2014 | - Part 8

April 10, 2014March 3, 2018

Mini-Crisis

Although Ellen was surprised about Kate’s diagnosis, she did say that looking back she could see signs. She is now seeing more signs. Yesterday, she came by to pick up Kate for a visitation of a friend who died last week. Kate was not ready when she arrived. I invited her in. Kate was in something of a mild panic over not being able to find any slacks that fit her. A couple of times she called to me for help. She was also making noises that have become commonplace. It is hard to describe. They are something of a groan. Before Ellen had arrived, I had mentioned that I thought she was dressed too casually. She changed. She got a jacket that didn’t quite match what she was wearing. I suggested she might try something else. Then she found something that was better but not just right. I let her go out with it.

We agreed that they would call me when they were finished, and I would meet them for dinner. When they got back to the house, we chatted outside on the patio for a few minutes. When Kate went inside to change clothes, Ellen told me that the day before, Ellen reminded her that they needed to call me even though they had just done so only minutes before. She said that Kate said, “”My short-term memory is really going.”

The biggest crisis we have had occurred last night. Kate is hosting her PEO meeting this morning. This was a last-minute change because the person who was to host was unable to do it. Kate’s immediate thought when she was asked to do it was the yard. She always wants to put the emphasis on the yard. I’m not saying this is a bad thing, but that she then forgets to do things on the inside of the house that need doing. I tried to encourage her to address some of the things to no avail. The bottom line is that she still did not have everything ready late yesterday afternoon. We went over to Panera’ for a quick dinner. I didn’t notice anything special until we were nearly finished. She had a depressed expression on her face. She would look down and put her hand to her head. My interpretation is that she was thinking about all the things she had to do, how difficult it is for her to do them, and how little time she had. This is something I have observed before. I know that she doesn’t like for me to talk. She just wants to be left on her own to get hold of herself. When I asked if she were ready to leave, she said she needed a little more time to calm down. We took another 5-10 minutes, and she said she was ready.

We had planned to go to Lowe’s for a few more plants, something I thought was crazy since it was about 7:00 pm. I asked her if she wanted to go home first. She said yes. We sat on the love seat in the family room and cuddled without talking. From the time we got up to leave Panera’s she was shaking like she was cold. This seemed to ease after we sat for a while at home. She said she was ready to go to Lowe’s.

When we got there, she was shivering and wandered down the aisles looking for plants. When she picked up a plant that was quite different from what she had said she wanted, I told her this was not like what she had said she wanted. She broke into tears and said, “”There’s not going to be anything left that I can do.” I held her a few moments. Then she continued to look for plants even though she was still continuing to cry.

At this point it was clear to me that she is frightened about what is happening to her and what still lies ahead. In the past few months, it had seemed to me that she had entered a phase that was a little more like people are referring to when they say, “At least she doesn’t know.” I have been adamant about saying that Alzheimer’s patients do in fact know for a long time before they don’t know. I was beginning to think that Kate was getting to that point.

It is also clear that Kate believes she is not as far along as she is, but she is aware of her increasing deterioration in memory and function.

So how do feel this morning. Not good. I feel a little tense. I feel as though my heart is beating faster than it usually does. It tears me up to see her go through this. If only there were some way to avoid going through this. I know there are harder days ahead. I am now wondering if the hardest ones are in this phase where the decline is becoming more noticeable, and she has to think about this like someone going to the gas chamber or electric chair. Because I see it as frightening to her, it is frightening to me.

March 27, 2014January 4, 2018

Frustrations, Annoyance, No Way to Discuss

We just got home from lunch and running several errands. The last trip was to Lowe’s where we had an unpleasant experience that I fear may be a hint of things to come. The start of the story is that last week I took Kate to get some new clothes. We are going to more receptions that require dressy casual attire, and she has gained weight and can’t get into many of her old clothes. We spent a total of $2,200. My general style is to take great care with the things I buy. That has never been here style but it is getting worse with the Alzheimer’s. Today she put on one of the tops she had bought. After we came home from getting her hair cut this morning, I went to the office for an hour. When I got home, I found her pruning shrubs in the backyard. She was still wearing the new top. I resisted saying anything.

This afternoon we went to Lowe’s to check on delivery of compost. While I was checking, she was picking up plants. The first thing I saw was dirt from the plants on her new top. I said something to her about it and started to dust it off when she got upset. We went ahead and got in the car. On the way home, she talked about various ways she was going to be able to get new plants. She started with a taxi. Then she talked about walking to Lowe’s and bringing the plants back home in one of their “grocery carts.” Then she said she was going to buy her own car. When we got home, I tried to tell her that I didn’t intend to stop her from buying plants that I just wanted to get her blouse cleaned off. She said she just didn’t understand. I stopped trying to explain. It is just no use.

This is the second time I recall that I said something that hurt her. The first was on the New Zealand trip. We were browsing in a gift shop when she wanted to buy a small tin box with a picture of a cat on the top. This was early in the trip; so I told her she might want to think about her priorities in things she would want over the whole time we would be gone because we wouldn’t have room to carry everything that she might want. I didn’t mean at all that she couldn’t buy the box. She didn’t buy it, but she was unhappy and told me she couldn’t understand why I wouldn’t let her buy it. Not only that but she brought it up several other times in the days following. It obviously was important to her.

I find myself frustrated by things, but I can’t say anything or I will hurt her. She, on the other hand, feels annoyed with me, and feels I am controlling her life. She brings this up periodically and is proud to point out the things she knows and can do. I have always said that people with Alzheimer’s know at the beginning that they are not able to do things or remember things the way they should. I still believe this, but I think she is beginning to enter the stage where she believes she is far more capable than she is. That is hard for me to take.

March 23, 2014March 3, 2018

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.

March 10, 2014January 4, 2018

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.

January 21, 2014March 3, 2018

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.