Saturday Afternoon Conversation

 

Kate and I had a pleasant day yesterday though she was somewhat confused about where she was for an extended period of time. She also experienced some delusional behavior during the afternoon. Here is a sample of some of the things she said.

As we walked into the family room after lunch, she said, “I remember being here before.”

As usual, she rested and actually went to sleep. She woke up and said, “It’s really nice to be back here.” I said, “Yes, it is.” She said, “You know I was born here, don’t you?”

A few minutes later she said, “It’s a nice place. The owner has done a lot of things.” I asked, “Do you know the owner? She said, “I think I am one of them.”

She moved from the recliner to the sofa to rest a little more. Off and on for an hour she made numerous comments. I jotted down a few of them. In each case, she seemed to be talking with someone else, not me. She often does this while sleeping at night, and sometimes responds to me if I speak to her. Yesterday’s experience was different. It was much more like something I reported on a week or so ago. She was awake but talked in a style that was more like she was dreaming. Her eyes were open and displayed nothing that would suggest she was asleep. She also talks to herself. It was more like that except that I was just a few feet away from her. What she said frequently seemed out of context as though I were hearing her side of the conversation and not the person with whom she was speaking. Here are a few examples.

“She said we could stay this night and see what we like about it.”

“I think I will close my eyes, but not for long. Then I will get up and make some friends.”

Looking up at the ceiling and laughed she said, “I can see you. . . Oh, look.” She was pointing to the trees out back.

“Wouldn’t it be nice if we could sleep here.? That would be nice.”

“I like this room.” <pause> “You know, this is bigger than I thought.”

“Yeah, I like this place.”

“Do you live here? <pause> I don’t remember her name.” (She chuckles.) “Yeah.”

“Well.” <pause> “Uh huh.” (She chuckles.)

“It looks so pretty out there. Those tall trees. I don’t know what that blue thing is. That real pretty blue. Can you see it?  <pause> Uh huh, right over there. You got it.”

“I’ll just rest here a while.” “Yeah, we’ll come back. You’ve been so nice.”

“That girl over there talked with us a little. She lives here. <pause> To live here. That would be fantastic. We’ll just have to see.”

“My goodness, when did you come in. You’re a pretty lady. <pause> Uh huh. There are a lot of people here.”

I wondered what she would be like when I got her up for dinner. She seemed normal. I didn’t notice anything during or after dinner that was like the way she was in the afternoon. It reminds me somewhat of the urinary tract infections that my dad used to get during his time in a skilled nursing facility except that she exhibits the symptoms so infrequently. This was only the second time she has been like this other than when she is sleeping at night or when I am in another room. I will be watching out for any further signs and be prepared to contact her doctor if I think it is necessary.

 

Weekly Data on the iPad

After several years during which Kate worked jigsaw puzzles on her iPad 6-8 hours a day, she has decreased her time substantially over the past few months. She has leveled out the past five weeks. Her total screen time for the past week was 3 hours and 15 minutes. Her daily average was 27 minutes, close to her 4-week average of 25.5 minutes.

The time she would have spent on her iPad has been replaced by resting and looking at photo books. The latter she usually does with me and also with the sitters. Last night was a notable exception. After dinner, she and I spent about thirty minutes looking through her “Big Sister” album that her brother made for her. Then I wanted to watch a football game, and she wanted to continue. She did that for almost forty minutes. I was pleased to see that because that would give her something she could do on her own; however, I can easily see that it might be hard to retain her interest for long since she has such difficulty recognizing the people in the photos. That includes her as well as other members of her family. On the other hand, sometimes she does recognize her mother, her father, her brother, and herself. Maybe that can sustain her for a while. I am sure both of us would like that.

Problems with Toes, Teeth, and Hair

Kate’s “hair-pulling” is an old story, but I’ve said less about her toes and teeth. They are beginning to play a more prominent role in her personal care. Let me tell you about an episode earlier this week.

