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Noticing a Change

Over the past few weeks I have noticed that Kate has been asking me to remind her of the names of people more often than in the past. It is not surprising that this was most evident during our recent trip to North Carolina. I am, however, noticing that she is asking for names with quite a number of people and places. I suspect that the more she does it, the more comfortable she becomes in asking me to fill-in for her memory.

Simultaneously, she appears to be more comfortable in accepting or asking for my help in other ways (clothes to wear, getting ready to go places, etc.) I know that I have mentioned a number of times that she occasionally says something about how much she depends on me. Yesterday at lunch, she said it. Only this time she said it twice, the second time she gave me a very serious look as if to convey, “This is not a routine statement I am making.”

I have always tried to affirm my desired to be here for her. My most typical response has always been, “You can ask me as many times as you want. That is why I am here.” I have othe variations of this sentiment. “I will always be here for you” is one that I have also used. Most recently, I have said, “We are a team. We will do this together.” I don’t think she literally understands fully what I am saying. I know that she takes it as a statement of support for her. For me, that is the most important thing. I want her to know that she can count on me.

 

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Bad Dreams

I don’t recall if I have ever mentioned Kate’s having any problems with dreams. This has not been a big issue, but there have been several occasions when she has had them. Last night was one of them. It was also the longest lasting one. It occurred just before 5:00. I tried to calm her immediately, and that did have some calming effect but didn’t stop it altogether. She was completely calm by 5:30. During that time, I periodically told her, “I am right here. You’re going to be all right.” I also gently stroked her back. When it first happened, I also told her she had had a bad dream and that she was all right. She said, “I know.” But she didn’t calm down fully; so I believe she was still half asleep. Apart from sounds that she was making, she was struggling with her arms and legs as though she might be fighting someone or trying to get away from someone who was holding her. It was no surprise that she didn’t recall a thing when she got up this morning around 8:00.

Over the past few years, she has had other similar “bad” dreams although they were short-lived. She has more frequently had “good” dreams in which she talked to whomever was in the dream with her. A few days ago, she had a dream in which she was talking to me. It was like she was awake except for what she was saying and doing. I first noticed it when she was touching my chest and saying numbers, for example, “ten, eleven, twelve, etc.” I didn’t say anything at first. Then I said something that was a response to something she had said. That started a pattern that involved her saying consecutive numbers, and using her finger on my chest like a pen or pencil to write the numbers as she spoke them. When she got to the end of a column (for example, numbers in the 20s), she would take her finger up to the level at this she had begun the previous column only it was to the right. She would then pick up where she had left off (for example, 30, 31, 32, etc.) At one point, she stopped and asked, “What do you want to do now?” I spoke the next number for the next column. We proceeded to do 2-3 more columns of numbers before we stopped.

The most typical good dream has involved her playing the role of librarian, her career. She was always talking to students, giving instructions on various things. I would say she has probably had as many as 5-10 of these.

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Incidental Happenings

2017-10-23 (7:44 pm)

Yesterday afternoon Kate and I went to a skilled nursing facility for a visit with the mother of a friend who lives near us in Tennessee. The friend’s mother invited us to have a seat. Kate took hers on a love seat with a table beside it. The friends mother had glass of water on the table. Apparently, she had been drinking it before we arrived. As we were talking, Kate up the glass and took a drink out of it. Our friends mother picked it up and took it to the kitchen and brought Kate a fresh glass of water. I chuckled to myself because I have had this experience quite a number of times.

Tonight we are staying in a hotel near the airport in Nashville where we will catch our plane home in the morning. We drove to a pizza place near the hotel. When I opened the door to the car for Kate, I noticed that she had taken her glass from the restaurant. I called attention to it and returned it. This is not the first time this has happened. It is not a typical thing but there have been as many as five times she has done this at restaurants.

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What does it mean to “know” someone?

This is a question I would like to explore in another post. It’s too late to start answering a question like this tonight. Let me simply mention something that happened today that prompted my query.

