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More on Kate and Sleep/Rest

Three months ago Kate wouldn’t get up on a day when the sitter was coming. She was still in bed when I left and also when I arrived home. It was about 4:15 when she finally got up.  There have been at least two other times she has slept until late in the afternoon, once until after 5:00. There have been several other days when she has not wanted to get up but ultimately agreed to do so.

When I tried to get her up yesterday, she was resistant. Pushing her never works, so I decided to let her rest a little more. After several unsuccessful attempts, I decided to encourage her. I told her I wanted to have lunch with her and hoped she would get up. That didn’t work at first, but, with a little coaxing, it did.

It was running close to the time for the sitter’s arrival. I put in an online delivery order from Panera. Kate was quiet but enjoyed her lunch. We were still eating when Mary arrived. When we finished, I took Kate in the family room and showed her several of her photo books she might enjoy. Then I prepared for a conference call.

While I was on the call, Kate went to sleep on the sofa and was still resting when Mary left. I went to the sofa and sat beside her. She continued to rest. I told her it was pizza night and asked if she would like to go with me to pick it up. I didn’t get a response. I decided to let her rest a few more minutes.

In fifteen minutes, I tried again without success. She responded the same way she has done when sleeping in the bed in the morning. She was good-natured and said, “I’ll get up in a few minutes.” The problem is that she never does.

I decided to cook lasagna. No, I didn’t make it. I bought it earlier in the week at a takeout place that has usually has two or three frozen dishes they prepare for times like these. Before eating, I asked if she would like to join me. She didn’t, so I went ahead. I fixed a salad (spinach and arugula with blueberries, tomatoes, and slivered almonds) to go with the lasagna. It was an unusually good meal.

After eating, I told Kate is was time to get ready for bed. She didn’t want to move and asked if she could sleep right there on the sofa. I told her that she needed to get to the bathroom and put on her night clothes and then it would be easier to get in bed. I was surprised when she agreed. She was in bed shortly after 7:30 and quickly went to sleep. She was asleep when I got in bed and slept through the night. I expected her to get up early this morning, but she didn’t make a sound when I got up. She is still sleeping at 9:15.

So, what’s going on? As so often happens, I don’t know. I know that it was a year ago that her sleep pattern began to change. Over that time, it has been less predictable than it was before that time. She has clearly been more tired than she used to be. During the past three months that has increased, especially in the past 3-4 weeks. She is not on her feet much before she wants to rest. That often occurs when I give her a tour of the house. She enjoys herself but gets worn out and wants to sit down. As I have speculated before, this may be a natural process as her body begins to shut down. Her doctor seems to think that might be it. Whatever it is, I suspect the fact that she has resisted any exercise must have exacerbated the problem. The good news is that she has not seemed disturbed or frightened. I am eager to see what happens today.

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Living in Kate’s World of Delusions

Kate has experienced delusions for several years, but they occur more frequently now, especially since we have been homebound. Prior to my experience with Kate, I was prone to think delusions were all bad. I am discovering that is not so. Most of Kate’s are benign. They are harmless, some puzzling, but most quite interesting and reflective of her personal values. A few have been disturbing. These have involved a belief that no one likes her, that she has done something she believes was wrong, or that she has some obligation for which she is not prepared. The most frequent delusions involve projects designed to help those who are underprivileged in some way. Often, they involve programs to educate women in third-world countries but also in the United States.

During the past 36 hours, she has had two separate but related delusions that led to unusual conversations. They were very one-sided with Kate playing the dominant role. In fact, soliloquy might be a better word than conversation. The first occurred Wednesday night when I got out of the shower. She began a conversation that lasted almost a full hour and a half during which I said very little. I played the role of facilitator by simply listening, expressing agreement, or asking questions that would lead her to say more.

The second conversation occurred yesterday morning at breakfast. Yes, I said, “Breakfast.” It was another time she had gotten up early before I had fixed my own breakfast. I took the opportunity for us to eat together, never expecting another lengthy conversation. This one was an hour.

