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Happy Day

When people ask about Kate, I often say that she is now at Stage 7 in her Alzheimer’s journey. I sometimes add that it is the last stage that can last for years. I feel sure my reply conveys the seriousness of this phase of the disease. For that reason, I usually add that it doesn’t mean that we don’t continue to have moments of joy. We do, and one of the interesting things to me is how often those moments are intertwined with the common symptoms of this stage. I am grateful because her life is now filled with more delusions, hallucinations, and confusion than she has experienced before. Yesterday is a good example.

Shortly after 8:00, I heard her say something and went back to the bedroom. When I reached her, she seemed wide awake but confused. That may seem a strange combination. What I mean is that she looked and sounded fully awake, but her confusion was obvious as I tried to get her up and into the bathroom.

I told her I was glad to see her and asked if she was ready to get up. She was but said, “What should I do?” I suggested she first move her feet and legs to the side of the bed. She didn’t understand what I meant, so I gently pushed them to the side. She said, “What now?” I told her to hold my right hand while I lifted her with my left. Some mornings this is difficult. She seems to be dead weight. This time she pulled my right hand, and I was able to lift her to a sitting position. It is not unusual for her to scream when I do this. She didn’t this time.

She was very uneasy getting to her feet, but we got to the bathroom without a problem. When I told her to take a seat on the toilet, she was confused and didn’t want to. That is pretty common, but this time she wanted to know why she should sit on the toilet. I gave a very simplified explanation that she couldn’t understand. Then I told her we could skip it. After I said that, she agreed to sit down. Afterwards, we washed her hands, and I gave her a toothbrush to brush her teeth. She didn’t understand what she was to do with it. I helped her get started. Then we went back to the bedroom to dress. That went smoothly.

For a very long time, Kate has responded with great interest when she sees the plants and flowers in our family room, on our patio, and the back yard. That has been less frequent in the past few weeks. It was back yesterday, and we took a few minutes to enjoy them together.

Once she was seated at the kitchen table, I gave her a glass of apple juice and her morning meds. She loved the juice (which she refers to as water) and took her pills without a protest. She actually seemed pleased I had given them to her.

The best was yet to come. I fixed her a slice of cheese toast. Kate didn’t remember having eaten it before and responded with enthusiasm. She ate it more quickly than usual, and I fixed another one. She was quite talkative while eating and after. (I may have noted in an earlier post that she seems to feel especially comfortable at the kitchen table and often wants to linger long after she has eaten. I think she likes the fact that the table is located beside a large window overlooking our neighbor’s front yard and that of another neighbor across the street. Two different sitters have commented on her wanting to stay at the table for as long as an hour after eating.)

I joined her at the table right after fixing her cheese toast. She asked my name. When I told her, she gave me her name, something she often doesn’t remember. It was one of many times during the day she didn’t remember my name or our relationship. Then she began a lengthy conversation. I wish I could tell you what she said, but her speech was so garbled that I couldn’t make any sense of it. Everything she said emanated from a delusion. I do know that she mentioned her mother and later in the conversation made references to other people (“she,” “he,” “they”) and assumed that I knew them. It was light-hearted chatter, and she laughed a lot over 30-45 minutes. I loved seeing her enjoy herself.

During all this, an album of very relaxing music was playing. “Clair de lune” caught her attention. She stopped talking and said, “Listen.” For the balance of that piece and into the next, she closed her eyes and put her hands together as though she were praying. This is not the first time she has done this. I always find it touching. The day was off to a good start. It was a very “Happy Moment” for both of us.

We finally adjourned to the family room where she wanted to rest. I took that opportunity to take my morning walk (inside the house for those of you who are new to this blog). I hadn’t walked ten minutes before she was sitting up. Then we spent a short time looking at one of her photo books before getting a takeout meal for lunch.

