Even More

Several things have happened since my last post. I don’t have much time right now, but I would like to jot down some events that I may come back to later. The first involves the neighborhood association newsletter. This is something she started working on early last fall. We just got the printed newsletter back from Staples. A week ago Friday or Saturday, she asked for my help with two things. The first was to get her newsletter out. The second was to help her take care of her obligations for her grant applicants for PEO. I told her I would do so. She had a terrible time both comprehending and remembering what it is she is to do. She asked me to listen in on a phone conversation with the woman who chairs the grants committee so that I would know what she is to do. We did that. Then she got confused again and had to call her back another time. We got it straightened out. She has to write two letters of recommendation. She’s already done one and still needs to do another.

On Thursday, I reminded her that she had an appointment to get her hair done. Although I had reminded her several times, it slipped her mind. She left in the car. I got a call a short time later. She couldn’t remember exactly where the hairdresser’s salon is located. I talked her through it, and she finally recognized where she was going. This reinforced our intention to get her to use the GPS when she is going places. We both agreed that I would enter a number of places into the GPS to make it easier for her each time she needs to go someplace. I used it today to help her get to a neighbor’s house. It looks like it is not as user-friendly as she needs; so I will look for something simpler.

All these things tell me that a year from now she is bound to be in a situation where people begin to recognize her condition. I will be especially interested in the children when we are together next month.

And More Signs

Late yesterday afternoon we returned from a trip to see Jesse in Memphis and Dorothy Hinely in Jonesboro. In the car I reminded Kate that she had a PEO meeting tomorrow morning. As I expected, she had forgotten. She couldn’t remember where they were meeting. She called someone and found out it is in Collierville, southeast of Knoxville. She called a couple of people to see if she could get a ride. That was a relief. I couldn’t have let her drive alone.

We went to Hathaway’s for dinner and had a special time. She went right to bed on our return home.

This morning I could tell she was somewhat disturbed. It turns out she had misplaced her PEO bag with all of her PEO information that she apparently is supposed to have at each meeting. All I know is that she takes it with her. Then she couldn’t find her credit cards and driver’s license. After taking her to meet her ride, I came back home and found her cards except for her driver’s license. In addition, she misplaced her ATM card a week or so before we went to Memphis. She had only had the replacement card a couple of weeks before losing it. She still has not found it. That was at least the third replacement ATM card she has had in the past year. If we don’t find it, we will have to get another one.

This continues to reinforce what I have said so many times. The person with AD really does recognize the problem and suffers dearly from it. It is just as frustrating to her as it is to me. We are reaching a point at which I need to take charge of everything. This is a challenge for me. For example, I really need to make sure she has her purse when we leave a restaurant or some other place; however, I just don’t think about such things. I will have to learn.

The other thing that still holds true is that her biggest problem is not in the kinds of things she has to remember when she is with people. She can handle ordinary interaction without people suspecting she has AD. The big problem is how well she functions throughout the day. She simply can’t get things done. I have to believe that within the year she is going to need to give up her work with the neighborhood association. I have a hard time imagining that she will get the directory done, and newsletters will be harder and harder to complete.

More Signs

Two days ago on Wednesday, we had another unpleasant experience. Dad was to receive his 65-year pin and certificate from the Masonic lodge. They went to Mountain Valley to present it. We were scheduled to meet at 3:00 pm. I left the house before Kate in order to get Dad dressed for the occasion. As I was driving out of the driveway, I realized it had been a while since she had been to Mountain Valley. I called her to make sure she knew how to get there. I gave her instructions. While Dad and I were waiting for her and the Masons, I received a call from her. She was lost though pretty close. I gave her instructions again. When she didn’t show up on time, we went ahead with the ceremony. After the Masons left, I called her and got no answer. I called several times. I even texted her to call me. She finally called me. This was now about 3:30 or later. She was located further away than when we spoke earlier. I told her to wait for me, and I would get her.

I got there and asked her to follow me back to Mountain Valley. I also set the address in her GPS but didn’t realize the sound was off. Just before getting to back to Life Care, I made a right turn. There was one car in between us. She didn’t see me turn. I called and called her but got no answer. It turned out that she had put her purse with her phone in my car thinking that she would drive back with me instead of following me. (I don’t know what she thought about how we would get her car back.) Finally she called me from a phone at a car wash that was about 2/10 of a mile from where I was waiting at a gas station. I told her to stay put and I would walk to her and drive her in her car back to where I was. I did so and then she followed me back to Dad’s where we visited with him while he ate his dinner. When we left, she was feeling quite low. I told her I was going to take her to dinner at Hathaway’s, something we do frequently on Wednesday nights. She was pleased. We had a nice evening together, but it was a frustrating afternoon for both of us.

The experience makes me concerned about her driving anywhere. She can get lost at any time. She has resolved to start using the GPS more regularly, but I am worried she will not be able to remember how to use it. This is just a small sign of what lies ahead. It’s going to be a rough road.

A First Sign (or second)

This afternoon I dropped by Shirley Hazel’s house. Kate had left her computer in her car the other day. When I picked it up, Shirley said very nicely (as though she were trying to send me a message gently in case I didn’t know) that “”Kate is getting so forgetful.” I said, “I know.” Then she went on to say that she had enjoyed working with her. They work together to interview candidates for PEO grants to continue their college education. In addition to interviewing them, they also assist in getting the applications in to the national office and shepherding the applications to their completion. They have been successful several times. Furthermore, they have passed along the names of good candidates to other chapters who might nominate them. Each chapter is entitled to nominate only two candidates.

At any rate this is the first contact I have had with someone who mentioned the memory issue. Of course, that may have been what our pastor had in mind when he asked me if Kate were all right two summers ago. Although I feel confident that most people would not suspect that she has AD, I do recognize that anyone who works closely with her is bound to suspect. It makes me wonder again about our children when we are together in Jackson Hole in June. It would be easy for her to do or say something that would make them suspicious. I have even begun to wonder if I should break down and tell the children at some point after our vacation with them is over. I really don’t want to break my agreement with Kate that they not be told. On the other hand, they are not in touch a lot, and it would be nice if they knew that time is running out. In that respect, I am the luckiest person of all because I know and am able to make the very most of our time together. It has made all the difference in the world. Were it not for that knowledge I would probably be fuming a good bit over the many things she does. I clearly find some of these things annoying; however, I always stop and think that she can’t help it. That helps me to be more patient with her.

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.

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.

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.

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.

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.”

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.