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The Challenges of Conversation

Kate has always been adept at handling conversations in ordinary social situations even though she is a bit introverted. Her mother was very gifted in the same way. In addition, she grew up in a large family, many of whom lived in the same town and went to the same church. Her life was filled with many experiences that enabled her to develop her conversational skills.

The skills she developed over the years served her well when Alzheimer’s entered the picture. She was able to get along quite well without feeling insecure or revealing her Alzheimer’s to other people. That has gradually changed over the years. She is now handicapped in three ways. First, the loss of memory deprives her of a significant amount of information that is useful in conversation. Think a moment. When you bump into a friend or acquaintance, you are usually able to call them by name or remember the connection you had with that person (someone you worked with, played bridge with, was a member of your same book club, etc.). You probably remember if that person is married, has children, has a particular interest, and many more bits of information. When Kate encounters someone, she has none of those things to go on.

The second deficit she has is that she has difficulty understanding the conversations in which she finds herself. That leaves her unable to follow up on something the other people have said. These days her participation is heavily oriented to questions that ask who or what is being talked about and asking for explanations of the content or specific words. Her vocabulary has decreased significantly. That has to add another measure of confusion.

Third, dementia makes it harder for a person to process information. It is never easy to understand what is said, but it is especially difficult given the normal speed with which people speak. While Kate is trying to process the first bit of information someone is saying, the other person is already on to the second, third, fourth, or fifth bit of information. It is simply overwhelming. In restaurants where Kate experiences most conversations, there are also many distractions that occur simultaneously. The noise level itself can present a problem understanding what others in your party are saying. Sometimes a serving tray overturns or the server comes to the table to take your order. All these things make it hard for Kate and others with dementia to process information.

I’m thinking of these things because Kate and I had dinner the other night with a couple we know from our music nights at Casa Bella. Apart from sitting with them at Casa Bella, we have eaten out with them at least six or eight times in the past eight months. Two of those times were overnight trips to Flat Rock, NC, where we had dinner and attended a show at the Playhouse. She cannot remember them at all. I’ve never seen any sign that she recognizes them – even intuitively.

That night we went to a new restaurant and had an excellent meal. The other couple and I are the talkers. The restaurant was very noisy, and we sat near a server’s station where they dropped dirty dishes on top of one another. Kate hardly spoke during the entire evening. I believe the only words she spoke were questions regarding the menu or for clarification about something that was said. We ordered a cheese and hors d’oeuvres platter. Her vision problem prevented her being able to identify some things. Kate and I shared a large platter of paella for our entrée. She liked it but said nothing about it. I worried about how she was getting along, but there was simply no way to make the situation much easier for her. When I asked how she enjoyed the evening after we left, she said it was a nice evening. By that time, I’m not sure she could even remember what it had been like.

That is just one of a few other similar occasions with friends. It is just one more marker on this journey. I am grateful that she has gotten along so well in the past, but I don’t like the direction in which we are moving. In addition, it feels like the changes are coming more quickly now.

This afternoon we are visiting our longtime friends Tom and Angie Robinson in Nashville. I will be eager to see how that goes.

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Lunch Conversation

During our lunch yesterday, Kate asked my name and then hers. She picked up the last name we have in common. Then I said, “Now, do you know how we are related?” (That’s something I don’t do very often. I never want to disturb her when she can’t answer, but she almost always engages in these conversations without any concern at all about not remembering.) This time she said, “Tell me.” When I did, she looked startled and said, “Excuse me?” I said, “That’s right. I’m your husband. You look puzzled.” I don’t recall exactly what she said. Here is what she was trying to say. “I was trying to think of the words I wanted to say but couldn’t. They are words I shouldn’t say.” She wasn’t clear, but I believe she was trying to say she was so surprised that she wanted to use profanity but couldn’t remember the words. I said, “Your surprised.” She said, “Don’t you think I should be surprised if we are married and I couldn’t remember?” I said, “Yes.” She said, “See, I’m smart.” I said, “I know you are. You are very perceptive and insightful.” She didn’t care for my translation and said, “I would say I’m smart.”

