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Confusion About Packing

Shortly after writing my last entry (4:33 pm), Kate seemed to be getting a little panicked. I decided it wasn’t worth it to attempt to go either to a special dinner or to the choral concert tonight. I went back to her to her room and suggested that we just get something simple and skip making an evening of it. I don’t remember exactly how I said it, but I said something that I thought would suggest the only thing she had to do was pack for our trip. She was greatly relieved. I went back to our bedroom and started gathering together my things and packing them. About 20 minutes ago, I went back to her office and saw that she was working on her laptop and had not started packing at all. I told her I thought she was packing and that is why we weren’t going to out for dinner or the concert. She looked surprised. I asked if she wanted me to put her suitcase on the bed for her. She did, and I left to finish up some of my things. Realizing that she was getting panicked, I told her it might make it easier if she just laid out the things she would like to take with her and packed them in the morning.

In a while, she called me to her office. When I got to the back, I discovered that she had picked out 7 or 8 outfits. I told her that was perfect. I left again to tend to my stuff. In a little while she called me again. I went back to her office. She showed me the very same things she had shown me before. I did not say that she had already done this. I simply said they were perfect. Then she asked me when we were leaving (meaning for Texas). I told her tomorrow as I have done each time she has asked.

She has been getting along so well lately that I have been surprised about her present behavior and condition. It makes me feel once again that the upcoming cruise will have to be one that minimizes tight deadlines and keeps things as simple as possible. I am still optimistic that we can do this on the cruise. A bigger consideration at the moment is whether I have arranged too rigid a schedule while we are in Texas.

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Memphis: Alone Time

This morning Kate and I were awake at 7:15. I brought her some orange juice and a breakfast bar around 7:45 and told her the family was just now coming to the kitchen. She thought I was asking her to come on downstairs and asked, “I’ll be able to see them later, won’t I?” I told her yes. She remained in bed using her laptop. She remained there until close to 11:00. She came downstairs and started editing photos on her laptop. Sometime around noon, she went back upstairs. I just checked in on her and found that she was resting in bed.

It is interesting how much she enjoys being with everyone (I think), but how often she removes herself to rest. I am not sure whether this occurs because she is simply tired or because she isn’t interacting with everyone and gets bored or feels left out. For the most part, each person has been on his/her own today. Jesse has been busy the entire day preparing food for our Thanksgiving dinner. I have remained in the kitchen most of that time working on my iPad and talking with Jesse and Greg. Ron has been playing games on the TV (football, basketball and hockey). Randy has been upstairs almost the entire morning. He is downstairs right now working on his computer. It could be that Kate has simply gotten tired of working on photos. It may be taxing on her. It could also be that she is having a very low-key experience with the family since no one is giving her any special attention. Of course, she hasn’t taken any time in the kitchen except when Jesse gave her a slice of banana nut bread and some fresh blueberries and raspberries.

Yesterday she was hurt when we were with the Robinsons in Nashville. We had had a good visit. Near the time to leave, she broke into the conversation and said, “Wait a minute, the three of you have done all the talking. Let me say something.” When we got in the car, she seemed depressed. We didn’t chat about it, but she offered several comments. She mentioned something that I have noticed before but did not notice yesterday. She said Angie and Tom looked at me and addressed all or most of their comments to me. She also said that everybody (even Ellen, her best friend) does this. She said, “I am not dumb.” meaning that she has things to say and contribute to our discussions as much as everyone else. I apologized to her because I had not been sensitive to that and that I would try to direct more conversation her way. I really do believe that my own personality is such that I quickly engage in conversation with other people and don’t think as much about whether or not she is being included. This is something I need to work on. I might think that the behavior of the Robinsons is a result of their knowing that Kate has Alzheimer’s, but the same pattern appears to be true with other people who have no idea of her illness. It may have something to do with the kinds of comments that she makes. Often they don’t tie into anything that we are discussing at the moment. It could also be that there is so little that she can offer to many of our conversations that she is more retiring and gets ignored. At any rate, it is a problem and one that I hope I can offset but fear that this will become a more common pattern.

