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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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Life can be so confusing.

I often try to imagine what a day like today must be like for Kate. I know she can’t remember what city she is in, and I mean right here at home in Knoxville. She doesn’t know what restaurant we are in or what she eats even though I usually order the same thing for her. When we are headed someplace in the car, she never knows where we are going even though I have told her. I do know that she is often curious about where we are because she asks, “Where are we?” When I tell her something, she sometimes says, “I’ve already forgotten.”

Today was a typical one until 2:00. Kate woke up a little earlier, and we arrived at Panera shortly after 9:30. She was feeling a little tired, so we were back home at 10:45. She went to our bedroom to rest. I don’t think she fell asleep but she was in bed until I got her up for lunch shortly after noon. Then we were off to lunch.

We were back home at 2:00. I told her we were going to a visitation for a friend and would need to change our clothes before leaving. She couldn’t remember who had died even though he was the spouse of someone with whom we have had a relationship since I was on the UT faculty in 1971. I asked if she would like me to pick out something for her to wear. She said that she would appreciate that. I got her a pair of pants and a top with an attractive cardigan sweater to wear over it. I brought them to her and laid them out on our bed. I went to the bathroom to brush my teeth. When I came out, she had thrown the pants and sweater on her chair. I found the top on the floor. I said, “You didn’t put on your clothes.” She said, “Where are we going?” I told her again and showed her the clothes she was to wear. I went to the closet to get something for myself. When I came out, she was about to put on her cardigan sweater (no buttons) without her top. I told her to put on her top before putting on the sweater. She looked confused. Then I told her that first she should take off the top and pants she was wearing. When I said that, she congratulated me by saying, “Now that was clear.” That was all it took. She got dressed, and we left. I think I should say now that I was very cool during this process. I didn’t want to prompt a panic attack. I do everything I can to avoid those.

In the car, she asked me where we were going. It was then that I told her that we were going to a memorial service for someone I know from the Y and then we would go to the visitation for our mutual friend. I knew when I said it that was too much for her to grasp though I don’t think I could have prevented it. As it turned out, I didn’t see anyone that I know at the service. Of course, Kate didn’t either. She was incredibly patient throughout.

After the service, we headed to the visitation. Several times on the way over, she asked questions about who had died and the person’s connection to us. When I mentioned our mutual friend who had also been a professional friend with the school district, Kate couldn’t remember her. When we arrived at the funeral home, she asked if it were a church. She asked the same thing inside and as we got to the car afterward. She also asked who had died. The whole afternoon must have been a very confusing one for her. I really felt sorry for her, but she handled herself beautifully. I was the only one who knew just how confused she was.

Once inside, she told me she remembered being there before. She pointed to specific parts of the hallway that she recalled. As you might have guessed, we had never been to this funeral home. It is a fairly new one.

We waited in line for about twenty minutes before seeing our friend whose husband had died. Kate asked if she could walk around a room on the other side of the hall where we were in line. I told her she could and pointed to the chapel that was adjacent to the room she wanted to see. I noticed that she stepped into the chapel and looked around before returning to the line. As we were preparing to leave, we walked by the room, and I pointed to the chapel again. She was completely surprised and wanted to look at it again.

We spoke with our friend in the receiving line and then moved to the end of the room where they had set up a television with a slide show of pictures of our friend’s husband. While I was chatting with a woman that had been standing in line with us, Kate went to an adjoining room where they had some light refreshments and a display of various pictures and mementos of the deceased. When I got to the room, she said she wanted to show me a picture of someone who looked like her mother. She couldn’t remember where she had seen it, but I saw a picture that included someone I thought had to the one she was talking about. I showed it to her, and she confirmed it. Shortly afterward as we were nearing the exit of the funeral home, we got engaged in a conversation with the owner. Kate said she wanted to see the picture of “her mother.” She couldn’t remember how to get there. I pointed in the direction of the end of the hallway and said, “Turn right and it’s the first door on your left.” I knew she would not be able to find it, but I also knew she couldn’t go much further and get lost. Then a friend who was there offered to take her. I accepted. In a few minutes, I met her in the room with the picture. I took her over to the picture. It became obvious that she thought it was her mother. She looked very teary. In situations like this, I always have to decide whether to let it go or to tell the truth. In this particular case, I told the truth. I said, “It looks a lot like your mother, but she’s not. She accepted that without a problem. I am glad. I would have felt very guilty if she had been hurt by the truth.