This was one of those times when she simultaneously shows that her memory is gone along with an intuitive sense about the situation. Her intuitive abilities permit her to see some things while her memory continues to fail.

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Dealing with Squamous Cell Carcinoma

Except for our regular appointments with our doctors and dentists, Kate and I have had little reason for medical treatment since her diagnosis. A year ago, Kate’s arthritis in her right knee led us to an orthopedic clinic for a shot of cortisone. She has gotten along well since then although she complained of a little pain a few months ago. More recently, I have asked her on several occasions if she felt any pain. She has always said she didn’t.

Four or five weeks ago, I noticed a small growth at the edge of her upper lip. It had been well over five years since she had seen her dermatologist. I made an appointment, and the doctor performed a biopsy. A week later, I received a call that the she has a squamous cell carcinoma. We arranged an appointment to have it removed. It was scheduled for noon yesterday.

I much preferred an afternoon appointment. That would have been much easier for Kate and for me as well. That’s because I would have to wake her earlier to have lunch before the surgery. Unfortunately, we would have had to postpone the appointment until much later. They didn’t recommend that.

Every time I face getting her up early, I do so with a bit of trepidation. This time there was no problem at all. Although I had to wake her, she got up easily. That enabled us to have a leisurely lunch and arrive at the doctor’s office twenty minutes before noon. I didn’t mention where we were going until lunch. Kate didn’t understand why we needed to see the doctor and quickly forgot. I explained again on the way over, but she never really grasped the problem.

The doctor who was to perform the surgery was not her regular dermatologist. This doctor is a specialist in squamous cell carcinoma. He immediately noticed that it was hard to see the spot where the biopsy had been taken. Her dermatologist had either removed a large portion of it or it had diminished since the biopsy. The specialist summarized five or six options for treatment. They included complete surgical removal, radiation, freezing, and a topical chemical treatment that we could give at home twice a day for three weeks. After a brief discussion, we settled on the chemical treatment. That requires a compounding pharmacist. I took the prescription to the pharmacy, but they said it would be 24 hours before they would have it ready. I’ll pick it up later today.

As you might expect, the whole process was confusing for Kate. I tried to translate the doctor’s explanations, but she never really understood why she was there and that she had almost had surgery. In this situation, I didn’t think that was a bad thing. She didn’t seem annoyed or frustrated by it all. She wanted to understand what the doctor was saying. She just couldn’t.

I had a United Way meeting at 1:30 and had arranged for our sitter to meet us at the dermatologist’s office at 1:00. She arrived a few minutes before that as we were checking out. Perfect timing. This was one of those times it was really nice to have a sitter. She was able to take Kate home while I went to my meeting. Kate mentioned that she was hungry, so they dropped by Panera on the way. That meant she had a second lunch, but it also helped Kate pass the time until I got home later.

The balance of the day went well. At dinner, we ran into three people we know and had nice conversations with them. At home, we watched an Andre Rieu concert from London on YouTube. Kate enjoyed it more than usual. I’m glad to report it was a good day.

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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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The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.

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Awake Again and Confused

Having a video camera in our bedroom has helped me monitor Kate in the morning while I am in the kitchen. The only problem I have encountered is that I need to watch it constantly. Several times Kate has gotten out of bed while I was reading or working on my computer. One of those was this morning.

After my previous post, I returned to the kitchen since Kate was sleeping soundly. At 10:30, I decided to check on her. I saw the light was on in another bedroom. I walked in and found Kate. She had gotten up and was confused about where she was. She was wandering about. I asked if she wanted to go to the bathroom. She said she didn’t but wanted to lie down. I walked her back to our bedroom. She was shaking from fright. She held my hand all the way. As she got in bed, she asked, “Where are we?” I told her that we were in our home in Knoxville. That didn’t stick. She asked me several other times within a minute or two. I told her she seemed confused. She nodded. I asked if she knew that I am her husband. She said, “Yes.” She asked where we were again. Then she said, “What’s your name?” I said, “Richard Creighton. Do you remember that I’m your husband?” She said she did. She asked if she could rest. I told her she could and that I would get her up when it was time to go to lunch. I asked if she wanted me to stay with her. She said, “Please.”