Both of them were interesting and involved a school. In each case, she did not know my name and had not recognized me as her husband. That was true all day Wednesday and a large portion of the day yesterday. It was clear Wednesday night that she was talking to me as though I were a potential candidate to join their program. Unlike other similar delusions, she didn’t say much, if anything, about the students. Her focus was entirely on the underlying values of school for those who worked (volunteered?) there. It was a diverse workplace where everyone respected the talents and personalities of the others.

Like another conversation we had several weeks ago, she responded to me just the way she would have if she had known my name and our relationship. Like the previous one, she repeatedly referred  to her husband and used my name each time. She kept saying, “I wish Richard were here. He could give you a better idea (tell you more, etc.).” While she didn’t say much about the students, it was another example of a program designed to provide education to people who might not otherwise have gotten it.

The length and complexity of her conversation was a striking contrast with most of her delusions. She talked non-stop, though in a relaxed style, for a full hour and a half that night. Several times I suggested that we continue the conversation the next morning. She agreed the last time when I mentioned wanting to think about it and talk in the morning.

I never imagined that she would start a similar conversation the next morning, but that’s what happened as we sat down for breakfast. I was never sure that it was an extension of the previous night’s conversation, but it was strangely similar in length and complexity. She also periodically mentioned her husband (me) by name. This time it wasn’t clear if I was a candidate for a position. It sounded more like I was someone who had expressed an interest in what she was doing.

Conversations like these are rooted in delusions brought about by Alzheimer’s; however, they also involve powerful expressions of Kate’s feelings and values. I find that comforting. It reminds me that the real Kate is still here.

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Awareness of Vocabulary Loss

On many occasions I have mentioned Kate’s awareness that something is wrong with her. That is most evident when she is disturbed over not being able to recognize her surroundings or know who she is. I have also mentioned that her vocabulary is shrinking. Many everyday words are rapidly disappearing.

Until this past Monday, I hadn’t noticed any sign that she recognizes the latter change. We were in the bathroom brushing her teeth when I used a word that she didn’t understand. I don’t recall what it was, but it was something ordinary. I didn’t think much about until she said, “I like the way you talk.” I told her I thought I talked the way she does. She told me that I know more words than she does. She said it matter of factly without any sadness or great concern. I feel good about that, but it was a reminder of how much self-awareness she retains. She has far more insight about herself and others than I give her credit for. That awareness may well account for those moments when she seems depressed but can’t explain what’s wrong.

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Kate is Like a Child.

I suppose everyone has experienced and been delighted by the innocence of children. As a youth and during most of my adult life, I didn’t give much attention to children except for our own and those of family and friends. As I aged, I developed a greater appreciation of the gifts they bring us. They haven’t developed the sensitivity adults have about “proper” behavior. They behave and speak as if it only matters to them and no one else. They express what they feel so naturally.

Kate has always been interested in children. The nineteen years she served as our church’s volunteer librarian were especially fulfilling for her. Much of her work involved children either directly or indirectly. She would have kept her responsibilities as librarian had it not been for her Alzheimer’s. She realized before her diagnosis that she was no longer able to fulfill her position the way she thought she should and resigned.

During the past nine years, her interest in children has become a fascination for her. She enjoys watching them wherever we go and often speaks to them and compliments the parents for having such beautiful children. That has further increased my own appreciation of them.

That leads me to think about Kate. For the past three or four years, she has been somewhat more childlike herself. Increasingly, she behaves with me much like a child with her parent. That is expressed in several different ways.

The most typical example is her wanting to show me little things she has done. She seems proud of herself for what she is doing and wants my recognition. She likes me to watch as she pulls strands of her hair and runs her fingers between each of her toes to get “them” out. She asks me to look at her as she picks her teeth with her fingernails thinking there is something is stuck between them. She is sensitive about her skin and daily runs her fingers across the skin of her arms and legs and shows me her hand and says, “See them.” I try to pay attention and reinforce her belief that she is doing something good.

