I just came back from Kate’s room/office. She had been cleaning up. There were no clothes on the bed, and most of the clothes on the floor were gone. I said something about her cleaning up. She acknowledged it and continued her work. I decided to let her continue because she seemed content. I believed she was not going to be as interested in watching one of our recorded programs. I am now going to put the chairs back and plan to listen to some music after taking a shower.
In The Yard Again
Kate has spent a lot less time in the yard this spring than she did last spring, summer, and fall. Today seems like the old days. We both woke up early this morning (a Saturday) when we would normally sleep a little later. I was up at 5:00 and walking at 6:10. When I returned home at 7:20, Kate was working in the flower bed in the front of the house. She remained out there until 9:00 when she came in. After lunch today, she expressed an interest in going to Lowe’s to buy more plants. I took her. When we got home from Lowe’s, she went outside and remained there until almost 6:00. We went to dinner and got home about 40 minutes ago. She went back to the yard where she is pruning. While I don’t believe the pruning is necessary or that we need more plants, I am very happy that she seems to be back into yard work. She enjoys it, and it prevents boredom that occurs when she sits inside and works jigsaw puzzles on her iPad.
Problem Sleeping
I woke up at 3:16 this morning and was unable to get back to sleep. I finally got up about 4:45. My mind has been absorbed with Kate’s deteriorating condition. I am working harder to keep her entertained. I find it both challenging and discouraging. For the first time since I have been keeping this journal I find myself recognizing that she is entering that stage of Alzheimer’s that people most commonly associate with the disease. She is still able to hide her illness from most people, but she is becoming more detached from life than in the past. She hasn’t gone to church in a couple of months. I passed up the past two symphony concerts because I knew she would not be interested. I have declined a couple of other engagements because I knew it was not her thing.
More importantly for me, her whole mood has been changing over the past 2 months. I don’t see any spark of joy at anything. She can get up for certain social situations. She did that in Miami. She displayed some of that on the cruise but not much. She just doesn’t seem to be happy. I keep looking for the right word to describe her. She is listless, forlorn, bored.
At the same time, she is also more irritable with me. She snaps at me when I haven’t done anything to justify her reaction. She sees this herself I am sure. I say that because she often follows such reactions by telling me she loves me or grabbing my hand and holding it fondly.
I also see more moments in which she has imagined things that haven’t happened. Late yesterday afternoon I walked into our bedroom, and she said, “I am so angry.” I asked her why. She said because someone had said something (I don’t remember what that something was, but she was specific.) about her mother. When I questioned her further, I learned that she thought I had told her about someone who had said this about her mother. I assured her that I hadn’t said anything like that. She was puzzled and finally said, “Maybe I imagined that.” She has had several of these situations in the past week.
A Different Story of Imagining
Today as Kate and I were on the way to lunch, she said, “”Are you going to notice that woman (or was it a couple?) and her (their?) child?”I said, “”Is this somebody you have noticed before?” She gave me a disgusted look. I said, “I’m not good at remembering these things.” She answered, “”Well, you don’t pay any attention to the things I say.” I started to say something in response, but she didn’t want to “talk about it.”
Shortly after we ordered, she commented that the mother and her child were not there. She pointed to the place where they usually sit and asked me if I remembered that she had gone over to the table and told the mother how cute her child was. I told her I didn’t remember. She went on to tell me that when she told the mother that her child was cute, the mother told her she remembered her saying that. Kate said she asked, “Have I told you that before?” The woman answered, “”Two times” and seemed a bit annoyed. She said that when she told me about it, I said, “”If it happens again, I am going to go over to the woman and tell her that you have Alzheimer’s and can’t help it.” Then I said (that is, today when she told me this story), “”I wouldn’t have said that.” She said, “”You just don’t remember. You remember everything, but when it involves me, you don’t remember anything. If it’s somebody else you remember, but not when it’s me.”
