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More Delusions/Hallucinations

Over the past week or two, Kate has experienced more “delusions” than in the past. I’m not actually sure that is the right word. Most often they involve things like a belief that we are somewhere other than our home, that there are other people in the house, and that she sees people or things when nothing is there. When I noticed that she was about to get up yesterday morning, I went to the bedroom. As I approached the bed, she said, “Don’t touch me.” I thought this might be a time when she didn’t recognize me at all, but then she added, “I’ve got a cold.”

As she got out of bed, she insisted that she do it herself without my help. She didn’t want to hold my hand on the way to the bathroom. Once there she continued to be careful about my not touching her because of her cold. What was especially unusual about this was that she has never before shown that kind of concern about spreading her germs to me. I have always been the one to be concerned about passing along a cold to her or her passing along one to me. I didn’t observe any signs of a cold. I didn’t know if she really had one or if she had a dream in which she had a cold.

After finishing in the bathroom, she went back to bed. It was 8:00. She had plenty of time to get back to sleep before getting up for lunch. When I went back to wake her at 10:45, I found that she was awake. This time she didn’t say anything about having a cold. Neither did I see any signs of a cold during the time she was dressing or as we drove to lunch. I didn’t mention anything a cold during lunch, but I did ask if she was feeling well. She said she was fine and never reported any health problem the rest of the day. I am left to believe that her earlier mention of having a cold must have been the result of a dream.

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Three Days in a Row with More Confusion Than Usual

After getting up early and taking a shower, Kate went back to bed yesterday morning. As she had done the day before, she got back in bed after her shower and didn’t want to get up. I was going to my Rotary meeting, and Kevin was taking Kate to lunch as he has done on other visits.

Although she seemed to recognize me when she got up the first time, she didn’t when I tried to get her up later. She asked who I was, and I told her my name and that I was her husband. She didn’t believe me. As I usually do, I backed away from trying to convince her. I decided to focus on getting her dressed. We immediately ran into a problem. She was still undressed following her shower and was uneasy about letting someone she didn’t know help her with her clothes. I didn’t push but continued to talk with her. She asked about her clothes several times. I told her I had them right there on the bed and would help her get dressed. She finally consented. As she was dressing, I told her that Kevin was here and would be taking her to lunch. She didn’t know who Kevin was. I explained, but I wasn’t successful. I told her she would recognize him when she saw him.

As it turned out, I was right. At least she acted as though she “knew” him. That didn’t mean she remembered his name or that he was her son. She did, however, greet him happily. Then for a few minutes she gave her attention to the flowers inside and outside. She followed that by asking his name. Then she commented on his voice. She said, “You sound like a nice guy. I don’t know why I say that. I just sense it.”

We went into the kitchen where I had put out her morning meds. While she was taking them, she asked again about Kevin. I told her that he was our son. She found that hard to believe and asked Kevin. He confirmed what I had said, but she was still skeptical.

When we got to my office where I was meeting a colleague, Marianne, I told Kate I would be going to Rotary and she would be going to lunch with Kevin. She said, “Why don’t you go along with us?” I told her I could have invited her to attend my Rotary meeting but thought she might not enjoy it. She agreed, but she still looked like I was deserting her.

After lunch, we met back at the office and then went home where she rested until it was time to take Kevin to the airport for his flight home. From there we went directly to dinner. Once we were home, she wanted to rest again. She rested until 8:00 when I suggested we get ready for bed. I got the impression that her memory of me as her husband was “on again” “off again” for the rest of the evening, but she wasn’t like she was during the morning. She clearly was quite comfortable with me and showed complete trust in me though she had been suspicious in the morning. I don’t think I observed anything that I hadn’t seen before; however, the depth of her confusion seemed greater than I have noticed before. I think she was quite confused much of the day but still functioning pretty well. She even surprised me on the way home from dinner when she made an observation about the two of us. She said, “When you say silly things, I don’t get mad at you. I know you are just trying to be funny.” She may not know my name or our relationship, but she has a keen insight into my personality. She “knows” me.

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A Good Day But a Lot of Confusion

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

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

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

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

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

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

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

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

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

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

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

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An Early and Cheerful Start to an Emotional Day

Kate got up on her own about 9:30 yesterday morning. She didn’t seem groggy at all and was quite cheerful. I took advantage of the occasion and got her to shower. That’s not something she usually wants to do, but she always likes it once she is under the water. As I helped her dry off, I joked that this must be like having her own personal spa service at home. She laughed and said, “That’s something I like about you. You have a sense of humor.”