Above all, her most childlike qualities involve her expressions of enthusiasm for things she enjoys. Her pleasure over the beauty of flowers, trees, shrubs and house plants is the best example. The arrival of spring has brought daily moments of pleasure. She loves to share her enthusiasm with me and sometimes says, “Look at the pink (green, yellow.) “Do you see it?” I translate her question as “Won’t you share this beautifuI moment with me.” I never tire of seeing how excited she is almost every time she walks in our family room. That is particularly true when she sees the two small pots of African Violets. She also takes time to admire the four Poinsettias that have survived the winter. Occasionally, she sees the hydrangeas at the far end of the room and walks over to get a closer look. If she turns around after admiring them, she sometimes is surprised to see the Poinsettias again. I don’t ever recall seeing any sign that she is aware of having previously seen them or any of the other plants prior to that moment.

The newest source of pleasure involves her food. This has only occurred since being homebound. It seems surprising because the meals I prepare are very simple and most of our takeout meals aren’t the same caliber of those we have eaten at the restaurants. She rarely leaves anything on her plate. The exception would be the skin of apples and tomatoes as well as the crust of her bread.

She always wants to share her pleasure with me. It never dawns on her that her entrée and mine are almost always the same. Even when I tell her, she often says, “Try it. You’ll like it.” and passes her fork with a sample for me to taste.

It’s not just that she likes the food. She is animated and talks about it during a large portion of our meal. She liked her meals when we were eating out, but it was usually a special dessert that she talked about most. I never thought she was at all inhibited in a restaurant, but, perhaps, she feels even freer to talk when it is just the two of us at home.

Another possibility is that it is simply a side effect of her Alzheimer’s. She has forgotten most of the foods we eat. For a while, that was limited to a few things like pizza and pepperoni. Dr. Pepper has always been her favorite drink, and she wouldn’t drink the diet version. Now I only buy diet. It doesn’t make any difference even when she is looking at the bottle from which it was poured. She has also almost forgotten the name Dr. Pepper except to recognize it when I offer it to her. She raves about how good it is with almost every sip and then asks, “What is this?” We go through this multiple times during a meal. I suspect that is happening with all the other items on the table. As far as she knows, what she eats and drinks is always new and always good.

Some of you may be thinking, “How sad that she no longer recognizes the names of her favorite things.” You would be right. It is sad. It can be especially painful for me as her husband. How I wish I could spare her from these things as well as those that are to follow. My only way of adapting is to recognize that it is totally out of my control. All I can do is try to keep her safe and happy. I pour all of my energy into that. I’ve learned to live in her world and to be joyful that she can still enjoy life. I am also aided by the fact that she is so dependent on me. She is like a young child, she can do very little on her own. She needs help with everything, and I am willing and able to give it.

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Does Kate Still “Know” Me?

It’s been almost two years since Kate first asked my name. I mentioned it to a friend in Rotary who has been very active in our club’s support of a project to raise funds for Alzheimer’s research (CART, Coins for Alzheimer’s Research and Treatment). A week later he made an announcement encouraging club members to contribute and mentioned what I had said. He conveyed how devastating that must have been for me.

While I would not have used that word, it was a moment that took me aback even though I knew that it would come eventually. I also knew that this was just forgetting my name in one moment and that at other times she would recall. I took it as a sign that the day might be coming when she would completely forget who I am and wondered how long that would be. At this point, I still don’t know. That’s good news because it means she continues to remember off and on both my name and that I am her husband. In fact, in the past few months, she has called me by name more than she did a year ago.

There is even more good news. Although it is common for her not to remember my name and relationship, she almost always recognizes me as someone who is familiar and with whom she feels comfortable. She trusts me. Two incidents occurred yesterday that are good illustrations.

