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Feeling Good About My Decision to Move

Tomorrow it will be two weeks since I made a deposit on an apartment in a local continuing care retirement community. That gives me another two weeks before I either have to back out and get my deposit back or move forward with a full down payment. At this point, I still feel good about my decision and doubt seriously that I will change my mind before the down payment is due.

For ten years, I taught a Sunday school class of seniors that were mostly ten or more years older than I. During that time quite a number contemplated such a move and found it a hard one to make. I understand that, but I have felt quite differently about it. When Kate was first diagnosed, I had my personal preferences regarding her care. I wanted to keep her at home, but I also felt I should keep all my options open. I have not changed that position. After all, there was, and still is, no way I could predict what our circumstances might be like in the years ahead.

Kate’s diagnosis changed a lot of my thinking. The first was that I immediately began to reinterpret everything she was doing. I finally understood her behavior was result of her Alzheimer’s. That made me significantly more understanding. It also placed her care at the center of my life. That doesn’t mean that I gave up doing all the things l like, but it did mean that everything I have considered doing since then has taken her care into account. Until the past six to eight months, I’ve been able to do that by focusing on things we can do together and engaging a sitter to give me twelve hours a week for myself. As she has declined, I’ve been increasingly concerned about what would happen to her if something happened to me. I don’t have any existing health issues, but Kate and I are at about the same as our parents when they began to show signs of diminished health.

Thus, my decision to explore a CCRC was heavily motivated by a desire to establish a plan for Kate should I experience a major health problem. I am happy to say that I immediately felt better when I put down a deposit. Even though the new building won’t be ready for almost two years, we will have access to other benefits of the community like the adult day care, assisted living, or memory care. In other words, my decision has opened up another set of options that were not previously in place.

But that isn’t the only reason I feel comfortable. For many years, Kate and I have felt we wanted to make life as easy as possible for our children as we age. I believe taking this step accomplishes just that. We had already taken some steps to make them aware of what they would need to know if one or both of us were to die. They have all of our financial, medical, and legal information as well as the contact information they would need. I feel that moving to a CCRC would be an added measure of security for us and for them.

There are several other things that were also relevant. I had already decided I didn’t want to remain in our house after Kate is gone. I don’t enjoy all the things that are required to care for a house and lawn. I can hear my friends saying, “Wait a minute, don’t you already have a housekeeper and people who take care of the yard?” That is true, but they don’t do everything that needs to be done. Besides, I still have to manage everything. I would rather have someone else do that for me even if it isn’t done exactly as I would like it or on my time table. My dad lived to be 100 and was active until his stroke at 96. I, too, want to be active. Having an apartment rather than a house will allow me to focus on other priorities.

I doubt that I would have made the decision if there had been an available apartment when I sought information. As it is, I have time to get ready. It gives me two years to close the home we have lived in for twenty-two years. The fact that the building is two years away also gives me plenty of time to reconsider my decision. I feel secure, but not locked in.

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Reflecting on Ken and Virginia’s Visit

Visits with friends and family have always been important to Kate and me. That’s true for most people; however, they have played a more significant role for us since Kate’s diagnosis. I’ve been especially mindful of that during Ken and Virginia’s visit with us the past few days. I hated to see them go. The fact that Ken was diagnosed with Alzheimer’s almost five and a half years ago has heavily influenced our relationship. It’s not that we talk a lot about dementia itself. We don’t do that at all in Kate’s presence since she no longer remembers that she has the disease. I don’t see any reason to tell her. We do, however, have such conversations before she gets up and when she rests.

What is more important is that they have such a clear understanding of what this journey is like. They may have picked up a few things from reading this blog, but most of that comes from their own personal experiences. That makes a difference in our interaction when we are together. When they are here, I have a feeling the three of us are partners as caregivers for Kate. They understand how to relate to her in a way that is difficult for just anyone else to do. I feel a load is taken from me. I still get her up and see that she is dressed and ready for the day, but when we are together, she interacts with the rest of us. The fact that we share a common set of experiences as part of the same family is also important. That expands the range of topics we can talk about in ways that couldn’t happen with even our closest friends.

Ken himself has taken steps to remain close to his sister. One of the best things he has done is to have given her the “Big Sister Album.” With 140 pages of photos covering their lives from Kate’s birth to January 2018, it has provided countless moments of pleasure for Kate since he gave it to her a year ago. We keep in on a coffee table in our family room. The cover photo of her and Ken when they were about four and two catches her eye almost every day.

