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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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Increasing Dependence

I suspect becoming dependent on others is something most of us want to avoid. I find this is true among most of the seniors I know. Yet there is a certain inevitability if we live long enough. Alzheimer’s has been the big factor in Kate’s dependence on me. She got along reasonably well until she stopped driving. Since that occurred following an accident, she never fought losing her car. She was bothered, however, by her dependence on me to get her from place to place. Even though she was getting out, I think she felt tethered to the house. That may account for why she still doesn’t like to stay around the house for extended periods of time. She likes to be out, and I have enabled her to do that.

Of course, there are some things we are glad to let others do for us. Kate has never shown any concern about my taking care of meals or the laundry. Neither has she been bothered my role in giving instructions to our housekeeper. One surprising area in which she has not asserted her independence is shopping for clothes. I can’t remember the last time she expressed an interest or need to buy new clothes. At first, I would initiate a shopping trip. She found it confusing to look through so many different options. Sometimes she bought things that she never wore. Gradually, I started shopping without her. Now I buy everything online. It is easier for me. The only problem I’ve had is getting the right fit. It seems we have settled into the right sizes. That is working well.

I think that retaining independence is even more important when it comes to the many everyday tasks in which we are involved. That is especially true for those of a personal nature like getting dressed, bathing, and using the toilet. Kate has often asserted her independence in these areas. For a long time she resisted taking my hand when going up or down stairs or curbs or getting in and out of the car. Now she is inconsistent. Sometimes she welcomes my hand. Often she asks for it. I am accustomed to her saying, “Hand” as we approach a curb.

Right now we are going through a transition to her becoming substantially more dependent. Until the past six months or so, she has resisted my involvement with her clothes. By that I mean selecting or helping her select what she wears. We are now coming close to my picking out everything she wears. She seems to appreciate this. I think it’s a little like shopping. There are so many options that she gets confused.

The latest change that has occurred in the past week or ten days is her asking for and/or accepting my help with dressing. It is only in the past few days that she has asked my help fastening her bra. That looks like something I will be doing a lot of from here on out. For weeks or months, she has asked my help in determining which is the front and which is the back of her pants. Now she is asking me to help putting them on. The same is true for her tops, and yesterday, she gave me her socks to put on for her.

She has always been a little slow to wake up in the morning. That is even truer now. She often seems very confused. This morning I checked on her and discovered that she was awake but still in bed. I asked if she wanted to rest a little more or get up. She wanted to get up. She looked like she didn’t know what to do. I suggested she take her shower. She asked where. I told her in our bathroom. Again, she asked where. I pointed to it. Then she asked me to help her up. Once she was up she took my hand and wanted me to walk her to the bathroom. When we got to the bathroom, she said, “What now?” I told her to take off her gown, and I would start the shower.

At moments like these, she is almost completely dependent, but once she got in the shower, she got along all right. I should say until she got out. Then she wanted my help getting dressed. She still has some ambivalence about my help. Sometimes she will say, “I don’t really need your help, but I feel more comfortable (with it).” She often says the same thing when taking my hand going up and down curbs. As you can tell, we are entering a new stage that is different for both of us. We are both adapting.

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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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A Nice Day, But More Confusion

Right after we sat down for lunch yesterday, Kate said, “Who are you?” I told her, and she asked, “What’s my name?” Then she asked, “Are we related?” I said, “Yes, we’re married.” She looked at me in disbelief and said, “Married?” This led into questions about children. When I mentioned our having a daughter, she was equally shocked. She looked so puzzled that I was afraid to say too much. I thought that might be more disturbing than helpful. Most of the time we have this kind of conversation she simply accepts what I say. This was one of several times she seemed disturbed about not remembering.

We returned to the house after lunch. We had about an hour before her appointment for a massage. I thought she might work on her iPad during that time, but she was tired. She sat down in a chair with her iPad but immediately closed her eyes and went to sleep. That is something else that is not typical. She often rests but rarely goes to sleep, especially sitting in a chair. She usually moves to our sofa or to our bed.

We came back to the house after her massage. As we turned on to the road leading to our neighborhood, she said, “I used to live around here.” When we approached our house, she pointed to it. I said, “Does that look familiar?” She said, “Our house.” She said this in a way that made me think she knew it is where we live now. I pulled into the garage, and she saw her collection of Dr. Pepper signs and knick knacks. She said, “Oh, I remember these. I think I used to live here.” Once we were inside, she commented on the family room and said something about having lived here in the past. I told her it was where we live right now. She expressed some surprise but not the kind of disbelief she had shown in our lunch conversation.

I gave the iPad to her, and she took a seat in the family room. Instead of working on her iPad, she picked up her Big Sister photo book. She spent about ten minutes looking at it when she received a phone call from Meg Wright, a longtime friend from Dallas. She was a bridesmaid in our wedding. I had shown Kate the picture just before she called. That turned out to be a good opening for their conversation. She handled herself beautifully. She was very natural. If I hadn’t known better, I would have thought she was perfectly normal.

