My Emotions

I like to think that I am getting along pretty well, and I really am. However, I try to be honest with myself and with others that I am not unemotional in my response to Kate’s AD. We are at Panera right now. We came in through a side door rather than the main entrance that is almost directly in front of the counter where you place your order. For that reason, I generally assume that no one sees us coming in.

As usual, I came in, picked out our regular table, arranged it so that Kate would be positioned with minimal glare on her iPad, put here iPad at her place, and then went to the counter to order. I was surprised that before I could order, the person behind the counter said she had my blueberry muffin. I said, “I can’t believe you saw me come in. Who saw me?” Two people’s hands went up.”
When I got back to the table with Kate’s muffin, I thought a moment. One of the young women who raised her hand is Kelcie. She is leaving this Saturday to go back to Idaho where her husband is an undergrad at Brigham Young University. She and others have been so very nice to us. I decided I should go back and express my appreciation. She was talking with three others behind the counter. Each of them was there when I ordered. I asked Kelcie if she knew that Kate has AD. She did not, but said she knew something was not right. I told her and the others with her that I like for people to know just in case something unusual were to happen. Then I said, “I just wanted you to know how much we appreciate how nice you have been to her and to me.” Without the slightest warning, tears welled up in my eyes, and I choked up so that I could hardly get the words out.

I am a naturally tender kind of person; so choking up is not unheard of for me. I am touched by lots of things like movies, plays, funerals, and music. This happened to me when the doctor first told us about Kate’s diagnosis. It happened when I told my staff about her. After living with this for so long now, I don’t have this kind of experience very often. When I do it is typically when I am alone or in an audience. For that reason, I was surprised when this happened. It caught me off guard.

This is a personal reminder of how sensitive I am. That’s probably a good thing.

More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

An Emotional Morning

Both the morning worship service and the morning lecture were emotional for both of us. Father Boyle, our preacher of the week, is a story teller. His sermons are filled with various stories from his work with gangs in LA. Each one is used to reinforce a point. This morning’s sermon topic dealt with living in the moment. He made great use of the word “now” in his message. The message and the stories touched me deeply in that I know this is our last stay at Chautauqua and also that we have been living in the moment (at least trying to) since Kate’s diagnosis. I had tears in my eyes most of the time he was speaking. I don’t know that Kate shed any tears, but she was touched as well. Her expressions were audible ones. Those have become quite common over the past few years

I never thought the lecture itself would be an emotional experience. Perhaps I should have expected it since I knew that music was involved. The first thing that brought tears was Jane Pauley’s singing of “The Way We Were.” When she appeared on stage on Monday, Roger had said she was going to sing today, but she denied it. Apparently, she was having second thoughts knowing that the audience would no doubt have some talented musicians among them. The lyrics were written by Marilyn and Alan Bergman. She was ill and couldn’t be there, but her husband was a delightful person, and their relationship was itself a touching story. He sang parts of a number of their songs and explained how they came to be. The last portion of the “lecture” Bergman sat on a stool beside the piano and sang to of his songs. The last one was one that he and his wife and written for each other. When it ended, even the moderator said that was a fitting end and did not ask for Q&A, a unique occurrence indeed. I noticed a man to my right on the row in front of him wiping his eyes. The woman next to me saw me wiping my eyes. The man directly in front of her had turned around and noticed my tears. I then told the woman next to me that I was especially emotional because my wife has Alzheimer’s and this is our last trip to Chautauqua. She told me her husband died of Alzheimer’s. She wished me well. I gave her a hug. Then Kate and I reflected on the beautiful morning we had had.

Continued Problem Getting Ready

Last night we were going out to eat. As I was getting ready, I thought about Kate’s new clothes that we bought several months ago and that she has not been wearing. (I think she simply doesn’t remember she has them.) I called to her and went to her bathroom where she was starting to get ready. When I called she answered with irritation. She wanted to know what I wanted. Before I could begin to explain, I could see that she was breathing more heavily than normal and appeared stressed. She went on to say she just wanted to be ready on time and that she was having to work so hard to please me. She walked away from me. I spoke to her in a gentle voice so as not to further aggravate her and told her that I was just thinking she might want to see if her new clothes would be something she would want to wear. Then I left to get ready myself. When she had dressed, it turns out that she found a new dress and jacket. She looked great. She was also in a good humor.

This experience was the most striking example of the stress she experiences when we are going places. It was more than just a panic attack this time. It was almost as if she were frightened of me as if I was going to abuse her. This frightened me. The last thing I want is for her to think of me as her master. I will write more later to explain that earlier in the day we had had an experience buying more plants in which I had been bothered, and she picked up on it.

More Sharing the News

This morning I had a long phone conversation about Kate with Scott and Jan. This was a follow up to my conversation with Scott on Wednesday afternoon. They indicated they had suspected something after our April visit. They couldn’t put their fingers on it, but something was different. On Wednesday all they could point to was a slight hesitation in responding to questions. They were very supportive and wanted to know how she responded to our visit. I told them it had been her therapy and mine as well. I also suggested we get together as often as we are able. We decided to get back together after they return from Africa and we return from our cruise in October.

