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This Morning’s Surprise

I was asleep but felt Kate move. When I looked, she was seated on the edge of the bed. The clock read 4:52. I asked if she wanted to go to the bathroom and that I would help her. She said she didn’t. She stood up. I walked around to her and asked where she was going. She didn’t answer. I reached out my hand and said I would help her. She signaled with her hand to go in front of her. Still thinking she might want the bathroom, I turned in that direction. She wanted to leave the bedroom.

She led me down the hall way to the other bedrooms. She walked through each one and looked in the closets as well as things on dressers and tables. Two of the rooms have an adjoining bath. She went from the hallway into the first one, through the bath and into the next bedroom. She turned left into the hallway. When she came to the door of the door of the first bedroom, she entered it again. She went back through the bathroom into the second bedroom. Then she went into the family room and on to the kitchen turning lights on in each room.

When we stopped in the kitchen, I told her I wanted to help her. She started to whimper and said, “I wish you could.” I asked if she could tell me what the problem was. She couldn’t.

As we left the kitchen, I took her hand and led her to our bedroom. I stopped at her side of the bed. She sat down, and I suggested that we get back in bed. She was hesitant but got in and leaned against the backboard but not in a straight sitting position. She was still bothered by something.

I got in bed and had an idea. First, I put on an album of beautiful music by Joshua Bell.  I decided to try diverting her by getting her to help me. I told her I was a little keyed up and needed her help to relax. I moved close beside her, and she gently stroked by arm. Neither of us talked. She began to relax. It was almost an hour later when she began to fall asleep. I was about to get up when she asked if I could sit beside her and talk to her. Then she said, “You don’t even need to talk, just sit here with me.” I sat on the bed beside her for fifteen minutes. We didn’t say much though we did express our love for each other. She was very calm and relaxed. Finally, I told her I was thinking of getting dressed and asked if that would be all right. She said that was fine and sounded like she really meant it.

At 8:45, I had just finished my breakfast and was about to take my morning walk when I noticed that she had gotten out of bed again. I went to her and found her in a good humor, but it didn’t appear that she knew where she was. I told her I wanted to show her something. We went to the hallway where I showed her the picture of her mother. We didn’t linger as long as we usually do.

She wanted to move on. This time she walked to another bedroom. I can’t remember why, but I left her a moment. When I came back, she was in the closet. We use this one primarily for storage of games, photo albums, and miscellaneous stuff that we should probably gotten rid of long ago. I asked what she was doing. She said she was cleaning up. Most of what she had picked up to trash was just that, but some were things we might want to keep. I helped her sort them out.

I suggested we go back to our bedroom and get her dressed. She agreed. After she was dressed, she asked if she could lie down again. I told her that would be all right. That was about an hour and forty-five minutes ago. I think that’s good. That enabled me to take my walk and write this post. It is now approaching time for lunch. If she isn’t awake in the next thirty minutes, I’ll wake her. I’m optimistic that she will be fine, but I am used to surprises.

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Adapting to Changes in Kate’s Sleep Pattern

I’ve alluded many times to my OCD tendencies and my adaptability with respect to Kate’s Alzheimer’s. For the most part, I am pretty flexible and don’t experience any anxiety when things can’t go the way I planned. The hardest thing has always been my commitment to be on time. Kate’s Alzheimer’s presents a problem for me. I try to allow plenty of time to have her ready for all appointments and other obligations. This would include those that are self-imposed like having lunch together before the sitter arrives. I had a schedule that was working, but Kate’s recent changes in her sleep/rest pattern have upset things a bit.

Ironically, I’ve experienced more anxiety on the days we have a sitter than on the days we don’t. That doesn’t seem like the way it should be. It really shouldn’t, but the problem for me is two things. I feel a need to have Kate ready when the sitter arrives. It also involves the plans I have made for myself during that time. On Monday, my Rotary club meets at 12:30. The sitter arrives at noon. That works fine unless I’ve had trouble getting Kate up and dressed. This is self-imposed because I wasn’t sure how comfortable Kate would be having the sitter get her out of bed, help her with toileting, and dressing her. I am less sensitive to that now, but I still like for her to up and dressed when I leave.

On the other two days, I generally have more flexibility. The sitter arrives at 1:00. That gives us an additional hour to get ready and eat lunch. In addition, I rarely have any appointments as early as 1:30. That allows me a little extra time. It is not unusual for me to stay as long as fifteen minutes after the sitter arrives. Now that we are homebound, I have spent as much as two of the four hours at home. I could easily get along without a sitter now, but I don’t want to run the risk of losing them should I temporarily discontinue their service.

Several times recently Kate hasn’t gotten up until late in the afternoon. The first day I made a concerted effort to get her up. I didn’t push her too hard but far enough that I got a hostile reaction. I backed away. Since then, I have let her stay in bed as long as she wanted, but it bothered me.

Friday was another one of those days. I took a very non-threatening way of waking her. About thirty minutes before trying to wake her, I turned on music that I hoped might gently wake her. Then I took my laptop into the bedroom and worked on a blog post. I waited for her to open her eyes and see that I was there and then casually spoke to her in a way that she wouldn’t take as the first step to get her out of bed. I was very relaxed. We talked a little, but I didn’t try to get her up. She seemed in a good humor but sleepy. When I finally asked if she would like to have lunch with me, she wanted me to go ahead. I told her I would really like to eat with her but said nothing more. She didn’t move. I told her I would be in the kitchen if she needed me.

