This morning after returning from my walk I saw that Kate was dressed and dressed more nicely than she would be on a Saturday morning. Typically she wouldn’t get dressed until 10:00 or 11:00, and then she would be more casual. When I said something, she dismissed my remarks and indicated that she wasn’t dressed up any more than usual. I just let it go. A little while later she asked me if I could help her with her medicine. (I changed the container for her medicine last Sunday, and it has confused her greatly. I was surprised by this because it is laid out the same way as the previous one that she has bought for herself and used for at least 2 years. It is designed so that you can put pills in it for 4 different times of the day for a 7-day period. The only difference in the new one is the color and the way you open the sections that actual contain the pills. Nonetheless she can’t get it. I had told her I would get another one, but she was trying to relabel the places that say “noon” and “evening” with tags that say “morn” and “bed.”) She had taken out the medicine from several sections and didn’t know what to do with them. I fixed that. Then she said something about Sunday, and I realized that she thought today was Sunday not Saturday. We both laughed, and I told her at least the bright side was that now she has an extra day before Sunday.
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.
Sweet memories but constant reminders
Wednesday night we got back from NYC. It was everything I had hoped it would be. We saw more shows than ever (5), 1 opera, a performance of Handel’s Messiah, and the new movie, Lincoln. We are treasuring the memories of such a special trip.
Back home, I see Kate dealing with the frustration of accomplishing things – mostly on the computer. Yesterday I could sense she was depressed which I took to be related to this frustration. When I got home from visiting Dad, I asked her what she would like to do for dinner. When I suggested one possibility would be to bring something in, she didn’t look excited. Then I said, “”How about going to Casa Bella?” This is one of our favorite restaurants in Knoxville? We almost always get the same thing, and it has come to be a comforting place when we are low as well as times when we are celebrating. She responded quickly saying, “”Could we?”
I told her I would like to go ahead and get my shower. She said she was ready but would continue working on the computer while I got ready. Her power cord is damaged again; so she was using mine. She has repeatedly has power cord problems because she uses the computer with the power cord plugged while lying in bed or sitting in a location where the cord is pulled. Within two months of getting the latest computer, we had to replace the piece in the computer into which you insert the plug as well as the power cord itself. We had done this on her previous computer as well. We have discussed why this is happening, and I have encouraged her not to use it that way. In addition, I bought her an iPad because I thought she could use in it instead of the computer, but she has not gravitated to the iPad. I think that is mostly because the bulk of what she does is making photo collages using Microsoft Publisher and Creative Memories, neither of which she has on the iPad.
This is all a preface to one of my failures in handling a situation last night. Just before we left and while she was working on the computer, I told her again that it was better not to use the power cord while seated on the sofa. (That is because it requires the cord’s being pulled to the side which can cause the same damage to my cord as to hers.) She said, “”I am trying to be super careful.” I answered softly but inappropriately, “If you were trying to be super careful, you wouldn’t be using the computer this way.” She then broke into tears and went to get her coat.” When she came back with her coat, we embraced and I told her I loved her. She said, “I just hate this; I can’t do anything right.”
We had a perfect evening at Casa Bella. We caught them on a very busy night, but we had good service, the veal piccata was better than usual, and we topped it off with white chocolate cheese cake. When we got home, she was tired and got into bed before I did. While I was brushing my teeth, I heard her, and asked if she were laughing or crying. She said, “”Crying.” I asked, “”Why?” She said, “”I don’t know.”
These are continuing signs that she is getting progressively worse, and she realizes what’s happening. One of the things that hurts me is that she keeps most of this to herself. I wish she were able to talk about it more, but I think it is not just to spare me but to protect herself. I suspect that she feels the more she dwells on her condition, the worse things are. She is really frightened.
Once again, events of yesterday reinforce the superficiality of social relationships. At noon yesterday, we had our Sunday school class Christmas lunch. She sat at the same table as our pastor. He has told me before that except for knowing from me that she has AD, he is unable to tell when he speaks with her. I suspect that even though they sat at the same table for more than an hour, he wouldn’t have been able to tell. On the other hand, I can see so many things that make it difficult for her to function effectively.
