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Rehearsing Names on Mother’s Day

Kate was up and ready for breakfast at 9:30 this morning. That is earlier than I expected given that she didn’t get to sleep until about 10:30 last night. As we walked down the hall to the breakfast area, I told her that our daughter had sent her a text this morning. She said, “What’s her name?” I said, “Jesse.”

I selected a table and went to the buffet to get her some juice and yogurt. She has been working puzzles on her iPad. A few minutes ago, I showed her the text from Jesse. It said, “I love you, Mom.” She said, “That’s sweet.” Then she asked, “What’s her name?” I told her, and she asked her boys’ names. I told her. Then she said, “What’s my mother’s name?”

She displayed some confusion while dressing this morning, but I don’t think it was significantly different from what happens at home. To make dressing easier when we are traveling, I put out her clothes (from underwear to shoes and socks) for her. I wish that prevented misplacing things or putting her clothes on backwards, but it doesn’t. Caregivers talk a lot about the challenges we face, but I don’t think it compares to what our loved ones experience. And Kate faces them with few outward expressions of frustration. I think she is remarkable.

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Another First, Feeling Pressure Over Names

We arrived in Lubbock a short time ago and have checked into our hotel. For the first time, Kate is feeling a good bit of pressure concerning the names of our son and his family. As I have mentioned quite a few times, she often has difficulty remembering their names along with those of daughter and her family as well as virtually all of our friends. She has often practiced them with me. She does this even at times when we are not apt to be seeing those whose names she is trying to remember. Since leaving Knoxville yesterday, she has asked me to tell her the names of our son, Kevin, and his family a number of times. The difference this time is that she is really concerned. I asked if she might find it helpful if I showed her some pictures I have on my iPad. She said that might help. I brought up some pictures taken at Christmas. I quickly discovered that this was too overwhelming and stopped. She said, “You’re just going to have to help me with this.” I assured her that I would help her and that she would be all right. I told her that she would remember them as soon as she saw them. She was skeptical. Then she asked me to tell her my last name.

Our son is flying in from Chicago where he attended a professional meeting. His plane is scheduled to arrived in 45 minutes. In the meantime, I have spoken with our grandson, Brian, who returned home from his freshman year at TCU. We are all going to meet at Panera and then choose a place for dinner. The rest of the family will be attending a banquet for the band. This may be a good thing. Instead of trying to remember all five of them together at one time, she will just have two.

It would not be surprising for you to know that she also can’t remember where we are (Nashville this morning and now Lubbock). After all, that is nearly impossible when we are in Knoxville. It really is impossible when we are out of town.

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A Travel Day

Today, Kate and I take the first leg of our trip to Texas. We are driving to Nashville for a visit with Ellen who has now moved into a new assisted living facility that is much closer to her daughter. We’ll have dinner and then spend the night near the airport where we catch a plane to Lubbock tomorrow.
We’ve stopped by Panera for Kate’s muffin. On the way over, I mentioned that today is the twins’ (our grandsons) birthday and that they are now 16. She said, “What twins?” I told her. Then she asked,”Who is their mother?” I said, “Our daughter, Jesse.” The she asked her last name. This kind of exchange has become a regular occurrence, not just once a day but quite a few times. She asks without any particular concern or worry. She does it very naturally. I answer her in like manner.

It was two years ago, that I took over all the packing for our trips. Kate has never said a word that would suggest that she has even noticed.  That is why I started in the first place. We were making a weekend trip. I had put her suitcase on her bed. When it was time to leave, I went to her room and found the suitcase had been closed and was sitting upright on the floor. I picked it up to take to the car. When I did, it was so light that I opened it to look inside. There was nothing in it. I quickly gathered things together and put them in the suitcase. I didn’t say a word to her, and she never said anything to me. Since then, I have done all the packing from the start.

We will be occupied a good bit today, so I probably won’t be back in touch after this. I do intend, however, to make periodic posts while we are gone. We get back one week from today.

Have a great day. That’s what we plan to do.

