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.

A Humorous Moment

Before coming to Panera, I noticed that Kate had put on her pants inside-out. I mentioned it to he rand  then went to get her iPad to take with us. When I returned to the kitchen, she had already gone to the car. After we had been at Panera almost an hour, she got up, and smiled, and said, “I think I should put my pants on the right way.” That was the first time that I had noticed she hadn’t changed at the house. When she hadn’t returned to the table in the time I expected, I got up to look for her. It is not unusual for her to forget where we are and take a seat at another table until I find her. I didn’t see her and turned around to return to our table. When I did, I saw her walking toward me. I said, “I guess you got your pants taken care of.” She chuckled and said, “Why do you think I went to the restroom?” This is one of those light-hearted moments we have frequently even though it could be frustrating to Kate and sad for me. It is one of the ways we both cope.

That reminds me of a phone call I received from a friend yesterday. I have known him in connection with our volunteer service for many years. We first met at Junior Achievement when we served on its board. Later, we worked together at United Way and then the foundation of the UT Medical Center. His wife was an Alzheimer’s patient who died a year ago. He calls once in a while to check on me. This time he let me know that he is going to get married in May.

As we talked, I filled him in on our lives. I said something about Kate’s asking me things (for example, names of family members or close friends) that she would not be as likely to ask other people. It was interesting to hear his response. He knew exactly what I was talking about and the feeling you get when that happens. We both feel that it comes from the trust she feels because of the closeness of our relationship. In that respect, he and I both acknowledged a sense of gratitude and closeness that we feel when these things happen.

For me, it is especially interesting in that Kate still does not talk about her Alzheimer’s in any direct way. She never mentions it anymore, but she is not at all guarded or hesitant to say many things that are obviously symptoms of the disease. I often wonder if she makes any connection between her symptoms and her diagnosis. I really think she doesn’t. I would like to know, but I feel it doesn’t serve any good purpose for me to inquire. She is happy. I want her to stay that way.

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.

Kate’s Obviously Having Some Imaginary Conversations

In my earlier post I noted that it appeared that Kate thought she and I had had a prior conversation about the Wisconsin professor for whom she worked while I was a grad student. That was not a unique occurrence; she had another such experience as we drove to dinner tonight. She said, “I’ve always felt comfortable being with you.” It was her tone of voice, not the words themselves, that made believe she was responding to something I had said although I hadn’t said a word. I looked at her but didn’t say anything. I was just puzzled by her comment. Then she said, “I always know that when I am with you that you won’t let anything happen to me.” I agreed.

Both her afternoon and evening comments made me rethink some earlier comments she had made at home. It is as though she is doing a lot of reflecting and/or reminiscing. I often wonder if and what she is thinking during her long moments of silence. Today’s experiences may provide a brief glimpse. I wish I could know and understand more.

My Doctor’s Visit

Yesterday I had a routine appointment with my doctor. Since this was a day when I wasn’t covered with a sitter, I took Kate along with me. This was the second time I have done so. As with other things lately, she didn’t ask why I was taking her. I simply told her I didn’t want to leave her at home.

It was an interesting visit. For the first time, I was given a memory test. This was something initiated by Medicare. I can easily understand the need for it, but I was taken aback by being asked to take it. I had taken Kate into the examination room with me and was curious to see how she might respond. She heard the nurse explain the procedure, but she continued working the puzzle on her iPad. This was a much abbreviated test compared to the ones Kate has taken. It involved two simple questions that I have heard quite a few times. First, she gave me three words to remember. After she said them, she asked me to repeat them to her. Then she asked me to draw the face of a clock followed by drawing where the hands would be for 11:10. That was it. Before she left the room, she asked me to tell her the three words again. I am happy to report that I passed with flying colors.

When the doctor came in, I commented on my taking the test. I told him I could understand the reason for it but felt it was a little premature in my case. Then he launched into quite a lengthy response. He pointed out how easy it is for someone to cover so as to keep others from recognizing their memory problems. Once again, I was looking to see how Kate was responding. I saw her smile, but she continued with her iPad.