This time I believe I really accepted this as part of the natural progression of her Alzheimer’s and not a time for her to change. I’m the one who needs to do that. Having done it, I feel much better. To my surprise, I think the overall adjustments we are making in connection with being homebound have made this change easier than it might have been. It’s been a time when I have fewer obligations even those that are self-imposed. Except when I prepare a meal, our lives are more relaxed.

Since Rotary is not meeting, I have changed the time for our Monday sitter to 1:00 from noon. That and the fact that I don’t have to rush away when she arrives creates a greater feeling of relaxation. Like everyone, I am accepting a lot of things that were not my first choice. Given everything that is happening, fretting over her sleeping seems less important than it was before.

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A Day of Recovery

I’ve written two long posts in a row. There is little reason to do the same today. What I believe is important  is that the day went well. I let Kate sleep until she got up on her own about 11:00. Even better news is that she seemed fine. I easily got her to the bathroom and dressed. Then we were off to pick up our lunch.

We started to look at one of her photo books after lunch, but she wanted to rest. She slept a good while and then just rested for the balance of the afternoon. She was asleep when I told her it was time for dinner and not eager to get up, but she did.

As soon as we finished dinner, we went back to the bedroom. At 7:15 she was in bed. She went to sleep rather quickly and had a peaceful night until 4:00 this morning when she said, “What should I do?” I told her it was a good time to sleep. She asked me a question about some people she thought were in the room. I told her I had taken care of them, and we could go back to sleep. I did. I assume she went to sleep as well because I didn’t hear from her again.

It was an uneventful day, no drama. I think all of us need that once in a while. I know we did.

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Life is Different for Us Now, and It’s More Than Covid-19

It is Thursday, three days since my previous post. Some of my readers have let me know they wonder if something is wrong when I miss a day or two. I usually say that I have been busy and that we haven’t experienced any significant problems. That answer doesn’t fit this time.

I have been busy, but a good bit of that has involved problem-solving with Kate. She hasn’t been her normal self. It seems to be an escalation of the problems surrounding her sleeping late. It’s not just the sleeping that is the problem. She has been more confused. She frequently thinks she is not in her own house. Now, however, it seems that she typically believes she is somewhere else. I don’t believe there was a time yesterday when she realized she was at home.

It’s not just home that she doesn’t recognize. She is also having more trouble recognizing me as her husband. It’s ironic that she is simultaneously remembering my name more than she has in a long time. That provides me with a certain amount of comfort although she frequently asks, “Where is my husband?” or says, “I wish Frank were here.” That was especially true yesterday. Before I tell you about that, I need to follow up on our very busy day Sunday. It will be easy to summarize.

You will recall that she was up early on Sunday and very active. She wasn’t agitated, but she was awake all but a very brief time during the entire day. She slept well that night and was wiped out the next day. I made an effort to get her up for lunch before the sitter came. That was a lost cause. I decided to let her sleep/rest as long she wanted. I finally got her up for dinner at 5:45.

She didn’t want to come to the table. I set up a card table and folding chairs in the bedroom, and we ate our dinner. She was still tired after dinner and wanted to go to bed. She slept well. When she woke up on Tuesday, she was back to normal. We had a good day. That brings us to yesterday.

Kate got up about 6:45. I don’t recall her ever getting up so early in years except for a bathroom break. I was in the kitchen when I looked at the video cam. She was starting to make up the bed. When I went to her, I found that she seemed wide awake. I offered to take her to the bathroom. She didn’t want to go. She also didn’t want to get dressed. She wasn’t irritated with me. She just didn’t want to do these things. She was somewhat like she had been on Sunday. She felt there were things she needed to do.

I had taken my plate of scrambled eggs with me to the bedroom. She saw them and said, “That looks good.”  I told her I could make some for her. She liked the idea, and we went to the kitchen.

Throughout the entire day, she kept “losing” me. In most instances, I was very near her at the time. She just didn’t see or recognize me. This first occurred as I walked ahead of her from the bedroom to the kitchen, she lost me a couple of times and asked where I was. She didn’t seem terribly upset, but she was relieved when she saw me. This continued at the table while I was getting her breakfast of apple juice, strawberries, grapes, and scrambled eggs. She ate every bite. I was pleased because she hasn’t wanted eggs in a long time. I’m glad to have a more nutritious option for blueberry muffins.

It was also a day when she didn’t recognize me as her husband nor that she was in our home. She was especially surprised when I started to load the dishwasher. She acted like I was her guest and said she would do it later.

Several times she said, “Where is your brother?” I told her Birmingham. She said, “Why is he there?” One time she said, “When is he coming?” This surprised me as she hasn’t said anything about my brother in a long time. I can’t imagine what prompted her to remember him.

After breakfast, she was tired and wanted to rest. I suggested she get dressed first and then rest in the family room. She accepted my suggestion and slept almost an hour, much less time that I expected given that she was up so early. Since I had missed my morning walk, I took advantage of the time and took it then (inside the house, of course).

