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A Common Occurrence

Kate and I are in the dining area of our hotel where she is having some juice and yogurt. She has her iPad with her as do I. She is still waking up even though she has been up almost an hour and had her shower. That is quite a contrast with my own morning pattern. I wake up ready to go immediately. This sometimes (often?) leads me to spring into conversation more quickly than she would like. That is especially true with her Alzheimer’s. She is much slower getting ready for social interaction in the morning. So here’s what happened a few minutes ago.

Last night I received an email from Ken in which he thanked Kevin and Rachel for hosting the Christmas dinner. He included several photos taken yesterday and attached them to his email. I hadn’t shown them to Kate last night because she had already gone to bed. While Kate was working a jigsaw puzzle on her iPad and eating her breakfast, I remembered the pictures and showed them to her. There were only four or five and had gotten through two or three when she said, “Do we have to do this now? Can’t we do it later?” I quickly realized I had misunderstood her priorities at that moment. She just wanted to relax quietly with her breakfast and iPad. I thought she would be eager to see the pictures. Once again, I was seeing things from my own perspective and not hers. She even said, “You always want to do things when you want to do them.” Herein lies one of the challenges for a caregiver of a person with dementia. You are always working to think of things to help but discovering that you aren’t always able to see things from the perspective of the one you want to help.

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Christmas in Lubbock

We had a very nice Christmas Day. It was special in several ways. This was Brian’s first Christmas at home as a college student. It was also the first time that Kate’s brother, Ken, and his wife, Virginia, had joined us for Christmas dinner. Rachel’s parents, Linda and Scott Livingston, who live in a small town outside of Lubbock also joined us. It was hard for me to get out of my mind the thought that this might very well be the last Christmas that Kate and I will be here. As noted in my earlier posts, the way things are going so far I suspect it will not be possible (or wise) to bring her back two years from now. I am not even sure that we will make it to Memphis to be with Jesse’s family next year. My only regret is that we didn’t get to spend more time with Virginia and Ken. I’m already thinking about the possibility of another trip to see them in the spring.

It is very difficult for Kate to follow what is happening in a group situation like this. She responds by being quiet and tuning out on much that is going on. She continues to have difficulty remembering that we are in Lubbock. She pulled me aside at the gathering today to ask, “Where do these people (our son and his family) live?” Although she doesn’t say much, I do think she enjoys being in the company of family, especially for Christmas.

We started the day earlier than previous days. Kate was ready for breakfast by 8:00. I had brought breakfast back to the room for myself a few minutes after 7:00. We went back to the breakfast area where Kate had some juice and yogurt. We were there about forty-five minutes before she wanted to go to Panera. We did, but it was no surprise that they were closed. We came back to the hotel until time to leave for Kevin’s house. We were there just before 10:00.

Everyone chipped in to make the Christmas dinner. As usual, we had plenty to eat and good conversation. Kate’s brother and his wife as well as Rachel’s parents left not too long after dinner. We spent the remainder of the day relaxing. Kate worked on her iPad while I watched a little football. We also played a game or two. Kate didn’t participate in the games. She was happy with her iPad. Before coming back to the hotel, we enjoyed some of the leftovers. It was a nice Christmas.

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More Confusion and Recognition of It

It has been another nice day with our son’s family. It is Sunday, so they went to church this morning. I chose not to go thinking it would be good to let Kate get up leisurely and have a relaxing morning. Kevin called us after church, and we met him and his family at a local hamburger place for lunch. Then we came back to the house for the afternoon. We watched a couple of football games. Kate worked puzzles on her iPad. She did rather well, but I could tell she would have liked a change of scenery. When I asked if she would like to go back to the hotel, she said no. Thus we stayed at the house until time to leave for their annual Christmas Eve church service. We attended with them as we have done in the past. We came back to the house and had chili that Rachel had made. Then we came back to the hotel where Kate quickly got ready for bed. She didn’t even work on her iPad and was asleep in no time.

Despite having a nice day, Kate continued to be confused about where we are. I know she must have asked me almost ten times. That began this morning when we went to the car to go to Panera. She asked, “Where are we?” She asked again as we were leaving and also as we were leaving lunch. When we got back to Kevin’s house after lunch, she got out of the car and started pulling leaves from a shrub in front of the house. She had pulled only a few when I told her I thought we should go inside. Yesterday afternoon at Kevin’s she had said, “I can pull a few leaves.” It was a statement but really a question. I told her this was Kevin’s house and that might not be a good idea. She accepted that without a problem.

