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A Nice Visit with Ellen

I try to arrange for us to visit about once a month with Kate’s good friend Ellen who lives in a memory care facility in Nashville. Our last visit was the Saturday before Christmas. On Friday, I realized that we are going to be tied up the next three Saturdays and scheduled a trip to see her yesterday. It was a day when everything seemed to go well. Kate surprised me by getting up around 10:30. That gave us time for lunch and still get away before 1:00. That gets us to Nashville later than I would like, but that works best for Kate.

The visit with Ellen was a good one. We chatted for about an hour. That is challenging because it is more difficult to understand her with each visit. We could only understand about  a quarter of what she said. Fortunately, her mind is clear enough to understand us. We ask lots of “yes-or-no” questions. She either speaks the words or nods to answer. Her son is a Facebook friend who went to Clemson. I brought up some of his recent posts that included photos of his children and his trip to the Clemson/Alabama game. She enjoyed seeing those.

As we have done on our visits over the past six months, I played some YouTube videos of musical performances. Yesterday I focused on opera. She wasn’t familiar with Kristine Opalais and Jonas Kaufmann, so I played several arias and a duet of theirs. She was entranced, and so was Kate. It’s a very touching experience for the three of us. Ellen and her husband, Gordon, were neighbors of ours in the early 1970s. Our children grew up together. We celebrated many birthdays, holidays, and other special events together. Ellen was Kate’s closest friend in Knoxville. After Gordon’s death in 2013, Kate and Ellen became even closer. They had lunch together every Monday while I was at Rotary and got together at other times as well. Ellen’s stroke almost three years ago changed both their lives. With Ellen’s limited ability to communicate, music has been a powerful way for us to connect. It is truly an emotional experience. Kate was moved to tears through much of the music yesterday and frequently reached out to grab my hand. It will no doubt become even more difficult in the future as both Ellen and Kate decline. In the meantime, I intend for us to continue our visits and sharing a connection that only music can provide.

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Does Kate know me or not?

In my previous post, I focused on the inaccuracy of our stereotypes (generalizations) of people with dementia. In this post I am specifically thinking about caregivers and the conclusions we reach about the behavior of our loved ones. Many of those situations involve a judgment about things like what stage of the disease the PWD has reached, what she is able to do, and can she be left alone. Last spring, I was trying to draw a conclusion about Kate’s sleeping later in the morning. I wasn’t sure whether that represented a few isolated discrepancies from her previous sleeping pattern or the beginning of a new stage of her disease. After months, I finally recognized that she was, and still is, making a real change.

One of the judgments that caregivers frequently make involves what their loved one knows. It hasn’t happened recently, but I’ve been asked if Kate still knows me. That’s a good question. It’s one that seems to imply that she either knows or doesn’t know me. The best answer I can give right now is that “sometimes she does and sometimes she doesn’t,” but that doesn’t tell the whole story. Let’s take an example of something that happened at lunch a couple of days ago.

When she got up that day, her conversation suggested that she knew me. She didn’t ask my name or relationship, and she behaved in a manner that is consistent with the way she has behaved toward me for years. At lunch, we talked about our children. I presumed that, at that moment, she knew I was her husband. Moments later she said, “Who are you?” I asked her if she meant my name or my relationship to her. She said, “Your name first.” When I told her, she said, “And what are you to me?” I said, “I’m your husband.” Then she asked me to tell her my “full name.” I said, “Richard Lee Creighton.” She tried to repeat it, but only got the first name. She asked me again. Over the next few minutes, she asked a few other times. Once she asked her own name.

In most ways this experience was like many others we have had. In this particular instance, however, I was struck by how blurry the line between knowing and not knowing can be. As usual, I was also amazed at how comfortable she is when she repeatedly asks my name and her own. She displays no sense of hesitation about asking nor does she seem concerned that I might think it strange when she asks. She asks the way she would ask a stranger’s name. At the same time, her words and manner of relating to me suggest she knows me. I feel certain that is the way an observer at another table would have interpreted the situation.

