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.

My 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. 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.

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.

Key Events from Yesterday

Kate has never been a breakfast eater. I am. The result is that we have eaten breakfast together only occasionally since we married now almost fifty-seven years ago. That has occurred most often when we were traveling and also periodically attending a monthly breakfast with a group from the Y. She got up early when the children were with us and when she was working, but she would quickly drink a glass of orange juice and eat a cup of yogurt. Now she generally sleeps until time for lunch. On those occasions when she gets up early, we go to Panera where she eats a blueberry muffin. When she gets up, I have already eaten. That came to an end yesterday.

I woke up about 3:00 yesterday morning and didn’t get back to sleep for a long time. As a result, I slept later than usual. I am sure the fact that it was only the second day of daylight saving time was also a factor. At any rate, I got up about 7:15 instead of 5:45 to 6:15 on most mornings.

It was close to 8:00 when I was about to fry a couple of eggs. I heard Kate say something and went to the bedroom. She greeted me warmly, but she was eager “to get outta here.” I told her I would be happy to take her. Normally I would take her to Panera, but this wasn’t a normal day. I hadn’t eaten breakfast. I decided to take her to Eggs Up Grill where we could have breakfast together.

I got Eggs Benedict, and Kate had blueberry pancakes. She hadn’t remembered what pancakes and syrup were, but she enjoyed every bite. It turned out to be a very nice way to begin the day. As happens when we go to Panera and back, she never mentioned wanting to “go home” or “get outta here” again (until next time).

Once home, she was ready to rest. I put on some relaxing music. She got on the sofa in the family room and went to sleep. She awoke about thirty minutes before the sitter was to arrive. I asked if she would like for us to look at one of her photo books. She liked the idea, and we sat together on the sofa and started one. It was only a few minutes before she said she was tired. She leaned her head on my shoulder, and we sat there listening to the music.

It was a very peaceful moment until I heard the doorbell ring. I told Kate it was the sitter and that I would be going to Rotary. I knew when I said it that the transition was too abrupt. She sat up straight, crossed her arms and gave me a dirty look. She was more disturbed than I would have expected. Fortunately, when she saw Cindy, she smiled and greeted her enthusiastically. I will make sure to follow my more typical pattern in the future. I like to stay a few minutes after the sitters arrive. I don’t have that much time on days when I have Rotary and will be more careful next time.

On the way to dinner, Kate told me that I take good care of her and continued to express her appreciation during the ten-minute drive to Chalupas for dinner. She emphasized that she could not live without me. I could tell by the way she said it that she understands just how dependent she is.

We had an unusual conversation at dinner. I wish I could tell you more about it. I had finished my meal and was waiting for Kate to finish hers when she started talking about the servers and kitchen help in the restaurants we frequent. This is not a new topic. She often asks me if I would like to have a job doing similar work. She seems to be worried about both the income that people make and the non-financial rewards that accompany this type of work. Her thinking goes beyond restaurants to many other types of jobs.

As she talked, it was clear that she was very relaxed. I think she was just enjoying talking. She failed to complete many of her sentences by saying, “You know” and then moving on. She also referred to “him” or “her” or “they” and “them.” That also made it difficult to understand who she was talking about. The topic also changed several times as well.

I paid our check, and she continued to talk. Several times I asked if she was ready to leave. Each time, she said, “In a few minutes.” I wasn’t able to make much sense of what she was saying, but she seemed happy that I was listening to her. After almost fifty minutes, she finally agreed to leave. The conversation ended after getting up from the table.

Kate continues to  be aware of many things she can’t do. That concerns her. I believe her talking this way was another instance of trying behave like a normal person. Conversations are difficult for her in terms of knowing what to say. When we are with other people, she also has trouble finding an appropriate entry point between the comments of the rest of us. I think the conditions were just right last night. It was just the two of us. We had had a relaxing meal. She was in the mood to talk, and I was a supportive listener. I just wish I could have understood what she said.

I May Not Understand It, But a Lot Is Going On in Kate’s Brain.

Over the past three days, Kate has displayed a variety of symptoms that illustrate how active her brain is even if it isn’t working the way it is supposed to. It began Friday morning when she experienced the kind of fright that kept her in bed all day a couple of times in the last three weeks.

Based on the previous experiences, I decided I would be more relaxed this time. When she said she didn’t want to get up, I lay down in bed and talked with her a few minutes. I had already put on some music. She liked it and asked me not to talk so that she could hear it. We listened a little while, and she began to perk up. That made me think getting her up might be easy. I was wrong. She told me she was scared. When I asked what she was scared of, she said she didn’t know. I remained in bed until she appeared to be asleep. Then I took a seat in a chair beside the bed.