That led to doctor to talk about words for various things in room, for example, his lab coat, the lapel on his coat, a pin on his lapel, etc. At one point, he said something that involved English grammar. That is when Kate spoke up and was perfectly correct about her observation. It was an interesting example of what the psychologist had told us during Kate’s testing for Alzheimer’s. She said Kate’s greatest weaknesses would be the things she would lose first, and she would retain her greatest strengths the longest. I would say the psychologist was right on target, at least for Kate.

I had told my doctor about Kate’s diagnosis long ago and have mentioned it to him on subsequent occasions; however, I still wondered if he remembered. He spoke very naturally about Alzheimer’s and it symptoms. It was something he dwelt on, but it was directly related to the memory test I had taken as well as my own remarks about it. Kate never said anything to suggest she even heard any of this. She did, however, pick on the grammatical issue. It reminds me of something she says to me occasionally when I am surprised at something she remembers: “Don’t count me out yet.”

Working So Hard To Remember

Kate and I finished a very nice lunch and had just gotten in the car when she asked, “Where are we?” I asked if she meant the city. She said yes. I told her we were in Knoxville. She said, “So we are still at home.” This is not the first such experience. I know I have reported on occurrences like this when we are traveling. I can’t recall if she has ever asked that when we are here at home. This was the first of several things she said on the way home.

Not long after we left the restaurant and out of the blue, she said, “Katherine Rose,” her mother’s first and middle names. I said, “That’s right.” Then she said, “Katherine Rose Benson,” her mother’s maiden name. A few minutes later, she said, “Fort Benning.” Then she said, “That’s where my daddy was based.” Once again, I told her she was right. She went on to say, “Sometimes the names won’t come to me, but if I think a minute, they do.”

I am not sure what was prompting this, but I am confident that she recognizes her difficulty remembering things that she used to know so well. I also know that she checks the names of people and places with me quite a bit, not just when we are about to see someone. I suspect that she spends some time rehearsing, trying to cement the names in her brain. She does not appear to sense that her AD is causing her memory problems. I am certain that is true for other things that are not directly related to her memory. This represents a distinctly different stage of her illness. She knows that she has AD, but she seems not to know what that means or the symptoms associated with it. At times, I feel like telling her, but I always come back to what I think is best for her. She is happy. It serves no purpose to call attention to her illness at this point. I don’t anticipate changing my mind on this decision.

Sign Language Can Be Confusing

Kate continues to use hand signals to ask some of her questions. Most of the time I understand what she is asking, but not always. Take this morning, for example. We were waiting at a stop light on the way to Panera when she looked at me and pointed in the direction of her cup sitting in the holder of the console. She also had the lid of the cup in her hand. I thought she was asking whether or not to take her cup into Panera, but that is something she is more likely to ask when we arrive at another restaurant. She gave me a disconcerted (irritated) look, and I told her I didn’t know what she wanted. That prompted another look. Then I realized that what she wanted was a napkin. I try to keep them in the car to wipe the saliva from her mouth. (She still doesn’t swallow her saliva.) When I realized that was what she wanted, I opened the console and gave her a napkin. Then I said, “I thought you wanted something to do with your cup.” She said, “Nice try, but I’m not going to let you get away with that.” I said, “Well, I usually do a pretty good job.” She smiled and said, “Yes, you do.”

A Nice Thanksgiving

We had a very pleasant Thanksgiving with Jesse and her family. Once again, we ate well. I suspect that is true for most of you reading this message. It was a relaxing day. The four adults were awake and downstairs before 8:30. The boys didn’t come down until a good bit later. Kate and I were mostly observers in the day’s activities. Jesse and Greg worked off and on the entire day. Jesse fixed everyone’s favorites. That meant mac ‘n cheese for Randy, bow tie pasta for Ron, and asparagus casserole for Kate and Jesse. The only sad part for me is that Kate no longer remembers that the casserole was a holiday dish that her mother made when she was growing up. She simply ate it without comment, and in the midst of all the activity, I forgot to tell her how much she had always enjoyed it. She loves reminiscing about her mother and would have liked thinking about other holiday favorites that she made for her family.

