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Tired, Confused, but Enjoying Life

Our lives now are a interesting mixture of good and bad things. As I have said in earlier posts, Kate has been getting up earlier the past few days. That was true again yesterday. For me, that is good news. It gives us a little more time together which I feel is especially important on the days we have a sitter. The flip side of that is that she has also been tired during the day. The past two days she has gone straight to bed upon returning home from lunch. I’m not sure how long she rested (slept?) on Wednesday, but yesterday it was almost two hours. She might have rested longer had I not waked her.

We went to Barnes & Noble where we had another one of those confusing times when she didn’t realize I am her husband. She was on her iPad. I was on my laptop. I reached over and put my hand on her arm. She said, “Are we friends?” I said, “Very good friends.” She gave me a skeptical look. At first, I thought she was playing with me, but it became clear that she was not. I said that we had been married 55 years. She looked surprised and said, “Let’s talk about this later.” That comment suggests that she expects us to be together even though she is unsure of who I am. It also suggests a certain comfort level in being with me. These moments tend to catch me off guard. My rational mind leads me to think that she either knows me or not, and that would cause her to behave in different ways. Instead, she acts like everything is normal. Then she says something that doesn’t match what I would expect. There is so much that I don’t understand.

I am just now beginning to understand that when she asks where we are “right now,” she often thinks we are out of town, almost always in her home town of Fort Worth. As we were coming home from lunch yesterday, she said, “Well, it’s been a nice trip.” On the way home from dinner last night, she said, “Where are we going to stay tonight?” I told her we were in Knoxville and would stay in our own house. She liked that. This confusion might account for the fact that she frequently picks up things to take with us when we leave the house. Often it is a tube of toothpaste and one or two toothbrushes. I have started suggesting that she won’t need them wherever we are going and might as well leave them at home. That has presented no problem. She is becoming very compliant. I suspect that she recognizes she gets confused and trusts me to keep her straight.

The change in her desire for help with her clothes has been dramatic in the past week. It was just a few days ago that she first asked for help with her bra. She has wanted help each day since. She was glad to hear that I have ordered new bras designed for seniors that fasten in the front rather than in the back. I’m not sure that will enable her to do it herself, but I thought it was worth a try.

Last night, we went to Casa Bella for opera night. It was another good evening. Kate expressed a good bit of enthusiasm after each song. Fortunately, the rest of the crowd did as well. She expresses her pleasure audibly during the music. It isn’t too loud. I doubt that anyone other than those sitting at the same table realize it, but I wonder if this could become a problem later on.

She went to bed right away after we got home. That is unusual and is an indication of how tired she was. This morning she got up to go to the bathroom shortly before 6:00. I got up when she came back to bed. As she got under the covers, she said, “Let’s not do this again.” I had no idea what she meant. When I went to the kitchen for breakfast, I noticed that she had not used our bathroom but the one off the laundry room. I am guessing that she forgot about our bathroom. That is not unusual. She has always used the other bathrooms more often than our own.

Despite all the confusion and the changes, we are still enjoying ourselves. I am amazed and happy. That is something I never expected this late in our journey.

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Little Things

As much as I have learned as a caregiver, I never fully recognize all the challenges that face someone with dementia. Two examples come to mind. One just happened. We are still at Panera, and Kate wanted to go to the restroom. She said, “Does this place have a restroom?” I told her it did. She said, “I’ll be right back.” From past experience, I knew that she would not remember where to go, so I said, “Let me show you where it is.” She said, “That would be nice.” I walked her to an area where you can see the “Restrooms” sign about 20 feet ahead. The sign had an arrow pointing to the left. I’ve learned that she has a hard time reading signs, so I thought about telling her to turn left. I immediately recognized that she would see the doors to both the women’s and men’s rooms. Again, she can easily miss the signs, so I walked to the door to the ladies’ room. Thinking she would no longer need my help, I started to walk away when I noticed that she started to push the door on the side where it is hinged rather than the other side with a brass plate. She was puzzled until I opened the door slightly, and she walked in. This is one more step in the learning process. I probably won’t assume she knows which side of the door to push in the future, but there is always something else I will assume she knows. I am always learning. These experiences make me more understanding of people who make suggestions that I will immediately know won’t work. To complicate matters further, if Kate does something at one time, that doesn’t mean that she will have trouble the next.

