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Changing Times

Kate and I were in Nashville this past weekend to visit our friend, Ellen, who now lives in memory care. We stayed in a hotel overnight to have a leisurely morning and lunch before visiting her. For most of the day, Kate was not herself. She slept later than I expected or wanted. When I got her up, we had less than an hour before checking out and our reservations for lunch. I tried not to rush her, but she felt rushed nonetheless. Her response was different than usual. I am always concerned about her having a panic attack, something that hasn’t happened in several years. Instead, she seemed frightened and pulled herself away from me a couple of times as I helped her with her clothes. I asked if I had scared her, and she said no.

When we got to the restaurant, she was friendly with the people she met. That is not unusual, but the way she spoke to people outside and inside the restaurant sounded like someone who might have had a little too much to drink.

She got along well once we were seated at our table, but her eyesight caused a few problems. She didn’t recognize it was bread in the bread basket. I picked out a couple of pieces and put them on her bread plate along with some butter which was already soft. In a few minutes, she picked up the butter with her hand and put it in her mouth. Apparently, she thought it was a piece of bread. She didn’t care for it and put it down, but she had a glob of butter on her fingers. I tried to help her wipe her hands on her napkin. I first explained what I was I was going to do, but she was confused and didn’t understand. That shook her up for a minute or two.

We both went to the restroom before leaving. When she came out, she had a paper towel in her hand and dropped it on the floor of the hallway. She apparently didn’t see where to deposit it in the bathroom. As we left, she told everyone goodbye in much the same manner as she had done when we entered.

The big surprise of the day came after we had arrived at Ellen’s memory care facility. We sat down with her in the activities room which was vacant at the time. This time we found that we could understand even less of what Ellen said than the last time. Very quickly Kate played a role that was very different than on our other visits. She took the role of caregiver. Ellen was the one she was caring for. She spoke to her as though Ellen were a child, and she was her caregiver. The tone of her voice was very much like that of an adult talking to a small child. She held Ellen’s hand and discovered that it was cold. She proceeded to explain how Ellen could rub her hands together to warm them up. It was much more of a leadership role than she would normally take. Although Ellen has great difficulty speaking, she seems to understand us quite well. She looked a little puzzled and almost laughed a few times as Kate took charge.

We tried to converse for over thirty minutes before I decided to pull out my iPad and play a few YouTube videos of Rodgers and Hammerstein musicals from past BBC PROMS concerts. Initially, both Kate and Ellen were interested. Then Kate saw a few small pieces of debris from a plant in the center of the table. This started a re-run of an experience she had the night of our anniversary dinner in Knoxville when she mistook the tiny bread crumbs as insects and took pleasure in trying to catch them moving. She did exactly the same thing at Ellen’s. The difference was that she became much more absorbed than she had on our anniversary. She completely tuned out of the YouTube videos to watch “the insects.” She was fixated on them for the next 10-15 minutes. In the meantime, Ellen went to sleep. That left me as the only one watching the videos.

I looked at my watch and saw that it was close to the time for a guest to lead the residents at their Sunday afternoon music time. I suggested we join the crowd. What happened then was my biggest surprise of the day. As we walked in, the woman in charge of the program was playing the piano while the residents and a few staff sang. Kate very quickly joined in. She not only sang; she also danced. The leader played a series of very upbeat and familiar tunes to a group our age. Most of them, however, were further along in their dementia than Kate who became the most active participant. Periodically during the songs and at the end of a song, she said in a very loud voice “Woooooe.” It was loud enough that no one could miss it. A mother and her two teenage daughters were standing near us and got a kick out of Kate’s participation. I am sure the leader was pleased. She probably would have liked everyone to respond in a similar way.