This makes me wonder how long we can keep this from our children. I really want them to know so that they can make the best of their relationship with her the way I have been able to do. At the same time, Kate does not want people to look at her as a patient. I will honor this desire until or unless the children begin to suspect. That could happen this summer when we spend a week together in Jackson Hole. If it doesn’t, this will be further evidence of how long someone with AD can keep it hidden from others.
Several good days
I often post things that are not working or the negative changes in Kate’s condition. That doesn’t reflect the many good times and experiences that we are sharing. The past few days have been especially good ones. It began on Saturday when we drove to Nashville for a visit with long-time friends, Scott and Jan Greeley. Kate’s mother was pregnant with Kate at same time that Scott’s mother was pregnant with him. He and his wife are very special friends. We were there for lunch, an afternoon of conversation, and dinner before heading back home.
On Friday, I received a text from a church acquaintance, Cindi, who asked if Kate might like to join her on Sunday afternoon for a performance of the Living Christmas Tree at a local church. Knowing that Kate would not remember Cindi, I asked that she come by on Friday to re-connect and invite Kate. She did so. She is a delightful person, and Kate readily accepted her invitation. Cindi picked her up and took her. Kate was very enthusiastic when she came home. She loved the show and loved being with Cindi.
Just before Kate left with Cindi, I got a phone call from Laura Williams, an old high school friend of Kate’s. I told her that Kate was just getting ready to leave and asked her to call back when she returned which she did. They had a nice 30-minute conversation.
That evening when we went to dinner and returned home, Kate was the most upbeat that I have observed in some time. It was good to see. Something seemed to carry over through yesterday. I observed virtually no sign of irritation with me over my efforts to control her. On the contrary, she seemed especially conscious of ways in which I help her. Last night before she got into bed, she told me how much she needs me. When I thanked her, she said, “No, I mean it. Do you really know how much I need you?” I got up from my chair and walked over to her and put my arms around her. I told her how much I loved her and said, “I want to help you. I want you to be able to count on me.” We embraced for a moment without saying a word. Sometimes words aren’t necessary.
Sweet and Bitter in NYC
This is Sunday morning, and we have been in New York City since 9:15 Wednesday morning. I just got back from a nice walk around the neighborhood on the upper Eastside near Bloomingdale’s. Kate is still sleeping soundly. I am going to take a few minutes to collect my thoughts on the past few days.
The first thing to say (and the reason I put “sweet” before “bitter” in the heading for today’s post) is that we have had a marvelous time. It is everything I had hoped. This is the first of a series of things we will do to celebrate our upcoming 50th anniversary (May 31, 2013). I chose New York City because it is the place we have visited far more often than any other place, we love it, and Christmas in NYC is very special. Besides that we had our first date on December 19, 1961, got engaged on December 19, 1962 (50 years ago this month). Our first date was a performance of Handel’s Messiah. Tuesday night we will attend a performance of Messiah at St. Thomas Episcopal Church on Fifth Avenue. We both love the theater; so we have also attended My Name is Asher Lev, Newsies, The Book of Mormon, Un Ballo in Maschera at The Metropolitan Opera, and Once. We may attempt another show this afternoon; however, I am tempted to pass some time in our neighborhood. It is a wonderful area, and we have not spent sufficient time here. Of course, we don’‘t leave until late afternoon on Wednesday; so we might do that another time.
Now for the bitter. Although we have had a great time, we are both noticing Kate’s deterioration. At lunch a couple of days ago, she said, “”I would love to come back to New York with Jesse, but I don’t think I could do it again. She would have to take charge.” I said something about the wonderful memories of previous trips. It was a sad moment for both of us. In addition, at each show she asks me to explain things. It is very hard for her to follow the complexities of the stories. Yesterday at the opera, she asked me to explain what had happened after each act. She said she simply couldn’t follow things. I said it must be like there are so many stimuli coming in that she doesn’t know what to focus on. She said that was “exactly it.”
Because of her condition, for the first time I haven’t considered leaving her anyplace to browse and then meet her later. This is something we have frequently done in the past. We have both stuck close together at all times. There have been at least 2 occasions when we have gotten separated momentarily. One of those was going into Macy’s.