Because it contains so many memories of their lives including their extended families, Virginia and I have enjoyed letting them take some time just to themselves to go through it. They looked at it for almost an hour yesterday afternoon. After dinner last night, they went through it again. This time Virginia sat across from them. When they had finished, Kate put it down. Then Ken said something about the cover picture. She didn’t know what he was talking about and showed her. She didn’t remember who the children were. Ken told her. She seemed confused about Ken in the photo and Ken sitting beside her. It didn’t appear that she remembered that they are the same person. As they moved to other photos, she did refer to Ken by name. I was never quite sure what she understood and didn’t.

As Kate continues to decline, there is another aspect to visits like this. Will this be their last visit together? None of us expects this to be the last, but we don’t know. Ken and Virginia are planning to return in the fall. How will Kate be getting along then? She won’t be the same . How will that affect our time together? Like so much of this journey, we just don’t know. All four of us are living in the moment. One step at a time. That has served us well thus far. I trust that it will in the future. In the meantime, I will savor the memories of a very pleasant visit. I wish Kate could do the same, but she enjoyed the moments.

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The Fickle Nature of Memory

The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?

By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.

As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.

All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.

My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.

Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.

Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”

As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.

I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.

In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.

I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.

Richard:        “That is your Nana, and look who she’s with.”

Kate:              “Me.”

Richard:        (Pointing to Ken) “Who else is there?”

Kate:              “And who’s that?”

Richard:        “That’s Ken.”

Kate:              (Very excited.) “That’s Ken? My brother.”

Richard:        “Yes, your brother.”

Kate:              (Chuckles with excitement like a little child)

Richard:        “Now who do you think these three are?”

Kate:              “I don’t know.”

Richard:        “Those are you.”

Kate:              (pointing) “That’s me?”

Richard:        “Each one of those is you.”

Kate:              “That one too?”

Richard:        “That’s you on a tricycle.”

A Page Later

Kate:              “Oooh. That’s wonderful.”

Richard:        “Who do you think those people are?”

Kate:              “My daddy and me. . . Look each one is happy, especially me.”

We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.

I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.

I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.

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Kate’s Feelings about Things that Require “Rational Thought”

I have commented many times about the fact that people with dementia lose their rational thought processes. They gradually lose their memory of names, places, and procedures. On the other hand, they retain their intuitive abilities. They are able to enjoy music, beauty in nature and art, eating favorite foods, and socializing with friends and family. Kate and I have gotten along happily by focusing on her intuitive abilities and have minimized the importance of the rational ones that have diminished so greatly. Over time, I have begun to notice an interesting intersection of rational and intuitive thought and have been struck by this connection. Let me give you a few examples.

At lunch earlier this week, Kate and I talked about a friend of mine. She asked where he lives. I told her Columbia, South Carolina. She was curious about the name and wondered about its origin. I told her it was named after Christopher Columbus. She said, “Who is he?” I explained that he is often thought of as the one who “discovered” America. She was puzzled. That led to my trying to explain his attempting to find the East by sailing west. I mentioned that people used to think the world was flat. As you might expect, she was quickly overwhelmed by information and asked me to stop. Her rational thought processes were unable to absorb what I was telling her.

We had a similar experience another day this week. She said something funny. We both laughed. Then I said, “You can really be funny. I’ll be your straight man. We could put this show on the road.” I got a puzzled look. I could tell she didn’t know what I meant by “straight man.” Then I tried to explain it. I didn’t get very far at all. I told her about comedians who worked in pairs and that one would appear to be more serious and would say things to prompt the other person to respond with something funny. Then I foolishly mentioned Abbot and Costello, George Burns and Gracie Allen, and Dean Martin and Jerry Lewis. Naturally, she didn’t remember any of them. I told her we would look at some YouTube videos to help her understand. That diverted her attention, and we went on to something else. The important point is that she has an intuitive sense that leads her to want to know the answer to a question her rational thought can’t handle.

The jigsaw puzzles she works on her iPad represent the most relevant example in our lives. She loves working her puzzles. She often asks me what she can do after we come home from lunch, dinner, or other outing. I give her the same choices almost every time. No matter what options I give her she almost always chooses the puzzles. Once she starts them, she inevitably runs into a problem. Every problem arises from a failure of her rational ability. One of the most frequent ones is getting stuck in the store to buy more puzzles. There is a small green button with a shopping cart in the upper right-hand corner of the screen. She frequently touches it instead of the button that will take her to select the next puzzle. Similarly, when she is on the screen with the choices for her next puzzle, she often forgets that all she has to do is touch the puzzle she wants to work. She often asks me how to get to the next puzzle. Other times, she chooses the “Store” button instead.