As Kate and I walked to our car after saying goodbye to our son, Kevin, his wife Rachel, and their son (our grandson), Brian, Kate asked, “Who is that boy?” I said, “That’s Brian.” She said, “Who are his parents?” I said, “Kevin and Rachel.” What makes this intriguing is that she had just spent almost two hours with a group of about a dozen family members including Brian and his parents (our son and his wife). We had also had lunch with them yesterday. In anticipation of our seeing them, I had mentioned Brian several times during the trip preceding yesterday’s lunch. Each time she was puzzled and asked, “Who are his parents?” Each time I explained.

I am fairly confident that when she was with Brian and his parents that she had a sense of who he is. It seems equally clear that when she asks the question, she does not know who he is. We normally think about an Alzheimer’s patient as either knowing or knowing others. This experience suggests to me that knowing is more than that. It’s a continuum. I think this deserves further exploration.

 

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Flexibility Required

2017-10-21 (5:39 pm)

We’ve had a nice day. We made another visit to Sadie’s café for a cranberry scone and a large slice of pound cake, one of my favorites. We were there for about an hour before coming back to the hotel for another hour. As we were leaving the hotel room, Kate said, “Haywood Park.” I knew she was trying to show me that she recalled the name of our hotel. Of course, it was wrong again. I didn’t say anything, but the look on my face must have given away my thoughts. She said, “That’s not right?” I shook my head and told her it was the Hilton. She accepted it without a problem.

We met our son, his wife, their son as well as Kate’s brother, Ken and his wife, Virginia, at our favorite BBQ place for lunch. It was good to see each of them. We had seen our son in September, but it had been June since we had seen the others. It was especially nice to see our grandson who is now a freshman at TCU.

At lunch, we learned that the powers that be had decided to “stripe” the stadium by having people in certain sections wear black shirts while others wore gold, the University’s school colors. The section in which we were to sit was asked to wear black, and we didn’t have black shirts. To rectify this, we stopped by a shop and bought black golf shirts with the WF embroidered in gold on the front.

We got back to the hotel where Kate wanted to rest. It wasn’t too long before she wanted to get out of the room. This, as I may have said before, is not unusual. I suggested we go to Panera where we are planning to meet Ken and Virginia in the morning. Just before 5:00, I suggested we go back to the hotel before leaving for the football game at 5:30 or shortly thereafter.

When we got back to the hotel, we discovered that all the parking spaces were occupied. We ended up parking on the street about a block from the hotel. As we did this, I noticed a lineup of buses with TCU colors. It appeared that they were going to the stadium. I thought this was fortuitous as I didn’t really want to drive the car to the stadium and fight the traffic. I checked and learned that it is a free shuttle service to and back from the stadium.

Then we walked back to the room where Kate had wanted to rest before leaving for the stadium. We hadn’t taken but a few steps when she said, “Do we have to go to the game?” I hesitated a moment and said we didn’t have to go but that I had wanted to go. We tossed this around a few minutes, and I decided it was better not to push her even though she had said she would go. We came back to the room where I sent a text to our son and his wife informing them of our decision. Then I took our tickets to the front desk of the hotel and asked the man behind the desk if he knew someone who might like the tickets. He did.

The truth is that I didn’t have my heart set on the game at all. I did believe it would have been nice to be with our son and his wife for the game. It was that experience and not the game itself that was important to me. I also have to confess that I’m the kind of person who makes plans and then follows through on them. Thus, it requires a good bit of adaptability to decide not to go to a game for which we bought tickets a couple of months ago, bought shirts for a few hours ago, and came back from Panera to get ready to go to the game an hour ago. On the other hand, it illustrates two things I believe are relevant. The first is that living with Alzheimer’s involves lot of changes in plans. Second, it illustrates the importance of adaptability. If I were less adaptable, I would be miserable. As it is, I am disappointed, but I understand the need for the change. I feel for people who have more difficulty making this kind of change.

 

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An Early Start on the Day

We had a quiet evening after getting to Fort Worth yesterday afternoon. We had dinner at the Italian Village, a long-time favorite of Kate’s parents and of ours as well. We spoke with two of the children of the original owner. They remember Kate’s parents and their friends. It was a nice beginning to our weekend here.

We slept well until 3:15 when Kate got up to go to the bathroom. I am always concerned about this. On several occasions she has gotten up and tried to open the door to the hallway thinking she was going into the bathroom. At least once she had actually walked down the hall before I caught her. These experiences remind me of my father’s telling me that he had tied a string between his arm and my mother’s to prevent such things. I didn’t understand at the time. It is all too clear now.

