Another Good Father’s Day

Yesterday was a good day for everyone. Taylor slept until after 10:00 am, and Kate worked in the yard most of the morning. I read the paper, caught up on email, and wrote an entry in this journal. Taylor and I played in the pool for about an hour. We had lunch at Panera’s and got ice cream at Marble Slab afterwards. We came back home where Kate and Taylor worked puzzles for a while before we went back in the pool until time for dinner. We came home and watched the Spurs beat the Heat to win the NBA championship for the second time in a row. Last year we watched the final game in Jackson Hole where we celebrated our 50th anniversary.

Kate did not say anything about its being Father’s Day, but she did realize when Jesse called, and later we talked with Kevin. As we drove back from dinner, she said, “I hope you’ve had a nice birthday.” I told her that I get to celebrate twice this week, today for Father’s Day and Tuesday for my birthday. I am not sure she understood. When we got into bed last night, she said, “Happy Birthday.” The only sadness I feel about her is that it is another sign of her continuing deterioration.

A couple of other things are illustrative of her condition. She asked me several times yesterday what time we would leave for Charlotte today (to take Taylor to the airport). I wouldn’t be surprised if she doesn’t ask again this morning.

As we were about to leave Panera’s yesterday, she asked if we could drive home the other way to show Taylor. I told her we could. After we had gone a short way, Taylor said, “How far is it?” She said it was not far, just a little bit farther than the usual way. (I watched the odometer and noticed that it is 2 miles farther.) When we passed Panera’s, Taylor asked, “Did we just go in a circle?” Kate answered, “Well, . . . you might say that.” Then she asked me if that is correct. I told her it was. What was interesting was that Taylor at age 11 very quickly observed that we just went in a circle, but she had not and had to check with me to confirm it.

I continue to be pleased that she enjoys the grandchildren so much and will definitely be thinking about some kind of plans for us to get together over the next year and next summer.

Our yard is looking better all the time. This is another thing from which she can derive satisfaction. I love it because it gives her something productive to do, and I love the beauty she has created. She doesn’t always do things the way I would (if I did them at all), but overall she makes the yard look more beautiful. That makes both of us happy.

Fun with the Texas Grandson

Now that the twins have gone we are down to one grandson, but the fun continues. Kate has always, and continues, to enjoy being around the grandchildren. This year is no different. We had a good day with Taylor yesterday. We swam in the morning, went to Chick-fil-A for lunch, saw a movie, had ice cream at Marble Slab, came back home for another swim, went to dinner, and topped off the day with a game of Battle which he won.

The enjoyment that Kate has gotten from the grandchildren is making me think more seriously of planning something for next summer even if we don’t have them one at a time. The reason I am not considering having them one at a time is that I am not sure that I can handle both Kate and the grandchildren. On the other hand, if she is still as easy to care for as she is now, we could do it another summer.

We loved the movie yesterday. At least I did. Taylor said he thought it was interesting. Kate wasn’t taken with it at all. It was Million Dollar Arm. It is about a sports agent who brings a couple of guys from India to the US to learn how to pitch. It is based on a true story, but Kate did not realize it until the end when they showed the real people. I had read her the description of the movie before going, but not surprisingly she didn’t get the part about the “true” part. I never thought to emphasize that to her. In fact, I didn’t think of that as a critical part. It was just a good story. This is the kind of thing that happens every day. I try to prepare her for things, but I just can’t anticipate what is going on in her mind. Nevertheless, I always try to think what I could have done to avoid confusion. It is similar to her panic when she couldn’t find me at Great Wolf the other day. I never thought she would be confused about my whereabouts, or I would have clearly told her I was going with the grandchildren and would be back. I thought she heard the conversation and saw me leave. It is a sign that she is not even listening much of the time. It must be such a strain trying to follow everything that is said and going on. She just tunes out.

Wilderness at the Smokies with Jesse

Jesse and the twins arrived from Mt. Pleasant on Wednesday, June 11. The next day we all went to Nashville where we spent the night at Wilderness at the Smokies, an indoor water park. It was a great time for all. The boys, as usual, got along quite well, and they loved all the things to do involving water. Kate was especially getting to watch her three grandsons having such a wonderful time.

I did not get to talk extensively with Jesse regarding her impressions of Kate. This would be the first time she has been with Kate since I informed her of Kate’s Alzheimer’s earlier this year. A couple of things happened that illustrate how she is doing at this time. First of all, the first night Jesse was with us in Knoxville she had been playing Battle with the boys when she asked me to take her hand while she went to the bathroom. She never came back. When I checked on her, she had gone to bed. She told me she was all right, just tired. I feel sure that in the past she would have excused herself and said good night.