This can be frustrating for her. She wants another puzzle, but she can’t remember how to get it. In other words, her intuitive thought exhibits a feeling of desire for a puzzle, but her rational ability doesn’t function well enough to do it consistently.

Another incident illustrates this intuitive desire to know without the rational ability to remember. Not long ago, she couldn’t remember my name. I said, I said, “That’s not important. You know who I am.” She quickly responded. “It is important. I should know your name.”

Now let me return to my comment about an intersection of rational and intuitive thought or abilities. It has been almost a year since I first read The Dementia Handbook in which the author, Judy Cornish, defines these concepts and explains their relevance for people with dementia and their caregivers. When I first learned about these concepts, I thought of them as completely independent abilities unrelated to each other. I am now discovering that is not so.

My error was failing to recognize an important intersection between the two. Our intuitive thought leads us to get the answers to questions or problems. That’s something every parent and school teacher observes on a daily basis. Very early infants and toddlers use their intuitive abilities to explore the world. Think about a young child who picks up an object, looks at it, puts it in his mouth, and/or bangs it against the floor. In each case, he is learning something about the world around him. The curiosity of children always intrigues me. Everything is new. They have very little in the way of rational abilities and want to learn about everything. Our rational abilities develop over a lifetime, and much of learning involves our intuitive thought that tells us this learning is important or interesting or both.

Kate was an English teacher for three years and a librarian for the balance of her career. Like other educators, learning (and this means a lot of rational thought processes) is something she values highly. She admires and respects people who have achieved high levels of knowledge in any field of study. Even at this late stage of her Alzheimer’s, this feeling about knowledge is strong. She expresses it when she overhears a report on the evening news and wants me to explain it. The sad part is that she is no longer able to learn the way she did before. The surprising thing is that she isn’t frustrated all the time.

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Thoughts on Living Normally

A couple of days ago, I read a Facebook post by a friend whose 8-year-old-daughter has Down syndrome. She and her daughter were in Nashville to make a pitch to the legislature not to overlook children with special needs when it comes to the education budget. She talked about the importance of providing special needs children with as many “normal” educational experiences as possible. I am not an expert with respect to those with special needs, but what she suggests makes sense to me. That has been my approach to care for Kate.

Right after her diagnosis, we talked about how we wanted to spend our time. We agreed that we wanted to focus on the kind of things that were important to us before Alzheimer’s. We didn’t think of it this way, but what we wanted was to lead normal lives. We wanted to remain active for as long as we could. That involved travel, attending live performances, dining out, and maintaining contact with friends.

It has been eight years since Kate’s diagnosis, but we continue to be as active as possible. I suspect we spend less time at home than many people our age. We are reasonably active in getting together with other people for meals and outings like our trip to Flatrock Friday night. Just the social engagement we have with our servers at the restaurants we frequent provides a source of social contact and support. I am sure they would never imagine the contribution they make to our lives.

I wish I knew a way to assess the impact our social engagement has had on us. I am sure it has enhanced the quality of our lives and probably helped us maintain a positive outlook on life even at the present stage of her Alzheimer’s. My best guess is that Kate is just past the mid-point of Stage 6 of the seven-stage model. Life is changing, but we are still active and happy.

Over time, we have had to modify our activity. Our last international trip was four years ago in May. We love Chautauqua, NY, in the summer. We’ve spent at least a week there in each of thirteen summers, ten consecutive years until our last one in 2017. The past two years we have rarely gone to any evening events that start later than 6:00. Thus, we no longer attend the Knoxville Symphony. We have been able to continue going to live theater performances because they all have Sunday afternoon matinees. We rarely attend church on Sunday because it is difficult to get Kate ready in time. As I have frequently reported, we no longer make our daily trip to Panera for Kate’s muffin in the morning. We usually go straight to lunch. That has cut down on our social contact. Until ten-to-twelve months ago, we often spent more than six or seven hours a day away from home. That is now four to six at the most.

My background in sociology has made me sensitive to the variety of environmental factors that can affect us. That leads me to believe that my friend whose daughter has Down syndrome is making a good point that the value of living a normal life is good for her daughter and other people with special needs. To the extent possible, Kate and I have tried to live as we did before Alzheimer’s. I believe it has worked.

