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.

Kate, Always the English Teacher

At the time of Kate’s diagnosis, we were told that her greatest strengths were likely to stick with her the longest while her weaknesses would deteriorate more quickly. That has proven to be true for her. She has always been geographically challenged. Getting lost when driving to places that should have been familiar was an early sign of a problem. Among her greatest strengths is an ability to handle herself in a variety of social situations with different types of people. I have mentioned many times how well she gets along when we are around friends and strangers. Even when she can’t remember people, she is able to engage in brief conversations as if she did. That has enabled us to remain socially active longer than I expected.

There is another strength that I’ve never mentioned. It is also one that hasn’t disappeared. She got her bachelor’s and master’s degrees in English and taught English for three years before taking a break when our children were born. When they were school age she completed a master’s in library science. Throughout her career, she has always thought of herself as an English teacher. Our grandchildren could testify to that. They have been corrected by “Nan” concerning their use of the English language many times.

She doesn’t limit her corrections to the grandchildren. I am often called to task as well. Even now, she frequently corrects me about one thing or another. If she were reading my writing I know she would have many edits. These days her corrections usually involve my use of specific words that she believes do not capture precisely what I intended or should have said. For example, this morning after she remembered someone’s name, I said, “You’re right.” She said, “I am right sometimes.” Thinking I was supporting her, I said, “You are frequently right.” Then she responded. “It would have been better if you had said, “usually.” I said, “You’re right again.”

I make a point of this because it’s a good illustration of how much her brain is still working and working correctly. Once in a while she says something that surprises both of us. When that happens, she sometimes says, “Don’t count me out yet.” The most appropriate response is, “I won’t.” I know, however, there are many times when I don’t think she will remember something or be able to perform some task. The easy thing is to believe is that she can’t remember anything, do anything, or understand anything. It’s much harder to recognize that even this long after her diagnosis (7 years this past January), she still possesses a good bit of knowledge and skill. I think I’m very good when it comes to recognizing this intellectually. I need to work harder to put that knowledge into action as I care for her during this most challenging time of her life.

Not So Little Things Mean A Lot

In an earlier message I mentioned that Kate’s brother, Ken, was creating a photo book of family pictures taken from the time of their respective births to the present time. She was as excited about the book as he and I had hoped she would be. Because her memory is so poor, I wondered if, and when, she would look through it again. It’s over 140 pages, so I knew she probably wouldn’t look through the entire book at one time. We put it on the coffee table in our family room along with another family album. I thought that might help jog her memory. I’m glad to say that has worked.

One day last week when I arrived home to relieve the sitter, she and Mary were seated on the sofa. Kate was proudly showing the book to her and providing her own commentary. As I walked into the room, I could immediately tell that Kate was excited to be reliving some faded memories as well as sharing them. After Mary left, I took her place beside Kate, and we spent a little time looking through the book.

Yesterday when I got home, Kate and the other sitter, Anita, were sitting in the family room. This time Kate was seated on the sofa by herself with the album. She seemed happy as a lark as she turned from one page to the next. As I did when Mary left the other day, I sat down and looked at the pictures with her, and we did a little reminiscing. Ken put a lot of work into this album. He will be glad to know that it is providing both of us with such special moments.

Surprise, Kate worked outside with her shrubs yesterday.

It has now been several months, since Kate has shown any interest in working outside in the yard. That is a dramatic change from the past when she worked through even the coldest months. I’ll never know what accounts for that. My guess is that the shrubs were so denuded that there were no longer any leaves for her to “pull.”

Yesterday that changed. When I came home after going to the Y and running errands, I found Kate pulling the new growth on shrubs along our driveway. I had two immediate reactions. The overwhelming one was a burst of happiness. It’s been a while since I have written about her work in the yard, so let me summarize why I felt this way. Since her diagnosis, more than seven years ago, Kate has had three primary activities other than those I provide for her.