The sitter arrived just as we were finishing lunch. I got up from the table to get ready to leave, and the sitter took my place. It was a very natural transition. Kate was perfectly happy with Cindy as she has been since her first few visits . That makes me feel much better when Ieave.

When I returned, they were seated on the sofa looking at a photo book and having a grand time. Kate was sorry to see her go. Their relationship is everything I could have wanted and more.

The rest of the evening went well. We had a pleasant dinner with a takeout meal at home and encountered no challenges getting ready for bed. Kate had not rested at all during the day. That’s rare. As a result, she went to sleep rather quickly but awoke briefly when I got in bed. She was still happy, and so was I.

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Unpredictability: Part 2

Early last week, I wrote a post in which I talked about Kate’s unpredictability and illustrated with the changes in her sleeping pattern. By itself, that is not a serious problem. It’s something to which I can adapt; however, the source of this change concerns me. She is far more insecure than ever and is often uneasy about getting up. For a long time, she has experienced anxiety upon waking, but it seems more serious now. Previously, I was able to get her up without any problem. Then she would begin to feel better. Her response now is to withdraw. That makes it hard for me to help her.

The change that has bothered me most is the first signs of hostility. So far, that has involved occasions when I am helping her in the bathroom, dressing in the morning, and getting her night clothes on.

One of these occurred one evening last week. We had a good afternoon though a short one since she got up a little later than usual. As sometimes happens, it was almost 3:00 when we finished lunch. She rested about an hour or a little longer. She was in a good humor when she finished resting and expressed an interest in the house. That led me to take her on a tour, something we haven’t done lately. We didn’t get very far, but that was because of her interest. It took a long time for me to point out items of interest and listen to her own reactions.

She rested again before going out to dinner. She seemed fine at the restaurant. All was well until we got to the bedroom. Our normal routine is to go first to the bathroom to brush our teeth. When I mentioned it, she said, “I’ll do it later.” I brushed my teeth. Then I got her night gown and took it to her. That’s when the trouble began. She snatched the gown from my hand and said, “I’ll do it later.” I told her that would be fine and settled in to watch the evening news.

At 8:00, I asked if she was ready for bed. She wasn’t, I told her I was going to take my shower but was very careful not to say it in the same tone of voice she had used. I knew that would exacerbate the problem and hoped that when I got out of the shower, her mood would have changed. That wasn’t in the cards.

When I came out of the bathroom, she was looking intently at the bedspread and running her fingers over it as though she were writing. I didn’t say anything. In a few minutes, I asked if she would like to get ready for bed. She was ready, and I told her I would help her. I walked to her side of the bed, picked up the night gown and put it next to her. Then she said something I didn’t understand. All I picked up was that she saw other people in the room and for some reason wanted me to sign my name on her gown. I did exactly what she had been doing on the bedspread. I pretended to sign my name on the front of her gown. After that, she asked a couple of questions about the people in the room. I told her they were gone now.

When I picked up the gown, she said, “I’m not wearing this.” She was adamant about it and added, “Get me something else.” I took the gown and went to the closet and came back with another. I said, “Let me help you.” She gave me a stern look and said, “You can, but we’re going to do this together. You understand?” I said, “That’s fine. I like for us to work together as a team.”

She took the gown and tried to figure out how to put it on. Quickly, she realized that she needed my help. Soon after that, she was in bed. She was awake when I called it a day over an hour later. She seemed to have forgotten the whole incident. It was a typical close to our day. I told her I loved her. She said the same to me.

The next day, we had a similar experience. She was up even earlier and was very cheerful and talkative. As she did the day before, she expressed great interest in the house. We tool a brief tour of the dining room and living room. Then we came back to the family room where we looked at photo books until time for lunch. It was a very nice morning and afternoon. That evening we had a repeat of the night before. Since then, there have been a couple of other times when she was rather hostile.

Concurrent with this change is an increase in her delusions. They often involve people who are in the house. This results in her whispering so that “they” can’t hear her. She is very insistent on my speaking the same way. Other times, she is concerned about some kind of project on which she is working. I haven’t been able to figure out what it is, but she is very worried.