In addition, she gets confused on instructions. For example, last night while waiting in line to enter the theater, a theater employee asked us to move down to another line. For some reason Kate thought we were supposed to enter at a different place; so she simply went ahead of people who had been waiting in line. She also has trouble going through the turnstiles at the subway.
All these little things notwithstanding, we are having a wonderful time. It makes me glad that I decided to go all out for our 50th anniversary because things will deteriorate from here. Next year she will be less able to enjoy these things.
Good Weekend
We had an active weekend. Friday night we went our for a nice dinner at the Parkside Grill. Saturday night I picked up something from Asia Kitchen, and enjoyed it with a glass of wine. Sunday night after coming home from Dad’s, Kate had the house decorated for Christmas with many candles lit in the family room. We had a glass of wine, and conversation with a fire in the fireplace. I had brought home sea bass from Whole Foods along with an heirloom tomato. It was a special evening even though I have a bad cold.
I make a point of these little things because we are finding that those moments are more special than we would have thought in years past. We really are making the most of the time we have left.
On the downside, this morning Kate asked me how to turn on the TV, something she has been doing without a problem up until now. I don’t mean that she hasn’t had problems with the remote. That has always been confusing. I showed her how and turned it on for her. A few minutes later, she came to ask how to change channels. She couldn’t remember. I showed her, and she remembered right away.
Two other things caught my attention over the weekend. On Saturday when I got home from Dad’s she indicated she was not in a good mood because I was coming home a little later than usual. As we discussed this over a glass of wine before dinner, she told me she likes for me to be at home. She said she has so many questions to ask me, and it frustrates her when I am not here, especially as it is growing dark outside.
The other thing involves the birthday cards that Dad received. She brought them to me yesterday afternoon and asked if I might like to take them to Dad. I said I would but thought she was going to put them in a scrapbook. She had completely forgotten that she had decided to do the scrapbook. It is getting so that she forgets many if not most things that she says she will or wants to do at a given time unless I take the responsibility of reminding her.
She spends a good bit of her time on the computer working on photo albums that she may never complete and playing Free Cell. I think she gravitates to these things because they are things she can do. She doesn’t say much, but I know she is sensing her decline and it bothers her.
I felt guilty over the weekend because she wanted to host a lunch for my staff, and I her I hated for her to have to do that. I explained that I will be stressed over it. She is planning to have a lunch for two of her close friends after we return from New York on Dec. 12.
This morning I took her car to the body shop for an estimate of the damage that occurred when she struck a support in the Belk parking lot. We should get it back soon. Kate will be happy about that.
What To Do About Driving
When I got home from Dad’s last evening, I discovered that Kate had run into something in her car. Her right front headlight was shattered, the bumper was loose, and the hood of the car crimpled a little. She told me that she bumped into something in the Belk parking lot. She simply hadn’t seen it because it was dark.
By itself, this is nothing to worry about; however, this has happened multiple times. It makes me wonder now if it was AD that played a role in other incidents that occurred before her diagnosis. I am able to recall that she had a panic attack when she got lost trying to find my brother’s house in 2006 when she went to Birmingham for our niece’sshower. I seem to recall that Kate was concerned about having AD at that time. We played as if it were a simple case of being geographically challenged as we continue to do. It is very clear now that it is more than that, but it makes it easier to say something about being geographically challenged. The big question for me is when does she stop driving. I know that will be a low blow. It also means that I need to be around her even more than I am now. That would mean going into the office less which I could do although it provides a nice escape for me.
Shortly after returning from dinner, I gave her a hug and told her I loved her. She said, “I like having you home with me.” She has mentioned this on numerous occasions, and I take it as a feeling of security she has when I am around. She encounters so many situations in which she feels the need to ask me how to solve some problem. When I am not there she simply has to endure her frustration. To some extent she wants to do this. Neither of us wants me to do everything for her. In fact, last night she asked what she could do to help with dinner. I started to say, “nothing” but I told her she could get the plates ready. Her facial expression told me she was pleased that she could play a role in dinner. I generally shy away from asking her to help with dinner because I feel she will do things differently than I want them done, but I may need to change this approach.
