Anxiety: Mine, Not Kate’s: Part 1

Some of you may have noticed that I’ve been quiet over the past week. I usually blame that on being busy, but that is only a part of the reason this time. Let me explain.

I should preface the story by saying that as an adult, I have been attentive to my health and wellbeing. As early as my freshman year in college, I was active in the gym. At that time, I was into weightlifting. I bulked up to 198 pounds, but muscle accounted for a lot of that. I put exercise aside the rest of undergraduate and graduate school. That extended another 5-7 years when I launched a 10-year career teaching college.

During my first two years, I felt that college teaching was not the best fit for me. Finding something else that was more to my liking and talents required time and effort. That proved to be stressful. I took up running. I continued that for about 10-15 years before having some hip trouble. Then I took up walking. Once my business was going in the mid-80s, I joined the Y and have continued to the present time.

I didn’t give a lot of thought to what I eat until Kate was pregnant with our first child. She had gestational diabetes. Her doctor put her on a high protein diet. I went on it with her. Since then I have been more careful about what I eat. Over the years, my waist had grown, but my weight has gone down. I am almost 30 pounds lighter than I was during my senior year in high school.

I mention all this to say that I take my health seriously. It’s one of my OCD tendencies. I am also very sensitive to the impact that caregiving has on one’s health. During the 9 ½ years since Kate’s diagnosis, I have made numerous changes to minimize or reduce stress. Notable examples would be reducing, then ceasing, travel and engaging the help of sitters for Kate three afternoons a week. Another big step was making a commitment to move to a continuing care retirement community the first part of 2021.

Over the past year, Kate has required much more of my time than before. That has been especially true since sheltering in place. These things have clearly raised my level of stress.

That brings me to the past week. Three weeks ago, I had a routine telemedicine appointment with my doctor. He mentioned that I ought to take my blood pressure readings periodically. I didn’t get around to it; however, last Wednesday, I felt under more stress than usual. That made me think about my blood pressure. Although I have been a regular blood donor and then a platelet donor, I hadn’t taken it at home in years. I located my BP monitor that night.

The next morning, I had that same feeling as I walked from the bedroom to the kitchen to get my breakfast. I took by blood pressure. It was about 135/85. That may not be high in general, but it was most unusual for me. I have been on BP medication for ten years or more and my readings have always been about 110-120/70-80.

I ate breakfast and then took my regular morning walk. I walked 50 minutes and took my BP again. It was about the same. By 11:20, I had taken several other measures, all were within normal levels.

Then I went to the bedroom to get Kate up. She didn’t want to get up. I got in bed with her and remained with her for almost 40 minutes. She still didn’t want to get up.

When I got up, I took another reading. This time it had jumped back to 138/85. I relaxed in Kate’s recliner and played some soft music. That dropped the reading to 118/78. I took seven other readings between 12:30 and 7:30. They were all normal.

Friday morning before breakfast, my BP was 151/78. That got my attention. That made me wonder if I might be in the early stage of a heart attack. I thought about the symptoms I could remember. I didn’t seem to have any of them. I went to the computer to look for others.

I still didn’t have any of the signs of a heart issue; nevertheless, I started to think about going to the hospital to be checked. Then I thought about Kate. I knew hospitals had not been allowing family members to be with the patient. I also knew that I couldn’t leave Kate alone. I called the agency that provides our sitters and asked if they would have someone right away. The regular sitter was scheduled for 1:00. They were stretched thin and couldn’t get anyone.

I also remembered that when you go to the cardiac emergency room, they keep you a minimum of six hours and want you to stay overnight. I asked the agency about someone for the weekend just in case. Then I called a friend to see if she could come over if I needed her. She was willing to do that. It turned out, however, that she was able to offer a better perspective on the situation. I should say that she is well-informed about health issues because of her work with the hospital. In addition, her mother cared for her own husband with dementia. I shared by BP readings with her, and she said she thought it looked more like anxiety caused by stress than an impending heart attack but said it would be better to hear that from my doc. I had already left a message at his office.

When I spoke with the doctor’s nurse, she said the doctor’s interpretation was the same as my friends. I felt the same way but also felt I should err on the side of caution concerning a possible heart attack. I scheduled another telemedicine appointment with the doc for the following Wednesday.

