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A Few People Know

This Thursday I went in to the church for a communications committee meeting. I spoke to one of the administrative assistants  who took me into the pastor’s conference room and asked if she was supposed to know something. I looked puzzled. She indicated I had said something about Kate in a conversation the previous weekend and wondered. She then asked if Kate were all right. I hesitated and then asked for her confidence and told her that Kate has Alzheimer’s. She seemed surprised, but I have suspected she has known since spoke with our pastor two years ago this summer.

The other thing to add now is that I believe Kate is noticeably worse now and that people are going to begin noticing that something is not right. I have decided to tell my friends Tom and Stan so they will understand some of the things that I am doing. I know they are puzzled by the degree to which we eat out, that I am taking Kate everywhere, and that we are not intending to buy another car. I am also thinking of telling Ellen. As Kate’s best friend, I think she needs to know.

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Back Home and Taking Stock

We arrived back home from our trip to New Zealand on Thursday night, March 12. It was a truly fantastic trip, everything I had hoped it would be and more. Here are a few summary observations that are relevant to how Kate did on the trip and the state of things today.

Besides simply making the observation that the trip went well, I need to say that my guiding assumptions for the trip turned out to be correct. I deliberately chose for us to do the trip on our own rather than going with a group like Overseas Adventure Travel. I did this based on the fact that I felt under a good bit of pressure on our last trip with OAT to South America. There were so many times each day that we had to meet the group at a specific time that it put undue pressure on me to see that Kate was ready. That, in turn, put pressure on her that she does not like. Then we are both uncomfortable.

Second, I decided that we would go without any rigid plans other than the places we would visit and the lodging. I felt that we would do it in a leisurely way without worrying about trying to do everything. We would simply enjoy what we were able to do, and this is exactly what we did.

These two things made the trip go well. Even so, I felt a good bit of pressure during the entire trip. Prior to this trip I thought this might be the last trip of this type and duration. I am convinced of this now. It is simply too stressful for both of us. I think I will focus on more cruises in the future.

I am thinking this in large measure because of issues surrounding packing and unpacking her suitcase. This has been a problem for me on each of the recent occasions we have traveled. It is hard (no impossible) for her to plan what she needs to take with her. It seems she invariably doesn’t take enough underwear or socks. On the trip to South America and this one, there were occasions she wore my underwear and socks. When I tried to encourage her to take an ample supply of both of these items before the trip, she was resentful of my trying to tell what she should do when she feels she knows how to handle this kind of matter.

Prior to our packing, I did get her to agree that I would do the packing if she would give me the clothes she was to take. I noticed that she seemed to have a disproportionate number of pants and few socks and undergarments. To the best of my memory, she took 12 pair of slacks, 2 bras, 2-3 pair of panties, and 2-3 pair of socks. I bought her a duffle bag that had a bottom compartment in which I put all the slacks and a few other things likes blouses or jackets. I bought several packing bags in which I put all the others things in the top part of the bag along with 2 pair of shoes.

I did not expect her to remember where the items were, but I did want her to let me get things out for her and put them back. Nevertheless, she would start pulling things out of the suitcase. If she didn’t find what she wanted. she would throw the things on the floor. This meant that I was routinely re-packing. As the trip progressed, I was able to gain some control over this. I was never completely successful. I think this problem would be minimized on a cruise where we would not have to pack and unpack so frequently.

Even though our trip was leisurely there were times we had to be some place. That meant that there were times that I needed to prod her to get her ready. She moves very slowly and doesn’t like me to rush her. That is just as true at home as it is on a trip.

Additionally, there are many things she doesn’t understand. That can lead to problems when you are traveling. For example, in the Auckland airport, they have a line with a camera that takes a picture to match with your picture on your passport. This was new to me as well; so I didn’t realize until it was happening that I was having my picture taken. At any rate, I walked up to a doorway something like the security doorways at airports. There was a mark on the floor prior to getting to the doorway and a sign that asked that people wait behind that line until the person ahead was finished. Kate didn’t see it and walked up right behind me. The camera was “confused because there were two people. I got a message that they couldn’t clear me, that I would have to have special assistance. That meant that I had to go around another way and leave Kate to go through the line by herself. She was confused as to what to do. I had to coach her from the inside of the area where she was going.

The next time we went through equipment like this I was able to get through without any problem, but I think she moved while her picture was being taken; so she had to seek special assistance. Again, that left me on one side while she was on the other. Fortunately, there was visibility; so I could direct her where to go for help.