Yesterday, I was struck by something else one might not think of as a problem. Kate must spend at least 6-8 hours a day working jigsaw puzzles. I don’t think I have mentioned this before, but she often works the same puzzles over and over. She frequently works a puzzle again right after finishing it. I am not sure why, but I do know that she likes the colors of some puzzles more than others. She also likes puzzles with cats. She probably has 150 puzzles on her iPad, but she still works several of them over and over again. I make this point because one might assume that this repetition makes it easier for her to complete those puzzles, but I see no indication that is true. At Barnes & Noble yesterday afternoon, she ran into a problem and asked for my help. She had completed all but one piece of a 16-piece puzzle, but she couldn’t figure out where that piece went. I pointed to the empty space and then to the piece that went there. She didn’t initially understand, but she finally moved the piece into its proper place. Coincidentally, as I was writing the last couple of sentences, she had the same problem with two pieces left.  I am just glad that she doesn’t seem to experience much frustration when she has to ask for my help.

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An Early Start Today

I don’t know what has happened, but Kate was up early again this morning. At 8:35, I heard her say, “Hey.” I was in the kitchen. Before I could get back to her, she had said “Hey” a couple of other times. Note that this is a new way to call me. Until the past few days, she has called my name. It may be that she is substituting “Hey” because he doesn’t remember my name. She was standing in the middle of our bedroom and wanted to know what she should do. I asked if she were ready to get up. She said she was, so I told her she might want to take a shower. She said, “Where?” I pointed to our bathroom. Then she asked about her clothes. This was a morning I had slipped and not put them out for her. I said I would be glad to get them. She said, “That would be nice.”

Fifteen minutes later, I checked on her. She was sitting in a chair across from the bed where I had laid out her clothes. I asked if she needed anything. She said no. Then she asked, “Who are you?” I gave her my name and said, “I am your husband.” She gave me her usual look of surprise. My curiosity got the better of me, and I asked, “Who did you think I was? Your boyfriend?” She said, “I don’t know.” I went to the bathroom to brush my teeth. When I returned, she said, “Are you my father?” I said, “No, I am your husband.” This time she didn’t look surprised and said, “I guess I’ll get used to it.”

I checked on her again at 9:40, she was in bed. It is not uncommon at all for her to get back in bed. Normally, she does this before dressing. I could see her top and pants on the floor. I asked if I could help her. She said, “Get me some clothes.” That was not said as a command but as an answer to my question. I handed her the top and pants. I asked if she were wearing her underwear. She said no. I found them and gave them to her. Her shoes and socks were on the bedside table. I said, “I’m going to leave you and let you dress.” She said, “Don’t leave me.” This, too, was not said with the sound of an order but as a plea. It turned out that she thought I was going to leave the house, and she would be alone. That sent me an important message about the value of having a sitter. She may prefer having me to having a sitter, but she doesn’t want to be left alone.

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Examples of Confusion/Memory Problems

On the way home from dinner last night, Kate said, “It’s been a nice trip.” I said, “Yes, it really has.” She said nothing else the rest of the evening that she suggested she thought we were on a trip.

About 9:00 last night, I brought Kate her night gown and told her it was getting close to bedtime. I was about to put it on the bed where I usually put it, but she wanted me to put in on the ottoman near the chair where she was sitting. Fifteen minutes later, she got up and went to the bathroom to put it on. She came out in a few minutes with the gown in her hand and asked if she was to put it on. I told her she was. By the time she walked across the room to her chair, she had asked me three additional times if she should put it on.

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Another Nice Day. Confusion is a Constant

We didn’t do anything special, but yesterday was another nice day. Kate was cheerful all day. She got up rather easily around 10:00. I had turned on some music about 30 minutes earlier. I think she was awake most of the time between then and when I got her up. We got her muffin at Panera and then went to lunch at Applebee’s.

She was especially interested in my name, her name, and the names of her parents at both places. This was another of those times she was also confused about who I am and not just my name. This came up when she asked her name. When I told her, she said, “Where did Creighton come from?” I told her that was my last name and that she had taken it when we married. As on other occasions, she was surprised that we are married. This time she said, “Well, I guess it could be worse?”