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Our Afternoon After the Sitter Left

At Barnes & Noble this afternoon, Kate looked across the table and asked, “Are we in Fort Worth?” I said, “No, we’re in Knoxville, but we will be in Lubbock on Saturday.” She said, “Who lives there?” I told her our son. She said, “And what’s his name.” I said, “Kevin. He is married to Rachel and they have three children.” She said, “And they are?” I gave her their names. I joked with her and said, “Was I right?” With a very slight chuckle, she said, “I just hope I can remember them.” This recognition of her memory problems is very different from the early years. For a long time, she was really bothered by not remembering things. Not now. That is why I think she no longer connects her problems with her Alzheimer’s.

We left there for our Monday night Mexican meal at Chalupas. As we drove away from Barnes & Noble, Kate said, “ “I’ll stay anyplace as long as I can just relax.” I guessed that she must be thinking that we were out of town. I said, “You like to relax in the evening, don’t you.” A few minutes later, she said, “So, are we really in Fort Worth?” Once again, I told her Knoxville. About midway through our meal, she asked, “Exactly, where are we right now? I told her again. Within moments, she asked again. She doesn’t act disturbed, but it seems clear that she wants to remember and does the only thing she knows how. She keeps asking.

When we got home, we settled in the family room where she looked through the photo album her brother, Ken, had made for her. She spent about 20 minutes leafing through the pages and commenting about the photos and the people in them. Not long after that, I took a phone call from Dorothy Hinely, a longtime friend who now lives in Virginia. She and her husband, Mike, are in town and wanted to have lunch tomorrow. We made arrangements to meet at Casa Bella at noon.

When I came back to the family room, I told Kate about our lunch plans for tomorrow. She couldn’t place the Hinelys and asked me to tell her the names again two or three times. Then she looked at me and said, “You might have to help me with them in the morning.” I told her I would be happy to. I may be wrong, but the look on her face seemed to express the first sign of discouragement over her memory issue in a long time. She said, “Thank you. I really couldn’t live without you. I mean that.”

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A Nice Ending to Another Good Day

Although we got a late start and Kate slept later than I wanted, we had a nice day that ended in a typically good evening. I do have to report, however, that Kate had a good bit of confusion in the evening. Several times at dinner, she asked,”Exactly where are we?” The first time I said Knoxville. Five or ten minutes later, she asked the same question again. This time I asked if she meant the city. She nodded. Again, I told her Knoxville. She asked at least once again while we were eating and then again as we walked out of the restaurant.
In addition, we saw Dan Carlisle, a retired music professor from UT who was our son’s piano teacher for two years while he was in high school. He is a regular at this restaurant. He is almost always there when we are. I pointed him out to Kate soon after he arrived. A short time later, she asked his name. That happened again once or twice before he had finished his meal. Until last night, she has been able to recall his name. She often mentions he is there before I’ve seen him.

Once we were home, Kate wanted to go in the living room where we sat for about thirty minutes. We hardly ever use this room any more. She was very cheerful and talkative, something I love to see. She talked about what a nice room it is. I mentioned the furniture and other items we had gotten from her parents’ home. She liked that. She took special pleasure in the Royal Doulton China figures that her father had given to her mother. After a while, she asked, “Exactly where are we?” I told her we were in Knoxville where we live. She said, “So this is our house.” It was a statement that sounded more like a question, and I said yes.

As we were chatting, Kevin called. We talked with him a short time and made plans for our upcoming visit to Lubbock next Saturday. We’re arriving at a good time. Brian will return home on Tuesday after finishing his freshman year at TCU. It will be good to hear what he’s been up to.

After Kevin’s call, it was time for bed. I headed to our bedroom. When she didn’t come right away, I walked to her room to see where she was. She was standing in the hallway near the door to the guest room and her room. She wanted to know where she should go and pointed to the guest room. I told her I thought our bedroom would be a good place. I asked if she would like me to get her night clothes. She said yes. I brought them to her. She had no problems like the previous night.

