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Slept Late Again Yesterday

Yesterday I woke Kate about 11:45. She was sleeping soundly and did not get right up. Our housekeeper was here, and I wanted her to change the sheets in our bedroom. In addition, I had made a 2:00 appointment for Kate to have a massage, so I got her up after twenty minutes or so. I had gotten her clothes out so that she wouldn’t have any trouble finding something to wear. I went to check on her just as she got out of the shower. I showed her the clothes and started to leave. She wanted me to stay. She doesn’t do this a lot, but sometimes she wants me to be around in case she needs help. I know it may not be long until this becomes a new routine.

It was 12:50 before we left for lunch. We went to Panera since it was convenient to our house and the spa where she gets her massages. After her massage, we came back home for about an hour before going to Barnes & Noble. We were there until 5:15 when we went to Bonefish Grill for dinner.

It was an unusual day in that Kate did not ask me to tell her anyone’s name. She was somewhat quieter but seemed to be in good spirits. After dinner, each of our children called which provided a nice boost. Then I got out Kate’s night clothes and put on a DVD of Fiddler on the Roof. She continued to work jigsaw puzzles on her iPad while the movie was playing, but she was listening and enjoying the music. It wasn’t long before she was sleepy. We called it a day.

It is now 9:30. I just looked in on her. She is still sleeping soundly. Since this is a day for the sitter, I would like her to get up before 10:30. That will give her enough time to get ready for the day so that we can have lunch together before the Mary arrives. I will probably wake her if she doesn’t get up on her own. I am hoping she responds more enthusiastically about Mary’s being here than she did on Monday with Anita.

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Increasing Signs of Dependence

Yesterday was a mixture of highs and lows. As I mentioned in my previous post, we were off on a good start. Kate was up early enough for us to get to Panera for her muffin. More importantly, that meant that I didn’t have to rush her to have lunch before the sitter arrived and I left for Rotary.

When Anita arrived, Kate gave me the impression that they would make a trip to Panera while I was gone. When I returned, I found that she had told Anita that she was tired and wanted to rest. She apparently rested most of the time (4 hours). As soon as Anita left, Kate told me that she had missed me and was glad I was home. She had been resting on the sofa in the family room but got up and was ready to go.

I asked if she would like to go to Barnes & Noble. She said, “Anywhere. I just want to get out of the house.” This is further evidence of what I have mentioned before. She doesn’t like to stay at home (or anywhere else) for more than an hour or two. When she doesn’t go to Panera while I am gone, she gets bored. Anita said she had encouraged her to go to Panera, but Kate said she was tired and wanted to rest.

This is not the first time this has happened, but it is not a frequent occurrence. It has made me wonder if she is beginning to be self-conscious about being with a sitter when she is at Panera. I have also noted what I thought might be signs that she is less comfortable with Anita than with Mary. One other possibility that crosses my mind is that she is just becoming so dependent on me that she feels less comfortable with the sitters than in the past.

When we got in the car to go to Barnes & Noble, she asked me where she could put her cup. This was another first. She has never been unclear about where the cup holders are in the car.

We were at Barnes & Noble for about an hour and a half before leaving for dinner. As we left, she said how nice it was that there is a place like Barnes & Noble where you can spend a little time relaxing. For a long time, I have sensed that she feels at ease at both Panera and Barnes & Noble. This was the first time I had heard her express her feelings about it.

At dinner, we talked about our family and our marriage (her favorite topic). During this time, she asked about the names of our children and grandchildren. Then she surprised me by asking, “What is the plan?” I wasn’t sure what she meant and asked if she meant for “tonight” or “tomorrow?” She said, “Whenever. I’m just going to do whatever you say.” After thinking about it, I believe she was saying saying it was too much for her to plan anything. I told her I thought we would go home and relax a while in the family room and then go to the bedroom where I would play the last portion of Les Miserables. She liked that.