Her good humor did not indicate a lack of confusion. As she was putting on her shoes, she pointed to the carpet and said something about her mother. I didn’t know what she was talking about, but it sounded like she saw her mother on the floor.  It turned out there was a white spec on the dark blue carpet that bothered her. I think this was one of those instances in which she just couldn’t think of the correct word. How she made a connection to her mother is a mystery.

Because she was up earlier than usual, we had a little time before we needed to leave for lunch. I decided to make use of the time by showing her pictures of her family. We began in the hallway outside our bedroom where we stopped to look at those of her grandmother and mother. I tell her the same stories each time. She is always surprised and interested. She almost always guesses that the picture of her mother is her own photo. That is not something limited to this particular picture but others that we see in her various family photo books.

As I talked about her mother, she became very emotional. She was, as usual, struck by her mother’s smile and her eyes. Despite her interest, I gave her more information than she could take in and said she thought we should move on. Then she did something I have not seen her do before. She said goodbye, touched her fingers to her lips, and placed them on her mother’s face. Her feelings for her mother are even more intense now than ever. I got the sense that she thought we were in her family’s home in Fort Worth. I guess she was thinking that we were leaving to return to Knoxville. She wanted to take the picture with us. I was about to tell her she could when she said, “Maybe this is a better place for it.” I agreed.

We still had another thirty minutes before we needed to leave, so I brought her to the family room where we looked at a photo of our daughter’s twins when they were six or seven. I suggested we sit on the sofa where I could show her the photo book of her mother’s family. She was immediately taken by it and was very emotional as I told her the names and read her the text that accompanied the photos. We didn’t get further than a few pages because she was getting too much information, and it was close to time for us to leave. She said something she has said a number of times before. As I was reading the text, she asked me to write this down so that she could have it for the album that she wants to make. It always seems strange to me that she wants me to write it down when it is already so nicely summarized in her books. Of course, I am looking at this as someone who does not have dementia.

Before leaving for lunch, she thanked me for bringing her here and commented on the many experiences we had had in this place. I am making this sound more straightforward than it really was. She couldn’t find the words she wanted. I guessed what she was trying to say, and she agreed with my interpretation.

Her emotions were obvious in several other ways at the house and the restaurant. I gave her a little mouthwash but didn’t tell her not to swallow it. I think this was a first for me, and, usually, she is insulted when I tell her. This time she swallowed it. Fortunately, it was not Listerine. She doesn’t like that and would have reacted strongly. This was a Colgate product that does not contain alcohol, so it didn’t bother her at all. When she swallowed it, I reflexively told her she shouldn’t do that. She responded emotionally with tears. This time because she had done something wrong. As with other things, she is also mindful of and very sensitive about doing the right thing. I think that is what is behind all of her questions when we are eating out. She doesn’t like to make mistakes but knows she makes a lot of them.

When we arrived at the restaurant, our server rushed over to give her a big hug. Kate was overcome with emotion and was teary all the way to the table. As we talked during our meal and in the car on the way home, she had teary moments as we talked about our marriage and children. In keeping with her growing insecurity, she expresses her expressions of appreciation for helping her. There is no question but what she recognizes she needs help and that I am the primary person who provides it.

She surprised me after lunch. She didn’t say anything about wanting to rest. She sat down with her iPad and started working jigsaw puzzles. She did need occasional help, but she worked three and a half hours without a break. She still showed no sign of wanting to rest. It was a high energy day which is very unusual. The battery on her iPad was exhausted before time for bed.

She was very talkative during and after dinner although I could not understand everything she said. In fact, I understood very little. When we adjourned to our bedroom for the day, she worked on her iPad, but her mind was on something else. The night before and last night at dinner it was clear that she thought we were having company at the house. It sounded like a big event. She had asked me if I had taken any pictures of the people the night before. I told her I would get them later. Last night she wanted to know if I had the camera ready. After a while, she asked if I had taken a picture of her. I told her I hadn’t but would be glad to do that “right now.” I picked up my phone and took it.

The one thing I could understand was her strong sense of insecurity as expressed in her exaggerated words of appreciation for me. I don’t ever recall a day in which she so frequently thanked me and expressed her feelings for me. At no time during the day did she act in the least way irritated with me.

