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Just an Ordinary Day. That’s Good.

Kate got up a little later yesterday morning. We didn’t get to Panera until just after 11:00. By that time most of the morning crowd had gone. There was only one man in the area where we sit. He is someone we see periodically. We chatted with him briefly, and Kate had her muffin while I finished up my earlier post.

From there we made our regular visit to Carla’s for lunch. It was especially crowded and, thus, a little noisy. Several of the regular staff have not been there during the past few visits. That has made a little difference in how I have felt about the place. It’s been a reminder that it is not just the food that is important. We liked our server and would be happy to have him again if one of our regulars is not available. As always, our food was good. We also saw our pastor who was having lunch with another church member. We had a nice conversation with him. Before leaving, the man who owns the building across the parking lot from my office walked in. We talked briefly with him as well. So as it turned out, we had a good meal while enjoying brief conversations with people we know.

When we got home, we had almost an hour before both of us had appointments for haircuts. Since Kate’s hairdresser retired about five years ago, we go to the same person. That’s a nice convenience. During our time at home, I put on my album of Les Miserables. After seeing how much she enjoyed the DVD, I was curious to see how she would respond to the audio version. I can’t say that it had the same impact as the DVD. Visuals really do make a difference. However, she was quite taken by it. She had been working on her iPad, but put it down on several occasions just to listen to the music. I can’t fully express the pleasure I get in seeing her respond this way. I love sharing the music with her.

When we returned from getting our haircuts, we sat in the family room and listened to more music until time for dinner. I selected a number of things that I knew she would like. I have an album of the Susquehanna Chorale singing several songs she especially likes, Danny Boy, Shenandoah, Loch Lomond, and Swing Low Sweet Chariot. I looked over at her and saw that she was softly singing with the music. Once again, I could see the power of music. As a result of my reading Judy Cornish’s The Dementia Handbook, I have a better understanding why.

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Follow-Up on Dependence

Yesterday when I returned home to relieve the sitter, Kate was resting on the sofa in the family room. I walked Anita to her car to find out how things had gone. She said they had had a good day. She had met us at Panera but she said they didn’t stay long after I left. I was pleased to hear her say that they had spent a long time going through the photobook that Kate’s brother had made for her. She said that Kate enjoyed telling her about all the people in the pictures. This made me especially happy because I had been concerned that Kate was not enjoying her time with Anita as much as she does with Mary.

Anita told me that Kate had asked about me a couple of times, wondering when I would be home. That is the first time Anita has said anything like this. I took note because Mary has also mentioned Kate’s asking about me. Kate had wanted to be home when I got there. These are little things and may have no significance, but I think they are consistent with her increasing sense of dependence on me. It is more than just the things I do for her. From what she tells me, she just feels better when we are together.

After Anita left, Kate continued to rest a little longer. Then she was ready to go out. We went to Panera. We had been seated for about fifteen minutes, when she said, “I like Panera.” Then she commented on the general atmosphere and the people who were there. She continued working her jigsaw puzzles on her iPad. In a few minutes she stopped. She said, “I like being here with you.” I said, “I’m glad. I like being with you.” As she often does, she moved her lips to say, “I love you.” At the same time, she brings her index finger to her lips and then points to me. Then I said, “We’ve done many special things over the years. Many of them, like being together at Panera, have been ordinary things, but they’ve been special to us. And we’re going to have many more.”

I still see signs of Kate’s desire to be independent. At home after dinner, she brought out clothes for her to wear today. She had a pair of pants, a top, underwear, 3 pair of socks, and 2 pair of shoes. She does this once in a while. I take it as further recognition that it is confusing to get her things together at the last minute. This way it’s done for her when she wake up. Her dependence on me is even reflected in this simple act of preparation. She asked me to check her and make sure she had everything. I assured her that did. Moments like are very touching.

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Remembering Mom

Today is my mother’s birthday. She died in 2002, four years after her doctor told us she had dementia. I remember how carefully she presented the news. There was no problem for my dad and me. We had recognized it for some time. I wish I could remember how long we had known. Looking back, I suspect Dad was aware of it when they moved to Knoxville in 1994. He had been having his own health problems. I suspect he may have been concerned about what might happen to her if he were incapacitated. I’ve had similar thoughts about myself although I’ve been fortunate not to have had signs of health problems.

Two things I do remember. One is that Mom used to comment on her poor memory. She frequently said, “I don’t know what’s wrong with me. I can’t remember anything.” In the early stages, I just thought it was a natural part of her aging. That’s what I thought about Kate as well. Of course, that really is the most likely diagnosis. It takes a while to recognize that it is much more than aging.

