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Decisions

I’ve noted before that I often wonder when is the right time to let the children know. I am now comfortable with the decision to hold off as long as we can, but can’t help wondering if the week with the family this summer in Jackson Hole might not give the children a reason to suspect. Having talked with Kate, I know that she is far from ready to mention anything to anyone.

A related issue is when do you (Kate) stop accepting certain responsibilities. She seems eager to volunteer for certain things that are hard for her. Last summer she volunteered to be the editor of our neighborhood association newsletter and directory. She was going to get an issue out last fall with pictures from a Labor Day picnic and our flag at half-staff for 9/11. She still hasn’t gotten the newsletter out.

Late Saturday afternoon when I got home from visiting Dad, she was very glad to see me. She had been working on the neighborhood association directory and was quite frustrated. She asked if I could spend Sunday afternoon helping her out. I agreed to do so. I should say that after lunch on Saturday I had created an Excel file she could use to enter any new neighbors or to update the information we have on existing ones. This was a simple matter in that I simply did a “”save as” from the original file she was given. Then I put the information in a form that she could work with more easily than the original file. I tried to ask her what she wanted me to do now, but she didn’t want to explain. This is a very, very common pattern in our relationship. It is difficult for her to explain things. The explaining part of her brain just isn’t working properly.

On Sunday afternoon we worked together to address her problem. It turns out that she needed to organize an existing hard copy of the directory. The way the directory had been assembled the names were organized by streets but neither arranged by house number nor alphabetically by names of the owners. That makes it very hard to locate a particular person. This is a very easy task akin to organizing a deck of cards, but she simply got too confused and couldn’t do it. I simply did it for her.

This raises the question of how long Kate can continue to do something like this. It is simply too difficult. She was called for jury duty by our municipal court last week and was excused because of her age. She was disappointed. She thought it would be interesting to serve. I, however, thought it would put her in an uncomfortable position since it would require asking her to comprehend arguments, remember details, and to render judgment on a person. These are all things that would have been difficult for her.

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Sometimes it’s funny; sometimes it’s not.

The overriding response to AD is sadness, anger, depression, etc. – all things that we think of as negative. We’ve had our share of those things right from the beginning. I still remember the tears that came to my eyes when the doctor told Kate the diagnosis. Much of what I have reported involves the negative even though it is simply a report of something she has done that illustrates her condition.

On the other hand, we experience funny moments, or perhaps I should say, we don’t always react with sadness or depression. For example, yesterday Kate called me from her GYN’s office to say that she was through. We decided to meet at Bruegger’‘s for lunch. Her GYN’s office is on the same street as Bruegger’s. I had worried about Kate’s getting to her doctor’s office since she had not been in a good while. I had offered to lead the way for her. She declined and was able to get there without any problem. After we hung up, I thought I should have asked if she could get to Bruegger’s without any trouble. I didn’t; however, since we go there so regularly and it is on the same street as her doctor’s office. Nevertheless, I did worry a little and thought I might hear from her. I left home to meet her at the restaurant and noticed that she was not there when I arrived. I had a bad feeling but went in a started placing our order. While I was doing so, I got a call from her. She was frustrated. I asked where she was. She told me she was downtown near UT.  That meant that she not only did not simply drive on Taylor to the restaurant but that she had gone the opposite direction from the restaurant.

Anyway, I guided her over the phone, and she arrived at the restaurant 10 minutes later. When she arrived, she laughed about what she had done. This is not an uncommon reaction when she does something like this. I told her I was glad she could laugh about it. She then told me she had seen Ellen that morning. Ellen asked when we were going to South America. When she gave her answer (which she wouldn’t even tell me), Ellen said, “Oh, that’s right away.” Then she realized she had given the wrong answer. This is a very common occurrence. She has no idea when she has appointments, when or where we are going, etc. She and my dad both forget times and dates within moments of my telling them. They simply don’t register.

My point here is that sometimes we just laugh. I find that is good for both of us. We have enough of the more negative reactions. I am wondering what how we will react as time passes and things become more serious.

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So what’s it like after 2 years?

