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New Year: So where are we? How is she? How am I?

I started to entitle this entry “Emotions change quickly” but thought that since it is the beginning of a new year some reflection is appropriate. Both things are intertwined.

Just yesterday I sent the following email to Tom and Carl, two email buddies whom I have kept up with since college days at TCU. Neither of them knows about Kate’s AD.

As I suggested in my previous post, each of us is approaching the stage of life with a different set of experiences and situations. I have never been a workaholic, but my job has necessarily required time apart from Kate. I used to travel a lot. I was reminded of this the other day when I noted that I have travelled only 23,000 miles this year. At one time I was travelling over 100,000 miles a year. That’s how I got to 3,000,000 with Delta. I must have flown 500,000 with US Air. Kate never complained. She actually likes alone time, and I think we were together just about as much as she wanted. Now that we have reached this stage, I just feel the need to make the most of whatever time we have left. That is why I have put as much emphasis on our 50th anniversary as I have done. I have also tried to attend as many social and cultural events as possible. We do about as much as we are comfortable doing. Sometimes it is just nice to be at home.

For me this is as much about attitude change as it is about just being together. I mean there is a difference when we are together. For example, as I finished the paragraph above, she came in to ask if I could build a fire. In the past I would have done it, but I might have thought, “Gee, we just had a fire each of the last 2 days. Do we really need another one today?” Instead I immediately started working on a fire that she will enjoy the rest of the afternoon until we go to dinner. Another way of expressing it is that I make more of an effort to make her happy than I did for a good bit of our married life. The great news is that I find that we are enjoying each other more than we did in the past. That’s saying something because we have always had a good marriage. Now it is almost like we are on a honeymoon. We don’t take each other for granted. Enough said.

Of course, this leaves a lot unsaid because I don’t want them to know just yet about Kate’s diagnosis. It also emphasizes how quickly my feelings can change. Yesterday I sensed that Kate was somewhat depressed. When I got home from visiting Dad, she was almost asleep on the sofa in the family room. We talked a little before dinner, ate at home, and went to bed. During the night she had some problems with diarrhea. This has been a chronic issue for her for some time; however it has gotten worse in the past 6-12 months. This made me think about her continuing inability to function effectively when doing a lot of tasks and what things will be like as she gets worse. It also made me think about our upcoming trip to Peru and Ecuador. I understand that almost everyone gets diarrhea on this trip. Will this be especially difficult for her? I don’t know. I hope that we will be able to take medicine that will help us. She has two doctors’ appointments coming up soon. One is with Dr. Reasoner, the other with Dr. Edwards. She also had a bad bout with acid reflux night two nights ago. I ended up calling the doctor on call at Dr. Reasoner’s office. He recommended she take Gravascon or Mylanta which we have bought subsequent to my call. My point in going through this is to say we can be up at one moment and down at another. My mood depends heavily on how I believe she is feeling.

So how is she doing? On the whole, I would say she is doing well. I think she would say the same. On the other hand, we both see signs of greater difficulty doing lots of things. I get the impression that she is sometimes just in a daze. On simple tasks like entering a new name in her contact list or an item on her calendar, she asks me to give her just one thing at a time. I can’t say, “”We are going to the Bijou on Thursday at 8:00.” That is too much information at one time. Another indication of how difficult it can be for her to do things involves her hair appointment. She missed one while we were in Tom for Christmas, and her hair dresser asked her to schedule a new appointment when we returned. I have been asking all week if she had done it, and she hadn’t. Last night I asked her if she would like me to call and make the appointment. She quickly said yes as though a load was lifted from her.

At dinner on New Year’s eve, she made a gentle reference to her AD, but we did not discuss it. It is clear, however, that she sees herself having more trouble. She does not believe her time is as short as I believe it is. She continues to talk about taking each of the grandchildren to NYC when they are 13. That would be the summer of 2014 for Heather and 2016 for the twins, and 2017 for Taylor. I am not even sure 2014 will work out. Kate certainly would be able to travel, but based on our recent trip to NYC, she requires a lot of help. (I have even thought we might consider taking Heather to NY this summer instead.) That said, I believe it is good that Kate does not believe the trips won’t work out. This would depress her.

Going to have to close now. I will deal with how I am doing in the next post.

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Sweet and Bitter in NYC

This is Sunday morning, and we have been in New York City since 9:15 Wednesday morning. I just got back from a nice walk around the neighborhood on the upper Eastside near Bloomingdale’s. Kate is still sleeping soundly. I am going to take a few minutes to collect my thoughts on the past few days.

