Posted on

Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

Posted on

A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

Posted on

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.

Posted on

Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”

Posted on

Kate’s New Chair

About a month ago, I mentioned Kate’s increasing difficulty getting up from a seated position. I don’t have any control over the seating when we go out, but I did think about what I could do at home. She spends far more time in our family room than any other room in the house except for the bedroom. That led me to think about getting a lift chair.

We went to the La-Z-Boy show room four weeks ago and ordered one. It arrived Saturday afternoon. She tried it out while the delivery men were still here and didn’t get out until time for dinner. That was almost three hours. I demonstrated how it would recline if she wanted to rest, but she preferred to work on her iPad in a seated position. When it came time to leave, I showed her how to raise herself up to a standing position. She was surprised but not overwhelmed by the way it worked. I was the one who was impressed. Much easier than my lifting her.

Yesterday we got a chance to see how it works in the reclined position. She was ready to rest as soon as we returned from lunch. Ordinarily, she would use the sofa. This time I suggested she try the recliner. I adjusted it so that she was practically lying flat. She was comfortable and remained there for three hours. I don’t know that she likes it any more than the sofa, but I believe she is going to enjoy being able to get out of it more easily. Of course, she probably won’t learn how to work the control that has only two buttons – up and down. That shouldn’t be a problem since either the sitter or I will be there to do the job.  I know it will become more useful as her ability to get up becomes more difficult.

It’s easy to look at this as a minor thing, but it represents our moving to a stage when her mobility restricts her more than it does today. I see it as another marker on our journey. In that respect, it is like my discontinuing my morning walk in the neighborhood for one inside the house, bringing in a sitter because I didn’t believe she should be left alone, or getting a handicap placard for the car. It’s another example of the changes we experience. Thankfully, we have adapted to changes in the past. I hope we will do the same as we approach the more challenging ones that lie ahead.

Posted on

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.

Posted on

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.

Posted on

A Few Thoughts on Restrooms and Travel

I am writing this morning in our hotel room in Nashville. We came up yesterday afternoon to visit with our friend, Ellen, who had a stroke four years ago while visiting her daughter who lives here. Ellen has never returned to Knoxville and is now in memory care. She and Kate were best friends at the time of the stroke.

We cut out international travel in 2015. We made what I believe is our last trip to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas last year. But we have continued day trips to Nashville and have recently made them overnight trips. That has been much easier because it is so difficult to get away early in the morning. I consider it a nice treat as well. Sometimes we meet other friends who live in the area on Saturday afternoon. We have a nice dinner and get to bed at a decent hour that night. Then we visit Ellen right after lunch on Sunday afternoon. We usually stay with her an hour or two and get back home in time for dinner.

Each time we make a trip, I reflect on how travel is going and wonder how long we will be able to keep it up. So far, I have been optimistic about continuing. With the changes that Kate is making, I am becoming more doubtful. I’m not sure at all, but I have the impression that other couples in our situation don’t generally continue to travel as long as we have. Travel can be very disorienting and disturbing to the person with dementia. In addition, the logistics place a greater demand on caregivers. It’s enough to get ready for one person. Packing for two is a greater challenge. When one person has dementia, the issues double.

Yesterday we had lunch in Knoxville before leaving. Each of us went to the restroom at the restaurant. As always, I walked Kate to the door of the ladies’ room. I opened the door and looked around to see if anyone else was in there and to identify the stall that Kate should use. I pointed it out to her, but that wasn’t enough. I had to walk her to the stall and direct her to the toilet. Then I stood outside the door in case she might need me. When she didn’t come out in what I thought was a reasonable length of time, I opened the door. She got a look of relief when she saw me. She couldn’t explain to me what had happened. My guess is that she didn’t see the door to exit the restroom and didn’t know where I was. This would not have been the first time this has happened. Usually, however, she calls for me. She might have done that this time, but I probably opened the door earlier than I have done on other occasions. What I do know is that it was a frightening experience for her. It was a little thing and forgotten quickly, but in that moment, she was really scared. It reminds me of being in a house of mirrors when I was a child. I was frightened. It seems to me that Kate, without a memory or the rational ability to deal with the situation, would be even more frightened. It was another reminder of what a security blanket I am to her. She generally doesn’t know what to do in a situation, but she counts on my knowing for her.

The drive to Nashville was an easy one. We relaxed at the hotel about an hour before going to dinner. We had a pleasant dinner and a good night’s sleep.
Kate was up at 5:00 this morning to go to the bathroom. We were back in bed by 5:30, but I don’t think either one of us was asleep again before 6:00 or shortly thereafter. I got up at 7:00, dressed, ordered and ate breakfast in the room, and checked email. I have lunch reservations at noon but hope that I will be able to get Kate up early enough to get there by 11:30. That would allow a more leisurely lunch before our visit with Ellen.

As I think about it, I don’t believe overnight trips like this are any more stressful for Kate than being at home. Yesterday’s incident in the restroom was in Knoxville before the trip. That is an issue that will have increasing implications whether we are home or on the road. I also find that she is confused about where she is when we are in a hotel, but that, too, is something that regularly happens when we are home. If we were to discontinue our trips, it would probably relate to the extra challenges for me. I don’t believe we are there just yet, but we may be getting closer. In the meantime, I am also trying to be more sensitive to how she feels when we travel. If I sense that she experiences anything more discomforting than being at home, that will be a clear indication that it is time to stop.

Posted on

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.

Posted on

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.