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A Happy Day

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

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

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

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

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

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

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

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

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

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

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

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Sleeping In Again

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

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

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

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

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

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

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

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

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Busy Days with “Unintended Consequences”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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How Are We Doing?

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

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

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

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

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

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

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

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

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

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

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Minor Events Seem Bigger in Times Like These

In my last post, I noted how the coronavirus pandemic is affecting Kate and me. My emphasis was the impact of not being able to eat out for lunch and dinner. I didn’t mention that some of the normal daily happenings can seem more troublesome than they might under ordinary circumstances. Several of those have occurred this past week.

Monday night, I changed the sheets on our bed. As I was putting the fitted bottom sheet on. I reached under the mattress to pull the sheet as tight as I could. I hit the knuckle of my right index finger on the bed frame. It was a minor injury, but I started to bleed. I went to look for a bandage and a found an old box with various small sizes. Finding the right one was a struggle as I tried to keep blood from dripping all over the place while I searched.

I had given Kate her iPad to work on puzzles while I made up the bed. She kept getting in trouble and asking for my help. That was fine until I cut my finger. My priority was getting it bandaged. She was impatient. I tried to explain that I had cut my finger and needed a few minutes. I don’t think she ever grasped what had happened. As quickly as I could, I cleaned up my finger and bandaged it.

Tuesday morning, I had a 10:45 appointment for labs at my doctor’s office. When I tried to get Kate up she balked. There was no moving her. My desire to be on time made me a little anxious. I made a call to my office and asked if one of my colleagues could stay with her. Barbara came right out.

As I was about to drive away from the doctor’s office, I felt something wet on my arm. I realized quickly that I must be bleeding although it didn’t show through the material. I keep napkins in the car for Kate and picked up a couple to stop the bleeding. Then I had a second thought. The doctor’s nurse would be able to handle this better than I. I went back in, and she took care of it.

As I said at the top, these are minor events, but they seem bigger with all the other changes that we are experiencing. I just like for things to go smoothly. As our current situation suggests, that doesn’t always happen even when you are in the middle of a much bigger crisis.

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Not Everything Has Changed for Us

NOTE: The following post was uploaded shortly before all restaurants in our area were closed. We will be eating at home with takeout from a few restaurants and meals prepared at home for the others.

As I write this post, the world is trying to adapt to significant changes related to the Coronavirus. WHO has declared a pandemic. Colleges and universities are extending spring break or cancelling classes for the balance of the semester. The NBA suspended its season. March Madness is off. Disneyland and Disney World are closed. And millions of people in the US and around the globe are making their own personal adjustments to the threat of Covid-19.

Kate and I are making our own changes. That is not new for us. We’ve been doing that for the past nine years since Alzheimer’s entered our lives. The fact that we eat out for both lunch and dinner every day is of special concern, however, and I am looking at that very carefully.

Getting food is not the problem. It’s the fact that we eat out for all our lunches and dinners. Of course, I can prepare meals at home or have them delivered, but that requires a life change that has been critical in our minimizing the impact of Alzheimer’s. It has helped to keep us from feeling socially isolated. It’s a change I don’t want to make, but we have made many changes already and have adapted well. I believe we will do the same this time.

That prompted me to think about some of the previous changes we’ve made. Kate gave up her position as our church librarian even before the diagnosis. She knew she wasn’t handling the job (even as a volunteer) the way she felt she should. I began a phased-in retirement to take care of her. Kate replaced her responsibilities with the library by working in the yard and working on a family photo book on her computer. Early on, I became the sole driver when Kate had an accident that totaled her car. I took over management of the household. I cut back on my volunteer activities at church and in the community. We discontinued international travel. We stopped making our annual trips to Chautauqua. We gave up all evening events except our music nights at Casa Bella that begin at 6:00 and end between 8:15 and 8:30. Kate had pruned the shrubbery so severely that many died and others didn’t have anything left to prune. She lost the ability to use the computer. That left her with the iPad that she has used so much until recently. Now she is having great difficulty working her jigsaw puzzles. We stopped making trips to see our children and grandchildren. Movies used to be an important source of entertainment. We saw only two last year, and Kate only enjoyed one of them.

