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At Lunch Yesterday

Kate asked, “What’s my name?” I told her. She didn’t ask any follow up questions. A little while later I mentioned that we would be going out for pizza last night and told her the name of the restaurant. She said, “You’re my brain.” Then she laughed and said, “And, I really mean it.”

These are not just examples of her dependence on me but also recognition of it. In her hour-long conversation with her church friend yesterday, I overheard her telling the friend how much she relies on me. I am always encouraged when I see signs that she can still accurately interpret what is happening around her. I don’t mean to say that her awareness extends to a lot of things, but I take satisfaction in her ability to read the social situations. That’s good.

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The symptoms of Alzheimer’s are intertwined with many good times.

I couldn’t have understood seven years ago how well Kate and I would be able to get along this far into her Alzheimer’s. That isn’t because of any lessening of the changes the disease is bringing into our lives. It’s because I didn’t fully grasp that Alzheimer’s doesn’t affect every aspect of a person’s life until very late in the disease. Discovering this has been an unanticipated blessing.

My own lack of understanding is not unique. What most of us think about when we hear of a person with dementia is the end state. There is a image of people we have seen in nursing homes who have lost virtually all of their abilities. For most people with dementia there is plenty in life that can be appreciated even when memory is gone.

For us, yesterday was a good example of that. Kate was able to enjoy conversations with friends and the pleasure of music. An observer would never have suspected that she didn’t know where she was (either the city or the restaurant), what day it was, the time, the name of her favorite entrée she had, or the names of the people with whom she conversed. Yet, she was happy, and I was just as happy.

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Music Speaks Again

As expected, opera night at Casa Bella was outstanding. The two singers were unusually good. I don’t mean to take away from the singers we normally have. They are graduate students from the music school at UT. Last night, the soprano and the baritone have sung with opera companies in Europe. As you might expect, they were truly outstanding. The crowd, including Kate and me, loved them.

It had been three weeks since we had been together with the couple we sit with regularly. It was good to see them. Two other people sat with us. We had known each of them from other places around town, so it was also a nice social occasion as well. We also saw several other people we know from other musical circles.

Once again, the power of music spoke loudly. With all the changes that Kate is experiencing lately, music still has great impact. I am optimistic that it will be with us for a good while to come.

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A socially active day, and it’s not over.

I knew this was going to be a full day, but it’s turned out to be more than I expected. That’s good news. We had a very nice lunch with Angela and Marvin Green who are members of our church. It was an unusually good social experience for Kate. Normally, when we are with another couple, almost all of the conversation is among the four of us. We had some of that today, but there were at least two times when Kate and Marvin were engaged in their own conversation while Angela and I did the same. Kate handled herself well and was quite talkative. I couldn’t help wondering how much of what she said was actually true, but it doesn’t matter. She was having a marvelous time. Angela asked what they could do for us. I told her that going out to eat together was the very best thing they could do. It really meant a lot.

After we returned home, I received a phone call from another church friend. She and Kate became friends when Kate served as the volunteer church librarian. Martha wanted to know if she could drop by to visit with Kate. I told her that would be fine. When Martha arrived, I told them I was going to let them visit and went to the kitchen which doubles as my office. I couldn’t hear what they said, but they never skipped a beat in their conversation. I don’t know who was happier, Kate or I.

It is a very rare event for Kate to have the opportunity for the kind of one-on-one conversation she had both at lunch and this afternoon. We are going to opera night at Casa Bella in little over an hour. That is always special, but I feel sure the two social experiences she has already had will be the highlight of this day.

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Little Things

As we were getting our things together to leave for Panera this morning, I told Kate that I would get her iPad if she would get her cup. This is a fairly routine moment each day. The exception is when she is in a hurry. Then she goes directly to the car and waits for me to get everything. For the second day in a row, she couldn’t think where the cups are located. I don’t every recall her having that experience before. At various times during the day, she frequently goes to the cabinet and gets a cup. It’s a little thing but another marker in her journey.

When we pulled out of the driveway, she said, “What is the name of this street?” That is the first time she has asked that. Based on other things she has forgotten, I suspect she has had trouble remembering the name of our street for quite a while. Then she waved to the neighbors’ houses and said, “Bye, whoever you are.” That is a very common thing for her to do. She hasn’t remember their names for a long time. I find it cute the way the way she says it. She intends to be funny. She doesn’t think either of us knows their names. She sometimes says, “Bye, even if we don’t know your names.”

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A Surprise, But a Good One

Kate and I were sitting in the family room before leaving for lunch. As usual, music was playing on my audio system. This time it was a John Galway album. She said, “I love that song.” I said, “I do too, but I can’t remember the name.” She said, “Beauty and the Beast.” I said, “You’re right. I’m surprised you could remember that.” She laughed and said, “I am too.”

It has been many years since she saw the musical, and this is not an album I have played a lot. I am amazed she could recall the name. As she sometimes says, “Don’t count me out yet.”

It’s another reminder of the power of music.

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Taking Stock of Where We Are

Once in a while I like to ask myself how I am feeling about the way things are going. Right now, I would have to say that I am not as upbeat as I have been in the past. Kate is changing, and I am changing along with her. What is most encouraging is that we are still active and enjoying ourselves. On the other hand, she is finding it even more difficult to perform certain tasks that before.

A good example occurred yesterday at Panera. She was working a puzzle on her iPad and got stuck and asked for my help. When I looked, I could see that all but two pieces of a 16-piece puzzle were in their proper places. She thought she had put the other two in their right places. She couldn’t see that a little of the background was showing around the edges of each piece. She also didn’t notice that the images on each piece did not fit where she had put them.

