Changes | - Part 37

August 6, 2018August 6, 2018

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.

August 5, 2018

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.

August 5, 2018August 5, 2018

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.

August 1, 2018

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.

July 31, 2018

Another Slow Start

At the moment, I am at Whole Foods where I am waiting for Kate who is getting her monthly facial. I always schedule these appointments at 2:00 to give her plenty of time to get ready. Today that was almost not enough. After getting up earlier than usual yesterday, she slept late again today. At 11:45, I tried to wake her. She was not eager to get up but not cross. She mostly just ignored me. I put on some music in the bedroom thinking that might provide a gentle wake up. By 12:15, she was still not up, so I reminded her of her appointment and that I wanted to make sure she got lunch first. That did the trick. She was up, but she didn’t move any more quickly than usual.

We went to Panera since it is close to both home and the spa. We arrived there at 1:25. I decided to save time by just getting her a muffin that she would be able to start eating right away while they prepared a sandwich and salad for me. I got sliced apples with my order so that she could have them. By the time we both finished what I had gotten, it was time to leave. We arrived at the spa at 1:59. I was glad that I never really had to push her. As she was getting dressed, I explained that we would have very little time for lunch and that she needed to get dressed if we were to eat at all. She responded very calmly and never changed her speed.

Earlier this morning, I sent an update on the patient portal for her doctor’s medical practice. Kate has a 1:45 appointment with him on Thursday. I conveyed the change in her sleeping habits although I am not expecting him to make any changes in her prescriptions. I definitely don’t want her to go back on Trazadone. That would probably exacerbate the problem. I hesitate to call this a problem, but it is a bit of one for me. It would be nice if I had a better idea of when she is going to get up. I had thought I was pretty safe making appointment for 2:00. Now it looks like that may be a little too early.

More than that, I think I am bothered by its altering my schedule. Since I get up early, I am ready to eat about 11:30 or noon. Waiting until 1:30 or 2:00 means we don’t have much time between lunch and dinner. That, too, is my problem. Kate is not at all affected by this. If this is something that becomes a regular pattern, I will probably make sure that I have something at home to tide me over until she can get up. Adapting to change is not something new. It will work out.

July 31, 2018

The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes. I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

July 30, 2018

Another Day Without Panera (And we survived. )

As I reported in my previous post, Kate was slow to get going yesterday. We skipped Panera and went straight to lunch. We didn’t arrive at the restaurant until 1:50. It was after 3:30 before we got back home. We spent almost an hour relaxing in the family room when she said she want to rest a while. Shortly after that, our son, Kevin, called. I went in the bedroom to see if she would like to take the call, but she wanted to rest. That’s just one more change that is taking place. In the past, she would have jumped on the phone right away. Kevin and I must have talked 45 minutes or so. She continued resting another thirty minutes.

When she was up, it was already an hour past our typical time for dinner. I didn’t think that was a problem since we had eaten lunch so late. By the time we got home, it was 8:15. I decided not to watch another musical. We just relaxed a short time. She surprised me by putting away her iPad and going to bed right after 9:00. I had been afraid she would not be able to go to sleep after sleeping so late and then taking a late afternoon nap. I was wrong.

I wasn’t sure what to expect this morning. Not surprisingly, she was up early and was ready for Panera at 8:45. Most of the time she isn’t even up by that time. So here we are. That makes me happy. We should have plenty of time together before the sitter comes. We should not have to rush our lunch. I suspect, however, that she is likely to get tired and want to go home in another hour. That would be close to the time I would get her lunch. We’ll see what happens.

Upon arrival, I noted another change that is occurring. Typically, I set up her iPad at our table and then go to the counter to order and pay for her muffin and our drinks. She goes directly to the drink dispensers and returns to the table. I wait near the table until she has her drink before going to the counter. Otherwise, she doesn’t know which table is ours. Today she approached me and said, “Where do you get ice?” This is something she has been doing for years. Once again, I shouldn’t have been surprised. Recently, I had noticed some confusion when she was at the dispenser. I thought it was just trying to decide what drink to get. Now I think it must be all the all options she has. Like most dispensers, the ice is right among the various drinks. It can be confusing, especially to someone with Alzheimer’s. On one or two occasions, she has given her cup to me to get ice and her drink. This may become our new normal.