I decided not to worry about our having lunch together. The sitter could do that. Half an hour before the sitter arrived, I told Kate the sitter was coming and wondered if she would rather that I or the sitter help her get up for the day. She said she would prefer that I do it. That was two hours from the time I had started to wake her.

She was able to get up without a problem and was ready when Cindy arrived. Kate thought I was going with them and gave me a disapproving look when I told her I wasn’t, but she didn’t say anything. I helped her into Cindy’s car, and they were off.

We went to a different pizza place that night. The hostess asked if we wanted a table or booth. Kate has been having trouble sliding across the seat of a booth, so I requested a table. Before we sat down, Kate said she didn’t like the table and pointed to a nearby booth. That’s the first time I recall her indicating a preference. I went back to the hostess stand and asked for that booth.

I almost always take her to the bathroom at home before going out but had not done so this time. Right after the server took our order, Kate wanted to go to the restroom. I asked the hostess if it was a restroom for one-person knowing that is better in terms of my going with her. She said it had three stalls. I discretely explained that Kate has Alzheimer’s, and I like to help her. She checked and found no one was in there. She said she would watch for anyone else who might want to use it. I accompanied her, and all went well. I was relieved. I feel much better when we can take care of toileting at home.

Back at our booth, Kate was concerned someone was out to get her. I asked who, but she didn’t know. She didn’t say anything more and quickly forgot. The balance of the day went well.

At 2:30 Saturday morning, she woke up and wanted to know what she should do. I told her it was the middle of the night, that she had no obligations and could relax and go back to sleep. We went through a number of variations on the same question and answer for about fifteen minutes before she went back to sleep.

At 5:00, she was awake again and wanted to go to the bathroom. I got up to help her, but she changed her mind. We talked for a short time before we were both asleep. We were going to a luncheon following a funeral mass for someone we know from our music nights at Casa Bella. I was concerned that I might have difficulty getting her ready. She surprised me as I began my morning walk. I saw that she was getting up. I went to her and found that she was wide awake. We made a trip to Panera and returned home where she rested.

While resting, she chuckled a good bit. When I asked what was so funny, she said, “You know.” A little later, she said, “Don’t you like the ‘try.’” I had no idea what was so funny or what she meant by “try.” Her confusion with words is getting worse. The easiest one for me to understand is “shows” for shoes. Sometimes she uses “shows” for socks.

I was a little concerned about the luncheon because I expected a crowd of people she wouldn’t know. That turned out not to be a problem. We were seated with two people we have known for a long time. Of course, Kate did not remember them, but she handled things well. She did ask a lot of questions that were obvious signs of her memory problems. These involved asking the name of the restaurant several times while sitting with the daughter of the woman whose mother opened the restaurant eighty years ago. We have been sitting her three nights a month for six years. The people at our table were very understanding.

It was very noisy. At first, that startled Kate, but she quickly adapted. When we left, she said she had enjoyed it. I was surprised because it was just the kind of situation I try to avoid because it can be so hard for her.

When we returned home, she wanted to rest again. After a while, I noticed that she was uneasy. I asked if there was anything I could do to help her. She said there was and began a lengthy conversation similar to others we have had. She was worried about a young man. She said that I know him, but she couldn’t think of his name. I tried guessing. That didn’t help.

What I learned was that she wanted to offer some financial help to this man. As she talked, she moved from talking about this specific man to a program to help promising boys and girls who did not have the financial resources to enable them to continue their education after high school.

She wanted my advice. This was very much like a recent middle-of-the-night conversation. She talked about helping people in her hometown of Fort Worth and was concerned about locating young people and a person or organization to administer the program. I gave her several ideas, and she asked if I would coordinate everything. I agreed, and she felt better about.

There is more, but I will continue in another post.

More Delusions and Hallucinations

Kate has experienced delusions and hallucinations for several years; however, they are more frequent now. Let me tell you about two of them that occurred yesterday. The first is a variation of one that occurs most often. It involves her noticing small things like specs of food on a plate or table or other little things she sees at home on furniture or the floor. She often speaks of them as “him” or “he” or “thingies” and says other things that convey she believes they are alive. Sometimes I can see them. Often, I can’t. She likes to point them out to me. Whether I see them or not, I generally say I do.

