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Success With the New Sitter

Last week I was very disappointed to learn that we were losing our Monday sitter. She had been my favorite. A couple of weeks ago, we had a new sitter, Cindy, when I had a luncheon to attend. She had an easy job since Kate was still in bed when I got home. She had been asleep the entire time I was gone. I did introduce her to Cindy before I left, but they had no chance to get acquainted.

Cindy got the assignment to sit with Kate yesterday while I went to Rotary and a United Way meeting. I was comfortable having her but was a little uneasy as I wondered how Kate might respond to someone she didn’t know. I decided it would be best to wake her early enough to get her dressed and ready for lunch. Then the two of them could go to lunch at Panera. That would give them a little time to get acquainted.

I didn’t say anything to Kate about my leaving or Cindy’s coming. I waited until she arrived. I met her at the door and walked her to the kitchen where Kate was taking her morning meds. I introduced Cindy to Kate and told Kate that Cindy had come by to see her a couple of weeks ago, but she was asleep. I went on to say that she was back and that they could go to lunch together. Kate received her just the way I would have wanted. She was happy that they could go to lunch.

Then I told her I was going. She said, “Why don’t you eat lunch with us?” I told her it was my day for Rotary. She gave me a slight frown and then turned to Cindy and said something like, “Well, we’ll just have good time ourselves.”

Before leaving, I set up the TV to watch YouTube videos of the Tabernacle Choir. When I returned home, they were watching intently. This is one of the few times that I have used the video cam to check on things while I was away. I checked between Rotary and my United Way meeting. They had apparently just gotten back from Panera and were starting the video. I checked again after my UW meeting. They were still watching.

When I got home they were both sitting in front of the TV. They had been well-entertained by the music, and I was feeling great that it had been a successful first visit with this sitter. Today I will confirm with the agency that she is to be our regular Monday sitter.

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A Special Moment Last Night

Before going to bed last night, I put on several YouTube videos. One of them was Andrea Bocelli singing “The Lord’s Prayer.” Kate was immediately engaged and put down her iPad to listen. The next one that came up was Alfie Boe singing “Bring Him Home.” The YouTube algorhythm must have selected it because it is a prayer from Les Misérables. I was seated in the chair by my side of the bed while she sat in a chair on the other side. I looked over at her and saw that she had closed her eyes and put her hands together in front of her in a praying position. She was fairly still, but I could see some physical responses in rhythm with the music. She was hanging on every word he was singing. She loves the highest note on the final word when he ends with the plea “Bring Him Home” (as does everybody else).  Before he got the word out, she was already mouthing it silently. She, too, was praying. I was touched. Music is bringing her so many special moments.

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Kate’s Intuitive Abilities

I talk a lot about deriving much of our pleasure from Kate’s intuitive abilities. That frequently involves music and our social activities. There are lots of other signs of her intuitive abilities that I don’t say much about. Let me tell you about a few experiences that occurred yesterday.

She got up to go to the bathroom shortly before 6:00. She was especially groggy. I walked with her to show the way. I asked if she wanted fresh underwear. She said she did. Then she walked over to the sink to wash her hands. She turned to me, smiled and said something I can’t quite remember. I know what it meant though. It was “We didn’t envision this when we married.” She not only retained her sense of humor, but she was able to grasp the situation in a way that I might not have thought she could.

As I walked her back to bed, she smiled and said, “Are you havin’ fun yet?” She thanked me as I pulled the covers over her.

Several hours later as I was putting drops in her left eye (her cataract surgery is tomorrow.), she had trouble understanding that I wanted her to tilt her head back to make it easier. She got a little irritated with me. I told her I was sorry, that I was just trying to help her. She said apologetically, “I know you were.” She was sorry for the way she spoke to me. This took an understanding and appreciation of what I was trying to do, and she felt she had hurt me and was sorry.

She was up at 9:30. That gave us time for a trip to Panera for her muffin before lunch. We hadn’t been seated long before she asked my name and hers several times pretty close together. We got into a conversation about our parents, mine as well as hers. That led her to say how fortunate each of us has been, not just in the parents we had but in so many other ways. She began to talk about people who haven’t been as lucky. As she talked, she got tears in her eyes and choked up. She couldn’t continue her thought. She was overcome by emotion. She has never been one to shed tears easily. Alzheimer’s has changed that.