All of her behaviors are indicative of how much she has changed over the past few weeks or months. Despite recognizing this change, I felt good about the day. She was unusually happy, and I was able to deal with her moments of insecurity. I find that I tend to be sad as I look to the future. “In the moment” I almost always feel good. The hardest thing for me to deal with is her moments of anxiety. Fortunately, they don’t occur often and are short-lived.

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Hallucinations and Delusions

Hallucinations and delusions are common among people with dementia. Kate is no exception, but I often find it difficult to distinguish between the two. I know that hallucinations are sensual experiences that feel real but are not. Delusions are false beliefs that occur when there is no evidence that they are correct.

Applying those general definitions to specific incidents is not always easy. For example, Kate often believes she is some other place when she is home. Most frequently, that involves her believing our house is some type of lodging like a hotel and that there are other people staying here. When she wakes up, she often says, “I want to get out of here.” I think of this as a delusion because it is a false belief. On the other hand, that must occur because she has had a sensual experience that she doesn’t recognize as our own house. When I point out a few things like our backyard (that is, giving her evidence that is to demonstrate it is our house), she realizes she is really at home. That sounds more like it was an hallucination.

As I was about to get out of bed yesterday morning, she asked, “What do I have to do today?” I told her it was a day without any special obligations, that she could relax and do what she wanted to do. Then she said something about having to give a talk someplace. I told her I didn’t know about anything like that and suggested she may have had a dream. She reacted quickly and strongly saying, “It was not a dream.” I didn’t pursue it further. After I was dressed and about to go to the kitchen for breakfast, she brought up the subject again. This time I knew what not to say. Again, I told her it was a day when she could relax. When she asked about her “talk,” I said, “I think that’s tomorrow. You don’t have to worry about it right now.” She was relieved.

Most of her hallucinations/delusions are like those I just mentioned; however, this past Tuesday afternoon she (and I) had an experience that was a first. She had been resting on the sofa of our family room for about two hours while I was seated across from her. She fell asleep for a short time. Then she awoke and saw me. She had a big smile on her face and greeted me like someone she knew, but not as her husband. She began a conversation that made me think she was not really awake but dreaming.

I went over and sat beside her. She said, “Are you from around here?” I told her I was. Then she said, “Well, how familiar are you with what is going on?” I told her I wasn’t familiar at all. She said, “Oh, then I better start from the beginning and tell you about myself.” That led to a thirty-minute conversation during which she did most of the talking. Her aphasia was quite evident. She struggled for just the right words and how to tell her story most clearly. She would start out and then get confused. Then she would start over. I recorded a short portion that occurred about fifteen minutes after our conversation began. I transcribed the section below as she tried to explain “things” to me.

Kate: What is interesting to me is how quickly we can get in and out here. <pause, reaching for the words> Yeah, I can’t just get over with what you can do with <pause, reaching for the words> uh, with, well, you know with what. (She laughed.)

Richard: Well, you seem very happy. You don’t seem like you have a problem.

Kate:  I don’t have a real problem, but I do get discouraged sometimes. Just because. Let me see. <pause, reaching for the words> All right. <pause, reaching for the words>

Richard: You get discouraged? For what?

Kate: Oh . . . Oh. <pause, reaching for the words> just little things, you know. and the big things I take pretty well. And, uh, there’s a guy that I had never met before, but he’s a nice guy. Are you familiar with around here?

Richard: A little bit.

Kate: Well, OK. Um. I’m from Fort Worth, Texas, and um. <pause> And my family was religious, and uh, but anyway, I, I, uh grew up in the church. So <pause>, reaching for the words> But, ya’ know, all of these things have changed.

Richard: In what way?

Kate: (She laughed and called me for help.) Richard. <pause> Richard! <pause> Richard!! <longer pause> Richard!!!

Richard: Who are you looking for?

Kate: That’s my . . . <pause>

Richard: Who is that? <no response> You were about to say?

Kate: He’s with us.

Richard: Richard?

Kate: With this church.

Richard: Richard is with the church?

Kate: Who?

Richard: You’re saying somebody is with the church.

Kate: Oh, yeah.

Richard: Who is that?

Kate: Oh, a lot. <pause> (She laughed.) We do. This is a little hard for get around here, but, uh. Anyway, let me start with me. I grew up in this right <pause> this big area.

Richard: You grew up around here.

Kate: And, uh . . . (She laughed). There were in the area in which all my friends grew up with we all went to school. You know some get out way . . .