My impression is the hostility with me arises for two reasons. First, I think they come at moments when she has forgotten who I am and doesn’t trust me. Second, she is worried or frightened by her delusions.

Once again, I turned to The Velveteen Rabbit (TVR) as a way to calm her and ease her concern about me. It is amazing how effective that can be. A few nights ago, she was quite troubled when I got in bed. It involved an event on which she was working and was concerned about the people working with her. I tried to divert her attention to other things. That didn’t work. Then I read TVR to her. She was attentive and responded audibly from the beginning. That is not typical. It usually takes a while. She calmed quickly. At the end, I thanked her for letting me read to her and told her I liked the book. She said she liked it as well. She asked me a number of questions about it. I was surprised because the questions indicated that she had grasped at least some of the content.

This morning I saw a tweet that said, “The #dementia caregiver’s goal is to communicate “Let’s solve this together.” I try to emulate this approach, but I don’t seem to be doing so effectively at these moments. That is something I will have to work on.

Although many things are unpredictable, I am happy to report that the day virtually always ends on a positive note. I would say 99.9% of the time. When I get in bed, I say, “Thank you for another nice day. We always have nice days, don’t we?” She agrees, and I tell her I love her. Occasionally, she does not reciprocate by saying she loves me. That’s when she doesn’t remember that I’m her husband. On those occasions, she sometimes laughs. Regardless of what she says, she is both at ease and happy. I can accept that. It’s far better than butting heads.

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One More Surprise for the Day

Not long after my previous post, I checked on Kate. She was awake and said she was ready to get up. I’ve learned not to rush her and was very careful not to do so. When it came to actually getting up, she was very hesitant despite my precaution. This has happened several times over the past week. Once on her feet, she began to talk as though people were in the house or would be. She assumed I knew what she was talking about. This is also something that is not particularly unusual.

On the way to the bathroom she continued to talk. I have no idea what she was talking about. Her words were a mixture of words I understood with those that were garbled. She was having hallucinations about people and things in the room. She was very uneasy about going into the bathroom. It took me a while to coax her.

While on the toilet, she got some toilet paper in her hand and looked at it. She asked me if I had one too. Then she said something that made me think she thought the toilet paper was a man. It was a challenge to talk with her because I didn’t understand much of what she said.

She said she didn’t know what to do. I told her to get up from the toilet. My plan was to give her a shower. I have found that it is easier to get her in the shower if I don’t inform her until just after she gets up from the toilet. That didn’t work this time. She didn’t want to take off her gown. I tried to explain that she would need to take it off for me to get her clean. She continued to resist.

I decided the shower would make things worse. We brushed her teeth. She was still agitated. I felt it would be better to let her rest a while. Perhaps, she would be fine after that.

I went back one or two other times. She seemed to be over whatever had gotten to her; however she still didn’t want to get up. I bought a new bed last week. It was a little too high for Kate, and the mattress company was sending out someone to lower it for me. It was almost 2:30 when I received the call that they were on the way. That was when I felt the need to get her up. She responded well and was fine after that.

Last week, I bought her a robotic cat that meows, purrs, raises its head, and blinks its eyes. For almost an hour she was entertained by her cat. Then we had a Zoom call with our son. When we finished, it was time for dinner. We went to Andriana’s and had a very nice meal. She was rather confused when we got home. She asked where we were. When I told her, she wasn’t happy but didn’t say why. Fortunately, I had no trouble getting her ready for bed. She is resting peacefully though not asleep. It’s been a full day. I wonder what tomorrow holds.

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All’s Well That Ends Well

Morning confusion isn’t something new for Kate. She isn’t usually frightened by it, but that happened earlier this week. She was sleeping soundly at 11:00 when I went in to wake her. The look on her face is always the first sign of how she is feeling. She often smiles. Sometimes, she is quite cheerful. Sometimes, I see the look of confusion. This time, I sensed fright and said, “You look scared. Are you?” She nodded.

