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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.

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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.

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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.

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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.

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Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

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The Importance of Having a Team

The other day I read a tweet by Ian Kremer noting the importance of having a team to aid the caregiver and the person with dementia. I asked myself, “Do I have a team?” It didn’t take me long to answer affirmatively; however, the members of our team don’t know they are on it. Let me explain.

In the typical usage of the term, a team suggests a number of people who work or play together to achieve a common goal. If we begin with this concept of a team, I think most caregivers would have to say they don’t have one. I certainly don’t. In fact, one of the most significant problems experienced by many caregivers is social isolation. I don’t believe it is because people don’t care. I think they are just unsure of what to do for people with Alzheimer’s and their caregivers. I have read a number of things that point to the need to give others a better understanding of how they can help, but I believe this is a long-term solution. Caregivers need something right now.

My own approach has been to take the initiative to engage others in helping rather than waiting for them to take the first step. Some of this has come about by asking directly. For example, on numerous occasions I have invited different friends to have lunch with us. Some of these have been members of the Sunday school class that I taught for ten years. I had already been in touch with them by phone and in class for years. It was only natural. I knew that they wanted to maintain some contact and also that it would be good for Kate.

We have several very good friends who live in Nashville, especially Kate’s friend, Ellen, who moved there following a stroke. We have paid more visits to those other friends than we might have done otherwise. None of these people would think that they are doing anything special to help us, but they are.

Some of these visits occur right here in town. Two days ago, for example, a childhood friend and his wife from West Palm Beach drove over from Gatlinburg where they have a condo. They come to Tennessee about four times a year. Almost every time they come, we get together either in or near Gatlinburg or in Knoxville. We always have a good time, and they have been very supportive since learning about Kate’s diagnosis.

There are many more members of our team in just about every place that we go. These include all the servers at the places we eat, the other customers at Panera or other places. That happened at lunch today. As we were leaving, I heard someone call my name. It turned out to be someone we know from church and my Rotary club. We stopped and chatted about fifteen minutes before moving on. He wouldn’t think of his having done something to lift our spirits, but just engaging in conversation did the trick. Because Knoxville is not a large city, we have these kind of experiences wherever we go.

Finally, I would say that when I decided to be more public about Kate’s Alzheimer’s, that served as an implicit invitation for people to ask how she is doing and how I am doing. Thus, when I see people without Kate’s being along, I find myself telling them how things are going. All of the volunteer activities in which I have participated have also generated additional support for me. Of course, those activities are fewer now, but they have been significant.

I shouldn’t overlook the power of a team of people with whom I communicate via email. I have two college friends with whom I exchange as many as fifty emails a day. The longevity of this connection and the variety of interests we explore have been invaluable. In addition, I have established contacts with a few friends and family who have their own personal experiences with Alzheimer’s. Those relationships provide communications that deal more specifically with issues related to dementia and caregiving.

I almost forgot to acknowledge the team of professionals who are more obvious members of our team. They would include Kate’s doctor and dentist as well as the sitters who are here at home with Kate three afternoons a week.

Except for the exception of these professionals, none of the people I mentioned would think they are part of a care team working to make our lives better. But that is just what they are doing. They have been important sources of encouragement and support without having to make any special commitment to visit us, to send food or cards, or anything other than relating to us when we meet. It is easy for them, and it is easy for us. Best of all, it works. Yes, we really do have a team of people working to make our lives better. They just don’t know that is what they are doing or how important they are. I am grateful for their presence in our lives.

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An Hour Later

After posting this last entry, I told Kate I thought it was time for dinner. She said she wanted to finish her puzzle. Off and on over the past hour, I have asked her how she is doing. She was still not ready. The last time I asked, I told her I hated to stop her because she had gotten so absorbed. During this time she has not been coughing. Nor has she been wiping or drooling saliva to the extent she was when we arrived. She is simply engrossed in her puzzle. I really to hate to interrupt her. I don’t usually see her this intense. Best of all, she appears less tired now. Maybe the cough medicine did affect her and is wearing off.

