| A real-time account of Dementia Caregiving

January 19, 2019

A Day of Contrasts

At 9:25 yesterday, I walked down the hallway to get Kate’s clothes when I heard her say, “Hey.” Before I could respond, she said it again. I hear this a lot now. It can mean different things. Often it means she wants something. Sometimes she is just trying to find out where I am. Yesterday morning, she was just letting me know she was awake and, perhaps, that she needed clothes. When I got to the bedroom, I found that she was still in bed, awake but not ready to get up.

It was a morning when she wasn’t in a particularly good mood. She acted as though I had said something that annoyed her. A little later, I asked her if I had said something that bothered her. She said, “No, but you probably will.”

Nothing that Kate said or did indicated that she was happy to see me. I chose to ignore this and simply help her get ready for the day. From past experience, I have learned that she won’t maintain that mood for long. I don’t know what precipitates these moods. I believe that her feelings may be a result of my control over so much of her life. I know that she doesn’t always like that. I also know that I often have to work to get her up or to get ready to go places. It could be that when she sees me come to her bedside in the morning, she naturally thinks that means trouble.

It turned out that I made the right choice to avoid a discussion with her and to help her getting up. I helped her dress, got her medicine for her, got her cup and iPad to take to Panera, got her jacket, and helped her into the car. The results weren’t immediate but did occur rather quickly. My own analysis of the situation is that focusing on the every-morning tasks provides Kate with an opportunity to experience some of the things I can help with and for which she recognizes she needs help. When that happens, she is more appreciative. In the meantime, she forgets that she was irritated, and life goes back to normal.

Because she was up early and did not shower, we got to Panera in time for her to have a muffin and enjoy time to work on her iPad before going to lunch. By the time we got there (a 4-minute drive from our house), her mood was vastly different. She was back to normal. As we started to walk across the parking lot to the door of the restaurant, she automatically reached for and grasped my hand. At that point, I felt sorry for her. Not too long before that, she had expressed irritation with me. Now she needed me for security.

We faced a more dramatic expression of her dependence on me when I was about to leave for the Y after the sitter arrived yesterday. When we got home from lunch, she said she wanted to relax in the family room. She picked up a 3-ring binder of family information and photos I had made for her several months ago. It has the names of parents and grandparents as well as information about us, our marriage, and our children. She hadn’t taken much interest in it until yesterday. I am sure she didn’t even recognize what it was when she picked it up and sat down on the sofa. Even though I used a very large font, it is hard for her to read. As she looked down one of the pages, she said, “Hey, here’s your name.” I walked over so that she could show me. I stood beside her as she looked at the information on that page, and I read it for her. She was quite interested.

About that time, Mary arrived. After greeting her, Kate asked her to sit on the sofa with her to look along with her. Then I told them I would be leaving for the Y. When I said that, Kate got a very sad look on her face and said, “You’re leaving? Can’t you stay with us?” It was a radical contrast with her enthusiasm for the information she was looking at. I suggested that Mary could read it to her. She said, “But this is something you would enjoy too.” It may be my imagination, but I think she looked even sadder when she said, “Why can’t you stay? I want you to.”

As with so many things that happen, I had to make a snap decision. I knew it wouldn’t be long before we could read the entire book. I stayed, and I am glad I did. Kate and Mary sat side by side on the sofa while I stood behind them looking at the book over their shoulders. I had written the book in a bullet-point style to make it easier for Kate to read. Because I was with them as they went through it, I could elaborate on much of the information. Kate loved it. It was just like the pleasure of a young child as her parent reads a favorite children’s book to her.

When we finished, I could tell it was a moment when I could make an easy exit. When I said I was going to the Y, Kate didn’t make any effort to stop me. She was happy, and I was on my way.

