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Life can be confusing.

In the past two weeks I have noticed Kate’s making a more concerted effort to be on time and do things right. For example, early this week a neighbor called to invite Kate to go with her to an orchid garden of some type. Yesterday she called, and I answered the phone. She said the tell Kate that she would be by to get her at 9:00 this morning and that the admission fee is $6 that would be applied to any purchases she might make. They were going to lunch afterwards. I was a bit uneasy because this is during the time that I would be at the Y. It was clear that she was confident that all would go well, but I very carefully prepared her to take her debit card and some cash. I put them on top of her dresser in our bedroom. I also put a sticky note with tipping information. I told her it would probably be best if she just put the cards and money in a pocket rather than carrying a purse thinking that she might leave the purse someplace.

This morning I was prepared to set the alarm for her to make sure she got up. I also set reminders on my phone for me to call her to make sure that she was ready. The good news is that she woke up when my alarm went off at 5:00. She asked that I turn the radio on. She got up and got back into the bed with the radio still on. I was calling her around 8:30 when I got a call from her. She was telling me she had found the receipt for her lunch with Ellen on Wednesday. She also said she was dressed and ready for our neighbor.

At 9:15, I received a phone call. She asked where I put her card and money. I told her it was on the dresser. She said it was not there now and that her ride was there. She hung up to look for it. I won’t know until this afternoon if she found them or if our neighbor told her she would pay and Kate could reimburse her.

All of this follows the 3-4 crises we had 10 days to two weeks ago as she was trying to get ready to go out. I am trying to interpret everything that is going on right now. It is interesting that Kate and I both told people about her condition within one day of each other. I told Tom and Stan on Monday of last week. She told Ellen on Tuesday of last week. Perhaps we both felt the crises of the preceding few days was a sign that Kate’s condition is getting worse, and we just had to tell those closest to us.

I also think Kate is frightened because she is clear-headed enough to grasp that she is losing her ability to do many things. Naturally, this affects me as well. As I always said in connection with my visits to Dad, when he was doing well, I was doing well.

 

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Kate Tells Her Best Friend

I was about to write a new update when I saw that I hadn’t mentioned that last Tuesday, April 15, Kate told Ellen about her Alzheimer’s. They had had lunch the day before. I am not sure if anything special happened, but when I got home that afternoon, Kate told me that she was going to call Ellen about having lunch the next day and wanted to know if I could join them. I told her I could, and the she said she wanted to ask her over to the house following lunch. I suspected (and have also learned) that she might be telling Ellen. She only said, “Let’s talk about it tomorrow.” (This very frequent pattern of saying, “Let’s not talk about it now” or “Let’s talk about it later” I take as an indication of the frustration she feels when she tries to explain herself.) The next morning she told me she was going to tell Ellen.

After coming home from lunch, the three of us chatted for a short time before Kate simply said, “I wanted you to know that I have Alzheimer’s.” Ellen did not react. I was concerned about the way she might react because it might clue Kate in that I had already told Ellen. Later Kate told me she appreciated the way Ellen had reacted. She didn’t want anything that indicated great surprise or pity.

It was interesting to me that as Kate provided a little more information. She told Ellen that she and I were adjusting well and that our lives had not changed in any way since the diagnosis. Of course, that is not true. They have changed a lot. I also felt as though the way she expressed it reinforced my sense that Kate does not recognize how far along she really is. She is still thinking about years ahead when we do things with the grandchildren etc. On the other hand, I am thinking this summer may be the last summer that we host or travel with the grandchildren. That is because it is hard for me to take care of her and the grandchildren. I hope I am wrong. It could be that because the grandchildren are growing up that they will need less attention. As they say, “time will tell.”

One other related thing from the conversation with Ellen is that Kate told her that Ken also has Alzheimer’s but that he is further along than she. I don’t know how she got this impression. It is certainly consistent with other things about which she gets confused. The reality is that they had trouble diagnosing Ken’s Alzheimer’s because it is in such an early stage.