I try not to quiz her too much about what she “knows,” but earlier this week I did. She asked my name and relationship. I told her, and then I said, “Tell me this. You didn’t know my name or that I am your husband, but you did seem to feel that I am someone you know. Is that right?” She said, “Yes, of course.” I didn’t push for any more. As I have surmised on other occasions, she usually recognizes that I am someone with whom she is familiar and someone with whom she is comfortable. It’s just that she sometimes doesn’t remember my name or our relationship.

After living with changes like this for a while, I would say there are different levels of knowing. One is to know my name. Another is to know that I am her husband. Another is to know that I am someone she recognizes. If I were to guess right now, I would say that (1) she usually doesn’t know my name, (2) about half the time she knows I am her husband, and (3) she almost always recognizes me as someone she knows and trusts.

Prior to six months ago, I believe she always knew my name and that I am her husband. She’s made a significant change in that time period. I suspect the next six months will bring more dramatic changes, but I expect she will continue to recognize me as someone she knows and trusts for some time to come, at least that is what I am hoping. I’m also beginning to think of that as the deepest kind of knowing. It’s similar to what we felt when we first met. We didn’t know anything about each other, but our intuitive abilities led us to sense a connection. That is something I don’t want to lose.

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A Lesson for Alzheimer’s Awareness Month

One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.

This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.

So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.

Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.

Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.

I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.

We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.

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Afternoon Naps

For what I believe is the third day in a row, Kate has gotten in bed right after returning from lunch. There were times like this in the distant past; however, they usually occurred after she had gotten up early that morning. She has often talked about being tired, but she has never acted on that the way she is doing now. She won’t rest as long today because I made an appointment for her to have a massage at 3:30. After that, we will have about an hour before leaving for jazz night at Casa Bella. It will be telling if she rests again during that break.

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Sleep and No Sleep

Kate’s sleeping continued to have an impact on our schedule yesterday and early this morning. I wasn’t too surprised when she got up earlier yesterday. It was around 10:00. She got up and showered and then went back to bed. When she goes back to bed like this, she doesn’t usually go back to sleep. Most of the time she just relaxes and runs her fingers through her hair. That is what she did yesterday. Had I let her, she might have stayed in bed too long for us to have lunch together. I didn’t want that, so I got her up and dressed. She was a bit more assertive about her independence getting dressed but had to ask for help several times. Our timing worked out well. Without rushing, we were able to get to lunch and back home about fifteen minutes before Mary arrived.

When we got home, Kate followed me to the bedroom and got in bed just as she had done the day before. That gave me a few minutes to talk with Mary before I left. She told me that Kate didn’t want to get up the last time she was here and that she (Mary) didn’t want to push her too hard. I told her she did the right thing although I regretted that it was 3:15 before she got up.

I walked Mary back to the bedroom before I left and told Kate I was going to the Y. She gave Mary a warm greeting. When I returned, they were talking in the family room. I didn’t have time to talk privately with Mary, but I got the impression that Kate had rested most of the time I was gone.

Around 3:00 this morning, Kate said, “Hey.” I said good morning and told her the time and that she still had a good bit of time to sleep. We didn’t talk much, but I could tell she was awake about an hour.

At 4:30, she got up to go to the bathroom. She got back in bed about twenty minutes later. That put me pretty close to the time I feel comfortable getting up. Having been mostly awake since 3:00, I decided to sleep a little longer and got up an hour later.

Apart from the way her sleep has changed our routine, we had a good time together. She did tease me a little after getting up yesterday morning, but it wasn’t mean-spirited at all. So we enjoyed the day. We just had less time together.

I don’t know what to expect for today. Will she get up early again because of all the sleep she got yesterday, or will she sleep late because she lost a couple of hours sleep during the night? I’m guessing it will be the latter. Fortunately, we have no special commitments. My only concern will be getting something to eat before noon. I have some granola I can snack on to hold me over until she is up.

