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Alzheimer’s Has Been Testing Me For The Past Two Days: Part 1

Preface

I wrote most of this post yesterday (Saturday). That was 24 hours after I started. My intention was to write a brief summary of a special time Kate and I had Friday morning. I dropped those plans when other things took precedence. Although the morning had gone very well, the day turned out to be most unusual and very challenging. Even more unusual, was that it marked two days in a row that Kate faced problems that were especially difficult for me to address. A lot has happened. I won’t do justice to what occurred, but here’s the story in two parts, starting with Thursday.

Kate got up early on Wednesday and didn’t rest as much as usual during the day. Thus, it was no surprise that I needed to wake her on Thursday. At 11:00, I played music to wake her up gradually. After 30 minutes, I went in to see if she was awake. She wasn’t. That is unusual. Normally, she would be relaxing in bed while the music plays.

When I spoke to her, she responded and seemed sleepy but not disturbed in any way. I sat down on the bed beside her and chatted with her a few minutes. I told her it was getting close to lunch time. She wasn’t interested and said she would get up “in a little while.” We didn’t have any immediate plans, so I told her I would check a little later.

I checked at noon and again at 1:30. She still did not want to get up. She had a hair appointment at 3:00, so I tried again at 2:00. Still no luck. This time she looked somewhat disturbed and said, “Shhh” when I spoke. She pointed to the ceiling and very softly said, “See them?” I nodded and hoped that she wouldn’t ask me about “them.” She didn’t.

I mentioned that she had a hair appointment. She wasn’t interested. It didn’t matter if I cancelled, but I thought it might help her to get up and out. I encouraged her to go but decided not to push her.

I left the room to cancel the appointment. When I returned, she still seemed a little disturbed. I got in bed with her and put my arm around her. I told her I was there to help her with anything she needed and that I would protect her. We were mostly silent for almost an hour before she spoke. She sounded more awake. I told her it was after 3:00 and wondered if she would like to get up. This time she agreed. She was at ease again.

I’m not sure I understand why. I do know that “things” in her brain are changing all the time. She can change very quickly. Typically, that happens after she rests. My own guess is that her mind wanders a lot and she begins to have delusions and/or hallucinations, some of which trouble her. In the case of not wanting to get up, being patient often works. Comforting her also helps to shift my role from being the bad guy who wants her to do something she doesn’t want to do to that of a partner who really cares and wants to help. There are still a lot of unsolved mysteries for someone caring for a loved one with dementia.

Something else unusual happened that day. As I was helping her dress, she mentioned that she was going to have a baby “tomorrow.” She often thinks of herself as a much younger single woman and mentions that she wants to have children someday, so I didn’t think much about it until she said something else a short time before going to dinner.

We were looking at a family photo book when she said, “Where is the baby?” Things like this always raise a question for me, “What do I say?” The reflexive answer is always “What baby?” or “We don’t have a baby.” I didn’t think they were appropriate. She obviously thought we had a baby. I saw her stuffed bear sitting in a chair a few feet from us and said, “Oh, he’s right there.”

When I do something like this, I am never certain that what I decided will work, but I felt my options were limited. This time I was successful. I brought the bear to her, and she took it in her arms and held it lovingly like a new mother holding her newborn. We spent the next 15 minutes talking about the baby. At one point, Kate spoke to her (the gender changes frequently) and said, “I love you.” Then she looked at me and said, “Did you hear that, she said, ‘I love you, too.’”

It was close to the time I planned for us to leave for dinner. When I mentioned that to Kate, she said, “What about the baby? I can’t leave her.” Then I dug myself a hole and climbed in. I told her I knew someone who could come over and pretended to make a phone call to him. I didn’t think this through but assumed she would forget before we left. Not so. For the next few minutes she waiting impatiently for his arrival. Then she got worried about leaving the baby. I told her he was a nurse with lots of experience, but she continued to be concerned.

My next attempt to address the situation was to tell her I could call him back and ask if he could meet us at the restaurant. She was fine with that. Once again, I depended on her inability to remember what we were going to do before getting to the restaurant.

She continued to hold the bear in her arms all the way to the restaurant and at least once or twice said something about our meeting the nurse. Fortunately, she completely forgot everything but her baby before we arrived. We got out of the car. She cuddled her bear in her arms, and we walked in.