At 8:30 yesterday morning, twelve minutes into my walk, Kate sat up in bed. I went to her. She was ready to get up. Although she expressed her general unfamiliarity with the location of the bathroom and what to do when there, she did not appear to be disturbed at all. I took her hand and walked her to the bathroom.

For months, she has asked what to do when I show her the toilet. Recently, I started telling her to pull her underwear down and sit on the toilet, and everything would come naturally. Once seated she understands I was right and sometimes, as she did yesterday, seems amazed that “the water just comes out.”

After using the toilet, she asked, “What next?” I told her it would be a good time for a shower. She didn’t hesitate and just asked where and what to do. I turned on the shower and led her inside. She was very comfortable with me and preferred that I take the lead in bathing. The was the first time she just stood there and turned around when I asked so that I could reach all around her.

As we walked out of the shower, I said something I don’t often say, “Do you know who I am?” She said, “No, who are you?” I gave her my name, and we continued to the bedroom where I helped her dress. Then she lay down to rest. I believe that during the time from getting up until that moment she didn’t know my name or our relationship, but she obviously trusted me. Of course, that could have been because I was the only one available. I believe, however, that her comfort level expressed the nature of our relationship and that she would not have responded the same way with a stranger.

The second illustration occurred late yesterday afternoon and early evening. Following her afternoon rest, she sat up and said she was ready to eat. I told her it was a little early for dinner and suggested she have a snack to tide her over until then. We went into the kitchen where I gave her a banana. She didn’t remember what a banana is but was delighted when she took the first bite.

It was clear that she also didn’t remember we were in our house, so I decided to give her a tour of the dining and living rooms. We must have spent ten minutes in the dining room. I am embellishing my commentary even more now. I pointed to the chandelier (never remembers what a chandelier is) and explained that was from her parents’ home. I said, “Can you picture your mother and daddy looking at different fixtures and finally deciding this was the one they believed was best for their new home then under construction. Her mother was quite a cook and loved to entertain. I reminded Kate of all the celebratory occasions and specific family members that would have eaten under the light of that chandelier. She loved the tour, but all the family items I showed her never made her recognize she was in her own home.

When we entered the living room, she was tired of standing and asked if she could sit down. We sat on the sofa that had been in her parents’ living room. I reminded her of the times we had sat on that sofa and sneaked a kiss or two after her mother and daddy had gone to bed. I didn’t yesterday but sometimes I also remind her of the doorbell that her parents had installed for her grandmother who stayed with them in the winter. Her mother rang the doorbell as a signal when it was time for me to leave.

Kate was tired and asked if she could rest on the sofa. I told her that would be fine and that I would get my laptop and sit with her. She rested about forty-five minutes before asking when we were going to eat. I told her we could order takeout from Chalupas right then.

As she got up, she asked me where I live. I said, “Right here with you. This is our house.” She looked at me skeptically. I didn’t say anything more. Her conversation in the car going to and returning from the restaurant made it very clear that she didn’t know my name or our relationship. I responded to one of her comments by saying, “I hope you feel you can trust me.” She said, “I do. You’re a nice guy.” I said, “I’m glad to hear that because I like being with you.” She said, “I like being with you.”

We ate our meal and then went to the bedroom where she started to work on puzzles but became frustrated with the first one. I gave her a couple of photo books to look at while I watched some of the evening news. She wasn’t interested. I asked if she would like to get ready for bed. She was. She was very cooperative in taking her medicine and putting on her night clothes. She went to sleep but woke at least for a minute or two when I got in bed an hour and a half later. She responded to me warmly just as though she knew I was her husband. Did she? I don’t know. I do know that she tapped me on the arm early this morning. I looked at my watch. It was 4:44. She said, “I love you.” I said, “I love you too.”

Does it really matter whether she knows my name or that I am her husband? She knows “me.”

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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.