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Meeting our Expectations

In my previous post, I mentioned that the Greeleys were visiting us for the afternoon and that I expected to have another great day. It was a very good visit. We showed them a little bit of our world. Kate was late in getting ready, so we had them meet us at Panera. We chatted briefly before driving to Bluefish Grill for lunch. We introduced them to our friends out there, the hostess, our server, and the manager.

We caught up on their lives as well. Scott had recently returned from a three-week trip to Native American land in Arizona and New Mexico. This was another one of his many trips with students. He is preparing a video of the entire trip for them. He showed us three-quarters of it yesterday. Very impressive and very interesting. While Kate and Jan had a conversation, Scott gave me a fascinating Cliff Notes summary of the trip and culture of the various Indian tribes.

At 5:00, I received a phone call from a former housemate at TCU. I told him he called at a good time and would never guess who was with us. When I told him, Kate responded with great surprise and said, “Scott Greeley? I didn’t recognize you.” I was equally surprised at her reaction. Although I know she can’t remember their names, it never crossed my mind that she would have spent more than five hours with them and not know who they were.” I have to believe it was a momentary lapse. I do know that she usually knows my name, but sometimes she forgets. When I tell her, she often says, “I knew that; it just slipped my mind.” Whatever the reason, it got my attention.

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At Lunch

Shortly after we sat down to lunch, Kate looked across the table at me and said, “I’m sure glad I married you.” She paused for a moment. Then she said, “What’s your name?” I told her, and she asked, “What’s my name?”

As we prepared to leave, our server wished me a Happy Father’s Day. I said, “I get a double this year?” She and Kate looked puzzled. The server said, “What do you mean?” I explained that this year it was not only Father’s Day but is also my birthday. Kate’s expressed surprise. She covered her mouth with her hand. Then she looked at the server and said, “You gotta get me outa this.”

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Another Good Visit with Friends

Tuesday, Kate and I drove to Nashville for a visit with our long-time friends Ann and Jeff Davis. We have had an unusual amount of social contact in the past week. Both of us have enjoyed being with close friends. I wasn’t surprised that this visit was also a good one. Kate was very actively engaged in conversation. That was mostly when she and Ann were talking to each other. It is much harder for her to participate in a conversation with all of us. I suspect part of that is not being able to easily follow what is being said. I also think it’s because we quickly move from one person to another. I know this requires a lot on her part. Despite that, she held her own and enjoyed herself.

Although Kate can carry on a conversation, her memory loss means that she no longer retains many bits of useful information. For example, she loved and admired her mother and talks a lot about her. With her memory loss, she has forgotten most of the specific things about her mother, but retains her feelings and impression of her. Thus, she communicates what a special person her mother was, but the examples she uses are often inaccurate. Of course, these are things that the typical listener would not catch, but I do. This makes me think of fiction writers who have created characters and situations in which they are placed. The facts may be fiction, but they often tell a truth about life. Kate is doing something similar with people and places. It doesn’t tarnish my own satisfaction that she is able to function in a very normal way.

As we drove away, I commented on what a good visit we had. Kate agreed. Then she said, “What is her name again?” I told her, and she said, “And his name?” I told her, and she asked, “Where are we?”

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Our Day in Nashville: Part 1, Lunch with the Robinsons

Yesterday we made a day trip to Nashville to visit friends. We had lunch with the Robinsons. Our friendship goes back to TCU, and we have visited back and forth between Knoxville and Nashville for almost 47 years. Our children were very young, and we carted the various paraphernalia likes cribs, diapers, and snacks for an overnight stay. As we have aged, we’ve made the trips much simpler. We have lunch out and then go back to the house for conversation before going back home for dinner. Yesterday’s visit was simpler than that. We met the Robinsons for lunch and dessert and then went on to visit Kate’s best friend, Ellen, who now lives in a memory care facility.

Given Kate’s recent changes, I feel it especially important for us to be with old friends as much as possible. I was especially pleased that our visit with Tom and Angie went so well. In an email this morning, Tom said they thought Kate was pretty much the same as she has been during other recent visits. I agreed with him. She was an active participant in our conversation as she was at lunch with the Greens the other day. I continue to be encouraged at how well Kate does in these kind of social situations. I am hopeful this ability will remain with her for a good while.

The Robinsons were already there when we walked into the restaurant. Kate hadn’t remembered we were meeting them and said, “What a nice surprise.” Of course, I should have reminded her as we walked into the restaurant. This is one of those times I had talked about it a number of times including in the car. It just slipped my mind to remind her just before we saw them. It’s a good illustration of the fact that I can often treat her as though she can remember. She is so normal in other respects that I just forget.

