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Another Morning Surprise

It was just a few days ago that I reported on the unpredictability of our mornings. That continued this today. Kate was awake, or woke up, when I got up at 5:50. I thought she might want to go to the bathroom, but she declined. I had been in the bathroom only a few minutes when she opened the door. I walked over to assist her to the toilet but found that it wasn’t the bathroom she wanted. She said, “Is she all right?” I did what I should know not to do. I said, “Who?” She gave me a dirty look. Often she says, “You know who.”, but just as often she gives me a look that communicates the same message. Fortunately, she asked “Is she all right?” several more times. That gave me a chance to say the right thing. Each time I said, “She is fine.” That seemed to provide her with momentary relief, but she continued to be concerned. During the next few minutes, she made other comments like “Are you sure she is all right?”  “I love her so much.” And “Could I see her?” I feel sure she must have been thinking about her mother but never found out.

When we got back to bed, I asked if she would like me to stay with her. Of course, the answer was yes. Unlike the other recent times when she has wanted me to stay, I hadn’t already dressed. I put on an album of very soothing music and got back in bed with her. I stayed there until just before 7:00. She was still awake but relaxed.

I knew she was likely to go to sleep and expect I wouldn’t hear from her until I woke her at 10:45. I was wrong again. I saw her on the video cam at 8:10. She was sitting up. When I reached her, she was wide awake and ready to get dressed. This was another day when she wanted me to take her “home.” That has become more frequent in the past few weeks. I told her I would. Strangely, she wasn’t persistent this time. She mentioned going home a couple of other times but seemed to have forgotten before we left for Panera. We got here about 9:15. She is just now finishing her muffin. I suspect it won’t be long before she will be ready to leave. How long depends on how well she is doing with her puzzles.

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This Morning at Panera

Kate was up this morning at 7:00 to go to the bathroom. She took a shower and then went back to bed. She was up in time for us to make a trip to Panera. As we got out of the car, she said, “Help me. Why do I do stupid things when I’m so (stumbles on the word) I said, “You’re smart.” She said, “Tell people that when I do something stupid.”

We walked in the front door, and she said, “What’s the name of this place?” I said, “Panera.” She repeated it as we were about to walk by a woman working on her laptop. Kate stopped at her table and asked, “Do you know the name of this place?” The woman nodded. Kate started to say the name but forgot it and turned to me. I told her again, and she told the woman. She said this in a childlike way but also very outgoing.

After I had gotten our drinks and her muffin, I took a seat across the table from her. She was unusually talkative. She said, “What’s your name?” I told her. Then she said, “What do people call me when I am with you?”  A short time later she asked again and then said, “Am I your nephew?” When I told her I wasn’t, she said, “You’re not my ____?” I said, “Yes.” She frowned. She brought up our relationship several other times. At least two times she was happy about our being married. Other times she wasn’t.

While there, she asked my name almost as many times as she asks Frank Sinatra’s name at Andriana’s each Sunday.

At one point, she said, “I’m learning my colors.” Then she looked at her gloves and said, “Look. They’re black.” I pointed to the lid of her cup and asked, “What color is this?” She wasn’t sure. I told her it was blue. The lid has a small plastic part on the top of the lid that slides over the hole. I pointed to it and said, “If the lid is blue, what color is this?” She hesitated a moment. Then she said, “Light blue.” I told her she was right, and she was as excited as a child might be.

Throughout our conversation she made references to growing up as though. Once she mentioned her age. I said, “How old are you?” She thought a minute and said, “Thirty or forty. Forty. I’m more mature than thirty.”

We left after she finished her muffin. We walked by a table of women who were there for a meeting of their book club. We know one of them from church and spoke to them briefly. Kate was very talkative. She would have continued talking longer if I hadn’t encouraged her to move on.

As we got in the car, she said, “What would I say if I were introducing you to someone?” I said, “This is my husband Richard.” She didn’t want to accept that I was her husband. I said, “You could say, ‘This is my very good friend, Richard.’” She wanted to drop the word “very” and just say good friend.