When she ended her phone call, she picked up the photo book again and spent another twenty minutes going through it. I have heard other people talk about the value of a memory book, but I am getting a better appreciation now. Going through multiple photographs of various family members jars her memory in a way that is much more powerful than my telling her about her father, mother and other members of her family. Once again, it reinforces the impact that her intuitive qualities have. I saw no sign of puzzlement as she leafed through the pages. She continues to identify specific pictures that she especially likes. They aren’t random choices. She keeps noting the same ones. She really connects with them.

We topped off the day with dinner at Casa Bella. This is the second week they are featuring music from Les Miserables. Since we had attended a performance last week, we ate in a separate dining room than where the music performed. We had a good meal, but I did find it sad that she is completely forgetting all of our memories of the years we have eaten there. She asked me the name of the restaurant, but the look on her face told me there was no recognition. During the meal, however, she did say, “I remember being here before.” When she asked about dessert, I told her we were going to have the Amaretto cheesecake. We’ve eaten this dessert 90% of the times we eaten there. She didn’t recall it, but she did love it.

When we got home, she picked up her iPad and took a seat in the family room. She continued working on it for over an hour before I told her it was time to get ready for bed. Earlier she had said she was very tired and wanted to get to bed early; however, she was so engaged with her puzzles that there is no telling how long she would have continued.

I got her a night gown and told her it was time to put it on. She took it and went to the bathroom next to our bedroom. I was working on this blog post when I realized it had been a while since she had left the room. I called to her. She responded but I didn’t see her. The lights were on in the bathroom and the room where she keeps her clothes. It was dark in the guest room. That’s where I found her. She was in bed under the covers wearing her clothes including her shoes and socks . Her gown was beside her on the bed. I told her I would like to have her join me in our bedroom. She got up, and we walked through the guest bath to the hallway to our room. She said, “I’ll follow you.” At that point, we were about 10-12 feet from the doorway to our bedroom. Even that close, she was unable to recognize where she was.

Once in the bedroom, I told her step by step what to do. She did, however, put on her gown without my help. She is sometimes unable to do that. That reminds me that this morning was the first time she has asked me to fasten her bra. I have been amazed that she has been able to do that until now. After putting on her gown, she went right to bed. She was worn out. I joined her in another fifteen minutes. She was asleep then. I hope that will make it easier for her to get up this morning.

As I say so often, it was a nice day; however, her confusion seems to get worse almost every day. She is fading away faster and faster, something I wish I could stop. I’m quite familiar with the last stage of this journey, but I don’t think there is a way to adequately prepare for it.

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Adapting to Changes in our Morning Routine: Part 2

Those who know me well understand that I don’t like change. I do, however, grasp that change occurs whether we like it or not, and the question is how to successfully adapt to it. Living with Alzheimer’s demands a lot of change. When I first noticed that Kate was sleeping late in the morning, I tried to determine why. What I really wanted was to be able to control it so that it didn’t impact our whole morning. I didn’t want a whole morning to myself.

That led me to do several things. The first was to consult her doctor. He suggested eliminating Trazadone from her daily meds. That resulted in her sleeping less time in a 24-hour period; however, it meant she went to bed a little later. Her pattern that had been so regular for years was disrupted.

Along with that has been a change in my whole morning routine. I was most concerned about her getting up early enough on the days we have a sitter. I wanted time for us to have lunch together before the sitter arrived. The other concern involved what time we eat lunch on the days we don’t have a sitter. We have eaten as late at 2:30 a number of times. Since I eat an early breakfast, I am ready to eat as early as 11:30 though eating between 11:30 and 12:30 works fine.

These two concerns led me to focus on getting her up earlier, not to get to Panera at the time we had been going but to be ready for lunch around noon. That meant that I let her sleep until 10:00 or 11:00 before attempting to wake her. Most of the time that gave her enough time to prevent her feeling rushed. Over the past week, it has been more difficult for her to get up.

Yesterday I tried something different. It was a day for the sitter to come at 1:00. At 10:15, I put on some music to gently wake her. About 15 minutes later, I checked on her. She was still in bed but awake. I asked if she would like me to take her to lunch. She said she would. I told her I had put her clothes out and the bathroom was already for her to shower. Then I left to give her a little time. When I returned thirty minutes later, she was sleeping soundly. I decided not to push her and try a little later even if it meant that the sitter took her to lunch. At noon, I checked again. She was awake but still in bed. I told her that this was a day for me to go to the Y and that Mary would be coming to stay with her. I asked if she would like to go to lunch. Again, she said yes.

After she was up and still having trouble getting going, I decided that I could ask Mary to meet us at Panera. I’ve done that a number of times before. As it turned out, we got to Panera only a few minutes before Mary, so I ate lunch with the two of them. When I finished, I left for the Y. I found that worked well and am prepared to do that on a regular basis if needed. It takes a load off me. I don’t have to be as concerned about waking her. It also allows Kate to do what she wants – sleep and take her time getting ready.