So how did I feel about this? I was pleased. It was good to see her enjoy herself so much. As I have mentioned before, she and I often sing in the car. Sometimes I can push her into dancing a little at home, but she was completely unleashed at Ellen’s. Her filter was off. She responded the way she felt. I liked that, and in this situation it was perfectly acceptable. I would have felt very differently if this happened at one of our music nights at Casa Bella. In Ellen’s memory care facility it was one of our joyful moments.

At the same time, I was sad because this was the first time in a public situation that Kate behaved so much like a person with dementia. Until recently, she has gotten along well. In casual contacts, most people would never suspect that she has Alzheimer’s. That is changing now. She seemed a little like the residents around her. Kate is not at their stage yet, but all the signs suggest she is not far away.

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Social Situations

Yesterday we were in two different social situations. The first was at lunch. The other at dinner. Kate responded to the two of them quite differently. Coincidentally, both occurred at Casa Bella.

We had lunch with a friend, Lillian, who is with the health foundation on whose board I served for nine years. Kate has met her on several occasions but can’t remember her. That didn’t matter. She got along quite well. We got off to a good start when we went inside the office to meet Lillian. We were warmly greeted by the receptionist whom I hadn’t seen in quite a while. That was followed by another staff member who passed through the reception area. We chatted briefly before Lillian came out. I should add that most of the staff is aware of Kate’s Alzheimer’s and have always been attentive and kind to her. When Lillian walked out, she was carrying a small basket of flowers for Kate who was thrilled to have them.

Although our lunchtime conversation involved a good bit of talk about the foundation, Lillian was good about speaking directly to Kate. That was especially true at the outset. That enabled Kate to feel she was an integral part of the conversation. I asked Lillian to tell us about her recent experience with neck surgery. One might think that it would have been difficult for Kate to follow and understand. I am sure that it was; however, she did grasp that Lillian was out of the office a while and that the recovery was not easy. Her eyes filled with tears as she reached out to take Lillian’s hand. Kate was touched.

A little later, Lillian invited us to an open house at a camp for deaf children supported by the foundation. She explained to Kate that we had paid for a number of children to attend. Kate was touched by that and wants to go.

Except for the few times she picked up or pointed to her glass of tea and asked if it was hers, an observer might not have recognized that she has Alzheimer’s. Lunch was a good experience for her.

Dinner was quite different. I think she was confused from the start. Although we sat with the same couple we always sit with, we were joined by three other people. At first, I was seated diagonally across from Kate. That meant that she forgot where I was several times. I moved to be next to her. She forgot that I always order for her and was nervous about ordering herself. I told her I would take care of it, but she couldn’t remember. She repeatedly picked up a separate bar menu and tried to read it. One time she asked the woman next to her to read it for her. Each time I explained that it was the bar menu and that I was taking care of or had ordered her meal. Once we had ordered and the menus were removed, she didn’t have to worry about that anymore.

Then we faced two additional problems. First, the noise was so great before the music started that it was hard to hear what others at the table were saying. In addition, Kate was in the middle seat of the three seats on our side of the table. No one was seated across from her. The noise was the greater problem, but I am sure she felt alone because of the seating arrangement.

The second problem of the evening was the music. It was jazz night. The musicians were outstanding, perhaps the best we have heard there. Typically, however, the program includes a predominance of old standards with the vocalist playing a central role. Last night, it was almost entirely instrumental. I think there were only three standards. Kate didn’t seem unhappy, but she didn’t express any of the enthusiasm that she normally does.

On the way home, she was fine. The contrast in the two situations was striking and illustrates the kind of situations that are easier for her than others. I may need to be more sensitive to this in the future. It is also possible that we might drop the jazz night before I feel the need to do that for the opera and Broadway nights. Coincidentally, I spoke with a church friend yesterday morning. She had mentioned our getting together for lunch. She said something about inviting a couple of other people. I told her that Kate does best with just one or two people besides us. I’m glad I said that.