Things went very well with the sitter. Mary was waiting for us when we returned from lunch. Kate asked who that was. I told her it was Mary who stays with her when I go to the Y on Wednesdays and Fridays. She didn’t express any displeasure at that. She greeted Mary warmly when we got out of the car. I set up YouTube videos of the Tabernacle Choir for them to watch. Kate was especially eager to watch them. When I got home four hours later, they were still watching. I was surprised. It is a very rare event if Kate remains in one place for four hours. I suspect she didn’t even go to the bathroom. Right after Mary left, Kate said, “I want to go to the bathroom. Where is it?” I haven’t mentioned this before, but on a number of other occasions she has asked the location of the bathroom. Once she called me as she was walking to the bathroom to ask if the toilet was working. That may have been prompted by a plumbers visit three weeks ago.

She got up on her own today. That enabled us to get to Panera at 10:45 for her muffin. I was glad we got off to a good start since Tom and Angie Robinson are coming in for a visit today. They should be here by 11:30. We’ll meet at our house and then go out to eat. We have been visiting back and forth for almost 50 years. We have experienced a lot of changes over the years. I remember when we used to pack up all the children’s paraphernalia and stay overnight. We simplified that later on. Now we just make day trips. We eat out, enjoy one another’s company, and return home. As always, I will be interested in how Kate handles herself. She has changed a lot since they were first aware of her Alzheimer’s, but she still seems to mange well in social situations. There will come a time when she doesn’t. I don’t expect that to happen today.

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Confusion, Gratitude, Dependence

After returning home to relieve the sitter yesterday, Kate and I went to Panera for about an hour before going to dinner. While we were there, we had another of those touching experiences that occur so spontaneously from time to time. And it seems like they occur in such unglamorous places. It began with her saying, “You’re a nice guy.” She made several other complimentary remarks and then asked my name. I said, “I love you.” Her response surprised me. She said, “You do?” I said, “Very much.” Then her eyes filled with tears. She wanted to say more but couldn’t. She just reached both hands across the table, and we held hands for a few moments without saying a word. I wondered why she was so touched. She’s heard me say that countless times before without a tear. I don’t want to overreach in my interpretation, but I believe it is another sign of her recognition that she is losing her ability to do so many things.

I said something about our having been married for 55 years. That brought on another surprise. She couldn’t believe we are married. Very much like she did the last time this happened, she asked if we were really married or just living like a married couple. I assured her we are married. She accepted it but couldn’t understand not being able to remember. Her puzzlement caused me to rethink my efforts to help her retain whatever little memory remains. When I told her we have been married 55 years, I was trying to be helpful in keeping that memory alive. It wasn’t reassuring to Kate. She said, “Are you sure? I should remember that.” Her comment and the look on her face told me it could also be a harsh reminder of how bad her memory is. I don’t intend to make any abrupt changes in what I tell her, but I am going to be more careful of the things I say and when I say them. I will certainly answer her questions directly, but I want to avoid bombarding her with information that might exacerbate her anxiety.

During the time we were at Panera and again at dinner, Kate was very tired. She had gotten up unusually early (before 7:45). That could easily account for her being tired; however, I don’t ever recall her looking or expressing being tired the way she did this time. I thought about how difficult it has been for her to get up the past few days. She has slept that late before, but she has always been able to get up more easily. Once again, I see this as part of a pattern of change is taking place.

At dinner, she said she was ready for bed. When we arrived at home, she said, “Just tell me what to do.” I brought her to our bedroom and suggested she brush her teeth and that I would get her night clothes. It didn’t take her long to get in her gown with my help, something she often delays until later in the evening. She got into bed with her iPad.

For a while, she worked quietly on her iPad while I watched the news. Then she started making periodic comments. At first, she talked about how much I do for her and how much she appreciated it. Before putting on her gown, she asked me if we would be staying here another night. I told her we were. Later when she was in bed, she said she had learned a lot during our marriage and began to talk as though we were in a foreign country. She talked about the advantages we have in the US compared to the people we were seeing. She said she was glad she was with me and proud of the way I was able to relate to the people. She made reference to a group of men that were “working with” me. I wondered if she thought we were part of a work crew cleaning up after a disaster. She said she was proud of the work I was doing and asked if her brother, Ken, knew what I was doing. I told her I hadn’t spoken with him. She asked that I send him an email tomorrow.