I received an email this morning from my former TCU roommate, Bruce Morton. He and Tom and I send multiple emails to one another daily. He asked if Kate remembered the Robinsons. I told him that is a good question and that it involved what it means to know someone. There is no question that she has trouble remembering their names. Even after spending almost two hours with them yesterday, she asked me their names when we got in the car to leave. She had done the same thing on the drive to Nashville.

She greeted them exactly the same way she would have done in years past. I am sure, however, that she would not have been able to remember our past visits together, that they have children, where they live, etc. She recognized them as people that she has known before. It’s an emotional connection that remains even though all of the names and facts associated with our relationship have faded away. It is something that I did not understand when she was first diagnosed nor quite a while after that. I am glad to have discovered this. It has extended our ability to get together with friends much longer than I would have predicted 7 ½ years ago.

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At Lunch Yesterday

Kate asked, “What’s my name?” I told her. She didn’t ask any follow up questions. A little while later I mentioned that we would be going out for pizza last night and told her the name of the restaurant. She said, “You’re my brain.” Then she laughed and said, “And, I really mean it.”

These are not just examples of her dependence on me but also recognition of it. In her hour-long conversation with her church friend yesterday, I overheard her telling the friend how much she relies on me. I am always encouraged when I see signs that she can still accurately interpret what is happening around her. I don’t mean to say that her awareness extends to a lot of things, but I take satisfaction in her ability to read the social situations. That’s good.

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How long can she remember? Not long.

Somewhere I read that a person in the later stages of dementia can only remember something for 3 seconds. Based on my experience with Kate, that sounds about right. For example, at Panera this morning, she asked me to tell her my “real” name. I asked if she meant my first name. That was the one she wanted. After I told her, she wanted the middle and last names. I gave them to her and then repeated the first, middle, and last names. Then she said the three names. She started to repeat them again but could only get my first name. She tried again. She could get it, but it was difficult to get it right after saying it once. I’m just glad that she doesn’t appear to be overly concerned about it. I emphasize “overly” because she obviously is concerned or she wouldn’t keep asking my name, our childrens’ names, or the name of the city in which we live. She sometimes apologizes for asking again. I always tell her, “That’s why I’m here. You can ask me as many times as you want.”

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Odds and Ends at the End of the Day

It’s been another good day for us. We didn’t do anything special. In fact, given that Kate slept until almost 11:00 and took a nap from 2:00 to 4:00 this afternoon, we’ve spent less time together than usual. We went to Barnes & Noble when she got up and from there went to dinner and back home for the evening.

At dinner, Kate looked across the table at me and said, “Tell me your name.” I said, “Would you like my full name or my first name?” She said, “The name your parents gave you.” I told her “Richard.” Then she asked my middle name. When I gave her that, she filled in the last name. She then asked me to repeat it twice more.

Leaving the restaurant we had to step down from the curb to our car. I gave her my hand which she accepted. She said, “Thank you for not thinking I am crazy.” I’m not sure what motivated it, but it appeared that she thought it silly that she was taking my hand for what seemed a simple task.

When we got home, we went to the family room where she worked on her iPad. She always likes to have the ceiling fan on but hadn’t turned it on. I was in the other room when she called to me. I went to the family room where she pointed to the ceiling fan. This was one of those times she was asking me something with her hand signals. I chuckled and turned it on. She laughed and said, “You must think I’m silly.”

As she was getting ready for bed, she called to me with a whisper from across the room. When I went to see walked over to see what she wanted, she whispered even more softly, “Are we spending the night and tomorrow night here?” Moments later as she was undressing, she asked the same question again.

She turned out the light and got into bed before 9:30. I was surprised because of all the sleep she got last night and this afternoon. I wonder if this will affect what time she gets up tomorrow.

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A Follow Up on Kate’s Dependence

In addition to the signs of Kate’s dependence I noted yesterday, there are several others I would like to mention. One of those is her telling me on two or three occasions recently, “I want to go wherever you go.” I am not sure but immediately wondered if she might be making reference to the times that I leave her with a sitter. Whatever she meant, it was clear that is looking to me for security.

There are daily variations on “going where you go.” For quite some time, she has wanted me to walk ahead of her when we enter a restaurant or other building because she never knows where we are headed. When we returned home from dinner last night, she said, “I’ll follow you.” That is the second time recently that she has said that. Apparently, she didn’t immediately recognize our home and preferred to depend on me to know where she should go. Recently she asked me to wait for her right outside the restroom in a restaurant. Again, it was a matter of her not knowing how to get back to our table.

