New Patterns

I have previously noted on several occasions that Kate will ask me if she can pull leaves outside as we approach the house after being away from home. This started as something only occasional. It is now becoming a regular pattern. Normally, she asks, “Can I pull some leaves?” After I tell her she can, she frequently asks, “Can I use the clippers?” Often she doesn’t say the word for clippers. She just closes and opens her right hand. I know what she means and tell her it’s all right. After that, usually as we have pulled in the driveway or garage, she says either, “Where can I start?” or “Where do you want me to start?” or just “Front or back.?” I sometimes tell her she can start anywhere she wants. Sometimes I know that we will be going out soon and don’t want her to get so hot that she needs a shower. In those cases, I sometimes suggest she choose a shady spot or even point out a shady spot if I see one. Having settled on where she will start doesn’t mean that is what she does because her memory doesn’t permit her to remember. She seems to gravitate mostly to the two flower beds along the driveway or the flower beds in the front of the house.

Strange Behavior

Kate came in from outside a few minutes ago. She stopped about 12-15 feet in front of me with a puzzled look on her face and said, “Something’s going on.” Then she didn’t say anything. I stood up from the sofa and walked over to her. I tried to get her to explain. She struggled to find words. I asked if it involved somebody else. She didn’t answer. I asked if it involved her. (Something she said made me think that she was worried about herself or something about herself.) She said yes. I asked if she was afraid. She said yes. Then she said that maybe she just imagined it. I couldn’t get anything more. She was quite hot from having been outside. I asked if she wanted to cool off. She said she did and wanted to go get something to eat. We had just eaten about an hour earlier; so I knew she probably was not hungry. I also know from past experience that she sometimes says she wants something to eat or drink and then promptly forgets it. It did turn out, however, that she wanted to get out of the house.

On several afternoons when she has wanted to “get out of the house,” I have mentioned going to Barnes & Noble. In each instance, she has said no and reacted as though it had been a silly suggestion. That has led me to take her back to Panera. It is often hot in the afternoon there; so I was looking for another place. Figuring that she simply didn’t remember that B&N has a cafe and tables where we could camp out the way we do at Panera, I brought her to B&N without telling her where I was going. She never raised a question even upon arrival. We just got out of the car and walked in with our cups and iPads and my laptop. I picked out a table, and she sat down. I got each of us an iced tea. We have been here over an hour, and she hasn’t gotten up from her seat. She is still working puzzles on the iPad. I will come back again. It gives us a good alternative to Panera.

More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.

Symptoms of a Decline

Since my post the other day about the possibility of Kate’s experiencing a sharper decline than I have observed in the past, I have thought a little more about what it is that makes me feel that way. I obviously felt strong enough to start filling out a claim form for long-term care insurance, to call the insurance company for some answers, to contact an in-home agency, and sign a contract for services beginning in September.

My answer is this. It isn’t a single behavior that makes me feel this way. It is a combination of little ones. I do believe the pruning of our neighbor’s shrub was an important sign, but it is also expressed in more signs of confusion than usual. She has been acknowledging that she can’t remember things. She seems a little more childlike. She is regularly accepting my offer to get her night clothes for her. It is also the increasing problem with salivation and lack of concern for her appearance. I also noticed two other things yesterday. She spit on the carpet at Panera. When we came home, it was raining. She had several used paper napkins in her hand. She just threw them on the drive back of the garage.

I hope, of course, that I am wrong about getting a signal that she is on a steeper decline, but these signs make me thing she is.

Something New

I went in the pool this afternoon and left Kate in our bedroom where she was working on her iPad. She told me she was going to take a nap. When I came in 40 minutes later, I didn’t see her in the bedroom and assumed she must have gone in her room for a nap, something that is not unusual.

After my shower, I went to her room to check on her. She wasn’t there. I went outside and didn’t see her. I came back in the house for another look. Still no sign of her. I went back outside. Coming back from the side of the house opposite from our driveway, I saw her on the other side of the driveway. When I got close, I could see that she was actually in the neighbor’s yard and was pulling leaves and branches off of a large shrub that is 7-8′ tall. She had removed all the leaves off of about a third of the shrub. I told her that was a shrub that belonged to the neighbors. She said she knew but that it needed trimming. She commented that now it looked better. When we got back from dinner, I called the neighbor who was very understanding as I expected she would be. We had a nice conversation. I told her I would try to see that it doesn’t happen again but that it could be hard to prevent unless I am outside with her all the time. Again, she was very understanding and said not to worry about it.

Movies, A Thing of the Past?

For several months, I have observed that Kate has not enjoyed movies the way she used to. That has led me to try safer movies, those that I thought had the best chance of pleasing her. A good example of this was taking her to see Disney’s Beauty and the Beast. She didn’t enjoy it.