One was working on family photo albums. She was introduced to this by her brother, Ken, who has completed numerous albums. He and Kate worked on one together, an album about their mother’s family. It represents a beautiful family history. She wanted to create her own albums for us and our children and grandchildren. She got her start after she was diagnosed with Alzheimer’s. Even though she worked on one for several years, she never got beyond selecting photos and editing them. Two years ago, she just stopped working on her computer altogether. She didn’t even continue with email. I think it got too challenging for her.

That left her with only two other activities. The major one was working in the yard. That meant pruning and “pulling leaves.” She had learned about the value of pruning long ago. As her Alzheimer’s progressed, I think she did it for herself more than here shrubs. It was a kind of therapy. It required little effort. When she had pruned back about as much as she could, she started pulling off the leaves. There were days when she would spend as much as 6 hours outside. It was great because she enjoyed it, and it was something she could do on her own without anyone’s telling that she was doing anything wrong.

This past fall she stopped working in the yard. I suspected that the colder weather played a part. In addition, we both had colds and the flu during the first of this year. When the weather began to improve, she didn’t get back to her yard work. I began to think it was a thing of the past, so I was much relieved to see her working yesterday.

I said, however, I had two immediate reactions. The first was elation. The second was apprehension related to the condition of the shrubs. I knew there was a chance that some of the shrubs could be permanently damaged by what she had done before, but I felt it was worth it for Kate. As spring has approached, I have been eager to see how many, if any, of the shrubs would come back. As I expected, it appears that some of them are dead. Others appear to have dead branches, but there is new growth coming from the base of the trunks as well as the roots around the base. In addition, there are some that look like they are going to be just fine.

So why the apprehension? That arises from the fact that the ones that look fine have new leaves that are sprouting. Those, of course, would be the only ones with leaves she can pull. It is still too early for them to have an abundance of new leaves. Many of them have only a handful. This means that the very ones that seem to be living may not ultimately make it. My hope is that enough of them survive to keep her busy until next winter.

Yard work is important to her and, thus, to me as well. If she loses that, she will have only one activity of her own, working jigsaw puzzles on her iPad. Right now she spends 5-6 hours a day, and sometimes more, doing that. It has become harder for her in the past year, but I see no sign that she is about to drop it. I never imagined how important an iPad be could. She doesn’t use it for anything other than jigsaw puzzles. I am thankful she has it.

Our Trip to Memphis

Kate and I returned from Memphis on Sunday. With each trip we take, I watch to see how she is adapting. I know that at some point, we will have to discontinue travel. I am glad to report that everything went well. Of course, we had the same kind of experiences we have at home, but they did not minimize the pleasure we had. For example, several times she asked, “Where are we?” She also asked me to tell her Jesse’s name as well as those of her two boys. I am optimistic about our upcoming trip to Texas a little over three weeks from now.

Breaking up our trip with an overnight stop in the Nashville area turned out to be a good idea. Kate normally spends so much time working jigsaw puzzles on her iPad that I sometimes worry about her being bored while we are in transit. She finds it difficult to work them in the car because of the frequent bumps in the road. The surprising thing is that she seems to get alone fine without her iPad.

The trip back home was a different story. We encountered bad weather off and on most of the way. The eastbound lane of I-40 was closed about twenty miles east of Nashville. The last mile before we had to exit took us an hour. The detour took another 30-45 minutes, so we were about two hours later getting home than I had expected. We were both glad to get home, but Kate took it all in stride. I am encouraged about additional trips like this one.

Special Moments Brighten Our Lives

Although I try not to deny the trials that accompany living with Alzheimer’s, Kate and I are quick to acknowledge how fortunate we have been thus far. Her diagnosis came at a time when I was able to retire, neither of us has had any other significant health issues, we have traveled, and we have remained socially active. In addition, there are always unanticipated things that happen to brighten our lives. I’m thinking of one of those right now.

