Bizarre Case of Imagining Things

At lunch today, Kate asked me something about “a guy who wanted to make her naked.” I had no idea what she was talking about and said so. She looked frustrated with me and indicated I must have remembered. She went on to say that she had been in the restroom, and there was a man and a woman. The man wanted to disrobe her and walk her around the restaurant and parade her outside. She said she knew that I would not let that happen. I assured her that was the case.

A moment later, she asked me the name of our server. I told her it was Sandra. Then I said that reminded me of someone who was in her bridge club years ago. I could see that she didn’t recall and went on to tell her the names of each of the members and their spouses. She said, “Where was this?” I told her it was right here in Knoxville. I noted that two other members of the club as well as the two of us are the only remaining living members. She said, “Where was this? In North Carolina?” It was clear that she had little or no memory of the bridge club of which she had been a member for more than twenty years.
Then she asked me our daughter, Jesse’s, middle name. I told her. She asked what her last name is. She followed that by asking her husband’s name. After I mentioned the twins, she asked their names. I said something about having a son in Texas, and she asked his name.

These are not names that are lost forever. They come and go in her memory, but they are signs that the names will be forgotten sometime in the future. When I encounter moments like these, I am amazed that she functions as well as she does.

More Good Times With Friends

Today has been a good one for social engagement. Angie and Tom Robinson were in town for lunch and a pleasant afternoon of conversation. We had lunch at Carla’s. They had liked it year or two ago when we had first taken them there. I am glad we went. It offered them a glimpse of why I say that eating out is a social occasion for us. We go to Carla’s frequently and know several of the restaurant staff. One of those is the manager, who stopped by our table to say hello. She ended up giving us complementary desserts. As we were about to leave, the newly retired CEO of United Way took a table next to us. We introduced him to the Robinsons, and we spoke briefly before leaving. After that we came back to the house for more conversation.

It had been a good visit. Kate participated more than she usually does. She was more animated than normal, sometimes more assertive as well. I’ll have to talk with Tom about his impressions, but I felt she handled herself well. She is changing, but she does far better in social situations than I would expect knowing how little memory she has. At one point, she asked Tom about Bruce, a mutual TCU friend and one of my former roommates. I was surprised she recalled his name. As usual, I knew that some of the things she said were figments of her imagination. They aren’t, however, the kind of things that provide an immediate alert to others that she is confused.

After they left, I told her how well I thought the visit had gone. She agreed. Then she said, “Who are they?” After I reminded her, she said, “Oh, yes, from TCU.” Part of our discussion this afternoon was about our days at TCU. I was glad to see that she still had not totally forgotten that connection. Then she asked, “Who are they again?”

She is having significantly greater trouble recalling names in the past couple of weeks. Today, she asked, “What is your name?” I find it hard to believe that she has forgotten, but that is what it sounded like when she asked the question. After I told her my name, I asked, “Now what is your daughter’s name?” She couldn’t answer. I said, “Jesse.” Then she immediately gave me Jesse’s middle name. Clearly, the first name triggered the middle name even though it is one we do not use.

The changes in her memory make me think that making another trip to Texas in the spring and a trip to Asheville for our anniversary may not happen. If that is so, there are likely to be other changes on the horizon, and not as distant as I would like.

Memory is fading, but she can still be light-hearted.

At Panera this morning, Kate asked me the name of a young man who works there. I told her. Then she asked again. I told her again. A minute passed. She looked up at me and said his name. I said, “You got it.” She smiled and said, “Ask me again in five minutes.” She knows she is not likely to remember.

We got our haircut this afternoon. Kate went first. When Dawn was cutting my hair, she commented that Kate had mentioned the move to Texas again. I told her that she had been telling other people the same thing. Fortunately, she says just the right thing when people ask when we are moving. She says, “We haven’t set a time yet. We’re not rushing.”

As we walked away, Kate asked, “What’s her name?” When we got in the car, she asked, “Where are we?” I asked if she meant the city. She said, “Yes.” I told her. It is such an interesting contrast, appearing to get along so well and then forgetting people and places you might think she has the greatest likelihood of remembering.

More Rehearsing of Names

Not long after we sat down for lunch yesterday, Kate said, “Tell me my father’s name.” I gave her his full name. The she asked for her mother’s name. Once again, I gave her the full name. Unlike the other day, I believe she really knew the answers and also believed I knew them. I think she was just leading into a way to talk about the names of people and places she is beginning to forget. I asked her to tell me our daughter’s name. She got it as well as her husband’s name. She stumbled on her boys’ names, but when I said Ron, she immediately said Randy. We did the same with our son’s family. When I told her that Kevin and Rachel have three children, she looked surprised and said, “Three?” I gave her the names of all three.