Today we went to see Maudie. This is a movie without sex and violence or foul language. It is a love story about a woman with a physical handicap. To me, the personality of the woman suggested that she may have had mental challenges as well. She leaves her family to make her own life and takes a position as a live-in housekeeper for a man with his own personality problems and is a seller of fish and a variety of other things. They eventually fall in love and get married. Maud becomes an artist who is discovered by a journalist who brings her a bit of fame. Even after watching it, I felt that it contains many elements that would make it appealing to Kate.

As I always do, I wondered how Kate was reacting to the movie throughout. It is a slow-moving film. I knew that could be a problem, but I also thought it might make it easier to understand the plot. It was clear that did not happen. On the way home, she said she could not follow the film.

This was an emotional experience for me in two ways. First, the movie brings out a lot of emotions. I am sure there were others besides me who at the end had tears in their eyes. Second, I was so saddened to hear that she had not enjoyed a movie I had like so well and hoped she would enjoy that I simply choked up and had a hard time telling her that I liked it and why
For a while, I have been saying that it looks like we are coming to the end of movie watching, something that has been a significant part of our lives for a good part of our marriage, especially since we’ve become empty nesters. Today’s experience just reinforces my belief/fear. I am not giving up on movies entirely just yet, but I will continue to be very selective in the ones we see.

Pulling Leaves, Plants and Strange Behavior

We are now approaching the middle of the summer, and we have not made a trip to Lowe’s for plants. Last year and the year before we were making such trips almost twice weekly. The last time Kate expressed an interest was during the winter. We went there but found they didn’t have much and said they would start getting things in late February. On several occasions, I have asked Kate if she would like to go. She has said with a groan, “Not now.” I have even suggested that she might want to put some plants in the pots beside the spa as well as some others for the patio and front porch. She has unenthusiastically agreed that it would be nice but has never picked up it so as to take action. I take this as a critical sign in the progression of her illness. It is equivalent to her giving up her computer (email, Facebook, and finally, her photobooks). Fortunately, she is still pulling leaves although our recent weather has meant that she comes in after being outside for a short time. It also means for showers and changes of clothes.

I have also made a change. I am no longer suggesting that she wear work clothes outside. I just let her wear whatever she has on when she decides to pull leaves.

I have mentioned several strange behaviors of Kate’s, but I don’t think I have mentioned that she has been taking paper napkins from the restaurants we frequent. At first, she was doing this to have them in the car when she might need something for her salivation problem. Now, however, she is tearing them up (along with the paper towels she has used in the house) and put them in a basket in the garage. It is similar to her collecting hickory nuts and putting them in the basket on our island. The big difference is that she is using the nuts as a decorative effect. I didn’t realize what she was doing at first. I thought she was tearing up napkins to put in her compost. When checked the compost, I didn’t find any. I do find an occasional Dr. Pepper can and yogurt containers as well as the tops of the containers. I haven’t asked her to explain why she is doing this. She wouldn’t remember. On at least two occasions, I have been walking out the door of the kitchen on the way to the car when she starts to take a yogurt container to the compost. In those instances, I have pointed out that they go in recycling and not the compost.

The combination of the increasing problems she is having with her puzzles on the iPad and the heat is that she seems to be more restless (behaviorally speaking). What I mean is that she spends a little time at Panera until her frustration pushes her to go home. Then she works outside for a little while until she gets hot. That is exactly what has happened this morning. We were at Panera for a little less than an hour between 9:00 and 10:00. We went home where she pulled leaves. She came in and took a shower. She came into the family room where I was writing this post for my journal and said, “Are you coming?” She was ready to go back to Panera. That is where we are right now. It is 11:19 a.m. I think we will just work a while on our devices until around noon when we will have lunch. Then I imagine we will go back home. I feel sure she will pull leaves a while until we are back here since we don’t have any other plans until 5:00 when we have a visitation for a former neighbor.

In the car on the way over here, she pointed to her cup that was sitting in the cupholder and motioned to me as a way of asking if it were all right for her to take a drink. When we parked at Panera, she did the same thing only this time she was asking if she should take her cup into Panera, something we do every time we come here.

54th Anniversary

Kate and I returned from Asheville in time for lunch. When we got home, she immediately asked if she could pull leaves and use the clippers. She didn’t even come inside. She was out as long as she often is. I would say about an hour and a half. She came in and took a shower. She then announced that she was ready to go. I asked her where she would like to go. She didn’t know. I asked if she would like to stay at home a while and work on her iPad. She said yes and went to the bedroom where she stayed about 30 minutes.