It is somewhat more complicated at this particular hotel. I usually leave the light on in the bathroom and crack the door open enough to serve as a night light. At this hotel, the light only remains on for a certain amount of time. Then it clicks off automatically. For that reason, Kate struggled to find the bathroom. I told her to walk straight ahead and then open the door on her right. First, she tried to open the door to the adjoining room which is on the left. I repeated that she should turn to the right, but, of course, the door on her right was now the door to the hall. She tried that. I had the security latch on which prevented her getting to the hall. I told her again to look for the door on the right. She got it.

As usual, she was in the bathroom a long time. I began to be concerned that she might be having a problem and asked several times if she needed help. She said she was fine. Finally, she came back to bed. By this time, I was wide awake. I kept thinking about things to do and concerns about Kate and future travels and all sorts of other obligations. About 4:15, I got up and ran in place for about ten minutes. I have found that this helps me to relax once I am back in bed. It worked. I didn’t go back to sleep immediately, but I did get back to sleep. I didn’t wake up until 7:30, a rare event for me.

I got up and dressed. Then I went downstairs to see about breakfast. The hotel offers a continental takeout breakfast. I got two of those and came back to the room. Kate had gotten up. I ate my breakfast. She ate a muffin a drank her orange juice. Then she took a shower and dressed. At this point it was 8:45. She was ready to get out of the hotel room. I suggested we take our iPads and go to Sadie’s Cafe, a breakfast and lunch place that is owned by former neighbors of her parents. We were over there for an hour before coming back to our room where Kate has been resting.

We leave in 15 minutes. I have arranged for Kate to have lunch with four of her childhood friends at the home of one of them. I have repeatedly told Kate about this and the names of the people who will be there. She still couldn’t repeat them if I asked her to; however, these are people she will recognize and with whom she should Be quite comfortable. I am very optimistic about this.

While Kate is having lunch, I am picking up a former professor and taking him to lunch. He was very important in my career. He encouraged me to pursue sociology at a time when I was struggling to figure out what kind of career to pursue. We, too, should have a good time.

 

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Lunch with Another Friend and Then to Fort Worth

First, an aside. Four years ago today, my dad celebrated his 100th birthday. He was in rare form that day. He entertained the crowd of 94 with his reflections on life in in youth and comments about the people and changes he had seen. Two days later, I received a call at 6:30 a.m. telling me that they were taking him to the emergency room. He died exactly two weeks later. He left us in style. I never feel sad about his death. He lived life to the fullest and retained his sense of humor to the very end. To me he was a model of optimism and adaptability. Although he suffered hardships at various times in his life, especially as a teenager when his dad left his mother and him for another woman, he always made the most “of the hand he was dealt.”

Now a comment or two on our second full day in Texas. Although we had had a full day yesterday, Kate was up early this morning. I had gotten up an hour or more before she did and brought scrambled eggs and sausage to the room for me as well as a couple of muffins, yogurt, and orange juice for her. After she had dressed, she was ready to go just like she is when we are at home. I suggested we walk over to Starbucks which we had done yesterday. We were there about an hour before returning to the room for a break. Then we headed to meet another childhood friend of Kate’s, Meg Wright.

Unfortunately, I had given Meg the wrong location of the restaurant where we were to meet. Thus, we got together a little later than I had intended. That did not, however, diminish the fun that Kate and Meg had before, during, and after our meal. When it was time for us to leave, Meg and Kate hugged each other. Tears welled up in my eyes as I thought that this may be the last time these two see each other.

Once again, Kate has shown some confusion over a number of things. This morning she got up and went to bathroom while I was in the other room. She walked out of the bedroom, and I asked if I could help her. She asked me where the bed was. She was standing only a few feet from it. I pointed to it and said, “Right there.” She turned around and went back to bed. A little later, she got up again and asked me where the bathroom was.

While we were waiting for Meg, she asked me several times who it was we were waiting for. Several times, I also mentioned our grandson, Brian. Each time she asked me who is parents were. I told her he is our son and daughter-in-law’s son. I’m not sure if she ever got that straight. I think a lot of information is being thrown at her, and she is in overload.