Like many families, we had the football games on all afternoon and into the evening. We didn’t sit down and watch any of them, but we kept up on the scores and periodically sat in front of the TV during critical portions of the games. After dinner last night, we watched Christmas with the Kranks. I hadn’t seen it before. It was one that Jesse’s family had seen before and loved. It was fun to watch as a family. Jesse and I were the primary viewers. Kate worked jigsaw puzzles on her iPad the entire time. She got in a lot of that yesterday. Greg had a football game on his the bedroom. Ron went back and forth from the movie to the game, and Randy was playing games on his phone. Despite the fact that we were not all watching the movie intensely, I felt it was a nice family time that allowed each person to pursue his personal interests while still being together.

As I have noted on other trips, large blocks of time can be a problem for Kate. She doesn’t like to stay in one place for an extended period of time. That is an issue whether at home or on the road; however, it is easier to change locations at home. For example, we can run to Panera or Barnes & Noble. She can work in the yard. We are always moving from one place to another. This desire to change locations is compounded when we travel because she is also confused about where we are and when we are going home. Early in the day yesterday, she asked me when we are going home. I told her we were going home “tomorrow.”

During the middle of the day we played Uno with Jesse and the boys. We had a good time and had a few laughs as well. I didn’t grow up playing lots of games at home, but I have come to recognize how good they are at facilitating group engagement. Everybody has fun most of the time except when someone loses too much. Playing with Kate adds a special dimension to games. She can’t remember the rules, and when I would try to help her, she would resent being helped. She had a real sense that we didn’t believe she could do anything right. At one point, we all knew that she had a “wild card” in her hand with a good opportunity to use it. We kept telling her what a wild card is and when to use it, but she never recognized that she had one in her hand. It was only one of three cards. She simply didn’t perceive it. Despite this issue, the game was a success.

Sometime during the night, Kate screamed, “Help!” I asked what was wrong. She said something about “her.” I asked, “Who is she?” She said, “My helper.” I had been thinking things were going so well with the sitter. Suddenly, I wondered if she had been afraid of the sitter. I asked if she had done something to make her afraid. She said, “No.” The she told me the sitter was with her. There was apparently something else that had scared both of them. I asked what had happened. She said, “I don’t know.” She mumbled a bit. Then for the next few minutes, she periodically said something about her (the sitter) as though she were concerned about her safety. I told her everything was all right, that it was just a dream. She said, “I hope so. I would feel better.”

Dreams like this are not typical for Kate, but she does occasionally have them. Fortunately, most of them involve her days in the classroom. She is always giving instructions to her students in a very kind way.

It is now 9:30 a.m. Kate has not yet come downstairs, and I want to leave in the next 30-45 minutes. I think I will go upstairs to check on her. Jesse has gone to work. The boys are still sleeping. It’s been another good holiday with family.

One Reason I Say We Have Been Fortunate

As we drove up to our house from Panera, Kate asked if she could use her clippers. I said, “Absolutely.” She gave me the surprised look she always gives when I say this even though I have never said no.  Then she asked if I thought she would need a jacket. I told her not the one she had on but another one I would get for her. (The one she was wearing was a new one I had gotten for her last week. I didn’t want it to get messed up outside.) Then she asked me where she should start, in the front of the house or in the back. I usually say, “You can start wherever you like.” Then she will make a suggestion, and I say, “That would be fine.” I get a kick out of this question because she almost always asks it, but she never remembers what she has decided and simply starts wherever she feels like it when she goes out.

She came inside for a few minutes and then walked in the kitchen to go outside. I helped her with her coat. She asked where the clippers were. I told her they were on the top shelf of a shelving unit in the garage. She said, “I’m going to change my shoes” as if asking my permission. I told her that would be a good idea. (She has two pair of gardening shoes that, surprisingly, she has had for years without losing them.) As she was putting them on, she asked once again, “Where are my clippers?” She was standing in front of the shelving unit with a variety of gardening tools. I told her “on the top shelf.” She looked and finally saw them. Then she said, “You mean right there in front of me?” I smiled and said, “I didn’t say that.” She gave me a big grin and said, “But you were thinking it.”

