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.


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.


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.

Not everything is good

Yesterday afternoon we went to see the movie, The Book Thief. It is a good movie, but gut wrenching. Deals with the holocaust. As we were about to leave the theater, I said to Kate, “I hate to say this, but I fell asleep before the movie started and missed the beginning.” She sensed I was about to ask her how it began when she suggested going online. She seemed a little depressed which I associated with the movie. As we walked down the hall she said, “I can’t even remember anything about Captain Phillips,”a movie we had seen 2-3 weeks ago. I sensed then that she was depressed over not understanding the movie we had just seen. I have mentioned before that she finds it hard to follow movies and plays and it is frustrating. This time she was more depressed than usual. I said something intended to be supportive, and she gently said, “Don’t say anything. I know you want to help me.” We drove home quietly. I made a fire and thawed some chili from the freezer. We sat quietly in front of the fire until she wanted to go to bed. We talked very little during that time. Before going to bed she said, “I’ve been pitying myself all day.” I said, “You’re entitled.” After I had taken my shower, I got into bed and hugged her until we were both asleep

I am also realizing that her behavior sense Dad’s death is not entirely part of our grief. The weather has changed, the party is over, and she is not spending a good part of the day pruning. That was a major activity before the party. Thus she is left with little that she is able to do, but play Free Cell on her computer.

This has led me to go back to my thinking about telling the children about things after Christmas.

How Things are Going 5 Weeks after Dad’s Death

We just got back from Ellen Seacrest’s house where we had lunch with several other friends. Kate is taking a short nap before we head to a movie; so I thought I might make an observation or two on our current state.

All-in-all I think we are making slow but steady progress in our recovery. Surprisingly, I think Kate is having a harder time adjusting than I. I think that is due mostly to the fact that I have had a number of responsibilities with the  foundation, music club, and Sunday school that have kept me busier. Kate commented yesterday that she is finding herself not having anything to do. We have both talked about pursuing some kind of volunteer work. I have even gotten the name of a contact at one of our hospitals. I will contact her after the first of the year. I mentioned several different things I thought we might do, and working with children was the one Kate liked most.

I notice that Kate is spending much of her time playing Free Cell on her computer. I think that is because so many other things frustrate her. Also the weather has been colder. That makes it more difficult to be outside pruning the plants.

We went to New York last week and had a great time, but we can’t always be doing special things. Beginning now I need to make more effort to see that she is occupied in worthwhile/pleasurable activities. Otherwise, she will just vegetate. She can’t seem to focus on anything for any length of time. She started decorating the house for Christmas. I thought that was a good idea, but she stopped with garlands of greenery thrown on the floor or across the furniture.

Her short term memory is clearly getting worse. I think this is what is going to give her condition away to friends. She is very likely to ask the same question in relatively short time frame. This is beginning to happen a lot.

As we were coming home from the Ellen’s, she said she had talked with a man who told her that his wife “has the same thing that I have. What is that?” I told her it was Alzheimer’s. She, of course, remembered immediately. This is a frequent occurrence. Yesterday she asked me to tell her our passcode to listen to our voicemail. This is something she has been using for several years without a problem. Later in the day she had to ask me again.

I am struggling about telling the children. I want to honor her desire that they not know, but I feel I have benefitted by knowing. It means I make the most of the time we have together. The children don’t stay in as much contact with her. This is not anything that she even realizes, but I believe she would love it if she heard from them more frequently.

Yesterday I had just about made up my mind to tell them before her birthday in January. Today I am more doubtful. I don’t want the grandchildren to know. They might say something to Kate. Then Kate would know that I had betrayed her confidence. As I write this I am feeling like telling them anyway. I have a little time to think and will weigh the pros and cons.


Much has happened since Dad’s death and memorial service. Kate and I have both experienced a “letdown” that I consider one of the stages of grief. We haven’t felt sad. In fact, we are pleased with the way Dad left us. He had the birthday that he lived for all year, and when he died, he did so without pain. Despite the good things that we can say about his passing, we have both felt lethargic and just not up to doing things. This has led to our trying to entertain ourselves more than usual. We have been to several movies, several live performances at local theaters, and eaten out at places that are a little more special than we usually do. In addition, I booked a trip to New York. We leave this Tuesday morning and return Friday evening. I would never have considered doing this if Dad were still alive. Now that he is gone, there is no reason that we can’t, and I feel we need it.

