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A Moment of Realization

Although I have made it clear that Kate’s short term memory continues to decline, and I am looking at 2015 as a turning point to a more serious stage of Kate’s AD; sometimes there are moments that shake you just a little. Such a moment occurred yesterday afternoon.

Following our lunch, we were in Belk’s when I received a call from Ellen that she was locked out of her car and needed to get to a 3:00 pm appointment. I told her we would be there to pick her up and take her home to get a key. (First, I should say that Kate and I had gone to see Selma the day before. Because it covered events that were especially relevant for our generation, it had an impact on both of us. On the drive home, we talked about the movie and our memory of racism as we were growing up. Once home, Kate went to her computer and did some checking on the actual events as she often does after we have seen a movie.)

As we were driving to pick up Ellen, the radio was tuned to NPR. They did a segment in which they mentioned Selma. Then Kate said, “When are we going to see it?” I hesitated a moment, and she repeated her question. I told her we had seen it “yesterday.” She then hesitated a moment as though the significance of her memory lapse has startled her as well. Then she said, “Well, I remember my birthday luncheon” that had been the day before.

It is not unusual for Kate to forget things so quickly. This happens all the time, even during the same day or even after a few moments. The difference in this particular lapse was that the movie had had such an impact, we had talked about it, and she had explored the events on her computer after getting home. I took that as a signal that the AD is entering a more serious stage.

I want to add that after I had told her we had seen the movie, she thought about it a moment and then remembered that we had seen the movie. She specifically pointed out a number of things she had remembered correctly.

This morning before going to the kitchen to fix my breakfast, I reminded her that today would be a busy day for us. She asked what we were doing. I told her we would go to lunch and then to a memorial service for one of her PEO sisters at 1:00 and then go directly to a 90th birthday party for another mutual friend. Then tonight we are going to see Broadway Bound. Before going for my walk, I told her that our friends, the Robinsons, were not going to be able to attend the Live at The Met performance of The Merry Widow after all because the tickets were sold out. We had originally planned to go ourselves, but we have the memorial service and birthday party. While on my walk, I got a call from Kate saying that Ellen had called and invited us to go see The Merry Widow with her this afternoon. I told her we were going to the memorial service and to the birthday party. She simply didn’t remember. This kind of thing is happening all the time.

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The Good Thing Is . . .

This past Saturday night Kate and I went to a wedding. This was the first time that two of my staff members had been with Kate since I told them about her Alzheimer’s in July or August. This morning as the three of us talked about the wedding, I asked them if they would have known about Kate’s illness if I had not told them. They said absolutely not. They recounted conversations they had had with her and how comfortably she had handled herself.

That led me to tell them something that I had been thinking about lately and have mentioned in my journal on previous occasions (I think). One of the really good things about Alzheimer’s is that there is such a long period between the time the patient and her husband recognize the problems and the point at which others notice. Clearly this isn’t true for everyone. I still remember that over two years ago this summer our pastor invited me to lunch and asked if Kate were all right. He made it clear that someone had noticed something different about Kate. It is equally obvious that in more extended conversations like those of Saturday night that even people who know can’t detect any signs.

It is also worth noting that in a conversation with Kevin this past Friday morning, he told me that he still would not know if I hadn’t told Jesse and him earlier this year. He hasn’t seen her, but he has had phone conversations some of which have been lengthy. I consider this aspect of Alzheimer’s to be a blessing for the patient and her husband.

The realization of this positive aspect of the disease has made me think a little more about the need or desire to tell others about her condition. I have been telling a few people this year and have thought of telling others. In particular, I have thought about telling Bruce Morton, my old college roommate. I have hesitated because we both know Nancy Hardwick whose husband, Charlie, has dementia. They were both classmates of ours at TCU. About 10 days ago, Bruce asked me if I knew anything about how Charlie was doing. When we last saw him at our 50th class reunion, I knew from Nancy but could not tell that he had dementia. This made me think that Bruce might be in touch with Nancy. Since is originally from Fort Worth and has both Fort Worth and TCU ties in common with us, I would not want her to know before Kate’s family. That has made me wonder if the time has come to tell them. We will be in Fort Worth the weekend before Thanksgiving. I had already decided I didn’t want them to know before the visit but thought that after the visit might be the right time. Now I am thinking there is no reason to tell them until later. We will see in time how I handle this.

