Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.

We’re Always Learning and Adapting.

LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it.  (Written by a person with dementia)

After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.

As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.

More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.

The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.

Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.

All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”

I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed

So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.

As I have noted before, we are always learning and adapting. There will be more of that in our future.

Cards, Anyone?

At 4:00 this morning, I got out of bed for a bathroom break. As sometimes happens, I didn’t go back to sleep immediately. Shortly after 5:00, we had the following conversation.

Kate: “Hey. <pause> Hey, where are the tards?”
Richard: “The what?”
Kate: “The tards.”
Richard: I took a guess. “The cards?”
Kate: “Yes.”
Richard: “They’re in the living room.”
Kate: “Well, get them.”

I went to the living room, located them in a drawer of the secretary and brought them back to bed. I handed them to her. In the dimness of the nightlight from the bathroom, she amazed me by easily opening the box and removing the deck of cards. Then she took the top card, placed it on the bed between us and said, “Your turn.” I said, “I don’t have any cards.” She took about half the deck of cards and handed them to me. I placed a card on top of hers. Then she said, “Something’s wrong.” She didn’t say or do anything else. She had closed her eyes. I said, “Well, I think it’s time to go back to sleep.” She was already gone. Our conversation and our card game were over.

Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

Emotions on High Alert

I have often said that Kate responds with much greater sensitivity to noises, especially sudden ones, hot or cold temperatures, and music. That has increased significantly in recent months and now reached a point when I have to be more careful with what I do or say. She can be easily disturbed.

Of course, there are many things that are completely beyond my control. Yesterday, our server at lunch came to our table to fill our glasses with water. Kate said, “Oh, is that for me?” The server, who is one of our regulars, teased her and said, “This is for him.” Kate was crushed, and tears filled her eyes. I jumped right in and told her the server was teasing her. It took her a moment, but she recovered without any problem.

After we had ordered, Kate asked what she was having. I said, “The trout.” She said, “What is that?” I said, “It is a fish.” The moment I said, “fish,” she looked disturbed and tried to say she was bothered by the idea of eating an animal. (She just couldn’t put the words together.) This is something that has started recently. We have had these conversations before, and she is usually able to talk about it without any emotion. With that in mind, I said that it does bother us when we think about the animals we kill for food, but I was glad that we don’t eat dogs or horses the way they do in some places. I should have known that was the wrong thing to say. She responded with tears and required a little comforting on my part to calm her.

We were seated at a table across from the bar, and a little later, the bar tender tossed something into an aluminum tub. It wasn’t a really loud crash, but it was audible throughout the seating area. Kate gasped very loudly. The bar tender apologized. There were three women seated at the table just two feet away from us. I am sure they were far more startled by Kate’s reaction than to the noise that caused it. Then Kate called to the one man who was seated at the bar. When she got his attention, she apologized profusely to him. It reminded me of the way she apologizes to me after she says something to me that she thinks is out of line.

I have also mentioned her being frightened when she doesn’t know where I am. She is particularly sensitive about that now. Even at home she can be frightened when I am in another room.

Last night, we went to Casa Bella for opera night. The program was dedicated to a 95-year-old man who died suddenly last week. Kate and I had sat with him and his wife for the past six years. The emcee had only said a few words before Kate was whimpering, and she didn’t even remember that the man being honored was the man with whom we always sit. This response is becoming typical anytime she hears about someone’s dying.

Kate has always been tender-hearted, and now her emotional responses to many things are going well beyond what I have observed before. Like other aspects of her behavior, this has not presented a problem so far. I hope it will remain that way.

Relaxed and Happy, But Confused

After Kate’s insecurity yesterday morning, I wondered what the rest of the day would be like. I’m happy to say that it was a very relaxing and peaceful day. I didn’t get her up until almost 11:15. Like the day before, she got up and dressed rather quickly. She was in a good mood and didn’t show any signs of confusion except for not knowing where the bathroom is located.

As we walked along the sidewalk outside the restaurant where we ate lunch, we passed a group of women who were having lunch after their weekly game of tennis. We see the almost every week and don’t know their names, but we always speak briefly when we are either going in or leaving. Kate was especially friendly. I don’t recall what Kate said, but it was something that I suspect made them wonder a little about her. I thought about giving them one of my Alzheimer’s cards but didn’t. I may do that another time.

