Posted on

The Rest of the Story

After leaving Panera yesterday afternoon, we went directly to Casa Bella for their monthly night of jazz. It was a little different last night. The couple with whom we normally sit were unable to make it. We joined another couple who only come for the evening of jazz and not opera or Broadway. We have sat with them several times but are not as well-acquainted with them. They are a very interesting couple, and both are talkative. That works fine for me, but I’m afraid Kate was left out of most of the conversation. On the positive side, I know that she enjoyed the music.

The best part of the day turned out to be after we got home. Before we left the house yesterday afternoon, she asked me (in sign language, of course) if she should take two of her photobooks with us. I suggested that she leave them home, that she wouldn’t need them at either Panera or Casa Bella. When we got home, she picked them up from the coffee table in our family room and took them back to our bedroom. While I took a shower and got ready for bed, she started going through the photobook her brother Ken had made for her. She took a lot of time carefully looking at the pictures on each page. Frequently, she would call my attention to one she particularly liked. I was encouraged to hear her mention the names of her various family members in the photos. I like knowing that she hasn’t completely forgotten their names. This really is a gradual process, but I notice little differences like having increasing trouble remembering my name as well as her own.

I ended up getting in bed with her, and we both looked at some of the album together. In a little while, she was sleepy. We decided to put away the book and call it a day. I am glad to say it ended on this high note. I had expected jazz night would do that. As it turned out, it only set the stage while her family photos became the main event. I was relieved the day ended so happily, without any more signs of confusion.

I am also glad to report that Kate was up a little earlier this morning and in a cheerful mood. We’re back on track (and back at Panera).

Posted on

More Confusion

Kate got up from her nap right after I uploaded the previous post. She was ready to get out of the house, so we drove over to Panera. On the way, she asked me to tell her my name. Then she asked me her name. After I said Kate, she filled in the rest. Then she asked my name again. She tried to repeat it and couldn’t. When we got to Panera, she asked the name of the restaurant. Several times over thirty minutes she asked again. She also asked my name again as well as her own. Then she asked my parents names. I thought it was strange that she wasn’t working on her puzzles. I always set up the iPad with a puzzle that is ready for her. Apparently, she left the iPad inactive for so long that it went to sleep. After a while, I asked her why she wasn’t working puzzles. She didn’t realize she could. The iPad was sitting right in front of her. She hadn’t noticed or noticed and didn’t remember how to start it. I turned it on for her, and she is working the first puzzle, and we have been here almost 45 minutes.

Although she has asked almost all of these same questions other times, she seems especially confused today. Each time she asks for the same information, I get the impression that her lack of memory is troubling her. I hope we aren’t preparing for another anxiety attack tonight. As I said in my previous post, I hope the evening at Casa Bella saves the day.

Posted on

A Slow Start on the Day

Kate was late getting up today. It was a few minutes before noon when she appeared and said she was ready to go. She was dressed appropriately for the day except that she was wearing a bathrobe over her clothes. She was carrying two night gowns over one of her arms. As we walked toward the garage, I told her we were expecting it to be hot and that she might not need her robe. She accepted that without a challenge. I wasn’t going to say anything about the two gowns. Then she started to put one of them on over her clothes. When she did that, I said, “I don’t think you’ll need the night gowns either.” She put both of them down on the island in the kitchen and off we went to lunch.

After we ordered, she seemed tired and confused. She asked me to tell her my name. Then she asked me her name. That was followed by asking if we have children. I told her about them and their families. I pulled out my phone and showed her several pictures taken with them in the past few months. As we went from one picture to another, she kept asking me who the people were. Some of that is related to the size of the photos on the phone coupled with her eyesight. Her vision in one eye is 20/60. She also has cataracts that are affecting her sight as well. I’ve been in conversations with the ophthalmologist about surgery. We had decided to wait until her next appointment in January. I am beginning to rethink that decision.

On the way home, she said asked if she could take a nap. I told her that would be fine. She didn’t waste any time getting into bed. It is now 4:15, and she is still in bed. I woke her 25 minutes ago, but she hasn’t moved. Tonight is jazz night at Casa Bella. We’ll be leaving for that at 5:30. She always enjoys the musical nights. I hope this perks her up, but then I wonder about getting to sleep tonight.

Posted on

This time I got the right answer.

You may recall that I recently mentioned we had had a strange experience at dinner last Saturday night. 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.”

At Panera yesterday, she asked the same question. This time it wasn’t in the context of something I was saying. We had both been silent when she said, “You know what I’m thinking?” This time I took a moment to carefully consider my answer. Then I said, “That you’re glad we got married.” She smiled and said, “That’s it.” I said, “Me too.”

I felt like I had scored a victory. She often says that she is glad she married me. That is why I guessed correctly this time. I think I missed it the previous time because it followed something I had told her. The context in which she asks her questions is often relevant to understanding what she is thinking. If I can’t figure out what she wants, she doesn’t help me. She just gives up. I wish I always said the right thing. I guess that is too much  to ask for.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.