At 8:00, I told her I was going to take a shower and that when I got out we could watch Les Miserables. I had been playing an audio version of the musical and left it playing when I went to shower. As I left the family room, I noticed that she had put down her iPad. She had closed her eyes and was listening to the music. She commented on how beautiful it was. When I got out of the shower, I found that she was still sitting in a chair listening to the music with her eyes closed. A few minutes later, we went to the bedroom and watched the remaining portion of the DVD. Once again, she loved it.

Then she started getting ready for bed. She went to her room to get her night clothes. When she returned, she said, “You know I could not live without you.” She said this is a way that really meant it, not that she was simply expressing how much she likes me. It is clear to me that she recognizes that she couldn’t live without my help. She told me she doesn’t want to be anyplace without me.

I am tying this back to her reaction to the sitter. I think she has become so dependent that she feels less secure when I’m not around. When I think of how much she is not able to do, I can understand her insecurity. I am glad to be here for her but sad to see her arriving at this place.

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Yesterday was a nice day.

I hope my previous report didn’t make you think our days are no longer filled with good things to report. I think we’ll always experience good things. I am sure they will be different, but we’ll have them. In the meantime, we still derive a good bit of pleasure out of each day.

Kate was slow getting up again yesterday. We skipped Panera for the second day in a row and went directly to lunch. For about the third or fourth time in a row, we had dessert. I see a habit developing. Our server is now automatically telling us what they have and any special desserts for the day. There was a time that we rarely had a dessert after a meal. Now we have dessert at five of the restaurants we visit weekly.

Yesterday afternoon we went to our oldest community theater where they were performing Beauty and the Beast. Each summer they do a play or musical primarily for children. When our grandchildren used to visit, we would take them. Now we go by ourselves. Kate loved it.

From there we went straight to dinner at a Thai restaurant that is becoming our favorite Sunday night place. I ordered a dish that we have had before. This time I selected shrimp instead of chicken. Kate couldn’t stop talking about how good the sauce was. She loves rice, and I had saturated it with the sauce. I make a point of this because she rarely comments much about the meals we have except for the desserts. Her taste buds are still working.

Saturday night, we watched the first half of the 25th Anniversary concert of Les Miserables. Last night, we watched the second half. Kate was as taken with it as she was the first time she saw it. This was the fourth time we have seen it in four weeks.

We’re off to a good start this morning. Kate was up early enough for us to get to Panera right after 10:00. She is in a cheerful mood. Sometimes she likes to tease me. She is sitting across the table from me right now. A minute ago, she said, “If you just didn’t wear glasses, you’d be perfect.” I like that better than when she says, “You’re a nice guy, but you’re not handsome.”

As I was writing that last sentence, she said, “What is your name?” I told her. Within seconds, she said, “What’s the first name again?” Then she asked a third time. I told her, smiled, and said, “I love you.” She said, “I love you too.”

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The changes are gradual, but noticeable.

Yesterday I checked on Kate at 10:30. She had gotten up but had not yet showered or dressed. Not long ago, we would have been at Panera. It was after 11:30 before she was ready to leave, so we went straight to lunch. This has occurred with increasing frequency over the past few weeks. A number of people at Panera have asked where we’ve been. I’ve told them we’re sleeping a little later lately.

It was late April or the first of May that her sleeping pattern began to change. At that time, I wondered if this could be a sign of some overall change that was taking place. I also considered the fact that she was taking Trazadone. It is often given as an aid to sleep. After consultation with her doctor, I took her off of it. On the whole, I believe that helped a little. I do believe she is sleeping fewer hours each day. Before taking her off, she usually slept 12 to 14 hours. Since then, the time she wakes up has been more erratic. I would say that she sleeps 11 to 13 hours but occasionally as long as 15 hours. For a long time, I haven’t made any commitments before noon. Now I feel more comfortable if we don’t have any before 1:30. For example, her doctor works out of two offices. One is a good bit closer to us. I have changed her appointments to the farther distance so that she can get a 2:00 appointment.

