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Reflecting on Kate’s Intuitive Abilities

As Kate’s rational abilities (remembering names, places, processes, relationships, etc.) continue to fade away, I find myself focusing even more on her intuitive abilities. These are the ones that involve our five senses, sight, suond, taste, smell, and touch. As Judy Cornish stresses in The Dementia Handbook, it is the rational abilities that decline so rapidly with dementia. People with dementia (PWD) continue to experience the world through their senses and from them derive associated feelings. They also hold on to feelings associated with people, places, and things even after the names are forgotten. I have often mentioned how important music has been to Kate and me, but I don’t believe I have given sufficient attention to her other sensory experiences. In addition to sound, sight has been especially important. I would like to relate a few experiences that occurred yesterday that illustrate what I mean.

It began first thing yesterday morning. Well, not “first thing.” It was actually 10:45 when I walked into the bedroom and noticed that Kate was awake. As I walked over to the bed, she smiled at me and gave me a little wave with her hand. From past experience I know that it is unlikely that she remembered my name. It is quite possible she didn’t remember that I am her husband; however, she did recognize me as someone she knows and likes. She responded very much the way she would have if she did not have Alzheimer’s. That was a “happy moment” for both of us, and it didn’t require any of the typical rational knowledge that we normally associate with a husband/wife relationship of fifty-five years. She felt good that I was there, and I felt good seeing her greet me so warmly.

You may recall two other similar experiences I have mentioned before. One involves a friend of Kate’s we saw at a movie several months ago. Kate has always liked her. We spoke for a few minutes. When we turned away to go into the theater, Kate said, “Who was that? I don’t remember her at all, but I  liked her.” Indeed she did. The other involves a negative feeling and is one that has occurred several times. It’s a mug shot of Frank Sinatra that hangs in a restaurant where we eat our Sunday lunch. She can never remember who he is, but she knows she doesn’t like him. That relates to my telling her about the circumstances of his arrest for adultery and seduction. Of course, she doesn’t remember that, only her feeling about it and him.

One of the best illustrations of the pleasure she derives from sight involves the children we see wherever we go. She loves watching them and often speaks to them. Another is her love for beauty in nature. I see this most often when she comments about the trees on the neighbor’s property behind our house. It also occurs when we are driving along the highway or local streets. She often says, “I love the green.” She is referring to the green trees and shrubbery. This experience also extends to sunsets and houses. As we leave our house, she almost always says, “I like that house.” when we pass the last house on our street. When she goes through the “Big Sister” photo book that her brother Ken made, she repeatedly comments on the smiles on people’s faces, even her own. And I shouldn’t overlook the puzzles she works. She often shows me a puzzle and comments about the beautiful colors or the cute kittens, and she works those same puzzles over and over and over. In the coming year I plan to make more visits to two of our local museums and our zoo. These are also things that she appreciates through her visual ability.

Of course, our senses are working together all the time. When I describe the pleasure Kate receives from music at Casa Bella, it is really mixed with the sight of familiar faces and good feelings about those with whom we sit each time. She can enjoy a great evening without depending on any rational abilities at all.

She has had several experiences over the past two days that illustrate the interaction of sight and sound. The first occurred at lunch on New Years. As we entered Panera, we saw a man we often call Montana because he spent much of his life there. He is there almost everyday. He sits outside rain or shine in winter and summer and always wears a cowboy hat. Over the past few years, Kate has always spoken to him when we arrive. After he returned her greeting on Tuesday, she said, “I like your voice. You should be on the radio.” By itself, this is just an indication that she liked his voice, but it is also something that is a common occurrence. She doesn’t say it to everyone, but she does often tell the person or me that he or she has a nice voice. I might add that Kate no longer remembers him as Montana or his real name, but she remembers him and continues to speak with him each time she sees him.

We had two similar experiences with servers yesterday, one at lunch, the other at dinner. The server at lunch has served us for several years. We often talk with her about her daughter who is a competitive swimmer. Yesterday we caught up on our separate travels to visit family for Christmas. As we left, Kate commented on how nice she is and her “natural” way of relating to her customers. With a different server, our experience could have been quite different. The best part might have only been the meal. As it was, sight and sound made for an enjoyable social experience as well.