During any given day, we have a number of such interactions. I work very hard to reinforce this kind of behavior, but I also believe that, by chance, our personalities just work together well to minimize conflict. I should add that this is more indicative of our relationship now than at earlier stages of her AD. I also believe this is something than could change as the disease progresses. There is much that we can’t control. Once again, I say we have been fortunate. I know that many others have a much more difficult time. I feel for them as I give thanks for our own experience.

Dropping Her Guard

Over the weekend, Kate and I went to see the movie, Jane, about the life of Jane Goodall. We were both amazed at the way the chimps in the wild became comfortable with Goodall after they were in close proximity for a good while. Some of this was fostered by Goodall herself by providing a supply of bananas that required the chimps to come closer and closer. We observed something similar on a PBS special on Nature recently. A photographer followed a cheetah and her cubs for a period of about two years. The mother cheetah and her cubs became so accustomed to the photographer that he was ultimately able to pet her and put a collar with a GPS device around her neck.

With these things in mind, I am noting that Kate is also showing more signs of dropping her guard with me. I feel sure something similar will occur with others. In Kate’s case compared to the wild animals mentioned above, she is influenced not only by having been with me a long time. I believe this change is also a function of the disease. It is much like an innocent child who doesn’t realize that what she says or does will be interpreted differently from the way she had wanted or intended. Let me give you an example of the kinds of things I am thinking about.

As we left the restaurant after lunch today, Kate heard a news item about a politician getting caught in lie. She didn’t understand and asked me to explain, a very common occurrence. That itself is a small example. In this case, after I gave her an explanation, she said, “You’re gonna have to explain this to me later.” Her words and they way they were expressed clearly showed that she simply didn’t understand, and it was not something that was very difficult. It would not surprise me if she had done the same thing if she had been with someone else.

Another example occurred after we were home. She changed her top to work in the yard. After buttoning her shirt, I heard her laugh. When I looked at her I could see that the right and left sides of the shirt did not meet as they should. I said, “You got a button out of place.” She said, “Two buttons.” She had been able to laugh at herself for doing this. Unlike the frustration she expressed in earlier stages, she was now able to look t what she had done with a touch of amusement.

She was struggling a little to get her shirt buttoned correctly; so I helped. She accepted my help without any problem. It took me a moment to get the two sides of the shirt as they should be. I said, “This can be tricky.” She said, “It really can be.” This exchange was done very naturally without feeling that this was a symptom of her AD. Over the past year I have more of this kind of behavior. It makes me think of what many people say about someone with dementia. “At least, she doesn’t know.” I can see we are moving in that direction. I also think her receptivity to the sitters, especially letting them take her to Panera, is another indication of this change.

Apart from these things, I see more and more little things that I have seen in the past. The difference is that now so many things are happening even in a single day. Several things come to mind. The weather has cooled in the past week, and I have given her an old jacket of my dad’s to use when she is working outside. It is a good warm jacket with one problem. It has a warm liner that we can take out. The problem is that each time she takes it off, the lining in the sleeves comes out. This leads to much confusion when she puts it on again.

She likes to use clippers when she is working with her shrubs, but he keeps losing them. Long again, I might buy fewer than six or eight pair over a six-month period. A few days ago, I bought her three new pair. She has already lost two of them, one the first time out, the other the second time. Earlier today, I looked around the shrubbery but didn’t find either one. I did, however, find a pair of sunglasses I bought about six weeks ago. They had been missing for at least a month.

After getting her shirt buttoned, she wanted get something to drink. She went to the refrigerator and poured herself a small glass of apple juice. Then she went outside without drinking it. She also walked by the jacket that I had just gotten out for her.

Fortunately, none of these things represents a serious problem. In the scheme of things they are very small. At this point, I have been able to adapt well enough that they don’t bother me. I am just glad that she seems happy and hope this continues for a long time.