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A Humorous Moment, But a Good Example of Everyday Life

We arrived at Panera about fifteen minutes ago. I forgot to charge Kate’s iPad last night, so I brought my old one for her. I turned it on and set it up for her puzzles while she got herself a drink. I placed my own iPad, the larger 12.9” model, opposite her chair. Then I went to the counter to order her muffin and our drinks. When I returned, she was trying to figure out to get her puzzles on my iPad. She couldn’t do it because she didn’t have my password. It did not surprise me that

What I think is interesting about this is that the iPad I put right in front of her was all ready to go. I thought I was making this easy for her. Instead, she chose my iPad across the table. This is just one of the many mysteries surrounding the way the brain works for someone with dementia. It is also a good example of the many daily experiences in which a caregiver attempts to prevent a problem or make things easier for her loved one only to discover it didn’t work the way you intended.

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Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.

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Yesterday’s routine was a bit different, but it was another good day.

If you are a regular reader, you are well aware that Kate and I lead a very routine life. That is in large measure because that is the way I try to organize my personal life; however, it also relates to my belief that having a routine might be good for Kate. Our typical day involves a visit to Panera in the morning, out to lunch, home for a while, a visit to Barnes & Noble or Panera, home again, out to dinner, back home, relaxing and going to bed. We don’t duplicate any of our restaurants in a given week, but we do have specific restaurants at which we eat for each meal of the week. There is some variation on Tuesday night, Thursday, and Sunday night. I might add that at each restaurant we have our favorite meals and almost always order the same thing each week.

Yesterday we didn’t follow the pattern at all. First of all, Kate didn’t get up until noon. That meant that we skipped what is perhaps the most regular part of our day, Panera. She wasn’t ready to leave for lunch until almost 1:30. I decided to go to a local deli we rarely visit because it is so busy at lunch. That turned out to be a nice change.

After lunch, we came back home. I put on some music and worked on my blog while, Kate worked jigsaw puzzles on her iPad. I was prepared for her to be ready for either Panera or Barnes & Noble after we had been home an hour. It turned out that we didn’t move for almost two and a half hours. By that time, it was getting close to dinner.

We had had such a good week so far and our daily routine had been so different, I decided to do something different for dinner. I made reservations at Casa Bella. That may not seem different since we eat there the first three Thursdays each month, but those are nights we go for dinner and music. We sit with a group and have a great social and musical evening. Last night we sat a table for two in a smaller and quieter room and reminisced about the many occasions, most happy but some sad, that had brought us there. We usually order the veal piccata. This time we chose one of their daily specials, roasted pork shoulder with baked apples with fennel over polenta. Even for somebody who likes a routine, it’s nice to do something different once in a while. It was a perfect way to end our day.

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Many triggers still work.

In my previous post, I noted how difficult (impossible?) it is for Kate to remember the name for Grant Wood’s American Gothic. That doesn’t mean that there aren’t other triggers that lead her to remember things I might think are long forgotten. I’m thinking of two specific things that occurred in the past few days. Both of them involves passages from the Bible.

The first came about when I had done something to which she said, “Well done.” That triggered her to recall the passage that says, “Well done, thou good and faithful servant.” She didn’t remember the exact words, but she was close. The second occurred yesterday when I told her I was thinking about going to a restaurant we had not been to in a while. First, she said, “I’ll go wherever you go.” That caused her to remember the Old Testament passage in which Ruth tells Naomi, “. . . where you go, I will go, and where you lodge, I will lodge. Your people will be my people, and your God, my God.” Once again, she didn’t get the exact words, but she had a pretty good idea.

There are other times when her own thoughts act as triggers. Yesterday, for example, we were driving to lunch when she said, “June Allyson.” I have no idea what she might have been thinking that brought her name up, and she couldn’t tell me. This is not something that occurs a lot but often enough that it doesn’t surprise me. It just shows that like the rest of us, her brain is still working. Thoughts are going through her head all the time.