Eating out has helped us maintain our quality of life. I am not yet planning to stop, but I do want to be prudent. Friday afternoon I made an unusual trip to the grocery story. Typically, I go once a week to buy eggs, V8, and bananas for my breakfast as well as a few other incidentals. Friday’s trip was for some frozen items as well as assorted foods that I can prepare at home. I didn’t buy a lot. I just wanted to make sure we have enough food for several days. During that time, I will reassess the situation and make further plans. I believe the probability of receiving or passing the virus is greater at some restaurants than others. We ate lunch at Applebee’s on Friday. No one was there when we arrived. Only three tables were occupied when we left. Bluefish Grill has very few customers for Saturday lunch, and they are spread out. That was true this past Saturday. Our Sunday lunch place seats almost 200. I counted thirty while we were there yesterday. Unfortunately, our regular music nights at Casa Bella appear to be the biggest threat. The crowd numbers about sixty in close proximity. The same is true for our regular pizza place.

We ate at home the past two nights. Saturday, I cooked boneless, skinless chicken thighs in a tomato sauce with Italian seasoning. Kate is not a vegetable eater, so I served fresh fruit salad with blueberries, bananas and apples. Last night, I added bouillon to the leftover thighs and sauce and made a soup. We had a very pleasant time both nights. In a way, sitting down at our own table was almost like a treat.

Looking ahead, I see a downside that I will have to address. Cooking adds a new element of stress. I have only so much time for all my activities, most of which involve caring for Kate. I skipped the Y on Friday to grocery shop. The preparation of a meal as well as the clean-up afterwards takes time I could do other things. This is a little thing, but I am reminded of why I was initially motivated me to eat out in the first place. It was only later that I came to realize its social benefits. I believe one reason I have been able to manage stress as well as I have is that I have worked to minimize the things I have to do on a daily basis. Cooking our meals is not something to which I look forward. I am going to assume this will be temporary, and plan for to eat out less. We have adapted before. We will continue to do what we need to.

As I think about all our changes, I have to say that one very important thing hasn’t changed – our relationship. What I mean is the feelings that Kate and I have for each other have remained strong. I would say even stronger than before Alzheimer’s. Each of us places more value on the other and recognizes it.

Kate may not always remember my name or that I am her husband, but she continues to feel comfortable with me. She is especially insecure now and looks to me for help with everything. Interestingly, she has called me by name more often in the past few weeks or months than she has for a year or two. I think that is a case of “reflexive memory.” She calls my name most when she needs something, and that occurs more frequently now. The name just pops out. At other times she asks my name. It often happens while riding in the car, eating a meal, or when she wakes up in the morning. In moments like those, my name and relationship have slipped away. I imagine she is thinking, “I know this guy, but who in the world is he?”

She continues to be very appreciative. Two nights ago, as she was getting in bed, she thanked me for taking care of her. For a moment she was emotional and started to cry. She said, “You have such a load on you.”

She also likes to be with me. We share many tender moments in which we express our love for each other even when it doesn’t involve words at all. Sometimes we just sit side-by-side with my arm around her listening to music. Other times, we just hold hands. We don’t always need to express our love in words. I didn’t imagine it would be like this at the time of her diagnosis. That’s just one more reason I say we are fortunate. I am grateful.

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Delusions Seem to be Increasing

I’m not quite sure when Kate began to experience delusions and hallucinations. I do know I first mentioned it in a post almost exactly a year ago. She had experienced them periodically before then. Now they are commonplace.

Thursday afternoon after resting, she looked very concerned. I walked over to her recliner. I told her she looked worried. She nodded that she was. I asked if she could tell me about it. At first, she said she couldn’t. Then she started talking. She was worried about a young man that somebody wanted to kill. Our conversation lasted about ten minutes. As she talked, she mentioned the possibility of my helping the young man in some way. I assured her that I would. She was relieved. This is at least the third time she has mentioned something related to killing. Once she was worried because she thought someone wanted to kill her. Another time, she felt guilty because she had been aware of a killing sometime in the past and hadn’t told anyone.

That night after I joined her in bed she said she needed my help. This time she was talking about a young man who was very bright but didn’t have the resources to pay for college. She wanted my help in getting him some assistance. This is a theme that is similar to other delusions. As I have done before, I told her I would do everything I could to help.

