I keep noticing and mentioning things that Kate does that come as a surprise given that her memory is so weak. She is now in bed with her iPad. I have a James Galway album playing in the background. A moment ago, she said, “I love this.” It was Sondheim’s “Send in the Clowns.” The recording she has heard most often is a vocal rendition, especially one by Barbra Streisand. As she listened, she said, “This is one without the words. They’re both good just different.” It surprised me that she was able to make the distinction and to express it. She has never been able to distinguish her iPad in its red cover from mine that has a black cover and is the larger version. This may be another way in which a person with dementia is able to respond appropriately to music.
Success at the Movies
Movies have played a significant role in our entertainment. That has been especially true for the first five or six years after Kate’s diagnosis. About a year ago, that began to change when she could no longer appreciate them. I was surprised that she had enjoyed them for so long. She hasn’t been able to follow a plot for at least three or four years, perhaps longer.
Among the things I have learned about dementia is that people diagnosed with the disease retain many abilities even when their memories fade. For example, they can often read emotions of those around them. I suspect that ability has helped Kate appreciate movies that she doesn’t understand. She gets a feeling for the characters. When she likes them and the situations in which they are involved, she becomes engaged. She has a positive experience. She can also relate to people and situations that are important. For example, she liked Darkest Hour. She recognized Churchill as an important historical figure. She knew that World War II was a horrific event of our time. She could sense that the movie dealt with significant aspects of the war.
Unfortunately, I have found fewer and fewer movies that really engage her, but I keep trying. Yesterday, I had a success. Normally, the sitter would come while I attend my weekly Rotary meeting and then exercise at the Y; however, I received a call from the agency that Anita was sick. They were happy to send someone new, but I decided to skip Rotary and the Y and spend the afternoon with Kate.
Over the weekend, I had received an email from Kate’s brother, Ken. He said that he and Virginia had gone to see RBG and liked it. Sometime within the past year, I read Sisters in Law. It focused on the lives of Sandra Day O’Connor and Ruth Bader Ginsberg. I have always enjoyed biographies and found both justices to have led fascinating and inspiring lives. That and Ken’s recommendation prompted me to take advantage of a free afternoon with Kate to see the movie. I am so glad I did.
The film provides an engaging account of Ginsberg’s life and personality. Her story is an interesting one. I was especially pleased that Kate enjoyed it. As we walked out of theater, I said, “Isn’t it amazing how someone so slight in stature and so soft spoken in her own personal style could achieve such success.” Kate said, “Who is that?” I said, “Ruth Bader Ginsberg, the woman the film was about.” She said, “I want to see that film.”
What’s truly amazing is how Kate could have watched the whole movie about Ginsberg, love it, and then not recognize who I was talking about. It is a beautiful illustration of how she can enjoy a movie that she can’t understand. I hope I’ll find others that will give her an equal amount of pleasure. That keeps me happy.
Still Enjoying Musical Theater
Kate’s memory continues to disappear, but we are still enjoying some of the things that have been important to us throughout our marriage. One of those is attending live performances. Her enthusiasm for some things has lessened during the time we have lived with Alzheimer’s, but we both get a boost when we attend most musical events.
This past Sunday afternoon we attended Hairspray at one of our local theaters. We had originally seen it on Broadway and liked it. That made me wonder if we would feel the same about a local production. I had no need to worry. It was outstanding. Each time we attend an event like this, I also wonder how Kate will enjoy it. At some point, I know she won’t. We haven’t reached that point yet. I hope it is a long way off.
By chance, we sat next to a couple that we see at three different restaurants we frequent. We arrived early enough to get a little better acquainted with them. What began as a musical experience also became a social occasion. It was a banner day for us. Experiences like this go a long way in helping us to maintain a positive outlook about life.
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.”
A Rare Moment
Over the past 2-3 years, Kate has lost her interest in television. I suspect that is because it’s too hard for her to follow. Until the past year or so, she sometimes turned on the Today Show in the morning. She rarely, if ever, turns the TV on these days. I record the PBS Newshour and watch it after we return home from dinner. She sits with me and works on her iPad. I sometimes watch Nature as well. When I do, she occasionally looks up and notices something that catches her eye. Otherwise, she devotes her attention to the puzzles on her iPad.
Thus, it is something of a rarity that we watched some of the Royal wedding that took place on Saturday. No, we didn’t get up at 4:00 a.m. I recorded an ETV/BBC recording that began at 9:00 a.m. After lunch, we watched the portion that involved the wedding itself. Prior to that Kate had been working on her iPad. She put it down when Harry and William took their places in the chapel and didn’t pick it up again until Harry and Meghan departed in their coach.
