Posted on

Life is Different for Us Now, and It’s More Than Covid-19

It is Thursday, three days since my previous post. Some of my readers have let me know they wonder if something is wrong when I miss a day or two. I usually say that I have been busy and that we haven’t experienced any significant problems. That answer doesn’t fit this time.

I have been busy, but a good bit of that has involved problem-solving with Kate. She hasn’t been her normal self. It seems to be an escalation of the problems surrounding her sleeping late. It’s not just the sleeping that is the problem. She has been more confused. She frequently thinks she is not in her own house. Now, however, it seems that she typically believes she is somewhere else. I don’t believe there was a time yesterday when she realized she was at home.

It’s not just home that she doesn’t recognize. She is also having more trouble recognizing me as her husband. It’s ironic that she is simultaneously remembering my name more than she has in a long time. That provides me with a certain amount of comfort although she frequently asks, “Where is my husband?” or says, “I wish Frank were here.” That was especially true yesterday. Before I tell you about that, I need to follow up on our very busy day Sunday. It will be easy to summarize.

You will recall that she was up early on Sunday and very active. She wasn’t agitated, but she was awake all but a very brief time during the entire day. She slept well that night and was wiped out the next day. I made an effort to get her up for lunch before the sitter came. That was a lost cause. I decided to let her sleep/rest as long she wanted. I finally got her up for dinner at 5:45.

She didn’t want to come to the table. I set up a card table and folding chairs in the bedroom, and we ate our dinner. She was still tired after dinner and wanted to go to bed. She slept well. When she woke up on Tuesday, she was back to normal. We had a good day. That brings us to yesterday.

Kate got up about 6:45. I don’t recall her ever getting up so early in years except for a bathroom break. I was in the kitchen when I looked at the video cam. She was starting to make up the bed. When I went to her, I found that she seemed wide awake. I offered to take her to the bathroom. She didn’t want to go. She also didn’t want to get dressed. She wasn’t irritated with me. She just didn’t want to do these things. She was somewhat like she had been on Sunday. She felt there were things she needed to do.

I had taken my plate of scrambled eggs with me to the bedroom. She saw them and said, “That looks good.”  I told her I could make some for her. She liked the idea, and we went to the kitchen.

Throughout the entire day, she kept “losing” me. In most instances, I was very near her at the time. She just didn’t see or recognize me. This first occurred as I walked ahead of her from the bedroom to the kitchen, she lost me a couple of times and asked where I was. She didn’t seem terribly upset, but she was relieved when she saw me. This continued at the table while I was getting her breakfast of apple juice, strawberries, grapes, and scrambled eggs. She ate every bite. I was pleased because she hasn’t wanted eggs in a long time. I’m glad to have a more nutritious option for blueberry muffins.

It was also a day when she didn’t recognize me as her husband nor that she was in our home. She was especially surprised when I started to load the dishwasher. She acted like I was her guest and said she would do it later.

Several times she said, “Where is your brother?” I told her Birmingham. She said, “Why is he there?” One time she said, “When is he coming?” This surprised me as she hasn’t said anything about my brother in a long time. I can’t imagine what prompted her to remember him.

After breakfast, she was tired and wanted to rest. I suggested she get dressed first and then rest in the family room. She accepted my suggestion and slept almost an hour, much less time that I expected given that she was up so early. Since I had missed my morning walk, I took advantage of the time and took it then (inside the house, of course).

The next surprise was that she started to get up after she was awake. Normally, she would continue to rest and only get up when I suggest that we do something together. I asked her where she was going. She said she didn’t know. That’s when I suggested that I come over to the sofa and look at one of her photo books with her. She agreed.

I picked up a photo book and sat with her. She didn’t know who I was and asked my name. I told her, and she wanted to know our relationship. I told her I was her husband. This was a time when I shouldn’t have been honest. She was bothered by not knowing. I told her I didn’t mean to upset her. She said she wanted me to be honest. She went on to say she was not herself. I told her I recognized that. She wanted to know why she was this way. She said, “It’s not just my memory. I don’t know how to do things.” I said, “That must be scary.” She said, “It is.’