At Wilderness the first day, we were all together when the 3 boys and I went to ride a raft that runs through a long tube. In retrospect I believe she didn’t realize what we were doing. When I got back, Jesse told me she was walking around. I went to where Jesse said she was. When I reached her, she was in a mild panic. She didn’t know where I was and had been looking all over for me. This is another example of her being so normal in many respects that I treat her as normal. I should have made it clear where I was going and that I would come back to her when we finished.

The next day (yesterday) Jesse, Kate and I had left the table at which we had been sitting to watch the twins on one of the water attractions. After a while, Kate started to ask me if I would get her cup of water from our table. Then she said she would do it. I let her do so although I was concerned that she might not remember where it was. After a few minutes I started walking to the table when I saw that she was walking back in our direction without the cup. I offered to get the cup for her.

Despite incidents like these, I am still encouraged that she and I are able to enjoy these times together and that the problems so far are ones that don’t significantly diminish the joy we have always had. At the same time, I am not naïve to the fact that the time is coming when the problems will come to be a bigger issue for us.

Looking ahead I can’t help wondering about next summer when it would be the twins turn to travel to New York with us. I have already decided that if we make the trip at all, I will want Jesse to join us. Seeing Ron and Randy with Taylor this week has raised another possibility. Taylor would be scheduled to make the NYC trip the following summer (2016). Because I am doubtful about Kate’s condition at that time, I think it might be good to take the three of them to NYC, with Jesse, of course, and perhaps with Rachel or Kevin. I intend to broach this subject with Jesse soon. I may also bring it up to Kevin.

What Other People Notice

Although I have often said that most people, even those close to her, don’t recognize Kate’s Alzheimer’s, I do often wonder what kinds of things they do notice. Today Kevin called on his way to see an out-of-town client. We talked about an hour. He asked my impressions of two things that he and his children had noticed during our recent trip to Lubbock. The first involved his dinner with Kate the night we arrived. He had already told me how much he had enjoyed the dinner and how talkative she had been. Today he also said she seemed to talk so comfortably and said things that she had never said before. More specifically, he commented on how much she liked the meal and especially the waiter. He said she also talked about our family and Kate’s and my caring for our parents. I told him that it was. I indicated that especially now she seems to be in a period of time where she doesn’t dwell on her condition, is not in depression over it, and is more childlike that gets expressed in how much and what she says.

The second thing involves his children. He said they had noticed how frightened she was when we were out driving in the car. He wondered if that were something I had noticed. I told him absolutely. I was quite surprised the children had noticed and did not recall anything specific that happened in the car to cause the children’s perception but that it was correct.

He also said that Heather had recently talked with him about our care for parents and asked if he were going to be traveling to Knoxville more to take care of us. I thought this was an interesting thing for her to think about. It seemed to Kevin that she was encouraging him to do so.

The phone call was a good one. I told him how things were going and what changes I saw occurring. Specifically, I mentioned that she is more childlike, loves many things (the meal was perfect, the waiter was perfect, . . .) and that she seems to show less concern about her condition which I take as a significant shift in the progression of her illness. I didn’t at any time feel any intrusion on his part. It was just a good honest discussion of how things are going and what is happening.

Re-Grouping

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.

Great Family Time

Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.

I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.

This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.

By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.

Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.

One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.

I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.

Life after Summer with Grandchildren

This summer was our best with grandchildren. Although we always enjoy having them visit us, for some reason this year seemed to be great in every way. Of course, the trip to NYC with Brian was a highlight, but we also enjoyed the twins as well as Taylor. They overlapped for 3 nights which made all 3 of them happy.

Taylor left a week ago yesterday. The following day I attended a symposium sponsored by the Alzheimer’s Association. Kate had received a brochure about it the weekend before and thought I might be interested in going. The focus was on understanding what life is like from the Alzhheimer’s patient’s point of view. I took her suggestion to mean that she might like me to attend; so I signed up.

Much of the information covered was repetitive, but it was good to hear what is currently going on in the field, medications, etc. The bottom line is that there are still no medications that clearly retard or cure the disease. One of the most interesting aspects of the program was a “virtual tour of Alzheimer’s. It was designed to give us the feeling that a person with AD feels. We put on goggles that blurred our vision, wore shoe inserts that had little prickly points, put us in a darkened room, and gave us quick instructions on tasks we were to do. It was hard to find items, we couldn’t remember the instructions, and general felt foolish and dumb.

That night as we went to dinner Kate asked me about the conference. I told her about the virtual tour, and she acknowledged that it was similar to the way she feels. We continue to see things that indicate the nature of the disease. One is that she doesn’t remember new things very well at all. That means if we decide to do something at one point during the day, she won’t remember it later. For example, we discussed getting a present for Jan Greeley whose birthday is today. They are due to arrive for lunch in the next hour or so. This morning when I mentioned the present for Jan, she had completely forgotten.

So what’s going on?

