Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.

Thoughts on Sleep

During the first few months of this year, Kate’s sleep pattern has changed. She is still going to bed about the same time as always, between 8:00 and 9:00, but the time she gets up has been more erratic. I generally let her sleep as long as she wants, but several times I’ve had to wake her. She has slept until noon or shortly thereafter a couple of times and 10:30 or later more times. In between those late sleeping days, she has gotten up as early as 7:30, but more often 9:00 or a little later. Prior to taking Trazadone, she had difficulty sleeping at night. Trazadone changed that. That’s been a good thing. She has slept beautifully since then.

My personal problem, not hers, is that I am particularly interested in her getting up earlier on days when we have a sitter. Early would be 9:00. That way she can get showered and dressed leisurely which normally takes up to an hour and a half. Then we can have lunch without being rushed. It also gives me more time with her. A number of times over the past few weeks, we have rushed to lunch and back to meet the sitter. Neither of us likes being rushed.

During the past ten days, I have not given her Trazadone the night before the sitter comes. That seems to have worked. She hasn’t gotten up too early, and it allows us a comfortable amount of time in the morning before I have to leave.

This change seemed to have worked until this past Thursday when she slept until noon. She had taken Trazadone the night before. By the time she was ready for lunch, it was almost 1:30. That wasn’t a day for the sitter, but I still felt that requires a greater change in our days than I am ready for right now.

I have also begun to wonder if taking less Trazadone could relate to her unusually good mood over the past week. Her moodiness has always been limited to the early morning. She is slow to get going. That was true before Alzheimer’s. She sleeps later than I do, and she is not ready for conversation until she is fully awake. For that reason, I don’t ever recall our having breakfast together in our 55 years of marriage except when we are traveling. Even that is extremely rare. What has been different the past week is that she has been more cheerful when she gets up than I have seen in quite a while.

That is leading me to consider dropping the Trazadone altogether. I plan to explore that with her doctor in the coming week. He had opened the door to our eliminating some of her medications in one of Kate’s recent visits. I think Trazadone could be a good place to start.

It’s been a good week.

Yesterday was a full day. We attended a funeral for the woman who cleans our house. In order to avoid rushing by dressing and undressing for the service, we dressed for the service before going to Panera. We were there at 10:30. That gave Kate time to have her muffin and work a few puzzles. We left for lunch shortly after 11:00 so that we could be at Bluefish right after they opened at 11:30. This was really a long way to go given that the funeral was to the west just outside of Knoxville, but I like sticking to our routine as much as we are able. As it turns out, the timing was perfect. We had a leisurely lunch and ample time to pick up Melanie, a colleague at my office for the past 37 years and get to the service on time (at least the time we intended to be there). It turned out there was a very large crowd. We were just in time to get seats. If we had been much later we wouldn’t have been so lucky.

As I have mentioned several times, Kate has had a very good week. That continued yesterday. This was one of those times when I picked out her clothes, and she was very cooperative about getting dressed. The funeral service was over two hours with a lot of singing, praying, and praising. I knew she was unable to follow what was going. I had told her several times that we were going to the funeral, but she wasn’t able to remember. Near the end of the service, she leaned over to me and asked, “Where are we?” I told her we at Libby’s funeral service. She said something like, “Oh, I’m glad we came.” I can’t imagine what it was like for her sitting there all that time and not knowing where she was or why. She handled it beautifully. Her only problem was her arthritic knee. That is making getting around more challenging.

When the service was over we took Melanie back to where we had picked her up and then headed back into town. It was early, but we stopped for dinner before going home. After we were seated, Kate said, “Are we in Fort Worth?”

Despite this kind of confusion, she enjoyed the day. We spent a little while relaxing before she turned out the lights at 8:00. We have now completed seven straight very good days.

Yesterday’s routine was a bit different, but it was another good day.