It was a very good day. Kate got up to go to the bathroom around 5:30 and went to bed. She got up around 7:30, and we went to Panera shortly after 8:00. We came back to the house and relaxed until lunch. She was in a good mood. We had a nice conversation at lunch. The sitter came at 1:00. Kate received her warmly and didn’t seem disturbed in the least when I left. She was happy to see me when I returned but didn’t express any sense of relief as she has on a few occasions. We had a good experience at dinner.

While we were eating, she told me she was likely to get to bed early. I didn’t think much about it since she often says that but doesn’t get in bed. I have to admit, however, that she has been getting into bed earlier lately now that she hasn’t been occupied with her iPad. That night was one of those times.

First, she went to the bathroom. She spent 20-30 minutes “brushing” her teeth. She didn’t really brush them all that time. Much of the time she was rinsing her mouth with water and using her fingernails like dental floss. She always feels like she has food caught between her teeth. I often help her with flossing, but that doesn’t seem to work. She finally gave up and came back to go to bed. I got her nightly meds and helped her get into her night clothes.

She was disturbed about her teeth. She mentioned she hadn’t been able to get all the “bees” out. She followed that by other words that didn’t fit what she meant. She was talking about something in her teeth. She also talks the same way about things between her toes and in her hair. Sometimes she refers to them as “these little things” and says they are “smart.” She says they know when you’re trying to get them. I was able to calm her by talking to her softly and telling her I would help her. That is when she focused her attention on her toes. She wanted me to get a towel or wash cloth and get “them” out. I followed her instructions, and she felt better.

Then she got in bed and started pulling her hair. It wasn’t long before she became frustrated. She said she was tired and hadn’t been able to finish and would have to do it tomorrow. A few minutes later, she asked me to come over and pull her hair for her. I did that for a couple of minutes before reminding her she was going to rest and work on her hair in the morning. She said I was right that she needed the rest and thanked me for helping her. She was fine after that; however, I don’t expect this to be our last episode with “them.”

A Rare Experience

Kate and I have been married fifty-six years, and I can’t recall a time when we have sat down to breakfast together except when traveling or the few occasions when she has attended a YMCA breakfast with me. The reason is simple. I like breakfast, and she doesn’t. In addition, I have always gotten up earlier than she does. When she was working, she used to have some juice and yogurt just before leaving the house. She continued this after retiring until we started going to Panera for a muffin. Since she started sleeping late almost a year and a half ago, she hasn’t been eating breakfast regularly because we go directly to lunch.

I am not expecting that routine to change, but yesterday morning was quite different. She wanted to get up to go to the bathroom at 5:30. She was back in bed in twenty minutes. I stayed up and got ready for the day. As I was about to dish up my scrambled eggs, I looked at the video cam and saw that she was about to get out of bed. I went to the bedroom and found that she was wide awake and quite cheerful. I assumed she wanted to go to the bathroom again, but she said, “Do we have anything to eat?” I told her I had some scrambled eggs and some granola but no milk. She wanted the eggs. That was quite a surprise, I can’t remember the last time she had scrambled eggs. The only times I recall her having eggs at all is when we have been out for breakfast, and then it is usually pastries, pancakes or Eggs Benedict.

I walked her to the kitchen, got out two plates, and split the eggs between us. She enjoyed every bite and chatted too. I didn’t notice any of her usual grogginess. Having given her half of my breakfast, I needed a small dry serving of granola, but it was a special occasion. It’s a rare day when we have breakfast together.

Dreams, Delusions and Hallucinations

Here’s another post in which I will never be able to capture the details. Let me start and see where it goes but understand you will not be getting the whole story.

Kate has talked in her sleep off and on during her life with Alzheimer’s. In the early years, the focus was almost always her teaching and library career. Most, if not all these experiences, involved her speaking to students. She was very deliberate in what she was telling them. Her memories of those days faded away long ago, but she continued her talking just in different situations.

Yesterday morning at 3:00 she had another “dream” experience similar to one she had a week or two ago. She seemed wide awake and very clear-headed. She wanted to go to the bathroom. On the way and back to bed, she looked and sounded normal but she appeared to be “dreaming while awake.” That’s hard to describe, but she talked as though we were someplace away from home. She mentioned other people. Then she said, “What do we have planned for tonight?” I told her we were going to have dinner at Casa Bella. She asked if we were going with anybody. I told her we would go by ourselves and sit with the same people with whom we usually sit. She was pleased we were going by ourselves although I thought she missed the fact that we would sit with others.