The hostess took us to a table with just two chairs. I asked if she could bring us another just in case Kate wanted to put the bear in a chair while she ate. She brought one, but Kate continued to hold the bear in her arms. I wondered what she would do when the food arrived. I soon found out. She wanted to put the bear down but didn’t know where. I got up and took the bear and placed him in the third chair where she could see him. That worked. We had a good dinner. When we were through, I picked up the bear and gave him to her, and we walked out to the car. There were no more surprises that day.

(See the post above for Part 2.)

 

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Happy Moments and Challenges

I often fear that when I post stories of the more challenging (troublesome? Disturbing?) experiences Kate and I have, you may feel our lives have become gloomy. Similarly, when I post our good ones, I fear that I am failing to convey the trials we face. The truth is that both the good and bad are happening, sometimes in very close proximity. I want you to know about both. Beyond that, I want you to know that our Happy Moments continue to outweigh the more difficult ones.

This morning (See below.) we have had contrasting experiences, and it’s only 9:55. It began when I woke up a couple of minutes past 6:00. As I started to get out of bed, Kate said something to me. She seemed wide awake . . .

The paragraphs above were written about 9:45 Wednesday morning. It is now 2:58 Wednesday afternoon. Since then I have been occupied with Kate, some household chores, and checking email. In a way, the break was fortuitous in helping to make my point about the mixture of experiences we have during the day.

Let me pick up where I left off. She seemed wide awake when I started to get out of bed. More importantly, she seemed perfectly at ease although she did ask me what she should do. I said that it was a couple of minutes past 6:00, and she should probably go back to sleep for a while. That satisfied her, and I went to the bathroom.

Moments later I heard her say, “Hey.” I opened the bathroom door and saw her standing there. She needed to use the bathroom. As is often the case, she was very dependent on me. Since she was up so early and cooperative, I suggested it would be a good time for a shower. She didn’t object.

When we got out, I started to dress her. She wanted to rest before we could finish. That seemed like a good thing as I hadn’t done anything to get myself ready for the day. I left her in the bed while I went to the bathroom, dressed, and fixed breakfast.

I had just put my breakfast on the table when I heard her call. I took my plate of scrambled eggs with me to see what she wanted. She was ready to get up. She was in a good humor, and I had no trouble getting her ready. While helping her, I ate my eggs and gave her a bite. She loved it.  I was glad because that gives me another breakfast alternative for her.

She was in an unusually cheerful mood when we left the bedroom for breakfast. She was excited about the flowers and trees in the back yard. At breakfast, she was very talkative. Everything pleased her. The sun was shining brightly, and she loved looking out the kitchen window at all the “green” in our neighbor’s yard. She raved over the apple juice, blueberries and strawberries, and her eggs. We were off to a great start. I had already thought about writing a more upbeat post, and she was providing all the material I needed.

After breakfast, we went to the family room where I picked up The Velveteen Rabbit, and we sat down to read it. She has never enjoyed it more, but she did look tired when we finished. I asked if she would like to rest. She said she would. That’s when I got my laptop and sat in a chair across from her to write this post.

She didn’t rest long. She began speaking to someone who had apparently appeared in a dream. When she started to get up, I walked over to her. She greeted me warmly as though I were a guest and not her husband. I asked what she wanted to do, and she said she was going “over there” and pointed to the back yard. It is most unusual for her to go out to the patio and back yard. I was pleased.

We spent about fifteen minutes walking around to see all the plants that she admires from inside the house. She was excited to see everything up close. It was another high point of the day.

It was time for lunch when we came back inside. I called in a takeout order from a place nearby. Everything went well until near the time we finished eating. She seemed a little disgruntled and wanted to go home. I was hesitant to do that since the sitter arrived only a few minutes before. I told her we were at home but quickly recognized that wasn’t going to work. I told the sitter I was going to take her home. She remained at the house while we took a 20-minute drive.

