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More Frustrations

Late yesterday afternoon Kate was working on her laptop trying to send online Christmas cards to a couple of friends. Like everyone who uses a computer she encountered some problems that were not a function of her own action but others that clearly were. The first was discovering that her subscription to Jacquie Lawson had expired. She didn’t know what to do; so I signed her up for another two years. I assumed that she is unlikely to be doing such things after that. If she is, we can sign up for another year or two.

The big problems she encountered were of her own making. First, she was trying to enter the recipient’s email address in a space where she should sign into her account. There was also a place to enter a password. She never realized she had made this mistake, and I did not tell her. I feel that would only depress her. The second problem involved where and how to enter the recipient’s email address and to send it. She must have worked 15 minutes trying to get Ellen Seacrest’s information entered correctly. During this time she was very frustrated. After she had sent the message, she wanted to send another card. It was like starting over. She hadn’t remembered anything about how she had done the first one. I had helped a good bit on the first one; so that partially accounts for this. She was really trying to do this by herself. After a long period of time, she gave up. She said she wasn’]t going to work on it until tomorrow and that she had reached a point at which she wanted me to help her.

This was the highest level of frustration I have seen in quite a while. It comes at a time when she is trying so hard to be independent. Earlier in the day we had been talking about my diving in too quickly to do things for her. She told me she knows I mean well, but that she feels like a child when I try to do so much for her. This topic is becoming a frequent one for us.

Today I received an email from someone with a link to a New York Times article on Alzheimer’‘s. In that article I learned of a documentary on Glen Campbell. It apparently follows him during his last musical tour (150 performances, I believe). He was diagnosed in 2011, the same year as Kate. I noticed in the article that he is now in institutional care and that during his tour he displayed behavior that I have not witnessed in Kate at all. This makes me feel that we are truly fortunate that Kate and I have had so much time to enjoy ourselves and that we still have time ahead. At the same time, stories like those of Glen Campbell make me wonder if I am blind to how little time we may have left. Right now, I believe that Kate’s decline will continue to be gradual and, perhaps, punctuated by periodic drops downward. Based on the past four years, I have a hard time believing that next summer she will be dramatically different than she is today. I hope I am correct.

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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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Mini-Crisis

Although Ellen was surprised about Kate’s diagnosis, she did say that looking back she could see signs. She is now seeing more signs. Yesterday, she came by to pick up Kate for a visitation of a friend who died last week. Kate was not ready when she arrived. I invited her in. Kate was in something of a mild panic over not being able to find any slacks that fit her. A couple of times she called to me for help. She was also making noises that have become commonplace. It is hard to describe. They are something of a groan. Before Ellen had arrived, I had mentioned that I thought she was dressed too casually. She changed. She got a jacket that didn’t quite match what she was wearing. I suggested she might try something else. Then she found something that was better but not just right. I let her go out with it.

We agreed that they would call me when they were finished, and I would meet them for dinner. When they got back to the house, we chatted outside on the patio for a few minutes. When Kate went inside to change clothes, Ellen told me that the day before, Ellen reminded her that they needed to call me even though they had just done so only minutes before. She said that Kate said, “”My short-term memory is really going.”

The biggest crisis we have had occurred last night. Kate is hosting her PEO meeting this morning. This was a last-minute change because the person who was to host was unable to do it. Kate’s immediate thought when she was asked to do it was the yard. She always wants to put the emphasis on the yard. I’m not saying this is a bad thing, but that she then forgets to do things on the inside of the house that need doing. I tried to encourage her to address some of the things to no avail. The bottom line is that she still did not have everything ready late yesterday afternoon. We went over to Panera’ for a quick dinner. I didn’t notice anything special until we were nearly finished. She had a depressed expression on her face. She would look down and put her hand to her head. My interpretation is that she was thinking about all the things she had to do, how difficult it is for her to do them, and how little time she had. This is something I have observed before. I know that she doesn’t like for me to talk. She just wants to be left on her own to get hold of herself. When I asked if she were ready to leave, she said she needed a little more time to calm down. We took another 5-10 minutes, and she said she was ready.

