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Confirmation of an Earlier Decision

Five weeks ago yesterday, I took a step I had been thinking about for months. I made an appointment to meet with the marketing director of Forest Hills, a local continuing care retirement community (CCRC). I met with him that very afternoon. I had been there on many occasions to visit friends. Several of those times our friends had invited us to be their guests for dinner in the main dining room. I have always liked the place and thought it could be a possibility for Kate and me at a later point in our lives. Her diagnosis in 2011 made me think more seriously, but I had never taken any steps to learn the details concerning the amenities and pricing.

My meeting filled in most of the things I wanted to know before going any further. I learned about a new building under construction that will be ready in the first quarter of 2021. All but three of the apartments were already taken. I liked what I saw and heard but told the director that I would like some time to think about it. He told me I could hold an apartment for thirty days with a small deposit. If I didn’t want to follow through at that point, they would refund my money. The following week I was comfortable enough to take that step. I met with them and handed over a check. This was getting real.

Two days from now the thirty-day period is over. I’ve had no reservations about the decision I made a month ago, so yesterday I took a bigger step. I made a down payment on the apartment I had selected. With that step, they consider us a part of the CCRC. They gave me a gift certificate for a few meals there and said we were welcome to eat there at any time. They will send us a monthly invoice for meal charges that go beyond the value of the certificate. I doubt that is something we will use, but I thought it was a nice gesture. We are also eligible to use the adult day care services (for a daily fee) should we desire. The services they can provide for Kate have been very important in my assessment of a move.

They also gave me a directory of the other people who will be living in the building. I reviewed the list. I know at least a dozen other couples and three singles. Some I know from church and others from Rotary. I feel sure there are others whom I don’t know but would recognize. That will be a good start for us. I am very comfortable with my decision.

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Taking Stock of Where We Are

As my recent posts suggest, Kate is on a serious decline. Her rational ability to remember names and places is extremely poor although some things jog her memory. Her photo books and my re-telling stories of family, our marriage, and her own personal experiences continue to be helpful. I don’t believe that she ever remembers on her own that she was an English teacher, school librarian, or church librarian. Even when I mention her degrees and her teaching, she is surprised. She was a volunteer church librarian for 19 years. She does recall that if I give her a little information.

I’ve noticed in recent weeks that she does not ask my name or hers as often as she had done previously. It still comes up, but it appears that she has reached something of a comfort level when she doesn’t remember. Yesterday at lunch, I mentioned something about our having celebrated our anniversary. She asked how many years. I told her, and we talked about how good our life together has been. She can’t recall any specifics on her own, but she talked about our having done so many things. I shifted the conversation and told her she was going to get her hair cut at 3:00. I mentioned the name of woman who cuts our hair. Then she asked her last name. I told her. She had difficulty getting it and asked me to repeat it several times. She said, “I just wanted to know in case I need to introduce her to someone.” I said, “I don’t think you have to worry about having to do that.” I paused and added, “But you might want to remember my name.” She looked as though she hadn’t thought about that and said, “What is your name? I really should know that.” I told her my name. Then she asked her own. She didn’t give any sign of being bothered by not knowing or acknowledging that she didn’t know.

I don’t know that she is actually sleeping any more than in the past, but she wants to rest more often. Resting right after we get home from lunch is common now. Frequently she lies down on the sofa while I sit in a chair across from her. It looks like she spends most of her time pulling her fingers through her hair. She does this every night when she gets in bed. She refers to it as “working” and believes she is doing something good for her hair.

While her rational abilities dwindle, her intuitive abilities shine. Almost every time she passes through the family room, she looks at the flowers blooming on the patio and often asks me to come over to look with her. In the past few weeks, it seems like she has gotten as much pleasure from the flowers and trees around town and our neighborhood as she does from music. I am happy to see that. She has also been looking at a garden magazine I got her a couple of months ago. She wasn’t drawn to it then.

She is more emotional about everything. That includes both happy and sad things. She gets teary far more often. I am more careful about telling her of any news that relates to death. She gets very sad. She also responds more negatively to things that bother her. That includes the heat, sudden noises, and music she hears at some of the restaurants we visit.

She still has moments when she wants to do things for herself. I am glad when that happens. Those moments are becoming fewer, however. When getting dressed, she sometimes asserts her independence and then needs to call on me for help. I feel sorry for her when that happens.

I wonder if this desire for independence is related to something else she has done a couple of times recently. At lunch the other day She said she was going to be taking a trip. I asked where. She said, “I haven’t decided yet.” I asked who she was going with. She said, “I’m not sure.”

Coming back from dinner last week, Kate said, “I’m going to pay attention because I’m thinking about coming out this way sometime. I might bring someone with me.” Another night, when I turned on the car’s air conditioner, she said, “I should be paying attention to this.” If I thought she would have any idea of how to start my car, I might be worried.

What seems most amazing to me is that we still enjoy life and each other. Yesterday was a particularly good day. We didn’t do anything special. We just enjoyed being together. I don’t want these experiences to end. If they do, I will try to remember the good times we have had. We are so fortunate.