Kate’s current behavioral symptoms cause me to wonder if she is now entering that stage where she really doesn’t recognize that she has Alzheimer’s. This is hard to express. I don’t believe that she will really reach that stage until much later. I do think, however, that there might be a gradual progression toward that end and that I am observing the beginnings of that process. One of the things that is happening is that she is periodically irritated by my helping her. She points out to me that she does not need my help on most things. I am trying to be more careful in discriminating those things for which she does and does not need assistance. One of the many challenges for the caregiver is just this. There are so many things that the patient does wrong and also for which she asks help that the caregiver tends to extend that to more things than are necessary. That, in turn, takes away from the patient’s sense of autonomy. I’m going to be working on this. The other side of the coin is that the patient easily grasps some areas where she needs help but doesn’t see others. As with most things, it is an adjustment for both patient and caregiver.

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Telling Close Friends

I have taken another step in revealing Kate’s Alzheimer’s to others. Last Thursday, I told Mark Harrington when we had lunch. Yesterday I told Tom Robinson and Stan Grady with whom I have had a friendship since TCU. We have been in an email exchange for several years. Tom and Stan have corresponded with each other since they were colleagues early in their academic careers. Here is the email I sent to them yesterday.

Over the course of our email exchange we have spoken about many things going on in our lives – what we do during the day, our personal thoughts about weighty and not-so-weighty matters, and an increasing array of health and wellness issues. Today I would like to tell you about something that I have kept from you. Kate has Alzheimer’s. She has not wanted, and still does not want, anyone to know.

Next Monday, April 21, it will have been three years since her diagnosis. As you would guess, we had suspected as much for as long as 3-6 years before. Kate was convinced of it quite early. I kept reassuring her that we all have memory problems. I also had a measure of doubt because the most common symptoms I was noticing did not seem to involve a loss of memory. It was simply that she was leading what I can only describe as a dysfunctional life.

Our lives changed the moment we heard the doctor tell us the news. Prior to that time I had been annoyed at the little things she was doing or not doing. Once I knew she had AD I became more understanding. We both decided we would make the most of the time we have together. From that point until now, I have pulled away from the office and have spent all the time I can with her.

This should help explain a few things about our life style that you may have wondered about – the fact that we eat out for all our meals except breakfast, the trips we take, my transporting Kate to the doctor, dentist, club meetings, our deciding not to buy another car, my choice of the type of trip we took to New Zealand, and my thoughts about cruising in the future. This doesn’t even begin to outline all the different adjustments that she and I have made, and, of course, this is only the beginning.

I would ask that you keep this to yourselves except for sharing this information with Angie and Shirley. It would hurt Kate deeply if she knew that I had betrayed her confidence. I will tell Bruce at a later date. Until now the only people I have told are our children and her best friend, Ellen. I didn’t tell the children until just before we left for NZ. I told Ellen a little over a week ago. I felt these people needed to know so that they could do as I have done – to make the most of the time we have left.

In that respect, and that only, I can say that knowing she has Alzheimer’s has brought us some very special times together. I can say that we have never been happier. On the other hand, in the past few months I am seeing a noticeable deterioration in her condition. For me it represents a sign of more challenging times ahead. Perhaps that is a factor in my letting you in on this now.

I am sorry to start the day on such a downer, but I just felt the time had come for me to open up.

Richard

 

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More Panic

The issue of Kate’s weight and inability to get into her clothes (slacks specifically) continued yesterday. This time we were getting ready to go to dinner. Once again, she got frustrated because she couldn’t find any slacks that fit her. I told her that I had put aside the ones she wore on Friday night because they did fit her. They were part of the ones we recently bought. When I went to the closet to get them, they were missing from the hanger on which I had hung them. I looked around her room (the office) and the closet and couldn’t find them. I did, however, find a pair that were marked a 12 which should fit. They were a bit tight, but she was able to wear them. During this episode, she was in tears, whimpering would be a better way to describe it. It was very much like the day before but not as severe as the one at Lowe’s the night before that.

I should add that we had a very nice dinner. I’m not referring to the meal itself though it was good. I mean she was calm, and we both enjoyed ourselves and being together. We are spending a considerable amount of money eating out, but it is not just the food that I am after. I am trying to maximize the amount of quality time we have together. It seems that it is easiest when we are doing something together like dining. We are able to talk more easily with one another, and she is able to have some time when she is not personally frustrated or getting messages from me that she has done something wrong.