It is now 11:05. I will let her sleep until 11:15. Then I will wake her for lunch. We are going to one of our local theaters for a 3:00 performance of Mamma Mia, so I can’t let her sleep much longer if I want to avoid rushing her.

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Addendum to Previous Post

In yesterday’s post, I mentioned a variety of Kate’s behaviors that suggest to me that she is nearing the last stage of the 7-Stage model of the progression of Alzheimer’s. During the night and this morning, we had two other experiences that reinforce my conclusion.

At 3:30, she started to get out of bed. I asked if she wanted to go to the bathroom. She did, and I walked around the bed to assist her. She seemed amazingly alert. She didn’t want my help except to direct her to the bathroom. I asked if I could do something for her. She said, “I just want to get dressed.” I explained that it was early in the morning, and it would be better to go back to bed. She looked puzzled when I suggested that. It wasn’t until after she left the bathroom that I was able to convince her that she should go back to bed. She seemed wide awake and didn’t go back to sleep immediately. As we lay in bed, she said, “Do you do this for everybody?” I didn’t know what she was talking about but said, “Only for you.” She laughed. Then she said, “Who are you?” I said, “I am Richard Creighton, and I’m your husband.” She laughed again and said, “Oh, please.” Then she asked again, “Do you do this for everybody?” That was followed by my answer and her asking “Who are you?” again. This sequence of questions and answers must have been repeated three or four times. Then I told her I was going to sleep.

Shortly after 7:30, I noticed on the video cam that she was moving in bed and went to the bedroom to check on her. When I approached the bed, I said, “Good morning.” Her eyes were open. She looked at me, but she didn’t say anything. It was clear she was having a very different experience than the one that occurred at 3:30. I told her that it looked like something was bothering her and said I would like to help. She still didn’t say anything. I asked if she could tell me what she was concerned about. She didn’t answer. I said, “Is it something that is hard to explain?” She nodded that it was. I repeated that I would like to help her. Then I told her I had been eating breakfast and asked if she would like me to stay with her. She grabbed my hand and nodded. I told her I would get my breakfast and come back to stay with her.

It is now thirty minutes later, and she appears to be asleep. I’ll stay a little while longer and then go back to the kitchen. She can appear to be so different from one time she wakes up to the next. I can’t help wondering what she will be like when she gets up for the day.

She is definitely making more changes now. Another one that I neglected to mention in yesterday’s post is that she is having more trouble expressing herself and stumbles with the pronunciation of a greater number of words than in the past. She sometimes has trouble remembering and pronouncing simple words like “shoe” or “toes.” She often passes it off and says, “You know what I mean.” As you would expect, this is a concern for me. For the past four years, I have observed the effect that speech has had on our relationship with Kate’s friend, Ellen. She suffered a stroke and has never been able to speak so that we can understand everything she says. At one point, we could understand 60-70% of what she said. During our recent visit, that had dropped to 20-25%. The way Kate is beginning to stumble over her words is similar, though less serious, that our experience with Ellen. Difficulty with speech is another of the signs of the later stages of Alzheimer’s. Life continues to change for us and more rapidly now than in the past.

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Taking Stock of Where We Are

I’ve read that one of the first questions most people ask after hearing their diagnosis is “How long do I have?” That was true for Kate. I think the best answer is “It’s hard to be sure.” Kate’s doctor said, “I’ve had patients who lived for another twelve years, but it can vary a lot.” I’ve heard the same figure other places and also 8-10 years.

I was among those who wanted to know “how long?” However, having learned that we had less time than I expected before her diagnosis, I found it more helpful to focus on the present. Kate and I wanted to make the most of that time. On a continuing basis, I have felt knowledge of the various stages of Alzheimer’s is useful.