One other thing happened after dinner that I thought was both interesting and informative. We had walked to the car after leaving the restaurant. I have been helping Kate with her seat belt recently because she has had more trouble getting buckled up. When I started to help her last night, she stopped me and said, “I can do that.” That led to a very brief conversation. I said, “I’m sorry. I know that I sometimes try to do too much for you.” She said, “Yes, you do, but I know you’re just trying to help.” I said, “I will try to do better.” Then she said something that surprised me. “No, don’t change. It’s better if you do too much than if you do too little.” What surprised me was that her instruction to me involved a higher level of rational thinking than I believed possible at this point. This was not simply an expression of a feeling of need arising from her intuitive ability. It did involve that, but she had to put that together with another thought, that if I did less, she might need help when I didn’t provide it. This may be a little thing, but I was glad to see that she put these together and expressed it so clearly. As she sometimes says (though not in a long time), “Don’t count me out yet.”

January 19, 2019

A Shaky Start

I had just finished my morning walk around the house just after 8:00 this morning when I checked the video cam in our bedroom. I saw that Kate was standing by her side of the bed. I soon realized that she had gotten up and gone to the bathroom. I went to the room and asked if she needed anything. She asked if she could go back to bed. I told her it was still early and that would be just fine. She said, “Oh, good.”

Once she was back in bed, I could see that she was “uneasy.” It didn’t look like she would go right back to sleep. She asked me if she had to go anyplace. When I told her we didn’t have anything on our agenda today, she breathed an audible sigh of relief. Then she said, “Are you my daddy?” She paused a second and then added, “Or something else.” I said I was her husband. She had a puzzled look on her face. Then she asked, “What’s your name?” She asked me to repeat it again. She said, “I’m going to try to memorize that.” <pause> “Who am I?” I said, “You are Katherine Creighton.” I mentioned her parents, and she asked, “Have I ever met them?” I said, “Yes, they took care of you when you were a little girl and loved you very much.”

She told me she wanted to go back to sleep and asked if I would wake her up. I told her I would but that she could still sleep a while before getting up. I told her I would be in the kitchen if she need anything. Then she closed her eyes. She still seemed a bit uneasy. I asked if she would feel better if I stayed in the room with her. She liked that. I went to get my laptop.

When I returned, she said, “I’m scared.” I sat down on the bed beside her and asked what she was afraid of. First she said, I don’t know.” Then she said, “Do you think they will like me?” I said, “Who do you mean?” She couldn’t tell me, and I said, “You don’t have to worry. Everybody likes Kate. I rubbed her back and she began to relax. She said it felt good. In a few minutes, I got up and went to the chair on my side of the bed where I am writing this post. She is sleeping soundly.

January 18, 2019January 19, 2019

A Day of Confusion

For the second time this week Kate did not recognize me when she woke up. These occurrences come only days after my saying that she almost always recognizes me as someone she knows and trusts. That is still true, but it makes me question my optimism as to how long this will last.

As I have seen so often, this failure to recognize me came with a mixture of other signs that she sensed more familiarity than her rational ability could express. She didn’t display any sense of surprise when I walked into the room. She appeared to respond to me as she normally does. Then she said, “Who are you?” I said, “Do you recognize me at all?” She said she didn’t, and I gave her my name and told her I am her husband.” She seemed more puzzled than usual by this news. She didn’t recognize either my name or that I am her husband.

At that point, I decided not to make this a point of discussion. I was confident that with a little time she would put it all together. I suggested that she get up and let me take her to lunch. She responded the way she always does and got up. She let me help her dress. She went to brush her teeth, and I went to the kitchen. In a few minutes, I heard her say, “Hey, where are you?” That, too, is very normal. She doesn’t know her way around the house and looks to me to tell her where she should go. As I walked toward the family room, I said, “I’m in the kitchen.” She was standing in the doorway coming into the family room from our bedroom and saw me. We went back to the kitchen where I had her morning meds waiting for her. When she had taken them, I picked up our iPads and cups and we left for lunch at Panera.

While waiting for our order, she asked my name. I told her and said, “I am your husband.” She seemed puzzled and asked how long we had been married. I told her. She didn’t question me. Instead, she asked me her name. That led to her asking if we have children. When I told her, she wanted to know their names. That led to further conversation about our marriage. I told her we had had many good times during our marriage. She agreed and asked me to tell her some of them. After that, I didn’t see any obvious signs that she didn’t know me.

