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Always Trying

Earlier this morning I walked into our bedroom where Kate was entering something in her iPhone. She asked me what channel CNN was on. I told her I didn’t know but that I would get it for her. She said the “Favorites” feature wasn’t working. I got the channel, and she asked me what number it was. I told her “1202.” She then entered it into her phone. This is a good example of the many things she does to help herself function better. I admire her for trying. At the same time, I feel sad as she works so hard trying to organize herself to prevent losing things or to help herself remember how to do things.

I continue to repeat the same old story. I don’t know that anyone else but her hairdresser suspects she has AD, but she has a serious problem functioning with daily tasks. This past week she missed another hair appointment which she rescheduled for two days later. She didn’t have it written down, and she hadn’t given it to me to write on my calendar. We had developed the practice of her telling me when her next appointment is right after she leaves her present appointment. We goofed. She doesn’t remember scheduling the next one; so she is going to have to call and either make one or jot down the one she made.

I haven’t said anything about Dad in a while. I suppose that is a good sign. That means he hasn’t had a lot of problems. This past week I have, however, noticed a change. Three or four days he has been very hard to wake up. One day this week he was so hard to arouse that we sat in the dining room for an hour without his becoming talkative – just saying he wanted to go back to bed. He didn’t eat the cottage cheese I had brought him, and we went back to his room before his dinner arrived. He just wanted to sleep. The next day he was fine.

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Making Plans

The number of things that are an issue now make me uneasy about travel plans. We have wanted to go to New Zealand and to the Baltic States and Russia. I have been looking at Overseas Adventure Travel (OAT) for these trips ,  New Zealand in January or February 2014 and the another in the Fall 2014. I am beginning to think that another OAT trip may be too busy and require too much for me in terms of being ready to go for breakfast, for the bus, etc.

Kate’s functioning continues to deteriorate although I still think most people would never notice. Twice since coming back from our trip she has gotten lost. The first was on the way to church, a place to which she has driven since 1983. This past Friday she was later arriving home than I thought she should be. She had gone to Ellen’s to deliver some food for them. I decided she and Ellen were having a nice visit. When she came back, I asked about her being so late. She said she had gotten lost. She didn’t want to talk about it. This is a common pattern after she has done something frustrating. A little while after something has happened, I occasionally will ask, and she will tell me what happened though I don’t belabor things.

Short-term memory is increasingly a problem. For example, last night at the symphony concert I told her we would be going to a fund-raiser for the orchestra. At the end of the concert she spoke with someone who asked if we were coming, and she told them we were not. When I told her we were going, she didn’t remember my telling her the first time. This kind of thing happens all day long.

The “Fall” newsletter for the neighborhood association still isn’t out. On Friday she asked me to get her to finish it yesterday. I tried to get this done, but failed although she did work on it a little.

Similarly, she hasn’t finished her collage of pictures from our trip to South America although she was virtually finished weeks ago.

She continues to depend on me and actually hands off things to me. For example, the past two days she has handed me her can of V8 to open for her. Little things like this can be frustrating to her. She said that she didn’t want to break her nails.

All these things have made me more certain that our trip to New Zealand will be on our own.

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How am I feeling?

In my comments in the previous post, I neglected to indicate how I am feeling about things right now. Let me try to quickly summarize this. On the whole, I am feeling all right as is Kate. We don’t dwell on her AD. We are enjoying being together. We are staying active – going to movies, theater, etc. We have learned to live somewhat comfortably with the reality that we are facing.

At the same time, I have to acknowledge that Kate in particular suffers frustration and some depression. It is not surprising that this is rougher on her than on me. She knows she is less and less able to do things that were easy for her in the past. I am having 2 reactions. One is sadness for her. I hate to see her suffer. I work hard to provide experiences that take her mind off of her lessening abilities. The second, however, is frustration with her and with myself. I have to admit that I am not always as patient I want to be. When I face a specific instance in which I fail to respond properly (with great understanding), I am frustrated with myself. I have often expressed this to her. Because she is for the most part normal, and because we have a long history together, I tend to treat her in the same way that I did years ago. Then I recognize that she is different now. She cannot help doing (or not doing) certain things. A typical situation would be that I have told her something that she has forgotten. I may say, “But I told you.” Then I recognize that telling her does not mean she will remember. Then I feel guilty. This actually puts an unusual burden on her because it adds one more instance in which she has done “something wrong.” This kind of thing happens a lot.

She doesn’t like me to give explanations nor does she like to give them herself. The other day she sent me an email asking if Taylor would be 10 on his birthday (today). I sent a reply saying yes. Then I started to give her what I thought would be an easy way for her to remember his age. After starting a sentence, I realized that she wouldn’t be able to understand what I was telling her.

One other issue I continue to have is planning for things that are months or even a year away. The biggest issues involve travel. We are looking at the possibility of a trip to New Zealand next year, perhaps January or February. If I felt there were challenging moments on the most recent trip to South America, what will things be like next year. Should I make plans? I face a conflict between arranging for her to make a trip that she has talked about for a long time versus the difficulty of our being able to handle it when the time comes.

Still the bottom line is that we are adapting well. I think the most depressing times for me lie ahead. How far ahead I don’t know.

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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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Patience in Short Supply

We were at Denny’s today. It was cold inside. Kate couldn’t wait to order. She wanted her coat right then. I went out to the car and got it. The irony is that I wait and wait for her because she moves so slowly, but when she wants something, she wants it “now.”

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Traveling in Peru and Ecuador

Kate and I have typically traveled on our own. The major exception was our trip to Tanzania. We are now at the end of a trip to South America (Peru, Manchu Pichu, the Amazon, Ecuador and the Galápagos Islands). Here are a couple of observations.

Traveling with a group requires a schedule. Overseas Adventure Travel (OAT) clearly understands this. This meant each of our days has been planned, and we are all expected to comply. That has been a challenge for Kate. She can’t remember the schedule at all and depends solely on me to get her places on time.  Since she is not naturally punctual, this has been something of a problem.

The biggest problem for me is getting ready for everything. She never wants to get packed before going to bed. That means getting up earlier than I want and being rushed to be on time for our departure. We have had numerous early departures. Tomorrow we leave hotel at 5:30. When I suggested getting back to the hotel to prepare packing for tomorrow, she didn’t want to do it. This has been a pattern throughout the trip.

The trip, by the way, has been fantastic, but I don’t plan to make any more group trips, possibly fewer international trips if at all.

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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.