For many years, Kate’s brother, Ken, has put together hardbound albums of family photos. These include ones that focus on particular trips or events as well as an annual volume that summarizes the entire year. Recently, he told me he was making an album of photos for Kate celebrating the many special people and moments of their lives. It is a full 140 pages of memories. It begins with their births and goes up to the present. He intends to surprise Kate with her own copy when it is ready in the next few weeks.

A few days ago, he asked me to look over the album and make any edits or suggestions that might be appropriate. I was overwhelmed and touched by what he has done. Kate has always valued her family and often speaks of what it has meant to her. As her memories fade, this will be a treasure for her, especially as it is such a personal gift from her brother. I will no doubt say more after she receives it, but I have a warm feeling of gratitude that Ken is doing this for his big sister. Living with Alzheimer’s doesn’t mean an absence of special moments like this.

We’re off to a good start today.

After a somewhat rocky day yesterday, I wondered what might be in store for today. Kate often takes a while to fully wake. Sometimes it just takes longer than others. Yesterday was one of those. Today she surprised me when she was ready for her muffin at Panera before I knew that she was up. In terms of my own preferences, she was up at an ideal time. It meant no rushing to get to Panera and then for her to have lunch before the sitter arrives at noon. I can’t stress enough how much better she and I feel when she can take her time getting ready.

It has been a relaxing morning for the two of us. I have taken care of some email communications with Kate’s brother, Ken, met with someone who has given me a quote on a new water heater, arranged a phone call appointment for tomorrow, updated my file on the sitters, and the other things that my friend, Tom Robinson, refers to as his “morninglies.”

Kate has almost finished her sandwich, something she doesn’t always do. I don’t think I have ever commented on the way she eats sandwiches. Most of the time, she doesn’t pick up her sandwich and take a bite. She takes on the top slice of the bread and picks out the various items between the slices. I see that today she didn’t eat any of the slices of tomatoes or the lettuce. She did eat the slice of cheese and the turkey. She also finished the two slices of bread but left all the crust. She doesn’t like anything “crusty.” Lately she has been taking most of the breading off her fried shrimp and the fried chicken she gets at one of the restaurants we visit regularly. She does not eat the bacon if it comes on a sandwich. I have learned to order most sandwiches without bacon or lettuce. We’re always adapting to change.

We had a good finish to a somewhat rocky day.

Just before 6:00, Kate came into the family room where I was listening to music and making some notes for my blog. She was ready to eat. She was Back to normal. When I asked about her leg, she said that it still hurt but that it wasn’t bad. We were off to dinner.

In the car I turned on some music that I know she enjoys. We didn’t have far to go, but she really appreciated the music. She was in good spirits throughout the meal. As we came home, I played more music. When we arrived, she looked at me as if to say, “What now?” as she often does. I told her we could relax in the family room and I would play some music. She liked the idea, so we did.

We spent almost an hour and a half there. She and I both were enjoying the music. She began to reflect on her mother and said how happy she was that we had been able to keep her in our home the last 5 years of her life. That led to other things about her family, our marriage, and children. This occurs regularly, and I am happy to support the conversation. We are both very grateful for our parents, our children, and our lives together. We often reflect on the many things we have been able to do over the past 55 years. About 20 minutes before we went to the bedroom to get ready for the night, I played a few pieces of music that she likes a lot. She was moved by the music in a way that I have observed a few other times recently. She became very teary as the music played. I was touched as well. Music as been very important to me. I am so glad that she is able to be moved by it as well. What had been a more difficult than usual day for us ended up on a very high note. I am grateful.

The Sitter is Still Working Out.

In several posts in the past 2-3 weeks, I mentioned a concern that Kate was not as taken with having a sitter as she was during the first four months or so. Her reactions to the sitter during the past week have convinced me that something else must have been bothering her and not the sitter. During that rocky period, she didn’t express any of the same enthusiasm when the sitter arrived or respond with appreciation when she left. That seems to be over. The past few times the sitter has arrived she has treated her more like a friend.

