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Another Attack. Sundowners?

We had had a very pleasant evening after dinner last night. We were in the family room for over an hour listening to music. Naturally, Kate was working on her iPad. I was writing this morning’s post. About 8:30, I told her I was going to take my shower and that we might watch the last of Sound of Music when I got out. She liked the idea. When I got out of the shower, she came back to the bedroom. She didn’t seem to know what to do. I suggested that she get her night clothes on before watching the movie. She went to her room. When she returned, she had taken off her clothes but didn’t bring her night gown or robe with her. She seemed confused and wanted to take a shower. I helped by walking her to our bathroom, turning on the shower, and getting a couple of towels for her.

After her shower, she started to put on her night gown. I got her “night-time” underwear. I went back into the bathroom to get my nightly medications. When I returned, she hadn’t put on the underwear or her night gown, and I couldn’t find the underwear anywhere. I still haven’t. I just got another pair. She seemed anxious as she tried to dress for bed. That ultimately developed into something more emotional.

She wanted me to dry her back which I did. I asked if she wanted me to help her get dressed. She said she did. Then she said she couldn’t live without me. As she often does, she added, “No, I really mean it. I couldn’t live without you.” I don’t remember her exact words, but she said she couldn’t do anything right.

Although it crossed my mind, I didn’t say anything about her having Alzheimer’s. Instead, I spoke very calmly to her and told her I was going to help her. I put my arms around her and said, “Let’s just relax a minute. Take a slow, deep breath. You’re going to be fine.” After holding her for a few minutes, I asked if she would like to watch the Sound of Music. She said she did. First, I helped her with her night gown. Then I suggested we get into bed and watch the movie. She said she wanted to sit in her chair and work on her iPad. She said, “That relaxes me.”

Right after that, she picked up her iPad and got into bed and started to work on a puzzle while I started the movie. Very quickly she became engaged in the movie and put the iPad down on the bed. We both watched the remaining part of the movie, almost an hour. She relaxed and enjoyed it. The attack was over.

The first time this happened I wondered if this might not be an example of sundowners. Now I have a stronger suspicion that might be what is happening. That doesn’t really explain it. It just gives the behavior a name. If this becomes a habit, it will make a radical change in our evenings. That has been the best time of day for us for several years. I think it is because we have no further obligations after dinner than relaxing and getting ready for bed. We are both very much at ease during that time. That is a time I don’t want to surrender easily. If this occurs again, I plan to do the same as last night. I will respond very calmly and with compassion. That seemed to do the job last night. That along with music might carry us a long way.

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Good Morning.

One of my friends used to say that two of the most underused, but important, words are “Thank You.” I’d like to make up for that this morning by thanking you for being here. I am very unclear about how many of you are out there. I do know that some of the people I am closest to check in from time to time. There are quite a few others I don’t know at all. I have two counters that are supposed to tell me the number of visitors, but they give me such different numbers that I don’t know what to believe. It appears, however, that about half of the visitors are from the United States. The rest represent about 25 countries.

I started this journal the day of Kate’s diagnosis on January 21, 2011. I did it because I wanted to document our story. I didn’t have any immediate plans to make it public. I thought it might some day be of some interest to our children. As time passed, I began to think our experiences might benefit others as well. I don’t consider myself to be a writer, and my journal became too big for a book. That led me to think about a blog. The good thing about this format is that people can read as much or as little as they want.

What I didn’t anticipate was how I might feel as the blog unfolded. I’ve spent the better part of my adult life avoiding every opportunity to write. I didn’t anticipate that I would feel any obligation to make regular posts; however, I know that some of you are checking in at least periodically. Occasionally, that causes me to feel a little bit of pressure to write something every day. When I skip a day, it sometimes crosses my mind that you might wonder if everything is all right. At least one person has asked me about that. I intend to stick to my original plan. That is, I’ll write when there is something that I would like to have “on the record.” If I don’t have anything, I’ll wait until I do.

One of the things I can’t predict is how the rest of Kate’s journey will unfold and how that might affect my writing. If you’ve been here before, you know that we’ve been very fortunate. I don’t mean to minimize what I feel is the hardest part for me as a caregiver – the sadness I feel as I watch her gradually lose so many of her abilities to do everyday things. I have found, however, that she and I have adapted very well. The biggest surprise of all is that we are able to continue living what I think others would think of as a normal life. As a reader, you know that is far from the truth. What is the truth is that we really enjoy ourselves in the midst of the most difficult struggle we’ve ever faced. We are quite active, and we enjoy each other as much or more than at any time in our 55 years of marriage. What more could we want? Well, we could want Kate’s diagnosis to have turned out to been an error. We know that’s not possible. Our approach from the outset was to make the most of whatever time we have left. We’re doing that now and plan to continue that as long as we are able.