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Morning Incident

I continue to celebrate the fact that Kate and I have gotten along so well, but that is not to say everything is all right. As she sinks further into the depths of Alzheimer’s, she has become much more insecure and dependent on me. I have mentioned several times when she has experienced attacks of anxiety or panic. Something similar, though less intense, occurred yesterday morning.

Watching the video cam, I noticed her turning over in bed. I thought she might want to get up for the bathroom. For a short time thereafter, she didn’t move or make a sound. Then she said something that sounded like “Hey.” I headed to the bedroom. From the door, I saw that she was awake and looked relaxed. She didn’t say anything. I walked over and sat down on the bed. She looked uneasy. I said, “You didn’t know where I was.” She nodded, and tears welled up in her eyes as though she was about to cry. I said, “You probably didn’t know what to do.” She nodded again, and I said, “You don’t have to worry. I am always here. I would never leave you alone.” I talked with her a few minutes. She felt secure again. Then I asked if she would like to get up or rest a little longer. She wanted to rest. I asked if she would like me to bring my computer into the bedroom and stay with her. She did. In a few minutes, she was sound asleep.

This was a little problem. It was not intense, and it lasted only a short time. Had I not gone in when I did, she might have become more worried, at least for a longer time. It’s a good reminder of how important it is to be with her and to be observant. It is also a sign of her insecurity. I don’t find that surprising. If I didn’t have any memory, I would be frightened as well.

Follow-up

I remained in the room with her until it was time for me to get her up for lunch. She took a shower and then got back in bed. It took me three tries over thirty minutes to get her up again. I was careful not to push her. When she finally got up, she wasn’t smiling. I asked if she were upset with me. She indicated that she was. When I asked why, she said, “I don’t know.”

I helped her get dressed, and she seemed fine when we left for lunch. She was definitely not as cheerful as she was yesterday, but we had a nice time.

The rest of the day went well. We relaxed at home until time for dinner. She did not nap at all. That is very unusual. She worked on her iPad. After dinner, we watched our granddaughter’s high school graduation online from Texas. She received her diploma early. Then I took my shower and prepared for bed. To my amazement, Kate continued to watch for another hour even though she didn’t know anyone. I went in to bring her to bed. She said she wanted to sleep on the sofa where she was sitting watching the graduation. I encouraged her to come to bed, and she finally consented.

I don’t know what was going on in her brain, but she wasn’t as happy as she was the day before. Once in bed, she was very relaxed and seemed fine. I can’t help wondering what she will be like this morning.

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Another Bedtime Conversation: An Example of Kate’s Intuitive Thought/Ability

In yesterday’s post, I talked about the challenges that Kate faces in some types of conversations. I also noted that we converse about as much as we did before Alzheimer’s. I failed to say that until I took her off of Trazadone a year ago, she didn’t talk much. Most mealtimes we hardly spoke at all. Looking back, I think she may have been taking a higher dose than she needed. She was very sleepy. I am glad to say that is no longer an issue. We do have conversations, and some of those are unlike anything I could have imagined. Night before last we had one of those.

As usual, Kate was still awake when I got into bed. I moved over close to her and commented on what a nice day it had been. I told her I loved her. She said, “I like you. I even think I love you.” She went on to say that she was not ready to marry me. From there, she took us in a very different direction.

She talked about a “project” that she was thinking about. She never got specific, but she wanted to do something for people who have chronic financial problems. She expressed a desire to recruit a large number of people who could join together to address these issues. She wanted me to work with her. I told her I would. As with other conversations, she was very repetitive. She would circle back around and say the same things she had said earlier. She was confident with the two of us working together we could make a difference in people’s lives.

This conversation was another good illustration that her feelings are working. She can’t remember any facts, but she retains a sense that there are people with many needs. Her heart goes out to them. This particular idea about initiating a project to help people in need is just one example of that. It is also apparent when she talks about her mother, she invariably talks about her mother’s kindness to others and her desire to “help people.” Her mother was indeed kind, but I view this mostly as an expression of Kate’s personal feelings about relating to other people. It is also evident in the way she interacts with strangers. She is a caring person. This is not something new, but it is more pronounced now than in the past. It is certainly a more positive symptom of Alzheimer’s than one usually imagines.