I launched into what has become a common routine. I try to be reassuring and say, “I can help you. You and I met at TCU and have been together ever since.” She looked doubtful that I could do anything for her. I went on to tell her that I knew a lot about her and her family. Then she said something that I’ve never heard her say before and can’t remember her exact words. She conveyed that she wasn’t able to think of anything, something that fits what I have perceived before as her mind’s being a “complete blank” though she had never been able to articulate it.

When I repeated that I would like to help her, she said, “What can I do?” I told her it would probably help if she could get up and get dressed. I went on to say that I thought she would feel better after she got up. She surprised me when she said, “You’re probably right.” I was encouraged by that, but when I asked her to give me her hand to help her, she said she couldn’t do it.

I sat down on the side of the bed and talked with her a few minutes and tried again. She wasn’t ready. I gave her a little more time but continued to sit with her. When I tried again, she was cooperative. She was very uneasy as we walked to the bathroom and had the normal confusion about what to do once we were there. As we completed each step, she seemed to be more at ease. By the time we walked into the family room on the way to the kitchen, she seemed fine. We stopped a few minutes for her to enjoy the flowers and plants and to rearrange a few things on one of the tables.

Breakfast went well. She enjoyed her food, and the music I was playing. When she finished eating, I asked if she would like for us to spend some time together in the family room. She wanted to stay at the kitchen table. I don’t think I have commented on this before, but she seems very comfortable sitting there. One of the sitters told me that once she wanted to remain there after lunch, and they stayed there for a couple of hours.

That evening she was fine when she got in bed. Two hours later when I was about to get in bed, she had that look of fright on her face and asked who I was. She wasn’t reassured after my telling her. Then I thought of The Velveteen Rabbit. She wasn’t particularly interested, but I read it anyway. Midway through the book, she was making her audible responses to the passages I read. She was fine when I finished. I said, “I love you,” and she said, “I love you, too.” Another rough edge smoothed out.

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Sleep and Rest

Long ago I learned that people with dementia reach a point at which they sleep more. I’ve been mindful that would happen, but I wasn’t prepared for the way that is happening with Kate. I just thought she would simply start going to bed earlier and getting up later.

I’ve not been able to identify a consistent pattern for her. Until two years ago, she went to bed between 8:00 and 9:00 and got up early enough for us to get to Panera for a blueberry muffin between 9:00 and 10:00. In addition, she would rest a while after lunch. That would give us time to spend an hour or more at the café at Barnes & Noble before going to dinner.

When she started sleeping as late as 11:00 or 11:30, we stopped going to Panera. It was time for lunch. Along with that, our afternoons changed. She wanted to rest immediately after lunch. That would last as long as two or three hours which took up most of the afternoon. That put an end to our visits to Barnes & Noble.

This pattern changed with the arrival of COVID-19. Kate was losing her ability to work jigsaw puzzles on her iPad long before then, but she lost it completely after we began sheltering. That was her last self-initiated activity and had a significant impact on her sleep and rest. As recently as a year ago, she could easily spend 6-8 hours a day working her puzzles. That lessened during the day because she was either sleeping or resting, but she continued to work on her iPad for an hour or more each night. That meant she got to bed between 8:00 and 9:00.

Without her puzzles, she had nothing to do after dinner. I tried to interest her in looking at her family photo books, but she really needs someone to identify all the people. That was a time when I would try to catch a little of the evening news and get my shower. The result was her going to bed shortly after dinner. Since we have started eating out some evenings, that means she gets to bed around 7:30 although she is rarely asleep when I get in bed.

Several times a few months ago, she refused to get up when I tried to wake her. Before that, she wasn’t always eager to get up, but she never refused. Since that first time, there have been several other times like that. One day she remained in bed until 5:15 in the afternoon. Then she began to wake up early on a few mornings. I am now used to her getting up early almost once a week, sometimes twice.

