An Example That What Works for One Person May Not for Another

On Monday I had gone to Rotary and to the Y while the sitter stayed with Kate. I had a little time after that and dropped by Whole Foods to connect with their Wi-Fi. While I was there, I saw a friend of Kate’s. I learned that she had recently moved in with her parents to help her mother take care of her father who has Alzheimer’s. It sounded like her father was getting along about as well as Kate. I mentioned our having binged on musical and theatrical performances as well as keeping active by spending time at Panera, Barnes & Noble, and eating out for our meals.

Kate’s friend is a former art teacher in the public schools. That led me to tell her about Judy Cornish’s thoughts about rational and intuitive abilities. I thought that with her artistic background she might be interested in Cornish’s distinction and its implications for caring for someone with dementia. She was interested and then told me her father was a retired band director. Music had been an important part of his life since childhood.

We swapped stories for a while. Then I mentioned our going to Casa Bella three times a month for their music nights. She felt her parents would enjoy the music, but she had concerns about their getting out so much. My impression was that they were not as comfortable getting out in crowds. They prefer to remain at home a good bit of the time. I realized quickly that what has worked for us was not going to be applicable to them.

I may have been sensitized to their situation because of a couple of tweets I saw in the past few days. One had said something about the importance of recognizing that we are not all alike. The other mentioned how uncomfortable some people could be when thrust into many public situations. They eat out infrequently and prefer to enjoy the comforts of home.

As we talked further, it appeared that the friend’s parents were getting along fine without getting out the same way that Kate and I have done. She said her father plays music all the time as he has always done.

I noticed one other similarity and difference from what I have chosen to do. Her mother and I share a common feeling that we don’t like leaving our spouses to the care of someone else. The difference is that I have engaged sitters to be with Kate three afternoons a week. This is a case where my head (rational ability) overrules my heart (intuitive ability). After our experience with our parents and the reading I have done on caregiving, I believe it is best for Kate if I give myself breaks. My plan for the future is to increase that care as her needs change.

Ultimately, I hope that will enable me to keep Kate at home. Time will tell if that is possible. I don’t feel I should commit myself at this time. Since Kate’s diagnosis, I have tried to be sensitive to the changes that are taking place and adjust our activities accordingly. I gave up international travel in 2015. We are now approaching the end of air travel domestically and sticking with day trips or overnight trips to destinations that are not too far from home. I am approaching the rest of our journey with an open mind with respect to what is best for the future. Right now, I believe it is best for me to keep her with me. That could change if I had any significant health issue. I am going to be optimistic.

Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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.

Frustrations of Caregiving

Since Kate’s diagnosis, I have read a good number of books written by caregivers. I have also checked a variety of message boards like those on the Alzheimer’s Association’s website and groups on Facebook. I’ve read enough to appreciate the broad range of frustrations experienced by caregivers. Most of these are directly related to the behavior of their loved ones, but some of them involve family and friends who offer their own views concerning what their loved ones need. The volume of complaints and expressions of despair have led me to spend less time on message boards. I don’t mean that I am unsympathetic to their frustrations, but I quickly found that spending much time with them conflicted with my own experiences.

My experiences with Kate have been much more positive than those of other caregivers. At least one experience we have in common is one that has not been a problem for me. Like other people with dementia, Kate repeatedly asks the same questions. “Where are we?” “What is his name?” “How many years have we been married?” I know that this is very annoying to many caregivers. This doesn’t bother me at all, and I don’t know that I have a good explanation for why we respond so differently. I can only say that I just recognize that it is impossible for her to remember. It seems hard to imagine my being annoyed with her for something that is so far beyond her control.

This doesn’t mean that I am not frustrated by other things that she does. I started to use the word “annoyed” rather than frustrated, but that suggests an irritation with Kate herself. That’s not it. It’s a frustration that I haven’t been able to accomplish what I had intended. Most of the time, I even see humor in these frustrating experiences. Let me explain.

If you are a regular reader of this blog, you know that I readily acknowledge having OCD tendencies. I like order and regularity. People with loved ones with dementia will immediately recognize the potential problem. That means Kate and I are like polar opposites. Each day brings a host of things that don’t match my plans or desires. Let’s look at a few examples.

A year and a half ago, I had our master bathroom remodeled. The motivation was to make it more handicapped accessible. Since the remodeling, Kate has showered mostly in the bathroom of our guest room. She does often brush her teeth in our bathroom. I don’t know how it happens, but she frequently spatters toothpaste on the mirror above her sink. She also leaves water on the counter around the sink. When she uses a wash cloth and towel, she rarely hangs them up. They are just thrown on the counter.

On those occasions when she showers in our bathroom, she leaves her night gown that is thrown on top of a cabinet for our towels. She normally uses at least two bath towels, sometimes three. In addition, the bathmat is wet as though it might have been used to wipe up the floor. When she leaves the bathroom, they are almost always thrown on the floor. When I see them, I clean things up. I do notice these things and prefer they didn’t happen, but I think of them as trivial. I am not seriously bothered. In a way, it really is comical. Think of The Odd Couple.