Until then, our drives “home” had worked well. That wasn’t so  that day. Before leaving the house and in the car, Kate asked several times if I knew where she lived. Each time, I assured her I did. She seemed quite suspicious. Then as we came within a block of the street where I was to turn for our house, she said, “This doesn’t look right.” She repeated this after I made the turn. When she saw the house, she didn’t believe it was her house. She was hesitant to go in and insisted on my going in first. It seemed to me that she recognized the house as familiar but knew it was not “her” house. Since this was the first time she did not accept “our” house as “her” home, I wonder what will happen next time I try the same thing. (I got to find out yesterday afternoon. It went well.)

When she saw Mary, she didn’t recognize her at all; however, she gave her a warm welcome. I started to go to the kitchen, but she wanted me to stay with her. I sat beside her on the sofa and picked up The Velveteen Rabbit again. She shrugged but listened. She didn’t respond at all the way she usually does and had earlier that morning; nevertheless, I could tell she was following the story. She got tired before I finished and put her head down on the pillow. I finished the book while she rested. I went to the grocery store and back. I was at home the rest of the time the sitter was here.

After Mary left, I decided we needed a boost for the day. I took Kate to Casa Bella for dinner. We had a nice meal and returned home for the night. All was well. It wasn’t our best day, but it had some very good moments. I felt good.

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Kate is Keeping Me Busy.

The other day, I got a message from a Twitter friend who asked how things were going with Kate and me. She had noticed that I haven’t been as regular in posting as in the past. I explained that with the progression of Kate’s Alzheimer’s life was simply getting busier. This past Sunday was a good example of what can happen in a single day.

It began early that morning. I was about to get dressed at 6:30 when Kate woke up and wanted to go to the bathroom. Afterward, I helped her dress and prepared a light breakfast. This was the earliest I ever recall her getting up for the day since she was a teacher and librarian. It was also unusual in that we ate breakfast together for the second time in the past few weeks.

Since she started the day so early, I knew she would want to rest after breakfast. She fooled me. She wanted to go home. I took her for a thirty-minute ride around town.

Once home, we spent an hour and a half looking at one of her photo books and our wedding album. Finally, she wanted to rest. That only lasted 30-45 minutes.

I suggested we go to lunch, but she didn’t want to get up. I told her she looked afraid and said I could help her. She said she didn’t “know anything” and didn’t know what was happening to her. I told her again that I could help and mentioned she had had experiences like this before. I added that in the past she began to improve after getting up. That gave her the incentive to get up although it didn’t reduce her anxiety.

On the way to the restaurant, I put on some music she likes as an effort to calm her. She didn’t pay as much attention as she usually does, and her anxiety won out over the music. She was worried about what people would think of her. She said, “They will think I’m an idiot.” I assured her they would probably not even notice anything. She thanked me and said that made her feel better. Her insight and self-awareness impressed me during this whole episode. She recognized that she was progressively feeling better.

Before arriving at Andriana’s, she said, “I know you’re my husband, but I don’t know your name.” Then she remembered it and was excited. She said, “I think I’m getting better. Maybe I’ll start remembering more.” I assured her that she would. She was bolstered by that.

She was very uneasy as we entered the restaurant. She was still afraid of what people would think about her. She improved quickly when we met the hostess who greeted us warmly. She is one of the most welcoming of the ones we know. This made her feel comfortable.

That didn’t last long. When we took our seats, she was worried, and it showed. Two women at the nearest table noticed something was wrong when Kate started to cry and wanted me to hold her hand.

It wasn’t long before our server came to the table. She, too, is very friendly and told Kate how nice she looked. Tears welled up in her eyes as she profusely thanked the server and told her how much that meant to her. She wanted to stand and give the server a hug, but the server explained and kept her social distance.

Kate continued to talk about the way she felt. She noted that she didn’t know who I was but felt like she knew me. Almost within seconds, she called me by name. She was encouraged. I picked up on that and told her she would continue to feel better; however, I wasn’t surprised when, moments later, she couldn’t recall my name or that I was her husband. She continued to feel more comfortable as we ate our meal and was fine long before we left.

Once we were home, we started on one of her photo books but soon stopped for her to rest. When she finished resting, she looked at me and wanted to know who I was. She wasn’t worried and seemed comfortable with me. She invited me to sit on the sofa with her. I said, “I’m Richard, your husband.” She didn’t buy the husband part at all and laughed. I didn’t try to convince her; however, I picked up our wedding album and proceeded to go through some of the photos. I was never sure that it had any impact on her memory, but she accepted what she saw without any questions.