I went in the bathroom to brush my teeth. When I came out, I heard her call my name. She was in the hallway where I had seen her a few minutes earlier. The light was out, so she was completely in the dark. I turned on the light. She said, “Where do you want me?” and pointed to the guest room. Once again, I told her our bedroom would be best. She seemed relieved to see me. It appeared that she had lost me. It was dark, and she didn’t know where to go. This is only the second time I have observed any indication that she wasn’t sure about her way around the house. The other time was a few weeks ago when we returned from an evening at Casa Bella. When we got in the house, she said, “I’ll follow you.”

You may think it strange that I would say we’ve had a nice day after telling you about Kate’s confusion. I do find that all the new and increasing signs of her decline make me sad. On the other hand, my mood is also affected by her mood. She was in a good mood, and I find it especially uplifting to see her enthusiasm about our living room and the things we have of her parents. Life continues to change, but moments like this sustain us.

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Kate can be playful.

At lunch today, Kate looked at me across the table, smiled, and said with confidence, “Ask me where we are.” I said, “Where?” She said, “McAlister’s.” I said, “Wow.” Then she said, “Well, it wasn’t that hard.” As she said that, she looked at a sign on the table with the name printed on it. I followed that by saying, “I thought you meant what city.” Then she said, “What city?’ I asked, “What do you think?” She answered, “Fort Worth?” I told her Knoxville. She seems never to remember that, and we’ve lived here almost 47 years.

This occurred without any sense of frustration or concern about not knowing where she was. That is quite a contrast with the way she was in the early stages of the disease. She experienced a good bit of frustration then. I suspect that is largely a result of her no longer connecting her poor memory with her diagnosis. I also notice how open she is in acknowledging things she doesn’t remember. It is very natural to ask the names of people we see as well as our children and even me. While it always saddens me to see her memory deteriorate, I am also glad that she can be honest with me. I like to think it is a good thing that she has someone with whom she can be so open.

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American Gothic

Four years ago, Kate and I took our 15-year-old grandson, Brian, to Chicago. Among the places we visited was the Art Institute of Chicago. Knowing that this might not be among the most exciting places for him, we explained that we would not take a tour of the entire museum. Instead, I had found a brochure that identified about ten well-known pieces of art in the museum. This turned out to be an excellent way to engage him. Grant Wood’s American Gothic was among them. We told Brian that this was a painting he was likely to see in the future. When we said that, he recalled that one of the restaurants in Knoxville to which we had taken him has a print of it. Kate and I eat dinner at this restaurant rather frequently and always think of Brian when we see it. One of the jigsaw puzzles Kate works is American Gothic. Thus, it is a painting she sees quite often.

As with so many things, she has trouble remembering the painting’s name. Sometimes she gets “American,” but can’t remember Gothic. It seems to be prompted by seeing a print of the painting or the puzzle she is working on. A very typical experience occurred last night. She was working puzzles on her iPad and with sense of indecision asked, “American?” I said, “Gothic.” Then she repeated the full name. She looked down at her iPad and asked, “What is it again?” I told her again. This happened several times before she stopped. This is the way it always goes. I don’t think she ever gets more than American, and not always that, but she never stops trying.

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Another Marker. Something New on Forgetting.

Not long ago I wrote a post entitled “What does it mean to know someone?” I was trying to differentiate forgetting people’s names from remembering them (something about them, one’s connection to them, etc.). Those of us without dementia are familiar with this. Everyone has had the experience of forgetting the name of someone we “know.” When a person with dementia (PWD) does the same thing, there is a tendency to believe that means the PWD has totally forgotten the person. Often, however, it is just the name that has slipped, perhaps temporarily, from memory. Thus the PWD is able to interact quite naturally with that person in social encounters without the person’s even realizing her name was forgotten. Again, this is a common experience among those of us without dementia.

