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Good times at CHQ

We arrived at Chautauqua last evening just in time to walk to The Amphitheater for the night’s entertainment. A Swedish group performed the music of ABBA whose music was featured in the movie and stage production of Mamma Mia. We enjoyed it, Kate especially. I told her I had never seen her express the same degree of enthusiasm for the Knoxville Symphony.

We got to bed later than usual because the performance wasn’t over until nearly 10:00. This was three nights in a row. It was hard for Kate to get up. It was 9:00 before she got to breakfast. After breakfast, she went back up to the room to rest some more. I have noticed that over the past year or so she has been sleeping more. Usually that involves going to bed as early as 8:00; so the change in the schedule really affects her.

It has been a good day here. She has enjoyed herself but has been hot and is resting in bed right now. We had lunch with friends from Long Island and ended up spending most of the afternoon with them. I noticed that Kate gives some misinformation or fails to pick up on things in our conversations. I know this is one of those things that will only get worse.

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Another Good Father’s Day

Yesterday was a good day for everyone. Taylor slept until after 10:00 am, and Kate worked in the yard most of the morning. I read the paper, caught up on email, and wrote an entry in this journal. Taylor and I played in the pool for about an hour. We had lunch at Panera’s and got ice cream at Marble Slab afterwards. We came back home where Kate and Taylor worked puzzles for a while before we went back in the pool until time for dinner. We came home and watched the Spurs beat the Heat to win the NBA championship for the second time in a row. Last year we watched the final game in Jackson Hole where we celebrated our 50th anniversary.

Kate did not say anything about its being Father’s Day, but she did realize when Jesse called, and later we talked with Kevin. As we drove back from dinner, she said, “I hope you’ve had a nice birthday.” I told her that I get to celebrate twice this week, today for Father’s Day and Tuesday for my birthday. I am not sure she understood. When we got into bed last night, she said, “Happy Birthday.” The only sadness I feel about her is that it is another sign of her continuing deterioration.

A couple of other things are illustrative of her condition. She asked me several times yesterday what time we would leave for Charlotte today (to take Taylor to the airport). I wouldn’t be surprised if she doesn’t ask again this morning.

As we were about to leave Panera’s yesterday, she asked if we could drive home the other way to show Taylor. I told her we could. After we had gone a short way, Taylor said, “How far is it?” She said it was not far, just a little bit farther than the usual way. (I watched the odometer and noticed that it is 2 miles farther.) When we passed Panera’s, Taylor asked, “Did we just go in a circle?” Kate answered, “Well, . . . you might say that.” Then she asked me if that is correct. I told her it was. What was interesting was that Taylor at age 11 very quickly observed that we just went in a circle, but she had not and had to check with me to confirm it.

I continue to be pleased that she enjoys the grandchildren so much and will definitely be thinking about some kind of plans for us to get together over the next year and next summer.

Our yard is looking better all the time. This is another thing from which she can derive satisfaction. I love it because it gives her something productive to do, and I love the beauty she has created. She doesn’t always do things the way I would (if I did them at all), but overall she makes the yard look more beautiful. That makes both of us happy.

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Fun with the Texas Grandson

Now that the twins have gone we are down to one grandson, but the fun continues. Kate has always, and continues, to enjoy being around the grandchildren. This year is no different. We had a good day with Taylor yesterday. We swam in the morning, went to Chick-fil-A for lunch, saw a movie, had ice cream at Marble Slab, came back home for another swim, went to dinner, and topped off the day with a game of Battle which he won.

The enjoyment that Kate has gotten from the grandchildren is making me think more seriously of planning something for next summer even if we don’t have them one at a time. The reason I am not considering having them one at a time is that I am not sure that I can handle both Kate and the grandchildren. On the other hand, if she is still as easy to care for as she is now, we could do it another summer.

We loved the movie yesterday. At least I did. Taylor said he thought it was interesting. Kate wasn’t taken with it at all. It was Million Dollar Arm. It is about a sports agent who brings a couple of guys from India to the US to learn how to pitch. It is based on a true story, but Kate did not realize it until the end when they showed the real people. I had read her the description of the movie before going, but not surprisingly she didn’t get the part about the “true” part. I never thought to emphasize that to her. In fact, I didn’t think of that as a critical part. It was just a good story. This is the kind of thing that happens every day. I try to prepare her for things, but I just can’t anticipate what is going on in her mind. Nevertheless, I always try to think what I could have done to avoid confusion. It is similar to her panic when she couldn’t find me at Great Wolf the other day. I never thought she would be confused about my whereabouts, or I would have clearly told her I was going with the grandchildren and would be back. I thought she heard the conversation and saw me leave. It is a sign that she is not even listening much of the time. It must be such a strain trying to follow everything that is said and going on. She just tunes out.