There are at least two widely accepted models that identify the symptoms that are characteristic of each stage. One has three stages. The other has seven. If I use the 3-Stage model, I believe Kate is in the latter part of Stage 2. The Alzheimer’s Association says that is the longest stage and can last many years. That seems to fit with Kate’s experience.

I have paid more attention to the 7-Stage model. Perhaps that is because it seems somewhat more precise. I know that’s a bit strange to say in that both models describe general characteristics. Not everyone exhibits exactly the same symptoms. I would say that Kate has been in Stage 6 for more than a year. Her recent changes suggest that she is nearing Stage 7. Here is how WebMD describes the symptoms for these stages.

Stage 6: Severe Decline

As Alzheimer’s progresses, your loved one might recognize faces but forget names. He might also mistake a person for someone else, for instance, thinking his wife is his mother. Delusions might a set in, such as thinking he needs to go to work even though he no longer has a job.

You might need to help him go to the bathroom.

It might be hard to talk, but you can still connect with him through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.

Stage 7: Very Severe Decline

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period.

To get an idea of where Kate fits in these models, I think it is better to consider the kinds of behaviors that are now becoming commonplace. Here are a few things that have occurred in the past few days.

Confusion about Where She is

I don’t think she ever is quite sure of where she is with respect to the city of Knoxville. Increasingly, she doesn’t recognize that she is in her own house. She seems to ask where she is less frequently and assume that she is in Fort Worth. Leaving the restaurant the other night, she asked where her childhood home was located. I told her Fort Worth. She asked if I could drive by her house. I told her we would and planned to drive by one of our former houses in Knoxville. It turned out she forgot rather quickly. I just drove home. She never realized what happened. When we arrived home, we looked around the yard. Then I led her into the house. She asked if we were spending the night. I said yes. She wanted to know if I had everything we would need. I told her we did. She didn’t know it was our house. This is not a new experience. It is just more common now.

Having Milder, But More Frequent Moments of Anxiety

It’s been about ten months since Kate’s first attack of anxiety. It occurs when she seems to be aware that she doesn’t know where she is, who she is, or “what is going on.” Altogether she has had only five or six of them. Three occurred in the past week. One was yesterday morning.

She looked sad and/or slightly frightened when I woke her at 11:00. I asked if I could help her. She nodded. I asked her to tell me what was wrong. She didn’t say anything. She closed her eyes and looked so sad. I said, “I think I am your best friend. I would love for you to tell me what’s troubling you so that I can help.” She started to cry but didn’t. She didn’t say anything. I said, “I wonder if you might feel better if you got up and let me take you to lunch.” She nodded agreement. I proceeded to pull the covers back and help her out of bed. I walked her to the bathroom where she used the toilet and then brushed her teeth. Then we walked back to the bed where she sat down to get ready to dress. She said, “I am so glad you’re here.” I said, “You know that I will always be with you. We’re a team. We have been for almost 56 years. We always will be.” She said, “I know. We just clicked.” I said, “Yes, from our first date.” She again said, “I’m so glad I have you.” Then she said, “What is your name?” I told her, and she asked, “What is my name?”

When she had almost finished dressing, she said, “I’m feeling better now.” I said, “I think it was good for you to get up and dressed.” She said, “Yes, but I think it was also talking with you and knowing that you are always with me.” That was one of the many times that I was fighting back tears. We went on to have a nice day.

Recognizing Our Relationship

My guess is that she can’t remember my name or hers most of the time. About six months ago, I would have said she remembers that I am her husband about half the time. I would say that has dropped to 25% of the time. The good news is that she still responds to me as someone she “knows and trusts.”

Heightened Emotions

As she has lost almost all her rational abilities, her intuitive ones have become much more apparent. Her feelings for the beauty of nature, especially trees, are much more noticeable. I had someone refill the pots on our  patio and front porch with new flowering plants. She loves them. I did the same thing last year and hardly got a reaction.

She has stronger feelings about normal items in our environment and wants to take them with her when we go out. The other night she picked up one of the decorative pillows from our bed and took it to the car with us. When we got in the car, she asked what to do with it. I told her I would put it in the back seat. Last night, she wrapped her nightgown around her arm as though it were an injured arm. She was planning to take it to dinner with us.