While I have mentioned other occasions when she has imagined I had told her something, this is the first time I recall her having such an elaborate description of something that had happened and my reaction to it. I don’t know that this signals anything of significance, but it is something different.
Coordination Difficulties
We have nothing on our agenda today until we go to Casa Bella this evening for their Christmas dinner. After going on my walk, I asked Kate if she would like me to take her somewhere like Panera, Starbucks, or Barnes & Noble. She said she wanted to go to Lowe’s sometime. About 15 minutes ago she came into the kitchen and said she wanted to go to Lowe’s. When we got in the car, she said, “”On the way back, I want you to take me somewhere to get a muffin or something to eat.” I told her we could go to Panera now but thought she hadn’t wanted to go. I told her I would like to do that. She liked the idea only she was dressed in her sweats for yard work. I suggested a change. I came in the kitchen to write this post. In a few minutes she came in with a pair of shoes in her hands and said those were the only shoes she could find. I told her she hadn’t changed clothes. She said, “Oh.” Then she turned around to go to her room to change. This coupled with my sense that she has been unusually lethargic over the past few days seems another warning sign of impending changes.
Being Tired
Two days ago my post suggested a change for the worse in Kate’s condition. I hesitated to say that because the difference had been so minor, but in the last 24 hours I have noticed a difference in her that may confirm my original suspicions. Yesterday morning I came from the office to take her to lunch before going to Rotary. When I returned around 2:00, she was in bed. That is not something unusual except that she remained there until about 4:30. When she got up, I suggested that we go to Chalupas for dinner and reminded her that we were supposed to go to the December meeting of the music club. She looked disappointed. I told her she didn’t need to go. She accepted. She went into the family room and sat with her computer. It was not open. She just sat there. She looked very sad. I went in and sat with her on the love seat. I asked if I could do anything to help. She said, “You’re doing it.” We sat there in silence except for a few comments that I made. During this time all I could imagine was that she was discouraged about her Alzheimer’s and being bored. At one point, I reiterated that I wanted to help her but that she didn’t seem to want to talk about it. She said, “About what?” I told her that she seemed depressed. She said, “I don’t feel depressed at all. I am just tired.” I told her I felt better knowing that. We then left for Chalupas. She seemed to get along as she usually does. She was not talkative, and she seemed tired. She is often this way when she is hungry. All this seems like something that is different. She is more tired than usual.
When we got home, I showered and dressed for the music club. She got into bed. When I left, she was in bed and said that she was going to sleep. When I got home at 10:30, she was sound asleep.
This morning she was up at 6:00 and went back to bed. That much is normal. She just got up again and seems tired. Libby is coming today, and I have a lunch meeting at 11:30. I asked if she would like to go to Panera. She said she would. That was 30 minutes ago, and she just got up. I had told her there was no hurry. We’ll see how it goes today. We have a symphony concert tonight. She didn’t go last time. I wouldn’t be surprised if she didn’t go tonight.
Some Changes
I was just about to write a post that would say that a number of things have happened over the past few days that make me think Kate is making a shift downward. The first sign is that she has seemed depressed and not as upbeat. The other is confusion which I have mentioned in an earlier post today.
Just before I started I heard her call me. She wanted me to come to her office. When I got there, she said she wanted me to see her closet. Her bed had no clothing on it, nor was there any on the floor. Her closet looked beautifully organized. She thanked me. When I asked why she was thanking me, that I hadn’t done a thing. She said, “You bought me the hangers.” For over a year she has periodically asked me for more wooden hangers. Each time we have gone by Bed, Bath, and Beyond. Each time I think this is the end. Then a while later she says she wants more. I am surprised she attributed her success to me. This is something she has done on her own. She said, “I feel so much better. I can’t tell you how much better I feel.” I reinforced how much better her room looked and that I know she must feel better. This is not the first time she has cleaned up, but it never lasts too long. I am wondering if in her depression of the past few days, she hasn’t directed her attention to cleaning up which made her feel better. Whatever it is, I am grateful. It makes her feel a lot better. It makes me feel better as well.