If you are a regular reader, you are well aware that Kate and I lead a very routine life. That is in large measure because that is the way I try to organize my personal life; however, it also relates to my belief that having a routine might be good for Kate. Our typical day involves a visit to Panera in the morning, out to lunch, home for a while, a visit to Barnes & Noble or Panera, home again, out to dinner, back home, relaxing and going to bed. We don’t duplicate any of our restaurants in a given week, but we do have specific restaurants at which we eat for each meal of the week. There is some variation on Tuesday night, Thursday, and Sunday night. I might add that at each restaurant we have our favorite meals and almost always order the same thing each week.

Yesterday we didn’t follow the pattern at all. First of all, Kate didn’t get up until noon. That meant that we skipped what is perhaps the most regular part of our day, Panera. She wasn’t ready to leave for lunch until almost 1:30. I decided to go to a local deli we rarely visit because it is so busy at lunch. That turned out to be a nice change.

After lunch, we came back home. I put on some music and worked on my blog while, Kate worked jigsaw puzzles on her iPad. I was prepared for her to be ready for either Panera or Barnes & Noble after we had been home an hour. It turned out that we didn’t move for almost two and a half hours. By that time, it was getting close to dinner.

We had had such a good week so far and our daily routine had been so different, I decided to do something different for dinner. I made reservations at Casa Bella. That may not seem different since we eat there the first three Thursdays each month, but those are nights we go for dinner and music. We sit with a group and have a great social and musical evening. Last night we sat a table for two in a smaller and quieter room and reminisced about the many occasions, most happy but some sad, that had brought us there. We usually order the veal piccata. This time we chose one of their daily specials, roasted pork shoulder with baked apples with fennel over polenta. Even for somebody who likes a routine, it’s nice to do something different once in a while. It was a perfect way to end our day.

Many triggers still work.

In my previous post, I noted how difficult (impossible?) it is for Kate to remember the name for Grant Wood’s American Gothic. That doesn’t mean that there aren’t other triggers that lead her to remember things I might think are long forgotten. I’m thinking of two specific things that occurred in the past few days. Both of them involves passages from the Bible.

The first came about when I had done something to which she said, “Well done.” That triggered her to recall the passage that says, “Well done, thou good and faithful servant.” She didn’t remember the exact words, but she was close. The second occurred yesterday when I told her I was thinking about going to a restaurant we had not been to in a while. First, she said, “I’ll go wherever you go.” That caused her to remember the Old Testament passage in which Ruth tells Naomi, “. . . where you go, I will go, and where you lodge, I will lodge. Your people will be my people, and your God, my God.” Once again, she didn’t get the exact words, but she had a pretty good idea.

There are other times when her own thoughts act as triggers. Yesterday, for example, we were driving to lunch when she said, “June Allyson.” I have no idea what she might have been thinking that brought her name up, and she couldn’t tell me. This is not something that occurs a lot but often enough that it doesn’t surprise me. It just shows that like the rest of us, her brain is still working. Thoughts are going through her head all the time.

On related note, a couple of times lately, she has pointed to someone and said, “He looks like your brother.” I have looked and could see a resemblance. What makes this interesting is that she often can’t remember his name. This reinforces the opinion I have expressed before that remembering the name associated with a person is only one, and minor, part of “knowing” someone.

Two nights ago at dinner, she engaged actively in conversation with our pastor and his wife. After we said our goodbyes, she asked me their names. I gave her the wife’s first name, and she asked for the last name. I told her. Then she asked the pastor’s name. After I told her his first name, she asked his last name. The whole process of labeling seems to have come “unglued,” but she is still able to interact with amazing success. That’s another thing for which I am grateful.

American Gothic

Four years ago, Kate and I took our 15-year-old grandson, Brian, to Chicago. Among the places we visited was the Art Institute of Chicago. Knowing that this might not be among the most exciting places for him, we explained that we would not take a tour of the entire museum. Instead, I had found a brochure that identified about ten well-known pieces of art in the museum. This turned out to be an excellent way to engage him. Grant Wood’s American Gothic was among them. We told Brian that this was a painting he was likely to see in the future. When we said that, he recalled that one of the restaurants in Knoxville to which we had taken him has a print of it. Kate and I eat dinner at this restaurant rather frequently and always think of Brian when we see it. One of the jigsaw puzzles Kate works is American Gothic. Thus, it is a painting she sees quite often.