A week and a day ago marked two years since Kate’s diagnosis. I recall at that time how hard it was to fight back the tears when I heard the word. Since that time I have continued to wonder what things will be like in the next year. Or the year following. Or the year after that. Although I have continued to report the deterioration in her condition, she continues to get along well in many ways. I still believe that virtually no one suspects her AD. It is possible that Ellen may suspect, but Kate has never mentioned that possibility. The only person she has thought might suspect is her hairdresser and that because she has missed so many appointments. Now she gives me all her appointments (if she and I remember to do so). We both put them down on our calendars (our phone calendars).

The biggest toll is the one on Kate. She is regularly frustrated because of her inability to do even simple things. Last night she was frustrated over her Facebook page(s). Inadvertently, she created a new FB account. We hadn’t figured out how to delete the account, and I hadn’t taken the time to do so. I simply set it up so that the correct account was the default. For some unknown reason she has been able to get into the old account. I redid things that week, but she got back into the old account yesterday and requested a bunch of new friends who accepted. I suspect these were already friends on her “real” FB page. At any rate, she was frustrated and discouraged last night and said, “”I just can’t do anything anymore.” This is not far from the truth. My biggest concern in this respect is that she continues to get herself in situations that she may have difficulty getting out of. The neighborhood directory is a case in point. She is now working on being a volunteer tutor for a local high school. It is terrific that she wants to do these things, but she won’t be able to do them long or at all. Then she will feel frustrated.

I don’t say much about this, but I am watching her and my Dad go through the same journey. They both are quite similar in wanting me to go slowly with them. Neither one can process information quickly. Dad can’t follow long emails or videos. Kate is having a hard time following movies. It is common for her to leave a movie saying that she got so confused and that I will have to explain it to her. Sometimes the movie really is difficult to follow, but mostly it is her difficulty in following and understanding.

I want to repeat something that I have said a number of times before. Our relationship has been stronger than ever. My own attitude toward her is, I believe, the key difference. I have made a commitment to spend more time with her and to be patient with her. With respect to patience, I do not always meet my own expectations. I believe that is because she is so normal in most ways that I respond to her as though she is normal. When I stop to consider that all of the things that cause me to be impatient are not her fault at all but a function of her AD, I am able to understand. Ironically, then, I believe I will be more patient as she continues her decline. I feel the same way about Dad. I should add that Dad is further along on his journey, but there are many similarities between the two of them.

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Short-term memory

I continue to be struck by, and mostly thankful for, the effect of Kate’s AD on short-term memory. While it is a problem for those who are close to her (I believe I am the only one affected right now), I clearly believe this is better in terms of social adjustment than losing longer-term memory because so much of our daily conversation relies on things in the past.

This morning I had an experience that has become rather normal for us. I was in the bedroom getting ready to leave for the office when she came in to give me some paper to take to the office for recycling. She then walked into the kitchen. While there my brother, Larry, who has been with us since Tuesday night, asked her if I had left yet. She told him I was on my morning walk. I walked in a few minutes later and saw Larry’s car backing out of the driveway. I caught him and asked if he were leaving. He said she told him I was walking. She had obviously forgotten I was in the back.

The only consequence of this kind of memory problem is my never being sure she will remember to do something or to meet me. This leads to my reminding her of many things, and that becomes annoying to her sometimes though not always. She often appreciates the reminders.

At noon today she has a dermatologist’s appointment. It has been quite a while since she has been to the dermatologist; so I have been concerned that she won’t remember how to get there. I have arranged for her to meet me at my office at 11:30, and I will lead her over there in my car. Then I will head to a noon meeting at United Way. I feel pretty good about her getting home, but that is no sure thing either.

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Occasional Setbacks and “How am I?”

Thursday afternoon Kate took a call from the body shop that is repairing her car. They said her car was ready to be picked up and that the cost was just under $3,000. This is pretty close to their original estimate, but I had not told Kate how much it was going to be. She called me right away to let me know, and I could tell she was depressed. She had no idea what it was going to run. That has continued through today and has been reflected in a little irritability. I believe she is coming out of it though. When I returned from the grocery store about 15 minutes ago, she said she wanted to tell me she loved me. I considered that an apology for her mood the past couple of days.

