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Changes and Expressions of Appreciation

Change is gradual and impossible to detect from day to day. On the whole, however, I would say that Kate has exhibited a number of changes in behavior. I take all of them as signs of her continued decline and drift away from me. I have noted her desire for independence a number of times. This is pretty strong and I believe the result of my trying to help her so much. She has become resentful of that and tells me that I don’t think she can do anything on her own. She is not far off base on this judgment. She makes so many mistakes that I find myself trying to head them off. She even resists taking my hand as we cross streets or go down stairs. I have offered numerous times to help her clean up the clothes in the three bedrooms. She won’t hear of it. She says she is working on it. In fact, recently she has been doing so. This past week I had planned for us to go to Panera during the morning while our housekeeper cleaned. She wanted to do so, but she started cleaning her office; so I let her do that. She was getting some satisfaction from doing it, and it really needs to be done. She works very slowly; so she didn’t get far. Then she messes up faster than she is able to clean up.

She is washing clothes more regularly, something else that I believe arises from her desire to be independent. It also comes, I think, from her not be able to do so many things that she gravitates to those things she is able to do.

I have commented on her developing a sense of humor. She hits me pretty hard for being so compulsive. Sometimes the way she says things doesn’t sound humorous at all. I am wondering if she isn’t moving toward being irritable. I hope not. It is much easier to take when I think she is teasing me. This is something I may say something about, but I don’t want to make her angry or try to get her in a conversation she is not equipped to handle. This is very delicate.

As I begin to look at all the things going on, I am more convinced that 2015 is not going to be a good year for us. I have talked to more people about her AD in the past few months, and I have been writing more in this journal during January than I have done in quite a while. That may signal something about me as well as about Kate. I am going through more frustration, sadness, and possibly fear of the future. I am in the midst of planning our trip to Switzerland in May and am wondering about modifying my plans to make things even more leisurely than I had originally planned. Rushing her is the worst thing I can do.

Let me also make a note about her expressions of appreciation. At the same time her irritability seems to be increasing, she is also expressing more appreciation. She frequently says, “You take such good care of me.” I believe she is truly sensing her decline and recognizes how much she needs me even as she is fighting for her independence. At any rate, I much prefer the appreciation than the irritability.

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A Moment of Realization

Although I have made it clear that Kate’s short term memory continues to decline, and I am looking at 2015 as a turning point to a more serious stage of Kate’s AD; sometimes there are moments that shake you just a little. Such a moment occurred yesterday afternoon.

Following our lunch, we were in Belk’s when I received a call from Ellen that she was locked out of her car and needed to get to a 3:00 pm appointment. I told her we would be there to pick her up and take her home to get a key. (First, I should say that Kate and I had gone to see Selma the day before. Because it covered events that were especially relevant for our generation, it had an impact on both of us. On the drive home, we talked about the movie and our memory of racism as we were growing up. Once home, Kate went to her computer and did some checking on the actual events as she often does after we have seen a movie.)

As we were driving to pick up Ellen, the radio was tuned to NPR. They did a segment in which they mentioned Selma. Then Kate said, “When are we going to see it?” I hesitated a moment, and she repeated her question. I told her we had seen it “yesterday.” She then hesitated a moment as though the significance of her memory lapse has startled her as well. Then she said, “Well, I remember my birthday luncheon” that had been the day before.

It is not unusual for Kate to forget things so quickly. This happens all the time, even during the same day or even after a few moments. The difference in this particular lapse was that the movie had had such an impact, we had talked about it, and she had explored the events on her computer after getting home. I took that as a signal that the AD is entering a more serious stage.

I want to add that after I had told her we had seen the movie, she thought about it a moment and then remembered that we had seen the movie. She specifically pointed out a number of things she had remembered correctly.

This morning before going to the kitchen to fix my breakfast, I reminded her that today would be a busy day for us. She asked what we were doing. I told her we would go to lunch and then to a memorial service for one of her PEO sisters at 1:00 and then go directly to a 90th birthday party for another mutual friend. Then tonight we are going to see Broadway Bound. Before going for my walk, I told her that our friends, the Robinsons, were not going to be able to attend the Live at The Met performance of The Merry Widow after all because the tickets were sold out. We had originally planned to go ourselves, but we have the memorial service and birthday party. While on my walk, I got a call from Kate saying that Ellen had called and invited us to go see The Merry Widow with her this afternoon. I told her we were going to the memorial service and to the birthday party. She simply didn’t remember. This kind of thing is happening all the time.