As with so many things, she has trouble remembering the painting’s name. Sometimes she gets “American,” but can’t remember Gothic. It seems to be prompted by seeing a print of the painting or the puzzle she is working on. A very typical experience occurred last night. She was working puzzles on her iPad and with sense of indecision asked, “American?” I said, “Gothic.” Then she repeated the full name. She looked down at her iPad and asked, “What is it again?” I told her again. This happened several times before she stopped. This is the way it always goes. I don’t think she ever gets more than American, and not always that, but she never stops trying.

Kate’s Brother Ken

Since Kate was diagnosed with Alzheimer’s seven years ago, I have read quite a number of personal experiences with the disease. Most of these have been written by caregivers of a family member with Alzheimer’s, a smaller number by people with it. It hasn’t surprised me that despite having certain things in common, people (both caregivers and their loved ones) respond to the disease in very different ways. Throughout our own journey, I have tried to be sensitive to this fact. I’ve tried not to write as though others’ situations, experiences, and responses are like our own. Even within a family, there are often differences. Let me tell you about Kate’s brother Ken.

In October 2013, two and a half years after Kate’s diagnosis, we learned that he, too, was being tested for Alzheimer’s. They received the diagnosis in November of that year. He is a little more than two and a half years younger than she. That means he and Kate received their diagnoses when they were about the same age. He and his wife, Virginia, live in San Angelo, so we don’t see them very often. We have, however, tried to visit them each time we visit our son and his family in Lubbock. In addition, Ken and I talk periodically by phone and also exchange email messages.

From the outset of their diagnoses, Kate and Ken have approached their situations quite differently. Kate has always wanted to be very private. Other than Ken and Virginia, she has only told one other person about her diagnosis. That was her best friend. Kate hasn’t wanted to join a support group or read anything about Alzheimer’s or other people’s experiences with the disease. She has simply wanted to live her life as normally as she could.

In the early years, she experienced a good bit of frustration from her memory lapses and difficulty completing tasks like working on the computer or dialing numbers on the phone. She has thought a lot about Alzheimer’s, but she has not wanted to talk much about it. We have only obliquely approached the subject. Nowadays, we never mention it. I don’t believe she thinks about it at all except when we go to her doctor’s appointments. She had her latest appointment a few weeks ago, and nothing at all was said about Alzheimer’s. I believe she still recognizes she has the disease, but I don’t believe she associates it with any special problems she has. I never mention it to her. At this point, I don’t see any benefit in her fully understanding the disease, where she is on her journey, and what lies ahead.

Ken, a retired psychology professor, has approached his diagnosis differently. Shortly after he was diagnosed, he informed his family and close friends. He found a support group of others who have dementia and continues to participate in it. He once appeared on the TV news in San Angelo that featured his group.

I’m not sure whether it is his background in psychology or his personality or both that account for his approach. He has also been more deliberate in learning more about Alzheimer’s, ongoing research on the topic, others’ experiences with it, and exercising his brain.

Since I launched this journal as a blog in January, Ken and I have had phone conversations and emails about ways that we might include his experiences and approach to Alzheimer’s within this blog. I don’t think either of us knows exactly where this might lead, but we are going to take a first step.

With that in mind, I thought I would first give you a glimpse of him via a letter he wrote to his sons. The letter, which is copied below, was written in January 2014. This was very shortly after he had received his official diagnosis. He had previously informed them by phone of his test results. This letter was the first in a series of annual letters in which he provides updates. I may share the others in subsequent posts.

Let me point out several ways Ken has responded differently than Kate.

