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Post-Trip Symptoms

Kate was very tired when she returned home on Monday. She was in bed with eyes closed before 7:30. Yesterday she was up at 7:30 and ready for Panera shortly after 8:30. She wanted to come back home after an hour and got back in the bed where she remained another hour before wanting to go back to Panera. During the balance of the day she got along normally. She was in bed about her usual time last night, around 8:30. This morning she slept until after 10:00. We were so late getting to Panera that I ordered lunch along with Kate’s usual muffin.

This was the day for the sitter, so I made sure that we were back home before her arrival just before 1:00. I went to the Y and then made a stop by the grocery before meeting Mark Harrington for coffee. We talked about my blog that I intend to launch this Sunday, the seventh anniversary of Kate’s diagnosis.

When I got home and the sitter had left, Kate was ready to leave the house. She picked up her iPad and got her coat. She didn’t say anything. I know the signs. They signal she wants/expects us to leave for someplace, usually Panera. This has become something of a habit on the days when the sitter comes. I am sure that is because a good bit of her time with the sitter is spent at the house, especially right now when the weather is quite cold. My presence is her sign that she can go back to Panera. Often it is only 30-45 minutes before we go to dinner. That was the case today.

Until this point, I felt everything was going well. At dinner, however, she asked me where we were. I thought she meant the restaurant and told her. She gave me a look that told me that wasn’t it. I said, “We’re in Knoxville.” To the best of my knowledge she has only asked that question when we were traveling in another city; so I was surprised. During the meal, she asked me the name of the restaurant and the owners of the restaurant. She never remembers these, so I wasn’t surprised at that. As we were finishing our meal, she asked me the way we would walk out of the restaurant. I pointed to the front door. In another minute, she asked me where we were. Once again, I told her we were in Knoxville. After paying the check, she again asked me where we would leave the restaurant. I pointed to the front door and got up. I said, “Follow me. I’ll show you.”

When we got home, she got ready for bed, put up her iPad and got under the covers about 7:30. I am wondering if these things are in any way caused by our travel over the weekend, or if this is just another sign of her decline that would have occurred anyway. Regardless of the specific cause, for me it is a sign of change and in a direction that I don’t like. It tells me that 2018 is going to be a different kind of year.

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Memory, Confusion, and Dependence

Earlier today I mentioned an experience at lunch when she didn’t recall that her cousin Chester had died and that we had attended his funeral two days ago. That is a rather dramatic experience that she would have recalled several years ago. I am still somewhat surprised that it didn’t ring a bell at lunch.

Before going to dinner this evening, I told her again about the pictures I had sent her Ken and Virginia as well as our son. She said, “You should also send them to Chester.” I told her that he had died last week. She said, “We were just with him.” I assume she was referring to this past weekend and said, “We were there for his funeral service.” She hadn’t remembered. This is clearly a change from several months ago. I have been noticing the change and commenting on it, but it is still somewhat surprising when she says things like this.

Her increasing loss of short-term memory is not the only change. She seems more reflective. She talks more about the past, her family, our relationship, and about me specifically. She expresses more appreciation for the things I do for her. She is also much more accepting of my suggestions regarding her clothes or whether she can work outside and, if so, where and with the clippers.

In general, I would say there is a striking change in her dependence, acceptance of her dependence, on me. She accepts  my help more readily and even asks for it. That is especially true with respect to her clothes. For example, for quite some time, she has put on clothes that are backwards or inside-out. That seems to be more of a problem now than in the past. Today,  she has asked me to help her with her coat when she couldn’t easily put it on. Tonight, she started to put on her night gown. She said, “Wait a minute, I might need your help with this.” She was holding it up and trying to decide which was the top and which was the bottom of the gown as well as the front and back. She started getting frustrated and asked me to do it. I finally put my hand through each of the sleeves and grabbed her hands and guided them through. I can see that this is going to be worse very soon. She got into bed and then said, “I can’t live without you,” something she has said many times along the way. Right now, it takes on a more serious meaning.