The next surprise was that she started to get up after she was awake. Normally, she would continue to rest and only get up when I suggest that we do something together. I asked her where she was going. She said she didn’t know. That’s when I suggested that I come over to the sofa and look at one of her photo books with her. She agreed.

I picked up a photo book and sat with her. She didn’t know who I was and asked my name. I told her, and she wanted to know our relationship. I told her I was her husband. This was a time when I shouldn’t have been honest. She was bothered by not knowing. I told her I didn’t mean to upset her. She said she wanted me to be honest. She went on to say she was not herself. I told her I recognized that. She wanted to know why she was this way. She said, “It’s not just my memory. I don’t know how to do things.” I said, “That must be scary.” She said, “It is.’

She wasn’t as interested in going through the photos as she usually is. That led me to go in a different direction. I started to give her a tour of the living and dining rooms. We passed by a photo of our twin grandchildren. She enjoyed seeing them. Then I showed her a pitcher with a note from her mother that said it had been a gift from her father to his mother and that she had kept in her living room many years and was to go to Kate who could pass it along to our daughter Jesse. Kate was moved by this. From there we went to the living room. I showed her a cabinet with eighteen porcelain dolls. Her father had given them to her mother for anniversaries, birthdays, and other special occasions. At this point, she got very emotional and indicated this was too much for her. I suggested we eat lunch. I fixed her a grilled ham and cheese sandwich and a salad with chicken for me. She sat at the table while I prepared the meal. Several times, she said, “Where is he?” Each time, I walked to her and said, “I am right here. I wouldn’t leave you.” She was very relieved each time.

After lunch, we went back to the family room to look at photo books again. That’s what we were doing when the sitter arrived. Kate was still confused. I decided not to abruptly  get up and leave. Mary had brought her lunch and ate it in the kitchen while we continued to look at family pictures. When Mary finished, she came back to the family room and took a chair across the room. Finally, I told Kate I thought I would take a walk around the neighborhood and asked if that would be all right. She said that would be fine, and I slipped out.

I was gone forty minutes. I expected to see Kate asleep on the sofa. Instead, she was still looking at her photo book. That is very unusual. She always likes to nap after lunch. In addition, I don’t remember a time when she spent that long looking at photo books by herself. It makes me think that she was trying to find something that would jog her memory.

More importantly, she was more confused than when I left. She looked at me with a flash of recognition but was puzzled. I think she recognized me as someone she knows but not as her husband. I sat down with her and went through the book giving her information about the people she in the book. Several times she asked my name and relationship. I told her, but she didn’t express any great emotion.

I could tell rather quickly that she needed something to divert her and thought of her father’s family movies that had been transferred to DVDs. I mentioned them to her, and she was interested. We went back to the bedroom where I put in one of the DVDs. The part we watched was shot around the mid-to-late 1930s, so the quality of the film is poor. The sound that accompanies them was made by Kate’s father, mother, and two cousins as they watched the films we watched. That helped us identify most of the people. That is especially important for the children we have only known as adults. Kate was immediately taken by what she saw. We watched for an hour before ordering a takeout meal for dinner.

During the film, Kate periodically said, “Where is my husband?” Each time I said, “I am right here.” She experienced immediate relief and then asked the same question again. It was a bit frustrating for both of us, she because she didn’t know where I was and didn’t recognize me as her husband, I because no matter what I said I could give her only momentary comfort.

We went through this same routine at dinner. After we finished, she was tired and ready for bed. She was still awake when I joined her two hours later. She didn’t ask about her husband, but I could tell by the way she responded to me that she didn’t believe I was he.

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Our Busiest Day

From time to time, I’ve said I wish my memory would allow me to report more clearly the things that Kate and I experience while “Living with Alzheimer’s.” That has never been truer than the following account of what happened yesterday. The best I can do is to sketch what happened without the full details that would enable you to get a better feeling for what it was like.

It is unusual for Kate to get up during the night, but the day began at 1:00 a.m. when Kate said she wanted to go to the bathroom. We took care of that without any difficulty and returned to bedroom. I don’t think either of us was awake too long after that.

At 5:00, Kate was awake again and said, “What do we do now?” I told her it was early and that it would be good to go back to sleep. I think she did. I know I did and woke up for good about 6:15.

I had just finished combing my hair when she came to the bathroom door. She was looking for something. She had already gone to the hallway and family room just outside our bedroom and turned on the lights. I don’t remember what she said, but she had the impression that guests were coming to the house, and she needed to prepare for them. Typically, when she gets up, she is a little groggy. This time she seemed awake and on a mission.

I suggested that she use the toilet so long as she was there, and she agreed. Then she said, “What now?” I told her it was still early and that going back to bed would be a good idea. She was very compliant, and I got her back to bed. I went back to the bathroom to shave and then got dressed.

