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Confusion

Quite a few times I have mentioned Kate’s Deja vu experiences that are almost a daily occurrence. I believe I have also mentioned that she sometimes imagines I have said or done things, for example, thinking that I had told her we were going somewhere when I had not. Just before going to lunch she said something that makes me wonder if this is a pattern that will continue to escalate. This is not the kind of thing I was expecting. Here is what happened.

Several days ago, I went to the backyard where she was working in the flower bed against our wall. I didn’t see a panel of grill work from her parents’ home that we had put in the flower bed. When I said something about it, she didn’t know what happened. Then she said she remembered that, Ronnie, a woman who has helped her with her landscaping had taken it to be painted. I thought that seemed strange since to the best of my knowledge, the Ronnie doesn’t have anything to do with painting. Then today when I went out to the yard to tell her it was time for lunch, she told me she knew where the grill work was and took me to the spot where it had been standing. Whatever had been holding it upright had broken, and it was lying on the ground mostly covered up by leaves. Apparently it was completely covered the other day when I missed it. After she came in to take a shower and get ready for lunch, I was in the bedroom watching a football game when she called to me and said something like, “Richard, I need to tell you something. I guess you will find out soon enough.” I asked her to tell me about it. She told me that Ronnie had brought the grill work back and would set it back up in the flower bed. She seemed especially concerned that I might be upset about her not telling me. While we were at lunch I asked why she seemed upset about it. She told me it was because she was supposed to have told me before and hadn’t done it. I also asked what Ronnie was to have done with the grill work. She said, “I guess paint it.” I told her I didn’t think she had painted it because I could see that it still needed painting. She accepted that and appeared not to recognize any inconsistency between what she had told me before and now.

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The Role of Humor

After being so depressed last night, Kate was herself this morning at least until it was time for us to get a bite to eat before our haircuts at 11:00. Here’s what happened. About 9:45 I went back to her office where she was working on her laptop. I told her we would need to leave in 30 minutes if we wanted to get something to eat before our haircuts. She indicated that would not be a problem. In the meantime, I went back to my computer. After 15 minutes, I went back to let her know that we had 15 minutes. Before I could say anything, she said somewhat angrily, “What do you want? You can see I’m getting ready.” Seeing that she was well on her way to being ready, I let her alone and didn’t say anything more. At 10:15 she called to me and asked, “Where are you?” She was all ready to go. Knowing that she would wait for me while I was getting my haircut, I asked if she wanted to take her iPad. She said, “And my computer too.” I could see that she didn’t have her computer; so I assumed that I needed to get it for her. Since she had been using it in her office, I went there to get it. I didn’t find it. In the meantime, I discovered that she was looking for it as well. I told her I had seen her using it in the office but didn’t see it there. We both started looking in different rooms of the house. Then she asked where her iPad was. I told her it was probably in the bedroom, but I had no luck there. Then I asked her, “You wouldn’t have taken both of them and put them in the car, would you?” Before she could answer, I went to the car to check. They were in the front seat of the car. She acted quite relieved to know they were found; however, she had already gotten pretty worked up and couldn’t immediately calm down. This was not a full-blown panic attack but her heart appeared to be racing and she was breathing more heavily than normal.

We went to Panera. On the way over I asked, “Are you back to normal now?” (This is something that occurs somewhat frequently. I ask the question, and she tells me if she is or isn’t.) She told me, “Not yet.” I sense that this routine exchange seems to facilitate her calming down IF I don’t I appear to be pushing her but simply being sympathetic. I told her I thought she would be perfectly calm by the time I brought her food to her. That didn’t happen. She told me (in a nice way) that she still wasn’t back to normal. About half way through her sandwich, she said, “I’m all right now.” We both smiled and went on with our lunch.

I dropped her off to get her haircut while I went back home to take care of a few things and to stop by Walgreens to pick up a prescription. When she finished, I took my place to have my hair shampooed. In a few minutes she approached me and indicated she wanted to get a Dr. Pepper out of the car. I gave her my key with some hesitation and gave her instructions as to where I had parked. Kate left. I felt uneasy, and Dawn said she would follow her to the car. I told her what my car looked like and where it was parked. She came back in a few minutes and said that Kate had immediately turned left as she walked out of the shop instead of going straight as I had told her. Then she couldn’t find the car, but Dawn helped her.