July 24, 2018July 25, 2018

Increasing Signs of Dependence

Yesterday was a mixture of highs and lows. As I mentioned in my previous post, we were off on a good start. Kate was up early enough for us to get to Panera for her muffin. More importantly, that meant that I didn’t have to rush her to have lunch before the sitter arrived and I left for Rotary.

When Anita arrived, Kate gave me the impression that they would make a trip to Panera while I was gone. When I returned, I found that she had told Anita that she was tired and wanted to rest. She apparently rested most of the time (4 hours). As soon as Anita left, Kate told me that she had missed me and was glad I was home. She had been resting on the sofa in the family room but got up and was ready to go.

I asked if she would like to go to Barnes & Noble. She said, “Anywhere. I just want to get out of the house.” This is further evidence of what I have mentioned before. She doesn’t like to stay at home (or anywhere else) for more than an hour or two. When she doesn’t go to Panera while I am gone, she gets bored. Anita said she had encouraged her to go to Panera, but Kate said she was tired and wanted to rest.

This is not the first time this has happened, but it is not a frequent occurrence. It has made me wonder if she is beginning to be self-conscious about being with a sitter when she is at Panera. I have also noted what I thought might be signs that she is less comfortable with Anita than with Mary. One other possibility that crosses my mind is that she is just becoming so dependent on me that she feels less comfortable with the sitters than in the past.

When we got in the car to go to Barnes & Noble, she asked me where she could put her cup. This was another first. She has never been unclear about where the cup holders are in the car.

We were at Barnes & Noble for about an hour and a half before leaving for dinner. As we left, she said how nice it was that there is a place like Barnes & Noble where you can spend a little time relaxing. For a long time, I have sensed that she feels at ease at both Panera and Barnes & Noble. This was the first time I had heard her express her feelings about it.

At dinner, we talked about our family and our marriage (her favorite topic). During this time, she asked about the names of our children and grandchildren. Then she surprised me by asking, “What is the plan?” I wasn’t sure what she meant and asked if she meant for “tonight” or “tomorrow?” She said, “Whenever. I’m just going to do whatever you say.” After thinking about it, I believe she was saying saying it was too much for her to plan anything. I told her I thought we would go home and relax a while in the family room and then go to the bedroom where I would play the last portion of Les Miserables. She liked that.

At 8:00, I told her I was going to take a shower and that when I got out we could watch Les Miserables. I had been playing an audio version of the musical and left it playing when I went to shower. As I left the family room, I noticed that she had put down her iPad. She had closed her eyes and was listening to the music. She commented on how beautiful it was. When I got out of the shower, I found that she was still sitting in a chair listening to the music with her eyes closed. A few minutes later, we went to the bedroom and watched the remaining portion of the DVD. Once again, she loved it.

Then she started getting ready for bed. She went to her room to get her night clothes. When she returned, she said, “You know I could not live without you.” She said this is a way that really meant it, not that she was simply expressing how much she likes me. It is clear to me that she recognizes that she couldn’t live without my help. She told me she doesn’t want to be anyplace without me.

I am tying this back to her reaction to the sitter. I think she has become so dependent that she feels less secure when I’m not around. When I think of how much she is not able to do, I can understand her insecurity. I am glad to be here for her but sad to see her arriving at this place.

July 22, 2018

The changes are gradual, but noticeable.

Yesterday I checked on Kate at 10:30. She had gotten up but had not yet showered or dressed. Not long ago, we would have been at Panera. It was after 11:30 before she was ready to leave, so we went straight to lunch. This has occurred with increasing frequency over the past few weeks. A number of people at Panera have asked where we’ve been. I’ve told them we’re sleeping a little later lately.

