A Change in My Morning Routine

I’ve been pretty open about my following a predictable daily routine. That’s especially true in the morning when I have the most control. After that, I seek routine but always bend to the necessities of the day. I find that I bend a lot more with the progression of Kate’s Alzheimer’s. Her recent changes and the summer weather have made a difference.

As long as I can remember my first order of business has been to eat breakfast. During the past four or five years, I’ve added a daily walk of 2 to 2.5 miles right after breakfast. Over the past few weeks, that’s changed.

I was initially motivated by the weather. The morning temperatures and humidity have been a little warmer than I like, so I decided to walk a little earlier. I tried that, but it was still too warm by the time I reached the mid-point of my walk. That led to what I previously would have thought to be the unthinkable – walking before breakfast. It took me a week to get fully adjusted, but it is working now. That first week I was so accustomed to beginning my other daily activities when I got back from my walk that I forgot to eat breakfast three times. It was only a little later in the morning that I felt unusually hungry. I quickly realized the problem.

One morning I was hotter than usual when I got home from my walk. I decided to cool off in the pool. I was only in the pool about twenty minutes, but I found it a nice way to end a walk, so that has become my new normal. I’m not sure how long I will continue that. I suppose that will be when the water is colder than I like. That shouldn’t be too long. In the meantime, I am enjoying the new routine. I think it may have some therapeutic benefits as well. I’ll say more about that in another post.

With Kate sleeping later than usual, the added stress as she declines, and the increase in the number of desserts we are now eating, I’ve increased the length of my walks. Instead of 2 to 2.5 miles I have gradually increased that to a little over 4 miles. Yesterday it was 4.5 miles. Today it was 4.6 miles. I’m stopping there.

Apart from its stress-reduction value, it also gives me more time for reading (listening). That is especially helpful with longer books. Now I am listening to A Gentleman in Moscow. It would take me 16 days walking my shorter route. My new one will allow me to do it in 12. I should also add that I have dropped almost five pounds. For the past couple of months, I have been five pounds heavier than I like to be. Burning more calories really helps.

A Rare Event

It is 4:45 as I begin this post. We arrived home from lunch shortly after 2:00. I can’t remember the last time that Kate has wanted to stay at home this long. This is really unusual. Almost an hour ago, I asked if she wanted to go to Barnes & Noble. She indicated that she was comfortable working her puzzles here in the family room. I have had a variety of music playing since we got home. She has enjoyed that. If we stay at home much longer, we’ll probably just go directly to dinner. Ah, just as I was writing that last sentence, she asked if I was ready to go. I told her to give me a minute, and I would be ready. I think we’ll go to Panera. It is close to our house and to the Thai restaurant where I was planning to go for dinner.

I should add that Kate did get up a little earlier than yesterday and did so without my waking her. It was a little late for Panera. We went directly to lunch where we arrived shortly after 12:30.

Except for one bit of confusion, she has seemed fine today. Before leaving for lunch, she picked up her night gown from our bathroom and gave me an expression and hand signal that I didn’t understand. I now think she was asking if she should take it with us. I told her she could take it to her room. She looked confused and asked me where he room is. I walked her to our bedroom door and pointed down the hallway and told her to turn left and walk straight ahead. There could have been some confusion because I said “your room.” In the distant past, we referred to this as her office. It is furnished as a guest room but has a desk and printer for her computer. Now it is the room in which she usually gets dressed. Most of her clothes are in the closet of that room as well as a dresser that has her undergarments and socks.

As she often does, she asked me questions about names during lunch. At one point, she said, “I’ll probably have to ask you again.” That is something else that she frequently says. Then she said, “I wouldn’t want to live without you.” That has a lot more meaning for both of us now than in the past.

One thing she hasn’t forgotten is TCU. Quite a few members of her family have gone to school there including the two of us, our son, and a grandson. She has very strong feelings of loyalty to the university. She has always been able to call it by name without any hesitation. There aren’t many other things that I can say that about.

All in all, we’ve had a good day. I’m expecting a nice evening as well.

Back to Normal

After the pain of Friday night, we were back to our new normal routine yesterday. I say new normal since Kate is sleeping later somewhat more consistently now. It appears that the new pattern is to sleep late a couple of days in a row. Then she gets up at a normal time the next day. If that pattern holds, she will probably sleep late again this morning. I woke her around noon yesterday. We went directly to lunch, arriving about 1:30.

We came back home where we relaxed over an hour. I got out a three-ring binder with photos of our children and grandchildren as well as Kate’s brother and his wife. I had also included several pages of information about us. It included basic family information like Kate’s parents and grandparents, her brother and his wife, and our children and grandchildren. There is also a section to which I will continue to add information. Right now it includes our dating, engagement, wedding, and honeymoon. First, I’m going to revise what I have. I’m going to format the information as an outline rather than a narrative. That will be easier for her to comprehend. I also don’t want to overload her. I think having little snippets of information is better than trying to tell a more complete story. Kate was interested in what I had put together. That made me happy. I wasn’t sure what to expect.