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More New Things

For a long time I have been sensitive to Kate’s behavior when we are eating out. Up until last night, she hadn’t done anything that was likely to be noticed by anyone who was not actually sitting at the table with her. The thing that has bothered me most is that she often arrives at a restaurant looking as though she is tired. Getting out of the car and walking into the restaurant she often looks sad and tired. When she is seated, she often sits there with her eyes closed as though she were going to sleep or is asleep. This behavior doesn’t bother or disturb anyone but me. I tend to feel self-conscious. I wonder if the servers and people around us might think the two of us have had a serious quarrel.

The other thing that has bothered me is her use (consumption) of paper napkins to soak up her saliva. Fortunately, several of the restaurants we patronize give us an extra supply with our meal, sometimes before. Often, we have only a cocktail napkin under each of our drinks. She goes through hers rather quickly and then often asks for mine. That is consumed quickly as well. Along with the salivation, she sometimes burps. It is not very loud but loud enough to be heard at an adjoining booth or nearby table.

Last night, she did something new. Kate had ordered a pasta entrée, and the server brought her a small dish of Parmesan cheese before our meals arrived. I noticed that Kate took several spoonsful and ate them. When her pasta arrived, she dumped the remaining cheese on top of the pasta. The latter is not unusual. She typically puts the entire dish of cheese on her pasta.

This afternoon she has been outside working in the yard. Most of the time she works in the front flower beds pulling leaves. Today she has been out back. At one point, I went out and noticed that she had cut one of the hydrangeas to the ground. I commented on it. She asked if that were all right. I told her it was fine. I just wondered if she remembered that they will die back for the winter and grow back next spring. I also said they would live nicely for another 2-3 months. I just looked outside. It looks like she cut down two plants and left one.

Yesterday she came in the backdoor and called me. I saw that she had brought a man with her. He told me that he does yard work for some of our neighbors. Then he took me outside and showed me the numerous shrubs whose leaves Kate has pulled off and have not grown back or not grown back fully. He told me they needed to be taken out and that he would do it. I told him I had plans and that I was not going to take them out right now. Kate was with us or I would have fully explained why I didn’t want him to do anything. My plan is to wait until Kate is in a later stage of her illness and to have all of them taken out, the flower beds cleaned out, and have a landscaper put in something new.

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Symptoms

We drove to Asheville for lunch, a play, and dinner. We had a nice lunch and Jenny, who works the front desk, gave us an upgrade on our room. A few minutes ago we got back from the play. Before the show began, I got Kate a bottle of water that she took with her into the theater. At intermission, the man in front of her said something to her about squeezing the bottle and making noise during the first act. She said she didn’t squeeze it. He said, rather sternly, “Yes, you did.” She said she was sorry. A few minutes before the second act began I leaned down to him and told him that she has Alzheimer’s and that it was my fault that she had made the noise and that I just didn’t hear it (which was true). At the end of the performance, Kate tapped him on the shoulder and said something about her mother’s having gone to TCU. Then she asked me what her mother’s maiden name was. It was a good thing I had told the man about her diagnosis. He smiled and asked her if she enjoyed the performance. She told him she had. Then we moved on.

As we were walking back to the hotel, she said, “Where are we?” I said, “Do you mean what city are we in?” She nodded. I told her Asheville. She just said, “Oh.”

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Asking Permission

Kate’s requesting permission to work in the yard and specific places in the yard is becoming a regular pattern. It also extends to things like asking if she should take or leave the glass with her iced tea at the restaurant as she did tonight or take it with her. It has been a while, but on two different occasions, she has started to walk away with her glass from our favorite Mexican restaurant. One time the owner caught her and asked if she would like to have a take away glass. The other time I caught her before anyone noticed.

She also continues to make requests without verbalizing them. For example, with her glass of tea tonight, she just lifted it up and brought it to her chest with her face making the gesture of a question. Yesterday for the first time, she did this with someone else. She walked into the examination room with me at my ophthalmologist’s. She held up her iPad and gestured to the assistant who brought us to the room. The assistant didn’t know what she was asking. I told her.