Another sign of dependence is the increase in the number of questions she asks. We are having more conversations like one that occurred at dinner last night. She began by asking my brother’s name, something she does occasionally. When I said told her Larry, she asked his last name. After that, she asked what he did for a career. I gave her a more complete answer than usual. She didn’t once tell me to stop or that I was giving her “too much information.” It seemed as though she were very seriously interested and trying understand what I was telling her. She was quiet for a few minutes. The she asked, “Where are we right now?” I said, “Do you mean this restaurant or the city?” She said, “The city.” I told her we were in Knoxville. She said, “So where we live.” I said, “Yes.” Then she asked, “Are we going to live here for the rest of our lives?” This surprised me because she has told so many people that we are moving to Texas. I answered her question by saying, “I’m not sure. I think that will depend on our health. If either of us should have any special health problems, that could lead to a move.” She seemed to accept that without a problem.

When she opens conversations like this, I feel a special closeness to her. Much of that arises from the fact that she doesn’t have anyone else with whom she can talk so personally. When we got into bed last night she was more talkative than usual. This conversation opened with her talking about how fortunate we are with respect to our marriage and our children. That led to her admiration for her mother and how much she had meant to so many people. Then she said, “I can’t even remember her name.” I told her and she said, “I know that. I just couldn’t call it right then.” I said, “Not to worry, I’m always here to help you.” Several years ago, she gave me the nickname “MM” for “My Memory.” I have found that she does not always remember that anymore. That doesn’t surprise me. She is slipping on my real name now. These are touching moments for me. She is so open, so authentic in these conversations. They remind me of what a great responsibility it is to be a caregiver for someone with dementia. They also remind me of how fortunate we are. I know many caregivers have to face far more struggles than we have. I feel for them.

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Memory Problems This Morning

As usual, Kate and I are at Panera this morning. A moment ago, she initiated a brief conversation about names. It began when she looked at me and said, “What is your name?”

I said, “I would tell you, but I think you’re teasing me.”

She started guessing, “Charles. . . David. . .John.”

Then she asked me to tell her. I asked her if she really didn’t remember or was just playing with me. She said she really couldn’t remember.

I said, “Richard.”

She said, “I know that. What’s your last name?”

Richard: “Creighton.”

Kate: “I don’t think I remember my name.”

Richard: “What is it?”

She thought a minute and said, “Kate.” Then she added her middle name.

Kate: “Do we have children?”

Richard: “Yes, we have two wonderful children, a girl and a boy.” Then I proceeded to tell her their names as well as the names of their spouses and children.

Kate: “Well, I really know them. I just couldn’t remember. I’m a little slow this morning.”

The interesting thing is that, aside from this memory lapse, she seems quite sharp this morning. A little earlier, Claude, a man we see frequently when we are here, stopped at our table and visited for a while. During his visit, she teased him about several things. He left for a while. When he returned to get a refill on his coffee, he teased her by saying that she had hurt his feelings earlier. She told him she had lived with me too long and was picking up some of my habits. He said she better smile at him from now on. She did.

A few minutes later, I leaned over to Kate and said, “I love you.”

She said, “I love you too. Of course, I can’t remember your name.”

I said, “The name is not that important.”

She asked, “What is your name?” Then she guessed several names and finally asked me to tell her.

When I told her, I said, “You knew that.”

She said, “Yes, but it just wouldn’t come to me.”

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Whoops!

As I have often said, Kate handles herself well in social situations and has done so since we arrived here in San Angelo. Before she got up yesterday morning, Ken, Virginia, and I talked about how well she is doing. Of course, she slips up occasionally. That occurred last evening when we left our table at the restaurant and moved to an adjoining coffee shop. Ken and I went to the counter to order our dessert while Kate and Virginia selected a table. I should add that we have known Virginia since 1993 when she and Ken got married. Later Virginia told me that Kate said, “How do you know Ken?” Virginia answered, “He is my husband. I am his wife, Virginia.” She said Kate’s face lit up and she said, “I’ve heard your name. I’ve heard such wonderful things about you. I am so glad to put a face with the name.” Although some might focus on the sad aspects of memory loss at at time like this, Virginia celebrated the moment with Kate who was so happy to meet her (again). When Virginia told the the story, I felt the same way.  It makes me happy to know she can experience such special moments.

She had a similar experience when we first arrived on Tuesday. She saw the photo album Ken had sent to her about ten days ago. She went through it two or three times. Each time she experienced it as though it were her first time to see it. Each time she showed Ken and Virginia a page with their wedding picture.