Tonight when we got out of the car at the church, she pulled me aside and asked, “Where are we?” I told her we were in Lubbock. She said something about knowing that. I told her she could ask me as many times as she wanted. She said, “And you don’t even make fun of me.”

Apart from the confusion, Kate has seemed melancholy. I noticed the first signs during the church service after we had sung “The First Noel.” After that it appeared that she wiped a tear from her eye. I asked if she were all right. Of course, she said she was. She enjoyed the service. It involved a lot of music. She especially liked a quartet’s version of “O Holy Night.”

We left Kevin’s right after dinner. After we got in the car, she asked if we were in Fort Worth. I told her we were in Lubbock. Then before I got out of the drive, she asked again. When I told her Lubbock, she said, “I don’t know why I keep forgetting that.”

In the car on the way back to the hotel, she said, “I know one thing; I am glad I married you.” I told her I was glad to have married her. I told her I wanted her to know she could count on me. She said, “I know that.” Back at the hotel, she seemed very dependent and appreciative of the ways in which I help her. Before getting into bed, she gave me a hug and said, “I don’t know what I would do without you.” I said, “Well, you don’t have to worry about that. I will always be with you.” She said, “I know.”

Her mood makes me think that she is recognizing her loss of memory. I doubt that she is associating it with her Alzheimer’s, but I believe she knows something is wrong. She is feeling more dependent on me. I think traveling brings this out because she has no idea where we are or where things are around the hotel room. Several times she has asked me where the bathroom is. Since I have packed her clothes, she has no idea what things I have brought for her, or where they are. There is good reason she is confused. My deeper concern is that this confusion is not just a result of being in strange places but that it represents a sign of further decline. I fear what things will be like in the next few months. I hope my fears are unfounded.

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Yesterday in Lubbock

Yesterday was a nice day for us. We met Kevin’s family at their house and then went to lunch. Following lunch, we went to TopGolf for a couple of hours. Kate was a good sport. She didn’t want to play. At first, she was disappointed when she realized where we were. It turns out she thought she had to play with us. When I told her she didn’t, she was pleased. I told her I would get her iPad from the car, and she could work puzzles while we played. I brought it to her, but she never used it. She just sat there. She didn’t really seem to be bothered, but she wasn’t enjoying herself. Two hours is a long time to sit while others are having fun. She never complained, and I doubt that anyone else noticed that she would rather be doing something else. I felt sorry for her. We were all having such a good time, and she was just passively sitting there.

As we were leaving, Kevin asked if we might want to come by the house or take a break at the hotel before our having dinner. I asked Kate, and she chose to go back to the house. After a while, I sensed that she might like to return to the hotel. She did. We stayed there until time for a barbeque dinner at our favorite place here. We all enjoyed ourselves.

Despite having a good time, it bothers me for Kate not to have the same level of engagement as she used to. It really is impossible for her to understand and keep up with the conversation. It brings back memories of my mother when she was going through the same thing. I can’t imagine what is going on in her brain. At one point, she asked me, “Where are we?” At the hotel, she has asked a couple of times where the bathroom is. Before leaving Kevin’s family last night, he told us about a game they had bought, Telepathy. His family had learned about it from Kate’s cousin, Tina, who lives in Fairbanks. Kate has always loved Tina. Ken explained that Tina had taught them, and that everyone loved it. It was clear to me that Kate did not understand what Ken had said. I simply called attention to what he had said and made it clear that Tina had introduced them to the game. She understood, but I know she forgot soon after that.

Soon after we returned to the hotel, Kate got into bed. I went over to her side and kissed her. Then I said, “I like spending Christmas with you.” She said, “We’ve had a lot of nice Christmases.” I said, “And we’ll keep on having them forever.” She said, “There are limits you know. We’ll enjoy what we can.” I said, “Yes, we will.” It was said as though she could tell the “light is dimming” on our time together. I know she recognizes that she has lost much of her ability to do things, but I find it hard to believe that she recognizes how close she is to the last chapters in our marriage as it presently exists. The fact that I was perceiving how lost she seemed today makes me consider the possibility that she does.