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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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Time for the Wedding

We spent a delightful morning and early afternoon with Tina driving to a beautiful park and having a picnic lunch. After dropping Her off at her place, I decided to check out the directions to the reception. We are back at our B&B and will stay here for a while before going to the wedding at 4:00.

Kate has been tired most of the day. The primary indicator has been that she has been rather quiet with Tina. She has been almost completely silent with me. She has acted like she is very bored. Earlier today when we were going to get Tina, she asked me where we were going. I told her, and she asked, ”And then are we going home?” I reminded her that we would go to the wedding and then to home of the groom’s parents for the reception. She seemed disappointed that I didn’t say that we were going home.

While on the drive to reception, we approached a rock wall similar to those in New England. I pointed it out to Kate. She said, “I notice it every time we drive by it.” This is the first time we had been anywhere close to this spot. Another Deja vu experience.

When we sat down in the living area of our B&B, she asked me where we were going from here. I told her to the wedding and then to the reception. She made no response. She is lying down beside me on the sofa resting. I plan for us to remain here for another 10-15 minutes. Then we will go on to the wedding. Her being so tired makes me wonder about our cruise for next May. I think going all that way to Europe for a cruise may not make any sense if she needs to rest most of the time.

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Sleepy This Morning

Kate and I are staying in a B&B in Arkansas, where we are staying in connection with a wedding of Kate’s cousin’s granddaughter this afternoon at 4:00. We got to bed around 10:30 last night. Kate has had a hard time getting up. I started waking her up just before 8:00. I finally went down to breakfast at 8:30. I came back, and she was still in bed. A while ago I told her we needed to leave.

She is just now getting up. Now I need to finish getting ready myself, but I wanted to note that I am observing more signs of her being worn out. This seems to happen when we are out of town and stay up later than usual. She also didn’t have time to rest much yesterday afternoon although she did take a 20-minute nap/rest.

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Visit with Jesse

We had a nice visit with Jesse the past three nights. Kate had a wonderful time. We enjoyed daily mornings at Otherlands where we got a bagel and muffins along with coffee and tea while we worked on our iPads. It is an active place that has a welcoming atmosphere.

We have also eaten two nice meals at lunch. We have always found interesting places to eat in Memphis.

Of course, there are the usual  signs of Kate’s AD, but that hasn’t kept us from enjoying ourselves.

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Revealing Comment

Kate and I are in Memphis sitting at a table at Otherlands, a popular coffee shop. She is working a jigsaw puzzle on her iPad. I am checking in on Facebook and email and responding. She just looked up and me and said, “You going to have to take out an ad in the paper saying that  “my wife needs a friend.” The loss of close friends is clearly a problem, one I have mentioned before, but this “out-of-the blue” comment illustrates her own feeling about not having anyone she can call a friend – at least one who is in town. I am glad that we were able to have lunch with Ann and Jeff when we passed through Nashville two days ago. It will also be nice to spend a few days with Dorothy and Mitch Hinely this coming weekend. In addition, the time spent with Jesse and her boys has been therapeutic as well. I am thinking about making more of an effort to travel here during the week in the months ahead.

I feel that we may only have as little as a year before it may not make much of a difference; so I should capitalize on the period of time when it matters most to her.

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A Couple of Experiences on the Road

We left Knoxville for Memphis yesterday. We stopped for lunch in Nashville with Ann and Jeff Davis. Early in the conversation, I asked them to tell us about their recent  trip to Italy. They had told us a little when Kate said she wanted to tell them about the wedding we are going to this weekend. It is the wedding of a granddaugher of her cousin Tina. It seemed a little abrupt as the Davises had said so little about their trip. I said, “We just finding out about their trip.” She said she thought they were through. I just let her go on with her explanation of the wedding.

When she told the story, it was somewhat disjointed. She first said she had to back up and tell them about her cousin Tina. It was a challenge for her to explain and it took her a while. I helped her with a couple of things. I think she gets frustrated with so much conversation by other people, and she wants to be involved as well. But she doesn’t have as large a set of things she can talk about. A little later in the conversation she said somewhat sternly that she wanted to a chance to say something.