Following the family part of the name game, she asked, “Where are we right now?” I told her we were at Carla’s. It turned out she wanted to know what city we were in. I said, “We’re in the city where our home is located.”  She said, “Where is that?” I told her and didn’t go any further. Even though I know her memory is fading, I find myself surprised when I come face to face with examples like this. I wish it weren’t so.

Later in the afternoon, we spent some time at Barnes & Noble. Before leaving, she wanted to use the restroom. It is located about 60-70 feet and to the right of where we were sitting. She asked me to tell her where it is. I suggested that I take her. At first, she didn’t want me to. Then she quickly changed her mind. She went ahead of me and I took a seat on a bench directly across from the women’s room 15 feet away. I saw her walking back toward me. She said she couldn’t find it. I showed her the door a few feet behind her. She had walked by it twice without seeing it. These things confirm what I already know, that I need to stay close to her even in places like this where we are a closed space. It would be even worse in a mall or the Atlanta Airport where I lost her for 35 minutes on our recent trip to Texas.

Working Hard to Remember

It would be easy to imagine that a person who is as far along in her journey as Kate would simply let go and drift away into her own world. That is what I imagined my mother did. What I realize now is that a spouse or other caregiver who lives with the person with dementia sees far more than anyone outside the home. As it has become more difficult (impossible) for Kate to remember things, she seems to work harder than she did earlier. If not, harder, she is more open with me about her efforts to recall the names of people and places.

It is common for her to rehearse names of family and friends before each visit. A typical situation would involve my telling her about our upcoming visit during lunch or dinner. She will ask me to tell her the names of the people we will see. That usually means one or two names, sometimes as many as four or five when we are visiting our childrens’ families. The pattern is always the same. She asks for a name. I tell her. She repeats it. Then she asks for the name again. This sequence repeats itself several times. Then we move on until we are in the car or plane to see someone. Sometimes she is able recall the first name but can’t get the last.

There are other times that she is trying to recall names when the two of us are not “in rehearsal.” For example, as we are driving someplace, she will just speak someone’s name. I may be reading too much into these occasions, but it sounds like she is pleased with herself when this happens.

There are also times when I initiate the conversation with, “Here’s a test for you. What is the name of your only granddaughter?” Yesterday on the way to lunch, she surprised me by saying, “I’m going to test you. What is my mother’s first name?” When I told her, she said, “Right” and asked, “What is her middle name?” Then she asked me to tell her her father’s name. I can’t know for sure, but I believe she was not asking to test me at all. Indirectly, she was asking me to remind her of her parents’ names. In a sense, this is a way of covering for not being able to remember. On the other hand, it is also possible that she might really have been playing a game with me. If that is so, I would have another interpretation. I would think she has passed into another stage at which she is not able to grasp my own capability to remember. While that may be, I haven’t noticed any other signs that would suggest this is so.

Last night at dinner, my dad’s former writing teacher was sitting in the booth behind us. She was with another woman who had been in the writing class. The third woman had been in his Sunday school class. We chatted a few minutes with them before taking our seats. Immediately, she whispered, “Who is she?” I knew she meant the writing teacher. I told her. We went through this several times. Then she did the same thing with the restaurant. She never got them, but she was trying so hard.

This experience also makes me think about her decision not to tell others, even our children, about her diagnosis. She has never wanted to be treated like someone with Alzheimer’s. She wanted, and still wants, to be treated just like anyone else. It’s just so hard when you can’t remember who people are or even where you are.

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.

I’m surprised.

We are back at Panera for the second time today. We spent about two hours here this morning. We were back home by noon. It is a much warmer day today, so Kate wanted to work outside. She came in after a couple of hours and took a shower. Then she was ready to leave again. We arrived here about fifteen minutes ago and had a conversation with a medical student whom we had met before Christmas when he was here studying for his exams. When he left, Kate looked at me and asked, “What’s the name of this place?” I told her. Then she said, “I don’t know why I can’t remember that.” Then she tried to repeat but asked me to tell her the name again. She was having a hard time pronouncing it as though this were the first time she had ever heard the word. She was trying to pronounce it with a “T” rather than a “P.” I corrected her and she practiced saying it several times.

In some ways, I feel I shouldn’t be surprised. After all, she forgets most things. On the other hand, Panera is such a large part of our lives that it seems like a name she would hold on to for a while longer.

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.

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.

 

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.