There are numerous other examples of her emotional attachment and feelings about things. She has developed a ritual of looking at her ceramic cat and a photo of her father each time we are about to leave the house. On only a few occasions has she recognized him as her father.

She has been sensitive to sudden noises for a long time. Now she is frightened even by noises that are not loud. She is bothered by music in restaurants much more than in the past. It seems like almost anything can frighten her.

Music is even more important. She likes for us to sing together. Yesterday, we went to lunch at Applebee’s. It’s just a short drive from our house. I told her I was going to play some music she would like and turned on “Edelweiss.” It hadn’t finished when we arrived at the restaurant. As we walked to the entrance, I started singing it for her. She joined in. We didn’t get far before we stopped. The fellow serving as host opened the door for us. Once we had ordered, Kate wanted us to sing again. I hesitated for a moment. We were early, and there was no one seated around us. I started singing “Edelweiss.” She sang along, carefully following the words as I sang them. It was another touching moment.

She responds with sadness to the news or any other information that involves people who experience some kind of trauma. At Casa Bella this past Thursday, the woman sitting next to her told us about a fire that occurred in the restaurant years ago. Kate didn’t grasp that this was an old incident. She immediately took the woman’s hand with her own hands. She had such a sad look on her face. It looked like she was about to cry. I explained that this was something in the distant past. Then she was all right.

She also responds with a sad look and tears in her eyes when good things happen. Her response to her Mother’s Day cards is a good example. Another would be her response when I tell her I love her.

The heightened intuitive abilities have also been accompanied by changes in her aesthetic tastes. As we go through the laundry room to our garage, she often stops and looks at the items on the counter and admires the arrangement of things. Sometimes she moves some of them to other places she likes better. At restaurant, she sometimes uses her napkin as a place mat and carefully places her flatware on it.

Feeling More Dependence on Me

She asks me for directions on many things she would not have had to do before. For example, last night she asked me where to put her iPad after she had finished using it. Normally, she would just leave it wherever she was at the time. She has a greater sense of not knowing what is the right thing to do. She sometimes asks if she should take all the pills I put out for her. In restaurant, she sometimes asks me where to put her napkin. Over the past month or two, I have started cutting her meat for her. She likes that and has shown no effort to retain her independence.

At the same time I see her adapting well with the sitters, I also see signs of greater dependence. When we arrived home after lunch yesterday, the sitter was waiting for us. Kate said, “Who is that?” I said, “That’s Mary. This is my day to go to the Y. Mary is the one who will be staying with you while I am gone.” She looked disappointed and said, “How long will you be gone?” I said, “A couple of hours.” It’s nearly four hours that I am gone, but I know that she can’t tell how much time has passed. I think “a couple of hours” sounds better than “four.” When she heard that, she shrugged, and we got out of the car. Mary had gotten out of her car and greeted us. Kate responded like she was a longtime friend. Naturally, I felt good about that.

Once inside, Kate followed me to the bathroom where I was brushing my teeth. While she brushed her teeth, I went to the family room where Mary had taken a seat. Before I could say anything, Kate walked in and with a smile on her face said, “Richard said I could go with him.” I hated to tell her I was leaving, but that was the only thing to do. Fortunately, she accepted without protest though she looked disappointed.

There are two other things I should add. One is that she didn’t have as good a time at Casa Bella the other night. We were seated at a larger table with three other couples. That is just too much for her. At first, she seemed to try to be a part of the conversation. She ultimately sat back quietly. I hope that we will be at our regular table in the future.

The other thing is that she has seemed much more childlike in the past few weeks. That’s a little hard to describe, but it is evident in the way she expresses herself.

The rapidity with which the changes are occurring suggests to me that it won’t be much longer before she will be in the late stages regardless of whether I use the 3-Stage or the 7-Stage model. We have gotten along “remarkably well” during the earlier ones. I am hopeful that will be true as we go forward, but it is the stage everyone wishes would never come. I am no exception.

