So how am I feeling?

I often think that readers can tell how I am feeling simply by reading my posts, but periodically I feel I should be more direct. Sometimes, I think it really is obvious. Last week was a particularly good week for us. I was very upbeat. This week is different. It isn’t because Kate has not been in a good humor. She has. I think it is her sleeping so late that is bothering me. Today is the third day this week that I have had to wake her. One of those days I got her up so that we could get to lunch and get to an appointment with an orthopedist. Today, I needed to get her up so that we could have lunch before the sitter arrives at 1:00. I waited until 11:00. She was sleeping soundly, but she got up without a fuss. In the early years after her diagnosis, she would not have gotten up so quickly or cooperatively. That changed about 6-12 months ago. I see it as part of a pattern of changes that involve accepting what I tell her.

I often encourage people to recognize the differences from one individual to another. We’re not all alike, but I think the experiences of two friends have had an influence on me. One of those was a former roommate, Charlie Hardwick, with whom Kate and I visited last fall in Dallas. He, too, had dementia. I had been in periodic communication with his wife, Nancy, also a college friend at TCU. Based on what she had said about her husband, I thought he was a little ahead of Kate in the progression of the disease. A few weeks after we had been together, he died. Nancy told me that a short time after our visit, he started sleeping more, and then just went down hill. I was shocked at how rapidly he had declined.

I have another friend whose wife died about five months after I last saw her. I had been keeping up with her husband for several years. I also knew that she was further along in her dementia than Kate, but I never imagined that she would be gone so quickly.

These two situations have sensitized me to the fact that people can can decline quickly. That has caused me to observe Kate even more closely; therefore, the change in her sleep pattern has been of more concern than just my wanting her to get up so that we can have lunch together.

Intellectually, I recognize that what happened to our two friends doesn’t mean Kate will experience the same fate. It is very likely that she has a good bit of time ahead of her. On the other hand, I know that it is also possible that she won’t.

One other thing may account for my melancholy outlook relates to her increasing dependence on me. She appears to be at ease with that. In the past, she has been more insistent on doing things for herself. She is also more cooperative about everything. As I’ve noted in previous posts, this makes life easier for me. The downside is that it makes me sad to see her lose her independence.

An hour ago, I returned home to relieve the sitter. Kate was sound asleep on the sofa. Mary said she said she felt like resting and had been asleep about thirty minutes. That gave me a chance to talk briefly with Mary. It was interesting to hear her talk about Kate. She mentioned how sweet she is. She also told me that they had driven by the high school our children had attended and mentioned it to Mary. It is clear that there are lots of things that she sometimes remembers. I am sure the sight of the school served as the trigger for her to remember that our children went there.

After Mary left, I let her continue to sleep. She slept another twenty minutes before getting up. When she came into the kitchen, she was carrying her cup and iPad. She was ready for Panera. We’ve been here about twenty minutes and will leave for dinner shortly. Because of how long she slept last night and the nap she had this afternoon, I should expect her to be wide awake at bedtime. If she isn’t, that will probably add fuel to my fear that she is entering a period in which she requires more sleep than in the past. I hope not.

Lest my children, who may be reading this, begin to worry about me, I feel compelled to say this. Despite this moment of sadness, I am still getting along well. In this blog I try to convey what our lives are like as we live with Alzheimer’s. Most of our experiences have been good ones. Those experiences are not over. Most other moments will be more uplifting than this one. I believe, however, that I should let you know about the more difficult times. I wouldn’t want anyone to think we have skirted around the challenges. We have those, but, for the most part, we have been able to live full and fulfilling lives throughout this journey. I continue to be very grateful.

I think Kate’s trying to mimic me.

If you are a regular reader of this blog or someone who knows me well, you are aware that I have a few OCD tendencies (well, maybe more than a few). Kate has never been this way at all. Alzheimer’s has made our differences even more pronounced. Recently, it has come as a surprise to see her exhibiting some of my characteristics. After a long period of time during which she didn’t put up her clothes, she started doing so. She doesn’t always do this immediately after taking them off, but she no longer lets them accumulate on the beds, furniture, and floor as she did in the earlier stages.

The next behavior involves making up the bed. Over the course of our marriage, I recall hearing her say that her mother had taught her to make up the bed right after she gets up. This is something she has always done and continued for the first few years after her diagnosis. Gradually, however, she got out of the habit. Over the past few months, she has started again. She didn’t do it immediately and not nearly as well as she did before, but she was making a good stab at it. Within the past week, I have noticed that she takes more time and is doing a much better job. I’ve even noticed her looking over what she has done and doing a little straightening where she thinks it is needed.