We had a little time before dinner, and I suggested we call a longtime friend of hers who was her matron of honor. She wanted to call, but she told me she wanted me to do most of the talking. To my surprise she did quite well. It was not a lengthy conversation, but she seemed at ease and enjoyed herself.

Kate has always been appreciative of my care for her. Periodically, she makes an extra effort to tell me how much that means to her. She was like that at dinner that evening. It means a lot to me that she is appreciative, but I feel a touch of sadness at moments like this because I think it is heavily driven by a recognition of her dependence on me.

After dinner, she said, “Are you ready to go?” I knew that was the signal that she was ready to “go home.” We went out for another drive “home.”

We returned thirty minutes later and went to the bedroom for the remainder of the evening. It was later than usual, and I was eager to get her ready for bed. She is usually ready herself, but that was not true this time. She started arranging the things on her bedside table. Ordinarily, that wouldn’t be a problem. This time, however, she seemed obsessed about getting it just right. She invited my participation as she created a new arrangements and stood back to give it a critical eye. After almost thirty minutes, I was ready for my shower and wanted to take care of getting her in her night clothes first. She didn’t want to be rushed. Finally, I told her I was going to take my shower and would help her after I got out.

When I turned on the shower, she called me. She wanted help with her night clothes. I turned off the shower and got her into bed. I also turned on YouTube for music videos to entertain her.

After my shower, I took a seat on my side of the bed and read a book. Less than an hour later, I turned off the TV, turned on some soft music on my audio system, and prepared to get in bed. It turned out that Kate was engrossed in the YouTube music and very disappointed I had turned it off. I turned it on again and got in bed.

Kate was sitting up in bed with her back against the headboard. She continued watching the music videos for another hour before calling it a night. It was a long day for both of us.

Not every day is like this, but increasingly I am devoting more attention to Kate while at the same time trying to keep up with household responsibilities and other personal activities. This does create more stress, but I am far from overwhelmed at this point. That is because I back away from other things I need to do. One of those is writing new posts. I’m all right with that because I think I am capturing enough to convey what “Living with Alzheimer’s” is like for us.

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A Day of Surprises

Yesterday was a very good day for Kate, but I wasn’t sure when she woke up. About 8:30, I heard her say, “Hello.” <pause> “Hello.” Her voice was rather calm. When I reached her, she looked wide awake. I was about to give her a very lighthearted greeting when I noticed that she looked very concerned. I shifted gears to mirror her feelings. She told me she was glad to see me. I asked what I could do to help her.

That initiated a conversation that was a good thirty minutes long. She wanted to know if “they got it.” I never learned nor did she ever hint at what that was, but I told her “they did.” In most situations like this, that would be enough. This time she wanted to know how I knew “they got it.” One fib leads to another, and I told her I was there when they took it. Then she wanted to know who took it. I gave her the name of a friend of her mother’s. She didn’t remember the friend, and I had to give a little explanation.

That ended her questions momentarily. She said she was very relieved. She had forgotten to get someone to take it. I assured her it was taken care of and that she could relax. That didn’t end her concern. Several times, she asked me if I was sure it had been taken and who had taken it. When she was fully convinced that everything was all right, I took her to the bathroom to get ready for the day.

Although it was a very good day, much of the time she did not recognize me as her husband. The first sign of that came as we walked to the bathroom. She asked my name. I told her, and she expressed her appreciation to me for helping her. She went on to say that she liked me. Later, she asked my name again and then asked how she should address me. “Mr. Richard?”

It was still too early for lunch when she was dressed, so I prepared breakfast for her again. She was talkative, and we had a very pleasant time together. Afterward, I was prepared to sit down with her and look at a photo book or read something to her. I took her to the family room and then returned to the kitchen to get my coffee. She took that moment to pick up the Velveteen Rabbit. I assumed that I would read it to her; however, when I asked, she said she just wanted to look through it herself.

I had mixed emotions about her reaction. It was the first time she had ever declined my offer, and she never spends much time trying to read. I actually enjoy reading to her, but I also had other things to do. I decided it was good to let her read on her own and brought my laptop into the room to work on a slide show of photos I have created for our 57th wedding anniversary tomorrow.