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Making Plans

We face important decisions at every stage of our lives. It’s no surprise that seniors confront them as well. Some decisions are more significant than others. For example, when should I retire? What will I do after retirement? Sooner or later (we always hope the latter) we face things like giving up driving. That’s a big one. Few people want that. It’s a critical sign that we are giving up some of our independence.

An even bigger one is where we live as we age. It’s no secret that most of us want to continue living in our own homes. As our population ages, there is a growing effort to support seniors in their effort to accomplish just that. As with so many things, finances play a key role in such decisions. The combination of personal preference and finances accounts for the fact that most seniors do live in their own homes. At the same time, there are increasing options available for those who might feel the need to do otherwise.

I will turn 79 one month from today. That was the age of my parents when they talked with Kate and me about moving from West Palm Beach to Knoxville. We encouraged them, and they moved here in 1994. They lived in their own apartment. It worked out well for us and for them. I didn’t realize it at the time, but my mom was probably showing the early signs of dementia before then. Four years later, she was diagnosed here in Knoxville. I suspect their age and their health situations were strong motivators in their move. They loved South Florida and wouldn’t have wanted to leave otherwise.

At my age and with Kate’s Alzheimer’s, I find myself in a similar situation. For several years, I have thought about our options. Kate and I have lived in Knoxville for 48 years. We have invested our lives in this area. I find it difficult to think about moving away. On the other hand, Kate and I long ago agreed that we wanted to make life as easy for our children as possible with respect to their care for us. There is no way to relieve them of all responsibility, but there are ways to make it easier.

One of those would be to move closer to them. Right away that becomes a problem. Our daughter lives in Memphis, our son in Lubbock. If we move close to one, we are much farther from the other. Despite that, Kate has always wanted to go back to Texas, and our son is in the elder care business. He is a care manager who works with seniors and their children to meet the needs of both the parents and their children. He is familiar with all the senior resources that are available in the Lubbock area. If we were going anywhere, that sounds like a perfect option.

I’ve thought about this a long time and have mentioned it to both of our children, but I’ve never taken any steps to explore moving out of our current home. During the past six to eight months as Kate has declined, I have become increasingly concerned about what would happen to her if something unexpected happened to me. Could this be the same motivation that influenced my parents’ move?

For years, I have been reasonably familiar with Knoxville’s continuing care retirement communities (CCRCs) as well as the independent living, assisted living, and skilled nursing facilities (including memory care). I haven’t seriously considered any of them for Kate and me, but I have felt three of the CCRCs were possibilities for us should we ever have the desire or need.

Two or three months ago, I decided I should get more specific information about one of the CCRCs I believed was most suitable for us. Each week I meant to call but never got around to it. In the meantime, Kate’s condition has noticeably declined. Two weeks ago, I decided I needed to take action. I called for an appointment. Two days later, I spent almost three hours with the marketing director and one of his staff. They took me through all the details of their community and what it has to offer. Because I have visited several residents over the years, I was familiar with some things, but there were many things I didn’t know. One of those was about a new building that will be completed sometime during the first quarter of 2021. All but three of the apartments were pre-sold. Nothing was available among the existing buildings.

I took several days to think about it. Then I arranged another meeting with the intention of making a deposit on one of three apartments that were still on the market. I met with them again, got a little additional information, and wrote a check for the deposit. I have thirty days to make a final decision. If I decide to go ahead, I will have to put down a larger down payment. If I decide this is not for us, they will return the deposit. Until then, I plan to weigh all the benefits and potential downsides. My friend Mark Harrington once told me that when he is facing a choice like this he flips a coin to determine which way to go. Then he sleeps on it overnight before making a commitment. If he feels comfortable with the decision the next morning, he commits himself. If not, he looks to the other option. In a way, that is what I am doing with my decision. I’ll see how I feel at the end of thirty days.

