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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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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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Imagining the Future

While I believe I am living in the present much more than I ever did, that doesn’t mean that I don’t think about the future. Yesterday as I walked down the hall to see Dad, I passed by several of the residents that I see every day and thought “that is what Kate will be like some day.” Rarely do I actually get an image or even think of her in that condition. What is normal is for me to simply try to do things now since we may not be able to enjoy things in the same way some time in the future. The best example of that is my plans for travel in the next 8-9 months. We will be in Fort Worth November 1-5 where we will celebrate our 50th TCU class reunion. Dec. 5-12 we will be in New York. Feb. 24-March 16 we travel to Peru and then the Galapagos Islands. June 13-22 we will be in Jackson Hole with our children and their families. Finally we will make our annual trip to Chautauqua July 18-27 with a 2-night stay in Niagara-on-the-Lake. I am looking at these trips as a celebration of our 50th wedding anniversary that occurs May 31.

All of this takes money, more money than we receive in income; so what that means is dipping into our reserves. Over our entire married life, we have rarely done this. My justification for doing it now involves my concern that after next year, I am not sure how much special travel will be in the cards for us. I hope that Kate will continue to appear normal to others a year from now, but I am suspecting that the children might notice something different about her when we spend a week together next summer. I also am wondering how many more times we will take care of the grandchildren. If I have to take care of them and her, that may be a problem.

Kate’s short term memory continues to worsen. She tries to write down all of her obligations and to share them with me so that I can remind her. We are doing a good job with respect to her hair appointments. She is now making her next appointment at the time she goes for an appointment. Then she gives it to me, and I put it on my calendar. I don’t put down everything and don’t always remember to remind her. Last Friday, for example, she was to meet a PEO sister to interview a candidate for a scholarship or grant. We had talked about it on a couple of occasions. It turns out that I got in a rush and didn’t remind her of the appointment although she had remembered it that morning. That evening when I asked her how it had gone, she was shocked as she realized she had forgotten to go. This kind of thing on a less important scale happens daily.

I am gradually taking over more and more responsibilities in connection with here tasks. She still works on the computer, iPhone, and iPad, but she needs help with many things she does on these pieces of equipment. If she accepts some responsibility like arranging refreshments for our music club, I feel I need to make sure that it gets done. Early last week she finished and sent Brian a pictorial account of our trip to NYC in July. It is something she should have finished rather quickly, but it takes her a long time. She revises and revises and then she forgets about it for a while. The same is true with other photo albums she is working on for us. The good news is that it does give her something useful to do, and there really is no deadline.

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Everyday Problems Associated with Alzheimer’s

The past week has been a full one. We celebrated Valentine’s Day by attending a concert by the Knoxville Symphony on Saturday night, the Symphony League’s Valentine’s Ball on Sunday night, lunch at Casa Bella on Valentine’s Day, and the UT Symphony that night. These were good times for both of us and serve to remind us how much we can continue to enjoy despite Kate’s Alzheimer’s looming over us. We continue to put a special emphasis on our relationship which seems more precious to us with every passing day.

On the downside, on Tuesday morning Kate took a walk around the neighborhood with one of our neighbors, Lucy Grayson. During that walk Lucy commented on another neighbor and her husband, Barry and Mary Jane Winters. Mary Jane also has Alzheimer’s which we have been aware for 2-3 years. Lucy indicated that she felt sorry for Mary Jane and then said, “I feel especially sorry for Barry.”

These are the kind of things that occur routinely, but they have a special meaning when you also are plagued with the disease. It makes me think once again that people need to be more careful about what they say.

Kate and I had lunch together and then she left in her car to run a couple of errands before returning home. I received a phone call from her a little later. She left a voice mail as I was in a meeting or phone call at the time. The message was a bit garbled but I could tell she had had an accident of some type. I sent her a text and asked if she were all right. She answered quickly that she was; so I called to find out what had happened. She told me she was pulling into a parking space and misjudged the distance to the car on her right and had knocked out her front headlight. When I got home that night I discovered that it had not only broken the right signal light but had also damaged the front fender, the right front passenger door, the right back door which will not open, and the right rear fender.

We sat down and had a glass of wine and discussed the events of the day. That is when she told me about Lucy’s comments that morning as well as how she was feeling about the accident. We didn’t say much. It was obvious to me that she was shaken by the experience. It is just one further sign of her inability to do anything right. I try to reassure her when these things happen, but we both know her situation is getting worse and affecting lots of things besides memory.

Last night at Kate’s suggestion we built a fire, had a glass of wine, and brought in Chinese for dinner. It was a good time for conversation. We find a lot of our conversation relate to things we are thankful for. I think this is our unconscious way of counterbalancing the trauma of the Alzheimer’s. It was a very nice evening. One of the things she said when we talked was that she had lied about something and wanted to explain. She went on to say that she had indicated on Tuesday night that she had not been bothered by Lucy’s comments, but the truth was that she had been bothered by the comment that Lucy felt even sorrier for Barry than for Mary Jane. She didn’t say this, but she doesn’t want to be a burden on me.