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Increasing Insecurity

As I mentioned yesterday, our trip to Asheville was a success, but not everything went as I had planned or wanted. I hadn’t fully grasped the degree to which Kate’s insecurity has increased. It was evident in three different moments while we were away.

The first of these occurred Sunday night on our way to dinner. Our hotel was about three blocks from the restaurant. Even before going, I had taken into account that the heat and the walk could be a problem. Not to worry, I remembered they have bike taxies. I would simply arrange for one to pick us up in front of the hotel and deposit us at the entrance to the restaurant. We had done this the last time we were there.

Let me digress for a moment. As a teenager, I worked for my dad installing venetian blinds in homes and commercial establishments. I learned a lesson that has stuck with me my entire life. There is a standard way to install a venetian blind. The only problem is there are so many non-standard situations. The same principle is true for just about everything else we do – even getting into a bike taxi.

Almost anyone could rather easily get into one, but anyone does not include someone in the late stages of Alzheimer’s. Kate was very nervous. It was just one step up and take a seat. We faced two initial hurdles. One is that she was unable to follow the instructions of the driver. He told her to use one hand to pull on the edge of the carriage seat. She could never get that. She kept grabbing the less sturdy frame of the convertible top. The second problem was that she had trouble lifting her leg to put her foot on the step. The driver decided it would be easier if he pulled over to the curb. That way she could start from a higher elevation. That introduced another problem. Every time we told her to step up, she stepped down. It was only after multiple attempts that we succeeded. It required our moving one of her hands from the frame to the edge of the seat and lifting with her other hand.

We were not off to a good start, and we weren’t “home free.” Kate was uneasy the entire ride to the restaurant. She has become sensitive to lots of little things since her diagnosis. That has been especially true in the past year. She was bothered by every bump in the road, and you feel them more in a bike taxi. Fortunately, it was only three blocks. Of course, the next hurdle was getting her out. She was frightened, but we were successful in less time than we had taken to get her in. I paid and thanked our driver and told him we would walk home.

The next day we had lunch at another restaurant that was also three blocks away. We walked. I was optimistic because our walk home the previous night had gone without a problem. I was wrong again. Kate is sensitive to heat and cold, and it was beginning to warm up. The bigger problem involved her perception of the difficulty of walking on sidewalks and pavement. Like many other people with dementia, she perceives differences in color and shape to be differences in elevation. We did, in fact, walk in a few places where a brick pathway required some care. For the most part, however, we walked on relatively smooth surfaces. Kate was hot and uneasy the whole way as well as going back. Fortunately, she relaxed quickly once inside the restaurant.

It wasn’t long after our return home yesterday, that it was dinner time. We went out for our regular Monday night Mexican meal at Chalupas. As she was getting out of the car, her face came very close to the top corner of the door. (I keep my hand on it to prevent an accident.) She was startled by how close she had come. I lightheartedly said, “There are so many scary things in this world.” She agreed and said in a serious way, “but I feel safe when I am with you.” This is yet again a reminder of how frightening life must be for her. As aware as I am of this, I tend to forget about it in the course of a day. But the best part of the day was yet to come.

We had a pleasant time and enjoyed our conversation. Kate seemed very relaxed. After I paid the check, I said, “Well, would you like to go home now?” She said, “Could we just relax a few minutes?” I said sure. That “few minutes” turned into almost an hour of conversation during which she did most of the talking. She talked about life, about the people who are much less fortunate than we are, about travel and how it broadens our perspective on life.

Several times when she paused I asked if she was ready to go. She said she just enjoyed being together and that she would like it even if we didn’t say anything. This was far from the first time that she has been in a talkative mood. I always enjoy these conversations. She seems so relaxed, so comfortable, so happy, so grateful.

This time her conversation caused me to reflect a little more on her insecurity of the previous twenty-four hours and the shift in her feelings. I have tried to maintain a routine life for her. As a person of routine, that was quite natural for me. It was also based on the experiences of many others who stress the importance of routine for PWD. Until now, I hadn’t been particularly aware of Kate’s experiencing any distress in connection with changes. I wonder now about the strangeness of being in a place she couldn’t remember and encountering things that frightened or bothered her. How was she processing all of that? I only know that she seemed very insecure in moments, but they were not lasting. She still enjoyed other moments like our time at Chalupas last night. She had a number of other special moments while in Asheville. That makes me think about one other experience while we were there.

After finishing her lunch yesterday and before the server removed her plate, she called my attention to the colors of the remaining food on her plate. She pointed to the red of a piece of tomato over “here” and another “over there” and the green of the last pieces of lettuce. She saw them as something beautiful, a work of art. She also took interest in some very small bread crumbs on the table. They were smaller than ants. I thought she was going to tell me they were alive the way she had done this past Friday at dinner in Knoxville. She didn’t. She took them for what they were, just crumbs. Then she surprised me by putting a small piece of lettuce on her thumb and saying, “This one’s still alive.” I said, “I love it when you enjoy such simple pleasures.” We both said the simple ones are the best, and they are.