What has been more surprising is her cleaning up at Panera. Their drink dispensers can be a little tricky. It is challenging to fill your cup without some of the drink dripping down the side of the cup and often spilling on to the counter. When this happens, she has started getting a napkin or two and wiping the entire counter, and she does it with as much care as she can. That’s not something she would have done before. In addition, crumbs always fall from her muffin to the table. When we are ready to leave, she has become very careful about getting up each and every crumb.

One final behavior involves a white board on our island. I got it a few years ago to let her know what day it is, appointments we have that day, and where I was if I were not at home. Over time, she stopped reading what I was writing, so I just put the day and date. I finally got tired of that, especially because I could not tell that she was reading it. I bought a digital clock with very large print that provides the same information and the time as well. It sits on the counter across from the island. Now the white board has a single purpose. That is where I put her morning medications. I use that because she can see them easily against the white background.

That was a lengthy introduction for what is a very short story. The other day when she was taking her medicine, she turned the white board at an angle. Then she said, “I keep changing this, and someone else changes it back.” To the best of my knowledge, that is the first time this has occurred, but what struck me was her desire to have it in arranged in a particular way. That seemed to be totally out of character. On reflection, I do recall that she has always had particular arrangements for the knick knacks on furniture or book shelves. Maybe she is just treating the white board in the same way. It’s a Knick Knack on the island. If so, that would make it a normal behavior for her. At any rate, I am leaving it at an angle just the way she arranged it.

Live Performances and Social Occasions

As noted in my previous post, we were at Casa Bella for Opera Thursday the other night. Once again, we had a great evening. The program and the singers were especially especially talented. For me, the most important thing is that Kate thoroughly enjoyed it. I haven’t seen any signs that her love for live performances has lessened in the least. On the contrary, it seems to be one of the highlights of her life.

It was a good social occasion as well. By now, our connections with others who are in attendance as well as the servers and, especially, the couple with whom we share a table each time make for a good evening. Kate is not talkative at occasions like this. I think it can be challenging for her because of the number of people who are talking. Sometimes it calls for a little patience as well as assertiveness. The other night, for the first time, she became frustrated and displayed it.

Like most of those in attendance, Kate and I arrive about an hour before the musical program begins. That gives us time to have our meal and enjoy greeting others as they arrive. One of the other guests came to our table to speak to the couple we sit with. We got into a conversation about someone else who has just had heart surgery. When he walked away, the man and woman with whom we sit continued to talk about the man who had had surgery. Kate couldn’t understand what we were talking about but must have recognized it was serious. She tried to get us to explain, but the man and the woman at our table were both talking simultaneously. It really was hard to focus on just one. Kate shouted, “What’s going on. I don’t know what you’re talking about.” With all the conversation going on at other tables, no one else is likely to have heard her, just the couple we sit with. They couldn’t have missed it.

This is only third time that I can recall her doing anything like this. The two other occasions were with good friends and occurred about two or three years ago. In each case, our friends thought her response was more shocking than I did. They were both correct that her behavior was out of character for her. I would say her response at Casa Bella was stronger than the other two times. In this case, I think it arose because of the level of frustration she experienced when she couldn’t understand what we were talking about. I’m sure she could tell it was something serious and may have felt shut out of the conversation. The good thing is that after her remark, she was just fine, and we continued to enjoy the evening as though nothing had happened. Like so many other things, it does make me wonder if I am going to see more of this kind of reaction in the future.

Another Marker

Even prior to her diagnosis, Kate was geographically challenged. In the years since her diagnosis, she has wanted me to walk in front of her to lead the way to when we get out of the car to go to a restaurant or when we are in a place with which she is not familiar. This can be dangerous. A number of times she hasn’t seen me make a turn and continued walking straight ahead.  I have to keep looking behind me to see if she is still there. She often says, “I’ll follow you.” In fact, she did that as we left Casa Bella last night. That was no surprise. What would have been surprising is if she had remembered where we had parked.