I have mentioned this with respect to Kate’s not remembering our children’s names. Much of the time she can’t remember their names, but she really remembers she has children and proudly talks about them. For that reason, I was surprised by something she said at lunch today. She looked at me across the table and asked, “Do we have children?” She said that in the same manner that a stranger might have asked us if we have children. Then without giving any sense of surprise on my part, I answered her very much the way I would have answered that stranger. I said, “Yes, we have two children, a daughter and a son.” From there, I gave her their names, where they live, and their spouses as well as their children. I even told her a few things about each of our grandchildren. I stopped because I could sense that I was providing more information than she could digest.

Her failure to remember that we have children represents yet another marker in her journey. I know that this is likely to have been an isolated moment in which she forgot, but it is a sign of the progressive nature of this disease. As always, I reflect and wonder about the future. When she will completely forget that we have children? I’m afraid that day is coming altogether too soon.

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Forgetting Names of Family

I’ve heard the expression “bitter sweet” most of my life, but it has become considerably more meaningful since Kate’s diagnosis. I could apply it to many of the things we experience every day. Take today, for example. On the way to lunch, I mentioned that tomorrow is our grandson Taylor’s birthday. She said, “And who are his parents?” I told her Rachel and Kevin. Then she asked, “And, they are?” I told her that Kevin is our son and Rachel is his wife. Then she asked me to tell her their last name.

At lunch I told her we are going to be with our Memphis grandsons on Thursday. She asked their names. She followed that with “Who are their parents?” I told her Jesse and Greg. A few minutes passed, and she asked, “What is your name?” I told her Richard. She asked, “What else?” I told her. Then she wanted to know if I had another name. I gave her my middle name. She said, “That’s a nice name.”

I should add that she has been in a cheerful mood since getting up this morning. She has teased me a bit and was a bit playful. For example, in the car she asked if she could do something, and I told her that would be fine. She responded with, “Thank you, Master.” I said, “You must think I try to control your life.” I said, “I don’t think I control your life.” She smiled and said, “You don’t, but you try.” She said this without any sense of irritation. She was saying what she believes, but doing so in a very kind way.

Kate has been very childlike in her questions about names. I suspect she has had more trouble with family names for longer than I have been aware. She was just guarded about acknowledging it. Now she asks me the names of people and places all the time and does so without any effort to disguise her memory problems. When she asks me to help her with names, I feel she has opened herself to me in a tender way. At these moments, I feel very close to her. There is a sweetness about this experience that is hard to describe.

At the same time, there is also something very sad watching her lose the connections between names and the people she loves so dearly. It is a bitter sweet experience.

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Life can be so confusing.

I often try to imagine what a day like today must be like for Kate. I know she can’t remember what city she is in, and I mean right here at home in Knoxville. She doesn’t know what restaurant we are in or what she eats even though I usually order the same thing for her. When we are headed someplace in the car, she never knows where we are going even though I have told her. I do know that she is often curious about where we are because she asks, “Where are we?” When I tell her something, she sometimes says, “I’ve already forgotten.”

Today was a typical one until 2:00. Kate woke up a little earlier, and we arrived at Panera shortly after 9:30. She was feeling a little tired, so we were back home at 10:45. She went to our bedroom to rest. I don’t think she fell asleep but she was in bed until I got her up for lunch shortly after noon. Then we were off to lunch.

We were back home at 2:00. I told her we were going to a visitation for a friend and would need to change our clothes before leaving. She couldn’t remember who had died even though he was the spouse of someone with whom we have had a relationship since I was on the UT faculty in 1971. I asked if she would like me to pick out something for her to wear. She said that she would appreciate that. I got her a pair of pants and a top with an attractive cardigan sweater to wear over it. I brought them to her and laid them out on our bed. I went to the bathroom to brush my teeth. When I came out, she had thrown the pants and sweater on her chair. I found the top on the floor. I said, “You didn’t put on your clothes.” She said, “Where are we going?” I told her again and showed her the clothes she was to wear. I went to the closet to get something for myself. When I came out, she was about to put on her cardigan sweater (no buttons) without her top. I told her to put on her top before putting on the sweater. She looked confused. Then I told her that first she should take off the top and pants she was wearing. When I said that, she congratulated me by saying, “Now that was clear.” That was all it took. She got dressed, and we left. I think I should say now that I was very cool during this process. I didn’t want to prompt a panic attack. I do everything I can to avoid those.