It has been a busy couple of weeks. Kate and I took Brian to New York July 17-21. We had a week to ourselves, and then we hosted the twins from Memphis. Yesterday afternoon we met Taylor at the airport in Nashville for a week’s stay. The twins are still with us and are actively having a good time. As soon as we got home last night, they played basketball, then took a swim, then watched the Olympics until just after 11:00.

During this same period of time, Dad has been getting along reasonably well. His latest challenge is a skin cancer on his right arm. We went to the dermatologist this week and found out it requires some careful attention. We had several options to choose from and have decided to take off the top crusty layer of the tumor and then go through radiation 3 days a week for several weeks. He is not in any great pain and is not experiencing any special emotional reactions to the procedure. He does continue to talk about his birthday party coming up on Oct. 20. I am feeling the pressure to get things organized, but that will have to await the departure of grandchildren.

In the meantime, Kate has enjoyed herself, but we continue to see signs of her Alzheimer’s. The other day she asked me for the umpteenth time how to view her pictures on her camera. I know she has hated to ask, but she increasingly doesn’t try to fool me about her memory. I am sure she does sometimes and suspect she is becoming more aware of how much help she requires. I really felt sad for her when she asked the most recent time she asked.

Recently she has said, “You’re so good to me.” I have several reactions to her comment. The first is again a sense of sadness for her. Another is one of guilt that I continue to lose patience with her at times.

Last night she asked me how to do something on her camera, and I showed her. Then she said, “You told me that before.” It was something that I didn’t recall her asking about and felt there was no reason for her to know; so I told her. She was so relieved, it was striking to me. I know she hates to encounter one instance after another in which she has asked about something but can’t remember it. I am continually running into numerous instances in which I have told her something, and a short time later she is unable to recall having been told.

This memory problem is an issue for the caregiver in that we frequently talk about events, issues, etc. in everyday conversation. It also limits the amount of conversation.

Our Granddaughter’s Visit

This past week our granddaughter from Tom has been with us from. It has been a great week with her. She has been an especially good companion for Kate. Throughout the week Kate has been impressed (as she has in the past) with Heather’s keen observance of things around her. She notices many things that we miss. I can’t help thinking, however, that this has been especially noticeable for Kate as her own memory declines. Two quick examples. Kate and I were looking for a picture I had taken of a Crowned Crane in Africa. It wasn’t long before Heather showed her the framed picture hanging on her wall in her office. Similarly, Kate had received a photo taken of Ken and her when they were young children. Kate commented that she already a copy of that picture but couldn’t recall what she had done with it. Not too much later, Heather showed her the picture that was displayed in our family room.

On a similar note, I was struck by a couple of things that Kate could not remember as she and Heather were preparing a special Father’s Day and birthday dinner for Dad and me. First, Kate asked me where we keep our placemats. Although we don’t eat at home much, we do get the placemats out often enough that I was surprised that she didn’t remember where they are kept. She also asked me where the spatulas are kept. A little less surprising is that she also asked where the blender was kept. This is less surprising in that I am the one most likely to use it. I use it regularly to blend soups for Dad.

We both thanked Heather for being with us and how helpful she had been. Heather commented on Kate’s forgetting things. I believe, however, that she doesn’t suspect the actual situation. She simply thinks of Kate as having a bad memory. This may be the story we see played out with the rest of the family.

Odds and Ends

Brian left last night after being here for a week. During the week that he was here, Kate exhibited periodic “fright/annoyance” at various loud noises he made. She repeatedly had to tell him to stop making certain noises. He always stopped, but would forget and make them again later.

Kate  also had her most recent appointment with Dr. Reasoner on Wednesday afternoon. This time I did not go with her since I was taking care of Brian. I felt Kate would be all right by herself. I had suggested a few weeks ago that we postpone the appointment, but she wanted to go ahead. She found talking with Dr. Reasoner to be soothing. She likes her style of being forthright but in a sensitive manner. She doesn’t sugarcoat things.

On the way to the doctor’s office, Kate got lost and called the office for directions. They were quite understanding and got her there.

As we waited for Brian’s plane to leave last night, Kate asked for my help in arranging a time for her “Library Ladies” group to have lunch. It is her time to set the date and place. She just hadn’t done so and needed my help in figuring out when people could come. Several had sent her emails with possible dates, but she couldn’t manage to go through them and see what dates were best. Only 4 people had responded; so it wasn’t a big deal, but it was too difficult for her. I gave her the best dates, and she entered it in her iPhone. When we met for lunch she said she had been unable to locate the information and couldn’t remember it and asked for my help again. We went through it one more time, and this time I think it will work.

Her willingness to ask for my help is good but also makes me sad. She recognizes that she can’t keep things straight, so she needs help. This morning she sent me an email with 2 appointments for next week. She likes for me to put them on my calendar so that I can make sure she doesn’t forget.

On the positive side, I am amazed at how well she is accepting her condition. I know she has ups and downs, but, on the whole, she is doing remarkably well. Given her chronic depression, I would have thought this would be a much lower blow than it has been.