I should say that I believe we are both at the end of our grieving. We went to Jesse’s for Thanksgiving. On the way back, Kate said she felt she was over her slump. The visit with Jesse’s family had given her a real boost. In many respects I feel the same way except that I find myself waking up at night and not going back to sleep the way I usually do. In most cases, I find my mind wandering to thoughts about Dad.

I have been especially anxious to comment on Kate and how she is doing with respect to her Alzheimer’s. I am clearly sensing that she is deteriorating further. It makes me wonder if we are nearing a time when I should let the children know. I will wait on a decision until after our visit with Kevin’s family for Christmas.

When the family was here for the Dad’s party and then two weeks later for his memorial service, she did little to help get things done. To some extent, I may have saved her by telling Larry that I didn’t want her to have to do much and welcomed his offers to help. He and other family members came through with food and preparation that helped us tremendously. Of course, Dad’s sister-in-law, as always, was a big help as well. She came a little early before the party and the memorial service just to help.

I am seeing so many signs of Kate’s condition that I can’t begin to summarize them here. Things are happening all day, each day. In general, it manifests itself in two ways. First, is a dysfunctional way of addressing all of the numerous tasks that most of us take for granted. One silly one is that she never sufficiently cleans out the yogurt container after eating her yogurt. I come behind her and rinse it further. Similarly, the spoon she uses is rinsed, but she never completely rinses it. She does things like leaving clothes on the floor or hanging them up very sloppily if she hangs them at all.

The second indicator is one that people would suspect. Her memory is deteriorating. She simply can’t remember routine things that I tell her. She repeatedly asks me what day we are going to New York or whatever else we are planning to do. I have to stay on top of all obligations, not just for me, but so that she can be prepared. Ironically, she recognizes that she has trouble getting ready to go places and has started working harder to be on time when we are going out. She even feels that she is doing well at this and feels that I don’t trust her enough.

Another symptom that is not brand new, but increasing, is a kindness toward people. She thinks many people are smart. She also comments on how good the preachers’ sermons are. This is true across the board for our senior pastor and the associates. On the way to lunch today, she said something about how good the sermon was and then said, “Of course, I can’t remember what he said.”

We don’t talk a lot about her condition. I try not to do anything to draw attention to it. I let her do the talking. She doesn’t say much, but she does tell me about things she has done or forgotten. I just give her a hug and tell her I love her. She depends more heavily on me than in the past, but she also shows a desire for more independence. She takes pleasure in letting me know when she remembers something she expected me to think she would forget.

I was quite concerned about her at Jesse’s for Thanksgiving. She spent a lot of time in the bedroom while I spent time with Jesse and Greg. My own interpretation is that she just can’t carry on a conversation for very long. She is still great at the initial small talk that is part of what we do when we haven’t seen people in a while. After a while, it is too much for her to handle. She has trouble following conversations, movies, plays, etc. The surprise is that when she told me that she thought she was coming out of her slump, I thought she was talking about being in a slump at Jesse’s. When I asked if she meant at Jesse’s, she acted offended and said, “Of course not. I was just fine at Jesse’s. That makes me think she has deteriorated to the point at which she does not recognize how her retiring behavior appears to others. It seems strange. She is simply withdrawing. This is the kind of thing that I would expect most people to notice first before recognizing the memory problem.

Phases and Frustrations

I don’t think I was explicit on the change in my schedule as a result of care for Kate and care for Dad. Let me be clear now. When I learned about her diagnosis, I immediately changed my schedule as it relates to work so that I could spend more time with her. The care for Dad required more changes in my time at work. While I have never told the staff about Kate’s AD, I had let them know that she and I were going to try to spend more time together. I also told them I wanted them to assume greater responsibility for running the company. That has worked well. So well in fact that I do very little in terms of the daily affairs.

This evolution of the business as well as the growing needs of Kate and my dad have led to my coming into the office each morning, but I do only personal things. Some of that has involved plans for the 3 trips that we have coming up – -NYC in December, the Peru and the Galapagos in Feb/March, and the week in Jackson Hole in June. It also includes responsibilities with my SS class and our music club. I am occasionally asked if I am retired. I generally hesitate in answering by saying I spend less and less time at the office, but I believe I am really at the point of saying, “I am retired, but I go to the office in the morning.”