As we left the restaurant, she asked, “What was this place again?” I told her, and she said, “I knew that.” Of course, she really did know that. She simply couldn’t remember what it was until she was reminded of the name.

When we got to Memphis, we went into a McDonalds for something to drink. While I went to the men’s room, she went to a table occupied by a staff member and sat with her. When I got back she was engaging in a conversation with the woman. This is something else that she might not have done years ago.

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Thoughts Niagara-on-the-Lake and Chautauqua

As we come to the end of our week at Chautauqua, we are a bit sad to leave. I don’t recall ever feeling any other way. This is clearly the most special place for us. Despite losing Kate three times, I have made arrangements to come back next year. This time for two weeks. I am influenced by several factors. First, this year’s visit has gone well. Second, Roger Rosenblatt will once again host a week with his “friends.” This is Kate’s favorite week. We have been here twice before when he has hosted this week. Third, lodging space is going fast, and I found a very convenient place a short distance from the Amp and across the street from the Brick Walk Café. In addition, it is on the first floor. Finally, I am able to purchase trip insurance that would I cover the cost of the two weeks if we are unable to make it.

Chautauqua will be our last holdout. I do not plan to cease coming until it really is impossible to do so. One of the things that will influence me in that decision is how to handle trips to the restrooms. That would be difficult in airports when she is unable to take care of herself. The same would be on the grounds here at Chautauqua.

Right now I can’t predict what she will be like next summer or in May when we are booked for a cruise from Rome to Amsterdam. At this point, I have found the risks involved in planning for such things are minimal. I suspect I will have a much better sense by the end of February when I have to make my next decision about the cruise. I can cancel without any financial cost before that time.

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Lost a Third Time

I lost Kate once again, but this is the time that has concerned me most because I believe it signals a new stage in her decline. We had been to the Brick Walk Café to get her a Dr. Pepper. Then we went to the Maple Group Real Estate to arrange for next year’s visit to Chautauqua. From there we were going to watch the Scott Roselle Talk Show. As we passed by our apartment, I told Kate that I would like to get some papers up to the room and that I would be right back. When I got back, she wasn’t there. I looked all around and couldn’t find her. I went back to the Brick Walk Café, to Roselle’s show, in the library, around the Amp, as well as the streets around the inn and Bestor Plaza. While I was looking, I ran into a friend from Long Island. He offered to help me look for her. I told him he needn’t do that but he did anyway and stayed in touch by text. After an hour, I called the Chautauqua police and asked for their help. I gave him a description of her and what she was wearing. He said he would send someone to meet me at Heather’s Inn. In five minutes or so an officer arrived and took the same information from me. He said there would be two of them looking for her. He asked me to stay around the inn in case she showed up here. In about 20-25 minutes I got a call from the police saying they had found her and that they were taking her to the inn. I looked over there and saw her getting out of a security golf cart. I went over and thanked him. Kate did not seem flustered. I suspect that might have been a little different had the police not been there. She told the officer that I know how bad she is with directions. I gave her a hug, and we went upstairs to our apartment. Neither of us said anything about where she had been, how long she had been gone, or what had happened. We both understood just about all we needed to know. I did say, “I’ll bet you got hot.” She had been walking for an hour and a half. Later I asked her about her walking away. She did not want to talk about it. My interpretation is that she doesn’t really know what happened or why.

The troublesome aspect of this is that this Is the first time she has gotten lost by walking away, and it happened so quickly. In prior situations it has occurred because she did not follow me or she simply got lost because she forgot where she was supposed to go. I fear that this means she could mean we are reaching a point where I cannot trust that she will stay in a given location. This afternoon I did take a chance by leaving her at the apartment while I went to a session in which she had no interest. I was gone a little less than an hour. Before leaving I asked her to promise me she would not go anywhere. It was clear she understood why I said that and that this morning’s experience was one she didn’t want to relive. She said, “Believe me; I’m not going anywhere.” Of course, she may have already forgotten this experience. I know she will have forgotten by tomorrow morning.