The surprise came when we got home. When we walked into the laundry room from the garage, she said, “I’ll follow you.” That is the first time she has ever felt the need to say that in our own home. I suspect she didn’t immediately recognize that she was home. Once she was further inside, she knew where she was. Until now, she has seemed to be very sure of herself getting around the house. She seems not to have a problem when she gets up to go to the bathroom early in the morning before daylight. She always seems to know how to get from room to room around the house even though she has some difficulty remembering where things are in a given room. That involves a little searching. This experience may seem a little thing, but I see it as another marker on our journey.

I found this disturbing because it comes amidst other noticeable changes that have occurred in recent months, all in the first three months of the year. I recognize that we have been very lucky in terms of the gradual progression of Kate’s Alzheimer’s, but it is still jarring to think that we are approaching the next stage of the disease. It’s the one that everyone most wants to avoid. We all know that day is coming, but we like to believe it won’t be soon. Of course we don’t know when that will occur. I don’t know either, but I do know the symptoms I am observing are significantly different from those of the past. It makes me sad. Not only that, I feel a certain measure of anxiety. Intellectually, I know that we will continue to enjoy life and each other to the extent that we are able. From an emotional standpoint, I am a bit uneasy.

That might account for the fact that the past two nights I woke up between 2:00 and 4:00 and had trouble getting back to sleep. I am sure my experience last night is one with which many caregivers can identify. When I woke up, I immediately started thinking about my various responsibilities involving Kate. It occurred to me that I hadn’t charged her iPad after she went to bed. I got up and went over to her side of the bed to find it. With only the night light from our bathroom, it was difficult to see. I got my phone and turned on the flashlight. I didn’t see it beside the bed. Then I started looking on the floor around her chair and the night table. In the fall, I bought a new iPad for myself, I have been letting her use it when hers needs charging. I decided to give up the search. In the morning, she could use mine. While searching for the iPad, I saw the pants and the shoes she had worn to Casa Bella last night. I had also neglected to put them away before going to bed. I keep them in my closet so that she doesn’t get them for everyday wear. That’s how I try to insure that she always has something clean to wear for somewhat dressier occasions. Those things taken care of, I went back to bed.

Her sleep pattern keeps changing

For years, Kate has had a pretty predictable pattern of sleep. At least that is true since she started taking Trazadone. That was shortly after her diagnosis just over seven years ago. She used to go to bed between 9:00 and 10:00. She would wake up around 7:00 or 8:00 and get some juice and yogurt. Then she returned to bed and worked jigsaw puzzles. She would get tired and fall asleep for a little while and get up for good between 8:30 and 9:30.

Early this year, she gave up the juice and yogurt routine as well as going back to bed. Her morning routine was rather stable until she got the flu. It wasn’t long after that when she had a lingering cold. I think that upset her sleep pattern. Since then, there have been several times when she has slept close to noon. I woke her up one day about 12:20.

Until this morning, I thought she might be working her way back to a regular pattern. I woke her at 12:25. I’m not entirely surprised. Last night she didn’t get into bed until after 10:00. Once she was in bed, she was talkative. She was talking about how fortunate we are. As she and I often do, she talked about our marriage, our children, grandchildren, and her extended family. I suspected she might sleep a little later today. I just didn’t anticipate how late.

That’s not an unfortunate thing for me. I got in my morning walk and took care of a variety household responsibilities that I have been putting off for a while. Being a creature of habit, I’m just thrown off a bit when I can’t be sure when she will be up. One of the ways I have adjusted is not to schedule anything during the morning. That works well. It certainly did this morning. I’m glad I didn’t have to rush her. Next week we are going to Memphis to spend a couple of days with our daughter and her family. I decided to make it a very leisurely trip by stopping overnight in Nashville. That afternoon we will visit Kate’s friend, Ellen, who is still in rehab after a bad fall. The next day we will have a leisurely drive to Memphis.

Some things are more of a challenge. Two weeks from today, I have a routine doctor’s appointment. I am scheduled for my labs the day before. Because I’m not supposed to eat breakfast before hand, I try to schedule the earliest appointment of the day. That’s not a time when I have a sitter, and I don’t want to get Kate up early enough for us to make an 8:00 appointment. I have scheduled this one for 10:30 and hope that I won’t have any problem getting Kate ready. If it is a normal day, that should be no problem. If it’s a day like today, I may have a challenge on my hands.