I also worried that we would get separated in some of the places we visited and knew that she would not know how to tell somebody where she was staying.

Despite these things, we really did have a great time and are looking forward to subsequent trips though they will be easier to manage than this one.

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Sydney

We are at the end of our month-long trip to New Zealand and Sydney. We have had a wonderful time. It was everything I had wanted it to be. My decision to do this trip on our own was a wise one. It was also good that we planned to do it leisurely and not worry about trying to do everything.

I have had my hands full on the trip. It is especially hard to maintain any order. For example, when we arrived at a location, she would pull her clothes out of her suitcase and throw them on the floor. I am sure she was looking for something specific, but it makes it difficult to find things later on if they are scattered about the room.

Going through check-ins is a bit of a problem. She generally does not understand what she is supposed to do even when I give an explanation. When we were going through customs in Auckland, one person was supposed to walk through a screening device while the person behind waited behind a white line painted on the floor. I went through first to show her what to do. Instead of stopping at the line, she followed right behind me. This messed up my screening; so I had to go back and do it again.  After I got through the line, it turned out that she didn’t understand what she needed to do. We had to stop at a point while the scanner did a scan of our faces. She couldn’t get this right. There was no way for me to go back and help her. I had to get a customs official to go around and help her.

Something similar happened when we were taking a train someplace. She put ticket in the slot and then tried to walk through a different turnstile. These are little things, but it creates a lot for one person to handle. This is the kind of thing I had never thought about before. I am sure I will get used to it.

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A Follow-up Talk With Kevin

Two days after I talked with the children, Kevin called to talk. He expressed his concern about Kate and his support for me. He wanted to let me know that he did not want to interfere with our own plans for the future, but that he felt given his work, he wanted to do whatever was best in the years ahead. He also sent a letter a few days later expressing the same sentiment. I sent him an email saying that I intended to be very open with Jesse and him and would send a letter to them after our return from New Zealand. In that letter, I want to let them know the situation a little more fully and to suggest that we work together but that I would like to take the lead at this time. My thoughts are that there is no urgency right now. I want them to know that we have talked about a move to a retirement community, probably here in the Knoxville area. I also thought about a move to Texas to be near Kevin should the need arise. At the moment I feel like that is what we will ultimately do although I am uncertain as to the timing. That would depend on my own health.

One other thing to note is that Kate has been especially sensitive lately. She believes that I don’t think she can do anything independently. Most of the time she is expressing herself in a light, almost humorous way, but underlying it, she is feeling torn between wanting my help and wanting to be independent. I frequently hear her say something like, “See I can be observant too,” or “See I can still do things for myself.” I am developing a concern that this may worsen before it improves. I know that eventually she won’t care.

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Telling The Children

It was January 21, 2011, exactly three years ago that we received the news of Kate’s diagnosis. In many respects, we have fared much better than I might have expected. At that time Dr. Reasoner mentioned a 12-year time frame as something that was normal from beginning to end (at least that is what I recall). I am even more confident that finding out that she has AD was the best thing to do. We have lived differently than we might have done otherwise. I believe we have made the most of our time together. Just as important we continue to do so. That means I am optimistic that we do the same in the years ahead. As it was at the time of her diagnosis, I am concerned that 3 years from now life will be considerably different for us. I hope that when I write on the 6th anniversary of her diagnosis, I can say that I was too pessimistic, but it seems like she is showing more signs of decline.

As I may have noted in earlier entries, I decided that it was best to tell the children. I took action on Monday (Jan. 20). I sent them an email message to arrange a time for a phone call.

After a couple of email and text messages, we set a time yesterday for me to call them. I used my iPhone to make a conference call. It worked like a charm. I did this while Kate was getting her nails done.

I told the children that I wanted to tell them something that they may have already suspected or known. “Mom has Alzheimer’s.” I proceeded to tell them how long since the diagnosis and a little bit of how that had influenced our time together and that I wanted them to have the benefit of that knowledge as well.

I asked them if they had known or suspected. Jesse indicated that she had wondered. Her best friend had asked Kate when they were together about the time of her husband’s death. After that, Jesse had noticed a few things. Kevin said he remembered her getting lost when they flew in with the family for a visit for Thanksgiving several years ago. It struck him that that was like some of the patients he dealt with. Then he put it aside. He did notice that when we visited at Christmas, we went back to the hotel early. Thus, he wasn’t surprised, but he had not actually been thinking that she has Alzheimer’s.