In my previous post I was intending to say how each of us is getting along as we approach the second anniversary of our receiving the official news that she has AD. I believe I conveyed how she is getting along but ran out of time before commenting on my adjustment. Here it is.

On the whole I am doing well. I have made many adjustments. Among those has been accepting things that she does that are not the way I would do them (the way she loads the dishwasher, or leaves dirty dishes on the counter without rinsing). It also includes responding to her wishes more quickly. Things that I would have tried to explain, I don’t. That is because she stops me. It is amazing how many times she stops me during a given day. She simply says, “Let’s not discuss it.” I immediately drop the subject.

Thinking of my actions, I believe I am doing very well. On the other hand, I do feel the stress involved in taking care of Dad and Kate. It is remarkable how similar some of their symptoms are. One example is their desire not to discuss anything that I want to discuss or hear more about or to have them explain. I interpret this as occurring because the condition of their brains does not enable them to do it. The simplest things can cause problems; so explaining why she wants something or did something is just too difficult, really impossible.

The other things that cause more stress than I am accustomed to involve the sheer amount of time required to take care of them. For that reason I get behind on other things like returning phone calls, paying bills, or completing other tasks.

I am taking more time away from the office and will probably stop going in every morning in the next few months. That will give me even less time to do the various things I need to do for myself or to run the household, but I will be able to spend more time directly helping Kate. Her condition has given me much appreciation for the need for two people to run a household. Since I am doing it all, I am always hopping.

The last thing I would say is that my mood goes up and down. Sometimes I feel very good. At other times I am low. That is directly related to my experiences with Kate as well as Dad. I come home visiting Dad worn out from trying so hard to please him and discovering that it doesn’t appear to make any difference.

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New Year: So where are we? How is she? How am I?

I started to entitle this entry “Emotions change quickly” but thought that since it is the beginning of a new year some reflection is appropriate. Both things are intertwined.

Just yesterday I sent the following email to Tom and Carl, two email buddies whom I have kept up with since college days at TCU. Neither of them knows about Kate’s AD.

As I suggested in my previous post, each of us is approaching the stage of life with a different set of experiences and situations. I have never been a workaholic, but my job has necessarily required time apart from Kate. I used to travel a lot. I was reminded of this the other day when I noted that I have travelled only 23,000 miles this year. At one time I was travelling over 100,000 miles a year. That’s how I got to 3,000,000 with Delta. I must have flown 500,000 with US Air. Kate never complained. She actually likes alone time, and I think we were together just about as much as she wanted. Now that we have reached this stage, I just feel the need to make the most of whatever time we have left. That is why I have put as much emphasis on our 50th anniversary as I have done. I have also tried to attend as many social and cultural events as possible. We do about as much as we are comfortable doing. Sometimes it is just nice to be at home.

For me this is as much about attitude change as it is about just being together. I mean there is a difference when we are together. For example, as I finished the paragraph above, she came in to ask if I could build a fire. In the past I would have done it, but I might have thought, “Gee, we just had a fire each of the last 2 days. Do we really need another one today?” Instead I immediately started working on a fire that she will enjoy the rest of the afternoon until we go to dinner. Another way of expressing it is that I make more of an effort to make her happy than I did for a good bit of our married life. The great news is that I find that we are enjoying each other more than we did in the past. That’s saying something because we have always had a good marriage. Now it is almost like we are on a honeymoon. We don’t take each other for granted. Enough said.

Of course, this leaves a lot unsaid because I don’t want them to know just yet about Kate’s diagnosis. It also emphasizes how quickly my feelings can change. Yesterday I sensed that Kate was somewhat depressed. When I got home from visiting Dad, she was almost asleep on the sofa in the family room. We talked a little before dinner, ate at home, and went to bed. During the night she had some problems with diarrhea. This has been a chronic issue for her for some time; however it has gotten worse in the past 6-12 months. This made me think about her continuing inability to function effectively when doing a lot of tasks and what things will be like as she gets worse. It also made me think about our upcoming trip to Peru and Ecuador. I understand that almost everyone gets diarrhea on this trip. Will this be especially difficult for her? I don’t know. I hope that we will be able to take medicine that will help us. She has two doctors’ appointments coming up soon. One is with Dr. Reasoner, the other with Dr. Edwards. She also had a bad bout with acid reflux night two nights ago. I ended up calling the doctor on call at Dr. Reasoner’s office. He recommended she take Gravascon or Mylanta which we have bought subsequent to my call. My point in going through this is to say we can be up at one moment and down at another. My mood depends heavily on how I believe she is feeling.