Then we walked toward the exit. As we did, I saw one of our friends’ son and pointed him out to Kate. When I mentioned our friend, she had forgotten that our friend, as the wife of the deceased, had been the first one in the receiving line. We had already seen and spoken with her, but she said, “I want to speak to her.” In this case, I didn’t tell her the truth. I just said, “Let’s go back to the room where she was before and see if you can speak to her.” By this time, most of the crowd had dispersed. We found her talking with a member of the music faculty. Our friend’s husband had served as department chair for almost 30 years. It turns out that the faculty member with whom she was talking was also our son’s piano teacher during his junior and senior years in high school. We had just seen him at dinner the night before. We walked over to join them. Kate greeted our friend as though it had been years since she had last seen her. Our friend is aware of Kate’s diagnosis, so I don’t think she thought much about it.

It has really been a good day. I am glad that we went to both the memorial service and the visitation. I wish that it had not been so confusing for Kate, but she seemed to get along pretty well even in her confusion. In addition, the pain in her knee has been worse today. She has walked even more slowly than usual and took a good bit of time getting into and out of the car as well as her chair in a restaurant. She hasn’t complained, only acknowledged the pain. She is remarkable.

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How quickly the memory fades.

We’re in Barnes & Noble right now. We came here after dropping off Kevin at the airport for his flight back home. A couple of minutes ago, we looked across the table at each other. She pointed to her iPad. The expression on her face signaled a question. At first, I couldn’t figure out what she wanted. Then I realized that she was asking if she could work another puzzle. I told her that would be fine. I wonder why she asked after she had been working them for a full hour or more? One more mystery.

As she went back to her iPad, I said, “I’ll bet Kevin is in the Atlanta airport right now.” She said, “Where?” I repeated myself and then said, “He is changing planes to catch a flight to Lubbock.” Then she said, “Who are his parents?” I said, “You and I.” Then she said, “What’s his name again?” I said, “Kevin.”

In a few minutes, I received a text from Kevin saying he was at the gate for his flight to Lubbock. When I told Kate, she asked, “Where is he going?” I said, “To Lubbock.” She said, “For a job?” I said, “No, he is going home. That’s where he lives.” She answered, “Where has he been?” I said, “Here.” She said, “Oh, that’s right.”

It always seems strange to observe how well she functions in many ways and then how quickly she can say or do something so revealing of her Alzheimer’s. I think of the connections in her brain like an electrical wire that is partially broken but hanging by a thread. Sometimes the electricity flows through despite the break. Other times it doesn’t. It’s hard to predict when each will happen.

As I was writing, she said something. I thought she was ready to go, but she was trying to solve a problem with her puzzle. I asked if I could help her and fully expected her to say yes. She surprised my by saying, “I got it.” Despite her growing dependence, perhaps because of it, she still works hard to do some things on her own.

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More Forgetting and Confusion

Our son, Kevin, arrives from Texas today. Since he learned about Kate’s diagnosis, he has visited us two or three times a year. Each time, he comes without his family and stays several days. That has enabled him to devote more time to be with Kate and see for himself how she’s doing. During each of his previous visits, he has felt good about how well she is getting along. He calls frequently, and I have been very open with him and our daughter. He is aware of how much her memory has declined. It is quite possible, however, that he may not observe any radical difference since we were with him and his family in January.

The reality is that she has experienced notable changes since his last visit in Knoxville this past September. I notice differences more than ever. One of those is her frequent asking me for the names of people and places. She seems to be developing a comfort level in expressing her difficulty remembering things. I suspect that she has had this problem for longer than I am aware because previously she didn’t ask for help recalling names. She is obviously working hard to remember them.

She has become very open about not knowing where she is at any given time. Frequently, wants to know what city we are in. Other times, it is the name of one of the restaurants we frequent so often. Several times over the past few days, I have mentioned that “our son will be with us on Saturday.” Each time she has paused a moment and then asked, “What is his name?” Yesterday she asked about his family. She couldn’t remember the names of any of them. I went through the names of each one, but recognized that she won’t remember them.

As I said in a post a few weeks ago, connecting the name with a person is one of the most superficial levels of knowing a person. I am confident that when she sees Kevin today, she will know exactly who he is. I also know that for someone with Alzheimer’s forgetting names is a first step in the process of not remembering the person. That makes me sad. It also makes me wonder when I will discover that she no longer remembers me.

Memory problems are not the only signs of change that I am observing. She also shows more confusion. She has greater difficulty putting her clothes on properly. Very often she puts her clothes on inside out or backwards. When we arrived at Panera yesterday, I noticed that she was wearing shoes that didn’t match. I didn’t say anything to her about it. I didn’t think it was that important. Before we went to dinner, I did mention it. She looked down at her feet. At first, she didn’t notice that she was wearing two different shoes. Then she said, “You’re right.” She went to change shoes. When she returned, she hadn’t changed shoes at all.