  1. Ken informed his children very shortly after he knew the diagnosis. He and his wife, Virginia, had been with us in Knoxville in October to celebrate my dad’s 100th. At that time, he told us that he was undergoing testing. That was completed in January. After we got the word from Kate’s doctor, we kept the information to ourselves for a long time after that. It was three years later that I told our children because I thought they needed to know.
  2. He was already thinking about a support group and exercising his brain with his photo albums and Lumosity.
  3. He considered some of the most disturbing manifestations Alzheimer’s and wanted to protect Virginia from any potential aggressiveness he might display.
  4. He wanted to clarify his preferences about his care and his desire that she be able to spend her summers in Michigan as she has done for most of her life.

Here’s the letter to his children.

February 2, 2014

Dear (children)

 Virginia and I had a recent meeting with our neurologist to update my diagnosis and discuss strategies for the future.

 He again went over the lab results with more detail, but you already know the general essence of the findings.  To summarize, the results show that I do indeed show clear evidence of mild Alzheimer’s.  While there is great variability and no precise predictability, he said that we are probably looking at a 10 – 12 year time span progression for the disease.

 The good news is that we caught the diagnosis relatively early and that new medications are being developed.  Also, I am in good general health.  Virginia and I are walking together, and we are looking into a “memory support” group for early Alzheimer’s patients.  I faithfully exercise my brain with my photo album projects and play “Lumosity” on almost a daily basis.  The bottom line is that we are being proactive in our efforts to extend the cognitive quality of our lives together.  We hope to have many good years left together for us and our families.

 I inquired about the possibilities of future aggressive behaviors on my part.  Again, Dr. Smith said there are no clear predictors.  It helps to start out with a non-aggressive nature, so I have that on my side.  Some people become passive and withdrawn. However, there does come a time when the disease takes over and “Ken” will no longer be in charge. I saw this with Mother and her stroke-induced dementia, when she occasionally became somewhat combative and argumentative –traits I never saw even once in her normal existence.

 I am writing this letter so that there will be absolutely no future doubt about my feelings on this matter.  If I exhibit aggressive or combative behavior toward Virginia, I want Virginia to have no hesitation to use prescription drugs to control that behavior, even if it further impairs my mental abilities.  I also instruct Virginia to physically move me to a separate living facility when she decides that it is time for that to occur – and I trust her judgment on this issue.  I hope that you will provide advice and counsel on these and related matters, but the ultimate decision will have to be made by Virginia.  I want the decisions to be in her best interests.  I have absolutely no fear of not being well cared-for, or that such a decision will be made “before it’s time”.  In contrast, it is the thought of my not being removed from such a situation that scares me more than anything else – thus, this letter.  Please save this letter and, if I later protest, show it to me as a reminder when the time comes. 

 On a related matter, I want it clear that I wish Virginia to be in Wisconsin during the summers with our children and grandchildren, even if I am unable to make the trip.  If I have to stay in San Angelo, she will get a well-deserved break.

Virginia is not aware of this letter.  I will show it to her the day after I mail it.  I want you to know that I am writing this of my own volition and that she has not requested that I write such a letter.  Please store this letter in your lock box or a safe place where it can be retrieved in future years – if need be.

 I love you all so very, very much.  I also look forward to many good years in the future before we need to face the decisions outlined in this letter.



Follow-up to My Earlier Post

I was right. The day is coming to an end on a high note. As we were finishing our dinner tonight, our pastor and his wife came in for dinner. We asked them to join us and then spent the next hour in animated conversation. During that time we saw another church member and her son as well as two people the pastor and his wife knew. As often happens, a routine meal turned out to be a very pleasant social occasion. It reminds me once again why I think the decision to eat out for all our meals has been so beneficial to us.