I took a seat across from her and was prepared to stop at any moment to read to her. The big surprise was that she spent well over an hour with the book. Then she picked up a family photo book and began to read the text accompanying the photos. With both books, she meticulously moved her fingers from one word to the next. I felt two emotions, sadness that she had to work so hard and joy that she seemed to be deriving pleasure on her own. Several times I repeated my offer to help. She never accepted, but she did convey that she didn’t feel like she understood what she was reading.

She continued until Panera delivered our lunch. It arrived thirty minutes before the sitter was to come. I told her lunch was ready, but she wanted me to come to her. She was looking at the flowers and photos in the room as well as the back yard and the forest of trees on our neighbor’s property behind our house. This is not unusual, but she took far more time to look and express her feelings about the beauty she saw. As always, I took pleasure in seeing her so enthusiastic. I reminded her several times that I had her lunch on the table, but she didn’t get to the table until the sitter arrived.

We took another thirty minutes to eat our lunch when I took her to the family room. I felt like it would be too abrupt to rush away immediately. Sometimes I sit down with her to look at one of her photo books. She gets tired quickly and wants to rest. That is what I expected again. I handed her one of the books, and she immediately started going through it on her own. When I told her I needed to run a few errands and would return, she looked sad but didn’t protest or ask to go with me.

The next surprise came when I returned almost an hour later. She was seated in the same place looking at the same book. She looked content, so I didn’t even go into the family room. I made a couple of phone calls and worked on the computer.

At 4:00, I heard her ask Mary where I was and when I would be back. Mary told her I was home and working in the kitchen. In a couple of minutes, she walked into the kitchen. She was glad to see me and said that she was ready to go. I told her there were a few things I wanted to finish before then and to give me a few minutes. Less than five minutes later, she returned with a copy of The Giving Tree, Winnie the Pooh, and her iPad. She wanted to know if I was ready. I told her I was. It was almost 4:15, but I went to the family room and told Mary that she could go. Then Kate and I went to the car along with the things she had been carrying.

I had ordered dinner from a caterer earlier in the week and was scheduled to pick it up at 5:00. It’s about fifteen minutes from our house. That gave me more than enough time, so I drove around until going to her place for our dinner.

As soon as we entered the house, she responded as though it was the first time here. We walked into the kitchen where I started to get the food on the table. She commented that this was the first time she had been here and admired everything she saw.

The next surprise came after dinner. We were walking to the back of the house when she said, “I just want to thank you and your people for everything you have done.” She continued to express her appreciation for several minutes . What I surmised was that she thought she was in some type of lodging, and I was the proprietor with a staff to take care of the guests.

As I helped her get ready for bed, she came back to this topic. She thanked me again and talked a little longer. This was another surprise. She often talks about her working with a program of some type that helps people with education, job skills, and/or financial aid. This time she thought I was directing such a program in which I operated a place for guests to stay and employed people to help them financially and with job skills.

The last surprise came after I got in bed two hours after she did. She hadn’t been asleep at all. That surprised me because she had talked about going to be early when we were driving around before dinner, at dinner, and afterwards. Not only that, but she had gotten up somewhat early and not rested at all during the entire day. After I got in bed, she said, “What do we do now?” I told her it would be a good time to relax and go to sleep. She said, “Good.”

She is still sleeping at 10:15. That’s no surprise. I wonder what is in store today.

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From Low to High in Thirty Minutes

In my previous post, I mentioned that recently we’ve had a range of experiences from high to low. Sometimes the change comes quickly. That was true night before last. I was about to get in bed when I noticed that Kate was awake and looked frightened. I asked if I could help her. She asked my name and then hers. She told me she was scared, that she didn’t know anything. Typically, this happens in the morning. She is not normally this way at night. She was also more frightened than usual.

I took my usual approach to her when this happens. I tried to be as reassuring and comforting as possible. I told her I thought I could help her and that I knew a lot about her and her family. I mentioned that we have a number of family photo books that have a lot of information about her family. She said she would like to see them.

I brought her the “Big Sister” album that her brother made for her. I didn’t try to go through the book. Instead, I focused on selected photos and sections starting with the cover photo of her and her brother. She has always been taken by that picture. We went through a few early pictures soon after each of them was born. Then I skipped to a section that has several of our wedding pictures. It wasn’t long before she was relaxed and said, “I feel better now.”

