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.

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.

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.

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.

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.

More Confusion and Confusion

Shortly after midnight last night, Kate and I had what was almost a replay of a conversation we had yesterday morning. I had gotten up to go to the bathroom. When I got back in bed, I noticed that she was awake. She said, “Where are we?” That began another conversation that lasted until 1:35. She said she didn’t know anything. As I had done the night before, I said, “That must be scary.” She said, “Very.” From there I gave her my name and hers and our relationship. I followed that by lots of the same family information I had given the last time.

Several times she said, “I don’t understand why this is happening.” I told her I didn’t either but that it had happened other times and that she improved as we talked about our lives and family. This conversation was unusual in that she was able to grasp the change in her memory (or the way she felt) as I fed her information. At one point, I asked if I was overwhelming her. She said, “No, I can tell it’s helping.” She suggested that she was remembering a few things and that made her optimistic that her memory would come back. It’s been close to a year since she had her first experience like this.

At that time, it brought about a more intense emotional response. I described it as a “panic” or “anxiety” attack. This morning’s experience was not nearly as intense, but it had an element I had not heard since last summer. She made reference to her doctor’s telling her she might get better. She said the doctor also indicated that she might not. Nonetheless, she was encouraged last night. She also talked about the support she had received from friends. This time, however, she mentioned that her memory might not come back “all the way.” I told her no matter what I would be with her to help. We both said that whatever happens, we would deal with the situation, that we were good at adapting.

The conversation ended when she said, “I think I’ll go back to sleep now.” I asked if she felt relaxed. She said she did. The crisis was over. What is lingering in my mind now is that she seems to grasp that she has something that she won’t be able to conquer. She may improve, but the problem won’t go away. Once again, her intuitive thought processes are working. She doesn’t have a name for it or understand a way to beat it, but she knows something is wrong.

Just before 9:00 this morning, I saw on the video cam that she was starting to sit up in bed. I went to her. She smiled, and I walked over to the bed and sat down beside her. I was expecting that she would be back to normal again. She wasn’t. She was just as confused as she was earlier this morning. The difference was that she wasn’t in the mood to talk about what she was experiencing. She kept saying (not in rapid succession), “I don’t know what to do.” I asked if she would like to go to the bathroom. She asked why. I told her that she usually wanted to go to the bathroom when she woke up about this time. She repeated that she didn’t know what to do. I tried the same approach that had been successful in our two previous midnight conversations. She didn’t seem to pay attention. I think she was still tired and wanted to go back to sleep. I asked if she would like to see some pictures of her family. She didn’t, but I showed her a wedding photo of our daughter and brought in the “Big Sister” album to the the cover photo. She responded with a smile when she saw it, but she wasn’t ready to look at anything else. I asked if she wanted to rest a while longer. She nodded. I asked if she would like me to stay in the room with her. She did. That’s where I am right now. She opened her eyes a few minutes ago but is asleep again. We have a 12:30 reservation for lunch. I think I’ll let her sleep until 11:00 or 11:30 before waking her unless she gets up on her own.

I don’t like all the signs I have seen over the past week or two. This isn’t a change for the better.

Not a Cheerful Day

Yesterday was a nice day, but Kate was not in a cheerful mood. That was most obvious in her conversation. It began first thing in the morning. She didn’t give me a smile when I went in to get her up. Although she didn’t ask, I am pretty sure that she didn’t recognize me as her husband. On the other hand, she wasn’t alarmed. She was more independent. She didn’t want my help when I gave her my hand to help her from the bed. She told me she could do it herself. As I walked her to the bathroom, she changed her mind and wanted to hold my hand. Once in the bathroom, she responded to me as someone she recognizes and trusts.

We had lunch at Casa Bella with one of our associate pastors and his wife. She has always been drawn to him, but she no longer remembers him or his wife. I reminded her of how much she enjoyed his preaching and teaching. It didn’t seem to ring a bell. The lunch went well. We enjoyed being with them. Kate talked very little. I don’t believe it related to her not remembering them. I think she was just not in a talkative mood yesterday.

Her “Big Sister” photo album was the hit of the day for her. She took it with her when we went to lunch but left it in the car. We came back to the house where she spent some time looking at it before and after our appointments for haircuts and again after dinner before working on her jigsaw puzzles.

She didn’t talk much going to and from our hair appointments or lunch and dinner. Neither did she say much while we eating last night. She didn’t seem depressed at all. She enjoyed herself. There were times when I talked to her and expected a response but didn’t get it. As I think about it now, she hasn’t been very talkative over the past week or so. This comes after a few weeks when she has been. I don’t have an explanation or even a guess as to why. It’s one of those many mysteries. I do know that I like it much more when we have conversations even if they are repeats of the same ones we always have.

