My Busiest Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

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.

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.

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.