Until recently, she has always gotten up rather quickly in the afternoon. The exceptions occurred in the last week or ten days. The first time happened when I wanted her to get up for dinner. After a couple of efforts within 15-20 minutes, I let her rest another hour. Then she got up agreeably.

Thursday afternoon last week we had hair appointments at 3:30. She was resting, not asleep, when the sitter arrived for me to meet a friend for coffee. I returned just a few minutes before we needed to leave. She was still resting. I told her it was time for our hair appointments and fully expected her to get up easily. I was wrong. She was just like she has been in the morning. She was very relaxed but also very firm in saying she wasn’t going. I called the stylist and told her I was having trouble getting Kate up and that I might have to cancel. I gave her another ten minutes and tried again. I could see it was no use and rescheduled our appointments.

I stayed in the family room with her while she rested. An hour later she was ready to get up. She was in a good humor. I feel sure she didn’t even remember that I had tried to get her up earlier. It wasn’t long before we left for dinner at Casa Bella and had a good evening. It was as though nothing had happened at all. We both felt good.

Saturday morning she was up very early. I had just gotten up and walked into the bathroom when I heard her moving. She had gotten out of bed. I helped her to the bathroom and took advantage of the early morning and confusion to give her a shower. When we finished, I helped her dress. She wanted to lie down on the bed. Because it was so early, I was happy to tell her that would be all right. That gave me time to comb my hair, shave, and dress. She remained in bed until time for lunch.

Sunday morning, she was up before 9:00. She was unusually cheerful at breakfast. Afterwards, we spent about forty-five minutes looking at one of her family photo books. It didn’t surprise me when she got tired and rested over an hour before lunch.

She awoke early again this morning, about 7:30. I went to her and found that she seemed wide awake and in a good mood. When I told her it looked like she was ready to get up, she said, “I don’t know.” We talked a few minutes. I told her I would be happy to help her get up and dressed. She said she wanted to rest a little more. It’s my day for Rotary, and I like to have her ready for the sitter who comes at noon. We had plenty of time, so I let her continue to rest. I don’t plan to get her up until 11:00. If she wants to stay in bed, I’ll let the sitter handle it.

The only thing that’s clear is that Kate hasn’t settled into a consistent sleep pattern. I’m not sure whether the present irregularity is something that is long-lasting, or she will gravitate to something else. As Kate herself is prone to say, “We’ll see.”

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Still Having Good Times

I hope I’ve made it clear that Kate and I face more issues to deal with than at any other time since her diagnosis. I am also happy to say what I have said before. We still enjoy life and each other. This past weekend is an excellent example.

Saturday morning she was slow to get up. That meant we didn’t get to have our regular lunch at Andriana’s. Ordinarily, that would not have been a problem. We would simply have had a late lunch; however, this time I wanted to attend a virtual memorial service for a church friend who died unexpectedly. It started at 2:00, and I knew we would be unable to get home in time.

As it turned out, Kate hadn’t quite finished her lunch when it started. I had expected to have finished eating and that she would rest while I watched the service. Instead we watched it together at the kitchen table. She had no idea who our friend was, nor was she able to follow everything that was said. That didn’t keep her from finding the service to be meaningful. She was especially moved by the music and prayers. Periodically, she reached her hand out to me. When she does this, I put one hand on top of hers. She puts her other hand on mine, and I top it off with my other hand.

I have often attended services for other church friends but haven’t been able to do so for a while because they have always conflicted with my responsibilities for Kate. Before that, I had been touched by memorial services because they made me think of a time when we would have one for her. Given that, it isn’t surprising that I found both the service and Kate’s response equally touching. It was a special time for the two of us.