Around 7:30, she put down the iPad and said good night. I put on some music and told her I would stay there in the room with her. When I came to bed at 9:45, she was still awake. I suspect she had dosed on and off for two hours. When I got in bed, she was very talkative. At first, I didn’t understand what she was talking about. That’s because she began with an assumption that I already knew. One of the first things she said was, “Weddings can be a lot of work, but they can be worth it.” It took me a while to figure out that she thought we were at a wedding. Several times, it sounded like she might be talking about our own wedding, but I was never sure. She also talked about marriage, pointing out that a husbands and wives will find things on which they don’t agree, but they need to learn how to work them out. She repeated this theme several times. Except for the fact that she appeared to be imagining an experience that wasn’t/didn’t happen and that she was devoting so much attention to it, what she said were very rational, sensible observations about married life.

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Confusion Early in the Day

The other day before leaving for dinner Kate said, “Let me go to the bathroom first. It’s better to be prepared.” I immediately thought about the Boy Scout motto, “Always Be Prepared.” I was never a scout, but I remember that motto. That led me to think about its application to caregiving. (Yes, I relate almost everything to caregiving.)There is little question that those of us playing this role and those for whom we care benefit from being prepared. Of course, one of the things we learn is that there is no way prevent everything. I was reminded of that yesterday morning.

Several weeks ago, Kate fell out of the shower in one of the guest baths. Since then, I have tried to encourage her to use our bathroom. It seemed to me that it would be safer since it has a walk-in shower. Knowing that Kate uses multiple towels after showering and that she grabs whatever she can find, I hang two bath towels on a hook in our shower for Kate each morning. I keep a third towel on the counter directly across from the shower and place a bath mat on the floor beside the shower door. I also put out her clothes and place them on the chair on her side of the bed. I thought that would make it easy to find them because that is where she used to put them. That’s my effort to be prepared.

Sometimes that works quite well. Sometimes it doesn’t. Yesterday was a good example of the latter. I was in the kitchen around 7:45 when I heard a sound from the back of the house. I got up to check and noticed that Kate was in the bathroom next to our bedroom. I heard water running and assumed that she must have been taking a shower. I thought my preparations had been in vane. I went back to the kitchen. Fifteen minutes later, I heard another sound. This time I found Kate standing in the doorway to the family room. I asked if I could help her. She said she would. I asked if she had seen the clothes I put out for her. She didn’t remember. We walked to our bedroom where I saw the top I picked out. It was still on the chair. I located the others on the floor in a guest bathroom along with another pair of pants, top, underwear, bra, and two pair of shoes. I walked to another bathroom and found an additional pair of pants and bra.

Kate was obviously confused. Her memory doesn’t allow her to remember where she puts anything. I tried to envision what must have been going through her mind. It was clear that she had been in her closet and picked out additional clothes. My guess is that she had forgotten she had more than enough to wear in one bath and went back to her closet to pick out another pair of pants but took them into a different bathroom.

At any rate, I got her clothes together and helped her place them in our bathroom where she wanted them. I never quite understand this because she never dresses in the bathroom. She always brings the clothes to our bedroom after her shower. I left her to shower and returned to the bedroom about ten minutes later. She was drying herself off.

At 9:45, I checked on her again. She was resting in bed. I asked if I could help her. She said, “You could get me some clothes.” I told her they were right beside the bed. She asked for underwear. They had been with the rest of her clothes, but I couldn’t find them. I just got another pair from her drawer. I do wonder where the others went.

Before writing this post, I went to Google for more information about the Boy Scout motto. I thought being prepared meant “preventing” problems. According to Boy Scout Trail it means that one is “always ready to do what is necessary to help others. It also means you are ready, willing, and able to do what is necessary in any situation that comes along.” I like that. It’s a great message for all of us who are caregivers, especially at those times when we are most frustrated. I try to follow it. As I write this, I can’t help thinking of Kate. When she pays me a compliment, I often say, “Well, I try . . .” She stops me and says, “You don’t try. You do .  .” I’d like to think that’s what she would say if I told her, “I try to follow that motto.”