Yesterday at the dentist, I told my dentist. His mother has Alzheimer’s but is further along than Kate. He asked if he could tell his dad (my former dentist) and indicated that he would be glad to talk with me if I were interested. So that brings the number of people who definitely know through me to our pastor, Virginia and Ken, one of the secretaries at church, our children, a couple we met at Chautauqua, my staff, the Greeleys, and my dentist. I also suspect that some or all of Kate’s PEO sisters know.

So how am I feeling about letting the cat out of the bag with more people? I have experienced a little guilt because I feel I have betrayed Kate. On the other hand, it has been a relief to me to share this secret that I have been holding back for so long. My guilt is relieved by the recognition that in the long run Kate will find herself in a situation in which everyone around her knows about her Alzheimer’s, but she doesn’t know they know. What I have feared is that she will learn that I have told someone and that she will be hurt by it.

More Significant Happenings

Yesterday Kate and I went to Nashville for a visit with Scott and Jan Greeley. We had a really good day. Kate and I love being with them. For Kate, the relationship with Scott is probably the longest-standing one she has. Their mothers were pregnant at the same time and remained friends thereafter.

I considered calling Scott and Jan to let them know about Kate’s Alzheimer’s but didn’t. In fact, I had considered doing so immediately following their last visit with us this past April but never did. Late yesterday afternoon Scott rode in the car with me to a Japanese restaurant while Kate rode with Jan. It was only a few minutes to the restaurant, and Scott asked how we were getting along health wise. I told him I had to hit him so abruptly, but that “Kate has Alzheimer’s.” He asked a couple of the usual questions like “How long?” “Have you considered any support groups?” I told him what I could in a short time. When we left the restaurant I told him I would like to call him to follow up on our conversation. He said to call when Jan would be available. This morning I sent an email asking when would be a good time. We set up tomorrow morning after I get to the office following my trip to the Y.

Today I had a routine dental appointment. His father was my dentist until his retirement 5-7 years ago. I always ask about him and his wife. After getting an update I told the dentist that Kate has Alzheimer’s and that we are several years behind his parents on this journey. He encouraged me to call his father and was going to tell his dad about Kate. That means I have added quite a number of people to the list of those who know about Kate. What I see is a natural process in which more people become aware of our situation. It isn’t something that I planned some time ago. It is just unfolding as I have felt the need or a situation presented itself.

Kate went to her monthly PEO meeting this morning. I am wondering if I should say something to them. As I have noted earlier, I suspect they know already. At least two members of the club have said something to me that suggests they know. If they know, I have to believe the rest of the club knows. At any rate, all of this signals a time period in which we are moving into a more serious stage of the disease. I still remain optimistic that we have many good experiences ahead. Yet I am l also facing the reality that the good times are growing shorter. That adds a measure of anxiety for me.

Being More Open

For a long time I have kept Kate’s diagnosis a secret from all but our pastor. Before we went to New Zealand, I told the children. In May I told two of my email buddies and and Kate’s best friend, Ellen. As mentioned in earlier posts, I had been debating on telling the staff. Last week I told someone we met at Chautauqua two years ago. We enjoyed our conversations and have talked about getting together again. In fact, we have now arranged to meet in NYC when we go there to catch our ship for New England and Canada the first of October.

Finally, I decided to tell the staff on last Wednesday. They were just finishing their morning conversation upon arriving for work. I went in and asked if we could chat a moment. They quickly sensed it wasn’t an ordinary conversation. As I started to tell them about Kate, I choked up. It took me some time to gain control of myself but surprised myself by being so emotional about this. I never expected to react this way. After all, we have dealt with this for 3 ½ years. There is a common pattern here. When our pastor asked me if Kate were all right, I immediately choked up and had to gather my composure before answering him. When Ken asked me the same question, I choked up. I guess it should be no surprise that I did the same with the staff. The reality is that Kate’s illness has not only introduced stress for her, but it has done the same for me. In particular, I think that not talking about it is a little like people say. Things get bottled up inside and finally express themselves at some point. All-in-all I am glad that I have now told a few people about Kate. It should come more easily in the future although I want to be careful that she is not aware that everyone knows. Right now I am wondering about telling Scott and Jan Greeley. We are planning a visit to their home this coming Wednesday.

Kate continues to adjust rather well from a psychological standpoint. She doesn’t typically convey any sense of frustration or depression. It is only in moments when she has trouble with clothes and getting ready to go out that we have a crisis. In that regard, our shopping trip for casual clothes this past week worked wonders. She was excited about what she got – about 5 pair of pants, at least that many tops, and a pair of shoes. I feel good that she has a variety of things to wear that fit and that she likes. That should make dressing much smoother in the months ahead.

