Posted on

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.

Posted on

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.

Posted on

The Value of Social Connections

Maintaining social connections has been a major part of our therapy since Kate’s diagnosis. I have found it especially important in recent months as Kate has declined more significantly. Although she enjoys being with others as much I do, her pleasure is strictly in the moment. On the other hand, I enjoy the anticipation, the moment, and the memories. As a caregiver, being with other people lifts my spirits. I never heard my dad express it, but I know he must have felt the same way as he cared for my mother who had dementia.

Yesterday we drove to Asheville for what turned out to be a better than expected variety of social experiences. As I mentioned in my previous post, I thought it could be our last one and wanted to see a couple of people who had meant a lot to us on our previous visits. A few days before leaving, I learned that one of my Twitter friends and her husband were in Asheville and would be driving back home Sunday afternoon. I asked if we might meet before they left. We decided to get together at our hotel as soon as we arrived.

Our meeting went off without a hitch. I was eager to meet my friend and was eager to introduce her to Kate. This could have easily been a conversation between my friend and me, but she immediately looked straight at Kate and engaged in conversation with her. I was pleased to see that. It illustrated her sensitivity and comfort level with people with dementia. More importantly, she quickly established rapport with Kate. That set the stage for an hour-long conversation before they had to leave. As we were saying our goodbyes, my friend said something nice to Kate who was unable to respond verbally. The tears in her eyes said it all. She was touched by someone who entered her life as a stranger but left her feeling as though she were a longtime friend.

Our experience at dinner turned out to be another touching experience. We had another anniversary celebration. This time at a new restaurant but with a server who has taken care of us at three different places over the past few years. It was good to see her again. Just as I am telling you about her, she had told her associates, including the manager, about us. We met several of them and were very well-cared for. The meal itself was outstanding. At the end of the meal, we had quite a surprise. Our server said the evening was “on her.” She didn’t even accept a tip.

Experiences like these are bright spots in our lives. They sustain us through difficult times, and we have enough of them to keep us going. I feel grateful.

Posted on

Our Fifty-Sixth Anniversary

We had a nice day yesterday. It was our 56th anniversary. Quite a few times, we have been out of town celebrating the occasion. Tomorrow we are making an overnight trip to Asheville, but we’ll be back the following day. The trip is really more for me than for Kate. She can’t remember that it was our anniversary or that we have often celebrated there, but I remember. This is likely our last trip. I would like to see a couple of people who have been especially kind to us on past visits. One is a woman who works behind the desk at the hotel. The other is a server who has taken care of us at three different restaurants and is now working at a fourth. They are like so many others we see on our daily visits to restaurants around here in Knoxville. I want them to know how important they are to people like Kate and me. They all play a vital role in our own “unrecognized” support system.

I did something different with our sitter yesterday. I asked her to meet us for lunch, and she could take Kate back home. After we sat down, Kate played the role of a hostess and said to her, “Tell me your name.” She said, “Mary.” Kate said, “That’s a nice name.” I should mention that Mary is the only sitter who has been with us since I engaged sitters a year and eight months ago. Then Kate proceeded to point to me and said, “I’m his daughter.” Neither of us corrected her.

When I returned home, I found the two of them in the family room where Kate was looking through her “Big Sister” album. I sat down with her, and we went through the rest of the book together. She continues to enjoy this album, but she never shows any improvement in her ability to recognize the people in every photo. She does generally recognize the photo of herself on the cover and often recognizes her brother who is seated beside her.

I had bought an anniversary card for her and written a short note printed with a 32-point font so that she might be able to read it. I read it for her but plan to put it in her memory book. We shared a tender moment as we reflected on our marriage and how fortunate we have been. Then we went to dinner and relaxed with music until bedtime.

She was in bed about thirty minutes before me. When I got in bed, I moved close to her and put my arm around her. I said, “We had another good day, didn’t we?” She agreed. I said, “We had a nice anniversary.” She said, “Anniversary for what?” I said, “It’s our wedding anniversary.” She laughed, something she has done quite a few times when she doesn’t remember that we are married. I said, “Don’t you believe we’re married?” She said she didn’t. I said, “Then how do you explain that we’re snuggled up in bed like this ?” She said, “Well, you’re very nice to talk with.” I said, “I love you.” She said, ‘I love you too.”

Life is different these days, but I hope you can tell that we still enjoy life and each other.

