to be with her too.” Then I said, “Sometimes I need to go to my Rotary club and to the Y.” She said, “I know you do and you should go. I just want you to know I like being with you.” I told her I appreciated that and reminded her that she had always been that way during our entire marriage. I did a lot of traveling. I never sensed that it bothered her at all. She always let me do what I needed to do in connection with my work responsibilities without making me feel guilty. It’s nice to see that is another way in which she hasn’t changed.

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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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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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More on Sleep

For at least four or five years, Kate has gone to bed before me. When she is ready to go to sleep, I go into the family room where I listen to music and read or work on my computer. Though I sometimes accidentally wake her, she has almost always been asleep when I came to bed. The past three or four nights, however, she has been awake. That in itself is not a problem. I hadn’t thought much about it until two nights ago. Each night she has indicated that she is glad that I finally came to bed. Two nights ago, she said more than that. She said she couldn’t imagine where I was or what I was doing. She sounded somewhat disturbed (not irritated, but afraid). She also went on about it a little longer than I thought would be natural for her.

Her response made me feel as though I had abandoned her. Knowing that she can’t remember, I should have thought about this. The fact that this has been our pattern for so long prevented my even considering that she might get worried or feel she had been left alone. I try not to overthink things like this, but I also don’t want to overlook something that might call for me to make a change in what I am doing.

I have not given her Trazadone for the last three nights. That could easily account for her not getting to sleep. Yesterday, I emailed her doctor about the Trazadone as well as her knee. He said she is already on a low dose, but that I could cut it in half and discontinue it entirely after a week. We’ll see how that goes.

In addition, I might address her concern about being alone by staying in the bedroom with her when she goes to bed. The only complication is that she likes the lights off. I like to have more light. I can easily read a book on my iPad. I usually do that anyway. I started to do that last night, but she assured me she would be all right, and she was. I still found her awake when I got to bed about forty minutes later. She said she was waiting for me. I’ll stay with her tonight.

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Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.