She was finishing up her muffin when I said we would be going to lunch in a while. She said she was full and might not want to eat much. Then she said, “Knowing me, I might change my mind as soon as we are there.” I was struck by that because it is so apt. She frequently says she won’t be able to eat or eat much before going out but changes her mind once we are there. She has remarkable insight about her own personality as well as mine even when she can’t remember either of our names.

She was very talkative at Panera, and, at lunch, we had another great conversation. She (we) talked almost the entire time we were there (almost two hours). Only half of that conversation was about Frank Sinatra. <G> Just kidding, but I didn’t even try to count the number of times she asked his name. One time after I told her, she said, “I don’t know why I can’t remember his name. I ask you all the time.” I said, “But you don’t forget that you don’t like him.” She agreed.

Like other conversations, this one focused heavily on feelings, things that don’t require a memory of facts. Her parents and mine figured in the conversation. We expressed our feelings about them. We are both grateful for our parents and the way we were raised.

One time when our server stopped by to check on us, I mentioned how much we had enjoyed the Chicken Marsala. In a few minutes, she returned with the chef (a woman) who had prepared it for us. We thanked her. She said to let her know whenever we are there and that she would take care of us. Kate and I were both touched that our server thought to introduce us.

After the server walked away, Kate said, “I like you.” Before I could say “I like you too,” she said, “I like you a lot.” That’s when I got to say, “I like you a lot too. In fact, I love you.”

On the way home, Kate kept saying how much she enjoyed the CD I was playing. It is one I bought several years ago in Memphis for $5.00 when we were visiting Jesse and her family. It’s a compilation of songs from a variety of Broadway shows. She likes it so much that it is almost the only one I have played for the past few weeks. I am amazed that she remembers so many of the words, especially the key phrases. I know from things I have read about music and people with dementia, Parkinson’s, or strokes that music can facilitate the words as well as the music; however, hearing her sing the words always surprises me.

An interesting sidelight is that this CD does not provide the names of the singers. Every time a song plays, Kate asks me to tell her who is singing. Each time I tell her I don’t know, and the CD doesn’t give any of the singers’ names. That is something she never remembers, so she asks her question a lot going to and from place to place.

When we got home, I built a fire and we spent the afternoon relaxing. Kate lay on the sofa and frequently talked about the things she could see and liked both inside and outside. As usual, she mentioned the trees that she could see through the skylights. It’s interesting that she responds to the trees in the same way she did before they shed their leaves for the winter. She often says, “I love all the green.” She also talked about the music, the fire, and a painting we had purchased on trip to Quebec City years ago.

The entire day she was especially appreciative, not just for my care for her but for all of her experiences. Her intuitive abilities were not only alive and well but very active.

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Thought for the Day

Yesterday morning I saw this tweet from Judy Cornish (The Dementia Handbook). She is a vocal advocate of the importance of tapping into the intuitive abilities of people with dementia. I believe this particular tweet is also relevant for our other social relationships.

Whenever I am with someone experiencing #dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy.

Cornish also quotes Maya Angelou who said, “People will never forget how you made them feel.”

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Three in a Row

The other day I mentioned one of the statistical measures related to my blog. The first three years following Kate’s diagnosis, I averaged 64 entries a year. In 2018, I had 549. That was up 232% from 2017 when I made 236 entries and 412% over 2016 when I made 133. I suggested that this increase was mostly related to the actual changes in Kate’s Alzheimer’s. I simply had more to write about.

In that post I also mentioned that I have a few other measures as well. The only other one I think is especially relevant involves the various categories to which I assign each post. I assigned the most, 246,  of the 1361 posts to the category “Good Things/Good Times.” That is 18.1% of all my posts and contrasts with only 62 (4.6%) I coded negatively (“Bad Times).

I should add that many of the other posts contain specific items that could have been assigned to either category. I chose, however, to assign a post to one of these categories when I thought the central message was either “Good” or “Bad.” I don’t intend to go back through all the posts and get a more precise measure of the ratio of “Good” to “Bad” incidents, but I suspect I would find the figure for each would be closer together. That’s because I have included many specific symptoms that I might want to consider negative. I believe the way I put posts in categories is a stronger measure of my “feelings” about the way things are going even with the negative things than happen all the time. Let me give you an example.

Yesterday Kate and I went to our usual Saturday lunch at the Bluefish Café. It wasn’t long after we took our seats that Kate asked, “What is my name?” When I told her, she wanted to know my name and then how we were related. This is the kind of conversation that has become commonplace. I suspect most people overhearing our conversation might interpret it as a bad thing, very sad. That’s the way I felt the first few times she was unable to remember our names. Even now, I view her memory loss as sad; however, I interpret the whole conversation quite differently. We were having a good time. There were things she wanted to know, and I was glad that I could be the one to tell her.