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Kate and Conversation

Like other caregivers I know, I often miss the kind of conversations Kate and I used to have. Much of our ordinary conversation requires remembering things she can no longer retain in her memory. All is not lost, however. Caregivers learn to talk about things that their loved ones can also talk about. On an average day, I’m not sure that Kate and I talk any less than we did before Alzheimer’s, but the content of those conversations is different and repetitive. We are both happy with this approach.

Social situations can be very difficult for people with dementia. I wish I could fully understand what’s going on in Kate’s head when we are in large groups. I know it can be very confusing for her. Saturday we attended an 80th birthday party of a man who had been a close friend of my dad’s. There was a large crowd, and we knew only three people besides Dad’s friend. It was wall-to-wall people. She sat in a chair and was mostly silent the hour or so we were there. Withdrawing is one way to handle situations like this. I stood by her the whole time to prevent her being anxious.

My brother, Larry came over for the birthday party. We had planned to go out to dinner with him, but the weather kept us inside that night. We ordered a pizza and ate right here at home. I can’t remember the last time we had done that. I would say at least six or seven years.

We hadn’t seen Larry in quite a while. He and I immediately entered into a conversation that wasn’t of interest to Kate. She worked on her iPad until we ate dinner. I felt bad about that. Fortunately, the conversation took a different turn over pizza. Larry has a farm and brought some fresh blueberries for Kate. That led to a conversation in which he pulled out his phone and showed us pictures of his blueberry and raspberry plants as well as his asparagus. At first, I thought this might not be of interest to Kate, but she seem quite interested. She even asked questions that got Larry talking more about the farm. Again, I felt Kate’s interest might be short-lived, but she seemed quite engaged. I know it was impossible for her to follow everything he said, but she didn’t tune out. It turned out to be a good experience. My own view is that she was an important part of the conversation. She wasn’t being overlooked the way she had been before dinner. I let the two of them talk together while I cleaned up the dishes. I was happy to see her enjoying herself.

Yesterday morning, Larry, who had spent the night at a hotel, came back to the house around 9:45. That gave us some time to catch up on a variety of things that would have been of little interest to Kate. She slept until almost 11:00. Then the three of went to lunch. Everything went well until the end of our meal. As we were talking, Kate got confused over some of the things Larry talked about. At times, I tried to interject and explain. It was a time when it appeared that she really wanted to understand but couldn’t, and her confusion escalated. I feel reasonably sure that at that point in the conversation she didn’t know that Larry was my brother. She asked him directly, “Who are you?” I explained that he is my brother. She asked him his name, and he told her. I can’t remember, but she may have asked mine as well. She must have because I remember her asking my last name. She didn’t realize that I had the same last name as Larry. (That is not unusual. It is typical. This happens all the time when we are going through her family photo albums.) The server dropped by the table. She and Larry talked a bit. Kate pointed to Larry and asked me who he was. When I told her he was my brother Larry, she said, “What’s his last name?” When I told her, she burst out laughing. The server asked what was funny. Kate said, “His last name is Creighton.” She said this as though it was a silly name. Then, looking at the people at the table across from us, she said something about his name. I don’t remember what she said.

Despite her laughter, Kate was irritated with my brother. I can’t explain it. I have a hunch that she somehow felt like an outsider to our conversation. She was rather abrupt with him and made some reference to the way the two of us (Larry and me) act when we are together. She was not in a good humor as we made our way to the door. When we got outside, she immediately apologized to Larry and said something like, “You’ll have to forgive me. I’m trying to not to be this way.” It was as though she were carrying a grudge from the past. I don’t understand.