I have had no communication with either of them until this afternoon when I sent a text message and got a reply from Kevin. State Farm sent a representative this afternoon to deliver a check for her car. When she (the rep) asked if we had made a decision about another car, Kate said we had decided not to buy another one. My text was to tell the children this good news.

I had been worried about telling Kate that we shouldn’t buy another one. A couple of weeks ago, she said something about another car. I told her that we should talk about that later. I haven’t said anything since then, and she hasn’t brought it up. On the other hand, she has told me that her friend, Ellen, had volunteered to take her anywhere she needs to go. She has also said something about my being her chauffeur. She said this in a positive, accepting way. I didn’t take it that she liked it, but that she was accepting it. Today’s news that she doesn’t expect us to buy another one is confirmation of that.

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Reaching A Decision

I sent an email to Jesse and Kevin telling them I would like to talk with them this week at their convenience. I also told them I would like for them not to say anything to Kate. I am sure that will make them wonder what is going on, but that may be a good thing. It should result in their responding more quickly than usual. At any rate, after debating with myself over and over again, I was finally convinced last week that I should let them know about Kate’s AD. In fact, last week I composed an email like the one I sent today and then deleted it before sending. I hadn’t decided against telling them, but I felt the timing last week might have been difficult because I knew she was going with the boys to Alabama where her husband is working for several months.

Tomorrow is a relevant day for Kate and me though I don’t intend to say anything to her. It was 3 years ago tomorrow, January 21, 2011, that we met with Dr. Reasoner to hear the news about her tests for AD. On balance, I think things have gone well during that time. I say that because we are still able to enjoy so many activities together. I fear the next 3 years will not be as good to us. Clearly she has declined since her diagnosis. I also feel she is at a turning point. I only hope I am wrong.

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To Tell Or Not To Tell

I continue to struggle with when to tell the children about Kate’s diagnosis. I am strongly leaning toward telling them soon. In fact, a few moments ago, I started an email telling them I wanted to have a conference call with them sometime this week. As I played with the exact wording of the email and my schedule this week, I decided I wasn’t quite ready and deleted the message. Perhaps I will try again tomorrow or another day this week.

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Moments of reality

Today Kate had an 8:45 am appointment with her primary doctor. Before going for my morning walk, I checked to see that she was awake and knew to get ready for her appointment. She was, and I turned on the TV to the Today Show.

When I returned, I found that she was up, had had her V8, and was eating her yogurt. This would have been about 7:40. She continued to get ready to go, and I reminded her that we would leave at 8:30. At 8:29, I told her it was time to go. She got frustrated with me and said harshly, “Just a minute.” After a few minutes I went into our bedroom where I could see that she was still not fully dressed. I reminded her we were to be there soon. Finally, at 8:45 she was ready but never hurried at all.

When we got to the doctor’s office, the receptionist indicated that we were late and that they would have to reschedule which we did (for a week from this Friday). I didn’t say anything. There was no need. Kate said she was sorry. When we pulled into our garage at home, I could see that she was depressed. I told her that it was all right, that this was a situation where the consequences were inconsequential. It was clear in reading her thoughts, however, that it really wasn’t the consequences she was worried about; she saw this as another sign of the progression of her AD.

At home, I got my things together to go to the office. I gave her a hug. We didn’t need words. We both understood the situation. I believe this is only a precursor to many more of these times. It may even be sadder when the AD prevents her from feeling low. I really don’t know which is worse. Now I am at the office and concerned that I should have stayed with her.

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Bouncing Back

I am sorry about that I haven’t written anything since before Christmas. I suppose that is an indication that nothing of major significance has occurred in the time frame. We did learn that Kate’s car was totaled and that they will send us a check for the estimated value of the car. Kate has raised the issue of getting another car, and I really think this is the time for her to stop driving. When she brought it up about a week ago, I suggested we talk about it later. She hasn’t brought it up again, and neither have I.

One good thing happened. She went to lunch with her friend, Ellen, on Monday and told her about the accident. Ellen volunteered to take Kate wherever she wanted to go. That led to Kate’s asking her to lunch on Friday while I had lunch with Mark Harrington. They went to Macaroni Grill for lunch, to Coldwater Creek for shopping, and then to a movie (Philomena). Kate got back home around 4:15 and had had a wonderful time. She has continued to talk about how much fun they had and what a good friend Ellen is. She also talked about how smart Ellen is, something she notes about many people she is around.