I think that should give you an idea of the conversation. She called for me again, and I told her I would go get “him.” When I walked back into the room, I greeted her as though I had not been in the room with her moments before, but I didn’t give her my name or tell her I am her husband. She seemed to recognize me, and I suggested we go to dinner.

I’m not clear on whether she was having an hallucination or a delusion or both. Maybe it’s best just to say she was confused. That is clear, but what prompted it? That’s another thing I’ll never know.

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A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

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Does she know what lies ahead?

I don’t think I am alone among caregivers when I wonder exactly what Kate knows. By now I realize that she knows very little when it comes to her rational thought/abilities. Many times I have mentioned how often she can’t remember my name or our relationship. I take comfort in the fact that her intuitive thought/abilities are still working well. Through them she almost always recognizes me as someone very familiar and trusting.

For over a year, I have also realized that she no longer remembers that she has Alzheimer’s. At first, I wondered if I should tell her and, on one occasion, I did remind her. She hadn’t remembered, but she quickly forgot, and I haven’t said anything since. I haven’t see anything to be gained by it.

She has always recognized that she has problems and needs my help. It was only a year ago in July that she began to experience anxiety or panic over moments when she didn’t seem to know anything – where she was, who she is, who she was with. Within the past few weeks, I have sensed that she might believe that her problems were of a more serious nature, not just a periodic lapse of memory. Over the past week or two, she has said and done things that lead me to think that she knows she is declining and is afraid of what lies ahead.

Sometime in the past day and again today at lunch I felt strongly that she recognizes that through her intuitive thought. She was awake when I went to get her up for lunch. She didn’t seem frightened, but she was uneasy and insecure. She was especially eager for me to help her with everything. That follows signs of increasing insecurity and appreciation for my helping her during recent weeks.

At lunch, I said something about her mother and father. She wanted to know their names and something about them. When I said that her father was one of eight children, she said, “I know why.” I said, “Why?” She said, “Because in those days, they needed more children.” I was surprised that she came up with this and said, “You know, you are smart.” She beamed and said, “I think so too.” It was as though she was relieved to have me say that. Off and on she has said she is smart, but that has been more frequent recently. I have felt she was trying to convince herself that is true. It would be easy to think she is not given how poor her memory is and how little she is able to do.

During our conversation, she stopped and said, “I want to tell you something.” She looked very serious. I leaned closer to her. She said, “I know that you will always take care of me.” I said, “I will. You can count on that.” Her eyes filled with tears, and she said, “Thank you. I know you will.” I felt we were thinking similar thoughts about the future. There is no way I can be sure, but the look on her face made me think that.

I told her I loved her, and she said the same about me. We began to talk about our marriage, and I mentioned our children. She said, “Who are they?” I told her and she asked if I had a picture. I pulled out my phone and showed her pictures of Jesse and Kevin. She said, “Do you think they love us?” I said, “I know they do?” She choked back her tears.

In a few minutes, we got up to leave. She started whimpering and was loud enough that I saw people at two different tables look up. On the way to the exit she continued to cry softly. We stopped right there in the dining room and hugged for a moment and then went on.

I don’t know precisely what she is thinking, but she seems very concerned and doesn’t see a happy ending. I am glad she still knows that I will be with her all the way.

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A Touching Morning Conversation

I am never sure what Kate will be like when she wakes in the morning. She is usually in a good humor, but she is often confused and sometimes irritable. Today was an interesting mix of tenderness and confusion. The prelude to a touching conversation occurred when I noticed on the video cam that she was sitting up in bed. I went to the bedroom. I found that she wanted to go to the bathroom, but she didn’t want my help. I think it was one of those rare times when she didn’t recognize me at all. I pointed out the bathroom and left to watch on the video. She made her way to the bathroom. I went back when I saw her come out. After she was back in bed, I told her I would be in the kitchen and to call me if she needed anything. She asked my name. I told her, and she tried to repeat it. We went through this routine several times. Before I left, I said, “If you don’t remember my name, just say ‘Hey.’”

An hour later, I heard a very soft “Hello.” Before I reached her, I heard it again. By that time, I was at the door to the bedroom and said, “Did I hear you calling for me?” She nodded. She smiled, and I thought this was one of those mornings when she clearly knew our relationship. She said, “I love you.” I took that as confirmation of my suspicion.

I was wrong. I sat down on the bed beside her. She said, “I want to thank you for taking such good care of me.” I said, “That’s because I love you.” She said, “I love you.” She paused a moment and said, “What’s your name?” Before I could say anything, she recognized how strange that sounded. She laughed and said, “I know that sounds funny.”