I thought that was it, but after we were in bed we spent the next fifteen minutes or so repeating the same conversation. Then we both went back to sleep. This kind of thing has occurred several times in the past. I think she has a dream about some obligation and is concerned about it. In a couple of instances, it was clear that she thought she had an appointment and needed to get ready. Most often, she just asks the question and the repeats it a number of times without any expression of anxiety.

About 10:15, I noticed that she was sitting up in bed. I went back to see if she wanted to go to the bathroom. She smiled as I got near the bed. It looked like everything was fine. We chatted a few minutes. She said, “Where am I?” When I told her we were at home, she wasn’t satisfied with the answer. She wanted to go home. At first, I told her she was at home, but that didn’t sink in.

I tried to divert her attention by taking her to the family room. She enjoyed seeing all things she usually admires, but she still wanted to go home. She was also tired. I led her back to the bed. She didn’t want me to leave her although she didn’t remember who I was. I brought my laptop and sat with her for another thirty minutes before suggesting that we go to lunch. By that time, she had forgotten about going home, and she didn’t say anything more the rest of the day.

When we got home, she had a brief hallucination as we got out of the car. She pointed to something leaning against the side of the garage. She thought it was a girl. There wasn’t anything I could see that might cause her to think that, but I just went along.

She had another unusual experience after she was in bed. She pointed to the ceiling and mentioned something about the “people over there.” I was never able to make much sense out of what she was saying. Then she said she wanted me to help her understand what was going on. I told her I would be glad to and asked what she needed to know. She pointed around the room and said something I never understood. It was another sign of her aphasia. She used a word that had nothing to do with whatever she meant. I think she was talking about all the objects in the room, but I was never clear. Periodically, she would say, “See them over there.” A couple of times, she mentioned animals in the room.

We got through the night without any special “happenings.” She was up early to go to the bathroom and was in a cheerful mood. She has been back in bed for almost two hours. I noticed on the video cam that she is moving around in bed. I’ll check on her. It’s about time to get her up for lunch. I wonder what’s up for today. Clearly, her brain is making changes. I never know where it will lead.

An Example of Kate’s Self-Awareness

Over the past few days, Kate has snapped at me several times. As in the past, she quickly apologized with tears in her eyes and said, “I shouldn’t have said that.” I’ve been struck by her awareness that she has spoken to me in a way she hasn’t done before Alzheimer’s entered the picture. Two nights ago, I was even more surprised.

We had just finished a very pleasant dinner at Bonefish Grill. I started the car, and she said, “May I tell you something?” Her tone of voice made me think she was going to say something nice about my caring for her as she often does. I was surprised when she said, “I know I’ve been hard to deal with lately, and I want you to know I’m sorry.” I was both touched and stunned. Here she is trying to adapt to the changes taking place in her brain, and she feels bad about the way she has treated me. Apart from that, I was amazed that she said this “out of the blue.” I think it had been more than twenty-four hours since she had last snapped at me. That tells me this is something that really disturbed her. That matches her other concerns related to not knowing “anything.” To me it is a remarkable example of her kind heart and self-awareness. It also increases my desire to see that she gets the best care I can give her.

Trying to Get Back to “Normal”

About 10:45 yesterday morning, I put on some music to wake Kate. Ten minutes later, I approached her bed. She looked up at me and smiled. I knew it would be a different day. I didn’t test her, but she appeared to recognize me. She was still very relaxed and not ready to get up. I chatted with her for another few minutes before telling her I would like to take her to lunch.

She still didn’t want to get up, but finally, with a little encouragement, she did. It was a shower day, and she wasn’t enthusiastic about that. Again, she delayed a little but agreed it was good to get one. Then it was back to bed for another twenty minutes before I got her dressed.