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Start of Our First Day in Lubbock

Kate and I have had a good night’s sleep. I don’t know if it is not having adjusted to a new time zone or just my normal custom of waking up early, but I was wide awake before 5:00 this morning. I remained in bed until almost 6:00 when I got up and dressed. If Kate got up during the night, I didn’t hear her. That is most unusual. She didn’t get up until 8:00. She was a bit groggy and confused when she woke up. I thought maybe she was wondering where she was. I told her we were in the Residence Inn in Lubbock. She didn’t react at all. She asked where her clothes were. I showed her where I had laid them out before going to bed last night. She picked them up and took them to the bedroom and tossed them on the bed. She had said she was going to take a shower but ended up back in bed for another fifteen to twenty minutes. Then she got her iPad and worked jigsaw puzzles another fifteen minutes. She got up and came into the living area of our room where I was reading the paper. She still looked groggy and confused and said nothing. I asked if I could help her with anything. She never answered and went back to the bedroom. Shortly I heard the shower going. I try to imagine but can never fully grasp what it must be like to get up in a strange place and have no idea where I am. I think I would be a little confused myself.

We are to meet Kevin and his family at their place sometime before noon. Before then, I will take Kate to the lobby for some juice and yogurt. After that, we are going to Panera for Kate’s muffin and to the grocery to buy a roast for the Christmas dinner. I am looking forward to a pleasant day with family.

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To Lubbock for Christmas

Kate and I left for Lubbock this morning. For a couple of years, I have made it a point to take later flights than we used to. That is because she can be slow to wake up in the morning, and I don’t like to rush her. That creates a bigger problem than it solves. I’ve learned that from experience. Today’s flight was a little earlier than I had wanted (11:00), but later flights would have gotten us in later than I wanted.

I had done almost all of our packing the day before, just saving a few things that needed to be done at the last minute. I skipped my walk so that I could avoid any surprises. The one unknown was whether or not Kate would wake up early as she sometimes does or if I needed to wake her. It turned out that she woke up about 7:40. I wanted to leave for the airport by 9:15. I was encouraged until she went back to bed. Before 8:30, I decided to get her up. She didn’t want to get up but said she would. I made a trip to Panera to get her a muffin and brought it back home. When I got back, she was in the shower. I picked out clothes for her and put them in the bathroom where she had laid out the clothes she had worn yesterday.

After she dressed, I noticed that she hadn’t worn the top I picked out. She picked out one that was fine but wouldn’t be as warm as I thought she might need for today. When I explained she accepted my suggestion. It turned out that we got to the airport in good time for us to sit down and relax. She ate her muffin and drank some orange juice.

The only slight issues we had involved going through security. Although I like to carry both her ID and boarding pass along with my own, sometimes they request that each of us hold our own. When the main checking ID asked her to scan her boarding pass, she didn’t immediately understand how to do it. She placed it so the bar code was not over the scanner. I helped her, and we got through that part. The next part was not being sure what she was to do when they asked her to walk through the body scanner. I walked her to the scanner and pointed the way through and told her to walk through it.

After we boarded the plane, she picked up my jacket that was across my lap and put it over her knees and legs. I asked where her coat was. She had no idea, and I didn’t see it. I couldn’t remember seeing it where we had been waiting and thought we might have left it going through security. I spoke with a flight attendant who said I couldn’t get off the plane, but the agent working the gate could look for it. Then it was time to go. They said if they found it, they would leave it with lost and found. When we landed in Atlanta, I asked Kate for my jacket. When she gave it to me, she was also holding her own. It turned out that I had worried for no reason.

The rest of the trip went smoothly although I lost her twice for just a moment. The first time occurred in Atlanta as we started out for our gate. I looked back and could not see her. It turned out that she didn’t see which direction I had turned coming out from the plane. I looked back a short distance and found her. She was just standing there looking around. That happened again as we left the plane in Lubbock. She was right behind me as I was getting ready to turn and walk through the door of the plane. As I walked down the ramp, I looked back and did not see her. It turned out that she had gotten into a conversation with the flight attendant at the door. These are little things that had no serious consequences. They do, however, reveal how easy it is to get separated especially in large crowds. It reminded me of why I feel under more pressure when we travel.