Jigsaw Puzzling

Several times lately Kate has said she loves her iPad. That is quite a shift since I got it for her a couple of years ago. She hardly used it for a year, but more recently she has gotten into it. I believe the major attraction has been the ability to work jigsaw puzzles on it. It appears to be one of the first things she does in the morning, and one of the last things she does before going to bed. It is not an obsession, but I believe it is a result of its being something, like pruning, that she is able to do and to do at her own pace. No one is pushing her.

At the moment she is working a puzzle at a time when I believe she should be getting ready to get her hair cut. We have arranged for her to see a new hairdresser since her former one is no longer able to do her hair. It has been over 4 weeks since she has had her hair done. At any rate, I know she is eager to get her hair done, but she is still working on the iPad. Whoops, I just went back to the bedroom to check on her. She is up. The bed is made. She must be getting her clothes on.

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Frustrating Experience

This morning I looked at my calendar and noticed that I had volunteered to call three members of church today to wish them Happy Birthday. Kate had three people, I think, to call on Monday. I had given her the cards with the calling information on them that morning. I had forgotten to follow up until now. When I got home from the Y and a stop by the office, I asked Kate if she had made the calls. She had forgotten. Then she got angry with herself. I felt bad for her. I should have remembered to remind her that afternoon. Now she is suffering for it. She asked that I remind her to make the calls later today.

I am wondering how this is going to work out. I had signed us up for the committee that makes these calls because I thought it might be something that she could do and enjoy. It may turn out that she doesn’t do them at all.

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Various Signs of Alzheimer’s

At 8:20 this morning, Kate walked into the family room dressed for working in the yard and said sternly (as if in a huff), “”I’m going outside. If I’m not ready when you need to go (to church) then go ahead without me.” Thirty minutes before I wanted to leave, I went outside to let her know how much time she had. When she came inside, she picked up her clothes on our bed and said, “I put these here so you would know that I had picked out the clothes for church.” When it was time to leave, I went to her bathroom to check on her. She spoke rather harshly and told me to leave her alone. I heard her ask, “”Where’s my makeup?” In a few minutes she came out and indicated she was ready. Then she said that she didn’t have any make up on except for her powder.

For the third time in as many weeks, she attended my Sunday school class. I showed two videos. One was a segment from 60 Minutes that featured Mercy Ships. Then I showed one about the work of Samaritan’s Purse in Sudan where they are helping to provide clean water. After the class Kate mentioned two times how good the class was. She really liked it.

We went to the worship service in which one of our young associate pastors preached. This was his last Sunday before leaving for Louisiana where he is assuming the position of head pastor in a Presbyterian church there. He did a very nice job. Kate’s assessment of him was glowing. She said she thought he was the best preacher we have ever had. This positive reaction to people is not new and is what I sometimes describe as a childlike response. She just seems to be very impressed with other people’s skills.

Finally, we went to lunch at Chalupes. She raved about the food and the consistency from visit to visit.

I take both the huffy emotional behavior with me and the positive reaction to my lesson, Jonathan, and her lunch as a function of her Alzheimer’s. She wasn’t this way before.

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Continued Problem Getting Ready

Last night we were going out to eat. As I was getting ready, I thought about Kate’s new clothes that we bought several months ago and that she has not been wearing. (I think she simply doesn’t remember she has them.) I called to her and went to her bathroom where she was starting to get ready. When I called she answered with irritation. She wanted to know what I wanted. Before I could begin to explain, I could see that she was breathing more heavily than normal and appeared stressed. She went on to say she just wanted to be ready on time and that she was having to work so hard to please me. She walked away from me. I spoke to her in a gentle voice so as not to further aggravate her and told her that I was just thinking she might want to see if her new clothes would be something she would want to wear. Then I left to get ready myself. When she had dressed, it turns out that she found a new dress and jacket. She looked great. She was also in a good humor.

