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Coming Home

I am glad to report that our travel home yesterday was uneventful, that is, we had no trouble at all. Anytime we are facing activities or appointments that have definite time demands like airline flights, I worry a little about making sure Kate is ready. It may seem strange, but we actually encounter fewer problems like that now than in the past. I find that Kate really works harder to get ready than she used to. That is part of a general pattern. It is as though she recognizes that she is not in control and feels the need to work harder. I don’t mean that she appears frantic about it. It is just that she seems more attentive to doing things “the way they should be done.” For example, until Alzheimer’s began to take its toll, she always made up the bed shortly after she got up. Over the years I have heard her say, “My mother taught me to always make up the bed.” She stopped that for quite a while. Within the last six months she has begun to partially make it up once in a while, not daily and not completely. She pulls the covers over the bed and throws the pillows in their approximate places. She also hangs her clothes up more regularly though she doesn’t hang them in what I consider to be the “proper places.” Although it saddens me somewhat to see that she has to work hard to do the right thing, I believe it is a good thing that she is taking more responsibility. She still wants to be independent. I want that to continue.

She was still sleeping soundly yesterday morning at 8:15 when I woke her up. Kevin came over for a short visit before we went to the airport. She didn’t want to get up, but she did without a complaint. Kevin dropped by at 9:15. She was ready, and I had everything packed. That gave us a brief time to be together before leaving at 10:00.

The rest of the trip went smoothly. We arrived in plenty of time. I had been a little worried that we might be rushed, but we had sufficient time to gas up the rental car, return it to Avis, check in, have lunch, and still be early enough to have some waiting time before boarding. This eliminated any potential stress that might have occurred otherwise.

We stopped by our favorite Mexican restaurant on the way home from the airport. Our server last night was a comparatively new one. It turns out that she is from Venezuela. I had a nice conversation with her entirely in Spanish. We told her that we had visited Venezuela many years ago. I think she liked that. We also bumped into an acquaintance from the Y. He was with his wife, children, and grandchildren. We had a nice conversation with them as well. For me it was just another reminder of the value of eating out.

Kate got into her night clothes pretty quickly and right into bed. She worked puzzles on her iPad for well over an hour before calling it quits for the evening. She and I both slept well although she coughed a good bit during the night. She seems better this morning, but we are both still struggling from the cold we got three to four weeks ago.

We got right back into our routine this morning. We made it to Panera about 9:30. Kate was ready to come home at 10:30. After a short break, she wanted to work in the yard despite the fact that it was 36 degrees. At least the sun is shining brightly. She has been out there almost an hour. I am about to call her in so that we can make our way to lunch.

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Boredom and the Need for a Change

Over the past few years I have come to recognize the value of a routine for Kate. As someone with a touch of OCD, I have always liked routine, but that is something that does not come natural to Kate. As I have assumed a greater role as the person in charge, I have guided us into a regular daily pattern of activities. That involves letting her sleep as long as she wants. Learning very early that she likes to get a change of scenery, I started taking her to Panera to get a muffin. This soon became a habit that she latched on to with ease. She likes getting out of the house. She likes the muffin, and the bonus is the social activity there. She doesn’t like to stay any one place for long whether she is at home or someplace else. If we get to Panera early, we are likely to get back home for a break before lunch. If the weather is agreeable, she will work outside until I let her know that it is lunch time. I established lunch to match my own preferences. We go anywhere between 11:30 and noon, sometimes slightly later. After lunch, she is likely to go back outside. She used to stay out as long as three to four hours. Nowadays, she is not outside longer than an hour and a half to two hours. That often leaves a span of time during which she likes to leave the house again. At first, I took her back to Panera. More recently, I have sometimes taken her to Barnes & Noble. We go to dinner between 5:30 and 6:00 and are usually back home between 6:45 and 7:15. Then comes the most relaxing part of the day for both of us. We go back to our bedroom. She usually gets ready for bed and takes a seat in her chair and works on her iPad. I sit in mine and watch the PBS Newshour that I record every night. Anywhere between 8:00 and 8:45, Kate is ready to get in bed. Sometimes she continues to work on her iPad in bed. Other times, she puts it up and goes to sleep.

My point is that this routine seems to minimize and relieve the boredom she feels if she spends too long at one task. That is especially true because there are so few things she is able to do on her own. I can easily understand. If I could only work on my iPad and go outside to pull leaves off the shrubs, I would be bored as well. It is remarkable to me that she is able to spend so much time on her iPad. It is only possible because we are changing locations throughout the day.

This brings me to comment about travel. At home the schedule takes care of itself. She gets along pretty well. When she is bored, we move to something else. That seems to work very well. When we are traveling to visit family, the routine is different. Often there is no set routine because our time is viewed as an opportunity to simply enjoy time together. The problem for her is that she is unable to fully participate in most of our group activities that involve conversation, games, or things like watching a football game.

This brings me to this afternoon. We didn’t arrive at Kevin’s house this morning until it was getting to be time for lunch. All of us went out for a nice lunch and came back to the house. I was hoping that Kate would take interest in a game Kevin’s family had learned from Kate’s cousin, Tina. She was never able to become engaged and went into the family room to work on her iPad. After playing the game a while, I went in to check on her. Her look conveyed she wanted to move on. I’ve learned to recognize it at home, at Panera, Barnes & Noble or visiting family on holidays. I decided it would be best for us to leave and took her to Panera. She was just fine. Before we were there an hour, she gave me the same look. I asked if she would like to return to the hotel. She did. We’ve been here about forty-five minutes. A few minutes ago, she closed her iPad and is resting on the sofa. She asked me not to let her go to sleep. We will leave soon for Kevin’s and then go to dinner.

I have heard other caregivers talk about the challenges of traveling with their loved ones. We have been very fortunate to travel as long as we have, but now I see that we are approaching the time when that will be a thing of the past. It is hard on her and demands a lot of me to watch out for her. It is also very confusing for her. She still is not sure where we are. Today at Kevin’s, she pulled away for a moment and asked, “Where do they live?” I told her once again that they live in Lubbock. Tonight at their home, she asked, “Who lives in this house?” I told her that Kevin and Rachel live there. As she was getting ready to turn out the light and go to bed, she asked, “Where is this?” I asked if she meant the city. She said yes. I told her again that it is Lubbock, but that she would not have to worry about where she was tomorrow when we were back home.

 

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Lost, But Only Momentarily

Kate and I are still in the breakfast area of the hotel though I expect to leave for Panera shortly. A few minutes ago, she asked the location of the restrooms. I told her and pointed in the direction of the hallway off the dining area. I watched as she walked away and noticed that she followed my directions and went down the hallway. I didn’t watch to see if she had any trouble finding the restroom. This was a replay of what happened yesterday. I watched for her to return and found that she had walked by the dining area into the main part of the lobby and was circling back. As she walked, she looked from right to left and back again trying to find me. Finally, our eyes met and she walked over. I said, “You found me.” She proudly acknowledged that she had. Then she smiled and said, “Well, I made one wrong turn.” Even though I was watching for her, I wasn’t worried about her. This is a fairly small area. I knew she would find me. Of course, by keeping an eye out, I could have quickly jumped in to steer her back on course.

This is a frequent occurrence. She never seems to be concerned. She just calmly looks around. In the event that she does not see me, she takes a seat and waits for me to find her. I have done so a number of times, sometimes with help. Recently, a server at a restaurant where we were dining approached my table and asked if my wife was with me. When I said yes, he told me she was sitting in a booth in the next room. I walked over where she was calmly waiting for me and brought her back to our table.

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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.