So how is she doing? On the whole, I would say she is doing well. I think she would say the same. On the other hand, we both see signs of greater difficulty doing lots of things. I get the impression that she is sometimes just in a daze. On simple tasks like entering a new name in her contact list or an item on her calendar, she asks me to give her just one thing at a time. I can’t say, “”We are going to the Bijou on Thursday at 8:00.” That is too much information at one time. Another indication of how difficult it can be for her to do things involves her hair appointment. She missed one while we were in Tom for Christmas, and her hair dresser asked her to schedule a new appointment when we returned. I have been asking all week if she had done it, and she hadn’t. Last night I asked her if she would like me to call and make the appointment. She quickly said yes as though a load was lifted from her.

At dinner on New Year’s eve, she made a gentle reference to her AD, but we did not discuss it. It is clear, however, that she sees herself having more trouble. She does not believe her time is as short as I believe it is. She continues to talk about taking each of the grandchildren to NYC when they are 13. That would be the summer of 2014 for Heather and 2016 for the twins, and 2017 for Taylor. I am not even sure 2014 will work out. Kate certainly would be able to travel, but based on our recent trip to NYC, she requires a lot of help. (I have even thought we might consider taking Heather to NY this summer instead.) That said, I believe it is good that Kate does not believe the trips won’t work out. This would depress her.

Going to have to close now. I will deal with how I am doing in the next post.

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Special Moments Followed by Melancholy

A week ago this past Friday we went to a 5:30 movie (Anna Jesseina) and then to Casa Bella dinner. Everything was perfect. We got our usual dinner, splitting a Veal Piccata, a bottle of wine and white chocolate cheese cake for dessert. Every part of the meal was great as well as our conversation. All of this is to say that we continue to have many special moments – I suspect more than most couples.

For some reason the next day I was feeling kind of melancholy. In the car I listened to music that has been special to us. That would include a song from the movie, Same Time Next Year and another from the television series, ”Family Ties.” It was hard to keep my mind off of the fact that the special times we have together are limited and grow fewer each day. Mind you, it wasn’t that Kate did something to remind me of this; it was simply the joy of good times together that made me think of the limited time we have.

This past week we went to Lubbock to be with Kevin’s family for Christmas. This was a special time. During the trip there were reminders of Kate’s decline in memory. For example, she indicated she wanted to go to the Astrodome. I decided that the easiest way to work that into our schedule would be for us to do it on Friday morning, the day we were leaving. Each day, however, she would ask about going to the Astrodome, and I would tell her we would do it on Friday. On Thursday night, we said our good-byes to Kevin and his family after dinner at the Macaroni Grill. It was clear that the reason for doing so was that we would not see them the next morning. When she got up Friday morning, she worked on the computer for a while, and I mentioned that we would want to leave on the early side to get to the Astrodome. She took her shower, dressed, and got ready to leave; however, she hadn’t packed her things. When I mentioned this, she asked if we were leaving today. I told her yes; so despite numerous mentions of when we were returning and her writing it on her calendar, she still did not remember that this is the day we were to return.

Looking on the bright side once again, it is good that it is the short-term memories that are the biggest problem because most of our functioning depends on longer-term memory. This would not be true if she were in a position of responsibility either as a volunteer at the library or if she were still working in the school system. I am even beginning to be concerned about some of her volunteer work with PEO and our neighborhood association.

Another interesting side-effect of her Alzheimer’s is that she looks more kindly on most people. She is more complimentary of me than at any point in our marriage. She often talks about how bright I am. She says similar things about other people. I think this is because so many things are difficult for her that she is impressed when she sees others doing what she cannot do.

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Some Things Are Funny

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.

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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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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.