A Different Kind of Day

Our lives follow a pretty predictable routine. That is largely because I am a creature of habit. I have also tried to create a clear structure for Kate, and it seems to have worked. Not today though. As I noted in my previous post she has a cold. Yesterday and the day before, she awoke much earlier than normal and did not rest during the day. Today she made up for her lack of sleep. I decided to let her sleep as long as she could since we had no obligations to be anywhere or do anything on a set time. To my surprise, she didn’t wake up until 12:45. It was a little late to go to Panera for her muffin. We went directly to lunch, arriving at almost 2:00.

She wasn’t in the best of moods, and I tried not to do or say anything to aggravate her. My big mistake occurred when she blew her nose on her jacket that she has only worn two or three times. I quickly said, “Don’t do that.” I told her I would get her a paper towel. I normally keep them in the car, but we had run out the day before. She snapped back at me. Then she apologized, and I, too, felt bad and apologized.

After lunch, I asked her if she would like to go back home. She said, “Barnes & Noble.” After we had been there about 45 minutes, she said she had a headache. I asked if she would like to go home. She did. When we got home, I gave her a Tylenol. We brushed our teeth. Then she grabbed her cup and said, “I’ll see you” and walked to the front of the house. When I got to the kitchen, I didn’t see her. I looked in the garage and saw her sitting in the car waiting for me. Nothing at all had been said about our going back to Barnes & Noble, but she was obviously ready. I got in the car, and here we are again. We had only been home a few minutes.

While we were in the car, she said something about my controlling everything – “When we go, where we go, what we do.” I said, “I guess I really do control a lot of things, but I hope I do it with the intention of doing what you want to do.” She said, “That’s true. I know you do it for me.”

I see that it is now almost 5:15. If I follow our usual schedule, it will be time for dinner in 45 minutes or so. I will probably delay that a little tonight since we ate lunch so late. Yes, it’s a different kind of day.

Postscript

Kate surprised me when she decided she was ready to leave Barnes & Nobel shortly after I wrote the post above. Although we had eaten a late lunch, we talked about whether to go home or to eat. We decided to eat but to have a light meal. We went to the Bluefish Grill where we shared an appetizer and an entrée. As we entered the dining room, we saw one of my Rotarian friends. As we were eating, some friends stopped by our table on their way out. We also saw a couple from our church. We had a good meal and a nice social experience as well.

When our server asked if we wanted dessert, I said, “I don’t think so.” Kate looked at me and said, “We could share something.” I agreed. This happens occasionally when I don’t want a dessert. I had picked up a couple of pounds over the past week when our son was here. I really didn’t need anything more; however, I often imagine how I might some day look back on moments like this. I think I would say, “I wish I had just enjoyed the moment rather than worrying about my weight.” I continue to believe that is the right thing to do.

On the way home, Kate said, “I never get tired of being with you.” She followed that with “Sometimes I get irritated with you.” I said, “Thank you for loving me.” She closed the conversation with this comment. “I do love you. I don’t know why, but I do.” The day is ending on a high note as it always does.

Reflecting on Changes in Our Lives

I have repeatedly commented how fortunate Kate and I have been as we have been learning to live with Alzheimer’s, and that is true. We have been free of any other major health concerns. We have traveled. We visit with friends. We attend many live theater productions as well as a variety of musical events.  We are active and enjoying ourselves. That doesn’t mean, however, that life is the same as it was before Kate’s Alzheimer’s. In an earlier post, I described how much life has changed for Kate. Except for the things I arrange for her, she only works on her iPad and sometimes works in the yard. Let me take a moment to comment on the changes I have experienced.

At the time of Kate’s diagnosis, I was still working and also served as a volunteer with several organizations like our local United Way, our church, and the foundation board of our largest hospital system. Kate’s Alzheimer’s led to my retiring earlier than I would have. My term on the foundation board expired. I dropped one of the United Way committees on which I served. I gave up my Sunday school class and all but one church committee. We were regulars at church for many years. We are much less frequent attenders now. That relates to how slowly Kate likes to get going in the morning. For a short time, I signed us up to participate in the Shepherd’s Center’s programs. Kate enjoyed some of the classes, but I have found the mornings are not a good time to rush. It is much better to let her sleep as long as she wants, take as long as she needs to get dressed, and to spend time relaxing and enjoying her blueberry muffin at Panera.

I changed my exercise schedule at the Y from early in the morning to early afternoon. I have assumed almost all of the household responsibilities but should acknowledge that we have a housekeeper who comes to our house once a week, so not everything is on my shoulders.