Turning a Corner With a Little Trepidation
Earlier I posted emails that followed our visit to the Robinsons last Wednesday. In those I speculated that Kate seemed to have been worn out after the visit. During the afternoon, she closed her eyes and rested in a chair at the Robinsons while we were visiting. After we got home, she went to bed rather quickly and expressed only minimal interest in her new iPad that had arrived in the mail that day.
The next day things everything was pretty normal. For quite some time she has seemed to require more rest than she used to. Then on Saturday after we returned home from seeing a movie and getting ice cream, she got right into bed in her office. That would have been around 3:30. She remained in bed the rest of the afternoon. I had made reservations for dinner at 6:45. She had been fine with that. At 5:30 or so, I checked on her, and she said she didn’t think she wanted to go. We talked a minute, and she decided to go ahead with our plans. A few minutes after 6:00, she was still in bed. I asked if she still wanted to go. She indicated that she did. When she had not made a move to get out of bed by 6:15, she said she thought I should cancel the reservations which I did. Then I went to Panera for a sandwich and salad. Before leaving, I turned on an ETV fund raiser that featured music from the 50s and 60s. When I returned from dinner, she was up and smiling. She quickly told me about the wonderful program on TV. It was the one I had turned on for her before leaving. She was in good spirits from then on.
She got into bed early that night and told me she was waiting for me. I took my shower and then got into bed with her. She seemed especially glad to see me. She always does. She likes to be cuddled before going to sleep. This time, however, I sensed a deeper meaning.
Then yesterday after we had gotten home from Sunday school and lunch, (We did not go to church at her request.) she again went to bed and remained there for the afternoon. I was watching the final round of the PGA championship; so I didn’t rush her. Finally, around 6:30 I asked if she wanted to go out for something to eat. She said she did. When we got home, she again got into bed after changing for the night. Again, she indicated she would be waiting for me. When I got into bed and held her, she said (as she has done a number of other times), “This is the best part of the day.”
She still does not want to talk about how she is feeling, but it seems like she is seeing herself drifting into a new stage, and it concerns her. It seems like she is telling me with her behavior, “Richard, I am drifting away. I love you.” In the past I have wondered if she would ever reach a point that she would say something like this. I believe I would if I were in her position. Her way, however, is to express her appreciation without ever specifically and literally connecting it to her Alzheimer’s. She does say how much I do for her, that she couldn’t live without me, is so glad she has me, how much she loves me, etc.
I am beginning to think that this is the beginning of that stage of AD that we all imagine when the person who has it no longer connects with the world around her, doesn’t put up a front, and doesn’t even recognize her condition. Although Kate and I are quick to count our blessings, I can’t deny how much it hurts to watch her drift away like this. It also makes me very doubtful that our cruise next May and the trip to Chautauqua next June will come about. The cruise is not that big a deal, but Chautauqua has been such a special place for us that I don’t want to let that go easily.
Change In Irritability?
Lately I have noticed what may be an increase in Kate’s irritability. Here is an example from this morning. This is our third day at Chautauqua, and she put on the same clothes she has worn at least the other 2 days. Last night I had reminded her that her suitcase was in the closet. Earlier this morning I put it beside the chest of drawers in our bedroom where she would see it. When I saw that she was wearing the same clothes, I said something about it. She did not take offense. I said, “Here is your suitcase.” She said sternly, “Put it on the bed.” Then she added, “How am I supposed to get it there (meaning by the chest)?”
Something else that could become a problem is a habit she has developed. It has two variations. The first is simply a very audible yawn. This is most common in the morning after she gets out of bed. It also occurs when she is tired or bored. While we were waiting for the opera to begin last night, she started yawning with the accompanying audible yawn. I said something to her about how loud she was. She was very irritated with me. I don’t know where this leads, but I fear that it will become something that is a bother to people around us. I remember that Sharon Billings said she carried a card with her to give to servers and others in restaurants and other places letting them know that her husband had Alzheimer’s. I may need this in the future.