When our server brought our drinks, Kate gave her a nice greeting and asked her name. She has done this the past couple of times she has served us. She not only asked but tried to repeat it but mispronounced it. The she asked the server to spell it. I informed the server about Kate’s diagnosis long ago or she might have wondered about her. As it was, I think she felt the way I did and appreciated the fact that Kate was interested in trying to learn her name.

We spent a quiet afternoon in our family room at home. Kate wanted to rest as soon as we walked in. Unlike most days, she went to sleep. I’m not sure how long, but she must have slept at least an hour. I sat across from her looking through a couple of catalogs and checking email. Periodically, I was out of the room briefly while I tended to washing clothes and watering plants.

Kate woke up and started looking at the back yard. From her position on the sofa she can see the tall trees behind our house. As usual, she remarked on how beautiful they are. In most ways, she was very relaxed and seemed perfectly normal. Then she pointed to the back yard and said, “I used to walk all around this place when I was a child.”

As I have noted many times before, she also busied herself by pulling strands of her hair starting at the scalp and moving to the ends when the hair falls from her fingers. She has acquired what I see as a more problematic habit recently. She deliberately puts saliva on her fingers and wipes it on her forehead and, sometimes, her arms. She takes both of these habits very seriously and often wants my attention to watch what she is doing. She believes both of these habits do something good. I’ve never understood what.

Later as I was coming inside after watering plants, she looked at me and said, “You and I went to school together.” I said, “Yes, we did. Do you know the name of the school?” She said, “Let me think.” When she couldn’t guess, I said, “TCU.” She said, “That’s right.” As far as I could tell this was the first time during the day that it was obvious she didn’t remember who I was. Of course, she slips in and out between knowing and not knowing very quickly. She can mention her mother’s name in one moment and ask her name in the next.

She had brief scare late in the afternoon when she came out of our bathroom. I had left momentarily to take a few things to the washer. I heard her say, “Hey” a couple of times before I got to her. She was greatly relieved to see me. Since she has become so dependent on me to tell her what to do or where to go, she is often afraid when she doesn’t know where I am.

It was also a day when, most of the time, she didn’t recognize that she was in our house. That happens regularly in the morning and did yesterday. Throughout the day and into the evening, she said things that indicated she thought she was some place other than home. Interestingly, sometimes she wanted to “get out of here.” Other times she commented on what a nice place it was. As we left for lunch, she said, “I feel really sad leaving here.” I told her we would be coming back after lunch. She felt better. Later as we left for dinner, we had a rerun of the same experience.

All in all, it was a nice day despite her confusion. My own assessment of how things are going continues to depend on how she responds to that confusion. I am able to accept the decline in her memory and the confusion she experiences so long as she is happy. Much of the reading I have done on the topic of caregiving emphasizes the importance of accepting the person for whom you care as she is and focusing on making life as fulfilling as it can be. That makes life better for everyone. I believe it.

Feelings of Insecurity and Appreciation

Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.

It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.

When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”

After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.

Today is starting the same way.  While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.

When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.

After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.

It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.

Our Strangest Day

It began with yesterday’s “Surprising Conversation.” The rest of the day was filled with strange incidents. I’m sure I would have noticed more if I had been home during the afternoon instead of the sitter.

The first thing I noticed happened as we were walking in the door at Applebee’s for lunch. Kate said she wasn’t sure she would be able to eat anything. That remark and the expression of concern on her face made me think that she might be sick. She walked very hesitantly into the restaurant and took an unusual amount of time to walk up the two steps to the booths where we always sit. She seemed very confused. I asked her if she felt all right. She told me she didn’t feel “all right,” but she wasn’t sick.

She could never explain the problem very well, but it turned out that she thought two people that she and I know were out to get her. When the hostess put the flatware wrapped in a napkin on the table, I unfolded the napkin, placed the knife and fork at her place, and handed the napkin to her. She refused to take it. It seemed she thought “they” had contaminated it in some way. Later when the food arrived, she picked through everything and put some of them on the table beside her. She shredded some of the chicken and said, “See that. They got this too.” She put it on the table as well. It took her a long time to finish her meal, and she didn’t eat all of it. That is unusual, especially recently. I suppose it was her belief about contamination.

Before the sitter arrived, Kate went to the bathroom. Since that is the bathroom that the sitter usually uses, I checked to see if any clean-up was required. I discovered that she had taken one of three artificial tulips out of an arrangement on the counter, torn off the leaves and all the petals of the flower itself. She left them in the sink where it appeared she had washed them.