Thank you for being a part of our journey.

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A nice day, but not quite up to the previous two.

Yesterday morning was just about perfect for a walk. It was slightly cooler with lower humidity than normal. When I came back, I fixed breakfast and then sat on the patio about twenty minutes meditating on the beauty of the gentle wind blowing through the trees on the property of the neighbor behind our house. She has forty acres, most of which is wooded. Kate and I have spent many late afternoons looking out over the trees. I’ve often remarked how fortunate to have a neighbor like that. Then I consider the fact that our house sits on what was on her property until she sold it for development. If the price is right, she might sell more of her land. I think we’re safe though. I don’t believe she wants her neighbors any closer to her house. We can only see traces of it during the winter when the leaves are off the trees.

Kate slept late yesterday morning. In fact, she was so late that we skipped Panera and went directly to lunch. She wasn’t at all depressed, but she wasn’t nearly as cheerful as she has been the past two days. We were pretty well-occupied most of the day.  We had less than an hour at home after lunch before going to the Bijou to see a performance of Memphis. We had seen it on Broadway during its initial run several years ago and enjoyed it although it isn’t in the same league as Les Miserables or Fiddler on the Roof. We sat on the front row. I think that may have been a little much for Kate. It was quite loud and fast-paced. She was impressed with the quality of the performers but not taken with the music.

From there we went to dinner and then came back home for the night. I started the DVD of Sound of Music where we had left off the previous night. Kate was too tired to last long, so I turned it off for another time.

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Another Good Day

It really makes me happy to say we had another good day yesterday. First, Kate was up in just as good a mood as she did the day before. She was alert and cheerful from the beginning to the end of the day. She was also up a little earlier. I liked that because it gave us more time together.

She always enjoys watching children wherever we go. That is another pleasure deriving from her intuitive abilities. There are limits, however. She loves watching them play and explore their surroundings. She is taken with the things they say, especially when they express they wants to their parents. She was enjoying one little boy who wanted to run around. The mother tried to restrain him. That was cute until the boy screamed. Kate finds screams or any sudden noise startling and offensive. When the boy screamed, she jerked in her chair and said, “Now that’s not cute.”

We had lunch at the Bluefish Grill. It is almost 25 minutes away from where we live. On the drive, I always play music that I think she will enjoy. Yesterday I played selected songs from Les Miserables. Once again, she loved it. I played another album on the way back. She loved it as well.

We spent almost two hours at home after lunch. Kate went through an old photo book of her family. Then she worked jigsaw puzzles on her iPad. Of course, I had music that we both enjoy playing all the time. It was a pleasant time. Then she was ready to leave the house. We don’t often stay here for more than a couple of hours. There was still a good while before dinner, so I took her to Marble Slab for ice cream. We had stopped there earlier in the week. It is next to Panera, and we love ice cream. It’s surprising that we hadn’t been there in almost three years. I don’t intend to wait so long again. Then we went to Barnes & Noble where we remained until dinner.

We had a strange at dinner. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.” We went on with our conversation and had a good time.

She was unusually talkative last night. She talked mostly about us and our marriage, how happy we had been, how well-matched we are. That continued after we got home. She talked about how comfortable she felt with me and how much she liked being with me no matter what we are doing. I told her I felt exactly the same way about her.

I am happy to hear her talking and being so expressive. At the same time, I keep wondering about what is motivating her right now. I sense that she feels her world is getting smaller. She remembers fewer things, and that increases the value of the things she does know and can appreciate. That leads to the conclusion of our day.

We had started watching a DVD of Sound of Music the previous night. We had only watched about forty-five minutes of it before she was sleepy. We watched another hour of it last night. She loved Julie Andrews and talked about her looks, smile, and singing but couldn’t remember her name. She repeatedly asked me her name. I reminded her of the time she was at the Jeu de Paume and saw Julie with her daughter. She had no memory at all.

She loved the scenery in the movie as well as the acting. She was talking during the movie. At one point, she said, “I know this is silly, but I feel like God sent you to me.” I said, “I know what you mean. I feel the same way about you.”