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Thoughts on Caregiving and Stress

One of the major topics among caregivers and the professionals who provide services to them and to their loved ones is caregiver “burnout.” Marty Schreiber, the author of My Two Elaines and a former governor of Wisconsin, is a very active speaker at many conferences and workshops across the country. He vividly presents his story of trying to “do it all” himself and the toll it took on him. He encourages caregivers to care for themselves and to recognize and seek help when it is needed.

I share his views and have worked hard to minimize my own stress. I watched my dad deteriorate as he cared for my mom. I am much like Dad, but I am not resistant to bringing in help.

At one time or another, almost all of my friends have asked how I am doing and if I am getting help. I appreciate their concern. I am concerned as well. I do, however, believe that I am doing quite well. That’s not to say I don’t experience stress. I do, and it’s increasing. The good news is I’ve been able to manage it pretty well. Let me explain.

My stress seems to come from two distinctly different sources. One is the sheer number of responsibilities I have. The other is a psychological one that relates to watching Kate lose one ability after another with the knowledge that it only gets worse. In this post, I will discuss the stress arising from my responsibilities as Kate’s caregiver.

The 36-Hour Day is, perhaps, the best-known resource for families who are caring for someone with dementia. As the title conveys, the responsibility for caring for a loved one with dementia requires more time than anyone has available. The responsibilities increase as our loved ones decline. If we try to do everything, something has to give, that is, some things will go undone. Often that means caregivers neglect to take care of themselves. Up to now, that has not been a major problem for me. There are several reasons.

One is that I have help. I engaged sitters for Kate a year and eight months ago. I have someone with her three afternoons a week, four hours each time. That enables me to get to my Rotary meetings, to the Y, run errands, and meet with friends. In addition, I have help with house cleaning and the yard. That means I can focus my attention on Kate.

I don’t participate in a support group, but I feel I get support in a variety of other ways. I have two longtime friends from college with whom I am in daily contact by email. One lives close enough to us that we are able to get together several times a year. We have other friends who are close enough for us to make daytrips to see them as well.

Regular readers of this blog know that we eat out for all meals but breakfast and attend live performances like the music nights at Casa Bella and local theater productions. They are both beneficial for Kate and for me. We are not socially isolated. We have church friends and staff that check in on us. I am on a steering committee at United Way and meet with them monthly. I meet for coffee with Mark Harrington every Friday after finishing at the Y. In addition, I stay in touch one or two other friends who are caregivers. I shouldn’t fail to mention this blog and my involvement with Twitter. All of these keep my mind occupied as well as having therapeutic value for me.

In addition, my responsibilities as a caregiver have not been as daunting as those of most others. Quite a few people our age are dealing with other health issues along with dementia. Apart from an occasional cold, neither Kate nor I has had any other health problems to deal with.

Some caregivers face a variety of problem behaviors from their loved ones. Although Kate has been more irritable than she was before Alzheimer’s, she is good-natured, loving, and most appreciative of what I do for her. It would be much harder for me to cope if she were not.

Finally, I believe my past experience with caregiving has helped me. I am now in my thirtieth consecutive year of caregiving. Most of that was with our four parents and my dad’s significant other. Some of that involved overlapping care of three at a time. Fortunately, we had fulltime professional care for both of Kate’s parents. Each of our parents’ situations was different and helped to sensitize me to a broad range of issues. I haven’t felt that I was caught off guard when Kate was diagnosed.

All of this is to say that I haven’t experienced the same degree of stress that faces so many caregivers. I am very fortunate. As I write this particular post, I should note that my stress is at its greatest level. I find myself slipping to take care of a wide range of obligations. Most of them are inconsequential. For example, I had purchased tickets for us to attend a local variety production of Broadway music at one of our local theaters this past Sunday. It is something we would have enjoyed, and we had no other obligations. I simply forgot to put it on my calendar, so we missed it. There are other things that relate to the maintenance of the house that get less attention than they deserve. I have plans to address them a little at a time over the next year. As Kate declines further, I will retain additional help and will likely participate in one or two support groups, but, for now, my stress is still at a manageable level. I am grateful for the concern and support I receive from those around me.