The first thing to say (and the reason I put “sweet” before “bitter” in the heading for today’s post) is that we have had a marvelous time. It is everything I had hoped. This is the first of a series of things we will do to celebrate our upcoming 50th anniversary (May 31, 2013). I chose New York City because it is the place we have visited far more often than any other place, we love it, and Christmas in NYC is very special. Besides that we had our first date on December 19, 1961, got engaged on December 19, 1962 (50 years ago this month). Our first date was a performance of Handel’s Messiah. Tuesday night we will attend a performance of Messiah at St. Thomas Episcopal Church on Fifth Avenue. We both love the theater; so we have also attended My Name is Asher Lev, Newsies, The Book of Mormon, Un Ballo in Maschera at The Metropolitan Opera, and Once. We may attempt another show this afternoon; however, I am tempted to pass some time in our neighborhood. It is a wonderful area, and we have not spent sufficient time here. Of course, we don’‘t leave until late afternoon on Wednesday; so we might do that another time.

Now for the bitter. Although we have had a great time, we are both noticing Kate’s deterioration. At lunch a couple of days ago, she said, “”I would love to come back to New York with Jesse, but I don’t think I could do it again. She would have to take charge.” I said something about the wonderful memories of previous trips. It was a sad moment for both of us. In addition, at each show she asks me to explain things. It is very hard for her to follow the complexities of the stories. Yesterday at the opera, she asked me to explain what had happened after each act. She said she simply couldn’t follow things. I said it must be like there are so many stimuli coming in that she doesn’t know what to focus on. She said that was “exactly it.”

Because of her condition, for the first time I haven’t considered leaving her anyplace to browse and then meet her later. This is something we have frequently done in the past. We have both stuck close together at all times. There have been at least 2 occasions when we have gotten separated momentarily. One of those was going into Macy’s.

In addition, she gets confused on instructions. For example, last night while waiting in line to enter the theater, a theater employee asked us to move down to another line. For some reason Kate thought we were supposed to enter at a different place; so she simply went ahead of people who had been waiting in line. She also has trouble going through the turnstiles at the subway.

All these little things notwithstanding, we are having a wonderful time. It makes me glad that I decided to go all out for our 50th anniversary because things will deteriorate from here. Next year she will be less able to enjoy these things.

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Good Weekend

We had an active weekend. Friday night we went our for a nice dinner at the Parkside Grill. Saturday night I picked up something from Asia Kitchen, and enjoyed it with a glass of wine. Sunday night after coming home from Dad’s, Kate had the house decorated for Christmas with many candles lit in the family room. We had a glass of wine, and conversation with a fire in the fireplace. I had brought home sea bass from Whole Foods along with an heirloom tomato. It was a special evening even though I have a bad cold.

I make a point of these little things because we are finding that those moments are more special than we would have thought in years past. We really are making the most of the time we have left.

On the downside, this morning Kate asked me how to turn on the TV, something she has been doing without a problem up until now. I don’t mean that she hasn’t had problems with the remote. That has always been confusing. I showed her how and turned it on for her. A few minutes later, she came to ask how to change channels. She couldn’t remember. I showed her, and she remembered right away.

Two other things caught my attention over the weekend. On Saturday when I got home from Dad’s she indicated she was not in a good mood because I was coming home a little later than usual. As we discussed this over a glass of wine before dinner, she told me she likes for me to be at home. She said she has so many questions to ask me, and it frustrates her when I am not here, especially as it is growing dark outside.

The other thing involves the birthday cards that Dad received. She brought them to me yesterday afternoon and asked if I might like to take them to Dad. I said I would but thought she was going to put them in a scrapbook. She had completely forgotten that she had decided to do the scrapbook. It is getting so that she forgets many if not most things that she says she will or wants to do at a given time unless I take the responsibility of reminding her.

She spends a good bit of her time on the computer working on photo albums that she may never complete and playing Free Cell. I think she gravitates to these things because they are things she can do. She doesn’t say much, but I know she is sensing her decline and it bothers her.

I felt guilty over the weekend because she wanted to host a lunch for my staff, and I her I hated for her to have to do that. I explained that I will be stressed over it. She is planning to have a lunch for two of her close friends after we return from New York on Dec. 12.

This morning I took her car to the body shop for an estimate of the damage that occurred when she struck a support in the Belk parking lot. We should get it back soon. Kate will be happy about that.

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Some Days Are Better Than Others

We’ve had a good week, but yesterday there was a frustrating moment. Kate wanted to send Taylor a birthday card with a note that indicated we were giving him tickets for the baseball team and the hockey team. She worked for the better part of two hours trying to select an appropriate eCard and to enter the email addresses of Rachel and Kevin. She can’t remember their addresses and has Rachel’s address listed as Kevin’s. In addition to the memory issue she can’t seem to type information correctly; so she had to re-enter the addresses a number of times. Then she would ask me once again what their addresses are. I volunteered to do this for her, but she insisted that she would get it. It was as though she didn’t want to acknowledge that she couldn’t do it.