That began a 15-20 minute conversation a portion of which I recorded on my phone. The gist of the conversation was a continuation of her expression of appreciation for my caring for her as well as how she feels about me. That continued to be mixed with asking my name. She also referred to me as her daddy. Once or twice she asked if I were. The first time I hesitated and then told her I wasn’t. She was disappointed. I said, “You can think of me as your daddy.” She liked that and continued to call me her daddy, but she also talked about loving me in a way that was more like she thought of me as her husband. Of all the things she said, I was struck by one particular thing. She looked teary and said, “I don’t know what’s wrong with me, but I know you will take care of me.” I assured her that I would.

I can’t tell you how many times I have wondered to what extent she grasps her problem. I am positive she doesn’t remember that she has Alzheimer’s, but she frequently expresses a concern about herself. She knows that something is wrong. Her comment this morning suggests to me that she thinks it’s something serious.

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This Morning’s Experience of “Knowing” but “Not Knowing”

Some time ago (February 18, 2018) I wrote a post entitled “What does it mean to know someone?” The answer to that question is much more complex than it sounds. I see that all the time with Kate. Like other care partners, I am very sensitive to those times when Kate knows or seems not to know me. I tend to put her level of knowing in four categories.

  1. She knows me in all the traditional ways a wife knows her husband. She knows my name, that I am her husband, and has a feeling of affection/kinship for me.
  2. She knows either my name or that I am her husband (usually the latter) and has a feeling of affection/kinship for me.
  3. She knows neither my name nor that I am her husband, but has a feeling that I am someone familiar and whom she trusts.
  4. She has no idea who I am.

I can’t put an accurate estimate on the frequency with which she experiences these categories. I do know that Category 4 is the least frequent by far. There have only been a handful of times in which she has had no idea who I am. Category 1 occurs infrequently but much more than Category 4.

That leaves the other two categories that occur most often. I’m not sure, but I think we are at a time when Category 3 is, or is becoming, the most common. Most of the time she knows me as someone familiar and whom she trusts.

I know there must be caregivers who find it disturbing when their loved ones no longer remember their names or relationships, but I find that leaves me with the most important connection that we have and have always had. Like most other couples we were attracted to each other from our first date, perhaps even before or there might not have been a first date. After all our experiences and changes in our lives, this sense remains. I am optimistic that it will continue though I recognize that, too, may give way to this disease called Alzheimer’s. In the meantime, I am going to relish moments like this morning. In the scheme of things, it wasn’t significant, but it meant something to me.

I was just finishing breakfast when I noticed on the video cam that Kate was about to get up to go to the bathroom. I went to the bedroom and could tell this was a morning when she was confused. Unlike other times, she seemed very normal in terms of her emotion. She showed no signs of anxiety or fear though I feel sure she was feeling anxiety. In a very natural tone of voice she said, “What’s going on?” I said, “Well, you just woke up, and you are in your own house. That’s your back yard that you like to look out on each morning.” She said she recognized it.

Then she said, “What now?” I said, “I think you were about to get up to go to the bathroom.” She said, “I think I was. Where is it?” I said, “Let me show you.” I took her hand. She held it all the way. That’s not something she always does. As we walked, she said, “Who are you?” I said, “I am Richard, and I am your husband.” She didn’t act surprised nor elated. She just accepted that as a label for me.

After using the toilet and washing her hands, she said, “I wish I could just be with you and nobody else.” I said, “You are. This is our house, and there’s nobody else her but us.” She seemed to like that but didn’t express any special emotion at all. She said, “What now?” I said, “You usually like to go back to bed for a while.” She said that is what she wanted to do. She said, “Who are you?” I told her again and noticed that she seemed just a bit uneasy and asked, “Would you like for me to stay in here with you?” She did, and I told her I would get my laptop and come back to the room. She said, “Don’t leave me. Take me with you.” I told her I would; however, by the time we reached the end of the bed, she had forgotten and walked toward her side of the bed.

After she was in bed, I asked if she would like me to stay in the room with her. She did. I remained with her. She fell asleep. Thirty minutes later I came back to the kitchen (my office) to write this post.

This was one of those times she didn’t know my name or our relationship, but she had a good feeling about me and trusted me. That is what is most important to me. It reinforces my desire to keep her secure and happy, and she almost always is.