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More Good Times

Yesterday was Memorial Day; so the office was closed. I did not go to the Y because of my back. I did take a 2-mile walk in the neighborhood. Kate and Ellen went to lunch . Then they went to a nursery before going to a movie at The Flick. I went to lunch at Panera and then to the Acura dealer to have the car serviced. I then went to the store and bought a pot roast, the fixings for spaghetti sauce, and tilapia. We had the fish last night before going to a neighborhood gathering to welcome the new neighbors on our street.

While there Kate got in a conversation with two women. One of them asked if she didn’t get bitten by bugs while working in the yard. Kate told her not very much and that she used Listerine to keep them away. They acted surprised. She told them it worked for her. This is something I have ignored for quite a while. I was thinking that she got the idea by hearing that it was good for bites not as a preventive measure and that she had simply misunderstood. At any rate, I let this go because it annoys her when I challenge her on things like this. I felt awkward with the neighbors because I didn’t want them to believe it would work for them and learn later that it does not.

Kate was quite sociable. She went her way, and I went mine. We both had a good time. When we got back home she joked with me that I was not the only one who could socialize. She jokes like this frequently now, something she didn’t do before.

This morning we went to breakfast with the Y group. She had a good time, especially as it was ending. We walked out with a couple of people and were talking with them outside the restaurant when we saw two other people we know. We must have talked with them for 30 minutes. Larry asked her if she had been to Texas lately. We said yes, and Kate said we went to Fort Worth for one day. We did not go to Fort Worth on this trip. We did go there in December. In that case we went for 2 days. There are lots of examples like this in which the listener would have no basis for questioning what she says. This is another way that Alzheimer’s can remain hidden for so long. Then another church friend and his caregiver, Judy, came out of the pancake house. We then engaged in conversation with them for another 15-20 minutes. Kate spoke with Judy about our getting together for lunch one day. This is something I see happening more often nowadays. In the past she might not have done it or at least not been as enthusiastic about it.

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She surprises me sometimes.

All of the entries I give point to the many things that are symptoms of Kate’s Alzheimer’s. This is unfair in painting the whole picture. In many ways she is herself. Once in a while she really surprises me. That happened this morning when I saw her rinsing out a yogurt container. This is something about which she has been sloppy. It’s not that she doesn’t do it; it is that she does it but leaves traces of yogurt which concern me because we attract insects inside and have the potential for doing the same in the recycling bin outside in the garage. I was made especially sensitive about that recently when I saw a swarm of gnat-like insects around the recycling. We are also getting gnats in the kitchen.

I don’t know that I paid special attention to see that she had sufficiently rinsed the yogurt container, but when she had finished, she said, “I saw you watching me to see if I rinsed the yogurt container.” I have never said the first word to her about my doing this, but I have watched in the past, and I also come behind her and re-rinse the containers she has already rinsed. She has obviously picked up on this.

We are enjoying an unusual Sunday morning at home today. She told me last night that she was thinking of not going to church today. She re-confirmed that this morning. I decided to follow suit as there was no regular Sunday school this morning.

We have been active the past few days. Friday night we went to a play at the Bijou. They performed Young Frankenstein by Mel Brooks. It was a wild comedy. It was not exactly our kind of thing, but we do share a love for theater. We will continue to attend as many theater performances as we can. I am optimistic that we will have a couple of more years to enjoy them.

Yesterday afternoon we went to lunch at a small café on Millwood and then drove to The Flick planning to see Belle. It turns out they were sold out for the 2:30 movie; so we bought tickets for the 5:00 show. We came back home in the interim where I solved a syncing problem involving my iPad and computer. We went back to the show and enjoyed it. It was the best movie we have seen in quite a while. Since we were so close to Casa Bella, we went there for dinner following the movie.

I hope our activity is something that would be encouraging to anyone else in our situation. We have had almost 3 ½ good years since Kate’s diagnosis, and we continue to enjoy life. We’re going to keep it up as long as we can.

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Sydney

We are at the end of our month-long trip to New Zealand and Sydney. We have had a wonderful time. It was everything I had wanted it to be. My decision to do this trip on our own was a wise one. It was also good that we planned to do it leisurely and not worry about trying to do everything.

I have had my hands full on the trip. It is especially hard to maintain any order. For example, when we arrived at a location, she would pull her clothes out of her suitcase and throw them on the floor. I am sure she was looking for something specific, but it makes it difficult to find things later on if they are scattered about the room.

Going through check-ins is a bit of a problem. She generally does not understand what she is supposed to do even when I give an explanation. When we were going through customs in Auckland, one person was supposed to walk through a screening device while the person behind waited behind a white line painted on the floor. I went through first to show her what to do. Instead of stopping at the line, she followed right behind me. This messed up my screening; so I had to go back and do it again.  After I got through the line, it turned out that she didn’t understand what she needed to do. We had to stop at a point while the scanner did a scan of our faces. She couldn’t get this right. There was no way for me to go back and help her. I had to get a customs official to go around and help her.