In the meantime, the agency was able to contact the sitter and asked her to come early. I had trouble getting Kate up and was concerned about leaving her but planned to do it anyway. I decided to take the afternoon to myself. I ran several errands. I spent the rest of the afternoon at my office relaxing, not working. I watched an interesting lecture and conversation with a couple who are Buddhists. It came at a good time for me in that I was trying to do exactly what they were recommending – living in the moment. As Kate has declined, I have been spending much more time thinking about the future and plans for our move. After returning home, my BP was normal the rest of the day. I felt much better when I went to bed that night.

However, that isn’t the end of the story. This is already a long post. I’ll save that for my next one.

This Morning

I looked at my watch. It was 5:29. I felt rested and decided to get up. Kate and I were lying very close together. She said, “Who are you?” I said, “It’s me.”

Kate:             “Are you a boy or a girl?”

Richard:        “A boy.” Kate (very calmly): “Well, I don’t think we should be in the same bed together.”

Richard:        “I was just about to get up.”

Kate:             “What are you going to do?”

Richard:        “I was going to get dressed and then have breakfast.”

Kate:             “That sounds good.”

Richard:        “It’s still early. You might want to sleep a little longer.”

Kate:             “Okay.”

Richard:        “I love you.”

Kate:            (chuckles).

Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

Alzheimer’s Has Been Testing Me For The Past Two Days: Part 1

Preface

I wrote most of this post yesterday (Saturday). That was 24 hours after I started. My intention was to write a brief summary of a special time Kate and I had Friday morning. I dropped those plans when other things took precedence. Although the morning had gone very well, the day turned out to be most unusual and very challenging. Even more unusual, was that it marked two days in a row that Kate faced problems that were especially difficult for me to address. A lot has happened. I won’t do justice to what occurred, but here’s the story in two parts, starting with Thursday.

Kate got up early on Wednesday and didn’t rest as much as usual during the day. Thus, it was no surprise that I needed to wake her on Thursday. At 11:00, I played music to wake her up gradually. After 30 minutes, I went in to see if she was awake. She wasn’t. That is unusual. Normally, she would be relaxing in bed while the music plays.

When I spoke to her, she responded and seemed sleepy but not disturbed in any way. I sat down on the bed beside her and chatted with her a few minutes. I told her it was getting close to lunch time. She wasn’t interested and said she would get up “in a little while.” We didn’t have any immediate plans, so I told her I would check a little later.

I checked at noon and again at 1:30. She still did not want to get up. She had a hair appointment at 3:00, so I tried again at 2:00. Still no luck. This time she looked somewhat disturbed and said, “Shhh” when I spoke. She pointed to the ceiling and very softly said, “See them?” I nodded and hoped that she wouldn’t ask me about “them.” She didn’t.

I mentioned that she had a hair appointment. She wasn’t interested. It didn’t matter if I cancelled, but I thought it might help her to get up and out. I encouraged her to go but decided not to push her.

I left the room to cancel the appointment. When I returned, she still seemed a little disturbed. I got in bed with her and put my arm around her. I told her I was there to help her with anything she needed and that I would protect her. We were mostly silent for almost an hour before she spoke. She sounded more awake. I told her it was after 3:00 and wondered if she would like to get up. This time she agreed. She was at ease again.

I’m not sure I understand why. I do know that “things” in her brain are changing all the time. She can change very quickly. Typically, that happens after she rests. My own guess is that her mind wanders a lot and she begins to have delusions and/or hallucinations, some of which trouble her. In the case of not wanting to get up, being patient often works. Comforting her also helps to shift my role from being the bad guy who wants her to do something she doesn’t want to do to that of a partner who really cares and wants to help. There are still a lot of unsolved mysteries for someone caring for a loved one with dementia.

Something else unusual happened that day. As I was helping her dress, she mentioned that she was going to have a baby “tomorrow.” She often thinks of herself as a much younger single woman and mentions that she wants to have children someday, so I didn’t think much about it until she said something else a short time before going to dinner.

We were looking at a family photo book when she said, “Where is the baby?” Things like this always raise a question for me, “What do I say?” The reflexive answer is always “What baby?” or “We don’t have a baby.” I didn’t think they were appropriate. She obviously thought we had a baby. I saw her stuffed bear sitting in a chair a few feet from us and said, “Oh, he’s right there.”

