When I turn off the main road into the shopping center where Panera is located, Kate often says something like, “Surprise. Surprise.” or “I know where you’re going.” Not so this morning. Instead, she said, “Where are we going?” Thinking that she would soon catch on, I said, “I think I’ll let you guess.” As we got closer, I asked, “Do recognize anything now?” She didn’t answer. When I pulled into a parking space, she said, “Panera.” I said, “You got it.” She said, “Well, I saw the sign.” This is a little thing, but it’s another sign that the connections with familiar places are weakening.
A Happy End to the Day
After returning home from dinner, we relaxed about an hour in the family room. Then we went to the bedroom where I played the last hour of Les Miserables. Shortly after sitting down in her chair, Kate asked (hand signals, of course,) if she could use her iPad. I told her that would be fine. I was curious to see if she would put it down when the music started. She didn’t immediately, but it wasn’t long before it grabbed her. That was it for the iPad. For the next hour, she gave her full attention to the music. As she has done in the past, she made frequent comments about the beauty of the music and the quality of the acting. For those of you who may not have seen this 25th anniversary concert, I should remind you that this is different from the stage production. It does not have the elaborate sets, and the singers do not act in the way they would on stage. All of the lead singers stand in front of a microphone as they would do in a typical concert. They do, however, use facial gestures as they would in the stage production, and they are always in role, even when they wait for the applause after each song.
At dinner last night, Kate told me that she was going to “crash” early. It didn’t happen. When Les Miz was over, she was so keyed up that it took a while for both of us to go to sleep. I had been up since 5:15 yesterday morning, so I was ready for bed. She was in one of her talkative moods. To me it is fascinating how much she is moved by this musical. I don’t think it is just the music. I believe it is this particular production that is so spectacular. At any rate, we turned off the lights and got in bed. Kate talked for a long time before dosing off. She talked about all the usual things – the beauty of the music itself, how wonderful that we could share things like this together, what a good marriage we have had, the wonderful things we have done together, our parents, and our children. In a way, it was almost like a child’s bedtime prayer, an expression of gratitude for everything we have done together. I wanted to sleep, but I wouldn’t trade anything for seeing her enthusiasm.
A Surreal Conversation
Kate and I just returned from dinner where we had the most (only) surreal conversation of our 55-year marriage. On a number of occasions, I have said that I wished I could remember the exact details of our conversations. That was never truer than right now. It began as we were backing out of our garage. She commented on “this whole area” where we live. I asked if she meant the house or the neighborhood. She said everything. Then she added, “I would like to live here if we move back.” Those last two words were the clincher for me. I knew that she thought we were in her home town of Fort Worth. I didn’t correct her. As we drove down the street, she commented on the trees and specific houses that she liked. Then she asked if she had “lived here before.” I started to tell her she lived here now. Instead, I said, “Yes.” She said, “On the way home, I want you to show me which house.” Before we arrived at the restaurant, she asked where we were. This time I told her Knoxville, Tennessee. She repeated “Tennessee” and said she liked it.
Once we were seated at the restaurant and placed our order, she said something else that made me believe that we were in Fort Worth. There was a pause in our conversation. Then she said, “Who is my mother?” After I told her, we began a conversation much like one I described earlier this week. She said, “Tell me about her. What was she like?” I shifted into my storyteller role and told her about her mother’s being from Michigan and that her father and mother had met there one summer when he had traveled there with his mother. I talked about her mother’s family and her parents’ courtship that led to their marriage and making their home in Fort Worth. My story was punctuated by her expressions of surprise at everything I said. That was very unusual. Typically, when I tell her things like this, she displays some sense of recognition. The only part of the story that struck a chord was when I talked about how well-liked and respected her mother was. I mentioned that her mother had come to Fort Worth as a stranger but was welcomed into the family, and she loved them back.
Then she redirected the conversation. First she said, “And they (her family) welcomed you into the family too.” Then she shifted gears again saying, “I want to thank you for being so understanding. You never rush me.” I do think I am pretty understanding. I also know that I try not to rush her. On the other hand, I know that she feels I rush her more than occasionally. I recognize, however, that when we are not in one of those “rushing” moments, she is very generous with her compliments. This was one of those times. I would like to say that my modesty prevents my telling you other things she said, but, alas, it’s my memory that’s the culprit. I do recall that immediately after saying such good things about me, she said, “What’s your name?”
From there, she found herself struggling for the right words. She asked the name of the university located here. I thought she might be thinking of TCU, but I told her the truth and said, “the University of Tennessee.” It turned out that I was right, but she accepted my answer without question. There were moments when she was slipping back and forth between thinking we were in Texas and then Tennessee. For me, it was like being in someone else’s dream. She moved so seamlessly from reality to imagination. It was surreal, and it lasted so long.