We had planned to go to Lowe’s for a few more plants, something I thought was crazy since it was about 7:00 pm. I asked her if she wanted to go home first. She said yes. We sat on the love seat in the family room and cuddled without talking. From the time we got up to leave Panera’s she was shaking like she was cold. This seemed to ease after we sat for a while at home. She said she was ready to go to Lowe’s.

When we got there, she was shivering and wandered down the aisles looking for plants. When she picked up a plant that was quite different from what she had said she wanted, I told her this was not like what she had said she wanted. She broke into tears and said, “”There’s not going to be anything left that I can do.” I held her a few moments. Then she continued to look for plants even though she was still continuing to cry.

At this point it was clear to me that she is frightened about what is happening to her and what still lies ahead. In the past few months, it had seemed to me that she had entered a phase that was a little more like people are referring to when they say, “At least she doesn’t know.” I have been adamant about saying that Alzheimer’s patients do in fact know for a long time before they don’t know. I was beginning to think that Kate was getting to that point.

It is also clear that Kate believes she is not as far along as she is, but she is aware of her increasing deterioration in memory and function.

So how do feel this morning. Not good. I feel a little tense. I feel as though my heart is beating faster than it usually does. It tears me up to see her go through this. If only there were some way to avoid going through this. I know there are harder days ahead. I am now wondering if the hardest ones are in this phase where the decline is becoming more noticeable, and she has to think about this like someone going to the gas chamber or electric chair. Because I see it as frightening to her, it is frightening to me.

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Frustrations, Annoyance, No Way to Discuss

We just got home from lunch and running several errands. The last trip was to Lowe’s where we had an unpleasant experience that I fear may be a hint of things to come. The start of the story is that last week I took Kate to get some new clothes. We are going to more receptions that require dressy casual attire, and she has gained weight and can’t get into many of her old clothes. We spent a total of $2,200. My general style is to take great care with the things I buy. That has never been here style but it is getting worse with the Alzheimer’s. Today she put on one of the tops she had bought. After we came home from getting her hair cut this morning, I went to the office for an hour. When I got home, I found her pruning shrubs in the backyard. She was still wearing the new top. I resisted saying anything.

This afternoon we went to Lowe’s to check on delivery of compost. While I was checking, she was picking up plants. The first thing I saw was dirt from the plants on her new top. I said something to her about it and started to dust it off when she got upset. We went ahead and got in the car. On the way home, she talked about various ways she was going to be able to get new plants. She started with a taxi. Then she talked about walking to Lowe’s and bringing the plants back home in one of their “grocery carts.” Then she said she was going to buy her own car. When we got home, I tried to tell her that I didn’t intend to stop her from buying plants that I just wanted to get her blouse cleaned off. She said she just didn’t understand. I stopped trying to explain. It is just no use.

This is the second time I recall that I said something that hurt her. The first was on the New Zealand trip. We were browsing in a gift shop when she wanted to buy a small tin box with a picture of a cat on the top. This was early in the trip; so I told her she might want to think about her priorities in things she would want over the whole time we would be gone because we wouldn’t have room to carry everything that she might want. I didn’t mean at all that she couldn’t buy the box. She didn’t buy it, but she was unhappy and told me she couldn’t understand why I wouldn’t let her buy it. Not only that but she brought it up several other times in the days following. It obviously was important to her.

I find myself frustrated by things, but I can’t say anything or I will hurt her. She, on the other hand, feels annoyed with me, and feels I am controlling her life. She brings this up periodically and is proud to point out the things she knows and can do. I have always said that people with Alzheimer’s know at the beginning that they are not able to do things or remember things the way they should. I still believe this, but I think she is beginning to enter the stage where she believes she is far more capable than she is. That is hard for me to take.