When I do something like this, I am never certain that what I decided will work, but I felt my options were limited. This time I was successful. I brought the bear to her, and she took it in her arms and held it lovingly like a new mother holding her newborn. We spent the next 15 minutes talking about the baby. At one point, Kate spoke to her (the gender changes frequently) and said, “I love you.” Then she looked at me and said, “Did you hear that, she said, ‘I love you, too.’”

It was close to the time I planned for us to leave for dinner. When I mentioned that to Kate, she said, “What about the baby? I can’t leave her.” Then I dug myself a hole and climbed in. I told her I knew someone who could come over and pretended to make a phone call to him. I didn’t think this through but assumed she would forget before we left. Not so. For the next few minutes she waiting impatiently for his arrival. Then she got worried about leaving the baby. I told her he was a nurse with lots of experience, but she continued to be concerned.

My next attempt to address the situation was to tell her I could call him back and ask if he could meet us at the restaurant. She was fine with that. Once again, I depended on her inability to remember what we were going to do before getting to the restaurant.

She continued to hold the bear in her arms all the way to the restaurant and at least once or twice said something about our meeting the nurse. Fortunately, she completely forgot everything but her baby before we arrived. We got out of the car. She cuddled her bear in her arms, and we walked in.

The hostess took us to a table with just two chairs. I asked if she could bring us another just in case Kate wanted to put the bear in a chair while she ate. She brought one, but Kate continued to hold the bear in her arms. I wondered what she would do when the food arrived. I soon found out. She wanted to put the bear down but didn’t know where. I got up and took the bear and placed him in the third chair where she could see him. That worked. We had a good dinner. When we were through, I picked up the bear and gave him to her, and we walked out to the car. There were no more surprises that day.

(See the post above for Part 2.)

 

Change is Ever Present, But Some Things Remain the Same.

Much of my recent posting has focused on the changes occurring in our lives. That is true, but I don’t want to mislead you. Some of the best things are still with us. I can sum it up by saying this. Kate continues to be the same kind, thoughtful person she always was. As a result, the strength of our relationship hasn’t diminished in any way. In fact, I would say it is stronger than ever.

Last week, I watched a video lecture by David Brooks recorded during his visit to Chautauqua in 2018. A section of his talk dealt with love and referenced the following quote from Corelli’s Mandolin by Louis de Bernieres.

Love itself is what is left over when being in love is burned away. And this is both an art and a fortunate accident. Your mother and I had it. We had roots that grew toward each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were part of one tree and not two.

I think this applies to our relationship as well as most other successful marriages including those of Kate’s and my parents. We had a good marriage before Alzheimer’s, and our roots “grew toward each other.” Now I have discovered that we are “part of one tree and not two.”

There are a number of reasons “Living with Alzheimer’s” has been less stressful for us than for many others. The nature of our relationship has to be one of them, and it has not deteriorated. That could change at any time. Alzheimer’s has changed our lives significantly, but I remain optimistic.

There are many illustrations of the way we have handled the trials accompanied by this disease. Let me mention several that have occurred in the past week.

One night early last week, I had just gotten out of the shower and was about to take a seat in a chair on my side of the bed. This is a relaxing time of the day for me. Kate was sitting up in bed while watching a YouTube video of Rachmaninov’s Piano Concerto No. 2. I assumed she was more engaged than usual because she was sitting up. Normally, she is lying down with her eyes closed and listening. Before I could sit down, she motioned to me to join her in bed. It was about 45 minutes before I would normally go to bed, but I got in bed.

It turned out that she was experiencing two conflicting emotions. She was enjoying the music, but it was also a moment when she was disturbed by not knowing “anything.” She wanted my hand and held it firmly as she leaned against me. I felt it was another time when talk was less important than simply being with her. Within 10-15 minutes, her anxiety was gone. We watched the entire concerto, and she wasn’t sleepy. We followed that by watching a performance of Tchaikovsky’s Piano Concerto No. 1. We were much later getting to sleep than usual but it was another case in which music and the comfort of our relationship solved a problem.

One morning two days later, she woke me around 5:00. She had apparently had a dream in which she had some obligation that morning. She wanted to know what time she had to be there. I told her I didn’t know of anything that she needed to do that morning and that she could relax. For a very brief moment, that satisfied her, but then she asked again, and again, and again. Finally, I suggested that I put on some soft music. I have a variety of music for times like this and turned on the audio. Then I put my arm around her and held her for over thirty minutes. During that time, she relaxed and forgot all about her obligation. She wasn’t asleep but at ease, and I got up for the day.