Since beginning this post, Kate has changed her top, but is still wearing the same slacks. I cut her a couple of pieces of zucchini bread. She ate a banana and is now resting beside me on the sofa. This continues to be a pattern. It is as though getting up and eating something wears her out. I would think that her desire to rest relates to the strain of being outside the confines of her familiar territory; however, she does the same thing at home. The difference is that at home she always has the yard in which she can busy herself.
All these things continue to cause me to wonder if coming back to Chautauqua next summer is a good idea whether for one week or two. I really want to come back. She enjoys being here, and it seems easier for me to guide her into more things to do than at home. So far I have been unsuccessful in trying to get her to walk around the grounds. That seems like it would be something she would enjoy, but she reacts quickly and negatively when I suggest it.
More on Weakening Inhibitions
Yesterday I commented on what I usually term Kate’s growing childlike condition. A better way of describing much of her behavior is to say she seems to have lowered her inhibitions. So far this has not presented a problem, but I can see that it might do so in the future. Here are two examples. On Sunday while we were seated on the front row at our combined adult Sunday school class, she was quite tickled at the performances of two of our associate pastors who were reading and acting out the parts of devils in C. S. Lewis’s The Screwtape Letters. Her laughter was quite audible but never a problem. Once again, however, this has not been characteristic of her in the past. The second example occurred last night at a reception for the symphony. The MC was introducing a number of people to congratulate for their contributions in making for another successful season. When he got to our Executive Director Kate yelled out “Go, Peggy.” This response was not loud enough to be noticed by more than a few immediately around us, but, once again, this is not normal behavior for her. Besides that she is not close to Peggy at all.
On another front this morning we had another example of her memory’s failing. Today we are going to Nashville to pick up our youngest grandchild, Taylor. Around 7:30, I told her that we would leave around 9:30. About an hour later, I noted that we had not discussed where Taylor would sleep and that he had slept in her office the last time he was here. She said she would clean up the office so that he could do so again. I noticed a short time later that she was in her office cleaning up. Then I went to get gas in the car and to buy iced tea and lemonade from Chick-fil-A. When I returned at 8:40, she was outside pruning shrubbery along the driveway. I stopped and reminded her we would be leaving in about 45 minutes. She asked where we were going. I told her, “To pick up Taylor in Nashville.” She said, “Oh, yeah.” Then she told me she wanted to stay out another 30 minutes before coming in to get ready. When I came inside and went to her office, I noticed that she had not cleaned it up. It is an absolute mess. Fortunately, we don’t have to leave as early as I had planned. We can leave an hour later and still have time for lunch and to get to the airport on time. I simply report this incident as another illustration of what things are like.
One other thing I should mention is that although Kate seems less worried or bothered by her condition, there are some situations that do frustrate her. One of those occurred as we were getting ready for last night’s reception. I had noticed that although I had bought her new clothes early in the spring, she has not been wearing them. She asked me where they were, and I told her they were in the front of the closet. When I went to get them, I noticed that there were only 2 of 5 pants there and a couple of tops. She could tell I was frustrated over their not being there and said tearfully, “I just can’t do anything right.” She is pretty much correct about this. And this occurs during a period of time when she is so desirous of being able to do things for herself. This is the first time in a while that I have heard her express such a sentiment. It serves to remind me that the person with Alzheimers knows she is failing and finds it frustrating and no doubt frightening. This current struggle for a way to retain her independence is illustrated by her wanting a calendar for the refrigerator. That is something she mentioned to me several times before we got it at Staples over the weekend. It seems to me a desperate attempt to regain control of her life. And, of course, she and I know it is a losing battle. What a tragedy this is.