When Mary arrived, Kate was picking up two ceramic containers that used to have small cacti in them. She filled them with water and started looking for a place to put them. She and Mary had gone outside to find a place as I was preparing to leave. I left, so I don’t know what happened after that. When I got home, I found them in the laundry room sink.

After Mary left, I sat down on the sofa beside Kate. She said, “Is my mother still upstairs?” (We have a single-story house.) I told her that her mother wasn’t here. She said, “Well, where is he?” I said, “Who do you mean?” She said, “You know.” I never figured out who “he” was.

We went to dinner at our regular pizza place. While we waited for the pizza, she  diligently tried to tear her paper napkin into multiple sections. She carefully attempted to make each tear a straight line. As you can imagine, doing that with a paper napkin is almost an impossibility, but she gave it her best effort.

As for eating her pizza, she ate almost every bite of it. I know that doesn’t seem strange, but she has never liked pizza crust or crust on any bread. (She also has a distaste for the peel of fruit like apples, grapes, or tomatoes.) All our servers know that when she eats bread, she eats from the center out to the crust. Recently, I have noticed that she has been eating much closer to the pizza crust. Last night, however, she ate everything. She only left specks on her plate.

As we were preparing for bed, she started looking through the drawers in her bedside table. She also picked up a coaster on top and asked what it was. I explained it to her, but she didn’t understand. When I got out of the shower she had 8-10 things from the drawer spread out on the bed. She was trying to figure out how to use them with the coaster. She wanted me to look to see if she was doing it the right way.

Before calling it a day, she said something about having a big day “tomorrow” and would be leaving early for church. A few minutes later, she asked me what time she should leave. I told her 10:30 would be fine. She said that was later than she wanted and would probably leave by 9:30. I feel sure she was living in a “flashback” to the years she was our church librarian. She gave that up in 2009 because she was beginning to have trouble doing the work the way she knew it should be done. That was a year and a half before her diagnosis.

What I have reported above is just what comes to mind as I write this post. She made other comments throughout the day that indicated she was experiencing delusions or hallucinations. Like so many things, I don’t know how to explain what she was experiencing. I do know that these symptoms are not unusual for people with dementia. For that reason, I don’t feel any sense of alarm. She has had periodic experiences for several years, but this was the first time so many different things have occurred over the course of a one day. I take it as a further sign of her overall decline.

What is in store for today? I am eager to see.

Kate’s iPad

Since giving up her computer and then her yardwork, Kate has been dependent on her iPad for all of her self-initiated entertainment. The past several years she has spent as much as eight hours a day working jigsaw puzzles on it. The past few days she has spent very little time with it. The last three nights when I checked the battery level, it was at 88% of capacity or greater. That is the best measure of how little it was used this week.

Some of that relates to her sleeping and resting. Until a year ago, we went to Panera almost every morning. We usually stayed more than an hour and sometimes two hours during which she worked steadily on her puzzles. Now it is unusual for her to get up before 10:30 or 11:00, and we go straight to lunch.

Similarly, she used to use her iPad at home after lunch and often at Barnes & Noble. We haven’t been there in several months. She usually rests after lunch, sometimes as long as two and a half hours. Thus, the sleeping/resting explains why she is using the iPad so much less than in the past, but that isn’t all. She also finds it much more difficult to work her puzzles. She asks for my help significantly more, but she also has more trouble understanding what I tell her. My instructions mean nothing. She is generally more persistent in trying to complete her puzzles, but, increasingly, she just quits or asks me to complete them.

I know she will have to give up the iPad sometime in the future. I just hope she can hold on a while longer. I’m not counting on it, but, perhaps, her photo books and the coloring book may fill in the gap.

A Good Day But a Lot of Confusion

It’s hard to summarize in a heading what yesterday was like. Bare with me as I try to explain.

The day began differently than others over the past few weeks. She has been getting up rather easily when I woke her sometime between 10:30 and 11:00. There have been three or four days when I didn’t have to wake her at all. She waked up on her own at earlier times. In fact, it was earlier enough that we made it to Panera three or four times over the past week or ten days.

Yesterday was different. I was about to get up at 5:50 when she wanted to go to the bathroom. She didn’t display any of the confusion she has on some occasions, but she sounded relieved when she said, “I am glad you are here.” She repeated that a couple of times on the way back to bed. I quickly decided it was best if I got back in bed with her. It was the right thing to do. She was feeling insecure over not knowing who she was, who I was, or where she was. I stayed with her until 6:50. Then I got up to prepare for the day. She was still awake when I left the bedroom. I told her I would be in the kitchen. She was completely comfortable with that.