As she grows increasingly dependent, her desire to be with me seems to increase as well. The past few days she has talked about liking to be with me. On at least one of those occasions, it followed an afternoon with the sitter even though I was in the house most of the time. Before the sitter arrived today, I mentioned that I was going to the grocery store. She told me she didn’t want me to leave. I told her I wouldn’t be gone long and wasn’t going to leave right away but would be in the kitchen taking care of a few things. She accepted that, but the look on her face suggested she didn’t want to.

Yesterday morning was one of those times when she didn’t recognize me as her husband or know my name, but she asked to hold my hand. She said she didn’t really need it, but it made her feel better. She wanted to go home, so we went for a ride in the car. It wasn’t long before she said, “I don’t know how he does it.” She said a few related things, and I asked who she meant. She looked at me and said, “You.” This was far from the first time she has referred to me or herself in the third person. When we returned home, she wanted to tell me something but couldn’t express it. I’ll never know exactly what it was, but I got the impression she wanted to tell me what it feels like not to know anything. I don’t know that I would be able to express it either. I do know that she hasn’t forgotten me as a person whose company she enjoys and on whom she is very dependent.

As an aside, I think she has remembered my name and that I am her husband more often as her dependence has increased. When I got home to relieve the sitter two days ago, the sitter told me Kate had asked about “Richard” off and on the whole time I had been gone. Interestingly, while we were eating lunch today, she asked, “Where is my husband?” several times. We had been talking, but there were moments of silence. She apparently looked at me but did not recognize who I was and felt uneasy. Yes, changes are occurring, but some very important things remain the same. Our relationship, music, her photo books (especially the “Big Sister” album), and The Velveteen Rabbit are among them.

Stunned by a Conversation

You might think that by now nothing Kate does could surprise me, but a conversation she had with her sitter yesterday did just that. A few times Mary has mentioned that Kate has been talkative, but this was the first time I was home to get a better idea. I was stunned, not that she was talkative but that she controlled the conversation so well.

Since Kate normally wants to rest after lunch, I assumed that she might nap after Mary arrived. That proved to be wrong. The two of them began to talk as I went to the kitchen to work on my computer. I could hear their voices but wasn’t able to understand what they were saying.

I watched a video of a lecture at the Chautauqua Institution. When it ended an hour later, they were still talking. Kate was clearly taking the lead. The way she asked her questions wasn’t just like they were two friends in conversation. It reminded me of a sympathetic journalist conducting a conversational interview, giving her own thoughts about the issues they discussed.

Twice I walked close to the doorway to get a better idea of what they were saying. I heard Kate ask her about her husband and their relationship. She also talked about our relationship. Kate raised the issue of values, and that led to an exchange over relationships with other people. At one point, Kate asked her about her church. I have no idea what else they discussed, but the total time they talked was an hour and fifty minutes.

I didn’t listen long. It was still hard to follow everything they were saying, but I was struck by Kate’s command of the conversation. She would ask Mary a question, listen to her answer, ask follow-up questions and then express her own thoughts. Kate and I have had a number of somewhat similar conversations. During those, Kate has done the talking, and I was a facilitator. In addition, much of what she has said to me was based on a delusion. Yesterday’s conversation was back and forth more like two friends having a pleasant conversation rooted in reality rather than a delusion. I suspect a person overhearing it might not have recognized that she has Alzheimer’s and certainly not in the last stage. It took me by surprise. I wish I could have heard more clearly. I know she stumbles over her words when she talks. She must have done that, but I didn’t detect any sign of it.

It made me think about the difference in the relationship that she and I have compared to her and Mary. Our relationship is dominated by my role as a caregiver. She looks to me as the person in charge who has the answers to her questions and knows what to do when she is in doubt. It may seem strange, but I think she sees Mary as more of a friend than a caregiver. I like that.

To use an old expression, to me that makes Mary “worth her weight in gold.” Kate no longer has any close friends. They have either died or moved out of town. We get together with other people (at least until covid came along), but couple relationships can be quite different than getting together with a close friend. It is harder for Kate to play a significant role in group conversation. Part of that is because I am more of talkative than she is and generally take the lead. Along with that, Kate looks to me to do just that because it takes the load off her.