I can’t help wondering if Ellen may not be the first person with whom Kate shares her secret regarding her AD. I think that would be a relief for Kate. She still doesn’t want to make this public.

At lunch today Kate mentioned once again that she thought Ellen would really enjoy taking her places. She told Ellen that sometimes she just likes to take her computer to the library and work there for a change. Ellen said she would love to do that herself. Kate also talked about how comfortable she feels talking with Ellen.

This past Thursday I took Ellen to her PEO meeting. A few days before, I saw an email from the chapter president who asked her to bring some old archival documents that Kate had been keeping in our attic. Knowing that she would forget, I went to the attic and got them ready the day before the meeting. Then I put them in the car and took them in when I took her to the meeting. Inside I spoke briefly with one of the members who is planning to move to Florida before the next PEO meeting. I asked her how she was doing, and she said she was not doing well, that she was losing her husband who has dementia. I expressed concern and said that I would say an extra prayer for them. She responded by saying she would be praying for me too. Her look and the way she said it made it clear that she knows Kate’s situation as well. Previously I may have mentioned that Shirley Hazel probably knows because she had mentioned to me one time that Kate was having memory problems.

This brings to mind something that I have stated before and that is Kate doesn’t know how far along she is. She knows she is frustrated and finds herself less and less able to do routine things, but she still wants to make commitments or “plans for things in the future. After Thursday’s PEO meeting she told me that she had signed up for the program in December. That means she will host and present the program. At first I thought she might be thinking of doing a program on our trip to New Zealand, but she intends to do one on family Christmas traditions. I think that is one she will be able to do rather easily. It will also permit the other members to share their own family traditions. My point, however, is that she doesn’t begin to think that this task might be challenging for her at that time.

I also notice that she continues to be more apathetic about some things. For example, it wasn’t until this afternoon that she got her new clothes from Coldwater Creek out of the bag. In the past, she would have come right in and taken them out of the bag. She has gotten much better about washing clothes which has become “necessary” since losing our housekeeper. One thing she is not good about, however, is getting the clothes out of the washing machine and/or the dryer. This past week at least 3 days past after she had washed clothes that they were ready to be put up.

She is more irritable than she used to be. For example, as we were driving to lunch today, she said we need to go by a frame shop. I innocently asked why we needed to go there, and she got miffed and said, “Let’s not talk about it.” When we got home, I discovered that she wanted to stop by to look at a piece of artwork to go above the door from our family room into the hallway leading to our bedroom. I then recalled that she has mentioned that a number of times over the past year or more. She thought I should remember that even though she hardly ever mentions it.

On the other hand, I continue to find that she doesn’t make connections well. If we are talking about something or someone, and a few moments later I make a general reference like saying “she,” Kate doesn’t know who I am talking about.

We were with her brother, Ben, over the Christmas holiday. Everything went well. He went with us to Fort Worth where we went to Sadie’s Cafe for lunch, a cousin’s for dinner, and Sunday lunch with Naomi, a very dear friend of Kate’s mother. After dropping him off in New Braunfels and our heading back to Houston, Kate remarked at how smart Ken is and that she had a new appreciation for him. I like her feeling good about her brother and other people but sad that I think it comes because she finds herself so unable to do many things.

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Discouraging week

Although we have had a week with some good moments, Kate has been unusually discouraged. In her words, “frustrated.” Leaving her purse at 2 restaurants last weekend, losing her tickets to the symphony concert last week (something I hadn’t mentioned before), and auto accident were the key incidents. In addition, however, she has had great difficulty working on the computer. Specifically, she has been working on a Christmas eCard to send to our friends. She has selected a variety of pictures taken since the early days of our marriage up to the present time; however, she keeps revising and makes new mistakes each time she makes a change.

Her discouragement is reflected in a withdrawal. She has been playing Free Cell on the computer and is doing nothing that I can see to prepare for our departure in the morning at 9:30 for the airport for our flight to San Antonio. For me one of the most disturbing aspects of this withdrawal is a withdrawal from me as well. Normally, she seeks me for comfort. In this case, she is simply withdrawing and rather uncommunicative. I have tried to be supportive, but she is not too responsive. I should say, however, that before we went to church this morning she gave me a big hug and said something that conveyed how dependent she is on me.

The week’s events have left me discouraged as well. It is a little the way I felt with Dad when he was having a bad day. A bad day for him was a bad day for me.