On the way home, she talked about our marriage and mentioned my name at least twice. She also commented on my being nice to her. She said, “You’re nice to me. You take care of me.” “You have taught me a lot of things. You’ve taught me to be polite.” Again this was said the way a little child might have said it.

When we walked into the house, she asked my name. It’s a good example of how quickly her brain works and then doesn’t work. It had been no more than two or thee minutes since she had called me Richard. Continue reading “This Morning at Panera”

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Mornings Are Unpredictable.

Predicting what Kate will be like when she wakes in the morning is challenging. Some mornings she is cheerful. Other days she seems disturbed. Recently we had experienced several especially good days in a row. That came to an end yesterday.

I went into the bedroom about 10:15 when I noticed that it looked like she might be getting up. She was awake, but I quickly recognized that it was one of those times when she didn’t know anything. Her mind seemed to be a complete blank. I spoke to her very calmly and explained that I could help her. I began to tell her a little about her mother and father and mentioned that we had some photo books I could show her. She didn’t want to get out of bed, so I brought in her “Big Sister Album.” I showed her a few pictures, but the light was too dim for her to see well as she was still lying in bed.

We went through our usual routine of her asking and my telling her my name and hers, but nothing sounded familiar. Very early I told her I was her husband. She didn’t take to that, and I said, “Just let me be your friend.” That worked.

She told me she didn’t know what to do. I suggested that she get up and go to the bathroom and then get dressed. She surprised me by taking my suggestion. She was a bit insecure as we headed to the bathroom and held my hand all the way. Once there, she depended on me to tell her what to do.

When we finished in the bathroom, we went back to the bedroom where I proceeded to help her dress. She had everything on but her shoes when she wanted to lie down. About twenty minutes later, I told her I would like to show her something that I thought she would like. She got up without a problem. She put her shoes on, and we walked to the hallway outside our bedroom where I showed her pictures of her mother and grandmother. She wasn’t as interested as usual but did enjoy seeing her mother’s photo. Things were getting better. Several times she asked, “Who are you?” I gave her my name without indicating our relationship. That seemed to suffice.

Once in the family room, I picked up the “Big Sister Album” and showed her the cover photo of her and her brother. She sat down in a chair to look at it. She took interest in the photos of the little girl but didn’t know who she was. I pointed at one in which she had taken special interest and said, “That’s you.” She said, “What’s my name?” I told her. She was elated and said, “Now I have a name?” It was a special moment of joy for both of us.

A few minutes later, the sitter arrived. I met her in the garage and explained what had been going on. She asked if she should still take her to lunch. I told her I thought that would actually be helpful for her. Then we walked into the family room. I said, “Look who’s here. Your friend Cindy, and she is going to take you to lunch.” Kate received her enthusiastically and said a loud “Yippee!” I was relieved and left for Rotary. Kate didn’t express any reservations about my leaving. She was happy, and so was I.

 

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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.

 

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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.”

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“On the Road Again”

“Real” travel is a thing of the past for Kate and me, but we occasionally take one-nighters. I am writing from Nashville where we will visit our friend, Ellen, this afternoon. She has been in memory care for almost two years. We have visited her about every 4-6 weeks since here stroke four years ago this past August except for a couple of times when she was in the hospital or rehab. Sometimes we also visit with other friends who live here. We’re just visiting Ellen on this trip. As we have done for the past 6-8 months, we stayed in a hotel overnight. That makes it a little easier than going and coming in one day. Besides that, we have a nice meal at one of several restaurants we like. It makes a nice change from our regular routine.

We got off to a good start when Kate woke up early. After a trip to the bathroom, she took a shower and returned to bed. I let her rest until 11:30 when I got her up for lunch. We had a relaxed lunch at Bluefish before leaving town and had an especially good time. Kate said something that led into a discussion about religion. It wasn’t a deep discussion, but she talked about the contribution that make religion makes in support of programs designed to help others.