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The (Daily?) Report on Sleep and More

Each day seems to give me added reason to believe that Kate is noticeably drifting into another stage of her Alzheimer’s. That’s been true the past two days. As I had suspected, she got up earlier two days ago (Monday). I was in the kitchen when she walked in at 9:25. She didn’t say a word. She just looked at me. I said good morning and asked if I could help her. She said, “I want to take a shower.”  I got up from my chair and gave her a hug. Then I took her hand and told her I would take her to the shower. Like a little child with her parent, she held my hand until we reached the bathroom. Then she wanted me to tell her exactly what to do. I left her in the shower. I checked on her in another fifteen minutes and found that she was back in bed.

Since the sitter was coming at noon, I decided to let her rest a little longer. I got her up over an hour later. That gave me enough time to have her dressed for lunch. I called the agency and asked them to have Valorie meet us at Panera. The timing worked out well. Valorie arrived right after I had ordered Kate’s meal. Although I am sure Kate did not remember her, she gave her a warm welcome, and I left while they waited for Kate’s lunch to be ready.

Even though I had let her rest another hour, having gotten up earlier that morning caught up with her during the afternoon. She was resting in a chair in the family room when I got home at 3:30. Valorie said she had not been resting long, but Kate did not acknowledge me when I came in the room or after Valorie had left. I went over to speak to her. She was awake but tired. After a while, I asked if she would like to lie down on the sofa. She did and continued resting for another two hours.

As in the past, I wondered if she would be able to go to sleep at her regular time that night. At 9:30, she was enjoying working puzzles on the iPad and didn’t want to go to bed. She did, however, accept my suggestion that it might be better to go to bed so that she wouldn’t sleep so late yesterday.

I let her sleep undisturbed until 11:00 yesterday when I turned on some choral music that she likes. At 11:15, I went to her bedside and sat down. She silently acknowledged my presence with her eyes. I asked if she were ready to get up. She nodded that she was not. Then I said, “Your husband would like to take you to lunch.” She said, “You’re not my husband. I wouldn’t marry you.” I can’t remember exactly what she said after that, but it was something that made me think she thought I was Frank Sinatra. I didn’t push her on this. I asked again about getting up. She said, “I’m not getting up.” Then I brought up lunch again, and she said she would like to eat. I told her I would help her get up and dressed. To my surprise, she accepted that. My only explanation is that she is getting used to doing what I suggested and did it reflexively.

Once she was up and dressed, she was in a talkative mood. She teased me (a bit harshly) as we were about to leave for lunch and in the car. Once inside the restaurant, we were greeted by one of our regular servers whom we hadn’t seen in several weeks. We chatted with her as we ordered our meal. I think that changed Kate’s tone a bit. We had a very nice conversation at lunch. During much of the time, I was trying to explain to Kate something I had said or something that the server and I had talked about. Some of our conversation had to do with music. The music on the restaurant’s sound system was strikingly different today. It was mostly 50s music. Kate and I recognized almost every song.

After lunch, we went to Best Buy to return a DVD player that I bought a couple of months ago. It is a different brand than the Samsung TV to which I have had it hooked up. It had never operated as smoothly as the Samsung player we had previously. The trip to Best Buy turned out to be another social occasion. Kate was in a playful mood and talkative.

When we went to the customer service counter, I noticed that the man in front of me was returning one SONOS audio speaker for a SONOS subwoofer. I also have a SONOS system and mentioned that to him. That led to a conversation about our experiences with it. As he finished up his transaction, Kate went over to him and put her hand on his shoulder, pointed to me, and said, “I should have warned you about him. He just talks and talks.” After he left and I was explaining why I was there to the woman behind the counter, she got involved in a conversation with the young man behind us. I didn’t catch all that was said, but she was joking with him, probably about me.

When I was finished, I went to the back of the store where the DVD players are located. I got a salesman right away and told him what I wanted. He led me to it, and we quickly took care of the transaction. As we started to walk away from him, I saw the display of SONOS equipment. I mentioned my audio system. Kate then went over to him and said, “Don’t let him get into this. He will talk all day.”