Posted on

The Most Predictable Time of the Day

I’m never quite sure what Kate will be like when she wakes up. Confusion is common. A number of times she has been very disturbed. Sometimes she appears perfectly normal. That is, she doesn’t appear confused until she asks, “Where are we?” Sometimes she seems wide awake and happy. Other times, she acts like I am about to interfere with her rest. She is usually right about that.

Mornings represent a striking contrast with our evenings. She almost always feels completely at ease. I can’t identify a precise time this happens. I know it starts much earlier in the day when we leave the house. That is true whether we leave at 9:30 or 10:00 for Panera or closer to noon for lunch.

In her second book, Dementia with Dignity, Judy Cornish devotes the major portion of her book to “mood” and its relevance for those who care for people with dementia. She talks about the ability of PWD to read their caregivers moods. Having learned the importance the senses of PWD, I don’t find that surprising. This ability has significant implications for relating to PWD. Caregivers face many things they cannot control. It’s frustrating. Controlling mood, however, is something that caregivers can, at least to some extent, control. Whatever the caregiver’s mood, the PWD can read that and is more likely mimic it. If the caregiver is uneasy, the PWD is likely to become uneasy as well.

In earlier posts, I have suggested that Kate becomes more relaxed throughout the day. I have attributed that to the accumulation of information that makes her feel comfortable. She may not be any better at remembering the names of people and places, but she senses a lot of things with which she is familiar from the past. Cornish’s views on mood are making me think more carefully about my role as a “manager” of them. I am more sensitive to the fact that I can play a role in making her more or less at ease.

When I think about it, I believe our everyday experiences tell us one person’s mood can affect someone else. I have often said in this blog that “When Kate is happy, I am happy.” That isn’t unique to the relationship of caregivers and PWD. That is true for spouses, for parents and their children, or even for one stranger encountering another.

There are at least two important differences, however, in the relationship of a caregiver and the PWD. First, the PWD has lost her rational ability to control her emotions or to work with someone else to do so. Second, the caregiver is the one who is “officially” in charge. If any changes are to be made, it is the caregiver’s responsibility to make them.

In relationships between spouses, we generally expect  both people to have sufficient rational ability to play a role in maintaining the appropriate moods (though we know that isn’t always the case). The same is true for strangers. It’s a bit different with parents and children. In this case, parents are in charge, and part of their responsibility is teaching their children learn rational ways to behave in social relationships. Children can learn. PWD can’t.

With these things in mind, I believe I have unconsciously assumed that management of Kate’s mood is part of my caregiving role. I wasn’t aware that my own mood might be making a difference in hers. Well, to be honest, I have felt that coming in to wake her in the morning has sometimes made her grumpy. That seems legitimate. If were sleeping soundly and didn’t see any reason to get up, I might be grumpy too. That is why I started waking her up so gently. I usually play music that I know she enjoys for 15-30 minutes before making an effort to rouse her. Even then, I wake her gently and allow plenty of time to avoid my rushing her.

Following this procedure seems to work, but not always. That is when I have to work harder not to push. I try to be very careful in the way I speak to her. I am as calm and relaxed as I can be. There are times when I say, “You don’t have to rush. You have plenty of time.” She sometimes doubts me and says somewhat gruffly, “Are you sure?” I continue to be calm, and her mood begins to change. It isn’t unusual for her to apologize for the way she spoke to me.

This isn’t always easy for a caregiver. For many, it’s very hard. That’s because our emotions often play such a key role in how we respond to things that irritate us. The role of a caregiver demands a greater emphasis on our rational skills than our roles in other relationships. We have to double our efforts. Our loved ones cannot do it. They have lost those skills.

Let’s go back to the fact that Kate’s mood is at its best in the evening. I believe creating that mood starts in the morning when she gets up. It’s no challenge at all if she wakes up in a good mood. There is little work to be done except to reinforce it throughout the day. If she is grumpy, however, it’s going to require a rational control of my responses in order to shift her mood. I am grateful she responds so easily. I love the reward of a good mood that peaks in the evening. It’s a great way to end the day.

Posted on

Bedtime Conversation

I am glad to report that the rest of our day yesterday went well. It was a good day. Once again, I want to underscore that did not mean any improvement in Kate’s memory or her confusion. In fact, the past few days she seems to be worse. I say it was good because she was happy and that we enjoyed ourselves.

Throughout the day she couldn’t remember my name and our relationship. Neither could she remember her own name. The difference from the morning was her not showing any signs of being frightened. When she wanted to know my name or hers, she asked as naturally as one might say, “Would you pass the butter, please?” The day ended in a conversation that was just that natural.