In the car, she asked me where we were going. It was then that I told her that we were going to a memorial service for someone I know from the Y and then we would go to the visitation for our mutual friend. I knew when I said it that was too much for her to grasp though I don’t think I could have prevented it. As it turned out, I didn’t see anyone that I know at the service. Of course, Kate didn’t either. She was incredibly patient throughout.

After the service, we headed to the visitation. Several times on the way over, she asked questions about who had died and the person’s connection to us. When I mentioned our mutual friend who had also been a professional friend with the school district, Kate couldn’t remember her. When we arrived at the funeral home, she asked if it were a church. She asked the same thing inside and as we got to the car afterward. She also asked who had died. The whole afternoon must have been a very confusing one for her. I really felt sorry for her, but she handled herself beautifully. I was the only one who knew just how confused she was.

Once inside, she told me she remembered being there before. She pointed to specific parts of the hallway that she recalled. As you might have guessed, we had never been to this funeral home. It is a fairly new one.

We waited in line for about twenty minutes before seeing our friend whose husband had died. Kate asked if she could walk around a room on the other side of the hall where we were in line. I told her she could and pointed to the chapel that was adjacent to the room she wanted to see. I noticed that she stepped into the chapel and looked around before returning to the line. As we were preparing to leave, we walked by the room, and I pointed to the chapel again. She was completely surprised and wanted to look at it again.

We spoke with our friend in the receiving line and then moved to the end of the room where they had set up a television with a slide show of pictures of our friend’s husband. While I was chatting with a woman that had been standing in line with us, Kate went to an adjoining room where they had some light refreshments and a display of various pictures and mementos of the deceased. When I got to the room, she said she wanted to show me a picture of someone who looked like her mother. She couldn’t remember where she had seen it, but I saw a picture that included someone I thought had to the one she was talking about. I showed it to her, and she confirmed it. Shortly afterward as we were nearing the exit of the funeral home, we got engaged in a conversation with the owner. Kate said she wanted to see the picture of “her mother.” She couldn’t remember how to get there. I pointed in the direction of the end of the hallway and said, “Turn right and it’s the first door on your left.” I knew she would not be able to find it, but I also knew she couldn’t go much further and get lost. Then a friend who was there offered to take her. I accepted. In a few minutes, I met her in the room with the picture. I took her over to the picture. It became obvious that she thought it was her mother. She looked very teary. In situations like this, I always have to decide whether to let it go or to tell the truth. In this particular case, I told the truth. I said, “It looks a lot like your mother, but she’s not. She accepted that without a problem. I am glad. I would have felt very guilty if she had been hurt by the truth.

Then we walked toward the exit. As we did, I saw one of our friends’ son and pointed him out to Kate. When I mentioned our friend, she had forgotten that our friend, as the wife of the deceased, had been the first one in the receiving line. We had already seen and spoken with her, but she said, “I want to speak to her.” In this case, I didn’t tell her the truth. I just said, “Let’s go back to the room where she was before and see if you can speak to her.” By this time, most of the crowd had dispersed. We found her talking with a member of the music faculty. Our friend’s husband had served as department chair for almost 30 years. It turns out that the faculty member with whom she was talking was also our son’s piano teacher during his junior and senior years in high school. We had just seen him at dinner the night before. We walked over to join them. Kate greeted our friend as though it had been years since she had last seen her. Our friend is aware of Kate’s diagnosis, so I don’t think she thought much about it.

It has really been a good day. I am glad that we went to both the memorial service and the visitation. I wish that it had not been so confusing for Kate, but she seemed to get along pretty well even in her confusion. In addition, the pain in her knee has been worse today. She has walked even more slowly than usual and took a good bit of time getting into and out of the car as well as her chair in a restaurant. She hasn’t complained, only acknowledged the pain. She is remarkable.