On related note, a couple of times lately, she has pointed to someone and said, “He looks like your brother.” I have looked and could see a resemblance. What makes this interesting is that she often can’t remember his name. This reinforces the opinion I have expressed before that remembering the name associated with a person is only one, and minor, part of “knowing” someone.

Two nights ago at dinner, she engaged actively in conversation with our pastor and his wife. After we said our goodbyes, she asked me their names. I gave her the wife’s first name, and she asked for the last name. I told her. Then she asked the pastor’s name. After I told her his first name, she asked his last name. The whole process of labeling seems to have come “unglued,” but she is still able to interact with amazing success. That’s another thing for which I am grateful.

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American Gothic

Four years ago, Kate and I took our 15-year-old grandson, Brian, to Chicago. Among the places we visited was the Art Institute of Chicago. Knowing that this might not be among the most exciting places for him, we explained that we would not take a tour of the entire museum. Instead, I had found a brochure that identified about ten well-known pieces of art in the museum. This turned out to be an excellent way to engage him. Grant Wood’s American Gothic was among them. We told Brian that this was a painting he was likely to see in the future. When we said that, he recalled that one of the restaurants in Knoxville to which we had taken him has a print of it. Kate and I eat dinner at this restaurant rather frequently and always think of Brian when we see it. One of the jigsaw puzzles Kate works is American Gothic. Thus, it is a painting she sees quite often.

As with so many things, she has trouble remembering the painting’s name. Sometimes she gets “American,” but can’t remember Gothic. It seems to be prompted by seeing a print of the painting or the puzzle she is working on. A very typical experience occurred last night. She was working puzzles on her iPad and with sense of indecision asked, “American?” I said, “Gothic.” Then she repeated the full name. She looked down at her iPad and asked, “What is it again?” I told her again. This happened several times before she stopped. This is the way it always goes. I don’t think she ever gets more than American, and not always that, but she never stops trying.

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Another Good Day

This is a short follow up to my previous post about our good day yesterday. I closed that by saying, “We’ll see what tomorrow brings.” Now I know. It’s been another good day. Once again it was a day without any special events. We just went about our daily routine. Kate has also been unusually good humored all day.

I won’t detail exactly what we did as in the previous post. I would just like to make two observations. First, and more important, it has now been two days that Kate has not complained about the arthritis in her knee. Except for how slowly she walks and gets in and out of the car, I wouldn’t know that she has a knee problem at all. I don’t believe this was because of any lessening of pain. I believe it relates to her mood. She has simply been more positive in her outlook today. The only sign of annoyance she displayed all day was at Panera this morning when a young child screamed a couple of times. As I have said before, she is very sensitive to sudden and/or loud noises. As much as she loves seeing young children, she is often bothered by the noises they make.

The other observation is not directly related to her mood. It relates to her use of hand signals to communicate with me. I have mentioned that she uses hand signals to ask things like, “Should I get put on my night clothes?” Or “Should I take my iPad?” Or “Should I take my cup into the restaurant with me?” I don’t believe, however, that I have said anything about her responses to me when I say things like, “I love you.” “If I had the chance, I would marry you again.” Or any other loving or complimentary words. Instead of verbalizing her response, she points her index finger at herself and then at me to say she feels the same about me. This is not something I had known to be a characteristic of someone with dementia, but it may be. I do know That someone I follow on Twitter recently mentioned that his wife used a hand signal to indicate she was ready for their nightly orange for dessert; however, his wife has some impairment of speech. Kate does not.

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A Good Day Even if We Didn’t Do Anything Special

Kate and I have a lot of good days. Yesterday was one of them. Often they are good because of things we have done together, things like attending musical or theatrical performances or spending time with friends or family. Yesterday, we didn’t do anything special; we just did our usual things.

Kate started the day in a very good humor. When she came into the kitchen she showed no sign of being tired. She was just ready for a nice day. She was wearing a very nice jacket that didn’t match her everyday clothes. I started to suggest that she wear another sweater or jacket, but I decided against it.