We stayed at Panera about an hour and a half and then returned home where Kate rested almost two hours. Then we went back to dealership to pick up my car that I left the other day. When the service rep walked us to our car, I walked directly to my side. Normally, I would have opened the door for Kate and helped her get settled in with her seat belt. Before I got in the car, I looked back and she was standing at the rear of the car waiting for me to tell her where to go. It is very common for her not to know which side of the car she should use. I know this but had fallen down on the job. I walked her to the passenger’s door. Once she had gotten in she didn’t know where to put her cup. The service rep was waiting for me at the driver’s door. She is the same one I had given my first “Alzheimer’s card” two days before. If I hadn’t already given her one, I would have this time. There was no need now. She understood.

Last night was Broadway night at Casa Bella. Kate’s confusion continued. She was seated beside the woman whose mother started the restaurant almost 79 years ago. We sit with Signora Rizzo and her husband for all the music nights. We hadn’t been there too long before Kate leaned over to the Signora and said, “What’s the name of this restaurant?” Everyone at the table is aware of Kate’s diagnosis, and Signora Rizzo responded beautifully. She told Kate the name of the restaurant and that her mother had started it. She also gave her a little of the restaurant’s history. Kate was surprised and interested in what she had to say.

I’m not sure why, but it took longer to get our meals last night. Several times after we had ordered, Kate asked me if we had ordered and when we were going to eat. Finally, she said, “Does this place serve food?” Signore Rizzo, who was seated beside me, said, “I was wondering the same thing, Kate.” We have always enjoyed sitting with this couple. The way each of them responded to Kate last night is consistent with the kind of people they are. I hope we have many more music nights together.

These little public incidents of Kate’s confusion are trivial. No one was embarrassed or disturbed, but they do make me wonder what lies ahead.

January 17, 2019

Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

January 16, 2019

Sleeping Later Doesn’t Always Mean Later

As I have mentioned in recent posts, Kate now sleeps later than she used to although sometimes she surprises me. Today was one of those. I was listening to a book by Donna Leon while taking a 30-minute walk around the house. (Yes, I know it sounds boring to walk in the house, but listening to books helps. Besides I no longer feel comfortable leaving Kate alone.) Just as I was ending my last circle from kitchen, to family room, to living room, to dining room, and back to kitchen, Kate opened the door to the family room. It was 7:30, very atypical for her. In fact, I think this would be the earliest she has gotten up during the past eight or nine months.

When I walked over to her, she asked, “Where are my clothes?” I often put them out before I go to bed but didn’t do so last night. I intended to do that this morning but thought I would have more time. I told her I would help her. She asked again where her clothes were. I detected that she wasn’t just asking the location of her clothes for the day. She was looking for all of her clothes to pick out something. She no longer knows where we keep anything. A little later I discovered that she had been in my closet. She was no doubt looking for her things.

I walked her back to her room. As we walked along the hallway, she stopped to look at a picture of her mother when she was in her late teens or early twenties. She said, “Who is that?” I told her it was her mother and said, “She was a beautiful woman.” She said, “Is she gone?” I told her she had died thirteen years ago. She was sad. Then I showed her pictures of her grandparents and the old Franklin home in Fort Worth. When we got to her room, I asked if she would like me to pick out something for her. She did. I gathered several things together, and we walked back to our bedroom.

I laid out her clothes on the bed and she said, “Don’t you want me to take a shower?” I told her that would be nice, and she said, “Who are you?” I gave her my name and explained that I am her husband. She was mildly surprised but not alarmed by the news. We walked into bathroom where I turned on the shower and left her to bathe.

I learned two lessons. The first is that I should be sure to get her clothes ready the night before. The second involves a new video monitor I set up yesterday. It is simply a small Amazon Cloud Cam that connects to my computer, iPad, and iPhone. It seems to work well, but it’s of little help if I don’t check it. <g>

January 16, 2019

A Nice Day with Touching Moment at the End

Like most of our days, we had a variety of experiences yesterday. Kate woke up on her own at 10:00 which worked well since I had a 1:00 appointment to have my car serviced and wanted to eat lunch prior to that. As usual, she was slow to be ready for much conversation, but she appeared to recognize me and smiled when I first saw her.