There are two other things that have caused more angst. One is my car. I try to keep all my belongs looking as new as I can for as long as I can. My car is a little over 6 years old, but I would still like it to look like new. It doesn’t. I have accepted the fact that with Kate, it puts too much emphasis on something I consider far less important than the quality of her life. That doesn’t mean that I don’t notice things. I keep a hair brush in the car for Kate. The other day she started pulling out the accumulated hair in the brush. She simply pulled it out and dropped it on floor board at her feet. I am sure she felt better having a brush that was free of hair but never gave a thought to the fact that it was now on the floorboard of my car.

My number one frustration occurs with her clothes. I have many specific examples, but I will pick the one that bothers me most. Friday morning in Asheville, I got out a brand new pair of stone colored pants and a nice casual top that she had worn only a couple of times. They were topped off with her nicest casual shoes. This is what she was wearing when we arrived home and she decided to work outside. About fifteen minutes later, I looked out. She was sitting on the ground pulling weeds. Two or three years ago, I would have suggested that she change into her yard clothes if she wanted to work outside. Over the years, I decided to accept her natural inclination. She has worked in her regular clothes ever since, and I have become more appreciative of Oxyclean. I recognized that I was fighting a losing battle. She couldn’t adapt to my way of doing things. I needed to adapt to hers. Today, I believe we are both winners. More than anything else, I want her to enjoy herself and be happy. She can’t do that if I try to force her to live like me. I am convinced that I made the right choice to adapt rather than fight.

Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.

When you run into a problem, you use whatever skills you have to solve it.

Kate and I stopped for lunch before our visit with Ellen. Shortly before we left the restaurant, she went to the restroom. Knowing she wouldn’t remember where we were sitting, I kept watching for her to come out. As I might have expected, she took a wrong turn to get back to our table. I saw her approach the entrance to the kitchen and thought she was going to ask for help. I got up from our table and walked toward her. She was talking with one of the employees. Before I reached them, they had turned and started walking back to the restroom. Kate saw me and said she would be right back.

I returned to the table and waited. All the while, I was wondering what had happened in the ladies room. I thought perhaps something wasn’t working or that Kate might have broken something. In a few minutes, Kate and the employee walked over to me. Kate said, “She is going to tell you something that I want to remember.” The employee told me that Kate had seen a quote by Eleanor Roosevelt that said, “A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” Kate just beamed and said, “Isn’t that a great quote. Now make sure you remember that.” Kate thanked the employee and asked her to say it one more time.

As we walked out I saw the employee and went over to thank her myself and let her know about Kate. She was a very compassionate woman and had already guessed. Kate walked over and gave her a hug. It was one of those moments that hit me once in a while. Tears instantly welled up in my eyes, and we said goodbye.

As we continued our drive to Ellen’s, I thought more about Kate’s predicament. She saw the quote and must have read it several times. She wanted to remember it, but finally had to recognize that she couldn’t. She knew she couldn’t take me into the ladies room to read it and remember it. What does one do when caught like this? If its really important, you have to ask for help. She did just that, and she hit the jackpot. She found a caring person who was not just willing to help but to do so in such a sensitive manner.

I am also reminded of John Zeisel’s book, I’m Still Here. He makes the point that although the person with dementia may lose some abilities, they retain others for a long time. Kate is well into her journey. It’s over seven years since the diagnosis. By my own judgment, she is well into Stage 6 of the seven-stage model. Nonetheless, she retains amazing skills in casual social interactions. She has amazing insights about me and many social situations. In addition, she works hard to solve problems that would not have been problems before Alzheimer’s, like putting clothes on. It’s a challenge to distinguish the front and back of most of the tops she wears. Often when I start to help her, she stops me. She wants to do it herself. The saddest thing of all is when she has to give in and ask me for help. I’m beginning to think more about Eleanor Roosevelt’s quote about women and tea bags. Kate is in “hot water,” and she’s showing just how strong she is.

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

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

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

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

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

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

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

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

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

Is it better to know or not to know?

I am currently reading (that is, listening) to The Inheritance by Niki Kapsambelis. It is a fascinating account of two true stories. One is about the efforts of medical researchers to understand Alzheimer’s and uncover a way to prevent and/or cure it. The other is about a family that has experienced the disease over several generations. The part I read this morning deals with the family members’ opportunity to be tested for the gene that is the carrier for the disease. Most of the family chose to know. Others did not. What do you think you would do?

This question led to my reflecting on our decision to find out if Kate’s symptoms were just part of normal aging or if she had Alzheimer’s. Too much time has passed for me to recall clearly when we started asking ourselves that question or exactly how each of us felt about it. I do remember that Kate wanted to know. I also recall that I didn’t have the same desire. Knowing how little there is that one can do to change the ultimate outcome of the disease, I believed we could just go on living our lives as fully as possible.

I recall that by the time we initiated the process for her to be tested, we were pretty sure, but not confident, that she had dementia. Kate had been the first to notice the symptoms five or six years before. I began to notice more after she had mentioned her fear that she might have Alzheimer’s. We seem to have reached the decision to find out at the same time.

