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.

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.

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.

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.

Something Old, Something New

For the past few years, Kate as worked jigsaw puzzles on her iPad while I watched the evening news. Now that she is less able to work her puzzles, we are trying to adapt. Without her iPad, she has little to do in the evening. When we return home from dinner, I usually ask if she would like to work on her puzzles. Sometimes she does; sometimes she doesn’t.

Last night, she asked if there was something she could read. What she was really asking is “What can I do now?” I always mention her puzzles, one of her family photo books, watch the news with me, or watch musical performances on YouTube. Last night, she said she wanted to work puzzles. I brought her iPad to her, but she changed her mind. Then I handed her the “Big Sister” album her brother Ken had made for her. This has been a big success since he gave it to her almost two years ago.

As she looked at it, she said, “What do I do?” I told her she could look through it and enjoy the many pictures of her and Ken and their family. She didn’t understand. (This is an experience that happens frequently now. For example, it happens when I give her the toothbrush to brush her teeth. Sometimes it occurs when I open the car door for her.) I tried to explain by commenting on several pictures.

This turned out to be one of those times when she thinks her photo book works like her iPad. She touches a photo and waits for something to happen. Once or twice I have observed her looking at other albums or magazines and doing the same thing. In those instances, she didn’t seem bothered by the fact that nothing happened. That wasn’t true last night. She wanted me to help her, but I found that an impossible task. Nevertheless, she was interested, and I really wanted to help her.

I told her the first thing to know was that touching the picture won’t do anything. I explained that she should just look at a picture and enjoy what she sees. I gave her a chance to try it. She immediately touched a photo and waited for something to happen. I reminded her that nothing would happen. I knew my efforts were likely to fail, but I spent about ten minutes trying to teach her how to enjoy the photos.

Finally, I suggested that we turn on the TV and pull up some Andre Rieu concerts on YouTube. That turned out to be a winner. Music came to the rescue again. I didn’t get to watch the news, but I took my shower and watched with her. We spent almost two and a half hours with Andre. It turned out to be a good evening after all.

As useful as some of the old tools in my box can be, it’s always nice to have new things I can add. Last week, I saw an ad on Facebook that said the company could compile a book of the photos I had posted over the past decade. The idea intrigued me, and I made the purchase immediately. The book arrived on Monday, and I was looking for the right moment to show it to Kate. Yesterday afternoon was a good time. She has rested about two hours, and it was still too early for us to do to dinner. I told her I had something to show her, and we both took a seat on the sofa. It’s a big book with 550 photos, so I was unsure how far we would get. As it turned out, we came close to looking at the whole thing. I was surprised. Recently, she has gotten tired when we have looked at some of her other photo books. Personally, I did find it a lot to go through in one sitting, but I was encouraged by her response and will look forward to looking at it again.

If any of you are thinking of having a book like this, I would suggest you do it more carefully than I did. During the ordering process, the company gave me a chance to edit. I thought it was too much trouble. For my purposes, I still think that was true. If I were doing it again, I would go through the entire book and delete unwanted photos and also change the order in which some of them appear. In my case, the book meets my needs. It gives me one other thing I can use with Kate to make her day and mine more enjoyable.

More Delusions and Hallucinations

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

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

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

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