I had finished my breakfast and was about to take my walk when I heard her call. I went to the bedroom and found her ready to get up for the day. She was concerned about the guests who were coming and wanted to make sure the house was in order. I got her dressed and invited her to breakfast. I had a fruit muffin left over from our takeout meal the night before and heated it in the microwave for her. Although she said she was interested in joining me for breakfast, it was difficult to get her to the table. It was another example of the passive aggressive response she has given when I wanted her to get up, and she wanted to stay in bed. As she has done in those cases, she hears me but ignores me.

I heated her muffin in the microwave and invited her to the table. She said she was coming, but she didn’t come to the kitchen. Instead, she walked around the house looking over things to see if they were in order. She keeps some of the paper doilies she picks up from one of the restaurants we visit regularly on her dresser in our bedroom. Before leaving the bedroom, she meticulously rearranged them along with a hairbrush. She continued this effort in the family room and kitchen.

It took several requests before she sat down. I was both puzzled and frustrated that she didn’t come right away. Ultimately, she came, but she only ate a portion of her muffin and some sliced peaches.

From the time she got up, she was concerned about being ready for our guests. She didn’t seem to know anything about them. She repeatedly asked me their names and what time they were coming. I told her she had plenty of time as they weren’t coming for two or three hours. She expressed mild initial relief. Then she completely forgot and started her questions again.

Kate was much more talkative, and her aphasia was evident. I had great difficulty understanding much of what she said. That was true the entire day.

When it became clear that she was not going to finish her breakfast, I suggested we spend time together in the family room. I got her to take a seat beside me on the sofa and picked up her “Big Sister” album that her brother had given her two years ago. We spent a long time with it, and the distraction worked beautifully. She forgot about our guests and getting ready for their arrival.

Our daughter called while we were looking through the album. Kate talked a lot, and Jesse was able respond appropriately. By that, I mean that she only made facilitative responses to Kate’s sometime unintelligible comments. That kept Kate going. I was happy because Kate was enjoying herself.

It was soon time for lunch. I wanted something quick and easy and chose the Brunswick stew I had purchased late last week. We had a pleasant lunch, and she wanted to rest. I was surprised she hadn’t rested during the morning because she had gotten less sleep the night before and assumed she would rest a long time.

She didn’t rest long before she seemed wide awake. We spent more time with photo books. She was getting along quite well. I told her I wanted to show her something in the living room. I am beginning to sound like a tour guide, as I take her through all of the items that were in her parents’ home. I don’t think that was the key at all, but she was very moved by everything I showed her. It was a moving experience for her.

When we finished the tour, we sat on the sofa. She was very emotional and said, “I feel so good. I can’t remember having a day so good.” She repeated this with variations for a few minutes. It was a special moment for me as well. We still had time before dinner, and she was tired and wanted to rest.

I took that opportunity to get on my laptop and sit in a chair directly across from the sofa where she was resting. I wanted to write this post. I had a second thought and decided I would send an email to Jesse and Kevin to let them know that we were having such a good day. I also thought that would provide a good start for writing a blog post.

I didn’t get far before Kate was finishing her brief rest. That made me think about getting something for dinner. I told Kate I would be in the kitchen and would call her when it was ready. While I was in the kitchen, she got up and started wandering around the family room. She called to me. (Yes, she used my name and did so most of the day.) I found her attempting to disconnect the router. She had already unplugged the cable that powers her lift chair. I told her not to touch the router and attempted to explain while knowing she could not understand. This was a frustrating moment because I had been heating some bean soup that had overflowed on the stove top.

I went back to the kitchen. She called again. She was working on the router. I reminded her that she should not touch it. I left for the kitchen. As I was cleaning up the mess, she called again. She had forgotten about not touching the router. I reiterated how important it was to stay away from it and suggested she come into the kitchen with me.

She wanted to help me, but I couldn’t figure out anything useful for her to do. She wandered around the kitchen picking up things. I keep a stack of bills and other communication that deserve attention on my desk. She separated those and arrange them on the desk.

She was back in the family room when I put the food on the table and called her to dinner. She said she was coming but didn’t. I went to her and told her the food was ready, and she could join me. I went back to the table, but she didn’t come. I tried another time and she came.

She was very talkative. It began when she look at something across from her and thought it was a person. Some of her comments were addressed to her and some to me. She talked and talked, but she wasn’t eating. Her aphasia was active. I couldn’t understand much of what she said.

I began to think she might have a urinary tract infection (UTI). I called her doctor’s office. No one answered, not even the answering service. I tried to contact the nearest urgent care center. They had closed for the day. I called Virginia, Kate’s brother’s wife. She is a retired pharmacist with a good knowledge of health and medical issues. I wanted advice on how to proceed. She said she would probably go to a 24-hour urgent care center if one were available. I looked and didn’t find one in our area.

I went back to the table where Kate was still sitting quietly in front of her food. I decided to give her a breakfast bar. She was very calm, nothing like she had been minutes before. That made me think it was not a UTI but Alzheimer’s that was causing the problem.

I cleaned up, and we went back to the bedroom where I got her ready for bed. She had a little difficulty knowing what she should do next and understanding what I told her, but that is normal. She was in bed rather quickly, and I put on an Andre Rieu concert from Maastricht. She relaxed and listened to the music. Nothing eventful happened after that. When I got in bed a couple of hours later, she was either awake or I waked her. She was as loving an affectionate as usual.