There are also some days when she sleeps late and then naps again in the afternoon. That happened recently on a day when we had a sitter. She had slept until almost noon. The sitter said she slept another two hours while I was gone. When we returned from lunch yesterday, she went directly to bed and rested almost two hours.

I have been especially sensitive to her sleep routine because I lost a friend who had dementia last year. He was progressing about the same as Kate. After we last saw him, he started sleeping more and died a few weeks later. That may be an unusual occurrence, but I took notice of it.

Kate’s changes are more than just her sleep. As I have reported in other posts, she often picks up items of clothing to take with her when we go out. They are never things that she might need. In most cases, she hasn’t said anything to me about why she is taking them. I don’t ask. I learned a long time ago that she can’t explain why she does things. As we were getting ready to leave for lunch, she said, “I have an extra pair of socks (in her hand). Should I take them?” I said, “I don’t think you’ll need them. Why don’t you leave them here.” Sometime in the past week or ten days, she asked the same thing about some other item. I gave her the same response that time. Otherwise, I just let her bring whatever she has to the car. Normally that is where it stays until I bring it back in.

She has a particular attraction to socks. She often gets out two to four pair of socks to wear even if she doesn’t take them with her. I find them in various places around the house. She has also been exploring closets and drawers that she doesn’t normal check. This morning she got into a closet where she keeps her dressy attire. I keep several tops in there so that she has something appropriate when we are going to a special event. She picked out a very attractive top I had bought a couple of months ago. I didn’t say anything. She looked great, and it’s a top that is multi-colored and won’t show stains. While she was sleeping, I noticed that the bottom drawer of my bedside table was open. Then I saw that she had taken out a small cassette recorder and a charging cable and left it on the bed.

More significant is her change in dependence on me. She is asking for and accepting my help more frequently. It wasn’t long ago that she was regularly declining my hand when going up or down stairs or curbs. Now she often accepts and frequently asks. Its kind of cute the way she asks. As I step off a curb, she’ll simply say, “Hand.” She doesn’t say it sternly. It is a gentle request for my help. She does something similar when dressing. It’s almost like a little chirp. She says, “Help.”

I have been well aware that people with dementia need help dressing, but I never really thought about it much or understood what the problem was. Now I am learning. Getting pants and tops on so that they aren’t backwards or inside out is more challenging than I realized. There is also the problem of the sequence or order in which you get dressed. On occasion when I observe her dressing, I am struck by how much concentration is required for her to figure out what she should do next. Sometimes she just has to call, “Help.” The interesting thing is that this has occurred so gradually that she doesn’t seem to express any frustration or irritation that she has to ask for my help. She is very comfortable asking. She doesn’t do it all the time. She is still picking out her own clothes most of the time.

Of course, one of the most noticeable changes are in her memory. The fact that she asks my name more often is among them. When taken together, all of these things make it clear that our lives are becoming very different. Change brings with it a lot of feelings. At Broadway Night at Casa Bella on Thursday, they sang a song I had never heard, “Happy/Sad.” That seems to be where I am right now. I’m happy for all the good times we have had and will continue to have, but I’m also sad as I contemplate the changes taking place.

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Another Episode of Anxiety

We had a very nice evening last night. After dinner, Kate spent an hour or more looking through two of her photobooks. As in the past, it was just like seeing them for the first time. We followed that by watching the third of three DVDs of her family’s home movies and videos. This video had just as much impact as the first two. After that, she dressed for bed and then went to the bathroom. When she returned, I noticed that she seemed to be breathing heavily. Then she began to make audible sounds as she breathed. It was like, “Oh . . . Oh . . . Oh.”