On the way out we walked past a display of baby monitors. I’ve been thinking about buying something like that to monitor Kate in the morning while I am in the kitchen and stopped to look. Kate had no interest in the monitors, but there were two large photos of babies behind the monitors. She loved them and commented on their beautiful smiles. A moment later, we passed by a life-size cardboard display of a man. She stopped and said goodbye to the man in a way that was very typical of a small child.

When we got home, Kate walked directly to the bed, got in, and pulled the covers over her. She remained in bed for over two and a half hours before I went into the bedroom to see if she was ready to get up. When I sat down on the bed, she looked up at me. I told her we would be leaving for dinner in forty-five minutes and asked if she were ready to get up. She indicated she wasn’t. I told her I would let her rest a little longer and would get her up for dinner. She said, “Good.” This was the first time I had let her rest so long. This meant that she had been up only three and a half hours all day.

As promised, I went back a short time later and got her up. We had nice dinner. As she often does, she said she would probably “crash” when she got home. She didn’t, but she did get to bed at 9:45. That is pretty typical. The question now is what time she will get up this morning. This is another day for the sitter. I hope she will be up in time for us to have lunch before Mary arrives. If not, I’ll let Mary take care of everything.

Sleeping late has made a significant difference in our daily morning routine. I can’t help wondering if we are moving toward a similar change in our afternoons. Just as we have seen a dramatic decrease in the number of visits we make to Panera in the morning, we are beginning to go less often to Barnes & Noble in the afternoon. Our lives are changing.

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Update on Clothes

I recently mentioned the number of recurring themes in my posts. From very early, one of the most persistent ones has been Kate’s clothes. When I say “clothes”, I really mean a variety of issues that involve clothes. At first, it was simply finding clothes for Kate to wear. She didn’t hang them up after wearing them. They were scattered on the floors and furniture of three bedrooms. The problem was exacerbated by her gaining weight and not fitting into her clothes. That led to issues of buying new ones. We went to the stores where she had shopped for years. They tended to stock nicer lines of apparel than suited her needs. They were also expensive. She still wanted to be actively involved in the purchase decisions. She selected things that she wouldn’t wear every day, and she attended fewer special occasions. She was becoming less and less attentive to soiling her clothes. Over time, she started wearing her good clothes to work in the yard. At first, I would get her to put on her yard clothes, but later I gave in.

One of the big steps forward was Kate’s cleaning up the mess in the three bedrooms. We never talked about it. One day she just started picking things up. As she did, I starting discovering the ones that fit and giving the ones that didn’t to our housekeeper. Then I arranged the clothes in the closet she used most often. I put all the tops on the left side arranged by color. I put all the pants on the right side, also arranged by color. Until recently, that had kept me busy because Kate never hung them back in the places I intended.

Kate continued to gain weight. That meant I had to buy larger sizes than in the past. I finally resorted to catalog shopping. That worked very well. I have bought pants, tops, sweaters, jackets, underwear, shoes, and socks. I had to experiment a little with the sizes. That meant a few returns on some of my first orders and off and on since then. I have found several brands to choose from. I have also settled into pants that stretch at the waist. I also buy at least two and sometimes three identical pants in the same color. Online shopping has certainly made my life much easier.

She was still picking out the clothes she wore each day six to eight months. That meant that she sometimes picked out something that was not quite right for either the weather or the occasion. Neither of us liked my having to be so involved with her daily attire.

Now everything involved with clothes is easier except for keeping them clean. The problem isn’t getting her clothes soiled from working in the yard. She no longer works outside. It arises from toothpaste she gets on her tops and food and sauces she gets on tops and pants. That has me washing a lot more now than in the past. OxiClean and I have become good friends. The washing itself isn’t a big problem. In fact, I find that washing and folding clothes are almost therapeutic. That has surprised me because I resisted taking over the laundry responsibilities for a good while. Initially, I tried to prevent as much soiling as I could. Of course, that was a battle I couldn’t win. It’s still hard for me to deal with her clothes getting dirty so quickly. It is not unusual for me to get her a clean top to wear and discover it has toothpaste across the front of it before we leave the house. That’s the OCD in me coming out and is my problem, not hers.