Now to the frustration part of this commentary. I find that even though Dad is in a nursing home, I feel the need to spend a good bit of time looking out for him. That involves taking something to eat each afternoon, making sure he has bananas, peanut butter, crackers, and Oreos as well as getting his clothes cleaned. In addition, there are routine visits to the cardiologist and less routine things like the dermatologist and the surgery he had last week to remove a tumor from his right forearm. He keeps me quite busy when I am with him. He always needs something.

Yesterday I took him to his cardiologist. We waited over an hour to see the doctor. I almost always take him someplace to get something to eat before taking him back. Before I could address this, he mentioned that he would like to get something to eat. I said that I had thought we might go by Wendy’s and get a baked potato. I have brought him baked potatoes on a number of occasions but not in 3-4 weeks. I like to give him a potato because he likes them and is able to eat and swallow them easily. However, he told me that he was getting tired of potatoes and wanted something else. While I went into his surgeon’s office to change an appointment from the coming Monday to this Friday, he thought more about what he wanted. When I got in the car he told me he wanted either a cheese omelet or spaghetti and meatballs. I thought for a moment and told him that we were not too far from a Waffle House and that we could get an omelet there. We went there. When the waitress came to the table, I told her he wanted a cheese omelet and asked him if he wanted anything with it like sausage or hash browns. He said that he didn’t. As soon as the waitress put the omelet at his place, he told me he wanted a waffle to go with it. I called the waitress over and let her know but told her not to put in the order until we saw how interested he was after eating his omelet. As it turned out, he didn’t want the waffle.

As we were leaving to go back to Mountain Valley, he noticed that Office Depot was directly across the street and asked me to stop in there to get him several ball point pens because the folks at Mountain Valley had done something with the ones he had had. I bought the pens and got back in the car. He then said, “I should have asked you to get some postcards as well.” At this point, I told him I would do that another time and that we needed to get back.

As we were driving he told me he thought he would need something else to eat. I told him that we would be arriving at Mountain Valley as they were serving dinner. I took him directly to the dining room, and after giving his nurse instructions from the cardiologist, I left for the day. The total time for all this was 4 hours. Had I stayed longer there would still have been things to do. For example, I noticed that he needed a shave, I hadn’t gotten his teeth brushed, etc. It never ends. Although he periodically says something about all the time I spend with him, he never really seems to be bothered by it.

More Signs of Change

Just a couple of quick notes. Over the past couple of weeks I have noticed additional signs that Kate’s memory may be worsening. She continues to misplace her phone, keys, purse, etc. She also forgot to go to a dentist’s appointment this week. One day this week while we were at lunch, she asked me if she had been awake when I left that morning. I told her yes and that she was up and we had spoken, but she didn’t remember it.

I am also finding that she is more irritable and is almost terrified if you accidentally startle her. When our grandson was here, he accidentally did so. I frequently startle her if I come in the room when she doesn’t realize I am at home. I am trying to make sure she knows I am home before walking in on her.

Signs of Dependence

This is really an addendum to yesterday’s post. Last night I remembered one other thing that I take as a sign of the progression of Kate’s AD. Several times lately she has seemed uneasy when I am at Dad’s, and she encounters problems working on the computer. This is the first sign I have had that she looks to me as her security. At this point it is minimal, but I can’t help remembering how Mom never wanted Dad to leave her presence. I have heard a church friend  say the same thing about his wife. It makes me think more seriously about how I will handle work at the office as the AD gets worse.

Reflecting on the Past Month

It was one month ago today that we met with Dr. Reasoner and received Kate’s diagnosis. The world for us changed in that moment. Everything we do now is interpreted in light of that. Many times I have been in a Sunday school class or other conversation when someone has asked what you would do if you knew you had ”X” amount of time to live. I recognize that Kate’s situation is not exactly the same. We don’t really know how long it will be until her death, and we don’t know how long she will be able to live a mostly normal life. It is hard to articulate what I mean by “mostly normal life.” I think I mean at least 2 things: (1) that she will be able to continue enjoying life in the same way that she does now – going to movies, the theater, out to eat, driving a car, spending time with friends, etc., and (2) that though some people might think she is a little spacey, they wont know that she has AD. I use the terms spacey because she has often said that the people at her beauty shop think of her that way. Over the past few years, she has occasionally forgotten to come to her appointments or left things at the shop. I suspect that Ellen, her best friend, has observed more than a little bit of this. At the moment, I doubt that she suspects AD.