One other thing happened in the Atlanta airport. We walked to the escalator to catch the train to another terminal. I looked back to help her get on the escalator because she has had some trouble recently. She didn’t want my help. I got on the first step and reach out my hand for her. She didn’t want to take it. I started going down, and she wasn’t getting on. I tried walking up but it was moving down faster than I was walking up. Fortunately, a woman came by at that time and helped Kate. Later in the Lubbock airport, we took the elevator instead of the escalator.

As on other trips, I noticed some confusion. In the car from the airport, I mentioned our seeing Kevin and Rachel. She asked if they were staying in the same place that we are staying. I told her they would stay in their own home, that they live here in Lubbock. Then she asked, “What are their names again?”

For dinner, we all went to a Mexican restaurant. As we walked out of the restaurant, we said good night and said that we would talk in the morning about our plans for the day. Kate asked, “Aren’t they staying where we are?” I should add that this comes after we had been at their home less than two hours earlier.

I am happy the day went as smoothly as it did. I am optimistic that we will have a grand Christmas.

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Amidst the Joy of Christmas There Are Moments of Sadness.

This has been a special Christmas season for us. My feelings are no doubt influenced by the belief that next Christmas Kate may be less able to enjoy it. Since her diagnosis we have tried to “live in the moment.” That has carried us through the rough spots along the way and continues to do so. At the same time, there are moments when the progression of Kate’s illness is evident in new ways. When this happens, I feel sadness overtaking me for a short time. That happened in the car after lunch today.

It occurred when I told her that we had plenty of time before our haircuts at 3:00. That would give her time to work in the yard. She tried to get the words to tell me she wanted to do something else. They wouldn’t come. At first, I didn’t guess what she was trying to say. Then I asked if she wanted to work on her albums. She did. I told her I would be glad to get out her computer. She paused for a moment and then said, “First, I would like to pull a few leaves.” I told her that was fine. She could do whatever she wanted. I knew the moment she said she wanted to start by pulling leaves that she would forget the albums. That is exactly what happened. She has been doing something like this periodically. Not once has she actually started on her albums.

These family photo albums are very important to her. She frequently tells me to “remember that for the album.” She says that in response to all manner of things that come up in our conversation. When we are with other people and someone asks her what she has been doing, she often tells them she is working on her albums even though it has been at least two years since she has done anything. Long before that, she was only editing photos, not taking any steps that led directly to assembling the photos for her album.

It is not just this episode that makes me pessimistic about next Christmas. It is many other things that I take to be signs of her decline: Her more compliant nature when I make suggestions, especially about her clothes, her growing dependence on me as reflected in her asking for permission to do so many things, or to help her with her clothes, and more.

We have been very fortunate for such a long time, but I see our quality time together diminishing as she moves into another stage. I will continue to be thankful for the many good times we have had, but I already feel sad about the prospects for the future.

 

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Unexpected Gifts

I have often commented on the importance of our social contacts with servers and other customers at the restaurants we frequent. In particular we have made it a point to learn a little about those who serve us, especially those who are our regulars. This is done without any expectation that they should do anything more than provide the service. They have done that well. Thus, it is a pleasant surprise when they respond to us in any special way as two of our servers have done this week and both involve something as simple as a Christmas card with an accompanying note.

The first came in the mail yesterday. It was from our server at a restaurant in Asheville. She has served us the past four times we have visited there. On Sunday, she had asked for our address, but I didn’t think anything about it until her card arrived. I was both surprised and touched by her thoughtfulness. Here is what she said.

Mr. Richard and Mrs. Kate,

 You will never know how the 2 of you have touched my life. Your example of love & devotion to each other is one of the greatest things I’ve had the pleasure of experiencing.

 Thank you for blessing me with this wonderful gift! You will be in my thoughts & prayers.

 Merry Christmas & Happy New Year!

 Melissa  

Today at Panera, one of the young men working there came to our table and gave us a card with another kind note.

As the holiday season is upon us, I think of all the benefits of being where I am. I quickly think of my relationships with great people like you.

 I find myself reflecting on the past year and those who have helped to shape my day-to-day life. It’s been quite a year for us all. I hope that 2018 will be just as memorable for you, your friends, and your loved ones.