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Driver’s License and ATM Card Again

I just got home from the hospital visiting Dad. The first thing Kate said was that she couldn’t find her driver’s license or ATM card. Of course, we may find them. She said, “I don’t know, Richard.” I took that as an expression of personal frustration over her decline. We’re going to have to figure out a way to keep them in a single location. I thought we had done that this time by putting them in the console of her car between the driver’s and passenger’s seat.

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In A Quandary

It is now 2 ½ hours before we are having 3 other couples over for a light dinner. We are doing this informally. We hope the weather will cooperate and permit us to eat outside. If not, we’ll simply adjourn to the family room. Despite the informality, we have a good bit to do. I cooked pork tenderloin last night. We are going to thaw some shrimp and have shrimp cocktail. In addition, we will have assorted cheeses, fruit, and caprese salad. All of these are things we need to have in order by the time everyone arrives. At the moment Kate is outside working on plants. Some of this work has been pruning behind the shrubs on the side of the house where no one can see anything. How should I respond? Do I push her? That will annoy her. Do I let her go and just let the chips fall where they may? It is the latter that I am tending to do more and more often. I do believe we are very near the time when I will simply do everything except what she may want to do to make her feel a part. I don’t mean tonight although that is where we are headed. Thus far she has done very little except for the yard. It looks great, and I appreciate her work. However, I consider it secondary to the things that must be done to serve dinner.

Another issue is her weight. She loves eating snacks and treats like Wendy’s Frosties, candies, etc. She is frustrated over her weight gain. I am only 10-12 pounds heavier than she, and we found on our trip to South America that she can comfortably wear my jeans. I can understand she wants to enjoy herself while she stills knows and understands what is going on around her; however, I also know that she is troubled by her weight. She decided to go to Weight Watchers before we went to South America. She decided to start after our return. She went to one meeting and never returned. Again I have decided for the moment that I will not put any pressure on her. I feel like she needs to enjoy herself.

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Reflections on our trip to South America

It has been almost 2 months since my last post. That is because of our recent trip to Peru (Lima, Cusco, and Machu Picchu) and Ecuador (Quito, the Amazon, and the Galapagos). Before the trip we were busy getting ready. We were gone 3 weeks and a day. Since our return, we have spent a lot of time getting back to normal living. Our pictures are mostly organized.

On the whole, the trip went very well – better than I might have predicted. I am, of course, talking about Kate’s AD. I did, however, find it challenging. We were on a fast-paced schedule that required getting up early, meeting the group on time, and hiking on unlevel surfaces. I had to keep my eye on her and hold her hand a lot. In addition, I not only had to get myself ready, I also had to make sure she got ready and had the things she needed. I didn’t always succeed in this endeavor. In particular, I should have taken greater control over the packing of her bag. She left without some of the basics like sufficient underwear and slacks. She ended up wearing some of my underwear, jeans, and a pair of nylon pants I had gotten for our trip to Jackson Hole in June.

I found it especially difficult traveling with Kate in a group. She has never had a good sense of time, but now she is almost completely devoid of any sense of time. The reason this was especially frustrating on the trip was the many appointed times the group was to meet. This meant that I had to make sure she was ready. Beyond that there were lots of other challenges like getting her wet suit on and off, getting her flippers on, helping her with snorkeling. Ultimately, she gave up on snorkeling, and I went by myself or stayed behind with her. I must admit that this was not our best snorkeling experience. The waves stirred up the sand, and we were never in truly clear water.

Since being back at home, she has had her own frustrations. She has been working a collage of pictures to share with our group of travelers. It is something she should have finished in a week, but she still hasn’t got it done even though several times she has indicated that she is practically finished.

A few moments ago, she told me, “I am losing it.” We hugged each other quietly for a few moments. Then she said, “Well, let’s move on.” She doesn’t want to dwell on her decline, but I know she worries more and more. As I have said in the past, I don’t believe there are many people who would ever suspect she has AD. That is because most encounters with people are periodic and involve a set of programmed comments. We ask, “How are you?” We answer, “Fine.” “What have you been doing?” “We just got back from a fantastic trip to South America.” And so on.