She wasn’t as interested in going through the photos as she usually is. That led me to go in a different direction. I started to give her a tour of the living and dining rooms. We passed by a photo of our twin grandchildren. She enjoyed seeing them. Then I showed her a pitcher with a note from her mother that said it had been a gift from her father to his mother and that she had kept in her living room many years and was to go to Kate who could pass it along to our daughter Jesse. Kate was moved by this. From there we went to the living room. I showed her a cabinet with eighteen porcelain dolls. Her father had given them to her mother for anniversaries, birthdays, and other special occasions. At this point, she got very emotional and indicated this was too much for her. I suggested we eat lunch. I fixed her a grilled ham and cheese sandwich and a salad with chicken for me. She sat at the table while I prepared the meal. Several times, she said, “Where is he?” Each time, I walked to her and said, “I am right here. I wouldn’t leave you.” She was very relieved each time.

After lunch, we went back to the family room to look at photo books again. That’s what we were doing when the sitter arrived. Kate was still confused. I decided not to abruptly  get up and leave. Mary had brought her lunch and ate it in the kitchen while we continued to look at family pictures. When Mary finished, she came back to the family room and took a chair across the room. Finally, I told Kate I thought I would take a walk around the neighborhood and asked if that would be all right. She said that would be fine, and I slipped out.

I was gone forty minutes. I expected to see Kate asleep on the sofa. Instead, she was still looking at her photo book. That is very unusual. She always likes to nap after lunch. In addition, I don’t remember a time when she spent that long looking at photo books by herself. It makes me think that she was trying to find something that would jog her memory.

More importantly, she was more confused than when I left. She looked at me with a flash of recognition but was puzzled. I think she recognized me as someone she knows but not as her husband. I sat down with her and went through the book giving her information about the people she in the book. Several times she asked my name and relationship. I told her, but she didn’t express any great emotion.

I could tell rather quickly that she needed something to divert her and thought of her father’s family movies that had been transferred to DVDs. I mentioned them to her, and she was interested. We went back to the bedroom where I put in one of the DVDs. The part we watched was shot around the mid-to-late 1930s, so the quality of the film is poor. The sound that accompanies them was made by Kate’s father, mother, and two cousins as they watched the films we watched. That helped us identify most of the people. That is especially important for the children we have only known as adults. Kate was immediately taken by what she saw. We watched for an hour before ordering a takeout meal for dinner.

During the film, Kate periodically said, “Where is my husband?” Each time I said, “I am right here.” She experienced immediate relief and then asked the same question again. It was a bit frustrating for both of us, she because she didn’t know where I was and didn’t recognize me as her husband, I because no matter what I said I could give her only momentary comfort.

We went through this same routine at dinner. After we finished, she was tired and ready for bed. She was still awake when I joined her two hours later. She didn’t ask about her husband, but I could tell by the way she responded to me that she didn’t believe I was he.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

Key Events from Yesterday

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

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

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

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

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

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

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

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

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

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

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

Posted on

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.

Posted on

Examples of Kate’s Decline

Each morning I find myself wondering “What’s in store for today?” Even though most days go well, I am always on alert for problems. That’s how I was two days ago. I knew the sitter was to arrive at 1:00 and that I had an appointment to donate platelets shortly after that. I wanted to get her up in time for us to have lunch together. Around 9:00, I was encouraged when I heard her talking . I went back to the bedroom. She greeted me with a smile and chatted a few minutes. She said she was waiting for someone to take her home. I told her I would be happy to do that. She said that her mother would do it. Then she said it was “that guy” whose name she couldn’t recall. I asked her if she was ready to get up. She wasn’t. I told her I would be in the kitchen and to call me when she was ready. I was going to give her another hour or so before going in again, but less than thirty minutes passed before I heard her say, “I’m here.” She was ready to go home.