I have seen a number of other situations in which Kate has been able to converse easily with another person. She handles herself well and did that with Mary yesterday. She is not always in the mood to talk. It’s been almost three years since Mary became her Wednesday/Friday sitter. To the best of my knowledge yesterday was one of only a handful of times when that coincided with Mary’s being here, but I hope she will have more conversations like this in the future.

So, What’s Going On?

Some of you may have noticed that yesterday’s post came after a week of silence. That is the longest such period since I launched the blog 2 ½ years ago. Because of my regularity in the past, I know some of you have wondered if everything is all right. I am happy to report that Kate hasn’t had any special problems. In most ways, she has had a good week. She does experience more delusions and hallucinations than she used to, but they haven’t increased in the past seven days.

The real answer is that I have been more occupied than usual. Our children and grandchildren were in town Thursday through Sunday to celebrate my 80th birthday. We had established this date before Covid-19 entered the picture. We did our best to maintain the appropriate physical distance recommendations but were together a lot during that time.

Prior to their visit, I began to make preparations for the move. Mostly, that has involved getting the house ready to be put on the market in December or January. We’ve been in the house 23 years this month, and there are several things that require attention. The biggest is eliminating a leak in the swimming pool. After a year of searching, we found it two weeks ago. I asked that they not begin until after the birthday celebration. They will be here next Tuesday. In addition, I have also been communicating with a number of people about gutter and woodwork repair.

I also felt a need to take action on the preparations for the move itself. I know someone in connection with my work with United Way whose business is helping seniors who are downsizing. She is also helping a few others who are moving into the same building we are. Several times, I had spoken informally with her, but we finally met at our house earlier this week. She can handle almost everything in connection with a move. For us, she will probably focus on the logistics of the move itself.

The first step in getting ready is to identify what we can take with us. I have contacted the person Kate worked with on the interior decoration of our present home. She is going to meet me at the house next Tuesday. In advance of that, I have been carefully reviewing the floor plan of our apartment. That has given me a general idea of what I can take with me. I will work with our decorator to get more specific. Then we well develop a plan to get rid of the rest.

All of these things together with my responsibilities for Kate have just made it more difficult keep up with my regular posts. I hope that won’t continue. Having set things in motion, I will develop a plan that I hope will be carried out gradually. The people I’m working with will play a large role in making the move easier for me. I also hope we won’t move until February or March. I know there will be unforeseen bumps along the way, but I am currently optimistic. As Kate often says, “We’ll see.”

Food Art

6:45 This Morning. The frying pan was ready, and I was about to put in the eggs. I heard Kate say “Hey.” I went to the bedroom, but she didn’t recall saying anything. I told her I was about to have breakfast and to call me if she needed anything. Just as I reached the kitchen, she called again. I went back to her. She didn’t remember calling me. This happened several times. She would say “Hey” or “Hello,” and I would go to her.

The last time, I asked her if she would like breakfast. She said she would. Before getting up,  she didn’t know who I was and was somewhat suspicious of me. When she asked who I was, I told her. That didn’t appear to relieve her, but she didn’t protest when I helped her out of bed and took her to the bathroom. She held my hand all the way, and we went through our normal bathroom routine. Then I helped her dress.

We went to the kitchen where I gave her some juice and a bowl of blueberries while I cooked the scrambled eggs I had intended for myself. Then I cooked another batch for me. She eats very slowly, so I finished long before she did. As it turned out, she never finished. Her aesthetic interest in the meal took precedent over her hunger.

I first noticed that she had poured the blueberries from the bowl to the plate with her eggs. I didn’t think much about that. She often transfers food from one plate or bowl to another. I think I recently commented on her pouring her juice into a bowl with blueberries and strawberries.

She didn’t stop there, however. For the next 30-40 minutes, she arranged and rearranged her food, the locations of the plate, bowl, napkins, as well as her fork and spoon. She very meticulously picked up one or two blueberries at a time and put them in various places on and off her placemat and the table around it. She wasn’t satisfied with moving just the blueberries. She also picked up bits of the scrambled eggs and carefully placed them on the table and on a napkin.

Midway through her creation, I asked if she would like me to take a picture. She did. I thought that would be the end, but she continued to reposition the items. I took two other photos although they did not turn out to be the last arrangement.