We got into bed, and she said tearfully, “I’m sorry I didn’t get everything done.” I said with a soft, comforting voice, “That’s all right. You didn’t forget anything. There wasn’t anything for you to do.” She didn’t calm down immediately. I asked if she could take some slow, deep breaths and relax. That is something she does when she has an attack of acid reflux. I held her for a few minutes and began to talk about her family that we had just seen on the DVDs. That led to talking about our marriage and the good times we have had. In a short time, she relaxed.

I wish I knew what brings on these attacks. This is the third one in the past two or three weeks. Each time it seems to occur without my being able to connect it with anything specific. The fact that she apologized for not doing something suggests she imagined my asking her to do something that she didn’t do. I think I’ve mentioned before that she really wants to please me. That has caused me to try not to say anything when she forgets to get ready to go somewhere or wear clothes I have picked out for her. It makes her feel bad.

Each time something like this happens, I wonder what the future holds. That is truer now than a few months ago.

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Living in the Moment

People often talk about the importance of mindfulness and living in the moment.  That is something that has taken on greater meaning for me since Kate’s diagnosis. I believe we’ve done a good job of that. More recently, as Kate’s memory has declined, living in the moment has come to be more literal for her. For that reason, I find myself trying even harder to make those moments as pleasurable for her as I can.

I have a plan in mind for each day. I try to avoid rushing her, but I do select a variety of things for us to do every day. A good example would be our morning trip to Panera. I know it’s something she likes to do, but I don’t wake her up. At least twice last week, she slept until almost noon. In those cases, we went directly to lunch. There are occasions when I do wake her. That happens on a few occasions when I have made lunch plans for us.

Yesterday was one of those. My brother Larry and his wife, Margaret, were passing through Knoxville. We were supposed to meet them at Casa Bella for lunch at 12:30. Knowing that it can take up to an hour and a half for her to get ready, I started gently waking her around 10:00. She seemed quite tired, so I let her sleep a little longer. She finally got up just after 10:30. I had all her clothes out for her. That enabled her to get ready without rushing.

At 11:30, I got a call from my brother. They were making better time than anticipated and were to arrive at the restaurant a couple of minutes after noon. At that point, Kate was still not dressed. I decided it might be better if we ate at a place closer to our house. That kept me from rushing Kate. The alternative plan worked perfectly. We were walking from our car to the restaurant as they drove up. We had a pleasant visit with Larry and Margaret, and they were on their way less than two hours later. That gave us the opportunity to come back to the house for an hour before getting our hair cut.

After our haircuts, we had another hour before we needed to leave for Broadway Night at Casa Bella. It was another good evening of music, food, and fellowship. We were home by 9:00. This is the only evening activity I schedule these days. All three of the local theaters have matinees on Sunday. We always attend those. This is the way I manage to keep us active but not racing from one thing to the next. It seems to be working.

I wonder if my management of this schedule qualifies as mindfulness on my part? I am clearly trying to be mindful of Kate’s needs, but I often discover I overlook other things that I should have done. I may have to meditate on this.

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Kate’s Brother Ken and His Diagnosis

In previous posts, I have commented on the fact that Kate’s brother Ken is also living with Alzheimer’s. Like their individual personalities, their approaches following diagnosis have been different. Ken has been more public and more active in learning about the disease as well as taking steps to maintain his abilities as long as possible. Kate has accepted the diagnosis and chosen to be private and to live as though she doesn’t have the disease.

Ken and I stay in touch by phone and email. Here are several excerpts from our recent communications.

RICHARD: Ken, a few weeks ago, I wrote a post in which I compared the different ways which you and Kate have approached your Alzheimer’s diagnoses. As you and I have discussed, I thought it might be informative to the readers of this blog if we learned a little bit more about your own experience. Today, I’d like to know how you came to seek a diagnosis in the first place. Could you tell us a little about that?