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Coordination Problems and Confusion

For someone like me having a schedule is helpful in getting things done. Since our return from Texas, Kate has been getting up later. That has meant getting to Panera has been later. That hasn’t presented a problem since I haven’t had any meetings or other obligations during the holidays. Today is different. I go back to Rotary. That means the sitter comes at noon instead of 1:00.
Today is different in another way. Kate got up earlier, probably related to the fact that she went to bed shortly after 7:00 last night. That influenced our morning schedule. We got to Panera earlier, and she wanted to come home before lunch. I generally try to get her to lunch at 11:00 so that we can be back for the sitter in plenty of time. When I went to our bedroom at 11:00, she was resting in bed. I asked if she would like a sandwich. She said she would rather stay in bed. I decided to let her remain in bed and that the sitter could take her to lunch.

A little after 11:15, she came into the kitchen with her coat on and iPad under her arm. She was ready to go back to Panera. Knowing that we might have difficulty getting back home in time for the sitter, I called the agency and asked the sitter to meet us at Panera, something I may establish as a regular routine. That would be a better way of handling the situation rather than rushing Kate.

Before leaving the house, she took a can of Dr. Pepper out of the refrigerator to take with her. She is particular about the mixture of Dr. Pepper she often gets out of the machine at Panera. When we got out of the car, I took the can of Dr. Pepper. When we got inside, I offered to get some ice. When I came back to the table, I pulled the can of Dr. Pepper out of my pocket and poured it into her cup. She said, “Aren’t you smart.” When I asked why, she indicated it was because I brought the Dr. Pepper for her. She had forgotten that it was she who had actually thought to bring it.

Then I left to go to the counter where I ordered her sandwich. As I returned to the table, I noticed Kate at the drink machine. She had emptied the Dr. Pepper, replaced the ice, and was getting another drink from the machine. When I asked about her Dr. Pepper, she had no recollection of having had one. I don’t know why she poured it out. I just let it go. She took a sip out of her drink. She didn’t like it and gave it to me to taste. She had gotten carbonated water. I went back to the machine and got her an Arnold Palmer. She is now happily working on her iPad while eating her lunch. She seems happy. So am I.

The major learning in this episode for me is that I should be prepared to let the sitter meet us here every week unless there are other reasons for doing otherwise. I can’t be too rigid with my own desire to stick to a regular schedule. By letting go, I will save myself a little stress.

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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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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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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.

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An Experience With Ladies’ Intimate Apparel

Kate and I are now at Barnes & Noble where we are awaiting a call from Jan and Scott Greeley, our long-time friends who live in Nashville. They are in town for the memorial service for a friend. We are going to meet them for lunch after the service. Since my last post, we dropped by the bank to get some cash and came over to Belk’s to buy Kate a new bra. For almost the entire time since her diagnosis, we have faced a number of issues involving clothing. Some of those have been partially resolved, but there are always new ones. Here is one that occurred about 45 minutes ago.

I should start by saying that my knowledge of women’s apparel has never been good. That is especially true when it comes to bras. Today was not my first experience shopping for them, but it was the most challenging one. A writer for a situation comedy could have a field day describing what transpired. It could make for quite a funny episode. I, on the other hand, didn’t take it that way at all. For me, it represents one more sign of how far Kate is on this journey. Thus, I see more sadness than humor.

Today, perhaps all week, Belk is having a sale on all their bras. They are fully stocked for the occasion. In some ways that might make it a good opportunity to make a purchase. Instead, I found it overwhelming. Despite the store’s best efforts to have things in order, I could not identify a consistent pattern to the way they were arranged. I know it must have been overwhelming for Kate. She didn’t even make an effort to look for anything. She trusted and depended on me for that.

Finally, I picked out what I thought was the correct size. I have done this at least twice before, once at Belk’s and once through Amazon. It turns out that the size I bought last time must not be the right one now. Kate tried on at least five different ones without finding the right fit. It took her quite a while to try them on. When she came out after trying the first two, she couldn’t tell me much except “they didn’t fit.” Then I went back for a couple more with the same result. Finally, I suggested that I go into the fitting room with her. She thought that was a good thing. After looking at the way this fit, I felt it was still too tight. I suggested we try to get something through Amazon. It would be easier than picking through all the items hanging on the racks.

I should also mention that each time Kate came out of the fitting room she had put on the two tops she was wearing. The problem was that she kept putting them on backwards. One time she left one of them in the fitting room. She is getting so very confused, and it is very sad to see. These are the kinds of things that make me pessimistic about the upcoming year.