When she was finished, I started to pick up the plate with the eggs and blueberries still on it. She stopped me and said, “They will come in with some money and take it.” I didn’t ask her to explain.

We got up from the table and walked into the family room where I picked up The Velveteen Rabbit. I had only read the title before she wanted to rest. I went back to the kitchen and cleaned up the art. Now I am sitting across from her while she sleeps. She really does need the rest.

Off and she has spoken a few sentences as though she might be dreaming and talking with someone. Once or twice, she looked up at the ceiling and appeared to be talking with someone. And, just a moment ago, she asked who I was. Except for a few moments before she got up, she hasn’t seemed disturbed by her confusion. In fact, she has been a little playful with me. After asking who I was, she asked if I was a girl. I told her I was a boy. She asked my name. When I told her, she said, “You’re a girl. Your name is Carol.” Then she chuckled.

Happy Moments and Challenges

I often fear that when I post stories of the more challenging (troublesome? Disturbing?) experiences Kate and I have, you may feel our lives have become gloomy. Similarly, when I post our good ones, I fear that I am failing to convey the trials we face. The truth is that both the good and bad are happening, sometimes in very close proximity. I want you to know about both. Beyond that, I want you to know that our Happy Moments continue to outweigh the more difficult ones.

This morning (See below.) we have had contrasting experiences, and it’s only 9:55. It began when I woke up a couple of minutes past 6:00. As I started to get out of bed, Kate said something to me. She seemed wide awake . . .

The paragraphs above were written about 9:45 Wednesday morning. It is now 2:58 Wednesday afternoon. Since then I have been occupied with Kate, some household chores, and checking email. In a way, the break was fortuitous in helping to make my point about the mixture of experiences we have during the day.

Let me pick up where I left off. She seemed wide awake when I started to get out of bed. More importantly, she seemed perfectly at ease although she did ask me what she should do. I said that it was a couple of minutes past 6:00, and she should probably go back to sleep for a while. That satisfied her, and I went to the bathroom.

Moments later I heard her say, “Hey.” I opened the bathroom door and saw her standing there. She needed to use the bathroom. As is often the case, she was very dependent on me. Since she was up so early and cooperative, I suggested it would be a good time for a shower. She didn’t object.

When we got out, I started to dress her. She wanted to rest before we could finish. That seemed like a good thing as I hadn’t done anything to get myself ready for the day. I left her in the bed while I went to the bathroom, dressed, and fixed breakfast.

I had just put my breakfast on the table when I heard her call. I took my plate of scrambled eggs with me to see what she wanted. She was ready to get up. She was in a good humor, and I had no trouble getting her ready. While helping her, I ate my eggs and gave her a bite. She loved it.  I was glad because that gives me another breakfast alternative for her.

She was in an unusually cheerful mood when we left the bedroom for breakfast. She was excited about the flowers and trees in the back yard. At breakfast, she was very talkative. Everything pleased her. The sun was shining brightly, and she loved looking out the kitchen window at all the “green” in our neighbor’s yard. She raved over the apple juice, blueberries and strawberries, and her eggs. We were off to a great start. I had already thought about writing a more upbeat post, and she was providing all the material I needed.

After breakfast, we went to the family room where I picked up The Velveteen Rabbit, and we sat down to read it. She has never enjoyed it more, but she did look tired when we finished. I asked if she would like to rest. She said she would. That’s when I got my laptop and sat in a chair across from her to write this post.

She didn’t rest long. She began speaking to someone who had apparently appeared in a dream. When she started to get up, I walked over to her. She greeted me warmly as though I were a guest and not her husband. I asked what she wanted to do, and she said she was going “over there” and pointed to the back yard. It is most unusual for her to go out to the patio and back yard. I was pleased.

We spent about fifteen minutes walking around to see all the plants that she admires from inside the house. She was excited to see everything up close. It was another high point of the day.

It was time for lunch when we came back inside. I called in a takeout order from a place nearby. Everything went well until near the time we finished eating. She seemed a little disgruntled and wanted to go home. I was hesitant to do that since the sitter arrived only a few minutes before. I told her we were at home but quickly recognized that wasn’t going to work. I told the sitter I was going to take her home. She remained at the house while we took a 20-minute drive.