Kate got in bed about thirty minutes before me. The past few months I’ve been playing a variety of soft music while we go to sleep. Most of the time I play instrumental music. Last night I put on an old Nat King Cole album. When I got in bed, she said, “I like that. Who’s singing?” I told her. She asked, “What do you want me to do in the morning?” I said, “Well, we’re having lunch with a couple we know from Casa Bella’s music nights. We’re supposed to meet them at noon. I’ll probably get you up around 10:00 so that you will have time to shower and dress.” She said, “Who’s that singing?” I told her again. She said, “Tell me exactly what we’re going to do tomorrow.” This time I repeated what I had said before but added that we might drop by to see a friend who just returned home from the hospital and rehab and then come back to the house until time for dinner. She said, “Who’s singing?” I told her again. She said, “Tell me what we’re going to do tomorrow. Again, I repeated myself. She said, “Who’s that singing?” I said, “Nat King Cole. That’s one of our oldest albums (now streaming from Amazon rather than the original LP), and we’ve been together a long time.” She said, “How long?” I said, “Fifty-six years, and I still love you.” She said, “I love you too.” I said, “We have a lot to be grateful for.” She said, “Like what?” I said, “Well, we have two children that we’re very proud of.” She said, “We have children? Are we married?” I said, “Yes, we’re married and have two children.” She said, “What’s your name?” I told her. Then she asked her name.

We went through two or three more rounds of these questions and answers before Kate said, “I’m going to sleep now.” I told her I was going to do the same. It wasn’t long before we were both asleep. I know I was.

Posted on

More Confusion and Anxiety

Kate had another anxiety attack this morning. I had just come out of the bathroom and was walking to my closet to get dressed when she said, “Hello.” She sounded quite normal. I walked to the bed and asked if she wanted to go to the bathroom. She didn’t. Then I sat down on the bed and said, “Good morning. Could I help you with anything?” She looked puzzled and said, “I don’t know.” I recognized that she had waked up and had no idea where she was or who I was. I said, “You seem a little confused. I’d like to help you.” She said, “Where am I?” I told her she was in our bedroom in Knoxville. She said, “Who are you?” I gave her my name and told her I was her husband. She didn’t appear to recognize me. This started a circle of the same questions for the next few minutes.

I told her she was the daughter of Elizabeth and Carl Franklin. She didn’t react. I mentioned our children. She still didn’t respond with any sign of recognition. After a few minutes of these same questions, I told her I was getting cold and would like to come around to the other side of the bed and get in with her. She looked very suspicious. I said, “Would that be all right?” She said yes.

Once I was in bed, I began to talk softly to her about her family and our relationship. None of this sparked the kind of recognition that I was hoping for. I asked her if she would like to look at one of her family photo books. That didn’t appeal to her. It wasn’t long before I mentioned the three-ring-binder that is a “memory” book I made for her. I asked if she would like me to read it for her. She liked that. I brought it from the family room and read through the whole thing. It’s not all that long, but it seemed to do the trick. It has the names of her grandparents, parents, children and grandchildren. It also contains information about our first date, courtship, wedding, places we have lived, places we have traveled, etc.

It probably took about 10-15 minutes for me to read it to her. About half-way through, she began to smile as she recognized some of the people and places. By the end, she was completely relaxed. It looked like she was falling asleep. I told her that I was thinking about getting some breakfast and asked if that would be all right or if she would like me to stay. She said, “Stay.” I remained in bed with her another 10 minutes. She was sound asleep. I got up and dressed and ate breakfast.

After breakfast, I read a couple of Twitter messages. I looked up at the video cam and noticed that Kate was sitting up on the side of the bed. I went back to her and found that she had gone to my closet and picked out a pair of her pants and my underwear. She was wearing them when I walked in. She didn’t seem the least bit confused, but she wasn’t cheerful. As I tried to help her with the rest of her clothes, she was insistent on doing it herself. It wasn’t long before she needed help with her bra and socks and asked for help. I feel sorry for her when this happens. She wants so much to be independent, but she really can’t do everything for herself. I think it is good for her to try, but sometimes I jump in to help before she is ready.

By the time she was dressed, she was back to normal. It was about 8:45. I took her to Panera for a muffin. While there, we had a good experience with one of the employees who works behind the counter. After we had been there about twenty minutes, the employee stopped by our table to speak to Kate. She is a very cheerful person. I commented on that, and she told us that cancer changed her life. She is a survivor and thankful for every day. Kate was energized talking with her.