We had an unusually good time at dinner. We ate at a very nice Italian restaurant. I am grateful that we can still have experiences like this. At some point, I suspect we will discontinue eating out. In the meantime, we both enjoy it and living as normal a life as we can at this stage. I gave out two of my Alzheimer’s cards, one to the hostess who seated us and another to our server.

There were only a few things that might have given clues to her diagnosis. The first was getting to our table and getting seated. She performs both tasks with great care. That’s because she is unsure of what to do. We had to go up one step to the area where our table was located. That adds an extra challenge for her. Getting into her seat presents two problems. One is knowing which chair is hers. That happens even though I pull out the chair, stand there to help her, and tell her “This is your chair.” That seems a simple thing but not to a person with dementia.  The other issue is getting into the chair. She is as cautious with that as going up and down steps.

Along with our bread, we were served a bowl of white beans in olive oil. She prefers butter with her bread, but she asked about the beans. I put a few on her bread plate. She started eating them with her fingers. She liked them. She took the bowl and used the spoon that came with them to eat them as she would a bowl of soup.

The manager stopped by our table near the end of our meal. Kate told him “We come here a lot and really liked the meal.” He looked at her a bit strangely. I suspect he wondered why he didn’t remember her. The answer was clear. This was only the second time we have had dinner there. The first time would have been almost a year ago. We have eaten there for lunch, but that would have been more than five years ago.

Kate went to bed early but not to sleep. She has been up twice this morning to go to the bathroom, once at 5:00 and once at 8:00. She is sleeping soundly as I write this post. I’ll get her up in time to make our noon reservations for lunch. We should be at Ellen’s by 2:00 and head back to Knoxville around 4:00.

For years, I left Kate for a short time to eat breakfast in the dining room or area. I remember preparing signs with large lettering telling her where I was and that I would return soon. I gave that up about a year ago when I no longer felt comfortable leaving here for even a short period of time. Now I just order breakfast from room service. It’s not quite the same, but I like to eat right after getting up. Kate likes to sleep later. With room service we both get what we want though I much prefer breakfast in the dining room to our dark hotel room. Like so many other things, this is something with which I can adapt.

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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.

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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.

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Life Can Be Frightening for People with Dementia.

I have frequently mentioned that Kate’s emotions seem to be on “high alert.” That was certainly evident the past couple of days. She was up early yesterday, and we went to Panera for an hour before going to lunch. As usual, I got her seated and set up her iPad with a puzzle for her to start while I got her drink. When I brought the drink back to her, I set it down on the table. It gave her quite a fright. She sat back in her chair and made an audible noise that was clearly noticed by the people near us. At first, I thought it was the noise on the table, but I believe it was a combination of that and the surprise when I put it down. She was probably focused on her puzzles and not aware that I had come back to the table. Whatever it was, it was an unusual response to a very ordinary event.

Our Rotary club is working on a project to place children’s books in several locations around town where children might be waiting with their parents. I am out of touch on children’s books and wanted to browse through the collection at Barnes & Noble. We stopped by after lunch. She was unusually cautious as we walked across parking lot to the store. I think her vision is the cause of her concern, but I also think her not knowing where she is or where she is going adds a measure of fear that leads to her more extreme response to things like that. She never knows what to expect. We didn’t stay long. Kate was tired and wanted to rest. As I helped her into the car, the door closed slightly. She reacted as though the door was about to hit her even though it would have hit me first.

She was glad to be home and rested for about two hours. Then we looked through a small part of one of her photo books. She was enjoying it, but she was tired and wanted to rest a little more before going to dinner. I believe that her resting is really because he is worn out. She had gotten up earlier. I’m sure that accounts for part of it, but I also think she has to work so hard to do everything that it wears her out.

We had a nice dinner at Bonefish Grill last night, but Kate was eager to get home. She asked a number of times how long it would take to get there. She didn’t waste any time getting to bed although she didn’t go to sleep right away. That has become typical. I don’t think she goes to sleep for at least an hour or two after getting in bed.

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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.