Later, as we turned into our drive, I asked if she recognized our house. She didn’t. This was the only time that I have been aware that she failed to recognize and say something about how much she liked it. There have been times when she thought it was a former house or a house in Fort Worth, but she has always recognized it before.
After our conversation, I might have expected her to want my help in directing her where to go when we got inside. This time, however, she walked straight to the bathroom to brush her teeth. After that, she didn’t say or do anything that suggested any confusion. She seemed perfectly normal.
Little Things, Greater Dependence
I continue to notice little things that illustrate Kate’s increasing dependence on me. One of those involves help with her clothes. I think that occurs because she is increasingly unsure of which rooms are which and where things are kept. For example, over the past week or so, she seems to have presumed that I would get her night gown for her at bedtime. She has also been wearing the clothes I put out for her. There have been a couple of times when she hasn’t noticed the clothes. I’ve asked if I could help. She says, “Clothes.” Then I show them to her. She has also started asking me which bathroom to use. I have started walking her part of the way and showing her where o go from there.
She more frequently calls for me in the house. Last night, after she had brushed her teeth in the guest bathroom next to our bedroom, I heard her call, “Richard, where are you?” I told her I was in our bedroom and asked, “Where are you?” She said, “I’m lost.” I met her in the hallway, and we came back to our bedroom. She wasn’t panicked at all. She just didn’t know where I was or how to get there. An interesting side note is that she is able to recall my name in situations like this. I hope that will continue. It seems like it would be frightening not to know where she is or how to call me for help.
Something else that is not new but happening more frequently occurs in restaurants. She picks up the menu, hands it to me, and says, “Order for me.” I find this especially interesting since I have been ordering for her for several years.
Brushing her teeth is another place I see changes. She brushes frequently. I try to keep toothbrushes and toothpaste in all of the bathrooms because she uses all of them. Most of the time she leaves them on the counter, but sometimes she puts either or both in a drawer or takes them to another bathroom. This makes it hard for her to know where she can find them. In our own bathroom, I’ve kept her toothbrush and toothpaste in a drawer. She usually puts the toothpaste in the drawer but puts her toothbrush on the drawer handle. Until the last week or so, I put it back in the drawer each time I entered the bathroom. Now, I leave it so that she can find it easily. In addition, I am starting to leave the toothpaste on the counter. We are both adapting.
Another Good Day
I am always concerned when Kate and/or I have any special obligations in the morning. That is the time of day when I am least likely to know when Kate will get up and how easy or difficult it will be to get her places. Yesterday, we weren’t going anyplace early, but I had a conference call meeting at 9:30 for an advisory committee on which I serve. The last meeting was almost two hours. This time I had made an 11:00 appointment with a new sitter who will serve as an interim sitter for Anita while she is out for a minor surgical procedure. I had already prepared the committee that I might have to break away a little early if I needed to get Kate up. As it turned out, everything worked out well. The meeting was unusually brief. It was over by 10:15.
When I went back to check on Kate, I found that she was getting dressed. That meant I didn’t have to be concerned about her being ready to meet the new sitter. We had a little extra before she came but not enough time to get a muffin at Panera. I had one in the freezer that I thawed. Then Kate worked on her iPad until the sitter arrived.
The sitter, Marilyn, arrived on time, and joined us in the family room where we chatted for about 30 minutes before going to lunch. We had a little over an hour and a half over lunch to get better acquainted. The interview turned out to be a nice social occasion. I felt very good about her and called the agency to let them know we were pleased and would look forward to her being with us on Monday.
Kate had her bi-weekly massage at 2:00. From there we went to Barnes & Noble for an hour or so before returning home to relax before dinner. She picked up her “Big Sister” photo book that her brother, Ken, had made for her. I brought a chair over beside her and watched as she went through almost the entire book. She loves seeing all the old pictures of her and her family. She continues to comment on several specific photos that she likes. I always enjoy seeing her enthusiasm. When she was near the end of the book, she said she would like to finish the rest tomorrow. Then without closing it, she went back to the beginning and started going through it again.
We had a quiet dinner at Casa Bella. We had already been there for Broadway night last Thursday. The musical performances are held in the larger back room. This time we took a quiet booth in the front of the restaurant and enjoyed ourselves.
From there, we came home. Kate asked me what she could do. When she asks this, I tend to think she is asking because she wants something different than the iPad. I suggested a few things, one of which was to work on her iPad. That is just what she wanted. She was so engrossed that she continued working her puzzles after I told her I would put on Les Miserables. A little later, she came back to the bedroom and got ready for bed. She was asleep a little earlier than most recent nights. It was a good day and a reminder that we still have many good times.
A Good Day
I realize that as Kate has declined over the past few weeks, I have had more sad moments to report than before. For that reason, I am especially glad when I can report positive news. That was the case yesterday. She slept late, and it was a day for the sitter. That means I spent less time with her, but it was quality time. As I noted in a previous post, Kate’s mood has a significant impact on mine. Yesterday, she was upbeat all day. That by itself would make for a good day.