This experience was the most striking example of the stress she experiences when we are going places. It was more than just a panic attack this time. It was almost as if she were frightened of me as if I was going to abuse her. This frightened me. The last thing I want is for her to think of me as her master. I will write more later to explain that earlier in the day we had had an experience buying more plants in which I had been bothered, and she picked up on it.

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Wilderness at the Smokies with Jesse

Jesse and the twins arrived from Mt. Pleasant on Wednesday, June 11. The next day we all went to Nashville where we spent the night at Wilderness at the Smokies, an indoor water park. It was a great time for all. The boys, as usual, got along quite well, and they loved all the things to do involving water. Kate was especially getting to watch her three grandsons having such a wonderful time.

I did not get to talk extensively with Jesse regarding her impressions of Kate. This would be the first time she has been with Kate since I informed her of Kate’s Alzheimer’s earlier this year. A couple of things happened that illustrate how she is doing at this time. First of all, the first night Jesse was with us in Knoxville she had been playing Battle with the boys when she asked me to take her hand while she went to the bathroom. She never came back. When I checked on her, she had gone to bed. She told me she was all right, just tired. I feel sure that in the past she would have excused herself and said good night.

At Wilderness the first day, we were all together when the 3 boys and I went to ride a raft that runs through a long tube. In retrospect I believe she didn’t realize what we were doing. When I got back, Jesse told me she was walking around. I went to where Jesse said she was. When I reached her, she was in a mild panic. She didn’t know where I was and had been looking all over for me. This is another example of her being so normal in many respects that I treat her as normal. I should have made it clear where I was going and that I would come back to her when we finished.

The next day (yesterday) Jesse, Kate and I had left the table at which we had been sitting to watch the twins on one of the water attractions. After a while, Kate started to ask me if I would get her cup of water from our table. Then she said she would do it. I let her do so although I was concerned that she might not remember where it was. After a few minutes I started walking to the table when I saw that she was walking back in our direction without the cup. I offered to get the cup for her.

Despite incidents like these, I am still encouraged that she and I are able to enjoy these times together and that the problems so far are ones that don’t significantly diminish the joy we have always had. At the same time, I am not naïve to the fact that the time is coming when the problems will come to be a bigger issue for us.

Looking ahead I can’t help wondering about next summer when it would be the twins turn to travel to New York with us. I have already decided that if we make the trip at all, I will want Jesse to join us. Seeing Ron and Randy with Taylor this week has raised another possibility. Taylor would be scheduled to make the NYC trip the following summer (2016). Because I am doubtful about Kate’s condition at that time, I think it might be good to take the three of them to NYC, with Jesse, of course, and perhaps with Rachel or Kevin. I intend to broach this subject with Jesse soon. I may also bring it up to Kevin.

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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.

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Childlike Behavior

Among the subtle changes that have and are taking place with Kate are the various behaviors that I call “childlike.” These are so subtle that I doubt that anyone else would even notice if they occurred in their presence. One of those that I can’t describe is a look of detachment like the innocence of a child. These often occur when she gets some kind of soil on her clothing or spills something on a piece of furniture or the floor or loses an earring. It is as though it simply doesn’t matter or that she doesn’t realize how significant it can be. One of those involves some jade jewelry that she bought in New Zealand. I haven’t seen them since shortly after our return home. She wore one of the necklaces several times and then couldn’t find it. By now she has forgotten she has them. I suspect they are in her room somewhere but neither of us would know where.

Another example would be her “little game” of counting the number of people who are walking along the sidewalk or crossing the street. As we drive, I will hear her say, “One.” Then she will say, “Three.” She often counts the cars at an adult video store. Over the weekend, she said she was going to start counting the times we pass McDonald’s when there are no cars at the drive through. The first time I ever noticed anything like this was when she started announcing the price of gas at the various gas stations we passed. I think this came after some mention about my being observant. She made a deliberate effort to be more observant herself.