The second thing I recall is that Dad kept her busy. I thought he was just getting acquainted with a new city. It was that, but now I think it was more. They were active in a local senior center and worked as volunteers helping with the center’s mailings. I remember Mom’s opening an envelope from the center and showing it to me. She was so excited to receive it. She hadn’t remembered that she had helped with the mailing a day or two earlier. They also delivered Meals on Wheels. Dad may have been doing what I do with Kate, trying to keep her brain stimulated as much as possible.

My mom and dad were also fortunate that she had no special complications along the way. She just gradually lost all her memory. Many with dementia die of other causes. I would say she died from the effects of dementia itself. She finally reached the point at which she could no longer eat or drink.

Dad was a devoted husband and care partner. He cared for her with minimal help. The only regular help he had was from an adult day center where he left Mom on Wednesday mornings while he went to Kiwanis and then to the grocery. My brother, Larry, and I tried many times to bring in help or to move them to assisted living. He was very resistant to say the least. In the end, he did it his way. Mom slept in the same bed with him until a few days before she died. I recall Dad’s telling me that he tied a string from her wrist to his so that he could tell if she got up at night. That has much more significance to me now.

Two or three days before Mom died, Dad was turning her every two hours. His last time was about 2:00 a.m. He woke up at 5:00, and she was gone. She died peacefully without any pain and without the help of pain medication.

Mom always loved her boys. She thought Larry and I could do no wrong. Even  after she forgot who I was, she often said, “You’re a nice boy. You always were.” That’s something else for which I am grateful.

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Surprising Memories

Kate’s memory has declined so much over the past few months that I am surprised when she remembers almost anything. That happened twice yesterday. The first occurred on our way to lunch. Only minutes after asking me the city we were in, she said, “Madison (WI) changed my life.” I was surprised for two reasons. First, that without my saying anything to prompt her, she remembered Madison where we had spent three years while I worked on my PhD at the University of Wisconsin. Second, that she was able to express a truth about our time there. It changed both our lives in significant ways. The first two years she worked as a secretary to the director of graduate admissions in the English department. He was an outstanding scholar, and Kate had an undergraduate degree in English and had completed all but her thesis for her master’s in English. She came in daily contact with professors that were well-recognized for their contributions to English literature. She was in heaven.

The other memory occurred after lunch. At Carla’s we have a single scoop of salted caramel gelato each week. We love it. For Kate each week is like the first time she’s ever eaten it. That was true again yesterday. She raved over it while we were enjoying it and after it was gone. Time passed as we got our check and paid it. Then as we walked toward the car, she said, “That was the best ice cream.” That may not seem unusual, but it really surprised me. She’s never commented like this about anything we’ve eaten before. It obviously made an impression on her. When we were almost home, she again mentioned “the ice cream.” I was doubly surprised and happy. It is very special when things like this happen.

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Feeling Grateful on Father’s Day

When we get to a certain age (not sure when that is, but I must be there), we begin to reflect a bit on our lives, people we’ve met, things we’ve done, places we’ve been. That takes us to how we feel about ourselves. When I do that, I always think of one word that sums it up for me – Grateful. Yes, I am grateful for many things.

I’m grateful to be alive. When I was twelve and some time thereafter, I thought 60 was very old. I knew that I would never live that long. That bothered me because I wanted to live to see the turn of the century. When I was older, I no longer worried that I wouldn’t make it. I was still here. When my dad celebrated his 100th birthday in 2013, my optimism about my longevity took a leap forward. Now it’s 2018, and I don’t believe I am likely to depart this world anytime soon. I am very mindful, however, that life is uncertain. Kate’s diagnosis with Alzheimer’s in 2011 keeps that in the forefront of my mind, but I am very grateful to be here today and enjoying life.

Since it is Father’s Day, I also feel grateful for my dad. Although I never remember his giving me any advice or admonition about making the most of life, he was a significant role model for me. He had a much harder life as a child than I did yet he never complained. He was always optimistic. I could tell by observing how he dealt with problems that he saw life as involving recurring challenges. His job was to figure out how to conquer them. He loved life and the people he encountered along the way. They loved him back.

Kate and I are both grateful for our families. That includes our extended and immediate families. We have two children who have successfully found their places in the world and are raising children that we expect to do the same. Kate and I want to minimize their responsibilities in caring for us, but I know there will be plenty near and at the end of our lives. I am especially grateful for our daughter’s and son’s skills and sensitivities about the aging process. We will be in good hands.

I am grateful for the opportunities I’ve had to experience the world. That began with educational opportunities but extended to life experiences in different places with different people. I never imagined what lay ahead of me when I left for college. Those experiences have had a tremendous impact on my view of the world.

Many people have influenced my life. Of course, that would include teachers, but goes much further to include people I have studied with, worked with, played with and encountered in brief encounters in everyday life as well as international travel.