We were able to have lunch together before the sitter arrived. Then I was off to the Red Cross to donate platelets. Shortly after I got home, we went to dinner. We had a very pleasant time despite the fact that she kept asking me the name of the restaurant. Once we were back home, we sat in the family room where I watched the evening news, and she worked on her iPad.
About 8:30, we went to our bedroom where I decided to test her response to Les Miserables again. After thirty minutes, she said she wanted to watch more but was tired. I told her she could go to bed, that we could watch more tomorrow. I intended to turn off the TV, but she wanted me to leave it on so that she could listen a while. Then she pulled the covers over her and said, “Good night, I love you.” She paused for a brief moment and then added, “Whatever your name is.” I said, “Richard Creighton, and I love you.” Then she said, “What’s your name?” again. A few minutes later she turned over in my direction and blew me a kiss. Once again, she asked my name. As the music proceeded, she audibly expressed her pleasure. She was quite moved and said, “It’s so beautiful; it makes me want to cry.” She was happy. So was I.
Update on In-Home Care
It’s hard to believe, but it was a year ago on September 8 that I engaged a sitter for the first time. I chose to work through an agency that was one of several recommended by Kate’s doctor’s office. I had thought about bringing in sitters for at least six months before making the commitment. I just wasn’t ready until I felt I could no longer leave her alone. That was a specific problem for my exercise at the Y three days a week and my weekly Rotary meeting as well as a monthly meeting at United Way.
There were a few rough edges in settling into the two people we have had for all but two weeks since then. The good news is there was no problem introducing them to Kate. I had dreaded telling her because I thought she might resist. It turned out that she only asked why I was having someone stay with her. When I told her I was feeling less comfortable leaving her alone and thought it would be better for her to have some company, she said, “Okay.” That was it. She’s always been very cordial with both of them. There have been several times when she wanted to go with me or frowned when I told her the sitter was coming. Most of those times have been recent. I believe that relates to her growing dependence on me.
Knowing that Kate doesn’t like to remain at home for very long at one time, I purchased a Panera gift card and told the sitters they can use it for themselves as well as for Kate. Until recently, they have always spent time at Panera. Now, it seems like they go most of the time but spend less time there on each visit.
We are introducing a new sitter next week. Anita, who comes on Monday, is having a surgical procedure that will prevent her being here. The agency did not tell me the problem but said they were not sure if she would be out more than one day. This morning at 11:00, Kate and I will interview a new sitter. I thought we would meet here at the house for about 45 minutes and then go to lunch. I would like to get to know her as well as possible in the time we have. Following our time together, I will call the agency and let them know if I would like to have her come on Monday or interview someone else.
From the start, the biggest problem was my accepting someone else to care for Kate. I now have a better appreciation of why my dad was uneasy about in-home care. Even now, I am not fully adjusted to having a sitter; however, I really believe this is a wise thing to do. Having sitters has enabled me to continue going to the Y, to attend Rotary and other meetings, as well as running errands and meeting my friend, Mark Harrington for coffee on Friday afternoon.
I should also say that I have been pleased with the sitters themselves. They are not CNAs (Certified Nursing Assistants), but the only need we have had so far is simply to be here with Kate and to take her to Panera when she wants to go. In other words, they simply spend time with her.
Overall, having sitters has worked for us. It has enabled me to continue my life apart from caregiving. Although I have never thought of it as a way to minimize stress, I suspect it has served that purpose as well. Having additional help has also been a good transition for Kate and me as we look toward the future when she will require more care. I haven’t been ready to increase the time, but I suspect that may happen soon. I’m not sure what part of the day I will need it most. If Kate were to start getting up at night, I might want someone to be here during that time. On the other hand, Kate will eventually need help with her shower. That would mean having someone in the morning unless I decided to switch her shower to the evening. As with other things, I’ll take this one day at a time and see where it takes us.
Thoughts on Travel
In connection with our weekend trip to North Carolina, I have communicated with two friends who have asked essentially the same questions. “Considering the benefits of our trip and the challenges presented by it, was it worth it? And what are the implications for our plans to spend Thanksgiving with our son and his family in Texas?” The first is the easier one to answer. I was glad to have made the NC trip. That could very easily have been the last one we will make there together. It was a very good experience for me. It was definitely a disappointment that nothing we did enabled Kate to appreciate the past in the way that I could. My expectations were not high, but I did hope that she would express more glimmers of recognition. Ironically, the only things she said she remembered were two things we had never seen before, both places where our friends live. I can’t be sure and can’t explain it, but I believe that on some level she recognized Dot, Reggie, and Evelyn. She certainly gave every sign of recognition, but I know from past experience that she can easily do that without recognizing who she is with.