We’re back home now. Kate worked on her iPad a little while and is now napping. I’m not surprised. She was up at least two hours earlier than normal and that was after being awake for an hour or so around 6:15.

We always seem to recover from these moments/periods of confusion, but I fear they are becoming more common. That coupled with the number of other changes she is making remind me that we are in a different place now. These are more challenging times.

Posted on

A Reminder of How Sharp She Can Be

Today as we left the restaurant where we had lunch, I saw a decal for the University of Miami. I commented that we don’t see many of those around here and that my dad had wanted me to go there mainly because it was close to home. She said, “If you had done that, you wouldn’t have met me.” Intending to be playful I said, “I might have met some glamorous Miami girl.” I waited a moment for her comeback. She paused just long enough that I thought she hadn’t heard me. Then she said, “She probably would have thrown you out in a couple of months.” I told her she was sharp and congratulated her on a perfect reply.

Posted on

An Experiment and Unintended Consequences

The word “experiment” means a trial of some kind. For those of us with a background in research, it usually suggests a rather formalized methodology to determine the relationship among a set of “variables.” Most experiments are not of this nature. They are much less formal (and, therefore, less controlled) experiments that all of use to solve problems we face in everyday life. Caregivers do a lot of this. I am no exception. Let me tell you about an experiment I conducted two nights ago.

As I mentioned in an earlier post, I’m concerned about Kate’s sedentary lifestyle. She doesn’t exercise, and over the past year we have become less active. Now it is getting harder for her to get out of a seat of almost any kind, especially a low one. She walks slowly as though she might be in pain. She tells me she is not feeling pain. I think she is just becoming stiff. We know that she has arthritis in her knees. I’ve been looking for ways to keep her more active physically in order to postpone the day when she needs a wheelchair.

I thought she would enjoy and benefit from some time in our spa. Over the past two years, she has shown no interest in getting in the pool or spa. It’s actually stronger than that. She has resisted the idea, and I haven’t pushed her. I decided I needed to try a different approach. Knowing that she can no longer fit in her old swimsuits, I ordered one online last week. It arrived on Friday. Now all I needed to do was find a way to get her to put it on and get in the spa.

As we arrived home from dinner Sunday night, I told her I wanted her to help me with something when we went in. She said she would. Once inside, I gave her the swimsuit. I told her I had bought it and wanted her to try it on to see if it fit. She agreed. I felt a small measure of success, but the bigger problem might be getting her in the water.

She put on the suit, and I told her I wanted to put on mine as well. I explained that I wanted to experiment with something in the spa and needed her help. She didn’t protest. Getting in the spa required care, but was not too difficult. At first, I tried to help her step down to a step about ten inches from the surface of the water. She was quite nervous. I gave up on that and suggested she sit on the edge of the spa. From there I was able to help her sit on the step and then slide over to the seated area.

Once she was in the spa she was relaxed and started talking. She loved looking around her backyard where she used to spend much of her time tending to her plants. The water was also a comfortable temperature. I showed her how she could move her legs as though she were riding a bicycle. I commented about its being an easy way to exercise her joints. She agreed but only moved her legs for a moment. We spent about an hour talking. Any number of times she said that we ought to do this more often. My experiment was working better than I hoped. I was thinking that next time I could get her to move a little more.

When we were ready to go in, I got out first with the intent of extending my hands to her and helping her get out. She was frightened again and unable to follow my instructions. I finally got her in a seated position on the step inside the spa and on top of the seating area. The problem then was her not having enough strength to get up on her own and my not having enough strength to pull her up without a little help from her. She was too frightened to do anything. I got her to roll over onto the deck of the pool. That is when I discovered how hard it is to get her up when she is flat on the floor and emotional as well. I had another idea. I thought it would be easier if I took it one step at a time. I got on my hands and knees and asked if she could do that. If so, I might be able to lift her. She couldn’t understand what I wanted her to do. I can’t remember exactly what worked, but I got her up after several tries. So much for my bright idea of the spa for exercise.

I haven’t given up totally on the idea. I think it might be easier and safer if we used the pool instead. We have four steps at the shallow end. It should be much easier for her to walk down the steps with my assistance. We could do the same on the way out. I’m going to think about it a little more. I’m not quite ready to try again.

Posted on

Visit With Friends

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

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

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

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