It was quite a day. Kate was confused and busy all day. I didn’t get my walk. I didn’t check email. I didn’t write a blog post. The possibility of a UTI was disturbing on a Sunday evening. I have often said that when Kate is happy, I am happy. The converse is also true. We had quite a mixture of happy and disturbed yesterday. I was up with her, and I was down with her. On the other hand, a large part of the day was as good a day as it can be including the end of it. I am very grateful for those “Happy Moments.” They offset the difficulties encountered the rest of the day.

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From the Mountain Top to the Valley in Less Than Twenty-Four Hours

Wouldn’t you know it, right after our wonderful day Thursday, Kate had a bad day yesterday. I have no explanation except to say she has Alzheimer’s. Changes can occur from one day to another and sometimes from moment to moment. I know the source of the problem is in her brain, but I don’t know what happens that causes the brain to change like that. Here is what happened.

I started to wake Kate around 11:00. Recently, I have felt I may have been more abrupt in waking her, so I took a slower approach. I began by turning on an album of show tunes by Julie Andrews. Then I went in to say good morning without appearing to look like I was in any hurry for her to get up. She smiled. I was encouraged. When I suggested it was time to get up. She said, “In a few more minutes.” That was a clue to what followed. What she said and how she said it was exactly what she has said on other days when she didn’t want to get up.

At 11:30, I remembered that I had scheduled an appointment for haircuts at noon. They are closing all barbershops and hair salons tomorrow, and this was our last shot for a haircut. I explained that to her. Once again, she acted like she understood me and didn’t appear to be obstinate. She just closed her eyes and acted as though she didn’t hear me. I tried to encourage her to get up for fifteen minutes and then gave up. I knew she had dug in her heels.

The sitter was to arrive in another hour, so I decided I would wait for her and then get a takeout meal for myself. When Mary arrived, I explained the situation and took her to the bedroom to let Kate know that she was here. Kate hadn’t had her morning medications, so I got them for her. In the past two weeks, it has become more difficult for her to take her medicine. She puts the pill in her mouth and takes drink of water. She doesn’t, however, swallow the pill. She takes it out of her mouth.

Over the weekend, I placed a grocery order for delivery on Monday. It included apple sauce I had bought just for her medications. Then I discovered that using apple sauce doesn’t necessarily work like a charm. I put apple sauce in a spoon with a capsule on top. She took it in her mouth but didn’t swallow it. That led me to open the capsule and mix the contents in with the apple sauce. That worked. I tried another pill and had the same results I had experienced with the capsule. She swallowed the apple sauce without the pill. We tried again, and it worked. Next time (this morning) I need to crush the pills.

I got my take-out lunch and brought it back to the house. When I finished eating, I decided to take care of a couple of income tax matters. I got caught up in that and spent more time than I expected. I ended up staying at the house all but thirty minutes of the time the sitter was here. That turned out to be productive although I felt funny staying home with the sitter. The only time I left was to drop by the pharmacy for a couple of things.

Kate never stirred while Mary was here. She left at 4:30, and I went to the bedroom to see if Kate was awake. She was. We chatted briefly. She seemed all right, but, unlike yesterday, she wasn’t at all cheerful. When I mentioned that it was approaching the time for us to get a pizza, she seemed interested. When I told her I would help her get up and dressed, she responded as she had in the morning. I tried several times over fifteen minutes. Then I decided to have the Brunswick stew I had bought the day before. I set the table and heated it. I wondered if she would get up when dinner was ready and thought about what I would do if she wouldn’t. Putting up a card table and chairs beside the bed seemed like a good alternative. That turned out to be what I did.

As soon as we finished eating, she wanted to go back to bed. I turned on YouTube videos for two and a half hours. She seemed to enjoy them, but she didn’t express the kind of enthusiasm she often does. Then I wondered if she would be able to go to sleep. That did not seem to be a problem, and she slept through the night. It is now 11:00, and she is still asleep. I am on the computer in the bedroom. She has awakened several times and spoken to me. She seemed all right. The test will be what happens when I try to get her up. I’m going to wait until she wakes up again before I try that.

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A Happy Day

I’m glad I’ve been able to relay so many good times that Kate and I have had since her diagnosis, but you must have noticed that sometime last year I began to talk about things that have been more challenging. These challenges seemed to escalate just before or during our recent holiday season. The good times were far from over, but I have had to work harder at problem-solving. Still, the balance between good times and trying times remains heavily tilted in favor of the good ones. I think that is a major reason for my lack of interest in adding more help, something I could quintuple without its costing me a penny.

There are also a few days that stand out because they are filled with happy moments. When they arrive, I think of each one as a gift. That is what is was like yesterday. It began at 5:15 in the morning. I was awake and considering whether or not to get up. It turned out that Kate was also awake. She moved closer to me and said with a slight chuckle, “Hello, how are you?” I told her I was fine. She reached across my chest, and we spent the next 30-40 minutes just enjoying being close. I don’t know whether she remembered my name or our relationship, but she conveyed her comfort and love that was very deep.