The quickness of her change was striking. I don’t think she remembered her past any better than she had before we started, but the pictures and information gave her a sense of comfort. No longer was she adrift without any connection to world. Kate’s brother Ken, who also has Alzheimer’s, created the book to help her as her memory faded. He could not have known how valuable it has been. I am grateful to him for this gift that keeps on giving.

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Simple Pleasures

I’ve learned that predicting what Kate will be like from one day to the next is far from easy. That is not to say she has bad days. If any day has been a bad one, it would be one of the days she has slept/rested until late in the day. I would call those bad because they were so far from her happy times.

I was hoping that Saturday might be another day like Friday. I got my wish. She woke up in a good mood. Everything was fine. Unlike the day before, she was up before 8:00. That meant another time I was able to fix her breakfast and sit with her while I drank my coffee. Despite the fact that it interrupts my normal routine, I enjoy this time with her.

Both days, she was unusually childlike. Saturday morning, she asked permission or approval of just about everything she did. It started with the bathroom. That isn’t unusual. It is normal. A couple of weeks ago as she was about to sit on the toilet, she said, “You’ll have to tell me what to do. This is the first time I have ever done this.” Her seeking permission continued throughout breakfast and the balance of the day. She preceded almost every sip of juice and every bite of her fruit and cheese toast by asking if it was all right to do so. Although I have considered the possibility that she is worried about getting my approval, I think it is more likely that she does this because she is uncertain of what to do. She expresses that in many ways almost every day, but it was especially noticeable that day.

After breakfast, she rested a while and then spent some time looking through one of her photo books before lunch. She was very interested. I was glad to see that because she hasn’t been as enthusiastic recently. Like the day before, it was a day of simple pleasures. We interspersed moments with photo books with periods of rest. It was a very pleasant day.

That changed a bit after her last rest in the afternoon. I got out the “Big Sister” album and began by pointing out the cover photo of her and her brother. I immediately met resistance when she made it clear that she and her brother were not in the picture. She didn’t know who they were, but she was confident they were some other children. I flipped through a number of other pages, and she responded the same way about pictures of her mother and father. She wasn’t interested in going further.

The rest of the day went well. As I got into bed that night, I got a reminder of the difference between her rational and intuitive knowledge of me. She is almost always awake and glad to see me when I get in bed. That was especially so that night. She had a beautiful smile on her face. Then she asked, “What is your name?”

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Going Home

In my last post about Kate’s wanting to go home, I suggested we might be heading for a new routine of taking a ride in the car after every meal. That has become a pattern since then. It happens almost every night when we finish dinner. It has also happened a couple of times after lunch. It has become so routine that she doesn’t ask to go home. She just says, “I’m ready to go now.” She does sometimes say she wants to go home at other times during the day, but I have been distracting her attention to something else. That works most of the time.

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Alzheimer’s Continually Presents Surprises

As I’ve said many times, change is a big part of our lives now. Sometimes the changes seem to come out of nowhere and, thus, are more surprising than others. Yesterday afternoon, Kate experienced two changes in her mood and behavior that caught me off guard. The first one demanded a lot of my attention. I welcomed the second.

Our day had been a very good one. She was up at 7:30. She was confused, but it was a time when she was ready to do whatever I suggested. I told her I thought it might be good to get up and have breakfast. I had already finished mine but enjoyed having my coffee while she ate.

After breakfast we adjourned to the family room where I thought she would immediately decide to rest, but she didn’t. Instead, she was interested in looking at a photo book. It wasn’t long before she was tired and rested until time for an early lunch.

She rested again as soon as we finished lunch. She didn’t sleep much, and the last hour she tried to read a booklet that her mother’s Sunday school class had given her for her birthday in 1989. It was filled with things the class had heard her say many times during the years she had taught. I asked several times if I could read some of it to her. She finally accepted, and we both enjoyed ourselves.

Then it was time for dinner. I placed an order at a nearby Mediterranean restaurant. On the way, Kate asked for her lipstick. I was surprised. It had been months since she asked about lipstick, and I stopped carrying it. (I suspected that she must have thought we were going to see someone, but she didn’t say anything that would confirm this until much later.) As it turned out, this was the beginning of the first significant change in her mood and behavior. I explained that we could get it when we got home. I never thought she would remember it. This was another time I was wrong. As we were eating, she asked for it.