When I got home, Kate was resting on the sofa. Mary said they had stayed at Panera for a while before Kate wanted to come home. I gathered Kate had been resting a good bit of the time I was gone. That is another of my concerns. She seems to be using the time with the sitter to sleep. It’s hard for the sitter to control that, and that might easily explain something else that is happening.

Every change brings about responses that lead to other changes. My concern now is letting her sleep so much during the day that she can’t sleep at night. Until the last few days, that has not been an issue. During the past three nights, however, she has gone to bed early but was still awake an hour or two later. I want to avoid that’s becoming a pattern.

So, where does that leave me? The ideal resolution of the problem for me would be to wake her up at an earlier time. That should help her get to sleep more easily. I think I will try that for a few days and see how she responds. It seems worth a try. I may also be able to take advantage of those few times she gets up on her own. She did that a few minutes ago. She’s in the shower, and its only 10:10. That’s not a bad start.

Looking ahead, I believe that I will engage a sitter for at least a couple of mornings a week. I am not ready to do that just yet. Kate is just beginning to require help getting dressed, and I am not sure she would like someone new helping her. One thing is for sure. The changes are not going to stop. I will need to adapt.

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Kate’s Humor

Although Kate appreciates humor, she has never been one to joke or kid with people. It has only been in the latter stages of her Alzheimer’s that she has taken an interest in kidding me. I often think of kidding as an “art.” Not literally, of course. What I mean is that it requires the kidder to have a sense of when and when not to kid, who and who not to kid, and the way to kid. That is something Kate hasn’t mastered. What has happened is that she has lost her ability to filter what she says. Fortunately, I am the only one she kids, and I understand that she never means to hurt me. She is trying to be playful in the same way that I have been with her.

That does lead to her kidding me in a way that an observer would interpret as sometimes “mean-spirited.” That is especially true in her comments about our last name as well as my looks. One example that comes up frequently is when she asks my name. If I only give her my first name, she asks for my full name. When I tell her, she gives me a painful look when I say Creighton. She has a strong preference for her maiden name, Franklin, and says something like, “What was I thinking about?” Sometimes she says, “Richard Lee sounds all right, but Creighton?”

It is much more common for her to say something about my looks. Yesterday at lunch, she said, “You know, you’re a nice guy. You’re not handsome, but you’re nice.” She got more specific and mentioned my nose and receding hairline. About that time, a man in a hat walked by our table. I told Kate that maybe I should wear a hat. She said, “That won’t help. If it weren’t for your personality, you would still be living off your parents.” Should I have counted that as a victory?

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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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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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Adapting to Changes in Our Morning Routine

For most of my life I have been an early riser. I simply like being up early. As an adult, that has meant getting up, exercising, and going to work. After I retired, I continued getting up between 5:00 and 6:00. Over the past few years, I have made a number of adjustments to my morning routine. For a while after retirement, I dropped by the office for a couple of hours. Gradually, I stopped that to spend more time with Kate in the morning. I continued going to the Y three days a week and started walking the other four days. Over a year ago, I began to feel less comfortable leaving Kate by herself. That ultimately led to my engaging a sitter three afternoons a week. I started going to the Y during that time rather than in the morning. Until recently, I felt all right about leaving her early in the morning to take a morning walk.

Two things occurred that caused me to change again. The first, and to me more serious one, was Kate’s experience of an early morning anxiety attack. This was one of those times when she was upset at not knowing where she was or who she is. I was worried about her having another attack and my not being here to comfort and calm her. Simultaneously, I had a pinched nerve in my hip. This occurred when I stepped up my walking from 2.5-3.0 miles each morning to 3.0-4.5 miles. I decided I should take a break from both the Y and my morning walk.

One of the consequences of this change has been a reduction in my “reading” (actually listening) time. I have missed that as much as the exercise itself. I have always found it much easier to listen while walking or on the stationary bike or treadmill at the Y than simply sitting in a chair at home. I seem to be more distracted at home. I decided to try it anyway. I started listening 30 minutes each day. It didn’t feel right, but I discovered that it worked much better if I closed my eyes.

The hip is better now, but I still don’t want to leave Kate. Over the past few days, I’ve walked in a circle that takes me from our kitchen, family room, living room, dining room and back to the kitchen. I walk for 30-40 minutes while listening to a book. This is not the best arrangement. It is clearly a compromise, but it seems to be a good way to gradually get back into walking and listening. It is definitely not a long-term plan.

An additional issue is that the reduced exercise and reading have been an important part of my effort to minimize stress. That has been unfortunate in that it has occurred at the same time Kate is declining more rapidly. On top of that, Kate’s sleeping later in the morning means we are not as regular in making our morning trips to Panera. We are beginning to lose touch with that community of friends whom I have always recognized as helpful stress relievers. That, in turn, means I feel more stress than I have before. I am looking at other possibilities to right the ship. I’ll address that in another post.

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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.