Friday night, she had been trying with great effort to work her jigsaw puzzles. Her mind must have drifted off because she started talking about a couple who were considering divorce though she couldn’t think of the word. She wanted me to talk with either the man or the woman to see if I could help them. Again, she was all right when I agreed to help.

These experiences tend to occur after she has rested a while although not necessarily asleep. Not all of them are disturbing, but the ones that bother her stand out. On other occasions, she hallucinates. For example, at a restaurant the other night, she looked below the outer edge of my plate and smiled. Then she made a comment about a girl she thought was there. Occasionally, she looks up at the ceiling while she is resting and talks to someone she sees.

For the most part, Kate’s delusions don’t create a big problem. The exceptions are those that disturb her in some way. Fortunately, talking through the situation and my offering to help her seems to calm her.

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Another Successful Experience with Music

The first time I looked to music for therapeutic purposes with Kate was over eight years ago. We were getting ready to attend a concert by the Knoxville Symphony. Kate was very slow getting dressed. I reminded her several times that we needed to leave right away. This was not long after her diagnosis, and I hadn’t learned how important it is not to rush her. She had a panic attack. That meant I had to calm her. That helped, but she was still experiencing the attack when we got to the car. The first thing I did was put on the second movement of Brahms’ Violin Concerto. It’s a very peaceful movement, and I hoped that might calm her. It worked. After that, I developed a short playlist of the second movements of violin concertos of Brahms, Mendelssohn, and Tchaikovsky. We never had another severe panic attack, but she did have milder ones.

That playlist came in handy, and it motivated me to select a broad range of music to play in the car wherever we went. I still play music anytime we are in the car, and I’m careful to select music she especially likes. From there I expanded music at home. Now I rely on it all the time, and I am always discovering new applications. One of those occurred yesterday.

The recent Covid-19 pandemic is affecting everyone. I had been to the grocery store to get a few things in case we weren’t able to eat out. I returned home an hour after the sitter arrived. Although I knew I might run into trouble, I came back just to unload the groceries, some of which needed to be refrigerated or frozen.

As I walked into the kitchen, I saw that Kate was lying on the sofa with her eyes open. I felt I couldn’t leave without speaking to her. I sat down beside her and saw that she was disturbed. I asked what was wrong. She said, “I don’t know. I’m just not myself.” I talked to her very calmly for a few minutes but could tell this was going to take more time.

I told the sitter she could go and turned on “Send in the Clowns” sung by Barbra Streisand. This song has long been one of Kate’s favorites. It is usually very soothing. Not this time. It is a sad song, and, for the first time, she felt the sadness as opposed to the song’s beauty. I knew she needed something much lighter and thought of “A Bushel and a Peck” by Doris Day. I sometimes use this when I am trying to get her up in the morning. She recognized the song very quickly, and the two of us sang it together. She became more cheerful. We, accompanied by Doris, sang it two more times.

This had been successful but had only taken a few minutes. She and I sing together, at least for brief periods, periodically, but it is usually in the car. I decided it might be good if we sang more and streamed a 3-disc album of 100 children’s songs. We started with “The Alphabet Song.” Then we moved to the “Eensy, Weensy Spider.” For the next hour we sang songs we hadn’t heard since our own children were young, some not since we we were children ourselves. They included songs like “Polly-Wolly-Doodle,” “If You’re Happy,” “ The Bear Went Over the Mountain,” “Bingo,” “This Old Man,” “Mary Had a Little Lamb,” “Old McDonald,” “Do Lord,” “She’ll Be Comin’ ‘Round the Mountain,” and many others. We must have sung 30-40 of the 100 and had a great time.

Music is powerful. It has saved us many times, and is always a source of great pleasure.

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Key Events from Yesterday

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

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

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

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

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

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

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

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

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

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

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

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Lots of Unpredictable Things, But There are Daily Patterns

I have come to appreciate the experiences of other caregivers who report the unpredictability of people with dementia. After seven or eight years of a rather steady daily routine, I don’t claim to be able to predict what Kate will be like from one moment to the next. There is one pattern, however, that seems to have emerged. Mornings are the most challenging times. The biggest problem is Kate’s waking and being confused or frightened. Thankfully, this doesn’t occur often, but it is strikingly different and more unpleasant than the way she has been in the past.