On a slightly different note, many decisions are influenced by Kate’s condition. For example, I have been planning to buy a new car next year and thought that I might even delay a little longer. My idea was that Kate may not be able to drive much longer and that I might trade in both cars when I buy a new one. This changed this week when I have significant repair bills on my car and have decided that I should buy a new car now. Kate asked me if I were planning to pass her car along to me. I told her I was not as it had so much more mileage than hers. I got to thinking later that she might have been thinking that her station wagon was getting to be too much for her and that she might do better with my car. Now I am beginning to wonder if getting her a smaller car might be an intermediate step. At the moment, I have decided against that.

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Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.

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Another Instance of Getting Lost

I ended quickly on the last entry because Kate called and said she was in the parking lot and didn’t feel like coming in at the time. As planned in the earlier conversation, we went to Casa Bella. We had our usual veal piccata along with amaretto cheese cake for dessert. For extra measure I decided to try their pistachio gelato which was good but not nearly as good as the cheesecake.

It turns out that Kate got lost as I has suspected. She drove around a long time and finally called the hostess for her meeting that she wasn’t coming. She was clearly frustrated, and I am sure, though she didn’t say so, that she attributed the problem as related to her Alzheimer’s. I commented over lunch that we know that she is geographically-challenged and that we can work harder to relieve any frustrations in that area. I also noted the conversation we had had with her behavioral psychologist commented on how well she does with the verbal area and that that is something that will work in her favor going forward since so much of day-in-day-out social activity relies on such skills. I also said that she might put greater emphasis on making scrapbooks and albums for the grandchildren as this is something she enjoys and that the grandchildren will appreciate in later years.

Having time at lunch in a place that has been special to us was just the right thing. Not surprisingly, she had thought of suggesting Casa Bella herself. She was quite calm during lunch and left for home relaxed and ready to tackle the family album that she and her brother Ken have worked on for the past 4-5 months. During Ken and Virginia’s visit to Knoxville this past week, Ken and Kate were able to make a good bit of headway. It now looks like they are into the final editing. I think they are both beginning to see the end. My guess is that they may let it go sometime in the next 2-3 weeks.

Because of their visit, I haven’t written anything about our visit to talk with Lillian Walters, the social worker at Kate’s physician’s office. The visit went well. Nothing of special note came out of it. We did not schedule another visit but Kate said she would prefer to call when she felt the need. Kate later told me she was glad I had gone with her although nothing occurred that makes me think it is good for me to be there. She began by asking Kate how she was doing, and Kate hesitantly said she had her ups and downs. This surprised me because I would have said she has done remarkably well. At the same time I recognize there are times of frustration that occur. We talked with Lillian about her irritability. She suggested that Kate give herself permission to excuse herself for some of this and to organize her life to minimize frustration. We talked about my doing more things and how Kate feels about that. One thing in particular was taking over the checking accounts. Kate said that was fine with her.

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Our Latest Doctor’s Appointment

I don’t know where the time has gone. We met with Dr. Reasoner last Wednesday afternoon, and I felt like I wanted to write down our thoughts following the meeting. I just haven’t gotten to it. In fact, I am getting ready to leave for Orlando today and may not write much now.

The key thing to say is that Kate felt much better after our meeting. While she felt as though she “could cry” after Dr. Furner’s  briefing, she felt like she was getting a reprieve. Since that time we both have felt better.

Dr. Reasoner asked Kate how she had been getting along, and Kate told her. Kate seemed very much at ease and comfortable with everything even before she asked Dr. Reasoner how far along she was in the disease. Dr. Reasoner told her she was very early and conveyed (or at least we inferred) that she has a good bit of good time ahead of her. We specifically talked about travel plans, and Dr. Reasoner said there would be no need to restrict ourselves for a long time to come.

Since that meeting, we have both seemed pretty much normal except that I continue to be very accepting of behavior that might have annoyed me before the diagnosis. She does continue to experience frustration with some tasks. She is working on a family photo album with her brother and has been bothered by his urge to finish. She doesn’t like to be rushed. This is one of the signs I had noticed some time ago.

Except for these things, life is very much the way it was before the diagnosis. On the whole, however, we have been more active in doing things since we have known about her AD. We have been to Trustus 3 times and planning to go to Town and Workshop in the next couple of weeks. We have eaten out a lot.

I should also say that I am prepared for us to notice that significant changes might occur in the next 3-5 years which means I still want us to push on doing things. Kate also talks more about her bucket list than before the diagnosis. In fact, I don’t think she had even used the term bucket list before then.