After we had eaten and paid the check, we had an especially tender moment. It started when she wanted to know her parents’ names. Then she wanted me to tell her something about her mother. We held hands across the table as I told her she had a very special mother and explained why I felt that way. I talked about her kindness to people and her years as a volunteer teaching adults to read. I also told her about her mother’s having taught Sunday school for almost forty years and what a good friend she had been to so many people. She loved hearing about her mother. When I paused, she said, “Did I get to know her?” I told her she did and that her mother loved her dearly. I reminded her of photos we have of her and her mother and that the love was visible in mother’s smiles. Then I said, “And the best thing is that when she was no longer able to take care of herself, you got to care for her during the last five and a half years of her life.” I told her about her managing a staff of paid caregivers, coordinating her medical care, as well as preparing meals. She was so happy, and, as so frequently happens these days, her eyes filled with tears. I was touched by her response. It does make me sad that her memory of her mother is virtually gone, but it makes me happy to know that her feelings for her are still alive and that I have the opportunity to fill in the details she no longer remembers.

If that were all that happened, I would say we had a very good day. As it turned out there was more. When we got home, she asked what she could do. I suggested we spend some time together in the family room. I mentioned her photo books and that she could look through some of them. I pointed to the “Big Sister” album on the table between our two chairs. She picked it up and sat down to look at it. I stood behind her as she flipped the pages and read the text for her and identified the people she did not recognize. She was entranced and went through the entire 140 pages. Her brother Ken will be glad to hear that this is a gift that keeps on giving. It is a gift to me as well. I enjoy the photos, but I am especially happy just being with her in such happy moments.

Yes, we’ve had three good days in a row. I guess you know the category in which I’ll file this one and why. <g>

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Another Good Day

I guess I was so happy about our previous day that yesterday’s posts didn’t mention that Kate showed almost no signs of a cold. Wednesday was her best day in the past two weeks. I was relieved that we had avoided anything more serious. Yesterday she was even better.

It was the second day in a row that she got up early, took a shower, and went back to bed. This is a time when I could have let her stay in bed longer, but I wanted to have lunch with her before the sitter arrived. I was glad I did. We had a nice lunch and were back home in time for me to set up the TV in our bedroom with YouTube videos. I chose Andrea Bocelli. I also showed Mary how to search for other videos if they wanted something else. Kate said she wanted to rest a while and got in bed.

While I was at the Y, I checked the video cam several times. Each time they were still in the bedroom watching videos. The same was true when I returned home four hours later. Kate had been up a while and was fully engaged with the music. So was Mary.

Setting up the TV for YouTube or DVDs before I leave has become a regular thing now. That seems to have replaced their afternoon trip to Panera. I still mention the possibility of their going to Panera, but Kate isn’t responsive to that. Yesterday was an exception. She was excited about going but wanted to rest first. After resting, she only wanted to watch Bocelli.

Because my primary focus is on Kate, I don’t say much about other things I do while the sitter is here. Of course, I have my Monday Rotary meeting and my trip to the Y on Monday, Wednesday, and Friday, but I also meet my friend Mark Harrington every Friday afternoon at Starbucks. We hadn’t met the past two weeks because of Kate’s cold. In both cases, I had forgotten to let him know I wasn’t coming. That’s just one of the things I discover that I have slipped up on lately. I find more things slip through the cracks than they used to. I know some of that might have occurred just because of my age, but I feel sure that my responsibilities for Kate also play a large part.

Anyway, it was good to see Mark again. He’s an interesting man, and we always have a lot to share. He is the one who takes care of the technical issues in connection with the blog. Right now he and I have been working on a book I am editing. The first half consists of three and a half years of emails that I wrote under my dad’s name after his stroke that left him unable to use his computer. The second half is devoted to over 100 pages of Dad’s own biographical notes that he had written for a writing class he attended several years prior to his stroke. We’re close to printing time now. When it is finished, I plan to give copies to the family and a few close friends. That would have happened long before now if I hadn’t found it difficult to work in with my other responsibilities.

Every few weeks I also meet with a church friend whose daughter was diagnosed with frontotemporal dementia in her fifties. We met for coffee Wednesday afternoon. Our experiences are vastly different. Talking with him underscores how fortunate Kate and I have been not to have other complicating factors beyond the illness itself. Despite our differences, we also have a lot of common experiences. I enjoy being with him. I hope our lack of complications don’t make it less enjoyable for him.