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Sleep and Our Daily Lives

Kate’s sleeping later has certainly had an impact on our morning routine. Now it seems to be encroaching on our lunch. Yesterday and the day before, it was much harder to get her up than it has been in the past. We didn’t leave for lunch until 1:50 on Saturday. We were so late that I sent a text to our server at Bluefish letting her know that we wouldn’t be there. We went to Panera instead. Then we came back to the house for the balance of the afternoon. She worked on her iPad for a while. Then she took a nap, something I might have thought she didn’t need.

After dinner, I found a YouTube video of the 10th Anniversary concert of Les Miserables and played it. While this video was not nearly as good as the 25th the music was the same, and Kate enjoyed it just as much as the one we had watched before. At my suggestion, she went to bed a little earlier than she has been doing. I thought she needed the sleep.

The big surprise yesterday was that it was just as difficult to get her up as the day before. Both days I played music and kept going back to the room to wake her. She didn’t want to get up either day. She finally consented but didn’t want to get up. We saved time yesterday since she didn’t take a shower. Still, it was almost 1:00 before leaving for lunch and almost 2:30 when we headed back home. That shortens our day quite a bit.

Despite her sleeping late, she was in a cheerful mood both days. That doesn’t mean there was any improvement in memory or lessening in her confusion. When I went to check on her yesterday, I immediately noticed that she was still in her night gown. Then I saw that she was wearing her pants as well as her shoes and socks. I quickly realized this was a replay of something she did last week. She thought her gown was the top she was to wear for the day. When I gave her the top I had shown her earlier, she said, “Can’t I just wear this one (her gown)?” I told her that was her gown. She looked a little sheepish and said, “Oops, sorry.”

We went directly to lunch at Andriana’s. Our server was unusually eager to see us. I must have neglected to let her know that we were not going to be there last week. She was worried. Then when we were late yesterday, she became even more concerned. It was nice to know that we were missed. We had a good lunch topped off with an enormous slice of a 5-layer cinnamon spice cake with a heavy butter cream icing on top and between the layers. So much for weight control.

From there we went back home where we relaxed about an hour and a half before leaving for a neighborhood association meeting and get together. This is an annual celebration in connection with Halloween and includes a short parade around the neighborhood. She was somewhat reluctant to go, but she enjoyed herself. We were talking with one of our neighbors who mentioned a new puppy that someone had brought. She and Kate walked over to two or three others who were looking at it. At the same time, I became engaged in a conversation with two other neighbors. I looked over to see that Kate was also talking with the group around the puppy. That was good to see.

A few minutes later as we started to walk back to the house, she said, “That’s a nice church.” I said, “What church is that?” She said, “The one we were just visiting.” She was obviously confused. I agreed. Then she asked me the name of our church. As we walked along the street, she commented about the neighborhood and houses along our street. She liked both. It wasn’t surprising that she also commented on the trees. She loves them almost as much as she loves music. As we approached our house, I said, “I like this white house.” She didn’t give any indication that she knew it was our house. She said she liked it as well, especially the contrast of the white with the green of the shrubbery and trees. When we entered the house, she turned very naturally to her right to enter the bathroom off of our laundry room. She wasn’t confused about that.

A few minutes later, we went to dinner. When we returned, I watched the end of the Cowboys/Redskins game while she worked on her iPad. After a while, I pulled up a series of YouTube videos of The Three Tenors for Kate while I took a shower. She was taken with the music and put her iPad down. We watched together for another hour after I got out of the shower. Then we were off to bed. Except for the slow start, it was a good day.

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Miscellaneous Notes from Yesterday

For the second day in a row, Kate got up on her own, this time about 10:25. She didn’t shower, so we made it to Panera shortly after 11:00. She was in a very cheerful mood. On the way to Panera, she whispered, “Tell me your full name.” That is the first time I recall her whispering in the car. She does it periodically at home. I’m not sure why. I suspect it is because she either thinks we have guests in the house or that we are staying in someone else’s home.