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Dementia and Anticipation

Our son Kevin and his family are coming for a visit tomorrow. Kevin comes about three times a year, but this will be the first time the rest of his family has been here in five years. That and the fact that our lives could be very different the next time they are here makes this one special.

Since I learned about their visit, I have periodically told Kate they would be with us. She is always happy to learn they are coming, but her memory doesn’t allow her to retain it. For the first time, I have been more mindful that dementia doesn’t just remove the past from one’s memory. It also prevents the joy of anticipating the future.

I don’t think I am alone in failing to think about this loss. I’ve read a lot of books by caregivers and people with dementia. I’ve also been in touch with a large number of others via social media, especially Twitter and Facebook. I’ve heard many stories about forgetting people, important events, and the difficulty with conversation because it depends so much on memory. They all deal with the past. I don’t recall any that dealt with the loss of the future.

Everyone derives pleasure from anticipation. The first thing that comes to my mind is my father’s excitement as he approached his 100th birthday. He started talking about it and making preparations as soon as his 99th birthday party was over. Our lives are filled with anticipation of things, big and small. – the birth of a child, a teenager’s getting a driver’s license, college graduations, weddings, reunions, vacations, anniversaries, weekends, starting a new job, moving to a new home, many different sources entertainment (concerts by a favorite singer or group, a popular Broadway play, the latest Star Wars movie), and visits with family and friends.

Looking back, I can’t recall when Kate lost this ability. I know it’s been a long time. I regret that she hasn’t been able to experience the joy of knowing she will see her grandchildren tomorrow or other special moments like our being at Casa Bella for music nights. I am glad, however, that she is still able to experience things in the moment. Those have been very important to us. In fact, they have made the difference in how I feel about the way things are going.

The ability to anticipate the future does not always bring pleasure. The only good thing about knowing Kate’s future, and that has been very important, is that it has caused us to make the very best of our time together. I am glad she is unable to anticipate or imagine what her life will be like in the days ahead. That’s something I don’t like to think about, but it’s hard to escape.

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A Thought about Dementia and Learning

I doubt that I am the only caregiver who frequently tries to teach something to his love one. One of the things caregivers are told is to accept the fact that people with dementia lose their rational abilities. That makes it difficult to remember names, facts, and procedures. That’s hard for caregivers to get that through our heads. Ultimately, I suspect that most of us do give up trying, but that can take a while. I think I am there now; however, there are some kind of situations in which I can’t resist. One of those involves Kate and her puzzles.

She has been working jigsaw puzzles on her iPad as much as six to eight hours a day for several years. In the past few months she has begun to have trouble. Sometimes she forgets what to do after finishing one puzzle or to begin a new one. Sometimes she looks at the scattered puzzle pieces and can’t remember what to do with them. When this happens, she asks for my help. Occasionally, she wants me to put the pieces in place for her. Most often, she wants me to solve the problem for her. That usually means getting her out of the store to buy more puzzles or to bring up the next one. Sometimes she wants help completing a puzzle. When this happens, I find myself giving her instructions. For example, I suggest that she locate the pieces that go along each border. That is difficult for her. To help I tell her to look for the pieces that have flat sides. When I do this, I am trying to teach her. So far, I have had zero success. This makes me feel that she can’t learn, but I was wrong. Here’s how I discovered that.

I’ve been putting drops in Kate’s eyes for the past three weeks. The first week or so Kate was frightened by my doing this. She frequently closed her eyes right before a drop went in her eye. After a successful drop, she usually said, “That wasn’t bad.” Other than those words, she had virtually no response to the actual drops. It was the anticipation that troubled her. I was beginning to dread giving her drops another few weeks when she stopped being afraid. Now when I tell her it’s time for her eye drops she isn’t afraid at all. She has obviously learned that it is nothing to be afraid of.

This does not appear to be tapping into her rational thought processes but her intuitive ones. I say that because she almost always forgets that she takes drops. When I tell her it’s time for her drops, she either asks why or puts our her hand for me to place a pill in it. She still doesn’t remember that she has had the surgery, and I have told her almost every time I have given her drops. This confirms the fact that she can’t learn what requires rational thought or ability, but she can learn things that depend on her intuitive thought or ability.