This led to her being somewhat depressed, and although we went out on the patio to chat and have a glass of wine, she never recovered. The day had ended in frustration.

This morning she sat down next to me on the island and was looking at the screen on my old computer. I was downloading files to put on my new computer. After I withdrew the flash drive, she picked up my computer and headed out of the kitchen. I asked what she was doing. She said she was going in the family room to work on the computer. I told her that computer was mine. Then she wanted to know where her computer was. I told her I did not know but would help her find it. She didn’t want help. In a few moments she had found it in the bathroom. This is a good illustration of how quickly she can forget. In this case she had been using her computer in the family room and got up to go to the bathroom putting her computer down on the bathroom counter. Then she came out and forgot that she had taken it there. It also shows how poorly she is able to discriminate among different things. In this case my old computer versus her new one.

When do we tell the kids?

We haven’t talked in a while about telling Jesse and Kevin about her Alzheimer’s. She was far from ready to tell them or anyone else the last time we spoke which was several months ago. She prefers not to tell them until we have to do so, or when it becomes obvious. I suspect that these events will occur at the same time. That will also be what happens with friends and acquaintances as well. There will be a point when everyone already knows or suspects. Then we can acknowledge the situation. Until then, we just keep everything to ourselves.

Note about Dad

Yesterday Kate and I took Dad to the Kiwanis spring luncheon. He looked sharp in his pin stripe suit and tie. He also seemed to enjoy himself although I can tell he experiences frustration in group situations like this where he unable to hear or follow everything (or anything) that is said. Nonetheless, I think it was good for him to get out. He still finds himself energized by the presence of other people.

Before we left Mountain Valley after returning Dad, we spoke with Dad’s speech therapist. I asked her about the upcoming Prom Night . She said that she is going to be there with Dad for the occasion. I was pleased because that occurs at a time we will be in Arkansasfor Dorothy’s wedding. She loves him so much that I won’t think of this as an imposition, and, of course, it will be good for Dad.

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Frustration

I have commented a number of times about the fact that the person who has AD recognizes that she has it and finds it frustrating. For example, last night when I arrived home after visiting my Dad at Mountain Valley, Kate said, “Finally, you’re home. One day I’ll be dead, and you’ll still be visiting with your dad.” After that she apologized, and said, I’m just so frustrated.” I asked, “You mean by the general situation (trying to be subtle instead of “your AD.). She said, “Yes,” and then, “Let’s not talk about it.” We then went to the kitchen where we put some things together for dinner. I had cooked chicken thighs over the weekend. I made a chicken soup, and she sliced tomatoes and cooked green beans. Then we had a delightful evening eating outside with a glad of wine.

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Moments of Discouragement

Yesterday was a good day for me. I had taken my dad to the memorial service of his Kiwanis friend at First Presbyterian where we both saw some of Dad’s Kiwanis friends and others we knew including someone from Dad’s writing class. Afterwards we went to Ruby Tuesday where Dad had a bowl of clam chowder and Buffalo shrimp. We both had a cup of coffee. I thought it was a special time and enjoyed every minute. I called Kate to say I was leaving the restaurant to take Dad to back to his place and asked if she would like to go with us and then we could have dinner after that. She sounded down but indicated she would like to go with us.

We dropped Dad off and went to dinner. The meal was good, and it was a special time for us. The day ended on a high note.

A week before Thanksgiving Kate had a painful day. I could tell she was discouraged when I got home. That evening we looked over a photo album that her father had put together. We both enjoyed going through it and reminiscing. When we got in bed that night, she said, “This is the best I have felt all day.”

Friday night before Thanksgiving we went to Theater Knoxville. Just before the play started, she asked me for cough drops. At intermission she couldn’t find them. She finally found them in her purse. She said, “Welcome to my day.”This is a very typical experience nowadays. It is always something that is misplaced – keys, purse, wallet, power cord for computer, etc.

On Sunday night before Thanksgiving we stayed in a Residence Inn in Houston.  We were there to celebrate the holiday with our son, Kevin, and his family. She said she had forgotten her tooth brush; so I got one from the front desk. While preparing to leave, she found the one she had. She said, “Honestly, Richard.” I have a tendency to think that when she discovers something that was misplaced, she would feel better knowing that she had not done something strange with the item. She had simply overlooked it. On balance, however, I can easily see that she knows that the forgetfulness is getting worse and it bothers her a great deal.

It is not simply forgetting. She also overlooks things a good bit. For example, yesterday she told me that she couldn’t print because the printer cable was missing. When I went in to see, I saw that the cable was connected although it was mingled with a cord from a lamp.

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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.