I went to the bedroom and brought it back to her. I started to open it myself, but she wanted to do it. She extended the lipstick too far, and it broke off. She grabbed it with her hands and put it on her lips. In the process she made quite a mess on her hands and her cloth napkin. I got something to wipe her hands, but it wasn’t easy to remove all of it.

As we continued eating, she asked about the location of her salmon and her cucumber salad on her plate. I hadn’t thought much about it, but she had pushed them around after I served her. I told her it was fine. I added that she could put them wherever she wanted.

It got more serious later. She had finished eating and was now applying her aesthetic tastes to the arrangement of her leftover food. That would have been fine, but she wanted my help. I said something that was a playful response to her request. That was the wrong thing to do. This was a serious matter for her. She had pushed all the remaining food together toward the center of the plate. She was concerned about a couple of blank spaces where there was no food. I picked up a couple of pieces of cucumber and filled in one of the gaps, but she wasn’t satisfied. She started moving grains of rice and pieces of tomato to balance the “food art” she was creating. She picked up several things and put them on her placemat. During this process that took about twenty minutes, she mentioned that “she would like it better over here (referring to portions of the food). She wanted to know what I thought. I said, “It looks good to me.”

Then she extended her art beyond the bounds of her plate. She crumpled a piece of a paper towel and put it on the placemat and pushed it toward the center of the table. She also picked up the two coasters and made them part of the art. Subsequently, she added two catalogs, a coloring book, and crayons. At some point, she said something about wanting it to look right for “them.” In this case, she was talking about people who were coming to the house. Finally, she stopped, but she wanted me to put the plate with the food in safe place. I put it in the refrigerator.

Then we went to the bedroom where I helped her get ready for bed. She has been getting in bed around 7:15 or 7:30 recently. This time she got into her night clothes but wasn’t ready for bed. She wanted to know what she should do. I asked if she would like to look at one of her photo books. She did, and I brought her the “Big Sister” album. I knew she would have problems with it, but I figured she would probably give up and go to bed. Wrong again. This came at a time when I wanted to clean up a few things in the family room and kitchen before taking my shower. She was insistent on my helping her. She seemed to be under pressure for something.

She asked what she should do. I explained that she should go through the book looking at the pictures. I told her she would see a lot of pictures of herself, her brother, and her mother and father. This didn’t help her. I pointed to a picture and told her some of the things I noticed about it and told her that was the kind of thing she could do. I was surprised when she seemed to get the idea. She started her own narrative with a photo. Then she said, “It’s your turn.”

I told her there were a few things I needed to take care of and would also be taking a shower. I said I would come back to her. That’s when she said something about our preparing for someone to arrive and that we were going to put on a show for them with the photo book. She would tell her story with one photo. Then I would tell my story with another and so forth. I helped a little longer before telling her to continue while I took my shower.

I was sure she would become frustrated and give up on the album by the time I returned. That was when I got the second surprise. She had changed completely. She had gone through the entire book and was on the last page or two. This was a surprise because she doesn’t usually spend that much time when she is looking at it by herself. She was her happy normal self. Apparently, she had forgotten about the guests who were coming and no longer had to worry about being prepared for them. Whatever the reason, it was nice to end the day with her in a good mood.

I should add that I had not previously observed anything that would make me think she was “sundowning;” however, her behavior was different enough from other situations that I thought about that. In the future, I will be more attentive to this possibility.

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A Sad Moment

Over the past few days, Kate’s memory has seemed even weaker than usual. She often fails to remember her name and the names of her mother, father, and me. When I show her pictures or remind her of things about them, she generally shows a spark of recollection. That is less true recently and especially so today at lunch and afterward.

She has had trouble with her name and mine all day. During lunch, she asked my name, I said, “Richard.” She said, “I can’t call you that.” She struggled with how to explain, and I said, “Because you feel like you are too young to call me by my first name?” She acknowledged that was true. I said, “How about Mr. Richard?” She liked that.

As she often does, she asked the “name of this place.” I told her it didn’t, but it had an address and gave it to her. Then I said, “Some people think of it as Kate and Richard’s house.” She gave me a strange look. It was obvious that she couldn’t understand why it would be called that. I didn’t say anything more.