Insecurity at Casa Bella

Yesterday was not a typical day. Kate seemed to be in a cheerful mood, but she was also irritable off and on throughout the day. I observed that very early when I told her I thought she should shower before getting dressed. It had been four days since her last one on Sunday. Each of the previous mornings I had encouraged her but let it go when she resisted. I did the same yesterday.

We commonly hear about anger and violence as symptoms of people with dementia. There is another school of thought that suggests that such behavior is not a direct symptom itself but a bi-product of symptoms like confusion and misperception. According to this interpretation, anger and violence are or can be natural responses to the way the brains of people with dementia work (or don’t work).

If I employ this line of thinking to what happened between Kate and me yesterday, I would say that Kate wasn’t just in a bad mood, she may have been responding to the way I told her it would be good for her to take a shower. In fact, I don’t believe I was as gentle in my suggestion as I usually am. If I had thought of a gentler way to do it, she might have willingly agreed to shower. Instead, she dug in her heals. I didn’t push her.

I told her I had her clothes for her, and she thanked me. When I started to help her dress, she was resistant. She said, “I can do that myself.” Ultimately, she had to have my help with her bra and her pants, but she was determined to be as independent as possible. As I helped her, she snapped at me. Then she felt bad and said, “I’m sorry. I shouldn’t have said that.” She clearly understood that was not typical for her. I think her reaction related to my not being gentle enough in my attempt to get her to shower.

While she went to the bathroom to brush her teeth, I went to the kitchen to get her morning meds. Shortly, I heard her call, “Daddy!” I called back from the kitchen, but she didn’t hear me. She called again. “Daddy!” I walked toward the bedroom and said, “Here I am.” This was a time when I thought it was best not to tell her that I am her husband. When I reached her, she looked a little frightened and said, “I didn’t know where you were.”

As we drove to lunch, I played some music that she likes. She didn’t talk much. When she did, it was to comment on the music. She enjoyed it. We had a pleasant lunch. It was as if the problems getting up had never happened. The afternoon also went well. We spent a couple of hours at home. She worked on her iPad a while and then rested on the sofa. After her rest, she wanted something to eat. It was ninety minutes before time to leave for opera night at Casa Bella. I took her to Panera for a bagel. We got home in time to change clothes and leave for dinner. That’s when another problem occurred.

I made a complete change of clothes and had picked out a different top for her. She didn’t want to change and snapped at me. I tried not to push her. She consented, but she wasn’t happy.

As usual, she enjoyed the evening of music. The man with whom we share a table commented several times about her enthusiasm. He and his wife got to observe an example of Kate’s memory problems when she looked at me and said, “And what is your name?” I said, “Richard.” She frowned. I knew that meant she wanted my full name and said, “Richard Creighton.” She frowned again. I said, “Richard Lee Creighton.” That was the right answer.

The biggest problem of the day occurred just before we left. I was seated across the table from her. The seat to my left was empty. I was seated with my back to the singers and moved to the empty seat and turned halfway to the right so that I could see them. When the program ended, I looked at Kate who was disconcerted. She looked at me and said, “Is that you?” It turned out that she had lost sight of me even though I was only four feet diagonally across from her. She was quite relieved to see me.

The man in the seat to my right got up, and I started to follow him out. He stopped to help his wife with her walker. The two of them were standing between Kate and me. I chatted briefly with a man at the next table. When I finished, I went around the couple to see Kate. That’s when I saw that the couple and another man who had been at our table were trying to comfort her. She had been very disturbed because she didn’t know where I was. When she saw me, she said sternly, “Don’t ever do that to me again.” I am sure the three people who were trying to soothe her were shocked that these words expressed so strongly came out of the mouth of someone they had no doubt viewed as very soft spoken.

It amazed me that she had become so anxious in such a short span of time. It couldn’t have been more than a couple of minutes. Of course, with no perception of time, it could have seemed much longer to Kate. I was standing within six feet of her the whole time, but she couldn’t see me. I apologized and told her I would never leave her. As we walked through the restaurant to leave, she continued to be a little upset. My apology must have been too light-hearted because she said, “This is no laughing matter.” By the time we got to the car, she was fine. I played several pieces of music she loved on the way home. That made her even happier. The crisis was over.

It is obvious that Kate’s insecurity is increasing and that I am her “security blanket.” I also think the events of the day illustrate how much her emotional reactions are tied directly to her perceptions of the events around her. Her rational abilities are not working well enough understand what is going on. That misunderstanding leads to insecurity that is sometimes expressed in behavior that is not typical of her.

Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.

A New Marker on Our Journey

This may not be a big thing for anyone else, but it is symbolic of the recent changes in our lives. As we left the car to enter Panera this morning, I said, “We’re going to get you a muffin.” Kate said, “What’s a muffin?”