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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.

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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.

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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.

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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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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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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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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.