We were seated at our kitchen table, and a few minutes later, she said, “This is a nice room.” I agreed and told her I thought she would like to see the other rooms. When we finished eating, I took her to the dining room and told her I wanted her to see a few things from her parents’ house. She gave me another strange look and said, “Did I know my parents?” I told her she did. She said, “I don’t remember anything about them.” This was not the first time I had heard her say this. I told her I thought I could help her remember and started giving her the usual tour.

She expressed less interest than usual. She couldn’t get her mind off the fact that she didn’t remember them at all. She asked me where they are. I decided not to say they were gone. Instead, I said, “They’re in Fort Worth.” She said, “Did they like me?” I told her they loved her very much. She said, “If they did, why haven’t they seen me?”

I cut the tour short when she asked if I had any pictures of them. I took her into the family room to look at the “Big Sister” album that her brother had made for her. We didn’t get very far before she said, “I don’t remember any of this.” She was tired and asked if she could rest a while. That’s what she is doing right now. When she wakes up, she won’t remember forgetting her parents. The question is “Will she be fine, or will there be something else that disturbs her? Either one is quite possible.

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Caregiving and Rational Thought/Abilities

Two years ago, I read The Dementia Handbook by Judy Cornish. That book has had a significant impact on the way I look at dementia and the ways in which Kate and I have approached the topic. The key piece of learning was the distinction between rational and intuitive thought processes (or abilities). PWD lose their rational thought/abilities, that is, their ability to remember things like people, places, facts, and events as well as the procedures or steps to accomplish the activities of daily living.

Most people are aware of these symptoms, at least in a general way. That often leads to the conclusion that there is no hope for PWD. Cornish stresses that the loss of these abilities does not mean the end of happiness or even joy. Her view is based on the fact that PWD retain their abilities to experience the world directly through their senses and that much pleasure and satisfaction with life comes to all of us this way.

This fits rather nicely with an admonition that is often given to caregivers of people with dementia. “You have to live in their world. They can’t live in yours.” This and Cornish’s work on rational and intuitive thought goes a long way in explaining why Kate and I have gotten along so well. That is largely because I enjoy many of the things that appeal to her through her intuitive thought. It is also because I derive so much pleasure from her own enjoyment.

I have made much of the importance of Kate’s intuitive abilities in this blog. That and my belief that I should “live in her world” leads me to suspect that some of you may think I believe rational abilities are of secondary importance to those that are intuitive. Experiences like those in my previous post probably reinforce that belief. For that reason, I would like to comment on the role of the rational ones for a caregiver.

My view is that caregiving, as well as everything else we do, is better when we rely on both our rational and intuitive skills. My emphasis on the intuitive ones is based on the fact that Kate and I are able to derive so much daily pleasure from them; however, even those things are influenced by my use of rational abilities.

I’ve read a number of books and articles by and for caregivers. Many of them are memoirs of their experiences while caring for someone with dementia. Others are “advice books.” The very nature of the latter taps into the rational abilities of caregivers. The level of detail varies, but they all attempt to provide other caregivers with a set of guidelines to help them avoid or minimize the problems they are likely to encounter. They are often lessons that the authors had to learn the hard way. They include advice like I mentioned above. “Live in their world.”  “Maintain a daily routine.” “Don’t contradict.” Some identify activities they have found helpful like music, art, trips to museums or zoos, coloring books, etc.

The value of rational abilities goes well beyond those designed to deal with specific issues experienced by PWD. They involve making sure that all legal and financial issues are in order, scheduling routine and not-so-routine health and medical appointments, deciding if and when it is right to bring in help and what type is best for one’s particular situation, deciding whether to keep a loved one at home or rely on a facility like assisted living or memory care.

The list of such things is endless. During any given day, caregivers must make decisions that depend on their rational abilities. They are especially important because PWDs have lost their own abilities to do those things.

Because Kate and I have experienced joy while “Living with Alzheimer’s,” I’ve been interested in the memoirs of caregivers who have had similar experiences. In each case, the caregivers have been very active in planning and managing the daily routines of their loved ones. Caregiving is not an easy task. Success requires both rational and intuitive abilities.