Yesterday I was especially concerned about how she might react because she slept late. That presents a problem from me because I like to take her to get a sandwich before the sitter comes at noon, and I leave for my weekly Rotary meeting. I checked on her about 10:15. She was still in bed but was awake. I asked her if she would want to get up so that I could take her to lunch, or if she would prefer to remain in bed and let the sitter take her to lunch. She said she would rather go with me. I told her I would like that but that she would need to get up, and she did.

By the time she was ready to leave, I could see that she would never finish eating before the sitter came. I called the sitter and told her to meet us at Panera. I’ve done that on two other occasions. I feel a little uncomfortable about doing this because we are always together for lunch, and I feel like it is a little abrupt to get up and leave her with the sitter. Of course, this is my problem, not Kate’s. Yesterday, I was particularly sensitive about her response since she had expressed a preference for me to take her to lunch. I needn’t have worried. All three of us handled it very naturally. Kate didn’t seem to mind at all. I was relieved and left for Rotary. More importantly, she thanked the sitter as she left when I returned, the same as she did last week with another sitter. I think we are back to our routine. All is well.

Why I Say We are Fortunate

I have frequently said that compared to many couples living with Alzheimer’s, Kate and I have been very fortunate. My Friday with Kate reminds me why I feel that way. As we left for lunch, I said something she didn’t like. She snapped back at me. Then she quickly said, “I’m sorry. I shouldn’t have said that.” While this doesn’t happen every time she is irritated with me, it does occur with some frequency. That makes it much easier for me to deal with such moments than if she never apologized or recognized what she had done.

Then at Applebee’s, she asked me to tell her my name. I said, “Why don’t you tell me my name?” Then she said, “I’m serious.” She obviously was, and I said, “Richard.” Then she said, “Creighton.” I asked what city she lived in. She hesitated a moment and said, “Fort Worth?” I reminded her we live in Knoxville and had lived here almost 47 years.

When we have these little exchanges, I interpret them as a sign of trust that she can be open with me about her failing memory. I suspect that is something that may gradually include other people. I got a hint of that when Larry was with us this week. I don’t recall exactly what she said, but it was an indication of having trouble remembering things.

After ordering, Kate asked me the server’s name as she does every time we eat there. I told her. She said, “Oh, I know that. I’ve asked you that before.” In this case, she had asked me only a few minutes earlier. Then she said, “You are so patient with me.”

She is right, but I was struck by her saying so. That shows she remembers certain kinds of things when there are so many other she can’t remember. This is a kind of memory that is much deeper than remembering my name. It’s a connection that requires a recognition of one’s personal qualities or characteristics. Like her earlier apology, it makes it easier for me to accept other things that she does.

These experiences also illustrate something about our relationship that has made life easier than it is for some other couples. We are both conflict avoiders. Like other couples, we have had conflicts. They have never led to anything but a cooling off period and a later conversation about whatever brought about the conflict. Since her diagnosis, Kate has definitely been more irritable. This has often happened when I felt the need to rush her to get ready to go out. It has also occurred when I have tried to help her when she has wanted to be more independent.

As she has become more accepting of my help, conflicts have lessened. The exceptions usually occur in the morning right after she has gotten ready for our morning visit to Panera. It takes her a while to be ready for conversation, and I am prone to rush that.

Some mornings when she meets me in the kitchen, I can tell quickly that she’s not in a good mood. My initial approach was humor. To some extent it seemed to work. She is not a natural kidder, but it prompted her to joke with me. She liked kidding me about my compulsiveness. Over time, she seemed to be more serious than before. That caused me to change my approach. I began to avoid saying anything that smacked of kidding her and to adopt a more loving response. I have found that I can re-direct her when she is not in a good mood by responding lovingly. This works. Sometimes she brushes it off, but most of the time she comes around rather quickly. We are fortunate to be able to work so well together. I hope it continues.