As we drove away from the house, she said something that surprised me. I don’t remember what it was, but Kate thinks I underestimate her abilities and expressed it to me. That led to her saying, “Men are like that. Women could probably do a lot of things better than a man.” I said very playfully (at least I intended it to be playful), “But I’ve been a “womenslibber” for a long time. She laughed and said (very skeptically), “Are you kidding?” I decided not to extend the conversation any longer and let it die. This kind of talk has never been part of our ordinary conversation until very recently. I don’t know what prompted it, but she has brought up the topic on a number of occasions in the past few weeks.

It was one of those days when she was especially concerned about “where we are.” I repeatedly told her during lunch, and she worked hard to remember. She just couldn’t. During lunch, she asked me to tell her about her parents. I mentioned both their names, and she immediately picked up on her mother’s qualities. It intrigues me that she focuses so much more on her mother than her father. She has always loved both of them. When we talk about her father, she always speaks affectionately about him. On the other hand, her mother receives the lion’s share of her comments. I believe that relates to the fact her father died almost twenty-nine years ago, and it has only been thirteen years since her mother passed. In addition, her mother lived with us the last five and a half years of her life.

We had appointments for haircuts in the afternoon, and I discovered a new issue that we are facing. A couple of weeks ago Kate’s brother’s wife, Virginia, mentioned that pulling one’s hair is something that is common among people (women?) with dementia. I think she was responding to some of my posts in which I said that Kate has acquired a habit of running her fingers through her hair. She starts near her skull and pulls a few strands of hair upward. Virginia said that this can lead to infections of the scalp and that I might ask the hairdresser to watch for this. Today was my first time to ask her to be attentive to this. I had forgotten to do so; however, as we were about to leave, she approached me and said that she had seen some places on her scalp that show a bit of irritation. She, too, had seen this kind of thing before. The big question is “what can we do about it?” My first step was simply to tell her that the hairdresser had noticed the irritation and suggested that she not run her hands through her hair as she had been doing. She was very responsive; however, it’s impossible for her to remember. It was not long before she got into bed and began again. I reminded her, and she stopped. I am sure that she will not remember. We may have a problem on our hands.

I had just finished paying the check after dinner when Kate said something about our relationship. It wasn’t long after that when she looked at me and said something about the possibility of our getting married. She could tell by looking at me that I didn’t know exactly what to say and responded before I could answer. She said, “It’s just something we could think about.” I said, “I love you and have good news for you. We are married.” She said, “We are?” I said, “Yes. We’ve been married for 55 years, and they have all been good years.” As I said this, I feared that by telling her the truth might cause a different kind of reaction. She might have taken that as a sign that “something” is seriously wrong with her. (On several occasions, she has been concerned about that and no longer remembers that she has Alzheimer’s.) Instead, she was happy, and her eyes filled with tears. We sat there for a few minutes holding hands across the table. This is the second time she has suggested our getting married. In both situations I have been touched by this tender expression of her feelings and was glad she was happy when she learned that we really are married.

January 15, 2019

Our Appointment with the Ophthalmologist

The biggest event on Kate’s birthday was her semi-annual visit to her ophthalmologist. We have been monitoring her cataracts for the past several years. During the previous two visits, they had reached a point that her doctor said we could go ahead or wait a little longer. After our discussions, I decided her vision wasn’t poor enough to necessitate surgery. Since the last visit, however, I had noticed what I thought was a significant decline in her vision. She was being exceedingly careful when going up or down stairs or curbs as well as pavement with light and dark sections or cracks. I wasn’t sure if the problem related to her Alzheimer’s or the cataracts or something else. Yesterday’s examination confirmed my suspicions about the decline and that the cataract in her left eye is the problem. We spent most of our time talking about the procedure itself and how comfortable the doctor felt about doing it with Kate at this stage of her Alzheimer’s. She was quite comfortable but said it was my call. At first I said I wanted to think about it and would call back with an answer. We talked a little bit more, and I decided to go ahead. We made an appointment for surgery on February 12. We have no plans to follow up with the right eye since it is a long way from requiring surgery.