It was a morning when she wanted to exercise her independence and let me know it rather sternly when I tried to help. This is a tough situation for her because she always ends up recognizing that she needs help even though she wants to do everything for herself. I really felt for her. I am always struck by her self-awareness when she responds so harshly to me. She apologized several times before going to lunch. I may say more in another post, but I want to emphasize something I have said before. I don’t interpret her irritation with me to be a direct symptom of her Alzheimer’s. It appears to be result of what is a symptom – an inability to understand what I want her to do and/or my intentions. In her confusion, she strikes back in defense then intuitively recognizes that is not the way she has traditionally acted or wants to act.

Our walk through the family room was not as long as it often is, but she did react positively to the usual things that appeal to her. It was the drive to lunch with music she enjoyed that brought her back.

We didn’t get to the restaurant until 12:45. They were “slammed.” As a result, we didn’t get home until almost 3:00. She was ready to rest and did so for the next two hours. I was on a phone call with my brother fifty minutes of that time. She appeared to sleep a while, but she was awake most of the time. She often mentions the trees outback, especially the tops of the trees she sees through the skylights. She didn’t talk at all yesterday. A half hour before we left for dinner, I thought about looking at some of our old photos, but that didn’t seem to appeal to her.

Throughout the day, she was confused about a variety of things. Most of them were the usual ones I have mentioned before. I had a hard time getting her to understand about using soap when she showered. When I attempted to show her by putting the soap on her, she said, “Don’t touch me.” I think that was a moment when she didn’t recognize who I was. She is also beginning to get confused about the use of her toothbrush and toothpaste. At dinner, I brought her an extra napkin. She didn’t know what to do with it. I explained it was just an extra one she could use if she needed it. (She always does.) She said, “Where should I put it?” I showed her a place on the table to the left of her fork. She couldn’t understand what I meant. I finally placed it for her. She still looked confused.

The best part of the day, and it was really good, came after we got home. I turned on the TV to a YouTube video of a concert version of My Fair Lady with Kiri Te Kanawa and Jeremy Irons. I have played this several times before, but she was never as taken with it as she was last night. She sat in her chair and devoted her attention to it for almost an hour. That is unusual. It is more typical for her to lie down in bed and listen without watching. When the video was over, I got her ready for bed. I had intended to stay up a little longer as I usually do, but she wanted me to come to bed as well.

Ending the day on a high note is one of the most predictable times of the day. The morning continues to be the most unpredictable; overall, however, we still have more happy times than sad ones. I am grateful.

A Day of Ups and Downs

As I said in my previous post, Kate was resting peacefully yesterday morning though not asleep. When I felt it was time to get her up for lunch, I encountered what appeared to be a combination of anxiety and depression. She didn’t want to get up. I quickly sensed that this wasn’t something I had faced before. She seemed more frightened. It was also one of those times when she wasn’t sure who I was and wasn’t as trusting as usual.

I decided not to worry about getting her up immediately but to see if I could comfort her as I have done in the past. I brought in the photo of her mother from the hallway. She looked at it but didn’t say anything nor did she express any interest in seeing it. I put it back and brought in the “Big Sister” album with the photo of her and her brother on the cover. She was mildly interested. She did recognize herself, but it didn’t do a thing to change her mood or readiness to get up.

I said, “You look frightened. Are you?” She nodded her agreement. I said, “I would like to help you if I can.” She said, “I know you want to help, but there isn’t anything you can do.” I asked if she could tell me about it. She couldn’t. I continued to talk with her very gently focusing on making her comfortable with me. That paid off.

After what was probably fifteen minutes, I asked if I could take her to lunch. She said, “I don’t know.” Then I suggested that she might feel better if she got dressed and we went to lunch. She didn’t buy into that immediately, but I assured her that she would feel better if she got up. She finally agreed.

When she got to the family room, she started to recover. She took an even longer time looking at the plants on the patio and the trees behind our house. She also perked up when she saw her ceramic cat just before entering the kitchen. All of this stimulation took her mind off of her fright. It looked like she was fine. Then as we stepped out of the house into the garage, she became frightened again. She didn’t know why.