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Kate’s Birthday

At the moment we are both sitting in front of the fireplace on a cold, overcast day. It is a bit dreary but we have no rain. Kate  is having a good birthday. She got a call from Sharon, her cousin in Dallas. Ellen hosted a surprise birthday lunch at one of her favorite lunch places. She was totally surprised. I hadn’t mentioned anything about the lunch, and she never asked. One of the things I have noticed is that Alzheimer’s  has led to her not thinking about such things. It is easy to surprise her. She doesn’t read any clues that something is up. In this case, the only thing I said was thirty minutes before leaving. I told her we were going to meet Ellen for lunch.  She didn’t ask or say anything. She just went along the same way she would have on a typical day.

She has heard from a number of her Facebook friends. Several of those were responding to a video I had posted on my Facebook page as well as hers. I had selected pictures of her at different ages and places from 1941 to 2014. This was a short video (about 13 photos), but it gave a nice portrait of our lives together, especially places we have traveled.

This leads me to point out something else that is indicative of her Alzheimer’s. She hasn’t thanked me, hasn’t asked how I made the video, or even how I found two of the pictures which I had gotten out of an album her father had made before she was five or six. In the old days, she would have acted very differently.

The big hit was the luncheon. She was taken by surprise and mentioned it several times after we got home. I am so glad Ellen did this.

Tonight we go our for dinner. Since we eat out every night anyway, that will seem like an ordinary dinner.

I am trying to imagine what she will be like next year at this time. It hurts to think about it.

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Everyday Confusion

We are sitting here in front of the fire. I have the Cowboys-Packers playoff game on. About 10 minutes ago, I showed Kate a video that a friend  had posted on Facebook. It shows a cruise ship in rough seas. The first part of the video was taken from a helicopter or plane of the ship bobbing up and down as well as left and right. The second part of the video was shot from a camera in a dining or lounge. The latter video shows people, tables, chairs, and other non-fixed equipment sliding from one side of the room to the other and back again. It is staggering to watch. It would certainly reinforce any fears of cruising that anyone might have. Kate started to put the iPad down after the first part, and I told her to keep watching. She never said a word. When the video was over, I asked if she understood what was happening. She said no. I then explained. Then she understood. I then said, “I should have given you the explanation before just asking you to watch it.” She gave me a glaring look and nod of agreement. This is a common occurrence when I am telling her something. The difference is that in most instances where I have not given a proper setup it is usually harder to understand than this video. This is a very clear video of exactly what it is. The fact that she did not understand explains why she does not react or understand so many other things in conversation or on TV or in movies. She is further along that even I fully realize.

This brings to mind another clothing issue that came up before our going to lunch. When I arrived home from Sunday school (she didn’t want to go to church again today), she had not dressed to go out. She told me she was trying to find something to wear. Thinking about the 5 pair of slacks we had just bought on Thursday and the turtleneck sweaters she has still not worn, I asked if she would like me to help. She told me no and to “leave me alone.” I said “you really don’t want my help. You want to do it yourself.” She replied with an emphatic, “Yes.” When she came out to the family room for us to leave, she was wearing old clothes. There was nothing wrong with what she was wearing, but I fear that she has no idea where the 5 pair of slacks are located.

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Everyday Examples

Last night we went to a symphony concert. I made dinner reservations. She decided to take a nap before going out. Knowing that getting ready, especially getting ready on time can be stressful for both of us, I told her we would leave in an hour and twenty minutes. When we had about 35 minutes before leaving, I told her it was time to get ready. She got up willingly and right away, something she hasn’t always done in the past. I mentioned that because of the cold, she might want to wear one of her new turtleneck sweaters, none of which she has yet worn. Two of them were purchased in early fall, the third we bought this past week. She was immediately offended by my suggestion. She reacted abruptly and asked me to “just leave me alone.” I did so. When we were 5 minutes away from departure time, she came into the family room fully dressed and asked me, “Is this too casual for tonight?” It was too casual and is something she wears quite regularly. The cut itself, not long sleeve and a large opening at the neck, was not right for a cold night. I suggested she try one of the turtlenecks. She then went into a panic from which she did not fully recover until we were on the way to the concert after dinner.