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Needing Help With Clothes

For the second day in a row, Kate came into the kitchen and asked, “What can I wear?” I asked if she would like me to pick out something for her. She said yes. It is obvious we are going through a transition. It doesn’t seem that long ago that she didn’t want me to help with the selection of clothes at all. She actually resented it. Over the years, she has accepted more involvement from me. I have attempted to respect her desire for independence in this area. I have tended to get involved only when we were going somewhere that would call for something a little nicer than her everyday clothes. I have also asked her to change clothes when they had gotten too dirty from working outside. That is something about which I have become much more accepting than in the past.

I feel her struggle for independence has been a good thing. It saddens me to see her turn over her clothes to me. That is one of the last things she has been able to do almost completely on her own. The primary way in which I try to help her is by picking up clothes that have been left in various places around the house and putting them in the laundry or back in the closet if they are clean. I also try to keep her clothes somewhat organized. I have never taken all her clothes out of the closet and started over. What I have done is to move her clothes so that the ones she wears regularly are all at the front of the closet, pants on the right side and tops on the left. I also arrange the clothes by color. I am not sure that it helps her, but it helps me when putting her clothes up or getting clothes out for her.

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More Signs of Confusion

Before we went to Casa Bella last night, Kate started to put on an outfit that I thought was less appropriate than she should wear. She told me to pick out something. I did and put the pants and top on the bed in her room while she was standing there. I left the room to get myself dressed. Shortly she came into our bedroom wearing the same thing she had been wearing. I told her she didn’t put on the things I picked out. She gave me a puzzled look and asked where they were. I told her I had put them on the bed. We walked back to her room. I found the top on a hanger in her closet. She had thrown the pants across a chair. It was obvious she had no recollection of my having picked these out for her. I stayed with her while she took off the top she was wearing. I told her she didn’t need to change her pants although they were more casual than the ones I had picked out. Again, I went back to get ready. She came into the bedroom where I was getting ready. Once again, she was wearing the top she had been wearing to start with. I went with her to her bedroom and helped her into the top I had picked out.

This morning she was a little disoriented. Shortly after 8:30, I went to the bedroom to see if she was up. She was walking back to our bedroom. She asked, “What can I wear?” I asked her if she would like me to find something for her. She said, “Oh, yes.” There was no effort to express her independence. I walked to her room and picked out something from her closet where there were many options she could have chosen. When I returned to our bedroom with her clothes, she thanked me and put them on.

On a related note, I have noticed that she is having increasing trouble putting on her clothes. For quite a long time she has frequently put on her tops and pants backwards or inside out. This tendency is increasing. Last night as we got ready to leave for Casa Bella, she had great difficulty getting her top on correctly.

She has had similar problems today with two different coats. Late this afternoon, we went to Panera. The sitter had taken her there earlier, but she was eager to get out of the house. We had another hour before going to dinner; so back to Panera we went. Since it has been cold and rainy today, I gave her a coat to wear. I watched as she struggled to get it on. She wanted to do it without my help. She ended up getting in the car with her right arm in the right sleeve but couldn’t find the sleeve for the left arm. Before we left Panera, she started to try to put on her coat and then asked me to help her.

Because it has been such a nasty day I was concerned about Kate’s being occupied while the sitter was with her. Working outside was impossible. That only left the iPad to keep her busy. As far as I could tell, that did not turn out to be a problem. Neither Kate nor the sitter said anything.

As she has been doing, Kate warmly greeted the sitter. She also thanked her when she left. After she was gone, Kate said something about how sharp she is. I said, “It must be nice to have somebody here with you.” She nodded agreement and then said, “It really is. More than I thought at first.” I still don’t know if she realizes she has two different sitters, but she has never mentioned anything that suggests she does. She seems equally happy with each of them.

We reached a significant milestone with the sitters this week. It marks the end of the first ninety days since they started coming. The importance of this is that our long-term care insurance doesn’t start reimbursing us until after that period. If everything goes according to plan, I will need to submit records of all the payments made through Tuesday of this week. After they have accepted them, they will reimburse us for all future expenses up to a daily maximum set by our policy (12.5 hours). At the moment, I can’t begin to estimate how long it will be before we hit that maximum. I hope it is a long time.