As we walked to the car after lunch yesterday, she expressed concern that she had done something wrong. She didn’t know what it was, but she seemed quite worried. I told her I didn’t know anything that she had done. She asked if I was sure, and I assured her she hadn’t. Once in the car, she started to pick at her teeth, something she does frequently. A minute later, she said, “I got him.” She held out her hand to show me the finger on which “he” was resting. She asked if I could see him. I told it was hard to see while I was driving. Then she wanted to know what to do with him. I keep napkins in the car for moments like this and started to hand her one when she wiped her hand on the side of her seat. She looked sad and said, “I think I killed him.” She was very disturbed. I tried to console her, but she was bothered for a few blocks before her attention was diverted to something else. She frequently picks up “thingies” like this in restaurants. It is common for her to be saddened when she hears about any human suffering, but I had never seen her express any special concerns about the welfare of these “thingies.” This may be extreme example of how active her emotions are right now.

Last night we had another experience with a delusion. She had gone to bed early, 7:30, and went to sleep, something that rarely happens that quickly. She is often awake an hour or two before falling a sleep.

When I got in bed, she was glad to see me. That is not unusual. I think she finds it comforting for me to be in bed with her; however, this time she wanted my help with a project for children. She was concerned because it was her responsibility to carry out the project and didn’t know how. I didn’t find out who the children were or how she had become obligated, but I did learn that it was a project to use animals to help “boys and girls.” I told her I would help and asked what she wanted me to do. She wasn’t sure how to find either the children or the animals. I told her I had some contacts at United Way that would help identify children and could also direct us to existing agencies that might administer the project. I went on to say that I knew people who are involved with animal shelters who might be able to assist with animals. We must have talked fifteen to thirty minutes before I said we had identified a way to approach the problem and could get to work this morning. She was fine with that, and we went to sleep. She didn’t say anything about it this morning, but I am sure there will soon be something else to take its place.

Diversion Seems to Work (At Least Yesterday)

Yesterday, Kate woke up and wanted to go home. We went to lunch. She forgot about home and didn’t mention it again. On a number of other occasions, I have found that going out for a meal is an effective diversion technique.

We had a sitter during the afternoon. When I got home, Kate was resting. I spoke to her, and she talked with me as though I were entering a dream with her. She thought someone had had a baby and asked me about him. At some points, I thought she was talking about having had a baby herself. Other times, it seemed like it might have been a son or daughter though she never said specifically. She was excited, and said, “We have a baby.” She asked “his” name, and I gave her the name of her father. She was thrilled. Not long after that, she asked “her” name. I gave her the name of her mother. She was equally excited. She continued talking about the baby after we were seated at the restaurant. She wanted to know when she would be able to hold it. She also wanted to know where the baby was. I found this to be a challenging conversation. Once I had started to go along with her, I found myself having to get more creative in answering her questions. I decided it might be good to redirect her attention and suggested that we go to dinner. She wanted to rest a little longer and asked if the doctor said it was all right. I told her he said it was fine, and we left for our Friday night pizza.

Her enthusiasm continued in the car and at the restaurant. It lasted so long that I thought the conversation might continue even after we got home. At one point, she asked if the children had called. I told her they hadn’t and explained they had been busy. She couldn’t believe they hadn’t even called and said, “But it’s our baby.” Fortunately, when the pizza arrived, her attention drifted to eating. I didn’t hear a word about the baby after that.

Examples of Kate’s Decline

Each morning I find myself wondering “What’s in store for today?” Even though most days go well, I am always on alert for problems. That’s how I was two days ago. I knew the sitter was to arrive at 1:00 and that I had an appointment to donate platelets shortly after that. I wanted to get her up in time for us to have lunch together. Around 9:00, I was encouraged when I heard her talking . I went back to the bedroom. She greeted me with a smile and chatted a few minutes. She said she was waiting for someone to take her home. I told her I would be happy to do that. She said that her mother would do it. Then she said it was “that guy” whose name she couldn’t recall. I asked her if she was ready to get up. She wasn’t. I told her I would be in the kitchen and to call me when she was ready. I was going to give her another hour or so before going in again, but less than thirty minutes passed before I heard her say, “I’m here.” She was ready to go home.

I took her to Panera for a muffin and then to lunch. As my previous posts about her sleeping later suggests, she gets very tired. She had taken her place on the sofa in the family room before Mary arrived. She was still there when I returned. During the past two or three weeks, with a couple of exceptions, she appears to have rested the entire time the sitters were here. Although she is comfortable with both sitters, I have the impression that she is going through a stage when she feels especially dependent on me and simply waits for me to come home. I am sure that is true with respect to using the bathroom. I’m only aware of one time she has gone to the bathroom while the sitter is here. That was recently when the sitter helped her get up and dressed after she had slept late.