While she was in the bedroom, I took my laptop to her and played a video of pictures from our 54 years. I had posted it on Facebook. She loved seeing the pictures. She indicated she was tired and asked if she could rest. I told her she could. Then she promptly came into the family room with her iPad. Before working on it, she lay down a few minutes and then went back to the bedroom. Then she asked if she could go to the front yard. I told her that would be fine. She has been out there about 45 minutes. She is happy.

The trip to Asheville is a bonus. Last year at this time, I never expected to be back this year. It was a good trip although Kate didn’t express much enthusiasm for anything except a chamber concert yesterday afternoon. I was quite surprised and pleased by that. Kate did enjoy being at the Haywood Park Hotel. It was clear that she did not remember it at all. She took it all in as though it were the first time there

I was somewhat uneasy at night. I am aware that she got up during the night when I did not hear her. To the best of my knowledge, she did not try to leave the room except the first night. The security latch prevented her from leaving. I heard her and got up and brought her back to bed. Each morning when she got up, she looked quite confused. I suspect I may see more of that this weekend when we are in Lubbock.

I continue to believe Kate is going through a transition to a much deeper stage in her illness. Time, of course, will tell. I am still planning on our going to Chautauqua in July. That is only 5 weeks away. I imagine things will be quite different there. I fear that she won’t be as interested in attending the lectures session as she usually is. In fact, last year she didn’t attend most of the afternoon lectures. I went alone. I am not sure about doing that this year. I am getting much less comfortable about leaving her alone.

Taking stock of where we are

As I mentioned before, my moods change with Kate’s moods and behavior. At the moment, I am in a somewhat sad mood. This relates directly to what I perceive as a shift that Kate is making to the kind of behavior that we commonly associate with someone who has Alzheimer’s. She seems more distant than usual. This is difficult to tell because she has exhibited signs of distance from things going on around her for a long time. It just seems like they are even “deeper” or more distant than in the past. I find this understandable since she has so little short-term memory, her long-term memory is also poor, and she is unable to comprehend so much of what goes on around her (TV, movies, plays, conversation).

My feelings right now are at least partially associated with a couple of things that happened during the week. The first involved my brother Larry. He came to Knoxville last Sunday afternoon. We had dinner together. The next morning we met him at Panera. The three of us talked for a while. Then we came back to the house where Kate remained outside to pull leaves while Larry and I talked. I left to attend Rotary. Larry was preparing to leave for his farm but went outside to chat with Kate before leaving. When I got home after Rotary, I asked her when Larry left. She didn’t know. I probed a bit, but she was unable to tell me anything. She did not appear to remember that he had been here.

The next day we visited our friends the Davises in Nashville before visiting with Ellen. I had told Kate several times over the previous two or three days that we would be going to see the Davises. I reminded her the morning we left. We talked about it in the car as we left. When we arrived at their house, she didn’t know where we were and asked, “What now?” I told her we would go inside and visit with the Davises. She said, “Tell me their names again.” I did. We went inside and talked for about an hour. Then we went to lunch for another hour. When we got in the car to leave, she told me how much she enjoyed the visit. Then she asked me to tell her their names again. A little later she asked, “What is your brother’s name again?”

Today we went to a Live in HD at The Met production of Der Rosenkavalier. This was Rene Fleming’s last Met performance. It was outstanding, but Kate wanted to leave at the end of the first act which we did. I had noticed she seemed bored. She yawned audibly two or three times during the first act. Although she was not very loud, the people in front and in back of us could certainly hear her.

We have now seen quite a few operas. It was the Live in HD productions that really generated her interest in opera. Today it made no difference. I knew that she was tired going in, but I suspect it was more than being tired. It was a complex comic opera. I know she must have been confused and tuned out. I fear this is just the beginning of things to come.

More Signs of Sundowning?

Since returning from dinner, Kate and I have been sitting in the family room. She has been working puzzles on her iPad. I have been watching the news. She has had a little problem taking her pills at night. It seems to cause a little reflux. I decided to divide her pills so that she takes half now and the other half a little later.

After she took them she got up and went to her room. She came out in a few minutes with another top over the one she had been wearing. She indicated she was ready. I asked her, “For what?” She told me, “Anything.” I told her I thought she was going to get ready for bed. She said it was too early. Then she went to our bedroom and said, “I’m just going to lie down in bedroom with my iPad for a while.”

I walked back to take my medicine. As I was leaving the room, she called my name and pointed to her iPad. I didn’t know what she was communicating and walked over to her bedside. She asked, “Should I take it with me?” I told her we weren’t going anywhere now. Then she asked me what she should do with her iPad. She asked if she could just put it down beside the bed as she usually does. I told her that would be fine

This is another occurrence of her acting as though we are going someplace and/or that we have spoken about doing something when nothing of the sort has happened.