 The end of the year brings no greater joy than to express to you season’s greetings and good wishes.

 May your holidays and New Year be filled with joy.

 Your friendly neighborhood barista,

 Dave

Both of the remembrances meant a lot to Kate and me even more so because we would never have expected them. Perhaps that is a good lesson for all of us. I wonder who we can surprise with a word of kindness in the coming year.

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Making Use of Time While the Sitter is With Kate

At the moment and for the next hour, I am at Whole Foods. This isn’t something I planned. It just seemed to be the best option for me right now. I left home shortly after the sitter arrived. Normally, I would have gone to the Y, but I had a meeting at United Way at 2:00. At the last minute, the meeting was changed to 3:00. Then I thought I might get together with Mark Harrington who is helping me with the technical aspects of getting this journal ready to be launched as a blog. He and his wife have recently moved to a new house. It turns out that he has a commitment to meet someone who is doing some work for them.

That has left me in a peculiar situation. I usually have a definite plan for the four hours the sitter is with Kate. Today I didn’t. The good news is that I always have things I can do with my journal. Almost all of them involve reviewing all previous entries and putting them in categories so that readers can sort through them for things of special interest. I don’t foresee that I will finish doing that before my launch date in January.

Having a bit of time that I need to fill is not something that happens very often. I either have plans or I have other commitments that demand my attention. For a while, I was concerned that four hours was not sufficient time for me to do the things I needed or wanted to do. For that reason, it feels funny to leave Kate with a sitter. It is as though I have a sitter but don’t need her today. I wonder if other caregivers ever find themselves in this situation.

That reminds me that yesterday I spoke with the agency that provides the sitters. We were making arrangements for the January schedule. They asked if I would want someone on New Year’s Day. I told them I didn’t.

I just got a call from my contact at United Way. They are now thinking of handling the 3:00 meeting by phone because of the weather. That is fine with me. That may give me a little more time this afternoon.

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Confused, But Very Good-Natured

This has been another very nice day. The moment Kate got up she was in a very good humor. I don’t mean to suggest that she is usually in a bad humor, but sometimes she can be a little grumpy.  That is before she fully wakes up. That was not so this morning. On the other hand, she has displayed confusion throughout the day. For example, she got dressed this morning before I reminded her that a church friend had invited us to lunch. She was dressed more casually than I thought she should be. When I noticed what she was wearing, I told her that I had forgotten to remind her that we were going to lunch with our friend and that she might want to wear something else. She very nicely told me she thought what she was wearing was fine. I quickly decided not to make an issue of this and told her that would be fine. It was only after we had left the house that I noticed that she was wearing shoes that didn’t match in color or style. I let it go, and everything was fine.

On the way to the restaurant, she asked me who we were meeting. She asked at least three times before we got there as well as after we left her. Despite this confusion, she got along beautifully at lunch and following lunch at our friend’s home.

As soon as we got home, she went outside to work in the yard. I let her know it was getting close to dinner time almost three hours later. She had been sitting in the flower beds cleaning out weeds and other debris. For that reason, her clothes were visibly soiled. I thought she might be planning to come inside, take a shower, and put on clean clothes. As it turned out, she just washed her hands and was ready to go. I suggested that she change her clothes. She accepted my suggestion. I brought her a change of pants and a top. I gave them to her and said, “Here are your clothes.” I walked out of the room. When I returned, she was at the back door ready to go to the car. She was still wearing the dirty clothes and carrying the clean ones. I told her I meant for her to wear the clothes in her hands. She didn’t object at all. She was very agreeable and made the change I had suggested.

We went to a Chinese dinner tonight. Soon after we were served, I asked her how she liked the meal. She said it was “good, but not great.” She made a similar comment a little later. Toward the end of the meal, I noticed she was about to finish her whole meal. It was a generous serving. I made a comment, and she responded with, “It’s very good.” This kind of shift in her evaluation of things is quite common. She can easily say that she likes something one minute and dislikes it the next.

When we got home, she walked into our bedroom with her night clothes and asked, “Are we staying here tonight?” This is something else that is not unusual. I have suspected that this occurs because we occasionally we stay in a hotel or the home of our daughter. It must not fully register than we are home.

Given the confusion of the day, one might think it might not have been a good day. But it was. I am glad. I’ll go to bed feeling good.