I took her to Panera for a muffin and then to lunch. As my previous posts about her sleeping later suggests, she gets very tired. She had taken her place on the sofa in the family room before Mary arrived. She was still there when I returned. During the past two or three weeks, with a couple of exceptions, she appears to have rested the entire time the sitters were here. Although she is comfortable with both sitters, I have the impression that she is going through a stage when she feels especially dependent on me and simply waits for me to come home. I am sure that is true with respect to using the bathroom. I’m only aware of one time she has gone to the bathroom while the sitter is here. That was recently when the sitter helped her get up and dressed after she had slept late.

I see this dependency in other small ways. She likes me to sit beside her when we sit in a booth at restaurant. The same is true at Casa Bella when we are seated at a table for six or eight. She wants to hold my hand more often when we are walking. She wants more instructions about what to do when toileting, brushing teeth, taking a shower, getting ready for bed. She hasn’t given up all signs of independence, but she is coming close to that.

She is forgetting a lot with respect to eating. She often points to the bread on the table at a restaurant and asks what it is. When I tell her, it doesn’t necessarily help. She is still a good eater, but she often fails to recognize the entree on her plate. She doesn’t recognize the salt and pepper at our neighborhood Mexican restaurant. Part of the confusion is that they are in the small Corona beer bottles, but the salt and pepper are clearly visible though not to her.

She also worries more frequently. Sometimes it involves a belief that she has an obligation of some sort. She worries about whether she has forgotten to do something. She also worries about people who have financial and health problems. The other night she talked a good while about some kind of disease that is being transmitted from mothers to their babies. She said there was a preventive medication that mothers can take. She told me she was planning to have herself tested. On the way to dinner last night, she was worried she might have done something to me that she shouldn’t. I assured her she hadn’t.

I also notice she isn’t as cheerful throughout the day. I think that goes along with her being tired. She does, however, have moments off and on during the day when she is very lighthearted and takes great pleasure in teasing me.

Taken together these things and many others are signs of the progression of her Alzheimer’s. We still have “Happy Moments,” but it is clear that I am unable to control everything. Some people suggest the disease always wins. In a sense this is true; however, I consider it a victory that we have been able to live happily, even joyfully, for so long. I intend for us to do as much as we can as long as we can, but I also recognize the reality that Kate’s decline means significant changes in our lifestyle.

Posted on

More on Kate’s Sleep/Rest

On Friday, the day I met with Kate’s doctor, I was once again unable to get her up before the sitter arrived. She was in a good mood. She even said she would like to go to lunch with me, but she would never get up. She said something like, “Just give me a few minutes,” but she still wouldn’t get up. She stayed in bed until I got home at 5:00. Except for a short bathroom break that morning, she had been in bed nineteen hours. She was up less than two hours for us to go out to dinner and return home. She was back in bed at 7:30 and went to sleep rather quickly which is unusual.

She continued to sleep Saturday morning until 11:00 when I tried to get her up. She was resistant, but I coaxed her. I told her I was concerned about her staying in bed so much and that she needed to keep her muscles exercised or she could find herself in a wheelchair. That did the trick. Once she was up, she seemed fine. She was in a good mood, and we had a nice lunch.

When we returned home, she rested over two hours. Then I suggested that we look at one of her photo books. We spent about thirty minutes on that before going to dinner. As she had done the previous night, she got ready for bed right after dinner. I was glad to see that she woke up on her own around 9:00 this morning. She wasn’t sure where she was but wanted to “get out of here.” I told her I would take her. We passed a little over an hour at Panera before leaving for lunch. She has been resting almost two hours since returning home.

She is definitely spending more time resting with breaks for lunch and dinner most days. So far, we have had only two days when I wasn’t able to take her to lunch. There has also been an impact on her use of the iPad. I’ve been keeping a record of her daily average time on the iPad using her screen time for the correct information. For the week ending January 5, she averaged 49 minutes a day. That dropped to 39 the next week. The figures for the succeeding weeks are 25, 26 18, and only 8 minutes a day this past week. That’s a dramatic shift from my estimate of 6-8 hours a day as late as last summer.

We are in a transition phase now, and I will take it a day at a time as I attempt to establish a new routine if that is possible.