Something similar happened when we were taking a train someplace. She put ticket in the slot and then tried to walk through a different turnstile. These are little things, but it creates a lot for one person to handle. This is the kind of thing I had never thought about before. I am sure I will get used to it.

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Ups and Downs and Special Moments

The past few days Dad has had his ups and downs. This past Friday, he called Larry and me. He sounded coherent, but he said he didn’t know where he was. As usual, I assured him he was at Mountain Valley and that I would be there in the afternoon. He said he was all right. He seemed quite lucid at dinner. I had a good visit.

Yesterday when I arrived, he was up and in his wheel chair but sleeping. He woke up right away when I spoke to him. Before going to the dining room we went back to his room where I put a couple of bananas in his top drawer. Then he needed to go to the bathroom. He asked me if the birthday party was still on. I told him it was and asked why he asked. He said, he thought it supposed to have happened but didn’t. I told him we had 3 weeks to go. He also said something about how good it was to see me and that I hadn’t been out all week. I told him I had been there every day. He said he couldn’t remember my being there. I joked with him that he was giving me an easy out now. I could come only once a week and he wouldn’t know the difference.

I brought him a couple of hot dogs and some yogurt. He ate it all and enjoyed it. As we sat together, I told him that we might consider my interviewing him at his party so that he didn’t have to try to remember any prepared remarks. He seemed to like that, and I started a trial interview. He repeated what a good life he has had. We talked a little about the ups and downs of life. I asked him what the most difficult time of his life had been. He thought a moment and said, “I guess when my father left us.” I said, “Tell me more about that.” He said, “Well, I guess I was ashamed.” This is the very first time I have ever heard him say anything this self-revelatory. I have long suspected that he was hurt by his father’s departure from the family and knew that he had explored trying to find him when I was about 12 years old.

I asked him about any school teachers that he recalled. That led to his mentioning somebody in his junior high school who had taken an interest in him. He said it was in the 8th grade that he developed a personality. He went on to say that he thought his personality throughout his adult life and today was shaped by those days in the 8th grade.

As we talked he asked me, “Do you think I’m getting senile?” I said, “no, I wouldn’t say that. I would say that your stroke has affected your brain and that makes you confused sometimes and causes you to have some delusions.” Then he said, “I’m not ashamed of my dementia.” I told him there was no reason to be ashamed, that many people suffered from dementia.

Our conversation went on perhaps a total of 40 minutes or so before we went back to his room. We both felt good. He commented again on how glad he was that I had come out. When I tucked him into bed, he thanked me again and told me that I had taken good care of him. I told him we had done it together. He said, “Well, you’ve done three-fourths of it.” I told him, “We have walked a long way on this road, and we’ll walk the rest of the way together.” I left feeling very good.

Last night around 10:30, he called and asked if I were coming to pick him up. He thought it was time for the party. I reminded him that we have 3 more weeks. Then he asked, “Is Elizabeth here?” Elizabeth is an Eastern Star friend who is driving up from Gainesville, Florida, for the party. So he continues to show more confusion than is normal for him. Once again, I think this is going to become common in the days ahead. I am thankful for the special moments like yesterday afternoon and will try to remember them rather than the down times.

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Good times

Last night we had dinner at Emilia. It was a nice evening. We had a good meal, and a man we know from church played the piano. The night before I had reviewed our itinerary and lodging for our trip to New Zealand in February. We both got excited about this trip. I finally decided to travel on our own and travel by car within the country. I think this will work out much better than having to meet a schedule for a group as we would have done with OAT.

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Great Family Time

Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.

I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.

This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.

By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.

Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.

One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.

I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.

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Things For Which I Am Thankful

I realize that much of my conversation may have a negative tone to it and want to present the other side for a change. It’s not that something especially good has happened to us in the last day or two but that overall we have much for which we are grateful. Perhaps I was prompted by a conversation I had with our banker the other day. I initiated steps to become power of attorney for Kate’s financial accounts and explained to the banker that she has AD. Last week I spoke with him for the first time in 6 months or more. He asked how we were doing. I told him that all-in-all we were doing quite well. Then I explained that one of the benefits of knowing early about her AD enabled us to place more emphasis on our relationship and making the most of the time we have together. Even with the natural frustrations that I experience with Kate’s inability to do or remember things, I have become decidedly more patient and understanding. That has made all the difference in our relationship. Even though we have had a strong relationship in the past, it is at its strongest now.

Beyond this, we are not under the financial pressures that might prevent our doing many of the things we enjoy. In addition, her diagnosis came at a time when I am able to take time away from my business and invest more personal time Kate.

When we consider everything, we are incredibly blessed, and we recognize it.