Thirty minutes later, we had a Zoom call with our son Kevin. That, too, was special. Most of his calls are on the phone, and often Kate has been resting or in bed for the night. The result is that she isn’t up for a conversation. To be sure, a Zoom call is a little confusing for her. Her vision problem is part of the reason. She has a hard time seeing anyone on a Zoom call. In addition, is the fact that she can’t quite comprehend that she could be seeing someone on a call. It took a while at the beginning of the call to get her to look at the computer screen and see Kevin. Even after that, she drifted away from the screen.

The good thing is that we were able to talk comfortably. Some of the time, she and I talked to each other. I felt that was a good thing in that Kevin was able to catch a glimpse of the way we relate to each other. It was very much like it would have been if he were not on the line. It was an hour of pleasure for the two of us and, hopefully, for Kevin as well.

The rest of the afternoon and evening went well, and we have added something new to our evenings. I ‘ve been reading a bedtime story just before turning out the lights. I started with The Velveteen Rabbit, but that is a little long. I learned about Love You Forever from a Twitter friend. His wife is in memory care now and still likes it. It is much shorter, and I found that Kate likes it as well. It is short enough that I added I’ve Loved You Since Forever by Hoda Kotb who wrote it for her adopted daughter. Together the two books work out just right for a bedtime story. I plan to add a few more. It’s a nice way to end the day.

Sunday was also a good day. Kate was ready to get up at 8:30. That gave me enough time to get her breakfast, spend a little quality time with her, and let her rest before lunch. The highlight came while we were still at the kitchen table after breakfast. I’ve mentioned before that she often cleans up her plate, but I don’t believe I have said much more than that. She uses her index finger to pick up the final specks of food and put them in her mouth. There are always some things she doesn’t like. She puts those on the table or her placemat.

She did something different yesterday. She likes to arrange things and often changes the arrangement of items on her bedside table and dresser. Not too long ago I reported on her food art. That was when she spent time placing her napkin, utensils, glass, and food in various places on her plate and placement. Yesterday, she did something similar.

I made cheese toast for her using Dave’s “PowerSeed” bread. As the name suggests, it is loaded with seeds, and a lot inevitably fall on the plate or placemat. I noticed her carefully studying her plate. She was arranging the fallen seeds on her plate along with her fork and one remaining bite of cheese toast. I complimented her on her artistic eye as she continued to arrange and re-arrange. She enjoys things like this, and I enjoy seeing her entertain herself. This and other simple pleasures provide us with plenty of good times.

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A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

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An Experience I Couldn’t Handle

This morning I ran into a problem with Kate that had me stymied. She had just sat up after a short rest. I sat down beside her with the intent of looking at one of her photo books. It turned out that she believed she had to be someplace about that time. She said she was supposed to meet a group of women at her house. I didn’t think much of it because I am usually able to distract her so that she forgets whatever she has imagined.

This time was different. She thought she was running late and had promised “people” she would be there. Knowing that she didn’t have any obligations, I told her I didn’t think her meeting was today but tomorrow. If she accepted that, I was confident the whole issue would have been forgotten; however, she was sure that she was right. It was about time for lunch, so I suggested we order a takeout lunch and then I would take her to her house. She was fine with that and off we went.

On the way, she forgot that we were going to pick up our lunch. She became increasingly worried about being late. I assured her we would go directly to her home after getting our lunch. When we arrived, she didn’t recognize our house as hers. I mentioned that she might be thinking of her house in Fort Worth. She was adamant that I was wrong. I said, “I do remember that you have a meeting tomorrow, but I didn’t know about the one today.” She remained sure that it was today.

I told her we had lived in the present house for twenty-three years but that we had lived in two other houses in Knoxville before that and suggested she might be thinking of one of those. I added that other people were living in both of those.

She was almost in tears as we ate our lunch. She told me that she didn’t know what to do. I told her I wanted to help her but was in the same boat. I didn’t know what to do. Then she surprised me by saying, “It’s not your fault. You are trying to help me.”

