A Conversation at Panera

Kate’s being up so early this morning meant that that we also got to Panera early. I think this was the fourth day in a row that she was in a particularly good mood. She clearly recognized where we were as we drove up to the restaurant. When I gave her my hand to help her up the curb to the sidewalk, she didn’t want it. Then she quickly changed her mind, saying, “I didn’t really need it, but it helps.”

As usual, I got her situated at our table and went to the counter to order our drinks and her muffin. When I returned with the muffin, she noticed that I didn’t have anything at my place and wondered why. I explained that I had already eaten an omelet at home. She teased me a little saying, “You just had to have something healthy, didn’t you?” What was striking about this is that, except for lunch, I have only gotten something to eat two or three times in all the years we have been going there. This was the first time she has said anything.

For thirty minutes or so, she worked on her iPad while I worked on my earlier post. Then, I think I said something about her mother. I know that she asked her mother’s name. I told her. Kate said, “She was quite a woman.” and I said, “Your mother would be proud of you. Then she said, “Do you think so?” I said, “I know so.”

I proceeded to tell her one of the things that I knew her mother admired about her, the 19 years she served as the volunteer librarian at our church. As I have done a couple of other times recently, I told her about her work a little like telling a story. She was surprised to know she had served so long. I explained that she had the perfect combination of training, personal experience, and personality for the position and that no one filling that position had had each of those qualities. I told her how well-acquainted she became with the parents and children as well as the teachers and other church members. I also told her about the many people she had helped to find materials for some special purpose. My mention of specific things she had done, jogged her memory a bit. That led to her adding other things she remembered from those 19 years. It was a beautiful conversation, and I loved seeing how good she felt about the contribution she had made. The library really had become a vital place under her direction, and her mother really would have been proud.

Our conversation caused me to reflect a moment. Could memory loss affect my self-esteem? I always try to imagine what it must be like not to have a memory. I do know that Kate has said a few things over the past year that suggest many other people have something about which they can be proud and that she doesn’t. It is easy for me to imagine that if I had forgotten everything about myself, I wouldn’t be able to think of anything that makes me special. I might feel somewhat inferior to other people. This is an aspect of the disease I hadn’t thought about before. Kate hasn’t forgotten everything about herself, but she remembers less and less all the time. I try to bolster her ego in every way I can, but I plan to be more sensitive to this issue in the future. I want her to remember what makes her special.

A Surprise

For quite a few years, I have walked in the morning. Over the past three weeks, I haven’t walked at all. That’s because I have a pinched nerve in my left hip. I decided it was best to take it easy for a while, and it seems to be helping. That may have turned out to be a good thing this morning because Kate was up before 8:00.

I was in the family room when I heard something in the bedroom that made me think she was up. When I entered the hallway to our bedroom, I saw her walking toward me. She seemed concerned but not in a panic and said, “I was looking for you. I couldn’t find you.” I said something to console her. Then she tried to make light of the situation saying, “Oh, it’s all right. I just didn’t know where you were.”

Then she asked, “Where do I go now?” I asked her if she had gone to the bathroom. She said she had. Then I asked if she would like to take a shower. She did. I told her to come with me and took her to our bathroom. As I was turning on the shower, she said, “I looked all over for you. I didn’t know where you were.” Once again, I made an attempt at consoling her, and she said, “It wasn’t anything. I was all right.”

I left it at that, but this was an experience I have thought about before. Normally, I leave for my walk around 6:00. I can be back at the house between 7:00 and 7:15. I’ve thought about the possibility that she would get up and not find me. I didn’t worry much because she never leaves the back of the house until she has showered and dressed. In addition, she rarely wakes up before 9:00, and it has recently been after 10:00 and sometimes much later. Just in case she should get up before my return, I have always left a sign that says, “Richard is Walking. Back Home Soon.” I left it on the threshold of the doorway from the kitchen to the laundry room. That is a place she would easily see it.

All along, I have been prepared to give up the morning walk when I felt less confident that Kate would be all right if she found I was not home. Today’s experience was the first sign. It was fortuitous that it should happen when the pinched nerve had caused me to take a breather from walking.

The question now is what I do next. One thought is that I will not leave her in the morning. Another is that this change will probably lead me to increase the sitter time; however, I am not ready for that. I hope I can postpone that until sometime after the new year.

An Example the Strength of Feelings

Yesterday at my Friday afternoon coffee with Mark Harrington, I said something about Kate’s weakening memory for names. He said, “I’ll bet she still remembers some feelings.” I told him I had seen signs that he is right including her feeling about me as well as other family members and friends. Then I said, “I am sure she would not remember your name if she saw you, but she would probably think you are brilliant.” This morning he dropped by the house to pick up tickets to tonight’s symphony concert. I was outside when he arrived and chatted with him briefly. In a few minutes, Kate came outside. She walked over to Mark and gave him a warm greeting. We talked another few minutes. Then as he was getting in his car, Kate said, “You’re a good guy. You’re brilliant.”

He drove away. Kate and I turned around to walk back in the house, and she said, “What’s his name?” I said, “Mark.” She asked, “What’s his last name?” I said, “Harrington.” She said, “Oh, he’s brilliant.”

When Kate was diagnosed, I had no sense of things like this. They are things I have learned along the way, some by experience but many from things I have read. Either way, I think it is very important for all of us who care for someone with dementia to understand this. It means that even as some abilities diminish over time, others remain in place for a long time.

In our particular case, I am especially glad that Kate’s enjoyment of music doesn’t appear to have lessened at all. In fact, I think it is stronger now than ever before. I wonder if that might not be a direct result of losing some of her other abilities. It could be like someone’s losing her sense of sight but strengthening her sense of hearing. The important thing is to remember that a diagnosis of dementia doesn’t mean all is lost. If it did, our lives would have been very different.

Another First

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.