It was interesting to observe Kate during yesterday’s examination. At the very beginning the woman who took care of the initial eye test asked how she had been getting along, if she had noticed any changes since last time. Kate said she could see just fine and had no problems. As the technician was about to jot that down in her record, I asked if she would like my impression. Then I told her that I thought the cataracts were causing more problems now.

It wasn’t easy for her to follow the instructions. When asked what she could see, Kate often asked, “Where?” She actually expressed some irritation when the technician tested her peripheral vision by holding up her fingers and asking how many fingers she could see. Twice Kate said in a stern voice, “Wait a minute!” The biggest challenge involved her reporting if she could see the “Big E.” That’s the one that encompasses the whole screen and must be 12” high. Kate first said that she couldn’t see anything. I think this was a result of her Alzheimer’s and not her eyes. I believe she saw the E but interpreted it as a bunch of lines and not a letter. Finally, she recognized it as an E.

The exam made me more appreciative of the challenges Kate has seeing everyday things. This happens a lot when we are in the car. I will say, “Look at that” and point to something. We often have passed whatever I was pointing out before she can figure out where to look. There are also many times that she doesn’t see objects that are in plain sight, for example, the clothes I lay out for her. She doesn’t know what to focus on. I believe this is largely a problem created by Alzheimer’s and not a physical problem with her eyes.

Having made the decision to have the surgery, I am now eager to see how much her vision improves. I am optimistic that it will help her feel more secure when she goes up and down curbs and stairs and across pavement. It would be great if it also makes it easier for her to work her jigsaw puzzles. We’ll soon find out.

January 14, 2019

Catching Up

I observe so many examples of “Living with Alzheimer’s” these days that I forget to document them for the blog. That’s a special problem when we have very active days as we had over the weekend. With our trip to Nashville on Saturday and a play yesterday afternoon, I failed to note several things.

One of those occurred yesterday morning. I thought it was noteworthy because I had written a post the day before in which I said that Kate almost always recognizes me as someone she knows and trusts. That wasn’t true yesterday. We were going to a play at 3:00, and I wanted us to have lunch without rushing, so I woke her about 10:30. I began by playing some soft music. Fifteen minutes later, I went in to see about getting her up. When I did, she looked at me strangely, and said, “Who are you?” I asked if she meant how we are related. She nodded yes. When I explained that I am her husband, she was surprised. Then I said, “You do recognize me as someone you know and are comfortable with, don’t you?” I expected her to answer yes, but she didn’t. Instead she said, “I don’t know.” Then I went in another direction. I said, “I am Richard Creighton, and I care about you very much. I’d like to take you to lunch. Would you like that?” She said, “Where are my clothes?” I said, “I’ve got them right here for you on the chair. Wouldn’t you like to take a shower before you dress?” She said, “Where is it?” I said, “It’s right over here. Let me show you.” Then I helped her out of bed and walked her to the shower. From that point on, everything went well. At lunch, she even used my name one time. Interestingly, I don’t recall her asking my name or hers the rest of the day.

One of the lessons I am learning is that explanations don’t seem to have the same power or effect that experience does. This is true for everyone she meets, not just for me. If I tell her we are going to have lunch with someone, she almost never knows who I am talking about. If I give her a little information about how we know them, that doesn’t seem to help. Once we are with them, it appears that she picks up more powerful clues. It’s her intuitive abilities that help more than her rational ones. I am sure that the longer we are with them, the more comfortable she feels. In an hour she picks up more information. This doesn’t mean that she remembers their names. It means she “senses” that they are people she knows and is comfortable with. The same thing seems to occur when she looks at photo albums. At first, she may not recognize some of the people. The longer she spends with the album, the better her recognition.