We are definitely committed to the trip to Scotland in May and the trip to Africa at the end of December and first 2 weeks of January. I am also beginning to think about New Zealand in the Fall 2012.

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Meeting with Social Worker

Yesterday Kate met with Lillian Walters, a social worker with a physician’s practice. Kate had previously known Lillian through counseling sessions a few years ago in connection with her depression. When I got home from seeing Dad at Life Care, she filled me in on the meeting with Lillian.

First of all, she was pleased with Lillian and how things went. She indicated that Lillian seemed to think of things that she had not thought of. I can’t begin to remember any order to what Kate told me, and I suspect she didn’t tell me in order either. Here are some of the things I remember.

Lillian asked about telling the children and friends. Kate indicated she didn’t plan to tell either until what we think is an appropriate time down the road. Lillian asked her why, and she said that she felt the children and friends would want to “mother” her. Kate has been sensitive to being told what to do by others. She doesn’t like it at all.

Lillian asked if there were anyone she felt she would be comfortable confiding in. Kate thought of two people at church, although she told me last night that she might not want to burden one because she has some current issues herself. The other one might be a better one to talk with. I asked her if she would do that before others knew. She said, “yes.”

Lillian asked her about planning for the future. Kate told her she was going to write her own obituary and that she would begin on that soon. She also asked if Kate had a bucket list. Kate indicated that we were creating that right now. She told Lillian that she was trying to simplify her life. As an example, Kate told her that she was not going to cook anymore. She went on to tell her about a couple of recent examples that led to too much frustration.

Kate also told her about our travel plans. Kate also indicated that as she progressed, we might take more cruises that would not be too taxing on her. She also indicated that we might be able to enjoy Chautauqua even after we feel overseas trips are not best.

Kate expressed satisfaction that she is with her physician’s practice. Dr. Reasoner, Lillian, and a psychiatrist in the practice have also been valuable resources from the past and will be in the future as well.

Kate told Lillian about our meeting on January 21 with Dr. Reasoner and how she directly, but sensitively, told her the results of the PET scan. Kate is still eager to learn as much as she can about how far into the disease she is. She told me she remembers watching Dr. Reasoner’s reaction when I had mentioned Kate’s getting lost on the way to the airport to meet Kevin and his family at Thanksgiving. Kate interpreted the reaction as an indication that this meant a strong sign of AD. Lillian told Kate something similar yesterday.

This afternoon at 2:15, we meet with Dr. Reasoner. I want to ask about her Aricept. She is currently taking half a tablet a day, and I thought I recalled that Dr. Reasoner said she would switch to a whole table in a month or so. Kate wants to ask Dr. Reasoner how far along she is in the disease. I am suspecting that will be a difficult question for Dr. Reasoner to answer, but she may be able to give some general guideline.

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Feeling Down

Not much to report, but I have experienced a little anxiety yesterday and today. That coincides with Kate’s not having a good day yesterday. We went to Ruby Tuesday last night. It was Valentine’s Day, but we had been to the Valentine’s Ball Sunday as our celebration. We didn’t talk a lot about how she was doing, but after our meal, I said, “You didn’t have a good day today.” She acknowledged I was right but didn’t say it had been bad. I think we are both thinking about how long we are going to have while things are “normal.” We both know it hasn’t really been normal for a while. She has been frustrated over her forgetfulness a long time. I would guess it has been about 2 years. She hasn’t said so, but she may also be thinking about other things than forgetfulness – things like increasing frustration with doing everyday tasks, especially things on the computer, the TV, or the phones.

Tomorrow she has her behavioral evaluation with the psychologist. That is designed to determine how broad the effects of AD are. I have felt she has been unable to function effectively for at least a year if not longer. Again we haven’t exchanged this information, but I think we both fear that she is further along in her journey than we want to believe. One indication is that I mentioned our plans for our trip to Tanzania in January and said that I wouldn’t be booking the trip for a little while although I wanted to check what we need to do regarding any inoculations that are necessary. She said that was good because she wanted to hear what Dr. Reasoner has to say about the progression of her AD at her next appointment on March 2. This is coupled with her comment the other night that indicated she had a question about whether or not she would be able to make that trip.

I asked her last night if she felt I was hovering over her. She said I had not and that she would let me know if that occurred. I can’t say that I have felt like doing everything for her, but I have wanted to be with her and have been more willing to help her with things than I was before the diagnosis. I also sense a difference in her. She seems more willing to seek my help with things. It’s too early to be sure about this, but I know we each feel so dependent on the other because we can’t let others know about the diagnosis just yet. I keep wondering how long we will keep it to ourselves. It could be quite a while, especially if the disease progresses slowly as we hope it will.

On Sunday afternoon we had a brief conversation in which I mentioned some blogs written by people with AD. She said that was something she wouldn’t want to do; however, she could see herself journaling. I encouraged her and will follow up to see if she starts this. I think this could be good for her.