When we finished with Kate’s Memory Book, I picked up her Big Sister Album that Ken made and gave to her in the spring. It’s 140 pages with multiple photos on each page. She went through the entire album. For Kate, it was just like seeing it for the first time. I am struck by the fact that there are a few pictures that she always singles out as especially good. She loves the picture of Ken and her on the cover. It was taken when they were 6 and 3. I think the album is especially important for her right now when she is beginning to lose so many of her memories.

When we finished, we had about an hour and a half before dinner. We went to Barnes & Noble. From there we went to dinner and back home. We relaxed a while in the family room before adjourning to our bedroom where we watched a portion of Sound of Music. She was feeling tired and got to bed at 9:30. I got in bed shortly thereafter.

Neither one of us said anything about the previous night. We were back to where we were. This is a good example of the pattern of changes that occur over time. There is never an abrupt end of one thing and a beginning of another. That is the way it has been with names. She sometimes forgets names but remembers them at other times. As time passes, the forgetting becomes more common. Most of the time, she no longer remembers the names of our children, but sometimes she does. She is forgetting my name more than in the past, I see that it won’t be long until my name and hers will be lost.

This gradual process helps me adapt. I am bothered by the first signs of new things that mark the progression of her disease. Then I begin to adapt. Then something else happens. I try not spend a lot of time worrying about it, but I do wonder what our lives will be like 3-6 months from now. I hope that we will be able to make a trip to Texas for Thanksgiving with Kevin and his family as well as to Virginia to be with Jesse and her family for Christmas. It is still too early for me to know if this will work out.

Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.

Latest Doctor’s Appointment and Opera Night

Kate’s getting up earlier helped to make the day go smoothly yesterday. We spent about an hour at Panera before going to lunch. Then we had just enough time to drop by the house to brush teeth before going a routine doctor’s appointment for Kate. This was an uneventful visit. Dr. Reynolds asked Kate how she was doing and if there were any special things she wanted to report. She didn’t have anything. That, of course, is not surprising. Even if she did, she probably would have been unable to remember it. I did mention that she had been sleeping later in the day but didn’t think we needed to do anything special to counteract that. I told him we had continued to keep up an active schedule. He asked that I drop the Ibuprophen I had been giving her. He doubted that the low dose I was giving her (one tablet in the morning and one at night) made any difference at all. I had also cut back on her acid reflux medication. He said it is best to continue as it was before.

From the doctor’s office we stopped by Barnes & Noble for an hour and a half. Then we came home and changed clothes before going to opera night at Casa Bella. I got Kate’s clothes for her. After I had changed, I went to check on her. She was wearing a pair of black pants I had given her but had not put on the top I picked out. I found it in the bathroom and brought it to her. She put it on. As she did so, I noticed that she had put the black pants on over the tan ones she had worn all day. I decided not to say anything. A few minutes later, I saw her going through a drawer in her bedside table. She took out a small plastic container that had several ball point pens. She also found a glove and put it in the tray as well. She took it with her to the car. We were off to Casa Bella.

As Kate started to get out of the car at the restaurant, I noticed that she was about to bring the pants she had brought to the car earlier in the day. I told her I thought she could just leave them in the car. She accepted that without a question. It has been a good while since she has expressed any reservation about following any suggestion I make. I feel this is further evidence of increasing sense of dependence on me to know what it best.

The evening went well. A new couple sat with us and the couple we always sit with. We had a good time getting acquainted. At one point, the wife asked Kate about her work. She said she was retired and had been a teacher. The husband asked her where she taught. She was stumped and said, “Around Tennessee.” I interjected and gave the names of the schools. The wife asked her what she taught. She was unsure what to say. Once again, I spoke up for her and said that she had been an English teacher and school librarian. The rest of the evening went smoothly. It had been another nice day.

An Interesting Experience while Donating Platelets

While the sitter was with Kate yesterday, I donated platelets. I’ve been donating platelets for about three years following many years of whole blood donations, so I am acquainted with most of the people who work in that section of the department, and they know me. That makes the donation time a bit of a social occasion as well. Yesterday I got a bonus.

About an hour after I had been there, a woman took the chair (lounge?) next to me. Since my last visit two weeks ago, they have added individual TVs at each chair. I decided to pick out a DVD of Seabiscuit to pass the time instead of reading. It turned out the person getting me hooked up couldn’t get the TV working. I put the DVD beside me on the chair. The woman noticed the title and said it’s a good movie.

That led to a very pleasant hour of conversation. Because she had asked about Seabiscuit, I asked if she was “into” horses. She answered affirmatively, and we were “off to the races.” I didn’t mean to imply that I know much about horses and the culture surrounding them. I know next to nothing. I recently read Motherhood: Lost and Found by Ann Campanella. That may seem like an unlikely book for me, but it is her story of being a caregiver to her aging parents at the same time she was trying unsuccessfully to have a baby. So where do horses fit in? Well, it turns out that she has a passion for horses. She weaves stories of her and her horse along with her own story about her mother’s Alzheimer’s. As you can see, and Kate would confirm, I digress. I just wanted to say that was the extent of my knowledge of the horse world.