When I had finished, we both went to the car. I asked her for the car key. She didn’t have it. I went back in the shop and found that she had put it on the bench beside the spot where she had been sitting. When I came back with the key, she was quite relieved. She was about to panic again. She joked abut my having to put up with so much from her that sometime I was going to lose my patience and just shoot her. I smiled at her and said, “It’s not going to happen.” We both laughed. I said, “At least we can keep our humor.”

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Trip Report (Memphis)

Last night Kate and I returned home after 9 nights away. Our timing was good. Unfortunately, we found that the HVAC is not operating at all. I called the service company. They are sending someone to the house between 4:00 and 6:00 this afternoon.

This was a relaxed but busy trip. We first stopped in Nashville where we had lunch with our friends, the Davises. Then we went to Memphis where we spent three nights with our daughter and her boys. Then we drove to Helena, Arkansas for the wedding of Kate’s cousin’s granddaughter. We spent one night there. After the wedding reception we stayed three nights with our longtime friend Dorothy Hinely and her husband Mitch. We came back to Jesse’s house for one night. Yesterday morning we left for home. We stopped in Nashville to visit with Ellen in her new apartment (assisted living). She looked great but is still have difficulty with her speech. We visited for an hour and then drove on home.

All that description is a preface to my observations regarding Kate’s adjustment during the trip. First, I should say that she had a great time. We repeatedly talked about what a good time we had had seeing all the people and enjoying the scenery and the home and grounds of the Hinelys. Seeing Ellen was also a special pleasure, not to mention the excitement of the wedding and the pleasure of seeing our daughter and her boys.

The downside is that too much happened too quickly. It led to a bit more confusion for Kate though it did not seem to diminish her pleasure. Some things were similar to what we experience while at home. For example, I pointed out a stone wall near Dorothy’s house. Kate immediately said she noticed it every time we went by it. This was the first time we had driven by this area.

Other things were somewhat different. Here are a few things that were evidence of her confusion.

1. The day before the wedding and the day of the wedding we were with a lot of people we had never met. Kate got quite confused by who is who. By itself that wouldn’t be anything unusual. I had trouble with the names myself. I was surprised that she had great difficulty with her relationship with Tina, her cousin, and the relationship between Tina and the bride. She asked me repeatedly to explain this to her. More startling, was the fact that she asked me to tell her Tina’s name at one point. We had good conversations with Tina’s son and who is the father of the bride. Immediately following one of those encounters, Kate asked, “Now who is he?”

2. We were moving from one place to another so much that she couldn’t recall where we were or when or where we were going. Several times she asked if we were going home today.

3. The second morning we were at Dorothy and Mitch’s she left Dorothy and me in the kitchen after breakfast. We talked an hour or so. Then Dorothy wanted to go upstairs and get her shower, and I wanted to check on Kate. When I got upstairs, I looked in our room, but she was not there. I walked out of the room and saw Dorothy who was coming up the stairs. I looked in Dorothy’s room and noticed that Kate was in Dorothy and Mitch’s bedroom resting in their bed. We lowered our voices so as not to disturb her. She heard us and said, “You don’t have to lower your voices. I’m awake.” She continued to rest. Dorothy asked Kate if it would bother her if she went ahead and showered and dressed. Kate said no. In a few minutes Kate came into our room and got into bed. I don’t know if she ever realized that she had been in the Hinely’s bed. Dorothy and I never said anything to her. She never said anything herself. It would not surprise me if she had not realized it.

4. We stopped at Cracker Barrel for lunch yesterday. When the two of us went to the receptionist’s stand, she told us there would be a few minutes wait. I gave her our name, and she said she would call us. I told Kate and the hostess that I would be in the men’s room. Kate looked as though she were going on into the dining room. I motioned to her to wait and went to the men’s room. I figured she would walk around the store to look at the various items for sale. When I returned, I didn’t see her. Then the hostess called us. I asked if she had already seated my wife. She said that she hadn’t. We walked in the dining room and I saw Kate standing at a table waiting for me. It turns out that she had simply gone in and taken a table when I left for the men’s room. The hostess, who had planned to take us to another table, then told Kate she shouldn’t have taken a seat without going through her. As she walked away, I tapped her on the shoulder and explained that Kate has Alzheimer’s. Then she felt bad. I was afraid she was going to make a big deal about it. It was the first time I have felt the need for a card like the one that Kate’s cousin had. It said something like, “My husband has Alzheimer”s. Please understand if he says or does something that you think is out of place.” I may have to start preparations for such a card.