While we were out for our Friday night pizza, we bumped into one of my long-term clients and his wife. They sat down with us and chatted about forty-five minutes. It was good to catch up with them. Kate also enjoyed it. These experiences continue to reinforce my belief that the primary benefit of eating out is that it is a social occasion. Most importantly, it is the type of social occasion that Kate handles quite well. The time is short. We exchange pleasantries and are on our way. It is good for her and for me.

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We Take So Much for Granted.

Most of the things we do during the course of an ordinary day we do without even thinking. We’ve learned to do what is appropriate in the vast majority of situations. We come to this through explicit and implicit training from parents, teachers, and everyone else around us. To be sure, the daily news is filled with the most egregious violations of customs or the law, but most of us abide by the norms most of the time. It’s through our rational ability that we learn to follow the rules for both big and little things.

As I have noted before, dementia robs a person of that rational ability. People with dementia often say or do things they would not have done prior to their disease. We generally understand this, but caregivers are always facing new things we didn’t expect. That happened to me tonight.

As Kate prepared for bed, she walked into the bathroom. She saw a tube of toothpaste, picked it up, lifted her arm, and motioning with hand signals asked if she should put it under her arms. I explained that it was for her teeth. Then I showed her the deodorant and told her that was for under her arms. Moments later I saw that she had put toothpaste on her neck.

Although I was surprised, Now that I have reflected a bit, I find her question understandable. This is a sign that she is reaching another stage of her Alzheimer’s. Things like brushing her teeth and using deodorant are regular habits that we do automatically. That is a strong habit for Kate and has lasted a long time, but even that is now fading away. Earlier in the day she had given me the same hand signals without lifting her arm. That time I correctly thought she was asking if she should brush her teeth. Like most habits that weaken, the process is usually a gradual one. I am sure I will see more of this in the future.

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A Very Good Day

About 7:30 yesterday morning, the video cam alerted me that Kate was getting out of bed. I went to the bedroom and walked her to the bathroom. At first, she took my hand but then felt secure enough to walk without it. She did need me to show her the way. When she came out, I asked if she needed fresh underwear, and she did. I helped her with that, and she got back into bed. As she did, she looked at me and said, “I’m sorry you have to do all this for me.” I find it very touching when she says things like this. It makes me wonder just how much she senses the seriousness of her situation. It is clear that she recognizes she has a memory problem and that she is dependent on me. She almost never displays any sense of anxiety or distress; however, I do sometimes think that she recognizes that something is wrong with her. Later in the morning she said something else that struck me the same way.

I thought she might sleep until I woke her around 10:30 or 11:00. I was quite surprised when she had gotten out of bed at 9:30. I went to the bedroom and helped her get dressed, and we were at Panera before 10:00. This was the first time we had been there before lunch in quite a while.

It was a day when she had a lot of questions. They were all the usual ones, just asked a whole lot more. She had other questions as well. Instead of being bothered by her constant questions, I found that we had a good conversation. It was a time when she seemed eager to learn things that she had forgotten.

It began as she was working a puzzle of a picture of colorful tulips in The Netherlands. She turned it around for me to see. I said, “It reminds me of the trip we took during the tulip season.” She said, “How could we afford that?” I told her that we both had been working and had saved our money for the trip. She had forgotten that she worked and asked me what she did. That led me to tell her about her majoring in English and teaching English for three years and becoming a school librarian after getting her second master’s degree. She was quite interested and, at no time, did I sense that she remembered any of this.

The conversation took various turns as she asked questions that redirected me from one thing to another. She asked me to tell her about her parents. She continues to hold strong feelings (all positive) about them, but almost never recalls their names. She didn’t yesterday, but she sometimes asks me if I knew them.  As the conversation moved along, she asked where we were. I told her we were in Knoxville, Tennessee. She asked me to repeat it slowly two or three times.

Then she said, “I’m smart, you know, but I’m stupid.” I was surprised and asked what she meant. She said, “Forget it.” I told her I really wanted to know. Then she said she didn’t know what she meant. I asked myself, “Could she maintain a long-term sense that she is smart but recognizes how bazaar it is for her to repeatedly ask questions about things she should know?” I would love to know exactly what she thinks and feels.