When we returned home, Kate commented on how much she likes our bedroom. Then she got dressed for bed and sat in her chair in the bedroom working on her iPad. I turned on PBS Newshour that I had recorded earlier. Like almost every evening it was a very peaceful end to what had been a good day. Then a few minutes ago, she asked, “Where are we right now?” I said, “Knoxville.” She responded, “So we’re still at home.” You may find it hard to imagine that she could sit here in her own house that she enjoys so much and then ask where we are. I hear enough things like this that I am no longer surprised. And because she has been so happy and we have been enjoying our time together, I don’t feel sad either. I’ve known for over seven years that we were coming to this, but I didn’t expect that we could find happiness within the context of such a radical change in the way her brain works. I also know that this will not last forever, but we will enjoy it while we can.

Three in a Row

After two very good days during which Kate has seemed very upbeat and cooperative, I wondered what today would be like. It is now 5:30, and we’re about to stretch the good days to three in a row.

This morning she slept a little later than I had expected, so we didn’t leave for Panera until almost 10:30. When she came into the kitchen (where she meets me each morning when she is ready to leave), she was cheerful and joked with me a bit while taking her morning meds I had set out for her. She usually takes several of the pills and turns around toward the sink. I have to watch because she generally forgets about the pills she has left on the island. This morning she said, “I know you. Don’t worry. I’m not gonna forget the others.” She finished taking the first few pills and started walk toward the door to the garage. I looked on the island. The other pills were still there. I hesitated but reminded her about them. I hated to do it because I didn’t want to embarrass her for just having let me know she wasn’t going to forget them. She had apparently forgotten having said anything and simply took the remaining pills and wasn’t bothered by my letting her know about them.

We spent an hour at Panera and then went to lunch. We got back home about fifteen minutes before the sitter arrived. As she has the past three days, she brushed her teeth and then got into bed to rest. When the Mary arrived, I took her into the bedroom to say hello to Kate and told her I was leaving for a meeting and then to the Y. Kate told Mary she was glad she was here. She asked me what she could do. I told her she could rest as long as she wanted and then the Mary would take her to Panera if she wanted to go. She liked that idea. I left her resting.

When I returned home, she and Mary had been to Panera and were in the family room. Kate was lying on the sofa. After Mary left, Kate commented on how well she takes care of things. I said, “And isn’t it nice to have company?” She agreed without any hesitation. This is good for my own comfort level in leaving her. She is still resting but not asleep. We’ll go to dinner shortly. I know the balance of the day will go well. Afternoons and evenings consistently go well. I’m feeling grateful.

Another Good Day

This is a short follow up to my previous post about our good day yesterday. I closed that by saying, “We’ll see what tomorrow brings.” Now I know. It’s been another good day. Once again it was a day without any special events. We just went about our daily routine. Kate has also been unusually good humored all day.

I won’t detail exactly what we did as in the previous post. I would just like to make two observations. First, and more important, it has now been two days that Kate has not complained about the arthritis in her knee. Except for how slowly she walks and gets in and out of the car, I wouldn’t know that she has a knee problem at all. I don’t believe this was because of any lessening of pain. I believe it relates to her mood. She has simply been more positive in her outlook today. The only sign of annoyance she displayed all day was at Panera this morning when a young child screamed a couple of times. As I have said before, she is very sensitive to sudden and/or loud noises. As much as she loves seeing young children, she is often bothered by the noises they make.

The other observation is not directly related to her mood. It relates to her use of hand signals to communicate with me. I have mentioned that she uses hand signals to ask things like, “Should I get put on my night clothes?” Or “Should I take my iPad?” Or “Should I take my cup into the restaurant with me?” I don’t believe, however, that I have said anything about her responses to me when I say things like, “I love you.” “If I had the chance, I would marry you again.” Or any other loving or complimentary words. Instead of verbalizing her response, she points her index finger at herself and then at me to say she feels the same about me. This is not something I had known to be a characteristic of someone with dementia, but it may be. I do know That someone I follow on Twitter recently mentioned that his wife used a hand signal to indicate she was ready for their nightly orange for dessert; however, his wife has some impairment of speech. Kate does not.