There were numerous other examples of confusion that occurred during the trip. I felt sad for her in that she must have felt tossed about without knowing where we were going, who we would be with, what we were going to do, how long we would stay. It must have been overwhelming.

On the other hand, I really believe she had a good time, but it makes me think I will need to be careful in planning our trip to Texas in December. I know, however, that we need (I want) to see several people before she declines any further. I may just have to take the risk.

I should also add that she did take rest breaks whenever it was possible. Even at Jesse’s, she went up to the room and stayed there for a couple of hours when she could have been downstairs with the children. That says a lot about her need to get away from situations that may be taxing her brain.

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Slight Unease in Public Gathering

Last night we went to a birthday party for our next door neighbor. It was a large gathering, perhaps as many as 150. There were many people we knew. We also go to the same church. Thus we had a lot of church members there as well as neighbors. In addition, there were other friends that we just happened to know. I had a good time. Kate did as well though she was not as enthusiastic about the event as I. At events like this, we often split up. That happened last night. I felt a little uneasy when it happened because of the large crowd and a feeling that she might feel lost when she didn’t know where I was. As it was, I believe I was the only one uneasy about being separated. On the other hand, I did get the impression that she was not enjoying herself as much as I. That is because I saw her a few times standing by herself while I was always engaged in conversation with somebody. At one point I saw her leave the room and walk down hallway toward the exit. She walked back before going very far.

Her behavior at the party makes me think that social situations like this are becoming more difficult for her. I suspect that the easy part is seeing someone, greeting them, and engaging in the usual small talk. After that, she may find it more challenging, especially when there are several people together, and she finds it difficult to process all that people are saying and respond appropriately. My assessment is that events like this are just too confusing for her.

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Little Changes

In the past I have noted things like the Deja vu experiences that I haven’t normally considered symptoms of Alzheimer’s. I am noticing more recently. For example yesterday while at lunch, she asked me if I had paid her DAR dues. I told her I hadn’t and indicated that to the best of my knowledge she was not a member of DAR. She then went on to tell me that she had at least visited one of their meetings and was impressed with the women and how smart they are and how much they knew about South Carolina. That rang a bell with me. She was thinking about AAUW. She had attended a meeting of theirs about 6-8 months ago and told me the same story.

On the way home from dinner last night, she told me she wanted to show me where she had planted her plants. I assumed she was talking about the ones we had bought this afternoon. I didn’t think she had had enough time to plant them before dinner and hadn’t seen her go outside. In fact, she was still wearing the clothes she had worn to lunch. They didn’t bear any signs of her having worked in the yard. I said, “Do you mean the plants we just bought this afternoon?” She indicated yes. When I drove in the driveway, I could see all of the plants. They were left just where we had put them when we got home. I didn’t say anything. We got out of the car, and she walked me along the drive and out toward the front of the house. It didn’t appear that she could remember where she had put them but showed me plants that she had planted yesterday or the day before. I didn’t correct her.

Last night after dinner, we got in the pool. She seemed to get quite relaxed as she moved around. She began to talk more than she normally does. Most of the things she said involved the yard and what she was doing. At one point she pointed to the neighbors Legustrums. She told me that she had been pulling leaves off of them where they were hanging over their fence and near our wall. I can’t imagine that she had done so because of the height of the shrubs. She wouldn’t have been able to reach without a ladder. Then she told me that she was clearing out the space between the neighbor’s fence and our wall so that she could put plants there. This is a bizarre idea since no one would be able to see them at all. In fact, you can’t even get to the space unless you go to the end of our wall and walk through the 3-foot space between their fence and our wall. This kind of talk seems more like that of someone with a psychotic issue. As I am noticing and learning, I am thinking that the damage done to the brain by Alzheimer’s can cause a variety of symptoms in the same way as mental illness.

I continue to see short-term memories but cannot tell if it is any worse now than several weeks ago. On Saturday I took her to get a pedicure and manicure. When I picked her up, I paid, and gave her money to give the person as a tip. She hesitated and asked the receptionist if he could give the tip to the manicurist. As we were walking out to the car, she told me she did that because she couldn’t remember who had been the manicurist.

Another symptom that I have mentioned before is she fails to notice lots of things happening around her. This includes missing visual things as well as information in conversations. It is as though all stimuli are overwhelming. One small example occurred two times in as many days. The first occurred yesterday when I put on a new shirt that is quite colorful. She has never been one to notice many of the things I wear, but this shirt should have stood out. She never said a word. I wore another similar shirt in terms of brightness today. She hasn’t said anything. Another example comes from dinner last night. We split a pasta dish called seafood gorgonzola. It had shrimp, scallops, mushrooms, and bell peppers in a gorgonzola sauce. She got full before finishing her pasta. I noticed that she had not eaten all of the mushrooms and made a comment to that effect. It was on top center of the pasta, but she could not see it. To be sure it was not a large piece, but it was large enough that she would have seen it easily before Alzheimer’s.