As we left the restaurant, I said something about being near our first house in Knoxville and also the house where Ellen had lived before her stroke two and a half years ago. I told her I would drive by both houses. I also said something about how long we had lived here. She then asked me if we were in Fort Worth.  I reminded her that we live in Knoxville.

Months ago I reported that she almost always asked me if she could work in the yard when we came home. That has gone away since she hasn’t been working in the yard. She is doing something similar. She seems to be unsure about doing things that one would not expect to be unsure of. For example, when we came home from lunch yesterday, she pointed to the bathroom off the laundry room. She was asking if she could use the bathroom. When we arrived at the restaurant tonight, she asked if she should take her cup with her. I told her they would have glasses for us. Just before leaving a restaurant the other night, she asked if she should take her glass with her or leave it on the table. Last night at dinner she asked (again with hand signals) if she could drink her Dr. Pepper. All off these things suggest that she is confused as to what is the right thing to do, and she is looking to me for guidance. She is more confused than I had guessed.

Despite that confusion, we ran into three couples from our church at dinner last night. She was able to greet them as easily and naturally as if she didn’t have Alzheimer’s. That seems to be well ingrained in her. I hope that continues for much longer.

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Simple Pleasures

Recently, I have connected with a number of other caregivers on Twitter. Most of them are authors who have written about their experiences as caregivers. Others are people who are working to educate the public about the variety of issues surrounding Alzheimer’s and other forms of dementia.

It has been especially encouraging for me to discover how many other caregivers are able to find moments of pleasure in the midst of the changes that are ongoing for the ones they care for. It is not that everything is rosy or that no one has experienced frustrations and other challenges. It’s that there are always moments of pleasure as well.

It’s almost 2:30 p.m., and Kate and I have faced both the good moments and more challenging ones today. Her good mood from the very beginning of this day is sufficient to make me say it’s been a good day, but there is much more for which we are both grateful. It’s a cool, rainy day, and we are sitting in front of the fireplace in our family room, something we both enjoy but don’t take advantage of very often. Of course, I have music playing in the background. She is working puzzles on her iPad while I write this entry for my blog. All is well right now, and I am confident the rest of the day will be the same.

At the same time, we have had a few moments I would have preferred not to have experienced. Even though she’s been in a good mood, she has gotten irritated with me a few times. One of those was when she thought I was taking too long to get ready for Panera this morning. When we got in the car, instead of saying something like, “Give me a break. I’ve been waiting two hours for you to get up,” I said, “I guess I do keep you waiting sometimes.” She responded in a very forgiving way and said, “You don’t keep me waiting very often.” Her irritation was over.

Twice at lunch she asked me “Where are we?” I told her Knoxville. The second time I added, “Would you like to guess what state?” She quickly said, “Tennessee” and added, “See, I’m smarter than you think I am.” It saddens me when I see her unable to easily identify where we are when we are not traveling. Just a few months ago, this would not have been a problem.

When I ordered a kale salad at lunch, our server told me they were out of kale. I ordered another salad and asked if I could have a serving of brisket with it. As she walked away, Kate said, “What was that all about?” She hadn’t been able to follow our very brief and simply conversation. When I see instances of her being confused over normal things like this, I have a greater appreciation of her inability to understand what is happening in movies or plays. She is able to enjoy musical theater and opera because of the music itself even if she doesn’t have any idea of the plot or who are the primary characters.
I know all too well that in the long run that many of life’s current pleasures will not provide the same enjoyment they do now. For now, we live in the moment and are grateful.

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Getting Back to Life as Usual

Yesterday Kate and I took what I would call our first steps in getting back to normal after the flu. Kate was up somewhat earlier, and we got to Panera before 10:30. The best news of the day was that Kate’s cough has virtually stopped. That made for a much nicer day. We went directly from Panera to lunch and were back home in time for the sitter. Kate is still tired. She got right into bed when we got home. That is where she was when the sitter arrived. I brought Mary in to say hello and told Kate I was off to the Y. She remained in bed and stayed there another two hours or more according to the Mary. That is the first time I recall her resting so long with the sitter here.