When her doctor gave us the results of her PET scan, Kate said she was relieved to know. I remember that she accepted the diagnosis quite calmly. I can’t say the same for me. Immediately, I felt a deep sense of sadness. I choked up. The doctor handed me a tissue to wipe the tears. You might think that if we were already prepared for the answer the doctor delivered to us, I would have responded more like Kate. In retrospect, I think we both responded in ways that are consistent with our personalities. I remember our daughter’s having a bicycle accident when she was twelve or thirteen. As we were with her in the emergency room, it was Kate who was as steady as a rock. I don’t know that I showed it on the outside, but I was a wreck on the inside.

The impact of the news wasn’t limited to that moment. Kate remained calm, but the news did take its toll on her for a short period of time after that. We talked talked a good bit in the weeks that followed. We talked about the implications and how we should respond. When should we tell our children? Our extended family? Our friends?

It wasn’t long until we began to realize that there really was no impact on our day-to-day lives. We began to feel the way we did before the diagnosis, but, for me, the impact has remained as a central part of my life. I made an abrupt change in the way I responded to her forgetfulness and other symptoms of her illness. Now I understood why she was doing so many of the things she did. I became a more understanding husband.

I tend to be a planner and quickly went into planning mode. As her caregiver, I haven’t stopped yet. The plans are always changing as necessity demands. I believe that getting the diagnosis was the right thing for us. Knowing was the catalyst for our taking advantage of our time together. We thought we were already doing that, but the diagnosis caused us to shift into high gear. That is how we plan to live as long as we are able.

Both of Us Are Adapting

As the year ends, we are experiencing some things that are just like they were a year ago. That is, most of Kate’s symptoms are very similar to a year ago. There are, however, two differences. The first is not surprising, but it bothers me. Her memory is clearly worse. Second, she and I are both adapting pretty well to the changes that we have experienced not only this year but the preceding seven years since her diagnosis. Let me give a quick example that occurred this afternoon.

Apart from our routine daily events, Panera, lunch, and dinner, the only thing on our agenda was a birthday drop-in for a woman with whom we sit at Casa Bella for their musical events. She was 93 yesterday. The drop-in was between 2:00 and 5:00. We returned home from lunch shortly before 2:00. My intention was to be at the party around 3:00 but with no firm time. As we got out of the car, Kate asked, “What can I do?” I told her we would be leaving for the party in about forty minutes and that she could work on her iPad for a while or go outside for a short time before getting dressed for the party. She had forgotten about the party. I had told her multiple times including just before we got home. She chose to go outside. It is like a magnet for her.

I let her stay outside for about thirty minutes. Then I called her in to get dressed. She came in right away, something that is new over the past year or so. I walked to her room with her and showed her some clothes that I had picked out for the party. She liked what I had chosen and started to get ready as I left the room. In a few minutes, I went back to our bedroom where I found her dressed in the same clothes she had been wearing. I mentioned the party and told her she hadn’t put on the clothes I picked out. She had forgotten the party again. She didn’t remember any clothes I had picked out. She followed me back to her room where she had thrown her top on a chair and the pants on the floor. She had put her sweater back in the closet.

This time she put on the clothes I had picked out. More significantly, from the standpoint of a change in her is that she very happily accepted my suggested clothes and put them on. In the distant past, she would have asserted her independence. As the year closes, I find that she commonly accepts my suggested changes in her clothes when I think it appropriate, now. This surely makes things easier for me. As I have noted before, though, this comes at a cost because I know that her increasing dependence is associated with the progression of her Alzheimer’s. I don’t like to see that.

I, too, have adapted over the course of Kate’s illness. I now do a better job of not fretting about her wearing good clothes to work in the yard, or to wear clothes that are somewhat soiled, or to avoid any rigid time constraints. All of these things have helped us handle our situation with a minimum of frustration. I emphasize “minimum.” It would be next to impossible to avoid all frustration. I am glad to say that my sense of frustration is a very minor aspect of my feelings. I find that sadness for Kate and for our relationship is a much bigger emotional issue.

The year has been marked by highs and lows. I haven’t gone back to read my posts from the past few months, but I believe I was in a more upbeat mood several months ago. I sense that as the year closes, I am less upbeat as I consider that the latter stages of her illness appear closer and closer.

The Sitter is Still Working Out

Today was the first time we have had a sitter since before Christmas. We had missed three days while we were in Texas. I wondered if this would present a problem for Kate. I should not have worried. When the sitter arrived, Kate saw her pull into the garage as she (Kate) was about to go outside. She said, “Who is that?” I said, “That’s Mary. She is going to be here while I go to the Y.” Kate greeted Mary warmly as she entered the door. They both went outside while I got a few last-minute things taken care of before leaving. As I drove down the driveway to the street, I stopped where Kate was standing in a flower bed with Mary. She (Kate) asked where I was going. I told her the Y. Then she pointed to Mary, smiled, and said, “She’s my guard. I can’t get into any trouble.” I waved goodbye. Once again, I felt good that the sitter is working out as I had hoped.