KEN: I’d be happy to, Richard. My wife, Virginia, encouraged me to see the neurologist. I was having trouble with transposing numbers, remembering dates and appointment times. I had previously given up tax preparation and other accounting responsibilities, primarily because Virginia did them much better than I did.  I spent my time on the construction of family photo albums, which allowed me to work at my own pace without deadlines.  I was aware of the greater time it took to complete albums, and the fact that I relied heavily on Virginia to make the final corrections.  I have never really been a “detail person”, so it was easy for me to assume my issues were just a normal part of the “aging process”.  

RICHARD: Were you surprised when you got the diagnosis?

KEN: Not really.  In some ways, I felt relieved in the sense that it explained my decreasing abilities.  Being aware of the deterioration part of the disease forced me to appreciate the present, reflect, and prepare for the future.  Fortunately, I am an introvert, so this comes somewhat naturally to me.  Four years later, I continue to monitor my progression with the disease.  Even with the steady decline in short-term memory and ever-slowing processing speed of information, Virginia and I have made the necessary accommodations so that we both can lead happy lives.  

RICHARD: Did you have any dramatic experiences that made you think you might have a problem, or was it just a lot of little things? For example, did you ever get lost while driving in what should have been familiar territory?

KEN: No, nothing comes to mind. Thankfully, I am still driving. So far, I haven’t gotten lost. I will say, however, that Virginia does all of the driving when we are together. Most of the time when I am driving I go to places that are near to home. That makes it less likely for me to have a problem.

RICHARD: That’s good, Ken. I recall any number of occasions in which Kate called me from the car asking for her help getting places she had originally had no trouble finding. One of the most dramatic was when Kevin and his family flew into Knoxville. We needed two cars to accommodate all of us and their luggage. I went ahead to the airport. Kate wasn’t quite ready and was to meet us there. In a little while, I got a call from her. She was in downtown Knoxville, not much closer to the airport than she would have been from our house. I told her to stay there. Kevin’s whole family crammed into my car, and we drove to where she was.

That was before I had told the children about Kate’s diagnosis. I knew that must have been a clear sign to Kevin that she had dementia. After I told the children, Kevin told me that he thought it strange that she would have gotten so lost, but he didn’t really think she might have dementia.

RICHARD: I was interested in hearing you say that you monitor your progress. Could you tell me a little more about that? Do you keep any periodic records on how you are doing?

KEN: For the most part, my judgment of my progress is just impressionistic. The only thing for which I have kept records is with Lumosity. For example, after my first year, I had to back down on the playing levels of some of the games, primarily games requiring spatial recognitions and orientation.  They also have a feature that gives me a percentile ranking of my performance. That is something I follow. I also added Sudoku to my daily schedule. I did well on the “very easy games”, but struggle with some of the “easy” ones.  By March 2018 I had noticed a small, but noticeable decrease in my Lumosity scores, particularly in the games requiring speed and visual-spatial processing.   I also recognized increasing difficulties in keeping my calendar and computer files organized correctly and up to date.  

RICHARD: I there anything else you would like to say about getting the diagnosis.

KEN: Surprisingly, there are even some hidden blessings.  The early diagnosis forced Virginia and me to specifically prepare for the future.  We have completed all the legalities that go along with death so that there will be no question of our desires on my passing, which gives me a great sense of comfort.  We are much more attentive to the time (and quality of time) spent with our family, extended families, and friends, who all know of my diagnosis.  I am also fortunate to have a local “Memory Connections” support group that meets every Friday for 5 hours at a Presbyterian church.

RICHARD: Thanks, Ken. It seems like the primary signs of your having problem involved effectively completing tasks rather than just a memory issue. Those are the kinds of signs that I observed with Kate. Before I learned more about Alzheimer’s, I was like most people. I thought the only problem was a memory issue like remembering people’s names or appointments. Those are the things that bothered Kate, and she was quite frustrated.

It also sounds like you have worked out a way to maintain a stimulating life. I am particularly interested in your support group. Perhaps, we can talk more about that next time.

KEN: I’ll look forward to it. Take care.