While I don’t know anything about horses, I do enjoy learning about the variety of things to which people devote themselves. So it turns out this woman, Irene, I believe, has been involved with horses most of her adult life. I had one question after another, and she had one informative answer after another.
It turns out that she is a fox hunter though retired for two years. She opened up a whole new world. I knew nothing about fox hunting clubs, the procedures followed on a hunt, that the people who run the clubs know where the foxes live, and that the foxes become accustomed to being hunted, and especially that some clubs don’t even use foxes at all but the scent of a fox to attract the dogs. I asked some dumb questions like “Do you actually kill the fox?” They don’t. (You probably knew that.) I found the conversation to be fascinating.

Beyond her interest in horses and fox hunting, she has owned her own construction business. Most recently, she has been a subcontractor in the construction of a power plant. I was glad that the TV was not working. This conversation was much more interesting.

As I left, I couldn’t help thinking of my dad. He would have enjoyed this conversation himself. He, too, was fascinated by such things. I might add that my brother, Larry, has similarly broad interests. The Creighton boys are easily entertained.

Up Earlier Today

Just as I was about to think I would have to wake her again this morning, Kate walked into the family room dressed and ready for Panera. We arrived ten minutes ago, and she is well into her muffin. This should be about perfect timing for us to get to lunch around 11:45 and still leave us a little time before leaving for her doctor’s appointment at 2:00.

When she met me in the family room, she was carrying a pair of black pants, black socks, and an almost completely used roll of toilet paper. She brought all three with her to the car. She asked me to wait a minute before I back out of the garage. She was holding the toilet paper and said, “I want to put these on.” She had obviously thought the toilet paper was a pair of socks. With a puzzled look on her face, she put it down and picked up the black socks. She is wearing dark tan pants and shoes that are a light tan, almost yellow. I could tell she didn’t like the idea of wearing black socks and asked her if she would like me to get her another pair of socks. She said yes, and I went back in the house.

I came back with a pair of lightweight, beige socks that are a little heavier than hose. She approved. Teasing me, she said, “I didn’t think you could do it.” Teasing her, I said, “Aren’t you worried about hurting my ego?” She responded, “Your ego could use a little of that.” I get a kick out of her playfulness. She was never like this before Alzheimer’s. This kind of interaction has been beneficial to us in the past few years.

A Day of Names

Kate frequently asks me to tell her my name and the names of our children and grandchildren. Yesterday was different in that it occurred so much. I suspect if we hadn’t had a sitter in the afternoon she would have asked me more times. As we left for Panera yesterday, she said, “What is your name?” She asked again at Panera. She also asked, “Where are we?” That is something else that occurred more often than usual. I often answer, “Knoxville where we have lived for 47 years.” She always expresses surprise about the number of years. This happened several times yesterday. A few times were so close together that even I was surprised she had no recollection of how long we had lived here. She also asked me where she was born.

When we got into bed last night, she said, “Do we have children?” I said, “Yes.” She said, “Two.” She asked me to tell her their names. It was said as if she were testing me and not seeking information for herself. It was clear as we talked that she really couldn’t remember. In a few moments, she asked me to tell her the names of our children again. Then again in another few minutes. When I tell her, she almost always follows that by saying how proud we are of them.

She asks the names of our children far more than any other names. As I have noted before, I take that as a measure of a mother’s love. She loves them dearly and is trying to hold on to their names as Alzheimer’s ravages her brain.

Perhaps because she has slept late recently, she has been quite talkative once we got into bed the past two nights. Her conversation (as it does during the day) focuses on the things she can remember – her mother and father, our marriage, and our children. She finds comfort in talking about these things. She talks mostly about our marriage, about our being well-matched, about our being meant for each other, that she would marry me again if she could, and that we have been so fortunate. I share her feelings. It makes me think of my parents and her parents. It was the same with them.

I see the coming of a new morning routine.

Once again, I had to wake Kate this morning; however, it was a little easier to get her up than yesterday. Once again, to save time we went to Panera for lunch and got back just before the sitter arrived at 1:00.

Up until now, I have thought of her sleeping late as erratic. In fact, that’s what I said in the message to her doctor just yesterday. It now looks like we are in the process of a fundamental change in our normal routine. I have a feeling of regret about this. I feel for her as I know this signals a new stage of her disease.

I also feel for myself because it means reducing my own social contact. It’s been over two weeks since I saw one of my favorite acquaintances at Panera. For the past two or more years, he and his wife and Kate and I have shared a few moments of conversation almost every morning. He and I are quite different politically and religiously, but we both enjoy social contact and conversation. Both of us like to talk, but each gives the other a chance to speak. I miss him.

In some ways, I wish I had a sitter for the morning rather than the afternoon. The problem is that neither of our sitters is available for those hours. In other ways, it’s probably a good thing for me to have a block of time to myself. There are household responsibilities that I could take care of. I know I won’t have any problem finding productive ways to occupy my time. As time goes by, I might very well see that simply relaxing would be a productive way to take care of myself. Of course, I will also increase our in-home care. When that happens, I will be freer to get out.