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Alzheimer’s causes behavior that is hard to explain.

From time to time, I have mentioned some unusual (strange?) things that Kate does. I never do so with the intent of making fun but simply to report some of the things I am sure other caregivers are observing. It is also a way of giving a truer picture of what our lives are like. Thankfully, I am usually reporting more positive and normal kinds of things we are doing.

Yesterday I noted that I hadn’t found a pair of pants that she was wearing the previous day. They were somewhat nicer than her everyday pants from LL Bean. I try to keep them separate from the rest of her clothes so that she will have something appropriate to wear for more special occasions. My only update today is to say that I still haven’t found them. I am sure I will eventually. That is what usually happens. I just don’t know when.

I’ve also mentioned that she sometimes takes various things with her when we go out in the car. Yesterday when we were leaving for Barnes & Noble, she picked up 2 baseball caps she wears when working in the yard and an apron. She just threw them in the backseat of the car. That’s where they remain.

Today as we were leaving for lunch, she was carrying an extra pair of shoes and two pair of socks. I noticed that the shoes were brown and not the black ones I had put out for her. I asked if she would like the black ones. She said she would get them later. I walked back to our bedroom to get something else and picked up the shoes and brought them back to her. She put them on. Then we walked to the car. She was now carrying the shoes she had just taken off as well as the other ones she had in her hand. She brought them as well as the socks to the car. When I return home to relieve the sitter, I will take them as well as the baseball caps and apron and put them back where she got them.

I have to believe there was some signal in her brain that led to her thinking she should take them with her. I’ll never really know.

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Reading to Minimize Stress

A few months ago, I wrote a post about my personal efforts to minimize the stress that often accompanies caregiving. That particular one focused on exercise. I noted that I have been involved with exercise for many years, most of that in connection with my thrice-weekly visits to the Y. After Kate’s diagnosis, I added walking around our neighborhood the other four days of the week. More recently, I have increased my walking to seven days a week. Even more recently, I have increased the length of my walk from an around 2 ½ miles to 3 miles. Another way in which I have dealt with stress is reading.

My life with reading could be described as having lots of ups and downs. In elementary school I was an avid reader of The Hardy Boys series and the orange-bound biographies of Americans of note. Most of my reading after that was devoted to the assigned reading in connection with my class work. After graduate school, I found myself immersed in the books and articles that related directly to my early career as a professor of sociology and social psychology. Later on, when I started my own market and opinion research company, I was involved in a good bit of travel. I tended to read while in airports or on the plane. Much of that reading involved newspapers and periodicals.

When I retired to spend more time with Kate, I decided to incorporate reading for pleasure as an essential part of my life. I don’t mean that I didn’t enjoy the things I had been reading before, but most of my reading was related to my professional interests. I’ve always had diverse interests in my personal reading choices. Now I had the chance to pursue a richer variety of topics than I had done before.

Kate had experienced sleeping problems prior to her diagnosis. She was a former English teacher and librarian and had been a reader since childhood. It was only natural that she would think of reading when she woke up at night. She decided the easy way to do that was to listen to audio books. I gave her an iPod, and she signed up for a subscription with Audible for two books a month. Gradually, she started listening when she went to bed each night. She kept that up for years until her Alzheimer’s made it too difficult, and the Trazadone she was taking provided her with a good night’s sleep.

I took my cue from her. I took out the same subscription with Audible and continue to the present. I realize that the audio format is not for everyone, but it works for me. I was also influenced by a problem with my eyes. I have a severe dry eye condition and find reading, especially in print form, to be difficult. For a while I used a Kindle. That worked pretty well. Then I switched to the iPad, but I prefer audiobooks. I discovered that I like having someone read to me. Listening can be very powerful. That is especially true for books that involve a narrator’s telling the story. For that reason, I find books like The Reader to be an especially good in audio format.

Since I didn’t have a sleep problem, I was able to choose what I thought was the best time for reading (listening). That was when I am at the Y or walking. In addition, I continue to read on my iPad. The books I read on the iPad are those that I may want to refer to later. I listen to books about 8-10 hours a week and read on the iPad somewhat less than that. That means I don’t read a lot, but it does add up over time. Since Kate’s diagnosis 7 ½ hears ago, I’ve listened to more than 150 books. In addition, I have read 60-70 on my iPad, over thirty of those by caregivers or people with dementia. I like having those on the iPad. It is much easier to go back to specific parts of a book that way than with the audio version.

As for what I read, my books represent a wide assortment of topics, but they are heavily oriented toward non-fiction. Periodically, I try to correct this imbalance. I have read more than a dozen of Donna Leon’s books. She is my favorite light fiction writer. I have also read quite a few of Daniel Silva’s and Louise Penny’s books.  Two works of fiction that I have particularly enjoyed are Hans Fallada’s Every Man Dies Alone and Ann Patchett’s Bel Canto.

Among the works on non-fiction I have read and enjoyed during the past year or two are The Inheritance, Fifty Inventions That Shaped the Modern Economy, The Death and Life of the Great Lakes, Alone, two biographies by Walter Isaacson (Leonardo da Vinci and Steve Jobs), Why Buddhism is True, The Great Quake, Tell Me Everything You Don’t Remember, Sisters in Law, The Immortal Life of Henrietta Lacks, and Erik Larsen’s In the Garden of Beasts

I have found that reading helps to keep my mind on a variety of things that are well beyond my daily routine. Books are a great source of entertainment, education, and stimulation. In addition, I never run out of new material. It wouldn’t work as my sole method for addressing stress, but it plays an important part in my overall strategy.

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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.