The experience last night was similar though different in that our server had only served us once before. We didn’t have a history with her. I try to learn our servers’ names and asked her name. A little later, I asked if she were a student. She said she was, and I asked her major. Before we left, we had found out that she used to work at Casa Bella and knows the family of the owners. After we told her goodbye, Kate said, “I’m impressed with her, and she has a beautiful voice.” Again, her pleasure didn’t rely on her rational abilities at all.

These experiences remind me once again that how much of our pleasure derives from our intuitive abilities. For the past eight years, Kate and I have emphasized these abilities. We have enjoyed life and been happy. It is only within the past six months that I have understood why. I thank Judy Cornish for opening my eyes to the value of our intuitive abilities, especially for people with dementia. That becomes their only world.

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The Beginning of a New Year

I let Kate sleep until almost 12:45 yesterday. She was sleeping soundly when I woke her. She smiled and waved. I sat down on the bed and told her I would like to take her to lunch. She said she would like that. When I gave her my hand to help her up, she said, “What’s your name?” I told her, and she asked me to repeat it. She said, “Where are my clothes?” I told her they were on the chair in front of her but suggested she might want to shower first. She asked where the shower is. I took her by the hand and walked her to the bathroom. On the way I said, “Today is Virginia Franklin’s birthday.” She looked puzzled and said, “Who’s that?” I said, “She is Ken’s wife.” She said, “Who is he?” I said, “He is your brother?” She said, “What’s his last name?” I told her. Then she asked, “Who am I?” I told her. When we walked into the bathroom, she asked again, “What is my name?” I turned the shower on for her. When she got in, she said it felt good. Then she said, “I’m awake now.” And she looked and sounded like it.

I left her in the shower and told her she could call me if she needed any help with her clothes. She said, “Why should I need help?” I told her I would put her clothes on the bed by my chair where she usually sits after her shower. In a little while, I went back to check on her. She was in bed running her fingers through her hair. I told her it was 1:30 and that she might like to get ready for lunch. She asked about her clothes. She had bundled them up and thrown them toward the end of the bed. Without asking, I proceeded to get each item of clothing for her. I gave her the opportunity to dress herself. She said she wanted to do it herself, but she kept asking for my help. When she was dressed, she wanted me to brush her hair.

When she was ready, she decided to make up the bed. She had completed one side and asked me to do the other side. I noticed that she had pulled the spread over the bed without pulling up and straightening the top sheet. She was about to put one of several pillows at the head of the bed when I told her I wanted to straighten the top sheet. After I had done that, she picked up a pillow and started to put it on the bed. Then she asked me if that was the way it should be placed. I told her there was a larger pillow that would go on first. She picked it up and placed it. Then she asked if that was the right way. This was one of those little things that happen so often. It struck me that she no longer knew how to arrange the pillows. She had been very particular about that. The large pillows have birds in flight on them. I used to place them the wrong way. She would always correct me. Now she was having to depend on me. She used to make up the bed every day. I remember when she would say, “My mother always said you should make up the bed first thing after you get up.” Three or four years after her diagnosis she rarely made up the bed. I’m not sure what happened, but she started again a couple of years ago. She hasn’t done it as well as she did before, but she does her best. It’s just a little thing, but there are so many of them now.

At dinner, I mentioned something about our having so many good experiences during our marriage. Kate immediately said, “Tell me three things.” Just as quickly, I said, “We had two great children.” She said, “Who are they?” I gave her their names and then went on to some of our travel experiences including our spending a summer in Cali, Colombia when the children were seven and five. That prompted her to talk about giving children experiences that broaden their lives without spoiling them. She felt we had been able to accomplish that.

As we left for home, she said she was very tired and might go to bed shortly after we got there. Then she said, “It may be a little early for bed. I agreed. Then she said, “I can depend on you to help me know what to do.” Then she went into a familiar topic about how comfortable she feels with me. She is beginning to seem more like a little child talking to her parent.

When we got home, she wanted to follow me to the back of the house. She wanted to use the bathroom but didn’t know where to find it. A few minutes later, she used her hand signals to ask if she should sit in her chair in our bedroom where I had put her iPad. I nodded “yes.” It wasn’t long before I said, “I’m glad your my wife.” She responded sternly saying, “I’m not a wife.” I said, “What would you say you are to me?” She said, “A close friend.”

None of these things is new, but it had been a day filled with confusion. It wasn’t like this one year ago.

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Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.