She continues to express positively in many situations. For example, I have gotten used to her saying many things are “perfect.” She was enthusiastic about her lunch at today. The other night at Chalupas she couldn’t say enough good things about her cheese quesadilla and her cheese burrito. I spoke with Kevin the other night after she was in bed, but I turned on the speaker. After we hung up, she said, “Kevin is so smart.” She expressed great satisfaction in the way he was handling his work. She is so proud. I love this adjustment to things. It is not universal, but it is very common.

A week ago, today Kate had the bad experience with one of our former associate pastors. This morning she expressed an interest in going back to his church. We went, and she had a better experience. She exercised a little initiative when she told she wasn’t going to leave without a hug. He delivered. I don’t think she actually forgot about last week’s experience, but I do think it faded into the background so that it didn’t bother her in a way that it might have done if she did not have Alzheimer’s.

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.

So how are we feeling today?

Today is the 52nd anniversary of our first date and the 51st anniversary of our engagement. We normally do more reflecting on those occasions than we are today. Perhaps I should say that we have acknowledged the occasions; however, our mood is somber rather than joyous. Kate continues to be down as a result of her accident. She said she was feeling better this morning. Then we received a call from the State Farm adjuster who asked questions about the accident. I still hadn’t been able to learn who has(d) our car.

While at lunch I got a call from the officer who was at the scene of the accident. She gave me the correct name, address, and phone number of the garage that was holding the car. I have now arranged for it to be towed to the same body shop that has previously done work for us. All this activity has brought back Kate’s feelings of inadequacy.

On top of the accident, Kate has left her purse with her cell phone at 2 different restaurants over the weekend. The first was on Saturday. We had lunch near my office. We realized sometime later than she did not have her cell phone but couldn’t figure out where it might be. At almost 3:00 am Sunday morning, I got a text message saying it had been found at deli where we had had lunch. After church on Sunday we went by to pick it up.

That afternoon we attended a Christmas concert given by the Nashville Symphony. We went with a group of Kate’s PEO sisters and some spouses. After the concert we went to dinner.

On Monday we realized that Kate’s phone was missing. I called it a number of times while I looked in the car, in her closet, in our bedroom as well as other bedrooms in the house. We simply didn’t know where it was until I received a call yesterday (Wednesday) afternoon. It was the manager of the restaurant where we had dinner saying she had the purse and phone. I told her we would come out today to get it. That took us to there for lunch, and we recovered the missing items. I have needed to watch for Kate’s purse for a long time, but it just isn’t in my sphere of concern. I need to change and am committed to doing so.

Now the real issue – how am I doing? I would say that I am anxious. Seeing the decline in Kate saddens me. It makes me wonder how long we have before it is clear to everyone that she has Alzheimer’s. Already it has seriously affected our conversations. She is unable to express much interest, only toleration, for things I have to say. Often, it is obvious that she doesn’t want to go on with a conversation. We connect best when we reminisce about the experiences we have over our years together. We both enjoyed reflecting on the people we have known, the places we have been, etc. It is difficult to engage in much other conversation. I am beginning to accept longer periods of silence which is something that a person with my personality has trouble with.

Turning Point

On Sunday Kate went to the church library while I went to my SS class. After class I went to pick her up for the worship service. When we began to walk to the sanctuary, I could tell Kate was down and not so interested in going to church. I asked if she would like to skip today and go directly to lunch. She said, “Yes” and breathed a sigh of relief.

On the way to lunch, I told her I would not get her into a discussion but I wanted her to know that I saw her frustration and recognized that she doesn’t like to talk about her problem(s) but that I also felt I had to say I want to help her. She acknowledged that I was right and said, “I am feeling more frustration.” We didn’t discuss anything more, but I did ask her if she felt we were at the time to tell the children. She gave a strong no.

Yesterday afternoon I dropped by the church to pick up a DVD from one of our church staff. I saw several people and one of our associate pastors, invited me into her office. She offered to help me in any way if I wanted anything. This was the second time she has offered which confirmed that our senior pastor had told her about Kate. I suspect this means that all of the pastors are aware of the situation. We had a good, though brief, conversation about the situation. I told her I was struggling with whether or not to tell the children and that I thought we were getting to that point even if Kate does not.

After I got home, Kate received a phone call from her hairdresser who said she had left a message that she could take Kate for a 3:30 appointment. Kate had not checked messages; so she didn’t know. It was 3:40; so I offered to take her to the appointment. After picking her up, she volunteered that she thought she had reached a new level. I told her I agreed. She noted that it was not a dramatic, but a gradual change that has occurred. I agreed with that.

I have been increasingly worried about her driving. After picking her up, I had to leave for a meeting at a law firm at 5:30. She told me she planned to go to a Mexican restaurant near our house for dinner and leave at the same time I did. I told her I would feel better if she went to Panera. It’s even closer. She suggested she would be all right.

When I got out of my meeting, I looked at my phone and saw that I had a couple of voicemails, one of which was from Kate. I quickly listened to it. She told me she was back home and all right. Then she conveyed information that let me know she had been in an accident. It turns out that she was presuming that I had listened to an earlier message from a number I did not recognize. That was a call from the police officer who was at the scene, gave her a ticket for running a red light, and took her home.