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An Uplifting Phone Call

Shortly after returning from lunch today, I received a call from Inez Grayson. She is a friend of Kate’s and a former staff member at our church. They became friends when Kate was the church librarian. She had called me a couple of weeks ago to arrange a time when she could take Kate to lunch to celebrate her birthday.

Inez wanted me to know what a good time they had had and how much she enjoyed the lunch. Inez had arrived before I arrived with Kate and had ordered their lunches following my recommendations for Kate. Inez said she was so impressed that Inez had remembered what she likes. She also commented on how much Kate had talked. She found it surprising how many things that Kate had remembered about some of their past experiences. Several people whom Inez didn’t know came to the table to speak to Kate. Inez said she handled herself beautifully. After the friends had left, Inez asked who they were. Kate said, “I don’t know.”

I was so pleased to hear how well the lunch had gone. I’m not surprised. She has always been very fond of Inez, but I always like to hear that she has gotten along well. It is another good illustration of how well she can function in social situations. I hope this continues for a long time.

When Inez first called, she was happy to include me, but I thought it would be much better for just the two of them to have time together. I know that when I am around, I can dominate more than I should. I am so glad I wasn’t there.

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Unexpected Gifts

I have often commented on the importance of our social contacts with servers and other customers at the restaurants we frequent. In particular we have made it a point to learn a little about those who serve us, especially those who are our regulars. This is done without any expectation that they should do anything more than provide the service. They have done that well. Thus, it is a pleasant surprise when they respond to us in any special way as two of our servers have done this week and both involve something as simple as a Christmas card with an accompanying note.

The first came in the mail yesterday. It was from our server at a restaurant in Asheville. She has served us the past four times we have visited there. On Sunday, she had asked for our address, but I didn’t think anything about it until her card arrived. I was both surprised and touched by her thoughtfulness. Here is what she said.

Mr. Richard and Mrs. Kate,

 You will never know how the 2 of you have touched my life. Your example of love & devotion to each other is one of the greatest things I’ve had the pleasure of experiencing.

 Thank you for blessing me with this wonderful gift! You will be in my thoughts & prayers.

 Merry Christmas & Happy New Year!

 Melissa  

Today at Panera, one of the young men working there came to our table and gave us a card with another kind note.

As the holiday season is upon us, I think of all the benefits of being where I am. I quickly think of my relationships with great people like you.

 I find myself reflecting on the past year and those who have helped to shape my day-to-day life. It’s been quite a year for us all. I hope that 2018 will be just as memorable for you, your friends, and your loved ones.

 The end of the year brings no greater joy than to express to you season’s greetings and good wishes.

 May your holidays and New Year be filled with joy.

 Your friendly neighborhood barista,

 Dave

Both of the remembrances meant a lot to Kate and me even more so because we would never have expected them. Perhaps that is a good lesson for all of us. I wonder who we can surprise with a word of kindness in the coming year.

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Expressing Gratitude

One of the ways in which I, as a caregiver, have been fortunate throughout my care for Kate is her own expressions of gratitude. I know that many others who care for a person with dementia are not on the receiving of these acts of appreciation. I feel for them. It is enough to have one’s life organized around the care for another person. To do so without any sign gratitude would be unbearable. When you love someone and that person acknowledges her gratitude, caregiving is much easier.

It is true that Kate is more irritable than she was before AD. Those moments are usually rather fleeting. On the other hand, her expression of appreciation has punctuated the entire journey. It doesn’t occur all the time but often enough that it tells me she knows how dependent on me she has become. These expressions come in very small packages. Here are two recent examples.

The other day in a restaurant without anything to prompt her, she said, “Thank you for everything you do for me.” I don’t know why she said it at that time, but I interpreted it as her recognition that I do a lot for her. Another occurred last night. As we walked to the car after dinner, I walked ahead of her and opened the car door for her. She said, “You didn’t have to do that.” I said, “I know I didn’t. I just wanted to. I want to take care of you.” She responded, “You do. You take very good care of me.”