At 6:00, I told her I was going to get ready for the day and have breakfast. Just before 8:30, I heard her say, “Hey.” She often talks in her sleep. I waited a moment to see if she were calling me. She said, “Hey. I’m in here.” I went to see what she wanted. I found that she was quite cheerful. We chatted about ten minutes. I asked if she wanted to get up. She said, “I don’t know. What should I do?” Knowing this was earlier than usual, I told her it was up to her. I mentioned that if she got up, I could give her a blueberry muffin. Her eyes brightened, but that didn’t cause her to bounce right up. We talked a little more. She finally said, “Why don’t I rest a little more and you tell me when I should get up.” I did. Fifteen minutes later, I went back. She was ready to get up. She was confused about the usual things (where she was, where the bathroom was, what the toilet was, etc.) but not disturbed and needed my help with everything. More importantly, she happily accepted my help.

I warmed up her muffin and gave her a side of fresh blueberries as well as a few slices of canned peaches. I fixed myself some coffee and sat with her. She loved her breakfast, and each of us enjoyed the other’s company. When she finished, we adjourned to the family room where I picked up the photo book of Facebook pictures that I purchased two weeks ago. I wasn’t at all surprised when she said she was tired after only looking at a few pages. She lay down on the sofa while I got my laptop and returned to join her a chair across from her.

While she was resting, I received a phone call from a friend telling me about a popular lunch place that was serving takeout. We’ve eaten there before, but it had been a long time. I went to their website to look over the menu. I ordered a turkey melt for Kate and pulled barbecued chicken with a mixed green salad. We went to pick it up. She stayed in the car while I got the food. As I walked in, I saw homemade tomato basil soup and Brunswick stew to bring home as well.

After lunch, we walked from the kitchen into the family room. Kate immediately commented on the spring flowers in the back yard. The azaleas and dogwoods are in full bloom. She delighted in pointing out the things she especially liked. When we finished, she wanted to rest. I walked her to her recliner. She asked if that was where I wanted her to sit. I said, “Yes, and I’ve got your Dr. Pepper right on the table beside you. She was childlike in her excitement and chocked up about my having her favorite drink. Once in a reclining position in the chair, she said mentioned something about her friends. I said, “I hope I’m one of them.” She gave me a gentle and sincere smile and said, “I think you’re going to be.” She paused and added, “What is your name?” I said, “That’s one of the things I like about you. You are so honest.”

The biggest surprise of the day came late in the day after she had rested a long time. She was enjoying the beauty from her recliner, taking in all the spring flowers and new leaves on the trees.. I had been sitting a while and decided I wanted to walk around inside the house a few minutes. She asked me something about it, and I casually asked if she would like to walk with me. I was shocked when she said yes. That was the first time she has done so. She asked where I was going to walk. I decided to take advantage of this opportunity and told her I was going to walk down the street a short way and then come back. Off we went.

I wondered if she would back out before we got to the street, but she didn’t. The walk was short in distance (four houses down from ours), but very enjoyable. She was enthusiastic about everything she saw starting right outside of our garage. It took about ten minutes to get to the street. This continued down the street and back. She was like a little child at circus. As she does inside the house, she wanted to point out everything to me as though I couldn’t see it myself. Thirty-five minutes later, we were back in the house. I considered this quite a victory. I had finally gotten her to walk, and I enjoyed seeing how happy she was. It was a perfect day to be outside, lots of sun and temperature in the lower-70s.

I put on an album of Peter, Paul and Mary while we ate dinner. Kate and I enjoyed hearing so many songs that were popular just before and during the early days of our marriage.

The only rough spot of the day occurred after dinner. Thinking she was somewhere other than home, Kate was ready to leave. I explained that we were home and that we would spend the night here. She accepted that. It wasn’t long, however, before we ran into another problem. She got the impression that people were coming to our house. I mentioned that people were not supposed to gather together like that. She asked why. I told her about the coronavirus pandemic. It was impossible for her to understand. I could see that was a losing cause and tried to divert her. I was successful briefly, but the she would remember again that people were coming to see us. That is when I turned, once again, to music for help.

Most of the music we play on YouTube is either classical or Broadway. Hearing Peter, Paul and Mary during dinner prompted me to see what YouTube had. It was no surprise that there is a lot. The rest of the evening was devoted to PP&M. It was another happy moment and a perfect way to end an almost perfect day.

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Sleeping In Again

For the first time in a couple of weeks, Kate didn’t want to get up on Monday. It was a day for sitter, and I was eager to eat before she came. I planned to order a takeout meal online from Panera. When realized I wasn’t likely to be successful getting her up, I decided on delivery. l thought she might be willing to get up when the food arrived.

She had other thoughts. As in the past, she didn’t seem disturbed or unhappy. She seemed quite relaxed until I started to encourage her to get up. Then I backed off and asked if she could tell me if something was wrong. At first, she couldn’t. Then she said she had a pain but couldn’t tell me where it was. I told her I would get her a Tylenol. When I brought it to her, she refused and got mad at me. I decided to let it go and left her with the sitter.

With all the emphasis on social distancing, I had been a little concerned about having a sitter, but I needed a few things from the grocery store and ran a couple of other errands. Then I went home. I had been gone only an hour and a half, but I let the sitter go. The deal with the agency is that they charge a minimum of four hours even if I return early. For that reason, I didn’t have to worry about the sitter’s losing income.