My way of making sense out of these experiences is to think how I would feel if I woke up and didn’t know where I was, who I was, or what I should do. Fright seems a natural reaction. It also makes sense to me that after being asleep all night, Kate hasn’t had any external stimulation that would give her a sense of comfort. Once she gets up and is exposed to the house, to me, and our routine, she feels more at ease. This usually occurs before we leave for lunch.

Some days I have to work harder, but very gently, to get her up and oriented. For example, yesterday morning I awoke about 5:00 and quickly decided to sleep another hour before getting up. At 5:45, Kate said, “Who is here?” I said, “I am.” She said, “Who are you?” I said, “Richard.” She didn’t say anything. I asked what I could do for her. She said, “I’m scared.” I asked if she could tell me what had scared her. She said, “I don’t know.” If it were not for our previous experiences and what I have learned about dementia, I might have probed to see if I could identify the problem. As it was, I know that when she says, “I don’t know,” I’m not likely to learn anything by asking questions.

I told her I wanted to help her. She asked my name again. Knowing that this might be a day when she sleeps later than usual, I asked if she wanted to go to the bathroom. She said she did and asked where it was. I told her I would show her. She was unsteady and confused.

When I got her back to bed, I asked if she wanted me to stay with her. She did. I got my laptop and took a chair beside the bed. I also played some relaxing music while she went back to sleep. Then I went back to the kitchen. It was over an hour before I went to the bedroom. I told her I wanted to invite her to lunch and asked if she would like to go with me. She did and got up and dressed rather easily. I think the key was not pushing her. It might not have been as easy for me if she hadn’t gotten up so early in the first place. We had plenty of time. We were the first people to arrive at the restaurant. That was a first.

She is generally all right in the afternoon, but in the past few months, she has experienced more delusions and/or hallucinations. This typically happens after she has been resting a while. I think that while resting she is drifting in and out of sleep and appears to have had a dream. She often talks to someone who is “not there” or to say something to me that suggests I have experienced whatever she has just experienced. The good thing is that she isn’t disturbed at all. Sometimes she is especially happy. That often happens when she believes she has an hallucination involving someone she apparently hasn’t seen in a long time. I say that because of the look on her face and the sound of the voice.

We had an experience yesterday afternoon that is a good example. She had been resting for more than two hours, and I walked into the kitchen for a few minutes. When I walked back into the family room, she got a big smile on her face and pointed to me. I said, “Well, I guess you recognize me?” She said, “Who are you?” I said, “Me.” She asked my name, and I told her and asked if it rang a bell. She wasn’t sure. I said, “I bet I know your name?” She said, “What?” When I told her, she said, “How did you know?”

I walked over to her and told her I knew a lot about her and her family. I don’t recall exactly what she said after that, but she conveyed that she didn’t know the words or how to say what she wanted to express but wanted to learn. She hoped I would be able to stay around so that she could learn from me. I told her I would be happy to teach her. I also said that she had a number of photo books with lots of information about her father’s and mother’s families as well as one her brother had given to her.

By then, it was time for dinner. I told her we could look at some of the books after we got home. As it turned out, she was tired and wanted to get ready for bed. She had forgotten about the books, but we will soon look at them as we do so often.

My explanation for this experience is similar to what I said about her morning fright. She isn’t frightened, but she has gone through a period of time (as long as two hours) when we have had minimal interaction. It’s not quite like the lengthy overnight absence of external stimulation, but it results in a sense of confusion. It’s as though the circuits of the brain have been asleep and need time to wake up.

Our evenings between returning home from dinner and going to sleep are clearly the most predictably happy and relaxed times of the day for both of us. By the time I get in bed, she has been there at least an hour. Except on the few occasions when she is sound asleep, she is always glad to see me. We often comment on having a nice day and express our love for each other. Then we peacefully drift off to sleep.

I believe the predictability relates to the fact that we have no commitments after dinner. It is simply a time to relax. I do try to keep to a routine bedtime for both of us, but that seems to occur without having to work. For at least an hour, I play YouTube music videos on the TV. Then I put on even more relaxing music on our audio system. It’s a peaceful time of the day.

Looking to the future, I suspect there will be a time when we start having lunch at home and, perhaps, separately. Doing so would prevent rushing her. Right now, I believe it is more important for us to maintain our active lives outside the home. In the meantime, I will continue to make the mornings as free of stress for Kate as I can. That means waking her gently and offering her comfort when she needs it.