As I think of people who have been important to me, I naturally think first of my partner in life, Kate. We’ve often talked about how unlikely it was that a beach boy from Florida would meet up with a Texas gal almost 1500 miles away. We came from very different kinds of families and backgrounds. It turns out that we have shared values and interests that have lasted us a lifetime. My dad couldn’t understand why I wanted to go so far away from home when there were plenty of good colleges and universities in Florida. I loved my family, but I am glad I left for a new adventure. My mom said, “You’ll go out there and meet a Texas girl and never come home again.” She and I were both right. It worked out well.

Kate’s diagnosis with Alzheimer’s wasn’t in our game plan, but we quickly decided we would make the most of our time. I am satisfied that we have done that, and we’re not finished. Even as her memory fades, we are enjoying life and each other. She lives in the moment, and I am living with her. That is what I am most grateful for this Father’s Day.

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Expecting a Good Day

Good morning. It’s a beautiful morning here. I hope it’s the same wherever you are. I slept a little later this morning (6:00) but still got in a morning walk. While walking I finished listening to Bradbury’s Dandelion Wine. It’s been around a good while, but I had never read it. My friends Tom Robinson and Bruce Morton had recommended it to me. Great recommendation. One of the best books I’ve read in a while. The balance of the walk I started Hemingway’s The Sun Also Rises. I thought this was one I had read as an early adult, but I don’t remember a thing. I Know that I read a couple of his books long ago and liked them.

We had a good experience with the sitter yesterday. On Monday, Kate seemed less enthusiastic about her time with Anita. Most of the time I don’t tell Kate I am going to be going out until just before the sitter arrives. Yesterday I told her at lunch. It didn’t appear to bother her at all. About fifteen minutes before Mary arrived, I told her again that I would be going to the Y and that Mary would be with her. Once again, she seemed fine with that. She expressed no reservations at all. When Mary arrived, Kate greeted her as warmly as ever.

When I got home, they were both sitting in the family room. They had been to Panera though Mary said they didn’t stay long. She said that Kate wanted to come back home to see if I had come home. Although that may have been a sign of wanting to see me, it did not appear that Kate had been disturbed at all that I had been gone. After Mary left, Kate commented on how nice she is and what a good driver she is. Now I am eager to see what happens with Anita on Monday.

Over the past ten days we have had an unusual amount of time with old friends. Kate and I have enjoyed that. Today is bound to be another good one. The Greeleys from Nashville are coming in for the afternoon. They’ll be here for lunch.

The couples we’ve seen recently led me to think about our very closest friends. There are five couples. We have known them for more than fifty years. (Scott Greeley, who will be here today, and Kate have known each other since infancy. I know there must be others, but that’s the longest-lasting friendship among any of the people I know.) Each couple has been married over fifty years. All of the men have been college profs though two of us found a home in the business world. We come from very similar religious backgrounds and we share similar religious and political views. All of these ties make for very special times when we are together. Today will be another good day.

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At Home to Replace the Sitter

Today was my day to donate platelets at the Red Cross. When I got home, the first thing the sitter said was, “She is so smart.” I said, “I know she is.” Then Mary explained why she said that. She told me that she was watching a TV show with a judge in a courtyard scene when Kate said, “That’s not right. It’s . . .” My Kate, always the English teacher, had corrected the grammar used by someone on the show. Mary added, “And she wasn’t even watching the show. She just heard it.” I told her our grandchildren could tell their own stories of being corrected by Nan. Then she said, “Last week, she corrected me.” I didn’t tell her I have been corrected quite a few times over the years. I love knowing that she is still able to detect errors in grammar.

After Mary left, I walked over to Kate. She said, “I’m so glad to see you.” I said, “I’m glad to see you.” Then she added, “I really mean it. I feel so much better when you are here.” When I had walked in the room, it sounded like the two of them were getting along fine. I said, “But you like Mary, don’t you?” She told me she did, but “it isn’t the same.” I gave her a hug, and she said, “I really mean it.” One of the many things for which I am grateful is that Kate is so loving and appreciative. That strengthens my desire to be the best caregiver I can be. She makes it easy.

After that, she said she wanted to brush her teeth before leaving. As usual, she didn’t even ask about going out, she just assumes when I return we will leave together. So far that is what we have done every time I have come home after the sitter has been with her, never because I initiated it.

In a few minutes, I heard her call me from the back of the house. When I reached her, she said, “Where are we staying tonight?” I told her we were going to stay “right here in our own home.” She said she thought so. I walked back toward the kitchen and heard her call again. This time she pointed to a tube of toothpaste and her toothbrush and asked (using hand signals) if she should bring them with her. I told her I thought we could leave those at home. She said, “I thought so.”

When we got in the car, she asked, “Where are we right now?” I told her we were at our house in Knoxville.” Once again, she said, “I thought so.” She may have, but I know that today she has asked that quite a few times. Obviously, she is not sure. As I have said before, she doesn’t show any signs of frustration when she asks. She seems to be adapting well. Something else to be grateful for.

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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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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.