I see this dependency in other small ways. She likes me to sit beside her when we sit in a booth at restaurant. The same is true at Casa Bella when we are seated at a table for six or eight. She wants to hold my hand more often when we are walking. She wants more instructions about what to do when toileting, brushing teeth, taking a shower, getting ready for bed. She hasn’t given up all signs of independence, but she is coming close to that.

She is forgetting a lot with respect to eating. She often points to the bread on the table at a restaurant and asks what it is. When I tell her, it doesn’t necessarily help. She is still a good eater, but she often fails to recognize the entree on her plate. She doesn’t recognize the salt and pepper at our neighborhood Mexican restaurant. Part of the confusion is that they are in the small Corona beer bottles, but the salt and pepper are clearly visible though not to her.

She also worries more frequently. Sometimes it involves a belief that she has an obligation of some sort. She worries about whether she has forgotten to do something. She also worries about people who have financial and health problems. The other night she talked a good while about some kind of disease that is being transmitted from mothers to their babies. She said there was a preventive medication that mothers can take. She told me she was planning to have herself tested. On the way to dinner last night, she was worried she might have done something to me that she shouldn’t. I assured her she hadn’t.

I also notice she isn’t as cheerful throughout the day. I think that goes along with her being tired. She does, however, have moments off and on during the day when she is very lighthearted and takes great pleasure in teasing me.

Taken together these things and many others are signs of the progression of her Alzheimer’s. We still have “Happy Moments,” but it is clear that I am unable to control everything. Some people suggest the disease always wins. In a sense this is true; however, I consider it a victory that we have been able to live happily, even joyfully, for so long. I intend for us to do as much as we can as long as we can, but I also recognize the reality that Kate’s decline means significant changes in our lifestyle.

No “Sleeping-In” Yesterday

Following two consecutive days of not wanting to get up, Kate awoke early yesterday and wanted “to get out’a here.” Except for believing she was in an unfamiliar place, she was in a good mood. For me, one of the good things about her wanting to get away is that it makes it easier and faster to get her up and dressed. We were at Panera before 10:30. She worked on her iPad but focused mainly on her blueberry muffin and wanted another. I told her we would be going to lunch in thirty minutes and asked if she could wait. She was agreeable.

The afternoon was our usual one. She rested a couple of hours. Then I suggested we look at a photo album of pictures taken when our children were pre-school age. We did that for a while before our daughter called. We had a nice conversation and Kate handled it well. After the call, we returned to the photo album, but Kate wanted to rest a little longer.

When I suggested our going to dinner, she didn’t hesitate getting up. That is normal. I don’t recall her ever having trouble getting up after resting in the family room in the afternoon. I wish I could say that about the morning when she is in bed.

She was confused about where she was as well as who I was but wasn’t disturbed. She asked my name and asked if we would be coming back for the night. She also said a few other things that made it clear she thought we were in someone else’s house.

At dinner something came up that made me mention our marriage. Kate was shocked. I was surprised at her reaction because we had been talking so comfortably about our relationship. It wasn’t simply that she was shocked. She couldn’t imagine how it was possible that she could have forgotten something like that. Fortunately, I was able to divert her attention. She was fine after that, but I felt bad. I intend to be more careful about that in the future. I think I have been unconsciously trying to keep that memory alive. Now I am beginning to believe that it may be time to let it go. I’ll just assume that she doesn’t remember and not try to remind her. There are enough incidental reminders when we browse through her photo books and interact with other people.

We had one of those middle-of-the-night incidents at 1:30 this morning. I woke up as Kate sat up on the side of the bed. I got up and went around to her side to help her up. She seemed wide awake and cheerfully greeted me like someone she might have recognized but not known. It wasn’t long before she said, “Who are you?” I told her my name but said nothing of our relationship. She didn’t ask.

I asked if she wanted to go to the bathroom. She didn’t. She asked about “the others.” I told her we were the only ones “here.” She seemed surprised but didn’t question me. I asked again if she would like to use the bathroom. She asked where it was. I told her I would show her. We usually hold hands, but she didn’t want to this time.

When we reached the bathroom, I stepped in and turned around to direct her to the toilet. She showed no interest in coming in. Instead, she was obsessed with what time she should “be there.” I never found out where “there” was, but it was important to her. I told her she didn’t need to be there until “1:00 tomorrow.” She was surprised and asked about today. I told her it was the middle of the night and that she would need her sleep to be ready for tomorrow. She went back to the question “What time do I have to be there?” We went through a repetition my standard answer and her standard question. A couple of times she asked what time she would have to leave, but her emphasis was on what time she had to be there. She couldn’t remember and kept asking.