Neither of us is a follower of the Royals, but both of us took interest in this wedding. I can’t speak for Kate, but events like this have taken a different place in my life since her diagnosis. During the wedding I was reminded of the wedding vows we took that were very much the same ones as those of the Royal Couple. In particular, the words “in sickness and in health . . . till death do us part” were more meaningful now than at the time we said those same words in 1963. I trust that I am now and will continue to honor that commitment. I have no doubts that I will. It was a rare moment for us to be watching TV together and a touching one for me.
Reflecting on Travel
As I noted in my previous post, our trip to Texas went well. We had a good time with our son and his family as well as Kate’s brother and his wife. On top of that we didn’t have any bad experiences. I wish I could say that about other trips we have taken. During or after several previous trips, I made changes in our future travel plans. For example, after a wonderful trip to Switzerland in 2015, I decided that would be our last international trip. In June 2015, we took our son and daughter and three grandsons to New York City. It, too, was a great trip, but I decided Kate and I would not return. In January 2016, we took a cruise to the Caribbean that led me to cancel a subsequent cruise I had booked for that May. One of the hardest decisions of all was one I made last summer when we made our thirteenth visit to Chautauqua, NY. I felt it was best that we make that our last one.
Any kind of travel requires a certain amount of adjustment. Being in a place that is different means having to meet the demands of different schedules and routines. All of the normal issues are compounded when one is traveling with a person who has dementia. Much of that involves packing the right clothes and medicines, getting to the airport on time, going through security, and boarding the plane. Restrooms add another set of problems. Renting cars or using taxis, trains, or buses represent more potential trouble.
These complications have to be balanced against the pleasure of the travel itself. In each instance where I decided to cease that particular travel, I decided the potential costs outweighed the benefits. For example, the cruise I canceled was a two-week cruise from Barcelona to Amsterdam. It was clear from the January cruise to the Caribbean that Kate did not enjoy some of the things she had enjoyed on other cruises. That included the nightly entertainment. She didn’t attend a single night. She also found it challenging to engage in conversation with the people we sat with at each evening meal. In addition, I lost her for about 30 minutes on the pier where our ship was docked in St. Thomas. I didn’t want to think about the possibility of losing her while we were off the ship at one of the ports in the Mediterranean.
Our trip to Texas has led me to think a little more about the role that familiarity or lack of familiarity plays in the stress and enjoyment of travel. Throughout our marriage Kate and I have been pretty bold about traveling to unfamiliar territory. When our children were 4 and 2, we took the children with us on a 6-week trip to Europe, 3 weeks in Spain and 3 weeks in France. We went without a specific itinerary or hotel arrangements except for a hotel in Madrid when we arrived and a hotel in Nice 3 weeks later. Not only that, but our two-year-old was in cloth diapers, and we didn’t stay in a single hotel with a bathroom in our room. We did have a sink that Kate used to wash diapers each day.
Even though Kate does not remember where she is when she is at home in Knoxville, she is accustomed to certain routines like going to restaurants, getting her nails done, going to musical events, etc. Travel throws her into a set of things that are either new or forgotten. That places more responsibility on me to manage her. I find that increasingly stressful. Upon our return home, I immediately felt a sense of relief. That’s not because I have any less responsibility for Kate. I believe it relates to the greater familiarity with our surroundings. I have greater control over our whole situation. I have a better sense of the options should we encounter a problem. The good news is that I feel somewhat the same way when we arrive at the home of a family member, it is easier for me. It’s getting there and back that is the big issue.
The success of this past week’s trip leads me to believe there is a good chance that we will be able to return to Lubbock for Thanksgiving. Of course, that is six months away. If Kate’s decline continues as it has in the past few months, I might change my mind.
Travel Day 7: San Angelo to Lubbock
A week ago today, Kate and I left on our trip that brought us to Lubbock and San Angelo after an overnight stop in Nashville. I am glad to report that the trip went well. I had planned the trip since our last visit here in January. On that trip we were able to spend very little time with Kate’s brother and his wife. Knowing that future trips may not be possible, I felt this was an important one.
It was an especially good visit. We enjoyed being together with Ken and Virginia. It was a perfect blend of easy conversation mixed with visits to interesting places. One of those was the restaurant at which we had lunch yesterday. It is located along the Concho River Walk. It was a beautiful day to be overlooking the river.