At the restaurant, we bumped into the pastor at our local Unitarian church as we walked in. He was with a friend, and we chatted with them a few minutes before sitting down at our table. You would have never thought there was anything wrong. Once we were seated, however, her posture and the expression on her face clearly indicated she was trying to calm herself down from her panic. She didn’t talk except in response to my questions, and I tried not to talk too much because she was not in a talking mood. (I might add that I have created a playlist of soft relaxing music on my iPhone. I played this from home to the restaurant and from the restaurant to the concert and then back home. It is a mixture of classical (mostly) and popular music. I put this together just for these situations and use it fairly frequently; so frequently that I periodically move the order of the pieces so that it does not seem so repetitious as well as making sure songs nearer the end of the playlist actually get played.)

When I drove into the line for valet parking, she said she wanted to get out and go inside because it was so cold. We usually get out of the car together. This time I said, “OK. I’ll meet you inside” and paid the valet. Then I went inside to meet her. I went in the main entrance where we usually enter. I didn’t see her. I saw quite a few other people that I know and asked if they had seen Kate. No one had. Then I started walking around the lobby area and even went upstairs where we would enter to reach our seats. I still didn’t find her. When the lobby cleared out, it was easier to see who was left. It was clear she wasn’t on the side where we usually enter. I walked to a desk on the other side where I saw someone I know and asked if she had seen Kate. She had not. Then I looked a little beyond her and saw Kate waiting on the other side of the lobby. I don’t know exactly why she was in that spot, but I do know she does not remember locations very well. I suspect she got out of the car and went into the hall through another entrance. This would have required a further walk since I was letting her out near the main entrance, but she could easily have forgotten about that entrance. Interestingly, she was not in a panic although she was a little irritated that I had taken so long. I didn’t even ask how she happened to be there. I have learned that she does not like to discuss such things. I believe it is because it is hard for her to remember how something like this occurred. She can’t explain it. Anyway all turned out well. The concert was not an exciting one for her. It was clear by looking at her that she was ready to go home before the first note was played, but she never said a thing.

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Big Week for Communications

Coming off the holidays, I have had a more relaxed scheduled. Perhaps that is what led me to take a number of steps to communicate with some people that I don’t regularly communicate with.

On Wednesday or Thursday, I sent a letter to Ken and Virginia via email updating them on our situation here. I have felt a need or responsibility to communicate with them much more than I have in the past. It has been over a year since we told each other about Kate’s and Ken’s illnesses. Since there are so few people who know, I have felt that I should reach out to them and make sure they know that I care about their situation as well as our own. I posted this exchange below. I trust it will lead to further exchanges in the future.

I also called Betty,my dad’s brother’s wife, to make sure that she knows. After a fairly lengthy conversation, I told her that I wanted to update her on things in Knoxville and thought that she might very well know what I am about to tell her. It turns out that she had believed that Kate was in the early stages of dementia. I thought that she might have suspected because of her times with Kate during the past few birthday celebrations for Dad. I was correct. She related a number of things she had observed, mostly during the days leading up to Dad’s 100th birthday.

Yesterday I called my former dentist. I have known for quite some time that his wife has dementia. His son, my current dentist, had suggested that I call his dad. I am not quite sure that I called to get tips or simply to connect with somebody going through what I am experiencing. Whatever the reason, I did find that his wife is much further along than Kate. That means he is feeling the need for support more than I am at the present time. He told me a little about his wife and his struggles. I told him a little about ours. At the end, we agreed to get together periodically. He seemed interested, if not eager, to do so. I told him I would take the initiative and call him to arrange something.

Finally, I had an hour-long conversation with our son, Kevin, yesterday morning. This one was initiated by him. He has been interested in staying in touch and doing whatever he able to do since I told him of Kate’s Alzheimer’s almost a year ago. During our conversation he mentioned once again the possibility of his making a trip to Knoxville, perhaps along with our daughter, Jesse, just to stay in touch with Kate. He really wants to do whatever he can to help her. I told him there is really very little he can do except to stay in touch with her. She loves to hear from her children and grandchildren. We specifically talked about a visit in March.