At lunch, she said, “What’s the name of this restaurant?” I told her, “Applebee’s.” In the next few minutes she asked two other times. The last time she said, “I know I’ve asked you before. I should remember that.” I said, “That’s all right. You can ask as many times as you want.” Then she asked my name. I told her and reminded her we have been married 55 years. She said, “Do we have children?” I told her we do, and she asked their names. I am no longer surprised at these conversations. They happen every day. I am just happy that she is able to ask so naturally without being too self-conscious about it. That is so much better than those moments when she is completely disoriented and has an attack of anxiety.

Following the experience we had last night, we spent some time in the family room. When I was ready to take my shower, Kate told me she was getting tired and having a little trouble with her puzzles. I told her I would put on some music in our bedroom, and she could get ready for bed. I brought her a night gown and put it on the bed. She was unsure of what she should do and asked, “What do I do now?” I told her to take off her clothes and put on her gown. She was still confused. I walked her through each step. When we were finished, she said, “I am glad I have you. I know that if something goes wrong, I know you will take care of it.” I definitely feel appreciated. I know that some caregivers work faithfully and don’t hear words like that. That’s another reason to be grateful.

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Another Surreal Experience, A Moment to Treasure

If I didn’t already know that it’s possible to find joy in living with Alzheimer’s, I would be a believer now. Last night, Kate and I had the most incredible experience. It’s one I never would have imagined. Before going further, I should tell you that it can also be viewed through the lens of sadness, but it was pure joy for Kate. Because of that, it was a moment of joy for me as well, and it lasted more than an hour.

As we returned from dinner, Kate commented on a neighbor’s house. She said, “I remember that.” Our house is two doors down. I turned into our drive and parked in the garage. When Kate got out of the car, she looked at the trees at the back of the house and walked out of the garage to look more closely. She loves looking at the trees, ours and everyone else’s. Instead of turning around and heading toward the door from our garage to the laundry room, she turned toward the driveway back to the street. She suddenly realized she was going the wrong direction and said, “Where am I going?” I walked over to her. She pointed to our patio and said she just wanted to look around for a few minutes. She loved everything she saw. She commented on the patio itself, the arrangement of the furniture, the swimming pool, and the landscaping. It was as though this were the first time she had seen any of these things. In a minute, I suggested we go inside. She said, “Is it all right?” I told her it would be fine.

We spent the next hour going through every room in the house. As she had done outside, she commented on everything – the rooms themselves, the furniture (some of which I explained was from her parents home), the photos and artwork. She loved everything, even the laundry room that is pretty much like any ordinary room between the garage and kitchen. She was particularly struck by the family room. We walked around it for a while. Then she wanted to go into the living room. She was taken with a wedding picture of our daughter, Jesse, and her own wedding picture that was taken in her parents’ home. From there we entered the dining room. She loved seeing a portrait of her mother as a young girl and another of her grandfather on her mother’s side. We went through a door into the kitchen where she continued to be taken with everything she saw. In several rooms she commented about their not looking pretentious but representing a particular period. After leaving the kitchen, she wanted to go back to the living room, so we did. She apparently hadn’t remembered that we had just come from there. She expressed an equal measure of enthusiasm the second time around.

When we got to our bedroom and bath she said, “I would love to stay here tonight, but I know we can’t.” When I told her we could, she was thrilled. We continued to the other rooms. She loved each one. This was very similar to a surreal experience I mentioned a week or two ago. She mixed things that made sense with those that didn’t. There were times when it was clear that she remembered its being our house but not the one we are living in now, one that we had lived in sometime in the past. At other times, it appeared that she thought this was her family home. She specifically mentioned its meaning so much because it was a place that meant so much to her family.

Toward the end of our tour, she was very emotional. Tears welled up in her eyes as I’ve seen a number of times lately, in fact, just the previous night at Casa Bella. She said, “I am so glad we could experience this together.” I told her I felt the same way. She was so very confused, but she was also very happy.

When we finished, she wanted to relax in the family room. I put on some music, and she began to work on a puzzle on her iPad. It took her a little while to become fully focused on her puzzles. She kept looking around the room and commenting on things she liked.

As I said earlier, one could think of this experience as a sad one, and I understand that. How I wish she didn’t have this disease, but no one has figured a way to get around that. I am just grateful that we can share joyful moments like this one. We have many more good times than bad ones, but last night was very special for both of us. Living in her world really pays dividends.