Yesterday Kate had lunch with  Ellen. As Kate’s closest friend in town, Ellen should suspect, but I doubt that she does. The ones who most likely to have suspected something are her hair dresser who has been aware of the confusion Kate has had about appointments and has missed a number. She has another church friend who mentioned something to our pastor almost a year ago. Beyond these people I doubt that anyone else would know.

Last week I noticed that she seemed to be a little depressed. One evening as we were talking on the patio, I told her I knew that she had had a frustrating week. She acknowledged that it had been a bad week. We didn’t go any further.

On the whole, Kate is still doing well. Her decline is very gradual, but she is definitely declining. What I notice is that she is much more likely to turn things over to me. She is even turning over selection of restaurants to me. In the past, I have usually asked her where she would like to eat and given her several choices. She would pick one, and we would go there. Now when I do that, she says, “You pick.” It is as though she just doesn’t want to be bothered with making a decision.

She also has many computer problems and needs to ask for my help. She is especially bothered when I am with my dad. She likes me to be around. Most of all she recognizes that she is less able to do everyday things. She is to fix sweets for next Monday night’s music club, and I am concerned about her getting this done and done right. This used to be her strong suit, but now she is not used to cooking. When she tries, the process is too confusing. She gets mixed up, and things don’t turn out.

We continue to be blessed. We continue to enjoy being together. We are even talking about making a trip to New Zealand or Russia or both next year. At the same time, everything I plan for the future involves some guestimate of what her condition will be like at that time.

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Mini-Discussion

I have mentioned before that Kate and I rarely have any conversations that relate directly to her Alzheimer’s and how she is feeling. This past Wednesday, however, we had a brief discussion. Here’s how it happened. I think I have commented before that she has a harder time understanding movies than she used to. She gets confused about the plot, especially if there is anything complicated about it. On Wednesday, we went to see Anna Jesseina. It was a modern adaptation that I won’‘t even go into; however, neither of us liked it. It also had a lot of very quick “cuts” during the early part of the movie that made it hard to know who was who and what was going on. I suspected this would be hard on her, and it was. (A similar thing had gone on at Un Ballo in Maschera at The Met.)

As we drove to Hathaway’s s for dinner afterwards, we discussed the movie. When we got there, she told me that she just couldn’t get any of it. She was confused the whole time. It made it very difficult for her to remain to watch the movie. Then she said, “”You know I am getting worse.” I acknowledged that she was correct. We discussed how fortunate we are to be enjoying things while she can. She indicated she didn’t know how long that would last, but her comments made it sound like she may think it will last longer than I think. I asked her if she felt any closer to telling the children about her Alzheimer’s. She responded very quickly that she felt we were a long way from that. I, on the other hand, had been thinking that we might want to tell them either before or after our trip to Jackson Hole in June. (My reasoning is that they might notice signs that would make them wonder.) I told her I knew she didn’t like to dwell on the topic but that I wanted to be more supportive if I could. The conversation didn’t last long, but it underscored my belief that she is quite frustrated over not being able to do things or to understand movies. I think that extends to books because I hear her talk less about her books than she used to do. I think her major reason for listening to books is to help her sleep and that she is not finishing books nor remembering what she has read. She is also playing Free Cell on the computer and her iPad more. In addition, she jumps around from one task to another. I suspect that relates to frustration she has with one and tries something else.

I had a brief conversation with our pastor this week. He mentioned that a member of the staff had thought things were not quite right with Kate after our return from New York. He also felt that our children probably know or have a suspicion. This makes me think that others around the church are beginning to notice. He encouraged me to tell the children, but I think that was mostly to help me since I do not have someone to talk with now. I told him that he and our attorney were the only ones who know.

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Phases and Frustrations

I don’t think I was explicit on the change in my schedule as a result of care for Kate and care for Dad. Let me be clear now. When I learned about her diagnosis, I immediately changed my schedule as it relates to work so that I could spend more time with her. The care for Dad required more changes in my time at work. While I have never told the staff about Kate’s AD, I had let them know that she and I were going to try to spend more time together. I also told them I wanted them to assume greater responsibility for running the company. That has worked well. So well in fact that I do very little in terms of the daily affairs.