I have enjoyed the communications with these people and should make an effort to do more of it in the future. I do recognize that I am like my father in that I am energized by interaction with other people. As Kate continues to decline, I will probably need more of this to keep my spirits up. In my conversation with my former dentist, he said that he missed being able to have a conversation with his wife. He also noted that his social contact had diminished as his wife had declined. He noted that even her best friend only stopped by about twice a month. I have seen this with Dad. More importantly, I have noticed how this has happened in my contact with other people who are now in nursing homes or confined to their own homes. This means I will have to work hard to keep from becoming isolated. I hope that I will be as successful at this as my dad was.

In all my communications I have tried to convey that up to this point, Kate’s and my relationship has been strengthened and that we are enjoying ourselves despite the adjustments we are both making. Right now, for example, we are sitting in front of the fireplace. It is a cold morning, and I know how much a fire means to her; so I built one. This is not a great sacrifice on my part. I also enjoy it. During the past 3 winters, I have made it a practice to have more fires than we had prior to her diagnosis. It seems to comfort her. When she is comforted, I feel better as well. As they say, it is a “win-win situation.

I have been journaling while Kate works on her pictures. She also enjoys looking at them. Sometimes I think she gets more out of just remembering the past than preparing a photo book. As I have noted before, I do not expect that she will ever finish another one, but I don’t think that is what matters. It is wonderful that she has a project to work on in the same way that her work in the yard is good for her.

While I am writing, I should mention that this Thursday I took her to her monthly PEO meeting. She was to call me when I was to pick her up. I got the call around 11:30 while I was talking to Betty. When I got there, I noticed that all the cars were still parked on the street in front of the house. I went to the door and rang the bell. The woman who was hosting that day answered the door and said they were still meeting. I told her Kate had called me. She said she knew but that she thought Kate had forgotten that they hadn’t yet had their program; so I waited in the living room until they were through (about 20-25 minutes). This just an example of the many points of confusion that occur each day.

On the way home from PEO Kate told me that she had volunteered to have the meeting at our house in April 2016 and was going to give the program. She plans to do a program on the wild things we do in our youth. She is going to tell about our trips with our children to Spain and France and to Colombia. The first thing I thought of was what she would be like when the time comes. It wasn’t easy for her to host and do the December program, but by April 2016, I can’t imagine that she will be able to do it. Now I will consider whether to alert the program chair so that they can be prepared with a backup.

Short-term memory continues to be a big issue. Two weeks ago, perhaps less, we went to see Into the Woods. She saw a trailer for the movie this week and said, “that’s one that we’‘ll have to see.” She had completely forgotten that we had seen it.

As I have been writing, she asked me if I knew anything about The Judge. I told her that I did and gave her a little information. She had no recollection that she had asked me about this earlier this week. I didn’‘t tell her we have seen a trailer for this movie at the theater at least two times.

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Reflecting on Christmas in Memphis

We got home from Memphis late yesterday afternoon. We had a great time with Jesse and her family. Kate had an especially good time. She enjoys being with Jesse and her family as well as their neighbors, Jeff and Sally, across the street. As she usually does, Kate handled herself well at the reception. She introduced herself to people and had conversations with them. On Christmas afternoon, Jeff and Sally came over before we had Christmas dinner. They were there about 30-40 minutes. Kate and Sally were in their own conversation the entire time.

Kate continues to speak a lot about her family. She also is very expressive about how much she enjoys things (food and people). Yesterday morning I asked Jesse if she had noticed anything different about her mother since they were last together. She said she didn’t though she said she noticed Kate seems more expressive about things. I told her that confirmed what I had heard from Kevin at Thanksgiving. I reiterated to her what I have said here and to others. The good thing about this illness is that she is able to get along so well in social interaction with other people. There are only little things that someone who is close to her might notice. For example, Jesse and I both noticed that when she was speaking to Kevin’s children on Christmas evening, she was thinking that Christmas would be the next day. She asked at least one of them if he was excited about tomorrow and getting presents though that had already occurred that morning.