It was late April or the first of May that her sleeping pattern began to change. At that time, I wondered if this could be a sign of some overall change that was taking place. I also considered the fact that she was taking Trazadone. It is often given as an aid to sleep. After consultation with her doctor, I took her off of it. On the whole, I believe that helped a little. I do believe she is sleeping fewer hours each day. Before taking her off, she usually slept 12 to 14 hours. Since then, the time she wakes up has been more erratic. I would say that she sleeps 11 to 13 hours but occasionally as long as 15 hours. For a long time, I haven’t made any commitments before noon. Now I feel more comfortable if we don’t have any before 1:30. For example, her doctor works out of two offices. One is a good bit closer to us. I have changed her appointments to the farther distance so that she can get a 2:00 appointment.

There are also some days when she sleeps late and then naps again in the afternoon. That happened recently on a day when we had a sitter. She had slept until almost noon. The sitter said she slept another two hours while I was gone. When we returned from lunch yesterday, she went directly to bed and rested almost two hours.

I have been especially sensitive to her sleep routine because I lost a friend who had dementia last year. He was progressing about the same as Kate. After we last saw him, he started sleeping more and died a few weeks later. That may be an unusual occurrence, but I took notice of it.

Kate’s changes are more than just her sleep. As I have reported in other posts, she often picks up items of clothing to take with her when we go out. They are never things that she might need. In most cases, she hasn’t said anything to me about why she is taking them. I don’t ask. I learned a long time ago that she can’t explain why she does things. As we were getting ready to leave for lunch, she said, “I have an extra pair of socks (in her hand). Should I take them?” I said, “I don’t think you’ll need them. Why don’t you leave them here.” Sometime in the past week or ten days, she asked the same thing about some other item. I gave her the same response that time. Otherwise, I just let her bring whatever she has to the car. Normally that is where it stays until I bring it back in.

She has a particular attraction to socks. She often gets out two to four pair of socks to wear even if she doesn’t take them with her. I find them in various places around the house. She has also been exploring closets and drawers that she doesn’t normal check. This morning she got into a closet where she keeps her dressy attire. I keep several tops in there so that she has something appropriate when we are going to a special event. She picked out a very attractive top I had bought a couple of months ago. I didn’t say anything. She looked great, and it’s a top that is multi-colored and won’t show stains. While she was sleeping, I noticed that the bottom drawer of my bedside table was open. Then I saw that she had taken out a small cassette recorder and a charging cable and left it on the bed.

More significant is her change in dependence on me. She is asking for and accepting my help more frequently. It wasn’t long ago that she was regularly declining my hand when going up or down stairs or curbs. Now she often accepts and frequently asks. Its kind of cute the way she asks. As I step off a curb, she’ll simply say, “Hand.” She doesn’t say it sternly. It is a gentle request for my help. She does something similar when dressing. It’s almost like a little chirp. She says, “Help.”

I have been well aware that people with dementia need help dressing, but I never really thought about it much or understood what the problem was. Now I am learning. Getting pants and tops on so that they aren’t backwards or inside out is more challenging than I realized. There is also the problem of the sequence or order in which you get dressed. On occasion when I observe her dressing, I am struck by how much concentration is required for her to figure out what she should do next. Sometimes she just has to call, “Help.” The interesting thing is that this has occurred so gradually that she doesn’t seem to express any frustration or irritation that she has to ask for my help. She is very comfortable asking. She doesn’t do it all the time. She is still picking out her own clothes most of the time.

Of course, one of the most noticeable changes are in her memory. The fact that she asks my name more often is among them. When taken together, all of these things make it clear that our lives are becoming very different. Change brings with it a lot of feelings. At Broadway Night at Casa Bella on Thursday, they sang a song I had never heard, “Happy/Sad.” That seems to be where I am right now. I’m happy for all the good times we have had and will continue to have, but I’m also sad as I contemplate the changes taking place.