Finally, she used the toilet. When she was finished, she noticed two pictures on the top of a nearby cabinet. One was a photo of my mom and me. She pointed to my mom and wanted to know who she was. When I told her who she was, she said, “I remember her. She is very nice.” Then she asked about my sister. I don’t have a sister but said she was fine. Then she said my sister was very nice and that she liked her. Before getting back to bed, she commented several other times about my mom and sister and how nice they were.

Once in bed, she was still wide awake for a short time. I tried not to encourage much talking, and she soon drifted off to sleep. She is still sleeping as I finish this entry. On the video cam I just saw her moving a few minutes ago, I will check on her and see if she is ready to get up. That would be nice. I don’t have Rotary today, and the sitter is coming at 1:00 rather than noon. If she gets up soon, we would be able to have lunch together. That would be a good way to start the week.

Consult with Kate’s Doctor

Yesterday, for the first time, I had an appointment with Kate’s doctor without Kate. It was a direct result of Kate’s recent desire to remain in bed rather than get up for lunch. Coincidentally, yesterday was one of those days. This was the fourth or fifth time in the past two weeks. Like all but the first time, she was relaxed and smiling. She seemed to be in a good humor. She just wanted to stay in bed. That’s what she did. I wasn’t able to get her up until after the sitter left just before 5:00 p.m., and she didn’t want to get up then but agreed after my coaxing. She had been in bed over twenty-one hours except for a brief bathroom break around 8:00 a.m. We did get out for dinner, but she went to bed before 7:30 and went to sleep quickly.

I interpreted the first incident as a case of depression. The others didn’t seem anything like that. She was just tired. On the days when she was willing to get up (ten out of fourteen), she was very tired, unsteady on her feet, and felt very insecure. These signs made me think that it was a part of the natural progression of her Alzheimer’s. When her doctor offered to see me, I was happy to accept.

It was a good visit and reminded me of why we have valued this geriatric practice for over twenty years. It is a partnership between our medical school and our largest hospital system. My mom and dad were the first of our family to go there in 1998. Since then, Kate’s mother, Kate, and my dad’s lady friend have all had physicians in the practice. We have always been pleased. There is virtually no wait time. In addition, the doctors spend a great deal of time with the patient and the patient’s family. They are especially good with dementia patients because the doctors always recognize them as the patient. In a situation like this it would be easy for a doctor to look at and speak directly to the family.

I was only there thirty minutes, but I achieved what I needed. I had sent a note of several pages describing Kate’s symptoms over the past few weeks. She had a variety of follow-up questions. I gave her my thoughts about the likelihood that Kate’s changes were just part of the natural progression of the disease. She agreed and handed me a piece of paper with a set of symptoms characteristic of the various stages of Alzheimer’s. They were expressed more specifically than what I had seen before. We focused on those for Stage 7.

7a. Ability to speak is limited to approximately a half-dozen intelligible different words or fewer in an average day.

7b. Speech ability is limited to the use of a single intelligible word in an average day.

7c. Ambulatory ability is lost (cannot walk without assistance).

7d. Cannot sit up without assistance.

7e. Loss of ability to smile.

7f. Loss of ability to hold head up independently.

Clearly, Kate doesn’t hasn’t reached any of these stages. She is losing her ability to talk as well as her ambulatory ability. Her doctor told me that Medicare eligibility for hospice begins around 7c above. I found that sobering. My impression from personal experiences is that the mention of hospice often catches caregivers off guard. It did when my mom’s doctor suggested it was time. She died a few months later. The same was true with my dad’s lady friend. She died less than a week after the doctor recommended hospice.

I don’t mean to suggest that Kate is that near the end of her life. My mom and Dad’s lady friend were much further into their disease than Kate is now. On the other hand, it is a sign that we are much closer to the end than I have sensed. This makes me think about something that I have mentioned before. I hope that Kate does not linger for long. She and I have shared the desire to die quickly. I don’t think we are unusual in that regard. I would love for her to be spared an extended period of time when she is completely bedridden or resting in a wheelchair.

Over the past few months, Kate has occasionally worried about, or at least been puzzled by, what is happening to her – why she can’t remember important things like her name or mine, being married, having children, or being able to remember how to do so many of the activities dialing of living. I wish she weren’t so self-aware. That is painful for both of us.

Ultimately, what I am concerned about is not within my control. All I can do is make her as comfortable as I can and provide her with as much pleasure as I can. It is almost 10:00 a.m. as I close this post. She is still sleeping. I really hope we will be able to get out today, but that’s another thing I may not be able to control.