When we were in Fort Worth for Thanksgiving, she received a directory for her high’ school class. She has misplaced it and has wanted to send email Christmas messages to a number of her friends. She asked me about it several times during the week preceding our trip. At least one of those times she thought I had it. Once she asked me was immediately before the trip. She asked me a couple of times during the trip. She may have asked me about it last night. I know she asked me about it a few minutes ago. Again, she thought I had it. I told her that it was misplaced a couple of weeks ago and that she had said she was going to contact a Waco friend about getting another one. Even though I am quite aware of her forgetfulness, it is surprising to me that she would so easily forget something as important as this directory and after so many times that she has mentioned it to me, and I have told her it is misplaced. I am confident it is here in the house because I can’t imagine her taking it out with her.

One of the days we were in Memphis I got on the Alzheimer’s website and reviewed some of the entries on the caregiver/spouse forum. I found this quite depressing and don’t intend to go back until Kate’s condition has progressed much further than it has so far. I was reading all the horror stories involving bathroom habits, changing bed clothes, etc. It was too depressing.

It did give me two impressions, however. First, Kate is not nearly as far down the path of Alzheimer’s as others. Second, it reminds me what I may face with time. That sensitized my observations about her increasing memory failure. That made me wonder just how much time remains that we can enjoy ourselves. We are truly enjoying ourselves even with the memory issues. When she is no longer able to enjoy social activities or people and can’t remember friends, I will have more of a problem.

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Leaving for Memphis

Last night Kate asked me what time we were leaving for Memphis. I told her 10:00 although I was really shooting for 10:30. This morning she asked again. (I had not expected her to remember from last night.) We had awakened early (5:00 am). I told her 10:00. But that we could leave earlier if were ready. Around 8:00 she was on her iPad in bed and asked me what time we were leaving. I told her 10:00. She got up and started to get ready. At 9:00 she told me if she were not ready when I was ready, I could just wait. That is what I have been doing since. Just before 10:30 I went to the back of the house where she was putting up some clothes. She asked what I wanted. I told her I was just checking and wondered if she had a progress report. She asked me what time we were leaving. I told her we were going to leave 30 minutes ago. Then she panicked and said, “Why didn’t you tell me?” I told her that I did. She insisted that I hadn’t. I told her I was sorry. She has been scrambling ever since though it looks like she could be ready any minute.

She just called to me. She wanted to know where her boots were. I told her the last I had seen they were on the bed in the bedroom.

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Wondering About The Future

Kate and I are fortunate that we are able to get along so well. We enjoy life and each other. At the same time, I believe I have also noted that she has had a gradual decline in her memory, primary short term but also long term memory.

Occasionally, I have raised a question about the future. For a long time, I was concerned about when to let the children know. Then I wrestled about when to tell others. I have told a number of people over the past year. I first told our pastor because he had noticed something different about Kate. Next was (I believe) Ken and Virginia right after Dad’s 100th birthday. In January of this year I told the children. After returning from New Zealand, I told Tom and Carl. This summer I told my staff. This fall I told the Greeleys and a couple at Chautauqua friends. I also told one of the church secretaries at church.

I am still wondering about telling two of Kate’s cousins. I am thinking of doing so in January. When I tell them, I will also feel the need to tell Naomi Richardson. She was the woman who had been a long-time friend her Kate’s mother. She also worked as a local manager of her mother’s everyday affairs including supervision of in-home caregivers.

More than wondering about when to tell people, I also wonder what life will be like this time next year. I am already looking carefully at our travel plans with the anticipation that it will be more difficult for us to travel after next summer. Right now the only foreign travel I have planned is to Switzerland in May. I think that could be our last foreign trip. In addition, we are planning a trip to New York in June with Jesse and her boys and Kevin and Taylor. The only other trip planned at this point is our annual trip to Niagara-on-the-Lake and Chautauqua at the end of July and the first week of August.

One reason I write on this now is my reflection on the very slow decline that Kate has experienced. I see that many things are more difficult for her now than in the past. One of those is in short term memory. She forgets things very quickly. It is as though it goes in and out of her brain at almost the same time. The other thing I notice is how difficult it is for her to use her computer.

I have just taken a 10-minute break to help Kate. She had been trying to send online Christmas cards while I was writing today’s journal entry. She told me she was going to take a break, that she was just too frustrated right now. I told her I would help her later in the day. I had also volunteered to do so after we returned from lunch, but once again, she tried to do this independently but just couldn’t do so. She keeps making simple mistakes that prevent her getting any cards out. These are not isolated incidents but very common ones.