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Visit With Friends

On Saturday, Kate and I visited Angie and Tom Robinson in Nashville. That followed my previous post about Kate’s difficulty with conversation. I think that put all of us on alert. Before we left, I had a brief phone conversation with them. I didn’t have any good suggestions except to keep in mind that she can talk about her feelings about things without remembering the actual facts. I also told them I didn’t have any special concerns and thought the visit would go well. That belief was based on the fact that we have a long history together. Our friendship goes back to undergraduate school. Even if she couldn’t remember their names or any of the facts about them, I thought her intuitive abilities would help her feel at ease. Having felt that way, I also told them I would step in if I felt there was a way that I could facilitate the conversation. As it turned out, the visit went well. The best indicator of that was Kate’s remark right after we got in the car. She said, “They’re a nice couple.” If she had felt otherwise, she would have said so.

We had a good time, but this visit was distinctly different from others. To me, it seemed like Kate exhibited more of her symptoms than before. When she said goodbye to Angie, she said, “It was nice to meet you.” Tom later told me in an email that she had told him “It was good to see you and, Oh, . . .” and then pointed to Angie. It was obvious Kate couldn’t remember Angie’s name. They also got to hear her snap at me one time. There were a number of other times that she hadn’t been able to follow or understand something that was said and had to ask us to repeat or explain.

One especially interesting thing happened. Kate picked up a book by Bishop Spong that was on the table in front of her. We have heard him speak at Chautauqua on at least four different occasions, but I doubt that she remembered him. I think she was caught by the book’s title, Unbelievable. She leafed through it and found a number of topics that intrigued her. Once she wanted me to read a portion of a chapter. I read a line or so. It was obvious that this was going to be too much for her (and for the rest of us as well). In a follow-up email, Tom took note of her interest. It’s the kind of thing one might assume is unlikely for a person with dementia. As I have noted in other posts, this represents an interesting intersection of rational and intuitive abilities. She no longer possesses the rational ability to understand many things, but she retains an intuitive feeling that intellectual things are important and/or interesting. She wants to know far more than she is able to grasp. That’s a sad thing, but she doesn’t seem to be disturbed. Once she realizes she can’t understand something, she lets it go. I am always glad to see that she retains her interest in intellectual and social issues.

One final note about our time with the Robinsons is that they did notice her physical deterioration. She has considerably more trouble getting up from a seated position as well as walking, especially when it comes to going up and down curbs or anything that she thinks is a high elevation. I have been increasing concerned about this myself. I attribute it to the fact that she is far more sedentary now than in the past. She doesn’t exercise at all, and we don’t go out as much as we did before. When we are at home, she spends all of her time resting, sitting while working on her iPad, or looking at family photo albums. At the rate she is going, she will soon be using a walker. I would like to postpone that and a wheelchair as long as possible. There is always something new that requires attention.

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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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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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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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Kate’s Emotions Bring Touching Moments

Kate received Mother’s Day cards from our daughter and her twin boys on Saturday. I put them on the island in the kitchen with the intention of giving them to her the next morning. When we came home from dinner, she saw them and asked what they were. I told her, and she wanted them. I gave the cards to her and helped her read them. Then she took them back to the bedroom where she looked at them again and put them on her bedside table.

That night she picked them up and sat down with them while I took a shower. She was still looking at them when I got out. She must have looked at them a full 30 minutes. She had a beautiful smile on her face.

After she was dressed and ready for lunch with the sitter yesterday, she picked up the cards and took them to the family room where she sat down and looked at them once again. Knowing that she has trouble reading, I asked if she would like me to read them for her. She did. As I read each one tears filled her eyes, she wanted me to read them again. Then she took the cards in her arms and held them tightly against her chest and said, “I’m going to keep these forever.” She paused and said, “And I’m going to tell my children not to ever throw them away.”

I’ve never seen her react so emotionally to cards. In fact, I have been surprised at how little interest she has had in them in the past. I think the explanation lies in the fact that she is at a new stage of the disease. It seems like she is moved even more now by all those things she experiences intuitively. That is true for music, for the beauty of nature, her interest in children, and to expressions of love and concern for her.

I can think of two other examples from yesterday. One involves a ceramic cat that sits on the floor one side of the fireplace. She passes it every time we leave the house. Yesterday, as usual, she stopped to look at the cat and commented on his eyes. She doesn’t confuse him with a real cat, but she loves him almost as much.

The other involved one of the paper doilies that she brings home from one of the restaurants we visit. She loves them. That was obvious when she held one in her hand and wanted to take it with us to dinner last night. It’s like her emotions are in overdrive. She is becoming more childlike. Her rational abilities are almost gone. Her intuitive ones sustain her. For me, each of these things brings a moment of sadness, but I am grateful and touched to see her enjoy such simple pleasures.