When we got in the car, she told me she didn’t want to talk. I told her I would turn on some music that she would like. I didn’t say a word until we got home. When we were a few blocks away, I reached over and squeezed her hand and held it a moment or two. She squeezed back and smiled at me. She was herself again.

This was the first time I’ve seen her respond this way with anyone. It wasn’t just a momentary reflex. She was bothered over a period of minutes. She was obviously offended. My best guess is that Larry and I drifted into a conversation that was of greater interest to us, and Kate felt excluded. This will make me more sensitive about conversations in the future. I don’t want Kate to feel this way again.

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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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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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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.

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A Good Day

After resting so much the day before, I hoped that Kate would be up a little earlier yesterday. I got my wish. I didn’t have to wake her. She wasn’t up early enough for Panera, but we did get to lunch shortly after 11:30. She was happy, and we enjoyed our lunch time together.

It didn’t surprise me that she wanted to rest as soon as we got home. She is doing that quite regularly these days. We had hair appointments at 3:00. About 2:25, I reminded her of that, and she got up right away. She took a little time to brush her teeth and use the bathroom, but we arrived for our appointments almost ten minutes early.

When we returned home, she worked on her iPad until time for dinner. That was a little over an hour. She continues to have trouble with the puzzles but did pretty well.

The best part of the day occurred at home after dinner. I have mentioned before that Kate often says, “That goes in the book.” She does that whenever we are talking about things that happened in the past. Almost a year ago, I jotted down a number of things that I thought were of importance to her. That includes the names of her family (grandparents, parents, brother and his wife, our children and grandchildren) our courtship and marriage, places we have lived and traveled, as well as a couple of letters I had sent to my parents when we were dating, one from Kate’s mother to my parents during that same period of time, and another from our son that he sent to us after our 50th anniversary. I put the information in a three-ring binder and included some family photos in the back.

After dinner, I asked Kate if she would like to look at it while I watched the news. She did and enjoyed it. It was difficult for her to read, and she asked me to read parts to her. I was pleased that she was interested. She hasn’t expressed much interest until the past few days. She prefers her photo books. I suspect her memory loss may play a part in the recent appeal of reading about things that have been so much a part of her life.

Going through the book gave a little more understanding of the challenges she has with reading and her photo books. For example, I read the letter from our son. I, of course, told her it was from Kevin. In addition, he talks about us and our marriage from his perspective throughout the letter. When I finished with “Love, Kevin,” she was almost in tears. She said it was beautiful and thanked me for writing it. It’s another illustration of the weakness of her rational abilities and the strength of her intuitive ones. She couldn’t remember that it was from Kevin nor pick up that it was from him by what he said. She was, however, able to pick up on the feelings expressed. She may have assumed it was from me since I read it to her.

Another example involved four photographs I had just added to the binder. One of those is of her grandmother that was taken in Lucerne, Switzerland in the mid-1930s. The other is one of us taken in the same spot in 2015. I had them enlarged to 8 x 10s so that she could see them more easily. I told her who the people were and asked if she noticed anything about where the pictures were taken. She didn’t understand what I was asking. I said, “Do you see anything similar about the two pictures?” It took a lot of help on my part for her to see they were taken at the same place. She would never have noticed without my help.

The other two pictures were of her mother taken on the boardwalk in Quebec City with the Chateau Frontenac Hotel in the background and one of Kate taken in the same place. Her parents had stayed at the hotel on their honeymoon in 1936. We stayed there our on our 41st anniversary in 2004. I went through the same routine with these pictures. I’m not sure she ever understood what they had in common. If she did, it didn’t generate any interest. She was, however, interested in the binder’s overall contents. I am glad about that because it gives her something else to enjoy besides her puzzles and photo books. I also intend to add more information. There is plenty of material I can add. The challenge is how to package it in such a way that it is not overwhelming.

By the way, I originally printed it in a 14-pt. font. I have gradually increased it to 36. I think that may be where I stop. She seemed to be able to read that.