Until then, our drives “home” had worked well. That wasn’t so  that day. Before leaving the house and in the car, Kate asked several times if I knew where she lived. Each time, I assured her I did. She seemed quite suspicious. Then as we came within a block of the street where I was to turn for our house, she said, “This doesn’t look right.” She repeated this after I made the turn. When she saw the house, she didn’t believe it was her house. She was hesitant to go in and insisted on my going in first. It seemed to me that she recognized the house as familiar but knew it was not “her” house. Since this was the first time she did not accept “our” house as “her” home, I wonder what will happen next time I try the same thing. (I got to find out yesterday afternoon. It went well.)

When she saw Mary, she didn’t recognize her at all; however, she gave her a warm welcome. I started to go to the kitchen, but she wanted me to stay with her. I sat beside her on the sofa and picked up The Velveteen Rabbit again. She shrugged but listened. She didn’t respond at all the way she usually does and had earlier that morning; nevertheless, I could tell she was following the story. She got tired before I finished and put her head down on the pillow. I finished the book while she rested. I went to the grocery store and back. I was at home the rest of the time the sitter was here.

After Mary left, I decided we needed a boost for the day. I took Kate to Casa Bella for dinner. We had a nice meal and returned home for the night. All was well. It wasn’t our best day, but it had some very good moments. I felt good.

Emotional Times

I always assumed that the last stage of Kate’s Alzheimer’s would involve sadness for me. That is happening now although it is only periodic. It is minimized by the many happy moments we continue to experience. In addition, there are times for which neither happy nor sad seems to be the right word. Those are tender moments when each of us feels a deep sense of love for the other as well as (at least on my part) the recognition that time is running out.

Sad moments for me occur when Kate is disturbed by her lack of memory and any sense of where she is or what she is supposed to do. Most of these experiences are in the morning and have become almost routine. I know how to comfort her, and most of them are not as serious as others. For that reason, I don’t usually feel sad.

Several days ago, she had an experience that was very upsetting to her and to me. It was definitely a sad moment and not one that happened in the morning. She had finished resting in the family room. I looked over at her and saw that her eyes were open. The expression on her face was one of concern. I asked if I could help her. She said yes, and I walked over to her. She wanted to go to the bathroom.

On the way, she continued to act as though something was troubling her. What I initially saw as concern wasn’t about getting to the bathroom. While seated on the toilet, she tilted her head down and held it with her hands. I don’t remember exactly what she said, but she was in tears and distraught. She said, “I feel like I am not alive. I don’t know anything.”

This was as sad a moment as I have felt. I focused on comforting her. I said, “I know you’re not yourself right now, but I want you to know I am with you and will always be with you.” When we finished in the bathroom, I took her to the family room where we took a seat on the sofa. I told her I had something I wanted to show her and picked up a three-ring binder of information about her and her family. I reminded her that she frequently asks me to “write that down for the book” she plans to write about her family and told her that the binder contained some of the information she had wanted.

She responded quickly. Offering comfort and diverting her attention are a powerful combination. I don’t know that it will always work, but, so far, it has.

Saturday morning, we shared a tender moment. I put on a Judy Collins album before trying to get her up. It was still playing when we got to the kitchen to take her morning pills before leaving for lunch. As usual, my focus was seeing that she took her medicine and wasn’t thinking about the music. Collins was singing “Amazing Grace.” The music caught Kate’s attention. She stopped taking her pills and commented on how beautiful it was. With tears in her eyes, she grasped my hand and held it tightly. I put my arms around her. She began to cry, and so did I. We stood there, arms wrapped around each other and enjoyed the moment.

As I reflect, I don’t believe either of us was simply responding to the music. Like many people, we love the song, but we have never reacted to it this way. I believe it was a catalyst that heightened our existing emotions. Music can do that. That may be especially true for us because we have devoted so much of our attention to it since Kate’s diagnosis.

This an emotional time for us. She is struggling with the symptoms of her Alzheimer’s. It is frightening not to know anything. It’s also an emotional time for me. I’m happy when she is happy, but the corollary is that I suffer when she suffers. In addition, I experience something she can’t. Although I can’t predict the future, but I am very mindful that our time together is rapidly diminishing. Music can move us anytime, but it is especially powerful when our emotions are on “high alert” as they are now. I am sure it will continue to bring us comfort in the days ahead.