A few minutes ago, she walked into the kitchen. She was trying to zip a jacket to wear outside where she is now pruning her plants. This is her therapy. She begins to go stir crazy in the house all day working on her computer or doing jigsaw puzzles. She started pruning months before Dad’s 100th birthday in early 2013 and hasn’t stopped since. In fact, the shrubs never did grow back fully during the summer. Though now is a good time to prune, they don’t need it. It simply gives her something to do that doesn’t frustrate her.

Back to the jacket. She entered the kitchen trying to zip the jacket. She gave up in frustration and asked me if I would zip it. When I tried to do so, I noticed that she had her jacket on inside out. This, too, is a common occurrence. It is increasingly difficult for her to differentiate such things. Once she put the jacket on the right way, I zipped it up, and she went outside to prune. In a moment, she called to me asking where her new clippers were. She was referring to the clippers we bought at Lowe’s on the way home from lunch. I know these must be the 7th or 8th ones I have bought for her since the beginning of spring. We both looked for them. She finally found them in the garage. She had put them in a good place, but not the usual place for them. She was pleased that she had found them and not I. Each time I solve a problem for her it is a setback for her. When she is able to solve her own problems, she feels better.

When we were at lunch today, I mentioned a couple of things to which she asked, “How do you remember those things?” She is amazed when people remember simple things because she cannot do so. Along this line she continues to give higher praise to others and to performances than I believe justified. This is a good quality, but I take it as a clear indication of her inability to differentiate the good from the bad or better said, what is good and what is outstanding. These and other things make me wonder what will she be like a year from now.

One final note. She expresses things that confirm that she doesn’t realize how far along she is. Last night, for example, while she was telling me about her plans for several books of family pictures she is working on, she said there was no hurry. There is plenty of time. I encouraged her thinking and told her she could just work at her own speed. There is no deadline. My prediction is that she will never complete any one of the three (I believe) she is working on. I am sure she will experience increasing frustration trying to work on the computer. That will surely mean that she cannot finish this project that she values so much. This is sad.

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More Frustrations

Late yesterday afternoon Kate was working on her laptop trying to send online Christmas cards to a couple of friends. Like everyone who uses a computer she encountered some problems that were not a function of her own action but others that clearly were. The first was discovering that her subscription to Jacquie Lawson had expired. She didn’t know what to do; so I signed her up for another two years. I assumed that she is unlikely to be doing such things after that. If she is, we can sign up for another year or two.

The big problems she encountered were of her own making. First, she was trying to enter the recipient’s email address in a space where she should sign into her account. There was also a place to enter a password. She never realized she had made this mistake, and I did not tell her. I feel that would only depress her. The second problem involved where and how to enter the recipient’s email address and to send it. She must have worked 15 minutes trying to get Ellen Seacrest’s information entered correctly. During this time she was very frustrated. After she had sent the message, she wanted to send another card. It was like starting over. She hadn’t remembered anything about how she had done the first one. I had helped a good bit on the first one; so that partially accounts for this. She was really trying to do this by herself. After a long period of time, she gave up. She said she wasn’]t going to work on it until tomorrow and that she had reached a point at which she wanted me to help her.

This was the highest level of frustration I have seen in quite a while. It comes at a time when she is trying so hard to be independent. Earlier in the day we had been talking about my diving in too quickly to do things for her. She told me she knows I mean well, but that she feels like a child when I try to do so much for her. This topic is becoming a frequent one for us.

Today I received an email from someone with a link to a New York Times article on Alzheimer’‘s. In that article I learned of a documentary on Glen Campbell. It apparently follows him during his last musical tour (150 performances, I believe). He was diagnosed in 2011, the same year as Kate. I noticed in the article that he is now in institutional care and that during his tour he displayed behavior that I have not witnessed in Kate at all. This makes me feel that we are truly fortunate that Kate and I have had so much time to enjoy ourselves and that we still have time ahead. At the same time, stories like those of Glen Campbell make me wonder if I am blind to how little time we may have left. Right now, I believe that Kate’s decline will continue to be gradual and, perhaps, punctuated by periodic drops downward. Based on the past four years, I have a hard time believing that next summer she will be dramatically different than she is today. I hope I am correct.