We went back home for a short break before going to lunch with our pastor. This, too, was quite a good experience for both of us. He and I did most of the talking, but Kate also enjoyed it. His daughter is an undergraduate looking at a possible career in neurology. We talked a lot about the brain. I am sure much of this was puzzling to Kate, but many of the things we said involved music and its effect on people with Parkinson’s and other brain issues. There were plenty of things that she could appreciate even if she didn’t fully understand.

Kate  had a massage at 3:00, and we went to Casa Bella for opera night at 6:00. Last night’s program and musicians were especially good. Kate loved the evening. What a nice day we had. Who would have guessed this would be possible eight years after her diagnosis? Her rational abilities are very weak. But her senses are still working. They provide great pleasure for both of us.

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Grasping to Remember

Kate’s memory has been worse this week. When she got up day before yesterday, her memory was as bad as the two previous days. She repeatedly asked the same questions – “Who are you?” “Who am I?” “Where are we?” She didn’t express any frustration as she asked. She did so quite naturally as though she were asking someone else where they were from.

We talked without ceasing at lunch. That is unusual. It would start with one question and lead to another. For example, I had given her our names and relationship. Then I said something about our children. That led her to ask questions about them, their names, where they live, etc. I mentioned her family, and she asked me to tell her about her mother and father. As I mentioned different pieces of information, that led her to ask further questions. That meant I kept giving her more and more information. Of course, that was overwhelming for her. It was actually a beautiful conversation because she was so interested in knowing about her family. At one point, her eyes were filled with tears as I told her about them.

When we got in the car to return home, she said, “You’re probably going to have to tell me all this again.” She said she would never be able to remember. I told her that would not be a problem, that I would remember for her. I asked if she remembered the nickname she had given me. She didn’t. I told her it was “MM” for “My Memory.” She not only didn’t remember, she didn’t understand what it meant. It took a while for her to understand.

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An Indicator of Change

Numbers have played an important role in my professional career in market research. The vast majority of the reports and presentations of research findings were filled with charts and tables containing lots of statistics. As a result, I have often yearned for a chart that would summarize our experiences since Kate’s diagnosis eight years ago.

That would have been possible if I had kept statistical records along the way. During the early years after the diagnosis, I didn’t even think of doing that. As time progressed, I felt I didn’t have time to keep an accurate statistical record. I settled for what we researchers call a qualitative approach. I simply describe in words what our lives have been like. Most people can relate to that more easily anyway.

The problem is that words don’t always convey the changes that occur over time. For example, I find that my early posts talked about how short her memory was. Some of my recent entries say essentially the same thing, and yet I know that her short-term memory is vastly shorter now that it was then. I do try to call attention to symptoms the first time they appear. I also try to give some approximate time indicators. For example, I often say that Kate’s sleeping pattern started changing during the spring of last year or the approximate number of months since the pattern started changing. For the most part, however, this blog consists almost entirely of my descriptions of our experiences.

Having said this, I have discovered that launching the journal as a blog one year ago has provided statistical data. Only one of those gives me much information that relates to our experience with Alzheimer’s, and it is very limited. The WordPress software I use organizes all of the posts by year. I put that together in the chart below. It doesn’t begin to do justice to what has gone on the past eight years; however, it does show how the progression of Kate’s Alzheimer’s has affected my writing.

During the first three years (2011, 2012, and 2013), our lives didn’t change much. I didn’t have as many things to write about. That began changing in the years 2014, 2015, and 2016. I remember that 2014 was the year I felt I should tell our children and close friends about Kate’s diagnosis. Early that same year, we went to New Zealand. I knew then that our traveling travelling days were numbered. It was becoming increasingly difficult to manage everything on long trips. We took our last overseas trip (Switzerland) in 2015. In 2016, I saw more signs of change. I believed that our annual trip to Chautauqua would be our last. Fortunately, we were able to make one more trip in 2017. That year I wrote 77% more posts than the preceding year. The big jump occurred last year. Our lives changed substantially as did the number of my posts. They were up 132% last year. Of course, that was the first year of my blog. I know I was more diligent in writing. Even with that, however, I have always tried to write when I had something I wanted to say (not necessarily what readers might want to hear <g>). In 2018, that happened more often.

So, what is in store for 2019? The answer is I don’t know. As in previous years that will depend on what happens next. If I were to guess, I would say that the posts will level out for a while and, possibly, decline. Through the first 36 days of the current year I am averaging one and a third posts a day. I expect that Kate will sleep more, and we will be less active this year than last. That might mean fewer things for me to report. As with so many things, time will tell.