To help her, but not do it for her, I moved the two pieces to the side. That left two vivid orange spaces begging for the right pieces. I not only placed the pieces to the side, I put one above the other that would match the location of the appropriate spaces. She struggled trying to figure out which piece went where. I don’t actually I know if she got them. I tried to look, and she blocked my view. She may have just started over. One of the surprising things is that she placed the first 14 pieces in their right places and does so all the time. I know from past observation that she works very slowly and goes through a trial and error process.

When I see the trouble she has with her puzzles, it isn’t surprising that she is having difficulty getting dressed and undressed. Both of those tasks demand a lot of time and also trial and error.

I attribute her increasing dependence on me as well as her compliance as a direct result of her recognizing that many tasks are becoming difficult. I still don’t see any signs that she is frustrated or emotional in anyway because of these challenges. I do see looks of bewilderment, but that’s it. I am taking that as a good sign, but I don’t like seeing her work so hard to complete such routine tasks.

It is clear to me that from an emotional standpoint, I am the one who is facing challenges. For the first time in my life, I have experienced anxiety. It is evidenced in my forgetting things that I would normally remember. Yesterday, for example, our sitter told me she would not be able to come on Friday. She asked if the agency had told me. I told her they had not. Later I spoke with the agency. The person with whom I spoke said she had told me last Friday and that they are sending the sitter who comes on Monday. I had completely forgotten it. I also find that I am waking up at night and having trouble getting back to sleep, something that rarely happened in the past.

Fortunately, we are still getting out. That provides both of us the kind of stimulation that we need. We are having lunch with church friends today. Tonight we will be at Casa Bella for opera night. We have several out-of-town visits with longtime friends. This Saturday we will lunch with the Robinsons in Nashville. After that, we will visit Kate’s best friend, Ellen. We’ll be back in Nashville next Tuesday for a visit with the Davises. The following week we will also visit with the Greeleys. Since all of these friends live in the Nashville area, you might think it would make sense to make a single trip and stay a few days. In some ways that is right, but doing it in multiple trips prevents Kate from having too much social contact in a single time frame. That wears her out and can be confusing for her. We avoid that by taking multiple trips and spread out the pleasure. It makes each trip a little more special.

Let me close by saying once again life is changing. It is more challenging in variety of ways. At the same time, we are actively engaged in supportive activities and happy about our lives. We are far better off than many others who are making this same journey. We continue to be grateful and wish that everyone could be so lucky.

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Eating out still works for us.

Last night we ate at Bonefish Grill, a place we have frequented more often recently. During our meal, I didn’t see anyone that we knew which is a little unusual. As we got up to leave, we passed by a couple whom we have known through the Knoxville Symphony. We chatted with them a little bit. Then I noticed a hand waving to me from another table. It turned out to be a former neighbor and her husband. We hadn’t seen them in a while. We must have had a ten-minute conversation. After that we saw a fellow Rotarian and his wife whom we also see at some of the music nights at Casa Bella.

We left having had a good meal and another social occasion. It didn’t require anything special on Kate’s part or mine, but it was the kind of thing that provides a little boost in the day. I am glad to say that we have many of these at meal times. While there are a lot of good things to be said about eating in one’s own home, in terms of our personal needs, eating out is just what the doctor ordered.

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Unusual Behavior Continues

Late this afternoon, I decided bring Kate’s extra clothes from the car. They included the the pair of shoes she had taken with her yesterday as well as the robe, night gown, shoes, socks, and the baseball cap. It was then that I discovered a pair of garden shoes she sometimes wears, and another 4 pair of socks. I was especially glad to see the socks as they seem to disappear over time. From time to time, I discover them in various places around the house, often just one sock.

As I would putting a pair of underwear back in its drawer, I noticed something that is not unusual (at least any more). All of the underwear I had carefully folded after washing them on Saturday were all messed up. Not a one was left undisturbed. As I say, this happens after every time I wash. Another unresolved mystery.

After coming home from dinner, Kate went brushed her teeth. She took much longer than I had expected. When she came to our bedroom, she was carrying a stack of books. One was on grandparents. Another was a book of editorial cartoons from our local paper. She also had a kaleidoscope that her brother, Ken, had given her quite a few years ago. It is made in the shape of a old airplane. She hadn’t remembered that it is a kaleidoscope. She put all of them on the night table beside the bed.

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More Unusual Behavior

When Kate was ready for Panera this morning, she was carrying a night gown, a pair of pants, and a pair of shoes and socks. To be clear, these were in addition to those she was wearing. On the way to the car, she picked up a baseball cap and took it with her. She left the clothes in the car but brought the cap inside with her. She hasn’t put it on. It is just sitting on the table.

Yesterday she had an extra pair of shoes with her. I asked if she were going to take them with us. She said, “I might want to change.” Once in the car, she did change. The others are still there. She and I forgot to take them in last night. Now we have two extra pair of shoes.

There are so many things like this that those of us without dementia can’t understand, but they must make sense to her.

Postscript at 2:30 p.m.

I am at Whole Foods waiting for Kate who is getting her monthly facial. I thought I would add something to my earlier post. We came back to the house after lunch. We had just enough time for a short break before leaving for the spa. When I went to the back of the house to see if she were ready, I noticed that she had put on another top over the one she was wearing earlier. She had a pair of underwear in one hand and another top in her other hand. She held the underwear up and looked at me as if to say, “Should I take these with me?”  I told her I thought she could leave them. Then she held up the top. I told her I didn’t think she would need that either. She left both of them without questioning me at all. Apparently, she was just wondering if she should take them. I answered her question, and that was that. What will remain unknown is what made her wonder about that in the first place. So many mysteries.