I have mentioned before that she gets more irritated with me than she has ever been in our married life. When she is irritated, however, she is not really nasty. She seems more like a little child.

Another thing I notice is that she delights in joking with me, something that she has never done before.

The downside of all this is that it occurs because of deterioration in her brain. The part of her brain that controls her actions is weakening, and she is allowing herself to express herself in ways that she didn’t use to do. I have mentioned before that she is less attentive to the way she dresses and the way her hair looks. She usually does not brush her hair before we go out. I do this for her, and she is appreciative not annoyed that I am taking over this aspect of her life. On the other hand, she is annoyed by my helping in other ways. She asked me over the weekend to let her respond to people before I do. She said this as a reaction to my answering emails or making phone calls to people who had contacted both of us. I have done this because she doesn’t feel the need to respond right away, and then she forgets about doing it at all.

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Fifty-First Anniversary

Tomorrow we will celebrate our 51st anniversary. We hadn’t planned to do is anything special, but earlier this week I decided it might be nice to drive to Asheville. I got ticket to a play. I have also made lunch reservations at a restaurant that we like. We’ll return tomorrow night.

Today we had lunch with Mark and Katherine Harrington. I had told Mark about Kate’s Alzheimer’s a few weeks ago and couldn’t help but wonder if he noticed anything different about her. I could believe not. The one thing that I think is different is that she speaks more boldly and confidently and more than she used to do. She also interrupts others speaking more frequently than in the past. It is quite difficultl for me to express precisely what this difference is, but it seems like she is working harder to make herself heard. There is also a bit of child-like enthusiasm for lots of things.

One of my problems lately is adjusting to her wearing some of my clothes while she is working in the yard. In particular she wears some of my tee shirts. Once they have gotten dirty, the stains don’t come out of them. This is one of those situations I have to be careful about. I have chosen not to say anything because she gets defensive or she jumps on me for being so compulsive and overly concerned about my property.

She is working hard to be on time and sometimes senses pressure from me when I haven’t done anything at all. That happened today when I came home a little early for our lunch with the Harringtons. I did this because I feared she would still be working out in the yard if I came home just in time for us to leave. At any rate, she ended up feeling pressure to get ready quickly. I hadn’t done anything to rush her because I thought we had plenty of time. At one point, she told me that it wouldn’t hurt the Harringtons if we were five minutes late. As it turns out we were on time, but she needled me because she thought I was getting fidgety over her not being ready. I confess that frequently I do get fidgety. This wasn’t one of those times.

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Why don’t people notice?

This is really a rhetorical question to which I know the answer. I still find it interesting that with so many signs of problems Kate successfully conceals her Alzheimer’s from most people. The reason is that other people see such a small part of her behavior. The time they are with her involves ordinary social conversation that she is able to handle as well now as she could in the past. I, on the other hand, am with her so much and get to see much more than others. This morning, for example, she let me know that she had called Ellen to arrange lunch and go to see a movie this afternoon. Although I had told her yesterday that the movie does not start until 3:00, she had forgotten. That would mean a long time between lunch and the movie. She called Ellen, and they worked out plans to do something in between lunch and the movie. Had I not intervened, they would have worked out things on the spot.

I told Kate she had an hour until Ellen was to pick her up. She said she was coming in anyway because of the heat and humidity. Thirty minutes later she was still outside. I told her she now had less than 30 minutes until Ellen arrived. She came in and started to get ready. She did a good job getting ready. Ellen came almost 15 minutes early; so she only had to wait 5-7 minutes before Kate was ready. This is part of a daily occurrence. Nothing too serious, and Ellen would probably never have connected it to Alzheimer’s if Kate hadn’t told her. Even then she may not have noticed anything. Most things are simply unseen by others.