A few minutes later, she said, “You know, you give me energy.” It didn’t last though. She was sleepy. We decided to stop the movie right there and pick it up tonight. She had had a good day. So had I.

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A Very Good Day

Kate was up a little before 9:00 yesterday morning and in an especially good mood. When I mention her good mood, I am a little concerned that you might think that she generally wakes up in a bad mood. That’s not the case. Typically, however, she is slow to wake up. That has been her pattern throughout our marriage. She is generally a little groggy and not ready to talk.

This morning I went to the back of the house to see if she was awake. She had just gotten out of the shower and was sitting on the bed. She was about to put on a pair of pants when I walked in. She was quite cheerful and said, “You came in at just the right time.” She pointed to her back. I thought she wanted me to scratch it. Just yesterday, she had asked me to do that. It turned out that she wanted me to dry her back. I said, “I sometimes misunderstand what you want.” She smiled and said, “That because you’re not a girl.” I said, “Well, I know that sometimes presents a problem.”

After drying her back, I started to walk out of the room. She said, “Don’t go yet.” She was trying to figure out which way to put on her pants. It is increasingly a challenge for her to put them on so they are not backwards. She wanted to make sure that I was there to help her if she didn’t get them on right the first time. While she was doing that, I asked if she would like me to get a top for her. She did. I showed her one that used to be a favorite of hers. She didn’t want that. I got another one that is new. She liked it but then decided it was too dressy. I took it back to hang up and select something else when she said, “Why don’t you just let me do it.”

What I want to convey about this whole exchange between us is that Kate was quite cheerful and even a bit playful. She wasn’t really upset that I was offering help. In fact, she was seeking my help. In the end, however, she felt sure enough to get her own top. Interestingly, it was the one she had worn yesterday. I had just picked it up off her chair in our bedroom and hung it back in her closet. I’ve noticed that she seems to gravitate to things she has just worn.

When I first walked in on her this morning, I noticed that she had gotten out 4 pair of socks. They were all black, so it didn’t seem like she would have taken them out to decide which to wear. That’s just another puzzle. That reminds me that yesterday she brought two extra tops with her when we went out for dinner. They’re still in the car. When we went to dinner last night, she took a bra and two wash cloths she had used during the day.

I have often commented about the importance of music to both of us. I don’t believe I have said anything about the things she sees that also give her pleasure. For example, at Panera this morning, she turned her iPad around to show me the puzzle she had just finished. It was a black and white kitten surrounded by a ring of multi-colored flowers. She said, “Isn’t that beautiful?” She especially likes the ones with kittens. I got one set that has fifty puzzles with kittens. There are several that she especially likes. She often comments about how cute they are.

It’s not just the beauty in her puzzles that she likes. She loves all the greenery this time of year. The lot behind us is heavily wooded. She loves sitting in our family room and looking out on the trees. As we drive around town or out of town, she notices “the green” on either side of the road. It is interesting to me that she takes more interest in the green trees and shrubs than the spring flowers which usually get the most attention.

We had a good time at lunch. I said something to her about the boys’ soccer team that is trapped in the caves in Thailand. She was quite interested and wanted to know more (as she was and did the previous time I brought up the topic). I pulled out my phone and read her a news report. She probably asked four or five times where this was happening. This is a good example that her interest in what I have been calling rational thought (names, facts, and figures) that her Alzheimer’s has affected. She derives most of her pleasure from her experiential world. She literally lives in the moment and enjoys herself; nevertheless, she retains a normal intellectual curiosity. In the earlier stages of the disease, she expressed a good bit of frustration over her inability to remember. Except for her anxiety attack a couple of weeks ago, she hasn’t shown any frustration in a good while.

It pleases me that she still has her interest in what’s going on in the world around her. I frequently explain (briefly) events that are going on in the news. She wants to know, and I assume that in the moment I explain them she is satisfied. Neither the memory of the event itself or my explanation lasts more than that moment. Yet, I take it as a good sign that we can have these conversations.

We enjoyed ourselves so much at lunch that I hated to leave her with the sitter. We got home with enough time for us to sit down together in the family room. A short time later Mary arrived. I wondered if Kate would feel as regretful as I that she was here and that I was leaving. I needn’t have been concerned. Kate greeted Mary just as naturally and warmly as I would have wanted.