This evolution of the business as well as the growing needs of Kate and my dad have led to my coming into the office each morning, but I do only personal things. Some of that has involved plans for the 3 trips that we have coming up – -NYC in December, the Peru and the Galapagos in Feb/March, and the week in Jackson Hole in June. It also includes responsibilities with my SS class and our music club. I am occasionally asked if I am retired. I generally hesitate in answering by saying I spend less and less time at the office, but I believe I am really at the point of saying, “I am retired, but I go to the office in the morning.”

Now to the frustration part of this commentary. I find that even though Dad is in a nursing home, I feel the need to spend a good bit of time looking out for him. That involves taking something to eat each afternoon, making sure he has bananas, peanut butter, crackers, and Oreos as well as getting his clothes cleaned. In addition, there are routine visits to the cardiologist and less routine things like the dermatologist and the surgery he had last week to remove a tumor from his right forearm. He keeps me quite busy when I am with him. He always needs something.

Yesterday I took him to his cardiologist. We waited over an hour to see the doctor. I almost always take him someplace to get something to eat before taking him back. Before I could address this, he mentioned that he would like to get something to eat. I said that I had thought we might go by Wendy’s and get a baked potato. I have brought him baked potatoes on a number of occasions but not in 3-4 weeks. I like to give him a potato because he likes them and is able to eat and swallow them easily. However, he told me that he was getting tired of potatoes and wanted something else. While I went into his surgeon’s office to change an appointment from the coming Monday to this Friday, he thought more about what he wanted. When I got in the car he told me he wanted either a cheese omelet or spaghetti and meatballs. I thought for a moment and told him that we were not too far from a Waffle House and that we could get an omelet there. We went there. When the waitress came to the table, I told her he wanted a cheese omelet and asked him if he wanted anything with it like sausage or hash browns. He said that he didn’t. As soon as the waitress put the omelet at his place, he told me he wanted a waffle to go with it. I called the waitress over and let her know but told her not to put in the order until we saw how interested he was after eating his omelet. As it turned out, he didn’t want the waffle.

As we were leaving to go back to Mountain Valley, he noticed that Office Depot was directly across the street and asked me to stop in there to get him several ball point pens because the folks at Mountain Valley had done something with the ones he had had. I bought the pens and got back in the car. He then said, “I should have asked you to get some postcards as well.” At this point, I told him I would do that another time and that we needed to get back.

As we were driving he told me he thought he would need something else to eat. I told him that we would be arriving at Mountain Valley as they were serving dinner. I took him directly to the dining room, and after giving his nurse instructions from the cardiologist, I left for the day. The total time for all this was 4 hours. Had I stayed longer there would still have been things to do. For example, I noticed that he needed a shave, I hadn’t gotten his teeth brushed, etc. It never ends. Although he periodically says something about all the time I spend with him, he never really seems to be bothered by it.

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An Example of What It is Like.

Kate and I are leaving Thursday for Fort Worth for our 50th TCU class reunion. I just got an email she sent to the secretary of our music club. In it she says she is free for a meeting this Friday morning or Monday morning. I called her to remind her that we will be in Texas both those times. She had forgotten. She repeatedly forgets the moment to moment things although she remembers many things from the past. These must be troublesome things for her. In fact, although we don’t talk specifically about AD, we have so many of these experiences that she doesn’t have to say anything for me to suspect how frustrating it is for her.

The other day she had some simple problem on the computer, and she said something about “This is going to be a long road.”

I bought new phones at the house about 6 weeks ago. One has been missing for at least 2 weeks. We have remotes that go with each TV in the house. They are not interchangeable. The one in our bedroom disappeared a few weeks ago; so we borrow from another one when we need it, but it won’t do all the same things the correct one will do.