This morning getting ready for church, Kate encountered more problems finding something to wear. I was just about ready to tell her she might be better to stay at home (which would have been very difficult to say without offending her) when I found a pair of slacks that I thought might work. They did even though she was unable to zip them up all the way. We still haven’t found the new ones she wore Friday night. I did take a step forward when I told her I wanted to help her. Although she has adamantly refused before, she was sufficiently frustrated to accept. We agreed that we would work together to clean up her room and identify the clothes she is able to wear.

So how am I feeling about all this? I must admit there is a little panic for me as well. I recognize that her condition is worsening and that she is aware of it, but she still wants to maintain whatever independence she is able to muster. I find that every time I try to say something to curb one of the behaviors I think is getting out of hand, she is offended. I try to accept whatever she wants to do. This means she eats more than she should. I am less sure that my feelings about her purchases for the yard are appropriate. She is giving the yard more color; it occupies her time, and serves as therapy. In that respect, it is pretty cheap.

I also have wondered if my telling Ellen about Kate’s diagnosis might have been for me to have someone from whom I don’t have to hide things. I have also decided to tell Tom and Stan. They would be my closest mail friends. I do believe telling them is a benefit to me. It certainly doesn’t change things for Kate. This coming Saturday Jan and Scott Greeley are coming from Nashville for lunch. I am considering telling them simply to make them aware since we are so close to them. Kate’s and Scott’s mothers were pregnant with them in 1940. I think they should know.

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Crisis Over

Kate’s PEO meeting went well. Her club enjoys coming here because they have more space for their meeting than at most of the other homes where they meet. This meant that Kate received much appreciation for hosting the meeting. She was pleased and happy when I returned to the house. This meant that I felt much better myself. It is amazing how my feelings rise and fall with hers. It reminds me of the ups and downs I would have after visiting Dad each day..

Yesterday she approached something else that troubled her although nothing like the meltdown the night before PEO. She was picking out clothes to wear to a benefit for a summer camp experience for cancer patients at one of our local hospitals. She couldn’t find anything to wear. She has gained weight that is making it especially difficult or impossible to get into her slacks. Earlier in the week I had brought home 3 new pair of slacks that we had purchased 2 weeks earlier. She had no idea where they were. Her office where she keeps her clothes has clothes thrown on the floor and bed and chairs, not in nice tidy ways but just thrown there. It is not surprising she can’t find anything. I feel discouraged because I we just bought 4-5 new tops and 5 pair of slacks, and we can’t even find them in the mess. Actually, we still have to pick up 2 remaining pair of slacks. I’ll make sure I know where they are.

One of my problems is that I have been so slow to take over things like her clothes closet. I think that is largely because it doesn’t come naturally to me as well as the fact that she doesn’t want me to do everything. Yesterday I did tell her I would help her organize her clothes so that she would know where to find them.

That doesn’t address the fundamental problem concerning her weight. She thinks she is cutting down, but she continues to eat more than she needs to sustain her weight. I asked her last night if I could help her. She said she wanted to do it herself and that she didn’t want me to stop her from eating things she chooses. This is the position I have taken up to now. Perhaps this will just work its way out. I fear, however, that this won’t happen until she has gained even more weight.

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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.

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Telling Her Best Friend

Up until now, the only people I have told about Kate’s diagnosis are Jesse and Kevin. I had also told our pastor when he asked me if Kate was all right almost two years ago. More recently, I told an administrative assistant at the church, who also had asked if everything were all right. Two days ago, however, I received a call from Ellen who was just checking in since she hadn’t heard from us in a few days. Kate was outside working with her plants. The past couple of weeks I had been thinking it was time for me to let her know about Kate, but I wasn’t sure how I was going to do it since Kate and I are normally together when we are with Ellen. I was also concerned that if I called and left a message that Ellen might call the house and get Kate and mention that I had called.

Ellen’s call presented the perfect opportunity, and I took it. The only thing I regret is that I could not have done it face-to-face and done it more gently. She was both surprised and moved as you might expect of a best friend. In our conversation she did say that she had noticed some signs, but she had assumed it was just the normal thing that happens to us as we age. I was very clear that Kate did not want anyone to know, not even our children. I did tell her that I had told them just before we went to New Zealand.

Ellen wanted to know what she could do; she would do anything. I told her there wasn’t anything special she needed to do, just continue to be a good friend. We did talk about opportunities for them to go to lunch or shop for plants or anything like that.

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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.

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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.