I went to the bedroom about fifteen minutes ago to see if she were still sleeping. I saw that she was up. When I walked into the bathroom, I noticed that she had had another accident and went to get a towel to clean it up. When I returned, she was standing by our bed with her underwear and a pair of pants in her hands looking a bit confused. I asked if I could help her, she nodded. I asked what she needed. She said, “Something to wear.” In moments like these she looks so helpless. It is painful to watch. I went to her closet and picked out a top to go with the pants she had picked out (the ones she had worn yesterday and thrown over a chair beside the bed). I gave her the top, and she proceeded to the bathroom to take a shower. She can be very groggy in the morning anyway, but the kind of confusion I saw this morning can only be another sign of Alzheimer’s. It is just a little thing, but I see little things like this making their way into our lives. There’s no way to stop it.

This afternoon Kate has a facial at 2:00. Then we have Broadway night at Casa Bella this evening at 6:00. I am optimistic about our having a nice day.

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More Confusion and Growing Dependence

After dinner tonight, we came back to the house and prepared for our normal relaxation time at the end of the day. I got Kate’s medications and put them on her bedside table along with a glass of water. Shortly, she came into the room and started to take her pills. She had only taken a couple when she must have turned around to do something else. Then she asked me if the remaining pills were for tonight or in the morning. This is something she has said on several evenings lately. Prior to this she simply assumed they were all the evening medications. Like many things, I can’t say what accounts for the change. It is just among the variety of things that go along with Alzheimer’s.

A little later, I got ready to take my shower when I heard her call, “Help.” It wasn’t a frantic call, but it was clear she needed something. I came out of the bathroom to see that she was struggling with her robe. It was inside-out, and her left arm was in the right sleeve. She couldn’t find the other sleeve. I got her straightened out and said, “Another case of teamwork. We work well together.” She thanked me and gave me a hug. It’s one more sign of her increasing dependence.

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Symptoms

It has now been an hour since I went outside to get Kate. About 20 minutes ago, she had gotten out of the shower and was walking into our bedroom in her robe. I had thought that she would be dressed for dinner. I went into the bedroom. She said, “I did what you told me.” I said, “What was that?” She said, “To come in here.” (As you may have guessed, I hadn’t given her any instructions about what she was to do. I only brought her in so that we could get a shower and go to dinner.) She then picked up her iPad and asked (by motions, not words) if she could get in bed and work on it. I said that would be fine and that I would check in a few minutes to see if she was ready to eat. I have now done that, and she went back to her room to dress. My expectation is that she will return dressed and ready to go out. Will I be right?

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Morning Confusion

A little earlier Kate was in the bed working on her iPad. I heard her express some frustration and say something about not being able to get this “thing” working. I asked if I could help. Then I walked over to her. She handed the iPad to me. I saw immediately that she was not in her jigsaw puzzle app but in photos instead. I got her back to her puzzles, and she said, “I can’t live without you.” I said, “You don’t have to; I will always be here for you.” I doubt that she can envision what the future holds, but moments like these are full of meaning for me.

Recently I have been struck by the fact that it seems like she has the most trouble with her iPad during the morning, especially while we are at Panera. At other times of the day, for example at night when you might expect her to be worn out, she is able to work on the iPad for long periods of time without needing my help. I wonder if it is just a morning grogginess that is the basis of the morning confusion.

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Travel and Confusion

Kate and I returned home from Asheville this afternoon. Since our arrival around 2:15, she has been outside. That’s two hours. I believe this will be therapeutic for her. I was not surprised to discover that her confusion continued this morning. This is even easier to understand because she woke up in a somewhat dark room without knowing where she was. After we got beyond that, it was obvious that she was not in a cheerful mood. My morning cheerfulness and expressions of love and affection were not welcome. She wasn’t mean-spirited at all. She just wanted quiet.

When she was dressed, I took her to the lobby for breakfast. She didn’t show much interest in anything but picked up a pastry. I pointed in the direction of a table and said, “Let’s sit at that table over there.” She obviously missed that and didn’t follow me to the table. I looked around and saw that she had taken a seat at another table close to where we had been standing. I brought her over to the table where I had put her breakfast. She didn’t converse much which is not unusual at all, but she just didn’t look cheerful. After breakfast, we decided to return to Knoxville without having lunch in Asheville.

As we drove out of town, I tried to cheer her up. I said something about our having had a good time and how much we had enjoyed the hotel, the meals, and the play. She wasn’t very responsive. Once on the highway, I reached across the console and put my hand on her leg. She lifted my hand up and pushed it away.

About an hour into the trip, she was restless. I decided to take a lunch break. I didn’t want to take a long time; so I stopped at Wendy’s. I asked her if she would like a chicken sandwich or a hamburger. She said, “I don’t care. Just order for me.” We sat quietly through lunch and then continued home. Although she didn’t say much, she appeared to be in a better mood when we reached home. It is unusual for her to be in a depressed mood this long. I am eager to see how she feels when she comes in for dinner.