This discussion of recognition reminds me that she continues to have problems recognizing our house as “our” house. I noted above that she asked where the shower is. It is very common for her to ask where the bathroom is. She continues to want to follow me when we walk into the house, but not always. She also continues to confuse our house with a place we are staying while out of town. For example, after we got home from Nashville the other night, she asked if we were going to sleep here. I believe that is what she was thinking last night when she whispered my name and motioned to me to come over to her. When I got closer, she whispered, “Could you get me something to wear to bed?” I noticed that she had also closed our bedroom door. Earlier she had closed the door to the family room.

Something else that I noticed over the weekend is that she had some very talkative moments. One of those occurred Saturday night, after turning the lights out, she started talking about her mother and how much she helped other people. By itself that would not be unusual, but I was struck by some of her observations about people in general. She said that people have lots of different kinds of problems and generally don’t feel comfortable talking to others about them unless they are people they trust. She explained that her mother was that kind of person and could listen without being judgmental.

She was also talkative at lunch yesterday. Some of that involved teasing me. I said something about her birthday which is today. She asked how old she would be. When I told her, she asked how old I am. I said, “I’m 78, but I could pass for 50.” (Joking, of course.) She laughed and said, “Have you looked in the mirror lately.”

Her appreciation of comedy has never included slapstick or farce. Yesterday we went to see Arsenic and Old Lace at one of our local community theaters. It’s a farce from beginning to end. She didn’t enjoy it. It seems like most of the local productions are musicals. She can appreciate them because of the music. I don’t think I will get tickets to another play. They demand too much of her. That’s not a great sacrifice. There are plenty of musicals.

January 14, 2019

Happy Birthday, Kate.

As a caregiver, I often hear expressions of concern about how I am getting along as well as compliments about my care for Kate. I appreciate that, but I sometimes feel Kate deserves more attention than I do. As I attempt to describe in this blog, this is a journey we are making together just as we have dealt with other challenges during our marriage.

Today is her 78^th birthday, and I am thinking about the way she has approached her diagnosis. She accepted it with courage and a positive outlook. I would have been more public if I had been in her shoes, but I respect her decision to be more private. She has never wanted people to feel sorry for her or to treat her any differently than they had done before receiving her diagnosis. To this day, she has told only one person. That’s Ellen Seacrest, her closest friend whom we visited in Nashville on Saturday. I honored her choice for several years, but we were making changes in our lives that I ultimately felt required an explanation to our family and friends.

Consistent with her desire for privacy, she wanted to maintain her independence. I have tried to respect that but confess that I’ve not always succeeded. Over time, she has grown much more dependent. Even now, she prefers to do things on her own, but Alzheimer’s has forced her to acknowledge that she needs help.

She has always been even-tempered. Alzheimer’s has made that more difficult for her. Overall, however, she has been very easy to care for. That is especially true because she is so generous in her expressions of appreciation. It is much easier to care for someone who is grateful. On those occasions when she has been abrupt with me, she has often apologized. She is genuinely kind-hearted. That’s not just the way she treats me. It’s the way she responds to strangers we meet in our day-to-day experiences. I can’t tell you the number of times she has thanked bus boys and other cleaning staff in the restaurants we visit. She also gives warm greetings to other customers. That warmth also extends to her sitters whose names she still can’t remember.

Kate’s sense of gratitude goes far beyond the things that I may do for her. She often talks about how fortunate she has been in her personal life and we have been in our married life. I agree strongly with both of these things, but I am inspired by her recognition of how well life has gone for her. She never mentions the dramatic impact that Alzheimer’s has made on her life. By now, of course, she no longer remembers that she has Alzheimer’s. She has experienced frustration, but her diagnosis has never lessened her feelings of gratitude. She never feels sorry for herself. She views health issues and death as natural events to be dealt with to the best of her ability. It may surprise some people to know that we have found the past eight years since her diagnosis to be among the most fulfilling of our 55-year marriage.

Kate and I share a number of things in common. That’s one of the reasons we have gotten along so well pre- and post-Alzheimer’s. Among those things we have in common is a sense of gratitude. Above all, I am grateful we met and quickly sensed a connection that would be permanent. So on this birthday I want to go on record by saying how much I admire her, especially for the way in which she has handled “Living with Alzheimer’s.” In my book she’s a champ.