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An Example That What Works for One Person May Not for Another

On Monday I had gone to Rotary and to the Y while the sitter stayed with Kate. I had a little time after that and dropped by Whole Foods to connect with their Wi-Fi. While I was there, I saw a friend of Kate’s. I learned that she had recently moved in with her parents to help her mother take care of her father who has Alzheimer’s. It sounded like her father was getting along about as well as Kate. I mentioned our having binged on musical and theatrical performances as well as keeping active by spending time at Panera, Barnes & Noble, and eating out for our meals.

Kate’s friend is a former art teacher in the public schools. That led me to tell her about Judy Cornish’s thoughts about rational and intuitive abilities. I thought that with her artistic background she might be interested in Cornish’s distinction and its implications for caring for someone with dementia. She was interested and then told me her father was a retired band director. Music had been an important part of his life since childhood.

We swapped stories for a while. Then I mentioned our going to Casa Bella three times a month for their music nights. She felt her parents would enjoy the music, but she had concerns about their getting out so much. My impression was that they were not as comfortable getting out in crowds. They prefer to remain at home a good bit of the time. I realized quickly that what has worked for us was not going to be applicable to them.

I may have been sensitized to their situation because of a couple of tweets I saw in the past few days. One had said something about the importance of recognizing that we are not all alike. The other mentioned how uncomfortable some people could be when thrust into many public situations. They eat out infrequently and prefer to enjoy the comforts of home.

As we talked further, it appeared that the friend’s parents were getting along fine without getting out the same way that Kate and I have done. She said her father plays music all the time as he has always done.

I noticed one other similarity and difference from what I have chosen to do. Her mother and I share a common feeling that we don’t like leaving our spouses to the care of someone else. The difference is that I have engaged sitters to be with Kate three afternoons a week. This is a case where my head (rational ability) overrules my heart (intuitive ability). After our experience with our parents and the reading I have done on caregiving, I believe it is best for Kate if I give myself breaks. My plan for the future is to increase that care as her needs change.

Ultimately, I hope that will enable me to keep Kate at home. Time will tell if that is possible. I don’t feel I should commit myself at this time. Since Kate’s diagnosis, I have tried to be sensitive to the changes that are taking place and adjust our activities accordingly. I gave up international travel in 2015. We are now approaching the end of air travel domestically and sticking with day trips or overnight trips to destinations that are not too far from home. I am approaching the rest of our journey with an open mind with respect to what is best for the future. Right now, I believe it is best for me to keep her with me. That could change if I had any significant health issue. I am going to be optimistic.

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Kate’s father’s home movies were a hit again last night.

We had an early dinner last night. That worked out well because it gave us a little extra time before going to bed. We took part of that time to relax in the family room. After an hour, we decided to watch another DVD of her father’s home movies. The portion we watched last night was taken in the mid-to-late 1930s. Although that was before Kate’s birth in 1941, she had known almost all of the people. She was especially excited to see moving pictures of her mother and father. She also enjoyed seeing her grandmother who hosted a big family lunch on Sunday. She had eight children, most whom we married with children at this time, so there was always quite a crowd. We counted over fifteen who are no longer with us. Afterward they adjourned outside to relax and watch the children play. It was fun to see the people she has known as adults playing as children. It was another special way to close the day.

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More Trouble With My Name

Kate still remembers my name, but the tie between my name and me is getting noticeable weaker. We are spending a little more time at home today since we have a crew of workers installing new windows in the house. A few minutes ago as we were sitting across from each other in the family room, she said, “What is your name?” I gave her my first name. Then she asked for my full name. After I had done that, she asked me to repeat it again. She tried to repeat it and then stopped. She asked me to repeat it. Then she repeated it back to me. To me that is another sign that she is working hard to hold on to all the memories that are slowly fading away. I am so glad she doesn’t seem to be disturbed at all. That would bother me more than the sadness of watching her slip away from me.