Before I ate breakfast, she started to get out of bed. I went to the bedroom and found that she wanted to get dressed. It was still early, and I asked if she would like to take a shower. She did. When she was finished, she went back to bed. The fact that she had gotten up and taken a shower so early led me to believe I would have no trouble getting her up for lunch. I was wrong.

We have not been to church in almost a year and had planned to take Kevin with us. To insure that we would be on time for the 11:15 service, I went in to wake her at 10:00. She didn’t want to get up. I decided not to push her. I went back around 10:20. She was firm in her intention to remain in bed. Kevin and I changed our plans for church. I made a noon reservation at Bonefish Grill. Finally, I went back to wake her at 11:00. She still didn’t want to get up, but she gave in with a little encouragement. She wasn’t happy about it, but her mood quickly changed when she saw Kevin as well as the flowers and pictures in the family room.

She surprised me at lunch when she expressed displeasure that I didn’t order a salad for her. I never order a salad for her because she doesn’t enjoy salads. She has never complained before. I offered to get her one or to share mine, but she didn’t want anything but two of my olives.

I wasn’t surprised that she wanted to rest when we got home, but, as usual, she got up rather easily when it was time for us to leave for a live performance of Hello Dolly at one of our local theaters. She did surprise me, however, during the intermission when she struck up a conversation with a man in the lobby. He was standing by the three of us and told us he had first been to this theater when he was a child. Kate asked him what he did. He told her he was a retired radiologist. Kate said, “What’s that?” He began to explain by giving her a tidbit of history including the early experiments of William Roentgen. Kate expressed interest and complimented him about the contributions that he (the man she was talking with, not Roentgen) had made. He tried to play down his own work, but she insisted she accept her compliment. I found it a most interesting conversation. Except for not knowing anything about radiology and x-rays, she seemed quite normal. She was a very active participant in a conversation with a total stranger.

After leaving the theater, we stopped by a pizza place that had been a favorite of our children’s when Kevin would have been as young as two or three. We finished the meal by sharing a piece of cheesecake. Kevin and I didn’t waste any time sampling it. Kate apparently didn’t notice it was sitting in front of us. I put some cheesecake on her fork and placed it on her plate. She still didn’t eat it or acknowledge that it was there. I pointed it out, but she couldn’t understand what I was trying to tell her. She put her plate aside and pulled the plate with the cheesecake toward her. I explained that I had already cut a piece for her. Again, I showed her the fork with the cheesecake on it. She was still confused. After several tries, she finally understood.

When we got home, she asked what she could do. I handed her the iPad and suggested she work on it. She said, “What’s this?” That was not an unusual response. She almost always takes interest in her iPad, but she often doesn’t know what it is. When I mention that she can work puzzles on it, she understands. That is what happened last night. On occasion, she is confused as to what she should do after the puzzle pieces are scattered. Last night was one of those times. I explained, and she went to work. She had a very difficult time. I don’t recall her every having more trouble before. In my effort to help, I may have exacerbated the situation. I was trying to be patient, but I realized the tone of my voice was stronger than usual as I pointed to specific pieces and then to places where they should go. That probably frustrated her even more. I decided it was best if she dropped the puzzles for the night.

Then she picked up a word puzzle book on the table beside her. I noticed that she was holding it upside down. She seemed confused. I turned it right side up. Then she put it aside and picked up the coloring book I had bought her months ago. She has never shown any interest, but I have kept it on the table beside her chair in the family room since then. Once in a while, she picks it up and looks at it. I picked out a crayon and gave it to her. She wasn’t sure what to do with it. I gave her what was an insufficient explanation. Then I decided it was better to demonstrate. I colored a small teardrop object on the page and gave her the crayon. From there she took over and colored for the next twenty minutes or so before it was time to get ready for bed. I was pleased that she was interested and hopeful that she may try it again. That could be a good replacement for the iPad as she loses her ability to work her puzzles. I was also discouraged when I watched her color. She didn’t appear to know what to do. What she colored looked like something that a young child might have done. The most important thing, however, was that she found something she liked.

There are two things I can say about yesterday. First, it was not a good day in terms of Kate’s Alzheimer’s. I don’t remember a day when she has been as confused for as long a period of time. Second, all-in-all it was an enjoyable day. She especially enjoyed the musical. The day was another good example of how mixed our days can be and that the Happy Moments still outweigh the sad ones.