We got into the car, and I put on some music that I hoped would help to calm her. That worked. By the time we reached the restaurant, she was all right. We encountered only one issue during lunch. She asked my name. I told her, and then she became very sad about not remembering it. Then she asked her name. When I told her, she tried several times to repeat it, but was only able to do it with great difficulty. The rest of our lunch went well, and we got back to the house without any problems.

As she often does, she asked what she could do. I gave her the usual options. She decided to look at a photo book. I decided to let her look through it by herself. I read the introductory information. Before I finished, she was tired and wanted to rest.

She rested about two hours before I asked if she would like to look at some of our old 35 mm slides that I had converted to digital a few years ago. She usually declines. This time she surprised me. I got my laptop and sat down beside her. I started with photos from the Fall of 1968 when our daughter was born. She enjoyed seeing them. It had been years since we had looked at them. We spent almost an hour doing that before going to dinner. It was a highlight of the day.

As we drove home from dinner, she became concerned about “the other people” who would be “there.” I explained that we were going to our house and that no one else would be there. I told her it would be a time for us to relax without any obligations. That seemed to relieve her. At least she didn’t say anything more about it.

At home, she surprised me again by working on her jigsaw puzzles for over an hour without much help. After that she was tired and wanted to quit. We adjourned to the bedroom, and she was in bed around 8:00. It is almost 10:00 this morning, and she hasn’t gotten up. I’ll let her sleep until 10:45 if she doesn’t wake sooner. I am hoping for a better day.

Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

Unusual Behaviors

I’m exercising an extra measure of discipline this morning. I just finished my forty-minute walk around the house while listening to All the Light We Cannot See. I am getting to the end of the book now and was having one of those “driveway moments” they sometimes talk about on NPR. I was tempted to continue walking just so I could hear what happens next. Then I should take advantage of a little extra time to upload a post before my self-imposed deadline of 9:00. I haven’t been very good at that lately.

When I wrote the message on my “Alzheimer’s cards” I carry in my wallet, I settled on a message that says, “My wife has Alzheimer’s. Sometimes she may say or do something unusual. Your patience and kindness are appreciated.” I struggled with the word “unusual.” I wasn’t sure it communicated the right message. As time has passed, I feel that works pretty well. Kate often says or does something unusual whether we are at home or out. Here are a few things I have observed recently.

Putting saliva on her fingers and wiping it on her face. This habit is paired with her hair pulling that begins shortly after she lies down to rest. She catches a few strands of hair at her scalp and gently pulls them upward until she reaches the ends and lets them fall. She is meticulous and proud of the way she does this moving from one side of her head to the other.

I can’t say when wiping her face with saliva began. I have only noticed it in the past week or two. It seems to occur after she finishes with her hair. So far I haven’t seen her do either of these things in public. At least once she has told me to watch what she is doing as though she is proud of doing something beneficial to her skin. The good thing is that washes her face and arms when she washes her hands and/or teeth.

Another one I have mentioned before is rubbing her fingers between each of her toes after she showers and before I put on her socks in the morning. She often says, “I’m getting them.” Sometimes she holds her finger out to me and says, “See.” I’ve never been able to see anything.

While these things are only done at home, they are consistent with other behaviors that are more public. The other night at Chalupas she asked me for a cup. I wondered why she was asking and pointed out that she had a cup that was full of Dr. Pepper. She scooped up a spoonful of her Pollo Fundido (Chicken and rice topped with cheese) and dropped it in her cup. When she finished her drink, she noticed the residue of food at the bottom of her cup and called my attention to it. She hadn’t remembered putting it there. I like to think that she might not have done that if we had been with other people, but I’m not sure.

Last night she deliberately put a small piece of her bread on the table. It was mostly crust which she doesn’t like. Later in the meal, she suggested it was almost dead. I said, “Do you think I should put it out of its misery?” She said, “It’s up to you.” I picked it up and put it on a plate. Then she started looking at small specks of other debris from her plate. She saw one black spot and crushed it with her finger. Looking at small spots like this is very common, and she seems to treat them as though they are alive.