As we drove to Panera, she teased me about something. Sometimes it doesn’t sound like teasing. In this case, it was just very natural playfulness. While at Panera, she brought up the names of two people whose names she often forgets. One is my brother, Larry. The other is our good friend, Tom Robinson. She asked me the names of their wives, and said, “I don’t know why I can never remember them?” I hear this periodically. That is one of the reasons I believe she no longer connects her symptoms with her Alzheimers, and I see no reason to point it out.

I had arranged for the sitter to come an hour earlier so that I could attend a United Way lunch meeting. We didn’t get to Panera until thirty minutes before the sitter was to arrive at home. I called and asked that she meet us at Panera. It wasn’t until about ten minutes before the sitter arrived that I told Kate I was going to be leaving. I explained that the sitter was coming to be with her. She took that very naturally without any appearance of disappointment or dissatisfaction. Of course, that made me feel good about leaving. When the sitter walked up to our table, Kate greeted her warmly. I left them to decide how long they stayed and what they would do after that.

When I arrived back home, Kate was resting on the sofa while the sitter was watching television. I chatted with the two of them for a few minutes. When the sitter got up to leave, I thanked her. Kate thanked her as well.

I asked Kate if she would like to go to Barnes & Nobel. I knew she would say yes. She didn’t disappoint me. As we prepared to leave, I saw that she was wearing a pair of brown shoes and carrying the black shoes she had been wearing. I asked if she were going to wear the black ones. She asked what I thought. I told her I thought the black would look better. She accepted that without any hint that she resented my telling her. She changed, and we left. We stopped by the bank for me to make a deposit. I left Kate in the car. The people in line ahead of me had some special situations that required a good bit of time. I apologized to Kate for taking so long. She said it didn’t seem that long.

After leaving Barnes & Noble, we went to Chalupas for dinner. We’ve had a good bit of rain yesterday, and I wondered if it might rain again today. I tried to check the weather report on my phone, but it took too long for the app to open. I decided to check Facebook just to see if it might have been a problem with the cellular connection. When I did, I saw that one of Kate’s cousins had posted something about an arithmetic book that their second grade teacher had written and is now available on Amazon. Before I could read the name of the teacher, Kate said it. Her eyes brightened and she said she wanted to get the book. I told her we would. Then she started talking about her teacher and that she had remembered the teacher’s taking an interest in her. She has been losing many of her long-term memories, so I enjoyed seeing this memory come back to her and that she felt so good.

Just before we left Chalupas, she pointed to her glass and asked, “Ours or theirs?” I told her the glasses belonged to the restaurant. On two or three other occasions she has started to leave with one. The first time the owner followed us outside and diplomatically asked if she would like a cup to take away cup. The other time or two I caught her before we got out the door.

In the car on the way home she started talking about our marriage and how many things we shared in common. Then she said she was tired and thought she would crash when she got home. She asked if that would be all right. I told her that would be fine, that she could do whatever she liked. She could just relax. She said, “That’s what I like about you. You are so understanding.” And she wasn’t being sarcastic. (I realize that when I report things like this, it can seem very self-serving. My intent is to convey her own perceptions and that she is still able to respond to the way she is treated. When she says these things, to me it is like saying, “I’m still here. Please don’t forget that.”

After we got home, she walked through the family room. Just before she going through the door to the back of the house where the bedrooms are located, she asked, “Which way do I go?” I walked toward her. Before I could answer, she said, “I usually go this way.” She was pointing to our bedroom. I said, “That’s it.”

A few minutes later she went to her room, got her robe and asked (using hand signals) if she should put it on. I told her she could. She took her nightly meds that I had put on her bedside table. Then she asked again in hand signals if she should put on her robe. Again, I told her that would be fine. In another minute, she called to me for help. I noticed that she was struggling with her robe. She asked if she had it inside out. As I went over to help, she said she had figured it out. It turns out that she had put her right arm in the left sleeve of the robe. She worked on her iPad for 10-15 minutes, and then called it a night.