Before finishing this entry, I feel the need to say that we are getting along well right now. I suspect that I am becoming more accustomed to her failing short-term memory. She is getting more childlike, but we get along well except for moments when she is irritated with me. That never lasts long. We are fortunate.

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Friday Evening In Lucerne

A couple of different things happened today that point to further declines in Kate’s memory or her general mental acuity. The first occurred this morning in Interlaken as she was getting dressed. She was looking for underwear. I told her that I knew where they were. I went to one of my own packing cubes where I had put about 8 brand new pair just for this event. Unbeknownst to her, I had already put one new pair in her suitcase for her to wear earlier in the week. She thanked me but never asked any questions about why I would have her underwear with my things. In fact, she watched me open the package; so it should have been obvious that they were new. The fact that she wasn’t curious signals further decline in her condition. I have been gradually assuming responsibility for such things over a long period of time. The fact that I was taking care of her underwear just seemed to beg for more suspicion on her part.

This has been a cold and rainy day. The high was around 41 here in Lucerne and Interlaken. We checked into our hotel around 1:45. We had a long lunch in the hotel dining room and came back to the room for a while.

After Kate had finished resting, we started to leave the room to explore the Old Town. As we were about to leave, it started raining again. I asked if she really wanted to walk around in the cold and rain. She said no. She sat down in a chair and picked up a bag that she carries with her when we go out. When I didn’t show any signs of leaving, she asked about taking the suitcases. I told her we didn’t need to take them. This was a sign that she had already forgotten or misunderstood that we were not going out at all AND, furthermore, that it didn’t jell that we had only arrived in Lucerne less than two hours before.

After the rain subsided, we went out. It was cold, and she wanted to stop someplace to warm up. We went into a coffee shop where she got a Coke, and I got an espresso. While we were sitting there, she pointed to a manikin and said, “I remember that before.” I asked where she had seen it before. She said, “the last time we were here.” Then she pointed to a couple of other things she “remembered.” When we left, we walked by some buildings around the lake in the Old Town. She commented on remembering some of them from before. Finally, while we were at dinner, she pointed to two couples at a nearby table and told me she remembered them from the last time.

All of these things together give added weight to my judgment about her decline. It seems like things are moving faster now. She has been in a good humor all day. It has been leisurely; so she hasn’t had anything to frustrate her. We are enjoying ourselves.

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Day 3 In Interlaken

I am washing clothes at a laundromat and happy to report that things are going quite well. We have had some rough edges but nothing that has put a damper on the trip. It has meant that at times I have felt frustrated. Two issues: Confusion and Rushing. Kate is unable to do or figure out so many things that I am always trying to see that she gets what she needs. For example, I gave her a ticket for our train trip to Schilthorn yesterday. It has a bar code. You stick the card in a slot, and it is scanned. I showed her where to put the card, but she did it incorrectly two times. She gave it to me and asked me to do it. This is something I should have known and handled without her asking. It seems like I am invariably assuming that she can do things that she can’t do. This frustrates both of us. The hard part is that she doesn’t want my help on most things; so I try not to give it. Then we both discover that I should have helped.

I, of course, correctly attribute this to her AD, but it does not appear that she does. I am not sure this is correct. All I know is that her frustrations in moments like this are with me and not herself.

As expected, I am having to be more careful not to lose her. There have been several instances in which she was momentarily lost. She doesn’t like for me to hold her hand. That would be one way to insure that we stick together. What I do is try to walk beside her or to look back instead of ahead.

One reason that things have gone as well as they have is that we have not been under pressure to meet deadlines. For example, when we have traveled to Jungfrau and to Schilthorn we could simply take the next train or bus rather than worrying about having to be at the station on time. We have been able to do a lot, but we have done it leisurely.

As of this moment, I would say the trip is what I had wanted it to be.

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More Frustrations

Late yesterday afternoon Kate was working on her laptop trying to send online Christmas cards to a couple of friends. Like everyone who uses a computer she encountered some problems that were not a function of her own action but others that clearly were. The first was discovering that her subscription to Jacquie Lawson had expired. She didn’t know what to do; so I signed her up for another two years. I assumed that she is unlikely to be doing such things after that. If she is, we can sign up for another year or two.