As I think my earlier posts suggest, not all, nor even most, of our moments have been overshadowed by sadness. I do believe that Kate’s response has been in keeping with what you would expect from her depression she has experienced over a long period of time. She finds it hard to do the things she doesn’t want to do. She has busied herself in little things around the house like cleaning out drawers and closets. On the other hand, she has taken the positive step of attending yoga pretty regularly. Each day she tells me if she has a class the next day and what time it meets. I make sure that I set the alarm clock so that she doesn’t oversleep if it is a morning class. She also is working to avoid things that frustrate her. We talk about these things, and she is relying on me more as a partner in this effort than in the past. This blends with her adjustment to depression. Because she knows I tend to be more optimistic and upbeat (overly so she would be quick to say), she tries not to drag me down with her depression. She has suffered mostly in silence for many, many years. Now we seem to be operating as partners in adapting to her condition.

My own reaction has been anxiety. I fear, not her death, but her gradual incapacitation that will terminate our plans for many shared experiences in the future – celebrating our grandchildren’s maturity, graduation from high school, going to college, taking jobs, raising families of their own but also our own private time together – drinking wine by the fireside, lounging by the pool in the summer, travel to many places, theater trips to New York and so many other things.

My anxiety over losing these experiences has led me to try to be with her as much as I can. We eat lunch together a lot now. I am more sensitive about how long I stay with my dad each day. She always felt I spent more time with Dad when she would like me to spend more time with her. I am only now interpreting some of her recent concern about this as a symptom of AD. For example, on one occasion recently she sent me a text while I was visiting Dad. She wanted to know where I was and when I was coming home. When I got home, I learned that she thought that I had been gone all afternoon. In reality I had been gone about two hours, my normal time to drive there, spend time with him, and drive back home.

Another change in my behavior is loss of any frustration over her forgetfulness and other symptoms of the disease. Until yesterday, I had not experienced the first sign of irritation or frustration since before the diagnosis. Even yesterday was minor. On Wednesday, Dad’s brother and his wife as well as my brother are coming for a 4-day visit. The primary objective is to work on Dad’s condo – sorting through his things to determine what needs to be disposed of and what should be kept. This is a first step in putting the condo on the market. At any rate, Kate and I were discussing plans for the visit and trying to work out meals. I could tell she was getting frustrated. That led to my feeling a sense of frustration. The key difference from the past is that I might have pushed a little, and we both would have felt bad. This time I backed off and suggested we’ll get it worked out.

Last night she was trying to determine if she could host a women’s club meeting at the house in July or August. When I told her the August date would be right after we returned from Chautauqua, she asked if I were still planning for us to go for the week on Iran. I felt irritated because we had decided together while we were at Chautauqua last summer that that was the week we would go and put a deposit down on the inn where we have wanted to stay in the past. Now it is really late to make changes. Again, instead of pushing it, I told her that I would see if we could make a change if she really wants to do so, but we had put down a deposit long ago. She, too, decided to back away, and we left it that we would keep the week we had planned on.

The other thing I would say is that our relationship has been the best I can ever recall. Of course, I know I am forgetting the courtship, our new beginning in Madison and in Raleigh where our children were born.  I find myself simply going over to her and giving her a big hug. We have eaten out a lot over the years but are doing so more now. Last week we didn’t eat a single meal at home. When I went to take the garbage out to the street for pickup today, I noticed there was no garbage in the container.

We had a wonderful night out at one of our favorite places on Saturday night. We had a cocktail in the lounge and talked for about 30 minutes and then went to the dining room for our meal. We talked about many things. Some of the things involve AD and her reaction. For example, we had a brief discussion about planning our funerals. We agreed this was something we would do together.

But it isn’t only the special nights out like Saturday. I feel even having soup and a sandwich at an ordinary place is a special moment together. We both frequently comment to the other about how nice the meal has been when we really don’t mean the meal at all. We mean that moment in time when we really connected. During the past month we have had many of those moments, and I trust they will continue.

This Wednesday, Kate goes back to Dr. Taylor, the psychologist, as a follow-up to her test of last week. On March 2, we go back to Dr. Reasoner. We anticipate that she will give us more information on the PET scan as well as Dr. Taylor’s evaluation.