Kate was still in bed when I walked in. I put up the groceries before trying to get her up again. Getting a fresh start was a good thing. I approached the bed cheerfully and acted the way I would when I first see her each morning. I told her I was glad to see her and asked if she would like to get up. She was like a different person. She got up and dressed without a problem and wasn’t experiencing any pain.

She was like a child as we walked into the family room. She was especially taking with the flowers. The African Violets are blooming, and we still have four poinsettias. Kate loves showing everything to me as though I have never seen them before. I always express the same enthusiasm.

She was the same way eating the ham and Swiss sandwich with a side of grapes. This was the first time in a while that I had ordered anything with ham in it. She had gone through a period of time when she wasn’t eating ham. Her taste in food and beverages shifts a lot. I am now buying Diet Dr. Pepper, something she would never have drunk before. On occasion, I have gotten her Diet Pepsi at Panera. She has never liked Pepsi, but she drinks it now without noticing what it is. In fact, she never knows what drink she is drinking. Sometimes I get her lemonade, sometimes a mixture of lemonade and unsweetened tea. Only occasionally does she ask what she is drinking.

As an aside,  she has a recurring hallucination while sitting at the kitchen table. She looks at the pillows on the window seat across from her and believes she sees a person. Sometimes it is a woman, other times a man. Sometimes she/he disappears. Her vision is poor, so there are many things she sees that are confused with other things.

Since she got up at 3:15, I thought she might not want to go to bed until later. She fooled me and was in bed at 7:30 and went to sleep watching YouTube videos. As it usually does, the day ended on a high note. It was like the had had an ordinary day, and she had only been up four hours. I should add that she slept until 11:00 yesterday, had lunch, and rested again.

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Busy Days with “Unintended Consequences”

It’s been more than forty years since I was involved in academic sociology, but I occasionally think about sociological concepts that apply to current situations. Sociology focuses on human activity as part of a social system. The most basic one is family, but it also includes systems like the workplace, the various voluntary organizations, and extends to larger systems like a community, town or city, country, and beyond. When there are changes in one part of a system, there are often implications for other parts as well. Sociology has no monopoly on this view. It’s just that sociology specializes in this perspective. Common sense alone frequently reminds that we are all interconnected.

We need no better example than the current global impact of the spread of Covid-19. Like it or not, this has dramatic consequences for all of us. I suspect that many of us have discovered corresponding changes we hadn’t thought about. Sociologists refer to these as “unintended consequences.”

My own thought about the impact of our not eating out (as well as that of others who have reached out to us) focused on the reduction in our social contact. That has happened, but there are other things I didn’t think about (unintended consequences). By themselves they are not seriously disruptive. One by one, however, they represent increasing responsibility and effort on my part. So far, the changes are manageable, but everything requires more thought than it did before Covid-19.

The specifics may be different, but you are no doubt having similar experiences. I don’t mean to suggest that our situation is any more difficult than yours. My intent is just to describe what is happening with us and how we are handling things.

As you would expect, my biggest concern has been for Kate. She hasn’t been able to grasp what is going on. I don’t think she perceives any of the changes that have taken place. She doesn’t remember that we have been eating out for about eight years. Thus, she treats getting takeout and my preparing meals as though this is the way life has always been.

This might lead you to think that the changes do not affect her;  however, I believe there has been one important unintended consequence for her. Because we are home significantly more than before, she rests more. I address some of that by personally spending more time going through family photo books and touring the house with her. Still, she really gets tired and likes to rest. Most of her confusion occurs during or right after sleeping or resting. As I have mentioned before,  this is more likely in the morning after a full night’s sleep. The upshot is that she has experienced more confusion and delusions this week.

Wednesday was particularly problematic. We got off to a good start when Kate woke up for the day at 7:45. I was about to put my eggs in the skillet. She said she wanted something to eat. First, I took her to the bathroom. When we finished, I decided not to get her dressed because I thought she might want to go back to bed. Then I told her we could have breakfast together and gave her a blueberry muffin I had gotten at Panera the day before. I fried my eggs, and we ate breakfast together for the second time in the past few weeks. It took her a while to eat her muffin, but she did and then wanted another. I had purchased three and put two in the freezer. I took one out, heated it in the microwave, and gave it to her.

After breakfast, we looked at one of her photo books together. Very shortly, she wanted to rest. An hour later, we looked at one of her other books until it was time for lunch. I called one of our regular restaurants that is offering takeout service. I placed the order, and Kate and I picked it up.

As we were eating, she said, “Where is my mother?” Sometimes when she asks about her parents, I tell her they are gone. Other times, I don’t. This time I said her mother was in Fort Worth. She was confused about other things. I don’t recall exactly what they were, but they involved her background and family. She was disturbed about not knowing and wanted to learn. She also didn’t know me.

I told her I would be able to help her and took her into our dining room and living room and showed her things that had been in her parents’ home. We have done this several times in the past couple of weeks. This time she was more animated by what she was learning. Right away, she was no longer disturbed.