We said our goodbyes to them after lunch and made the drive back to Lubbock. The day was not over. We topped off our visit to Texas by getting together with our son and his family for dinner at our favorite BBQ place in Lubbock. We went back to their place where we played a game of Sorry before we came back to the hotel for the night. Kate gets very confused playing games; however, a game of chance like Sorry gives her an opportunity to shine. She did just that by winning.
As I have mentioned before, her recent sleep pattern has been more erratic than in the past. During the trip, she seems to have gravitated back to her old pattern. She has been getting to sleep somewhat later than normal but is getting up between 9:00 and 10:00. That seems to be a pretty good routine. During the trip, she has been completely off her Trazadone that was to aid her sleeping. I am happy to see her drop a medication.
Today, we fly back home via Nashville. No overnight this time. We arrive there about 6:10. We’ll get something to eat and then drive drive to Knoxville. Although Kate has been confused over people’s names and where we are, she hasn’t displayed any uneasiness that I can tell. Travel is more demanding than it was prior to Alzheimer’s, but we haven’t encountered any special problems like losing her in an airport as happened last fall. It’s been a week of special moments with family. Our trip has been a success.
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.
Travel Days 5 and 6: San Angelo
We left Lubbock on Tuesday right after an early lunch and drove to San Angelo where we are spending two nights with Kate’s brother, Ken, and his wife, Virginia. We arrived in time to have a pleasant afternoon in their home catching up on the happenings in our lives since we were last with them in January. We didn’t have much time together on that occasion. That is why I wanted to arrange another visit. Given the changes Kate has been making over the past few months, I’m not sure if we will be able to make it back again. Virginia fixed dinner using two popular recipes of Kate’s and Ken’s mother, chicken spaghetti and asparagus casserole. It was a perfect way to celebrate being together again.
Yesterday we spent the morning at home. Kate slept a good bit. She joined us about 10:30. We looked at some old family photos and chatted more before going out to lunch. We relaxed at home during the afternoon and went out for a nice meal at a restaurant overlooking the area near their home.
She continues to forget where we are. She woke up around 4:00 a.m. yesterday and went to the bathroom. When she returned, she said she was going upstairs. Ken and Virginia live in a single-story home. I told her we were at Ken and Virginia’s. She said, “What are we doing here?” I explained that we were visiting a couple of days after having spent a few days with Kevin and his family.
Despite this confusion, she has enjoyed herself. Both nights, we watched a DVD on the history of Fort Worth. Since that is where Kate and Ken are from, and I lived there while a student at TCU, it was of special interest to us.
This afternoon we return to Lubbock where we will have dinner with Kevin and his family. We will spend the night and then fly out to Knoxville tomorrow.
Travel Day 4: Lubbock
Yesterday we had a shorter than usual morning. At least I did. I didn’t get up until 7:00 and Kate didn’t get up until 9:15. By the time Kate was ready to get something for breakfast, it was almost 11:00, so we skipped Panera. Instead we dropped by a Starbucks that is one block away from the restaurant where we were to meet Kevin, Rachel, and Brian. Kate, Brian, and I decided to visit the National Ranching Heritage Center during the afternoon. Kevin had a conference call to make before then. That meant that we didn’t get away until almost 2:30. I think all three of us enjoyed the museum. It was especially engaging for Kate. I am sure she couldn’t understand all that she read or that I read for her, but she tried to take it all in. Quite a few times she turned to me and said, “I want to remember that.” That’s what she says when she wants me to be responsible for remembering something she wants to include in her family photo album. Of course, she hasn’t done any work on the album for two to three years. I know she won’t ever get to it again, but I always tell her I will remember “it” for her. We left the museum through a different door than the one we used to enter. When we walked by the entrance, Kate noticed it and acted like she wanted to go in. I hesitated in responding. Then she said, “Have we already been there?” I told her we had. I didn’t tell her we had just walked out of it.
This was a day when she didn’t ask me to remind her of a single name. She either remembers the names (unlikely) or has learned that she doesn’t have to remember the names in order to participate in our conversations. She did ask several times where we are or where she is. One of those times we were with Kevin. When I told her we were in Lubbock, she said, “So we’re not in Fort Worth.”
We went to an Italian restaurant for dinner. Kevin, Kate, and I arrived at the restaurant first. Kate wanted to use the restroom. I took her there. She asked me to “stay right here” outside the door to the restroom. I only recall her asking me to do this one or two other times. She obviously recognizes her difficulty getting back to our table. We had a good meal. From there we came back to our hotel. For the second night in a row, we sat in the courtyard. It was a good way to end another nice day.