As I reflect a little more, I believe those who work with larger numbers of residents in skilled nursing and memory care facilities could tell many stories that illustrate this kind of learning. Having spent a good amount of time with my dad during his last 3 ½ years in a skilled nursing facility, I am well aware that there are many routines in places like that. There are regular eating times, times for activities, ice cream treats, and meds. Most residents fall into those routines quite easily.

I hadn’t really thought much about this before. Recognizing it strengthens my belief in the value of music and photo albums for Kate. It makes me think even more about the power of our relationship. I am only now beginning to fully appreciate what we have created together. I’ll give an example of that in another post.

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Three in a Row

The other day I mentioned one of the statistical measures related to my blog. The first three years following Kate’s diagnosis, I averaged 64 entries a year. In 2018, I had 549. That was up 232% from 2017 when I made 236 entries and 412% over 2016 when I made 133. I suggested that this increase was mostly related to the actual changes in Kate’s Alzheimer’s. I simply had more to write about.

In that post I also mentioned that I have a few other measures as well. The only other one I think is especially relevant involves the various categories to which I assign each post. I assigned the most, 246,  of the 1361 posts to the category “Good Things/Good Times.” That is 18.1% of all my posts and contrasts with only 62 (4.6%) I coded negatively (“Bad Times).

I should add that many of the other posts contain specific items that could have been assigned to either category. I chose, however, to assign a post to one of these categories when I thought the central message was either “Good” or “Bad.” I don’t intend to go back through all the posts and get a more precise measure of the ratio of “Good” to “Bad” incidents, but I suspect I would find the figure for each would be closer together. That’s because I have included many specific symptoms that I might want to consider negative. I believe the way I put posts in categories is a stronger measure of my “feelings” about the way things are going even with the negative things than happen all the time. Let me give you an example.

Yesterday Kate and I went to our usual Saturday lunch at the Bluefish Café. It wasn’t long after we took our seats that Kate asked, “What is my name?” When I told her, she wanted to know my name and then how we were related. This is the kind of conversation that has become commonplace. I suspect most people overhearing our conversation might interpret it as a bad thing, very sad. That’s the way I felt the first few times she was unable to remember our names. Even now, I view her memory loss as sad; however, I interpret the whole conversation quite differently. We were having a good time. There were things she wanted to know, and I was glad that I could be the one to tell her.

After we had eaten and paid the check, we had an especially tender moment. It started when she wanted to know her parents’ names. Then she wanted me to tell her something about her mother. We held hands across the table as I told her she had a very special mother and explained why I felt that way. I talked about her kindness to people and her years as a volunteer teaching adults to read. I also told her about her mother’s having taught Sunday school for almost forty years and what a good friend she had been to so many people. She loved hearing about her mother. When I paused, she said, “Did I get to know her?” I told her she did and that her mother loved her dearly. I reminded her of photos we have of her and her mother and that the love was visible in mother’s smiles. Then I said, “And the best thing is that when she was no longer able to take care of herself, you got to care for her during the last five and a half years of her life.” I told her about her managing a staff of paid caregivers, coordinating her medical care, as well as preparing meals. She was so happy, and, as so frequently happens these days, her eyes filled with tears. I was touched by her response. It does make me sad that her memory of her mother is virtually gone, but it makes me happy to know that her feelings for her are still alive and that I have the opportunity to fill in the details she no longer remembers.

If that were all that happened, I would say we had a very good day. As it turned out there was more. When we got home, she asked what she could do. I suggested we spend some time together in the family room. I mentioned her photo books and that she could look through some of them. I pointed to the “Big Sister” album on the table between our two chairs. She picked it up and sat down to look at it. I stood behind her as she flipped the pages and read the text for her and identified the people she did not recognize. She was entranced and went through the entire 140 pages. Her brother Ken will be glad to hear that this is a gift that keeps on giving. It is a gift to me as well. I enjoy the photos, but I am especially happy just being with her in such happy moments.

Yes, we’ve had three good days in a row. I guess you know the category in which I’ll file this one and why. <g>

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An Indicator of Change

Numbers have played an important role in my professional career in market research. The vast majority of the reports and presentations of research findings were filled with charts and tables containing lots of statistics. As a result, I have often yearned for a chart that would summarize our experiences since Kate’s diagnosis eight years ago.

That would have been possible if I had kept statistical records along the way. During the early years after the diagnosis, I didn’t even think of doing that. As time progressed, I felt I didn’t have time to keep an accurate statistical record. I settled for what we researchers call a qualitative approach. I simply describe in words what our lives have been like. Most people can relate to that more easily anyway.