We hadn’t done anything special, but it was a good day for both of us. She was in a good humor every minute of the day. I hope my account of our communication properly conveys the change that has been in process over a long period of time. She seems to be looking to me more as a partner in her journey. She displays an element of trust that reinforces my efforts as her caregiver. I know that not all caregivers are as fortunate. So as I’ve said before, if Kate’s had a good day, it’s been a good day for me. We’ll see what tomorrow brings.

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No Serious Consequences, Just One of those Little Things

Last week while we were in Memphis, Jesse took us to a restaurant located in an old gas station. As we were leaving, Kate wanted to stop at the restroom. The rest of us waited in the reception area. It is not unusual for her to take a long time, so I didn’t worry when she didn’t come out in, what for most people, would be a reasonable time. In a few minutes, another customer approached the door. Discovering it was locked, she wited for her to come out. She got tired and went in the men’s room. Finally, I decided to check on her. I knocked on the door and asked if everything was all right. It was difficult to hear her through the door. She began to jiggle the door knob. I heard her say it wouldn’t open. I saw that it was the type of knob on many home bathroom doors. It had a pinhole in the center of the knob to allow a sharp object to go through and unlock it. I went to an employee who gave me a spindle that I thought would work. I was on the way back to the women’s room when I saw Jesse and Kate. It turns out that Jesse had been able to communicate to Kate and explain how to unlock the door.

We have a similar lock on a laundry room door that leads to our garage. Kate often locks it when we come home at night. In addition, she obviously locked the door when she went in. For this reason, I was a little surprised that she couldn’t figure out how to unlock it, but this is a good example of the kinds of inconsistencies that occur with great regularity. It is also a good example of my own misjudgment in not trying to explain to her how she could unlock it. My first thought was what can I do to get the door open. I believe I was influenced by my past experience in which explaining things can be very difficult. Jesse came at this with a fresh eye. She did the straightforward thing. She asked Kate if she could see the “thing” in the center of the knob. Kate said she could. Jesse asked her to turn it. She did. It was that simple.

It is always interesting to me how at ease Kate is under somewhat trying circumstances like this. I have lost her a number of times over the past few years. She has never panicked but responded very calmly to the situation. In this particular case, one might have thought she would bang on the door or call for help. She did neither. I’m just glad that the restrooms were right off the reception area where we were waiting. If we had remained at our table, we might have let more time pass. Then she might not have been as calm.

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Living with Alzheimer’s often involves a bit of “Recalculating.”

Years ago when GPS devices were first on the market, I bought one for my car. I found it can be quite valuable, but sometimes I would take a wrong turn. When I did, the woman’s voice would say, “Off route. Recalculating.” She was determined and wouldn’t stop repeating herself until I followed her instructions.

I’ve always found that a metaphor for life. Everyone has had the experience of heading in one direction (a career goal, a financial goal, personal goals, big goals and small goals) when something happens, and find himself “off route.” Then it is time to recalculate, or, as some would say, “It’s time for Plan B.”

That is a message with which every caregiver for a loved one with Alzheimer’s can identify. It might be especially so for someone like me who is such a creature of habit. We are always encountering surprises and recalculating. We learn to be flexible or simply suffer. I like to choose flexibility. Let me give you several little examples from yesterday and this morning.

