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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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Sleep Again

After getting up very early (just before 7:45) two days ago, Kate slept late yesterday. I checked on her at 10:30. She was coming out of the bathroom. I thought she was going to get ready for the day, but she went back to bed. I checked on her again at 11:30. She was still in bed but resting. I asked her if she would like me to take her to lunch. She nodded and said, “I’ll need some clothes.” I told her I had put them on her chair. She was still groggy, but she got up. She skipped her shower, so we were able to get to lunch a little after 12:30.

We both had appointments for haircuts at 3:00. When we returned home, she picked up one of her family photo albums and looked through it for about thirty minutes. Then she lay down on the sofa and rested for almost an hour. I’m not sure, but I think she was actually asleep part of that time. She was tired after dinner but stayed up until about 8:30 when she called it quits for the day.

I continue to believe the change in her sleep pattern is a general sign of the other changes that she is experiencing. Over what is now seven years and nine months since her diagnosis, the changes have been very gradual. The past six months have been quite different. The fact that she asks so many questions about the names of our family members and where we are suggests that she is working hard to preserve whatever memory remains. It is hard. It is common for her to ask my name several times in succession and still not be able to repeat it. Over a day’s time, it must be very taxing for her.

I’m not making any predictions about the future, but I feel confident that we will make our trip to Texas for Thanksgiving with our son and his family. As for everything else, I intend for us to follow the same approach we’ve had from the beginning. We’ll take it a day at a time and enjoy every moment we can.

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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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A Good Experience with the Sitter

As you may recall, I have expressed some concern about Kate’s recent response to our sitters. My guess is that as her dependence on me has increased, she has felt less at ease when I leave her with a sitter. As with other behaviors this varies, and I am always glad to report the good experiences as well as those that fall short. Yesterday was a good one.

We arrived at Panera later than our normal time. I am not sure why I say “normal.” We haven’t had a normal time in several months now. We were early enough for Kate to have a muffin and then lunch before I had to leave for Rotary. Kate was in an especially cheerful mood, so I was hopeful that she might be more receptive to the sitter. I didn’t say anything about my leaving for Rotary until twenty minutes before Marilyn arrived. Kate’s only concern was Marilyn’s name. Several times before and once after she arrived, Kate asked me to repeat her name. She showed no concern other than that. I may have facilitated things when I set up the TV to play a series of videos of the Mormon Tabernacle Choir. Both Kate and Marilyn were interested in watching.

When I returned home, Kate was resting on the sofa in the family room. Marilyn was in a chair nearby. Everything appeared to go well. They had watched the choir for two hours before taking a break. I had left earlier with a good feeling and glad that nothing happened while I was gone to diminish it.

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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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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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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.