Issues surrounding her clothes present very little problem now. She has things that fit. I know where they are. When she needs something new, I know how to get it without leaving the house. Some of this has come at a cost. The major reason some things are better is that Kate is now more dependent on me for help. I determine what she wears day and night, and I am increasingly taking more responsibility for getting her dressed. I don’t mind any of those things; however, I wish for her that she were able to do more for herself. That’s a sad thing.

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Follow-up on Sleep

Kate slept about two hours yesterday afternoon. We had about forty-five minutes before I had planned for us to have dinner. I suggested looking at her photo albums. She liked that. We started with an album of her father’s family. She was quite interested and talked about her feelings for her family as we went through it. When we finished, we picked up the “Big Sister” album that her brother Ken had made for her this past spring. The photos in this one are larger than the other album. That made it much easier for her to identify the people in the pictures. Once again, she is attracted to the same pictures she mentioned previously when we looked through the album. One of those pictures is of her with her brother when she was about five or six and Ken about three. She almost always talks about the two of them in the third person. “Aren’t they cute.” “Look at their smiles.” Sometimes it is clear that she doesn’t realize that she and Ken are the two children. Other times I think she does. She also pays particular attention to the smiles. The pictures she likes best have nice smiles.

After dinner, we came back home where I put on YouTube videos. This time I chose a couple of opera singers, Kristine Opalais and Juan Diego Florez. I played a good two hours worth before we went to bed. She enjoyed them and didn’t want me to turn them off, but I told her they were videos, and we could play them again whenever we wanted.

She went to sleep rather easily and slept until 6:00 this morning when she got up to go to the bathroom. We have the sitter today. I also go back to Rotary after the Christmas and New Years break. If necessary, I’ll let Valorie get her up and take her to lunch. I suspect, however, that she might be up earlier today. She has had quite a bit of sleep in the past few days.

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Addendum on Sleep and Confusion

Kate still seemed tired this morning after waking her. I let her stay in bed another thirty minutes before getting her up for lunch. I am sure she would have remained in bed much longer without my encouragement to get up. She was happy to have me help her get dressed. At one point, I asked if she thought I was rushing her. She said, “No. You’re a good daddy.” As I had done earlier, I let it go without correcting her about my being her daddy. On the way to lunch, she said something else about my being her daddy. A few minutes later, she asked, “Are you my daddy?” I said, “Actually, I am your husband.” She gave me the usual surprised look and said, “And I’m your wife?” She didn’t raise any further questions. I couldn’t help wondering if she had asked the question because she herself was beginning to question whether I was her daddy. I’ll never know.

Driving to and returning from lunch, I played a CD that I bought three or four years ago in Memphis while we were visiting Jesse and her family. It is a compilation of show tunes and old standards that are quite familiar to our generation. I played this several days ago, and she had liked it. She was just as taken with it today. On the way home, she started singing with “Some Enchanted Evening.” Then she wanted me to sing with her. It is an inexpensive CD that has singers who are unidentified. During almost each song, Kate asks me who is singing. Each time I tell her I don’t know and that the company who made it kept the costs down by using unknown musicians. Of course, there is no way she can remember.

On the drive home, she mentioned that she was tired and might take a nap this afternoon. She often says that but forgets soon after we get home. That wasn’t true this time. When she walked into the family room, she headed toward the sofa and asked if she could just rest a while. I told her that would be fine. That was about an hour and fifteen minutes ago. She has been sleeping soundly, not just resting. It makes me wonder about yesterday. I didn’t watch her as closely as I have done today. She might have actually slept then as well. She just opened her eyes and said, “Hey.” Her eyes are closed again. I think I will let her sleep another hour or so if she wants to. She must need it.

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Confused This Morning

A few minutes ago, I went back to the bedroom to wake Kate. She opened her eyes and smiled as I sat down on the bed beside her. I said, “Good morning, I love you.” She said, “I love you too cause you’re my daddy.”