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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.

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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.

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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.

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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.

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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.

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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.

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Sometimes it’s hard to be independent.

I’ve mentioned in other posts that Kate is becoming increasingly dependent on me. While she is accepting and requesting my help, there are still plenty of occasions when she prefers to do things on her own. It is especially difficult for me to judge whether or not she wants help is when she is going up or down stairs or curbs. It seems like half the time she does and half the time she doesn’t. I try to handle this by standing in front of her ready to give her a hand if she wants it. If she is behind me when we approach a curb, I often hear her say, “Hand.” Then I turn and extend my hand. Just as often, I extend my hand when she hasn’t asked only to have her refuse to take it.

It is similar with her clothes. Increasingly, she wants my help, but many times she doesn’t. Yesterday morning in Chapel Hill, I had put her clothes out for her. When she started to get dressed, I told her to let me know if she needed my help with anything. She wanted to do it without my help. In a few minutes, she was about to put on her pants. She had trouble determining the front from the back. That caused her to ask me to check to see that she had it right. She didn’t. She thanked me. Then she proceeded on her own. At one point, she got her foot stuck in the pants leg. She had to ask for my help. I am glad that when this happens, she doesn’t seem to be irritated with herself for not being able to take care of it by herself. On the other hand, she often makes reference to her making mistakes. She is very conscious of the problems she has handling many daily activities. I am sure that is what leads her to thank me so often for taking care of her. She is very appreciative, and that goes a long way to reinforce my desire to help.

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Our Visit With Another Longtime Friend

We got in another good visit with the Stones yesterday at lunch. Dot had an obligation at church and joined us a little later. That gave Reggie and me and chance to catch up on a number of old friends and colleagues from our graduate school days. Although he has had a number of TIAs, I was impressed with his memory. In most cases, I thought his long-term memory for those days was better than my own.

Before meeting them, Kate repeatedly asked me their names and tried to remember them. It was impossible. Once again, she handled herself well. At one point after Dot had joined us, she said something about Dot’s manner or personality that was very complimentary. It was a reminder that although her memory is virtually gone, she is still able to perceive certain qualities in people. I wish I could remember exactly what she said. It may have been something about Dot’s smile that she felt conveyed a warmth that Kate liked. I have noticed that she often comments when she sees smiles that appeal to her. That is especially true with photos. It may also be a reminder of how important a smile can be for anyone in social encounters.

We (I) left the Stones on a high note. It had been wonderful seeing them again. I was glad we had made the trip. For Kate, the experience was different. She did not express her feelings, but I could tell she got along well during our time with them, but that her memory of them was gone right after we left them. Even while we were together, she couldn’t remember their names. When Reggie got up from the table to go out front to meet Dot, she said, “Who is he?” At no time did she remember that we were in Raleigh. That should not surprise me. She doesn’t remember when we are in Knoxville. It is interesting that wherever we are she tends to think we are in Fort Worth, her hometown. That connection is still alive.

After lunch, we drove over to Chapel Hill where Kate’s longtime friend, Evelyn Schmidt, had recently moved into Carol Woods, a continuing care community. We have always loved Chapel Hill. I was disappointed that Kate’s memory of the place is fading. Before coming last week, she spoke fondly of the town. Yesterday, she couldn’t remember it at all or why we were coming here.

Evelyn gave us a tour of her new home. It is set in the middle of a beautiful, wooded area. Of course, that is easy to do. One of the things we always liked about Chapel Hill is the trees. It is a deeply forested community. I loved seeing Kate’s reaction to Evelyn’s new residence. I mean the setting of the place, not the apartment itself. As we walked from place to place, she would wander away to the windows that open on to such scenic beauty. Her aesthetic senses were working on over time.

As we walked around, we met several of Evelyn’s friends who also live there. Interestingly, one of them received his undergraduate degree from TCU just a few months before I was a freshman there. He and Evelyn’s husband, were colleagues in the English department at UNC. Although Kate enjoys social encounters like this, her attention was still focused on the beauty around her. I’m not even sure she realized that he had been at TCU. If she had, she would have responded with more interest.

When our tour was completed, we went to dinner at a small French restaurant where we had a good meal and enjoyed conversation with Evelyn. Afterwards, we went back to Evelyn’s apartment that is still stacked with cardboard boxes from her move. We looked at some of her wedding pictures as we had done with Dot and Reggie. We had also attended Evelyn’s wedding. That was over 40 years ago. It was Jewish wedding, and I reminded Evelyn the impression that the stomping of the wine glass during the ceremony had made on our son. After that, he said he wanted to be Jewish so that he could break the glass.

We came back to our hotel, and Kate crashed immediately. She got up once about 1:30 this morning but is still sleeping soundly right now at 10:30. I’ll wake her shortly so that we can hit the road for Knoxville. I’d like to be back home for dinner.

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Yesterday Morning Conversation at the Residence Inn, Raleigh, NC

KATE:  Are you my father?

RICHARD:  No.

KATE:  Who is my father?

RICHARD:  Charles Franklin

KATE:  He’s nice.