The problem is that words don’t always convey the changes that occur over time. For example, I find that my early posts talked about how short her memory was. Some of my recent entries say essentially the same thing, and yet I know that her short-term memory is vastly shorter now that it was then. I do try to call attention to symptoms the first time they appear. I also try to give some approximate time indicators. For example, I often say that Kate’s sleeping pattern started changing during the spring of last year or the approximate number of months since the pattern started changing. For the most part, however, this blog consists almost entirely of my descriptions of our experiences.

Having said this, I have discovered that launching the journal as a blog one year ago has provided statistical data. Only one of those gives me much information that relates to our experience with Alzheimer’s, and it is very limited. The WordPress software I use organizes all of the posts by year. I put that together in the chart below. It doesn’t begin to do justice to what has gone on the past eight years; however, it does show how the progression of Kate’s Alzheimer’s has affected my writing.

During the first three years (2011, 2012, and 2013), our lives didn’t change much. I didn’t have as many things to write about. That began changing in the years 2014, 2015, and 2016. I remember that 2014 was the year I felt I should tell our children and close friends about Kate’s diagnosis. Early that same year, we went to New Zealand. I knew then that our traveling travelling days were numbered. It was becoming increasingly difficult to manage everything on long trips. We took our last overseas trip (Switzerland) in 2015. In 2016, I saw more signs of change. I believed that our annual trip to Chautauqua would be our last. Fortunately, we were able to make one more trip in 2017. That year I wrote 77% more posts than the preceding year. The big jump occurred last year. Our lives changed substantially as did the number of my posts. They were up 132% last year. Of course, that was the first year of my blog. I know I was more diligent in writing. Even with that, however, I have always tried to write when I had something I wanted to say (not necessarily what readers might want to hear <g>). In 2018, that happened more often.

So, what is in store for 2019? The answer is I don’t know. As in previous years that will depend on what happens next. If I were to guess, I would say that the posts will level out for a while and, possibly, decline. Through the first 36 days of the current year I am averaging one and a third posts a day. I expect that Kate will sleep more, and we will be less active this year than last. That might mean fewer things for me to report. As with so many things, time will tell.

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Melancholy Day

Yesterday was a different kind of day. The past couple of days I’ve had wonderful connections with friends and family that go back to my college days at TCU. In one case it went back to the fourth grade. At this stage of life hearing from people you have known over a lifetime is especially precious; however, there were aspects of each of them that gave me something of a melancholy feeling yesterday.

It began the day before when I tried to reach my childhood friend and neighbor and discovered she is in the last stages of dementia and unable to communicate with me. Then yesterday morning I received an email from one of Kate’s cousins. She had written a very touching poem as a tribute to her husband who was diagnosed with dementia and died in 2013. Yesterday was his birthday. It was a beautiful expression of her love for him. A little later in the morning, I read an email attachment from a college friend and widow of one of my college roommates who had dementia. It was a tender story of their lives together. My former roommate took up poetry in a serious way in his later years. She included a poem he had written to her on an anniversary in 1996. I am sure it meant a lot to her at the time and even more so now.

After Kate and I returned from lunch, I was surprised to see a package on our front porch. It was from another TCU roommate. We had been out of touch until the past six to eight months. He sent some autobiographical writings that he had prepared for his children. He was an outstanding singer in college, and we had sung in two different choral groups together, but I hadn’t kept up with his career at all. I also learned that he had lost his wife to cancer. Reading about his experiences summoned up feelings I often have at memorial services. It’s a feeling of “knowing” people but not really knowing much about them. I am glad to have connected with him now but wish that I had been in touch with him before.

Add Kate’s situation to this mix of connections. Her Alzheimer’s continues to take her in the only direction it can, and now she has a cold. My feelings for her are the same as those a parent has for a sick child. After lunch, we came back to the house where we spent the rest of the afternoon in our family room. Kate rested on the sofa while I went through the writings of my former roommate. As I reflected on my friends’ memories, I looked over at Kate. Despite her cold, she was lying there peacefully with few of her memories left and no sense of the future or just how precious our moments are right now. I felt sad for her. I don’t like to see her facing the symptoms of a cold much less those that accompany her Alzheimer’s. Like my friends who lost their spouses I am grateful for memories of the past, but, unlike them, Kate and I still have time to make new ones. They will be quickly lost for her, but I will remember.