Travel, especially international trips, had been a significant part of our lives. Our last big trip was to Switzerland in May 2015. Our two favorite places in the U.S. have been Chautauqua, NY and New York City. Our last trip to New York was in June 2015 with our daughter and son and three of their boys. We continued to attend Chautauqua through last summer, our thirteenth time there. For the first time in quite a while, we will not be there this summer and never again together.

There are a variety of evening activities in which we participated as couples but were primarily for my enjoyment. These include the symphony concerts and meetings of our music club, and a small group of people with a special interest in the symphony who get together with the conductor during the week prior to each concert. We’ve given up all evening events except the music nights at Casa Bella. We are able to attend those because they begin at 6:00 and end before 8:30. Periodically, we are invited to something at night, and I decline. Both of us enjoyed attending movies, but Kate’s interest has all but disappeared.

The good thing is that we are out and about a good portion of every day. That consists largely of a portion of the morning at Panera, lunch, some time at Barnes & Noble or another visit to Panera, and dinner. The most positive aspect of this schedule is that we have a good bit of social interaction throughout the day. Even when we are not in conversation, Kate often sees children being children. She loves watching them. Thus, we have changed our routine a good bit since her diagnosis, but we are still able to be socially engaged, just in a different way than before. We still enjoy doing things together. That’s hard to beat right now, but I know the most difficult part is on the way. We are approaching it little by little.

A Small Thing, But Another Marker on our Journey

Several years ago, I bought a white board for Kate. I put it on the island in our kitchen where she would see it each day. Each morning, I wrote the day of the week, the date, and a list of things on our schedule for that day. Over the past year, I gave up writing the schedule because Kate was not reading it; however, I have been dutifully writing the day of the week and the date each morning when I went to the kitchen for my breakfast. For at least six months, It looked like Kate did not pay attention to it, but I kept it up. Today I finally broke down and put the white board away. At this point, she seems to have little interest in this information. In case I am wrong, I bought a large digital clock that gives the time, day, and date. At least I won’t have to erase the old and write the new information each day. It will also be easier to read.

I’ve noticed a couple of other new things. One is that she is beginning to dislike whatever drink she gets, even her Dr. Pepper. For a several months, she has been mixing a little of each of the non-soft drink items (at least two types of lemonade, sweet and unsweetened tea, and two flavored teas) and being unhappy with them. She has started asking me to refill her cup. I have been getting her either an Arnold Palmer or a half and half mixture of sweet and unsweetened tea. She hasn’t like those either. In two different restaurants today, she didn’t drink her Dr. Pepper because it didn’t taste right to her. I tasted it. It tasted the way it usually does.

Tonight she worked a few minutes to figure out how to put on her robe. She finally gave up and asked me to do it for her. This is one of those occasions when she was happy to have me do something for her.

More Forgetting and Confusion

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

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

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

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

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

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

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

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

Sleeping Late Again

In recent weeks I have noted that Kate has been sleeping later that has been her custom for quite a while. In the past few days, however, she has been getting up at what I would consider an ideal time, around 9:00. That gives her what has usually been an adequate amount of sleep, 12-13 hours. It also gives me time to take care of a few things before she is awake.

Just when I thought she might be establishing a new pattern, she changed again. This morning, she was still in bed at 9:15. I checked on her a little later and discovered that she had gotten up from our bed and gone back to sleep in her room. Just before 11:00, I checked once again. She was back in our bed. At 11:25, she had gotten up and was making up the bed. Then she went to take a shower and dress. It was getting close to 1:00 when we got to Panera for lunch. I felt a little pushed because she had an appointment for a facial at 2:00. I tried not to rush her. I must have been successful because she didn’t express any irritation or have a panic attack. A couple of times she did say, “Just a minute” when I checked to see if she were ready.

As a caregiver, I am always trying to determine what, if anything, Kate’s current behavior signals for the future. In this case, I know that people with dementia require more sleep as the disease progresses. Sooner or later, I know that might happen with Kate. Am I seeing the first signs of this change? Is this judge a random shift from her regular sleep habits? Is there something else that I haven’t identified that might be causing the change? At the moment, I would answer “I don’t know” for each question. Because I am seeing so many other signs of change, I suspect this is part of a normal progression, and that will gradually sleep more than she used to. I will be looking closely to see if there is another explanation.

I had already been avoiding any commitments in the morning. Just last week, I changed the location of her next doctor’s appointment to a less convenient office so that she could see him in the afternoon. I will continue to be more rigid about this in the future. It will be easier for both of us.