The best part of the day came after we returned home from dinner. We went to the family room where I expected her to begin working on her iPad. She did take it to her chair, but she also picked up the photo book that her brother Ken had made for her back in May. It’s over 140 pages filled with pictures of their lives from birth through May  when we were together with them in San Angelo. It was just this past Monday that the other sitter, Anita, said Kate had taken a long time to go through the album with her.

I was taking care of a few household things while Kate began to look through the album. Periodically, she called me to look at a picture. She was really engaged. The amazing thing is that she spent a full two hours going through the book. She went through it once and then started over again. She only stopped when she was getting sleepy and wanted to get ready for bed.

This may seem like an ordinary event, but the only other thing I have observed that occupies her time for that long is her iPad. She sometimes spends as much as eight hours in a day working jigsaw puzzles on it. When she was working in the yard, she could easily spend four or more hours, but she gave that up more than a year ago.

When something like this happens, I always speculate on what made her do it. Usually, there is no clear answer. That is probably the case this time, but I do wonder if her current loss of so many memories could be behind it. I am remembering her anxiety attack when she said that she didn’t know who she was or where she was. It seems likely that looking through the book gave her a sense of her connection to so many forgotten memories of her family and her history. I hope so, and I am sure that Ken made this book with that in mind. Whatever the explanation, I know that she was fully engaged and enjoying every moment she spent during those two hours. Yes, it was a very good day.

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Where did the time go?

My apologies for being out of touch today. I didn’t start this journal with the intent of posting every day; however, now that the blog is up and running, I somehow feel that I should check in more frequently. Today just turned out to be a busy day, but a good one. I’ll tell you about it in the morning.

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Eating Out (What could be new about that?)

This is a follow-up to my post yesterday morning about Kate’s eating habits. At dinner last night, something else occurred that I hadn’t mentioned. She likes a lot of Parmesan cheese on her pasta. She has been known to open the top on those ubiquitous glass containers with the metal top with holes in it and pour most, if not all, of the cheese on her pasta. There are two restaurants we visit regularly. They bring the cheese to the table in a small cup that looks like it would be about a third of a cup. When it is just the two of us, she puts all of it on her pasta though she often asks if I would like any. Knowing that she wants a lot, I always decline.

Last night, we ate dinner at a new restaurant. Because of that we ordered two separate meals rather than split as we often do. Then came time for dessert. We took our server’s recommendation and got the hot donut holes covered with cinnamon sugar and accompanied by a small cup (about 1/3 of a cup) of a caramel sauce. I served Kate two of the donuts and took two for myself. She quickly took the cup with the sauce and poured the entire cup over her donuts. They were on a small plate. The amount of sauce almost spilled over the edges onto the table but not quite.

As with the other things I mentioned in my previous post, these are inconsequential. They just make me wonder what may lie ahead. I know that some caregivers carry a small card with a message saying that their companion has Alzheimer’s and asks for understanding if they notice anything that seems strange or inappropriate. This is something that can be given to the server or anyone nearby who should be properly informed. I haven’t felt the need for a card like this, but it has crossed my mind.

I do make it a point to let some people know about Kate’s diagnosis. All of our regular servers know. In addition, on a few occasions I have told a new server. That has usually occurred when I am waiting at our table for Kate to return from the restroom. I enlist their help in seeing that she easily gets back to the table. I also make sure the people at the spa where she gets her massages and facials know. The problem there is the changes in staff. When I see new people, I try to make sure they know. To some, this may seem unnecessary, but one time I returned to pick up Kate and found that she had left. The spa is located in a strip center. I found her walking along the sidewalk in front of one of the shops. She wouldn’t have known how to get back to the spa. She probably would have forgotten she had been at the spa. You can’t be too careful. I have learned that lesson although it took several mistakes on my part.

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Enjoying Special Moments and the Power of Music

Yesterday afternoon, I was reading an author’s essay describing why she had written a book after losing her mother to Alzheimer’s. She said that she wanted to lead others toward happiness that one often misses because of the sadness that is also a part of the journey. She felt she had let that sadness prevent her from fully appreciating the “happy moments.”