For the past two years, Kate and I have eaten almost every Sunday meal at Altruda’s, a local Italian restaurant. We split one of their chicken entrees each week. They have four that we choose from and rotate from week to week. We never have dessert although we both love them. Over the past couple of weeks, I have eaten a little more than I normally do and picked up a couple of pounds, so I decided to watch more carefully what and how much I eat. The server knows us well, specifically that we never get dessert, but yesterday she asked if we wanted one. I promptly told her no. When I did, Kate said, “Well, I do.” We asked what they have. The server showed us the menu but told us that they had a special dessert that was not on the menu – banana pudding cake. It sounded very rich, but I told her to bring us one. It was a bigger piece than I expected. In addition, it had a very thick, calorie laden icing, banana pudding between two of the layers, and icing on top of the bottom layer. So much for my watching what I eat. As I think about the future, I don’t want to look back and wish that I had not worried so much about my weight and put the emphasis on enjoying the experience with Kate. I believe I made the right decision.

Before going to bed last night, I picked up two glasses in the family room, took them to the kitchen, and put them in the dish washer. Last night I had put Kates meds in a small glass and water in another larger one. I noticed that all of the pills were gone from the small glass, but there was a milky colored liquid in the bottom of the other glass. It was obvious that she had dropped some of her pills in the glass of water. A little later, I gave her a Tylenol for some pain in her knee. I put it in a small cup and gave her a larger glass with water. She started to drop the Tylenol in the water. I decided giving her two glasses was confusing her. I won’t do that again. I had only done it because she has been dropping some of her pills and thought putting them in a small glass would prevent that. Solving one problem often introduces another.

Kate has surprised me twice this morning. I didn’t realize it, but she had gotten up while I was taking my morning walk. (I suspect that one of the pills that had dissolved in her glass last night was her Trazadone. That makes her sleep a little longer.) I walked into the kitchen and booted up my computer to check email, Twitter, and Facebook, and to write the story above. Before I got settled, Kate walked into the kitchen dressed and ready for Panera. I told her I would need to change out of my walking clothes and get her morning meds, and we could go.

That’s what we did. We arrived somewhat earlier than usual. After an hour, she was tired and wanted to go home. When we got inside, she went to the bathroom. In the meantime, I started to boot up my computer and turn on some music thinking we might go the the family room and enjoy a quiet morning. Remembering that she was tired, I went back to the bedroom to see if she was in bed. She was looking for her iPad, and said, “What can I do?” I asked her what she would like to do. She thought a moment and said, “Panera.” We had been home less than ten minutes. So here we are again. She is eating a sandwich. We’ll leave in another twenty minutes so that I can get ready for Rotary and the Y this afternoon.

Kate is especially cheerful this morning. It’s been a good morning. Recalculating has worked.

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A Pleasant Day Yesterday

We didn’t have anything special on our agenda yesterday, but we had a very pleasant day together. She was in a cheerful mood all day. At lunch she asked for some help with names. Specifically, she asked our daughter’s name. I told Jesse. Then she asked the last name. I told her Brewer. That triggered Jesse’s husband’s name, Greg. Then she asked me the name of her brother’s wife. I told her Virginia. With a little frustration, she said, “I knew that. It just wouldn’t come to me. I don’t think I am fully awake yet.”

At dinner last night, we sat in a booth where we have sat many times. On the wall is a print of the painting American Gothic. Each time we see it she asks me the name. She frequently gets American but forgets Gothic. That is what she did last night. Moments later, she asked me the name again. Over the course of our meal she must have asked as many as seven or eight times. It is clear that she recognizes her loss of names and is trying to recover it.

The surprise of the day is that we spent almost two hours in our family room after getting home from lunch. Based on the past, I expected she would want to go to Barnes & Noble pretty quickly, but she asked, “What now?” I told her that I thought it would be nice if we spent some time at home for a while and then we could go to Barnes & Noble. She said, “Okay.” I turned on some music and reviewed income tax information that I will give to our accountant this week. She got her iPad and worked jigsaw puzzles. Since we don’t do this very often, I was curious how long it would last before she wanted a change. It was almost two hours later. Then we went to Barnes & Noble for another hour and a half before going to dinner.

When we got home, I didn’t turn on the TV for the evening news. Instead, I turned on some music and read for a couple of hours while Kate worked on her iPad. It had been a very pleasant day.