The big problems she encountered were of her own making. First, she was trying to enter the recipient’s email address in a space where she should sign into her account. There was also a place to enter a password. She never realized she had made this mistake, and I did not tell her. I feel that would only depress her. The second problem involved where and how to enter the recipient’s email address and to send it. She must have worked 15 minutes trying to get Ellen Seacrest’s information entered correctly. During this time she was very frustrated. After she had sent the message, she wanted to send another card. It was like starting over. She hadn’t remembered anything about how she had done the first one. I had helped a good bit on the first one; so that partially accounts for this. She was really trying to do this by herself. After a long period of time, she gave up. She said she wasn’]t going to work on it until tomorrow and that she had reached a point at which she wanted me to help her.

This was the highest level of frustration I have seen in quite a while. It comes at a time when she is trying so hard to be independent. Earlier in the day we had been talking about my diving in too quickly to do things for her. She told me she knows I mean well, but that she feels like a child when I try to do so much for her. This topic is becoming a frequent one for us.

Today I received an email from someone with a link to a New York Times article on Alzheimer’‘s. In that article I learned of a documentary on Glen Campbell. It apparently follows him during his last musical tour (150 performances, I believe). He was diagnosed in 2011, the same year as Kate. I noticed in the article that he is now in institutional care and that during his tour he displayed behavior that I have not witnessed in Kate at all. This makes me feel that we are truly fortunate that Kate and I have had so much time to enjoy ourselves and that we still have time ahead. At the same time, stories like those of Glen Campbell make me wonder if I am blind to how little time we may have left. Right now, I believe that Kate’s decline will continue to be gradual and, perhaps, punctuated by periodic drops downward. Based on the past four years, I have a hard time believing that next summer she will be dramatically different than she is today. I hope I am correct.

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An Example of Things

This morning I came from the office to take Kate to lunch before I went to a Rotary meeting. She was on her laptop in the bedroom as I walked in. She said, “”My dental appointment is.” . . “ Then she looked at her laptop calendar and said, “”September 23 at noon.” I didn’t say anything, but, of course, September 23 is long past. She had gotten an email reminder of her appointment a day or two before the 23rd. I realized we had a conflict on that day; so I called the dentist and rescheduled for January. Sometime thereafter she ran across the appointment listed on her September calendar and let me know that she had a dental appointment on September 23. I reminded her that we had changed the appointment and that it was past the 23rd. Sometime after we got home from our cruise (last week), she said that she had an appointment on the 23. I simply told her we had changed it until January. Today when she told me once again, I didn’t say anything. I felt it was better not to tell her it was almost November and that the appointment is now in January.

The funny thing about this is that she doesn’t seem to recall that we had made the change. The more typical thing that happens is that she asks me when something is and when I tell her, she says, “”I know. You told me that before.” Sometimes she says, “”I’ve asked you that 2 or 3 times.”

I still want to reinforce that despite these memory issues we can have a good times together. I believe our quality of life is quite good even though we are both making adjustments to her changing condition.

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Even More

Several things have happened since my last post. I don’t have much time right now, but I would like to jot down some events that I may come back to later. The first involves the neighborhood association newsletter. This is something she started working on early last fall. We just got the printed newsletter back from Staples. A week ago Friday or Saturday, she asked for my help with two things. The first was to get her newsletter out. The second was to help her take care of her obligations for her grant applicants for PEO. I told her I would do so. She had a terrible time both comprehending and remembering what it is she is to do. She asked me to listen in on a phone conversation with the woman who chairs the grants committee so that I would know what she is to do. We did that. Then she got confused again and had to call her back another time. We got it straightened out. She has to write two letters of recommendation. She’s already done one and still needs to do another.

On Thursday, I reminded her that she had an appointment to get her hair done. Although I had reminded her several times, it slipped her mind. She left in the car. I got a call a short time later. She couldn’t remember exactly where the hairdresser’s salon is located. I talked her through it, and she finally recognized where she was going. This reinforced our intention to get her to use the GPS when she is going places. We both agreed that I would enter a number of places into the GPS to make it easier for her each time she needs to go someplace. I used it today to help her get to a neighbor’s house. It looks like it is not as user-friendly as she needs; so I will look for something simpler.

All these things tell me that a year from now she is bound to be in a situation where people begin to recognize her condition. I will be especially interested in the children when we are together next month.