The more difficult question is whether or not I believe we can make the trip to Texas for Thanksgiving. That is complicated by the unknowns concerning Kate’s situation at the time. If we were traveling today, I would go. I also feel this trip is an important one to make as I believe it will be her last visit to Texas and our son’s family. With that in mind, I bought our airline tickets yesterday. That should clearly express my intent to make the trip.
As you have no doubt picked up, Kate is declining more noticeably now. Thanksgiving is 8 weeks from tomorrow. I have no way of predicting what she will be like at that time. I intend to approach everything we do one day at a time. So far that has worked for us. We have often been able to do things much longer than I thought possible. This time I am not predicting what will happen. I will be ready if we can make it. If not, we will make other arrangements for Thanksgiving and be thankful for all the good times we have had and others that are sure to follow.
Kate’s Mood and Mine
I recently read an article that encouraged caregivers to be sensitive to their own moods and the impact that can have on those for whom they care. The author stressed how well people with dementia can read moods and feelings long after they have forgotten most people’s names. I have long observed this quality in Kate. In fact, Monday morning while we were in Chapel Hill, she overheard a man talking on his phone. I hadn’t noticed him until she said, “I don’t like him.” As we sat there, she continued to pick up things he was saying. Several more times she repeated that she didn’t like him. I never knew exactly what he was saying, but it seemed to me that what she was not responding to what he said but the emotion with which he was expressing himself. That was far from the first time I have been aware of how much she reads the emotions of others. Almost all of those experiences have been more positive ones.
Long before I had been aware of the ability of people with dementia to read emotions, I believed my own emotions could or might influence how Kate is feeling. I thank my background in social psychology for that. One of the first things taught in the introductory course is that all of us influence others as well as being influenced by them. I had observed that in my relationship with Kate years before her diagnosis. Many times in this blog I have commented on how my own mood has been affected by Kate’s behavior. When she is not doing well, I don’t feel so well myself. When she is enjoying herself, I am too.
Over the past few weeks, I have been especially conscious of how she affects me. Even as she has declined, she has given me a boost when she has been cheerful. For a couple of weeks, she was very talkative. She was expressing gratitude and appreciation. At the same time, she was in the process of forgetting my name and her own, something that is certainly depressing; however, I was feeling good because she felt good. During her several anxiety attacks, my mood dropped significantly.
Over the past week or so, especially while on our trip to North Carolina, she has been less upbeat. This wasn’t so when we were with our friends but when we were alone. She rises to the occasion with others. That is definitely true at first. The longer we are together the more withdrawn she becomes. During the trip in the car, she was very quiet. That was also true most of the time we were alone. It was quite a contrast with her talkativeness in recent weeks.
Yesterday her mood was more upbeat. We had an especially good conversation at lunch. It wasn’t because she was any less confused about where she was or because she didn’t have trouble with names. In fact, it was one of those times that is such an interesting blend of her symptoms with her normal personality.
It began with her talking about our marriage and how fortunate we are. As she usually does, she brought up our children and how proud we are of them. Then she said, “What is your name?” I told her, and she asked her name. Then she asked me to tell her about her parents. I told her almost like telling a child a bedtime story. I told her their names and how they had met, about her mother’s moving from Michigan to Texas, and how she had become such a valued member of her father’s family.
Then she wanted to know about our children. Again, I told it like a story. I described our excitement when they were born and how proud we have been of the way each of them has matured. She took great delight in hearing about both her parents and her children. She was very happy. Although asking her questions is a clear expression of her memory loss, there wasn’t the slightest sign that she frustrated, anxious, or fearful. She was simply asking for and receiving information about those who are most precious to her and loving it. I am only sorry there was no way for her to grasp what an impact she had on my mood. I am also hopeful that with her further decline, we will still have moments like this.
A Trip Forgotten
Yesterday morning, Kate was worn out from the weekend trip to Raleigh and Chapel Hill. I finally woke her at almost 11:00 so that we could get bite to eat and take a quick look at several places in Chapel Hill that I hoped would bring back memories for both of us. It worked for me but not for Kate. Her memories of people and places come and go. They have been going more lately. That was the case for Chapel Hill. I had looked forward to rekindling the feelings of the past, but it was not to be. I don’t mean that she didn’t enjoy the experiences we had. That would be especially for our time with the Stones and Evelyn Schmidt. The problem was that she was never able to remember our connections to these friends nor this part of the country where we spent three years early in our marriage.
It was, however, very important to me. I remember our time there when we were much younger, and I remember this past weekend. Yesterday, Kate didn’t even remember that we had been there over the weekend. As she continues her decline, I find myself more frequently reflecting on our past but also trying to keep in mind that we are still creating new memories. I know that I will reflect on them in the years ahead.
