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Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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The Rest of the Story

After leaving Panera yesterday afternoon, we went directly to Casa Bella for their monthly night of jazz. It was a little different last night. The couple with whom we normally sit were unable to make it. We joined another couple who only come for the evening of jazz and not opera or Broadway. We have sat with them several times but are not as well-acquainted with them. They are a very interesting couple, and both are talkative. That works fine for me, but I’m afraid Kate was left out of most of the conversation. On the positive side, I know that she enjoyed the music.

The best part of the day turned out to be after we got home. Before we left the house yesterday afternoon, she asked me (in sign language, of course) if she should take two of her photobooks with us. I suggested that she leave them home, that she wouldn’t need them at either Panera or Casa Bella. When we got home, she picked them up from the coffee table in our family room and took them back to our bedroom. While I took a shower and got ready for bed, she started going through the photobook her brother Ken had made for her. She took a lot of time carefully looking at the pictures on each page. Frequently, she would call my attention to one she particularly liked. I was encouraged to hear her mention the names of her various family members in the photos. I like knowing that she hasn’t completely forgotten their names. This really is a gradual process, but I notice little differences like having increasing trouble remembering my name as well as her own.

I ended up getting in bed with her, and we both looked at some of the album together. In a little while, she was sleepy. We decided to put away the book and call it a day. I am glad to say it ended on this high note. I had expected jazz night would do that. As it turned out, it only set the stage while her family photos became the main event. I was relieved the day ended so happily, without any more signs of confusion.

I am also glad to report that Kate was up a little earlier this morning and in a cheerful mood. We’re back on track (and back at Panera).

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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.