Her words made me think of another experience Kate and I had with music a little bit earlier. We returned home from lunch. We sat down in the family room, and I put on an album of the last half of Les Miserables. Since we had seen the DVD and listened to the audio over the past few days, I intended to select one or two songs that I knew were among Kate’s favorites. Once it started, I saw that she was taken by it and just let it play through to the end. Initially, she was working jigsaw puzzles on her iPad. Then she became more engaged in the music, and put the iPad down. I could see that she was moved. She said, “It’s so beautiful.” I agreed. Before the end of the finale, tears welled up in her eyes. She got up from her chair and walked over to sit beside me on the sofa. She was crying, not out of any sadness. She was solely moved by the beauty of the music. I put my arm around her. She put her head on my shoulder. We savored the last notes.

We sat quietly for a moment. I decided to put on another album I thought she would like. One by John Rutter. We continued to sit there another fifteen minutes enjoying the music. As I have said before, we have both enjoyed music together since our first date, but I believe the pleasure she derives from music has increased substantially. I am glad that we continue to enjoy happy moments like this. They have been able to override the sadness that I sometimes feel.

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Eating Out: How Long Will It Last?

This journal has been filled with experiences Kate and I have had when we eat out. I believe it has been of major therapeutic value to both of us. Sometimes I wonder how long we will be able to do this. I know there will be a time when it will be more challenging to take Kate out so much. I am hoping that is a long way off.

As I watched Kate eat a hamburger at lunch yesterday, I thought about something else that could be another problem in the long run. Previously, I have mentioned that when she eats a sandwich, she often takes off the top slice of bread or bun, picks through the various items that were between the slices, and eats them with her hands. I have stopped ordering anything with lettuce or bacon on it. She almost never eats them. I don’t understand about the lettuce, but she doesn’t like crisp things. That rules out the bacon. She may or may not eat any slices of tomato.

After taking off the top of her hamburger bun yesterday, she picked up the rest of the burger and took a bite. A couple of minutes later, she picked up the hamburger patty itself and ate it. Then she ate most of the bottom and top of the bun. When she finished, she had eaten almost all of the burger, bun, and contents. That is unusual. When she eats a sandwich at Panera, she picks out bits and pieces and leaves a messy looking plate. She doesn’t like the crust on bread and usually leaves it.

Two of the restaurants where we eat regularly serve hot bread that she likes. It is more like rolls. That means there is a lot of crust. She pulls it apart and eats everything but the crust, leaving a pile of crust on her bread plate.

Thus far, I haven’t found any of these things to be a problem. I think they are not even noticeable except to the servers who pick up our plates. Even they don’t normally watch her while she is eating. I believe she still sensitive about eating this way when we are with friends. At least, I haven’t noticed the same behavior when we are eating with them. Still, I can help wondering what might happen in the future. At the moment, I don’t plan to worry about it. Time will tell.

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Just an Ordinary Day. That’s Good.

Kate got up a little later yesterday morning. We didn’t get to Panera until just after 11:00. By that time most of the morning crowd had gone. There was only one man in the area where we sit. He is someone we see periodically. We chatted with him briefly, and Kate had her muffin while I finished up my earlier post.

From there we made our regular visit to Carla’s for lunch. It was especially crowded and, thus, a little noisy. Several of the regular staff have not been there during the past few visits. That has made a little difference in how I have felt about the place. It’s been a reminder that it is not just the food that is important. We liked our server and would be happy to have him again if one of our regulars is not available. As always, our food was good. We also saw our pastor who was having lunch with another church member. We had a nice conversation with him. Before leaving, the man who owns the building across the parking lot from my office walked in. We talked briefly with him as well. So as it turned out, we had a good meal while enjoying brief conversations with people we know.

When we got home, we had almost an hour before both of us had appointments for haircuts. Since Kate’s hairdresser retired about five years ago, we go to the same person. That’s a nice convenience. During our time at home, I put on my album of Les Miserables. After seeing how much she enjoyed the DVD, I was curious to see how she would respond to the audio version. I can’t say that it had the same impact as the DVD. Visuals really do make a difference. However, she was quite taken by it. She had been working on her iPad, but put it down on several occasions just to listen to the music. I can’t fully express the pleasure I get in seeing her respond this way. I love sharing the music with her.

When we returned from getting our haircuts, we sat in the family room and listened to more music until time for dinner. I selected a number of things that I knew she would like. I have an album of the Susquehanna Chorale singing several songs she especially likes, Danny Boy, Shenandoah, Loch Lomond, and Swing Low Sweet Chariot. I looked over at her and saw that she was softly singing with the music. Once again, I could see the power of music. As a result of my reading Judy Cornish’s The Dementia Handbook, I have a better understanding why.