Again, she asked if I would take her home. It was only thirty minutes before the sitter was to come, and I hesitated leaving but told her I would take her. I drove her by each of our previous homes. Fortunately, one was just around the corner and the other only two miles away. She didn’t recognize either one as her home.

She began to calm down as we drove. By the time we returned home, she was fine. The sitter arrived shortly thereafter. When we saw her, I said, “Look who’s here. It’s Mary.” Kate beamed and greeted her. They began chatting, and I got my things together and went to my office. She had suffered for almost two hours, but the crisis was over. I think the only thing I did that was helpful was to convey my desire to help her. None of my specific efforts to solve her problem was successful.

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Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.

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An Active Day With a Few Surprises

Kate continues to bounce from “knowing” me to “not knowing” me. Saturday she got up late. She didn’t know me and was suspicious of me. Sunday she recognized me immediately as her husband. Yesterday she was awake early (about 7:00) and didn’t recognize me. This time, however, she seemed perfectly comfortable with me as though we were very well-acquainted.

She asked my name several times including once at breakfast. Then she asked if I were married. Before answering, I asked if she were married. She said she wasn’t. I said, “I’m not either.” I asked if she wanted to be married. She shrugged and said, “Maybe sometime.”

After breakfast, we went to the family room where I planned for us to look at one of her family photo books, but she was tired and rested for close to an hour. Then she asked what she could do. I suggested that we look at one of her photo books. She responded very differently. She seemed a little uncertain about me and expressed hardly any interest in the photo book. We completed it, but she was never engaged. It seemed like she was irritated with me, but I couldn’t think of anything I might have done to cause it. I suspect her brain had made some critical changes while she rested. She didn’t want to look at anything else and wanted to rest again. I took her to her recliner where she rested again.

I’ve served on only one church committee during the past 3-4 years. It’s the one that calls members on their birthdays. While she rested, I made my birthday calls.  When I finished, she gave me a big smile and said, “You did that well.” She was in a completely different mood.

The sitter came at noon. She and Kate were just about to eat lunch when I left for Rotary. Kate was happy and didn’t show the slightest concern about my leaving.

When I returned about 3:45, I saw the two of them standing in the family room near the door to the kitchen where Kate appeared to be looking at her ceramic cat. I quickly discovered she was rather hyper though not agitated. The sitter said she had been walking all around the house and had been doing so for quite a while before I arrived.

This has happened a couple of times before when I have been with her. She walks around looking at everything with great interest. I continued to walk with her after the sitter left. I gave her my typical commentary. We spent at least another forty-five minutes looking around the entire house before taking a seat in the family room. She wasn’t tired, and we looked at her “Big Sister” album. Nothing seemed to ring a bell with her, but she was quite interested. We spent another thirty minutes with it before going to dinner.

We went to a nearby Mexican restaurant. On the way and during the meal, she spent a lot of time thanking me for taking care of her. She was sincere, but the way she expressed her appreciation was consistent with the hyper behavior that began while the sitter was with her.

She did something else that she has done a couple of other times at restaurants including this one. She wanted me to take pictures. First, she wanted our server to take our picture. Later in the meal, she asked me to take a picture of her. She asked me to wait while she got ready and began to create a little “food art” with her meal. This was very much like something she had done at home recently.

She began by taking some of the food off her plate and carefully placing it on the table. She also moved her sunglasses, napkin, and drink to places she thought were aesthetically pleasing. When I thought she was through, she took almost all of the food and placed it back on her plate. As we left, she wanted one more picture of herself.

When we got home, I played the other half of Sound of Music that we had started a couple of nights ago. Although she was in bed, she was more engaged than I have seen her in a long time.

She was still awake when I got in bed. I moved close to her as I always do. I quickly found that she didn’t recognize me. She told me her husband would be home soon and asked me to move away from her. Despite that, she seemed rather comfortable with my being there, just not that close. Not a typical way to end our day.