Most of the day, she felt that she was somewhere other than her home. As we walked through the two rooms, she kept identifying items that she wanted to take home with her. In several cases, she wanted to pick them up right then. I suggested we finish the tour and then come back and get them. She agreed except for a decorative plate on the living room wall. I carried it for her as we went into the family room where we looked at several other things. She was ready to rest, and I put the plate back in the living room. The tour had distracted her. She was fine although she still believed she was someplace other than her home. I can handle that. I get disturbed when her confusion bothers her. In the end, our home tour made both of us happy.

She was more confused and disturbed after her nap. This time, I suggested we go outside and look at the flowers. Before we walked out of the house, she talked about how much she liked the house and asked me “who lives here.” I told her we did. She was surprised. She must have asked the same question five or six times between then and our getting back in the house fifteen minutes later. She enjoyed the brief (10-15 minutes) time outside and the spring blossoms. She was fine when we went back inside.

It was time for me to prepare dinner, and she rested again. She was confused and worried when I got her up for dinner. I don’t recall the specifics, but she was worried about people she thought were in the house with us. This continued through dinner. Afterward, we went back to the bedroom where I helped her get ready for bed. I found an Andre Rieu concert in Italy. She responded quickly to the music and it and several other videos for the next two hours. She was fine again.

My take on this is that she is comfortable so long as she is engaged in things that she can enjoy. Previously, eating out provided the kind of stimulation that did that. More importantly to me, it provided enjoyment for both of us without my having to create something. Without that, it takes a lot more time to entertain her.

That was our most challenging day of the week. I was relieved when she got in bed and responded happily to the music.

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How Are We Doing?

Over the past week, I’ve received a number of emails and phone calls inquiring about Kate and me and how we are adapting. My answer is that we are “managing” or doing “all right.” That’s different from my normal response of “remarkably well” that has seemed appropriate for so long. The abrupt disruption of our daily routine means we are a little bit “off balance” but on the way to “righting ourselves.”

The most important thing I can report is the past few days have been rather busy for me. Most of that relates to the disruption of our daily routine by the current restrictions under which we are now living. Some of them relate specifically to changes that Kate has made. The latter fall in the category of the common things that happen all the time but seem more troublesome while we are going through an adjustment to being largely housebound. We’ve grown accustomed to being out-and-about. Let me outline a few things that have occurred this week.

This past Sunday, Kate woke up and was frightened. When I said I would like to take her to lunch, she didn’t want to go out because people would make fun of her. She said, “No one likes me.” I tried to reassure her. That didn’t help until I said, “Amanda likes you.” Her eyes lit up, and she said, “Who is that?” I told her she was our server at Andriana’s. That was enough to redirect her attention.

During the week she has been more confused than usual about her food and eating. At Andriana’s, she didn’t recognize or know how to eat her bread. As I usually do, I took a large piece and broke it into pieces and buttered it for her. Then I put the plate with the bread in front of her. She said, What’s this?” I told her it was her bread, and she asked me what she should do. I told her she could just pick it up and eat it. She looked confused. When she finally decided to pick it up, she used her fork for the bread.

After finishing her bread, she put her drink where her dinner plate was to go. When the server brought our meal, I told her I would place it on the table and asked Kate to move her glass so that I could put her plate down. Although I tried several times to explain what I wanted, she never understood me. I had to move the glass.

That is just one of many things she may not understand at a meal. Tuesday night, I prepared shrimp cocktail. She had forgotten what shrimp were and didn’t understand how to eat them. I held one in my hand to demonstrate and explained that she could pick it up by the tail, dip it in the ketchup (yes, I didn’t have cocktail sauce.), and take a bite. She didn’t understand what the tail was and doesn’t see well enough to notice the way I was holding it. I decided leaving the tails on wasn’t a good idea and cut them off for her. Then I told her to pick them up with her fork. She didn’t understand until I did it for her. I had also split a baked potato for us along with sliced apples. She enjoyed them but dipped both in the ketchup.

Two other issues involve her getting seated whether in a chair, the sofa, or getting in the car. It takes much longer (not because of Covid-19) to sit down than one would expect. I need to tell her, point, and put my hands on the chair she is to use. Even after that, she sometimes starts to go to another chair at restaurants. It happens regularly at home when I want the two of us to sit on our sofa. I like her to sit in the middle so that I can sit on the end where I have more light to read the text in her photobooks. We go through a similar I point to the middle of the sofa, walk over to it and put my hand on the middle cushion. Yesterday, she took a seat at the other end of the sofa.

Getting in the car involves a challenge of knowing which side of the car to get in and what to do when she is there. I don’t believe she distinguishes one side from the other at all. I do know that I need to lead her to the passenger side, open the door, and assist her getting in. When I open her door, she sometimes says, “What do I do?” or “I don’t want to drive.” or “You get in first.”

As I’ve said before, these are all little things, but they seem a little bigger now that I am trying to concentrate on managing a new life at home.

So, how are we doing? We are managing, and we will adapt as we have done in the past. I suspect that’s exactly what most of you are doing. We’re going to make it, but I feel for those who find themselves in situations that are far more difficult and serious than ours. We are fortunate that our biggest problems are little ones although that doesn’t count the biggest one of all, Kate’s Alzheimer’s.