Yesterday afternoon I spoke on the phone with our pastor. I had called to invite him to our Sunday school class Christmas party. He is the only one that knows about Kate except for our attorney and the State Farm attorney who is representing us in the accident case in Alabama. He asked about Kate and to his credit asked if I were home with her. I told him I was and that she was on the phone in the next room. For that reason we did not say much. He did comment that in the times he has been with her he could not tell that she has AD. I told him one had to be around her as I am to recognize it but that it is easy to see from my vantage point. He then said that his only clue might be that she seems to look to me when we are together as though she is looking to me for security. I told him that is the case – that she depends on me for that security.
Mini-meltdown; others to come?
In my previous post, I gave an example of how well Kate is adapting to situations in which she finds her AD keeps her from doing things as easily as she could previously. Last night we had an example of just the opposite reaction. After I got home from Dad’s last evening, I poured Kate a glass of wine while I warmed up some quiche and cooked an onion for our dinner. She was working on her computer and didn’t get around to drinking any of the wine. (This, by the way, is another characteristic I am noticing. She starts on something and completely forgets about doing something else.) About the time I was going to bring the dinner into the family room, she closed her computer and was putting it away when she knocked over her wine on the table beside the new love seat we got in late August. She went ballistic. I rushed in with a towel and soaked up the red wine all over the table. It turns out that her concern was not the table but the love seat. Wine had dribbled down on the arm and then on the seat. We worked to soak it up and got most of it. We will have a permanent stain to remind us of this event. During the cleanup she was quite disturbed. Finally she said, “”I am such a disaster.” I told her that she was not. She said, “No, I am a disaster. I am going to make your life miserable taking care of me.”
As her condition continues to deteriorate, I can’t help wondering if this is something I am going to see more of. For her sake, I hope not. Once again, this is a good example of the frustrations that an AD patient experiences even as others fail to see that she has AD.
Happy Moments in the Midst of Sadness
We returned Friday night (this is Monday) from a visit with Jesse’s family for Thanksgiving. Everything went well. Kate got along well. I don’t think a thing happened that would give either Jesse or Greg a clue that she has AD. One thing I will note is that Kate seems to have developed a more positive view of other people than she had before. I have noticed this for a good while – perhaps a year. That starts with me. She tells me much more often than she used to that she is glad she married me, that I am good to her, etc. I see the same thing in her judgment of other people. In particular she comments about how smart people are. I think this is a reflection of her inability to do so many things and her seeing others do these normal things without any effort.
Now on to the reason I chose the headline above. This past Saturday we went to Gregory’s for lunch. Near the end of our meal, Kate wanted to take a moment to update her calendar. She is working harder to jot down things she needs to remember in her calendar. She asked me when we were leaving for New York. I told her Wed., Dec. 5. I also told her that I thought she had already entered the information. She checked and said that she had. She asked me what time we were leaving. I gave her the departure and arrival times. First, she is getting good at trying not to digest too much information; so she held her hand up to stop me when I went beyond the departure time. Before moving on to the date and times for our trip back to Knoxville the following week, she struggled to get the correct information into her calendar. It took several minutes before she was ready to move on. I then gave her the arrival time in NY. That took her a little bit of time. Then we went to the return trip. This became a struggle, and she finally asked me to do it for her. When I checked the departure date and time, I found that she had entered it incorrectly. My point is that this can be looked upon as a sad situation and a frustrating one; however, we both laughed through it from beginning to end. This is not necessarily typical of these situations, but it is common. It reminds me of the way Dad reacts in many situations. He will just smile and say, “”My brain just won’t let me do it.” It is really something going through these things with both of them, but it is good news that we are sometimes able to make light of the situation.
An hour after writing the above I received a call from Kate asking me for the phone number for the president of our neighborhood association. The interesting thing is that I had just given her his cell phone number 20-30 minutes earlier. She also has both his and his wife’s cell phone numbers and home phone in the directory that she was using yesterday to make calls. She specifically indicated she had their numbers. I am sure, however, that she is simply unable to remember where she put the number I had just given her or that she has their number in the directory.
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.