RICHARD:  Very nice.

KATE:  Does he have children?

RICHARD:  Yes.

KATE:  Who are they?

RICHARD:  Katherine (Kate) Franklin Creighton

KATE:   She’s nice.

RICHARD.  Very.

KATE:  Who’s my father?

RICHARD:  Charles Franklin, and who would that make me?

KATE:  (No answer.)

RICHARD:  I’m your husband.

KATE:  (with a grimace, but joking) Oh, no.

RICHARD:  Yes, for 55 years.

KATE:  That can’t be.

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A Short Trip to Visit Long-Time Friends

Friday, we drove to Raleigh to visit with our friends, Dot and Reggie Stone. The trip seemed like a long one. Of course, it was compared to our typical trip to Nashville. We ran into a good bit of construction. It took us almost an hour longer than usual, but it didn’t seem to bother Kate. She was quite relaxed. I should add that she is usually peaceful in a car. That is one of the reasons I started our Saturday and Sunday lunches at restaurants that are 20-25 minutes from our house. I’m not sure how much she slept, but her eyes were closed most of the way to Raleigh. She talked very little.

I am trying to be especially sensitive to her response to this trip. In some ways, it is a test of our ability to make our planned trip to Texas for Thanksgiving with our son, Kevin, and his family. The other day he asked me if I thought we would be able to make it. I told him I would know more when we get back home Monday night.

I can see already that there is an extra amount of confusion that occurs when we travel. If she gets the least bit confused knowing where to go in our own home, you can imagine what it is like when we are in strange places. Nothing is the same. Not even the Paneras. <G> Yesterday morning I saw a tweet that indicated the length of short-term memory for someone well into dementia is 3 seconds. That’s a pretty good estimate for Kate, sometimes even less. This confusion means that she is asking “Where are we?” much more than at home.

Yesterday, we spent a good bit of time with Dot and Reggie. I prepared them for the fact that Kate often sleeps late and that I needed to be flexible regarding our meeting time. I was quite surprised when I got back to the room after breakfast to find that she was up and preparing for her shower. That was about 8:30. As I have done in the past, I made a sign telling her that we were in the Residence Inn in Raleigh, that I had gone to breakfast and would be “back soon.” This time it didn’t work. I put the sign right next to the clothes I had selected for her. I figured (incorrectly) that she would see the sign if she got up before my return. I was only gone about 20 minutes. When I asked if she had seen the sign, she said, “What sign?” I showed it to her. She had no recollection. I have no idea if she missed the sign or forgot that she had seen and read it. The good news is that she wasn’t worried that I was not there. Maybe the fact that she doesn’t see me when she gets up everyday has developed a comfort level. I don’t know. It’s another one of those things that is impossible to know. She can’t tell me how she felt, and I can’t get inside her brain to see for myself.

Because she was up early, we had a little time before meeting the Stones shortly for lunch after 11:30, so we stopped at a nearby Panera (of course). Between the time we left the hotel and the time we met Dot and Reggie, Kate continually asked me to tell her their names. I would tell her. She would try to repeat them. Then I would tell her again and so on. At one point, she got confused and thought we were also meeting our children, so she also asked their names. When I told her we wouldn’t see Kevin and Jesse, she was relieved. She seemed nervous enough about getting together with the Stones that adding the children seemed overwhelming. In situations like this, I almost always tell her that it isn’t important for her to remember the names, but she worries nonetheless.

It turned out we all had a good time and enjoyed good meals with a terrific tiramisu for dessert. It had been years since we had been together, but we picked up right where we left off.. It would be no surprise to people who know us that Dot and I talked more than Kate and Reggie, but I was pleased they contributed their part to the conversation as well.

After lunch, we went back to Dot and Reggie’s place. They have lived in a continuing care community for five years. I was interested in hearing about their decision, the move, and overall how they felt about being there. They have a very nice two-bedroom apartment overlooking a beautiful stand of trees. Kate and I both admired the view from their living room and the adjoining balcony.

I had not planned on our staying too long, but Kate seemed to be getting along so well that we were there until about 4:00. That’s a long time for Kate to stay engaged. By the time, we left she was tired. It was a successful visit. In a brief conversation with Reggie after lunch and an exchange of text messages last night with Dot, it looks like the Stone’s impression was similar to my own. I thought Kate engaged her social skills beautifully. I also think Dot did some things to bring Kate into the conversation. She showed us pictures from their wedding 25 years ago. It was interesting to see how young we all looked at that time. Kate was particularly drawn to pictures of their granddaughter. As I have mentioned before, she loves children, and the granddaughter is adorable. That’s a winning combination.

We came back to the room for little over an hour before going to dinner. We didn’t need much after our lunch, but that didn’t make any difference in our eating last night. Once again, we topped off the meal with a dessert. This time it was Key lime cheesecake.

Today we will meet Reggie for lunch. Dot has an obligation at church and will join us a little later. Then we’ll go to visit another friend whom Kate has known since our undergraduate days at TCU. We’ll have dinner with her this evening and return to Knoxville tomorrow.